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Tue Nov 10, 2015, 08:44 AM

Still here and feeling good

No idea what's going on and as I'm under hospice care, petscans and catscans are prohibited as is chemo or other cancer treatments (only paliative care), there's no way to know where my lymphoma nodules stand. Since late Sept., the daily fevers and vomiting which plagued me for months, began to subside and I started getting stronger. Today, aside from the neuropathy in my feet and legs (which prohibits my walking) and hands which appears to be lighting up, I feel pretty normal and very much like my pre-cancer self. My hair has grown out a lot- it's thick and curly now- very different then my straight hair from before. I've started physical therepy twice a week and am now able to stand up (!) for about 25 seconds at a time and I'm working on my arm strength so I can transfer from a chair or bed to a wheelchair without needing the lift machine. Eventually I hope to be able to transfer to a car. What a treat that will be!
It's bizarre - but in a good way. 5 months ago, I really did not believe I'd be here today but here I am! Drinking wine, dining out (three restaurants an easy wheelchair ride from my house) and entertaining friends at home. My almost weekly red blood transfusions are now 5-6 weeks apart.
Knowing of course that this could go away at any time or that my compromised immune system could mean a cold or flu could kill me, means that there's always that "don't get too hopeful" voice running in the background. I keep thinking of that movie "Awakenings"- it all just went away after a while. So, making long term plans is not something I can do. And I still require 24/7 home health care which costs a fortune (not included with hospice or covered by insurance- thank God I saved for retirement!) but it's necessary until I can get myself to the bathroom, kitchen, etc.
The only changes to my diet have been the adding occasional guanabana (fruit from the tropics) and squalamine pills (supplement that may have cancer and immune strengthing properties- am doing a trial). Would love to get my hands on some cannibis oil- if anyone has a connection, send me a pm ok?
Because there's no way to know how long this will last, I'm doing my best to stay focused on the present and relishing every moment spent with family and friends, enjoying the sunsets from my balcony and breathing in the air outside and enjoying the occasional cool-ish breezes (I'm in Miami) when my aide Jackie wheels me around outside for our almost daily walks.
Yesterday, with great effort, I was able to wiggle my feet ever so slightly- a huge breakthrough. One day and one step at a time, right?
That's the update for today. Five pelicans just flew by my window. Must mean it's going to be a good day!
Thanks as always to you all for listening and your support through this journey!

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Reply Still here and feeling good (Original post)
KaryninMiami Nov 2015 OP
Siwsan Nov 2015 #1
slipslidingaway Dec 2015 #2
KaryninMiami Dec 2015 #3
slipslidingaway Dec 2015 #4
Tab Dec 2015 #5
Solly Mack Dec 2015 #6

Response to KaryninMiami (Original post)

Tue Nov 10, 2015, 09:55 AM

1. What an inspiring update

Proof that we never know what tomorrow will bring and that we should live every day to the fullest of our abilities. You are a champion at that skill!

I hope you can get a hold of some cannabis oil since I've heard it really helps to relieve the neuropathy.

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Response to KaryninMiami (Original post)

Tue Dec 1, 2015, 11:33 PM

2. Thank you for the update ...

and I am glad that the transfusions are less frequent and that you are getting stronger. I think sometimes the treatments take a little longer to show up, of course we never know how long they will last.

Enjoy each day, thinking of you

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Response to slipslidingaway (Reply #2)

Wed Dec 2, 2015, 10:32 AM

3. Great to hear from you

So, it's not all that positive and rosy but I did have a nice run for a while. I'm currently in the hospital having a blood transfusion- barely made 2 weeks before the fevers and coughing returned. No idea what's to come but doing my best to stay positive.
One day at a time, right? How are things in your world?

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Response to KaryninMiami (Reply #3)

Thu Dec 3, 2015, 12:03 AM

4. Hoping the transfusion made you feel a little better ...

and you are now at home and comfortable.

I understand that sometimes we put forth the better details and hold back the less rosy picture. Glad you are trying to stay positive and taking things day by day.

All is OK here, some minor problems, but no real complaints.





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Response to KaryninMiami (Original post)

Sat Dec 5, 2015, 12:58 PM

5. Karyn, good for you

hang in there, we're with you. PM is you want.


- t

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Response to KaryninMiami (Original post)

Thu Dec 17, 2015, 12:38 AM

6. ((((hugs))))

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