We Now Return to the Program Already in Progress …

A lot has happened during my brief intermission from blog updates, many of them less than pleasant.

Had terrible diarrhea, fatigue, and mucus membrane issues with the first round of the new drugs (all known side effects). That all cleared up when I started the second course, on March 9. The timing was good as I was able to enjoy time with surprise visitors who came to help celebrate my birthday (which many medical types had doubts of me reaching this time last year). By March 17, the weather was improving, too, so I skipped into the back yard to do some long-overdue tidying and other light garden work. Next thing I knew, I was in the ER at the local hospital.

The problem that caused me to seek medical aid was a sudden pain under my right rib cage accompanied by brief light-headedness and nausea. I felt kinda silly going to the ER, but it didn't feel like something consistent with my activity at the time of onset. I had bent down to trim the dead top off a plant, was using hand clippers, so no major chest muscle movement. Yes, I moved a large pot, but that was a couple of hours prior. Besides, moving a pot would have affected my back, not the area under my rib cage - so my non-medical brain concluded.

Dr J (my GP who happened to be attending in the ER that day) was equally puzzled by the symptoms, so ordered a chest x-ray. Nothing showed. However, on the blood test, D-dimer levels (indicate the blood's ability to coagulate) were "very high, about three times" what Dr J said he would have expected. This caused him to think there is a chance I had some sort of embolism - but he did caution the elevated reading could be caused by the Capecitabine/Lapatinib therapy I'm currently undergoing. To be certain, I was scheduled for a CT scan first thing the following am. (Would have had it done that same day, but the CT lab closed just before I arrived.) In the meantime, I was given a shot of Heparin in my tum as a precaution to help me get through the night (in case the worst case scenario turned out to be fact). I suspected it was just a pulled muscle but appreciated the degree of caution.

Good news re the CT scan: no pulmonary embolism. Bad news: the cancer has spread further into my lungs. No real surprise there as the doctors were comparing scans done only at St Mary’s – they didn’t have copies of the scans done over the last couple of months at the Cancer Agency which told me of a spread months ago. The spread might explain why the rib area is sensitive.

Humourous moment of that day: After trying four or five veins in which to insert the contrast fluid line for the CT scan, the techs called in a duty nurse. She finally got something usable on her second try. It was a wee vein near the base of my thumb. The test run of the fluid went well, so on with the scan. But when the contrast solution started to flow, there was apparently just enough constriction in the vein to cause a pressure build-up. The line blew at the junction of the needle and the line. Contrast fluid everywhere, and I do mean everywhere. Down my arm, in my hair, on the gown, on the bed, on the really expensive machine, the floor ... Things worked much better when my arm was repositioned at my side rather than over my head. Regardless, when I left the hospital I looked and felt like someone with the world's wildest cow lick that has been shellacked with several layers of glue. And folks wonder why I live alone.

So, that was last Fri, March 18. By then the pain had spread around me covering all the areas of my rib cage, front and back on both sides, and up to my shoulder blades. Muscles went into spasm every time I coughed, sighed, sneezed …  I couldn’t get out of bed, and then only with difficulty. The doctor I saw on Fri gave me Ultram (something like Tylenol 3 but without the codeine – codeine is a no-no for me due to the chemo drugs’ composition). It didn’t even begin to address the pain. It did, however, turn any diarrhea experience into show-stopping constipation. I guess that was progress of a sort. But the pain remained. An angel in the form of my friend Penny arrived with a heating pad. It was my only true source of relief, but only for the small area getting warmed at any given time. As soon as the area cooled, the muscles cramped again.

On Tues (March 22), out of desperation, I hauled my sorry self to my GP's office after going to the lab for my weekly blood work (God was kind enough to have the two offices located next door to each other). GP ordered Hydromorphone (a synthetic morphine) in the hope that would have a better result than the Ultram. He also suggested Robaxecet (regular not platinum as the latter contains ibuprophen). The study nurse at the Cancer Agency confirmed both were okay for me to take.  Must say while I was eager to have the pain eliminated, I wasn’t terribly keen on the idea of taking the morphine. No, I wasn’t concerned about possible addiction but about the possibility that taking such a strong drug now will make me less responsive to it later – when I “really” need it.

There was still the question of what was causing the back and rib pain. Either I'd pulled almost every muscle in my torso, or the "some back and chest pain" on the Capecitabine/Lapatinib side effects list is a humourless understatement.

As if this wasn’t enough to sort out, the hand-foot syndrome that the study team expected me to get weeks ago suddenly made its presence felt. Most of my finger tips became covered in blisters – I could actually watch them form! Now you know why I haven’t been at the computer much of late. In addition, blisters appeared on my feet, especially on the right heel area. There were several “hot spots” (areas of pre-blister sensitivity) on other parts of my feet as well. Walking anywhere without the cushy warmth of my slippers was very uncomfortable, especially on harder surfaces like the kitchen and bathroom floors. Only one pair of shoes was worth trying on.

I did, however, feel well enough to venture outside. Popped in to see Momzy to assure her I was feeling better (comparatively), and to pick up some provisions at the local mall. Ran into a friend and we got to chatting. Unfortunately I stood in one place too long and more blisters began to form by the time I got back in the car for the drive home. I resolved to stay at home until things improved.

It was then that I received an unexpected phone call from someone at Vancouver Coastal Health. I knew that Dr J was contacting VCH re putting me on the “palliative care list” so that any medications pertaining to my treatment, side effects thereof, and pain management would be covered. I didn’t know that he also inquired, on my behalf, about home care assistance. So when the nice lady called, I thanked her very much but said I was quite okay and when I wasn’t Momzy’s caregivers lend me a hand. There was an awkward silence at the other end of the line. “Um, Janet, I’m a nurse,” she said. “Oh,” I said. “So you aren’t going to come over and do my dishes?” You can imagine the laughter that followed that little faux pas! Mom certainly got a giggle out of it when I told her the story.

No, she wouldn’t do my dishes, but Patrina will be able to help me in a good number of other ways. She is technically a palliative care nurse. We had a very nice meeting on Friday. She managed to convince me not to be afraid of taking the morphine, so I had a friend fill the ‘script for me. Things have much improved since I started taking those little green pills. Yes, I’m still a bit uncomfortable, but only uncomfortable. The muscles in my back and rib area are tight, but not really sore anymore. I think the pills have also eased the pain in my hands and feet. I can certainly type much easier today.

Must say it was a bit startling to hear the word “palliative” spoken in reference to me. But that is the truth of it, after all.

I see my oncologist on Tues, after another echocardiogram and CT scan at the Cancer Agency. Unless she gives me a compelling reason to keep at it, I intend to ask to be removed from the drug trial. I see little point in continuing if things will be as they are now. My quality of life has been severely reduced over the last couple of weeks. Yes, it will be again in the not too distant future, but in its own time. Don’t feel any need to rush that fact into reality.

Stay tuned for further developments.