Last week was mostly spent seeing the world-renowned eye specialist. He was very nice and very knowledgeable. Long story short, we saw him on Tuesday and Wednesday. He diagnosed Mike with uveitis (inflammation of the iris of the eye) and decided the best way to proceed was to take a fluid sample from the anterior chamber of the eye (i.e., needle biopsy of the eye). After withdrawing the fluid, we took the syringe sample ourselves over to Mike's oncologist, who sent it to the lab. We were so edgy that I just called work and told them I wouldn't be in the rest of the week. I could never have concentrated.
Thursday came and went without a call. On Friday, we drove in to see Mike's oncologist. She came in with the news -- the fluid was clear of acute lymphoblastic leukemia cells. We were shocked. We truly had prepared ourselves to hear the worst. So, a small battle was won and we were unbelievably relieved. However, that only made the mystery of this condition bigger.
Mike's oncologist thought it was a good idea to do a bone-marrow biopsy as well as a lumbar puncture while he was there in order to check the rest of his system for any disease. We agreed. (We should have those results within the next few days.) While they did the lumbar puncture Mike also agreed to let them inject a dose of methotrexate, just in case any disease was present in order to get a jump on things.
Friday night was a good night, but then on Saturday Mike began corresponding with the eye specialist, who had asked that we give him the biopsy results. He was happy with the news, but cautioned that things are complicated by the fact that this condition hasn't responded to aggressive topical steroids, and that we haven't yet found the cause. He said treatment of this condition could take a very long time, and that it might call for injections of methotrexate into the eye. Needless to say, all this information sent both Mike and I back into a tailspin of worry and fear.
Right now, we are waiting for final pathology of the eye fluid sample, we plan to see the eye specialist on Tuesday, and on Wednesday Mike has a head MRI, a visit with the oncologist and an appointment with another eye doctor for his take on things.
I wish I could just fast-forward through the coming week.
Sunday, October 31, 2010
Tuesday, October 26, 2010
I Feel My Back Breaking
Today's appointment didn't go as well as we'd hoped. The eye pressure and inflammation is still significant. The doctor we've been seeing sent us to another specialist this afternoon -- a world-renowned specialist in these kinds of eye issues. After spending all day there, an ultrasound of of the eye showed "bumpiness" in the iris. Take that as you will. That could be leukemia. That could be viral. That could be bacterial. We have to go back tomorrow so they can stick a needle in the eye and draw fluid for analysis. We will have the great pleasure of waiting out yet another biopsy for a couple days.
I'm trying to cling to my faith, but we have learned over the past seven and a half years that if it walks like a duck and talks like a duck, it's a duck. We always get the duck.
I'm all prayed out. I'm furious already. If anyone reading this has any prayer chains they can add Mike to, I would appreciate it. Right now, I have nothing to say to God.
I'm trying to cling to my faith, but we have learned over the past seven and a half years that if it walks like a duck and talks like a duck, it's a duck. We always get the duck.
I'm all prayed out. I'm furious already. If anyone reading this has any prayer chains they can add Mike to, I would appreciate it. Right now, I have nothing to say to God.
Monday, October 25, 2010
Reason to Hope
On Friday, Mike's eyes were checked again and the pressure had come down some more, but not as dramatically as on Wednesday. Still, the doctor was pleased that overall the eyes were getting better. He decided to increase Mike's oral prednisone dose to speed up the reduction in pressure. We also talked about the oncologist's concern that this could be related to central nervous system involvement of the cancer, but the eye doc said that if that were the case, the inflammation and white-cell buildup would be in the back of the eye. Mike's issues are in the front of the eye. That filled us with a little optimism.
After that appointment, and some lunch, we saw the oncologist who did some routine neurological tests (e.g., follow my finger with your eyes, squeeze my hands, etc.) and those all checked out. She didn't even think it was necessary to do a lumbar puncture at this point. And again, Mike's blood work was normal. So we concluded the day on Friday in much better spirits than we anticipated, and it made for an enjoyable weekend. On Tuesday the eyes get checked again, and hopefully the improvement is more dramatic.
After that appointment, and some lunch, we saw the oncologist who did some routine neurological tests (e.g., follow my finger with your eyes, squeeze my hands, etc.) and those all checked out. She didn't even think it was necessary to do a lumbar puncture at this point. And again, Mike's blood work was normal. So we concluded the day on Friday in much better spirits than we anticipated, and it made for an enjoyable weekend. On Tuesday the eyes get checked again, and hopefully the improvement is more dramatic.
Thursday, October 21, 2010
Small Improvement
Yesterday, Mike saw the eye doctor again and the inflammation in his retina had gone down by 60% after less than a day on his eye drops. The doctor was very pleased. Mike's CBCs (blood work) came back normal. They are still waiting for other labs which would show if the cause of this was viral.
Meanwhile, Mike's oncologist wants to check if this is being caused by leukemic cells in the central nervous system. I just don't know what I will do if it is.
Tomorrow morning we see the eye doctor again, and then we are going to see the oncologist. With the latter, Mike will likely insist on having a lumbar puncture and bone-marrow biopsy to check what's going on inside.
This has to stop.
Meanwhile, Mike's oncologist wants to check if this is being caused by leukemic cells in the central nervous system. I just don't know what I will do if it is.
Tomorrow morning we see the eye doctor again, and then we are going to see the oncologist. With the latter, Mike will likely insist on having a lumbar puncture and bone-marrow biopsy to check what's going on inside.
This has to stop.
Tuesday, October 19, 2010
Eye Just Don't Know Anymore....
Well, we have another waiting game. Mike's eyes have been giving him trouble and his eye doctor today said there are three times as much pressure in his eyes as there should be. He was sent to another doctor this afternoon and that doc said he doesn't like this inflammation and the eyes aren't draining. He also saw a build up of white blood cells on the eye (big red flag for us). Mike's on five prescription eye drops right now and we go back to the eye doctor in the morning. We are just shaking our heads.
Please pray for this inflammation to go down, and please pray that this is in no way cancer related. Please also offer some intercessory prayer reminding God of His promises to us. Thanks.
Please pray for this inflammation to go down, and please pray that this is in no way cancer related. Please also offer some intercessory prayer reminding God of His promises to us. Thanks.
Wednesday, October 13, 2010
Good Genes
I was notified earlier today that my genetic test results are in. Everything looks good. I am told my "DNA test shows that I am not a carrier of any disease-causing mutation tested." They detected no mutations in the 95 disease tests they ran, from ABCC8-Related Hyperinsulinism to X-Linked Juvenile Retinoschisis.
At least that's one thing we can check off.
At least that's one thing we can check off.
Monday, October 11, 2010
On Second Thought.....
I got my period over the weekend. I didn't call the new RE.
After chomping at the bit for so long, just aching to get back into the whole IVF process at some level, I had a little revelation that I'm prioritizing the wrong thing.
For the past seven-and-a-half years, Mike's cancer has controlled every major decision we have made. It has dictated where we live, what jobs we keep or pursue, what social functions we can and cannot attend, it has affected our finances and our debt, and yes, it has obviously controlled how, when and if we have children. Although we're trying to finally break free from the bondage of cancer, we can't loosen the chains. Our faith and fear are at war.
Mike and I are Christians. Sometimes I think Mike's got it all figured out, while I wonder just how strong my beliefs really are. From the time Mike got saved in 1991 up until the present, there have been events in his life that have made us believe that he is here for a great purpose, and that purpose is not to die of cancer. Other people of faith have spoken prophetic words over his life, and Mike has had his own experiences, for which the only explanation is divine in nature. The bottom line is we believe God has spoken healing over Mike's life. We hold onto this because we have nothing else.
Since Mike's negative bone-marrow biopsy results in May, the doctors have not found any active cancer in his body. Mike has not had any chemo treatments since before we left for our cruise in July. Since then, we have been gently reminded by his oncologist of the nature of his lymphoma, that it can hide and that it often comes back fast and furiously with a recurrence. However, Mike's case has never been typical. The protocol for acute lymphoblastic lymphoma (ALL) is always chemo followed by a bone-marrow transplant, as chemo alone is not the cure in their experience. Since Mike's cancer returned after his second bone-marrow transplant, they don't feel a "cure" is to be. So, he had been on a sort of maintenance chemo regimen to keep the cancer under control, for as long as it works.
Back to our faith, the things that we believe have been spoken over Mike's life have sustained us and have kept us from falling apart. I've clung to the belief in Mike's healing, even when logic and medical "experts" have indicated otherwise. I know that without this belief, I would not have survived his flu/pneumonia hospitalization in January. I probably would have thought the end was coming right there in the intensive care unit. But I latched onto a promise that was given to us.
All that said, a simple doctor visit can bring back all the doubt and fear. On Friday, Mike had his usual checkup and, just as they have for the past few months, things looked great. His blood work was stellar. But before we could celebrate the good news, Mike's doctor reminded him once again that this cancer will likely return -- with or without chemo. That's just the way ALL behaves, she says. She again said she'd like Mike to return to chemo, to stay ahead of any cancer that is likely on its way back, and to keep it from returning with gusto. He said he'd have to think about it.
Since Friday, Mike's mind has been full of thoughts. I know when something is weighing on his mind. All our faith, all our belief in what we know God has told us is being tested. Maybe this is just spiritual warfare, a true battle of good versus evil, and we have to take a side. But this is one choice we can't afford to be wrong about.
We are still believing that Mike is healed. If God can't lie, and He said Mike is healed, then it is so. So why is it so hard to accept that after nearly eight years and more chemo and radiation than any human should have to endure, that the cancer is finally defeated? It is this tornado of thoughts that has me re-thinking moving forward with my IVF testing. Even if we keep telling ourselves Mike is healed, until we BELIEVE it and can confidently turn our backs on a Dartmouth-trained doctor's strong recommendation, then I cannot put my focus back on my desire for a child. I have to make a choice -- accept that Mike is healed and move on, or continue to seek confirmation from the Lord. Over the weekend, I realized that I still need reassurance. My faith is too weak.
After chomping at the bit for so long, just aching to get back into the whole IVF process at some level, I had a little revelation that I'm prioritizing the wrong thing.
For the past seven-and-a-half years, Mike's cancer has controlled every major decision we have made. It has dictated where we live, what jobs we keep or pursue, what social functions we can and cannot attend, it has affected our finances and our debt, and yes, it has obviously controlled how, when and if we have children. Although we're trying to finally break free from the bondage of cancer, we can't loosen the chains. Our faith and fear are at war.
Mike and I are Christians. Sometimes I think Mike's got it all figured out, while I wonder just how strong my beliefs really are. From the time Mike got saved in 1991 up until the present, there have been events in his life that have made us believe that he is here for a great purpose, and that purpose is not to die of cancer. Other people of faith have spoken prophetic words over his life, and Mike has had his own experiences, for which the only explanation is divine in nature. The bottom line is we believe God has spoken healing over Mike's life. We hold onto this because we have nothing else.
Since Mike's negative bone-marrow biopsy results in May, the doctors have not found any active cancer in his body. Mike has not had any chemo treatments since before we left for our cruise in July. Since then, we have been gently reminded by his oncologist of the nature of his lymphoma, that it can hide and that it often comes back fast and furiously with a recurrence. However, Mike's case has never been typical. The protocol for acute lymphoblastic lymphoma (ALL) is always chemo followed by a bone-marrow transplant, as chemo alone is not the cure in their experience. Since Mike's cancer returned after his second bone-marrow transplant, they don't feel a "cure" is to be. So, he had been on a sort of maintenance chemo regimen to keep the cancer under control, for as long as it works.
Back to our faith, the things that we believe have been spoken over Mike's life have sustained us and have kept us from falling apart. I've clung to the belief in Mike's healing, even when logic and medical "experts" have indicated otherwise. I know that without this belief, I would not have survived his flu/pneumonia hospitalization in January. I probably would have thought the end was coming right there in the intensive care unit. But I latched onto a promise that was given to us.
All that said, a simple doctor visit can bring back all the doubt and fear. On Friday, Mike had his usual checkup and, just as they have for the past few months, things looked great. His blood work was stellar. But before we could celebrate the good news, Mike's doctor reminded him once again that this cancer will likely return -- with or without chemo. That's just the way ALL behaves, she says. She again said she'd like Mike to return to chemo, to stay ahead of any cancer that is likely on its way back, and to keep it from returning with gusto. He said he'd have to think about it.
Since Friday, Mike's mind has been full of thoughts. I know when something is weighing on his mind. All our faith, all our belief in what we know God has told us is being tested. Maybe this is just spiritual warfare, a true battle of good versus evil, and we have to take a side. But this is one choice we can't afford to be wrong about.
We are still believing that Mike is healed. If God can't lie, and He said Mike is healed, then it is so. So why is it so hard to accept that after nearly eight years and more chemo and radiation than any human should have to endure, that the cancer is finally defeated? It is this tornado of thoughts that has me re-thinking moving forward with my IVF testing. Even if we keep telling ourselves Mike is healed, until we BELIEVE it and can confidently turn our backs on a Dartmouth-trained doctor's strong recommendation, then I cannot put my focus back on my desire for a child. I have to make a choice -- accept that Mike is healed and move on, or continue to seek confirmation from the Lord. Over the weekend, I realized that I still need reassurance. My faith is too weak.
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