|
|
|
|
|
|
|
You are welcome to apply any part of this article to your own personal use. Please do NOT publish any part of the article or apply any part of it to any non-personal use without the express written concent of the author.
It's gotten to the point that I have to take notes so that I won't forget to cover everything when I write my next dispatches. Mostly that's due to "Chemo Brain," but some is due to just having a lot to cover.
Chemo Brain, by the way, is just that reduced functionality of the mind that's caused by the chemotherapy. It seems like my vocabulary is reduced to about half, and that my memory lapses are more frequent than normal. Without lists of things to remember I'd be lost. The only problem is to remember where I put those damn lists when I need to write something down, and then once I find them to remember what it was I wanted to write. Then there's the problem of remembering to read them when something I was trying to remember... Well, you get the idea.
By the way, I'm writing this in a lot of disjunct sessions, each working on a different section. Many sessions were in the wee hours of the morning when I couldn't sleep. Some sessions were short because there was little energy at the time. And the order in which the sections were written is not the sequence in which they appear here. Consequently this dispatch is a bit scattered. I'll try to do some wordsmithing to do it justice before posting, but cannot promise from the point of writing this particular paragraph.
The day after my infusion stopped I went into the Seattle Cancer Care Alliance (SCCA, website: www.seattlecca.org) for an injection to boost my white blood cells. Maybe I've mentioned this before in prior dispatches, but it bears repeating here. This shot (Nulasta) is supposed to help in the production of neutrophils which really get clobbered by the chemotherapy. Neutrophils are those white blood cells that fight infections. This one shot costs about US$3,000. It's a slow-release injection so it's given into fatty tissue instead of the muscles or blood to even out its release rate. There's another version of the shot that's given every day for about 10 days, but it's so fast that the bones often ache from working so hard to produce the neutrophils. I like this long-acting version, mostly for the convenience of not having to go in every day to get it.
Any place in the body where's there's some fatty tissue is a good place for the shot. Mostly it's given either in the belly or back of the upper arm (triceps). I've so far elected to have it in my arm. The nurses keep asking if I want it in my belly. Yes, I know there's some excess fat there, but I think it'd probably hurt a bit - my belly is sensitive. This time the nurse told me that it seems to be a guy thing to avoid the stomach shot. Women, especially those who have had swollen bellies from pregnancy seem to have no fear of having a shot in their stomach. Guys, for some reason, universally revolt at the idea. I like to think of myself as being open to new ideas, so this time I allowed the nurse to give me the shot in the stomach.
Ouch! Bad idea.
I was fully aware of every single millimeter of that needle as it went in and stayed in. It hurt! It hurt a lot! It hurt exactly as I thought it would! Guys, think very carefully before acquiescing and getting such a shot.
There's another injection similar to the Nulasta shot, but this one is to boost red blood cells. After a blood test to see what the red blood levels were (I fell just below the minimum), this injection was also given. This particular shot has to be given very slowly to avoid a burning sensation, so it often takes about half a minute for a small amount. I took this one in the back of my arm and I didn't feel a thing. The nurse thought I was joking when I asked her to tell me when she was ready to give the shot. She was half way finished.
The nurse felt pretty bad, thinking that her technique was at fault. I say it was because I have sensitive skin over my belly, and nothing she could have done would have changed that. For all future cases when I have a choice, I will most likely avoid the belly as an injection site.
I want to talk a bit about my weight loss and gain. At the completion of my Nadir Days #2 my weight had dropped a bit. At the completion of Infusion #3 my weight was not only back to normal, it was higher than normal. I'm not sure what any of this means, other than weight can be affected by the chemotherapy and infections that fall out of that. I am not wasting away to nothingness the way some cancer patients do especially just before the end. I guess I'll just have to wait and see how this all ends up at the end of the entire process, which might possibly include two separate lung surgeries.
Before giving the injection to promote the production of the red blood cells the nurse had to draw some blood for tests. If the counts were high enough, no injection would have been given. This, as usual, was taken from my Hickman Catheter. My catheter has two separate ports, a red-tipped one and a white-tipped one. The two separate ports join into a single line that goes into my chest, but in that single line there are really two separate pathways for the fluid to flow - one for each port. The red-tipped port is the one normally selected for a blood draw. This time the nurse was unable to use that port for the blood draw, at least while I was sitting up. She used the white one.
The indication was that a small clot was developing at the end of the red-tipped line. It would stay open and allow flushing when the fluids were to go inward. Backpressure would cause it to cover the opening when fluids were to go back out, as in the case of a blood draw. This apparently happens with enough frequency that it is not a cause for alarm, and there is a simple treatment. A particular anticoagulant is placed in the tube for about two hours to cause the clot to dissolve.
I had a normal blood draw scheduled for Thursday, July 15, just before the expected lowest of my Nadir Days. It was convenient to go in and have the procedure done then, so we added it to the schedule. So now my morning was to be a five-minute blood draw plus a two-hour procedure. No problem.
When I went in the blood test came first. One of the indicators they were checking was my platelet count. If it were too low, the anticoagulant would cause problems and they'd have to wait on the clean-out procedure. My platelets were high enough so we weren't worried on that account.
But the nurse noticed something else. My red blood cell count was low enough that a blood transfusion might be in order. Checking with the doctor, the recommendation was made and accepted that two units of red blood were needed. This would take about two hours per unit. My short morning became a whole day.
But I'm glad I had it done. My arms and legs no longer felt so lead-like. With that transfusion and with the antibiotics I'm taking I just might get through these Nadir Days without exceptional fevers requiring rehospitalization for massive infusion of antibiotics and antifungals.
One of the differences in this cycle is that I am no longer bleeding when blowing my nose. The chemotherapy eats at the mucus linings of the body, including the nasal passages. In prior cycles this would start on maybe the last day of chemo infusion and last until the end of the Nadir Days. On this cycle it hasn't happened at all.
Does that mean I'm developing a tolerance to the "soup?" I don't know. But it sure is easier to breathe.
Some folks are curious as to my physical appearance these days, given the side effects of the chemotherapy. Not much has changed over the past weeks. My fingernails and toenails are strong and still growing - I have to trim them according to my normal schedule. You may recall that I shaved my head before starting this adventure, so I am bald right now. I haven't shaved in a couple weeks (head nor face) and mostly haven't noticed. I've noticed a minor bit of stubble beginning to show up by touch, so I might shave again before the next infusion cycle - we shall see. Much of my body hair is considerably thinner, but nothing seems to have come out in clumps as has been reported by other patients; the thinnest places seem to be where clothing rubs the most. My eyebrows are very thin, almost gone. My eyelashes are very thin; what is there is very short - so short that unless you have a microscope you would have difficulty finding them. My skin is dryer and looks older, at least to my eyes.
But there are other, more subtle differences.
Mostly due to the steroids I have to take to mitigate the side effects of the chemo, I am undergoing an interesting state of consciousness. I'm either wide awake or catatonic. It doesn't matter what time of day or night it is. At night when I'm trying to sleep I can look at the clock and blink, and find that another two hours has passed. And when I'm awake there's no sleepiness anywhere, just tiredness. So when I put my head down for a few minutes because I'm tired, I'll be instantly and deeply asleep. At night it means that I can have lots of time to myself. I can't just lie in bed tossing and turning. So I often get up and head to the computer for some writing, or maybe I just sit and listen to the silence and think deep thoughts on the meaning of life. After a short time I might head for bed to rest my head for a moment. And blink - well, two more hours have passed. Time to get up and...
There're also the hiccups. It's not as bad as it was at the start of this cycle, but it's still there nonetheless. Sometimes they're so strong it's a wonder I'm not throwing up. Sometimes I'll get a dozen in a row, then go hours with none.
Because of the sensitivity in my stomach, I have to be careful when taking the first swallows of anything. I usually have to take something very small, then wait until it gets all the way down into the stomach to see how it'll reach. Hiccups? Gas? Then the second swallow can be a bit larger. It's only about the eighth or ninth swallow where I can eat or drink normal size portions without fear of an objection of some kind coming up from down below.
At least during this entire cycle I've managed to avoid those godawful stomach pains. When they come on, they're positively torturous. I'm now continuously taking medication to keep the production of hydrochloric acid (HCl) in my stomach to a minimum.
Energy-wise, it still takes a lot for me to carry on a conversation, much less cavort about the boat doing my otherwise normal chores. But these conversations are very enjoyable and important to me, so I engage in them. Sometimes the energy fades and I just have to rest. At those times I enjoy being around folks who are enjoying themselves. I may not be taking part in their conversations, nor am I necessarily listening to them. But to have them around is comforting on its own merits. I guess it's sort of like being a kid and not wanting to go to sleep, but hearing the adults in the other room means that all is fine so it's okay to drift.
Most subtle of all is my body sense of temperature. I'm mostly cold all the time. Even out of doors on warm days I'm wearing a fleece coat. But I don't seem to sweat any more, probably the effects of the chemotherapy, so I don't know when I'm overheating. For now I have to guess and remove the fleece jacket when I think I'm getting overheated. I do have to watch this pretty closely as heat exhaustion is dangerous and heat stroke is downright life threatening.
The lowest point in my Nadir Days this cycle found me sleeping nearly 24 hours straight. This started on the eleventh day following the start of my infusion for this cycle, which is how we count such things. This would have been the day when could have expected to go back into the hospital with fevers. I had nausea and a slight fever, the fever not anything to be concerned about. I did take some pain pills as the mouth sores had come back, and might have had a reaction to them. But no rehospitalization.
The next day I was also feeling a bit punky, needing the wheelchair to get from the boat to the car. I had a blood draw that day and nothing was out of the ordinary. Everything seemed to be in the normal range, neutrophil count, red blood counts, sugars... everything. No pain pills that day. Maybe I was just recovering from the previous day.
The day following was pretty good. I'd say that I'd gotten past the hump and have only a nice easy climb back up in front of me.
And NO HOSPITALIZATION! Yeah!
With the end of the Nadir Days comes my energy. At least it begins to rebuild slowly but surely. Today (Tuesday, July 20) was the first time in a while that I could flush my own Hickman Catheter. For those of you who have half-heimer's (sort of like Alzheimer's Disease, but not as seriously) the Hickman Catheter is the line into my chest through which the chemotherapy is infused and from which blood is drawn for tests. It must be flushed on a daily basis so that it doesn't get clogged up. If it does, it's quite a procedure to get it unclogged and might require replacement. Replacement is day surgery, no biggie but still something to be avoided.
Mostly I like Kit to do the flushing. My eyes are too close and my neck doesn't bend in the right direction to do a proper inspection, so it's preferable to have someone else do at least that part. The rest of it I've watched the nurses and Kit as they do the flushing. So today I did it myself and it was actually quite satisfying. Anytime I can take over my own care puts me that much more in control over my fate.
Magically something else happened. Something got switched back on, whatever it was that was off. I experienced this after Nader Days #1, but not after #2. I'm feeling normal. There's no lead in my arms and legs. I don't feel as if I'm ready to crash at any moment. I can drive a car consciously. I'm fully aware of my surroundings. I can smell the salt air. I mention these things because they've been absent for a couple of months. This is the day we've officially completed Nadir Days #3. We're now half way through the chemotherapy process.
Before I go any further, I want to backtrack to the last dispatch to cover a wonderful weekend. We took Volant out over the Independence Day holidays. Kit was the captain. Her brother Keith, who has sailed with us a bit, was crew. I was merely a passenger.
The weather was quite fine, light winds but enough for sailing. I can't tell you how super I feel with Volant moving along under sail, although I was below decks. I have to stay below most of the time to keep out of the way. If my Hickman catheter gets caught in something I'd be in a world of hurt.
We sailed around to the north side of Bainbridge Island, dropped sails then motored through Agate Pass where a large tidal current was running (7+ knots). The pass was wide and there are few obstructions, so it was a relatively easy run.
Motoring past the northwest side of Bainbridge we turned northward into Liberty Bay and the town of Poulsbo. We've come into Poulsbo several times already. The town has a strong Norwegian heritage and even bills itself as a Bit of Norway. The biggest men's service organization there is not Optimists, Elks, Toastmasters or Odd Fellows. It's the Sons of Norway.
In Liberty Bay we found some friends rafted up in a star raft. Rather than tying up in a straight line with one boat next to another, boats back up into a circle and connect stern-to. In a line raft-up, for one end boat to talk to folks on the other end is a significant concern. In a star raft-up, everyone's transom is facing everyone else's transom so there's no problem with talking.
For visiting, a star raft-up is pretty nifty. Drop your dinghy in the water in the middle and every boat is just a few feet away.
Going into a star raft-up is a bit like a Mediterranean Mooring, dropping the bow anchor then reversing into the desired location and tying up. It was a first for us, so Kit asked me to handle the wheel for the maneuver. Keith handled the anchor and chain. We went in, slick as a whistle.
The potluck that evening was aboard a 42' powerboat with room for all. There was plenty of food, but I had some digestion problems afterword. I guess with my food restrictions due to chemo I'll just have to forego all the good food unless I'm familiar with all the ingredients and the cooking.
That evening the city of Poulsbo provided us with some wonderful fireworks. We could see it all from the deck of Volant. It was close enough for us to really hear the sounds as the fireworks blew, but not close enough to smell the gunpowder.
For the next night the raft broke up. Many went down to Quartermaster Harbor on Vashon Island where a local fellow apparently puts on quite a display of fireworks. We went down to Blakely Harbor on the southeast corner of Bainbridge Island. This harbor has an open view of the downtown area of Seattle. For our entertainment that night we watched Seattle's fireworks in the distance, appearing to be maybe three inches (10cm). Quite beautiful, although a bit noisy even in the distance.
A short motor trip brought us back to Shilshole Marina on Monday morning, so that I could prepare for my infusion to begin Tuesday morning, July 6.. All in all, it was a very fine trip and I had the energy to enjoy it.
I did get a visit in the hospital during my last infusion from Kit's sister Melinda. She has one of the biggest hearts I know. When she enfolds you in her bosom to give a hug, you know you're receiving something quite special. I got two that visit, and each one left me more buoyed than the last.
Some of you will have noticed that I don't talk about some things in a usual way. I'm not a cancer victim, fighting cancer. I don't talk about folks dying, I say that they transition. Let me explain my perspectives.
To be a victim is to be at the effect of something, which leaves you powerless with regard to that thing. To fight a thing has the implication that you are a victim of that thing. I am not a victim here. I have some choices in the matter. I have some power here. True, it requires my entire focus to negotiate the path with a minimum of difficulty. For me this is a voyage through an archipelago strewn with hazards. With your help and the help of my medical team I'll avoid them all and get to the other side successfully.
Death seems so final. It's something we will all face at some time. I prefer to think of it as life's greatest adventure, a transition to whatever is next. Let's leave it at that for the moment. With this dispatch already twice the size of any of the others in this voyage I'll have to save further musings on the subject for another time.
Remember the Cancer Conference (check out www.healingjourneys.org.) from the last dispatch? I'd like to cover a few items, one-liners that I recall the most from that weekend.
"Statistics apply to groups, not to the individuals in the group." Hmmm... Quite a concept. If I were to believe the literature, what little there is, on the stage of leiomyosarcoma that I have, then there's about a 20% chance that I'll survive beyond five years. In actuality, that's not my chances, only the statistics for the group I'm in. Other factors will improve my chances, factors that will apply to me as an individual. And part of my job in this voyage of (self) discovery is to find those factors and put them into play.
"The practice of medicine consists of the diagnosis and treatment of disease." That's the definition, often by legal statute. Notice that it doesn't say anything about the patient. Nor does it say anything about healing. Most medical professionals these days, due to their extensive training in the diagnosis and treatment of disease, look to their patients for information about the disease so that they can make their diagnosis and offer treatment. It would seem easier if we could ship the disease off to the doctors so that they could treat it then send the results back to us. If this is to change, it's up to us as patients to put the humanity back into our treatments. When the doctor asks, "How are you feeling today?" don't be afraid to respond with other than the physical symptoms. Maybe "I'm angry today because of how my husband treated me last night at a party" is an appropriate answer. Or, "I'm proud of how my kid did in school yesterday." Or, "I'm worried about keeping my job with all the layoffs at the plant." If your doctor doesn't take such factors in designing your treatment maybe it's time to get someone else.
"The self-fulfilling prophesy." Many physicians, particularly oncologists, hesitate to give a statement of how long they expect their patients to live. "You've got three months, five on the outside. Time to get things in order." That's the kind of statement that patients believe so strongly that it affects their actual survival. It's uncanny how one will live maybe only one day past the three months, or will die at four months and twenty-nine days. So it's all well and good not to make such pronouncements. However the physician is still operating under that unstated belief, which has its affect as well. The doctor is proven right in nearly every case. Yet somewhere in each of us there's the morbid curiosity as to how long we're expected to continue on this planet. I know I am. Dare I ask?
"Talk to the cancer and find out what it's got to say to you. Tell it you got the message and that it can go now." Hmmm... Maybe the cancer is here for a reason. Maybe it'll keep coming back until I get the message. Interesting concept... This poses a fairly complex situation. Apparently for this conversation one needs to dig really deeply. Who gets to do the talking? Who's listening? I need to find out who I really am beneath my identity as a son, husband, father, retired programmer, friend, mentor, sailor... With all the hours at night listening to the silence I have an opportunity to ferret out this stuff. I haven't yet, but I'm working on it. Perhaps I'll muse on this at another time.
"We are the lucky ones." Folks rarely have the opportunity as I do to really sit back and evaluate their lives and to determine what is really the most important aspects of their being on the planet. Even if we never get to the bottom line in that exploration, it doesn't matter. The voyage provides some fodder that makes most other adventures tame. And that makes me one of the lucky ones.
"Who wants to die of cancer?" In fact, who wants to die at all? Of all the humans who have ever been born about 10% are alive today. If you were to take that as a statistic and apply it to the live humans, about one in ten is immortal. In actuality, we're all on borrowed time. We are all going to die sometime. The question is, how? Given a choice would you prefer to die from an auto accident, a plane crash, heart attack sitting on the toilet, gunshot in a drive-by shooting, fall off a ladder, snake bite...? Putting it all into perspective... Hmmm... Cancer isn't so bad. At least you've generally got warning so you can plan your own funeral, have a going-away party... Do it right, your way.
Anyway, there's more to say, but for now, 'nuff said. There's a lot to absorb and I'm still absorbing. From my perspective it's the most valuable conference on cancer that I've attended. As I mentioned last time for any of you in the cancer voyage or any of you caregivers to a cancer voyager, go if you can. I have spoken.
So many folks have written or commented directly to me that they feel I'm some sort of hero, brave, courageous in the face of extreme challenge... Don't get me wrong here. Keep those kudos coming. They do help and are deeply appreciated.
But from these eyes looking out what's so special? I'm only doing what anyone in my position would be doing and can do no other but what I'm doing. Mostly the choices are no-brainers. If I want to avoid going on the rocks or winding up on a lee shore going blindly ahead is likely not the best of ideas. So the choice is really a no-choice. Is there bravery in that?
I look at my daughter-in-law who is also on a cancer voyage of her own and watch as she and my son make their decisions and do their procedures in their own way. Some choices are difficult, sure. Some choices might not be the ones I'd select. But it's their choice and they're looking forward every step of the way.
Once made what's the point in looking back and revisiting the choice? We are past that rock and need to look forward so we can avoid the next one.
I suppose it's a matter of perspective. If you ask a Medal of Honor awardee if he/she was a hero the response most likely would be something like, "I only did what anyone else would have done under the circumstances." I know. I've met a few and asked.
So, who's the real hero?
First, there's my wife Kit. As I write this she's cleaning the bilge, one of the dirtiest jobs on the boat, uncomplaining (except for some mutterings under her breath...), without asking for any help from me because this is the first day in months that I've felt really good. Without her, my rather difficult journey is being smoothed to a nearly mundane level.
Then there are my children of whom I'm intensely proud. They're hewing their own path through the forest, having ended a chain of abuse that's been around for generations. Their own kids are entirely free of any abuse that I can determine.
My late brother Doug is one of the bravest people I've ever known. I was there with him when he stepped into the radiation room to have his bones irradiated to kill off his bone marrow as a treatment for his multiple myeloma. In three days he'd have a crisis and would either live or die. He stood there, head held high, welcoming the opportunity. It worked. He lived for another year. As a possible side effect of the radiation, one could contract leukemia. He did that one too.
My late father overcame hardships of health and dysfunctional childhood. I often find myself using his mannerisms. I look so much like him I know what I'll look like when I reach his age at the end of his journey. And beyond that I'll know what he would have looked like if he lived longer. He surprised me several times confiding in me things that will go no further. He accomplished a lot for his community where he lived for his entire life. His funeral was attended by so many in the community that more than a hundred had to stand outside the church and listen to loudspeakers. When given a chance to say something about him, a child said, "He loved his grandchildren." That's probably the one thing really identifies him in my mind. I miss him. A lot.
My mother, bless her, has been fighting dragons for all of her life. She needs to be right, whatever the cost, even if that cost is the estrangement of half her children. Among many things, she's also been an abuser. Like most abusers it's a learned behavior having been taught it as a child. I haven't seen or spoken to her in over a decade and will likely not see or speak to her again. In her way of being right she ordered me out of her life. I'm sorry her dragons have caused her so much alienation and grief. But she's still a hero in my mind, fighting them to the bitter end.
There's my brother Russell, whom I've not seen or spoken to in almost as long. I have a lot of anger against him from the way he handled me since my sons and I stood up to the abuse. If he wants to talk to me he needs to provide a counselor to moderate the meeting. I doubt I'll see or hear from him again. I suspect he's learned some behaviors from his mother which is keeping him from attempting to reconnect. Yet even he is a hero, making his way through his life the best he can.
I've just started communicating with my sister Kendra for the first time since the schism. It's a delicate time, each doing his/her best to make it work without rocking the boat. From time to time from my perspective she appears to have her head in the sand. But she's also out there doing her best.
There's my dear friend Rachel who also has leiomyosarcoma. She elected to pass the usual side-effect ridden cancer therapies in exchange for having quality for her remaining life. She's been in hospice for nearly a year and a half, pushing the envelope every day. Dear Rachel, you're showing me how to live every day for it's own sake.
My former wife Nancy went through eight pregnancies to produce four children with me (Matthew completed his job shortly before his second birthday), and through it all did her best to maintain a marriage to someone who was far from the best husband in the world. I honor also her husband Bob and her parents Jack & Dorothy who provide wonderful parenting and support for the kids.
The angels, both male and female, on my cancer ward, give it their all professionally and personally so that my trip through this archipelago goes with the fewest incidences possible.
My grandfather Charlie Maben once drove cattle on the Chisholm Trail and may have been an abuser. But when he was in his nineties and approaching life's greatest adventure he showed me how to approach that with the greatest dignity.
And Grandpa Charlie's third and only wife Cordelia who transitioned only recently. She raised a dozen children on her own after being abandoned by her husband. She was probably the most generous, compassionate, giving woman I've ever known. She showed me how giving could be it's own reward.
I could go on with numberless friends and family that I haven't mentioned, extended to a fourth cousin twice removed (yes, Evelyn, that's you). To include you all would require a book, a very large book.
Beyond the above, I honor my countless circle of supporters and well wishers, whether family, friend or acquaintance, known or unknown, who keep me in their thoughts, prayers, intentions... Your support buoys me tremendously.
And you, dear reader. Are you a cancer voyager...? A caregiver? Someone in our wide circle of supporters? A friend of a friend? A researcher a hundred years hence? You know better than I of the extraordinary things you've done in the face of adversity.
There's a greeting often heard in Nepal, Tibet and surrounding regions: Namaste (pronounced: nah mah STAY). It means: I greet the god light within you.
Namaste, dear reader.
|
|
|
|