(17-03-29) Reconstructive Surgery 2.0

I’m not sure if my absence from this site has been noticed.  I’ve been in my head a lot, regarding whether to go through with this reconstructive surgery.  I think there are two reasons why i’ve been ruminating so much.  First, this is a decision that i am truly making all alone.  I know all the decisions are essentially mine to make … but i did let myself get swayed a lot with some of the previous issues (agreeing to chemo, allowing them to remove the expanders and implants, fighting the man at work), so i was able to diffuse the responsibility.  If something went wrong with any of those experiences, i could lay some of the blame on someone outside myself.  But this decision – the decision as to whether to go through several painful surgeries just to look “normal” with clothes on – is mine and mine alone to make.  If i end up being dissatisfied with my decision later, the only person i have to blame is myself.  That scares me … which leads me to the second reason for such ongoing rumination: the self-awareness.  I don’t like what i see in myself when i think about this decision i’ve made.  I should be stronger.  I shouldn’t care about looking “normal.”  I should see this battle wound as sexy evidence of just how strong my body can be.  I should be proud of my body, not ashamed.  I should want to rip my shirt off and shout, “Look at this!  Can you believe i survived that shit?!” and then have crazy, confident, completely naked with some womyn who is just as impressed by my war wounds as i am.  But i’d be lying if i told you that i see or think any of these things.

Okay.  Logistics.

Pre-op consult with Dr. Matatov to prep for surgery on Thursday, April 6.

Surgery on Friday, April 7.  It is scheduled to start at 7:30am.  They never start on time.  Dr. Matatov blocked out 10 hours in the operating room.  This is important because you may not hear any updates until 8:00pm or later (Phoenix time).  Don’t stress.  The surgery is SUPPOSED to take between 6-10 hours.

I am required to remain inpatient for a minimum of 48 hours, due to high risk of blood clotting in the first 24 hours after the surgery.  This means at the very earliest, i would leave the hospital on Sunday, but it’s more likely going to be Monday.

Just like with all my other surgeries, i am choosing not to discuss which hospital i’m having my procedure at, and i will be signing a form denying any and all visitors (for the smarty-pants people [ahem, Michelle]  who like the challenge of figuring out on their own where i am at).  Please don’t take it personally.

My mom is flying in on Monday, April 10 and staying 9 or 10 days.  If you’re one of my loved ones who tends to worry each time about whether i’ll have enough support: rest assured.  My mom’s got this one.  🙂

I am going to designate one person to be authorized to get updates from my doctor via phone; that way, there is at least someone who knows that my surgery went successfully and all that.  If you want to be added to the list of people (s)he updates, please write a reply at the end of this blog entry.

I’m not gonna lie.  I’m nervous about this – way more nervous than i was with the mastectomy.  I think it’s because i’ve had the TIME to worry.  I’m trying to keep that in check this next week.

(17-02-22) Elite Plastic Surgery

Oh, the irony of it all.

To throw a fit about taking Tamoxifen when it clearly causes weight gain … to spend hours at the gym every day doing cardio … to score myself every night on how well i managed my calories and fat grams … to fight so hard for five weeks just to lose six pounds of weight and 2% of body fat …

… to do all that and then hear the doctor tell me THIS: “It would help if you put on some weight” …

Well, at least i can laugh at the irony.

Thanks to some digging by a nurse practitioner at the Virginia G Piper Cancer Center, I learned that there might actually be a doctor in AZ who can perform the types of specialized flap surgeries i would need for my reconstruction.  I had my consultation today with Dr. Tim Matatov at Elite Plastic Surgery, in northeast Phoenix.  This consult was a world of difference compared to my consultation at the Mayo Clinic.  I brought the photo album i made documenting my breast cancer journey, and he carefully looked at all 30 pages, asking detailed questions about my cancer, surgeries, radiation damage, oxygen therapy, doctors, implants, oncology treatment plan, and hopes for reconstruction.  He reviewed some doctors’ progress notes i brought with me.  When i stripped down to have him check the fat deposits throughout my body, he literally took out a measuring tape and measured areas along my abdomen, inner thighs, and butt.  (BTW, terrible day to decide not to wear underwear!)  He explained all my options and told me which ones he thought were the safest.  He was brutally honest with me about how many surgeries i would probably need (3-4), what my real recovery time would be in between each one (6-8 weeks the first time, 4-6 weeks subsequently), not being able to promise a particular cup size up front (I *might* get to a full B in time but not at first), and how the purpose of the first surgery was NOT to give me the breasts i always wanted (but rather to get a mound of healthy living tissue attached safely to my chest area).  He explained how he deals with insurance companies to ensure that he gets paid, and he said he never comes after the patients for money in the events that insurance providers underpay.  He said he does cosmetic surgery procedures because it pays the bills and reconstructions because it is his passion.  He spoke of doing his training in New Orleans (the mecca of breast reconstructive surgery, for the record), working under Bob Allen (the breast microsurgeon who INVENTED the DIEP flap surgery), participating in 180 breast reconstructive procedures during his residency, and completing 17 flap surgeries in the six months that he has been working in Phoenix).  He said there are only 3 surgeons in AZ who do flap surgeries; the other 2 work at the Mayo Clinic (Dr. Casey being one of them).  He showed me pictures of his former patients, very graphic photos of the abdomen being cut open and stretched out during surgery (that part was too much!), and images of CT scans showing the blood vessels throughout the body.  He listened to me, examined me, and consulted with me for almost two hours.  I was blown away by the level of detail and the degree of honesty he shared during this consult.

If i do end up deciding to go through with reconstruction, i think i’ve found just the right doctor.

Surgery #1 would take place in late March.

(17-02-07) Mayo Clinic

New day, new clinic, new doctor.  I’ve gotten used to this by now.  I can concisely sum up 15 months of trauma and treatment, whip off my clothing and show my private areas to groups of complete strangers in a room, and report devastating experiences without so much as a crack in my voice or a tear in my eye.  I can ask questions unapologetically and relentlessly, size up whether i like a doctor within a few minutes, and make it clear that i know in the end all these decisions are MINE – not theirs – to make.

Today was no exception.

 

me, 10 minutes into the consultation: Does the IGAP flap surgery take fat from the lower butt itself, or the thigh area just below the butt?

Dr. Casey: the lower butt itself … but honestly, i wouldn’t recommend that surgery for you.

me: Why not?  That’s the area where i have the most fatty tissue to work with.

Dr. Casey: There are a number of issues with doing that.  First, there’s your positioning in the operating room to consider.  We can’t suck fat out from your back side, then flip you over to perform surgery on your chest.  This means we’d essentially have to have you propped up on your side the whole time, which is tricky.  Then, there’s the fact that the tissue in your butt is far more fibrous than in your chest; it’s like trying to make a mold out of something that’s as solid as a rock.  There is also often a problem trying to match up the size of the blood vessels between those two regions, and since we have to connect the blood vessels, we need the sizes to be relatively similar.  Also, because we’d be cutting into the area where your sciatic nerve is located, you may find yourself dealing with chronic pain in the long run.

me: So, then, what type of reconstruction are you suggesting?

Dr. Casey: I think a lateral thigh perforator (LTP) flap surgery would be best.  It takes tissue from your outer thigh area.  The blood vessels are more similar in size to the ones by your chest, and it goes in between the muscles instead of cutting into the muscles.

me: I haven’t even heard of this option.  Do you have any before and after photos that you can show me?

Dr. Casey: No.

me: (blink, blink) Um, okay.  Do you not take photos before and after these procedures?

Dr. Casey: Yeah, we do, but there is patient confidentiality to consider.

me: I understand that.  So no one has given you permission to let other prospective patients see what this procedure looks like?

Dr. Casey: No.

me: Okay… Is there any one who’s had this procedure whom i could talk to, to get more insight?

Dr. Casey: No.  Again, patient confidentiality.

me: How many of these procedures have you done?

Dr. Casey: Three.

me: Three?!  How many of the IGAP surgeries have you done specifically for breast reconstruction?

Dr. Casey: One … and again, that’s not what i would recommend doing.

(My head is REELING.  This guy has only performed this procedure THREE TIMES, and he has NO PHOTOGRAPHIC EVIDENCE of his work?  Is he fucking KIDDING ME right now?!)

me: How long has this procedure been around?

Dr. Casey: It’s been around for about three years.  If you want to research it, look up Stefani Tuinder.  She works in the Netherlands and has some done some pioneering work in this field.

(Pioneering is not a comforting word when we’re talking about reconstructive surgery.  When i hear “pioneers,” i think of old-fashioned ladies wearing bonnets and living without electricity.  Poor word choice, Mr. I’ve-Done-This-Highly-Technical-Microsurgery-Three-Whole-Times.)

me: What is the risk of the flap failing and collapsing?

Dr. Casey: There is a 2-3% failure rate with LTP flaps.  There’s also a risk of blood clots forming from the blood vessels not working properly, which is why you’re in an intensive care recovery unit for a few days after the procedure.

me: Are there two surgeons available to do both breasts at the same time?

Dr. Casey: I wouldn’t recommend that.

me: But some surgeons are willing to do that.  Is that an option here?

Dr. Casey: No.

me: So you’re the only surgeon here who does this kind of surgery?

Dr. Casey: No, there are others, but we all have our own individual practices, and it would be difficult to try to coordinate schedules.

(What that tells me, doctor, is that you’re not willing to put in a little extra work to accommodate my needs … or you just want all the surgery profits for yourself.  Regardless, i’m seriously less than impressed with you at this point.)

me: If i go through with this, i want to be able to have both breasts worked on at the same time.  The recovery time in between surgeries is long, and i’m really going to need to get back to work at some point.  I would like to avoid delaying that as much as possible.

Dr. Casey: If that’s something you insist on, i would recommend Dr. Bob Allen.  He works out of South Carolina and New York.

(Is that supposed to be helpful?)

me: If we *did* do separate surgeries, it appears that i would need three surgeries: one for the right breast, one for the left, and one for evening them out after they’ve settled.  What does the timeline look like, including recovery times and waiting periods?

Dr. Casey: Well, after the 1st surgery, you’d need to wait 3-4 months, then wait another 3-4 months after the left side.

me: And the recovery time is 8 weeks.

Dr. Casey: More like 6.

(More like 8….)

me: So i would be out of work for 6-8 weeks, be able to go back to work for 1-2 months, be out of work again for another 6-8 weeks, and then have to leave work 1-2 months after that for the third surgery, which would take another 4-6 weeks recovery?  So, we’re talking 24-38 weeks … 6-10 months total just for reconstruction?

Dr. Casey: That sounds about right.

(sounds about ri… Seriously, i kind of want to punch you in the face right now.)

* * *

In the end, he did convince me to return the following morning for a CAT scan.  The CAT scan is going to analyze all the blood vessels in my stomach, side thigh, and butt to see which ones would be appropriate for transfer.  I don’t even see the point of this; if there isn’t enough fat in certain areas, what does it matter what the blood vessels look like??  But i’m going … because honestly, the more involved i get with this process, the more ANNOYED i get, so these steps are just taking me closer and closer to saying a firm “NO” to reconstruction.

(17-01-17) Reconstruction

I met with my reconstructive surgeon yesterday to discuss “next steps.”

To reconstruct or not to reconstruct?  That is the question that has been keeping me up these past several nights.

I have a consultation at the Mayo Clinic on February 7, to see if my body is eligible for IGAP Flap Reconstruction*.  I have three weeks to choose between more doctors, more hospitals, more pain, more recovery time, and more risks; or living out the rest of my life feeling lopsided and less attractive and constantly on display as the one-breasted cancer survivor.

The “strong” choice seems to be NOT getting reconstruction.  I just don’t know if i have it in me to live happily with that choice.