This is entry #1 for 2017. Sending lots of love and good wishes for a great 2017 from me and Antonio for a happy and healthy year to you and your loved ones.
Regarding my request in the previous entry about whether to continue or not writing the blog, here are my thoughts: Thanks to those who let me know what you think. The consensus seems to be that I should continue, even if less frequently to keep people in the loop about my progress and setbacks, so for now at least, I’ll continue, but probably monthly or less and much more focused on my health and treatment. No more or little cutting and pasting reader comments. You can read those if interested. I don’t need to repeat them in the blog itself.
On my health,
While in FLORIDA: we went to the beach and pool for hour-long walks and leg exercises. –not perfect or easy, but I did it! Thanks to Antonio’s coaching, insistence, encouragement and pushing, I can also now get down on the floor and then stand up: something I couldn’t do even 2 weeks ago.
So, overall, improving – even doing a few pushups from time to time!
I still have annoying tics still but far fewer. For example, I’m not as fidgety as before – my fingers are overall calm- no more scratching of my head and neck – or much less – almost no holding up my head with my fingers. But I have a new bad tic of putting my tongue out of my mouth for no apparent reason. Annoying to me and others!
My hair is growing back quickly and thick!
I know my belly is going down, but I still feel bloated and miss my pre-cancer body.
On the down side:
Still scratching my leg unnecessarily, eating too quickly, dragging on my left leg, I’m still easily distracted and multi-tasking when I should focus more!
OBSSESIVE THOUGHTS: I have been waking up during the nite obsessed with going financially broke when I know I’ll be just fine- I have $6000 per month in pension income. Antonio helped me do a financial review and along with my bankers plan, it’s not that I have any real financial problems, it’s just my mind playing games and not behaving normally. Other examples: starting to make pasta in the morning for breakfast, wanting to go to Baltimore or brushing my teeth at 3 am and waking up Antonio when the thoughts enter my mind. – Cancer sucks!.
My Voice is scratchy and low. Olivia (Speech Therapist) suggested a check up with an ENT specialist. According to Alison (nurse practitioner at Sloane) this is likely a side effect of one of the immunotherapy drugs: Avastin.
I’m still experiencing incontinence and still pooping and feeling crappy. – I’m up probably almost hourly each night to pee and still I have accidents. I can be standing next to the toilet and wet myself before I sit down or pee into the commode. Getting better, but hate that I can’t fully control myself – this has been a focus of my psychotherapy as well. I feel like an infant who has not yet been toilet trained. I hate the feeling of being so out of control like a 2 year old, and soling myself. Antonio has been a saint in staying by my side through all of this stuff. More reason to love him – as if I need another reason!
At today’s consultation with Alison at Sloan, I shared with her all my reality described above. According to her, there is a lot of evidence that these are caused by the swelling in the area surrounding the tumors due to the effects of the immunotherapy and not because of a tumor growth as such, if that were the case, the side effects would be more dramatic
Have been watching the news and that does not help my state of mind. Wish I could be out marching, too, but for now not possible! Not physically ready and the idea of being in a crowd of 1000s scares me! Even with 6 people, it’s too much!
We will head to Maryland for a short family visit on Wednesday into Thursday and have occasionally been going out for dinners and lunch – then home for long naps. Sometimes 2-3 hours.
That’s it for now!More than enough info to keep people in the loop.
Tonite going to a movie after treatment. And we have been watching Netflix – Mozart in the jungle and love it!
Have a great evening.
ANTONIO, Dave Schofield and me
Dave Schofield and me – KeY WEST SUNSET
Key highway warning
ANTONIO, and me – KeY WEST SUNSET