You are feeling verrry sleeepy

Posted by Becky

What has Leif been up to, you ask? How is he doing? Leif has been sleeping. He gets up for an hour in the morning to eat and take medicine and deal with anything else that needs to be dealt with, then he goes and takes a nap. He does something similar at lunchtime, and tries to get some exercise. At suppertime he's usually up for 2-3 hours. His labs are looking okay; he just has a ton of fatigue. He makes an effort to exercise every day, generally by taking a walk, to build his fitness levels and combat the fatigue.

One of his doctors said that we can think of the DLI as a second transplant without the heavy-duty chemo and radiation first, and I think that he is experiencing something similar to the post-transplant fatigue he was feeling in February/March.

We have enjoyed visits from Leif's sister Fiona and friends Mike and Carol. I'm back at work and enjoying having something resembling a regular routine. Leif has been putting energy into keeping the information flowing so a crew can, at long last, finish our house. 

Out of the hospital.

I am out. Got released yesterday afternoon, which is a full week earlier than they had originally suggested. I have a meeting with Dr. Meehan on Thursday, so we are staying with my second cousins (my mom's cousins) who live in Vermont. They have a beautiful home on some beautiful land and they are two of the sweetest people you could hope to meet. Becky and I are enjoying sitting on the porch reading, looking out at the gardens. The day has been very nice. 

I am doing well enough that they did not bother to drain the rest of the fluid from my lung, but believe that it will be re-absorbed naturally. My breathing seems to be uninhibited, although it is not like I am doing windsprints or anything very challenging. The lymphoma is in remission, although it still shows up on the PET scan. The doctors and I believe that my donor cells are going to take care of it. The doctors believe that it will try to relapse eventually, but we can keep it suppressed with the chemo drug Velcade before it becomes an actual relapse. So my worst-case scenario has changed from "September" to "several years".  Basically, until my lymphoma become resistant to the Velcade. I still have high hopes that my donor cells will stay ahead of the lymphoma indefinitely. While I will never be "cured" because my lymphoma is refractory, if I never have another relapse, it is basically the same thing. As long as the donor white blood cells recognize and hunt down the lymphoma faster than the lymphoma reproduces, I will not have a relapse. I have some faith in my donor cells. So far they have responded well above typical. Go team!

The only problem I currently have is a pain in my abdomen directly below my spleen. Nothing showed up on the PET scan or on the X-ray that I had, so it is probably not anything that will lead to further complications, but it hurts quite a bit. I am on a good amount of pain killer, and it is all for this abominable pain. It has been going on for about a week. Originally we thought that it was a gas bubble, as some of the medications that I was on were causing me some problems in that area, and then the thought was that perhaps something was bruised. Although Becky just reminded me today that I had a very similar pain, in the same place when my spleen was shrinking. It is, in fact, shrinking again. So that might simply be the problem. There is probably still scar tissue in there from when it was so swollen, and is it shrinks it tugs on things and pulls in ways that are uncomfortable. It is one of the things that my doctor and I will discuss on Thursday.

If that meeting goes well, we will be back in Cundy's harbor that evening, and back in Brooks on Friday. We are planning to stay up there permanently, except for regularly scheduled trips back to Dartmouth-Hitchcock for check-ups. We are excited to finish our house, so that is the big push through the end of the summer and the fall. 

Leif

PET scan and T-cell infusion results.

Quite a bit has happened since my last post. I have been told that a number of my posts are overly technical, so I will do a quick summary, with details below for those who want them.

On Monday I got a scan that showed that my more lymphoma was killed by the chemotherapy than was expected. They also removed the tube that was draining fluid from my lung removed. Good day.

On Tuesday, I got the last dose of the light chemo. I also got the T-Cell infusion, which consists of adding 5 million of my donor's previously frozen white blood cells to my system to help fight the lymphoma and repair any damage to my bone marrow that the chemo may have caused. Both the chemo and the infusion made me feel pretty bad, and I had a mild reaction to the infusion. The reaction faded by the next day, but I have been pretty fatigued for the last few days. I am currently feeling pretty well, and doing better than the doctors expected. They may release me earlier than I was expecting. Perhaps even early next week.

Gory details:

So, the PET scan on Monday was freaking rough, not just because of the 3/4 of a liters of contrast that you have to drink before hand (and contrast is one of the worst beverages I have ever had), but because the tube into my lung, which they call a "chest tube" is pretty fricative, and it sort of got caught when the PET scanner moved me into the scanning drum. It tugged fairly hard and was excruciating. There are, of course, no technicians actually in the room when the scan is running because it is radioactive, but they heard me, turned off the machine and did take care of the problem by taping the hose directly to the table after giving me enough slack. I had repeatedly warned the technician that the hose was going to be a problem. I had intended to tuck the hose slightly under my butt to prevent exactly that sort of thing, but I got secured on the scanner board before I could do so. So I was unhappy about that. Having a tube that goes through your back, between your ribs and into your lungs tugged on feels just about as unpleasant as it sounds. It did not, however, pull out. Thank goodness. 

The result of the PET scan showed that the lymphoma responded to the light chemo better than was expected. We knew it WAS responding because my lymph nodes had stopped being swollen and had gone back to normal. This is really important, because my lymphoma has never responded to light chemo before, and the dire prognosis from June was based on that fact. If the lymphoma had not responded to this particular course of chemotherapy, there was in fact a good chance that I would not have made it past September. So, since it has responded better than expected, it is thought that we can keep it in remission by having me tested regularly, and before it actually gets to the point of relapse, hit it with a dose of Velcade and my donor T-cells and B-cells will be able to keep it at bay. 

The PET scan also showed that there was still some liquid in my lung, but it was in a different pocket than the tube, so the tube had to be repositioned. Later that day they sent me down to have that done. There were two posibilities. One was that they could fiddle around with the tube without taking it out and get the end into the other pocket. The other possibility was that they would have to take the tube out and put it back in, in a different position in order to get into that pocket. Since I am not longer symptomatic (my breathing has been deep and pretty clear), If it was the second case, I advocate fiercely for taking the tube out completely for a while, and they could put a second tube in again in a few days. Give me a break from having a tube in my back. It did turn out to be the second case, so I advocated with the nurses, who had sympathy, but voiced the opinion that it was unlikely to happen. I advocated with the doctor, who listened, paused for a while and then went to consult with her colleagues. She came back and said that they all thought that was a wonderful idea. Yay!!! So she pulled the tube (I did not get any painkillers for this, and in fact it did not hurt beyond a sharp pinch, but it was one of the weirdest, most disturbing sensations I have ever felt. The tube went more than half-way inside me, and when it came out, it felt like a rib, or part of my lung, or SOMETHING important inside me came out with it, but it was just the sensation of my body having gotten used to the tube there being surprised when it suddenly was gone.) I felt immediate relief. The tube had been hurting me more than I had realized, and in less than an hour I was feeling my usual joy at being alive. While the tube was in me, I was feeling pretty grim. It was hard to truly be upbeat. 

There was a little incident about an hour later, when the dressing over the hole suddenly was soaked with some last bit of lung fluid and blood, and it sort of ... spurted out. It did not hurt, and it probably is a measure of the roughness of this last year that I found it funny, hitting the nurse call button, trying to keep pressure on the dressing, and moving quickly away from my laptop, so not to get this nasty fluid on it. It was easily cleaned up and the dressing changed. I kept some pressure on it for about an hour and it has been fine since. 

The next day, the last of the Velcade. This drug attacks fast-growing cells, so it tends to make me nauseated, and it did. I rested until they came in to do the DLI, which is the same as the T-cell infusion. Unlike last time, the cells were frozen. The cryogenic preservative is pretty nasty and also lead to me being a little nauseated. They did not have to give me a new line, but were able to put it through my port. Or so they thought. Then at the last minute, with the nurse standing there, and the time ticking away (because after the cells are thawed they have a limited time to be put in the body - about 10 minutes), they realized that they were not POSITIVE that the cells could go through a port. A call was put into the doctor. No response. They had another nurse poring through the available information. Typically the cells are put in through a central line which is bigger than a port. The cells are fairly large and somewhat sticky, so putting them through a line that is too small might kill the cells or clog the line, or both. The other nurse came in and said that the doctor had not yet returned the call, but all the information she could find IMPLIED that a port line would work just fine. The cell technician and the attending nurse took a deep breath and went for it. Just after she had put the last ones in (it is a 5 minute push) the doctor called back and OK'd the procedure. Whew!

I had a light outbreak of Graft vs Host disease, which was not really bad, since it meant that the T-cells had made it in alive and were doing their job. The outbreak consisted of a rash around my neck, chest and upper back. It does not itch yet, but it will later, when the skin begins to peel. At least it doesn't hurt.

So the last few days I have been napping quite a bit. I have taken some walks. A loop around the hospital, on the inside works out to be about 1/2 mile according to my pedometer. I try to walk a half mile a day, and sometimes I am up for two loops. I have been having a little gastric distress, but nothing major. Otherwise, things are looking very well. 

Leif

Who is this guy?

My hair has grown back darker and curly. The steroids have puffed up my face a little, so it is rounder. Combined with my prosopagnosia, I can not recognize myself in the mirror anymore. At all. It is hard to express how weird this is. Intellectually, I know that the reflection in the mirror is me, and not some guy standing behind me, but I can not recognize myself. The reflection in the mirror seems like a complete stranger.

I am not the only one. Today a doctor came in that had worked with me last time I was here, (when I had no hair) but had not yet seen me for this visit. He looked right at me and asked, "Is Leif here?". He had thought that perhaps I was Leif's brother. I suppose that all of you that know me well will be able to recognize me from my picture below, but I tell you, it is weird not being able to recognize yourself in the mirror. For one thing, it makes it hard to shave. You don't want to do something like shave with someone else's image.

Not the best shot, but you get the idea.

The lymphoma seems to be responding to the light chemo better than I expected. In the past, light chemo really has had little effect because the cancer is so aggressive. I am hoping that a large part of the effect that we are seeing is because the donor cells are off immune suppression and are getting into the fight. If this is the case, then the treatment that I am getting next week (the infusion of another 5 million donor cells) is likely to be effective in bringing me into remission and keeping me there. Go donor cells!

I am feeling a little better each day. There does not seem to be any more buildup of fluid in my lungs and I can breath freely. My pulse rate is down to a place that is no longer scary. I am a little low on blood, so that tends to lower my blood pressure and increase my heart rate. Last week my pulse was in the 130+ range, but now it is around 100 beats/min. Which is still fast, but not scary fast. Last week they gave me a lot of saline solution to increase my blood pressure, which it did, but it also made my legs into swollen sausage-like tubes. This has since gotten quite a bit better and I am able to go on short walks again.

Leif

Analogies.

I have been thinking about the WWII analogy that I used the other day. I like it. It helps me visualize what is going on and I think that it helps me use visualization to help out my little hard-pressed cells. What I have been wondering about, in this analogy, is: Who is Russia? I decided that Russia represents my own unwavering tenacity. My ability to be knocked down, stomped on, hurt like no one should hurt, and get back up again and take another step forward. Zombie Nazis hate that type of tenacity.

Italy represent all the other incidental illnesses. The abscess that I had, the pneumonia, that sort of thing. Things that would be no problem if I weren't already dealing with Zombie Nazis. Irritations and illnesses that are dangerous, only because I am fighting a much more dangerous threat.

On another note: I had my 2nd round of Chemo out of 4 today. This round was Velcade and Bendamustine - both are poisons that are taken up by quick-growing cells, like the lymphoma. So my good B cells and T cells, which don't divide are completely untouched by these drugs, and the lymphoma is seriously weakened. We do 2 more rounds and then throw in 5 million T cells from my super-human donor. They will act like the D-Day invasion force and start destroying the lymphoma in winning numbers. The only down-side to the chemo is that it may be hurting my bone-marrow stem cells. They are relatively fast-dividing cells, so they are going to take a bit of collateral damage. This is why we are shoring them up with the T-Cell infusion. After the chemo, they will have to take some time before they are back up to full force and health. The infusion will cover for that period. Then, if my Chimerism stays high, I should be good to go.

We hope that the fluid in my lungs will clear up when the lymphoma starts get beaten back and is pushed into remission. We are not certain of the cause of the fluid though, so it is one of the things that we just have to wait and see how it goes.

Ending on a good note, my Graft vs Host Disease has almost completely cleared up in my skin, and does not seem to be coming up in my liver or kidney numbers. I have been having good conversations with my new blood cells, and I think that we are all on the same page now. :)

Leif

Saturday, day 1 of 11 of chemo.

The good news is that the test all show that I still have 95%+ of chimerism. This means that the donor cells are doing their job, engrafting in the marrow and producing effective white blood cells. The planned Donor lymphocyte infusion (which I have been mistakingly calling a T-cell infusion) has a good chance at helping out the donor cells fight the lymphoma.

The bad news is that my lymphoma has mostly recovered from the chemo that we gave it last year. My spleen has not grown huge again, but there are high lymphoma counts in my blood and in my "soft tissue". I think that soft tissue in this context is muscles, tendons, and ligaments. The CT scan shows numerous lymph nodes that are trying to sequester the disease. It does not appear to be in my bones, lungs, or other organs.

So, in order to give my DLI (Donor lymphocyte infusion) a better chance, we are going to hit the lymphoma with a low does of chemotherapy. The chemo drugs that I am taking are: Velcade, Rituxan, and Bendamustine. These have the benefit of being harder on the lymphoma than they will be to my new donor cells, and more importantly the stroma - which is the honeycomb structure in your bone marrow where your stem cells live.

I had my first round of chemo today, and it went very well. I have often had reactions to Rituxan in the past, but I did not have any problem this time. In fact, the drug that I took that had the most adverse reaction was Benadryl, which they gave me to ease my reaction to Rituxan. I guess it worked, so it was worth it, but I was in a fog all morning. I was trying to get out an email, and found that my brain had apparently turned off and I had a couple paragraphs consisting of nothing by the letter "n".

The other chemo drugs also went well today, with no noticeable adverse reactions.

The analogy that I have using to think about this latest round of care is from some alternate history of WWII. Where my body is Europe and the lymphoma are Nazi zombies (because they are undead B-cells; B-cells are not supposed to be able to reproduce on their own, without bone marrow stem cells), and my old immune system was the French, with their Maginot line.

I know that people mock it, but it was such a good defense that the Nazis did not even try to attack it, but instead snuck around through Belgium. I compare that to the betrayal of my own B-cells to become lymphoma cells and become invisible to any good B-cells that I might have had left. The donor cells are the British. They need more time before they get strong, and so are not able to help out the other besieged counties. They also might accidentally attack a county that they are supposed to be allied with (Graft vs Host Disease). The DLI is like the Americans. They come in way behind the time that they are needed, but with serious force. They work with the British to plan D-Day, re-take Normandy and beat the Nazis back to Berlin. Then they are done and mostly leave, leaving Europe in bad shape, but still existing.

So in this analogy, the chemo is like carpet bombing. It is hurting the Nazis more than the Brits, but there is a lot of collateral damage on both sides. It does buy time for the D-Day invasion, and it helps even the playing field between the mass-production of the Nazi war machine and the relatively green British troops.

I also like this analogy, because there have been no relapses of the zombie Nazis. Sure, there have been some minor wars in Europe since then, but nothing that threatens to make Europe as we know it cease to exist.
___

Pam brought over a turnip casserole, swiss chard, and salad greens. Delicious. So far, the only thing that I have eaten from the DHMC during my stay here are salt, pepper, 2 hard-boiled eggs (how do you even get the inside of a hard-boiled egg that green?), milk, sugar, and bottled water. They did get me a fridge and containers of Brown Cow, full cream, blueberry yogurt. I am planning to have the yogurt for breakfast. At least in my analogy I am not stuck with MREs, and other fun war foods.

Becky is staying at our friends Peter and Brita tonight. She slept in the hospital the last two nights, on a cot that they brought in for her. She is planning on taking a relaxing morning and won't be coming by until the afternoon. It is important for her to get some rest and have a day where she is not bombarded by hospital stuff. I hope that I can convince her to do it more often, but of course, when she is away, she worries about me, probably just as much.

Leif

Bone marrow biopsy

Had a meeting with Dr. Meehan this morning. We don't have a plan, so much as a flow-chart. We have to balance the negative effects of Graft vs Host Disease with positive effects of Graft vs Lymphoma Effect. But only after we know how much of the disease is in my body, and what is causing the fluid in my lungs. So I am likely to be here between 1 to 6 weeks.

I had a blood biopsy yesterday, a skin biopsy today, and I just got back from having a bone-marrow biopsy. It will take a few days to analyze the results and start to get a picture of what is going on.

They started draining my lung again about an hour ago. They don't want to take out more than 2 liters per day, unless it becomes an emergency. There are issues of damaging the lung if fluid is taken out faster than that.

My mother-in-law, Pam, is up with us here at DHMC, and staying with her sister, Prue who lives just a few miles away in Vermont. She has been in charge of fixing both Becky and me delicious food. It has been really a boon - both because the food here is so bad, and also because poor Becky has really needed some TLC as well. It has allowed Becky to just relax and hang out with me at the hospital.

So, until the test come back, we are not sure what will be next or even what therapeutic route we will be taken.

Leif

Déjà vu, with ornamentation.

A lot has happened since my last post. Becky and I spent the weekend up in Brooks. I got some trees marked for felling this coming Sunday, played some cards, and had a nice dinner at Kristen's. Other than that, I rested. I seemed to be having trouble breathing. At first I thought it was just the heat. It was in the mid 80's and I don't do well in temperatures over 70.

But, when we got to Cundy's Harbor on Monday evening, I had an acute attack of shortness of breath. I had bent down and exerted myself slightly, but I had not been able to breath bent over for the last day and a half or so, and the slight exertion seemed to put me over the edge. Even after I stood back up, I could not catch my breath. It felt as I was drowning in my bedroom. I signaled to Becky that we need to go to the hospital immediately. She asked if she should call 911. Yes. I was worried about being asphyxiated in the time that it took to get to the hospital. By the time the ambulance came, I had caught my breath, gotten dressed, and packed for an extended stay. But I was glad that the ambulance had oxygen. They put me on 3 liters, and whisked me to Midcoast, in Brunswick.

After I got there, they gave me a chest X-ray, and the lung that they had drained on Thursday was more full that before they had drained it. In fact, it was nearly completely full - pushing on my esophagus and my heart. They did an emergency drain, which contained a lot of blood. A rare complication of draining a lung is that they can hit a blood vessel (less than 1%), and lucky me, it seems as if that is what happened.

After being stabilized, they put me on an ambulance and whisked me to Dartmouth Hitchcock Medical Center. I was given 2 units of blood to help make up for what was lost in the lung and monitored through the night. I slept pretty well all things considered.

They determined at Midcoast that not all the fluid in my lung was blood, so quite a bit of the other fluid had re-accumulated. We do not yet know what this other fluid is other than it is not infectious, and does not contain lymphoma. It is probably either a by-product of Graft vs Host Disease or Graft vs Lymphoma effect. We certainly hope that it is from Graft vs. Lymphoma effect.

At noon, they put in a tube that stays in, and drains off the fluid at the rate of 2 liters a day. I am not completely drained yet, but my breathing is better. I have this plastic tubing coming out of my back like some sort of tail dreamed up by Salvador Dali. The incision and the weight of the tube is less than comfortable. I would not suggest getting one installed, no matter the power of the fashion statement that it makes.

Becky and her mother Pam arrived this afternoon as I was getting in my tube. Pam is currently out getting me some actual food, since DHMC has some of the worst hospital food imaginable. They don't slice the tomatoes here for the salads. Just throw them in whole. And black olives? I wish.

Tomorrow, I am getting a bone marrow biopsy. This one should be under more sedation than my last. I hope that it goes well.

Anyway, not what I was planning to do this week, but that is what is going on. I will keep people updated as things progress.

Leif

2nd Thoracentesis

Since there was that error in the orders for draining the fluid in my lungs (thoracentesis), the scheduled me the next day. The operation when smoothly, did not hurt at all, although the muscle where they poked me is a little sore. This time, instead of draining a sample for testing, they drained out as much as they could. How much you ask? 3 liters.

During the procedure, one of the nurses walked by with a 2 liter container of the nastiest phlegm/blood product looking stuff I have ever seen. I thought "man, I hope that didn't come out of me", but even as I was thinking it, it seemed absurd, because it was a 2 liter container. Way too much to be in a lung cavity. I was wrong. I didn't see the second container, but they told me that they had drained just over 3 liters, including what they had taken off the day before.

Definitely explains my difficulty breathing.

So, the procedure helped quite a bit. It will take some time for my lungs to re-expand into that space, and as they do so, they are a little sore, so slow, careful deep breaths for the next few days. But I can walk again without getting short of breath, and life is pretty good.

Leif

Tuesday office visit.

I met with Dr. Connelly on Tuesday. This was a routine office visit, and she is mostly checking for signs of Donor vs Host Disease (none were found). However, during the last few days, I have experienced some swelling in my lymph nodes and more disturbingly, fluid in my lungs. This is not completely unexpected, because I have tapered off the steroids, and they had been helping to keep things in check. Still.

So before we met, she had me go in for a couple of chest X-rays to see how much fluid had built up. It was enough to be a concern, so she ordered some to be extracted. I was not looking forward to this, despite enjoying the ability to breath, as it involves sticking a needle into the lungs and draining off the accumulated fluid.

They were able to fit me in that day. When I got to the surgery area, the guy that runs the ultrasound and the doctor were both really nice (the nurse was really nice too). He explained that while it sounds horrible, it is not that bad of a procedure. First of all, the fluid apparently is not actually in the lung, but in the tissue around it, and the weight of the fluid is what prevents the lung from expanding. So they will not be poking a hole in my lung. The downside is that the fluid is not all in a continuous pocket. So, they will go in through my back and drain the largest cavity.

There was some confusion, because the orders were to just take a sample for testing. My understanding was that they were going to drain out most of the fluids so that I could breath better. The surgeon told me that therapeutic drainage was pretty different surgery. It was basically the same technique, but because they would have to go in multiple times, the risk was different (both of infection, and there was a greater chance of collapsing the lung) and the orders were pretty clear.  I convinced them to at least drain the largest pocket (as opposed to just take a sample), which they did.

Since to hit the other pockets, they would have to put in more needles, there was no clear disadvantage to doing the written orders at that time, and then, if there had been an error in the orders going in to do the rest of the drainage. We also thought that it that draining the largest pocket might alleviate most of my shortness of breath. It helped, I was able to sleep last night laying down - instead of propped up- but my breathing is still pretty shallow.

It turns out, after talking with Dr. Connelly, that there was an error in the orders. That the intention had been to drain as much fluid as possible, so I will be going back in on Wednesday or Thursday. On the plus side (depending on how you count these things) that was easily the least painful surgery procedure that I have had done. There was a little stick from one of the numbing shots, but other than that, I did not feel a thing, and even now that the local shot has worn off, I don't feel any pain where they went through. So it is not wrenching to think that I have to go through it again.