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
Wednesday, 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
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