Drug-free summer - NOT

First of all, many thanks for all your concern, good wishes, and words/prayers of support. It has been something of a trying time, to say the least.

Good new is that my oncologist was back at work last week and, after hearing my latest news via Dr Wadge, contacted me to set up a meeting. We discussed various treatment options. It was decided that since the cancer continues to spread in more than one part of my body, there will be only limited results in a very restricted area should radiation treatment be resumed. (Thank goodness!! Was not looking forward to another round of skin decomposition and 2nd degree burns!) Thankfully, there are a couple of chemo options that will work on multiple locations at the same time.

The first option is the investigative drug from a trial I was on last year. Unfortunately the drug isn't yet available, but should be in the very near future. It performed wonderfully re reducing/stabalizing tumours during the trial, but the study team is still collecting data regarding the drug's ability to prolong patient survival - preliminary results suggest the drug performs well in that regard, too. That data should be compiled by the end of July, but there is no word re how long it will take to calculate the results nor is there any guarantee there will be enough information to offer any definitive answer to related questions. More data may be needed before the research team is satisfied that extended life expectancy is probable for those taking that drug. Given that there is no way of telling how long any of this follow-up research will take, my oncologist has suggested opting for other treatments in the meantime.

As a result of all of this, I've signed on to another study (my third, if anyone is counting). The nurses in charge of the study were on holiday last week, but will be back at work tomorrow. They will undertake the randomization process (a computerized coin toss that determines whether I get the investigative drug or am in the control group). They will also co-ordinate baseline testing such as CT scan, blood work, and so forth. Once all that is completed, I start the trial.

Since this is a study, I will have to go to Vancouver for treatment. Treatment will be every 21 days.

If I am given the investigative drug, I can expect some nasty diarrhea activity. In fact, severe diarrhea is the most common side effect. And they do mean severe. Apparently six people died as a result because they did not address the issue soon enough. Trust me, I won't be one of those. Other meds I've taken have had similar warnings and I haven't hesitated to seek medical assistance to both stem the loss of bodily fluids and to keep sufficiently hydrated. All of the other side effects appear to be comparatively minor and far less debilitating - fatigue, hair loss, etc. Feel I can easily live with all of this.

It is the "control" option that has me far less enthused. In this case, my oncologist has the option of choosing from a list of possible drugs. I've had most of these before and several, including capecitabine, vinoralbine, and gemcitabine are no longer effective or I've already ingested my life-time limit. That leaves taxol, one of the least favourite drugs I've encountered thus far. It's the one that left my hands and feet numb - couldn't stand for any length of time, and couldn't pick up things like needles or pins - and ensured that Tylenol 3 was a regular part of my diet. My oncologist assures me that, should I be randomized into the control group, she will prescribe a reduced dose of taxol and provide a number of other medications that will help offset those nastier side effects.

So for now I'm waiting to hear from the study nurses regarding the outcome of the randomization and dates for the CT scan and baseline blood work. The oncologist hopes everything will be in place so I can start treatment by the second week in August at the latest.

Must say that I am feeling pretty optimistic about all of this. First of all, I don't have to wait another month before having any treatment. Also the mere thought that I continue to have options - and apparently there are still a couple of other drugs to try that I haven't mentioned above - keeps my spirits on an upward trajectory. In addition, aside from the discomfort in my neck and lower back/hip and occasional wheezing, I feel pretty dang good. No, I don't feel like running off on another travel adventure, but I do look forward to a variety of diversions closer to home.

In summary, I believe this is all very good news. I many not have the drug-free summer I envisioned, but I will certainly be around to enjoy another autumn (my favourite season) or two or six.

Many thanks again for all your love and concern. Your good wishes and healing vibes do much to help sustain me, and for that I humbly offer my sincere appreciation.

Shake me up, Judy

Title for this post comes from the BBC adaptation of "Bleak House" by Charles Dickens. The film offers up a wonderful performance by Gillian Anderson (of X-Files fame) as Lady Dedlock. The quote "Shake me up, Judy", however, comes from Phil Davies in the role of the unforgettable moneylender Smallweed (Judy aka You-Poll-Parrot - an odd choice of nickname since she utters only two or three words the entire film - is Smallweed's long-suffering granddaughter). There is no mention of the man's affliction but it appears to be some sort of osteo malady. In any case, Smallweed is one of the characters providing a degree of comic relief to an oft otherwise, well, bleak story. Here's a sample of Davies/Smallweed in action:

For me, the phrase "Shake me up, Judy" takes on an entirely different meaning.

In recent months, much of my little world has had something of a shake up.

I spent the better part of the past two + years getting my affairs in order following the "terminal" diagnosis, only to find myself very much alive and bordering on well months after my "best before date". The adjustment to the latter is almost as stressful as the former. While I have no experience with such matters, I assume it is akin to that faced by someone on Death Row who is given an unexpected stay of execution or someone who has prepared for extremely risky surgery only to have the operation cancelled after they've arrival in the operating room. Yes, my situation was indeed good news but it was still rather unexpected. And I knew things could revert to a more precarious stance at any moment. And so they have.

In recent days I learned my burst of seemingly robust health hid a sinister force bent on enticing me over to the darker side. Knew it would happen sooner or later, but I was hoping for later even while preparing for sooner. Yesterday I was given a dose of optimism when told treatment options still exist.Talk about an emotional rollercoaster.

So I'm left to cram as much life into my life as I can while keeping one corner of my eye on the proverbial hourglass. Joy mixed with caution, if you will. Part of me running full tilt into things while mentally holding something back. An odd position, to be sure.

It's difficult to explain how my mind is working these days. Yes, I'm ruminating on all the medical stuff, but I'm also giving over no small amount of grey matter to all things pertaining to textile arts. The general stuff of life, interactions with others and the world around me, also requires mental attention as does the absorption of new information and ideas. At times it seems I'm watching a movie or play, an outsider looking in on all the action. On other occasions, there are long periods of deja vu where I can tell someone else what will happen next but don't for fear of stopping the action. Over the past year or so, there have been times when my mind and body seem out of sinc - mentally grasp for words, forget what I'm saying in the middle of a sentence, start reading "across" crossword clues as "down" and vice versa... The deja vu and sinc issues have become more common in recent months. Is my brain going somewhere without the rest of me? Hmmmm.

Not sure if any of this makes any sense. Like I said, there's a lot going on and much of it is hard to put into words. That's not to say it's all bad or uncomfortable or anything like that. Feels very natural somehow. Like everything is happening just the way it should, even if it's not what I want to happen, even if I don't know what's happening or that it is happening at all. Perhaps realizing that I can't stop whatever is going to happen no matter what I do or don't do helps me rationalize my way to a point of calm?

No, I'm not being brave. There's nothing brave about any of this. Truth be told, I'm damn scared. Interestingly, I'm also very comfortable with what's going on. Yes, I'm tired. And I'm not thrilled about being sick all the time. In fact, I literally am sick and tired of being sick and tired. But I'm not freaked out about it. As long as someone is giving me information about what is happening and what is going to happen next, I seem to be good with it all. Really. Sad but not distraught. The weird part is, I was extremely emotional when I was younger - could be bawling one minute and laughing the next. Would not describe myself as an overly mature individual (if I continue to act like I'm 10-years-old I won't get old, right?) but I'm somehow able to work with the heavy stuff okay. Not sure what that means either.

Guess life is truly a crap shoot and we're all just dice in the wee tumbler the Great Creator tosses around from time to time. The lot we get is the lot we get. It's up to each of us to do something with what we're given. And then, without a moment's notice, we're scooped back into the tumbler for another roll.

So, what happens now? I haven't a clue. But, like Smallweed, I'm trying to get comfortable with whatever life throws at me next.

So, Judy, continue to shake me up!

8 = ??

Trying to think of this as a lucky number. Many cultures (esp Chinese and Japanese) do. Remember all those weddings taking place on Aug 8, 1988?

I have no plans to marry in the near future - or distant future, for that matter - but will still find August (the eighth portion of the yearly calendar) to be a life-altering month.

My next CT scan has been pushed up to August 21. The following day I will meet with my oncologist to discuss her planned course of action. I'm more optimistic about such matters than a couple of days ago (when it seemed more like I was "behind the eight ball", i.e. in a difficult situation) as I now know there continue to be treatment options available. In addition to previous mention of another round of radiation therapy, there are those chemo choices mentioned a few postings back.

Really do operate best when I have information that I can use to weigh available options. Lack of info results in an over-active imagination filling in any real or perceived blanks, usually with unrealistic responses that only fuel an increasing level of anxiety. Yup, knowledge truly is power. Once I have appropriate information from a reliable source, any given situation is better understood. I can then hand over the business of worrying to the professionals and get on with doing what I need to do to help move the process along.

So life will simply carry on as is until August 21. As for what happens after that? Well, only the Magic 8 Ball knows for sure.

So Much For Summer Fun

Sorry for not writing for a while. I've been too busy doing things to sit still and write about them. Important things like hanging out with Momzy (this past Sat we went to the market, had fish & chips at the beach, went for a drive, sat in a forest near a waterfall, enjoyed some gelato - all in one afternoon!), seeing friends, honing my barbequing skills, getting back to playing with fibre (spinning, dyeing, sewing, knitting), trying to tame the garden ... In other words, I was enjoying summer to the fullest for the first time in at least four years. But the light breeze would occasionally whisper in my ear that all was not as it seemed.

No doubt things were starting to turn slowly, but I was only conscious that something wasn't quite right about two weeks ago. The edema in my left arm was as bad as it has ever been; left shoulder and side of the neck ached as if I had endured a good workout or done some heavy lifting; there was an odd almost pulsating ache in the area just above my left collarbone; began to wheeze at night no matter what I was doing - reading, knitting, sewing, lying down; became short of breath after walking only about a block on level ground... About a week ago, I noticed the tender area around the shoulder and neck was swollen. Today, it's worse.

Have a real urge to cocoon these days,  to spend a lot of time on my own. Suspect the added comforts Phil put into the house this year have much to do with the desire to stick close to home, but it has been due to the hitherto unnoticed physical changes as well. Guess Momzy was right - "You have to listen to your body".

I have a CT scan scheduled for Aug 26, but thought if things are going sideways it might be best to form a plan of attack sooner rather than later. As luck would have it, both my GP and oncologist are off on holiday. Thankfully Dr Wadge (the internist who oversees my treatments on the Coast) has just returned from her vacation. Better yet, someone cancelled their appointment at the last minute, so I got squeezed in this afternoon.

As soon as Dr Wadge saw my shoulder and neck, she started talking about radiation treatment. She is currently in the process of contacting the radiation oncologist who treated me in 2008/2009. She also ordered a chest x-ray in case the cancer has further spread through my lungs and trachea. If it has, chemo is likely the better option. If there's much concentration in the shoulder and neck area, radiation might offer some targeted therapy. Should have the x-ray results tomorrow so will know in a day or two which course of action will be recommended.

This journey really is turning out to be a bad roller coaster ride. At least there are pockets of time when I feel well enough to do the things I enjoy.

My "New" House

Drum roll please!

Here, at long last, are the much-promised photos of my "new" house, thanks to all of Phil's efforts. It truly is an understatement to say that it is more comfy than ever. Love the floors - now I can actually see and remove any dust that builds up (carpet never gets really clean no matter how much I vacuum) - cork is really cozy, even under bare feet. And the new counter area not only brings much-needed light into the kitchen, but opens up the whole living room/dining room area, too. The counter is my favourite hangout spot - great for eating, reading the paper while sipping coffee, or chatting with Murphy. Since the cork planks formed a floating floor, Phil had to also install baseboards (a first for this house). Figured while he was doing that, he might as well replace the door frames, the doors, and the window frames. He was kinda like an Energizer bunny, kept going and going. Really! Bedroom and office now have bypass doors rather than the cheap hollow bifolds. Couldn't get bypass doors small enough for the hall and linen closets, but at least they aren't the cheap-o bifolds that were there before. Amazing how little things like door frames and baseboards can dress up a place. Didn't Phil do a wonderful job?

Living room "before Phil"

Living room "after Phil"

 

Dining room "BP"

Dining room "AP"

Entry "BP"

Entry "AP"

In-kitchen Dining "BP"

 

In-kitchen Dining "AP"

Hall "BP"

Hall "AP"

Also installed but not pictured is a handrail down the stairs leading from the deck to the garden. Much safer for both Momzy and me.