This past appointment with the surgeons they were supposed to remove the rest of the dying tissue, but they said it was "too hard" and they wanted to soften it some to make it easier to cut out. They gave me this cream called Santyl (Collagenase), which they said would soften the dead skin/tissue...and I have to say it works very, very well, maybe too well, too fast. My skin seems like it is melting, dressing changes are gross as the skin and tissue are coming off and out with the packing. Its hurting pretty bad. I was happy I was able to stop using the Dankins solution which is what I was soaking the packing in before and it burned horribly, but this stuff is just as bad, actually worse. The pain has intensified and every moment is tougher. Every dressing change mom and I say, "One down, only a million more to go" its said jokingly with a underlying sadness that this is life for God only knows how long. I said this morning to my mom as she came in for the dressing change "I hate this routine, it sucks, and I hate this life" All she could do is reply with a "I know". Not much else that can be said. This all sucks, and we literally have no clue how many months of this are ahead. I'm drained and tired from all the pain meds that I have to take, I try and cut back, but I always end up having to take the full doses. I'm emotionally at a breaking point. I just want to be able to do simple things without help, I need help with every single thing it seems, and I just want some independence back.
I have to seriously thank my mom, she is the one who takes care of me, who does all the simple things I want to do, but can't. I want to thank her for everything she does and I want to apologize that I brought this on her. I know its not my fault, I know I didn't ask for this to happen, but it did, and I'm sorry that its landed in her lap. She is amazing and I'm so lucky to have her. This has not been easy on her as she has had to become a nurse to me (A very good nurse, she even got props from my surgeons on how well she is doing). She never thought she'd be taking cream and using her fingers to rub down my open flesh. I see it in her face as she does it, how much it makes her sick, but more so how much it hurts her to see me hurt. I guess that is a mothers love, and there is nothing like it.
To end with I have to say, I know that I'm complaining all the time, and I'm miserable sounding, but that is my life right now, however, I am truly aware at how much worse things could be. Not for me, but just in life generally. I see the kids faces at the hospital when they roll or walk by who have cancer, and I see the face of the parents with that child. What could be worse?! I know how much worse life could be. Its easy for people to say that to you when you're facing something like this..."You know it could be worse." Yes, well, I also know it could be better. If that is selfish of me, then so be it. It could be better.
This is the most recent picture of the one wound. Monday the will cut the section at the bottom right, about 3 more inches round.
*If you read my blog then you know that I can't spell, my grammar sucks, I use run on sentences and there is nothing correct about my writing. I simply put my thoughts down. I'd also like to blame my pain meds. Thank you.
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