Happy Independence Day

Raspberry curd filling made with our own berries, local blueberries and white nectarines.

Update from Dr G

Rik and I saw Dr G last week. He wants to retest my lungs with another CT to make sure my pneumonia has ended. Also I think he wants to me take a blood test for pneumonia markers. We even talked about the possibility of the pneumonia vaccine to prevent another month like this.

As far as treatment goes, we have several options --

• Pembrolizumab trial (If I qualify. Usually they want someone with fewer pre-treatments and bone-only mets.)
• Testing my tumor for micro satellite instability (this is the very newest treatment)
• Choice of chemo: Taxol (paclitaxel, which I had one time, a few years ago), Ixempra (ixabepilone), or Cytoxan (cyclophosphamide, which I had during my original early stage cancer 16 years ago)

He wants to incorporate neuroprotective medicines. I'm not sure which meds he means, but the idea is to prevent further neuropathy in my feet and hands.

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!

My AHA moment

A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."

MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.

I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.

You can view my story here and Anna's here. Remember to turn up the volume!

If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.

To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.