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.

Election Day at Cleveland Clinic

Epipany for Will:  So, boobs are breasts?
Epiphany for Dave:  If you found the lumps a week earlier, we could be at the World Series the night before all your appointments!

My genetic testing ("My Risks") came back negative.  That is good news.

We arrived in Cleveland last night.  Got a sweet suite - for real, a nice hotel that delivered chocolates at 10pm - right at the hospital.

Today, we had 6+ appointments with a mammographer/ultrasound, a surgeon, oncologist, chemotherapist, radiologist, psychiatrist, plastic surgeon, and then some more lab/EKG tests.  We arrived at 7:30am and walked out of the hospital at 5:30pm.  Appointments were back to back.  Unfortunately, we did not have breakfast prior to arriving.  At 10:30, Dave smuggled a breakfast sandwich to me in the surgeon's office - and that was the last we ate all day.  I had more hands on my breasts today than I've had in my entire lifespan. I got photographed in a real photography studio, wearing just a little paper half-circle that got taped over my lower parts.  Not exactly how I ever envisioned my nude modeling career to start.  Exhausted does not begin to explain how I was feeling.  We missed a gorgeous 65 degree day and when we left the hospital it was raining like crazy.

We did get some different gems of information that were new.  Nothing Earth-shattering, but things that will help me iron out what I want done.  I do think this is the direction I am headed:  Unilateral mastectomy with reconstruction using the DIEP flap (fat, skin, and blood vessels from my abdomen). That surgery might have to happen in two different sessions because it will not be clear if I need radiation therapy until the surgical biopsies come back a week later.  Doing radiation on a reconstructed breast could ruin the live tissue that is trying to connect.

We also found out that, if I do need radiation, I need to find a place that does "heart sparing radiation" so I do not get heart damage.  This is tricky since my heart is behind my affected breast.

We drove home in the rain, listening to what we thought would be a Hillary win.  I fell asleep for 20 minutes and when I woke up, the world had changed.

Pink bands and work friends

Everyone in the school is wearing a pink band that says "No one FIGHTS alone".  Wow.....just wow.

Work friends are keeping me laughing and I don't know what I would do without them.  They have heard enough about my boobs to last 4 lifetimes.  And they keep listening and caring.

'Nuff said.

PSA for all my women friends

Here's your PSA for the day.  If you are of the age of getting mammograms and they tell you that you have dense breast tissue, get an ultrasound.  By NYS law, when you have dense breast tissue, it is covered.  Dense breast tissue makes it hard to see tumors in mammograms.  Mine were not located by the diagnostic 3-D mammogram, they only saw the tumors on ultrasound.   And they only saw 2 tumors on ultrasound, while MRI showed 4 spots.  If you're dense, don't be dense - just do it!  I'm going to sell that slogan.  (And buy some new boobs). :)

We met with 2 more surgeons this afternoon:  Dr. Chris Caldwell and Dr. Ruth Hetland.  Both were amazing.  Both had the same message for me as Dr. Mederios.  I defintely need a mastectomy.  I can decide I want a bi-lateral mastectomy just for symmetry on the reconstruction.  Having a double doesn't necessarily drop my percent chance of getting breast cancer - mostly because I'd be watched very closely and I'll most likely be on Tamoxiphen.  I loved Dr. Caldwell and Dave loved Dr. Hetland.

Next step - making an appointment for a second opinion on a plastic surgeon.  Thinking Dr. Stephen Vega in Pittsford.

Ummm, my eyes are up here!

I had just been telling Dave how much I liked the woman surgeon we met with because I felt that she understood me better.  Dave said, "Well, a woman might be able to empathsize with  you better, but a guy knows what a good set of t*ts look like".  Thus began our first consult with a plastic surgeon - Dr. Andrew Smith at RGH.

I'm looking at two options for reconstruction.  The first option is that they place an expander behind my chest muscle during my mastectomy (or mastectomies).  Then, for approximately 2 months, I go in every other week and they put a needle into it to fill it slowly with saline.  Once it gets to the desired amount, I would go back in for surgery to replace it with implants.  The other option is to get a tram flap.  This is where they cut a giant section out below your belly button and use it to construct a breast.  You get a little tummy tuck as a bonus.  Nipples could be tattooed on later as they have their own artist on deck - and we got to see the pictures.

The plastic surgeon, Dave, and my naked self had all these discussions.  They were all talking about my breasts as if I wasn't there....it was just them and my boobs.  I actually didn't know where to put my own eyes, so I joined in and looked down at my breasts too.  Then the surgeon looked at my lower abdomen to assess if I'd be a candidate for the tram flap procedure.  Turns out, and I don't know if this is a compliment or not, I don't have "a lot to work with".  So, I could have either  2 B-sized breasts  or 1 D-sized breast.  And he says the tummy tuck wouldn't even make much of a difference on me.  I was like, "Dude, it's Halloween and I plan on eating all my kids' candy once they fall asleep, so give me a chance to grow a saggy tummy that you can work with."  That wouldn't even be a challenge.

Finally....results of MRI and a consult with a surgeon

Finally the results of the MRI - a few highlights:

• Right breast is fine
• Left breast has two other suspicious areas
• Didn't say anything about lymph nodes
• Didn't say anything about what stage

The funny thing is that I got all the information over the phone from my gyn doctor's office.  I was frantically taking notes because Dave was on a work call and I didn't want to forget to tell him anything.  I wrote "4th area, superior to cancerous area, near aereola, might have spread".  He read the notes and frantically started packing us up to get ready to see our first surgeon consult.  (Back to this story in a minute....)

I loved the breast surgeon at Rochester General:  Dr. Medeiros.  Sorry, I butchered that name on my last update.  She is the director of breast surgery and Dave got us in there for an immediate appointment through a work contact. She did a visual and breast exam first - to get a good idea of the kind of surgery we were looking at.  As she was doing this, Dave was asking a million questions....namely, if the cancer had spread to other areas of my body.  At this point she said she had no reason to believe that it did.  She left the room for me to get dressed and Dave let out the BIGGEST SIGH OF RELIEF.  I was like ????????  He said that when he read my notes from the morning, it said the MRI showed that the cancer had spread into my AORTA.   Now go back up and reread the underlined part.  He read "aereola" as "aorta" and thought the cancer had spread to my heart.  He was quite worked up over this.  We've been laughing over this ever since.

Back to the surgeon's recommendations:  I am looking at a rough-looking lumpectomy or a mastectomy with breast reconstruction.   I'm having genetic testing to see if I have a predisposition to breast cancer.  If I do, I will have a bi-lateral mastectomy.  She would not be able to tell if my lymph nodes are affected until she removes them during surgery and has them tested.  If they are positive for cancer, I would be looking at chemotherapy.  If not, I may get away without chemo.  I may be a candidate for Tamoxifen for 5+ years instead. Radiation is to be determined.  Stage of cancer is to be determined after surgery - most likely I am stage 2b.  I have an 85% chance of living for 5 more years.  Sweet, right? :).....nothing like an honest discussion about your life span.  Breast reconstruction would involve a spacer placed behind my chest muscle that is slowly expanded over 2-3 months until it is the right size for an implant. First surgery could be in about 3-4 weeks, with an overnight hospital stay and out of work for 6 weeks.  Then the second (breast reconstruction) surgery would be a few months later and I would be out of work for about 2 weeks. 

Dave and I went to lunch and shared a carafe of wine.....and had philosophical discussions.  Fun times. I've been in denial, but this is becoming a little more real to me.

On the horizon:  I meet with a plastic surgeon on Monday.  I get 2 more second opinions on Tuesday (Dr. Caldwell and Dr. Hetland).  Then a week from that I head to Cleveland Clinic to consult with a surgeon, oncologist, radiologist, and plastic surgeon.  I'm exhausted from today's information - not sure I can do this several more times.

But, looking on the bright side, I don't have cancer of the aorta! :)

And in the meantime, Dave is enjoying looking at pictures of breast reconstruction.  Sigh. :) :)

No results

Been waiting allllllllllllll day for my MRI results.  Elizabeth Wende Breast Clinic said that they would send them to my doctor by today.  Many people have shared experiences of EWBC sending them the SAME day to their doctor.  Something is going on between Borg & Ide and EWBC.
EWBC didn't get the mammogram images from B&I in order to write up my MRI report.  B&I had put them on CDs for me and I hand delivered them to EWBC.  Since B&I apparently hates me, I'm assuming I delivered blank CDs.  Pretty pissed does not begin to explain how I'm feeling right now.....

We had an appointment with my gyn and got a lot of questions answered.  We requested a BRCA2 (genetic) test which required me to fill a test tube with spit.  Lovely.  Results in 4 weeks.  We were also easily able to get all the biopsy pathology reports that B&I and ACM refused to give me.  Unbelievable.

So no MRI results and we see our first surgeon at 10:30am tomorrow morning. Dr. Maduros at Rochester General.  She has requested the MRI results for our appointment too.  We'll see....

MRI

The MRI was not bad.  The doctor had offered me a xanax and I accepted.  Wow, I can see how people could get addicted to those.  It slowed all the anxiety in my heart and breathing down.  So nice.  I was only in the machine for 20 minutes and the contrast dye didn't hurt.  Elizabeth Wende Breast Clinic is seriously the best.  They gave me a CD with the images, without me even asking.

Borg & Ide Imaging, on the other hand, I have been ready to throttle!  They have shortened my life span by three years with stress alone.   I have been trying to get a copy of my biopsy pathology report from them and it's a no-go.  They tell me to call the lab, ACM, for a copy.  ACM says they cannot give it to me, only Borg & Ide.  B & I tell me that only ACM can give it to me.  They have changed their story every time I have called - BOTH places - and I'm not kidding.....I have called at least 4 times to each place.  By the last 2 calls, I had lost my cool and was yelling.  I just don't get it.  When Dave is talking to potential surgeons, they ask him questions that only the pathology report can give.  It's really been unbelievable.

Anyway, results from MRI should come from my gyn tomorrow.  Also, going to ask about getting genetic testing.

In the meantime, I am trying to explain to Will and James, in 4 year old language, what is happening to me.  I have showed them my bruises and bandages from the biopsies.

Me:  Remember when the doctor had to check my breast with the needle?
Will/James:  (wide eyed, open mouthed, horrified looks). yes...
Me:  The doctor found a little disease in there and they are going to have to do a little surgery to take the diseased part out.
Will/James:  (slight hesitation). Can we get the nerf guns out?

:D

Pink is not my color.....

.....but my left breast does not agree.  It went rogue.....developed two lumps.  I found them in mid-October.  I spent three days trying to determine if I was really feeling lumps.  Then I went to Dr. Google and "we" both agreed it was just fibroids....dense breast tissue......hormones.  Dave was like, "Nah, call your real doctor just for fun."  I did.  They had me come in that day.  Yes, two lumps - $15 co-pay please and thanks.  Onto a diagnostic mammogram at Borg & Ide the next week.  3-D mammogram, ultra-sound and a recommendation to have a biopsy.  Dave sat FOREVER in the main waiting room and I was in the inner waiting room.  We were texting each other, trying to make sense of things.  Trying to figure out what questions to ask.  He asked if he should come back to my waiting room.  Um, not unless you want to sit with a bunch of women not wearing shirts.  I begged them to get me in  for the biopsy ASAP.  How about in 30 minutes?  Eeeek - okay.  I had zero time to google what I was in for.  It wasn't a fine needle aspiration.  It was a core biopsy guided with ultrasound in a room that was about 45 degrees. They prepped me for surgery that I was to be awake for.  One shot of lidocaine.  Then a scalpel cut.  Then 4 of the biggest needles I have ever laid eyes on.  The doctor had to push her weight on them to get them in.  The best way to explain it is if you have ever tried to put a large needle through leather.  It took a lot of time and effort for each needle and then it would SNAP a chunk of me - the biopsy.  Thought I was done, but no.  That was all for the first tumor.  Lidocaine and 5 biopsy needles for the second tumor.  Then, two more insertions of titanium clips for each tumor - markers.  Then the long wait for results that would take 2 days.   Except, this was over a weekend, so it was really 4 days.

I told Dave that bad things come in threes.  I found two lumps - bad thing #1, I hit a deer and dented the front of my van the morning after the biopsy - bad thing #2.  I knew a cancer diagnosis would be bad thing #3.  But, that Sunday the Buffalo Bills LOST!  Dave was like "That's the bad thing #3, you're going to get good news tomorrow!!"  Except, I still had the worst nervous stomach ache....

I tried not to google too much....but.....

I had to wait until the end of the 4th day, Monday, and I still hadn't heard.  When my anxiety levels reached maximum capacity, I called.  The receptionist nonchalantly told me "Oh, yes, you had a mammogram and then a cyst drained.  You're all set.  Just call your primary doctor".  Um, no my friend, these were not cysts.  These were tumors and your office said they would call to tell me if they were cancerous or not.  "Oh, um, we'll have someone call you back."  Back to waiting. Then, finally the phone call.  I bribed my kids with chocolate to be quiet so I could hear.   1 benign, 1 cancerous.  Grade 2 out of 3.  Not encapsulated.  And then a lot of talk of what to do next.  I blanked out a bit.  I've been doing that a lot since this diagnosis.

Thank God for Dave. He has been making it his business to learn everything.  He has scheduled consultations with four Rochester surgeons.   We will go to those together in early November.

Tomorrow, we drop the kids off at daycare at 6:30am to get to my next step - an MRI.  This will determine what stage I'm at and if it has spread to my lymph nodes. I'm still in denial.  I hope reality doesn't hit me too hard tomorrow.