Wednesday night - I could not sleep until 2 am and then I was up every hour there after. I may have eaten too much as I had a lot of abdominal/stomach discomfort. I had to keep my head elevated most of the night. I lost a few more pounds of water however.
I took a shower in the morning and I am officially losing my hair by the clumps now. There was so much hair in the shower, I thought the drain was going to plug up. When I toweled my hair dry, another whole layer of hair fell all around me. Now, every time I run my hand thru my hair, my hand is covered. So maybe I will lose most of it this time around. I know I will have to buzz it before I take another shower to prevent future drain maintenance. I guess it is time for me to start looking at hats. Maybe I will post some pics of me in different hats and you can all vote on the best look. What do you think?
I slept well Thursday night. I got an acupuncture treatment that evening. I was asleep by 10 and slept soundly with no pain or discomfort. Yes, I missed the last half of the Florida - OSU game and still don't know who won. I was still up every hour and a half but no real violent coughing spells. I slept till about 7 and was able to lay flat and even lie on my side a bit the last several hours. It has been months since I last laid on my side.
Friday - I weighed in at 164 lbs. this morning. It is so nice to be able to bend over and put on socks and shoes.
I had more blood work at the lab today. They are mostly looking at my absolute neutrofil count. This is a marker of some of the white blood cells that your they use to gauge immune system function. They generally don’t like it to go below 1000. At 500, your immune system is very depressed and you should avoid contact with people, wear a mask and they generally will start you on heavy duty antibiotics and shots of Neupogen which stimulates bone marrow production.
Back on 12/30/09, my ANC was at 6500, which is very good. On 1/7/09, my ANC was at 600 and today it was at 300. Not good at all! I really don't have an immune system at this time. Luckily, I don’t have a fever otherwise I would be in a hospital right now. So I had to get the Neupogen shot today. They said the biggest side effect is bone pain, mostly in the hips and legs. They also put me on an antibiotic to prevent the development on any infections. Hopefully my immune system will kick in gear this weekend and I will not have any infections. I am starting to get a hospital phobia. I have to be real careful what I eat and how my foods are prepared. As well as all the other sanitation/hygiene things to look out for. I still can not receive visitors as you can understand.
It is all a big bummer because I really thought I was coming around. (Except of course for the hair.) I have had more energy, some good nights, less pain and discomfort and my improved ability to get up and around.
I am doing my best to stay up beat about what I am calling, "Brian's Adventure Challenge". I appreciate all your love and support. Please keep all the positive thoughts heading my way. It really helps when I am dejected and down.
Love,
Brian
11 comments:
you are gonna be a cute baldy i am sure....i have about 10,000 hats you can borrow. i know this latest immune system thing is disheartening, but sounds like lots of other things are improving. must feel like a roller-coaster sometimes. keep the faith sweetheart. i continue to send positive thoughts and am having lots of strong images of you moving on thru this "adventure challenge" of yours. come on white blood cells...multiply like bunnies!
just know that altho you and glenda must stay kinda "protected" out there, we are over here thinking of you constantly.
i love you, brian!! susie
Brian, you'll look great "a la naturale!" I hope the fleece hat I sent you will keep your head warm and snuggly! How wonderful that you slept well after acupuncture! I always have a good nap during my sessions! It's always the most peaceful sleep I can get! So, let's order lots of acupuncture!!! Sending you hugs and love! Sandi
I've taken the liberty of finding a few hats for you:
Hats for Brian
I've also added comments so You'll know when they are in season etc..
I have a hat for you - wool and ssssssnappy!
Brian,
Continually see you playing music competely healed with all your hair. Stay stong and come back to us soon. Love you, Mary
"Brian's Adventure Challenge" is an inspiration to me by the courage that you show to all of us.
Love,
Jeremiah
Celebrate your inner pirate/biker!! Do-rag that dome!! And when it's sunny out, soak up a few rays on it for a nice golden brown hue. (Who knew there are 3 ways to spell do-rag, du-rag and doo-rag?! Thanks Wikipedia.com!)
I am visualizing rapidly multiplying white blood cells and would love to bring Tilly for a little visit when you are well enough.....and only if we are 100% germ free. Meantime, the petite peanut is getting fat rolls and a tooth!
Love to you both. Tanya xx
Thanks for writing and keeping us up to date. We think of you often. Can't wait to see the photos of you in the weird hats!
Lots of Love,
Catherine and Matt
Hey Brian and Glenda,
Sending you lots of love. THinking of you everyday!
Hang in there!
-Cat
Hi Brian, I have been reading and I am glad to hear your upbeat update. Enjoy the hats! I am thinking of you often, your courage is an inspiration. We'll get back to yoga a little later. Lots of love, Yves
B&MHey Brian (& Glenda),
Finally got an internet connection out here in West Papua so we could catch up with you. Now I know what to get for a very belated Xmas gift. One of the totally cool hats made from pandanus palm that come from these islands. I think B mentioned this but in case not, we both try to think of you often when we're diving during the day. That's when you are sleeping and since we're a day ahead we're sending good vibes to start your next day. Love you both. Hugs and fishes and lots of cyber kisses. Maurine and Burt
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