This week I received my second care package from my work friends at Maritz that had all sorts of goodies in it. I want to thank everybody for all the thoughtful gifts and cards. The restaurant gift certificates will especially be useful on those days I don’t want to fix anything at home. Here are some pictures, click on each picture to see a bigger image.
As for my recovery, I am coming up on the first milestone in Stem Cell Transplants which is the 30th day after transplant. I will probably have a Bone Marrow Biopsy scheduled and will find out Tuesday when my doctor is planning that.
I am sleeping better after being prescribed a pill for insomnia. My appetite is OK, but sometimes I have to will myself to eat because a lot of times I feel full. Once I start eating, I eat an almost normal portion of food. The good news is in the last few days plain water now tastes normal to me – no more metallic taste! I have been drinking so many sugary drinks it will be nice to just have a plain glass of ice water.
I was hoping the cold temperatures a few nights ago would be a killing frost. It was in some places but not in the city. I think the cold will reduce a lot of the stuff floating in the air so I can start walking outside more without my mask.
That’s all for now, I will probably post again after my next appointment with doctor Nov 2.
Yes, it has been a couple weeks since I have posted. After discharge, my doctor has scheduled once a week office visits every Tuesday. The office visits consists of getting lab work done, reviewing the latest counts, changing the dressing on my catheter, getting any “products” (which so far has been just growth shots to stimulate white blood counts), and discussing any issues I am having.
Today was my second visit since discharge. My counts are kinda steady now, they are still below normal but not going down either and this is all expected and they will slowly go up in weeks ahead. I have two big issues at the moment. First, my taste buds and lining inside mouth are still recovering, so food and water have an odd taste. For example, water tastes kind of metallic and I can’t taste some portions of food. I switched to a lot of flavored bottled water and keep forcing myself to eat even if the food I normally like does not exactly taste right. My second issue is insomnia…I have not had a decent nights sleep since I have been home. My schedule seems to be off where I don’t fall asleep till around 3am. The doctor has already tried several drugs that have not worked so I have a new insomnia pill I will try tonight, Trazodone.
You would think being home all day I would have all this free time, but oddly most of the day seems to be full. With sleeping late, then breakfast, and reading paper it is already around noon and time to eat something for lunch before watching Ellen (just kidding, I only watched her the day Clint Eastwood was on 😉 )
I have not been outside for any extended periods, mainly because of the mold and wind and leaves falling. I can drive again, so I can go to my moms house and the store. I hope to at least get back to walking around the park soon. I finally got the exercise bike at my mom’s house over to my house, so I can start using that too (thanks Margie and Charlie!). I wear my mask when going for the office visits but hopefully if the weather and wind calms down I won’t need it outside. A nice killing frost would probably be good for me. (I was bit by a mosquito on my bald head the one time I was outside for a few minutes!)
Susan comes over several times a week to bring me dinner and I also go over to my moms a couple times a week for dinner or lunch. Since I am home so much more, seems like I am doing a lot more laundry and housekeeping. Most of you think I am probably spending a lot of time on computer, but really I am just sticking to checking emails, Facebook, and the fantasy hockey team lineup. Once I get over this insomnia, I will have to get back to a more normal pattern and get up earlier like I would if I am going to work.
Speaking of work, it is looking more like this will be a three month recovery. Being at Maritz 25+ years means I get 100% disability till about February and it looks like I may use that all up. But, I also have the ability to work from home, so maybe I can work part time sooner…just have to see how it goes. They just sent me the 2011 Health Insurance Open Enrollment in mail so I have to review that carefully to see what will be best. I have already met my 2010 out of pocket maximum. If you are wondering, I am well into the $50,000 range and thats before I was admitted. The max I will pay though is only $2,800.
Well that’s it for now, let’s see if I can get a good night of sleep tonight 🙂
I am back home now 🙂 I got discharged late in the afternoon with some prescriptions, detailed instructions, and a medical care package. Nice to finally be back home but it took a while to get settled in. When I left, it was in the high 80s, now I have to turn the furnace on!
You see that I wear the mask when inside the hospital, because there are a lot of sick people around and dust from construction. There are other situations where I need mask also, but eventually that will go away. Basically the most important things now are to stay away from mold or wood products and things that stir up a lot of dust (Bonfires, people mowing lawns, things like that).
As for health, now it is just recovery. I will have first doctor visit Tuesday and I will get a better idea how often I will go into office. It is possible I will only have to go in once a week. I only have four prescriptions to take daily and they are pretty inexpensive. As an indication of progress, my white blood count is now 7.4, with normal range being 5-10 (I was just at .2 only 5 days earlier). I have not been above 2.5 since my first blood test in early July, and who knows how long I was low before that.
Next goal is to find out when I can drive again. I think they just want to make sure I don’t have any reactions to drugs so hoping by end of week I am back on the road.
I will probably stop updating this blog daily. Thanks for all the comments in the blog and on Facebook. Email me any time if you want more info. I know the one question a lot of people have asked is if I can have visitors and/or can I meet people for lunch. Let’s wait a few weeks but I think I will definitely be able to meet people for lunch. We may may have to go at off-peak times because they want me to stay away from big crowds. And in a few weeks, my appetite should be back too 🙂
Another quiet day today, got a little exercise in and worked on the puzzle. Tomorrow they will get all my discharge papers in order with a list of medications I will be taking. The big change now is converted the Tacrolimus from IV to pill form. Tonight will be the first night I get the pill and I will take that twice a day for awhile. It helps prevent me from rejected new stem cells and getting Graft vs Host disease.
Still have the weird appetite changes and some things just taste different. For example, plain water has a kind of metallic taste to it, so I am drinking more of the flavored water like Propel or Gatorade. This should issue should go away in a few weeks.
Time to start packing 🙂
Counts keep going up and discharge is looking good for Friday afternoon or Saturday morning at latest. Went to another discharge class today. There will be a lot of precautions to take when I get home, but on other hand you don’t want to put your life into a bubble.
My mom is taking care of getting my house cleaned. They also recommended we change the air filters in my house and my mom’s house. After I am discharged, will still be going up to the hospital twice a week at first for labs.
How about getting all those miners out!
My counts again shot up today. ANC is now 1533, up from 224 and already higher than when I was first admitted. WBC is 2.1, up from .7 and almost to the high point of my entire hospital stay. The doctor said technically I meet the requirements to be discharged but I still have this sore throat causing my appetite to be off. Looks like Friday will be the day 🙂
My immune fighting counts have started to come back up:
- White Blood Counts (WBC) from .2 to .7
- Absolute Neutrophil Count (ANC) from practically zero to 224
WBC fight infection and the normal range is 5-10. I came in at 2.2, and really it has been below 2.5 since July 1. ANC’s are immediate bacteria fighters. Normal is above 1000 and I will have to stay consistently above that level before they would discharge me. Platelets and Hemoglobin/Hematocrit were out of range tonight, so I got 2 units of RBC and 1 unit of platelets.
Still having a problem eating solid foods, not because I am not hungry, but because I can’t swallow easily. Eating a lot of creamy things like Cream of Wheat and corn puff cereals in a lot of milk. Also I am eating a lot of odd combinations with a lot of sugar in them. Hopefully I won’t end up with a mouth full of cavities instead of mouthful of sores! 😉
Today I continued my morphine drip to quiet the throat and mouth issues. It seems to be working well, I would say my pain went from a 7 to a 2. But, I still really can’t eat any solid food on its own. Sticking with popsicle’s, shakes, cream of wheat, broth soup, and cereal.
Dr Dipersio, the head doctor of the department, stopped by this morning to see me (all the doctors rotate monthly to do rounds). We were joking about the hot weather and I said “I guess I will have to deal with that in a couple weeks”…and he said he thinks I will be out of hospital in a week! So it is getting close…
My mom and Susan stopped by for a bit in evening. Mom wanted to see my buzz cut in person 😉
Today was a bad day. I have mouth sores and irritation in throat which is making it extremely difficult to swallow. Ironically, the doctor was almost pleased that I was finally having some issue since I have been cruising through the treatments rather easily in comparison to a lot of other patients 😉 Anyway, we tried a couple things and by nightfall decided to go to a morphine drip. After a couple hours, it feels much better now.
But then later in night, I had some consecutive high temperature readings so they started the standard protocol of a chest x-ray (done with portable machine brought to my room), antibiotics, and a urine sample. Everyone here is saying it is completely normal when your counts are soo low for this to happen.
I also need blood infusion for the first time in over a week as I barely was under the cutoff level. The good news is the extra blood should perk me up tomorrow. Finally, they also gave me magnesium, which causes parts of the body to get a warm flush as they infuse it.
My brother stopped by for a little bit, so naturally we had to get a picture 🙂
Today I got a surprise care package from my work friends at Maritz. It was full of all sorts of goodies: Puzzles, food, games and dvd’s, and some very nice get well cards. Thanks everybody!
As far as my health goes, today I am dealing with a sore throat which makes it irritating to swallow food. Going back to more soft foods and more liquids and popsicles. My counts are still way down, which is expected. Maybe by Sunday or Monday the counts will start to go back up.
The final big news is today I really noticed my hair starting to fall out. So tonight, we just gave me a buzz cut so I wouldn’t have to deal with hairs falling all over the place. What do you think?