Troubled Waters

Briefly, I am now on Ritalin to boost my energy and strength. It works, even though it makes me a bit shaky. I have been eating well - thank God! - and have gained a bit of weight. My big fight at the moment is that I am having panic attacks. I have never experienced them before and can't seem to control them. We go to visit my palliative care Dr, who is great, tomorrow to see if they might be caused in part, or solved in part by medication..
Today we saw my medical oncologist (chemo) and the plan is to start steroids tomorrow to see if they help the swelling and to also start one of the new bio-drugs, Tarceva, a kinease inhibitor, which is designed to block cell tumor cell growth by targeting the protein called the Human Epidermal Growth Factor Receptor. Along with that, we will restart the Gemzar that I was on before as it did have a slowing effect on the cancer. I like this plan of attack.
Even better though is the conversation we had with the Beth Israel social worker, Darren Arthur, who not only knows the ins and outs of the system to try to get home health care for me, but also helps me identify and understand the source of my anxiety. (3 major sources: abandonment - my birth mother abandoned me and my brother when I was 2 and Diane's return to school after a whole summer off has triggered that; second I am dealing with the first illness in my life that I can't manage a "work around" as I always have; third I am very social and the swelling has really put a damper on my old habits, especially of talking with people, and directing plays, and such) So I feel that I can start to deal with these issues now that I have an understanding of where they come from. Much better than just saying as I did in the first paragraph (that I wrote this morning) I am powerless to deal with them. Don't you think?
Oh! and I forgot to mention that I have gained 4 lbs in the past week. Still 3 pounds short of where I should be for a minimum but it is great that Diane's shakes and our determination to get back to a fighting weight is starting to work.
So while this has been a good day, or more accurately a definite swing in the right direction, I can't sign off with my usual "Yep, it's a great day!" just yet! Though as I write, both Poe (the ginger) and Whitman (the grey short hair feral-come-adopted us) cats are at the bottom of the bed! Good boys!
"Yep, it's a good day!"

Downs and Ups

Back again! We, Diane and I, have been through a very rough period both physically and psychologically. My weakness continued and early this week I developed bleeding in my nose and mouth. Luckily that went away - but at the same time I was so week I couldn't stand up. This lead me to become extremely depressed.
We went to see my surgeon to find out about the bleeding and the white fungal type stuff in my trachea's stoma (the hole in my throat.) The news was quite simple - the disease has progressed and the white area is disease with perhaps an superficial infection, and the bleeding was coming from more disease at the back of my mouth & nasal passages.
While this may sound terrible, it was good to know what was going on.
The surgeon suggested I have a "peg" (feeding tube) put in to avoid using my mouth for food. i decided that I didn't want another surgery now and would add the weight orally.
The remarkable thing is that once we'd made the decision and emailed my palliative care doctor about the weakness and depression, we felt we could make a plan with his help.
Add weight with a concerted diet of Carnation Instant Breakfast Very High Calorie cans (560 cal each) mixed with peanut butter, oil, and ice cream. Start taking a stimulant, Ritalin, to make me feel stronger, more energetic, and increase my appetite. And approach my chemo Dr to go back onto chemo to slow the disease again.
Remarkably the next day I was stronger, had a 2700 calorie day, and felt like the extreme depression (almost suicidal) was lifted! Perhaps it was just the little pill - or maybe it's my natural state and I needed help getting there - but my mental transformation is so remarkable that I can hardly believe the thoughts I was having before.
My palliative care doctor, Stewart Fleischman, pointed out that cancer can do that. It can both sap your strength and medicinally create depression.
But it feels great to be back fighting!
Oh! And here's a great little discovery from last night: I can use my wedding ring to open my left eye! i take it and put in right over where my pupil is, which holds the swollen eyelids back allowing me to see out of two eyes at once!! I'll try to find rings that work even better that I can put in both eyes. It may look odd but from inside it makes the world so much brighter!
Of course, I have to tell you that our ginger cat, Poe, was very attentive throughout this whole episode. If I was on the bed, he'd be there. If I was on the couch, he'd be above me on the pillow, and he silently followed me around for several days. Very sweet! So again I say to you " Yes, it's a great day!"

Introduction to My Health

All mine: 3 kidney transplants, a pancreas transplant, 27 years of type 1 diabetes, 4 plus years of metastasizing cancer, a broken leg, elbow, wrist, both feet, hands, skull and ribs (yes I might be accident prone from time to time,) plus all the secondary illnesses that waltz along with these problems (osteoporosis, Gastroparesis, cataracts, chronic facial swelling (also known as moon face - see photo,) gall bladder failure, impacted bowel, chronic bleeding, etc...)

I have survived over 40 years of ill health. Sickness does not dominate my life. And okay, this is about my health, but it is also about yours. I have learned to live a life of chronic patienthood where I am not dominated by illness. I have managed to focus on goals that have nothing to do with illness. Living life for me is learning to surf above the uneven terrain of my health.

I had chemo Tuesday. Again. I’ve lost track of the months I’ve been on, but I started 7 drugs and two years ago after two years of surgery and radiation. And it IS a drag! So, to divert myself from the on-coming nausea and tiredness, I started this blog today.

I hope this blog will help others who are living with chronic illness, to laugh. Also, if you are already a friend, this will keep you updated on my health. Most, my wish is to help other patients realize hope and gain knowledge through shared experiences. (No one wants to, or should have to, deal with chronic illness on their own.)

Today’s word: GEMCITABINE, my current chemo drug. Don't ask me to say it, please. Pronouncing it would be difficult for an intact person and, as it is, I have only half a functioning tongue. 2 weeks on and one week off. Side effects: nausea, puffy skin, and fatigue. And fatigue. It seems to slow down the cancer, (metastasized squamous cell carcinoma that started in my rear tongue and spread to my lymph nodes and then (now) to the sub layers of my skin on my neck and chest. It hasn't stopped me.

I get up each morning and remind myself that I’m going to be swollen, tired and nauseous. So if I get something done, like epoxy the hatches of the kayak I’m building, it’s a great day!! Or if I get through all my (liquid) food, it’s a great day! Or if one of our cats comes up to say hello, rub itself on my leg and settle down for a nap near me…yep: great day!

Today is a great day! Thanks for reading.