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.