It's been six months now, half a year since they told me I have pancreatic cancer. I've recovered from the huge Whipple Procedure surgery, made peace with the medications I need to take for the rest of life and am enduring chemotherapy which continues until March.
One of the things I mentioned in early notes here about this cancer is that I would not allow myself to become a professional patient. Oh, please – was I really that naive? My every day now is ordered by the needs of the disease.
Most obvious are the meds. I count them out once a week into one of those little plastic containers divided into AM and PM. But that's not the full story. There is one pill I must take for before every meal, every snack, essentially every time I want to put even a bite of food or cookie or a piece of candy in my mouth. Hard to remember sometimes.
Two others that are each prescribed for morning and for evening cannot be taken together. And of course, these and all the others never need refills all the same time. It's an ongoing daily chore to be sure each med is being taken correctly at its time of day with the proper accoutrement. I screw up now and then even with a chart taped to a kitchen cabinet.MEAL PLANNING
Because part of my stomach was removed in the Whipple Procedure, I now eat several small meals a day. It takes a lot of planning, shopping, organizing before I even get around to cooking and I'm still learning that I cannot eat nearly as much as I once did at a single meal.
I think about food a lot – what to have for the mid-morning snack (don't forget the pill), the need to prep vegetables for the lunch-time meal, the midday snack (don't forget that pill). And clean up the kitchen after each meal.
None of this is nearly as much fun as having regular three meals a day that I used to enjoy cooking. Not so much now.
CHEMO SIDE-EFFECT PREVENTION
There are all kinds of potential side effects that come with the territory of chemotherapy. Fatigue is the most common affliction but the list is way longer than that, although no one gets all of them.
So I rinse my mouth several times a day to prevent sores there. I rub a special cream into my feet and hands four times a day in hope of preventing a really gruesome side effect.
To help prevent infection due to what is called a “compromised immune system” during chemo, I always use medical gloves to clean Ollie the cat's litter box twice a day and I wash my hands constantly which, of course, requires more lotion after each washing.
At my monthly meeting with the oncologist yesterday, the oral chemo pills of which I have been taking two twice a day since the infusion chemo began was removed from my regimen. It caused the sudden, dramatic drop in my red cell count that required four units of blood a couple of weeks ago. It also has contributed to the ongoing anemia.
These are much more serious than the hand-and-foot syndrome that the same oral chemo probably helped cause to turn up in the past few weeks. Fortunately, it's not progressed to that gruesome effect So if all goes during December as the doctors expect, I'll be relieved of these difficulties.
The downside is that European studies over several years have shown that combining this oral chemo with the kind of infusion I get weekly extends three-year survival rate of pancreatic Whipple and chemo patients by about 15 percent to 70 or so percent.
But the doctors believe that the extraordinarily sudden drop in red blood cells is serious enough that preventing it happening again is crucial and this move should do that. I have gone along with them.
When I remember to use the tincture of cannabis, I sleep much better – “better” meaning longer than three hours. Even up to seven sometimes and then the fatigue, which builds during the three weeks of chemo before a week off, is more manageable.
Interspersed with all the daily cancer responsibilities are chemo infusion appointments, occasional tests doctors want, check-in with my primary care physician every few weeks not to mention surprises like the overnight hospital stay for the recent blood transfusions and endoscopy (which came out clean).
How come no one told me how futile it is, with a cancer diagnosis, to try not to become a professional patient? There are so many different things to do and to keep track of to treat this insidious enemy, it is a full-time job.
I try to get through these chores each day without thinking about the big, fat, ugly reason for them. I save that for when I'm worn out toward the end of the day – or, rather, that's when the thoughts none of us ever want to have erupt on their own. A few:
⚫Will I be here at this time next year?
⚫What will the prognosis be when chemotherapy ends?
⚫What if the chemo doesn't work?
⚫How will I die?
⚫Do these negative thoughts affect how well treatment works?
And so on.
It's not always that bad. Sometimes I feel a close-to-joyful acceptance of what I believe is the natural and normal order of life: "Earth to earth, ashes to ashes, dust to dust.”
Just not yet, please. I still have a few things I want to do.
From the first day after diagnosis and for reasons I don't know, I abandoned my usual head-long, deep dive into research when something new happens. In this case, I have limited myself to just the basics of pancreatic cancer and its treatment but few details and no research studies.
Instead, I rely on the doctors, nurses and other healthcare professionals at OHSU who have been dealing with this disease and treatment plan to answer my questions and I do my best to follow what they advise and prescribe.
I know how lucky I am to have been eligible for the Whipple Procedure. When the surgeon first described it to me six months ago, I asked what would happen if I rejected it (it was as awful in his description as it is for real). “You'll be dead by the end of the year,” the surgeon said.
That certainly focuses one's attention. I did the surgery and I'm still here at the end of the year. But mostly I am both too busy with daily maintenance and personally indisposed to see this as a “battle” against cancer - unless the fight consists in this now-professional patient keeping track of all the cancer chores.
Which, apparently, leaves it to you and others to “battle” the cancer, to stay positive for me which you are doing in abundant numbers according to your comments and emails. And don't think that I am not impossibly grateful to you all.