Wednesday, May 28, 2008

not in a bloggy mood

My partner tells me today I am not blogging or twittering enough.
So, here, I will try.
Today is 6 after chemo 4. Otherwise known as halfway through chemo. The last AC treatment sucked and I understand the T ( Taxol) will suck too but in a diff. way.
I am supposed to lie in the chemo room for 4 hours while they inject me with this and that, testing to make sure I am not allergic to things and waiting for 30 minutes each time. The nurse called it a "spa day"!!!! Spa DAY
!?? In the chemo room?
What? is she nuts. There is nothing about the chemo experience that will be anything like an effing spa day!
This week has been rough. I am sssuuuuppppper tired! I slept for 20of 24 hours on Monday.I am a little tired of talking about cancer too. I cannot have a conversation with a grown up without talking about it. Being well known in town means that I cannot go anywhere without talking about it. Sometimes I don't think about anything else, so the conversation naturally goes there, but man there are days when I wish I could hide from it.
So yesterday was a humbling day in a way.
I did not want to get up at all, like AT ALL!!
Strangely at about 7:00am Luke got up and got stung by a bee in the living room and came to lie with me while he recovered from the trauma of his first bee sting. I selfishly coaxed him to lie there a little longer while I languished in the bed a little longer. School could wait right??
After we got up I got him ready for school and had my sore back worked on by my magical Osteopath. I took Luke on some errands to ask for financial help for his summer camp expenses. The chemo and all the drugs I have to buy are taking a very serious toll on my meagre savings. Asking for money- A humbling experience.
After I dropped him off I saw a customer who is also an old babysitter of mine. She asked how I was doing and she said " I support your store!" I said I knew that and thanked her.... then she said " I pray! I support your store and I always donate! Have a great day!"
Something in the passion in how she said it almost made me cry!
I worked all the rest of the morning and afternoon and felt like crap and decided Luke and I would have dinner out because I could not imagine having the energy to cook. I took him to the local roadhouse type place where the food is not stellar, but it is reliable. I bumped in to an old friend there too. At the end of our meal, after seeing a few other people I knew and barking at my kid to sit still and chew with his mouth closed we said good bye to Marla and her family who were rushing off before us- to find out that Marla and her husband had bought our dinner for us!
Humbled- again!
It is amazing, in all my grumbling about not wanting to see people and talk about cancer the things I clearly have in this life are pretty special.

My old pal Howard told me once after he awoke from a coma after a horrible car wreck 2 summers ago how humbled he was when he learned of the prayers for his health and generosity of people toward his family while he was totally unaware. I think I get it. No matter what I am doing, thinking or feeling I have someone taking care of me, thinking about me, praying about me....
See? I told you. Humbling.

Friday, May 23, 2008

quick one

So i am up and all steroid buzzed the day after chemo and thinking of having a selfish day. I will work in the store tomorrow and do some work banking and such today, but I think I will do a lot of MY stuff- cleaning, gardening etc on such a sunny day.
I have already facebooked, blogged, online banked and worked on payroll for this weekend (damn staff, why do they get paid and I don't this week?) and the store is only just opening.
I am going to head up to the garden centre to do a few things b4 noon I think.

Thursday, May 22, 2008

Chemo day

So, today will suck. It is cold and rainy out and I am still a little sick with a "head cold" so being out in this is not gonna happen. So much for my beloved pre chemo walk on the rail trail. I guess I will do a little Pilates, clean the house(having a messy house after I am dopey on chemo makes me mad) and have a quiet morning before Steve comes to get me. Tim is not coming to this chemo, so we will see how it goes. I am used to him being the one in charge, and that role will kinda be left to me I guess.
I saw a new Doc yesterday and got some new meds to help with side effects and that makes me happy. I pray that this time around I will not suffer too badly.
This chemo is #4, which means after it I will be at the halfway point and that the next 4 are a totally new drug. I am looking forward to having either new side effects that are less yucky or not many at all which by all accounts is possible.
I am really tired on this round and I plan to sleep most of the next 2 weeks.
I hate that I will get absolutely nothing done, but this is life.
I will see y'all after chemo, keep your eye on my "twitter" updates at the top right of this page, you will see things happen minute by minute whenever I update from my phone.

Saturday, May 17, 2008

today is a good day

Ok, so I am trying to write something everyday. I wrote a lot yesterday and am only writing today to test to see if I have anything to say.
I feel pretty good today. I don't want to go to work, but I will anyway.
I am already annoyed by how close the next chemo is and how I will have no time to go for my long awaited walk in the woods. I am going to try and squeeze it in though.
I am off for my 5 second shower and to get ready for work...

Friday, May 16, 2008

blethery bloggy blots - side effects and me

See I told you I kinda suck at this blogging thing.
Every morning I have great ideas to blog on about and then life gets in the way and I forget.
I wonder if I could actually make a bloggy date with myself and write everyday... hmmm I will think about creating that discipline... I suck at discipline but I will try.
I had chemo last week and this week has sucked a lot.
They were not kidding when they said the fatigue on chemo is cumulative. I have only had 2, maybe 3 days of the last 8 that I felt good enough to get through a decent day without miserable side effects and exhaustion.
My next and last AC treatment is coming up and I am already freaked out about what the next round will hold. After that I have 4 Taxol treatments which I hope will hold more manageable side effects.
I don't have one bodily function that is acting right.My period lasted 2 days so my hormones are a train wreck.There are great quantities of weeping and emotional outbursts at silly things like the milk being bad. I can't swallow anything harder than bread with no crust because of some inexplicable ouchy throat thingy that makes me feel like I am storing walnuts in my glands. One would think that with the lack of solid food in my diet that I would be losing weight.... but nooooo! I get to gain 10 lbs in 5 weeks from all the fluid and hideous bloating from the steroids. Steroids ! woo hoo! I should be lifting weights and pumping my arms .. workout?? Ya right! I am lucky if I can climb freakin' stairs without being out of breath this week.
Ya, I am bitching, but truly this really sucks.
One thing about my cancer is how hard it is to remember my mom and her cancer. From 2001 -2006 mom did chemo without any break. Her chemo was lower dose than mine, but her side effects were constant... and she was on so many different chemos we never knew what se's she was up against week to week. Mom was very private about her side effects but I knew about most of them... at the time I could not understand how grossly unfair it must have felt to have all of them go on and on. and each with painful, annoying awful one I get I wonder... did she have this one or that one for 5 flippin' years!!?? This part of my cancer has opened up a whole new level of grieving her death. Feeling sorry for her pain in the end, feeling sympathy for her pain through her cancer and dying process as an outsider was part of my grieving because I was her housemate /the primary caregiver to her. This kind of sympathy I did not expect as I started my cancer process. I guess by definition I am feeling both sympathy and empathy for her gamble with cancer. Oh ya, FYI Mom told me a few weeks before she died that if she ever found out we used words like "passed away" "lost her battle with cancer" and or any shit like that she would come back and kill us.
So next time I hear about yet another fund raiser for breast cancer cures I will scream. There is a ton of that, but no one seems to talk about how to help the pain and suffering through the treatment process. Sure there are lots of blogs by people like me, and lots of cancer patients swapping ideas about diet and meds to calm the side effects. This week I wish someone PROFESSIONAL was spending time and effort working on ideas to stop some of the side effects for those of us living through cancer.

Friday, May 9, 2008

The JCC and how the money would have been better spent!

yes,this week I have sucked at blogging. I need a new phone that is blogger easy, so I can blog while away from my laptop. Today is day 2 after chemo 3 (or day 30 of the whole treatment cycle)and I am hiding in my bed with my cat and my computer.
I am a little messed up on steroids so cannot sleep or settle well.
I am saving my energy for getting work done at home and working a long day at the store tomorrow for Mother's day sales.
Todays ranting is from an hour that I sat in the Cancer Centre on Tuesday waiting for blood work. I like the building from an aesthetic point of view and I am sure the lovely staff working there thinks it is a great place. From a patient stand point I don't like it.
Dear Designers, (yes I know who designed the building) here are my rants about your choices and while your choices are lovely and practical and my suggestions may be silly.. take them to heart if you ever have to design a patient care place again. 1) Comfortable chairs in this setting only work well if they are tested to sit on for hours ( yesterday, I had 3 hours waiting for chemo in the same chair, with stiff unfoldabale arms, and a straight back)
2) Granite, Marble and all expensive cold stone looks pretty... but is loud and cold feeling when you have to stare at it for hours.
3) Pretty gardens behind glass are just a piss off, especially when the staff tells you that you cannot go and sit in the lovely garden because the plants are unsanitary...???
4) Live Piano music is great, but a pianist playing sad wartime love tunes really makes things too sombre and sad. I think sombre and sad in the cancer center should not be the goal.

Now, this brings me to my thoughts on how the CC would be more fun for patients.
I think the cancer centre would be awesome if it was more like Ikea, meets Holt Renfrew with Free Rollercoasters and a bouncy Ball Room while you wait.
Free Shopping, amusements and free food of your choosing while waiting for your appointment or loved ones appointments would be awesome. Comfy chairs to lounge in while you watched people laugh and play would be great. You can put the malls and amusements behind glass to keep the annoying un- sterile environment contained.
While you are there, make the hand soaps and hand cleaners fragrance and alcohol free. A Fragrance sensitive environment should really not have cheap soap full of fragrances to keep out hands clean.
Call me at the store if you want help with this part.
So, next time you want to spend insane amounts of money on stone walls and slippery flagstone stairs... spend it on rollercoasters and organic soap instead.
More ranting later on music and emotional states!