Thursday, March 15, 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.

20 Comments:

At 1:35 PM, Blogger Chellezilla said...

Sarah, thanks for the update. I've been thinking of you lately. I'm sorry to hear you have to go back to Buffalo again so soon, but like you said, it's a shot at a cure or remission that you just have to take.

I think it's so wonderful that your coworkers held a fundraiser for you and Derek. So amazing.

Take care, and best of luck with round two. I'll be keeping you in my thoughts for sure.

 
At 1:36 PM, Blogger Carver said...

Dear Sarah,

I have been checking back here, hoping you'd feel up to posting between IL2 rounds and it was great to see your post. I am so sorry about the hallucinations. I know that has to be the absolute worse, especially since if was after the treatment. You said you aren't brave but I think you are the epitome of brave. Doing what you greatly fear is the bravest thing there is in my book. I am rooting for you all the way and I hope you will soon be joining some of the other IL 2 warriors who post those magic words, NED! Take care and my very best wishes, Carver

 
At 1:49 PM, Anonymous Anonymous said...

Good to see you here Sarah! I was worried about you. It sounds like some of what you are talking about are side effects of the treatment. My husband had mood swings and couldn't focus on anything even for days afterward. Memory loss was an issue too.

Congratulations on completing round one (9 doses! wow). You don't know me, but I'm pulling for you.

-Katrina

 
At 6:51 PM, Blogger Christie said...

Thank you for the update, Sara. Even though you may not think that you're strong, I think you're one of the most amazing people I've ever "met". Wishing you all the best for Round 2 in Buffalo.

Love and prayers.

charlotte

 
At 7:10 PM, Blogger Ms.Smarties said...

I've been checking your blog hoping to see an update. You've got awesome co-workers! I keep my fingers crossed for you. Good luck.

 
At 7:23 PM, Anonymous Anonymous said...

Sarah-
You are AMAZING! You're like a big ole'Gibraltar and don't even know it! You inspire so many people. I believe perhaps Heather was right, you are kindred spirits. She was just as amazing as you. I think you never really know how strong you are until you face something like this. It's really OK to bitch and cry and be pissed. You own it, you live it, you do with it what you want. Do not ever, ever compare yourself to anyone else. Frankly, if this were me in your shoes, I wouldn't have made it half the distance you've gone. It's really OK to moan and hate it. Hating is good...its gets your ass in gear to fight like hell.

NYC, NY

 
At 9:27 PM, Blogger mrbunsrocks said...

Thanks so much for the update. You HAVE the strength. You have the willpower.....it comes through your words, even when they're disheartened.

I wish you even more strength than you already have and you're in my thoughts.

 
At 10:36 PM, Anonymous stsammy said...

Sarah, so glad to see an update. I always check back to see your progress, and am always so blown away by what a fighter you are.

So glad to see your coworkers can recognize your strength and rally around you like that. Keep feeding off that positive energy.

 
At 11:10 PM, Anonymous Pennylane said...

Sarah, even the days that you don't feel brave, your strength shines through. I'll be thinking of you and wishing you luck with round 2.

p.s. What about listening to books? (Audible.com has a great selection of digital books & mags).

 
At 11:46 PM, Blogger Shannon said...

Sarah, so good to see you post an update! Sounds like that IL-2 is one helluva rough assed treatement, but I hope like hell it blasts melanoma out for good!
I'm with Carver on this one...as far as I see it, you are one tough, brave and inspiring woman.
Wishing you only the best of luck, and praying hard that you are NED before you know it!

Take care~
Shannon

 
At 7:16 AM, Blogger Miss Melanoma said...

Sarah,
Like so many others, I check on you every day. When I don't hear from you, I send all my positive vibes your way.
I know that this is so hard for you, and it's amazing how you push yourself through what we are all so scared of. You are the bomb.

I love you and I encourage you to embrace every emotion you have through this- every last one of them! Take it and own it, girlie. You've earned the right to every one of the.

-Lori

 
At 10:31 AM, Anonymous Anonymous said...

Sarah, you ARE SO WORTH IT! Don't be surprised that people want to empty their piggy banks and that people from the other side of the world religiously check your blog every day to see how you are.

Sarah, IL-2 has worked for people such as Jane form Maine, www.myspace.com/operationsunshield , why not you?

My heart hurts, boy am I thinking of you.

With love from Oz

Kristyx

 
At 12:12 PM, Anonymous Anonymous said...

Hi Sarah,
I've been checking for news on you. Thanks for the update. Glad to hear it went better than you had anticipated. Let's hope the same for round 2. Mike and I think of you often and send all our love your way.
Stay strong.
xoR&M

 
At 1:18 PM, Anonymous Toronto Girl said...

Sarah,
I've also been checking your blog routinely,alike so many many others, and I am also appreciative that you posted. Thank you.
It has been so crazy for you, I wish I could take some of what you're going through away.I wish I could be closer to where you are, or just do somthing to change what you are going through.
I so really want this disease to leave you. I will be thinking of you, and praying that the next round will make a big difference. We all care so much about you. I do. Weird, as we've never 'met'.
JanetteT from the Netherlands

 
At 4:58 PM, Anonymous Anonymous said...

Dear Sarah,

Like so many others, I check your blog regularly. I was so happy to see a new post from you because your strength is an inspiration to me. Thank you for the courage to share your story...It helps me know I am not alone in this fight.

In my experience, the second round of IL-2 was easier because I knew what to expect. I had the same symptoms/ side effects as I did the first time round, they just came on a little quicker.

I also had the same thought, "I can't go back and do round 2 so soon!!!" However, you WILL feel stronger and less tired each day up until Monday. Believe in the treatment. Believe in yourself.

Believe in Belief.

Best,
-Christina

 
At 6:58 PM, Anonymous Careyanne said...

Sarah,

I once asked a friend how she was feeling and she answered 'strong'. I knew she wasn't well, but was so amazed to think of her answer. I know you may not think to answer that way if someone was to ask you, but I know we all see your strength.

We'll be thinking of you Monday.

Careyanne
("Carolina Girl")

 
At 12:20 AM, Blogger carms said...

Sarah,

Thanks for your update. It is incredibly brave to go ahead with your treatment even though you are terrified. Having a good rant about it all will hopefully help you pull through.

It's fantastic to know that your coworkers are looking out for you and Derek.

Know that there are people all over the world who are thinking of you and wishing you well.

 
At 3:33 PM, Blogger medstudentitis said...

Sarah,
I'm sorry to hear that you're feeling so crappy these days. You sound like you're in better spirits than I thought anyone could ever be in your situation. You're an inspiration. I hope the next treatment goes well.

 
At 11:36 AM, Anonymous Anonymous said...

You should be getting back from round 2 soon. I've been thinking of you this past week. I hope you're doing ok. You really are "one tough cookie".

-Katrina

 
At 11:13 AM, Blogger tom said...

i was writing a song, and 3 words kept coming into my head 'que sarah sarah', so i did a search on google and found this site. Strange coincidence of this for me was sarah birth date is the same as mine.
I was very moved by what i read. In response, I would be happy to send the melody (now completed), to whoever may want to add words to it (i would help on that score also if required), in dedication to the memory of this beautiful person. Maybe Derek, or someone he knows would like to put words to it, if not me.
All the best

tom kelly, somewhere, limerick, ireland

Tom

 

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