Crazy day . . . and another one tomorrow . . .

26 Aug

Well, today was pretty crazy. I woke up and realized that I can not proceed with my current surgeon . . . not without pursuing another opinion. There is something wrong here and I have to trust my gut in that regard. Have never regretted trusting my gut . . . have only regretted not listening to that voice in my head . . . or in this case . . . the pain and discomfort of the most recent expansions and the visual . . . the skin does not look good right now . . .

I don’t know if this is “normal” for what I have been through, but, I am not keen on my surgeon’s recent handling of things . . . and who wants to hear this: “Oh, I have seen worse, a lot worse” and “I will do my very best, but, I can’t guarantee the results” . . . this all coming from a surgeon who promised the moon . . . or rather, I guess, two moons on my front portion. I never wanted her to turn me into a barbie doll or whatever she claimed she could “do for me” (she has, from day one, tried to sell me on going bigger, “upgrading” . . . as if having implants, after a mastectomy could ever be viewed as an upgrade).

Don’t get me wrong, I am not mourning decisions . . . that I opted for a bi-lateral mastectomy, that I chose to go ahead with radiation . . . I did these things so that I would have the optimal chance for being here, where I am today . . . and hopefully to be around for many years. The point was never to get an “upgrade”.

That being said, I believed my surgeon when she told me that I could go up a size . . . which to me meant that if I could go up a size, then surely, I could stay the same size as before . . .

Well, things have changed . . . apparently. And, this isn’t all about “size matters” . . . it is about being told things and having these things constantly modified, changed, or even forgotten (I swear I have had her tell me that she never said certain things that I KNOW she said to me) over time. I know I am one of many patients. I get that. I know that it is my job to be a good patient . . . to be involved, to follow directions, to ask questions . . . and right now, my job is to question, question what is going on and where to go from here.

My skin was damaged from the last expansion. Skin can die . . . something that is called necrosis. If this happens, you lose that skin and it creates, understandably, “issues” with reconstruction.

Ever since Monday’s expansion it has been full time, task mode. My Mom has been incredibly helpful in navigating my insurance, talking with my case manager etc. to get some help, intervention.

So Thursday, I will be seeing a top reconstructive surgeon for a second opinion. I also have an appointment in the afternoon with my existing surgeon . . . not sure how she is going to react to my getting a second opinion, but, I don’t care about that. It is funny, no doctor would ever proceed without second opinions and yet they expect their patients to proceed all of the time, just with their say so. Nope, not happening.

I am hoping that he is going to tell me things are fine and that my surgeon is doing a good job, etc., etc., etc..

But, I need to get this second opinion and I need to be prepared for the possibility that he will not have good things to say. My current surgeon wants to see me tomorrow to decide if I might need to go to surgery this weekend (early). She will base this decision upon how my skin looks.

I went to a department store today (bear with me, this is related). I don’t really have any clothes that fit so well these days . . . my body has changed, I am more trim in places and well, the upper portion is obviously different . . . so many of the clothes that I do have in my closet (that will likely be wearable again some day) are just not appropriate today. I try on clothes that I used to love to wear and I look in the mirror and see a distorted, disfigured version of myself.

I have plans with a friend on Friday and I would like to just have something to wear other than the same one pair of jeans that still fits (everything is too big for the most part). So, I went to Kohls . . . it is the closest store to me and I can’t drive more than about a mile right now due to the complications in my right side. Plus I had a 10 dollar off coupon . . .  woo-hoo!

I found some things to try on. Undressed in the dressing room and nearly passed out . . . really . . . when I saw my reflection. My right side looks like I have been beaten up . . . and badly. Red, blue, purple, black . . . I’m thinking this is not good.

I don’t know if it is going to be a fixable situation or not. Dr. Z was looking at it pretty closely on Monday and saying . . . well, this skin is going anyway since we will create a nipple here, but, the skin below, hmm, I don’t know. I will do my best . . .

Crap. “I will do my best” . . .

Of course she will do her best, but, this is 180 degrees from even just a couple of months ago.

Anyway, back to the dressing room. I was shocked . . . either my skin has become dramatically worse, or this is the first time I have seen it in bright lighting. I felt my body about to go to the ground. I sat down and sobbed. I know that the women in the room next to mine probably heard me. I didn’t care . . .

After I sat for a bit, I gathered up the courage to look a little more closely . . . it didn’t look any better or any less scary. Of course, I am not a doctor, I don’t know what this means, I just know that it does not look good. And, it hurts.

All I could think was thank God, thank God that I already had a second opinion scheduled for tomorrow.

I do not think that my surgeon is experienced enough in working with radiated skin. She IS an excellent surgeon. But, radiated skin is different and can only tolerate so much stretching. The skin looks pretty bad and I am so afraid that I am going to lose it, lose the ability to even have reconstruction.

Please, please, please say some prayers for me on this.

Because I am petite (not a lot of extra weight), if I lose skin from my chest, then there isn’t anywhere else on my body that can spare some skin to use in this area (women often get a tummy tuck and have skin, fat and muscle from their stomach used to create a breast). But, in my case that is not an option. So, I am pretty much limited to the skin that I have on my chest now and that skin is not looking well.

So, a 10 am appointment (for which until just a few hours ago, I did not have a ride . . . Thank you to the Shahon family, yet again . . . their generosity and kindness is seemingly endless) and another appointment at 3:00 pm in Irvine (another friend of mine will take me to that appointment). I am dragging friends all over the county tomorrow.

So, what will I do if my second opinion doc says things don’t look good? I have no idea. But, my Mom was able to find out about another option I can have with my insurance . . . Cedars Sinai . . . for reconstructive surgery.

So, it appears that I have some options here. And, were it not for my Mom, I would not have even known. And, here she is . . . doing all of this for me when she is grieving the loss of her friend Bill. I miss him too. But, I don’t live two doors from his house. My Mom saw him everyday, my Dad would see him often as well. He was such a good friend to them and to me. And, my parents were such good friends to Bill.

I know they are hurting, missing him . . . my Mom walks their little dog Toby past Bills house everyday . . . he pulls to go to see Bill, but, Bill is not there anymore. Oh my heart goes out to my folks having to miss their friend. I miss him too.

This posting had to be about the most ridiculous of rambles . . . probably does not make any sense at all. But, I have been up most nights for several days now. I have only slept a few hours since Monday’s expansion. Too much physical discomfort. And now, well, I am just in a lot of pain, especially the last couple of hours. I am so grateful that I have a morning appointment with the second opinion doc. I don’t think I could bear to wait much longer.

Well, if you are still reading, thank you. Leave me a comment . . . if you feel like it. I always appreciate comments.

Thank you for reading . . . that is, if you got this far 🙂

Please continue to keep me in your prayers, I really need it.

Much love and peace,

Lisa

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