Posts Tagged ‘Healthcare

24
Jan
13

something on my mind

Last week, in an Oprah Winfrey interview we heard Lance Armstrong, the world-class Olympic cyclist confess to having used several performance enhancing drugs to achieve his string of seven Tour de France medals during the period 1999 to 2005. These medals were stripped from him late last year, and recently the Olympic bronze medal from the 2000 Sydney games as well. Lance is a proud man, a fighter—a winner at all costs sort of person. Oprah did a magnificent job of drawing him out from shadow to full light truth. She did this by offering him kind, compassionate support all the way home. He needed that and she, out of her storehouse of experiences, could give it. I don’t think she skipped a beat.

For two hours I watched and listened to two amazing persons reveal themselves to the world: one a fallen celebrity newly discovering his feet of clay, the other a celebrity interviewer/entrepreneur who has never hidden hers, even from herself. This is a distinction of importance as I look through the pages of my own book of life. I find identity in both areas and I am not at ease.

I am annoyed with Lance Armstrong, not for the doping, arrogant lying and power-driven will to win, win, win, but for the cancer mythology he helped to perpetuate through the LIVESTRONG theme of the foundation bearing his name. The foundation has done good work and raised millions of dollars for research, but it did that based on Armstrong’s own cancer experience turned into the thematic slogan: LIVESTRONG. Many thousands of people carried this message to heart—persons unlucky enough to have contracted the disease, were caretakers for them, or otherwise touched by the disease.

In 1996, Armstrong was diagnosed with late-stage, metastatic, testicular cancer that had spread to his abdomen, lungs and brain. He ignored the warning signs at the early, easily treatable stage of this cancer, common in men aged 15-35. Had his body not been as fit as it was, he may very well have been a statistic instead of a survivor of heroic proportions. LIVESTRONG worked for him because it was his personal modus operandi. People want and need heroes. He was a winner, so the slogan became a word to live by for many, but not for me. I survived cancer and didn’t have the strength to live strong for a very long time. I simply survived. It took many years to overcome the side effects of the treatment, some of them permanent.  I am still surviving. There is a 50/50 chance that my cancer will return at some point. I live with that daily. Is that living strong or living true?

The yellow LIVESTRONG wristband always turned me off. I didn’t know what it meant and still don’t. In the absence of broader knowledge of this disease, responsibility for outcome tends to shift to the sufferer. How does one live strong when the drugs that flow intravenously through the body every three weeks (or less) leave you chemically depressed, thin as a bone, bald as a bat, sick and wobbly as a toddler learning to walk? Does that mean soldiering on through, fighting on through, or what? Cancer is still incurable. Oncology speaks of remission these days, not cure. So, is remission the goal of living strong? Is that what is meant by “beating it?” I don’t know. We see the happy faces of cancer survivors in commercials and advertising. We don’t see the thousands of people permanently disfigured and/or impaired by the side effects of these chemical cocktails, nor do we understand that each recurrence of the disease further weakens the body’s ability to counter. We don’t see the epitaphs of those who apparently didn’t live strong enough to survive. We aren’t ready yet to admit that the war on cancer, started 40+ years ago by President Nixon, has not produced cure. Treatments are better and drugs are becoming smarter, but it is still treatment that will be deemed barbaric some hundred years or so in the future.

I would like to hear another interview where Armstrong takes responsibility for misleading the public into thinking a catchy jingle could make us all strong survivors. We aren’t. If he does this he will be a true leader and a strong advocate. Cancer is still a dark thief riding a dark horse in the darkest of nights for most of us.  Both my niece and my sister lived their cancer as best they could…some might say strong, but the endings were not pretty. After Adopted Daughter died of cancer, I found the yellow bracelet among her things. I recoiled at the sight of it and tossed it out. My loss was too great to even look at the talisman she thought would help her. If I had it today, I’d take a scissor and sever the LIVE from the STRONG. I’d throw out the STRONG and pin-up the LIVE in my studio to remind me of what surviving is all about, at least for me: living authentically, gracefully and joyously.Type Embellishments_H 36pt_white.

Postscript:

1) My personal cancer story, Dying to Live: My Cancer Odyssey, was written in 2007 and can be seen on my website: www.inheritanceproject-2.com – project 5.  2) Reports on Lance Armstrong, the foundation, the interview, other cancer survivor’s opinions can easily be found online. Your comments to this posting are welcome.

14
Mar
11

not a piece of cake-part 2

Update:

Last week I went in for my three-week follow-up visit with the cataract doctor. I’d been having a fair bit of eye strain whenever working on the computer (which is a lot of the time), and eager to get corrective lenses for the new frames I’d ordered a week earlier. I had all of this organized and coordinated to occur as swiftly as possible. (Frames are now referred to as chassis, same as autos—I think lenses are still called lenses. That’s a comfort.)

When I heard the ophthalmologist express concern for my visual welfare because I was now near-sighted in the right eye and far-sighted in the left eye, I began to replay the scenario I’d heard at my first visit. Did I hear this lovely man tell me that the cataract in the left eye was not severe enough to be covered by Medicare…and that was why he was just going to do the right eye? I think I did, but he doesn’t remember saying that. Okay, I can’t push the point because the memory can be faulty in medical situations. He suggested that possibly one of the technicians said it. Knowing how important it is to keep the docs liking me, I assented to this having been the case. Just between you and me…it was not the case. The doc said it and I took it at face value, thinking one eye would be easier than two.

As it turns out, doing both at the same time would have been easier for me in the long run. From surgery to new glasses takes about five to six weeks. Being a forward minded person, I’d set aside this time thinking that the left eye was in pretty good shape and might never need correcting. Maybe it won’t, but there is definitely a difference between the two eyes in terms of color and light…and of course now, in equilibrium as well. The good doctor says he would like to see me in six months to consider bringing the left eye up to speed. I will have to go through this whole monkey-business all over again. This means planning my projects and life so that I have nothing visually urgent during this time and nowhere to go, since weekly check-ups and an eye drop regimen are part of the program.

So this is where I am now: I will pay $700+ for the new glasses and hope my brain will compensate mightily for the split vision. If and when I can figure out when to have the other eye done, I’ll have to get another new pair of glasses. Ca-ching, ca-ching. It’s only money.

24
Feb
11

not a piece of cake

A week ago I had cataract surgery on my right eye. The left eye has not deteriorated enough to qualify for Medicare coverage so just the one eye had its fuzzy lens replaced with a manufactured model (an intraocular lens). I was nervous and apprehensive with memory recall of past medical encounters and uncertainty about the visual future. Despite all of this, and because I had covered all my bases of obligation, I displayed very good vital signs. That was a welcome surprise to me. No one panicking over heart rate and blood pressure. No need for IVs and consultations. The power of prayer and supplication!

While waiting for my 5mg of Valium I had a strong sense of the presence of both my deceased, adopted daughter, Bettina and my sister Florence, there in the cubicle with me. It was a thin place experience. At first their presence was comforting, but after a few minutes I had to ask them to leave and they did. Shortly afterward the nurse popped in with the Valium and there was no turning back. Within a few minutes of swallowing the tablet, I experienced a strange two tiered effect: mellow on the top with an underside of lingering apprehension. Took a while for these two to merge into one, but once they had, I was a lovely patient—agreeable, humorous and trusting.* Even the shower cap was an occasion for joviality. (Those who know me well will know this is not my most common persona.)

*Tip from experience: you get better treatment in the medical system if your doctor/nurse likes you. But if you don’t like them, get the heck out of there.

The doctor poked his head in, greeted me and made some notes. He asked if I was ready and I countered by asking him if he had said his prayers that morning. He replied he had, and since I had as well, we were ready to roll. I believe he said something like rock and roll? To which I most likely replied in the affirmative. (You gotta love that Valium.)

Being wheeled down the corridor to the operating room is a trip in itself, but I was lively and witty and amusing. (I should have been paid minimum wage for this performance.) Once in the OR, lying there like a cadaver waiting to be explored, my apprehension returned. Within moments I felt my sister at my side saying she would stay with me and hold my hand.  Scoff if you must, but this is exactly what I experienced and it was comforting. Do I believe it actually happened? Yes. I believe it truly happened just as the disciples believed they saw Jesus on the Emmaus Road. It may or may not have been factual, but I believe it was true.

The doctor sealed something large and roundish over my right eye and draped the left. I found the whole procedure to be a very strange experience of color, light and sound. Once finished, sight is immediate, but uncomfortable because the dilated pupil lets the light flood in as it hadn’t for several years. I returned home with dark glasses, a Valium hangover, and a number of medications to be dropped into the eye every two hours.

As the Valium worked its way through my system, I felt a bit lost between the thin place experiences and the real world. I lay in an abyss of suspended awareness…neither here nor there…until evening when a good friend came by to take over the eye drop regimen for a few hours. As I talked with him, an avowed, left-brain, linear thinker, I came across to reality-land as though stepping off a boat and onto the dry land we call reality.

The next few days were devoted to recovery and rest. The procedure is essentially painless, straightforward and without serious risks—a piece of cake, people say. The same people do not mention the follow-up weeks, which if cake, definitely are without frosting. Today, 8 days past the procedure, I am counting the remaining several weeks until new glasses sit on the bridge of my aging nose, hopefully loving their new home like crazy and relieving my eyestrain.

In my freezer is some left-over chocolate, chocolate cake with raspberries, walnuts and frosting. This is what cake looks like folks. I think I’ll have a small piece right now.

18
Sep
09

48+ hours later

So much for the immune system replacing those damaged white blood cells quickly! In my case, improvement is slow and painstaking. What I didn’t say in yesterday’s post (what I did while lying down), is that while Rituxan (rituximab) is not a heavy duty (toxic) chemical, it is still a drug developed in a laboratory, and not a natural substance. It has side effects…not horrible like chemo, but not a walk in the park either. At least it isn’t for me.

At this time, there are 5 years data on Rituxan’s use. When I started on it in May of 2007, there were only 2 years data. I’m a bit of a guinea pig because this drug managed to get FDA approval under the Clinton administration without the usual 100 years (just kidding) of testing generally required in this country. That is not to say it had no testing, just that for some reason that I can’t remember, its successful use in Europe, along with some other loopholes in our system, brought approval more quickly. And because of this, many thousands of people have longer remissions and better chemo outcomes. So why am I complaining? I shouldn’t.

As I have gotten older I have become one of those persons who are said to have a delicate constitution. That was not always the case before the  great mid-life shift in age. Perhaps this shift to delicate is concurrent with having had the lymphoma in it’s indolent stage for a long time before it transformed into its large cell manifestation? I just know that somewhere around mid-life, everything started changing and I got delicate. So now, 48+ hours after the miracle drug dripped into my body, I can report that I no longer have bone and muscle pain, heartburn, abnormal bloat, brain fog, peripheral neuropathy, low body temperature, and emotional melt-down. No, I am improving. I am just extremely fatigued, plagued with digestive misfiring, night time neuropathy, chilliness and bad humor. I have put in a call to my trusty homeopathic physician who will help me with these side effects that I couldn’t possibly be having, since the drug is so well tolerated by the vast majority receiving it.

* * * * *

Just spoke with homeopathic doctor X  in the knick of time. I was about to spiral out into the stratosphere! I’m an emotional person. You probably already figured that out.  Back to being grateful for Rituxan 🙂

* * * * *

Homeopathic  Update: 2.5 hours after taking first dose of prescribed remedy, and I am feeling so much better that I’m wondering why I waited so long to call Dr. X. Hope it was stupidity and not pride… 😉

17
Sep
09

what i did while lying down

Yesterday, I traveled to one of the big university cancer research clinics in my area and laid my body down to received a substance called *Rituxan (Rituximab). I do this every 12 weeks, rain or shine, hot or cold, happy or sad, sick or well. Rituxan has helped me to achieve 2.75 years of remission from non-Hodgkin, B-Cell, lymphoma. Unless the CT scans show otherwise, 12 weeks from yesterday will be my last treatment and I will be declared in full non-Hodgkin, B-Cell, lymphoma remission, otherwise known as a cancer survivor.

Cancer is now generally considered a treatable, chronic disease in the oncology world. Remissions, the state in which no detectable cancer is seen in the body, are key. Anything hiding or too microscopic gets a free ride unless, or until the whistle blows. So remission is bedrock for being a survivor. Yes, there are other characteristics, like ingredients in a pie, but this one is numero uno. After that can come any number of poetic attributes, but remission, preferably full remission, is #1. Thanks to the biotech pioneers, Ivor Royston and Howard Birndorf , (were they beamline scientists?) and the companies who market rituximab  under the trade names, Rituxan and MabThera, my last encounter with this product will be 12 weeks from yesterday. (Praise God!)

Rituxan infusions are not a horror story, as is most chemotherapy, but it has its own properties that vary from person to person. Simply stated, Rituxan is a monoclonal antibody that locks onto  the CD20 protein found on the surface of the B-cell lymphocytes. It is also present on the surface of most of the abnormal B-cell lymphocytes that occur in some types of non-Hodgkin lymphoma. Rituxan marks these cells to be attacked by the immune system; however,  both abnormal (malignant) AND normal (healthy) B-cell lymphocytes are marked.  The downside to this double deal is a lowered immune response to colds and such for as long as it takes for the  body to replace the normal white blood cells that are damaged. The literature says this happens quickly. My experience has not been quick. Today I am at 45% of my normal vitality, feeling tired, flu-ish, worn and a glass half empty. I have to be careful not to be around sick people. Last time, because I was already not well before getting the infusion, it took about 6 weeks to recover and I questioned the value of continuing on. Do I say anything to the docs? No, I do not because in their minds I’m better off compromised than dead!  Well, this time I didn’t have anything viral going on, so I should be better in a few days to a week (maybe 2 weeks.)

I sound ungrateful, I know. What I really am is worn out, like I nearly drowned swimming across a muddy river, and now glad to be resting, sopping wet, under the bridge, away from the elements. The heart wants to get on with things, but the brain is foggy and the body parts don’t seem to recognize each other. I’m a merrionette…a Pinocchio! This soap opera will pass and I am a lucky lass to have a great oncologist with a compassionate heart and a warm demeanor…lucky as well to have friends who care about me and pray for me.

I am also lucky to have gotten sick AFTER I’d already gotten into Medicare. Even with the insurance I had as a self-employed person, it would have been a financial wipe-out with who knows what ending. (One CT scan can be 6 or 7,000 dollars. PET scans even more. Rituxan infusions also thousands. Will somebody please wave a magic wand in Washington to get all those “servants” to see the light of day??? This rich country does not now rank very high among the health systems of the world. I personally mourn for an artist friend who died of lung cancer because he had no insurance! He was gifted, brilliant and sending money to his developmentally impaired daughter. I mourn for all those who, against their wishes, are inducted into the cancer club and especially for those who finally must leave their bodies behind to the thief that is cancer. And then there are the families, the friends and the loved ones… Come, Lord Jesus, the tables need overturning.





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