......a week off!

This seems to be the beginning of a week's respite. Hilary is feeling better now than she has for two weeks, no Prednazone or Neupagen for a while to which there are seemingly some unpleasant side effects. Her mouth is still swollen but the sores seem to have dried up. Now, at least, she's eating....trying to put some of the weight back on. Roast beef and Yorkshire pudding (what else?) does the trick!!

She actually went out last night, with Krista, to a meeting of "Look Good Feel Good" a support group.......all the way to Brampton......definitely south of Major Mac!! She enjoyed it and got a lot out of it. It's usually just a one time event and concentrates on the cosmetic side of things as treatment progresses. She's even talking about hitting the range and trying to hit a few balls......we'll see!

Soooo, like I said, a week orf!! Back into it starting Aug 25th. The only med she's taking just now is something to control the Uric acid build up but there is no apparent side effect to this.
Next week Rosemary is taking her to the hospital. This last week she got flowers and cards from various folk and fantastic cookies from Nancy.....there's only two left!! The cookie monster strikes again.

..........Botox it ain't!!!

Just a brief update on Hilary. Other than her mouth being covered in sores, her lips all swollen up (definitely not Botox) being exhausted most of the time, not getting either much sleep or food......coz of her mouth, aching bones and a lousy stomach she's doing fine!

I'm getting good at giving her a daily needle, rotating between each arm and the belly plus I had to do an Excel spreadsheet in order to manage her regimen of meds! I don't think she even feels the needle!! How do they make them anyway??

She's trying to get protein into her as she's losing weight again.......my cooking skills are definitely an advantage now and we're trying to eat the same things.

She has a few more days of the "needle" Neupagen at $550.00 per shot plus some pills for the mouth issue and that's it, so to speak, until Aug 25th. On that day she has a load of Decadron to take and get some bloodwork done then, the following day, back down to the hospital where they will try and get the Rituxan into her again. It was this drug that she had such a severe reaction to. (poor English!) After that the regular chemo and start it all again.

Luckily, right now anyway, the tennis is on at the Rogers Centre so she gets to watch that plus the PGA is on....keeps her mind of things. She's snoozing a lot during the day too.

So......one day at a time. Some days are better than others. Tis what it is!!

.....my love is like a red,red rose and so is Hilary's pee.

As eventful and unpleasant as yesterday was, today was easy.......so far anyway.

Down there in twenty minutes and out in two hours!! Great. The Zofran seems to prevent nausea. May it continue to do so

One of the elements makes you pee bright red for a few days. You even have to carefully clean the can otherwise it stains the porcelain apparently. If it does that what an earth does it do to your insides?? Hmmmmmmmm.

I talked about one of the drugs being made of gold. Found out some facts today. It's called Neupagen. Builds up your white cell count apparently. $4500.00 a cycle and Hil has 6 cycles. I estimate that the eighteen weeks sucks up about $75,000.00 in drugs alone!! Thank God for a Provincial Health Plan. Surely the American man in the street who votes against a National Health Plan has been brainwashed by the drug companies, insurance companies and private nursing homes. (Minor rant...LOL)

Hil, right now, feels fine. Tired but not throwing up. She'll have a regular dinner, see what that does to her insides.
We were definitely the minority group in the chemo clinic today. I think it was oriental day. They definitly do NOT bring sandwiches for lunch. Their lunches looked MUCH better!!

So back on Monday for a short visit. Several days of needles and pills then some time off. August 25 is bloodwork. August 26th do it all again.

So far so good!!!

one small step for Hilary....one giant step for the drug companies.

Well today was an oh so long day at chemo......over eight hours!
Just Hil's luck she had two allergic reactions to one of the drugs.....Rituxan....the first being almost immediate. She overheated, she turned bright red and she had severe pains from her head to her arse. Turned that one off in a hurry. Plan "B" push a ton of steroids into her and go back to Plan "A" Two hours later she gets the shakes and she's freezing cold. Top of that she's going to the can every twenty minutes or so. Gotta be a happy medium somewhere.
Plan "C" push Benedryl into her and go back to Plan "A" but at a much slower rate.

Lovely day so far.

Cut a long story short.....they got a third of the Rituxan into her which took all day instead of a full shot in two hours or so but not the rest of the chemo. Net result is we go back tomorrow for the rest of the show and back again next Monday for a needle of Nupogen which I think must be made out of solid gold!!! This stuff is so expensive that neither the hospital or drug stores can dispense it without Provincial Health authority. Can you believe that!!

I watch all this stuff being pumped into her and wonder where it all goes!! You'd think she'd blow up like a balloon!!

End of the day we drive home, go to the drugstore with our shopping list of drugs and pick up the dog...............who promptly throws up all over the broadloom. A fitting end to a memorable day.

Right now Hil just feels tired but, so far, not nauseous. Of course the rest of the chemo goes into her tomorrow. So we'll see what that brings.

Hil is so greatful for the support she's been getting.....phonecalls....cards.....flowers and the offers of help if needed. Vastly appreciated. Thank you.

Stay tuned.

.......and so it begins.

Another half day in the hospital yesterday getting the results of the biopsy done a couple of weeks ago. Now we go ahead!

Hilary starts her chemo next Thursday August 5th. She has opted for an agressive treatment after having being presented with the options. Apparently the side effects are worse but the prognosis is both better and much faster. Short term pain for long term gain we tell ourselves.

The chemo itself is quite protracted. Day #1 is a full day in the hospital. Days #2 thru 10 a needle every day, given at home. Days 2 thru 5 pill (Pregnazone). Every day another pill to control the build up of uric acid. By now 11 days have gone by. Ten days later she starts the cycle again................for eighteen weeks......into December sometime.

The normal side effects, as described, are not very pretty but everyone reacts differently so we'll just have to see......crossing everything that can be crossed. At least now we have a parking pass so it's only $2 instead of $15!!

Impossible to plan anything now. Golf goes in the bin with the tennis. Pretty much guaranteed that for two weeks out of every three she's going to feel pretty crappy.

Side benefits are my shopping and vacuming skills are going to improve.

It is what it is so one day at a time.

Does it glow in the dark

THE FOUR STAGES OF LIFE !

July 6th. 43 degrees with the humidex outside! Well of course it wouldn't be inside would it......unless the AC quit. I wonder how big the unit is that cools the hospital? Hmmmm.
We went at a different time today, a little later in the day. A marked dearth of volunteer birdies, sitting on the line, in their green vests just itching to help. Must have been a tea break......grab a quick smoke......off prem of course.

So where are we? Rather where is Hil with me just sitting in the right hand seat helping the pilot so to speak ?
The next stage is a physical biopsy of surface lymph nodes in the inguinal area......medical term for crotch!! Takes about two weeks to organize then about another week to get the results from Sunnybrook. Then more blood work....."an armful" as Tony Hancock said.
After that it's chemo! A cocktail of CTV (whatever that is) plus Rituxan plus Pregnazone. This occurs once every three weeks for three cycles. More tests after this including further CT scans. If everything is OK they will do three more cycles then more tests including another bone marrow biopsy......Hil's delighted with that one! At least there are no more allergy shots in the forseeable future. The Pregnazone does the job.
Apparently we can expect the usual side effects of the chemo but I'm sure it'll be worth it. She really doesn't look forward to being a bald tennis player! Probably won't happen though. Her hair is too thick.

Down in the bowels of the hospital where I'm sure people would glow in the dark if the lights went out there is a sign on the wall:
"YOU ARE ON THIS FLOOR."
Well thanks for letting us know we didn't know that.

Three people sitting next to each other all talking on cell phones......hopefully not to each other. All three right under a large notice that reads: USE OF CELL PHONES IN THIS AREA IS PROHIBITED. Doncha just luv it!!

Women arrive looking dapper. The middle aged (in certain cases anyway) well supported by support hose, control tops, well wired bras. Then they change!! No more artificial support of any sort just the hospital gown. A sudden exercise in reality. One lady, wearing the grey/green, had also attempted to cover her legs with another gown which she had tied around her waist. Unfortunately the arms were dragging on the floor!! Use your imagination.

Hil misses the tennis, gets tired and has night sweats. Other than that....she's still Hilary. Life goes on. More swimming perhaps. Maybe she'll bike with me a bit. We golfed together the other day......her game is definitely improving.

Hospital

When I was young......a lot young........I remember, in primary school, there being an ant farm in a glass case in our classroom. At that age and at this I had and have little interest in bugs of any kind. What I do remember is their industry. They were everywhere......scurrying all over the place. Fetching and carrying ........always seeming to have a purpose, always seeming to be organized, although without a union but obviously having some end in mind. Gathering food, some in construction, some merely and apparently socializing but all doing something.........workers, soldiers,drones.



York Central Hospital reminded me of the ant farm. Different groups in different uniforms, many out of sight......doing "their thing" behind closed doors. Different departments on different floors.
The same guy, in his grey uniform, driving the floor cleaner seemingly in a trance. The same lady, in her hair net, dishing out food in the cafeteria somewhat reminiscent of British Rail......caught having a fag later on her tea break!!

A line up of volunteers, in their green vests, at the main entrance waiting to pounce on anyone who gives the smallest impression of being lost.



Come tomorrow, Tuesday, Hil and I will have been to the hosptal three times in five days. Forty five dollars in parking and several excursions to Timmy's on the main floor.



Tests, tests and more tests......Hilary just takes it in her stride and gives me all the details after the fact.

What strikes you immediately is the friendliness of the staff. They seem to make a specific effort to put you at your ease. I guess it must come with the territory. Some departments must be pretty scary places causing your imagination to go to places you might not want to go it being human nature to think the worst.

Down in the basement, in C-Wing, is the nuclear department! Super friendly people in white coats.........super worried/looking people sitting in uncomfortable chairs seemingly waiting their fate.

Spok would love this place! I peeked in a couple of empty rooms. No wonder the health system is so expensive! No cell phones down here......no laptops. You almost expect the staff to be glowing blue and purple under the indirect lighting. Nuclear warning signs everywhere.

Gallium Scan!! Sounds like something the Enterprise would encounter in outer space, perhaps some sort of transportation device........beam me up Scotty!! Looks that way for sure. An overgrown doughnut that revolves around you once you have been inserted so to speak. Painless of course......taking pictures outlined by the radioactive milkshake injected into your bloodstream three days prior.....just part of the routine. Hilary was strapped in and told to hold still for twenty seven minutes. Her nose itched!



She's on the golf course this afternoon. She can't play tennis but her golf game will improve. Back to the ant farm tomorrow........another fifteen bucks for parking but we shouldn't be there too long this time, just some additional tests.