chemo 1 of 6 occurs

It was a bit of a surprise when the phone rang two days ago, Monday, July 18th, at around one p.m. It was the booking office of the General Hospital. I had an appointment the next day for Chemo Education Class and an appointment Thursday, today, for chemotherapy itself.


Very happily surprised, I was, because it shows what great hands I am in with Dr.Paul Wheatley-Price. You see today is the exact six week anniversary of my mastectomy/lymphectomy. You can't start chemo till the wound heals, which, typically is "six to eight wks after surgery". I had 26 stitches (dissolving stitches) plus extensive cutting and sewing underneath (or is that sawing? Lol). The largest tumour in my breast was only a third of a centimetre from my pectoral muscle by the time I got to surgery on June 7th, 2011. This aggressive cancer grew seven tenths of a centimetre closer to the pec by the time I had the surgery since the scan was taken a month earlier. (Dr Price had told me that contrary to normal cancer cells that double in size every 90 days, mine grow faster. My cancer, found by me in the last week (a wk before Easter) of April, was removed June 7th.) Very happy Paul (the doc) has gotten me into chemo so fast.


I mentioned in my last blog stuff had to be ruled out. The node on my collar bone/sternum area looks suspicious to the radiation oncologist and he wanted to biopsy it when I met him on the 11th of July. Paul and I both said the puncturing of the body so close to chemo is crazy cos it cannot heal.


Chemo eats the healing cells that are dividing in mitosis to close your wound. Paul went ahead with the chemo. In retrospect they should have booked me to meet the radiation oncologist much earlier while i was healing from the surgery. I could have had the chest biopsy after a CT of the thorax..upper chest ...within the first weeks after my surgery. Oh well. I just got a call right now, in fact, saying the CT is gonna be Monday August 2nd. They offered me one this coming week but then I would miss out on the cottage.


Good news. I don’t have to blame this on a medical mistake (see blog no. 1). I have dense breasts. I will give you the link soon that explains that nobody gets a proper diagnosis via mammography if you have dense breasts. There is a new technology now that will make mammography obsolete. Trouble is there are trillions spent on these machines in all the hospitals.


I am off to chemo now. Talk to you later.


Later


Christine was an absolute angel of mercy today. She spent seven hours with me today. Brought me brunch and we had our Subway sandwiches at my dining table before leaving for chemo. I was an emotional wreck. We talked about the head/instinct war inside me. Head knows I have only a twenty five percent chance to live five years if I don’t do it. Instinct is not to put toxic chemicals in the body. I broke down and got verklempt in the car but soon we were harmonizing to Eurythmics’ Sweet Dreams at the top of our lungs in the car. Today was the hottest day of the year. The forecast was for 37 degrees Celsius (106 Fahrenheit) plus humidex. It was 47 degrees Celsius today.

I was terrified. Nice nurses. I lay on a hospital bed in a “pod” (open room divided by office dividers). The nice nurses poked me and ground the needle under my skin five times. Twice they found a good vein, set up the salt water i.v. and then my vein exploded. One nurse said she had used up her turns at it and was forced to give it to another nurse. Same thing happened to her. They twisted the needle this way and that under the skin and I had to squeeze Chris’ hand hard to cope. Finally they set it up and the vein held.

Next time or so, they told me, I would have a day operation to install a port under my skin directly into the artery nearer my heart, up on a shoulder, as the chemo eats the walls of your veins, makes ‘em too weak for the chemo.
First of my three chemos they pushed into the i.v. was the red devil.

They screwed it into the hanging i.v. port where it met and mixed with the salt water. The red devil (the E in FEC) is responsible for hair loss, which will occur 2.5 wks from now. The next one the nurse had to push into the i.v. bag slowly, via a syringe. This one was the F in FEC. Fleuro. Diarrhea, nausea causer.

The last one was the C. It was hung like the first and pushed into a machine that punctures the tubing and mixes with the water. I had to crunch ice from two freezies in my mouth as stats show fewer mouth sores will occur later. It gives u a sinus flu and by the end I felt my eyes and nose water and tingle. We arrived at 12:50 and left around 4:30. They’d had to do my blood levels first, which from now on I must see to myself within forty eight hours of starting chemo. My next chemo is August 11^th , exactly three weeks to the day from today.


Your blood’s white blood cells need to be at a certain level, and your platelets, too, to prevent clotting. You need to phone the hospital or a dynaclinic lab and get a pre chemo blood test each time. If you are not well enough, blood wise, they push the chemo date back till you have recovered from the last chemo.


We went out into the peasoup heat outside and drove ....and got lost....tee hee...and finally through rush hour traffic (we drove by the mangled bluesfest stage) to the pharmacy where we waited for my five prescriptions on four prescription pad papers to be filled. Bought tons  of other stuff.


It would cost 2500.00 for me to buy the anti nausea drug that works.Chris drove me home and I had water, snacks, and put on a Pre recorded Piers Morgan show in bed, lights off, blinds drawn. Nausea. Nausea. Nausea. A level never before encountered. Water. More water. Two different nausea drugs. Dave was beckoned to come in and lean on me and hold my hand (I feel better, like Temple Grandin, being squeezed under the stress of nausea.) Finally, could not take it anymore, and against Paul’s advice, put my finger in my mouth in the bathroom, and projectile vomited, yelling from behind the closed door to dave to STANDBY!!  


I felt instantly better. We lay with Eiger in the twilit sunroom on the big bed in there and I looked at the pretty flowers in the back garden while I made Dave read me from Time Magazine. Then I went to bed in the dark front bedroom and slept till 1:45 where I wakened and could not get back to sleep, not feeling too well.
I am not allowed to use the same toilet as Dave for 48 hours as my pee is full of dangerous chemicals and will be reddish pink for two days. Lid down, (dogs) bathroom door closed. (Like I asked him for twelve years. Lol)
Hungry but the thought of water, Ensure, or food makes me sick. Nurse coming tomorrow.

i hAs a SiMba GirLfrIend. Dont tell Jaidas.

The 3:10 to Chemo

Sasha, Tutu and me, Fri, July 15th, 2011

In the remake of the Western classic film, “3:10 To Yuma,” the earnest Civil War veteran, Dan Evans, played by Christian “Yummy” Bale, works like the devil, in the service of the angels....(that being the delivery of Russell “Even Yummier” Crowe—Ben Wade—to Yuma, where he can be prosecuted and finally, justly, convicted of all the chicanery that he has inflicted on guys like Dan Evans).

Evans, while dragging Wade to the train to Yuma, reveals something to Wade. He has a bad need for his son, who is offscreen, helping, to see him do just one right thing, to erase the shame that has dulled the edge of (his) husbandry over the years: an act of cowardice he committed in the Civil War.

Crowe/Wade boards the 3:10 train politely; as Evan's son watches, Wade elaborately surrenders his weapon in front of the dying Bale/Evans. Apparently, Wade leaves in the train.

The last thing Bale/Evans has seen, therefore, is justice being done: a justice that makes the dying man a hero in front of his son.As the train pulls away, however, Wade whistles for his horse, who perks up his ears and immediately canters after the running train into the distance.

If I had to name a famous film character whose situation reminds me of mine these weeks, it is Crowe/Wade's. I am so afraid of hurting good people by departing too soon. Just because I get away doesn't mean they aren't heroes for bringing me this far.


On Wednesday, Paul Wheatley-Price, my oncologist, met my eyes with gentle, caring, tenderness as he placed himself on a stool in front of Christine and me. With the kindest of manner, he said "we have entered all the information on your pathology report into our prognosis program. I understand you are anxious to begin all the treatment as soon as possible. Has anyone interpreted your pathology report yet?"
"No."
"If you do no more treatment, there is a 25% chance that you will live five years. In other words 75% of people in your situation die within five years. Now, please understand that with chemo, herceptin, and radiation, the numbers do change in your favour. To what exact percentage, we can't say. You are at stage 3b out of 4 stages. Stage four is considered incurable; palliative. This is what we will call you should your cancer be found elsewhere on your body. You might buy some time there with herceptin and chemo, but people die from stage four cancer."


I know that Christine has seen me collapsing in her arms too many times as I read and researched in the past two and a half months, trying to get the skinny, on my odds. It has been an obsession, trying to find out where I stand. Now I know. I am NOT going to collapse now. I am going to make her proud, and make the doctor learn that telling me the truth is easy to do. If I collapse, he will start, perhaps, to mince his words in future. I need to train him to be straightforward so I am damned if I collapse or cry.


My friend Kate just watched her mom leave this world in the worst way possible. Let's look at the list of the best way first, in order to see just what I mean.


Preparation: Losing someone you love requires preparation. In everything in life, preparation gives you control. You need to feel, have those feelings validated, reflect, abstract from that reflection, develop a context in which to place the anticipated event, and honour it appropriately. To illustrate the importance of preparation in life, I offer you this anecdote.


When I was a university student I earned a loan by volunteering in a daycare for toddlers on campus. PET, or Parent Effectiveness Training, was given me by the director.

"Always go in and warn the toddler a half hour ahead of time, prior to changing his/her activity. Go in and point at the clock and say "toys will be picked up and put away when the big hand is on the top of the clock" Go in again at fifteen minutes to lunch and explain that lunch will be in fifteen minutes. At five minutes to lunch, go in and ask them to help you put the toys away. This prevents tantrums."


I have never forgotten that. It is the difference between screaming, crying, protesting against an event, and working, realistically, towards one. Giving people control of their lives in a dignified way is the best gift you can give.


Kate's mom, dad, and Kate, were not told she was in Stage Four and therefore terminal cancer. There was talk the brain tumour was a separate cancer, even. Until two days before her mom's death, when the homecare nurse happened to show Kate a piece of paper saying "palliative," none including Valerie had any clue that she was dying.

Each event in the previous two weeks was presented phenomenologically to them, by the medical experts, sans context. No oncologist had ever sat them down and given them the significance of metastasis to the brain in the context of it being one of the four organs to where breast cancer metastasizes. Nor of what it means to be Stage Four at all. Was it her age?

I brought up my interest, based on Kate's mother's situation, in having a brain scan to my radiology oncologist and to my chemo oncologist, both of whom I met for the first time last week, and was denied. They insisted to me that despite the fact the brain is one of the four organs hit by breast cancer, cells normally go to the lungs, bones, and liver first.

Yes, they say, occasionally breast cancer metastasizes to the brain before the other three, but NORMALLY it hits the other organs first. Does this seem crazy to you that I can't be scanned for metastasis to my brain? That my liver, bones, and lungs have been scanned but not my brain? Or that Valerie's cancer in her brain is immediately deemed "a separate cancer" simply because NORMALLY the cancer hits the other three organs first? You can be sure none of the doctors deeming it brain, rather than breast cancer produced a shred of proof that it was an entirely separate cancer. Why wasn't this seen as a metastasis, like it would have been had it shown in the other three organs. Why weren't they told this meant she was in Stage Four? That she was terminal, therefore?

Or let's go the other way. Let us pretend there was proof that the cancer was a separate one. The patient had a tumour removed from her brain and it did not go well. Was the danger of the surgery not going well explained ahead of time? Were people properly sat down and made to demonstrate that they actively understood the risk of the operation not going well? If this was indeed a Stage One new brain cancer, the operation was damned dangerous and people should have known what signs to prepare for and what significance was held by what phenomenon they might experience post operatively.

Or......let's go the third way...what if Kate's mom and Dad, while Kate was in Europe, were indeed told the truth at the correct time by the oncologist and radiologist. What if they were not prepared to accept what they heard and did a revision on their way home? I am thinking that telling someone they are in Stage Four when the breast cancer has gone to the brain is standard ops and probably was done correctly. In response to a follow up question of theirs, the doctor may have added a throwaway tag, similar to "or perhaps this is a completely different cancer, who knows" and in the car on the way home this less final statement, being less of a death sentence than a Stage Four cancer, becomes the preferred truth. See Meghan's heartbreaking story, for example, from the blog, "the Bee's Knees" on this exact topic. She too had breast cancer that moved straight into the brain, bypassing the more common liver, lungs, bones.

http://ms-mae.blogspot.com/2010/01/few-more-details.html

www.thestar.com/living/article/829909--unfinished-business-how-one-man-keeps-his-late-wife-s-memory-alive?bn=1www.thestar.com/living/article/829909--unfinished-business-how-one-man-keeps-his-late-wife-s-memory-alive?bn=1


The big hand was just two minutes away from the top of the clock, and they were either unaware, or hiding from their daughter, the fact a clock was in the room at all.


Personal Care: Everyone wants to spare their closest family and friends from some of the indignities of the palliative patient. In my father's case, there was a long, non-traumatic time before he died, for decision making re: who will care for the day to day nappy-changing, etc.


In my case I am going to talk to people at a care facility soon. I would like to set up a file there and one at the funeral home long before my cancer metastasizes. I would like it so that Dave is left by me a list of people and phone numbers to call for the time when I no longer have all my faculties to remember each detail. I do not want him cleaning up bodily fluids. (He will, however, be expected to put away my toys and get me to my lunch on time and he better make that lunch too, for that matter! I insist on animal crackers.)


My sister Rosemary is arranging for my wig. I'm going to start chemo after some suspicious stuff gets ruled out by a week of testing. I don't have a date. Stuff is up in the air. I will have 18 weeks of chemo, a year of herceptin and five weeks of daily radiation. Then that's it. If it comes back it is game over, give or take the borrowed time.


If you hear a train whistle a couple of years from now, stop and listen. If you listen hard you might hear the sound of a dozen dogs cantering after it. And please know I mean YOU, who are reading this blog: Just because I get away doesn't mean you aren't a hero for bringing me this far.