Not a fan of Cytarabine.

Sunday was a good day. I had a couple visitors and I had pretty much recovered from the Rituxin. Sunday evening I got started on the Cytarabine. This is a nausea-inducing drug. It theoretically has some other purpose, but I am not even sure what. I have it every 12 hours for 48 hours. That night I threw up my Luecovorin, which is a rescue drug. It is to offset the Methotrexate, which I was got on Sunday. So the doctors were called, as I should not take a double dose and no-one knew how much I threw up. It was finally decieded to just give me the entire does again, but this time in the IV. It was actually a little funny how it happened. I was feeling distinctly unwell, and had called in the nurse, but I could not decide if I was in pain, or nauseated. I decided both, but before the nurse got back with the pills, I had lost it.

I had several cocktails of anti-nausea medicine during the night, and the next day.  I only got out of bed on Monday to pee. I was a sad puppy. The pain killer escalated until I was given morphine. Finally I was able to relax and start feeling better.  One of my doctors came in on Tuesday morning and admonished me to get out of bed and move around a little. It was good advice now that my nausea was mostly under control. I felt better today, although still tired and queazy.

So, that is why no-one heard anything from me for the last day and a half. I am off all the chemo drugs right now, and just taking the recue drug Luecovorin. When my bloodwork shows that it has done its thing and countered the Methotrexate, I get to go home. Probably sometime tomorrow morning.

Long night, great day.

Got to the hospital on Friday, and first out of the box was my Rituxin. I again had rigors (chills and shakes/ muscle spasms), and although they were bad, they were not as bad as the first time because I had the wherewithal to hit the clamp on my tubing to stop the Rituxin just as I entered rigors. It took me another few minutes to manage to hit the nurse call button. The nurse was quick to follow protocol, and within about 45 minutes, I had come down from the reaction. They slowed the drip even more, and I had continuous low-grade fever and muscle cramps for the rest of the session. Because they slowed down the drip the Rituxin, which usually takes 4 hrs, took 12 hours. The rest of the night was wracking cough and low-grade fever. Ugh. The Rituxin stopped at 4am, and by 5 I was feeling a lot better.

The bad thing about the reaction to the Rituxin (besides the actual unpleasantness) is that the severity of the reaction often correlates strongly to the amount of cancerous material, which means that there is a good chance that my spleen is still harboring quite a bit of the baddies. We will find out for sure on Friday, when I go in for a PET scan specifically to check. There was some hope that because my other blood work was looking good, my spleen might simply be still large because it was amazingly huge and spleens take a while to shrink. If that is the case then I would just have one more round before I go to Dartmouth for my stem cell transplants. However, if it is harboring cancerous material, then I will have at least 3 more rounds, if not 5. Que sera, sera.

The day was really nice though, I had an hour unhooked from the tubes, and managed to get in a hot shower and a nice although limited walk. I had a visit with my friend Steve, who lives in Brunswick. He brought me some seafood chowder which was amazingly delicious, and we talked about tricks for setting up a woodshop. My brother and sister-in-law and their two children showed up, along with my mom. It was nice to see them. And my friend Carolyn, who is going through her own chemotherapy was able to make it up for a while, as well as bring me custard and breakfast sandwiches. I don't know how she manages to do it. She is really amazing. It was great to see everyone, and I had pretty good energy all day. 

Round 4

Back down in Midcoast for my fourth round of chemo. First things first - my room number is 227 and my room phone number is 373-6227. Again, I don't have cell phone service, so I can not call out, but I enjoy receiving phone calls. Give a call anytime between about 9am and 8pm. You don't have to worry about waking me up, I look forward to breaking up my endless naps with some human interaction. 

I have not posted much lately, as I have been feeling unusually well. Over the last few days I have had less fatigue, and more energy than I have had since I started treatment. I would say that I have been operating at about 10% (up from about 4% on a good day). So that feels pretty good to me. I have been puttering around the house, and have gotten the front door painted, the lock installed and put in a front porch light. It has felt pretty good to accomplish something productive. 

This schedule is supposed to be the short schedule, so I might be out of here on Tuesday, and on Friday I have a PET scan to take a look at my spleen. All my future treatment depends on how my spleen looks. It is still shrinking well, but it is still pretty big, so the doctors are really at a loss to make any prediction about what happens next until we see those results.

I will post more later after I get settled in.

Leif

Nice to be home.

It is nice to be back home. I am still recovering from the chemo, so I have been sleeping a lot. This part is actually the most fatiguing. I have had some nausea, but nothing like the previous round. I think that not even having any of that cisco hospital food in my room helped a lot. There is a distinct smell to cisco-style food.

I have had to hit my stronger pain and nausea meds over the past two days, but they are taking care of it, and I actually feel ... well, pretty good, all things considering. I wonder if I am simply getting used to feeling a little crappy, and that it has become the new normal. Whatever works, I guess. 

My last blood work came back well, so I have red blood cells, white blood cells and platelets, all at the same time for a change. This can change day by day, but for right now, it is as safe to visit me as it gets. I tend to have a harder time in the morning, but by about 1 or 2pm, I am up and about, and trying to putter on some minor project. 

Here is the color that I am going for.
Just a little darker than puce.

My project today was: To get paint for front door. I am trying to get a particular color mixed, getting all ahtsy about it. I did not quite get there today, but I got a color that is pretty close. I think that if I add a bit of red to it tomorrow, I will have the color that I am looking for. Funnily enough, the color has a name - dark puce, but trying to find it on a paint chip has been impossible. Puce in french means flea, and apparently many people do not think that it is an appealing color. Go figure. It is exactly the color of the unoxygenated blood when I get a transfusion.  I am planning to use it on my front door and on some of my outbuildings. Door first though. It is time that I got that painted, and I need to install the lock anyway, so it is a good little puttery project for the weekend. 

Good food is pulling me through.

Day 4 of 6 for the chemo. I am currently on a drug called Doxorubicin, which I will take for the next 48 hours. It is not too bad. It creates some muscle cramping and some nausea and of course fatigue, but mostly the side effect is a general malaise. I just feel a little bit crappy - much like when you have the flu. So when I don't have visitors, I nap a lot. It makes the time go by faster.

I have had quite a few visitors, which has been really nice. I am pretty social, and having people in, brightens my day. My friend Linda came up the other day, with a whole cart of good food. My brother brought me some mac and cheese. Cathy and Steve stopped by for a while and brought me in a quiche - which was really great. Now I will have quiche for breakfasts, and I will not be eating any hospital food at all. The dietician here has given up on me at this point, and has not bothered to pick up the last menu she handed out. Erica was down in this area for work today, and was able to stop by and dropped off some veggie stirfry, which I am looking forward to for dinner. I have almost completely taken over the fridge that is available for patients. I have lentil soup, quinoa salad, kale with walnuts, potato salad, carrot soup, and several other side dishes. Plus the freezer is full, and I have barely gotten into the frozen food, what with more fresh food coming in than I can eat. I can not thank you all enough. Having delicious, real food has made my stay so much better. I really look forward to eating lunch and dinner. That and my daily walk are the highlights of my day.

Day 2 in the hospital. Holding up well.

I had my rituxin the other day, which is the drug that I had a bad reaction to last session. This time they had me on a slower drip. I had chills, but no rigers, so it was much better. I got through it ok. I woke up this morning feeling pretty good. I am currently on cyclephosphamide and a rescue drug for my kidneys. This is the drug that really helped shrink my spleen on the first round, so I hope that it helps with that.

I want to thank my friends for really coming through with great food. Yesterday for a late lunch I had Jean Hardy's spaghetti squash with tomato sauce and lentil salad along with carrot soup that Jackson brought over that his mom made. I ended up not having supper, as I mostly slept. They gave me a lot of benedryl to help mediate the rituxin, and that pretty much put me out, I slept through dinner and woke up quite late and had some toast and jam for a little snack. For lunch today, Linda Best came by and brought quinoa salad, potato salad, lentil soup and for desert - chocolate cupcakes that were not too sweet, but nice and moist. I ate till I was stuffed. My brother came by near dinner time and brought me good cheese and bread along with avacado and cucumber sushi. He also brough little lads popcorn to snack on, so I am pretty stuffed. My fridge is full of great food that I am looking forward to, and my appitite is good.

Thank you all for the great food. It has made my stay so much better. The dietician came by while I was eating lunch to see if she could tempt me into eating any of thier food, and when she saw what I was eating, she realized she was completely outgunned. I am eating breakfasts from the kitchen, because they actually do a decent job with that. Raisin bran and egg on toast sort of thing. Simple, but good enough. My friend Cathy is bringing me fresh quiche on monday, which always makes a good breakfast, so probably I won't even be eating the hospital breakfast anymore. Poor dietician, she does what she can.

I got unhooked from my multiple lines today at about 6pm, and got a chance to go for a little run. I did 5 flights of stairs, 4 of them doubles, and that felt great. It was a pretty good cardio workout, seeing that I am low on my hemoglobins. The physical therapy people came by today and left me some weights and exercises, so I did 2 sets with ten pounds - bench press, reverse bench press, row, shoulder lift and curls. I have lost a lot of upper body muscle, but it felt great to work it out to a light burn. Then I had a quick, but nice shower before I got hooked up again. All said, a pretty good day.

3rd round of chemo.

Back in the hospital, down at Midcoast, which is in Brunswick. If you are around, stop by, I would love to see you. My room number is 256 and my room phone is 406-7256. My cell phone does not get service here, which means that I can not call out, but I enjoy getting phone calls. You don't have to worry about waking me up, or calling at a bad time, since pretty much all I do here is nap. A phone call is a nice break from the routine. I will be here until at least Tuesday, and possible longer depending on how things go, and how my blood counts look.

A call for help.

I am headed back into chemo for round 3 this week, on the evening of July 4th. I have complained about the hospital food, and don't think that I can take any more of it. So, for all those who have been wanting to help us out, this is what would be really great. Food to take with me. There are some requirements:

It needs to be mostly vegetables - keep starches, cheeses, and meat restrained.
Organic is not a requirement.
I love all kinds of vegetables.
With the exception of chili peppers.
keep the other spices on the medium or mild side.
I have lost my taste for sweets. 
I don't eat pork. I also don't eat any other meat that is not small-farm raised. 
It needs to be something that can be frozen.
I only have a microwave to heat it up - no oven available.
The fridge is small so single or double portions work best. The container does not have to be microwavable, because I will let it thaw in the fridge.

If you are feeling up to it, and want and are able to contribute, you will really be helping us out. Another plus, is that I will be feeling the love while I am eating in the hospital, and that is always a nice thing. If you want to contribute and are unable to make drop something off by July 4th, don't worry, we will be doing this again, and you can drop it off anytime. We have a deep freezer available. If you have any questions, give us a call 322-7121.

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