Am feeling much better this evening. My body is pretty much recovered from the reaction to the asthma/reflux meds (for what the respirologist called 'vocal cord dysfunction' - imagine, me with dysfunctional vocal cords) as well as the battering it took during the "up and down scope" test of my digestive system. Mom will head back to her place tomorrow so I will have a day to myself before Dave & Stephanie take me in to the Cancer Agency on Mon for the first meeting with my new oncologist (my regular one is on a 6-mon leave so I'll be seeing a locum).
Continue to see a lot of humour in all of this. Not just re some of the language surrounding the various tests and treatments, but also re the peripheral stuff. Which brings me to the exploding yogurt container that Roz/Yoriko mentioned.
Picture it, 8am on Thurs am. I am waiting on a gurney at Lions Gate Hospital's radiology dept where I was sent for a bone scan (no such equip in Sechelt). A young med student was assigned to accompany me and keep me out of trouble until the time to return to the ferry and the Coast. Since we headed in on the 6:20am ferry from Langdale, Jerry (my caretaker) had no time to get breakfast before meeting the transport ambulance as we set out for the early ferry. In his haste, Jerry picked up the easiest to transport item from his fridge. It was a large container of strawberry yogurt. It is unclear what caused the contents of said container to build up during the trip into North Van. There was no indication of any potential problem when Jerry pried the plastic lid off the container, nor when he made the initial tug on the foil sealer. HOWEVER, the pressure that built up inside the container was such that, when the foil sealer was finally pulled back enough to let air in and contents out, the ENTIRE contents of the container literally exploded into the radiology waiting room. It hit Jerry square in the face, covered his hair, clothes, shoes, hit the ceiling, walls, floor, and managed to take in a fair bit of the thin blanket that covered me as I lay helpless on the gurney. It happened so fast, neither Jerry nor I could do anything to stop it. And we remained in rather stunned silence for several minutes after the event. I suspect bright pink ooze continues to drip from the ceiling and can only imagine what the cleaning and building maintenance staff think might have produced the guck!
Funniest sign I saw while riding upright and backwards in the ambulance (a long-time wish of mine by the way - and it was sooooo cool!): An electronic sign at the Horseshoe Bay ferry terminal flashed an enthusiastic "Go Canada Go" followed by a more reserved "max 20kph". Obviously the ferry corporation isn't interested in all aspects of the Olympic higher/stronger/faster credo.
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Emailed on March 7, 2010
I am only at the computer for a bit off and on throughout the day. Easier for me than talking just now.
I head into the Cancer Agency tomorrow to meet with my oncologist (a locum as my regular oncologist started a 6-mon sabbatical on Fri). I suspect it is just a one-to-two-hour visit, but since everything is rather fluid just now, I may be wrong about that. I do know there is an appt being made re installing a port-a-cath - veins in my arm are too tired from the last chemo to participate this go 'round (IV slipped out twice while in hospital last week).
Penny was with me when I received the diagnosis. At that time we both understood that it was one lung and the spleen. I don't know about Pen, but I thought it was only one spot on each. Turns out both lungs are involved with multiple sites on each. As for the spleen, it too has multiple sites and is distorted in shape from all the cancer it is trying to deal with. So, both lungs and all of spleen. Hence the inoperable call.
I have been given a brain scan (yes, it is true, I have a brain as the test clearly shows) and both an "up and down scope" of my entire digestive system. All looks well on those fronts (backs?). My liver and kidneys also appear to be clear at this point.
I was sent to Lions Gate for a bone scan as bone is one of the most common areas for breast cancer cells to migrate to. Given that my initial site was close enough to the chest wall to require a cut into the wall in order to remove the original cancer, and given that my spleen and lungs are now involved, it was felt that a bone scan would let us know if it is also in my ribs or other bone.
It's hard to explain, but I had a feeling from the time of my initial surgery that all would not be as it seemed. I found the enlarged lymph node in my neck about three months ago, mentioned the abdominal pain at least as long ago as well as the fatigue and shortness of breath. The extreme (for me) edema appeared a couple of weeks back. None of these things was present at the same time, so nobody was connecting any dots. Besides, all were easily explained by the previous cancer, scar tissue from the earlier surgery, side effects from the removal of so many lymph nodes, and my general weight gain.
I do not believe anyone has been the least bit negligent. I simply had one or two very strong cells that struck out on their own and played a game of hide and seek with all the follow-up tests. C'est la vie. It is what it is.
Except for having a very raspy voice and some abdominal discomfort, I feel quite well. I have nothing that can be called true or frank pain. The only time I had pain, it was more like a severe dull ache and was due to my inability to tolerate the asthma/anti-reflux meds I was given. I have easily lost 10 lbs, although Weight Watchers or Jenny Craig would have been my preferred method. About those asthma/anti-reflux meds: they were what landed me in hospital last week, so I'm grateful for having had them as they help uncover the spreading cancer.
Oh, about the yogurt. I'm sure the laundry staff at Lions Gate will marvel at the condition of a certain blanket and sheet that enters their care. Personally, I would give much to be a fly on the wall when the hospital's maintenance crew tries to determine the source of the pink ooze that is dripping from the ceiling - I swear Jerry tried to wipe it all off, but was too short to reach the ceiling. I am most thankful that there was nothing left in the container for Jerry to eat - I'm not sure the result of that would have been nearly so funny. As Pam Salisbury says on the Jan-o-blog that Roz set up, it will be interesting to see if Homeland Security lists yogurt as a potentially lethal weapon. Stay tuned.
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Emailed March 8, 2010
Hi, all. Hope this installment finds you well and enjoying the first signs of spring (sorry if that is a hurtful nudge to those of you in eastern climes).
Operation Oncology official kicked off today. Dave and Stephanie kindly gave me a ride into the BC Cancer Agency where I met with the lovely Dr. Sophie Sun, the locum for my regular oncologist Dr Lohrish. She confirmed much of what I know already - several nodules on both lungs and spleen BUT liver, kidneys, and pancreas all very happy and healthy. Dr Sun also ventured to tell me that the brain scan was quite positive in that grey matter was definitely located within the confines of my humble cranium - although she failed to mention whether it was functioning on all cylinders - and that what was visible was wonderfully perky. She made no mention of the small void left in the cerebral cortex from a single teenage encounter with Johnny Walker Red Label (thanks to Jon Bell for enlightening me re the wonders of single malt whisk(e)y).
Dr Sun has offered up a palatable plan of action. First, I will be provided with a custom-installed port-a-cath to ease the demands made on my ever-decreasing collection of willing veins. I will also receive a MUGA scan to ensure that my heart is up to taking on the recommended chemo (one drug, which I've taken in the past, is especially hard on the ol' ticker). I will then receive two drugs via IV. The drugs are Trastuzumab (Herceptin) and Vinorelbine (Navelbine). The schedule for Vinorelbine is one dose every week. Trastuzumab is generally given once every three weeks, but in my case the dose will be broken up so that it can be administered at the same time as the Vinorelbine. There will be four weeks in each cycle of this cocktail, i.e. one dose of the two drugs once a week for four weeks. Dr Sun will order another CAT scan after two to three cycles (8-12 weeks later) to gauge whether or not the drugs are having any effect. If they are, the drugs will continue to be administered on the established four-week cycle. If, however, there is little or no change, I will be switched to oral medications (Capecitabine + Lapatinib/Tykerb). Good stuff about these drugs: the potential affect of Trastuzumab on the heart aside, there are few other likely side effects. Vomiting, diarrhea, and rash are the most common. Bonus: All these chemo drugs can be administered on the Sunshine Coast thanks to the wonder known as Dr Sara Wadge. So, easily tolerated drugs that can be administered close to home. Not a bad plan, in my view.
Did manage to get a few other "chores" done while in town. Dave and Stephanie needed to stop by Granville Island to replenish their larder. I took the opportunity to drop into the studio for a quick "hello" to Yoriko. So nice to see her.
Note to Vancouver food lovers: There are two interesting food outlets in the 4100 block of MacDonald St (location of La Buca, for those in the know). One is the Patty Shop which, according to Dave, serves up the best Jamacian patties in town - he came out with a pizza box filled with an assortment of the yummy-smelling treats (too spicy for my tender tum). There is also a Chinese bakery where Dave purchased hot-from-the-oven red bean paste buns (excellent). We also wandered through a very interesting grocery store that had all manner of imported foods, largely Asian.
Very tired when we finally got home. Had a good long nap to replenish my battery. All in all a fun day with fine company.
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Emailed March 9, 2010
I just received a call from Dr. Wadge's office informing me that my bone scan is clear. Woohoo! So, in addition to having some degree of grey matter, I have a skeleton. What more could a girl ask for?
Actually, I knew I had a skeleton. I saw it with my own little beady eyes as the result of a wonder of modern science/medicine. Remember when I was in Lions Gate Hospital last Thurs? Well, the exploding yogurt container was not the only entertainment. I had actually gone there to have a bone scan - something that is unavailable here in Sechelt. Since I am no longer lying flat, I had a massive coughing fit in the middle of the scan. The concern was that I had blurred the image to the point that the scan would have to be repeated. The way the tech determined that the images were good was to "translate" the scan into a low-res image on her computer screen. The image was still up when I was leaving the room, and she let me take a look. It was amazing! What I saw was the skeletal portion of my torso rotating as if it was propped up on a lazy susan. There was another image, one that showed a bird's-eye view through my spine with the ribs and other bones radiating out from there. That image rotated in relation to the view of my torso. It was a wonderful cyber ballet, a pirouette that Pierre Trudeau would be hard pressed to compete with!
The technological representation very much reminded me of the first computer program I ever used. It was when I was working at MPR and was preparing various reports for the manager of business development as well as the three vps (remember, Don?). The program I was using was called UNIX with some sort of added feature program we called troff. What I did was input a list of letters and numbers, most of which were preceded by a dot or dash. Once inputted, the list would be translated by the computer into a bar chart, a pie chart, or any number of similar graphics. It always seemed like a bit of magic to me when the resulting chart appeared just as I had envisioned it. Ah yes, the cutting edge technology of the mid '80s. How odd the method I then used to create slides from computer images: I literally attached a 35mm camera to a device that was attached to my computer and clicked the shutter. I processed the slides in a special little box that I kept at my desk. If transparencies were required, I sent the computer file to a plotter that drew out the image using a series of different coloured pens - the plotter was sort of like a printer but one that allowed me to watch each line being drawn and each time the pen colour was changed. I still think this stuff is quite cool, and rather miss the wonder of it all with the instant nature of current technology.
I continue to be quite comfortable although my voice seems to suggest otherwise. Pain has yet to show up to the party - thank goodness its invitation has been lost (bless you, Canada Post). I remain somewhat fatigued by yesterday's adventures, but am seriously thinking of approaching my loom this evening. Managed to catch a glimpse of the snow fall today, the first of the season. I love to watch snow fall, and was missing it this year. At least the Paralympians will have a softer ride than the Olympic competitors. As the sign at Horseshoe Bay ferry terminal said, "Go Canada Go". And I give all the athletes permission to go faster than the posted 20kph limit!
******** Emailed March 9, 2010
Just thinking of my felt Gregori (felted angels) and this song came to mind. Thought I'd share:
Jane Siberry with k.d.lang - Calling All Angels
Santa Maria, Santa Teresa, Santa Anna, Santa Susannah Santa Cecilia, Santa Copelia, Santa Domenica, Mary Angelica Frater Achad, Frater Pietro, Julianus, Petronilla Santa, Santos, Miroslaw, Vladimir and all the rest
a man is placed upon the steps,
a baby cries
and high above the church bells start to ring
and as the heaviness the body
oh the heaviness settles in
somewhere you can hear a mother sing
then it's one foot
then the other
as you step out onto the road
how much weight?
how much weight?
then it's how long?
and how far?
and how many times before it's too late?
calling all angels
calling all angels
walk me through this one
don't leave me alone
calling all angels
calling all angels
we're cryin'
and we're hurtin'
and we're not sure why...
and every day you gaze upon the sunset
with such love and intensity it's almost...
it's almost as if
if you could only crack the code
then you'd finally understand what this all means
but if you could...
do you think you would trade in all the pain and suffering?
ah, but then you'd miss the beauty
of the light upon this earth
and the sweetness of the leaving
calling all angels
calling all angels
walk me through this one
don't leave me alone
callin' all angels
callin' all angels
we're tryin'
we're hopin'
we're hurtin'
we're lovin'
we're cryin'
we're callin'
'cause we're not sure how this goes
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Emailed March 12, 2010
Hope this note finds you well and enjoying our odd weather. Snow here this am, bright and sunny (with a few clouds) here now. Trust winter to arrive just as I'm getting the veggie garden started.
Sorry for not being in touch for a couple of days. It was party, party yesterday a la birthday celebrations. Many thanks to Marcia for the lovely lunch - not sure who enjoyed it more, Mom or me. As friend Cathy has informed me, at age 52 I can honestly consider myself a full deck. Given that I have rarely played with a full deck, that will be quite the accomplishment. And, no, I don't intend to play 52 pick-up any time soon.
Plans for my immediate future are ticking along. I saw the stand-in for my new GP (Dr J - who was away for spring break) last week. He just wanted to go over all the test results with me and try to answer any questions I might have. I knew all the test results already, know what chemo will entail, even know how I'll feel taking one of the drugs as I've had it before, so no surprises there.
I am now booked to have a short pre-chemo consult with St Mary's Ambulatory Care on Monday. Will be a chance to meet the nurses who will care for me during treatment sessions and to ask any questions re procedures that might vary a bit from those at the BC Cancer Agency.
Chemo is slated to start on March 17. I do hope they forgo the St Patty's Day spirit and refrain from adding green dye to the drip! If they did do that, would it make my skin green like the petals of a flower soaked in water that has been dyed with green food colouring? Jaundice would have nothing on me!!
Roz, Edith and the dog (Whoopie) are up and staying with Mom. I hear a grand birthday dinner is planned at Jon and Penny's farm tonight. Jo Ann, Cathy, and Linda arrive tomorrow with cake in tow. Oh how I love a progressive dinner!
Must remember to turn the clock ahead on Sat night. I see there is a new moon on March 15 - how will that affect the Ides of March? Hmm.
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