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.