Looking forward . . .

26 Aug

So the past week has been a rough one . . . the loss of a friend, complications with my reconstruction and trying to figure out what to do about it, dealing with seeing the very shockingly different appearance of my skin after a procedure gone bad, second opinions, dealing with insurance, navigating all kinds of waters this week. Lots of emotions and fears. The things I thought would all be gone once I had clear scans, once I heard the word cured.

It is a funny state to be in . . . new beginnings, new people in my life and wonderful things ahead . . . but, still just trapped within this distorted body, trapped by the surgeries to come . . . yes, now I am told that there will not be just one more surgery . . . but, at least one more after this next surgery . . . NO. That is my answer, NO.

That is one of, but, not the only reason, I sought out today’s second opinion (which is actually my fourth reconstruction consult, so really, it is my fourth opinion). But, you get the point.

So how did today go? The surgeon I consulted with today told me that I am a ticking time bomb, that my radiated skin was over expanded (my prior surgeon went too far) and that I need to go to surgery as soon as possible. The ticking time bomb part is that the skin can break because it is so thin and is not “viable” as he put it and so we need to go to surgery as soon as we can. But, that is not so easy. There’s a lot more to this story, but, I am, quite frankly too exhausted to get into it.

I have an appointment on Monday morning with a very experienced and highly regarded reconstructive surgeon at Cedars Sinai. But, he will not make a decision about taking me on as a patient until he sees my skin. Meanwhile, I have to wait until Monday to even have an answer (and the surgeon I saw today said, that ideally I would be in surgery within a day or two tops). But, he conceded that this was not likely going to happen. So, I would have to wait.

So, I am waiting. There is a possibility, if the surgeon I am seeing on Monday decides to take me as his patient, that I could have surgery on Tuesday. Earlier this week, I was told surgery could be tomorrow (Friday). Now that is off. And, so in the meantime I just need to take it easy and avoid doing anything that could cause either impact with my right side or pressure in that area. Driving is to be limited as much as possible and limiting moving around in general will likely decrease my chances of a rupture to the skin. I was given instruction for what to do in the event that the expander breaks through my skin . . . was told to purchase gauze and tape to cover the area until I can see a surgeon. If this does happen, then (I am told) that I can get by for about two days before having to have surgery.

It is kind of crazy making really . . . if you let it be. But, I just can’t get worked up about it too much. I have to get through all kinds of hoops to just get a new surgeon (or, perhaps, return to the surgeon I have had this past year. I don’t want to burn that bridge in case I run out of options). So, it is all a bit sketchy.

I have a birthday party tomorrow night to attend. I want to go, but, I am not sure that I can do it. I have another medical appointment tomorrow afternoon and will ask about it then. I would at least like to stop by her party for at least a little bit. But, I don’t know if I will be able to. It is my friend’s 40th birthday party. She has been such an amazing friend to me. She has helped me so much this past year plus.

I really, really want to go to her party and wish her a happy birthday in person. So, we shall see.

I am also supposed to see a friend of mine for lunch tomorrow prior to my doctor’s appointment. We are meeting about a block from my appointment and I need to eat and there isn’t likely any risk that I will bump into anyone, so I think I can still pull off lunch. But, I will see how I feel in the morning.

Well, I am just a rambler these days . . . the sleepless nights really make it hard to stay on track with anything. I hope to get some sleep tonight. But, sleeping right now makes me a bit nervous. I am afraid I will roll over on my side and in doing so cause the expander to come through my skin. That would not be good. So, I have been intentionally (since Monday’s expansion-gone-bad) stayed up all night every night. I would sleep for a half hour or so, but, really . . . that has been it.

It is to the point where I fall asleep sitting in a chair. So, perhaps tonight, I may just need to sleep and take my chances.

Please keep me in your prayers. I greatly appreciate it.

Love and peace,


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