In a pretty purgatory (update)
Last edited Sun Jul 12, 2015, 10:39 AM - Edit history (1)
Home now for just about 8 weeks. My living room/bedroom suite that my amazing friends created (I can see the bay and the birds) has worked out perfectly. Most days are filled with delicious food and wonderful visitors which can be overwhelming but I'm grateful for every visit. I'm either in bed or in my lounge chair (I have to get there by a special lift because of the paralysis). I don't go out really except for a weekly trips to the hospital for a blood transfusion. 24/7 care now needless to say.
The thing is, I'm not getting better. I'm worried that the transfusions going to start coming more often which could mean eventually, they're just not working at all. They're barely working now. My red blood count drops from eight or 9 to 5 or six within a week.
I'm coughing a lot from- well actually I don't know where the coughing comes from but it can be relentless not to mention annoying when it happens just after eating or taking medication.
And then there are the fevers, which come every day usually in the afternoon and they are furious-102 or 103, barely responsive to Tylenol so usually I am being iced down a few times a day to bring it down to normal range. Between the transfusions and the fever it's all totally exhausting.
No idea how long I can go on like this which shoe will drop next, what to expect etc. Hospice is being great although I'm still hoping we can find something to try some treatment just to prolong my remission since cure is impossible at this point. It may be too late.
Anyway thanks to you all for being there and listening. I'm not done fighting but I'm get definitely getting tired..
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Some birds for you. I wish I could do more.
so glad you have friends and family around to make you more comfortable 
If you are up for it we stayed with two different people at Hope Lodge in NYC for a few months. One from Florida, about an hour from Miami, who just went home after fourteen months and saw docs at Columbia, Sloan and Cornell and is doing well. Another patient from the UK who was in hospice back in December and is also doing well. They both had a rare type of lymphoma, B cell or T cell.
I will send you the names of the doctors, their situation is still tenuous, but they are moving in the right direction. The person close to Miami has been out walking quite a bit since she returned home. Think she has the T cell lymphoma, had her spleen and part of her pancreas removed in a seven hour surgery and then had a cord plus haplo transplant a week or so later. Sometimes you have to move forward when the window is open, even though it might not be ideal. Columbia got her into remission and Cornell did the transplant. Send me a PM if you are up to it and you can always delegate this to a family member or friend as you have other concerns. Sorry you are getting tired and thanks for checking in.
Check your PM, I will give you my email and phone number and you can pass this along to a family member or friend.
but you are in my thoughts.
I am sure that this leg of the journey is extremely exhausting, but you keep fighting. Rest is your friend, sister. Allow the body plenty of downtime to account for all of the activity. We are with you every step.