On the Pills

After two days of sleeping 20 hours each day and several more days with extended (3-4 hour) mid-day naps, I'm starting to feel more like myself. (Must say I would be rather more distressed should I start feeling like someone else, but that's a different matter.) Having been reminded by the oncologist that side effects of Capecitabine and Lapatinib are cumulative, mid-day naps will be a regular thing for me from now on. If they don't produce the much-sought-after beautifying results, there is always the hope that regular naps will help reduce the chance of another attack on some poor innocent. Am currently attempting to make peace with my inner hellcat and once again look on blister-packed pills as my friends, although sometimes I seriously wonder about the latter part of that statement. In case you, gentle reader, have ever wondered what my pharmacy order looks like, here's a glimpse at my med supply for a three-week period. Several more blister packs of Lapatinib (the bigger pill) are inside the box. Note painkillers, anti-depressants, antacids, anti-nausea meds,  Magic Mouthwash, and various creams were not included in this photo.

Must say I was a bit taken aback when I first say the warning labels on the bag. Now, it's pretty much old hat.

Wish I could include a photo of the nifty horsetail salve several members of the local spinners/weavers guild brewed up for me, but it kinda looks like sludgy tea so not much to photograph. Heated up the brown slightly viscus liquid and soaked my feet and hands before heading to bed. A noticeable change in the condition of my skin after the first soaking. Have also found it to be effective re calming the inflammation and rash on my inner arm - a side effect from the last infusion of CT contrast fluid. Many, many thanks to all who collected horsetails on my behalf and to Penny who took on the chore of stewing up the brew. If the guild is ever in need of a fund-raising idea, suggest you bottle some and sell to others with irritable skin conditions.

A Crack in the Delicate Veneer of My Life

The reality of my own situation seems to have suddenly hit me. Had a meltdown yesterday while waiting for my meds at the Cancer Agency. The trigger was a delay in getting the prescription filled (I've been kept waiting between 2 and 4 hours each time I go to get the drugs - yesterday I waited nearly 3 hours because the pharmacist-in-training filled the order incorrectly and had to start all over again - twice - which also meant checking over my lab results to ensure proper dosage was given and filling out the various trial/study forms each time). While the delay was frustrating, I can't believe it was the sole reason for my going into a full-tilt rage and subsequent sob-fest. I'm made an appointment to see one of the Cancer Agency's counsellors and have also made an appointment with my psychiatrist. Can't believe that after four years of dealing with the day-to-day crap of the disease I'm suddenly upset. Don't worry. I have the good sense to get the help I need. One fleeting thought of suicide is more than enough for one life-time, thank you very much.

On a happier note, got the latest CT scan results yesterday. While there is MINOR spread, there is also a slight reduction in the size of some of the pre-existing lesions. On the main, the oncologist considers it to be an "unchanged" reading. Which is very good.

Also learned that I will be seeing the oncologist every three weeks for the rest of the time I am on these drugs. For some reason thought I wouldn't have to do that after the summer. This will have an effect on any future travel plans, but I'm sure I can adapt.

I'll share photos and stories from my last couple of weeks - when I enjoyed the company of Dan and later Trudy - in a few days. 

Joy in Giving

Just before Easter I had the great pleasure of attending an event at Capilano University. It was an opportunity for scholarship/award winners and their donors to get together. You may remember a mention in an earlier post on this blog in which I described two awards that will be presented from proceeds coming from my life insurance policy. Well, I wasn't willing to wait until after I embark on the journey called my after-life-time. I put up a small sum (equal to less than $50/mon for one year) so I could have the joy of knowing that someone out there is benefiting from the gift during my lifetime. As luck would have it, the textile arts award I set up at Cap was presented to Rebecca Fisher (aka Rebecca Lavall), the woman who taught me to felt some 10 years ago! Rebecca and I have crossed paths many times over the past decade. We received our cancer diagnosis within two weeks of each other - mercifully, 'Becca is okay now. So it was quite the reunion that afternoon at Cap. We talked the better part of three hours, and still have loads to catch up on.

Here's a shot of Rebecca and me with Mary Lou Trinkwon, co-ordinator of the textile arts diploma program.

Healing Hands

While the current regime of drugs is doing wonders re battling the nasty bits that are overtaking my body, the cumulative side effects are becoming something of a trial in themselves. The blisters that plagued my hands and feet a few short weeks ago have given way to callouses and cracking, neither of which can be relieved by the prescribed cream no matter how much is applied. Hence my silence of late - it was just too darn painful and awkward to type. In an effort to provide some relief, my oncologist gave me this past week "off" the Capecitabine - since the skin issue will only get worse over time, she felt it best to get things under control sooner rather than later. I'm happy to say things have improved, although my right thumb and index finger continue to lack much in the way of feeling around the tip. As a result, my handwriting looks much as it did in the third grade. I was trying to do a bit of sewing yesterday, and had to pick the needle up with my left hand, and then transfer it to my right (dominant hand) to do the stitching. Things may be a bit awkward and uncomfortable, but they aren't painful. I see the oncologist again tomorrow. If she deems the Capecitabine "holiday" a success, I will resume the trial drugs as before albeit with another reduction in the Capecitabine.

This trip to Vancouver could prove to be a tad challenging for another reason. My friend Dan is arriving from Halifax tomorrow and is due to land at the Sechelt float plane dock at 5pm. If the Cancer Agency's pharmacy is as slow getting the meds together as they were last week (it took four hours to bundle 35 pills that were already pre-packaged in blister packs!), he might end up sleeping on the dock! On the upside, I might have a chance to take in the Vancouver Public Library's annual book sale before hopping the bus back to Horseshoe Bay.

Despite the challenges of cracking finger tips, I continue to enjoy life. In fact, this was one of the most enjoyable Easters I have in some time. The Easter Sunday service at St Hilda's was very uplifting. Felt so energized, I hosted a dinner for "Easter orphans" including my mother, Jon, and Jill. While the beer-infused onion soup, chicken in wine & mushroom sauce, and scalloped sweet potatoes with spinach were all well received, it was the "bunny cake" that proved to be the highlight of the meal. Inspiration came from the Easter cakes Momzy made for the family when I was very young.

Measure for Measure

The study nurse just called to give me a report re today's blood test (which I had done at the local lab). Everything continues to look good there. Jayne also provided some results re the CT scan that I had last week, the one that couldn't be reviewed before I saw the oncologist due to a tight turnaround time. Comparisons for only two of the lesions were given to me, but they represent the overall affect of the current drug cocktail. Lesion #1 is located in the lower lobe of my left lung. Before starting the drug trial, the lesion measured 12mm. Today, it is a mere 4mm. The sample lesion in the right side of the trachea began the study at an imposing 15mm but has since shrunk to 8mm. Yup, that does provide a pretty compelling reason to keep on the drug trial. Besides, other than some dryness/callousing on feet and fingertips (a post-blister effect) I've had no adverse side effects this week thanks to the reduced dose of Capecitabine. Nose hairs crossed that we've found the magic dose. I had great fun helping Penny celebrate her 60th b-day this past weekend, and fully intend to out-do the festivities come my own 60th. In the meantime, I'm sure I'll find other excuses to live life large with my amazing circle of friends.

Third Times the Charm?

Am pleased to report that today my hands and feet feel almost normal. Aside from some extra dry spots, feeling has pretty much returned. I couldn't be happier.

Update re Tuesday's meeting with the oncologist:
I arrived at the oncologist's office fully prepared to withdraw from the drug trial. In fact, that is the first thing I told her. While the back issue was bothersome enough, I have rarely experienced as much frank pain as was then present in my hands and feet. And then there was small matter of diarrhea to contend with. In a nutshell, unless the study team could come up with a compelling reason for me to continue with the drug trial, I wanted off. I wanted my quality of life to return to what is was a mere six weeks prior, before I stared the study. Well, not only did I receive a compelling reason to continue, but better news that I could have possibly hoped for.

Turns out, the drugs are working far better than anyone imagined they might. Several lesions on my lungs have "disappeared" and many other have shrunk. This was more than apparent to my oncologist after only a quick scan of the CT scan results - the scan was done so late in the day on Monday that a radiologist hadn't time to review the images before the meeting with my oncologist on Tues am but they will, no doubt, confirm that the oncologist's untrained eye saw. So it seems all the pain and suffering has been worthwhile after all.

I started the third cycle of the Capecitabine/Lapatinib on Tues evening. Since the Capecitabine appears to be the drug responsible for the unpleasant side effects, the dosage has been reduced once more. If it continues to give me grief, the oncologist will try to keep me on Lapatinib alone (needs permission from trial sponsor to do that). In any case, I've bought a bit more time.

Will know in a little over a week how this cycle's side effects go - it takes about that long before they kick in. For now, I'm increasingly optimistic. Hey, fewer lesions. Things could certainly be worse.

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.