Wheel of Fortune

Last week's scheduled evaluation led to a pass to the next round of the clinical trial, so I made the next block of hotel reservations, and prepared to return to Cleveland this Monday past for the first treatment of Round 8. My friend and sister M volunteered to drive so we could catch up after a couple of weeks without time together. Last Friday I settled down on the couch with Marmaduke and my knitting to watch the Opening Ceremony of the Olympics, and realized to my horror that I couldn't comprehend a simple pattern and translate it into knitting stitches.

Then I tried to make some written notes on a photocopy so I could reduce my planned project packet to a more manageable size and leave a book behind. I couldn't write in a straight line and I couldn't control my handwriting. By this time I was thoroughly spooked, and sent an email to Dr. G to notify him of my concerns. As I was heading up anyway, we scheduled an additional appointment for an MRI of the brain, something that we hadn't done for some time.

Late Monday afternoon we completed the scan and returned to Dr. G's office for the results.

I am now off the clinical trial, as we discovered several lesions on the brain with attendant swelling that was causing my cognitive problems. I was immediately admitted to the Cleveland Clinic Hospital to start steroid therapy to reduce the edema in the brain, and for consultations with neurology and radiation oncology specialists on Tuesday. M's husband the valiant Mr. C battled a raging snowstorm to bring Saint H and sister C2 to Cleveland. We traded family members, and Saint H and C2 settled in at the hotel for the consultation results.

Tuesday I spoke with neurosurgeon Dr. LA and radiation oncologist Dr. Sam C, and we charted our next move: I'm scheduled tomorrow, Thursday, for a gamma knife procedure, an all-day funfest starting at 7:30 a.m. and ending who knows when?

I'm comforted to know that Cleveland Clinic has been doing this since 1997, and Dr. LA has done some 300 procedures and works closely with RCC patients. I'm surprised and somewhat startled that this is done on an outpatient basis - I stayed in the hospital on Dr. G's orders to avoid having to go home and return in a snowstorm and to get started on therapy as quickly as possible. I was discharged, moved into the hotel, and have enjoyed the time intervening with my dearest boy and my dearest friends.

I miss my cats, I miss my house, I miss sleeping in my own bed. I expect I won't get home until Friday due to the observation period required after the procedure.

I don't know what comes next. I consider myself lucky - we were able to take quick action and I'm in excellent hands. I know several folks who have gone through the procedure and done just fine, and I'm expecting to do just fine myself. I'm not looking forward to the expected headaches and the imposed immobility for however long the procedure takes.

I know the chances of survival with good results from this procedure are impressive; as I told Dr. LA, "I like your odds for me better than mine."

So I hope soon to be able to tell you what this turn of the wheel involves. Spare a good thought for me.

Little Ol' Deviant Me

Well, I've been busy since the last posting. My computer is now fixed (fingers crossed that it stays that way). We've completed the first 3 treatments on the clinical trial and I've not had significant side effects to date. However, last week we ran head-on into one of the "things one signs on for" in agreeing to a clinical trial.

Every clinical trial should include a contract, of sorts, between the trial and the patient. I signed one which outlined the side effects, documented the intent of the trial, and specifically stated what responsibilities I have as a participant.

Wednesday afternoon, in the midst of terrible storms and changeable weather, I had a terrible migraine. Later in the evening I developed a fever of 101.2 degrees. I thought to consult the document I'd signed and, lo and behold, I was to call in and report to the Cleveland Clinic for further information, if I had a fever over 100.5 degrees. The oncology fellow on call directed me to go to an emergency room, so off we went to OSU ER, at about 11:30 p.m. After consulting with the Cleveland Clinic, the ER docs bundled me off to the James for admittance, where I landed about 3:30 a.m. At Cleveland Clinic's direction I was placed on an IV course of antibiotics and settled in for the results of blood cultures.

By the time I was in the James, my fever had gone, but we had to wait for 24 hours for the results to come back. I was finally released after observation and constant dosing on antibiotics on Friday afternoon. I now have 4 new antibiotics on my drug sensitivity list, woo-hoo!! Basically they could find nothing wrong with me (I'd suspected that all along, since I have a history of reacting badly to weather changes).

On Sunday I went off for a haircut and lunch with friends. Later that evening I got violently sick to my stomach; I offer no details but it was distressing and unpleasant. I had no temperature and was finally able to sleep once the vomiting was over. The patient contract said to call in if more than one episode of vomiting occurred during a day; I figured it was essentially one long episode and decided I wasn't reporting in.

On Monday morning I called in to Nurse Vicki, told her that I'd had vomiting the day before and was feeling okay but didn't really want to make the trip up that day; would that invalidate my trial participation? She said, "I'll just note this as a deviation, that you didn't come in for your appointment, and I'll see you on Friday for the screening tests."

So now, I'm a deviation from the standard protocol. I'm glad that I didn't get bounced off the trial for missing my last appointment of the cycle, and I'm glad I don't have to make the weekly trek anymore. Let's just hope that the screening tests go well on Friday so I can start treatments again next week.

What Goes Around, Comes Around

Friday night Saint H went to bed early, saying he was tired. He drives 100 miles round trip every day to work, so by the end of the week he usually is worn out. I didn't think much of it.

Saturday he was up for a bit, then complained of a stomach ache and went back to bed. He stayed there all day, occasionally getting up to try to go to the bathroom, sometimes fevered, sometimes chilled. He eventually ended up pacing the living room in obvious discomfort. Couldn't I call the hospital? Oh, no, he just had a stomach ache. Was he sure that I shouldn't call the hospital? Upon reflection, he decided that I could. He hadn't eaten since noon, and the pain was centralized and steady.

Fortunately our doctor, Dr MC, was on call. After talking with me and with Saint H, his verdict was, "Get to the ER. This could be diverticulitis or worse." So, off we went. Saint H told the nurse that his pain was, oh, maybe a 2 on a scale of 10. I told her not to believe him; she said, "You are obviously in pain. I'd rate it between a 6 and an 8" and went off to get pain meds.

After a couple of hours and an x-ray, he was set for a C/T scan. We are, of course, familiar with the 2-hour ritual of taking the internal contrast; he tried to get me to go home. I told him I might as well stay to find out what was going on, right? (Gosh, he doesn't like Readi-Cat any more than I do! What a shock.) When the results came in, the ER doc came in and announced, "You have appendicitis. We're admitting you." Saint H responded, "You're kidding. Right?" "Nope. It's very inflamed. We'll be getting you in to surgery as soon as we can."

By this time it was about 3:00 Sunday morning. He tried to get me to go home again. I told him I was going to stay until he went to surgery and returned to his room. At noon, he was on his way to the operating room. He was back in his room by 2:30 or so, and I went home for a nap. I got to bring him home Monday afternoon, with his 3 little incisions from the laparoscopy (in face of my 14" scar and my 8" scar, I find that pretty annoying).

Funny, all these times that I've been in the hospital I've tried to get him to go home, and he's stayed in spite of me. I've told him how frustrating it is to know that he's uncomfortably perched in a chair watching me sleep, but I know he didn't understand until now.

God knows I now understand that compulsion to stay, to watch him sleep and heal. I could not live without him.

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.

The Years Fly By

Last night found us at the Wellness Community's Renal Cell Networking Group meeting. On the way home, I remembered that I missed last year's March meeting because I was in the hospital. I've gone over a year without being hospitalized!

That might not sound like much, but here's the summary for the last few years:
2004 - 4 stays (surgery and complications)
2005 - 8 stays (treatments, complications and drug reactions)
2006 - 2 stays (drug reactions)

Each stay was for a minimum of 3 days, and 5 lasted over a week. I was basically out of it for the first couple of days of each stay, surfacing gradually to full competence and boredom in the last days. I started keeping non-challenging, small knitting projects packed at the ready in anticipation of those last days.

I became expert at dancing my IV pole all the way to the hospital gift shop to pick up magazines and newspapers. I got to know some wonderful hospital employees. I spent a Fourth of July, a Christmas Eve, and my 15th wedding anniversary in the hospital. With all that practice, I got to be pretty good at coping with it. But, guess what - I haven't missed it at all!

Thoughts On The Solstice

On December 21, 2005 I nearly bled to death internally. I was getting ready to drive to Columbus for an appointment with Dr SC and suddenly started vomiting blood. I called Dr G's office, Dr SC's office, and my friend Mary who came by and organized the trip to the ER. Funny how snatches of scenes come back; I recall the ER staff unsuccessfully trying to insert an IV in my carotid artery ("Just turn your head, honey, keep your head turned, it's not going to work, BP's down to 74/37"). I remember trying to wave to Saint H on the way to the lifeflight 'copter. I remember being enveloped in a blessed hotpack when I got to the ICU. Everything else until I woke up the next day is pretty much a blur, or completely forgotten; and that's probably good.

Solstice: That shortest day, and longest night signalled the rebirth of the earth to ancient civilizations. It won't pass for me without thinking of my own second chance.

Yesterday I attached shanks to glass disks, to serve as buttons on a vest I designed for my niece. It involved superglue. Yes, I glued my fingers together. You'd think I would know better.