My first tattoo.

Crazy day. Got drunk and got a tattoo. Except without the getting drunk part. I had my first dose of radiation for the lymph nodes, and because of its location, they couldn't just draw on me with a sharpie as they did last time; they are going after a smaller target, with more things in the way, so I have three new tattoos. They are just little black dots, pretty hard to notice. I have lost my place in the ranks of people with un-inked skin, but I don't think that I have yet fallen to autohypergraphia (the compulsion to mark yourself).

The radiation went well. Side effects are expected to look like a sun-burn and itch, which is a little bit rough, since those are one of the key side effects that I am supposed to check for to make sure I am not having an outbreak of donor vs host disease. Yesterday and this morning - before getting any radiation - I have had a bit of itching on my torso, and I can not tell if it is red from the scratching, or whether this is the start of some mild donor vs. host. I can not stop scratching completely, because I scratch in my sleep.

The other side effect that is expected from the radiation is irritation of my esophagus. I may have trouble swallowing crunchy things for a while. These both seem pretty mild as far as side effects go. Especially if this is enough to throw the lymphoma back into remission. Go Donor cells!

I am looking forward to this weekend. We are headed back up to Brooks to stay at the camp. It is so relaxing up there. Another good thing is that I will not be getting my port accessed, and it is getting pretty sore. I think that it has been accessed 10 times in the last 10 days. The skin is getting sore from the adhesive covers for the needle being constantly ripped off it, as well as the skin around the port itself, from being stuck so often. It will be nice to have a two day break from that. Additionally, I am hoping to see some of my friends.

The people at the radiation clinic were really nice, and answered all my questions, both before and after the treatment. It was a good experience. I hope this works as expected.

Leif

Bad Dr, Good Dr.

My primary, local, oncologist is on vacation this week. Sort of a rough time for me for her to be gone, as my lymphoma relapse has been progressing pretty quickly. I did have a meeting with her scheduled today, so it was fielded by another doctor in her office. This is not a doctor with whom I have good repport, and this visit did not go very well either. He did let me know that the biopsy came back showing lymphoma, which everyone has been expecting. The problem was working with him to map out a plan of treatment. I had been told that the earliest I could get in for radiation would not be until July 27th, and that would be for the pre-treatment consultation, which he confirmed. Dr. Meehan had recommended that I go back on a mega-dose of Prednison, which is a steroid; I just finished tapering off of it last week, from my earlier bout of graft vs host disease of the liver. He said that should start having an effect within a few days.

My concern was, what if it doesn't? What is plan B? He said there was no plan B, that I would go on the prednison and then in a couple of weeks, get radiation. I maintained that I wanted to work out a plan B, because my lymphoma was progressing rapidly. Last week I had a little trouble breathing if I was laying down, but this week, it has progressed to the point where I have to put enough pillows under me such that I am at a 30° angle or so, in order to breath. In two weeks, it is conceivable that I will have trouble breathing if I am at a 90° angle. Then what? I will be dead. Before they start the actual radiation.

His solution? Take the prednison and see if it helps. If it doesn't help, we can stick a tube down your throat. I tried to explain that I didn't think that a tube would help, because it is my understanding that I am not having trouble breathing from constriction of the throat, but because the lymphoma is pressing down on the Vagus nerve, which (among other things) controls the diaphragm. He told me "Nothing more can be done." Which is clearly not true. Even if he believes that I am worried for nothing because the prednison will take care of it, there seems like there are better ways to help relieve my stress. As I said, I have poor rapport with this man.

So, after I got out of there, my plan was going to be to call Kate, one of the nurses in Dr. Meehan's office, and I knew that she would make sure that I was taken care of, even if I had to check into the emergency room at DHMC in order to get radiation sooner. I did not call her immediately, however, as I had a 1:30 appointment with Dr. Godwin, the radiologist, and I would know for sure what my radiation schedule would be.

There is the initial consultation, where you meet the doctor, and come up with a plan for your case. This does not even happen at the treatment center, because in Maine, there are a number of scattered treatment centers. Instead, this is at her office. The date that I had for the 27th is for the prep at the treatment center. They can not do the treatment right away, because they have to make sort of a cast of your body to hold you immobile while doing the treatment, and they have to give you a CT scan, and then tattoo your body so that they can line up your body with the area that they are treating. Before your actual treatment, there are quite a few things to check, to make sure that you are getting the smallest amount of radiation that will provide a positive treatment.

So Dr. Godin turned out to be a warm, empathetic person, who understood that while emergency radiation is almost an oxymoron, this was, in fact, an emergency. She also told me that part of my problems breathing is that my most recent CT scan - yesterday - showed that I have fluid in one of my lungs. I am not sure why I was not told that at the oncologist's. She told be to be at the clinic tomorrow morning at 8:00am, and we would do the prep work, and that she would run all the numbers and figure out the specifics of my treatment, and they would do the first treatment at 10:00am that same day. She wants to do my 2nd treatment on Friday. There will be follow-up visits next week as well. (For those of you that care, Doug, my initial two treatments will be around 3-4 grays.)

I literally feel better already. Not a lot better, but being taken seriously, and immediate movement on my treatment has allayed many of my fears. My muscles have relaxed a bit, which helps. Along with the prednison, I should start seeing a lot of improvement by the middle of next week. My regular oncologist will be back next week as well, so I think that will help keep things moving.

Leif

Results from MRI

Spent the day in the hospital today trying to look for a blood clot which may or may not be in my lungs. I have had some shortness of breath, and while it is probably NOT a blood clot, that is the first thing to rule out. I was supposed to have a CT scan with contrast, but because I had contrast yesterday for the MRI, the preliminary blood work showed that my kidneys are already working too hard.

The CT scan was canceled, and instead I got a shot to help protect my kidneys. Tomorrow, I am going in for a different type of scan. Amazingly, it is not one that I have had before. It is a scintigraphy scan, or affectionately, the gamma camera. It will also be checking on the slightly swollen lymph nodes that showed up on my PET scan that I had about 2 months ago.

Good news, the MRI came back negative. I do not appear to have lymphoma in the blood vessels around the brain. I try not to stress out about these sorts of things, but that is still a relief. It is not usually something that one gets better from. We still don't know what is going on with the swollen lymph node on my right superclavical area, or the less swollen one on the other side. Those are still concerns, but I have a reasonable chance even if they are signs of relapse. Not good chances, mind you, but I haven't had good chances yet, so I will take what I can. :)

Tomorrow, after the scintigraphy scan, we will be headed for my checkup at DHMC. We drive out on Wednesday and my appointments are Thursday morning. I am packing with the possibility that they may keep me for a while. It is likely that they are going to want to take a biopsy of the lymph node once they see it. It is not just a little needle draw either -  apparently they slice off a chunk. On the up side, I will get to see all the great night nurses that I have not seen since I was discharged in February.

Leif

Trepidation 6/10 checkup

I also have a checkup at DHMC this week, but this was a follow-up on a two-part problem. I have an enlarged lymph node on my neck, as it comes into my right shoulder. I also have been having some problem with headaches and nausea. The nausea has not been too severe, but it will suddenly rise quickly, and I have projectile vomiting. So far, once I vomit, both the nausea and the headache ease off considerably, which is better than it could be. I had a checkup last week, and since then the lymph node has grown considerably.

I had an MRI today, and they are running a test on a spinal tap to check to see if this means a return of the lymphoma. There is the possibility that the lymphoma has taken up in the layer of blood vessels between my skull and my brain. My symptoms do not bode well, but we will see what the test show.  The other likely candidate - an infection - has pretty much been ruled out by the fact that I have no fever, and an earlier spinal tap showed no evidence. The headaches and nausea might be explained by my medications, but that does not account for the enlarged lymph node. It is growing faster than one would expect for a relapse, but then, I have a crazy, aggressive form of lymphoma. I am fairly concerned.

On a good note, I got up to Belfast this weekend, and while I had quite a bit of fatigue, I managed to get together with some friends for a game of cards, and later went to John's house to watch "The Hobbit" with a couple of friends. John pulled out all the stops, making a fantastic popcorn from his home grown corn, a excellent meal, and Skye provided some John's ice cream (different John). Luckily, I was mostly able to partake, although I could not have any of the beer. As John is quite the connoisseur  this was more of a hardship than it would otherwise have been. It was a great evening, and a wonderful weekend. So good to see some of my friends.

Leif

Beautiful spring days.

Yesterday and today have been just beautiful. Classic late spring/early summer days. I have not had a chance to get out much, as I am quite sore from the spinal tap. It has left me with an ache in my lower back that I am treating gingerly. One of my favorite nurses tells me that I should spend the time lying down, and mostly I am taking her advice, but I can not draft lying down, so I keep sitting up to do a little bit of design on a couple of small projects that have taken my interest. I did sleep something like 16 hours yesterday, so I figure that is in keeping with the spirit of her instructions.

One of the things that came out of the meeting with Dr. Meehan last week was that he increased the rate that I am tapering my prednisone and cell-cept. At this rate, I will be off both drugs by the 12th. That is a huge reduction in the number of pills that I have to take every day. I started off with 10 cell-cept pills a day - 5 in the morning and 5 in the evening. Now I am down to 3 total. Such is the excitement in my life.

My headache and nausea seem to be gone. Yesterday, I had to be careful with the headache, any quick movement of my head would create the feeling that a full-blown headache was imminent, but it never quite got to that. I was sent home with some dilaudid, which is a serious pain killer - much stronger than morphine. I took one of those tablets yesterday, and then felt that I could switch to oxycodone, which is much more mild.

It still stuns me that these drugs have street value. They are horrible drugs. Who takes these for fun? I just can not imagine. Perhaps people that are in serious pain, but without insurance? I have no idea.

Today, I am planning on mostly resting, lying down. Becky, who had a spinal tap last month said that it took a few days before the ache to go away. The pain is not serious, but the location makes it feel more critical than a bone-marrow biopsy. I have had lower back pain before, and my cure for it has always to be good about my stretching, but I don't think that is the right strategy in this case.

Tomorrow, I have a meeting with Dr. Benton. It would be Dr. Connelly, but she is on vacation this week. It is just the usual blood draws, and I am also going to get some IGG, which is an antibody booster. I have had it a number of times, and I tend to have no problem with it. Afterwards, I am getting together with one of my favorite nurses from Midcoast to have lunch at the local indian place. The last time she saw me, I was looking pretty wan, and frankly, my odds were not good at that time. So I think that she will be pleased to see that I am looking hale and hearty.

One of the few good things to have come out of this past year are the number of really wonderful people that I have met. Mostly nurses, as they spent the most time with me, but there are a number of doctors as well that I am quite fond of. I figure that over the past year I have interacted with well over 200 nurses and 80 doctors. I had a hard time keeping track of everyone for a while. Especially at Dartmouth Hitchcock, where you almost never see just an individual doctor, but an entire team of 3 to 6 doctors that rotate out every 2 weeks. It got confusing, what with that many people, my prosopagnosia, and the fact that I was drugged out of my gourd.

Anyway, I hope that you all enjoy this gorgeous day.

Leif

Emergency room.

Rough day. I think this is one of the only times that I asked (as opposed to Becky cajoling me) to go to the hospital. A splitting headache woke me up and nausea got me out of bed. Immediately threw up, which usually helps - not just the nausea, but oddly, this particular type of headache. Today, though, it did not help at all.

I have been getting migraines over the last 4 months or so. Blazing pain behind my right eye - it feels reminiscent of having a pneumatic hammer drive a nail into the side of my head between my right ear and my eye. This headache was different. It is similar to a pounding hangover without the pounding part. Just one continuous roar of pain encompassing my entire head. It always comes with vomiting  This is the 4th time that I have had this. All of them have been after my bone marrow transplant. The first one was by far the worst. A solid 10 on the pain scale. Luckily, I was still in the hospital, where they were giving me as much pain killer as they felt like was safe, and I was still intermittently passing out from the pain. I also vomited so hard that I pulled a muscle in my jaw and injured a nerve. My bottom lip and part of the right side of my face were numb for over 2 months.

The other two instances were much less dramatic. They were around 6 on the pain scale, and I got through them at home with large doses of morphine, and the nausea mostly went away after I hurled.

Today I couldn't get my pain or nausea under control, so off to the hospital we went. Incredibly, I had a new experience at the hospital. Not the CAT scan, I have had dozens of those, but I also had the joy of a spinal tap. I thought it would be much worse than it was. However, compared to a bone-marrow biopsy, it was cakewalk. We are back now, and I am not currently in pain, but I feel very fragile and woozy. It was not my usually migraine. It was a different type of pain in a different part of my head, but it was monstrous. 9.5 on the pain scale at least. While I am not in pain currently, it feels like the pain is only momentarily pinned under a wall of fentynol.

The nausea seems to be under control though. I just had a small bowl of yogurt, and I am going to try to take my pills. Then have a little more dinner (I haven't eaten all day, of course, and my body is plowing through about 3,000 calories a day because it is working so hard on a cellular level).

None of my doctors have any idea what might be causing it. I hope that it is not going to be a chronic problem, but will vanish once I am off my medications.

I have a good book to curl up with - H.G.Well's "The Time Machine". I plan on reading for a bit and then going to sleep. Tomorrow morning has almost got to be better than this morning was. I hope everyone else's "back from a 3 day weekend monday equivalent" went better than mine.

Evil plot twist update

Posted by Becky

I was taking some time to digest the news I got earlier this week, but I just read Leif's last post, and see that it could have people worried about me. So I want to reassure everybody that I'm fine, and that I'm going to be fine. I do, however, have Multiple Sclerosis. It started causing numbness and tingling in my left hand sometime in March. For a while the numbness went all the way to my left foot, but everything's back to normal except my arm and hand. My hand has improved quite a bit, too; I can type with it again, although I'm still better off handwriting right-handed. When I bend my head forward, I can feel an electrical buzz down my back, the backs of my knees, and into the soles of my feet. Woo! That's the most disturbing symptom. My hand feels like I slept on it wrong, except that the feeling doesn't go away.

I have a new neurologist here in Brunswick, John Taylor, who was recommended by the neurologist I saw at Dartmouth-Hitchcock. He's starting me on Vitamin D and B-complex vitamins right away. I'll start taking medication to reduce the likelihood of relapses in a couple of weeks, after a bunch more test results come back. This drug, called Tecfidera (dimethyl fumarate), was just approved by the FDA in late March 2013. So I'll be kind of a pioneer taking this stuff for MS outside of clinical trials. Its advantage is that the side effects are minor. While MS is a new indication, people in Germany have been taking it for psoriasis for a while without long-term ill effects.

MS is idiosyncratic in how it progresses, so nobody can say how I will be doing a year or ten or twenty from now. I'll do my best to become informed about MS; I still don't know that much about it at the moment, other than that getting treated sooner rather than later is really helpful, and that it doesn't generally kill you. I'll do what I can to take good care of myself and not let this get the better of me.

1 year since being admitted to the hospital.

Realized that today is the "anniversary" of being admitted to the hospital. It has been a full year in this battle with lymphoma. I figure I have spent something like 6050 (out of 8544) hours in the hospital this year. For people that don't do math, that is about 71% of the year. I am glad that we have good insurance.

I learned and did a lot of new things this past year. I rode in an ambulance for the first time; I learned that my community loves me; I saw my insides via CAT, PET, and MRI scans; I learned that if you don't have enough platelets, blood can just leak out of your skin; I learned that the chef at Midcoast Hospital was the head chef at the Muddy Rudder, and if you ask for chef's choice, he will cook you amazingly good food. I learned a lot about biology and pharmaceuticals. I had my first surgeries. I gained a lot of sympathy for other people who have to go through any hospital stay. I gained a number of new friends. I deeply appreciate the kindness and skill of the 220+ nurses and the 80+ doctors who helped me through this. I got to know my mom's cousin and his wife, who are great people. I deeply appreciate all the strangers that donate blood and platelets. At one point I was going through 3 bags of blood and 2 bags of platelets a day. I learned what "10" on the hospital pain scale represents. I admire my amazing wife even more than I did going into this.

Despite the good stuff (and there was some), I would not recommend this to a friend. If you are considering lymphoma, there are easier ways to get on disability.

So, a hard year for me, but I am definitely on my way up. I see good gains in my strength and bloodwork numbers every week. I have more energy and less pain and fatigue. Nausea has become very rare, and even when I have some, it is pretty mild. I have started putting on a little muscle even. My brain is coming back on line. I am enjoying my daily walks around the island. Watching the sea is so restful and calming just in of itself. So things are looking pretty good.

But wait! In an evil plot twist, Becky has been diagnosed with a serious health problem. We are hoping that it is stress related, and she will have spontaneous remission. She certainly has been under incredible stress this past year. I know that people are probably curious about her diagnosis, but not everyone is as forward with their health issues as I am. She tends to be a much more private person than I am, so I hope that you will respect her privacy about it until she decides to let people know or not.

Anyway, this means that Becky and I still have quite a haul in front of us. I still have 4-8 months to go before I am off my immune suppressants and can start interacting with people again, and I am still in no shape to care for another person. I am not yet quite capable of taking care of myself. We have no idea about how Becky's health issues may progress. Living here with my mom has helped take some of that stress off, I think. We are also re-united with our stinky dog, so that is nice. She is stinky, but sweet, and somehow having her around is soothing. Once we get back up to Belfast, we are going to have to rely on our amazing community to help us out again. A lot depends on how well I am doing and whether I continue to thread the gauntlet without getting any infections or viruses.

2012 was not my favorite year. I am not sure that 2013 is looking all that much better. Perhaps we can count the year from May 21st to May 21st, and it will all be easier from here.

Day 98, It has been quite a week.

Last Wednesday, I had my PET scan. The results showed that by spleen is still getting smaller, but I do have some other lymph nodes that are enlarged, so I am not completely clear of the lymphoma at this point. The doctors, though, are pleased with my progress. With the type of transplant that I had, the last of the lymphoma is taken out by the new white blood cells. They have not quite been up to the job, since I am on heavy immune suppressants. It is a balancing act right now between training the new white blood cells not to attack my organs, and allowing them to attack the remaining lymphoma. The doctors did not expect me to be clear at this point, but feel that I am doing well.

On Thursday, I had a bone-marrow biopsy, so that we can get a very good idea of the state of the chimerism, the amount of lymphoma, and the density of the new cells production. I was supposed to have it under sedation, and they gave me the same drugs as I got last time. Last time, it worked like a dream. I did not feel a thing and all went smoothly. This time, I did not feel the effects of the drugs at all. As far as I can tell, I did not receive anything (I know that is not true, because I saw the bags of drugs empty into my bloodstream), but they had NO effect. I felt everything, I did not have any grogginess afterwards. It was pretty bad. This is the second operation that I have had were the anestesia did not kick in. I know that I tend to be resistant to many anestesia drugs (I understand that it is relatively common in Aspies). But still horrible. We have had a couple of conversations now about it and I think that the problem will be taken care of in the future. Currently, there is no STOP and CHECK procedure to make sure your patient is actually under before proceeding. This is not actually as stupid as it sounds, since almost no one has a problem with anestesia, but it can take a little while to kick in, so they start in on the prep. Still, I will not be having any more surgeries with out a STOP and CHECK at that point, along with a plan B on the anesthetic.

We won't get the results from the biopsy for 2 or 3 weeks. They have to actually check the DNA of the cells to see which ones are the donor's cells and which ones are my original cells. It is fussy, time-consuming work. It is sort of amazing that they can even do it.

On Friday I finished packing up the apartment. Becky currently has a medical problem with her arm and neck, so it is all she can do to work for her job, and then she is wiped out. So I packed and labeled everything. Packed the car. And then on Saturday, my cousin Joe came with his truck and he helped load that up and move us to my parent's place in Harpswell, ME. Where we unpacked the truck.

I pushed myself to get the move done. Unloaded everything in the livingroom and then went to sleep. I have slept most of Sunday and Monday. I will probably be doing a little better today. Sunday and Monday tend to me low energy days for me anyway, because my medication changes on Friday of every week, and it takes a while for my body to adjust.

Still, so good to be back in Maine. I still need to go to DHMC on the 23rd, and probably every other week for a while, but it is only 3 hrs, and worth the drive to be back. I am especially glad, since with my mom, and her friends, we have a little more support, and I have an extra care-giver. Becky needs several weeks just to rest and heal from her condition, and it is a relief to her that she can leave the house and someone will be around in case of emergency for me.

On Thursday, I have a meeting with Dr. Connelly, in Brunswick. I was looking pretty wane last time she saw me, so I think she will be pleased with how I am doing. Dr. Meehan has been sending her weekly reports, as well as phone-calls, so she is up-to-date. If I have the energy, I am going to try to go to North Ward and see all the wonderful nurses who helped keep me alive last august. Ah, good times.

Leif

Day 85, Thursday checkup notes

Hey, I am on a roll. Good news again. My white blood cell count is up by another 3rd and my red blood cells and platelets are approaching normal. I have about 11/15ths of the blood that I should eventually have. It is nice that I can no longer hear my pulse in my ears. When your blood is low, you can constantly hear each pulse swooshing.

I have quite the battery of test set up for next week, since the 100 day critical period is nearly done. I have a PET scan and a bone marrow biopsy. As well as blood work, doctor meetings, and IVIG (immuno-globulan), which helps boost my ability to make anti-bodies. They are going to anesthetize me for the bone-marrow again, so I am not very stressed about that.

This weekend, we have started packing, as we are moving back to Maine on the 11th. Both Becky and I are really looking forward to it. I am sure that our little dog will be glad to see us again. She has probably given up hoping by now. It has been more than 6th months since we moved to VT. I am looking forward to walks along the ocean, and being close enough to see my friends up in Belfast once in a while.

Becky has been having problems with her neck for the last month or so, and it has caused some paralysis and loss of feeling in her left hand (and she is left handed). She finally was able to see a neurologist and had a couple of MRIs this week. We were hoping that it was a pinched nerve, but it turns out to be damage to her myelin sheath around her spinal cord. The cause is not know and it is also unknown whether it will repair itself, or if it is permanent. The only good thing that the doctor was able to say is that if it does repair itself, it is likely to be a one-time fluke and not something that she has to worry about re-occurring. We wil know more when we get the results from the 2nd MRI. We both hope that it is stress related, and once we get back to Maine, and my mom can help a little with my care-giving, that it will heal up and go away.