So Scott woke up with a tender lump on his throat. With great anxiety we visited our family physician who said, "So, you have a lump? Oh.... that's going to need a biopsy."
I just cannot express the overwhelming sob that just sits on my chest right now.
At best, it is a cyst that will need to be drained. Considering how fast it came on it is most likely something like that. At worst, well......... Either way this is definitely unpleasant and possibly something with a lot of mortal finality attached.
I was just feeling a little picked on, as if the gates of hell are wide open and sucking us in, when the Lord rebuked me with these thoughts.....
"What did you expect? Did you really think this was supposed to be fun?"
No...but it would be nice to have a little break, maybe some peace and quiet.
"No. What kind of peace is there to be found if there is no conflict?"
What? There is supposed to be peace in this?
"Peace and lack of conflict are two different things."
Ok. So that hit me hard. The general message, I think, was "Find peace.", but I definitely feel a "I've blessed you so much. I can't believe you have the nerve to whine."
Breathe, stop, drop, roll. Repeat.
Remember, the man has been promised that he will enjoy his grandchildren. I am going to have to hold to that. Previously, I clung to that pretty good, but the overall situations were never this intense, not even close. This is really trying my faith and I am grasping for that assurance that everything will work out.
I really have been comforted in the past. My prayers really are answered. They are always answered. I don't see any alternative but to take my testimony of "God lives and is in charge" and hold my heart to it. My heart must find peace in that or chuck the whole "God loves me" bit. There's no middle ground.
I will probably be struck down for even seriously contemplating it otherwise, but I do believe that God lives, loves me and is in control of this situation. I am insane to complain. We've been blessed with so many big and little miracles.
I'm sure this blog is babble to anyone who reads it, but it has been therapeutic for me. I seriously doubt anyone is reading this. Maybe, Scott is reading this just to see what is in my brain. I love you, Scott. You're everything to me. Everything.
Thursday, June 28, 2007
Sunday, June 24, 2007
An Epiphany
Scott's chemo/radiation treatment has been postponed for at least a week. The regional transplant board meets Friday. Scott's transplant must be approved before he starts the treatment.
I am grateful for a week to recover from last week. The kids will be glad for a week home doing lots and lots of jobs for me. They will work harder than they ever have before. They will be so glad when we leave again. I am teasing them because they are here watching me type. I love them so much and want them to be happy. I know this has been extremely hard for them to understand and adjust. I am grateful for their strong spirits and happy attitudes and willingness to help out in every way they can! I want them to know that even though this is hard it is only for a little while. Six months is not a long time and will go by quickly. In a year we will be amazed that we lived thru all this. N. says that I should write, "N. doesn't want you to leave. I want you to stay. I'm going to miss you." M. says, "The sooner you go the better:) I love you so much. I miss you already."
I was thinking at how much more intense this experience is than I had originally expected and how fortunate it is that we have been given a massive support system at the University of Utah. It suddenly struck me that there must be a really good reason for such an unusually large and well established support system. If this was going to be a lollipop, jolly experience there wouldn't be 5 highly specialized physicians, 3+ nurse coordinators, and numerous residents tediously coordinating their schedules to meticulously educate and prepare us for the things that are coming. If the intensity of the preparation is any indication of how hard this whole experience is going to be we are in for one heck of a ride. My stomach has a rock at the bottom as I realize that we have seen absolutely nothing yet and we are already being stretched to the limit.
I am grateful for a week to recover from last week. The kids will be glad for a week home doing lots and lots of jobs for me. They will work harder than they ever have before. They will be so glad when we leave again. I am teasing them because they are here watching me type. I love them so much and want them to be happy. I know this has been extremely hard for them to understand and adjust. I am grateful for their strong spirits and happy attitudes and willingness to help out in every way they can! I want them to know that even though this is hard it is only for a little while. Six months is not a long time and will go by quickly. In a year we will be amazed that we lived thru all this. N. says that I should write, "N. doesn't want you to leave. I want you to stay. I'm going to miss you." M. says, "The sooner you go the better:) I love you so much. I miss you already."
I was thinking at how much more intense this experience is than I had originally expected and how fortunate it is that we have been given a massive support system at the University of Utah. It suddenly struck me that there must be a really good reason for such an unusually large and well established support system. If this was going to be a lollipop, jolly experience there wouldn't be 5 highly specialized physicians, 3+ nurse coordinators, and numerous residents tediously coordinating their schedules to meticulously educate and prepare us for the things that are coming. If the intensity of the preparation is any indication of how hard this whole experience is going to be we are in for one heck of a ride. My stomach has a rock at the bottom as I realize that we have seen absolutely nothing yet and we are already being stretched to the limit.
Friday, June 22, 2007
when God takes the wheel
My main mantra for crisis control for the moment is Stop, Drop and Roll. Stop Flailing. Drop to your knees. Roll your energy into only the most effective efforts. Anything I try to write more than that is so sickening sweet I feel nauseated when I read it. I'm sure you can figure it out.
We returned to Utah on Wednesday morning, June 20th for a 1pm meeting with our oncologist. We were both exhausted and sleep deprived from the weeks' events. Scott, who had been outright heavily medicated and hallucinating(he prefers I say heavily medicated as opposed stoned :) since Friday, was not in any shape to drive. I was not in any shape to drive, really, but had no choice. So, I tried to stop thinking how tired I was and prayed and prayed while I drove. Scott, for the first time since Friday, had a good nap. We stopped at the Inkom rest area and stretched. The last real conscious memory I have is rounding that lava rock corner before the long stretch of road to Malad. I dimly remember passing the Flaggs West truck stop. The next moment I found myself descending out of the hills approaching Tremonton. I was jolted awake by the realization that I was sleep driving and had been for about 75 miles. I am not sure exactly what happened, but I think God took the wheel so I could have a nap. For anyone reading this, please, do not try this at home or anywhere for that matter. I would prefer to never try it again. I am grateful that God heard my prayers and that we were safely delivered to our destination.
That is so typical of our lives right now. Stress. Insufficient efforts. Prayer. Loss of control. Deliverance. It just keeps repeating over and over. I'm not complaining. I am just amazed that God would bother so much with us. He seems to be putting in overtime just to keep us alive. It wouldh've been so easy for the Dr to miss Scott's cancer for another year, perhaps, before untreatable symptoms presented. Just so many little situations, if they were just even a little different it would not be possible for Scott to be treated for this previously untreatable cancer. Just one little second off the road and we could be done with this life. I feel vulnerable. It makes me feel like there must be some specific reason we are still here. It makes me want to find what the Lord's will is for me and do it quickly so we can get it over with. I don't have a death wish. I just want to accomplish what I have been sent to do.
One thing is clear: Even with God at the wheel it is a pretty bumpy ride.
We returned to Utah on Wednesday morning, June 20th for a 1pm meeting with our oncologist. We were both exhausted and sleep deprived from the weeks' events. Scott, who had been outright heavily medicated and hallucinating(he prefers I say heavily medicated as opposed stoned :) since Friday, was not in any shape to drive. I was not in any shape to drive, really, but had no choice. So, I tried to stop thinking how tired I was and prayed and prayed while I drove. Scott, for the first time since Friday, had a good nap. We stopped at the Inkom rest area and stretched. The last real conscious memory I have is rounding that lava rock corner before the long stretch of road to Malad. I dimly remember passing the Flaggs West truck stop. The next moment I found myself descending out of the hills approaching Tremonton. I was jolted awake by the realization that I was sleep driving and had been for about 75 miles. I am not sure exactly what happened, but I think God took the wheel so I could have a nap. For anyone reading this, please, do not try this at home or anywhere for that matter. I would prefer to never try it again. I am grateful that God heard my prayers and that we were safely delivered to our destination.
That is so typical of our lives right now. Stress. Insufficient efforts. Prayer. Loss of control. Deliverance. It just keeps repeating over and over. I'm not complaining. I am just amazed that God would bother so much with us. He seems to be putting in overtime just to keep us alive. It wouldh've been so easy for the Dr to miss Scott's cancer for another year, perhaps, before untreatable symptoms presented. Just so many little situations, if they were just even a little different it would not be possible for Scott to be treated for this previously untreatable cancer. Just one little second off the road and we could be done with this life. I feel vulnerable. It makes me feel like there must be some specific reason we are still here. It makes me want to find what the Lord's will is for me and do it quickly so we can get it over with. I don't have a death wish. I just want to accomplish what I have been sent to do.
One thing is clear: Even with God at the wheel it is a pretty bumpy ride.
Tuesday, June 19, 2007
Thank You
I am so very grateful to everyone who has helped us this last little while. Thank You to the Relief Society for cooking and freezing some 30+ meals. Thank you to all the friends and family who have taken such great care of our children. Thanks to all the Utah family and friends for feeding us and giving us a place to stay.
A special thanks to Dr Schwartz and team who spent hundreds of hours adopting the cholangiocarcinoma treatment plan to the University of Utah from the Mayo Clinic and fighting to change the MELD score criteria in our region. We literally owe Scott's life to them.
A special thanks to Dr Schwartz and team who spent hundreds of hours adopting the cholangiocarcinoma treatment plan to the University of Utah from the Mayo Clinic and fighting to change the MELD score criteria in our region. We literally owe Scott's life to them.
Sunday, June 17, 2007
nothing pleasant
Scott had a biliary drain put in on Wednesday the 13th. It wasn't very fun. Scott stayed overnight and was discharged Thursday morning very sore. Friday morning he woke with severe pain, nausea and fever. We hurried back to the Huntsman Cancer Clinic where he was scheduled for a simms at the radiation oncology unit. They medicated him and were able to make a mold of his back so he will be in the same position each time they do radiation. His pain and fever increased. Knowing something was really wrong they transferred him to the University of Utah Hospital. The interventional radiologist who put in the drain took him back into the procedure and found that the tube had worked out of the liver and had coiled between his liver and abdominal wall. Bile was leaking out into his abdomin and he had a bad liver infection. Any one of those things would be extremely painful. The Dr replaced the tube with a bigger one that hopefully is stiff enough that it won't coil. Scott was admitted to the packed hospital, given IV antibiotics and lots of medication to control pain and nausea. I am so grateful that Scott was mostly unconscious for the majority of the day. I wouldn't have minded a little medication myself. Scott was discharged Saturday morning so very tender. Scott spent Saturday evening with uncontrolled pain and nausea but he was able to eventually settle down and slept fairly well. Today, he is taking pain/nausea medication just as soon as he can and is surviving.
Next week we meet the oncologist at the Huntsman. There are several other dr appointments and a trial run for the radiation treatment. Radiation/chemotherapy start on the 25th and lasts for 5 weeks.
Sometimes, I think that the only thing that matters is that you survive and are able to move forward.
Next week we meet the oncologist at the Huntsman. There are several other dr appointments and a trial run for the radiation treatment. Radiation/chemotherapy start on the 25th and lasts for 5 weeks.
Sometimes, I think that the only thing that matters is that you survive and are able to move forward.
Sunday, June 3, 2007
In The Beginning
This blog is for all of my wonderful family and friends who I love very much, who want to know what is going on and want to know how to help. For starters, Thank You for all of your support and especially your prayers.
Here it goes.
Scott has had a liver disease, primary sclerosing cholangitis, for about 13 years. We knew that he was high risk for cholangiocarcinoma, bile duct cancer, because they have checked for it every spring when they clean out his liver with an ERCP(endoscopic something something something).
Well, this April when they did the ERCP everything looked great. We went home thinking it was the easiest and most carefree procedure Scott had had. In May, our hepatologist's office called to let us know that some of the brushing results(biopsy of sorts) had come back abnormal and wanted us to come in to discuss them. (Note to reader: It is never good news when a dr calls you out of the blue to discuss lab results) So, we went in and were informed that the one brushing that was taken came back positive for cancer cells. There is no sign of cancer in Scott's bloodwork, CT scan or to the naked eye. It is the absolutely the earliest stage of cholangiocarcinoma. It is a miracle that they found it so early. From what I can gather it seems about as likely for the dr to walk on water as it is for him to find cholangiocarcinoma at stage 0.
Cholangiocarcinoma is an extremely deadly cancer. There are usually no signs or symptoms until it is too late to treat. It silently forms in the bile duct and produces tumors that spread agressively and are resistant to treatment. 90% of all persons diagnosed with this cancer qualify only for palliative treatment meaning they can sometimes prolong your life and help you be comfortable but you will die from it. Lots of people only have months to live once they are diagnosed. Traditionally, out of the 10% remaining only 20% live past 5 years. With the new treatment about 82% of the 10% will live past 5 years. Considering that they have found Scott's cancer much, much earlier than most, his chances of survival are even better than that.
We are very blessed.
We are being treated by a team of 5 physicians at the University of Utah and Huntsman clinic. In addition to the physicians there are physician assistants, nurse coordinators and a variety of counselors who support and help us. We feel that we are in good hands. They are organized and work very hard at providing excellent care.
The treatment is aggressive. First, there is a 5 week round of chemotherapy and external radiation. Next, there are 4 treatments of brachytherapy which is where they apply radiation directly to the cancer via a radioactive wire inserted into a tube put into Scott's liver. Next he takes oral chemotherapy for 2 out of every 3 weeks until a suitable liver becomes available. Scott should be able to have a liver transplant within about 3 months of being listed. After the transplant Scott will stay in the hospital for about 2 weeks. We will then stay in SLC for 2 months and have labs and clinic visits several times a week. Eventually, we will go home and Scott will be on immunosuppressants but be otherwise healthy and able to live a normal life.
Livers are not easy to come by and are given out on a basis of how soon you would likely die were you not to get a liver. This is called a MELD(something end-stage liver disease) score and it is traditionally figured by taking into consideration a persons abnormal liver function and blood clotting tests. Persons with liver cancer do not usually have liver failure, at least not bad enough to qualify for a liver transplant, until it is way too late to have a liver transplant anyway. Liver cancer even in its earliest stages was most likely a death sentence. As of just last year, Utah/California region will gift MELD score points to liver cancer victims who would likely survive with a transplant. This is a huge blessing. University of Utah and the Hunstman Cancer Clinic just approved the treatment program from the Mayo Clinic in Minnesota for cholangiocarcinoma making it possible for Scott to be treated. We are so blessed.
There are too many blessings to list but some of them are the following. Scott is healthy and feeling fine. He should be able to tolerate treatment and recover from a transplant well. We have family close to help us with the kids(Thank You, Thank You, Thank You). We have great insurance coverage. Scott's job is secure and waiting for him. We have the love and support of everyone near and far.
We are happy with our lives and wouldn't change anything even if we thought Scott was dying. We are blessed beyond definition. God loves us. We have been comforted and supported by angels and prayers and faith.
Thank You, Thank You for all of your love and support. I will try to keep this blog updated so that you will know what is going on with our upcoming adventures.
loves!
Here it goes.
Scott has had a liver disease, primary sclerosing cholangitis, for about 13 years. We knew that he was high risk for cholangiocarcinoma, bile duct cancer, because they have checked for it every spring when they clean out his liver with an ERCP(endoscopic something something something).
Well, this April when they did the ERCP everything looked great. We went home thinking it was the easiest and most carefree procedure Scott had had. In May, our hepatologist's office called to let us know that some of the brushing results(biopsy of sorts) had come back abnormal and wanted us to come in to discuss them. (Note to reader: It is never good news when a dr calls you out of the blue to discuss lab results) So, we went in and were informed that the one brushing that was taken came back positive for cancer cells. There is no sign of cancer in Scott's bloodwork, CT scan or to the naked eye. It is the absolutely the earliest stage of cholangiocarcinoma. It is a miracle that they found it so early. From what I can gather it seems about as likely for the dr to walk on water as it is for him to find cholangiocarcinoma at stage 0.
Cholangiocarcinoma is an extremely deadly cancer. There are usually no signs or symptoms until it is too late to treat. It silently forms in the bile duct and produces tumors that spread agressively and are resistant to treatment. 90% of all persons diagnosed with this cancer qualify only for palliative treatment meaning they can sometimes prolong your life and help you be comfortable but you will die from it. Lots of people only have months to live once they are diagnosed. Traditionally, out of the 10% remaining only 20% live past 5 years. With the new treatment about 82% of the 10% will live past 5 years. Considering that they have found Scott's cancer much, much earlier than most, his chances of survival are even better than that.
We are very blessed.
We are being treated by a team of 5 physicians at the University of Utah and Huntsman clinic. In addition to the physicians there are physician assistants, nurse coordinators and a variety of counselors who support and help us. We feel that we are in good hands. They are organized and work very hard at providing excellent care.
The treatment is aggressive. First, there is a 5 week round of chemotherapy and external radiation. Next, there are 4 treatments of brachytherapy which is where they apply radiation directly to the cancer via a radioactive wire inserted into a tube put into Scott's liver. Next he takes oral chemotherapy for 2 out of every 3 weeks until a suitable liver becomes available. Scott should be able to have a liver transplant within about 3 months of being listed. After the transplant Scott will stay in the hospital for about 2 weeks. We will then stay in SLC for 2 months and have labs and clinic visits several times a week. Eventually, we will go home and Scott will be on immunosuppressants but be otherwise healthy and able to live a normal life.
Livers are not easy to come by and are given out on a basis of how soon you would likely die were you not to get a liver. This is called a MELD(something end-stage liver disease) score and it is traditionally figured by taking into consideration a persons abnormal liver function and blood clotting tests. Persons with liver cancer do not usually have liver failure, at least not bad enough to qualify for a liver transplant, until it is way too late to have a liver transplant anyway. Liver cancer even in its earliest stages was most likely a death sentence. As of just last year, Utah/California region will gift MELD score points to liver cancer victims who would likely survive with a transplant. This is a huge blessing. University of Utah and the Hunstman Cancer Clinic just approved the treatment program from the Mayo Clinic in Minnesota for cholangiocarcinoma making it possible for Scott to be treated. We are so blessed.
There are too many blessings to list but some of them are the following. Scott is healthy and feeling fine. He should be able to tolerate treatment and recover from a transplant well. We have family close to help us with the kids(Thank You, Thank You, Thank You). We have great insurance coverage. Scott's job is secure and waiting for him. We have the love and support of everyone near and far.
We are happy with our lives and wouldn't change anything even if we thought Scott was dying. We are blessed beyond definition. God loves us. We have been comforted and supported by angels and prayers and faith.
Thank You, Thank You for all of your love and support. I will try to keep this blog updated so that you will know what is going on with our upcoming adventures.
loves!
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