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Sun May 31, 2015, 06:58 AM

Update (not great news)

Unfortunately it's been a rather miserable few months. In mid Feb, I checked into the hospital at the point that the fever was not responding to Tylenol and the water weight (45 lbs) made it impossible for me to move around. That last chemo treatment literally flattened me. It took days to get me stable with transfusions of various types. But the worst part was the pain as my skin had stretched tightly to accommodate the water. So, between the pain from neuropathy in my feet and the excruciating pain from the stretched skin, I just wanted to die. Three weeks later most of the water weight was gone but I was unable to walk. Being off my feet for that long had weakened my legs so much they could no longer hold up my body. I was transferred to an acute rehab center in the hospital where for three weeks we did everything possible to get me to walk it again. But it was not to be. Spent another three weeks in the different rehab where once again I was still unable to walk. The neuropathy sadly had crept up to my chest and took over my hands. Turns out the chemo treatment in February had been too strong for me. And because I'm so weak, I'm not able to undergo any additional treatment for the cancer so I signed into hospice. Last Saturday I returned home after being away since February. My living room, thanks to my amazing friends, has been transformed into a bedroom suite. I have 24/7 care now and am adjusting to my new life. It's very weird but so great being out of the hospital and rehab.
If the neuropathy goes down significantly, I still might be able to have some treatment which would be great. I'll probably get thrown on hospice but we'll cross that bridge when we come to it. The good news is that as of three weeks ago, CAT scan showed no cancer. So now it's a race against time. Will the neuropathy diminish enough for treatment and if so will this happen before the cancer has spread? Or will I just live out my remaining days bedridden at home looking out over Biscayne Bay, surrounded by my friends and loved ones? Time will tell.

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Arrow 8 replies Author Time Post
Reply Update (not great news) (Original post)
KaryninMiami May 2015 OP
Solly Mack May 2015 #1
CurtEastPoint May 2015 #2
sinkingfeeling May 2015 #3
Ruby the Liberal May 2015 #4
onethatcares Jun 2015 #5
NCarolinawoman Jun 2015 #6
slipslidingaway Jun 2015 #7
Tab Jun 2015 #8

Response to KaryninMiami (Original post)

Sun May 31, 2015, 07:10 AM

1. I'm glad you have such great friends!

Keep us posted. Please know I'm thinking of you.

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Response to Solly Mack (Reply #1)

Sun May 31, 2015, 07:12 AM

2. Yes, you are warmly thought of.

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Response to KaryninMiami (Original post)

Sun May 31, 2015, 09:52 AM

3. I'm glad you're back home. It's the best place to heal. Hang in there and keep us posted.

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Response to KaryninMiami (Original post)

Sun May 31, 2015, 10:16 AM

4. Home for healing and rest

Give your body time to recover - you have really been through the wringer the last few months. Have thought of you often and so happy to see you here!

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Response to KaryninMiami (Original post)

Mon Jun 1, 2015, 02:38 PM

5. you have my heart.

words escape me so I'll leave it at that.

all the best to you. always

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Response to KaryninMiami (Original post)

Tue Jun 2, 2015, 08:50 PM

6. I am so very sorry for all that you have been through.

I have neuropathy throughout my whole body now. It is so very painful. I am on palliative care at home and cannot walk. I have many wonderful caregivers--kind relatives and friends. We are both blessed in that way. It is still very difficult.

Big big hug to you

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Response to KaryninMiami (Original post)

Wed Jun 3, 2015, 08:24 PM

7. Thanks for the update, although it may not be great news ...

sorry you have had to travel this long road and I can only wish you recover enough to receive additional treatment if need be. Happy you are surrounded by family and friends. We met a person at Hope Lodge who was in hospice in December and is currently receiving another transplant. We will visit him on Friday after my husband's appointment. Time will tell is so appropriate.

Update when you can and want to, but try and stay determined.

Many hugs and positive thoughts coming your way.

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Response to KaryninMiami (Original post)

Sat Jun 13, 2015, 12:05 PM

8. du scheisse

Wow. That's a lot. I'm not even sure where to start, except that my thoughts are with you and if there's anything I can do please PM me. If only for conversation, or if you'd like help making something (no idea what) happen that's in my power to help, just ask.

Update us soon.

- Tab

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