Barbara’s Story

Site created on July 22, 2019

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Journal entry by Barbara Hartnett

My darling PILs,
I know you are all on the edge of your chairs, waiting for an update on my saga, so here it comes. First, however, go to my last posting about what a piece of cake radiation is and erase it all: THE DAMNED SIDE EFFECTS HAVE KICKED IN! Lordy! This narrative may be incoherent because there are so many threads to follow, but I will try my best to make sense of it all.

I get lots of blood tests and a few weeks the test revealed that I was anemic so I got a blood transfusion and it immediately pepped me up—just like flipping a switch. Last Thursday I had a follow up blood hour later the nurse called to tell me my anemia was much worse and scheduled another transfusion for the next morning, right after my problem. Saturday I woke up in terrible pain, in the center of my chest and  both shoulder blades all down my spine. Mike wanted to take me to the ER, but I refused to go; my thinking was: is some doctor who never met me, quickly glances at my file, sees that I am wearing a fentanyl patch and taking hydrocodone, going to give me a shot of morphine? Finally, my genius husband suggests I try Salonpas (one of those sticky pads to help pain) Neither of us had high expectations of success because it sounded like it was useful for muscle pain, not the bone pain I had. But in about 90 minutes I was feeling much better and got a good nights sleep. Sunday morning I was back to my normal, tolerable pain level. Monday I got my usual radiation and within an hour the bad pain returned and varied the rest of the week. I think the pain levels varying so wildly will be part of the new normal, but I will be better prepared. My oncologist told me never to go to the ER without first talking to the oncologist who is on duty, 24/7. He/she would call me, decide on a course of action and convey that decision to the ER doc. Then I go to the ER.  I will also get an appointment with my palliative care team this week.

This weeks blood test was fabulous — didn’t even need the blood transfusion I was scheduled to get. Yeah! My doctors believe that the anemia will come and go as long as I live because the tumor/ulcer is bleeding from radiation damage. That may continue even after my radiation treatments are over or even be permanent. first off-ramp for the bleeding is my feeding tube, which I had suspected, was confirmed by both doctors. Those of you who have known me a long time know I have fought my battle with weight since my parents put me on my first diet at age 9. For years I have joked that the only time I will ever be skinny would be shortly before I died of some dreadful disease—be careful what you wish for...I lost 5 pounds in the last 6 days and I was thrilled, but my oncologists, not so much. The reason: eating and taking meds have become ordeals. I have become classically conditioned—I am almost afraid of foods and meds. Even soft foods make me sick, so the feeding tube will soon be put to use. For the moment I am drinking Ensure a couple of times a day...Yummie! I have 3 new meds designed to coat and numb my esophagus, so here’s hoping.

What I have learned this week: 
I will find ways to stop pissing off my esophagus.
There may be more anemia, varying levels of pain, and transfusions in the future. These can be remediated. 
I will pretend that each of the new god-awful medicines I have to swallow to coat my esophagus is actually a fine Prosecco.
Cancer is not as much fun as I thought it would be.
But it has been a blessing, too, an opportunity to realize how many people love doesn’t get much better than that!
Without the library and internet, I would be much crankier; even with them I can get pretty cranky!
This, too, shall pass.

I will close with the ultimate cause of all the above troubling side effects, a vivid analogy from my radiologist to help me understand what the radiation is doing to my insides: imagine that you are on a beautiful beach on a beautiful sunny day and you have no sunscreen. Unfortunately, you fall asleep for 6 or 7 hours and wake up to the pain of a terrible blistering sunburn. Just when you think things couldn’t get any worse, a stray cat saunters by and decides to use your blistered back as a scratching post. Pretty much fun, huh?

Love to everyone of you!
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