Pre-Op Plans

It’s been over a month since I’ve written.  Mostly, I’ve been incredibly busy with work.  But I’ve also been feeling crappy in general and not really in the mood to write about it.  In consultation with my psychiatrist, I decided to stop taking one of my anti-depressants (Wellbutrin), as I try to eliminate as many pills from my daily life as possible.  I can’t say it’s been a resounding success.  I feel down in general, hungry all the time, I’ve gained weight, I was sick with bronchitis and sinusitis for almost four weeks, Thanksgiving was stressful, my RA has become worse lately with pain in my knees that is unbearable at times, etc.  So it hasn’t been the best month.  I saw my PCP on Monday for a pre-op physical – she says I should go back on the Wellbutrin.  I agree with this, but will wait to make a decision until I see my psychiatrist on Monday.

Today I went to see Dr Gimbel to talk about what he’ll do in my breast revision surgery scheduled for December 20 (two weeks from Friday).  One development is that I’ve decided that I don’t want him to construct nipples.  I’m happy without them, and I’m worried that it could do more harm than good to have him construct them – sometimes one or both become necrotic, they fall off, they look strange, they protrude perpetually.   I’ve read a lot of complaints about nipple reconstruction, so I think I’ll just skip it.  I had hoped that he’d be able to put some fat into the front of my breasts to at least round them out – right now there is a flat spot where the nipple should be, and I feel like I can see that even in some of my clothes.  He says that he can’t really round them out, but that he will do his best to lift and tighten both breasts so that they’re generally rounder and perkier.

I also want him to do something about my stomach ledge.  It is incredibly uncomfortable because my pants are continually rolling down and then getting wedged in the large area where the abdominal incision was.  I spend all day picking up my pants.  Belts don’t help, smaller pants don’t fit right over my ass and thighs.  So something needs to be done to smooth out my gut a bit.  He says he can do his best with this, but that there will always be a “shelf” as long as I carry extra weight in my stomach.

He does not anticipate that I should need any drains, although he says it’s a small possibility depending on what he finds in there.  He also says I shouldn’t have any restrictions on lifting (which means I can pick up my kiddo when need be!).

I’m worried about this surgery though.  This is the third surgery I’ll have this year.  The last two have gone very well.  Am I pushing things by going in for yet another surgery and expecting that everything will be fine just like with the previous ones?  And still, I worry that any sort of revision could make things worse – maybe I should just be happy with what he’s done so far.  He insists that this is an easy surgery, only takes two hours, out of the hospital that day.  Still, there was lots of talk about re-opening incisions that are so nicely healed!  Am I tempting fate here for vanity?

Letters to Doctors

What follows is a guest blog by Teri Smieja, the original BRCA blogger extraordinaire.  I just ordered a copy of her book, and I can’t wait to read it.  Congrats to Teri on the success of this important book:

 

My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition.

Letters to Doctors went ‘live’ on amazon.com on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Two weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

• You are too young to worry about this.
• You are too old to worry about this.
• You can’t get this mutation from your father’s side of the family.
• Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

• Family history of ovarian cancer (ovarian cancer is always a red flag).
• Family history of male breast cancer.
• Family history of breast, ovarian, colon, pancreatic, melanoma, and other BRCA related cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.

It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it. We just need your help in getting the word out there about Letters to Doctors, and our mission.

“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planed for you? Not much.”
― Jim Rohn

No Go

Really, sex after hysterectomy?  Not as easy as it sounds.  (does it sound easy?)

It was not comfortable, and although it might have been had I given it more than a two minute chance, I got anxious.  Basically, I chickened out.

Do you care about my sex life?  Probably not.  But I just googled “intercourse after hysterectomy” and nowhere did I find a normal person reporting from her bed less than a hour after her husband went back downstairs to resume watching ESPN.  (yes, of course he was understanding, but eventually I did suggest he just go back to his previous activities).

Another thing I noticed is that if you do research on sex after hysterectomy, everyone is writing about sex drive.  That was not the problem.  I wanted to do it.  But it was physically uncomfortable – I felt pressure inside and some kind of scraping.  And I was nervous about something going in there when nothing has been in there for three months!  And what was in there three months ago was a whole lot of knives and tools that made a whole lot of cuts and caused all sorts of other damage.

So I’m thinking this is a bit mental and a bit physical.  Regardless, it is probably going to take a bit of time to ease back into it.  I did post a query to hystersisters to see how others have managed this, and I plan to email my PCP, Dr. Stern, as well (although Dr Sukumvanich performed the surgery, I don’t suspect he will have anything all that useful to contribute since, as he admitted, as long as there’s no cancer, that’s all he cares about).

Sex Tonight? (graphic pic – nonsexual!)

My husband is going to want to have sex tonight.  Why?  Because today marks three months from my hysterectomy/BSO and the doctor says we can now.  To tell you the truth, I thought I’d be really anxious about this moment, but I’m not.  I’m looking forward to it!  And this is odd.  I take a lot of anti-depressive medication, so my sex drive is erratic (and by erratic, I mean nil 95% of the time).  I’ve been working with my shrink to fix this by changing medication, but a secondary problem is that sex has been painful for me since I had our baby more than two years ago.  No gynecologist has been able to determine a reason for this, but I’m hoping that now that everything has been “reconstructed” down there, that maybe the pain will be gone as well.  Of course, that reconstruction could bring along its own discomfort, but I’m trying to think positively here.

I’m also curious to see what sorts of changes might come about from the changes in my hormones While many women report the loss of sexual enjoyment, some women report that their enjoyment is better than ever.  I’m hoping to be in that latter group!

An update on the patches I’ve been trying.  Last time I wrote, I mentioned that Dr Balk suggested I change to a once-weekly patch, and that might help with my headaches.  The once-weekly was a generic Climara patch and it did not go so well.  While my headaches did go away, they were replaced by the horrible skin effects of the patch.  It was so itchy, burning, uncomfortable, and it came off a few times in the shower.  Here’s the result:

Rash from generic Climara Patch

This is the result of two different placements of the patch.  You can see the top part is mostly healed – rough dried out skin.  The bottom part is actually bleeding.  The black marks are from the sticky stuff.  And, the other marks are various scars from the hysterectomy.  Yep, as I’ve said before, my belly is a mess.  So I decided to go back to the Vivelle Dot.  I’ve been back on it now for two weeks and the headaches seem to be gone.  It’s really likely that those were environmental and just had to do with the weather changing.  I think I’ll stick with the Vivelle for now.

Speaking of mess, I have scheduled my third, and hopefully last, surgery for December 20.  Dr Gimbel will fix any of the mess left over from the original breast reconstruction – some indentations, some extra skin, construct nipples, and hopefully he’ll be able to do a little fixing of my oddly shaped and uncomfortable belly.

 

Guest Blog at Chicago Tribune

Here is a link to my guest piece at Teppi Jacobsen’s blog on the Chicago Tribune website, where I express tons of self-pity for being a 36 year old woman with a 65 year old body:

!http://www.chicagonow.com/when-you-put-it-that-way/2013/10/bryna-brca-2-positive-a-lifetime-of-tough-decisions-at-only-36-years-old-123/