Long post - things are getting better.

It has been a rough week. Not to get too much into it, but my white blood cell count is nearly zero, and I developed a fever on top of everything else. The chemo takes it right out of me - I would say that on a good day I am at about 4% of what I could do previously, but these past two weeks I have been lucky to hit .4%. The infection/fever is now under control except for a bit of drippy nose and a raw throat.  To give a little snapshot of how ridiculous my life is right now, I had 2 units of blood and a unit of platelets Monday at the Waldo County Hospital (where I have my out-patient chemotherapy) . Tuesday I was headed to the hospital in Dartmouth to talk with the doctor that will be doing my stem-cell transplant. However, as we drove along, Becky called to let me know that she was worried because I was so pale when I left the house. I was looking at my palms and they were ivory white - the color of piano keys as were my lips. Becky talked to my primary oncologist who recommended that I go ahead and get some blood-work done (where they draw your blood and see if you are low in anything) in Brunswick (where I have my in-patient chemotherapy). So my blood-work came back and I am very low in everything important - red blood cells, platelets, and neutrophils (neutrophils are what fight infections if you don't have any white blood cells (technically lymphocytes, neutrophils and lymphocytes are both types of white blood cells) , which I don't since that is what is cancerous and the whole point of the chemotherapy is to kill those bastards off). So I had another 2 units of blood and 2 units of plasma. 

At Dartmouth, I had a informative discussion with Dr. Meehan, who asked a lot of questions and told me a bit about what might be to come. It all depends on different things, so I won't go into it at this time. But my throat was ragged-raw, and it really hurt to talk, so I was exhausted by the visit. After which we stayed with my Aunt-in-law, Pru. It was great to see her, but after about an hour I crashed for the night. In the morning, on the drive back, my lips and palms again were white, so we had to make an emergency stop in Brunswick for the second time for blood work. I took another 2 units of blood and unit of platelets. So in brief, while en-route from one hospital to another, I had to make an emergency stop at a hospital - in both directions.

I was obviously feeling poorly - I was in pain from my throat. I would say a "8.9" on the pain scale which means that I would have preferred carving "yes" and "no" into my skin with a scalpel and then just sanding the appropriate answer to the question. I tried to explain this to the nurse, who then asked endless questions - did I want ice? No. If I need anything, I will be sure to ask for it. All I want to do is sleep and not talk. Please don't ask me anything else. I am going to give you then next unit of blood, is that ok? Yes, that is why I signed a consent form for you to give me blood and the whole reason I am here. Please don't ask me to talk again - it causes me a lot of pain to talk. Did I want water? did I want some juice? how about apple juice? A blanket? maybe cranberry juice? And on and on and on. If i didn't answer she would sort of tap me on the shoulder and ask louder. Oh god, you are killing me. Just STOP.

So, that was exhausting. Very few things are more tiring than extreme pain on top of extreme fatigue. I slept for a good portion of yesterday, and then with my brother-in-law, Doug's help, and Keith (my father in law), we shlepped most of my tools from the lake cottage to my house, and Doug helped me clear the yard and get ready to build the door for the toolshed. I again slept today, and hope that perhaps tomorrow morning it will be cool, and we can make good progress on the door. It should not take very long since it is a simple project, but I am so much slower at everything these days. 

My throat is much better, and I don't seem to have a fever anymore either. I hope to have a few productive days before I go back into chemo on the 5th of July. I miss seeing all my friends, but until I get a neutrophil count that is closer to the normal range of 150-400 (I forget what the units are) I have to play it safe and limit my visits/visitors. My counts on the last two blood draws have been 4 and 7. Luckily, I have been spending most of my days since I got home sleeping, so the time goes by quickly. 

Home from New Hampshire

Leif and Mom arrived home late yesterday evening after another stop in Brunswick for a blood transfusion and some more platelets. Today is set aside for some heavy-duty catch-up napping, since it's not so easy to sleep in the car. Tapioca pudding made from the very best duck eggs and maple syrup awaits his waking moments.

My brother Doug also arrived for a visit yesterday. We're putting him to work building things!
Posted by Becky

At Dartmouth-Hitchcock today

The aftereffects of the second cycle of chemo were harder on Leif than those from first one; more nausea, fatigue, and very sensitive skin. My mom and dad arrived early last week, and have been a big help taking Leif to his appointments and feeding us dinner. They are staying at their camp (aka "lake house" in Texan) a few minutes away from our house in Brooks.

He has been experiencing a skin reaction to one of his drugs; a very itchy red rash that we've been treating with hydrocortisone, Claritin, and Benedryl. He's been excerising impressive amounts of discipline not scratching it (thus risking cuts that could become infected), even in his sleep. He also experienced petechia in a few places; that results from low platelet count causing blood to seep out of capillaries, making red spots on his skin. He got a blood transfusion last Wednesday.

Leif was able to get out and see some friends over the weekend, always a happy activity. He also installed some light fixtures at the camp. He has been getting some outdoor exercise, taking short walks and tending the plants in his forest garden, while being careful to avoid any contact with the soil and its attendant microbes.

On Monday he woke up with a sore throat, bleeding in his mouth from toothbrushing, and his temperature started going up. So he's now on a course of antibiotics, and also got two units of blood and one of platelets. Tuesday morning he and my mom left for his appointment today to meet the stem cell transplant specialists at Dartmouth-Hitchcock Medical Center, planning to stay with Mom's sister Prue who lives nearby. However, when they left home he was looking quite pale and feeling pretty bad. Concerned that this was not just the effects of his sore throat and so forth, they stopped in at the Maine Center for Cancer Medicine in Brunswick (his oncologist's main office) to get a blood check. He was indeed low on red blood cells and platelets, so he got two more units of blood and two of platelets. Since blood transfusions take quite a bit of time, he and Mom stayed overnight at Leif's parents' and got back on the road this morning. I'm glad they left room in the travel schedule! His throat is still quite sore, but not as bad as it was yesterday.

I don't have the full report from his visit at Dartmouth-Hitchcock yet, but he did say that it went well. I believe they are going to do another blood check there before he heads home. Meanwhile, I have been enjoying spending time with Dad; we're indulging in spicy food without certain people here to object. 

I can't begin to express my gratitude to our family and friends for the many ways you have supported us, from welcoming surprise houseguests to providing words of wisdom, sustaining meals, heart-filling social gatherings, and much more. You all are the best.

Posted by Becky

Home again.

Finally broke out of the hospital, and Becky drove me home last night. It is nice to be back home.

I have been having a real problem with nausea, not the least of which is because the inside of my nose smells bad. I can smell the chemicals from the chemotherapy through my skin, and they are not pleasant. They have a slightly sour, necrotic smell. Bleh. Despite my best efforts, I have been steadily losing weight.

I have a meeting with my primary care physician this afternoon, and I am going to try to get a prescription for medical marijuana. The anti-nausea medication that I am currently on has potential side effects like neurological damage, which makes me hesitant to use it. Pot on the other hand? Its side effect is anti-anxiety and the ability to chill. I can't believe that they don't prescribe pot first.

Becky made me some miso soup last night. After I threw up the food that I had eaten at the hospital, it went down well. There are few things that taste better when you are not feeling well than miso soup. I assume that in a few days, as the chemo drugs wear off, my appetite will return. For now, back to sleep.

Slept for 12 hours.

Slept a lot today. Of course, by sleep, I mean get up every 80 minutes to pee, and to have the nurses wake me every 2 hours to take my vital signs and change my drugs and take blood samples and such. Good thing I am pretty good at napping - but even so. It will nice to back home where I can get 3 hour uninterrupted naps (I still need to pee a lot).

I did get a free moment today, unhooked from my tubes. I went outside and walked around for a while. They have some "nature trails", which wander along the edge of the woods. It was really nice to walk in the woods, get some fresh air and see something further away than 12 feet. It helped a bit physically (I was feeling pretty blah today), but it really helped mentally, and I feel refreshed. Becky brought me in some real food, and that also revitalized me to some extent.

I will be out of here tomorrow around 5pm or 6pm if my numbers look good. Right now they are giving me a "rescue drug" that helps bind up the Methotrexate and get it out of my system, so as soon as it gets all cleared out, I am good to go. It will be nice to be home. I have a CSA farmbox waiting for me. mmm.

Same old, same old.

Still in the hospital. The reaction to the Rituxan put my schedule back a couple days, so instead of being out of here on Friday, I will not be getting out until Monday around noon. Becky brought me in some real food this evening - stir fry vegetables with bean noodles and wakame salad. I have had a bit of nausea, which is a side effect of whatever the heck I am currently on, but real food is still pretty darn good. Other than that I have been sleeping a lot and doing some reading. I have been enjoying the "Mysterious Benedict Society" which was heartily recommended to me by my favorite 9 year old, and was independently sent to me by my wonderful sister-in-law. It is just the right speed for my fatigued, chemical-ridden brain.

I did get unhooked from all my tubes and devices for a short time this afternoon and went for a "run", which consisted of doing the single flight of stairs 4 times (I managed double steps twice). That got my heart rate up and muscles moving which felt really good. Then I did my stretches and got to take a shower. After which I was feeling almost human, but pretty tired. I took a 3 hour nap. Hard to believe that was the highlight of my day, but I will take what I can. I am in good spirits and doing pretty well. I look forward to being back in Brooks next week.

I look like a chinese crested.

I washed my hair the other day, and lost most of it. I think that now, I unfortunately, look less like a rock star and more like a chinese crested gone wrong.

Chinese Crested

Leif 

Chinese Crested

I went ahead and labeled it for clarity, because I know it is pretty confusing as to which one is which. But there is definitely a "separated at birth?" feeling to the pictures.  A couple of friends of mine suggested that I look more like an adelie penguin. I think that I had the Adelie look down before my shower, when I was sporting a true fauxhawk. I will let you guys decide. It is a pretty close call. 

Adelie Penguin

Leif with more hair

Starting 2nd round of chemo.

I am back down in Brunswick at the MidCoast Hospital. My room number is 202. My cell phone does not get a signal here, so you have to call the land line which is 373-6202

Started my 2nd round yesterday. It was a pretty rough day. I am on a "B" schedule that includes rituxan. After the nurses got my IV in (5 trys, because I have beautiful looking, but very deceptive veins), they started me on the rituxan and I soon had a reaction to it - shortness of breath. They flushed it out, and waited for my breath to return and my chills to cease, and then we started again at a lower does. I can not nap while I am taking this drug because I need to keep ice in my mouth to minimize ulcers. The idea is that it targets fast growing cells, so by constricting the blood vessels in the mouth, you minimize the amount of drug that is going to your mouth, which is full of fast growing cells.

So the lower does is going fine and they slowly raise it every half hour it get it up to where it should be. The idea is to hit the cells with a lethal dose, so it has to put in as fast as possible. We got up to 200 drops per minute, and I was doing OK, and then just before we went to the next level, I got hit by "rigors". Rigors are a shaking chills. It occurs because of an immune response and increases the set point for body temperature in the hypothalamus. It is a listed possible side effect to the rituxan. At this point I had been up for 12 hours straight, which in my new life of fatigue was a freaking marathon. The doctor and nurses took pity on me, and we stopped the treatment for the night so that I could sleep.

I have slept soundly since 7pm, and I woke up about an hour ago feeling unusually good. I even when for a little jog (very little.) and had some dinner. I am about to go back to sleep and nap until they start up again at around 7am. I hope today goes better than yesterday. Maybe, like the man in black (from the princess bride), I can build up an immunity to this poison. 

Innards.

I got a chance the other day to pick up pictures of my CT, or CAT scan, which I learned stands for X-ray computed (axial) tomography. I think that "axial" got stuck in there to make a better acronym, but the doctors and technicians at Waldo County Hospital just say CT. Anyway, there were a couple of pictures that showed my spleen clearly enough that I could figure out what was what, so I added some color and text and thought I would let you guys see my innards.

Front 

These were taken the very first day that I was in the hospital, while they were still trying to figure out what it was that I had. Two days later, I started my chemotherapy, and my spleen started shrinking, so these pictures are pretty close to the maximum size that it got. It is still swollen, but my belly has gone 44 inches at its maximum down to 37. For reference, my waist was 34 inches before this all started. I have also lost 34 pounds since May 21st. Some of it was extra fluids causing swelling in my legs, but much of which was my spleen shrinking. I am almost back to the weight that I was at before, but I know that I have lost some muscle in the process.

Left side

I start my 2nd round of chemotherapy tomorrow. I have two different treatments, an "A" treatment and a "B" treatment that will alternate, so this is the first time I will have the B treatment. The A treatment is 5 to 6 days, and the B treatment is 3 to 4 days. My understanding is that the extra day depends on how my blood work looks at the end of the chemotherapy and whether they need to give me anything to counter the effects of the chemo drugs. I did not need it last time, and hopefully I will not need it this time either.

I will let you know what my hospital room and phone number will be. My cell phone does not get reception there, so I will not be answering my cell phone until Sunday.

Another milestone.

Went with some friends and saw Prometheus last night in 3D. I won't give any spoilers, and will just say that despite some huge, ragged, and mostly unnecessary holes in the plot, it was a lot of fun. It is worth seeing on the big screen. I am not sure that the 3D added a lot, but it did not intrude either.

So I got home pretty late, after what was a long day for me. I had planned to putter at the camp, but I ended up just napping and taking it easy. It was a gorgeous day, and I did get out for a little walk.

In other news, it looks like I did not get my fauxhawk a moment too soon. My hair has started to fall out. I  noticed last night when I took a shower, and today I have been shedding hair on my keyboard. It is individual hairs - not clumps yet, but it has gotten pretty constant. I knew that this would happen, but still it is disturbing on a visceral level. Also, it itches, which makes sense, but I had not thought about that aspect. Ah well, so it goes. We will see if I still have hair when I get out of my next phase of inpatient treatment, which starts this coming Wednesday. I suspect not.

Supper Club

Labs were good yesterday. My hemoglobin count actually increased and my platelet count is low, but within what they are looking for, so I did not have to have another transfusion. I had planned to do some puttering, but instead I slept for most of the afternoon.

I did have the energy to go to Supper Club, which is a weekly potluck held by some awesome people. I was really looking forward to going, as I had not been able to make it since my diagnosis. The theme this week was "food you love" and there was a ton of great food. Sarah made homemade mac and cheese, which I am pretty sure is one of the healing foods of my people. I was still pretty full this morning. The thing that really makes Supper Club though, are the people. After giving them a little update on my condition, we talked about all sorts of things. So nice to talk about something else for a change. :) It was great to hang out with them again. I hope that I am able to make it back in a few weeks. 

Pictures of the fauxhawk.

Becky cut my hair last night. This morning she spent some time staring at me over the breakfast table, clearly thinking "Who is this guy?" It has been quite a while since I was clean shaven, never mind the hawk.

Of course when I look into the mirror, it is all the same to me, since I have prosopagnosia. Anyway, let me know what you all think. I hope you like it since this is one time when "it will grow back" is going to take a while. :)

Here are a couple of pics.

Got some stuff done out at my in-laws camp today. Mostly moving the furniture back to where it belongs and cleaning up the last of the construction debris. Scott and Matt came out and helped me move the heavy stuff as well as finish up a few of the last construction details. We only put in about 4 hours, but it pretty much wiped me out. Slept for most of the afternoon. 

I went ahead and shaved off my beard and mustache and Becky got out the clippers and cut my hair, so now I have a fauxhawk. I took some before and after pictures, and will try to get them posted tomorrow. I am going to hold off on the dye for a bit longer. Usually with a haircut you can always say that if you don't like it, it will just grow back, but I don't have that option open. :) At least not for the next year or so. 

Didn't seem like I did much today, but I am wiped out. Good night all.

I had a really good day yesterday. I had to have lab work done in the morning, but I still had enough red blood cells and platelets from the transfusion so that I was good to go. Just a quick thanks to the anonymous blood donors, you had some A+ blood. (A little pun there, since that is my blood type.) 

Since I got out of the hospital in a record 2 hrs, I still had some energy and stopped by the Belfast Coop, where a number of my friends were still sitting around, on this lazy, rainy day, playing a game of spades. I was able to hang out and join in for a game. My partner and I won. I have not lost a game since I got my diagnosis. Perhaps it is a little bit of karmic offset luck. I am pretty sure they are not LETTING me win. That would be pretty lame. 

Afterwards, I ran a few little errands, got home and slept for about three hours. Then my friend Liza, who is a chef, came over with some unbelievably delicious indian leftovers. Not only do I have amazing friends, almost all of them are foodies. I have been eating well. Good thing too, since people often lose a lot of weight during this chemo - about 30 pounds on average. I need to stock up a bit before I have a hard time eating. The issue is not loss of apetite - I can power through that. :) But the chemotherapy kills off fast growing cells, and that include your hair and the cells in your mouth, so one tends to get lesions and ulcers in there. It is hard to enjoy food when you have no apetite AND your mouth has sores. I will probably end up sucking a lot of my food through a straw. Any surprisingly good smoothy, soup, or other soft food recipes that I ought to know about? Send them my way.

I asked the nurse yesterday when I could expect to start loosing my hair. She said that it will start coming out in about 2 weeks, and that after it starts falling out, it will go pretty fast - in a week or two. I have been thinking that I might as well have some fun with it, and get a mohawk in the meantime. Since it is all coming out in the next few weeks, why the heck not? My young friend up the road wants to dye it. We are thinking turquoise, but I am open to suggestions. I am standing firm that there will not be any glitter involved though.

So, my blood transfusion went well. A friend came by and hung out with me for a few hours, which was lovely. The transfusion really helped my color (I was looking a bit pale), and I feel better, and my balance is improved, so that was all good.

I am a little surprised by how much time I spend in the hospital now. I have two appointments a week, and they take about 3 hours each of my day. Additionally, I am likely need a blood transfusion every other week, and that is about 6 hours out of my day. Then I have the inpatient therapy, which is 4-6 days every three weeks (depending on whether it is the "A" schedule or the "B" schedule. I had no idea what to expect, so I had no preconceived notions of how it would all go. I recognize that this is essentially my job for the next year or two (if all goes well). At least I have time when I am NOT in the hospital. :)

My energy level seems to be picking up slightly. I have an appointment with the doctor tomorrow, and one of the things that we will be going over are some recommendations for working out. I have been just doing walks, stretching (not really yoga), and a little bit of tai chi. A good friend of mine is going to start teaching me some more, so that will be fun.

It is overcast rainy day today. A perfect day to nap and relax. I am still sleeping about 12 -14 hours a day. I bit of an increase from my 4 hour schedule that I did all last year. It makes the days very short. After the 4 hours that it takes me to eat, that is most of my day. Despite the fact that I do not have much of an appetite, food is a major highlight of my day. Praise the cook! Cooks, really, as a number of my friends have brought over wonderfully tasty treats.

It is all very strange. I am living a completely different life than I would have imagined just last month. It is not bad, it just has weirdly different priorities, foci, and routines. I think that I am rolling well with it, staying relaxed and living one day at a time - not worrying about what is next, or how long this will all take, but it is a little bizarre. Other than eating and sleeping, my time consists of having a call with a friend, reading a bit, surfing reddit, and do a little writing or sketching. I hope that next week I will have the energy to hit some low-key projects around the house - mostly wiring. I am not very good at just hanging out and relaxing, but the fatigue helps me from overexerting myself. I guess that is what it is for. :)

Yesterday I had an outpatient appointment at Waldo County hospital for a blood draw and 2ml of vincristine. I am going in today for 2 units of blood, as my hemoglobin count is low. My platelets look good and my white blood cell count is lower (which is good, since that is the part that has the cancer). It does mean that my immune system is going to be more and more compromised as the treatments go on, so I need to be careful of infection. We are taking good precautions.

I also had a good time yesterday at Scott's birthday party - a low-key affair with some of my best friends. Great food, and it was so nice to see everyone. I was pretty wiped out by the end, what with also going in for the appointment yesterday - it was a big day for me. Becky drove home while I napped, and I slept very well last night and feel quite good this morning, so it was totally worth it.

My energy seems to be climbing for the first time since I went in on May 21st. I am still sleeping most of the day, but when I get up, I do not feel completely wiped out, and am able to do up some dishes, read a bit, and go for a little walk. My doctor recommends that I try to exercise. I am currently looking for an exercise regime that is doable, but will not push me too hard. I tend to push myself in that regard, and I am not yet sure what is safe. I hope that I will be able to do some easy kayaking once the swelling of my spleen goes down.

For those of you that care, my current daily pills are:
300mg Allopurinol
40mg Famotidine
40mg Dexamethasone
Optional are
50mg Tramadol. I usually take one before bedtime.
4mg Ondansetron. I had been taking one in the morning and one in the evening, but yesterday evening and this morning I did not even have any queasiness and I my appetite seems to be returning, so I did not take it today.

Got to head out for my blood. It is about a 5 hour process, so I have a good book.

Leif