Scan results and a quilt

If you’re friends with me on Facebook, you probably already know that the results of my scan were good.  There was shrinkage in the lung lesions as well as in the abdominal areas.   (Or as some of my friends would say, “Hehe.  Shrinkage! Hehe”. Yes, my friends are 12 year old boys inside.)

So. That’s good. The Inlyta is working. Knowing this makes dealing with the side effects a lot easier.

Most of today was spent chilling in the backyard or working on a quilt in my room. I keep making excuses so that I don’t have to finish pieces, but at some point I’ll need to get over it and just get it done. Part of the problem is my constant state of indecision, coupled with cancer brain ADD. Hopefully I’ll work my way through that.  But for now, here’s my current project that allows me to avoid all the UFOs. 



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!

Update: 2/5/15

I met with my oncologist today for the results of my scan. The news isn’t great – in most areas there was growth. In some cases, it was only a mm or so, but in a few it was upwards of 10mm (basically doubling in size).

So, as of today, I am off the pazopanib and starting a new drug, Inlyta (axitinib). Keep your fingers crossed.

I’m having a hard time processing this. My doctor comforted me with “There are lots of drugs to try.” But in my mind I’m just picturing a bleak and short future. And there’s the problem – I’m picturing the future and it messes with my cool.

So, please, keep me in your thoughts and send lots of get your groove back vibes. And if you can wish away cancer, too, that’d be excellent.

Watermark

The past couple of days I’ve felt like crying a lot.  It could be from the amount of stuff we’ve had going on lately (though really, not too much), the complete melt down of the boy-man-child (what do you call a kid who is 6 foot plus, almost 200 pounds, but really only 15?) the other night, frustration at my painting, a touch of depression, or cancer.  Probably it’s some undealt with stress over the CT scan I’ll have tomorrow.

It’s a scheduled one, for as much as we schedule these things.  The last one was in October, and all was fine.  By fine, I mean that there was no marked growth and there was some shrinkage of the cancer in my body.  Chances are good that this scan coming up will show the same thing.  But there’s still always that stress that pops up before a scan.

I’ve been lucky to be able to make appointments for my scans that are less than 36 (often less than 12) hours from when I call.  That really helps keep the anxiety down.  This time, though, it was more like 4 days out.  Not so much fun.

So today I’m working on breathing deeply.  I dusted off the Enya album (figuratively – it’s on my iPhone) and listened to it while I was in traffic today.  I’m going to go focus on pretty fabrics after I finish writing this, and will try to remove all thoughts of cancer, scans, etc., from my mind.

Denial does have its benefits.