For those of you who read last week's post you know I was in a bit of mourning early last Wednesday. Well it turned out that the rest of the day was also a bit gloomy. I had my blood tested that Tuesday to determine if my Lipase had dropped back to a normal range. This test takes time and so I do it the day before my chemo. My clinical trial coordinator contacted me Wednesday morning letting me know that I was 10 points out of range and that I needed to get tested right away to see if it had dropped in 12 hours (possible, but pushing things). I rushed down to the UW hospital to do blood work and wait. Not an easy thing to do when you know that the trial that has been working for you is possibly going to drop you from testing and also struggling with the loss of a good friend. Luckily my sister Kendra was able to meet up with me for coffee and a stroll along Alki beach. We talked and reflected on Mike as I tried not to check my email every five minutes for a message saying that my blood work was good. That email never came.
Later in the day at my doctor appointment I was informed what I feared, that my blood work had made me ineligible for the 4th week in a row, disqualifying me from further treatment on the trial. Times like these are tough, knowing that you have no control over the happenings crashing down around you. I have learned to let go and not reach for the unattainable reins. This doesn't change the hurt but it does help soothe the anger and confusion and self loathing that don't help. Phase one trials of drugs are strictly regulated and so there was no negotiation of staying on the trial or getting the drug otherwise.
Of course my team always has a plan. In fact, this may even be a good thing. Although I was responding well to that trial drug, it and others like it have never shown what they call durable or long lasting results. It is possible that the drug had worked for me as long as it was going to. Getting off of this trial can make me eligible for others, like the immunotherapy trial that we had been eyeing since my last recurrence. It opened in late July with hopes of filling in about 18 months. Turns out it is on pace to close in November! At that rate, me staying on the last trial for two more months it would close and I may never have the opportunity to try the drug. This way I get a few weeks off with no poking or prodding and will return in late October for another scan. Based on those results we will coordinate our next plan of attack. Curiously it places me in another catch 22: if it grows I can get onto the new trial, if it continues to shrink Hooray! but no trial eligibility. So I am almost hoping the stupid tumor has a tiny bit of growth as this immunotherapy drug has shown very good durable results. Honestly I am not sure what to hope for. In the meantime I am looking to relax and recharge from the physical and emotional roller coaster of the past few weeks.
For those of you who knew Mike, his good friend Craig had some excellent words to say about him that were posted on Mike's blog. Mike's memorial is Saturday, September 27th 2-5pm at Elephant’s Delicatessen, The Corbett Room, 5221 Corbett Avenue, SW Portland, OR.
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