Chocolate Contraband

Today has been a down day for me. After talking to the nurse practitioner I realized I have months (7 at least) of Chemo left. It will be harder as I’ll be an outpatient and have to come to the clinic every month for 5 days to receive the Chemo then go back to Sue and John’s to recuperate for a week and hopefully be able to come home for two weeks in between. I’ll have no immunity and no platelets but will now be out in the world instead of in the hospital in protective environment. I’ll probably have to go to a local Hematologist in Boca to draw my blood every day that I’m home. If I get a fever or sick they would have to treat me.

Sandy checked into an organization called Angel Flight – a group of volunteers who transport cancer patients home and back for treatment. We are waiting to hear from them. They travel out 1000 miles. Houston to Ft. Lauderdale is 986 miles! Whew!

They did tell me though that I came through the Chemo better than any patient they have seen. I’m hoping that is a tribute to my good health and condition. I pray it continues through the rest of the Chemo. Also, my joints, especially my shoulders hurt so bad – it is hard to get comfortable. Don’t know what that is. John and Sue came to visit tonight and experienced the new visitors’ room. Now that this department moved back to its original floor visitors stay in a small room with a window and talk by telephone! Sue was still able to smuggle some contraband to me – delicious chocolates and caramels. Yum!

The List

Day #23 – My platelets jumped to 94 (normal begins at 140 and goes to 440). My white blood cells have elevated to .5 but need to go up to at least 5. I’m hoping for a bigger jump for tomorrow. The new TV’s still don’t work in our new rooms so reading and surfing the internet will take up my time and talking on the phone. I don’t know how I would get along without the phone.

I thought you might like to see FYI a list of things I HAVE NOT DONE in almost 30 days:

• Taken a shower (yep, there are germs in pipes and in standing water, so no showering - sponge baths every day. I'm going to need a full body exfoliation when I get out of here!)
• Used a toilet (the worst! many germs are released when you flush so we go on pots with bags that are then examined and weighed - eeeeewwwwwwwww!)
• Worn a stitch of underwear! Nothing more to be said here.
• Shared a meal with another person (while I can have visitors they cannot remove their masks in the room and therefore cannot eat in my room)
• Used any sharp objects like a razor or toenail clippers (with platelets so low even a small cut or bleed could be disastrous)
• Walked more than 8 steps before having to turn around (in this 10 x 10 foot room with furniture it is hard to get your heart rate up even with pulling your IV pole.) I do have a little bike simulator that I sit in a chair and peddle several times a day.
• Gone to bed without side rails up and bed alarm on! (Even if I sit up to get a drink of water the alarm goes off and the nurse comes running in to make sure I'm OK. Again a fall or bleed could be devastating.) We laugh about it now.
• Stepped one foot outside these four walls. One day my daughter held the door open when she was leaving so that I could look out to the nurses station. We felt like we were misbehaving

Movin' On Up

Day #22 – My new doctor is Dr. Cortes. He seems nice. My platelets have jumped to 65 another piece of good news. The bone marrow test indicated that my bone marrow is still empty. Not good or bad result. We will do another next Monday and then I’ll be dismissed to go to Sue and John’s house. He said at least my marrow was not full of Leukemia cells. Yes, I’m grateful for that. Tonight we moved to a new floor – to where the protective environment floor had been two years ago. It was quite a procedure. The visitors have to stay out of the room in a small glass room and talk to the patient via telephone. It will be really difficult for the visitors. I’m glad I’ll only be here another 5 days or so.