Update by Derek

As you will all probably notice this is not Sarah's writing. This is her husband's attempt at an update, sorry no descriptive flowing prose, but blunt mis-spelled statements.

Sarah's week in Buffalo(mar 18-24) had it's ups and it's downs. Starting with the positive, she received 13 of 14 IL-2 doses, she showed an unbelievable ability to cope with a treatment that most can't handle very well. This is the reason why we're there, so we'll take as much as we can get. So understandably those kind of numbers mean swallowing some harsher, more prolonged side effects. These side effects appear and took there toll and some still continue to linger, but I'm happy to say since today(mar 28th) Sarah is feeling kinda normal, this is after a 7 day period of no solid food, a week and a half in bed with scary thoughts, hallucinations and confused states/dreams that melded with reality. It was really tough on her, questioning her own thoughts and working through them , separating real and the imagined. She did it, again just like last recovery, fought her mind/drug and won again.

She still can not keep her food down and suffers from out of the blue massive headaches, but she’s speaks like her lovely self again, laughs, cries and lives like her self again. Her independence is on the horizon, her walking has improved and energy level is way better, still low but on the mend. I know she's had enough of my version of mothering and needs a break.

Sarah's one in a million, so strong and special it's beyond words, I realize a lot of you only know her through her blog, and this represents her well, but let me tell ya the world has far too few people with Sarah’s love, thoughtfulness and strength. Keep thinking of Sarah, she's a fighter and in the midst of a battle.

Derek

Rest In Peace, My Strength, My Angel

Heather died. She actually died. Heather was my strength, I felt like she took me under her wing and encouraged me along the path. I knew she was doing bad. She lived in Buffalo and I was going yo call her on the day she died, to see if somehow I might visit with her, even though she was bed ridden. But, I chickened out. I was afraid she'd be too sick, that we wouldn't be able to coordinate it anyway with me being in hospital. So, I guess her funeral must have been while I was in Buffalo. If I had known, I would have gone in a heartbeat.

I loved Heather, her wit, her will, her determination, and her constant ability to put her own woes aside and offer advice and an ear, I spoke with her once, around US Thanksgiving. She said we were kindred spirits and I believe it. But Heather was 1000 times stronger and braver than I. Only 39 with 4 kids and a hubby, struggling financially and then with the beast. She was diagnosed the same day she gave birth to her last child not even 2 years ago. They noticed a suspicious mole on her leg as she was birthing. Unbelievably unfair. But, now she is a soaring angel, and as she was a huge part of my strength in life, she will remain so in death. I know that if Heather could do this thing, so can I.

Pleeeeease take time to read Heather's blog from start (July) to finish. I guarantee you will never be so uplifted and inspired.

www.livingwithmelanoma.blogspot.com

RIP March 2, 2007

Back from round 1

Jesus, what can I say? I feel like utter shit, I'm not gonna lie, but coming back to my blog and reading all your messages of encouragement bring tears to my eyes (my mom's helping out at home right now so I'm trying to hide the sobs-- not time for the folks to know about this place yet) as I am reminded that soooo many angels are out there pulling and praying for me.

It's been so hard. IL-2 was better than expected the first week as some had told me it would be. My only symptoms were utter lethargy and drowsiness. None of the horrors I had read about. The torture was laying in that same bed, staring at that same wall, too mentally and physically tired to read magazines or play a game. I slept just to pass time. Sometimes I watched t.v. but most of the time the sound and action was too much for me to process so I kept it off. I feel shitty even complaining about that when people all over the world have hospital stays of months on end. But, it's how I felt, and I thought all the time of others who suffer the gambit of symptoms and I think I would have thrown myself out the window. I'm not that strong.

I rec'd 9 out of the maximum of 14 doses possible in the week. They monitor you constantly to decide how much IL-2 you can take. Apparently I took more doses than anyone else that week so yay for me. I hope that means it'll work better, but then I also hope it works for everyone.

The real shittiness started at home. We left Buffalo Saturday morning and I have like 3 memories between then an Monday. Apparently the same male homecare nurse came to change my dressings (2 tumours on my arm and shoulder have raise thru the skin and are "draining"--yes, the site is horror flick worthy and it makes me feel disgusting times ten) on Sat, Sun & Mon, but I had no recollection of the first two visits so it was like meeting a new person on Monday. Monday was a bad day cuz that's when I started to get more lucid and aware of things, yet I was hallucinating a bit, but aware at the same time so I thought I was going crazy. That has been the worst part. When you think you may be crazy for the rest of your life, there are no words to describe the terror. One of my thoughts was that myself, Derek, my mom, my doctors were all characters in a board game and the IL-2 was one of the punishments. I so desperately wanted the game to end but there was no end. Yet, I was aware this made no sense and I must be hallucinating. Stuff like that was happening, along with a remarkable loss of speech, right hand strength (frustrating not being able to hold a glass with left or right hand!). It's Thursday now and I'm mainly just tired all the time, nauseous or constipated, headachy or dizzy, can't get comfy in bed cuz of my fat ass lymphedema arm and hand that can't be controlled anymore because of tumours blocking passage.... whaaa, whaaa, whaaa. Just general malaise and the depression is slipping in more too. It helps so much to hear your cheers and experiences though.

Nope, not all brave and stoic at all. I'm scared shitless to go back for round 2 on Monday. I was hoping to have a reprieve at home, but instead the symptoms started after I left. How many times have I cried, "I can't go back!"? Too many to count. But I will. Because so many others have and if they can do it, I can. And I can't refuse my best shot of a cure or at least a remission. How could I walk away from that? But I so fucking want to. I am scared out of my wits. I need to get back into focusing on the good and on the present. But my books that hep so much are hard to read when I'm so tired and spinny. Derek offered to read to me, but the poor kid's life revolves around taking care of me now. He does EVERYTHING around the house, helps bathe me, dress me, sometimes helps in the bathroom, feeds me, has become my secretary and makes sure I take my pills. If I don't sleep (like last night), then neither does he, 'cept he has to work the next day. I hate depending on him so much. He's only 32, life is not suppose to be this way. But, it just plain is.

On a superfantastical surreal note, unbeknownst to me, my coworkers held a fundraiser for us so we didn't have to worry about the unpaid time Derek would take off work to come to Buffalo. They raised something like $7000! Oh, my god did I cry. My friend who organized told me stories like of this one little girl of a coworker who when told of our situation told her mom she wanted to give all the money in her savings account to "that guy who has to take his sick wife to Buffalo". Her mom pointed out that was all her savings from birthdays and for education so maybe checking out the piggy bank would be more appropriate. She poured all the changed on the bed and when asked how much she wanted to give she said, "Well, I'm six so I think I wanna give six dollars!". All that for us!!!! It is so bizarre to be the reason for a fundraiser, but the stories like that just make me want to fight more! There are too may people who care and I sooooooooo don't want to be a tragic story. Please God, give me strength.

love to everyone! I'll update again after next treatment when I feel up to it.

Just Call Me the One-Handed Wonder

Tisk, tisk. With my memory I should be blogging more regularly. But, ya do what you can do, yo.
Is it actually March first? I don't like how time flies. Especially when I'm somewhat sidelined and unable to do as much as I'd like to do with my time. I hate saying it, but the last 2 months haven't consisted of much more than dragging myself out of bed between 10am-1pm, then plopping myself on the couch for the rest of the day to watch TV, read, make phone calls (usually related to medical or supportive care, meaning social work or group, that kinda thing). Up until the last 2 or 3 weeks, I was able to drive so I could take myself to this or that appointment but I've lost that independence now. For real excitement, I'd have over only a couple visitors a week (too much socializing drains me), watch DVD's on weekend nights with friends. All because of PAIN!

I don't know where exactly I got the idea that most cancer pain was manageable. Like so many other impressions I had about cancer until I was thrown into this life, I just recently realized that my impression, while not untrue, was a bit simplistic, or a bit black and white. My cancer pain can be managed, but not with a decent quality of life while I still feel like I can and should have a relatively normal lifestyle... going out for dinners, shopping for fun OR necessity (I wish I could go grocery shopping!) , having some drinky poos with friends. I feel mentally and physically ready for this, minus the pain.

Here's the stab at the heart: In order for my pain to be completely under control, I'd be a zombie!

I kept returning to the cancer centre saying, "This isn't working". So they'd up the doses as far as they could without nasty side effects occurring. It wasn't until a couple weeks ago that I go the nerve to ask what their goal was for me pain wise. In my head, I totally thought we were working to get me to the point I described above. But just in case, I didn't ask. Their answer broke my heart (how many times can a heart get broken?). They said they wanted to get me into a "comfortable resting state", which I took to mean comfy on the couch. And the truth was, I was pretty much comfortable on the couch in certain strategic positions. But I wasn't ready for that. That's not my life, not now. Beleive it or not, I still think of myself as a healthy person! Call me sick, and I think, "But I don't have a cold."

So, along came the CADD pump this week which is a rectangular box, about 9x2 inches and weighs like 2lbs. Part of the contraption holds my medication (Dilaudid) which flows through a tiny plastic tube, through a small needle, and into my subq tissue, luckily not a vein cuz that would hurt more since the needle and meds are replaced weekly. The initial dosing did nada but SHABAMMM! the second dose helps a lot!

I'm not nearly pain free, but I can handle it better and I'm grateful for the amount of "life" I've been given back. It's hard to explain but for 2 months everyday I wondered how many more days I could take. So, the day by day mentally is what got me by as well as trying to focus on what I did have and could do rather than what I didn't or couldn't. Must admit that it crossed my mind a few times how many bottles of different narcotics were sitting at my bedside. Had it been another person, a person without so much support, a person who knows not how and when to seek professional help, a person in a deep depression, those pills could easily have done a person in, not the cancer. I guess no one tracks this stuff? .....................................................

What the hell, I typed left hand only for 3 hrs. about this that and the other thing. I erased it!!!!! I can't repeat it, I don't want to. Well, now you know I can't use my right hand at all anymore, not only with the bionic arm! That's frustrating for sooooo many reasons, one being that blogging is a bitch now. But, much better than handwriting so I won't wallow in that long.

The only thing I have to say is that where my entry left off, it seemed like I was pain free. Nope, not at all. The way I went on to decribe it was like this: Instead of having 1 position be comfy on the couch, there are now several. I can do a few errands in a row if someone drives and holds doors and bags, but that gets me into a high level of pain which subsides after a while when I rest. So it's all about balacing need or desire with how much pain I'm willing to take. But if I pushed it past a few errands I'd likely end up in emerge again. So, my enthusiasm is all relative, but to me, right now, it makes a huuuuge difference in my quality of life.

Too bad so much got erased because I can only squeeze in one more entry before I start IL-2 in Buffalo on Monday. But we're leaving Sunday since I have to be at the hospital at the crack of dawn. I want to write about my feelings going into this treatment, many of which I've switched off for a while just so I can keep it together and get the most out of my days in waiting.

Blogging one handed is going to be a challenge going forward. Everything's a challenge these days. But I can handle 'em. One after the other, they keep rollin' in and the person I see in the mirror is not the one I knew 2.5 years ago, except for on the surface, and I'm certainly not talking physical surface. I'm different now. I just am.