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.

Some Perspective

March 11. A happy day for me. Not so happy for so many others. And for the people of Japan, each day since seems to present a new horror. Puts life into a whole new perspective.
 

More than a full deck

As a graduate of the Zsa Zsa Gabor School of Creative mathematics, I honestly do not know how old I am.  ~Erma Bombeck


At the risk of thumbing my nose at my oncologist and other health care providers, I'm pleased to announce that I have officially proved many of them wrong. As of Friday, I am one more than "a full deck". Yup, I've made it to another birthday without surrendering any more of my faculties than was absolutely necessary. Finally, absolute proof than one should never believe everything they hear.

Speaking of lost faculties, I am beginning to take great exception to the labelling of some personal care products which have take up permanent residence on my shopping list. What bright light came up with the notion that Depends would be a suitable name for an incontinence product? Wouldn't Dependables be a more encouraging label for those of us relying on its purported attributes? By calling those spiffy disposable panties Depends, I have to wonder if they're truly up for the job. It's like they are responding to my questions by saying, "That depends". What sort of reassurance is that? As for Poise, I can assure you, gentle reader, that there is little self-confidence left when one feels the need to reach for this item off the store shelf. 


Likely all the creative marketing and advertising minds are too busy coming up with fabulously memorable names for paint colours (e.g., Elephant's Breath or Dead Salmon by Farrow & Ball) or nail polish colours (e.g., I'm Not Really a Waitress or Suzi Sells Sushi by the Seashore by OPI). 


My suggestions re more appropriate names for incontinence products:

LOL (laugh out loud - with confidence)
Gotcha
Oh pooh!




No fear. If I still had one, I would keep my day job.

Magic Mouthwash

No doubt the term once referred to the bar of soap Puritan mothers inserted into children's mouths in an effort to clean up their language - of course, I have no first-hand knowledge of such a practice. Regardless, the term has entered my rapidly increasing medical lexicon by way of a prescribed liquid that may or may not help sooth the canker sores, etc. brought on by my current course of cancer-fighting medication. Here's a list of ingredients as ordered by my oncologist:

• Diphenhydramine - an antihistamine to reduce inflammation
• Glucocorticoids - to reduce inflammation
• Lidocaine - a local anesthetic to relieve pain
• Maalox - an antacid formulation which acts as a coating agent
• Nystatin- an antifungal for candidiasis
• Sucralfate - a coating agent
• Tetracycline - an antibiotic
• Erythromycin- an antibiotic 

Interestingly, the resulting concoction tastes very similar to those little cinnamon hearts that are so popular around Valentine's Day. While not quite in the category of gourmet yummy, it is pleasant enough to take. Must be careful not to eat or drink anything - including water - for at least an hour after taking it. Also can't brush my teeth of a similar length of time. So it will require some careful planning on my part re timing of doses which can be up to four times each day. When the sores are present, I swish and gargle a teaspoon of the stuff before spitting it out. Given the list of ingredients, I'm not sure I want to be swallowing more of it than necessary.

If said mouthwash can work magic on the side effects, I wonder if I will also be able to pull a fluffy little bunny out of my mouth, er, hat. With Easter fast approaching, that might be one way to ensure I'm the recipient of some fine chocolate eggs!

Cycle Two - Woo Hoo!

In to see the oncologist and the study team today. They echoed my suspicion that the Capecitabine is largely to blame for my resent discomforts. As a result, the dosage of that drug has been cut back to 80%. I will continue on the full dose of Lapatinib. I had thought that I had a nasty case of thrush (from stem to stern), but it turns out the Capecitabine did a real number on my mucus membranes which translated into multiple canker sores in my mouth, extremely dry nostril/sinus areas, etc. A 'script for a "magic mouthwash" will help get that end of things back on track. All of this made starting the next cycle of the trial a little easier to swallow, so to speak.

The trip into town also afforded the chance to meet up with friends Lynda and Trudy, who hadn't met until we all sat down for lunch (yes, I'm able to enjoy food once more although still limiting choices to keep side effects at bay). Penny and I also spent a bit of time on Granville Island before my appointments and our subsequent rendezvous with the others. Feel like I haven't been there in ages as lots of changes - new front on the Arts Club Theatre, Edible BC moving into the old Wood Co-op space, Halfmoon Yoga shutting down but keeping an online presence ...

Returned home to a very quiet house. Melissa, my cousin Bruce's daughter, had been staying with me while her dad hung out at Momzy's (yes, all four of us got together on a regular basis especially for meals). We had a great time together. Took her to my weaving guild meeting, for a tour of some of the more interesting homes in the area, and a short walk on the beach. We also did some retail therapy. Last night, I gave Melissa quick lesson in felting - both needle felting and the "wet" version. What a blast! Did our creating at Momzy's so she could supervise the progress.

Oh yes, while I was waiting to pick up my meds at the Cancer Agency pharmacy, I hung out in the patient lounge. Shortly after I arrived, one of the orderlies arrived and began playing the electric piano that is kept in the room. I remember listening to Guy play on several occasions when I was regularly at the Agency for chemo and radiation. He and I started talking, and he decided to teach me how to "play" the piano. I found his approach quite interesting. It went something like this: Guy likened the keyboard to the building where he worked, and told me both had seven floors/octaves (actual, the Agency building is six floors high, but I suspect there is a basement, too). Fingers on his left hand were his "bosses", while those on his right represented him and his co-workers. The bosses - which always worked in the background (so never played the melody) determined which floor he would be working on while playing the piece. One boss was in charge, and that told him which rooms (keys) he and his co-workers would be working in. He had to keep moving as his bosses kept moving, because nobody could be idle on the job. I don't remember the rest of the lesson, but it was a most interesting way of viewing a keyboard. I will have to try it out for myself someday.

Guy told me that, in addition to learning how to play the piano (on that very keyboard), his job had taught him a more important lesson - how to live. He then asked me what was the most important moment in my life. I said right now. He responded by saying that was the right answer at the time I said it, but that moment is now in the past so wouldn't be true if he were to ask me the same question a second time. He also told me about a patient he once met who told him that she didn't live in the past because that made her depressed, and she didn't live in the future because that made her anxious. Instead, she resolved to live in the present and enjoy it for what it is. Guy said he tried to live his own life that way, that he tried to savour every moment because he knew all too well that it could be his last. He saw a lot of pleasure in what others call chores - shopping, cooking, paying bills, making repairs around the house, helping his kids with their homework - simply because he was able to do those things, knowing that some day in the future he wouldn't. He said many more things that I don't remember right now, but suffice to say that our brief 10 minute chat left quite an impression. Over the years, no matter what I saw Guy doing, no matter who he was with (patient, doctor, other staff), he was always smiling. While I'm likely to forget the piano lesson, I suspect the rest of his words will stay with me for some time to come.

Crappy week

Not the most pleasant of weeks. Likely payback for disobeying Cancer Agency orders to stay close to home (last weekend I took Momzy via the train to see Edith and family in Everett, WA).

Abdominal pain when diarrhea/constipation isn't an issue - must say the whole human pretzel impersonation thing is starting to be a tad tiresome. A bit of vomiting. Some minor rectal bleeding. Burning pain in "nether regions". You get the idea. No amount of gentle bathing, hot or cold compresses, creams or lotions designed for the purpose has helped. With the possible exception of cold compresses, such home remedies only seem to make matters worse. In addition, it's nigh on impossible to find anything to eat or drink that doesn't set the whole thing off once more. Not that I have much appetite. (Interesting aside: I have GAINED two pounds despite my body's efforts to void anything I force it to take in.) The BRAT plan of bananas, rice, applesauce, and toast are about all I can handle at the moment. Even water is a tad "iffy". Tried a hard-boiled egg a short while ago. So far, so good.

A couple of phone calls to the study team at the Cancer Agency did produce some plausible remedies (incl a $25/pill oral version of Canesten), with only marginal success. Thankfully I have an appointment with my oncologist and the study team on Tues so will see what they think then.

Understand that all of this is not unexpected. Most of the above are potential side effects of the Capecitabine/Lapatinib combo. Things have eased off a bit today in any case, perhaps due to the fact that I have reacted the point in the medication cycle where I'm off Capecitabine for a week (was told the side effects of the two drugs - which are quite similar - might be worsened when the two drugs are taken together as with this study). Don't mind so much if it continues for a bit, but I would like to be able to sit or move about with greater comfort. 

At least I'm able to move about a bit more today. In addition to having a wee walk in the sunshine, I've been able to pop in on Momzy for the first time in days, and to attend to some neglected chores. Relatives arrive tomorrow for a very short visit (two days) with Momzy. The visit will be a pleasant distraction, I'm sure.