Friday, July 22, 2011

Between trepid and intrepid

After using the word trepidation last blog, I had to use the dictionary. Trepidation is: "a nervous or fearful feeling of uncertain agitation". Trepid is: "timorous or fearful". Trepidant is "timid or trembling". So then of course, we have timorous, timorsome, and even timoroso. So it would be accurate to say . . . . a few days ago I had trepidation and looked trepid because I was trepidant. I could probably replace those words with timorous, timorsome and even timoroso, but they all left me wanting to go to Timor, because I was not tumor fighting intrepidly. Sometimes that is how my mind works - I have trouble following it myself.

Anyway, last Saturday, Sunday and into Monday, I felt pretty shaky about getting the new drugs drained into my arm on Tuesday. Somewhere in there however, I started talking and found the honest realization that I was scared sh*****s about what the drug Torisel would do to me. In my head I was already running out of TP, jumbled in the brain, having heart attacks and drooling on myself. Is that called projecting? Fortunately I remembered about prayer, meditation and sharing with another human being. Oh yes, going to the Bob Dylan concert Monday night helped too.

So by Tuesday morning I felt okay about sitting in the infusion chair for an hour or so at 110:30am. Turns out it required 4 drugs and 3 1/2 hours. An antihistamine against allergic reaction, some sort of nausea prevention, the Avastin to help cut blood supply to tumors, and lastly the Torisel. Torisel is hopefully good at being a "targeted therapy" hitting the bulls-eye of poisoning only my tumors. Realistically it is probably more of a shotgun aimed in the direction of the tumors.

Now it is Friday, 3 days after the infusions. My throat is a little sore, and my voice is raspy (Avastin side effect) and maybe extra achy, but I call this a "10" compared to how I felt two months ago. Maybe the side effects of these drugs will gradually increase, but so far, so good. Maybe I can ride somewhere in between trepid and intrepid, trusting God and talking with you. Thanks.
Bill

Saturday, July 16, 2011

Technology for her birthday

Yesterday was my youngest sister's birthday. She died a few years ago and I miss her. But we got together and sang happy birthday - my Mom, brother and two sisters. We did it on Skype, over the internet in a 5-way conference call. This wasn't a plan, but just unfolded as we added each other to the call. It was technologically amazing yet so simple to do. We didn't have the video Skype offers, but I think we all could see Robin on that call. Happy Birthday!

I have been on vacation from chemo for two months and felt great for a few weeks. However that last 10 days or so I have felt more tired and just out of it. I do still have cancer and it is time. So my next drug infusions begin this Tuesday. The Torisel I will get every week, Avastin in addition every 14 days, and add in Zometa for my bone lesions once a month. This combination is supposed to stabilize and slow tumor growth until something better comes along. Trepidation, that's my word of the day.
Bill

Saturday, July 9, 2011

Strategy

May the 12th. That was the last little white pill of poison chemo intake. Nothing since then; two months. I had a scan 10 days ago that says I have new growth and so it is time to make a move of some sort. Strategy.

Since 5/12 all of the side effects have gone away or at least decreased. I am still short on stamina, but much better. I still need to take high blood pressure meds. My hair is growing where it was just breaking off. I just now pulled an inch long sprout out of my right ear. Some arm hair and even eye lashes are going wild; making up for lost time I suppose. Acne-like skin rash has cleared so I no longer compare notes with embarrassed adolescents. My equilibrium is back enough to ride my bike, and I can feel safe driving most anytime. My appetite is back with a vengeance - 12 pounds to the belly in 8 weeks.

After 2 yrs of $850 COBRA premiums I now qualify for Medicare and I signed on with the CIGNA version. Looks like the out of pocket medical will add up to less, but paying my portion of the drugs could get crazy.

I checked out two drug trials in California, but the energy/expense of that weekly travel is just not feasible. There is a possible trial here but not yet up to speed. There may be a c-met drug trial coming to NIH where I was before, and they would take me back. C-met inhibitor is a drug category that hold the most promise for now. However, c-met drugs are not yet available. One of them has been throiugh trials and has shown strong results for PRCC. BUT WE ARE NOT ALLOWED TO HAVE ACCESS TO THAT DRUG CALLED XL880 FROM THE PHARMACEUTICAL COMPANY CALLED GSK. It is not yet approved by the FDA, and GSK will not make any money on it, so it may never be available, even if it is the last house on the block.

The drug I am looking at taking now for the short term, is an mTOR inhibitor called Torisel. It has a list of side effects. The word 'constipation' follows the word 'diarrhea' on the list, which seems humorous to me but there is nothing funny about some of the other words. However the odds are good that drug will keep my cancer growing slow enough to buy me another year or two, hopefully something better will come along by then. Problem is that I will feel pretty crappy for that year or two.

Jacki and I had a tearful heart to heart about strategy. It has been wonderful these past two months of feeling good and maybe it's best to stay off the drugs and squeeze out the highest quality of living possible as long as possible. Still, that leads to faster growth and increasing bone pain and then coughing up blood as my cancer takes me down. What if the discomfort of an interim drug does help me hold on until a medical solution evolves? If it does then great! If it does not then . . . I have a leak in both eyes, so I'm gonna stop for now.
Bill