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.
It's funny you mention all the snow in Traverse City area. I am now seeing more and more pics and articles about it popping up on my facebook and tumblr feeds. We received some snow and are at 151 in. Keweenaw county right above us has almost 100 more inches than us. Crazy! Is today the day you might be able to go home? How are you feeling? I always check for your posts :)
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.
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.
Just thinking about how you are doing down there at Karmonos. I hope you are doing alright. When do you get to go home?
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!
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.
Spending time with best friends this week before entering Karmanos for a week long intensive IV chemo session this coming Saturday. The outcome of the chemo is very questionable, so now I surround myself with loving, positive people. My blood counts are getting lower which causes me to be susceptible to infection from others, which is causing consternation, balancing wanting to be out and about while knowing it could increase my chances for negative outcomes. Washing hands and or having hand sanitizer in pocket ready to use after handling door knobs and such, and after shaking hands. I have taken to hugging to avoid hand contact, and it is SO much more enjoyable and rewarding :)
I mentioned to my docs, that I’m tired of people saying, “You look great!”, knowing I am not. I usually respond with a smile and a thank you, occasionally sarcastically I answer, “Looks can be deceiving”, or “You can’t tell a book by its cover”. The docs basically say that is the nature of leukemia, you don’t die from leukemia, it attacks and weakens the blood cells till you “catch” a virulent infection that is unshakeable.
So, postponed dinner tonight until tomorrow night so the household of cold carrying children can be in bed and adults can have a late dinner of paella. I’ll be ready with sanitizer and arms outstretched for loving hugs!
A quick synopsis of decisions made yesterday. A week from this Saturday I enter Karmanos Cancer Center for a week of chemo. Given my history for sensitivity to chemo a week stay could turn into a month, and could end going home for hospice. Remission rate is less than 20%, which is much better than zero if I just sit and wait for my demise.
So this coming week I front load my time with friends, food, and drink. Keep me in your thoughts, but beware, contact highs may invoke moments of extremely joyous feelings!
Until I better understand all my options I have been spending time with friends. A few for the the first time hear my story of leukemia, then we reminisce and depart as there will be a tomorrow, a next month, or a next year. Today with friends on a road trip we will chat and laugh, we will talk about avenues that have or maybe should still be explored, we will talk knowing I am about to decide on quality or quantity of life. We will depart with somber smiles valuing our past and wondering about our future. Tonight I will spend with friends and their family of young adorable rambunctious children having dinner, enjoying wine and spirits knowing contemplation of hard questions will begin to culminate tomorrow. We will depart comforted in the warmth of their family life.
I meet my oncologist and his team to hear limited options for treatment tomorrow with my partner and companion, my love of 25+ years, my BEST friend. We will hug and tear, maybe sob as realities are fully understood. We will depart better understanding and cherishing the tomorrows that remain.
I’m in the Philly area visiting family because I feel and look great which may not last long given the news I received from my Doc this week. My leukemia keeps morphing into something else, each time less treatable with less chance for remission. So another appointment this Thursday for blood draws and analysis, then the team offers options based on my numbers. Apparently, I am very sensitive to chemo which in the past has caused neurological damage. So my wife and I are getting closer to hard decisions of whether treatment is worth losing quality of life over questionable increased time of “living”.
Oddly it is still pretty academic for me, but my emotions are close to the surface. I currently have little pain (mainly discomfort), and little evidence of failing health. As this changes so will my attitude. People constantly tell me they are amazed at my positive approach. I want to say my attitude “may” change, but I have little expectation that it won’t. In the gut of my belly there is a fear of the unknown, a fear of finality.
We have had conversations with various family members, both mine and Allan’s. We have had conversations and spent time with many friends.
I have booked Allan on a flight on Wednesday, 1/22 to fly to Philly and spend time with his siblings and nieces/nephews. I checked in with…
I haven’t been back to Philly since my nephew Steve’s wedding a few years back. Caryn and I always travel together making the 10+ hour drive together. This will be a trip without Caryn, a first in many, many trips back to Philly.
Yesterday started by making a delicious potato hash of mushrooms, peppers, onions, garlic, all topped with a sunny side duck egg. Great food to carry us off to Karmanos Cancer Center in Detroit. Docs were not very positive, and my treatment options are dwindling. Caryn updated her blog last night that sums up the our visit pretty well.
Growing stronger and not strong enough to leave the house alone, is frustrating. Growing stronger brings desires I can yet fulfill. Growing stronger (recuperating from the chemo) is permitting me to enjoy the holidays, entertaining friends at home, and cooking more and more. And yet, waking this morning I found I was bored. I am missing the little things, walking in the woods, the routine of driving to the store, playing racquetball. Until my world was upended in July, I played racquetball close to everyday, sometimes twice a day, sometimes for hours at a time. Before July, I would drive to my favorite restaurant, the Soup Spoon Cafe (my “Cheers”), sit at the bar chatting with newbies to the “Spoon”, chatting with friends … sometimes through two and occasionally three meals!
I rarely see double now so that isn’t as much of an issue for driving as it was. Again, I haven’t driven on the road since July. I also lost considerable strength in my feet, particularly in my left foot, that has yet to fully return. Most times I can separate myself from my current abilities. It was actually comical when I tried to move my truck and almost ran into another vehicle in the driveway … it took me by surprise, and I laughed. I drive a five-speed small pick up; the clutch was more than I could handle. I am still leery of driving an automatic too, not sure I have the strength to control the break to stop. Getting stronger, waiting to be strong enough.
It’s snowing today, maybe I’ll venture out to make a snow angel (hoping once down, I can get up) … I told Caryn when she returns and if I can’t be found, I’ll be chilling on the back porch :-)
Whew. Made it through another year…it’s been a rough one, especially the last 5 months. That’s when we began our journey through the maze of acute leukemia, treatment, setbacks, plot twists, and truly living in uncertainty.
Dr. promised he’d have Allan in remission in 30…
Caryn, sums up 2013 pretty well. Interesting is I leave the negative memories behind. Not saying they are forgotten, certain triggers will bring them quickly to the forefront of my consciousnesses. Yet for now my growing stronger (recuperating from the chemo) is permitting me to enjoy the holidays, entertaining friends at home, and cooking. Not just cooking, but creating, blending flavors, caring on presentation!
I hope you are feeling alright and have a very Merry Christmas :)
Thanks, actually feeling pretty good. The ice storm (Saturday night/Sunday morning) did us in, though. We lost power and they are not thinking it will be back till after Christmas. House is holding at 52, but the tomorrow’s high/low is forecast to be 19/5! We actually had scheduled a back up generator to be installed today. Ha, a few days late :)
How about you? I think I watched you get another dumping of snow. How about your temps? By the way, I appreciate you checking in on me :) Merry Christmas to you and your family!