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KaryninMiami

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Gender: Female
Hometown: Miami, FL
Member since: Wed Nov 10, 2004, 10:15 PM
Number of posts: 3,073

Journal Archives

Senior cat with dementia anyone?

My beloved, 16 year old Tabby Sophie seems to be loosing her mind. Certainly her memory (forgets her bed and only wants to sleep with or sit next to me), where her food is, etc. She can still jump up on to the sink to drink water (and verbally demands for someone to turn on the faucet), she's eating a lot (and losing weight) and bathing herself constantly. But, she still has moments when she's loving and sweet. Sometimes she just looks so lost however. Anyone else have a similar experience with a senior cat? It does not appear that she's in pain- just a bit confused. Any suggestions on vitamins or natural supplements? Thanks!

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!

In a pretty purgatory (update)

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..

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.

So it appears I have relapsed.

My fever (mostly low grade) returned a few weeks ago. I'd had a nice, six week fever free run over the holidays. Just prior to that, my thyroid basically stopped functioning causing me to gain 40 lbs in about 30 days-,without changing my eating habits. But that was certainly odd and disturbing. Some of the weight is water- in fact, the last few days my body has filled with water like a ballon- very scary and painful. Something strange was definitely going on.
We moved up my scheduled Petscan from late Feb. to today to rule out relapse. And the preliminary report shows, sadly, that my lymph nodes appear to be popping up again. As they did just before my auto transplant in Aug.
I'm still in shock-may wind up being a two Xanax night. If this is what it appears to be, I have another long, torturous road ahead probably culminating with an allo (doner) transplant which as I understand it, is the only chance for a cure.
Letting it all sink in- it's a lot as you can imagine. Will start researching alternative treatment options as well and if anyone has any info on holistic/homeopathic therapies with a history of success for TCell Lymphomas (or any lymphomas actually), please send them.
Damn it all- was really hoping I couid close this chapter and move on to something new and fun. Fuck cancer.

Namaste
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