NO MORE CUTTING!

Had a surgeons appt yesterday and they did the last of the cutting, wooohooo! NO MORE CUTTING. Only now I wish I would start healing faster. I'm healing, just slowly. They now have me using the Dankins solution to soak the packing in, which burns like crazy, and just found out that its actually a bleach solution...DUR...no wonder it burns. I use the Dankins for two days then use the collagenase cream for a day then alternate back to the Dankins. I tried to think which I liked better, which one hurt less, and, well they both hurt like hell, so they are tied. I'm just happy to post the last picture where you will see new area cut. Hopefully from now on, there will be reports of healing and pictures of a smaller area! Please just keep praying for healing, faster healing even, or better yet a miracle!

As big as its going to get, yay!

This photo is just a different angle so you can see how deep the wound is a little better and how much healing needs to happen!

April Update

I can't believe its been a month since my surgery, time went so fast, yet so slow, hard to explain. It has been a very trying month, a roller-coaster that I'd love to get off of. I remember seeing my incisions for the first time and thinking how great they looked, the sutures were in such clean lines, and I was so happy that at least the scarring would look "okay". Slowly but surely things unraveled and now I sit with holes in my stomach and things I used to call "boobs". I'm happy with the fact I can wear clothing and I have a "shape" that appears to be a chest, but looking at them gets more depressing every time. Unfortunately, that is the least of my worries right now, and something I'll obsess over when this is all taken care of, doesn't look like it will be anytime soon.
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.

New Pics

Not for the squeamish. Update

As many of you know I've been suffering with ulcers from my breast surgery on both sides, things just kept getting worse, 2 ER visits, its been a mess. I finally went in for my scheduled appt. and got the dreaded news of dead/dying tissue. They were going to schedule surgery but decided to do it right then. They numbed me up and cut away the tissue they kept my face turned/covered and mom said it would be awhile before she'd let me look at it. It hurts so bad, the bigger side is the right side but they did both sides. Its going to take a while to heal. It is very painful, obviously, but they upped my pain meds to 100mg of morphine every 8 hours and 12mg delaudid every 3 hours and 2mg xanax as needed. Good meds, but never enough. I'm freaking out pretty bad, one bad infection and it could be it for me. I'm very scared with my bad immune system from the HS. Its can go bad very quickly. SO please pray for me. I'm tired and not sleeping like I should just have so much on my mind, but I'm so exhausted this morning I might just drop out of it. I convinced mom to do some pictures this morning during dressing change to share, I still will not look at this on my body but a pic helps seperate it. She only took a couple. Again please just pray or send me good vibes love while I fight and go through this, its incredibly painful and scary. Lots of love.

Ulcers.

Ulcers pics taken a couple days ago, they are bigger already, new photos soon.

Ulcer photos

Right Breast Ulcer
















Left Breast Ulcer














Few other surgery pics, hard to post breast photos, cause I'm trying to crop pics correctly.

Can you hear me SCREAMING?

All I do is complain, I know everyone is so sick of it, dammit I'm sick of it too, but I sick of feeling it even more. This surgery has become a nightmare. I formed two ulcers one under each breast so I've been having to do dressing changes. Well during a dressing change on Thursday night, as soon as we took the bandage of it looked like a horror film it started spewing this yellow liquid and blood mixture everywhere, the moment we put a new THICK bandage one, literally within sec. it was saturated. So we scrambled to get some clothes on me, and bandage it up thick then mom ran to get ready and off to the hospital, by the time we got to the hospital, which at night only took maybe 10 mins, it had soaked threw all the bandages, my shirt, my coat the arm of my coat, it was everywhere. Luckily, since I looked like I just came off the set of a horror flick, or was just shot, they took me back immediately. I'm not going to go through all the crap they did and didn't do at the hospital, but in the end, they took the drainage tubes out to early at last weeks appointment. The fluid didn't have anywhere to go, to it formed some type of pocket, and then it found a opening at the ulcer to have the fluid burst out of. Nice, right. They told me I'd just have to keep bandages on it. Luckily the burst only lasted about 6 more times, now we are down to just a steady leaking, out of BOTH breast ulcers. So I"m having to change bandages on each breast about every hour. Its horrible. On top of that the moisture from this liquid has made the ulcer openings larger. The one on the right is probably almost a 3 inch opening now. All my pain meds where wonderful at first, but now they aren't touching a thing, I had already lowered some, and not going to up them again, which means they are going to have to find something else to help. I don't know what else, but something. I'm in constant horrible pain. I just want to cry all the time, but I honestly have no tears left. Friends all made visits last weekend, so of course I'm alone this weekend and might be for the next 3 months. I hope someone comes back. But I understand I'm not fun. This sucks right now. Maybe I'm just looking for sympathy, but who cares, wouldn't you in my position?. I think I'm just looking for empathy cause right now I just feel so lost, so alone, so sad. I knew this wouldn't be easy, but I never imagined it would be this hard.