Date: Fri, 17 Sep 2004 03:22:58 -0400
Subject: An update...
When we agree to sign a contract to purchase a home, we know that we will be making a payment every month of every year for 20, 30 or more years. That's if we don't fiddle with things. You know what I mean. Refinancing just to bail our butts out of a self inflicted mess.
Similarly, purchasing a vehicle, new or used, requires us to stick our necks out, or exercise our faith in our future ... and commit for a prescribed period of time to pay incrementally for the use of a source of transportation. If you read the fine print carefully, for the most part, it is "cut and dried". The quality of the vehicle you picked and whether it will last the entire contract is where your neck's vulnerability and your faith ... face off with each other.
When it comes to ongoing medical care there appears to be no agreements or contracts where one feels as if there is guaranteed progress being made towards an end.
After five chemo treatments, I kept thinking I was near the end of treatments just because the doctor says there would be 6 treatments. Not so.
Once I had experienced one complete cycle of outpatient chemo and it's side effects, earlier this summer, I figured I could handle it. To me, a complete cycle is from the start of the treatment (whether a day or a series of days) all the way to just before the next "start" of a treatment. The period of time right after being released from the clinic as an outpatient (3 to 6 hours of treatment) or ... the hospital as an inpatient (4 to 6 days of treatment) can be from two to three weeks before another treatment is scheduled. At least mine is.
This time period is when the side effects make their presence known. The list of possible side effects is almost too long to type so I won't. Extreme fatigue is the most notable ... unless you are experiencing nausea. Then I guess nausea would certainly be more in the forefront of one's mind. Some of the drugs suggest side effects of constipation and diarrhea. How those two can be listed in the same sentence was a puzzle to me until I had the experience. Like the swinging of a pendulum, the two side effects ravage me for days, every cycle. Toss in the aforementioned fatigue..., some "long bone pain" from the over workings of an injected drug administered to stimulate the bone marrow to speed up blood manufacturing to combat anemia..., shortness of breath, the heart pounding for no reason, and the fact that every single little "ouchy" tends to get infected, starts to add up. Every day becomes a swim in Lake "Me".
I did realize there would be accumulative effects and they would have to be dealt with. It seems that just before another treatment, I tend to feel at my best. Not my very best but the best I can expect. The effects of radiation or chemotherapy tend to leave one feeling a bit worse than the last cycle. I noticed this each time but all in all, I felt I was up to it by the time the next treatment was scheduled.
But, believe me, I don't take it lightly. There is a degree of fear, and trying to muster the courage to go in for treatment is difficult when there is a certainty of experiencing fatigue, nausea and pain for days at a time. Tears might be shed. There is a feeling of life not being fair.
When there is a change in the course of treatment, it leaves you wondering. Half way through my series of chemo treatments the doctor suddenly changed my schedule from this nice outpatient series of treatments ... to ones which required me to spend days in a hospital, enduring round the clock administering of drugs and other "pokings and proddings" usually inflicted upon me by nurses.
Nurses... ahhh! Angels of Mercy? ... or Inflictors of Torment. Definitely their services are necessary. All I know is there are three shifts of them coming to the hospital, showing up like fresh troops. Before the tired troops pass the baton on to the next shift, they are comparing notes called 'taking report'. As a patient, one does not get to refresh much. You tend to feel as though you are "pinned down" in a firefight. There is always one coming in, moving the curtains, asking too many questions, disturbing my erratic sleep or my attempts at bathing or toiletries.
At 11 PM and 1 AM I'm awakened to be given pills. At 3 AM someone from the lab comes in to draw blood. I'm too tired to ask why they want to draw a sample from each arm. Isn't it all the same? It makes no sense and seems to be a painful dream but in the morning there will be more bandages on each arm.
They want to weigh you at 4 AM and when I protest that I will still weigh the same at 8 AM they just roll their eyes, holding the scale in front of me which looks more like a big handtruck with a digital readout on it. Just after drifting off again another nurse-type will come in and check my blood pressure and temp.
They will bring you food, then ask why you didn't eat it. They will ask why you haven't "peed" enough and why you aren't drinking enough. I was asked if I'd "pooped", "poo-pooed", "had a movement", or, "moved my bowels" at least once a day by various nurses. Imagine one of them opening the bathroom door just as you've settled onto the throne, attempting to relax a bit. Suddenly seeing a 350 LB nurse at that indelicate moment does nothing to aid in the attempt. They have free reign and appear to be calloused to private moments.
When an even larger nurse comes to your bedside, you start to get the impression that they find new nurses at the Stockton shipyards and that that there is an over abundance of stevedores, or Lumpers, as they are known in the trucking industry.
When she asks if I'd like to get cleaned up, I hesitate. Mostly because I was trying to read what her tattoo said. When she offers to wash my back, I'm too afraid to say anything to stir her to anger. I submit, fearful that she is still so fresh off the docks she may treat my tender backside like a big crate on the dock needing to be moved, have some paint stripped or a sticker removed.
Then occasionally there is the nurse ... fresh off the banana boat. Communication, no matter how simple, is a problem. I worry about them reading things correctly. A young Hispanic guy, Raymundo, comes in to ask me some questions. He's dressed like a male nurse and his credit card sized name tag offers enough info that he has earned some capital letters to be placed after his name. I think about how hard or easy it is to get a fake name tag with fake letters after the name. It's not hard to picture him wearing a huge Raiders jersey and a bandana, short pants that end at the calf and some $200 sport shoes. There is a whole list of things that the hospital wants to know about me and my medical history and Raymundo is here to extract it from me, one way or another.
Raymundo is new to America or at least the English speaking North American continent. He is probably as articulate in English as I was in high school Spanish, where I was very fortunate that the Spanish teacher, who was also my baseball coach gave me a token C grade inspite of the fact I probably didn't deserve it. It was the only way the teacher could keep me on the team. He really needed a third baseman who could also pitch middle relief, if necessary and by the end of the season was batting .411.
Anyway, Raymundo kept stumbling over the words, pronouncing (or "slaughtering" is another word that comes to mind) this list of medical history terms. Did I wear eye glasses? Did I wear contact lenses? Dentures? Pacemaker? Any major surgeries? All said with a heavy, broken accent. It reached it's peak when he was asking me about my hair piece. Almost with the frustration of someone attempting to use bad sign language, I was telling him my hair was gone because of the chemotherapy and I could grow a fine head of hair normally. Again he asks about a hair piece. Again I try to explain about chemo. After he asks for a third time I realized he was asking about ... "HERPES". Sadly, by the time Raymundo is done asking (or axxing) me the list, my blood pressure has risen and I'd like to throw him out of the room.
My most recent stay in the hospital started the day after Labor Day. I was expecting to stay for 6 days, just like the last time, which would have kept me there until that Sunday evening. I was admitted at 2 PM and was not even hooked up to any drug until 9 PM. Seven wasted hours. They didn't even send in my dinner. Missing a hospital meal is something to feel fortunate about, so no great loss but I'll never get that seven hours back.
Wednesday evening until Friday afternoon was my most nauseating experience yet. There was no eating during those days and in fact the very smell of food could set me off. As he does every day I'm in, this Friday afternoon Dr. Mehdi came in to see me. He said there was no reason to stay another day and I could be released that day as long as I took the last of my chemo in pill form. I was thrilled but as we talked I mentioned this being my last treatment.
He said," Oh no, my friend. You have many treatments ahead of you." I was stunned. Many? How many? I thought there were going to be six. I distinctly heard the number six.
He said we could talk more about it at the next office visit which we set up for the following Wednesday. He said we'd also talk about the transplant.
"TRANSPLANT?!?!' I asked. My mind races to think about which organ might be aching and therefore failing. Kidneys? Liver? The side effects info even mentioned heart damage from the drugs.
"Yes. Haven't I mentioned the transplant?" He asked. We discussed bone marrow transplants for just a minute.
The entire weekend, my imagination was going crazy about bone marrow transplants. I'd had a bone marrow biopsy that I'll never forget. My family and many friends all were more than willing to offer themselves for such a procedure in my behalf.
Wednesday, Dr. Mehdi explained that I'd be most likely going to Stanford or UC San Francisco for the transplant(s), or at least these institutions would be involved somehow.
I said there was a long line of family and friends willing to submit to a donor program. He said that was not exactly what was in mind. He said the problem with others donating to someone in my condition is that 3 out of 10 recipients of such donations are dead within a month. Not the donors, the recipient. That's not very acceptable numbers to me.
Dr. Mehdi said we'd be trying a "RESCUE" of my own bone marrow which would be removed and cleaned. Then I would receive very heavy doses of chemo in an attempt to kill all my existing bone marrow. Then my own, now "cleaned" bone marrow would be transplanted back into me. Hmmm.
I asked how good the process was of "cleaning" my already infected bone marrow. I believe he said it was 'pretty good'. I can't remember his exact word. I wish I could.
Dr. Mehdi scheduled another dose of outpatient chemo at his clinic for 8:30 AM Monday the 27th of Sept. Then the next day, the 28th I enter the hospital for the remainder of the week. More good food ... sassy nurses ... hospital roommates ... and memories.
I haven't mentioned the people that I share the room with. No matter how bad I have felt during my stays at St. Joseph's in Stockton. Whether it be late at night, midday, or in the wee hours of the morning. Hearing the moans and groans of my roommates helps me to realize that no matter how I feel, at least I don't sound as bad as things are in the next bed. For that, I am grateful.
Apparently, in the Grand Scheme of Things... I am supposed to be learning something during this ordeal. Being humbled for some as yet unknown reason. Maybe so I can have greater insight and compassion into...uh, maybe the suffering of others? I don't know that I am really learning any great, deep, secret of the universe type thing yet. No great promptings except to maybe get my affairs in order. Make another hard run at my genealogy. Have another talk with the non LDS members of my family. Squeeze in another trip in between treatments to see my kids.
I will say I have managed to cultivate an incredible assortment of supportive friends over the years. Many have done more for me than I can ever repay. For this I feel very blessed.
Sorry I just burned up the last 15 minutes for you. Have a great day and hug your family. Do something fun with them this weekend.
Rex
