More good news.

 I had my regular check-up on Thursday, and the news is good. My white blood cell count has finally started to climb. In fact it has doubled since last week. My liver and kidney function tests are completely normal. Also, we got the results of the blood chimerism test, and that shows that 90%+ of all my blood is being made by the donor cells, so the transplant is going very well.

It has been warm and sunny here, and I have been getting out more. I was sore yesterday from my hike on Mt. Ascutney. Today, my muscles feel a little stiff, but in a good way. I am going to get out this afternoon for a short hike on the flat.

My energy has been gradually improving and my brain fog has been slowly clearing. I have been having a little trouble sleeping, but since I can nap whenever I want, it is not really an issue. Some days are not productive - I expend all the energy I have doing basic tasks. Of course, just a month ago, I could not routinely do basic self-maintenance tasks - Becky had to fix me every meal and wash the dishes. Now, though, some days now are productive as I pick away at various projects that I had put on hold over the past year.

I still have months of healing to go, and the doctor carefully cautioned me that I am not out of the woods yet, but it is looking pretty darn good. I try not to worry too much about things that I can not effect, but hearing that my white blood cell counts are finally coming up, and that the chimerism is holding have taken off a weight that has been present for the last year. Infection is still a dangerous risk (my white blood cell count doesn't really help against infections because I am on immune-suppressants for the next 4-6 months). But at least it is one that I can take precautions against.

We even have a tentative date to move back to Maine - the weekend of May 11th.

Birthday!

I turned 45 last Tuesday, and that was an achievement in itself. It has been a rough year, and there were times when it was not clear that I was going to see my 45th birthday. Getting a year older was the best birthday present that I could have gotten. I guess there is nothing healthier than having birthdays - the more you have the longer you live.

My brother also headed up raising money for a surprise present for me. Thank you everyone that contributed to my iPad! It was completely unexpected and blew me away. It is really the perfect present for me in that I am too frugal to buy one for myself, and I absolutely love it. I have only had it for a few days now, and can see that by next month I will not fathom how I got along without it.

After I played with it for a day, I can see that it really lets my geek flag fly. The very first apps that I downloaded included 2 reference manuals, a slide rule, 2 chess games, a graphing calculator, a second calculator (that does handwriting recognition) and a star chart. I am who I am.

Becky made me a black forest cake, which is my favorite.

It was a good day.

Day 71, No more graft/host disease!

Had another round of blood tests today. Last week I mentioned that my  tests showed that I have host/graft disease of the liver, and I was a little bummed out by it (even though the doctors were hoping for some because it is good in the long run). Instead of lasting the 2 months that it was expected to last, it appears to be completely gone. My liver (and kidney) functions are testing completely normal.

The last issue that I have is that my white blood cell count is still lower than we hoped for. It is not a cause of serious concern at this point, there are a number of things that the doctors are going to try that might help my counts come up, and there is pretty good chance that the structure of my marrow (the stroma) has been damaged by the treatments in such a way that it is simply going to take a long time for it to heal correctly before my new bone marrow will be able to make lots of white blood cells.

And, of course, I am still on high immune suppressants, and the combination of immune suppressants and low white blood cell counts means that I still in a high-risk part of my treatment. So I am continuing to be vigilant with bacteria, virus, and fungus precautions.

I have been feeling quite a bit better this week (it might just be the massive amount of steroids that they have me on). It might also be that spring has finally reached Vermont, and I have been going for nearly daily walks in a nearby woodland park. Walking in the woods has always done so much to sooth my anxieties and heal my soul.

I have to remember though, that despite feeling better, I have practically no immune system. I don't have to wear my filter mask in the woods, but I can not touch any wood or soil. I put my mask on if I can see people or pets. I have to put my mask on if I catch any scent of manure or woodsmoke. I have to be vigilant about washing my hands and face, washing my food, including things like the outsides of oranges and cans.

The odd thing, I think, is that there is no real correlation between how I am feeling and how strong my immune system is. I have always tended to imagine that the better I felt, the stronger my immune system was, and the less I had to worry about getting sick. But now, there is no relationship. I can only go by the blood tests and see if my neutrophils have gone up or down or stayed the same.

Anyway, things are looking nearly as good as could be hoped for - good enough that I might be able to skip one of my bone marrow biopsies! And there is a good chance that Becky and I will be able to move back to Maine within a month or so. 

Day 67, feeling better but have some graft/host disease.

It has been quite a while since I posted, but very little has changed. This part of the healing process is like slogging through hip-deep mud in the fog. I have a hard time to tell that I am getting better unless I compare it with last month, when I was metaphorically slogging through chest-deep mud in the fog. But things have been steadily improving. I have a little more energy, a little less fatigue, a little less pain, and a little less nausea.

I was hoping that my blood tests would be stable, and we would start having to go to the hospital every other week, instead of weekly, but last Thursday we had a slight hitch. It was  found that I have some graft/host disease primarily in the liver. This is not necessarily a bad thing. The doctor was hoping that I would have a mild case at some point, as it lowers my chance of having a relapse of lymphoma in the future.

There are a couple of ways that graft/host disease can manifest - in the liver, in the skin, and in the GI track are the most common. Of them, the liver is the one that takes the longest to get over, but it tends not to have any side effects if it is kept under control. He upped my immune suppressants slightly, and put me on steroids to contain the problem. It should correct itself in about two months.

I have been feeling pretty isolated. Because I am on immune suppressants, I can not go out in public, and I don't have many friends here. Other than Becky, and the people at the hospital, I see someone else less than once a week. However, if my bloodwork this week show that the graft/host is stable, then there will be no real worries, and we will go to meeting every two weeks instead of every week, which will allow Becky and I to move back to Maine. At the very least, because we will be moving in with my Mom, that will double the number of people that I see on a regular basis, and it will also make it pretty easy to pop up to Belfast for a weekend. So I am really looking forward to that.

Leif

Day 51 - just past halfway!

I met with the doctor yesterday, and things are going as well as could be hoped. I am continuing to taper off one of the immune suppressants, and was put on penicillin as a prophylactic antibiotic. I mentioned that while I can see that I am improving week to week, it seems my progress is slow. On any given day I still experience some pain, nausea and almost always severe fatigue. He reminded me that this is a long process, and that my body is working hard.

This was driven home to me when I was weighed and discovered that I have not gained a single pound since I left the hospital. I feel like I have been eating non-stop, and I have not been skimping on the fat. I have gone through a pound of ghee, eat handfulls of nuts, lay on the butter, and spread cream cheese a quarter-inch deep on my bagels. Bowls of beans and plates of starches. I often get up at night because I am hungry and eat a cup of cottage cheese and make a sandwich. or two. or three. If I had been eating this way last year at this time I would have gained several pounds despite playing ultimate frisbee and working in the woods in the cold. And despite the fact that I am still sleeping, or at least resting for 12- 14 hours a day, I have burned off all these calories.

It is hard to believe that my body is working harder at a cellular level than I ever work it when I am healthy, but that seems to be true. At least it explains why I am so tired all the time. I am not really sure what it is doing, now that it has reached full chimerism, but whatever it is doing, it is working hard at it. When I was told that recovery takes 8 months or so before you even start to work on rebuilding the lost muscle I was pretty skeptical, but now that it is getting towards 2 months for me, and I see the glacial rate that I am improving, I realize that it is going to be a longer haul than I had hoped.

So day 50 is halfway, but halfway to what? I wish it was halfway to my recovery, but alas, no. It is halfway through my dangerous recovery period - the period when relapse, infection and host vs donor disease is the most likely. If my last bone marrow biopsy (on day 90) comes out well, then I will be transitioning from weekly visits to monthly visits around day 100. Becky and I will be able to move back to Maine, where we will be moving in with my mother for several months. I am looking forward to that, as is Becky. Having someone else help with my caregiving will be nice for her.

Can-Am sled dog races.

Cancer sucks, and while I have had an interesting year, I have missed out on a lot of things that I love doing. One of the things that I missed this year is my yearly trip to help out at the Can-Am sled dog races up in  Fort Kent. In the beginning of March, Scott and I usually wrangle one or two others in going up and helping at camp Maibec, which is about as in the middle of nowhere as you can get.

Camp Maibec is in the lower left corner. The red is the trail for the 250 mile race,
so Maibec is about the half-way point. The thick yellow line is the state boundary,
so you can see there is not much else around. Portage lake, (on the lower right) is adjacent to the
town that I grew up in, and only has a pop. of about 390.

I have been going up for 6 years or so, and look forward to seeing my friends up there, the dogs, the snow, and the race in general.

The dogs and the snow. It is just gorgeous up there at that
time of year. Those are some happy dogs.

Obviously, this year, I was unable to go. Last week, I got a package from a Michaud, which puzzled me for a bit. I know several Michauds, but none from St. Albans. Anyway, I opened it up, and it contained a very nice card signed by the Maibec gang, a tee-shirt that was also signed, and some nice teas.

Me, feeling the love.

I am really touched that with all the running around that has to be done to prepare for a race like that, they remembered me, knew that I am fighting lymphoma, and sent out a care package. The support from my friends and community has warmed my heart, as I discover that my community continues to grow. I am looking forward to being up there next year. 

Yesterday, I finally got my chimerism report from my bone marrow biopsy that I had last week. Chimerism is the ratio of donor cells to my cells, and since the whole purpose of the stem cell transplant was to replace my bone marrow cells, we have been hoping that the chimerism would be pretty high. 

It was. 95+%, which is as high as the test can measure. I have full chimerism. Along with the fact that they found no lymphoma in my bone marrow, I could not have gotten better news. That was THE big milestone, and now I am sure that I will make it from here. I know that it is still a long road ahead, fraught with possible life-threatening difficulties and yada yada, but I can't say that I am worried anymore. I have made it this far, and beat ridiculous odds. 

How ridiculous are the odds? I was pretty quiet about this, partly because it was not clear to me until near the end of the year, and partly because there was no sense in worrying my friends more that I already had, but I am only one of two people that have had Aggressive Mantle Cell Lymphoma and lived. Many more people have walked on the moon than have survived this disease. Interestingly, the other person that has made it, is only about 4 months ahead of me in treatment. This is one of the big reasons that the doctors have been unsure about what will happen next. There is just no data. I am very lucky to have had the doctors and nurses that I have had to see me through this. 

For the last (long) leg of the treatment, I am planning to take it easy, and do just fine. In a few more months, we will be able to move in with my mom in Brunswick, and Becky will no longer be the only caregiver, and we will be closer to all our friends. I am looking forward to it. I will still not be able to see very many people for most of a year as I rebuild my immune system, so I will not be showing up to frisbee or parties any time soon. I am looking forward to the time when I can. I love you all.

Leif

Day 40, Good news

I got a phone call today from Kate, who is the co-ordinating nurse. She had some good news for me. Last week I got a bone marrow biopsy, and we have been waiting for the test results. There is zero lymphoma in my bone marrow. Does this meant that I am cured? Probably.

I wish that it definitely meant that I am cured, but biology is pretty subtle. I had a bone marrow transplant to get rid of my stem cells in my bone marrow and replace it with my donor's, but that does not happen all at once, nor does it happen completely. The ratio of donor cells to my cells is called chimerism, and we are still waiting for the results of that test. We might hear by the end of the week, but it might be early next week.

The possibilities are that my chimerism is high (i.e. most of my bone marrow has been taken over by my donor's cells) and that would be great news. It would mean that I am essentially cured. However, if my chimerism is still low, then I still have a lot of my own cells, and they will eventually start producing cancerous cells again. All will not be lost, as chimerism can take up to 100 days after transplant, and my test was only on day 35. Even if my chimerism is low, the donor cells still could take over.

On the other hand, even if my chimerism is high, my remaining cells might rally in a few years and start taking out my donor cells. I think this is unlikely as most transplants are permanent, but this is why I will have to continue having a yearly biopsy for the foreseeable future.

I still have a ways to go, and I am not out of the woods quite yet. Because I am on immune-suppressants, infection is still a huge risk, but I have passed an important milestone, and am feeling pretty positive about the road ahead. 

Day 37, Gaining Energy

Posted by Becky

Leif's energy has been gradually increasing. It's not very noticeable day-to-day, but it's definitely noticeable week-to-week. For example, two weeks ago he didn't have the energy to read, but this week he's gotten almost halfway through Come Spring.

He also has been doing some cooking, making his own breakfasts and lunches, doing some computer drafting, and getting exercise. Next time I ambush him with the camera, I'll ask him to look up and smile, for some friendlier pictures than these.

At yesterday's clinic visit, Leif's labs were back up to the levels of his Day 22 visit, probably because he stopped taking the antibiotic that suppresses bone marrow. His blood counts (platelets, hemoglobin, and white blood cells) are still low, but not awful. Quitting the extra antibiotics has helped with the nausea a great deal; he is still queasy immediately after taking his pile of pills morning and evening, but feels better about an hour later. The nurse reminded him yesterday that he has medications to help with that level of nausea. He'd gotten out of the habit of taking them, because more pills were not helping. At the clinic he also realized that his pain level was a zero - no pain at all! Not even any pain in his side from his spleen, which still seems to be getting smaller. He's able to squat down to put his shoes on, and do some stretches where he bends forward, carefully.

While continuing to taper off the pain medications, Leif is also taking this opportunity to taper off the Ativan (lorazepam) that he was taking to deal with awful drug-induced nightmares. The nightmares are gone, but a common effect of stopping lorazepam is insomnia. It's a little ridiculous, because he can nap fine during the day, but at his evening bedtime, when he would normally take some lorazepam, not taking it leaves him wide awake. He's not getting sleep-deprived, because he can nap, although he's been trying not to nap too much so he'll be sleepy at night. Two people in a studio apartment, one of whom works during the daytime, and one of whom can't sleep at night, can become cranky.

After the clinic visit yesterday, he got another bone marrow biopsy. Thus his pain level is non-zero again. He got sedation during the procedure, so that wasn't bad, but experience says he'll be sore for a couple of weeks while it heals up. The results won't be back for over a week, because the chimerism test takes a long time. The laboratory differentiates Leif's marrow cells from the donor marrow cells by testing DNA in the sample.

Day 29 Doctor Visit

Posted by Becky

Leif had a long day at the medical center today. We started with a 6:30 check-in to get his central line removed. He still has his port, which is under the skin, but they took out the triple line into the left side of his chest, through which he got his stem cells. That is nice, because once the hole heals up a bit, he can take showers without wrapping his chest in plastic, and we won't have to flush all the lines every day. It is also one fewer infection risk site, once it has healed.

Since Leif's had bad experiences getting these types of lines put in, he opted for sedation for this procedure (which is why we had to check in so early). The sedative worked fine this time, and he did not remember the procedure, which went well. The prep/recovery room had a great deal of craziness going on today; I'm relieved to report that Leif was not one of the patients for whom anything went pear-shaped. It's nice not to be in the cubicle full of people looking serious for once, although I definitely feel for those who are.

After that, he met with the transplant/hematology nurse practitioner and doctor. His kidney labs looked a lot better this week, thanks to his efforts to drink more fluids. His blood counts were down, likely due to the linazolid antibiotic, which suppresses bone marrow after it's been taken for a couple of weeks. His course of that finished today; his next visit, with the Infectious Disease team, confirmed that he can stop taking both of the antibiotics he was taking for his butt infection, linazolid and ciprofloxacin. He was on a whopping big dose of ciprofloxacin. We are hopeful that stopping these drugs will allow his blood counts to bounce back, and possibly reduce the amount of nausea he's been experiencing.

The doctors are somewhat concerned about this nausea, which has been constant since his transplant. That's not typical. While it doesn't appear to be GVHD, it could be, or it might be an infection. They have started the process of scheduling a visit to the gastroenterology department to investigate further. It's only due to Leif's incredible stubbornness about eating even though it's the last thing he wants to do, that he hasn't lost quite a bit of weight. As it is, I am concerned that his nutrition and fitness levels are suffering, since he hasn't been able to eat a wide variety of foods and he spends a lot of time lying down/sleeping since that helps him survive the nausea. Also, it's depressing for him to be queasy all the time, in addition to feeling fatigued and low energy.

A friend of my aunt Prue's has loaned us a Nordic Track, so he can exercise without going outside. That's been great, since he hasn't been able to maintain his body heat, and he gets unhealthily chilled when he goes for walks outside. (It's still usually below freezing here in Vermont.) He can't use the Nordic Track for long at all, but he is able to get moving on it a couple of times a day, plus doing some gentle strength training and stretching exercises.

Another thing that might help is that Leif is continuing to taper down his painkillers. Both taking narcotic painkillers and stopping them can cause nausea. In general, he is taking just an enormous number of pills twice a day, which definitely contributes to the queasiness. The fewer he can take, the better. The cyclosporin immune suppresant definitely contributes; on the days when he's needed to hold a dose since his blood levels were too high, he feels better, until the next dose. The cyclosporin is very important for him to take, though; in a few weeks, he will start to taper down the mycophenolate (CellCept) immune suppressant. After he's off that completely, he'll start tapering down the cyclosporin. So the end of taking cyclosporin is not yet in sight.

After seeing the Infectious Disease docs, Leif reported to the cancer center infusion suite, where he got a small dose of IVIG and took a nap while I ran a couple of errands. Then we finally got to go home.