Dear Friends and Family,
It’s been quite awhile since I last blogged, as I look back on the last entry. Since then, Matt and I have been to UCSF to meet with Dr. Ryan and to go over blood tests and the results of my scans. The scans showed that the meds are working to contain the cancer as there was no additional growth on any of the nodules in my lungs, and the soft mass in my lower abdomen is showing signs of being necrotic (dying). This is wonderful news!
The day after we got back from that appointment, I had the day off of work, and found myself unable to breathe deeply if I moved around at all. I spent most of the day in the recliner, and finally called Matt, who suggested I call the cardiologist. They immediately suggested I go to the ER, so my good friend Kimberley dropped everything and drove me there where Matt eventually met us. My pulmonary pressure is twice what it should be, which is a large cause of my breathlessness. They did another echocardiogram and gave me a deep breathing treatment. I was admitted to the hospital and met with a pulmonary specialist, who gave me a bronchioscopy the Thursday morning, which meant he went in through my nose into my lungs, cleaned out the gook, and took several biopsies of the spider-webby areas at the base of my lung lobes. He thought this went very well with little bleeding. I am having deep breathing treatments every 6 hours, which are really helping my ability to breathe more deeply and to control my breathing without panting as much. The next morning the specialist stopped by and he had called the lab for a preliminary path report and the biopsies showed NO CANCER! They are just a form of broncialitis or an inflammation of the lungs. So they are treating it with large doses of steroids that they are already gradually tapering off. The side effects of the steroids affect my blood sugar, so I have it checked four times a day, and have a small dose of insulin each time depending on the level of the sugar. (I think of you often, Kent.) I’m still here at Lodi Memorial, and will probably be here for a few more days until they get things stabilized a little more and have a better plan of attack for when I go home. The steroids will need to continue for up to three months, as well as breathing treatments and oxygen, so there will still be a long road to travel when I finally get home, with lots of unknowns for now. I have taken a week by week leave from school for now, until I know the long term of what I am up against. Each day is a little different, some going very well, and some filled with fear and anxiety. I am learning to turn to the Bible, to cry out to Jesus, and to lose myself in worship music on my iPod during those moments. God has delivered me many a time from the brink of despair. I find myself missing my children, who are not allowed to visit me. My sister-in-law, in her infinite wisdom and deeply caring heart, bought journals for the kids and me so we can write letters back and forth to each other. This has turned out to be a fun and creative way to stay in touch and be as real as possible with each other.
I realize I have rambled a lot with this blog, but this is where I am for now in this journey with cancer. It has taken some turns that were unexpected, but I am getting the help I need. And in the midst of it all is some good news that the cancer is somewhat under control. We are surrounded by caring and helpful family and friends that have completely overwhelmed us with their help and desire to step in and do anything at all. We have had people pick up and deliver kids, bring meals, clean house, drop off baked goods, and just call with words of encouragement and wisdom. And we are thankful. We are thankful for all of your prayers, and ask that they continue. Pray in whatever way the Lord lays on your heart. We will keep you updated as we can and as we know more.
Danene and Matt and Kids
Tuesday, January 12, 2010
Friday, December 25, 2009
It Started in a Manger
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
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
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).
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