Meltdowns, disappointment, and confusion

I barely made it through Christmas.  Yes, it was a pleasant distraction for weeks, but as we neared Christmas Day, I was really struggling.  I've had several tantrum-style meltdowns. I finally asked Dave for the name of the psychologist who specializes in breast cancer.  I needed an appointment.  Turns out, by the time I asked, Dave had already called and was expecting a return call that afternoon.  I'm scheduled to see her on Monday.  I'm ready to be diagnosed as clinically crazy.

I had my pre-op appointment with Dr. Vega's plastic surgery office this morning.  Dr. Vega was on vacation, so I saw the other micro-surgeon, Dr. Harvey.  He started off with, "So, we have a little bit of a problem." ---the words you do NOT want to hear when you've known you've had breast cancer for 3 months and surgery is 13 days away.  The office got me confused with someone else and my surgery cannot proceed on January 12th because Dr. Vega/Dr. Harvey are leaving town on the 13th.  After this type of surgery, I have to be under their watch for 3 days to make sure the reconstruction takes.  Dr. Harvey got to deliver this message to us while Dave tried to not lose his temper and I tried not to cry.  We'll just say that neither of those things were able to be avoided.  It was horrible.  And on top of all that, Dr. Harvey offered a "delayed reconstruction" as a viable option.  That was exactly the surgery that Dr. Vega said he does NOT recommend.  We left very confused.  I am close to the end of my rope on all of this.

Waiting another stress-filled week is just about killing me.  I had this all scheduled with work, my sick days, my subs, child-care, my nuclear injection, my brain........everything was all set. And now it's not.  In fact, it's so "NOT" that Dr. Vega called us twice today from his vacation and confused me all over again with what he recommends.  Remember all those conversations a month ago with Dr. Vega recommending immediate reconstruction.  He gets on the phone and says he would never recommend that for someone getting radiation.  Dave spent a lot of time on the phone with him, thankfully, because I am done with these conversations and decisions.  I just want the cancer OUT.

My new Apple Watch recognized my stress today and after that appointment, it recommended that I take a moment and do a breathing app. Haha. But for real!

Soooooo........Dave helped put this new surgery date in perspective for me. He says that surgery on January 12th wasn't always a sure-thing because I could have just as easily gotten into a car accident and had to have it rescheduled.  Ummmm.  Yes, that makes me feel much better.

And my friend, Kristen, had the best idea of all:  Before my surgery, take a sharpie and write on my left breast "THIS ONE" so there are no more mistakes.  I might actually do this.

Surgery is now scheduled for noon on January 19th.

CTA scan and stuff

Drove into Rochester during a major blizzard to have my CTA scan.  Got an IV placed and had an awful contrast injected.  They told me that I would be able to taste it, that is would make me feel a warm rush throughout my body, and  that it would make me feel like I'm peeing my pants.  Yep, yep, and yep.  It also can cause deadly allergic reactions, so I had to stay for a bit afterwards, next to a bunch of life-saving equipment.  This scan will let the plastic surgeon know if I have enough good blood vessels in my abdomen to do a reconstruction without having to cut out part of my stomach muscle for a blood supply.  Fingers crossed on that one.  I assume I will know the results at my pre-op appointment with him on December 30th.

In the meantime, I recieved a letter from my insurance company that my plastic surgeon (Dr. Vega) will no longer be a participating provider.  After February 28th, we do not know if insurance will cover his services.  That means I will have my reconstruction covered, but by the time I need to have any adjustments so my breasts match, and have a nipple reconstructed, I may be on my own.  I will have to have this awkward conversation with Dr. Vega, "Sooo, how much does a nipple cost out-of-pocket?"  Great.

It's Christmas - I don't have any more appointments until afterwards.  Thankfully, I'm staying insanely busy so I don't have time to dwell on the fact that my feeling-great days are numbered.  I've put those thoughts on the back burner as much as my brain will let me.

Surgery scheduled

So, it had been eight days since I called and asked for surgery to be scheduled through Dr. Vega's office.  They were going to call me back with a date.  I waited.  And waited.  Nothing.  Finally, I got a phone call from Dr. Vega's yesterday.  They wanted to schedule my pre-op appointment.  Um, I don't even know when my surgery is.  Oh, it's January 12th.  Yeah, thanks for letting me know.  Rrrrr!

So, that is set.  December 15th, I go for my CTA scan of the blood vessels in my abdomen, to make sure they are good for breast reconstruction.  December 30th is my pre-op with Dr. Vega.  I'm assuming I will have a pre-op appointment with Dr. Hetland too?

I'm happy I will be able to get through the holidays and have a week or so back at school prior to being out.

Moving forward

Dave and I had a conference call with the plastic surgeon from Cleveland Clinic this morning.  Since the Rochester plastic surgeon has a completely different idea on the reconstruction surgeries, Dave set up a chance for us to have one more go-around of questions.  It really comes down to the fact that Cleveland Clinic really believes their way is best and Dr. Vega really believes that his way is best.  Both can support their claims. When we got off the phone, we talked....Dave paced.....and we decided to go forward Dr. Vega and hope like hell that I don't need radiation.  The need for radiation can only be determined a week after lymph node biopsies that are collected during the actual surgery.

Dave always tells me "hope is not a strategy", but it is going to be MY strategy this time.

He also tries to adjust my OCD personality with his favorite formula:  Happiness equals Reality minus Expectations.  He is always trying to lower my expectations.  My head knows he is right.  My heart does not.

So, I made a phone call to the surgical scheduler.  They have to try to find a date that works for Dr. Vega and Dr. Hetland....and find an operating room that is free for 8-10 hours.  I figure it will take them a couple of days to figure this out.  At this point, I do hope it is after Christmas.

In the meantime, I am so happy to be planning and moving forward again.  Back to just being nervous about my long recovery......and freaked out by the fact that I have breast cancer and getting a mastectomy.

So frustrated!

If I was the crying type, I would be sobbing.  It's been almost a month since my diagnosis and I still do not have a surgery date.  This is becoming hard to bear.  I have mentally prepped myself for this over and over and....nothing.  It is emotionally exhausting me.

Dave flew out this morning.  I went back to Pittsford to meet with Dr. Vega this afternoon.  He recommends getting the mastectomy and DIEP flap reconstruction all in one surgery.  He believes that this is the best course of action, even when given the information from Cleveland Clinic.  He will gladly do it the way Cleveland recommends, but he gave several points on why it is the wrong course of action.  But......because he knows that Dave has been questioning it, he is gently pushing me to do it in two surgeries.  The only problem is that he would not reconstruct my breast for at LEAST 6 months to a year after the mastectomy.  He will not do another surgery until the first one is healed.  I can't have this drag on for a whole year.  I can't live with only one breast for over a half a year - even if I have an uncomfortable expander inserted - which I don't even know if he does.  And even if I decide to have both surgeries at once, he cannot get me scheduled until January.  For now, they took me off the surgery schedule.....so I am in a holding pattern.

BTW - I loved Dr. Vega.  I think he and Dr. Hetland would make a great surgeon team. I trust them both.

Dave will try to call him tomorrow to ask his questions.  In the meantime, he is still checking with Cleveland Clinic to see if a) they accept our insurance, b) they have any surgery dates available, and c) if they would do the 2 surgeries closer together if I don't need radiation.

B & (effing) I and last plastic surgeon consult

So, I never wrote this gem in my blog, but B&I required a very specifically worded fax for me to get my actual tissue slides to Cleveland Clinic.  I did that and followed it up with a phone call to the managers of both B&I and ACM.  All of this after my favorite nurse at my gyno office worked very hard to make all the phone calls to them prior to putting it all back in my hands.  ........and we got to Cleveland and B&I and their sweet side-kick, ACM, never got those slides to them.  They LIED to me!

Fast forward to prepping for today's consult with Dr. Vega's office.  I called B&I and asked for JUST MY REPORTS (not even CDs with images, just the written reports) to be sent to Dr. Vega.  Usually they have no problem sending this directly to the doctors, they just do not want them released to me.  On the phone, B&I told me the exact same thing that they always say "Oh, yes, you'll have to call ACM to get your reports".  I lost it.  I'm not even embarrassed to say it.  I started YELLING and RANTING on the phone to B&I telling them that I was NOT going to call ACM because we've already played this game several times and they will not release them to me and that someone better figure it out so that I have my reports at Dr. Vega's by November 15th. She promised she would look into it.

......and.......you guessed it.  Nothing was sent to Dr. Vega's from B&I.  I. GIVE. UP.

Dave scheduled a flight home from California last night so he could be with me at today's consult.  He got stuck in Chicago overnight with just the clothes on his back.  Then his flight got delayed and he arrived 45 minutes late to our appointment today.  Dr. Vega's staff were very accommodating and delayed starting my consult until he arrived. But, turns out that the first consult with Dr. Vega is NOT with Dr. Vega.  That was very off-putting.  Especially for Dave who had just scrambled through hell and high water to get there.

At Cleveland we talked with the plastic surgeon who recommended the best practice of doing the mastectomy with expander in one surgery.  Then, see if you need radiation and go through that, if needed.  Then, a second surgery would be for reconstructing the breast.  This is best practice because radiation can destroy the breast reconstruction.  I won't know if I need radiation until the tumor size and lymph node involvement is known. Pathology from surgery takes about a week.  They 100% recommend this procedure for best results.  It is called "Delayed-Immediate Reconstruction".  If no radiation is needed, the reconstruction can be done a week later.

Turns out the people at Dr. Vega's office do not do things that way.  It would tie up a surgery date that could end up getting cancelled - if radiation is needed.  Dave really spent a good amount of time trying to hash this out with the girl who did our consult.  Super frustrating and I cannot handle these discussions anymore.  Beyond stressful.  I am quickly getting to the point where I don't care anymore and just want this over.  Dave still has fight left in him.

Sooooooo.......Now I have to schedule ANOTHER DAMN appointment with Dr. Vega for tomorrow. Another sick day!  This time so I can see the doctor, who I THOUGHT we were seeing today.  This office is near Eastview Mall and takes almost 50 minutes to get there.  And Dave is flying out again tomorrow, so he is going to be "there" by phone.  If Dr. Vega cannot commit to the "delayed-immediate" procedure, we have had some beginning talks about doing my surgeries in Cleveland....which brings upon us a million more hurdles.

So tired.  Just want this over with.

A Trump win and last surgeon consult

We met with Dr. Kristin Skinner this morning.  That was our fifth and final surgeon consult.  We liked her.  She had a social worker meet with us, much like the psychiatrist appointment at Cleveland Clinic.  They are trying to make sure that we are handling this stress in a healthy way. They ask what we are telling the kids and how we are going to take care of the kids after surgery.

Out of the 5 doctors - we have narrowed it down to Dr. Ruth Hetland and Dr. Skinner.  We are leaning toward Dr. Hetland.

I had my blood pressure taken at this appointment and it was 140/77.
Nurse:  Are you a little stressed today?
Me:  Yes, I am terrified for our country this morning.

We have one more consult with a plastic surgeon - Dr. Stephen Vega.  That will be next Tuesday. At that point, if his ideas follow closely with what we heard at Cleveland Clinic, we are ready to schedule this surgery.  I am looking forward to finalizing things and scheduling the surgery.  I know I need to hit bottom in order to start climbing out of this hole.  And I am ready.