The Huffington Post blurb/link to my Lifetime interview…

April 20, 2010

Read it/watch it by clicking here

Oh, and btw, just found out that I am a candidate for the surgery I have been hoping to have (see last post)…you know, the “ass transplant” surgery…


The saga continues

April 18, 2010

I hate the word “saga”, almost as much as I hate the word “journey”, but not nearly as much as I hate the word “battle” when used in the context of being treated for cancer. Unfortunately, another writer got to this topic before me (see: Dana Jennings), so I will have to be satisfied with merely registering my discontent with the current state of the language of illness, while hanging my head in shame as I refer to my situation as a “saga”. Bleh.

Not that it’s cancer we’re talking about. I need to make that clear because it has occurred to me lately that there may be people out there who believe that what is going on with me is a continuation of the cancer “saga/battle/whatever”. In fact, it is an unfortunate byproduct of what happens when you DO survive cancer.

For better or for worse, life AFTER cancer is not a well-mined topic. When I googled and, yes, “bing”-ed some combination of “radiation” and “breast” and “chronic wound”, exactly nothing of any relevance whatsoever came up. Add “cancer” to the search terms, and the result is even more useless. The closest I have ever gotten to finding ANYONE with my problem (that problem being a wound that won’t heal on a body party -specifically, my breast – as a result of damage due to radiation for cancer), is a post on a breast cancer bulletin board regarding someone whose radiation caused severe burns.

Yeah, I had some burns back then too, and by “back then”, I mean eight years ago. A lot has happened since then, not the least of which is me basically living my life (good thing!!) and then, of course, the continued breakdown of my skin.

According to my plastic surgeon, there are women who have presented in his office with their implants literally falling out of their chest due to skin necrosis as a result of radiation damage, and women who have experienced the breakdown of their skin all the way through to their backs. But I have yet to come across any of them in my search for like minds and a “community” for what I am experiencing.

For that reason, among others, I have felt somewhat adrift over the past several months. There’s no one who can tell me what the trajectory of this unhealed wound might be. Even all of the plastic surgeons in the practice group I’ve been using can’t seem to agree.  So, yeah…adrift.  Adrift is how I’ve been feeling.  Unable to answer my own questions about a game plan, unable to answer the questions of my friends and family.  And kind of anxious about not being able to answer the quesions of friends and family.  Like, as if I need something else to worry about, now I’m worrying about not being able to reassure other people about how I’m doing.  I’m not alone in this.  Ask just about anyone who has ever been sick or cared for someone who is sick.  You feel like you have an obligation to reassure everyone else.  And you feel like if you can’t do so, them you’ve failed not only them, but yourself.  Your failure to reassure others translates in your mind to THEIR worst fears becoming YOUR reality.  Magical thinking turned on its head.  Its ugly head.

On that note…

Two Fridays ago, I had my last of 40 Hyperbaric treatments. While early on, say, during the first 30 such treatments, I was singing the praises of Hyperbaric: how it made my nails strong, my metabolism fast, my hair lush and shiny, my skin 10 years younger. But towards the end, I was miserable. Every time I lay down in that tube, I was filled with anxiety, anger and annoyance with the whole thing, which doesn’t seem to have done anything to heal my wound at all. Instead of feeling energetic at the end of a 110 minute treatment, I felt spacey. And starving. I would race to the Au Bon Pain in the hospital lobby and scarf something – anything. Sometimes it would be chocolate covered almonds, sometimes a spinach and cheese croissant. It never felt “right” for me to be eating like that, and I felt awful about it but powerless to do anything about it. Of course, we’re only talking 10 days here.

On the final day of Hyperbaric, I was particularly exhausted and anxious.  Several days before that when I had begun to feel some of the symptoms of C Diff coming back, I brought this to the attention of the Hyperbaric Doctor, and instead of offering medical advice, like “go back to taking Flagyl”, he suggested that perhaps I might want to see a gastroenterologist for a colonoscopy to rule out something more serious.

Oh, yeah, that was helpful.  I, who have had three colonoscopies in the past ten years and have proven without a doubt that my colon is pristine and clean and nothing to worry about, am not about to go off and listen to such drivel.  I had C Diff, for chrissakes, which has a significant recurrance rate.  And I have all of the syptoms of C Diff.  Could it be…C Diff??!!!!  Perhaps?  Maybe?  Could we think horses when we hear hoofbeats maybe?

This interaction did not endear me to Hyperbaric Doctor, who had already begun to make his appearance at the top of my shit list for the simpe reason that he charges $590 for every single time I visit the Hyperbaric room, whether or not I see him at all.  With 40 visits, it adds up.  Feel free to do the horrifying math (hint: it equals nearly 20 THOUSAND DOLLARS!) And yes, theoretically insurance covers it, after you’ve met your deductible, after you’ve fought with them that there should be no co-insurance since this is a covered benefit.

We interrupt this blog to ask the question: How do uninsured people afford to have their wounds healed?  And now back to our reguarly scheduled rant.

So Hyperbaric Doctor was already starting to really piss me off when on my last day, at the final moments of my last of 40 treatments, I was asked to wait another 15 minutes for him to grace me with his presence to give me some sort of exit interview type thing.  As I waited, instead of rejoicing about being done with Hyperbaric, I was haunted by scenes from Nip/Tuck, episodes of which I had been watching during my last weeks of treatment.  Only as I sat there in my examination gown and compared my ruined sillouette to that of Kimber Henry and Michelle Landau and even the less sexy Joely Richardson, and desperately, in panic mode, began to enumerate all of the things which I would do to perfect myself in spite of my imperfection, did it occur to me the ridiculous irony of my having foisted Nip/Tuck upon myself in my current state.  A show about people obsessed with perfection.  And me, watching it.  Not getting the irony.

OH!  The irony!!  (Take note, Alanis Morisette – this is what irony IS.)

Hyperbaric Doctor finally graced me with his presence and promptly dashed all of my hopes to itty bitty pieces and then stomped all over them as they lay on the floor.  “Your wound has healed some, but not as much as we would have liked it to, and I don’t see how it is going to close on its own, or really at all.  You really need to see a plastic surgeon as soon as possible.”  He said. 

“You mean that I am going to die with this wound on me?”  I said.

“I don’t know.  That is up to your plastic surgeon to decide.  I cannot make you promises that I cannot make.”   He said.

Tears started to leak out of the corners of my eyes and make their way slowly down my cheeks.  I didn’t want him to see my cry.  I looked up, like I heard works sometimes.  I put the edge of my hand under my nose, like I heard works sometimes.  But the more I tried to not cry, the more I cried.  And he stared at me.  And so did the two techs who worked in the Hyperbaric room.  Me, weeping.  Them, staring.

My head was spinning.  This wasn’t right.  This wasn’t necessary.  I had just finished Hyperbaric.  All I had to have done was walk out and make my appointment with my plastic surgeon.  What was all this negativity about?  What was his purpose in raising questions of which he had no answer?

I calmed myself enough to speak.  “Hyperbaric Doctor, I am sure that you are a very competent doctor, medically speaking.  But I have to give you some constructive criticism that hopefully you can use with your future patients: your bedside manner is an absolute failure.  You did not need to raise questions that you are in no position to answer.  You could have simply said, “We are done with treatment, and now you must see your plastic surgeon in order to see about closing the wound.”  That would have been fine.  That would have been enough. Instead, you’ve raised all of these questions on a Friday, when I have no hope of having any of them answered until next week at the earliest.  I didn’t need to know about all of those questions.  They add nothing for me.  All they do, I suppose is cover yourself, avoid malpractice.  And I think that stinks.”

His response: “After all of the care I have given you, this is the thanks I get?”

I kid you not.

We did eventually speak more about it, and he actually admitted that he was trying to manage my expectations, and that perhaps there was no need to after all, since it was going to be up to the plastic surgeons to do that.  He ended up apologizing to me, and we ended up hugging it out.  And he said he would pray for me.

Is it ever okay to say, “Please DON’T pray for me, as I don’t really have a very functional relationship with God, not that I necessarily believe in God as the character depicted in the Bible, but in any event, I feel that if you try to get this God involved in my case, it will only backfire”? 

Yeah, I didn’t think that would be appropriate.  Kind of a little control-freakish.  If someone wants to pray for me, I suppose that is their preprogative.  And their relationship with God, whatever that is, should govern that prayer.  My relationship with God, whatever God is, and troubled as that relationship is (due to the fact that despite the many blessings I have enjoyed in my life, I get this sense that he/she/it takes great pleasure in pissing all over me on a fairly regular basis) is really mine to be all ambivalent about.  I don’t pray anymore at all these days.  I just feel it would be counterproductive.

All 0f the hugging it out and agreements to be prayed for aside, I left the hospital that day feeling like hell.  I called my friend, E, knowing that her daughter has been hearing about college acceptances, and hoping that she could distract me.  Unfortunately, I got all weepy in that phone call.  Now she probably thinks I am a basket case.  Which I am not.  It is simply that I had a really unfortunate exit interview with a doctor.

That weekend, I had three bar mitzvahs on the social calendar.  I made a conscious decision, one that I have never made before, one that I have never understood other people making.  Until that day.  I decided to stay slightly wine-buzzed all weekend long.  When there was no wine, I would sleep.  When I was done sleeping, there would be more wine.  And it worked!  I had a wonderful weekend, not talking about or thinking about my wound and how and when and if it was ever going to be closed.  I was the belle of the ball – dancing, chatting, flitting from friend to friend, being gracious and charming and always a little wine-buzzed.  Worked like a charm.

Monday morning rolled around, and I had to get ready for my appointment with my plastic surgeon, and I was delightfully NOT tired precisely because my plan had worked: I had spent absolutely ZERO time over the weekend thinking about my problems.  It was a glorious respite.  I felt rested and ready.  And calm. So so calm.  SO calm that when Dr. K told me that my wound would not close on its own, and that I wasn’t even eligible for a skin graft, due to the unhealthy condition of  my radiated skin, I just sat there and took it all in.  Calmly.

There was good news to follow though, and that was that the wound COULD be closed.  And the way it would happen would be with a transplant of tissue from somewhere else on my body – tissue with a blood supply – and that blood supply would supersede the failed skin within the wound bed.  The even better news was that out of this, I could make a brand new breast – one that looks natural and feels natural because it is made of my own flesh and blood.  And while they were at it, they could do both of my breasts.  And if when they were done with it all, the breasts were too small, then I could have implants if I wanted.

This plastic surgeon is not the plastic surgeon who would do the surgery though.  That would be a micro-vascular plastic surgeon specialist.  He gave me her name.  And it was nice to see that she has trained with and worked with the micro-vascular plastic surgeon guy that I was supposed to meet with last summer when I looked into this sort of surgery for simply frivolous reasons – wanting to look better.

I awaited her phone call, and when she did call, she said that she heard that I was quite “small” and that she saw that as a potential issue.  She asked me to take photographs of my own ass and email them to her so that we could get moving as quickly as possible.  When I took the photos, I was quite shocked – I actually like my butt.  It’s quite pert and well-shaped, and not particularly big.  But I would be surprised if she couldn’t get enough flesh out of it to make a couple of 32A’s.  I would be happy with that.  I really would. After all, I was willing to go completely unreconstructed after this whole debacle.  I was ready to be rid of my breasts altogether.  And if out of the ashes, a set of 32A’s could rise, well, hell, that would be kind of nice.

I’m still waiting to hear back from Dr. Micro-Vascular.  And I am suprisingly mellow about it.  I feel certain that there is enough flesh somewhere on my body to close my wound.  Whether I get breasts out of it, well, icing on the cake.  So, I’m mellow.

In the meantime, I contine to battle C Diff, which seems to have recurred.  Right after my meeting with my Plastic Surgeon, I was feeling giddy with happiness.  Right after that, I felt loguey and lethargic and bloated in my belly and gassy like I have never experienced.  It reminded me exactly of what I felt like when I was first developing C Diff.  Remember I had spoken about this with Hyperbaric Doctor, who suggested getting  a colonoscopy?  Didn’t do that, of course.  Instead, I got another prescription for Flagyl, and guess what?  After about two pills, I felt like  a new person.  I feel strong and energetic and unbloated.  The lethargy has left my body.  I can see my abs again. 

I’m still waiting for a more definitive game plan on the C Diff though.  I am expected a call back from my gastroenterologist this week to discuss how we keep it from coming back again.  In the meantime, I’m enjoying feeling good.

I’m practicing the yoga again, and that’s going super well.  I feel more flexible than ever, if not quite as strong.  I am recruiting friends to go on my long walks and hikes with me, to keep me motivated.  And I am now taking ballroom dance classes at a Fred Astaire studio.  Focusing on the Rumba at the moment, which in its basic form is quite easy.  But add spins, add forward and backward walking – it gets complicated and challenging and really really fun.  I friggin LOVE my dance classes.  They have absolutely NO use in real life, since the Husband doesn’t take them, and when I dance with him in public, all I can do is show him the basics, which I learned on the first day.  Like, for Rumba, it’s quick-quick-slowwwww.  He moves forward, I move back, and it’s essentially a box step.  The hips swing where the foot goes.  When the foot lands, the hip lands too.  It’s really easy, like I said – even the Husband can do it on the fly with a little coaching.  It’s the more complicated moves that you really pay for at Fred Astaire, and these are the things that have no use in real life.

But what use does yoga have? 

It feels good, it keeps me sane.  It’s meditative.  The music is divine (I love the latin beat, but you can find a Rumba in a lot of music if you look for it.  Recent discovery: George Michael’s “Freedom”….listen to it and you can easily detect the quick-quick-sloowwwww).

So, this is far from over.  I will try to keep updating.