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.

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.

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…

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.