Sunday, August 26, 2012

My real feelings about what just happened to me

It all happened so fast... before I knew it, the doctor was showing me the piece he had just cut off of my body. I was stunned at the size of it. Even more stunned to see what was left over, after it was all stitched back together, when I got home.

Robert told me that he had understood, from our talk with the doctor right before the surgery, that a lot was going to come off. For some reason, that message didn't get through to me. Robert suggested that we take just the nodule, superficially at first, biopsy it, then if necessary, come back and do more. (This was before we knew that the nodule was under the skin, not only superficial). The doctor said this was an option, but he recommended to take it all off, with wide incisional margins, going at least a centimeter deeper than the "thing" itself. "Just to be on the safe side", and "why make her go through this twice"? I went with the doctor's opinion; Robert confided later that he saw some of the passivity I have around doctors, when I agreed to it.

I feel awful and confused.

I had thought that the doctor, knowing my history (indeed *seeing* it very clearly), would have some sympathy and cut as little as possible to get this black spot off. On the other hand, Robert suggested that maybe, to the doctor, this *was* sympathy, so that I wouldn't have to possibly come do it again, or that it wouldn't grow back again... whatever *IT* is. Interesting look at it, you know?

I told the doctor that the other side is pretty numb from the NF, so if he could spare as much nerve damage as possible, I'd appreciate it. It was the "live", healthy side.
Did he even register that I said that?
Only time will tell what the nerve damage has happened from this procedure.

As I said before, it just all happened so fast.

When I went to my own doctor the day after the urgent care visit, he said that it needs to come off, the sooner the better. He also gave me some names to go to a semi-private hospital, if I chose that route.
The next day I went to Soroka. My doctor said to me that if they don't have a space in day surgery within the week, I should go to the other hospital.

To make a very long story short, after being ping-ponged from one place to another in Soroka, and being told to wait 10 minutes, then another 5, then another 5 by a secretary who I thought I was supposed to go to, I just BAILED and left. I walked out of Soroka after being there for almost two hours without getting anyone to help me get this appointment. My fax was in someone's office, and nobody seemed to know who that was. So, I left.

The woman who kept telling me to wait for her another 5 minutes actually called to me down the corridor as I left- trying to get me back. I signaled to her (not being the type to call down a hallway) that I am going out. Then I turned and left.

I was already decided to go to the private hospital the next day to schedule it.
That morning, however, I got a call at 8:30am from the mystery woman who had my fax, at Soroka. She wanted to know why I didn't come to her office yesterday. ~~...ya...~~
She then offered me a slot the very next morning if I want to take it. Saying to me that if I don't take it, the wait will be months long, that on the letter from my doctor was written "urgent", I took the time slot. She right then faxed me the surgical requirements for blood work, and I went straight to the health clinic to get the tests taken care of.

Next thing I knew I was in the operating room telling the nurse to please move the huge round light which was shining in my eye. The local anesthesia stung something fierce. That same nurse came to hold my hand... I had asked her if she could do that for me. "Hypersensitivity" said the doctor as he loaded up more anesthesia into the syringe.

Now we have the two-to-three week waiting period for the biopsy to come back. That is one of the drawbacks of socialized medicine... takes much longer for these things. The doctor said that he had no idea what it was, never saw anything quite like it, if it is melanoma it is atypical, we'll just have to wait and see.

Oh, and he also said that if it is melanoma, I'll have to come back to have lymph nodes taken out and biopsied. Ummm, yeah? I told him that the left side's lymph nodes were pretty much cleared out when I had NF, and maybe it isn't so great to go taking out the right side's unless we know for sure they need to come out. "Hmmm", was all he could muster up to that one.

Meanwhile, all the time I was walking around Soroka the previous day (getting ping-ponged around) my RIGHT leg hurt exactly like my left used to. It's getting much worse, it's one of the reasons I bailed- I was in so much pain. RIGHT side pain. I'm gonna have to have that fixed, some time after Ya'akov's BarMitzvah in March, if it will wait that long.

So now I get to the part about:
WHY ME?!?!
What is there MORE that I am supposed to learn from all this?
("nothing". "It's all for Nothing" is the answer I hear from myself these days) 
My body is so mutilated, 
now MORE.
W H Y?!?!?!?!?!?!?

When I was talking to the admitting nurse, she asked me if I have any allergies to medicines. While she asked me this, she was reaching for the white bracelets. When I said yes, and proceeded with the list of antibiotics I can no longer take, she opened her drawer to get the red bracelets.
Then she asked me if I am in general good health. Again, her pen was poised at the box at the top of her page marked "in good health".
I said "yes and no". I said I am not sick per-se, but I am injured by many things that have happened to me. (hat tip to you, MZ ) As she moved her pen away from the healthy box and started writing down what I was telling her, she was stunned. The picture I was painting for her did not compute with the young, normal looking woman in front of her.

Then came the exam. First by this nurse, then, when she was unsure of what she was looking at, the next exam was by the doctor who was to do my surgery. Then he asked me if it is OK if he would ask another doctor if he can show my wounds to him as well.
(turned out to be a little reunion with me & that second doctor- he took care of me when I had cellulitis in 2008. He remembered me as soon as he saw gapey. Never forgets a face......)

My point, which I have strayed from, is that the nurse was automatically going to the white hospital bracelet, and automatically ready to tick off the "healthy" square on the intake form. Because that is Most People.

My body is battered and bruised. I wasn't born this way. I look at pre-NF photos of myself and feel a sad feeling of "oh, wow, my body was normal then. I had no pain, no scars at all".  My c-section scar, from giving birth to Azriel in 2005, was the first thing that made me feel scarred. Little did I know what I was in for, just a year and a half later.

So, why me? Why did I have to have a little black nodule, which was bleeding, get taken off so aggressively?

Why do I have to be chewed up and spit out once or twice a year? 
Isn't having survived NF ENOUGH for You? 
then came:
The horrible post-traumatic stress syndrome,
the cellulitis,
the PVNS in left thigh joint,
(which was another extremely rare disease, within one year of the NF.
In fact, it is so rare, that there is little or no research on it.)
the appendicitis,
the kidney problems,
mesh surgery for gapey: took almost a year to recover from,
and needed a new nerve pain medicine because of it.
The impingement surgery, again on the left thigh joint,
the nerve problems,
the pain problems,
the monstrously strong medicines,
now THIS; more skin cut away from my body.
next: impingement surgery for the right thigh joint.
I don't even want to venture a guess as to how that recovery will go. 
The left thigh is not that reliable to lean on.

Why does there ALWAYS seem to be something holding me back from doing the reconstruction surgery? Now I have to heal from this surgery, then get the right thigh joint fixed from it's impingement. That will take time to heal before I can do reconstruction.

It is hard to explain why it matters to me to not have these horrendous scars. Many people out there (and on here) say to me "just be glad that you are alive! You almost weren't. You made it out, and you should count your blessings."
While that is not false, it doesn't let me feel my feelings. I feel victimized (face getting hot here, starting to cry).

When I had the cesarean, and was sad about it (very sad), people often told me that I am not focusing on what is the most important thing- that I have my healthy baby, and nothing else is as important as that. OK, true. My point is that I can feel sad and mourn for the birth I didn't get- it doesn't mean I am not grateful that I have a healthy baby. (later I would say that I know that the c-section was something that helped me be a better doula, and a more compassionate person. Always looking for a reason.)

It is similar here; I am grateful that NF didn't kill me, or maim me worse than it did. Of *course* I am grateful. But if I have a chance to fix the damage, what is wrong with wanting to go for that? Also there is the hope that it would also help some of my pain problems. Now, actually, with this new chunk that got taken out, near the NF site, I could have that filled in, as well.

Anyway, that is not on the table any time soon. And yes, I am sad about that. Just when I was ready.

I tell you, this chunk that was taken out on Thursday, it is hurting so badly, emotionally as well as physically (many stitches, and there is a hole now where scar tissue must grow. That takes *time*.) It's almost as if it hurts my soul all over again like gapey did. I feel so victimized and abused, even though it was the logical and safest thing to do getting the nodule off. I don't understand how or why, but I am really broken up about this. Actually, it does feel similar to when I had the cesarean.

Why, God WHY???? Why so-- many-- problems!?!?!?
Why mutilate my body?


  1. I can totally understand why you felt horrible about the c-section years ago and I can understand that it would be horrible to go through this all again now. I'm so sorry that you are feeling so low and having to add more pain and procedures to your list. { { { H U G } } }.

  2. I am so sorry that you are feeling so low right now. You are so strong, and I am personally so inspired by your ability to keep chugging on! hold tight


  3. You are having a very rough time of it. I don't know what I can do to make things easier for you - wonder why I think I should be able to do so. Sending positive thoughts and energy.

  4. Feel what you need to feel! As you said, being in pain doesn't mean you're not grateful for what you have. It's great that your honest about your feelings, and feeling them means you're human. It sucks what you went through and what you are going through, and our thoughts are with you.

  5. It is an astonishment that you have had to endure so much pain, stress, and fear, arriving in a series of ordeals, and it is astonishing how you have perservered.

    You are asking fundamental questions. Perhaps they will lead you to fundamental answers. That could change everything, and change all of us.


  6. Oh, Sarah,

    My heart is aching for you. Will it help to tell you that in my eyes you are just as whole a person as anybody else. Maybe more so because you've put yourself back together on so many levels. There is a strength in you that continues to flow outwards and affect us all.

    Love, Miriam

    1. thanks, dear friend. I really appreciate it.
      I think I am just sick of being the one who has to put myself together all the time. Everyone reaches their limit, you know?
      But, what I do know for sure is that I could never keep putting myself back together without my good friends and family. Life would be meaningless without everyone. So, yes... thank Gd.

  7. Don't know that I have anything useful to say, but thinking of you and wishing you a hahlama mehira, put at note for you in the Kotel last week, don't know if you are into those things but figured it couldn't hurt... Wishing you a shavua yoter tov!



  8. I'm thinking of you too, and have no answers either, only the highest hope that all will heal well, and soon. Lots of love to you, dear Sarah.

  9. So sorry this had to happen to you after all you've been through. I hope you can summon some remaining reserves to help you get over it. Tamar