Wednesday, February 14, 2007

It's Valentine's Day

We don't do anything extravagant for v-day, but we do acknowledge it most years. Valentine's day happens many times during the year at our house, any time one of us does something special for the other is romantic enough for this gal. I'm not the diamond necklace and roses kinda gal.

I had literally forgotten about v-day until last night. Or more accurately, I'd remember and panic, then forget again. In bed last night Derek mentioned it was v-day tomorrow and I was like, holy shit, I didn't do anything for you, I forgot with everything that's been going on... I never seem to know what day it is. He said, No worries, I didn't get anything for you either. So, this morning D-man left for work at 8:50am and I rolled out of bed at 10:30am to find a cute basket filled with vegan/organic chocolates of different varieties, my favourite tea and another tea that looks yummalicious and some natural soaps. Aw, what a sneaky little sweetheart.

My plan is to make some vegan cupcakes with read or pink hearts on top. I've sent my dad out to get the icing and I'm nervous what he'll come home with. We are also out of sugar so I'm waiting for him to get back home this afternoon so I can borrow sugar. No, he doesn't exactly live with us, I think I've mentioned before that we own a duplex (a 100 year old house converted into two roughly 900sqf 2 bedroom apartments) and he rents one apartment from us. And we live in the bigger one. So anyway, I hope I can finish these cuppy-cakes b/4 Derek gets home. It's going to be quite the feat considering how much pain I've been in, which makes the cupcakes extra special because he'll know how painful it was to make them, but he deserves it and when there's a will, there's a way. I don't necessarily believe that cliche but in this particular circumstance, it works!

So,I'm back blogging. With one hand mind you. That equals slow blogging. Derek got a great deal on a used laptop for my birthday on Feb.7th and I just called today to get the wireless connection and am so excited at the prospect of lying on the couch or in bed catching up on emails and stuff. Sitting at the desktop is painful for me in my back and neck, and if I try using my right hand, even with my bionic arm, I get terrible pain in my arm cuz I have to reach up too far for the keyboard.

Ya, so my 30th birthday was on the 7th. It was definitely different than I had pictured it growing up. Like most people, I think, I thought of it as this huge milestone in life, worth celebrating with a huge party. And then behind closed doors I thought I'd wrestle with all the feelings that I thought go along with this milestone. You know, like feeling old and needing to assess where my life was at and if I had achieved everything I had wanted to achieve in my dream or illusion of of what my life was suppose to be like by age 30. I actually did pretty well on the checklist. That sort of unwritten checklist I think lots of people share, unless I'm just crazy. The checklist that meant you were truly a self-sufficient adult. I wanted to get there, some people avoid it like the plague and want to remain free of responsibility, living sort of free of commitment, never really aging mentally. But I had that checklist and it involved working towards and hopefully achieving the following things by the time I was 30:

  • Finish degree and commit to life-long learning-- I don't want to remain stagnant
  • Find a job that I didn't hate and that would allow me to be self-sufficient, with benefits
  • Find a quality partner. I never wanted to get married and I don't really believe that humans need to commit to each other for life. This is sort of like the Buddhist teaching of impernence: Everything changes and if we can't accept that things change or go away then that leads to suffering. How can we possibly know that 20 years from now we'll want to be with the same person? People develop and expand at different speeds. Why commit to someone for life when this could lead to personal misery? Most people just get divorced these days or literally suffer through a platonic relationship for years because of this commitment infront of God. Of course there are many exceptions and this is merely my opinion. But as we both saw it, we were on a journey together, a ride that we got on and couldn't know when the ride would end, if ever. Why not just go with the flow? Of course all the time hoping that our partnership would last our lifetimes. Neither of us have qualms about having chilren out of wedlock. And we had already made it 7 years when I realized we needed to get married. Derek thought I was joking. We got married because no one took us seriously when we said, This is my boy/girlfriend. They didn't know if we had only been together for 3 weeks so we had no right to speak on each others behalfs. Derek had no right to advocate for me in medical situations. Now he can. Doctors talk to him if I'm drousy etc., the take him seriously and allow him to speak on my behalf and make decisions. It came down to, we were ambivalent about marriage, so why not just do a very secular wedding and throw a backyard party. It was also a sneaky way to get ALL our friends across the country to be in the same place at the same time.
  • Buy a house
  • Have a baby

So, I did everything except have the baby, but it doesn't really matter because I have cancer. Yes, I'm blessed to have such comfort and security having long-term income protection and heath benefits. I'm so blessed to have the best husband in the world who friggin' does everything for me if I'm feeling shitty or in pain. He makes sure I'm comfy, cleans the house, literally comes home from work, asks me about my day, starts dinner, and fixes up the house before he gets to relax. It's not fair. But he says he doesn't mind, refuses my thanks and still showers me with kisses and caresses. I said the other day how sorry I was that we haven't made love in so long due to surgeries and pain and my hang-ups about being ugly with visible tumours and he said something like, "I don't care about that at all. We make love everyday in different ways. Sex is such a small part of what makes our relationship so please don't worry about that." Sorry if that was TMI but I wanted to document that for myself. See what a sweetie-pie he is? I'm sooo lucky! That doesn't mean we don't have spats once in a while, but it seems that when I'm sick or in pain he kicks it up a notch and we don't argue. Probably too cuz I don't have the energy to nag. I'm pretty darn lucky to have him. How could I possibly go through this without him? It would be truly horrific.

Woops, I went on a tangent. I'm trying to make a point and that is, I don't feel old, I feel too young to have cancer. Too young to have to face such torture and pain. So many people hit 30 and freak about the number's significance to them. I thought I was going to be like that, but since I was dx'd at 27 I have just begged the universe to let me live that long. It seemed so far into the future considering the terrible statistics that went along with my dx. Was I, could I, possibly make it to that marker? And I did! And instead of wanting to party about it (believe me, I was in no state to party anyway) I just kinda wanted to sit with it, be grateful for it. Derek made me a vegan chocolate cake and I got visits from friends and family with prezzies and flowers. It was perfect and I can't see it being any other way--low key is my new status. And ya know what? If I can do 3 years than I can do 3 more and keep running with it!. I'm back in cancer ass-kicking mode and this IL-2 will work for me!

In other cancer news:

  • Still waiting for my IL-2 date. I was so hoping it would be this Monday (19th) because I have had all the tests and scans done.
  • I'm worried that my scans weren't good and they are thinking about palliative alternatives. I hope hope hope that in the month since my last scan thing haven't drastically changed. Yes, I've called the doctor, talked to her nurse who had no idea London was taking care of things cuz the last thing she heard was that Toronto was doing all the paper work. She asked me if I had the results of the scans to which I said no and she said she'd talk to Dr. Bitch and call me back. That was yesterday afternoon. I'm going to harass her again as soon as I finish this entry. Edit to add: I got word today that I will get a letter in the mail tomorrow saying I have an appt. within 7 days for Buffalo. I think the letter will have the exact date. Woohoo!
  • We went to Ottawa this weekend (Fri-Mon) and stayed in a cute hotel called the Bostonian which had only suites with full kitchen-- I'm talkin' dishwasher too! And only $110/nigh at a km walk to the parliament buildings and many of the attractions Ottawa has to offer. We saved a lot of moola cooking our own food, and Granny, who lives in Ottawa paid for the suite as well as my dad. Very nice of them to allow us this mini vacation. We were concerned about my pain level but decided it would be "funner" to be in pain at a hotel then at home. Saturday I exceeded my expectations and was out and about doing the tourist thing a good part of the day. I was in pain the whole time but with breaks I was able to go on. Sunday though was a whole other story. I coudln't get comfortable during the night cuz now it is getting increasingly hard to even sleep on my left side cuz of pain. My left side was the only position I've been able to semi-sleep in for a month. By the morning I knew I was out of commission for the day, possibly b/c I over did it the previous day. Derek went exploring by himself for a few hours while I slept. At bed-time, I was in so much pain I was rolling around crying and being a total bitch because Derek wanted to help so bad but there was nothing he could do... I just wanted to try to find a position on my own. After about an hour of this I said, I'm going to emergency, I can't take this. So we took a cab to the hospital, I was triaged in like 30 seconds--it's amazing how fast you get in when you say "stage 4 cancer pain"... I'm thinking some dude out there with a broken leg waiting for 4 hours to see a doctor could be in just as much pain as me and I get in so fast? It's not fair, but as if I would speak up and risk losing my spot!-- Anyway, we decided that I would stay over night so I could get i.v. morphine every 1/2 to 1hr. (which, btw, just took the edge off enough to get a bit of st-eye for an hour or two at a time) and Derek would go back to the hotel and get a little sleep. This was at 3am mind you. It took so long because there was a trauma they had to take care of first. You should have seen Derek's eyes, they were so bloodshot cuz he was so tired, sitting in a regular office chair for 4 hrs. but all he cared about was me. God, I HATE doing this to him. But I'd be screwed without him. No one knows how to take care of me but him.
  • Obviously pain meds aren't working. Pain onc has been fiddling with my meds ever since they stopped working about 3 weeks ago? Nothing is working. Every 3-4 days we change something, double something. Nope, not good. Can't sleep, can't drive, can't cook, can barely get dressed, can't clean. How's that for quality of life? If what I'm on now doesn't work by tomorrow morning then I am likely going to some kind of drip. A tube will be inserted into me, attached to a little baggy that is programmed to regulate dosage. Not sure what drug. I don't like the idea of it just like I didn't like visible tumours on my body. I want to avoid looking like I have cancer so I don't have to identify with it. In my mind, I am a healthy person, healthier than most people, the doctors even refer to me as a "healthy girl" -- hey, now that I'm 30 should I insist on being called a healthy woman?-- except this physiological error happened, something that is not a part of who I am. I feel invaded and I feel it wasn't meant to happen. Ah, well, I must do whatever will make me comfortable until we annihilate this nasty, unwanted, disease from my body! I'll get over the bag within a few days I'm sure.
  • Tumours are taking over. No longer just on my right side, the cancer has made home in many different places and I feel a new tumour almost everyday. My left neck, my stomach, my upper groin area, my back, more on the right side. That was heavy news to swallow when I felt the first one in a place other than my right armpit, shoulder, arm or breast. Whatever though, I'm still fighting this beast down to the ground. I will be on the good side of the stats. Why the hell not? Now I just wish my medical "team" treated me like that was possible too.

I think that's it. The fact that I even wrote this is a sign of progress. But, it really ain't fun typing with one hand. My totally sincere apologies to any one I owe email responses to. I literally have only been logging on to the old 'puter once or twice a week and not for long b/c of pain so I try to respond to emails by earliest date. I think it'll be much better when the wireless laptop is hooked up sometime next week.

gotta go finish those cupcakes-- eek, the bottoms got slightly burned, but it's the thought that counts! I'm no Martha. Nor do I want to be.

Tuesday, February 06, 2007

It's not just a grandpa disease

I didn't know this brave young woman from B.C. but her mother has posted on another site that in her daughter's honour, she'd like to get her message out. Please take a moment to click the link below (Ceri's name) and listen to Ceri's message because even in death her voice is still strong and able to continue educating about skin cancer and the possible dangers of the sun.

R.I.P. Ceri Elizabeth Smith 1986-2007