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.