This will be “short”… but I’ll update, or, add to it as time goes forward
About the middle of March this year, this writer, Bill Ford, and Founder of this JoshuaTreeStar.com was stricken with what turns out to be Stage 4 Lung Cancer in my left lung. After nearly 4 months and 3 different hospital admissions, I finally have gotten through most of the government’s red tape and am now, finally, being treated as an “out-patient” with Chemo therapy. I had my “first” treatment a week ago – July 30.
There are a lot of details about this deadly disease… but I’ll not expound on “it” as much as I will elaborate on resources that are available — but only to you who know who to contact, when, where and “who to contact first” to stay out of the red tape that could indeed be the supporting cause of what’s killing you.
Right now, I’m “staying” at a friend’s home in Indio which is about an hour’s drive from the well endowed Cancer Center. Of course, I don’t drive myself… the pain meds are narcotics which preclude any such operation of a motor vehicle.
Considering it’s now about 10 to 9 p.m. Wednesday, Aug 8 and I’m getting a bit tired and weak … I think I’ll go hit the snore shelf and continue this dialogue tomorrow.
Well, I didn’t get to “tomorrow” in a condition or state of mind of being a creative writer. Today is September 20, 2012. I’ve had a total of three chemotherapy sessions. Being “hit by a Mack Truck” didn’t really materialize as warned about. It was (and remains constant) more like getting hit with a VW Bug at slow speed. Constantly weak, little to zero energy (very likely a deficiency in electrolytes) which tells me I need to drink more Gatoraide and more “other” fluids to stay well hydrated.
In March I weighed right at 160 pounds, standing nearly 72 inches. In less than 2 months I dropped down to 123 pounds — wow…. that’s a loss of nearly 40 pounds!! My butt turned into nothing but bone under the skin that just hung there in unruly folds. I had to buy a “donut” (a molded foam cushion with a “hole” in the middle to allow the tail bone to settle into and not on a hard surface like a chair) thereby preventing “decubitus” (open wound bed sores). Fortunately, decubitus did not occur and I was spared that painful condition. I still use the Donut just in case.
Each chemotherapy session must be preceded with a blood-draw (at a local lab) who sends the CBC (complete blood count) to the Cancer Center the day before the chemo session. This allows the Oncologist the opportunity to view the lab results prior to setting the chemo regimen to “fit” the body’s current condition.
The chemo is a chemical given through an IV (“eye-vee”) generally in the arm. The IV drip will last about 3-4 hours depending on how much of what is being administered in that one session. The chemo functions to kill off both red and white blood cells in the area of the malignant cancerous tumor, thereby depriving the tumor of nutrients absorbed from the red blood cells. The trick is, staying hydrated well enough to ‘flush’ the dead cells out through the bladder and allowing new red blood cells to emerge. Red blood cells are actually manufactured in the marrow of the bone structure.
Of surprise to the doctor (the Oncologist) was a weight gain in a matter of under 4 weeks from 123 to 136. I must be eating lots of fatty ice cream. Another surprise is the lack of the usual “pain” cancer patients generally experience. My pain level is at a “zero” level. Although there were, at the onset, a couple weeks in which I had to wear a morphine 3-day patch AND take 15-mg morphine tablets to mask the severe pain conditions about my left lung cavity area. Well, that “pain” has disappeared entirely.
Now comes an experimental situation via AMGEN – a highly respected and well known pharmaceutical company. The study is extensive. It’s title is:
“A randomized, double-blind, placebo-controlled Study to evaluate the long-term safety and efficacy of Darbepoetin Alfa administered at 500 micrograms once in each 3-week intervals in anemic subjects [patients] with advanced state non-small-cell lung cancer receiving multi-cycle Chemotherapy.”
My chemo sessions are “every 3-weeks”, consistent with the above Study intervals. Given that my present medical condition (based on specific numbers and lab results) meets Amgen’s critical criteria for being included in their double-blind study (67% patients get the drug, remainder get a placebo (a fake drug)) to learn the exact results of how this drug affects the growth of new red blood cells in the marrow of the bones. More red blood cells results in less patient fatigue, slightly greater energy levels and mentally, greater tolerance for the chemotherapy itself. The Amgen drug is, in this usage, a “red blood cell accelerator”.
This Amgen study is 100% funded by the pharmaceutical company and not one dime is subsidized by any government agency. I have the 25-page “Consent Form” and have seriously considered joining the others already in the study. If I get on the 67% side who actually get the drug, perhaps it will enhance my situation — and who knows, maybe even beat this cancer after all is said and done.
My next chemo session in Palm Springs is October 4, another “all-day-session”. Do I drive there on my own? No. I am considered to be 60% house-bound which means I have to have someone take me to my medical appointments and any other “shopping & post office runs” I might need from time to time.
Yes. Discharged back in 1957 from the Navy Air [jeeeeze... that was more than half-a-century ago!!]. Do I get Veteran’s Medical Benefits? NO. I just got the letter from the VA yesterday (Sep 19, 2012) indicating my retirement income is greater than $26,902 per year which disqualifies me from any medical or dental benefits. Actually, I’m not “disqualified” — the VA is not taking “new applicants” who are in Category 8, the lowest health care priority (I’m in Cat 8 due to annual income) and I’m put on the “on-hold-list” of more than a quarter million “new applicants” on the ‘list’ already seeking medical and/or dental benefits since January 17, 2003. To “qualify for Category One, the “highest priority” to receive health care benefits, one’s income cannot exceed about 6 thousand per year (!!).
For you who need to know more, I published the full contents of the “denial letter” under the story title VETERAN DENIED MEDICAL BENEFITS.