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
Saturday, March 28, 2009
Thursday, March 19, 2009
Home Again!
Hello, again, Friends,
Matt and I arrived home from our journey in San Francisco on Wednesday afternoon, stopping first at Safeway for the many prescriptions and other vitamins that will be a part of my immediate future. We have been blessed to have a high school friend of Matt's, named Greg, who works there, and he helped us work through the list with all of the specific instructions, and has made himself personally available to us. Again, God is watching out for us.
My stay at UCSF, as Matt shared previously, was very successful. The surgery lasted longer than expected, but the surgeon, Max Meng, was able to do it all laparoscopically. I have four incisions, three just under my bra line, and one at my belly button. Perfectly placed to allow me to wear all of my garments comfortably! I remember being in recovery, and the kind nurses there repeatedly reminding me to breathe, as I seemed to keep slipping back out, and forgetting I needed to do that. My next memory is of being in my room, and Matt, my parents, and my brother, Gary, being with me. I know I felt sick a couple of times, but was spared that. I had a fair night's sleep, and the next morning I began to meet the many different people that would take care of me for the next day or so.
My surgeon was very pleased with the outcome of the surgery, saying that the tumor they removed with the adrenal gland was just a little larger than a golf ball. There was still some unsurety as to whether I still had my left adrenal gland, so Matt and I got on the phone and called Peter Garbeff who had performed my first surgery. He graciously called us back and read verbatim from his surgical notes. We now know that I do indeed still have it-he did not remove it with the kidney. Shortly before this, we met the clinical professor for endocrinology, who talked with us about adrenal replacement therapy. He outlined what would be necessary for me to survive without my adrenal glands and has agreed to personally take me on as a patient. (Since then we had our talk with Dr. Garbeff, so we know I still have one gland, but are not sure if it is fully functioning.) I immediately began to take hydrocortisone, and am continuing that at home, adding fludrocortisone in a couple of days-both are steroids I must take every day for the rest of my life, or I could die. That was putting it very plainly and bluntly. I will go back in a month and there is a test they can perform that stimulates my pituitary gland that will see if my adrenal gland responds; then they will know if it is functioning and can sustain me, rather than needing to be on the steroids.
I was allowed to stay in the hospital one additional night, as my electrolytes were off slightly, and I needed to take additional phosphorous (I hope I'm getting all of this correct-it's a lot to remember). They also took into account the fact that by the time they coordinated everything, we would be leaving the hospital at rush hour, so would have a good three hours in the car, which might prove to be very uncomfortable. The extra night was wonderful. I rested well, considering, and I had a wonderful night nurse, Deb, who followed on the heels of a great day nurse, Carlos. They both were patient and understanding, and I felt very well-cared for.
Since we've been home, I have felt very well. My incisions, overall, have bothered me minimally. I can shower without covering them, which is great. The pain I've felt comes from the displaced air they pump you with when you have laparoscopic surgery. It must eventually make its way from your body, so it heads upward, usually into the shoulders and neck. This is rather like having a horrible shoulder and neck ache for awhile, until those wonderful pain pills set in! I also seem to have the hiccups and burp easily, also releasing the air. In the meantime, I feel rather bloated and, well, big.
I have to tell you something else that I forgot in my last post before the surgery. I have been off of the chemo meds for three weeks now, and for the first time since I started them last November, my feet do not hurt. I can walk and not limp or compensate with walking on the sides of my feet or curling my toes. I walked across the marble today with just my socks on, and my feet did not hurt at all. This is an incredibly wonderful feeling, and well worth the rest from the meds!
We will return to UCSF in a couple of weeks to meet with Dr. Meng regarding the pathology of the tumor and the lymph nodes, and to find out from Dr. Ryan what will follow as far as chemo.
Thank you to all of you for your prayers, your good thoughts, and your encouraging words. I know many of you are going through your own journeys, and Matt and I have been praying for you as well. God is with us. Isn't that a wonderful thought? Whatever each of us is experiencing, He knows and meets us at that need, eager to love us and care for us, and fulfill the promises of His Word. You know, Jesus experienced much pain and suffering of His own when He was on this earth. Who better for us to turn to in our pain and suffering but the One who knows what we've been through, and took it all on Himself, conquering it's hold over us?
Love to you all, Danene
March 19, 2009
Matt and I arrived home from our journey in San Francisco on Wednesday afternoon, stopping first at Safeway for the many prescriptions and other vitamins that will be a part of my immediate future. We have been blessed to have a high school friend of Matt's, named Greg, who works there, and he helped us work through the list with all of the specific instructions, and has made himself personally available to us. Again, God is watching out for us.
My stay at UCSF, as Matt shared previously, was very successful. The surgery lasted longer than expected, but the surgeon, Max Meng, was able to do it all laparoscopically. I have four incisions, three just under my bra line, and one at my belly button. Perfectly placed to allow me to wear all of my garments comfortably! I remember being in recovery, and the kind nurses there repeatedly reminding me to breathe, as I seemed to keep slipping back out, and forgetting I needed to do that. My next memory is of being in my room, and Matt, my parents, and my brother, Gary, being with me. I know I felt sick a couple of times, but was spared that. I had a fair night's sleep, and the next morning I began to meet the many different people that would take care of me for the next day or so.
My surgeon was very pleased with the outcome of the surgery, saying that the tumor they removed with the adrenal gland was just a little larger than a golf ball. There was still some unsurety as to whether I still had my left adrenal gland, so Matt and I got on the phone and called Peter Garbeff who had performed my first surgery. He graciously called us back and read verbatim from his surgical notes. We now know that I do indeed still have it-he did not remove it with the kidney. Shortly before this, we met the clinical professor for endocrinology, who talked with us about adrenal replacement therapy. He outlined what would be necessary for me to survive without my adrenal glands and has agreed to personally take me on as a patient. (Since then we had our talk with Dr. Garbeff, so we know I still have one gland, but are not sure if it is fully functioning.) I immediately began to take hydrocortisone, and am continuing that at home, adding fludrocortisone in a couple of days-both are steroids I must take every day for the rest of my life, or I could die. That was putting it very plainly and bluntly. I will go back in a month and there is a test they can perform that stimulates my pituitary gland that will see if my adrenal gland responds; then they will know if it is functioning and can sustain me, rather than needing to be on the steroids.
I was allowed to stay in the hospital one additional night, as my electrolytes were off slightly, and I needed to take additional phosphorous (I hope I'm getting all of this correct-it's a lot to remember). They also took into account the fact that by the time they coordinated everything, we would be leaving the hospital at rush hour, so would have a good three hours in the car, which might prove to be very uncomfortable. The extra night was wonderful. I rested well, considering, and I had a wonderful night nurse, Deb, who followed on the heels of a great day nurse, Carlos. They both were patient and understanding, and I felt very well-cared for.
Since we've been home, I have felt very well. My incisions, overall, have bothered me minimally. I can shower without covering them, which is great. The pain I've felt comes from the displaced air they pump you with when you have laparoscopic surgery. It must eventually make its way from your body, so it heads upward, usually into the shoulders and neck. This is rather like having a horrible shoulder and neck ache for awhile, until those wonderful pain pills set in! I also seem to have the hiccups and burp easily, also releasing the air. In the meantime, I feel rather bloated and, well, big.
I have to tell you something else that I forgot in my last post before the surgery. I have been off of the chemo meds for three weeks now, and for the first time since I started them last November, my feet do not hurt. I can walk and not limp or compensate with walking on the sides of my feet or curling my toes. I walked across the marble today with just my socks on, and my feet did not hurt at all. This is an incredibly wonderful feeling, and well worth the rest from the meds!
We will return to UCSF in a couple of weeks to meet with Dr. Meng regarding the pathology of the tumor and the lymph nodes, and to find out from Dr. Ryan what will follow as far as chemo.
Thank you to all of you for your prayers, your good thoughts, and your encouraging words. I know many of you are going through your own journeys, and Matt and I have been praying for you as well. God is with us. Isn't that a wonderful thought? Whatever each of us is experiencing, He knows and meets us at that need, eager to love us and care for us, and fulfill the promises of His Word. You know, Jesus experienced much pain and suffering of His own when He was on this earth. Who better for us to turn to in our pain and suffering but the One who knows what we've been through, and took it all on Himself, conquering it's hold over us?
Love to you all, Danene
March 19, 2009
Monday, March 16, 2009
Recovery
Hey all,
The surgery went better than expected according to the surgeon that performed the surgery. It took a little more that three hours to perform. It was all completed laparoscopicly so the recovery time will be cut down, and it looks like we will be able to be home tomorrow. They took the right adrenal gland, mass and a number of limp nodes. It will take about a week to get the pathology back on that they took. The Anesthesiologist who worked with Danene gave Velma and I the thumbs up just a little bit ago.
I got to see Danene as they took her from the operating room to the recovery room. I should get to see her around 1:00-1:30 in her room. Thanks for all of the prayer that has been lifted up on our behalf and keep it going. Our God is great and he will see us through this time in our lives. Keep the good thoughts going and you will be hearing form the two of use soon.
Danene’s husband Matt. 12:02 3/16/09
The surgery went better than expected according to the surgeon that performed the surgery. It took a little more that three hours to perform. It was all completed laparoscopicly so the recovery time will be cut down, and it looks like we will be able to be home tomorrow. They took the right adrenal gland, mass and a number of limp nodes. It will take about a week to get the pathology back on that they took. The Anesthesiologist who worked with Danene gave Velma and I the thumbs up just a little bit ago.
I got to see Danene as they took her from the operating room to the recovery room. I should get to see her around 1:00-1:30 in her room. Thanks for all of the prayer that has been lifted up on our behalf and keep it going. Our God is great and he will see us through this time in our lives. Keep the good thoughts going and you will be hearing form the two of use soon.
Danene’s husband Matt. 12:02 3/16/09
Saturday, March 14, 2009
Jesus is Enough!
Hi Friends and Family,
Matt and I leave tomorrow for UCSF. My surgery is Monday morning at 7:30. Please pray for my surgeon, for the anesthesiologist, and for my nurses. Also please pray for Matt. my children who will be with Matt's parents, and my family.
I just want to share one thought before I leave you for now-something that has been playing through my mind as I face this surgery and plan for it (unlike the last one that just kind of came on quickly). I fully believe in the power of my God, and I know that He has planned my days from the time I was in my mother's womb. Having cancer has not changed that, it just makes the days a little more interesting. However, I want you all to know that should those days come to an end more quickly than any of us would like, my Jesus is enough. He has given me everything I need for this life. Whether I am healed or not, whether I have a long life or not, He is enough. He will be enough for my family, should they have to face a future with me or without me. He definitely loves them even more than I do-He gave His life for them. And He is enough for you, too.
So while I will gladly accept all of your prayers, and while I believe all will go well on Monday morning, just know that through it all, my Jesus is enough.
Fondly, Danene
March 14, 2009
Matt and I leave tomorrow for UCSF. My surgery is Monday morning at 7:30. Please pray for my surgeon, for the anesthesiologist, and for my nurses. Also please pray for Matt. my children who will be with Matt's parents, and my family.
I just want to share one thought before I leave you for now-something that has been playing through my mind as I face this surgery and plan for it (unlike the last one that just kind of came on quickly). I fully believe in the power of my God, and I know that He has planned my days from the time I was in my mother's womb. Having cancer has not changed that, it just makes the days a little more interesting. However, I want you all to know that should those days come to an end more quickly than any of us would like, my Jesus is enough. He has given me everything I need for this life. Whether I am healed or not, whether I have a long life or not, He is enough. He will be enough for my family, should they have to face a future with me or without me. He definitely loves them even more than I do-He gave His life for them. And He is enough for you, too.
So while I will gladly accept all of your prayers, and while I believe all will go well on Monday morning, just know that through it all, my Jesus is enough.
Fondly, Danene
March 14, 2009
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