Stripped pillows cases … Love you, Caryn :-)
A week of iV treatment week knew would be easy. The last week has not been pretty … Unpredictable uncontrollable diarrhea filed my pants …. a lovely mess once too much! Two days later, blood in my urine, increased shortness of breath me send me to ICU where now. I’ve been CAT Scan tonight … the battle rages.
One of my docs said I made a remarkable recovery from my 1st round of chemo … These pics offer perspective. On the right, pic was taken September 2013, in the middle of first chemo treatment that left me with eyelids that drooped uncontrollably, seeing double, “foot drop”, and sever neuropathy in my toes and fingers. The pic on the left was taken 8 days ago when I was guest firkin tapper … obviously strong and happy!
Yesterday I finished a week of IV chemo, my 2nd go around. I am told this coming week starts a battle tougher than the first. In the fall I had and put into remission ALL. This time I fight another leukemia, AML. I’ll take all your positive thoughts and prayers :-) Be well!
PS - That is my lovely and supportive friend Karen <3
After a week in, I came home last night. Criteria for returning to Karmanos is a temp of 100.4; last night it reached 100.1. I suspect I’ll last no more than a day or two before I have to return. Docs all say this coming week will start the real battle.
I was about to post when I saw your message, an image from Sep and a similar pose two weeks ago. Good to remember what I came back from. One doc this week commented I made a remarkable recover from my first chemo in the fall. The pics emphasis this, and is a good reminder.
Have you been watching the Winter Olympics? With the Ski jumps and training facilities in the UP I’d suspect everyone is glued to the coverage.
February 14, 2014
I used to believe I was very good at living in uncertainty…not knowing for sure what was around the corner, but comfortable with leaping knowing that the net would appear.
Of course, that all had to do with my work life. I’ve leapt forward on faith alone dozens of times in my…
McGonagle my love …
Given the range of complications that could develop, I could get home on Sunday and have to return to Karmanos within the week. I still get constant comments of, “well, your looking good,” from the staff and docs, which is certainly disconcerting since it is believed it will not last much longer. As one doc said, “It is the nature of the disease. Leukemia attacks your blood cells till your immune system is so compromised that you actually die of something else (some other infection).”
At this point I don’t get leery of the blood draws, but I do when vitals are being taken … waiting for my temperature to record, wondering if an infection is taking hold that could prevent my discharge on Sunday. Today I feel quite upbeat. Yesterday I was a little down. My goals help moderate my moods: 1. Don’t be rude to staff. 2. Remain sarcastically positive. Snapping at the staff does me nor them any good. At times when being sarcastic I have to remind the staff of the 2nd goal … or they take me too seriously.
Donna Rubinson, sounds like a beautiful name … someone I would like to meet. Well that is how I hear “Daunorubicin” which is a chemo drug used to treat acute lymphoplastic leukemia (ALL) and myeligenous leukemia (AML). This the second round of chemo, each time using daunorubincin, and I can tell you it is a double edge sword that helped rid me of ALL (and hopefully AML which I currently have), but along with the benefits come a few side effects hardly desirable.
This current round of chemo started four days ago, my urine has turned red which fades to orange as the day goes by (hardly a bother), and I’m developing mouth sores, though minor now, could encompass my gums and throat. A week from now I’ll be leery of running my hand threw my hair waiting for my fingers to act as a thinning comb. It is quite disconcerting to come down with a handful of hair the first time, but I’ll deal with it by cutting my hair as close to the scalp as possible. Also, low blood counts are expected as with most chemo drugs.
So if I do meet a woman named Donna Rubinson, I will wonder if she is a muse or a siren … or maybe both.
For the last two weeks I have loaded my time with things I enjoy. I spent a long weekend in the Philly area … I gained 12 pounds in a weekend! It was a revolving door of family for three days and the food never stopped. When I returned I loaded my week with friends, cooking, partying.
My last night before entering Karmanos for a week long chemo treatment, I was guest Firkin tapper at the Soup Spoon Cafe. The vid is me tapping the keg. Fun times surrounded with my friends … I am still smiling :)
I am in for 7 days of chemo which started late Saturday evening, so going home would not be until Sunday at the earliest. So far all is going well, no temps which indicate infections have yet to develop. That’s the kicker, the chemo lowers my blood counts to a point where I become highly susceptible to infections.
Caryn stayed over Saturday night leaving Sunday afternoon. I thought that was going to be an emotional parting, but her cousin stopped in to visit and stayed after Caryn left, which helped us both. Karmanos is about 90 minutes away from the Lansing area and discourages most people who want to visit.
This has been a quite the winter! We lost power twice for a total ten days, which is hard to complain about … we know people that lost power over Christmas for over two weeks. I’m ready for spring!
Capp Gone …
Another Rudy Baggs Ginger Cappuccino using housemade ginger syrup with red pepper flakes at Soup Spoon Cafe … sooo satisfyingly spiced and caffeinated!
I think back how life experiences have had their influence. I worked at a county extended care facility in my mid-twenty’s, it was hard emotional work, I lasted less than six months, and didn’t appreciate fully its impact until I left. I had nine patients to care for, many I carry with me today.
Two patients dying of cancer handled their conditions so differently. One man was a house painter by trade, angry he had worked hard all his life and didn’t deserve his predicament. At the time I had a beard and hair down pass the middle of my back. Each day he would curse me, and yanked hard on my ponytail. Sailors and painters must be of the same ilk, for he certainly did not hold back on the colorful language he threw at me. Walking down the hall past him sitting in a wheel chair, leaving for the day, he reached up grabbing my shirt and pulled me down to his level, and whispered, “I’m sorry”. The adrenaline flushed through me, not for being pulled down, but by his apology. Interesting, the next day he was back to cursing me out :-)
The second gentleman was on his last days of throat cancer. One of his nurses had asked him if there was anything he wanted. Whiskey, he wrote on his chalk board that he used to communicate, and whiskey he got twice a day. I occasionally had the privileged to put a shot down his feeding tube that went to his stomach. I asked him since he couldn’t taste the whiskey why he wanted the shot. As he rubbed his belly, he smiled, then wrote down, “For the burn! For the burn! Throughout his stay he was thoughtful and considerate, always having a smile for the staff.
I know people can change, but I’ve come to realize that if through life people have seen their glass half empty, so they treat their impending death.
Ginger Root Spritzers
Last night cooking side by side, joking and reminiscing, pondering our troubles, it was as it should be, four friends appreciating the easy flow of time, centering and relaxing.
Since the end of July I have had four stays in two hospitals of ten days each. Another stay coming this Saturday for at least another seven days. Then I have had home care since August. My point, the nurses I have encountered have been exceptional! They have advocated for me at Karmanos while some docs crossed wires on care. And my home nurse has put up with my unwarranted anxiety over my PICC line bandage and caps being changed. The picture is of visiting home nurse Sandy. Nurses are the best!