Renal Cell Live!

Sunday, October 28, 2007

Life's a Trial

... or something like, a clinical trial, that is. I spent two thrilling days in hospital this week for tests and observation. How did this come about?

I felt intermittent chest pains, very minor; but Nexavar has a tendency toward angina as one of its side effects. Naturally, I mentioned this to Dr G and he urged me to discuss with Dr MC. I called Dr MC's office on Thursday. Dr MC's office brooked no nonsense and said, get thee to the emergency room.

At the ER, blood was taken and I had slightly elevated CPK isoenzyme levels. At my request, rather than observation at the local hospital, I was taken to OSU to be in the hands of those more conversant with my situation. I waited for a room to open, then waited for tests and other orders to be given.

Friday morning, I was wheeled through the hospital maze to the Ross Heart Hospital for radioisotope scans of my heart, coupled with a heart stress test. All came back negative, eventually, and Friday evening I was released to home.

Maybe it's like trying to distinguish between the improbable possible and the possible improbable - having experienced one ultra-rare side effect, can I turn my back on the possibility of another one?

We all expect there to be more side effects and reactions from long-term use of the "new" drugs, and it will be interesting to see what these are. It's something akin to living the supposed Chinese curse, "May you live in interesting times." I hadn't planned to be one of those contributing to the scientific literature, so to speak, but I'm glad to be in the thick of it, hopefully for the long haul.

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Thursday, October 25, 2007

Sticking Point

Last week I went through the office visit routine with Dr. SC at OSU. There was the usual scramble to find a parking place, the usual crush in the waiting room, and the usual pre-appointment bloodwork.

This time I had a new nurse, Tina, in the blood draw area - nice but nervous, getting used to the test requirements for oncology patients. Her partners were swamped, as usual, and it shaped up to be a little more lengthy encounter than normal. I don't mind waiting, as the blood draw nurses are friendly and their work is interesting.

Tina apologized in advance - she hasn't worked with many dual lumen Mediports, so would I please bear with her? (Of course I would; not that I saw much choice in the matter). I bared my Mediport site and settled in, watching her unwrap the test materials and clear away the amazing amount of detritus generated by my port flush and blood draw. Some of the packaging looked different but I didn't think much of it.

A couple of minutes later I sat, gritting my teeth, as she worked to maneuver the needles into the lumens. I try not to complain, but did voice the occasional "Ouch!" as she worked. She apologized; I told her not to be tentative. I harbored doubts about her abilities but said nothing to her; she was clearly aware of it anyway. Finally, the needles were positioned and everything proceeded as usual. She called Jeanne, one of her partners and one of my favorites, to watch and make sure she got everything right. Jeanne said, casually, "I heard you squeak, pal. What do you think of our new needles?"

A-HA. That explained the new packaging. Jeanne said, again casually, "We don't like them; they're awkward to handle and we know that they cause discomfort for patients." I said, "Well, I don't like them either. I'm sure you've all voiced your opinion." - nods - "Would a patient complaint have any effect? Because I'll be glad to lodge one." Then, I knew the answer in advance but asked anyway: "Let me guess. These are cheaper, right?" "You got it, pal."

Phone dialled, supervisor reached, complaint voiced. I've been going there long enough that all the nurses know me; know that I am generally pretty cheerful about what's being done to me; know that it takes something to make me complain.

When things like this happen, I want to grab the beancounter in charge and make him sit through the procedure, just like a patient. I want the beancounter to understand how unfair it is for a nurse to feel compelled to apologize and/or look less than competent for no reason. I want the beancounter to feel the difference that a few pennies makes.

We've all had to go through enough as it is - why should some faceless accountant be allowed to add to the overall helping of misery? Yeah, just sit right here, pal, and take it - see how YOU like it, dammit.

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Saturday, October 20, 2007

End Game

I've had little time to spare for lots of things recently, not least this blog. I had a spectacular floater in my right eye about six weeks ago, followed by black spots in my vision. Two visits to the Optometry Clinic at OSU gave the verdict of "vitreous detachment," which could be either the natural aging process or the beginning of a retinal detachment. I mentioned it to Dr. G, who asked that I come to the Cole Eye Institute. Dr. G's office made the appointment for me with an opthalmologist who has worked with other patients whose RCC metastasized in the eye.

Talk about sweating bullets! I watched my beloved former boss at my last job go through 3 surgeries for retinal detachment; I balanced that with the thought of RCC on the march. Fortunately Dr. S at the Cole confirmed there is no RCC involvement, so now I wait for another appointment at the end of this month to rule out retinal detachment. It's yet another time when aging, though not pretty, has its attractive side, given the alternatives.

Two weeks ago my ex-husband committed suicide at age 57. He'd threatened to do it many times during the 10 years we were married, and swore that he would make sure he didn't live past 50. Why he waited the additional years, I don't know; what made him do it, I don't know. I feel numb - it's like my life with him happened to someone else; and I'm full of regret for all the unrealized potential he carried within.

This morning my friend and sister M stopped by to let me know that her nephew succumbed to his lung cancer at 1:00 a.m. He entered hospice last week, wanting only to die at home. He was in so much pain that methadone and Roxanol hardly touched it; when his pain was finally controlled, he simply passed away in his sleep.

I know that's what I wish for - to die in peace, at home, in my sleep. Will I have the strength to achieve it?

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Tuesday, October 09, 2007


On July 21, 2007, I picked up my copy of Harry Potter and the Deathly Hallows. I started reading that afternoon and finished the book at 4:00 the next morning. (No delayed gratification for this girl!)

Later that week I checked Leroy Siever's blog, and was pleased to see another grownup state, in so many words, his appreciation for living long enough to read it.

I never said out loud, "I want to live long enough to read the final Harry Potter book." I lived with a secret nightmare - would I make it to summer of 2007? Would I have enough of my faculties left to be able to read and comprehend the story? And - worse - Would my friends and family think it silly of me to attach that much importance to a darned book?

I thought I would jinx myself somehow if I said it out loud. Well, that's not so much the case now. We all need goals in life. I've known people who express a wish to live long enough to see a child married, or to see a grandchild born. Since I don't have children I have to find other things to aim for. So, here's a few on the list:

I'd like to live long enough to see George W. Bush return to private life
I'd like to live long enough to see Saint H retire
I'd like to live long enough to see multiple horses and some sheep grazing outside the house
I'd like to live long enough to see Emma the Ferguson tractor refurbished
I'd like to live long enough to draw money from my own retirement funds

Hmmm. How about: "I'd like to see the Cleveland Indians play the Chicago Cubs in the World Series."

I would LOVE to see that, but somehow that seems to be asking for an awful lot. Best not to tempt the gods. Besides - I'll always settle for the Indians beating the Yankees.


Monday, October 08, 2007

That'll Larn Me

Madame Monet with Parasol
You may remember our B-17 flight from last year. Last weekend we indulged in another trip back in time with the Gathering of Mustangs and Legends at Rickenbacker Field. Mustangs, a B-17, B-25s, Curtiss P-40s, a P-38, a Lancaster bomber, a Zero ... enough to make the romance of flight come alive for anyone!

It was warm, bright, and sunny. We figured we'd spend about 5 hours there. We took water and sports drinks. I had on long sleeves, long pants, a hat, and sunscreen. I came home happy and tired - and sunburned on the chest, neck and face.

Having burned my arms and hands on September 20 at the annual Farm Science Review, despite long sleeves, long pants, a hat, and sunscreen, you'd think I'd be more careful. I still have a subdural rash on my arms from that trip, and have developed same on my chest from the air show.

Sun sensitivity is one of the most common side effects of the antiangiogenic drugs on the market. I guess I will have to use SPF 50 sunscreen exclusively. Perhaps I'll start carrying a parasol, too - fashion trend, anyone?

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