Palliative Care updates

It’s been a busy couple of weeks, with spring break, visits from my husband’s siblings, staycationing in the Bay Area, and a quick trip up to Humboldt to see my parents and meet with a doctor up there.

Cancer-wise, I think the most important part was meeting with Dr. Fratkin, a palliative care doctor up north.   My mom heard about his practice, ResolutionCare, and encouraged me to check him out.   We had a terrific meeting at my mother’s house – Dr Fratkin, Reil, my mom, my stepfather, and I. Should have asked my dad to come, too, but cancer brain.  We began by introducing ourselves.  Fratkin was interested in finding out who I am, not the cancer, but me.  (All props to my oncologist, Dr. Shek, but that’s not where we go.)  He asked the others about me, and a bit about them and our relationships.

We talked about what I hope to get from working with him, and I explained how I felt about the palliative care crew (a nurse and a social worker) that I’ve been working with at Kaiser.  They’re nice.  They’re caring, but they seem timid, like they, too are trying to get the lay of the land.  I think they might be new at this, or it might just be a personality trait thing – they don’t want to offend me.  What I’m looking for is someone to whom I can turn, who knows about this process, and can help guide me through treatments, side effects, and all the decisions I’m going to have to make.  I want a rock.  I think I may have found one.

He also noted that there seem to be two kinds of people, those who look at life and accept the realities, and those who look at the life only as they want it to be.  Obviously, I’m more in the former category, but noting the differences explains some of the issues I’ve had in my social life recently.

The plan now is that I’ll send him my doctor’s and the palliative care team’s contact info, and he’ll make contact so that he can work directly with them (and maybe help guide the Kaiser palliative care team, too!)  We plan to do video conferencing calls every few weeks.  He wants me to take my marijuana tincture twice a day in small amounts (I’m not going to argue), and to discuss going off cholesterol and maybe diabetes meds.  “You’re not going to die from high cholesterol.”  Just to keep things simple, or simpler.

ResolutionCare had a crowdfunding campaign recently.  While they raised the money they were hoping to, every little bit counts.  If you’d like to learn more (and maybe donate), visit the ResolutionCare website.

In other news, I had a CT scan this morning, and should find out the results later this week.  This scan was to determine whether the Inlyta is working.  (That means no growth or shrinkage.)  It was a pretty rough visit for me.  Usually CT scans are easy, but I was having a lot of abdominal distress, and just all around felt like crap.  I was very glad my friend, Cynthia, was there to drive me home.

Still having lots of side effects – diarrhea, fatigue, some pain (though not too much), and the burning in my mouth with spicy foods or even toothpaste.  I changed to Biotene, and that helps, although it tastes terrible.  The walker has been a godsend.  We were able to go to Alcatraz, and Reil and Molly pushed me around the cells.  We even did an Ikea run and a side trip to Bed Bath & Beyond.  And I made it through all of that!

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5 thoughts on “Palliative Care updates

  1. I am so glaD you met the doctor up north. He sounds great. I hope that Kaiser is receptive to his suggestiions. Your attitude still leaves me with awe. You are doing exactly what you should be doing….which is to say…anything you damn well want. I wish I had more time in the day to visit…maybe one of these Friday’s!

    • I would love to have you visit. If nothing else, see you at the BBQ in May? Or maybe we have to make another multi “friend group” family get together.

  2. We’ve experienced the same thing with Kaiser. I think because it’s a big teaching facility a lot of the counselors, doctors, etc., in more specialized care treatments, are newbies and getting their hours – at least in our experience. Some of the counselors aren’t completely certified and do seem timid. We’ve had a to make some switches just because some of the counselors, etc. just weren’t the right fit. Hang in there kiddo! Sounds like this dude and his treatment program right be the right path. Warm hugs your way! 🙂

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