Tuesday, May 2, 2017

And, we move on

From Wednesday night through Sunday around lunchtime, I slept 52 hours, according to my FitBit.  Two nights registered at 15 hours.  I even napped during the days.  I was too tired to even work on Friday morning.  The cumulative effect from this chemo is pretty intense.

But, after some intense rest, some time to calm down, and just feeling a bit better, I'm back on the treatment train.  I mentioned to my nurse at chemo yesterday that I was at a point last week where I'd just had enough.  I just felt I couldn't continue with any of this.  She thought about things for a while, and asked if I knew about the counseling services offered by the oncology center.  I am a patient there as well, so I was well aware, but thanked the nurse profusely.  She had thought about an offhand comment that I'd made and tried to create something good out of the situation.  I am grateful for the caring health care personnel that I encounter on a regular basis.

I have also recently run afoul of the "pain medicine police", it appears.  My primary care provider works for a small, local hospital.  Throughout this ordeal, she has mostly done triage type work for me, helping me to see the appropriate providers, managing medications, and worrying about some day to day issues so I can focus on the cancer issues.  This has included pain medication management.

I'm sure there isn't a person in the US who hasn't heard about opiate addiction.  In the cancer world, things tend to be a little bit different.  Control is perhaps a bit less lax than for the general public, especially the backache and toothache pill seekers.  Cancer patients seem to get asked fewer questions when they are in pain and tend to have access to the pain meds they need.  I don't take a lot of pain medication, but I've now had 3 cancer surgeries, a course of radiation, two courses of chemo, and I have some active tumors in my abdomen.  Pain is part of my life.  Medical marijuana helps with the pain, but it's something I can only use at night.  During the day, and after hard workouts, I need some access to pain medications.

So, for a year, my primary care provider has been providing those prescriptions.  But, my PCP is currently on maternity leave.  And recently, I had a change in my pain status that resulted in some more pain.  I mentioned this to my oncologist, and she immediately gave me another prescription.  I mentioned to her that this would violate my opiate contract (yes, I have an opiate contract with my primary provider) because I'm not allowed to get pain medicine from anyone but my primary care provider under the existing contract.  The oncologist asked if there was another way to do it.  I explained that with my PCP on maternity leave, I would have to make an appointment with a provider I didn't know and ask for an increased dose of pain medication, which could easily be denied.  My oncologist answered like this: "I don't require opiate contracts.  I don't count pills.  I want my patients to be safe but I also need them to be comfortable to focus their strength on their treatments."  She offered to take on all of my pain medication management, if I wanted.

But, I decided I'd wait.  I sent an e-mail to my PCP explaining the situation.  And, last Friday, I called the prescription line for my PCP and asked for a refill.  I was open about the other medication that I'd gotten in that request as well.

Apparently, my message triggered a query to the state and they found my other prescription.  No big surprise, given that I'd told them about it.  But, they then called me and told me they couldn't fill my prescription because I'd violated my opiate contract.  The nurse agreed that I'd done everything appropriately, but policies are policies.  I am allowed to visit another provider, sign a new contract and get more medication, if the provider is open to my request.  I told them that I would think about it, but my plan is to simply move pain management to the oncologist.  I think I'm pretty responsible about how I use the medications and I don't like being treated almost like a criminal for having cancer and pain that goes with it.

So, despite a low point last week, things are a bit better right now.  I'm done with my 6th round of chemo.  If I'm lucky, it will be my last, or we could do 1-2 more.  If the final response at the end of chemo is good enough, we will move to surgery.  If not good enough, we may try another medication first, although I'm certainly hoping that won't happen.

And, I'm not ready to give up trying against this beast.  At times, I feel pretty beaten up by the treatments.  And the disease.  I may not win this war, but I also won't be defeated.  I'm going to live life on my own terms for as long as I can.  Besides, there are still lots of CrossFit workouts to be done, and trout to be caught.

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