Merry Christmas, My Dear Friends,
I ventured to UCSF again this past Monday, this time taking my mother-in-law and my daughter with me. My navigator was on a cruise in South America, so I was on my own into, around, and out of the city...and I did it without flaw. She would have been so proud of me! We started with lunch at The Cheesecake Factory in Macy's at Union Square, and had time to watch the ice skaters and check out the Christmas decorations in Macy's. Then we made our way to my appointment at Mount Zion. I met with the Nurse Practitioner, Tammy, as Dr. Ryan was in Wisconsin celebrating his parents' 50th wedding anniversary.
I should share with you that a week before this appointment, I had gone to see my family doctor, David Duncan, as I was having a really hard time breathing, and I was working hard bringing up steady amounts of mucous. He checked my oxygen saturation and listened to my lungs, then began to ask me a number of questions. The oxygen in my lungs was normal, and my lungs weren't crackly, but after getting some info from me, he asked me to have a blood test and do a sputum test. I found out the next day that the blood test showed that I have an excess of fluid building in my body, which tends to suggest some kind of congestive heart failure, and the sputum test showed that I have a rare filamentous fungus in my lungs, so the sample has been sent to another lab for more detailed analysis, and I am on an anti-fungal medication. So far it seems to be helping a little bit. All of this led to Dr. Duncan getting my appointment with the cardiologist moved up two and a half weeks, though, so I met with her the day after my appointment at UCSF.
While it was not a"boring, just go home" appointment, there were not a lot of surprises at UCSF. I have continued to lose weight, just a bit, as my appetite is so-so. At this wonderful time of year where there are many once-a -year goodies, I just don't have much of a sweet tooth. Any other time of the year, that would be great, but I am missing out on so many yummy treats! I have to try and eat more protein as well as mine is low. So will try eggs, nuts, protein drinks, etc, as meat isn't a favorite right now, either. They were thrilled that my appointment with the heart doctor had been moved up as that is becoming a priority right now. I will return to UCSF on Monday, January 4th, to go over scans, which I will have this coming Monday. It will be interesting to see the results.
Matt was able to go to the cardiologist, Elizabeth Hereford, with me. She met us in her office to go over all of the facts of my case, and to look at all of the meds I am on. Wow, that was quite an array of bottles. Then she did an exam, and decided to have another EKG done, and she did her own echocardiogram (like a sonogram) of my heart. Matt got to see it, and she explained to him what it was he was looking at. He found it very interesting. She did not seem to think that the failure was as bad as the first echo led her to believe, although there is some there. So she took me off of the high blood pressure med I was on and put me on another one that she thinks will help the issue better. Of more concern to her was that my pulmonary pressure is twice what it should be. That means that while the oxygen in my blood is okay, the blood coming from my heart is not flowing well to my lungs so the volume is not there. This is causing my shortness of breath, which has become a regular thing lately, whether I am active or not. It is scary at times. Anyway, she is going to have to do some research on the meds I am on, how they work together or may be affecting me, and then will see me again in three weeks to see what the next step is. Which means that I live with the shortness of breath for now. But Matt and I had a really good impression of her, and feel confident that she will help us get to the bottom of this. Not an immediate result, but perhaps we are finally on the way to some answers.
I recently was asked to share my remembrances of God at Christmas. It all started at the manger, where God gave us Himself. In a show of His incredible love for us and desire to be with us and dwell with us, He stepped down from the throne and became one of us so we could get to know Him, and learn to trust Him, and love Him back. He could have done this many ways, but He knew that the best way was face to face. Oh, am I glad that the baby that Mary welcomed in the stable did not stay a baby. He grew up and showed us the kind of life that God wants us to live. And when we fell short, He offered us the gift of a lifetime. He went to the cross where He felt our sins, died our death, and lived our resurrection. The birth of Jesus would not have been complete without the cross. That's how much God loves us and wants to dwell with us. It's very easy to remember God at this time of year, when His name is in our songs, when we model His gift-giving, gather in churches to celebrate His birth, and honor Him with our nativity sets. It's so magical that we almost don't want it to end...and thankfully, it doesn't have to, because the God that we remember at Christmas can be found every day of the year. I pray that when He yearns for your fellowship and stands at the door of your heart and knocks, that you will be sensitive to hear it, and will be quick to answer and not keep Him standing outside in the cold or send Him away to a stable. May your heart be warm and inviting...a worthy place waiting for Him to dwell with you.
Merry Christmas, My Friends...and Fireflies,
Danene
December 25, 2009
Friday, December 25, 2009
Sunday, December 13, 2009
Catching Fireflies
Hello, My Friends,
Since we last shared time, I have started a second round of the chemos I am on. I don't get a break in between rounds, as I did with the Sutent, but they are still considered rounds.
I have experienced some interesting side effects with these two drugs, and the lack of some I have had before. About two weeks ago, I broke out in a rash from head to toe, red and raised and blotchy. I was a sight to behold. Around my neck, it looked like I had been sunburned. And when I went to get my bimonthly blood draw, the nurse had to go by touch to find the vein as my arm was so blotchy she couldn't see the veins. Since then it has almost all gone away. I still have a few spots and occasional itching, but overall it has passed. Amazingly, the kids in my class did not say anything about it or ask questions. I don't know why, as they couldn't have missed it! I do not have any signs of hand-foot syndrome, as I did before. How thankful I am as I walk pain free!
I have had a couple of sores in my mouth along the side of my tongue and in the back of my throat. At my appointment, the dentist was able to smooth a tooth that kept catching on the sores, and that helped tremendously. My hygienist also gave me something to put on top of it that would help it not hurt while I ate. She was wonderfully patient with me during my teeth cleaning. I have not had any problems with my tongue, as I did on Sutent, so I am not overly limited with what I can eat now, as far as spices, acids, etc.
A new experience is how these meds affect my appetite. It is very sporadic. I can be very hungry, then start to eat and fill up quickly. Other times I am not hungry at all, or nothing sounds good, so I have a hard time eating. Pretty much, I have lost all of the weight from being off the chemo for that month, and a little bit more. From my highest moment to now, 25 pounds total. I had bought a new pair of pants, as I do not have many pairs for the winter. I took them to my mom's to be shortened, and when I put them on, they no longer fit-very sloppy. Oh well!
I also find that I tire out much more easily. This is even more so because of the dreaded cough. I also seem to have aquired a cold, which has settled in my chest. The doctor put me on an antibiotic in hopes that it will not turn into anything else. I cannot get in to see the cardiologist until January 7th, so I will not have any answers as to being short of breath until then. Please continue to pray that the cough will begin to go away and that I will sleep at night without the feeling that my chest is heavy.
Last weekend, my mom and I were able to attend the Women of Faith's "It's a Grand New Day" in Sacramento. We went with some lovely ladies from our church. What a delightful time we had listening to Christian women make us laugh and think and sing. The first speaker was the dynamic and funny Patsy Clairmont. Towards the end of her turn, she shared that she has many fireflies in her life-those who bring moments of brightness in times of darkness. I want to share with you some of the fireflies who have brightened my life in the past few weeks of traveling through side effects and fatigue. When I first walked in to school sporting my lovely new rash, I showed it to the two ladies who run the office...and the school. Not a pretty sight, but one looked at me and said, "Danene, we think you are beautiful." I can't tell you how much that meant to me at that very moment. Since then, more colleagues than I can count have taken me aside to offer me a break in my class, to cover my yard duty, to spell me for a few minutes so I can catch my breath, just to let me know they care and are there for me. I have a very limited number of days for the year to use as sick days, so I am very selective in using them, and my collegues know that. What a comfort to know that if I just need a few moments, friends are there. What bright moments of light these fireflies have brought me.
I know that there are more fireflies in my life. In fact, if I was collecting, I believe I would have shelves full of jars full of fireflies who have brightened my days. Do you have fireflies in your life that you need to recognize and thank? And even more, can you be a firefly to someone else who is having a dark moment? This is a challenge to me, too. Find someone and be a bright light to them this week.
Glowing,
Danene
December 13, 2009
Since we last shared time, I have started a second round of the chemos I am on. I don't get a break in between rounds, as I did with the Sutent, but they are still considered rounds.
I have experienced some interesting side effects with these two drugs, and the lack of some I have had before. About two weeks ago, I broke out in a rash from head to toe, red and raised and blotchy. I was a sight to behold. Around my neck, it looked like I had been sunburned. And when I went to get my bimonthly blood draw, the nurse had to go by touch to find the vein as my arm was so blotchy she couldn't see the veins. Since then it has almost all gone away. I still have a few spots and occasional itching, but overall it has passed. Amazingly, the kids in my class did not say anything about it or ask questions. I don't know why, as they couldn't have missed it! I do not have any signs of hand-foot syndrome, as I did before. How thankful I am as I walk pain free!
I have had a couple of sores in my mouth along the side of my tongue and in the back of my throat. At my appointment, the dentist was able to smooth a tooth that kept catching on the sores, and that helped tremendously. My hygienist also gave me something to put on top of it that would help it not hurt while I ate. She was wonderfully patient with me during my teeth cleaning. I have not had any problems with my tongue, as I did on Sutent, so I am not overly limited with what I can eat now, as far as spices, acids, etc.
A new experience is how these meds affect my appetite. It is very sporadic. I can be very hungry, then start to eat and fill up quickly. Other times I am not hungry at all, or nothing sounds good, so I have a hard time eating. Pretty much, I have lost all of the weight from being off the chemo for that month, and a little bit more. From my highest moment to now, 25 pounds total. I had bought a new pair of pants, as I do not have many pairs for the winter. I took them to my mom's to be shortened, and when I put them on, they no longer fit-very sloppy. Oh well!
I also find that I tire out much more easily. This is even more so because of the dreaded cough. I also seem to have aquired a cold, which has settled in my chest. The doctor put me on an antibiotic in hopes that it will not turn into anything else. I cannot get in to see the cardiologist until January 7th, so I will not have any answers as to being short of breath until then. Please continue to pray that the cough will begin to go away and that I will sleep at night without the feeling that my chest is heavy.
Last weekend, my mom and I were able to attend the Women of Faith's "It's a Grand New Day" in Sacramento. We went with some lovely ladies from our church. What a delightful time we had listening to Christian women make us laugh and think and sing. The first speaker was the dynamic and funny Patsy Clairmont. Towards the end of her turn, she shared that she has many fireflies in her life-those who bring moments of brightness in times of darkness. I want to share with you some of the fireflies who have brightened my life in the past few weeks of traveling through side effects and fatigue. When I first walked in to school sporting my lovely new rash, I showed it to the two ladies who run the office...and the school. Not a pretty sight, but one looked at me and said, "Danene, we think you are beautiful." I can't tell you how much that meant to me at that very moment. Since then, more colleagues than I can count have taken me aside to offer me a break in my class, to cover my yard duty, to spell me for a few minutes so I can catch my breath, just to let me know they care and are there for me. I have a very limited number of days for the year to use as sick days, so I am very selective in using them, and my collegues know that. What a comfort to know that if I just need a few moments, friends are there. What bright moments of light these fireflies have brought me.
I know that there are more fireflies in my life. In fact, if I was collecting, I believe I would have shelves full of jars full of fireflies who have brightened my days. Do you have fireflies in your life that you need to recognize and thank? And even more, can you be a firefly to someone else who is having a dark moment? This is a challenge to me, too. Find someone and be a bright light to them this week.
Glowing,
Danene
December 13, 2009
Wednesday, November 25, 2009
Giving Thanks
Hello Dear Friends,
It's been quite awhile since I last shared with you, and a lot has happened since then, so I'll do my best to catch you up.
As most of you know, I went off of the chemo I had been on for a year in order to clear it from my body so I could join a trial with a new drug mixed with one that would replace the Sutent. I was off of the Sutent for a month, then had an extensive blood test, new CT and bone scans, an EKG and an echocardiogram. During the time I was off of the drugs, I began to put on weight as well as swell in my feet, ankles, and calves. My feet were so swollen that I could not wear any of my shoes. It looked as if you could poke my legs and they would explode. It was very uncomfortable. At my appointment with Tammy, the nurse practicioner, on the day I was to start the new meds, the swelling was of great concern. We discussed the steroids I am on, and even brought up the possibility of whether or not I really had needed to be on them all this time. But she shared that what frequently happens when you are on steroids is that the gland you are using them to replace often grows lazy and will not do its job. So if I was to go off of the steroids to see if my body could sustain itself without them, I could be putting myself at a big risk that isn't worth it right now. So I will stay on them. At the end of the appointment, I met with the nurse and with the gal that coordinates the trial schedules, and I took the first dose of the new meds. This was a Thursday.
I did well on the new meds, learning from a counseling nurse that the side effects will probably be less than those I had experienced previously. I do not have a 28day on/14 day off cycle like before. These are taken continuously, only with a break should the side effects deem it necessary. The side effects build up slowly, then peak, then plateau, and those you are left with at the plateau are the ones you have to deal with over time. However, at work on the following Monday, I began to have an upset stomach and a slight headache that began to build as the afternoon progressed. I managed to finish the school day and make the drive home (which I will NEVER do again as it is a miracle I stayed on the road). By the time I got home, I realized that this was not a headache that was going to go away on its own or with a little sleep. By that time I had begun to throw up as well. I called UCSF and Tammy, the NP, called back with instructions to go to the ER immediately. They called ahead with plans for a brain scan and for an MRI to find out if the cancer had metastisized to my brain, if I had meningitis, was having a stroke or an aneurism. Wow. I was blessed to see the friendly face of Meghan's girl scout leader, who is an
Er nurse. She met us at the door and had a room prepped for me. I started on Zofran for the nausea and Dilaudid for the pain, and those continued after I was admitted and through the next noon, when I finally realized the pain had subsided. (Sidebar: The dilaudid supressed my cough for the entire time I was on it, so I had uniterrupted sleep while I was on it!) The CT and the MRI came back negative, so there is no clear explanation as to what caused the severe headache. I was released on Wednesday morning and was back to work on Thursday. I started back on the meds on Thursday as well. So far all is well and I ahve not had any other problems.
Mom and I were at UCSF again this past Monday (I have to go every other Monday for the next three months) and I saw the good doctor this time. I was able to show him that since I have been on the meds again, my swelling has gone away and I lost 15 pounds (that is how much I had gained!) So we discussed the steroids again, and it is our goal for me to get off of them eventually or at least be on the least amount possible. So we have cut one of the doses in half and I am just taking it every other day. I feel much better fitting into my shoes and pants again!
Dr. Ryan also had the results of my echocardiogram from a few weeks past. I knew he had something to share from it that I might not want to hear, so before he started I asked if there might ever be a time when I would come and there would be nothing new to go over. His personality showed through when he said, "One of these times, I'm going to walk in here and say, 'You're boring-go home!'" I look forward to that day! Anyways, my echo showed that the diastolic part of my heart beat, or when my heart should be at rest, shows a number of abnormalities. It's having to work too hard to do what it should be resting while doing. So I will be visiting a local cardiologist in the next week or so. I haven't been able to set up the appointment yet due to the holidays. Dr. Ryan seemed to think it was something that could be managed with medication (more pills!) I also want to discuss with this doctor the possibility that a few people have mentioned through their experiences that this cough I still have could be complicated by the blood pressure medicine I am on.
So for now, I continue the new meds, doing well on them as far as I can tell. I will see the cardiologist soon, and I return to UCSF on Dec. 7th. As for the holidays, there is much I give thanks for. As with so many of you, I am blessed with family and friends who have prayed and provided for and loved me beyond my worth. Awhile back, we sang "I Surrender All" in our church service, and I felt as though I was being asked to surrender the one biggest thing I wanted at that moment. Well, that would be to be healed. Now that doesn't mean that I don't think I still can be healed, or that God isn't going to do that for me. But it does mean that whether or not it happens, I can give that up and be thankful that it will not change my relationship with my Savior. I still am washed in the blood of the Lamb, am forgiven, and know that my future is secure with Him. I do have so much for which to be thankful.
Giving thanks for each of you this Thanksgiving,
Danene
November 25, 2009
It's been quite awhile since I last shared with you, and a lot has happened since then, so I'll do my best to catch you up.
As most of you know, I went off of the chemo I had been on for a year in order to clear it from my body so I could join a trial with a new drug mixed with one that would replace the Sutent. I was off of the Sutent for a month, then had an extensive blood test, new CT and bone scans, an EKG and an echocardiogram. During the time I was off of the drugs, I began to put on weight as well as swell in my feet, ankles, and calves. My feet were so swollen that I could not wear any of my shoes. It looked as if you could poke my legs and they would explode. It was very uncomfortable. At my appointment with Tammy, the nurse practicioner, on the day I was to start the new meds, the swelling was of great concern. We discussed the steroids I am on, and even brought up the possibility of whether or not I really had needed to be on them all this time. But she shared that what frequently happens when you are on steroids is that the gland you are using them to replace often grows lazy and will not do its job. So if I was to go off of the steroids to see if my body could sustain itself without them, I could be putting myself at a big risk that isn't worth it right now. So I will stay on them. At the end of the appointment, I met with the nurse and with the gal that coordinates the trial schedules, and I took the first dose of the new meds. This was a Thursday.
I did well on the new meds, learning from a counseling nurse that the side effects will probably be less than those I had experienced previously. I do not have a 28day on/14 day off cycle like before. These are taken continuously, only with a break should the side effects deem it necessary. The side effects build up slowly, then peak, then plateau, and those you are left with at the plateau are the ones you have to deal with over time. However, at work on the following Monday, I began to have an upset stomach and a slight headache that began to build as the afternoon progressed. I managed to finish the school day and make the drive home (which I will NEVER do again as it is a miracle I stayed on the road). By the time I got home, I realized that this was not a headache that was going to go away on its own or with a little sleep. By that time I had begun to throw up as well. I called UCSF and Tammy, the NP, called back with instructions to go to the ER immediately. They called ahead with plans for a brain scan and for an MRI to find out if the cancer had metastisized to my brain, if I had meningitis, was having a stroke or an aneurism. Wow. I was blessed to see the friendly face of Meghan's girl scout leader, who is an
Er nurse. She met us at the door and had a room prepped for me. I started on Zofran for the nausea and Dilaudid for the pain, and those continued after I was admitted and through the next noon, when I finally realized the pain had subsided. (Sidebar: The dilaudid supressed my cough for the entire time I was on it, so I had uniterrupted sleep while I was on it!) The CT and the MRI came back negative, so there is no clear explanation as to what caused the severe headache. I was released on Wednesday morning and was back to work on Thursday. I started back on the meds on Thursday as well. So far all is well and I ahve not had any other problems.
Mom and I were at UCSF again this past Monday (I have to go every other Monday for the next three months) and I saw the good doctor this time. I was able to show him that since I have been on the meds again, my swelling has gone away and I lost 15 pounds (that is how much I had gained!) So we discussed the steroids again, and it is our goal for me to get off of them eventually or at least be on the least amount possible. So we have cut one of the doses in half and I am just taking it every other day. I feel much better fitting into my shoes and pants again!
Dr. Ryan also had the results of my echocardiogram from a few weeks past. I knew he had something to share from it that I might not want to hear, so before he started I asked if there might ever be a time when I would come and there would be nothing new to go over. His personality showed through when he said, "One of these times, I'm going to walk in here and say, 'You're boring-go home!'" I look forward to that day! Anyways, my echo showed that the diastolic part of my heart beat, or when my heart should be at rest, shows a number of abnormalities. It's having to work too hard to do what it should be resting while doing. So I will be visiting a local cardiologist in the next week or so. I haven't been able to set up the appointment yet due to the holidays. Dr. Ryan seemed to think it was something that could be managed with medication (more pills!) I also want to discuss with this doctor the possibility that a few people have mentioned through their experiences that this cough I still have could be complicated by the blood pressure medicine I am on.
So for now, I continue the new meds, doing well on them as far as I can tell. I will see the cardiologist soon, and I return to UCSF on Dec. 7th. As for the holidays, there is much I give thanks for. As with so many of you, I am blessed with family and friends who have prayed and provided for and loved me beyond my worth. Awhile back, we sang "I Surrender All" in our church service, and I felt as though I was being asked to surrender the one biggest thing I wanted at that moment. Well, that would be to be healed. Now that doesn't mean that I don't think I still can be healed, or that God isn't going to do that for me. But it does mean that whether or not it happens, I can give that up and be thankful that it will not change my relationship with my Savior. I still am washed in the blood of the Lamb, am forgiven, and know that my future is secure with Him. I do have so much for which to be thankful.
Giving thanks for each of you this Thanksgiving,
Danene
November 25, 2009
Wednesday, October 28, 2009
Results From a LONG Day!
Hi Again, Friends,
Just one day after Mom and I traveled back and forth on the Bay Bridge, that cable broke and backed up/suspended traffic. Thank you, Lord, for Your timing!
We hit the road Monday morning at 6:45 and I didn't drive back into my garage until 8:10 pm. It was a LONG day at UCSF. I'll do my best to walk you through the day and share what we found out.
I started on the hill at Parnassus with a Pulmonary Function Test. I had to do a number of different breathing functions that seemed to truly stretch the limits of my lungs. The technicians that worked with me, Tyler and Kelly, were very patient as we worked around the cough trying to get three good averages from each test. Sometimes it took up to seven tries to get those three good ones. I also had a blood draw from an artery near my wrist to see what my blood gas level is. The directions were to not move and to breath, which was a bit hard considering they couldn't get it on the first try, so had to move the needle around to try to find it. They got it on the second try. By the time I was done, I was kind of exhausted, and that was only the first appointment!
Next was the injection for the bone scan, which involved an IV. The tech, Collette (and yes, she had a French accent!), was kind enough to leave the IV in so I wouldn't need another one for the CT scans. However, when I made it to the appointment for the scans, my creatinine level was borderline again, so they wouldn't let me have the contrast dye, which meant the IV came out as it was not needed. I don't remember the name of the man who took the scans, but he was so patient with me as I had to lie flat on my back and not move-quite a feat given I haven't been flat on my back for a couple of weeks due to the cough, and when I do lie flat, I cough, which I couldn't do during the scan! So we worked out a little system where I would cough until whatever was trying to come up did, then he would start the scan, I would hold my breath for the necessary part, then start over again. All in all, he said the scans came out very clear even without the dye.
I had to lie flat on my back for the bone scan, also, with the box that took the pictures literally nose to nose with me. I could cough, but couldn't cover it with my hands or turn my head. The scan took about 20 minutes. As it started, I could feel myself begin to hyperventilate as I tried not to cough. I had put a cough drop in, but it wasn't helping, so I frantically began to recite scripture and sing worship songs in my head...and God met me there. My breathing began to regulate, I calmed down, and the scan made it all the way to my feet before I began to cough. The technician quickly had the doctor check the scan, declared it great, and I was done!
By now we were late for my appointment with the good doctor, so we headed to Mt. Zion, not knowing what to expect. The 'what' was a LONG wait. My appointment was for 2:30, we got there around 3:15, and saw the doctor and the NP two and a half hours later, around 5:45. In between, I thought I would go crazy. We looked at every page of every magazine in the waiting rooms, none of which are very current, shared some Jelly Bellies my mom found in the bottom of her bag from a trip to the factory some two years ago!, memorized the medical forms lining the wall, stared into space, and fell just short of taking a nap. I did get to meet the nurse, Jay, who I talk to on the phone on a regular basis. That was a nice moment. When the NP and then the doctor finally walked in, we asked if we should order out for dinner!
The good thing about it being so late is that all of the results for the tests were available excepting the bone scan. The Pulmonary Function Test showed that I do not have asthma (go figure!), so I have suspended the use of one of the inhalers and only use the albuterol if I really need it. There is one result that caused a bit of concern, and it is the one thing I didn't write down, so I will have to check with the doctor to be completely sure I got this right, but it was something to do with how well oxygen is absorbed into the blood from my lungs. I am at 64 % of normal in this one (if I got this right), and normal is anything above 80%. What this means for me is unsure at the moment.
I had a CT scan of the brain this time (Matt actually had the audacity to ask me if it meant I have a brain-which, YES, Matt, I do!), and it showed nothing abnormal-so there! The chest scan showed that the nodule that has shown growth before showed about the same amount of growth once again. It also showed what they think might be a good part of the cause of this dreaded cough. I have a lymphangitic growth in my lung, which has been there before, and unlike the nodule, which has defined edges, this does not, appearing as if it creeps or spreads as it grows. The CT of the abdomen showed a small mass in the soft tissue near my colon, which has been there before, but it also showed a new small mass near the other one.
So taking all of that information, we began to address one issue at a time. First of all, I have been retaining water, as my ankles and feet, hands, and some other areas have swelled up quite a bit and quickly. This could also affect the cough, which has been wet and wild. So I am taking a diuretic to help get rid of some of the excess water, and am taking a stronger dose of codeine to help suppress the cough. I started on it last night, and it did help me sleep (I even slept somewhat lying down, not sitting up against the back of the couch!), only waking up once for a short coughing fit. I have to take it on a regular basis, though, so will fight through the sleepiness until my body regulates to it, and will deal with the not so fun side effects of constipation. All for a good night's sleep! Today I felt a little better, only having one bad coughing fit when something hit my throat wrong and set me off. Second, my phosphorus is quite low, so I have to take tablets for that, as well as magnesium. Third, the kids and I had our seasonal flu shots today, and are waiting for the H1N1 to become available.
Lastly, I signed the papers to enter into the trial for the new medicine, Everolimus, along with the replacement one for Sutent, Nexavar. I will travel back to UCSF on November 12th to actually get the new medicine and begin the first treatment, which I will continue orally at home. The treatment, as best I understand, is ongoing, not on a cycle like I've been on up to now. Matt and I have gone over all of the possible side effects and have decided we will just wait and see what happens rather than speculate and panic. The one thing we will pray about, and ask you to pray about as well, is that the balance of doses between the two medicines is correct for me, and doesn't turn toxic. Wow, when it's said that way, it doesn't sound so great.
I'll leave you with some of the words to a song I have grown to love since I first heard it on its release. It's by a band named Kutless, and I'm sure you've heard it on KLOVE. It's called, "What Faith Can Do." The words to this song say just what I have based my walk with cancer on: FAITH.
"It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!"
Keep walking in that faith, my friends.
Danene
October 28, 2009
Just one day after Mom and I traveled back and forth on the Bay Bridge, that cable broke and backed up/suspended traffic. Thank you, Lord, for Your timing!
We hit the road Monday morning at 6:45 and I didn't drive back into my garage until 8:10 pm. It was a LONG day at UCSF. I'll do my best to walk you through the day and share what we found out.
I started on the hill at Parnassus with a Pulmonary Function Test. I had to do a number of different breathing functions that seemed to truly stretch the limits of my lungs. The technicians that worked with me, Tyler and Kelly, were very patient as we worked around the cough trying to get three good averages from each test. Sometimes it took up to seven tries to get those three good ones. I also had a blood draw from an artery near my wrist to see what my blood gas level is. The directions were to not move and to breath, which was a bit hard considering they couldn't get it on the first try, so had to move the needle around to try to find it. They got it on the second try. By the time I was done, I was kind of exhausted, and that was only the first appointment!
Next was the injection for the bone scan, which involved an IV. The tech, Collette (and yes, she had a French accent!), was kind enough to leave the IV in so I wouldn't need another one for the CT scans. However, when I made it to the appointment for the scans, my creatinine level was borderline again, so they wouldn't let me have the contrast dye, which meant the IV came out as it was not needed. I don't remember the name of the man who took the scans, but he was so patient with me as I had to lie flat on my back and not move-quite a feat given I haven't been flat on my back for a couple of weeks due to the cough, and when I do lie flat, I cough, which I couldn't do during the scan! So we worked out a little system where I would cough until whatever was trying to come up did, then he would start the scan, I would hold my breath for the necessary part, then start over again. All in all, he said the scans came out very clear even without the dye.
I had to lie flat on my back for the bone scan, also, with the box that took the pictures literally nose to nose with me. I could cough, but couldn't cover it with my hands or turn my head. The scan took about 20 minutes. As it started, I could feel myself begin to hyperventilate as I tried not to cough. I had put a cough drop in, but it wasn't helping, so I frantically began to recite scripture and sing worship songs in my head...and God met me there. My breathing began to regulate, I calmed down, and the scan made it all the way to my feet before I began to cough. The technician quickly had the doctor check the scan, declared it great, and I was done!
By now we were late for my appointment with the good doctor, so we headed to Mt. Zion, not knowing what to expect. The 'what' was a LONG wait. My appointment was for 2:30, we got there around 3:15, and saw the doctor and the NP two and a half hours later, around 5:45. In between, I thought I would go crazy. We looked at every page of every magazine in the waiting rooms, none of which are very current, shared some Jelly Bellies my mom found in the bottom of her bag from a trip to the factory some two years ago!, memorized the medical forms lining the wall, stared into space, and fell just short of taking a nap. I did get to meet the nurse, Jay, who I talk to on the phone on a regular basis. That was a nice moment. When the NP and then the doctor finally walked in, we asked if we should order out for dinner!
The good thing about it being so late is that all of the results for the tests were available excepting the bone scan. The Pulmonary Function Test showed that I do not have asthma (go figure!), so I have suspended the use of one of the inhalers and only use the albuterol if I really need it. There is one result that caused a bit of concern, and it is the one thing I didn't write down, so I will have to check with the doctor to be completely sure I got this right, but it was something to do with how well oxygen is absorbed into the blood from my lungs. I am at 64 % of normal in this one (if I got this right), and normal is anything above 80%. What this means for me is unsure at the moment.
I had a CT scan of the brain this time (Matt actually had the audacity to ask me if it meant I have a brain-which, YES, Matt, I do!), and it showed nothing abnormal-so there! The chest scan showed that the nodule that has shown growth before showed about the same amount of growth once again. It also showed what they think might be a good part of the cause of this dreaded cough. I have a lymphangitic growth in my lung, which has been there before, and unlike the nodule, which has defined edges, this does not, appearing as if it creeps or spreads as it grows. The CT of the abdomen showed a small mass in the soft tissue near my colon, which has been there before, but it also showed a new small mass near the other one.
So taking all of that information, we began to address one issue at a time. First of all, I have been retaining water, as my ankles and feet, hands, and some other areas have swelled up quite a bit and quickly. This could also affect the cough, which has been wet and wild. So I am taking a diuretic to help get rid of some of the excess water, and am taking a stronger dose of codeine to help suppress the cough. I started on it last night, and it did help me sleep (I even slept somewhat lying down, not sitting up against the back of the couch!), only waking up once for a short coughing fit. I have to take it on a regular basis, though, so will fight through the sleepiness until my body regulates to it, and will deal with the not so fun side effects of constipation. All for a good night's sleep! Today I felt a little better, only having one bad coughing fit when something hit my throat wrong and set me off. Second, my phosphorus is quite low, so I have to take tablets for that, as well as magnesium. Third, the kids and I had our seasonal flu shots today, and are waiting for the H1N1 to become available.
Lastly, I signed the papers to enter into the trial for the new medicine, Everolimus, along with the replacement one for Sutent, Nexavar. I will travel back to UCSF on November 12th to actually get the new medicine and begin the first treatment, which I will continue orally at home. The treatment, as best I understand, is ongoing, not on a cycle like I've been on up to now. Matt and I have gone over all of the possible side effects and have decided we will just wait and see what happens rather than speculate and panic. The one thing we will pray about, and ask you to pray about as well, is that the balance of doses between the two medicines is correct for me, and doesn't turn toxic. Wow, when it's said that way, it doesn't sound so great.
I'll leave you with some of the words to a song I have grown to love since I first heard it on its release. It's by a band named Kutless, and I'm sure you've heard it on KLOVE. It's called, "What Faith Can Do." The words to this song say just what I have based my walk with cancer on: FAITH.
"It doesn't matter what you've heard
Impossible is not a word
It's just a reason for someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can!"
Keep walking in that faith, my friends.
Danene
October 28, 2009
Sunday, October 25, 2009
A Full Day at UCSF
Hi, Friends,
Tomorrow my mom and I head to UCSF for a full day. We'll hit the road at 6:45 am for the first appointment at 9:15 at the main hospital at Parnassus for a Pulmonary Function Test. I still have the dreaded cough, and haven't been able to use either inhaler for the day in anticipation of this test. Hopefully we'll get some answers and some results, as nothing has worked well so far.
I head down the street for an injection for a bone scan at 11:00, head back to Parnassus for my CT Scans at 12:15, then back to the other facility for the actual bone scan at 2:00. And a scant half-hour after that, I meet with Dr. Ryan at Mt. Zion. Wow! I hope I can keep up with all of that. We should be done just about in time to sit in traffic on the way home.
Most of these tests are in preparation for the trial I am entering. I'll have more of the details on that, and hopefully all of the results of the tests, in the next few days, so will keep you posted.
One good thing from the blood test I had this past week is that my thyroid stimulating hormone, with the help of the thyroid replacement therapy, is finally showing itself to be in the normal range. I think if I was not fighting with this cough and all that goes with it, I would feel pretty good.
So, I get a full four weeks off between finishing Sutent 10 days ago and starting the new trial meds. If I can kick the cough, and figure out why I am swelling in my feet and ankles and elsewhere (perhaps from the steroids? argh!), it could be a nice break to recover, enjoy those foods I usually can't tolerate, and do all the things that have to wait for those breaks from the meds, like go to the dentist, get my hair back to normal, get flu and pneumonia shots, clean up my feet, and so on.
Because of this cough, this has been a rough month. I haven't slept in my bed for a couple of weeks, as lying down causes the mucus to sit in my throat and chest, so I prop up over the edge of the couch and sleep as long as I can, usually 2-3 hours before the coughing takes over. Then it's dozing until morning. I'm sure my family is as tired as I am of hearing the constant hacking. It's time for this to be over!
I was reminded anew, as I read a devotional the other night, that God hasn't forgotten what's going on in my life. He is still very aware of each thing I go through. He knew before it happened that it would happen. That is a comfort to me in those times of feeling cruddy and sorry for myself. He's there, He loves me, He's with me even when I cry out to Him for it to GO AWAY and it doesn't. He has not forgotten me. I will stand on that truth and wait for what His purpose is in all of this.
More soon,
Danene
October 25, 2009
Tomorrow my mom and I head to UCSF for a full day. We'll hit the road at 6:45 am for the first appointment at 9:15 at the main hospital at Parnassus for a Pulmonary Function Test. I still have the dreaded cough, and haven't been able to use either inhaler for the day in anticipation of this test. Hopefully we'll get some answers and some results, as nothing has worked well so far.
I head down the street for an injection for a bone scan at 11:00, head back to Parnassus for my CT Scans at 12:15, then back to the other facility for the actual bone scan at 2:00. And a scant half-hour after that, I meet with Dr. Ryan at Mt. Zion. Wow! I hope I can keep up with all of that. We should be done just about in time to sit in traffic on the way home.
Most of these tests are in preparation for the trial I am entering. I'll have more of the details on that, and hopefully all of the results of the tests, in the next few days, so will keep you posted.
One good thing from the blood test I had this past week is that my thyroid stimulating hormone, with the help of the thyroid replacement therapy, is finally showing itself to be in the normal range. I think if I was not fighting with this cough and all that goes with it, I would feel pretty good.
So, I get a full four weeks off between finishing Sutent 10 days ago and starting the new trial meds. If I can kick the cough, and figure out why I am swelling in my feet and ankles and elsewhere (perhaps from the steroids? argh!), it could be a nice break to recover, enjoy those foods I usually can't tolerate, and do all the things that have to wait for those breaks from the meds, like go to the dentist, get my hair back to normal, get flu and pneumonia shots, clean up my feet, and so on.
Because of this cough, this has been a rough month. I haven't slept in my bed for a couple of weeks, as lying down causes the mucus to sit in my throat and chest, so I prop up over the edge of the couch and sleep as long as I can, usually 2-3 hours before the coughing takes over. Then it's dozing until morning. I'm sure my family is as tired as I am of hearing the constant hacking. It's time for this to be over!
I was reminded anew, as I read a devotional the other night, that God hasn't forgotten what's going on in my life. He is still very aware of each thing I go through. He knew before it happened that it would happen. That is a comfort to me in those times of feeling cruddy and sorry for myself. He's there, He loves me, He's with me even when I cry out to Him for it to GO AWAY and it doesn't. He has not forgotten me. I will stand on that truth and wait for what His purpose is in all of this.
More soon,
Danene
October 25, 2009
Friday, October 2, 2009
A note from Danene's husband and partner in life.
Hey all,
Over the past couple of days I have been just overwhelmed with something I need to share. As most of you know, a year ago Danene had what we know as life saving surgery to remove her left kidney. During the recovery process in the hospital something happened to our relationship. There were three nights in a row that I stayed the night to get her through the painful recovery from the surgery. There were a lot of sleepless moments. But in the morning about 4:00-4:30 the great nursing staff would start to make their rounds to get ready for the doctors 6 am rounds. This proved to be some of the best times that we have ever had together.
As we would wake, we would start to talk, sharing life together and just talking about everything, and we would pray together. During this time in the hospital there was more healing taking place than just in Danene’s body. God was working on our relationship with each other as well as our relationship with him. “Husbands love your wife as Christ loves the church” Ephesians 5:25. I was not doing my job very well, and it’s something I have to work at everyday. God helps me with this process daily but only when I ask Him and allow Him to have control over my life. God has given us the second greatest gift He could give us: our wife; the greatest gift is His Son, Jesus. Guys, if you keep the relationship right with Jesus, He will help you keep your relationship right with your wife. You all just need to be thankful for the gift that God the Father has given us. Love the wife that completes you, cares for you, feeds you, cares for your kids, and loves you in spite of all of your shortcomings. Providing for her needs is just not going to work and bringing home the bacon.
Each morning when I wake it brings me joy to see my wife breathing, sleeping, and recovering from yet another day of meds. I just have to stop and give thinks for this gift that God has given. I will get on my knees before God and give Him the praise and thanks that He deserves. This past year has brought us through a lot of ups and downs as Danene battles with this wretched disease. We continue to serve God and we stand on the promise that “Everything is possible for him who believes in Christ Jesus” Mark 9:23. Some of you ask us “what can we do for you guys?” I would say to you to love your wife/husband so that you can be a good witness to your kids, family, and the world around you. Share the love Jesus showed us when he died on the cross to those around you and fulfill the great commission.
Danene and I will not question why it has come to pass that she got cancer. We will only hope that God will be glorified with our walk with Him through this process. Please continue to pray for us and for Danene’s healing, but only after you have prayed for your spouse.
In God’s Love, we are thankful for you all,
Matt (Danene’s husband and partner in life).
Over the past couple of days I have been just overwhelmed with something I need to share. As most of you know, a year ago Danene had what we know as life saving surgery to remove her left kidney. During the recovery process in the hospital something happened to our relationship. There were three nights in a row that I stayed the night to get her through the painful recovery from the surgery. There were a lot of sleepless moments. But in the morning about 4:00-4:30 the great nursing staff would start to make their rounds to get ready for the doctors 6 am rounds. This proved to be some of the best times that we have ever had together.
As we would wake, we would start to talk, sharing life together and just talking about everything, and we would pray together. During this time in the hospital there was more healing taking place than just in Danene’s body. God was working on our relationship with each other as well as our relationship with him. “Husbands love your wife as Christ loves the church” Ephesians 5:25. I was not doing my job very well, and it’s something I have to work at everyday. God helps me with this process daily but only when I ask Him and allow Him to have control over my life. God has given us the second greatest gift He could give us: our wife; the greatest gift is His Son, Jesus. Guys, if you keep the relationship right with Jesus, He will help you keep your relationship right with your wife. You all just need to be thankful for the gift that God the Father has given us. Love the wife that completes you, cares for you, feeds you, cares for your kids, and loves you in spite of all of your shortcomings. Providing for her needs is just not going to work and bringing home the bacon.
Each morning when I wake it brings me joy to see my wife breathing, sleeping, and recovering from yet another day of meds. I just have to stop and give thinks for this gift that God has given. I will get on my knees before God and give Him the praise and thanks that He deserves. This past year has brought us through a lot of ups and downs as Danene battles with this wretched disease. We continue to serve God and we stand on the promise that “Everything is possible for him who believes in Christ Jesus” Mark 9:23. Some of you ask us “what can we do for you guys?” I would say to you to love your wife/husband so that you can be a good witness to your kids, family, and the world around you. Share the love Jesus showed us when he died on the cross to those around you and fulfill the great commission.
Danene and I will not question why it has come to pass that she got cancer. We will only hope that God will be glorified with our walk with Him through this process. Please continue to pray for us and for Danene’s healing, but only after you have prayed for your spouse.
In God’s Love, we are thankful for you all,
Matt (Danene’s husband and partner in life).
Wednesday, September 23, 2009
It's Been a Year
Dear Friends,
One year ago today, Matt, my mom, and I sat in the doctor's office and had it confirmed that I had kidney cancer. Two days later, after two nights in the ER, I would be admitted to the hospital. Oh my, what a year it has been since that day. On that day, I don't think I would have thought it possible to say this, but it has been a year for which I now have an abundance of things to give thanks for.
From that day forward, Matt and I had to decide just how much we believed in the God we have always followed and trusted in. Would we love Him and follow Him if things didn't go the way we wanted them to? Could we stand firmly on His Word even when we doubted? Would He be enough to get us through the many unknowns we would have to face? To all, we can unreservedly say YES! He has proven Himself to be truth, to be patient, to be compassionate, to be our comforter, to be our wisdom, to be God. I couldn't have made it this far without Him. I give my eternal thanks to Him.
This year has been full of family and friends...phone calls, caring words, shared Bible verses, cards and emails, meals, invitations to my kids to spend days and nights with friends, people who have cleaned and ironed and cooked and did so many things that I would never have asked for but they were willing to do anyway. I am beyond grateful.
And it's been a year of prayer. Your prayers for me and my husband and kids, for my family, for my doctors, for treatments and side effects, for wisdom in making decisions, for strength in times of weakness and doubt, and for healing. Your prayers have sustained me.
I don't know what the next year holds, I just know that God is continuing to grow me into the woman He wants me to be. It isn't easy, it isn't really something I want to go through, but if it is drawing me closer to Him, molding me to be more like Him, and making me bolder to share Him, then so it will be.
I will continue to give thanks,
Danene
September 23, 2009
One year ago today, Matt, my mom, and I sat in the doctor's office and had it confirmed that I had kidney cancer. Two days later, after two nights in the ER, I would be admitted to the hospital. Oh my, what a year it has been since that day. On that day, I don't think I would have thought it possible to say this, but it has been a year for which I now have an abundance of things to give thanks for.
From that day forward, Matt and I had to decide just how much we believed in the God we have always followed and trusted in. Would we love Him and follow Him if things didn't go the way we wanted them to? Could we stand firmly on His Word even when we doubted? Would He be enough to get us through the many unknowns we would have to face? To all, we can unreservedly say YES! He has proven Himself to be truth, to be patient, to be compassionate, to be our comforter, to be our wisdom, to be God. I couldn't have made it this far without Him. I give my eternal thanks to Him.
This year has been full of family and friends...phone calls, caring words, shared Bible verses, cards and emails, meals, invitations to my kids to spend days and nights with friends, people who have cleaned and ironed and cooked and did so many things that I would never have asked for but they were willing to do anyway. I am beyond grateful.
And it's been a year of prayer. Your prayers for me and my husband and kids, for my family, for my doctors, for treatments and side effects, for wisdom in making decisions, for strength in times of weakness and doubt, and for healing. Your prayers have sustained me.
I don't know what the next year holds, I just know that God is continuing to grow me into the woman He wants me to be. It isn't easy, it isn't really something I want to go through, but if it is drawing me closer to Him, molding me to be more like Him, and making me bolder to share Him, then so it will be.
I will continue to give thanks,
Danene
September 23, 2009
Wednesday, September 16, 2009
A Short Update
Okay, Friends,
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
I got the results from the radiologist, and I will tell you what I can, but most of it is in language that I don't totally understand, even with my Medical Terminology for Dummies book at my side. They couldn't use a contrast dye during the scans this time because my creatinine level was on the high side, so the findings weren't as clear as in the past.
On the chest scan, there is an increase in size and number of noncalcified pulmonary (lungs) nodules. In the left lower lobe, the nodule appears to be slightly more nodular and enlarged at 1.4 cm x 2.2 cm. (previously .7 cm x 2.0 cm.) There is also development of pleural effusions, which is the escape of fluid into the pleural cavity, which surrounds the lungs. That is the part that could or could not involve my cough. The doctor just isn't sure. There also is evidence that some of my lymph nodes show progression of the disease.
On the abdomen/pelvic scan, there is a soft tissue mass in the left lower quadrant that has increased in size from 1.5 cm to 2.2 cm. All of this is consistent with metastatic progression.
So, here's the thing. All of that says that the disease is still trying to win, but I'm still in the fight. So join me as I hit my knees, figuratively and literally, and turn it all over to God. I may not understand completely what is happening, but He knows, and I trust Him with my life.
Love you all,
Danene
September 16, 2009
Monday, September 14, 2009
A Chuckle for the Day
Well, Friends,
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
I think this time circumstances call for me to begin with a little levity. So here's your chuckle for the day:
Is My Duck Dead?
A woman brought a very limp duck into a veterinary surgeon. As she laid her pet on the table, the vet pulled out his stethoscope and listened to the bird's chest. After a moment or two, the vet shook his head sadly and said, "I'm sorry, your duck, Cuddles, has passed away." The distressed woman wailed, "Are you sure?" "Yes, I am sure. The duck is dead." replied the vet. "How can you be so sure?" she protested. "I mean, you haven't done any testing on him or anything. He might just be in a coma or something." The vet rolled his eyes, turned around and left the room. He returned a few minutes later with a black Labrador Retriever. As the duck's owner looked on in amazement, the dog stood on his hind legs, put his front paws on the examination table and sniffed the duck from top to bottom. He then looked up at the vet with sad eyes and shook his head. The vet patted the dog on the head and took it out of the room. A few minutes later he returned with a cat. The cat jumped on the table and also delicately sniffed the bird from head to foot. The cat sat back on its haunches, shook its head, meowed softly and strolled out of the room. The vet looked at the woman and said, "I'm sorry, but as I said, this is most definitely, 100% certifiably, a dead duck." The vet turned to his computer terminal, hit a few keys and produced a bill, which he handed to the woman. The duck's owner, still in shock, took the bill. "$150!" she cried, "$150 just to tell me my duck is dead?" The vet shrugged, "I'm sorry. If you had just taken my word for it, the bill would have been $20. But with the Lab report and the Cat scan, it's now $150."
When you're done laughing, I'll fill you in the fact that Matt and I spent the day in San Francisco. I had my CT scans done early this morning at UCSF's China Basin facility, then we had the chance to stroll around near Union Square for awhile, and ate at the most wonderful hole-in-the-wall place called Dottie's. Undeniably one of the best breakfasts I have had in a long while, and a joy to sit at the counter and watch the two cooks at the stove create. By 12:30, we were at Mount Zion meeting with Dr. Ryan.
While we had my blood test results, and the doctor had seen my chest scan, we did not have the rest of the scans nor the radiologist's report yet. So I will have to update you as I receive those results from the doctor in the next few days. My blood test showed that my creatinine level was high (in short, the amount of waste that my kidney allows through), and that my liver functions were high. These are both attributed to the Sutent, and the creatine also to the fact that I only have one kidney. My thyroid's TSH level, if you recall, was extremely low last time, and this time the TSH was almost five times higher than the highest normal level. So I will begin on thyroid replacement to see if it can be helped, and hopefully in the process will gain some energy and have some other things straighten out.
My cough is not better, and the good doctor is not sure exactly what to attribute it to. It could be just seasonal, but it also could be a result of what is going on in my lungs. Again, I don't have all the details yet, so be patient as we continue to receive information and confirm things, but it appears there could be some sort of pneumococcal growth, as well as at least one nodule that has continued to grow. The Sutent is not 'not working', but it is not working to the degree that it needs to be. With many kinds of chemo, when it is not working, it is in the best interests of the patient to take them off of it. That is not the case with this kind of chemo. Sutent is a chemo that creates a kind of wall between the cancer and its ability to receive oxygen and grow. On the other side of the wall, it is possible for the blocked effects to begin to back up and build, so that if you were to abruptly remove the 'wall', it could advance with greater force, causing the cancer to have a big growth spurt of sorts. There are other types of this same chemo I could try, but right now UCSF and a manufacturer are at the end of a phase of a trial that the doctor would like me to look into that might provide a better attack. It would involve taking a different form of this same type of chemo, but simultaneously taking a second form of a different type of chemo that attacks kidney cancer in another way. If the doctor running the trial, and her team, which includes my doctor, feels that I am a good fit for this, it would put me in the second phase of this trial, which is to see how this combination attacks kidney cancer. This second drug is FDA approved, and the patients in the first phase have participated to see what is the highest level of this chemo that can be taken with the other one, with the lowest bad side effects. I have a lot of respect for those patients.
Since there are still some administrative things going on with phase one of the trial, I will go on one more round of Sutent starting Thursday night, then meet with Dr. Ryan in six weeks to make some decisions as to what is next. I will hear from the doctor who heads up the trial in the next few days, to learn more and have many questions answered.
Matt and I have sat in many doctor's offices over the past year, and we have heard many different things that have changed our lives in ways we would have never dreamed of. My attitude has always been that I just need to know what you want me to do and I will do it. I'm ready to fight, and I'm in it for the long haul. But today hurt, and for the first time, I cried on the way home. Then as I listened on my iPod to a Michael W. Smith song, I was struck by these words:
"And even now that I'm inside your hands
Help me not to grow prideful again
Don't let me forsake sacrifice
Jesus, You be lifted high
And if I'm blessed with the riches of kings
How could I ever think that it was me
For You brought me from darkness to light
Jesus, You be lifted high"
For the first time, it was as if I was hearing God tell me to get out of the way and let Him. Whatever happens, whatever the fight, whatever the course of action, do my part, but leave the rest to Him. He will take care of the long haul, whatever it may be, and in the end I just need to fall to my knees so it's Him that you see, not me.
Help me hold true to that, my friends. Continue to pray for my family, and especially my husband. Take the time to ask him how HE is doing, not how I am doing. I would appreciate that. I love you all.
Danene
September 14, 2009
Thursday, September 3, 2009
I'm Singing
Hi, Friends,
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
Round Seven is over! It felt good knowing I did not have to take a pill tonight. It's been a tough week. Last Friday I ended up missing school and went to the doctor instead. I had a sinus infection (am taking penicillin but am doing much better), and that dreaded cough from the year before returned, so the doctor changed the type of inhaler I am using to one that is longer lasting and more preventative. It finally feels like it might be working as I am not coughing quite as often, but still deeply. The end of the meds hit hard with tiredness, pretty bad spots on my thumbs and one of my fingers, bruises appearing out of nowhere, and spots of hair thinning and breaking. So I get a two week break to recover, have a blood test, and find out just what good the medicine is doing with another set of scans. It's hard not to get anxious around this time, wondering about the unknown.
Kari Jobe is a favorite singer of mine. She has the most pure and beautiful voice and can make a song touch your soul. She sings a song called 'I'm Singing", about singing to the God who brings redemption to the nations; the One who wrote the book on our salvation; who covers us in grace. I'm singing praise to the One who wrote the lines of my life. I'm singing about things like a husband who has stood by me through more than he ever thought he would have to this past year. I'm sure he would like to not hear anything about cancer for a day or two from me or anyone else. But, nonetheless, he hears about it daily in some form or reminder or so. When I woke him up just 15 minutes before the alarm was to go off this morning, and asked him to pray for the muscles in my abdomen that were spasming from the coughing, he rolled over, put his hands on me, and began praying to the One we know listens to the cries of our hearts. And as he prayed, I began to relax and felt the pain slowly begin to slip from my body. There are many times in our lives that we feel far from being in the singing mood. Perhaps those are the times we most need to find reasons to sing. What are you singing about today? I'm sure there is something that you can find to sing praises about to the One who has done so much for you.
Sing!
Danene
September 3, 2009
Tuesday, August 25, 2009
Hosanna in the Highest
Hi, Friend,
I had the chance to take my son to church camp in the hills of Watsonville for a couple of days last week. My daughter was already there. What a wonderfully peaceful and relaxing time. It was fun to watch my kids and their friends play and work together, and worship God as they learned more about Him and themselves. There was an incredible worship band, too, and they sang this one song with us, called Hosanna. One of the lines talked about worshipping the Lord as we pass from earth into eternity, then moves into a chorus of Hosannas. As we were singing, my husband's aunt, who has fought a battle with cancer for a long time, came to mind. She had just been moved to a Hospice facility, so we knew her time was near the end, and for some reason, I began to picture her as she entered the presence of her Lord, and how she would soon have the chance to worship Him in person. This morning, on her birthday, she lost that battle with cancer. She left behind a body that was full of disease, that couldn't support her, that was full of pain, and entered the presence of the Perfect One, the Healer, the Creator.
I need you to know that that is what keeps me going. It's called hope. I grow weary of the fight, the things that go with it, never giving up, but just weary sometimes. It has become part of my life, and for the most part, something that I don't overly dwell on, but at the same time, it never goes away. However, through it all I stand on the hope that comes only from a relationship with Jesus. I know that in the good and in the bad times, He is with me, He never changes, He is enough to see me through. This is just life on earth, wonderful at times, but nothing compared to what is in store for us in Heaven. I am sad at the loss of our aunt, but so very happy that she is whole and complete and with Jesus.
As an update, I am in the third week of this seventh round of chemo. I started school last week, still job sharing the position but with a new partner, and really like my class of 26 kids. I'm feeling well, overall, with no new side effects but several regular ones that are irritating, and an overlying feeling of being tired all the time. Matt and I will head to UCSF on September 14th, where I will have CT scans in the morning, and see the good doctor that same afternoon to go over the results as well as those of my blood test. I feel your prayers on a daily basis, and am thankful for those of you who have made me a permanent name on your prayer list. I will ask that those of you that know my husband's family will prayer for his mom and her two sisters as they face the loss of their sister, and for the families as well.
Walking in Hope,
Danene
August 25, 2009
I had the chance to take my son to church camp in the hills of Watsonville for a couple of days last week. My daughter was already there. What a wonderfully peaceful and relaxing time. It was fun to watch my kids and their friends play and work together, and worship God as they learned more about Him and themselves. There was an incredible worship band, too, and they sang this one song with us, called Hosanna. One of the lines talked about worshipping the Lord as we pass from earth into eternity, then moves into a chorus of Hosannas. As we were singing, my husband's aunt, who has fought a battle with cancer for a long time, came to mind. She had just been moved to a Hospice facility, so we knew her time was near the end, and for some reason, I began to picture her as she entered the presence of her Lord, and how she would soon have the chance to worship Him in person. This morning, on her birthday, she lost that battle with cancer. She left behind a body that was full of disease, that couldn't support her, that was full of pain, and entered the presence of the Perfect One, the Healer, the Creator.
I need you to know that that is what keeps me going. It's called hope. I grow weary of the fight, the things that go with it, never giving up, but just weary sometimes. It has become part of my life, and for the most part, something that I don't overly dwell on, but at the same time, it never goes away. However, through it all I stand on the hope that comes only from a relationship with Jesus. I know that in the good and in the bad times, He is with me, He never changes, He is enough to see me through. This is just life on earth, wonderful at times, but nothing compared to what is in store for us in Heaven. I am sad at the loss of our aunt, but so very happy that she is whole and complete and with Jesus.
As an update, I am in the third week of this seventh round of chemo. I started school last week, still job sharing the position but with a new partner, and really like my class of 26 kids. I'm feeling well, overall, with no new side effects but several regular ones that are irritating, and an overlying feeling of being tired all the time. Matt and I will head to UCSF on September 14th, where I will have CT scans in the morning, and see the good doctor that same afternoon to go over the results as well as those of my blood test. I feel your prayers on a daily basis, and am thankful for those of you who have made me a permanent name on your prayer list. I will ask that those of you that know my husband's family will prayer for his mom and her two sisters as they face the loss of their sister, and for the families as well.
Walking in Hope,
Danene
August 25, 2009
Tuesday, August 4, 2009
In the Nick of Time
Hi Friends and Family,
My mom and I were at UCSF yesterday to see the good doctor for a check-in appointment. It was her first time to meet him, and he was in a fun mood. We were just consulting on the results of my latest blood test, which had no new surprises. My thryoid TSH level is even lower now (.01, with a normal range being .3-5), so we are pretty much playing a waiting game for it to fail outright. Apparently there is no rush on our part! The extreme of how my thyroid is acting would explain a few of my side effects, though. He took pretty extensive notes (with the help of another 'trainee') on all of the side effects I had this last time, and again they are all expected, just varying from time to time in the degree. I also took the CD of my last scans, which he hadn't seen yet. We looked at them together-very strange as it is like you are looking at yourself through the middle from head to toe lengthwise. It took awhile to get the perspective, but my mom and I finally figured it out, and saw the little specks in my lungs. The doctor was glad to see the scans for himself, as he thinks they don't look as badly as the report led him to believe. In fact, he thinks that the larger 'irregular opacity' might not even be a tumor, but an infection. The next scans in 6 weeks will be very interesting to compare. So...I start my 7th round of chemo (9 full months, now) on Thursday. I was also told, and expected to hear, that the year mark is not a magical number. It's a wait and see time as to what will come after that. God is good, as I was prepared to hear that.
My mom and I went to the Ferry Building after the appointment, as it was gorgeous, walking-around-in-shirtsleeves weather. In San Francisco, I can park free in most places with my handicapped placard, so we found a place on the street, checked that it was okay with the parking gal who rides around in the little cart giving out tickets, and left, not needing to buy a metered tag for the windshield. Well, after we ate and checked out the shops in the Ferry Building, we were strolling back towards the car with our Peet's, and I look ahead and saw that my car and all the others around it were surrounded my tow trucks! Now to get to the car, I had to cross a double-wide street with a train running through the middle of it. I made it to the last part, but the traffic light would not change, and only my car was left for them to tow...and they were loading it up! Finally, the cars passed, and even though the light hadn't changed, I went running. I told the officer in charge what the situation was, and he informed me that the magical hour of 3:00 had passed, and all cars were towed after that time...and that it was posted on the place where you buy your pass, and on street signs. Well, I shared (very respectfully) that I had checked with the meter gal, and that since I hadn't needed to buy one of those passes, I didn't know the magical time, and the sign nearby was hidden in the trees. I really hadn't seen it! He was very firm, but also very gracious. He told me I would get my car, and no ticket, but to be aware the next time. Folks, my car was already hooked to the truck and they were ready to drive away when I ran up. God is so good. Without even knowing, my mom and I were in the right place in the nick of time to avoid who knows what hassles that would have resulted. I have been thanking Him ever since. Isn't this proof that He cares for even the details in our lives?
Humbly,
Danene
August 4, 2009
My mom and I were at UCSF yesterday to see the good doctor for a check-in appointment. It was her first time to meet him, and he was in a fun mood. We were just consulting on the results of my latest blood test, which had no new surprises. My thryoid TSH level is even lower now (.01, with a normal range being .3-5), so we are pretty much playing a waiting game for it to fail outright. Apparently there is no rush on our part! The extreme of how my thyroid is acting would explain a few of my side effects, though. He took pretty extensive notes (with the help of another 'trainee') on all of the side effects I had this last time, and again they are all expected, just varying from time to time in the degree. I also took the CD of my last scans, which he hadn't seen yet. We looked at them together-very strange as it is like you are looking at yourself through the middle from head to toe lengthwise. It took awhile to get the perspective, but my mom and I finally figured it out, and saw the little specks in my lungs. The doctor was glad to see the scans for himself, as he thinks they don't look as badly as the report led him to believe. In fact, he thinks that the larger 'irregular opacity' might not even be a tumor, but an infection. The next scans in 6 weeks will be very interesting to compare. So...I start my 7th round of chemo (9 full months, now) on Thursday. I was also told, and expected to hear, that the year mark is not a magical number. It's a wait and see time as to what will come after that. God is good, as I was prepared to hear that.
My mom and I went to the Ferry Building after the appointment, as it was gorgeous, walking-around-in-shirtsleeves weather. In San Francisco, I can park free in most places with my handicapped placard, so we found a place on the street, checked that it was okay with the parking gal who rides around in the little cart giving out tickets, and left, not needing to buy a metered tag for the windshield. Well, after we ate and checked out the shops in the Ferry Building, we were strolling back towards the car with our Peet's, and I look ahead and saw that my car and all the others around it were surrounded my tow trucks! Now to get to the car, I had to cross a double-wide street with a train running through the middle of it. I made it to the last part, but the traffic light would not change, and only my car was left for them to tow...and they were loading it up! Finally, the cars passed, and even though the light hadn't changed, I went running. I told the officer in charge what the situation was, and he informed me that the magical hour of 3:00 had passed, and all cars were towed after that time...and that it was posted on the place where you buy your pass, and on street signs. Well, I shared (very respectfully) that I had checked with the meter gal, and that since I hadn't needed to buy one of those passes, I didn't know the magical time, and the sign nearby was hidden in the trees. I really hadn't seen it! He was very firm, but also very gracious. He told me I would get my car, and no ticket, but to be aware the next time. Folks, my car was already hooked to the truck and they were ready to drive away when I ran up. God is so good. Without even knowing, my mom and I were in the right place in the nick of time to avoid who knows what hassles that would have resulted. I have been thanking Him ever since. Isn't this proof that He cares for even the details in our lives?
Humbly,
Danene
August 4, 2009
Tuesday, July 21, 2009
WALKING Through the Valley
Hi, Friends,
Two more days and this round of chemo is over. Yahoo! It's been a long month. I was doing quite well (just normal, to-be-expected side effects) until last week when our family went camping and fishing at Mosquito Lake. It's such a beautiful setting just past Lake Alpine, at 8050 feet. About the third day into our trip, though, the altitude got to me, and I had a hard time getting enough air, zapping me of any energy as well. Fortunately, Matt's parents were with us and my mother-in-law had her inhaler with her. That helped get me through the next day and a half until we headed home. I have noticed that I am tired A LOT lately. Perhaps the answer is in the additional blood test I had during my last visit at UCSF. It showed that two additional markers of my thyroid came back within normal range, but that my thyroid stimulating hormone is still abnormally low, which suggests that my thyroid is failing, but my body is trying its hardest to compensate for that. This can continue for awhile, but eventually I will probably need to go on thyroid replacement therapy. I've been assured by family members who are on replacement therapy already, and by the doctors, that this is nothing to worry about. However, it will be just one more pill to add to my already almost-bursting pink pill case!
Not long ago I read a fun book called Sisterchicks in Wooden Shoes. In it, a gal gets a call from her doctor that she has had an abnormal mammogram and needs a biopsy. Before she does anything, she gets on a plane to go visit her penpal of 40 years, in Holland. While she is there, many hilarious things happen, but she also has some profound moments as she deals with what may come in her life. One of these moments she finds in the 23rd Psalm. As she is reading it, her friend notices that it says "Even though I WALK through the valley of the shadow of death." That's different from stopping in the valley or sitting down under the shadow of death and just giving up. We don't stop and get stuck in the dark places.
I took the first step into that valley when the doctor called and told me I had cancer. While I do have moments I fear evil, I know that God is with me. His rod and staff are there to comfort me. The shepherd's rod was used for discipline and the staff for rescue. So what represents His rod and staff in my life? Well, many of you are the tools of the Great Shepherd in my life, keeping me close to Him, and encouraging and admonishing me with verses and words of wisdom. Oh, there are so many times I feel so helpless as I go on this journey, but God is taking care of me so wonderfully in this valley. I wonder why that is such an unexpected discovery...
Thank you all, my rods and staffs, for your prayers, and being tools for the Father in my life.
Danene
July 21, 2009
Two more days and this round of chemo is over. Yahoo! It's been a long month. I was doing quite well (just normal, to-be-expected side effects) until last week when our family went camping and fishing at Mosquito Lake. It's such a beautiful setting just past Lake Alpine, at 8050 feet. About the third day into our trip, though, the altitude got to me, and I had a hard time getting enough air, zapping me of any energy as well. Fortunately, Matt's parents were with us and my mother-in-law had her inhaler with her. That helped get me through the next day and a half until we headed home. I have noticed that I am tired A LOT lately. Perhaps the answer is in the additional blood test I had during my last visit at UCSF. It showed that two additional markers of my thyroid came back within normal range, but that my thyroid stimulating hormone is still abnormally low, which suggests that my thyroid is failing, but my body is trying its hardest to compensate for that. This can continue for awhile, but eventually I will probably need to go on thyroid replacement therapy. I've been assured by family members who are on replacement therapy already, and by the doctors, that this is nothing to worry about. However, it will be just one more pill to add to my already almost-bursting pink pill case!
Not long ago I read a fun book called Sisterchicks in Wooden Shoes. In it, a gal gets a call from her doctor that she has had an abnormal mammogram and needs a biopsy. Before she does anything, she gets on a plane to go visit her penpal of 40 years, in Holland. While she is there, many hilarious things happen, but she also has some profound moments as she deals with what may come in her life. One of these moments she finds in the 23rd Psalm. As she is reading it, her friend notices that it says "Even though I WALK through the valley of the shadow of death." That's different from stopping in the valley or sitting down under the shadow of death and just giving up. We don't stop and get stuck in the dark places.
I took the first step into that valley when the doctor called and told me I had cancer. While I do have moments I fear evil, I know that God is with me. His rod and staff are there to comfort me. The shepherd's rod was used for discipline and the staff for rescue. So what represents His rod and staff in my life? Well, many of you are the tools of the Great Shepherd in my life, keeping me close to Him, and encouraging and admonishing me with verses and words of wisdom. Oh, there are so many times I feel so helpless as I go on this journey, but God is taking care of me so wonderfully in this valley. I wonder why that is such an unexpected discovery...
Thank you all, my rods and staffs, for your prayers, and being tools for the Father in my life.
Danene
July 21, 2009
Friday, June 26, 2009
My Portion
Dear Friends,
I have to tell you that through my experience with cancer there have been many times that I have been tempted to throw a pity party and invite fear, worry, and dread. It's hard to stay positive and dwell on all the good that happens in my life in the midst of the not-so-fun. I had that temptation after meeting with Dr. Ryan to go over the results of my blood test and scans. The good news is that I previously had four nodules in my lungs and now only two of those remain. The bad news is that the two that remain have doubled in size from mm to cm, and there are two new ones. There are also some new lymph nodes in my chest area that are suspicious at this point. My blood test shows that my thyroid stimulating hormone has gone from one extreme to the other in six weeks, from double-normal to almost non-existent. So I had another more specific blood test and may have to visit my endocrinologist again to see if anything needs to be done. In the meantime, I will battle by continuing the Sutent. I started my sixth round last night.
Let me tell you about a different party that I chose to throw instead of that pity party. I studied it while I was in a Beth Moore Bible study on the book of Esther. In a nutshell, in Esther, there was an irreversible edict that would allow the Jews to be annihilated. But through many God-circumstances that reversed their destiny, an additional edict was presented that would allow the Jews to defend themselves. On the day after the two days of attack and defense, the Jews rested and made it a day of feasting and celebration. This became an annual celebration of the time when the Jews got relief from their enemies and when their sorrow was turned into joy and their mourning into a day of celebration with feasting and joy and the giving of portions of food. This was the celebration of Purim. Psalm 16:5-6 says, "Lord, you have assigned me my portion and my cup. You have made my lot secure; the boundary lines for me have fallen in pleasant places; surely I have a delightful inheritance." Those three words-destiny, portion, lot-all come from the same Hebrew word. This is how they all fit together: "No matter what life-or Satan himself-hands us, the favor God has on His children causes the 'lot' to tumble out on the table in such a way that, instead of destruction, the child will discover that her portion turned into destiny one trusting step at a time. When all is said and done, she will see that the portion God assigned her was good. Right. Rich. Full of purpose."
So I recently threw a Purim party of my own to celebrate the portion God allotted me, with a time of joy and feasting, and the chance to share with a few of those those who have daily fought my battle with me. I wish you all could have been there. It's not easy to choose to celebrate when you really want to have a pity party...but oh, it's so worth it to remember the goodness of our God and the defeat of our enemy. I don't know what my physical future may hold, but I know what my spiritual one holds, and it is secured for me in heaven.
Please continue to pray, my friends, as I know you do regularly, and for which I give thanks. Pray that the Sutent will work at attacking those nodules, and that any other suspicious areas will become as normal. Pray for those times that I feel defeated because I seem to have so little control over my body due to all of the medications and their side effects. Pray for my family. It's hard to hear that the battle is still on instead of almost over. And pray that we all can find the reasons to celebrate the goodness of our God. He is so faithful.
To all of you who contributed to the American Cancer Society's Relay for Life on my behalf, I offer you my humble thanks. I surpassed my goal for this year and raised $300. I'm touched that you would do that for me, and for all of us that are together in this battle against cancer.
Danene
June 26, 2009
I have to tell you that through my experience with cancer there have been many times that I have been tempted to throw a pity party and invite fear, worry, and dread. It's hard to stay positive and dwell on all the good that happens in my life in the midst of the not-so-fun. I had that temptation after meeting with Dr. Ryan to go over the results of my blood test and scans. The good news is that I previously had four nodules in my lungs and now only two of those remain. The bad news is that the two that remain have doubled in size from mm to cm, and there are two new ones. There are also some new lymph nodes in my chest area that are suspicious at this point. My blood test shows that my thyroid stimulating hormone has gone from one extreme to the other in six weeks, from double-normal to almost non-existent. So I had another more specific blood test and may have to visit my endocrinologist again to see if anything needs to be done. In the meantime, I will battle by continuing the Sutent. I started my sixth round last night.
Let me tell you about a different party that I chose to throw instead of that pity party. I studied it while I was in a Beth Moore Bible study on the book of Esther. In a nutshell, in Esther, there was an irreversible edict that would allow the Jews to be annihilated. But through many God-circumstances that reversed their destiny, an additional edict was presented that would allow the Jews to defend themselves. On the day after the two days of attack and defense, the Jews rested and made it a day of feasting and celebration. This became an annual celebration of the time when the Jews got relief from their enemies and when their sorrow was turned into joy and their mourning into a day of celebration with feasting and joy and the giving of portions of food. This was the celebration of Purim. Psalm 16:5-6 says, "Lord, you have assigned me my portion and my cup. You have made my lot secure; the boundary lines for me have fallen in pleasant places; surely I have a delightful inheritance." Those three words-destiny, portion, lot-all come from the same Hebrew word. This is how they all fit together: "No matter what life-or Satan himself-hands us, the favor God has on His children causes the 'lot' to tumble out on the table in such a way that, instead of destruction, the child will discover that her portion turned into destiny one trusting step at a time. When all is said and done, she will see that the portion God assigned her was good. Right. Rich. Full of purpose."
So I recently threw a Purim party of my own to celebrate the portion God allotted me, with a time of joy and feasting, and the chance to share with a few of those those who have daily fought my battle with me. I wish you all could have been there. It's not easy to choose to celebrate when you really want to have a pity party...but oh, it's so worth it to remember the goodness of our God and the defeat of our enemy. I don't know what my physical future may hold, but I know what my spiritual one holds, and it is secured for me in heaven.
Please continue to pray, my friends, as I know you do regularly, and for which I give thanks. Pray that the Sutent will work at attacking those nodules, and that any other suspicious areas will become as normal. Pray for those times that I feel defeated because I seem to have so little control over my body due to all of the medications and their side effects. Pray for my family. It's hard to hear that the battle is still on instead of almost over. And pray that we all can find the reasons to celebrate the goodness of our God. He is so faithful.
To all of you who contributed to the American Cancer Society's Relay for Life on my behalf, I offer you my humble thanks. I surpassed my goal for this year and raised $300. I'm touched that you would do that for me, and for all of us that are together in this battle against cancer.
Danene
June 26, 2009
Friday, June 5, 2009
Walking for Life
Hi, Friends and Family,
What a full few days this has been. Last Friday my son graduated from 8th grade, having made honor roll 7 out of 8 times. What a proud mom! Hard to believe I am now the mom of a high schooler. Hmmm. Not sure I feel ready for that. The night before, my sister-in-law graduated from nursing school. Having seen all she went through to accomplish this, the tears rolled freely as she walked the aisle and was pinned by her family. What a proud sister! We've had the end of school for all of us, fittings for braces for one, a birthday for the hubby, met our grand-niece for the first time, and so on. Busy!
I am in the last week of this round of chemo. No new side effects, but still sore feet, fighting a cold, and fighting the feeling of being tired. I look forward to the end of this round, for obvious reasons, but also because this time I will have scans and will see the result of why I take the meds. I'll keep you posted on what the results are as they come (appointment at UCSF is June 22nd).
I want to remind you that this weekend is Relay for Life, the walk that raises money for the American Cancer Society, and invite you to come out and join in the festivities, see the luminarias, and donate toward the hope of a cure. If you would like to go to my personal page and learn more, donate to the hope of a cure, or purchase a luminaria in honor or memory of someone you know, you can do so by cutting and pasting this link into your address bar: http://main.acsevents.org/site/TR/RelayForLife/RFLFY09CA?px=10862144&pg=personal&fr_id=13653. It's really easy and well worth it. Please join our family and many others who have been touched by cancer by getting involved.
Love to you all,
Danene
June 5, 2009
What a full few days this has been. Last Friday my son graduated from 8th grade, having made honor roll 7 out of 8 times. What a proud mom! Hard to believe I am now the mom of a high schooler. Hmmm. Not sure I feel ready for that. The night before, my sister-in-law graduated from nursing school. Having seen all she went through to accomplish this, the tears rolled freely as she walked the aisle and was pinned by her family. What a proud sister! We've had the end of school for all of us, fittings for braces for one, a birthday for the hubby, met our grand-niece for the first time, and so on. Busy!
I am in the last week of this round of chemo. No new side effects, but still sore feet, fighting a cold, and fighting the feeling of being tired. I look forward to the end of this round, for obvious reasons, but also because this time I will have scans and will see the result of why I take the meds. I'll keep you posted on what the results are as they come (appointment at UCSF is June 22nd).
I want to remind you that this weekend is Relay for Life, the walk that raises money for the American Cancer Society, and invite you to come out and join in the festivities, see the luminarias, and donate toward the hope of a cure. If you would like to go to my personal page and learn more, donate to the hope of a cure, or purchase a luminaria in honor or memory of someone you know, you can do so by cutting and pasting this link into your address bar: http://main.acsevents.org/site/TR/RelayForLife/RFLFY09CA?px=10862144&pg=personal&fr_id=13653. It's really easy and well worth it. Please join our family and many others who have been touched by cancer by getting involved.
Love to you all,
Danene
June 5, 2009
Wednesday, May 13, 2009
Ding...Round 5 Begins
Hi Friends,
I visited UCSF on Monday to check in with my doctor there and to get blood test results after finishing another round of Sutent. When the medical assistant took my blood pressure, it was finally within normal range, and seems to have regulated some. I will still have to monitor it regularly. The not-so-pleasant side effects from being on the blood pressure medicine also seem to have regulated, which makes me a much more pleasant person to be around! Thank you for all of your prayers on that matter. I actually met with the nurse-practitioner, Tammy, who I had heard about but never met. She was very nice and had already discussed my case with Dr. Ryan. My blood test results were okay, although there are a few things we will have to keep any eye on. My potassium is low, so I will make sure I have foods high in potassium in my diet. My creatinine is high, which means that the blood that is filtered by my kidney has a slightly high level of waste still in it. I was assured that it is nothing to be alarmed about, especially when you only have one kidney doing the job of two, but something to keep an eye on. My thyroid level is also high, so we will wait one more round, and if it is still high the next time, I will have to add thryoid medicine to my list as well. I start the next round of chemo on Thursday night. After this round, in mid-June, I will have scans done to see if there is any change or progress, as well as having a MUGA scan of my heart done to assure that the chemo is not affecting the way my heart pumps, which can happen after being on Sutent long term. (I have been told that long term means several years, so this is just a for a baseline. The plan still remains that I will only be on until November, unless the unexpected occurs.)
For the last two years, Matt and the kids and I have participated in the American Cancer Society's Relay for Life by walking in support of those we know who have or have had cancer. Last year we walked for an hour as a family, then I went back and walked in the early morning, as the luminarias were just dwindling, and had a quiet time with the Lord as I prayed for those same people. Little did I know that cancer may have already invaded my own life.
This year, I have joined the team we walked with last year, and will participate in the Survivor's Lap, as well as walking laps with my family, and being there for the lighting of the luminarias. As a team member, I am also trying to raise money for the Cancer Society. If you would like to go to my personal page and learn more, donate to the hope of a cure, or purchase a luminaria in honor or memory of someone you know, you can do so by cutting and pasting this link into your address bar: http://main.acsevents.org/site/TR/RelayForLife/RFLFY09CA?px=10862144&pg=personal&fr_id=13653. From there, you follow the guidelines provided based on if you would like to donate online, download a form to mail in, purchase a luminaria, or just learn a little more.
Before I finish, I want to share with you a little excerpt from an incredible book I just finished, Same Kind of Different As Me, by Ron Hall and Denver Moore. If you can get your hands on this book, you will be blessed. In the book, Ron (who is white) asks Denver (who is colored, and not sure if he can trust Ron) if they can be friends, and this is Denver's response:
"I heard that when white folks go fishin they do somethin called 'catch and release.' I just can't figure it out. 'Cause when colored folks go fishin, we really proud of what we catch, and we take it and show it off to everybody that'll look. Then we eat what we catch...in other words we use it to sustain us. So it really bothers me that white folks would go to all that trouble to catch a fish, then when they done caught it, just throw it back in the water. So, Mr. Ron, it occurred to me: If you is fishin for a friend you just gon' catch and release, then I ain't got no desire to be your friend. But if you is lookin for a real friend, then I'll be one. Forever."
I want to thank all of you for sustaining me, for being the kind of friends and family that didn't just catch for awhile, then release, but are real...forever. You have blessed me beyond measure.
Danene
May 13, 2009
I visited UCSF on Monday to check in with my doctor there and to get blood test results after finishing another round of Sutent. When the medical assistant took my blood pressure, it was finally within normal range, and seems to have regulated some. I will still have to monitor it regularly. The not-so-pleasant side effects from being on the blood pressure medicine also seem to have regulated, which makes me a much more pleasant person to be around! Thank you for all of your prayers on that matter. I actually met with the nurse-practitioner, Tammy, who I had heard about but never met. She was very nice and had already discussed my case with Dr. Ryan. My blood test results were okay, although there are a few things we will have to keep any eye on. My potassium is low, so I will make sure I have foods high in potassium in my diet. My creatinine is high, which means that the blood that is filtered by my kidney has a slightly high level of waste still in it. I was assured that it is nothing to be alarmed about, especially when you only have one kidney doing the job of two, but something to keep an eye on. My thyroid level is also high, so we will wait one more round, and if it is still high the next time, I will have to add thryoid medicine to my list as well. I start the next round of chemo on Thursday night. After this round, in mid-June, I will have scans done to see if there is any change or progress, as well as having a MUGA scan of my heart done to assure that the chemo is not affecting the way my heart pumps, which can happen after being on Sutent long term. (I have been told that long term means several years, so this is just a for a baseline. The plan still remains that I will only be on until November, unless the unexpected occurs.)
For the last two years, Matt and the kids and I have participated in the American Cancer Society's Relay for Life by walking in support of those we know who have or have had cancer. Last year we walked for an hour as a family, then I went back and walked in the early morning, as the luminarias were just dwindling, and had a quiet time with the Lord as I prayed for those same people. Little did I know that cancer may have already invaded my own life.
This year, I have joined the team we walked with last year, and will participate in the Survivor's Lap, as well as walking laps with my family, and being there for the lighting of the luminarias. As a team member, I am also trying to raise money for the Cancer Society. If you would like to go to my personal page and learn more, donate to the hope of a cure, or purchase a luminaria in honor or memory of someone you know, you can do so by cutting and pasting this link into your address bar: http://main.acsevents.org/site/TR/RelayForLife/RFLFY09CA?px=10862144&pg=personal&fr_id=13653. From there, you follow the guidelines provided based on if you would like to donate online, download a form to mail in, purchase a luminaria, or just learn a little more.
Before I finish, I want to share with you a little excerpt from an incredible book I just finished, Same Kind of Different As Me, by Ron Hall and Denver Moore. If you can get your hands on this book, you will be blessed. In the book, Ron (who is white) asks Denver (who is colored, and not sure if he can trust Ron) if they can be friends, and this is Denver's response:
"I heard that when white folks go fishin they do somethin called 'catch and release.' I just can't figure it out. 'Cause when colored folks go fishin, we really proud of what we catch, and we take it and show it off to everybody that'll look. Then we eat what we catch...in other words we use it to sustain us. So it really bothers me that white folks would go to all that trouble to catch a fish, then when they done caught it, just throw it back in the water. So, Mr. Ron, it occurred to me: If you is fishin for a friend you just gon' catch and release, then I ain't got no desire to be your friend. But if you is lookin for a real friend, then I'll be one. Forever."
I want to thank all of you for sustaining me, for being the kind of friends and family that didn't just catch for awhile, then release, but are real...forever. You have blessed me beyond measure.
Danene
May 13, 2009
Monday, May 4, 2009
Misery is a Choice
Hi, Friends,
I found this past week that I may have met my match. Throughout this cancer journey, I have been able to handle the inflamed feet, the aching and tender hands, the gray, wiry hair (okay, so I'm frowning on that one), and so on, all of which have not lasted too long or haven't even shown up on this last round, which ended last Wednesday. But my newest foe are the side effects that go with the high blood pressure medicine I am on, and they may just take me down! Gas, cramps, bloating, diarrhea...if you only knew how humbling that is to share. It's been a long week and it has affected everything from family to work to daily plans and sleep. I'm in touch with the nurse at UCSF, and we are working together to find out how to stop all of this, which all ties in with the chemo and the steroids/lack of adrenal glands. I see Dr. Ryan, my oncologist, next Monday at 11:30, so hopefully we will find a solution at that time.
Sunday, our pastor shared some principles for living through tough times. What appropriate timing for me to hear those, as I was feeling a little sorry for myself. I was reminded of many wonderful verses that take us the way of the cross through those tough times. I was also reminded that 'trouble comes to all; misery, however, is a choice.' Wow. I'm not the only one living with troubles, and I definitely don't want to make the choice of taking those troubles to the misery level. A timely message for me!
I'll update you again after I meet with Dr. Ryan next week. Thank you all for your continued prayers.
Danene
May 4, 2009
I found this past week that I may have met my match. Throughout this cancer journey, I have been able to handle the inflamed feet, the aching and tender hands, the gray, wiry hair (okay, so I'm frowning on that one), and so on, all of which have not lasted too long or haven't even shown up on this last round, which ended last Wednesday. But my newest foe are the side effects that go with the high blood pressure medicine I am on, and they may just take me down! Gas, cramps, bloating, diarrhea...if you only knew how humbling that is to share. It's been a long week and it has affected everything from family to work to daily plans and sleep. I'm in touch with the nurse at UCSF, and we are working together to find out how to stop all of this, which all ties in with the chemo and the steroids/lack of adrenal glands. I see Dr. Ryan, my oncologist, next Monday at 11:30, so hopefully we will find a solution at that time.
Sunday, our pastor shared some principles for living through tough times. What appropriate timing for me to hear those, as I was feeling a little sorry for myself. I was reminded of many wonderful verses that take us the way of the cross through those tough times. I was also reminded that 'trouble comes to all; misery, however, is a choice.' Wow. I'm not the only one living with troubles, and I definitely don't want to make the choice of taking those troubles to the misery level. A timely message for me!
I'll update you again after I meet with Dr. Ryan next week. Thank you all for your continued prayers.
Danene
May 4, 2009
Sunday, April 26, 2009
Catchin' Up
Hello, Everyone,
I thought I would catch you up on what's been happening since I went back on the chemo. I actually only have four days left in this round, which seems to have passed rather quickly. That's good!
The last time I blogged, I had just finished working at the church Easter weekend, and my feet were having some fits over being stood on all day. Then I also heard from the endocrinologist that I would need to keep on the steroids. Since then, my hands have started to ache when I grasp things, and if I put pressure on any part of them, it will hurt for a few days, then get better. I have to watch any heat on them, as well, which is a great excuse to get out of washing the dishes!
As a part of being on the chemo and on the steroids, I have to check my blood pressure a couple of times a week. This past week I started to notice it rising steadily, until it reached what is considered a hypertension level. This isn't good for anyone, but my sister-in-law has assured me it is really not good for someone in my situation. So after checking it for consecutive days, then putting in a call to my nurse, I am now also on high blood pressure meds. It seems to be helping a little, but is still high. (We all laugh at my little pill container-no offense to anyone out there but there are daily morning and night parts to it, and we call it my 'old lady' pill sorter!)
Last weekend, I went to Sutter Creek for a ladies retreat with my church, and on the last day each of us wrote a verse of encouragement for someone else at the retreat. We all put our cards in a basket, then the basket was passed and we randomly drew one out. Before the basket got to me, I prayed that whatever card I drew out would in some way be exactly what I needed for that moment. I really wanted a word from the Lord. I had suffered with my feet burning all weekend, and it was getting to be a little depressing and annoying. Well, God heard! This is the verse on the card I drew from the basket: 'but those who hope in the Lord will renew their strength. they will soar on wings like eagles; they will run and not grow weary, they will walk and not faint.' (Isaiah 40:31) Since then, my feet just haven't hurt as much. In fact, overall I'm feeling pretty well. God hears our prayers, God speaks encouraging words through others and His Word, God cares. Don't you just love that about Him? I sure do.
Have a great week,
Danene
April 26, 2009
P.S. I just read this and thought it was fantastic: "God has never looked over the balcony of heaven and said,'Oops!'" Nothing is ever a surprise to Him.
I thought I would catch you up on what's been happening since I went back on the chemo. I actually only have four days left in this round, which seems to have passed rather quickly. That's good!
The last time I blogged, I had just finished working at the church Easter weekend, and my feet were having some fits over being stood on all day. Then I also heard from the endocrinologist that I would need to keep on the steroids. Since then, my hands have started to ache when I grasp things, and if I put pressure on any part of them, it will hurt for a few days, then get better. I have to watch any heat on them, as well, which is a great excuse to get out of washing the dishes!
As a part of being on the chemo and on the steroids, I have to check my blood pressure a couple of times a week. This past week I started to notice it rising steadily, until it reached what is considered a hypertension level. This isn't good for anyone, but my sister-in-law has assured me it is really not good for someone in my situation. So after checking it for consecutive days, then putting in a call to my nurse, I am now also on high blood pressure meds. It seems to be helping a little, but is still high. (We all laugh at my little pill container-no offense to anyone out there but there are daily morning and night parts to it, and we call it my 'old lady' pill sorter!)
Last weekend, I went to Sutter Creek for a ladies retreat with my church, and on the last day each of us wrote a verse of encouragement for someone else at the retreat. We all put our cards in a basket, then the basket was passed and we randomly drew one out. Before the basket got to me, I prayed that whatever card I drew out would in some way be exactly what I needed for that moment. I really wanted a word from the Lord. I had suffered with my feet burning all weekend, and it was getting to be a little depressing and annoying. Well, God heard! This is the verse on the card I drew from the basket: 'but those who hope in the Lord will renew their strength. they will soar on wings like eagles; they will run and not grow weary, they will walk and not faint.' (Isaiah 40:31) Since then, my feet just haven't hurt as much. In fact, overall I'm feeling pretty well. God hears our prayers, God speaks encouraging words through others and His Word, God cares. Don't you just love that about Him? I sure do.
Have a great week,
Danene
April 26, 2009
P.S. I just read this and thought it was fantastic: "God has never looked over the balcony of heaven and said,'Oops!'" Nothing is ever a surprise to Him.
Thursday, April 16, 2009
Steroid Dependent
Hi Friends,
Just a short blog to let you know that Dr. Rushakoff, the endrocrinologist who performed the cortisyn test on me on Monday, just called. He said that my cortisol (adrenal function level) was a 3. I asked what normal was, and he said anything over 18. So that pretty much sums up the fact that my adrenal gland is not functioning. He said there could be a few possibilities: it could have been damaged during the removal of my kidney, it could just plain not be functioning, or it could be that it has sustained so much trauma from surgeries and meds that it has shut down. We could pursue that possibility in the future by retaking the test and seeing if there is a different result. So in the meantime I remain on the steroids, which is really not a big deal, and order a really cool medic alert bracelet. Things could be much worse.
Since the last time I shared, my feet are doing much better. I just needed to get off of them for an extended period of time. I do have to watch my blood pressure a little more closely as it was pretty high when I visited Safeway to check it this time. Again, not a big deal as long as I monitor more often.
Thank you again for your continued prayers and encouraging words for me and my family. I'll share again soon.
Danene
April 16, 2009
Just a short blog to let you know that Dr. Rushakoff, the endrocrinologist who performed the cortisyn test on me on Monday, just called. He said that my cortisol (adrenal function level) was a 3. I asked what normal was, and he said anything over 18. So that pretty much sums up the fact that my adrenal gland is not functioning. He said there could be a few possibilities: it could have been damaged during the removal of my kidney, it could just plain not be functioning, or it could be that it has sustained so much trauma from surgeries and meds that it has shut down. We could pursue that possibility in the future by retaking the test and seeing if there is a different result. So in the meantime I remain on the steroids, which is really not a big deal, and order a really cool medic alert bracelet. Things could be much worse.
Since the last time I shared, my feet are doing much better. I just needed to get off of them for an extended period of time. I do have to watch my blood pressure a little more closely as it was pretty high when I visited Safeway to check it this time. Again, not a big deal as long as I monitor more often.
Thank you again for your continued prayers and encouraging words for me and my family. I'll share again soon.
Danene
April 16, 2009
Sunday, April 12, 2009
Instead of Me
Hi Friends,
Today I celebrated the resurrection of my Lord Jesus. What a wonderful day! I continue to be humbled that God so wants to have a relationship with me, with all of my flaws and imperfections and sins that deserve death, that He sent His Son to die instead of me. Not just for me, but instead of me, so He could offer me a way to be with Him eternally. My God is a God of grace.
Tomorrow my mom and I will head to UCSF to meet with Dr. Rushikoff, an endocrinologist, to find out if the adrenal gland I still have is working. Through an IV, he will stimulate my pituitary gland to see if my adrenal gland responds. If it does, I might be able to forego taking steroids everyday. I'll let you know what I find out.
I've been back on chemotherapy for about 10 days and overall all is well. I had the privilege of working at our church during the Easter weekend, helping with food for our services, and it was so rewarding. I am paying the price just a bit with my feet, as the pads on the balls of my feet have already started to thicken, and being on them for hours at a time set off the burning. But you know, it was well worth it.
I hope your Easter weekend was as rewarding as mine was. I spent time with Matt's family, and with my parents and my brother and his family, as well as talking with my oldest brother. My children and my husband were in the kitchen with me at the church, serving others. And people all over the world celebrated a risen King. Do you know Him? He wants to know you so badly that He made a way for anyone, even you, to have a relationship with Him. I can tell you, firsthand, that it is the best decision I ever made. If you want to know more, just ask me.
Because of Him,
Danene
April 12, 2009
Today I celebrated the resurrection of my Lord Jesus. What a wonderful day! I continue to be humbled that God so wants to have a relationship with me, with all of my flaws and imperfections and sins that deserve death, that He sent His Son to die instead of me. Not just for me, but instead of me, so He could offer me a way to be with Him eternally. My God is a God of grace.
Tomorrow my mom and I will head to UCSF to meet with Dr. Rushikoff, an endocrinologist, to find out if the adrenal gland I still have is working. Through an IV, he will stimulate my pituitary gland to see if my adrenal gland responds. If it does, I might be able to forego taking steroids everyday. I'll let you know what I find out.
I've been back on chemotherapy for about 10 days and overall all is well. I had the privilege of working at our church during the Easter weekend, helping with food for our services, and it was so rewarding. I am paying the price just a bit with my feet, as the pads on the balls of my feet have already started to thicken, and being on them for hours at a time set off the burning. But you know, it was well worth it.
I hope your Easter weekend was as rewarding as mine was. I spent time with Matt's family, and with my parents and my brother and his family, as well as talking with my oldest brother. My children and my husband were in the kitchen with me at the church, serving others. And people all over the world celebrated a risen King. Do you know Him? He wants to know you so badly that He made a way for anyone, even you, to have a relationship with Him. I can tell you, firsthand, that it is the best decision I ever made. If you want to know more, just ask me.
Because of Him,
Danene
April 12, 2009
Friday, April 3, 2009
Choose Hope
Hi All,
Today Matt and I attended the funeral of a godly friend who in a moment of despair chose to take his own life. As I journey through this thing called cancer, I am struck by how many people share the journey with me through phone calls, this blog, prayers, and so many other ways. I've chosen to make my struggles very public overall. When I heard the news of this friend, I was overwhelmed by the fact that I am probably surrounded by people in their own struggles, and am not at all aware of them. I don't mean that I don't care, but that many people, in the midst of their struggles, keep it to themselves, perhaps put on a good face, or don't feel free to share. And in those moments of despair that inevitably come with struggles, the despair wins, instead of hope. I urge you, whatever you might be going through with health, work, money, children, marriage, or even simply how to make things work day to day...choose hope. It is a daily choice for some of us, and Satan would like nothing less than to wear us down and take our eyes off of Jesus just long enough for despair to win. Choose hope, reach out and share hope, hang on to the truth that is Jesus.
On a much lighter note, I started the next round of chemo last night. Thank you for your thoughts and prayers as I continue on my journey in the hope of being a 5% survivor.
Fondly, Danene
April 4, 2009
Today Matt and I attended the funeral of a godly friend who in a moment of despair chose to take his own life. As I journey through this thing called cancer, I am struck by how many people share the journey with me through phone calls, this blog, prayers, and so many other ways. I've chosen to make my struggles very public overall. When I heard the news of this friend, I was overwhelmed by the fact that I am probably surrounded by people in their own struggles, and am not at all aware of them. I don't mean that I don't care, but that many people, in the midst of their struggles, keep it to themselves, perhaps put on a good face, or don't feel free to share. And in those moments of despair that inevitably come with struggles, the despair wins, instead of hope. I urge you, whatever you might be going through with health, work, money, children, marriage, or even simply how to make things work day to day...choose hope. It is a daily choice for some of us, and Satan would like nothing less than to wear us down and take our eyes off of Jesus just long enough for despair to win. Choose hope, reach out and share hope, hang on to the truth that is Jesus.
On a much lighter note, I started the next round of chemo last night. Thank you for your thoughts and prayers as I continue on my journey in the hope of being a 5% survivor.
Fondly, Danene
April 4, 2009
Saturday, March 28, 2009
Our Journey Moves Onward
Hello, Friends,
I feel like I need to start this blog just reminding you that we serve such a mighty and living God. He cares so much about each of you, and me, and Matt and I were reminded of that when we visited UCSF for a post-op appointment with my surgeon and oncologist.
Last Thursday, Matt and I traveled back to San Francisco, where I started with a blood test to check that my phospates and electrolytes were balanced after the surgery (we asked for the results at the appointment, then got side-tracked, so we're assuming they were within the normal range!)
Next we met with 'Max', or Dr. Meng, who was very pleased with the results of the surgery. He was able to get a good margin around the adrenal gland and the attached tumor (6.4 cm in all), and according to the surgical report (which is fascinating to read) had to take a very small portion of the liver as well. The tumor was extensively necrotic, which means that it was largely dead. That was the meds at work! He also took nineteen lymph nodes, one of which shows metastatic renal clear cell carcinoma, or kidney cancer. He asked if I felt at least 80% recovered from the surgery, and I said a hearty yes! This recovery has been so much easier, and I have to remind myself to take it easy. He also released me to go back to work at whatever date I want, so I will return on April 9th.
After that meeting, we waited for what seemed like forever, but gave us a chance to people watch, and then met with Dr. Ryan, my oncologist. (I just realized we got to skip the step where we meet with a 'fellow' first!) Dr. Ryan was also very pleased with the outcome of the surgery. He shared that I am in a unique position in that there are not a lot of cases out there where a person with kidney cancer can successfully have most of the cancer removed. Therefore, there are not a lot of cases for him to study in order to make recommendations of what is next. So he presented my case to a lot of his colleagues, and asked their opinions. Overall, the opinion is that I should go back on the chemotherapy for an extended amount of time...a year total. Matt's first question was 'a year from now or from when she first started?', and the answer (whew!) was a year from when I first started, so I am already a third of the way through! In the middle of this conversation, he asked me how I had done on the meds, and I shared that overall it was bearable, but that the hardest parts were my feet, the sore at the back of my throat, and the bottom of my first incision, which gets scabby and very sore. I shared with him that having been off of the meds for several weeks made me realize that I had forgotten just how good I could feel. He hesitated for a bit, then said that no, he would remain firm. (His hesitation was about having me stay off the meds for awhile, just to see what might happen.)
So, this Thursday I will resume the chemotherapy, 28 days on then 14 days off. The first week I am off, I will have a blood test, as the good doctor wants to follow how the meds affect my thryoid, and to keep track of my creatinin. I also have to check my blood pressure during the meds. Then the second week I am off the meds, I will travel back to see Dr. Ryan for a check-up. After every other round of meds, I will have CAT scans done to see how things are. The goal is that I keep this up until there is nothing else showing, including in my lungs, small as those nodules are, which will possibly be until November, or whenever it seems safe to be done.
I will have to be very careful this summer as the meds affect my skin when it is overheated, and of course that means that the sun could be very irritating. So Matt and I visited the gift shop at Mount Zion (USCF) and found a great, red hat for me to wear to the kids' ballgames, etc. I also have found a good, strong sunscreen.
One thing that Dr. Ryan shared that really put all of this in perspective for Matt and I, as I accepted what he said about going back on the meds but wasn't very excited, is that he wishes he could have such good news to give to more of his patients. Very few who have the same cancer I have can successfully have the main sources of their cancer removed. I have had almost all of mine. Of course we can never know what might still be lurking in my body, but what is showing itself is small. There is a 5% full recovery rate for the kind of cancer I have, which is not a very good percentage. However, someone has to be in that 5% for there to even be that percentage. I believe that I will be one of those someones. It is that belief, along with the hope I have in Jesus, and all of your prayers, that gets me through each day. As hard as it is sometimes, I will not give up. I believe that God is not done building my character, growing me up in Him, and allowing me the privilege of sharing what He has done in my life, so that others will want to know this God I speak of. Keep praying for me, my friends.
Lovingly, Danene
March 28, 2009
I feel like I need to start this blog just reminding you that we serve such a mighty and living God. He cares so much about each of you, and me, and Matt and I were reminded of that when we visited UCSF for a post-op appointment with my surgeon and oncologist.
Last Thursday, Matt and I traveled back to San Francisco, where I started with a blood test to check that my phospates and electrolytes were balanced after the surgery (we asked for the results at the appointment, then got side-tracked, so we're assuming they were within the normal range!)
Next we met with 'Max', or Dr. Meng, who was very pleased with the results of the surgery. He was able to get a good margin around the adrenal gland and the attached tumor (6.4 cm in all), and according to the surgical report (which is fascinating to read) had to take a very small portion of the liver as well. The tumor was extensively necrotic, which means that it was largely dead. That was the meds at work! He also took nineteen lymph nodes, one of which shows metastatic renal clear cell carcinoma, or kidney cancer. He asked if I felt at least 80% recovered from the surgery, and I said a hearty yes! This recovery has been so much easier, and I have to remind myself to take it easy. He also released me to go back to work at whatever date I want, so I will return on April 9th.
After that meeting, we waited for what seemed like forever, but gave us a chance to people watch, and then met with Dr. Ryan, my oncologist. (I just realized we got to skip the step where we meet with a 'fellow' first!) Dr. Ryan was also very pleased with the outcome of the surgery. He shared that I am in a unique position in that there are not a lot of cases out there where a person with kidney cancer can successfully have most of the cancer removed. Therefore, there are not a lot of cases for him to study in order to make recommendations of what is next. So he presented my case to a lot of his colleagues, and asked their opinions. Overall, the opinion is that I should go back on the chemotherapy for an extended amount of time...a year total. Matt's first question was 'a year from now or from when she first started?', and the answer (whew!) was a year from when I first started, so I am already a third of the way through! In the middle of this conversation, he asked me how I had done on the meds, and I shared that overall it was bearable, but that the hardest parts were my feet, the sore at the back of my throat, and the bottom of my first incision, which gets scabby and very sore. I shared with him that having been off of the meds for several weeks made me realize that I had forgotten just how good I could feel. He hesitated for a bit, then said that no, he would remain firm. (His hesitation was about having me stay off the meds for awhile, just to see what might happen.)
So, this Thursday I will resume the chemotherapy, 28 days on then 14 days off. The first week I am off, I will have a blood test, as the good doctor wants to follow how the meds affect my thryoid, and to keep track of my creatinin. I also have to check my blood pressure during the meds. Then the second week I am off the meds, I will travel back to see Dr. Ryan for a check-up. After every other round of meds, I will have CAT scans done to see how things are. The goal is that I keep this up until there is nothing else showing, including in my lungs, small as those nodules are, which will possibly be until November, or whenever it seems safe to be done.
I will have to be very careful this summer as the meds affect my skin when it is overheated, and of course that means that the sun could be very irritating. So Matt and I visited the gift shop at Mount Zion (USCF) and found a great, red hat for me to wear to the kids' ballgames, etc. I also have found a good, strong sunscreen.
One thing that Dr. Ryan shared that really put all of this in perspective for Matt and I, as I accepted what he said about going back on the meds but wasn't very excited, is that he wishes he could have such good news to give to more of his patients. Very few who have the same cancer I have can successfully have the main sources of their cancer removed. I have had almost all of mine. Of course we can never know what might still be lurking in my body, but what is showing itself is small. There is a 5% full recovery rate for the kind of cancer I have, which is not a very good percentage. However, someone has to be in that 5% for there to even be that percentage. I believe that I will be one of those someones. It is that belief, along with the hope I have in Jesus, and all of your prayers, that gets me through each day. As hard as it is sometimes, I will not give up. I believe that God is not done building my character, growing me up in Him, and allowing me the privilege of sharing what He has done in my life, so that others will want to know this God I speak of. Keep praying for me, my friends.
Lovingly, Danene
March 28, 2009
Thursday, March 19, 2009
Home Again!
Hello, again, Friends,
Matt and I arrived home from our journey in San Francisco on Wednesday afternoon, stopping first at Safeway for the many prescriptions and other vitamins that will be a part of my immediate future. We have been blessed to have a high school friend of Matt's, named Greg, who works there, and he helped us work through the list with all of the specific instructions, and has made himself personally available to us. Again, God is watching out for us.
My stay at UCSF, as Matt shared previously, was very successful. The surgery lasted longer than expected, but the surgeon, Max Meng, was able to do it all laparoscopically. I have four incisions, three just under my bra line, and one at my belly button. Perfectly placed to allow me to wear all of my garments comfortably! I remember being in recovery, and the kind nurses there repeatedly reminding me to breathe, as I seemed to keep slipping back out, and forgetting I needed to do that. My next memory is of being in my room, and Matt, my parents, and my brother, Gary, being with me. I know I felt sick a couple of times, but was spared that. I had a fair night's sleep, and the next morning I began to meet the many different people that would take care of me for the next day or so.
My surgeon was very pleased with the outcome of the surgery, saying that the tumor they removed with the adrenal gland was just a little larger than a golf ball. There was still some unsurety as to whether I still had my left adrenal gland, so Matt and I got on the phone and called Peter Garbeff who had performed my first surgery. He graciously called us back and read verbatim from his surgical notes. We now know that I do indeed still have it-he did not remove it with the kidney. Shortly before this, we met the clinical professor for endocrinology, who talked with us about adrenal replacement therapy. He outlined what would be necessary for me to survive without my adrenal glands and has agreed to personally take me on as a patient. (Since then we had our talk with Dr. Garbeff, so we know I still have one gland, but are not sure if it is fully functioning.) I immediately began to take hydrocortisone, and am continuing that at home, adding fludrocortisone in a couple of days-both are steroids I must take every day for the rest of my life, or I could die. That was putting it very plainly and bluntly. I will go back in a month and there is a test they can perform that stimulates my pituitary gland that will see if my adrenal gland responds; then they will know if it is functioning and can sustain me, rather than needing to be on the steroids.
I was allowed to stay in the hospital one additional night, as my electrolytes were off slightly, and I needed to take additional phosphorous (I hope I'm getting all of this correct-it's a lot to remember). They also took into account the fact that by the time they coordinated everything, we would be leaving the hospital at rush hour, so would have a good three hours in the car, which might prove to be very uncomfortable. The extra night was wonderful. I rested well, considering, and I had a wonderful night nurse, Deb, who followed on the heels of a great day nurse, Carlos. They both were patient and understanding, and I felt very well-cared for.
Since we've been home, I have felt very well. My incisions, overall, have bothered me minimally. I can shower without covering them, which is great. The pain I've felt comes from the displaced air they pump you with when you have laparoscopic surgery. It must eventually make its way from your body, so it heads upward, usually into the shoulders and neck. This is rather like having a horrible shoulder and neck ache for awhile, until those wonderful pain pills set in! I also seem to have the hiccups and burp easily, also releasing the air. In the meantime, I feel rather bloated and, well, big.
I have to tell you something else that I forgot in my last post before the surgery. I have been off of the chemo meds for three weeks now, and for the first time since I started them last November, my feet do not hurt. I can walk and not limp or compensate with walking on the sides of my feet or curling my toes. I walked across the marble today with just my socks on, and my feet did not hurt at all. This is an incredibly wonderful feeling, and well worth the rest from the meds!
We will return to UCSF in a couple of weeks to meet with Dr. Meng regarding the pathology of the tumor and the lymph nodes, and to find out from Dr. Ryan what will follow as far as chemo.
Thank you to all of you for your prayers, your good thoughts, and your encouraging words. I know many of you are going through your own journeys, and Matt and I have been praying for you as well. God is with us. Isn't that a wonderful thought? Whatever each of us is experiencing, He knows and meets us at that need, eager to love us and care for us, and fulfill the promises of His Word. You know, Jesus experienced much pain and suffering of His own when He was on this earth. Who better for us to turn to in our pain and suffering but the One who knows what we've been through, and took it all on Himself, conquering it's hold over us?
Love to you all, Danene
March 19, 2009
Matt and I arrived home from our journey in San Francisco on Wednesday afternoon, stopping first at Safeway for the many prescriptions and other vitamins that will be a part of my immediate future. We have been blessed to have a high school friend of Matt's, named Greg, who works there, and he helped us work through the list with all of the specific instructions, and has made himself personally available to us. Again, God is watching out for us.
My stay at UCSF, as Matt shared previously, was very successful. The surgery lasted longer than expected, but the surgeon, Max Meng, was able to do it all laparoscopically. I have four incisions, three just under my bra line, and one at my belly button. Perfectly placed to allow me to wear all of my garments comfortably! I remember being in recovery, and the kind nurses there repeatedly reminding me to breathe, as I seemed to keep slipping back out, and forgetting I needed to do that. My next memory is of being in my room, and Matt, my parents, and my brother, Gary, being with me. I know I felt sick a couple of times, but was spared that. I had a fair night's sleep, and the next morning I began to meet the many different people that would take care of me for the next day or so.
My surgeon was very pleased with the outcome of the surgery, saying that the tumor they removed with the adrenal gland was just a little larger than a golf ball. There was still some unsurety as to whether I still had my left adrenal gland, so Matt and I got on the phone and called Peter Garbeff who had performed my first surgery. He graciously called us back and read verbatim from his surgical notes. We now know that I do indeed still have it-he did not remove it with the kidney. Shortly before this, we met the clinical professor for endocrinology, who talked with us about adrenal replacement therapy. He outlined what would be necessary for me to survive without my adrenal glands and has agreed to personally take me on as a patient. (Since then we had our talk with Dr. Garbeff, so we know I still have one gland, but are not sure if it is fully functioning.) I immediately began to take hydrocortisone, and am continuing that at home, adding fludrocortisone in a couple of days-both are steroids I must take every day for the rest of my life, or I could die. That was putting it very plainly and bluntly. I will go back in a month and there is a test they can perform that stimulates my pituitary gland that will see if my adrenal gland responds; then they will know if it is functioning and can sustain me, rather than needing to be on the steroids.
I was allowed to stay in the hospital one additional night, as my electrolytes were off slightly, and I needed to take additional phosphorous (I hope I'm getting all of this correct-it's a lot to remember). They also took into account the fact that by the time they coordinated everything, we would be leaving the hospital at rush hour, so would have a good three hours in the car, which might prove to be very uncomfortable. The extra night was wonderful. I rested well, considering, and I had a wonderful night nurse, Deb, who followed on the heels of a great day nurse, Carlos. They both were patient and understanding, and I felt very well-cared for.
Since we've been home, I have felt very well. My incisions, overall, have bothered me minimally. I can shower without covering them, which is great. The pain I've felt comes from the displaced air they pump you with when you have laparoscopic surgery. It must eventually make its way from your body, so it heads upward, usually into the shoulders and neck. This is rather like having a horrible shoulder and neck ache for awhile, until those wonderful pain pills set in! I also seem to have the hiccups and burp easily, also releasing the air. In the meantime, I feel rather bloated and, well, big.
I have to tell you something else that I forgot in my last post before the surgery. I have been off of the chemo meds for three weeks now, and for the first time since I started them last November, my feet do not hurt. I can walk and not limp or compensate with walking on the sides of my feet or curling my toes. I walked across the marble today with just my socks on, and my feet did not hurt at all. This is an incredibly wonderful feeling, and well worth the rest from the meds!
We will return to UCSF in a couple of weeks to meet with Dr. Meng regarding the pathology of the tumor and the lymph nodes, and to find out from Dr. Ryan what will follow as far as chemo.
Thank you to all of you for your prayers, your good thoughts, and your encouraging words. I know many of you are going through your own journeys, and Matt and I have been praying for you as well. God is with us. Isn't that a wonderful thought? Whatever each of us is experiencing, He knows and meets us at that need, eager to love us and care for us, and fulfill the promises of His Word. You know, Jesus experienced much pain and suffering of His own when He was on this earth. Who better for us to turn to in our pain and suffering but the One who knows what we've been through, and took it all on Himself, conquering it's hold over us?
Love to you all, Danene
March 19, 2009
Monday, March 16, 2009
Recovery
Hey all,
The surgery went better than expected according to the surgeon that performed the surgery. It took a little more that three hours to perform. It was all completed laparoscopicly so the recovery time will be cut down, and it looks like we will be able to be home tomorrow. They took the right adrenal gland, mass and a number of limp nodes. It will take about a week to get the pathology back on that they took. The Anesthesiologist who worked with Danene gave Velma and I the thumbs up just a little bit ago.
I got to see Danene as they took her from the operating room to the recovery room. I should get to see her around 1:00-1:30 in her room. Thanks for all of the prayer that has been lifted up on our behalf and keep it going. Our God is great and he will see us through this time in our lives. Keep the good thoughts going and you will be hearing form the two of use soon.
Danene’s husband Matt. 12:02 3/16/09
The surgery went better than expected according to the surgeon that performed the surgery. It took a little more that three hours to perform. It was all completed laparoscopicly so the recovery time will be cut down, and it looks like we will be able to be home tomorrow. They took the right adrenal gland, mass and a number of limp nodes. It will take about a week to get the pathology back on that they took. The Anesthesiologist who worked with Danene gave Velma and I the thumbs up just a little bit ago.
I got to see Danene as they took her from the operating room to the recovery room. I should get to see her around 1:00-1:30 in her room. Thanks for all of the prayer that has been lifted up on our behalf and keep it going. Our God is great and he will see us through this time in our lives. Keep the good thoughts going and you will be hearing form the two of use soon.
Danene’s husband Matt. 12:02 3/16/09
Saturday, March 14, 2009
Jesus is Enough!
Hi Friends and Family,
Matt and I leave tomorrow for UCSF. My surgery is Monday morning at 7:30. Please pray for my surgeon, for the anesthesiologist, and for my nurses. Also please pray for Matt. my children who will be with Matt's parents, and my family.
I just want to share one thought before I leave you for now-something that has been playing through my mind as I face this surgery and plan for it (unlike the last one that just kind of came on quickly). I fully believe in the power of my God, and I know that He has planned my days from the time I was in my mother's womb. Having cancer has not changed that, it just makes the days a little more interesting. However, I want you all to know that should those days come to an end more quickly than any of us would like, my Jesus is enough. He has given me everything I need for this life. Whether I am healed or not, whether I have a long life or not, He is enough. He will be enough for my family, should they have to face a future with me or without me. He definitely loves them even more than I do-He gave His life for them. And He is enough for you, too.
So while I will gladly accept all of your prayers, and while I believe all will go well on Monday morning, just know that through it all, my Jesus is enough.
Fondly, Danene
March 14, 2009
Matt and I leave tomorrow for UCSF. My surgery is Monday morning at 7:30. Please pray for my surgeon, for the anesthesiologist, and for my nurses. Also please pray for Matt. my children who will be with Matt's parents, and my family.
I just want to share one thought before I leave you for now-something that has been playing through my mind as I face this surgery and plan for it (unlike the last one that just kind of came on quickly). I fully believe in the power of my God, and I know that He has planned my days from the time I was in my mother's womb. Having cancer has not changed that, it just makes the days a little more interesting. However, I want you all to know that should those days come to an end more quickly than any of us would like, my Jesus is enough. He has given me everything I need for this life. Whether I am healed or not, whether I have a long life or not, He is enough. He will be enough for my family, should they have to face a future with me or without me. He definitely loves them even more than I do-He gave His life for them. And He is enough for you, too.
So while I will gladly accept all of your prayers, and while I believe all will go well on Monday morning, just know that through it all, my Jesus is enough.
Fondly, Danene
March 14, 2009
Tuesday, February 24, 2009
Thus Far
Hello, Friends!
I am two nights away from finishing this third round of chemo, and only through God's grace and your prayers have I made it thus far. The side effects set in on day two of the meds, and pretty much have not let up since then. I have avoided the hard spots on the bottoms of my feet by curling my toes or walking on the outsides of my feet, and now those places have hard callouses, too. My hands are very sensitive to heat, and remain sore most of the time. I have a sore throat, I think because the meds tend to dry me out, but no sores in my mouth. The bottom of my scar still is not healing because of the meds, so is sensitive as it is right at my waist and rubs on my waistband. And then there is the silver in my hair and my eyebrows. Well, that will take some time to get used to! But I will say that through all of this, I am reminded that God has brought me thus far.
I keep referring to 'thus far' as this is a main focus in the Bible study I am a part of on Tuesday mornings. We are studying the life of David in II Samuel. David was living in a beautiful palace, while the Ark of the Covenant was housed in a tent, and this really bothered David. He wanted to build a beautiful house for the Ark, but God said that instead He would establish a house for David. David's response was, "Who am I, O Sovereign Lord, and what is my family, that you have brought me thus far?"
I often think, 'Who am I, Lord, that you want me? That you love me and my family?' I want to become a person only God could make. I want to not just feel better but feel free; not just released but relieved; not just adjusted but transformed. I want God to accomplish something 'so far' that people will look at me and my family and say, "It had to be God!" So I guess that means that I do not focus on the cancer and the chemo and its side effects, but on the cross. If I don't keep my focus there, then it would be too easy for the enemy to talk me into believing that God is not good and does not have my best interests in mind.
So, my friends, please continue to pray for me. Pray for a work in my life, no matter what it involves or what the end result is, that will cause others to question how far God has brought me. Then pray I will have the boldness to share with them His saving grace.
Matt and I will go to San Francisco on March 15th, and on March 16th I will have laparoscopic surgery to remove my right adrenal gland and a small, attached mass. We will only be there one night, if all goes well. We welcome your prayers for the doctors, for me, for my family, and for a chance to share with others how God has already brought me 'thus far'.
Danene - February 24, 2009
I am two nights away from finishing this third round of chemo, and only through God's grace and your prayers have I made it thus far. The side effects set in on day two of the meds, and pretty much have not let up since then. I have avoided the hard spots on the bottoms of my feet by curling my toes or walking on the outsides of my feet, and now those places have hard callouses, too. My hands are very sensitive to heat, and remain sore most of the time. I have a sore throat, I think because the meds tend to dry me out, but no sores in my mouth. The bottom of my scar still is not healing because of the meds, so is sensitive as it is right at my waist and rubs on my waistband. And then there is the silver in my hair and my eyebrows. Well, that will take some time to get used to! But I will say that through all of this, I am reminded that God has brought me thus far.
I keep referring to 'thus far' as this is a main focus in the Bible study I am a part of on Tuesday mornings. We are studying the life of David in II Samuel. David was living in a beautiful palace, while the Ark of the Covenant was housed in a tent, and this really bothered David. He wanted to build a beautiful house for the Ark, but God said that instead He would establish a house for David. David's response was, "Who am I, O Sovereign Lord, and what is my family, that you have brought me thus far?"
I often think, 'Who am I, Lord, that you want me? That you love me and my family?' I want to become a person only God could make. I want to not just feel better but feel free; not just released but relieved; not just adjusted but transformed. I want God to accomplish something 'so far' that people will look at me and my family and say, "It had to be God!" So I guess that means that I do not focus on the cancer and the chemo and its side effects, but on the cross. If I don't keep my focus there, then it would be too easy for the enemy to talk me into believing that God is not good and does not have my best interests in mind.
So, my friends, please continue to pray for me. Pray for a work in my life, no matter what it involves or what the end result is, that will cause others to question how far God has brought me. Then pray I will have the boldness to share with them His saving grace.
Matt and I will go to San Francisco on March 15th, and on March 16th I will have laparoscopic surgery to remove my right adrenal gland and a small, attached mass. We will only be there one night, if all goes well. We welcome your prayers for the doctors, for me, for my family, and for a chance to share with others how God has already brought me 'thus far'.
Danene - February 24, 2009
Friday, January 23, 2009
UCSF's Results
Dear Friends and Family,
First of all, let me tell you how good it feels to know that I have so many friends and family to refer to, and to know how many of you care and pray for me. I am thankful.
Matt and I were up at 4:45am on Thursday to begin our trip to UCSF. (In the future we will take the advice of some good friends and will spend the night before over there so we don't have to get up quite so early.) We arrived a little early, and the staff at the lab was gracious and took me early for my scans. After a little breakfast in the hospital cafe, and a little people watching in the lobby, we headed for our appointments with the doctor and surgeon, only to sit and wait for quite awhile. We finally got into a room, and once again met with a 'fellow', this time named Adam. (I took special note as I felt badly that I couldn't remember the name of the last 'fellow'.) After he met with the doctor, they both joined Matt and me and we had a chance to actually see my scans from the morning, which fortunately they understood because even with his explanations, I could only pick out certain things. I did get to see what the mass looks like and where it is in my body-all quite strange! He had only received the radiologist's report on my chest scan, so we will not know the details on the abdominal and pelvic reports until Monday, when I can call and get copies sent.
So here is the news:
First of all, there are no new areas of cancer that could be seen, saving the possibility of one lymph node somewhere in the vicinity of my lower/middle chest. It appears to be slightly enlarged and suspicious, but without the radiologist's report they are hesitant to say much. The mass on my right adrenal gland is still the same size but is dying from the inside out, much like an apple that looks normal on the outside but it rotten at the core. The four spots on my lungs are still there, but two of them are smaller by as much as half. So all of this means that the medication is working. This is good.
While the mass is dying, I would need to stay on the medication indefinitely until either the mass went away completely, or my body could no longer tolerate the medication. This would not be good. When the surgeon joined us, he agreed that it would be for my best that we remove the mass. As we were talking about this, he was doing the timing in his head that I would need to be off the meds for two weeks prior, and I've already been off one...and I realized that he was thinking this could happen in another week's time! Well, needless to say, I had a moment of panic before I could find my voice and respectfully request that we wait until after Matt's outages at work and until my parents return from their yearly trip to Hawaii. So, here is the plan we came up with. I will go on the medication for one more round of 28 days, then following the 14 days off, I will have surgery (on Monday, March 16th at 7:30am) to remove the mass and my right adrenal gland. (There was a little confusion as to whether I still have my other adrenal gland. Matt and I thought it was removed with the kidney and tumor, but the pathology report does not specifically mention it, so they will be calling 'Peter' (Garbeff) to check, as with the removal of the second adrenal gland, I will need to immediately go on steriods for adrenal gland replacement therapy, something I will need to take everyday for the rest of my life.) The surgeon felt that, barring something showing up on the radiologist's report that is unexpected, he should be able to remove the gland and the mass laprosopically with four small holes. Wow! While he is in there, he will also try to get a look at that suspicious lymph gland, and should it need removal, he would make a small incision straight down from my current scar and remove it and any others he deems necessary. So overall, my recovery with this surgery should be shorter and a little easier, making it possible for me to return to work before the end of the year.
After the surgery, I would need to go back on the medication for two more rounds, then have the scans again, and should the results show no more growths or suspicious areas, I would be able to try going off of the meds, which is our ultimate goal. I'm not looking forward to further experiences with the Sutent as it was harder on my body this past round, and will cumulatively get that way with each successive round. Dr. Ryan did ask how I was doing and what the side effects were that I experienced, and then was able to give me some information that will help me in the future, as well as his nurse's number, as the nurse, Jay, knows all about Sutent and its side effects, and has many helps that he can offer me. In Dr. Ryan's words, I should call instead of 'suffering at home alone.' Some of the things sound funky, but make a lot of sense. For instance, one of the side effects is Hand and Foot Disease, which I had, that begins with your hands and bottoms of feet turning red and painful, preceding peeling and blistering. Heat hurts the hands, and it becomes painful to grasp things, and the feet feel hot and painful to walk on. According to the good doctor, what is happening is that the medication is sweating out through the hands and feet. So one suggestion that has worked for many is to put deoderant on the bottoms of the feet! Jay also has some 'cocktail' concoction that should help the tightness and dryness in my throat that made swallowing so painful towards the end. All of the side effects, and many ways to try to combat them, were on a handout that he gave me, which I wish I would have had before as it basically listed every single one of them I have experienced. No more guessing if things are just me or are side effects. And yes, changing of hair color is one of them, as is evidenced by the increasing white at my roots. So is bloating, which I just experienced this week when my hands and face became swollen, and those new jeans I so enjoyed buying in that new smaller size suddenly were a little too tight. (Okay, so that was a little personal, but is the way it is!)
Right now, I have been off of the meds for a week, and my tongue just quit its burning, so my family will enjoy my cooking with spice and texture for the next week before I start the next cycle. I am slowly feeling better in other ways, like less pain when I walk, and bending over without the pulling from the bottom of my scar (which is attacked each time because the meds attack the newest cells, and my scar had not completely healed at the bottom before I started the first round of Sutent, so it gets scabby and very sore each time I am on the meds. Argh!) I am enjoying my class at school, and getting back into the routine of teaching and being with the kids. It was hard to share with them this morning that I will be going back on the medication, then having another surgery, then on the meds again. They were hoping that the cancer would be gone, and that we would have reason for a party. I assured them that although the time is not yet here, there will be a time we will throw a pary, and they will certainly be invited!
A friend of mine named Ashley shared with me something that I go back to frequently. Often cancer is referred to as the 'big C'. Well, my friends, it can only be a 'little c' to those of us who walk with Christ, as He is our 'Big C'. That certainly puts this journey in perspective. I want to stand on the promises that the Big C brings to my life, rather than letting the little c take over.
Thank you for all of your prayers, hugs, phone calls, and caring words for me and for my family. I am blessed by each of you and cherish the fact that there are so many of you. Please continue.
Danene
January 23, 2009
First of all, let me tell you how good it feels to know that I have so many friends and family to refer to, and to know how many of you care and pray for me. I am thankful.
Matt and I were up at 4:45am on Thursday to begin our trip to UCSF. (In the future we will take the advice of some good friends and will spend the night before over there so we don't have to get up quite so early.) We arrived a little early, and the staff at the lab was gracious and took me early for my scans. After a little breakfast in the hospital cafe, and a little people watching in the lobby, we headed for our appointments with the doctor and surgeon, only to sit and wait for quite awhile. We finally got into a room, and once again met with a 'fellow', this time named Adam. (I took special note as I felt badly that I couldn't remember the name of the last 'fellow'.) After he met with the doctor, they both joined Matt and me and we had a chance to actually see my scans from the morning, which fortunately they understood because even with his explanations, I could only pick out certain things. I did get to see what the mass looks like and where it is in my body-all quite strange! He had only received the radiologist's report on my chest scan, so we will not know the details on the abdominal and pelvic reports until Monday, when I can call and get copies sent.
So here is the news:
First of all, there are no new areas of cancer that could be seen, saving the possibility of one lymph node somewhere in the vicinity of my lower/middle chest. It appears to be slightly enlarged and suspicious, but without the radiologist's report they are hesitant to say much. The mass on my right adrenal gland is still the same size but is dying from the inside out, much like an apple that looks normal on the outside but it rotten at the core. The four spots on my lungs are still there, but two of them are smaller by as much as half. So all of this means that the medication is working. This is good.
While the mass is dying, I would need to stay on the medication indefinitely until either the mass went away completely, or my body could no longer tolerate the medication. This would not be good. When the surgeon joined us, he agreed that it would be for my best that we remove the mass. As we were talking about this, he was doing the timing in his head that I would need to be off the meds for two weeks prior, and I've already been off one...and I realized that he was thinking this could happen in another week's time! Well, needless to say, I had a moment of panic before I could find my voice and respectfully request that we wait until after Matt's outages at work and until my parents return from their yearly trip to Hawaii. So, here is the plan we came up with. I will go on the medication for one more round of 28 days, then following the 14 days off, I will have surgery (on Monday, March 16th at 7:30am) to remove the mass and my right adrenal gland. (There was a little confusion as to whether I still have my other adrenal gland. Matt and I thought it was removed with the kidney and tumor, but the pathology report does not specifically mention it, so they will be calling 'Peter' (Garbeff) to check, as with the removal of the second adrenal gland, I will need to immediately go on steriods for adrenal gland replacement therapy, something I will need to take everyday for the rest of my life.) The surgeon felt that, barring something showing up on the radiologist's report that is unexpected, he should be able to remove the gland and the mass laprosopically with four small holes. Wow! While he is in there, he will also try to get a look at that suspicious lymph gland, and should it need removal, he would make a small incision straight down from my current scar and remove it and any others he deems necessary. So overall, my recovery with this surgery should be shorter and a little easier, making it possible for me to return to work before the end of the year.
After the surgery, I would need to go back on the medication for two more rounds, then have the scans again, and should the results show no more growths or suspicious areas, I would be able to try going off of the meds, which is our ultimate goal. I'm not looking forward to further experiences with the Sutent as it was harder on my body this past round, and will cumulatively get that way with each successive round. Dr. Ryan did ask how I was doing and what the side effects were that I experienced, and then was able to give me some information that will help me in the future, as well as his nurse's number, as the nurse, Jay, knows all about Sutent and its side effects, and has many helps that he can offer me. In Dr. Ryan's words, I should call instead of 'suffering at home alone.' Some of the things sound funky, but make a lot of sense. For instance, one of the side effects is Hand and Foot Disease, which I had, that begins with your hands and bottoms of feet turning red and painful, preceding peeling and blistering. Heat hurts the hands, and it becomes painful to grasp things, and the feet feel hot and painful to walk on. According to the good doctor, what is happening is that the medication is sweating out through the hands and feet. So one suggestion that has worked for many is to put deoderant on the bottoms of the feet! Jay also has some 'cocktail' concoction that should help the tightness and dryness in my throat that made swallowing so painful towards the end. All of the side effects, and many ways to try to combat them, were on a handout that he gave me, which I wish I would have had before as it basically listed every single one of them I have experienced. No more guessing if things are just me or are side effects. And yes, changing of hair color is one of them, as is evidenced by the increasing white at my roots. So is bloating, which I just experienced this week when my hands and face became swollen, and those new jeans I so enjoyed buying in that new smaller size suddenly were a little too tight. (Okay, so that was a little personal, but is the way it is!)
Right now, I have been off of the meds for a week, and my tongue just quit its burning, so my family will enjoy my cooking with spice and texture for the next week before I start the next cycle. I am slowly feeling better in other ways, like less pain when I walk, and bending over without the pulling from the bottom of my scar (which is attacked each time because the meds attack the newest cells, and my scar had not completely healed at the bottom before I started the first round of Sutent, so it gets scabby and very sore each time I am on the meds. Argh!) I am enjoying my class at school, and getting back into the routine of teaching and being with the kids. It was hard to share with them this morning that I will be going back on the medication, then having another surgery, then on the meds again. They were hoping that the cancer would be gone, and that we would have reason for a party. I assured them that although the time is not yet here, there will be a time we will throw a pary, and they will certainly be invited!
A friend of mine named Ashley shared with me something that I go back to frequently. Often cancer is referred to as the 'big C'. Well, my friends, it can only be a 'little c' to those of us who walk with Christ, as He is our 'Big C'. That certainly puts this journey in perspective. I want to stand on the promises that the Big C brings to my life, rather than letting the little c take over.
Thank you for all of your prayers, hugs, phone calls, and caring words for me and for my family. I am blessed by each of you and cherish the fact that there are so many of you. Please continue.
Danene
January 23, 2009
Wednesday, January 7, 2009
Back to Work
Hi, Friends,
This past Monday saw me back at work as a teacher in my second grade classroom. The kids greeted me with big hugs and warm hearts. My job-share partner and my long-term sub have done a wonderful job with this class, as they showed me through their behavior and learning throughout the day.
It was hard to go back in the sense that I would love to be a stay-at-home mom, but everything went well and I was able to step right back in and pick up most of what I needed to do. There are some things that are new to this year that will take me awhile to adjust to and learn.
I felt good at the end of the day, and actually didn't feel the effects of a full day on my feet until it was time to climb the stairs to our bedroom. Then the spots on my feet felt swollen and burning, and my throat was tight and hot. These are both side effects of the medication that I have felt before and expected. So far, in addition to those side effects, I just started getting the burning on my tongue that keeps me from eating citrus and spicy or acidic foods. I also found out, when I got my hair cut yesterday, that my hair is growing out white from the roots. So...this is not necessarily an effect I want to happen! (Although I'll take that over losing my hair.)
I have eight days left on this second round of medication. Then, on January 22nd, Matt and I will return to UCSF, where I will have chest, abdominal, and pelvic CAT scans, then later that morning meet with the urologic oncologist for the results of the scans as well as those from the presentation to the Tumor Board, then a surgeon to get his opinion on whether or not he thinks the mass still on my right side should be removed. Overall, we are anxious to have these meetings to know if the medication has worked, and what the immediate future will look like for me.
I've had so many people comment on my attitude throughout this whole experience. I want to share with you something that I read in my devotional book, Praying Through Cancer, that so perfectly put into words how I feel. Susan Eggerich (from Love & Respect Ministries) said, "I I knew it was God's will that I give thanks in all things, but this didn't feel like something for which to be thankful. That's when I learned about a sacrifice of praise. Each time I offered a sacrifice of praise, I knew I was honoring God, even though my circumstances did not always change. This isn't about feelings but about obedience." This is my goal, to have my feelings catch up with my obedience, so that my heart truly honors God, even when I don't know how all of this will end up. Once again, it's all about trust.
Thanks for your continued prayers, Danene
January 7, 2009
This past Monday saw me back at work as a teacher in my second grade classroom. The kids greeted me with big hugs and warm hearts. My job-share partner and my long-term sub have done a wonderful job with this class, as they showed me through their behavior and learning throughout the day.
It was hard to go back in the sense that I would love to be a stay-at-home mom, but everything went well and I was able to step right back in and pick up most of what I needed to do. There are some things that are new to this year that will take me awhile to adjust to and learn.
I felt good at the end of the day, and actually didn't feel the effects of a full day on my feet until it was time to climb the stairs to our bedroom. Then the spots on my feet felt swollen and burning, and my throat was tight and hot. These are both side effects of the medication that I have felt before and expected. So far, in addition to those side effects, I just started getting the burning on my tongue that keeps me from eating citrus and spicy or acidic foods. I also found out, when I got my hair cut yesterday, that my hair is growing out white from the roots. So...this is not necessarily an effect I want to happen! (Although I'll take that over losing my hair.)
I have eight days left on this second round of medication. Then, on January 22nd, Matt and I will return to UCSF, where I will have chest, abdominal, and pelvic CAT scans, then later that morning meet with the urologic oncologist for the results of the scans as well as those from the presentation to the Tumor Board, then a surgeon to get his opinion on whether or not he thinks the mass still on my right side should be removed. Overall, we are anxious to have these meetings to know if the medication has worked, and what the immediate future will look like for me.
I've had so many people comment on my attitude throughout this whole experience. I want to share with you something that I read in my devotional book, Praying Through Cancer, that so perfectly put into words how I feel. Susan Eggerich (from Love & Respect Ministries) said, "I I knew it was God's will that I give thanks in all things, but this didn't feel like something for which to be thankful. That's when I learned about a sacrifice of praise. Each time I offered a sacrifice of praise, I knew I was honoring God, even though my circumstances did not always change. This isn't about feelings but about obedience." This is my goal, to have my feelings catch up with my obedience, so that my heart truly honors God, even when I don't know how all of this will end up. Once again, it's all about trust.
Thanks for your continued prayers, Danene
January 7, 2009
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