Category Archives: Health

Suddenly it’s getting real

Soon it begins.

Gemcitabine. Cisplatin. Durvalumab. Not household words. But these drugs will define the next months of my life as I begin chemotherapy and immunotherapy treatments. The first two drugs are a chemotherapy mix. The last will power immunotherapy.

The drugs are given via an IV drip during infusion sessions that, I’m told, last about six hours each, one day a week for two weeks, followed by a week off, and then repeated for the foreseeable future. I was offered a choice of locations, either the main Queen’s downtown Honolulu location, or their smaller Cancer Clinic in the Kuakini Medical Plaza. To begin, I selected the smaller and less intimidating Kuakini location, a decision that can be reconsidered later.

My oncologist was upbeat when he described the treatment, saying nausea, the most frequent side effect, is usually kept under control by other drugs. And other serious side effects don’t happen very often with the particular mix of drugs I’ll be getting.

Port Insertion

To make the process easier, I’m booked to have a chest port inserted on Thursday. The procedure will be done at Queen’s Medical Center, and is expected to take about four hours from check-in to discharge.

The port provides a simple and convenient method for administering the chemotherapy and immunotherapy drug concoctions over the as-yet undetermined period of months.

Perhaps this is my chance to dig into that stack of books I keep saying I intend to read!

Now, deep breath.

Those little greetings

It seems so simple.

“Hey, how are you doing?”

It’s a very common greeting when running into someone on the street, as happened several times early this morning.

But for me such a greeting poses an immediate challenge, requiring me to quickly decide how to respond.

Do I treat it as a rhetorical question? Respond with a shrug, “not bad,” and then direct it back. “And you?”

Or how about an honest reply? “Well, I’ve been diagnosed with biliary tract cancer, potentially curative surgery failed, and I expect to begin a battle for my life within a couple of weeks when chemo and immunotherapy begin.” Probably a conversation stopper.

I usually choose something in between. “Well,” I say, “I’ve been better.” It gives me a second or two to consider the degree of self disclosure warranted by the circumstances and my relationship to the person I’m responding to.

If it’s someone I know, I try to provide the basics. “Meda and I have been in California for much of the past two months as I’ve gone through diagnosis and initial treatment of a small cancer in my gut.” It’s all there in one sentence and, without lots of details, it doesn’t hit too heavily. “Now that we’re back home, I expect to start chemotherapy and immunotherapy soon.” Normalizing the whole thing.

It’s not that I’m avoiding disclosure, as you already know if you’re reading this.

But it can quickly turn into a long, complicated and muli-layered tale, more than I want to inflict on all but the most eager listeners.

Making it more complicated is the fact that I don’t really know how I’m doing.

I have not asked for or received a prognosis, but am trying to just keep moving forward a step at a time with a positive attitude.

This does complicate practical matters, as some of the questions we face, such as what to do when our car lease runs out in September, would be easier to deal with if I knew more how much future I can reasonably expect to enjoy.

But, for now, I’ll accept that tradeoff and keep moving.

Signs of recovery

Here are some key indicators that I’m recovering from last month’s surgery. This doesn’t mean that I’m recovering from the underlying cancer diagnosis. That will start with chemotherapy in a few weeks. But I’m starting to feel human again. Here are a few of the signs.

1) Food. I’m actually now looking forward to eating. During most of the past month, that simply wasn’t the case. At first, in the days immediately following my surgery, nutrition came via the IV drip along with antibiotics, pain meds, and basic fluids. Later, I quickly found the pureed diet I was anssigned unpalatable. And, once past that, I just didn’t feel hungry. All that has changed. For the past week, I’ve eaten a bit more every night, and that has paid off in increased energy.

2) Increased energy. Around 3:30 p.m. Thursday afternoon, it suddenly dawned on me that I had been up—and upright—since around 6 a.m. without the need for a short rest or nap. And the day included lunch out with a friend, a short spin through a Menlo Park thrift shop, and a stop across the street in a Penzeys’ store.

3) Worries about unwritten blog posts. Suddenly I have a list of blog posts I feel guilty for not writing and sharing! Yes, I know this runs counter to my declaration of a medical leave, but feeling these posts organize and start to write themselves in my brain is another clear indication that my recovery from surgery is well on its way.

4) Lists. Yes, I’ve caught myself starting to make lists. Things to do before leaving California. Things to get done the first few days after we get back home. Lists of potential blog posts. They all indicate planning ahead, looking beyond this particular day.

All good signs. Now I have to turn a couple of those lists into check lists to encourage actually getting some of those jobs done.

Cut loose!

I received more good news during a video appointment on Tuesday with my surgeon’s nurse practitioner.

After she walked through a list of repeatedly-asked questions (How much pain do you have? None. Any nausea? No. Etc…), I asked whether Dr. Adam has any idea of ballpark dates when I’ll be able to fly home.

Did I see a sly look cross her face?

She said that I’ve been making good progress and have been healing well from the surgery, which she has discussed with Dr. Adam.

The bottom line: In his view, I’m good to go. He’s turning control of my case over to the medical oncologist here at UCSF, who will in turn hand off primary oncology duties to Jared Acoba at Queen’s on my return.

So this means that we’re free to return home. I had to make a couple of schedule adjustments here, and then we booked a flight back to Honolulu next Tuesday, June 9. That gives us a chance to wrap up things here without rushing, to see several people we wanted to connect with, etc.

I have two more blood tests to do here, one scheduled next Monday.

And then we’ll be on a flight back to Hawaii. Psych up, kitties!