Surgery Time!

My mastectomy was scheduled for Thursday March 7th.  My husband and I left the house at 5:30am that morning because we were due to check in at 6am with a surgery time of 7:15am.  No eating or drinking after midnight.  No eating was easy but when you drink as much water as I do, simply being awake without a glass of water is torture.  By the time we got to the hospital I swear I was dying of dehydration... my tongue kept getting stuck to the roof of my mouth.  And I thought this was really annoying.... Ha! Annoying hadn't even started yet!

Getting Ready...

I checked in and was given the obligatory hospital robe and surgical socks to put on. Then I had to wait there until the surgeons showed up.  My husband, Dad, and Dad's girlfriend (my entertainment entourage) were there with me.  For 30 days prior to surgery I could not have any aspirin or any other type of medication that would result in thinning of the blood so I was very surprised and skeptical when they told me I needed to take an aspirin. Then I was mortified because of course I couldn't eat or drink anything so they had to administer the aspirin another way.... I thought once I had passed my infant months I would be done with people shoving things up my butt... I guess I was wrong. At this point I forgot about my annoying dry mouth.

Before surgery I had 2 nagging worries.  First of all, we had a great dinner the night before at the Olive Garden and I was unable to go to the bathroom that morning.  I was preoccupied with the thought that I was going to poop myself on the operating table.  This was always my biggest fear when I birthed my kids too. I guess everyone has that one weird thing that they obsess about.  My second fear was that I was going through all this and was going to end up with little boobs. 

I was there first for a mastectomy where Dr. Lindfield would remove all my breast tissue on both sides. Then she would run a series of complete pathology tests on the 3 tumors that were found to be cancerous and the 4th tumor which the MRI found but I opted not to have biopsied.  Secondly, Dr Lindfield was going to do a Sentinel Node Biopsy on the lymph nodes closest to my boobs on both sides. The purpose of this was to determine if the cancer had spread from the primary tumors to my lymphatic system. Once cancer spreads to the lympathic system it is much more likely to metastasize (or grow elsewhere in the body).  That would be bad.  As it was explained to me, Dr Lindfield was going to surgically remove the sentinel lymph node (the one closest to the tumors) and check it under a specific light that will make the injection I got yesterday glow. If she sees cancer, she will take the next lymph node and examine it again. This continues until she finds lymph nodes with no cancer. 

The third part of this surgery was reconstruction. Dr Burke would cut a triangle of skin, fat, and blood vessels from my tummy, cut it in 2, and then use that tissue to make me 2 new boobs.  This part was going to take awhile.  Apparently you can't just take skin and tissue from one part of the body, place it somewhere else, and then expect it to grow. Dr Burke needs to take the tissue with the main blood supply and reconnect it to a main artery and vein in my chest so that blood and oxygen could be delivered to the transplanted skin and fat. This portion of the surgery would need to be done under a microscope. Because of this part of the surgery, my family was told to expect me to be in surgery for 8-9 hours.  This was the part I was scared of. I am a bigger girl. I have not seen Dr Burke since my 2nd consult at the end of January. I never told him what I wanted. Since Dr Lindfield operates first and then Dr Burke, the nurses told me I probably wouldn't see him before I went under anesthesia. This made me nervous. So I did what any logical business person would do.... I wrote him a note on a post-it and left it taped to my tummy.  The note read:

Dr Burke - Please remember your inner "boob man" when doing my reconstruction. I left you plenty of "raw materials" and I trust you know that I don't need any of it. Take it all to assure I am properly proportioned up top. Good luck!"

 

 In addition to leaving a lovely note for Dr Burke, I was sporting event-specific paraphernalia. To cover the fact that I wasn't wearing any makeup, I wore my boob glasses given to me by my friends from the MMA Class of 1993 at my Bye Bye Boobie party. All the nurses in pre-op thought it was just great and humor makes the waiting before surgery so much more manageable. 

At about 8:00 am I saw Dr Lindfield in her scrubs with her cap on. She came over to make sure I was ready and that I have received my dose of aspirin (I swear she did that just to torture me).  When I assured her that I did, they came and attached an IV in my left arm connected to saline. Then they brought a large tank of gas and laid it next to me on the bed.  I said goodbye to my family and then they wheeled my bed through the scary halls of ECMC. I remember getting into the operating room and seeing that they had a large 42in LCD TV on the wall and were playing the morning show on the radio.  As they were moving me from my bed to a hard, cold table, I asked if the TV was there so we could watch the Walking Dead.  The nurse put a mask over my face and replied "not you, my dear"... I said "aw maaaaaa.......".

Waking Up...

As it turned out, I was not an open and shut case. My 8-9 hour surgery turned into a 13 hour surgery. I may be a big girl, but I have little itty bitty veins. Dr Burke had a really hard time reconnecting my blood supply in my chest.  When I woke up, it was 9:00 at night and they had given me 7 liters of fluid.  My husband said I was so swollen that my eyes were slits. Unfortunately I have no fun pictures of that. Even I would have liked to see that!



Grandma beating my foot with a water bottle

When I got out of surgery, I had 2 new boobs (Frankenboobs as I called them), 2 surgical slits under my armpits (Where the lymph nodes came out of), 4 drains in my chest (along with 4 holes for the drains to go into), one slit from one hip bone to the other where Dr Burke took my tummy away, and 2 drains in my abdomen above my pubic bone.  And with all this, I was in pain but not at any of these surgical sites. My feet hurt.  I have been suffering from heel spurs (Plantar fasciitis) for almost a year now. The pain had all but gone away though when I lost weight from my new clean eating diet that Grandma put me on.  Before the weight loss, I had the pain in check because I would go to a chiropractor and he would use a mini jack hammer on the plantar fascia tendon which would kill, but then feel better.  When I got out of surgery, my left foot was pounding. I have no idea why. It brought tears to my eyes.  I could feel my heart beat in my heel.  I was screaming for my family to get Dr Jafari (my chiropractor) to come with his jack hammer and kill the pain in my heel. Obviously Dr Jafari was not coming so my Grandmother defaulted to the next best thing... a water bottle.  She beat the hell out of my heel just like Dr Jafari would have with a full water bottle.  No matter how hard she hit, it wasn't helping, I kept telling her to hit it harder.  We got pictures of that because that was just weird.  My entire 7 day stay at the hospital, my heels gave me trouble. I guess it is for the best so I didn't focus on the fact that my torso looked like I had been autopsied.







The Road to a Mastectomy with DIEP Reconstruction

Preoperative Testing (Boring... but in case you were wondering)

I was pretty much living free and clear for weeks in February before the medical B/S started picking up. On Thursday February 21st I had to have fasting bloodwork done. I hate fasting bloodwork. Don't you want to see how my blood really looks because I will tell, my natural stage is not fasting. Quite the opposite.  No big deal though, Quest Diagnostics now takes appointments and they were really easy to get into right by work by 10:30 am.

PreOp with the Breast Specialist

Tuesday February 26th was my first preoperative appointment with Dr Lindfield.  My appointment was at 3, I was 5 minutes early, and I waited a half hour. Really not that bad compared to Dr Burke's office. Dr Lindfield's nurse took vitals, told me all my blood was perfect, and explained to me something called Lympedema.  Every time I went to Dr Lindfield's office I saw the poster for Lymphedema but nobody ever pointed it out to me so I assumed it did not apply to me. I was wrong. Lymphedema is a condition that is a risk whenever lymph nodes are removed rom around your extremities. In my case, they will be removing a few lymphnodes under each of my armpits to see if they are cancerous.  So I learned that if I end up with Lymphedema one or both of my arms would swell 10x their size.  If I know I am at risk, they can do things to prevent lymphedema, like using a special sleeve to prevent swelling. The test is $300 and insurance doesn't cover it. I opted to have it done and so they did it right there in the office. I didn't even know they were doing the test, it involved putting a sticker on my ankles and wrists and then getting a reading. I asked what the reading meant and they said nothing until they take a post-surgery test in 3-4 weeks. 

PreOp with my Primary Care Physician

Through-out all this I did not have a primary care physician. Dr Lindfield was not requiring that one sign off on my surgery but she did recommend I find one. I was referred to Daisy Wen by Dr Dougherty but she couldn't see me will May. Then I was referred to Christian Lates by my friend Kate and she said he was funny... big plus! So he wouldn't see me until May either. OK, whatever, I made an appointment to see him. His office did not like that I was going into surgery without his approval so they told me I must be wrong, they must be asking for a surgical clearance, so they pushed me in on Monday March 4th at 3:00 but come at 2:30 to fill out paperwork. I guess a full weeks noticed wasn't enough time to mail me those papers.

When March 4th came, I left work at 2 to get there by 2:30. I got there right at 2:30 and the receptionist told me I was already in the system so I was good to go. Well thank you, you could have checked that when I made my appointment, but afterall, it's just MY time. Clearly not as important as the doctors. However when I arrived at this appointment I was hit with something competely new and fresh... I sat down at 2:30 thinking I had 1/2 hour (and then some) to burn until my appoinment time, when a guy opened the waiting room door and called my name. So I went in. It was not a nurse or a receptionist, it was the doctor himself! He said he was waiting for the next patient to be queued and set up by the nurse, so he would occasionally try to see patients while he was waiting. He brought me in, got my basic info (Why I was there) but then he said "oh, you are BRAND new... I am sorry, for you I need the nurse to see you first to make sure you are set up in the system. I am so sorry".  I felt bad for him but I was amazed at this new process that I have never seen before.  We have all seen it... Appointment at 3, get called back at 3:15, you see a nurse at 3:40 and then you finally see a doctor at 4, 4:40, or later. And you sit in the office and seethe about why they can't stick to their own schedule. This doctor explained to me that half of his patients are here because they are sick and he can see them and determine what is wrong while in between patients... then when the nurse gets caught up, she can come do all the documenting, vitals, paperwork, etc. He said he saw no point in wandering around the office waiting for the nurse to get another patient ready, so he just sees people while they are waiting. Very "Doc" from Little House on the Prairie. Isn't that so cool???? Unheard of, right?

Well anyway since I was new I did have to wait for a nurse but she was in and then the doctor right afterwards.  By 3:30 I was out of there. The nurse and doctor were both dumbfounded that nobody was requiring their clearance for a DIEP flap mastectomy surgery, but either way the doc said I was a perfect candidate for surgery. He also mentioned I should consider a gastric-bypass surgery because even though I consume about 1600 calories a day and exercise regularly, a gastric-bypass would reset my hormones and help me lose weight.  I disagree with this statement 1000 times over but that is a whole different blog post. This one is about curing cancer.

CT Angio

Because I was having a mastectomy with reconstruction using  DIEP flap, the blood supply in my belly area was very important.  The plastic surgeon needed to know before surgery where to find the main blood flow in my gut so he knew where to connect it to the blood flow near my chest. This was important if the skin that was going to be transplanted from my belly to my chest was going to live and survive the transplant.  For this, I had to go to ECMC 2 days before surgery. ECMC is a very scary place.  There is so many medical companies all conglomerated into one building. It attracts many different type of people.  My first visit to the radiology dept just about scared the crap out of me. They didn't know why I was there, they had no script for my procedure, and worst of all, it was 11:00 and I had been fasting for this.  "please figure it out soon because I need a bottle of water stat or I will pass out...".  The good news is that once they got the script from Dr Burke (who said the script was sent up 2 weeks ago). I was in an out in 10 minutes.  The CT Angio involved me laying on a CT table on my back while the table brought me into the tube 2 times.  Then they gave me a radioactive dye injection that would highlight my arteries in my gut. Then they took 2 more pictures, and that was it.  Except for the stress of being at ECMC, this test was pretty easy.

Sentinel Node Injection

Less than 24 hours prior to surgery, I needed to go into Dr. Lindfield's office for a sentinel node injection.

Bye-Bye Boobie Party

I mentioned in my past posts that since my diagnosis I was on a very strict diet including no sugar, no dairy, no caffeine, no alcohol, no beef or pork, and no fruit. This diet is exhalted by many to result in slowed cancer growth.

I was sticking to my diet and herbal supplement plan unfailingly since January 8th, but I really really missed my wine.  Due to my surgery and preoccupation with surgery, I was going to miss drinking at a lot of fun social activities, like Valentine's Day, my anniversary, Super Bowl Sunday, and St Patty's Day. So once I had my surgery date scheduled, I also scheduled a party of sorts... one day that I could look forward to where I could hang out with friends, have some drinks, and eat some chicken wings, french fries or mozzarella sticks (3 things I craved desperately).  The weekend after my biopsy but before my diagnosis I went out with my BFF of 30+ years to a bar on a Saturday night. We had fun but I wore baggy jeans and a turtleneck... I clearly was totally out of practice on this bar thing, so I decided that not only was I going to have a party, but I was going to wear my most cleavage bearing, sexiest outfit I owned (which I actually didn't own any of , but I was going to get). I had to show off the girls and act like a girl should in a bar one more time before real boobs became a thing of the past for me. And so the concept of a "Bye-Bye-Boobie" party was born. 

Planning a Bye-Bye-Boobie Party

I planned my BBB party for Friday March 1st, the last Friday before my surgery.  It was already a busy weekend for me... Saturday morning I had to help my friend move, Saturday afternoon I had one last massage planned to try to fix my lower back pain before surgery, Saturday night I wanted to take the kids snow tubing, Sunday afternoon I was hosting a 10th birthday party for my daughter and also a birthday party for my husband. Then Sunday night we had league bowling.  Lots and lots to do.  And I was going to kick it all off at a bar Friday night. You have to understand that this logic really makes no sense to me.  I kept rolling my eyes at myself that with everything I had to get done I was going to waste time at a bar... but I just really wanted to do it, and this time, my id won out over my ego.

I spoke to my good friend Cori who owns Blue Wall which is an awesome place to hang out for drinks, has great food, darts, and a large room to hang out where it is not so loud. She offered me a great flat rate drinking deal for 3 hours for all guests. The only problem was that it was 20 minutes away and we were going to both be drinking (Hubby and I)  and the kids would be home, maybe alone.  We needed something closer. 

So being close to Transit Rd, I mentally walked down the street and thought of which bars are there. I wanted to put out an open invite but thought it was awkward. "Hey, come out and drink with me and see my cleavage one last time!".  Who would come to that???  Then I found this bar that has been like 5 bars (when it was even open) since I moved to Lancaster in 2001. It was now called Dee's Firehouse Bar and Grill and it was huge! There was one level that had a comfy bar, another level for pool, darts, and a dance floor, and then 2 semi-separated rooms for people to sit and eat where it wasn't so loud. And it was on the way to the Depew Boys and Girls Club where my kids hang out. So I stopped in one night on my way to get the kids and asked to speak with Dee (I did some research on Urban Spoon to learn that Dee was in fact the owner). Dee happened to be in that night and she was a pleasant blonde woman. Being that I am not shy, I came right out and told her that I wanted to have a bye-bye-boobie party.  I told her I wanted to invite a bunch of friends and maybe 5 would come, maybe 25... I had no idea. It was not a benefit, I did not want to pay for anyone, but I wanted to offer a drink package for anyone who wanted to come. I can't commit to a number and I can't put down a deposit. Oh... and I may want to wear nothing more than a bra that night. Would she be ok with that?  Yes, I realize how ridiculous that sounds, but to my surprise Dee checked her calendar, March 1st was open, she already had a DJ booked for that night, and to top it all off, she herself was a breast cancer survivor so she was more than open to me just wearing a bra. Dee was very accommodating. She offered a $15 per person, beer, wine, and well drink package from 8-11 that I could advertise to my guests.  Now there was something in it for them too. A cheap night out!

So I advertised my BBB party as a "Breastacular Party" on a Facebook event and put it out there.  I had about 10-12 friends I thought would come, everyone else would just "like it" and laugh because it was a really weird thing to do.  I was hoping some friends would come, but I really just wanted to hang out, look sexy, and drink wine. I could do that myself in the worst case scenario.  Like I said earlier, I had nothing really sexy or revealing to wear. So knowing I wouldn't be needing any of my old bras, I set out to bedazzle one (my new favorite pasttime) to make it into acceptable sexy bar wear.  When I was researching, bedazzled bras already exist and are huge in bigger cities. They are called RAVE bras.   I went to Joann's with my 40% coupons in hand and bought $25 in glue on gems, beads, glitter, and some glue sticks for my glue guns and went to work. And here is the beautiful piece of work I came up with! Couldn't wait to wear it in public!


My event on Facebook gathered 46 people stating that they were going.  But this didn't really mean anything to me. I know how Facebook goes... it is all too easy to click YES I AM GOING and never have any intentions on showing up. I do it myself all the time. I was a little concerned because I had learned that a lot of my family was also going including Aunts, cousins, in laws... maybe wearing my bra in public was not such a good idea after all.  My Dad and his girlfriend were coming. Which lead to the debacle... do I invite my grandmother?  Most people would be like "Hell no!"... Grandmas do not belong in bars on Friday nights. But my Grandma was different. I have mentioned her before... she is an iridologist, a nutritionist, and an herbalist. She is 81 years old and still works full time and travels the world healing people.  She gave me my diet and supplement plan.  She still wears cooler clothes than I wear.  And she can drink. My Grandmother is very much a part of our every day life and with extended cousins, aunts, sisters, brothers, etc all coming... she would feel extremely hurt if I left her out. So the night before the party I called to invite her.  This wasn't supposed to be a family gathering, but if the rest of the family found out through facebook, I couldn't exclude her. But I warned her that they had shitty boxed wine and she wouldn't like it.

The Day of the Party

To my surprise as Friday came, I almost  had the nerve to wear the bra in public. I spent my lunch hour that day looking for a shirt to wear over it that was sheer. I found one, although a bit too colorful for me (it wasn't black or purple) but it would work. My husband and I got to Dee's 1/2 hour early in case there were any early folks. After all, 8:00 is kind of late for old people like us to just be going out... I usually turn in at 9:30.  When we got there, my husband's Aunt, Uncle, Cousin, cousin-in-law, and baby were there having dinner. They had come for the party! This shocked me because my husband and his family don't stay in touch like my family does. I hadn't even seen his aunt and uncle in many years. It was really great to see them but then a new emotion came over me that I can't explain. It was like I was thinking "why would these people I hardly know come out to see me?" I still can't explain that emotion. Shame? Shyness? Humility? I can't put my thumb on it. It wasn't good, it made me want to crawl into a shell and hide because up to this point it was all fun and games.  These guys weren't there to drink, they came to support me. I wasn't sure how that made me feel. I think I felt like I didn't deserve it and so then I felt like I was stealing it.  And there... now you know why I take Prozac! This is how my brain works.  (But the truth is, I stopped taking my Prozac when I was diagnosed, so I am 2 months anti-depressant free!). 

Dee gave me 50 bracelets to sell, so I camped out by the door and greeted people as they came in.  I learned quickly that many of the people didn't actually want to drink, they just wanted to be there (Again this confused me... not want to drink????)  So those people I did not sell a wrist band to because I didn't feel they would get their money's worth. I am not sure if I was supposed to do that or not, but that's what I did.

I spent most of the night with my shirt on over my bra although I flashed on demand. This got easier throughout the night as I drank more. I started with seltzer water with a bit of vodka, then I had wine, then I had beer, then by the end of the night I was drinking rum and diet coke in a big Red Solo Cup (and of course our DJ played that song for the occasion).



Me and my daughter's friend's Mom
showing off our bedazzled bras

At the end of the night, I turned in 4 unsold bracelets. So that means 46 people came out to hang out with me and see my cleavage. yay! Plus the people I didn't sell a bracelet to.  My kids' friends' parents came out to party... one of them even wore a bedazzled bra of her own! My cousins, extended cousins, sister and brother in laws, sisters, brothers, father, father's girlfriend, and yes, even my grandparents came out! Friends from work came out including some higher executives.  Friends from my past life at Ingram Micro who I kept in touch with on Facebook came out. Friends from high school who I kept in touch with on Facebook came out. In fact, they brought me the party favor of the night - Boobie Glasses! Not only did these glasses grace the face of everyone dancing that night, but I had planned on wearing them into surgery on Thursday... just to remind the surgeon that I wanted to walk out of there with a nice pair!



My sister and grandmother dancing with the boobie glasses

My cousin rockin the boobie glasses

My extended cousin (actually my grandfather's cousin I think) came and brought me a gift of encouragement including a bracelet and a pink ribbon Tshirt.  My friends from HS brought me the  boobie glasses and an Olive Garden gift certificate (which I had intended on using quickly!).  Halfway through the night, my brother requested "I Like Big Butts" by Sir Mix-a-Lot from the DJ and had dedicated it to me. Only in my family would this be a showing of love. :o) 
It was dedicated to me, so of course I had to dance.... and thank God I had a massage scheduled the next day... dancing is hard and painful.

Me showing off my bedazzled Rave bra
(wearing the boobie glasses)

Around 11:00 after I danced to the Big Butt song, Dee asked me to pull a winning ticket. That night was also Dee's Firehouse's 1 year anniversary so I thought there was a giveaway. Shit, I never even bought a ticket which sucks because I was feeling lucky! I pulled a name I didn't recognize so it must have been someone unrelated to me at the bar. To my surprise, Dee gave me and Rory $250! The ticket was for a 50/50 and I was the recipient of the 50! Shit. My makeup was spent at that time and I didn't bring anymore because, like I mentioned before, I don't know how to do the bar thing. I had that weird feeling again like I was stealing support that I didn't deserve.  Maybe this was a bad idea.... but I got over that quickly with a rum and diet coke.... 2 things my Grandmother warned me against, but I didn't care. She apparently didn't care either because she raised her toast to me as she was dancing with my sister wearing the boobie glasses.

The drink specials were from 8-11.  At 1:30 hubby and I were the last ones at the bar and so we ventured home.  This party was so much better than I had thought it was going to be! My only complaint was that there were so many people and that I was selling wristbands for the drink specials that I didn't have more than 5 minutes to spend with anyone. And I forgot to eat... this was my night to eat fried cheese sticks, and chicken wings, and french fries and I was so busy greeting people and taking money that I never had any of it. 

My takeaway from all this.... if you have breast cancer, do this. Have a party. Do it before you have your surgery or your lumpectomy... while you still feel good.  It's a great reason to get your entire support group together in one place. It will do everyone good to get together and have fun. At this point you are probably doctored out and stressed out anyway.  Don't we need more reasons to have parties anyway? 

My Surgery Date is Set

The day I received my BRCA genetic test results, I was pretty upset that I had to pay a $40 copay and sit in the office alone for 1/2 hour just to get a yes or no test result. As long as I was there and I paid for their time, I was not leaving this office without a specific surgery date and time set.

I had told Dr Burke, the plastic surgeon, last Wednesday that I wanted to go forward with the double mastectomy with autologous reconstruction using the DIEP flap and he said he would have his scheduler call me later that day. Now it was Monday and I had not heard from Dr Burke's office, I left a voicemail at Dr Lindfield's office to get her scheduler on the phone and she also didn't call me back. Both Dr Lindfield and Dr Burke will be participating simultaneously in the surgery so I will schedule with whomever will call me back. I asked the see the scheduler at Dr Lindfield's office and pretty much was not leaving until she saw me. I felt very self righteous until the scheduler came out and said "Christina Smith? Great! I asked the nurse not to let you leave until I saw you, I want to schedule your surgery." And I thought I was being all bad ass by putting my foot down. I just can't be bad ass even when I try. 

The scheduler assigned me my D-Day - Thursday March 7th. That was the day my boobs as I know them would go away forever. Because I had chosen the DIEP flap transplant from the stomach to my chest, the surgery would take much longer than just a mastectomy or with the mastectomy with expanders for implants. I had to be at ECMC at 6am for 7:30 surgery that was expected to last 9-10 hours. Then I would be recovering at ECMC for 4-5 days after that.

I can't explain how I felt when I was finally given a date. Everything started to feel more real. I was relieved because some closure was in view. But at the same time, I started to feel terrified. 10 hours on the operating table was a long time. What if something goes wrong? This would be my "final countdown"... I was reminded of an episode of "Medium" that I saw where Patricia Arquette wearing special sunglasses was able to see how many days someone had left to live when it was displayed on their foreheads.What if mine was down to double digits?

 



Sentinel Node Biopsy Injection

So I had my date. And I had a slew of preoperative tests and appoinments that had to be done beforehand. Bloodwork had to be done, a pre-op checkup had to be done, and finally, the day before the surgery, I had to go into the office (another $40 copay) to get a blue dye injected into my breasts. Part of the mastectomy will be a Sentile Node Biopsy which involves removing the closest lymph node to my tumors and biopsying it for cancer. If cancer cells are found, they remove the next lymph node. And if cancer is found there, they move on to the next, and the next, and so on until a lymph is found to not show any signs of cancer. How far the cancer has spread will determine what type of post-surgical treatment I will need... chemotherapy, radiation, hormone-controlling drugs, etc. To make these lymph nodes easier to see, I would need the blue dye injection. A side effect of this injection is that my spit, sweat, and tears may turn blue temporarily. I can't wait to see this!


So. That is it. Now we just wait for March 7th. I mentioned before that from now until D-Day, I was no longer hiding my breasts. They weren't going to be around for much longer, so I am taking care of them while I have them. Also, I have been very strict about my anti-cancer diet including no alcohol (or coffee, or sugar, or wheat, or cheese...). Before my surgery, I was definitely going to blow caution into the wind at least once and have some fun. I decided to have a "bye-bye-boobie" party right before my surgery. For one night, I am planning on pretending I don't have cancer, drinking too much, dancing, and wearing a very revealing shirt. Just for one night. And so I planned it for Friday March 1st. The girls' last night out.  :o)


 

BRCA Genetic Testing

Back when I had met the oncologist for the first time in early January, Dr Dougherty had told me that one part of my cancer intriqued him. He told me that I had a 67 year old's cancer in a 37 year old's body.  As I read more about Invasive Ductal Carcinoma, I did in fact read that it is most common in women over 50. Dougherty thought this would be explained if I had a genetic history of breast cancer in my family, or any cancer for that matter, but since I didn't have evidence of that, he ordered a genetic test.

When he said "genetic testing" I was hoping to learn that my real parents were Bill & Melinda Gates or that I had some mutated gene that made me awesome. I had no idea what they were really looking for.

BRCA1 and BRCA2 Mutations

As it turns out, in this case "genetic testing" meant that the doctors were going to take a DNA sample to find if I had a mutation of the BRCA1 or BRCA2 gene.  The BRCA genes are part of everyone's DNA and their purpose is to supress the growth of tumors in the body. If the BRCA1 or BRCA2 gene is mutated, tumors can grow much more aggressively in the body.  You would think that having this mutation would make someone much more prone to any kind of tumorous cancer or cysts but studies have linked this mutation specifically to breast cancer (in women and men) and ovarian cancer. 

If the genetic test showed that I had this mutation, not only would I be at risk for aggressive growth of the tumors I had already, but I had almost a 60% chance of contracting ovarian cancer in the future. In fact, Dougherty said that if I did test positive for this mutation, he would recommmend having my ovaries removed proactively. That was pretty scary. And it got worse. Not only would I have been destined to a cancerous life, there was a 50% chance I would pass this on to my kids and then they would also be at high risk for early-life breast cancer (prior to age 50) and ovarian cancers. Having this mutation would be a very bad thing, but it would also explain where the heck this cancer came from.

The BRCA Test

In order for the doctors to administer the BRCA genetic test, they needed prior authorization from my health insurance.  Apparently they don't authorize payment for this test unless it is deemed medically necessary (please tell me why knowing this information wouldn't be medically necessary for anyone????)  By medically necessary, they mean you must either (a) have a parent or sibling who tested positive for the BRCA mutation or (b) have unexplained early onset cancer (that's me). It took about 2 weeks to get the medical clearance from Blue Cross, but I finally got the appointment to get 'er done.

I figured this test would be a simple blood draw or cheek swab (I see that on Law and Order all the time) but instead it was kind of weird. To administer this test, I had to refrain from any food, water, smoke, or anything in my mouth for 1 hour prior to the test. When I got to the doctor's office, I had to swish a mouthful of Scope for 30 seconds and spit it into a test tube. I had to do this 2 times so they could get 2 samples. And that was it. Easiest test I ever took! (Except the PET scan a few weeks before when I got to lay in a dark room with relaxing music and warm sheets. That was the easiest test I had to take.)

The Results

OK, so very few things really pissed me off during this entire cancer ordeal. This was one of them. Apparently, per HIPAA, doctors cannot give results over the phone. Ironically just a few weeks before my ob/gyn called me at work at 11am on a Monday and said "How are you today? I am calling to tell you that you have cancer."  However, this stupid genetic test could not be conveyed over the phone legally.  Because of this, I waited 10 days for the results to come in and then when the doctor got the results, they had to schedule an office visit for me to get the results.  I was administered the test by Dr Lindfield's office (breast specialist) but it was originally ordered by Dr. Dougherty (oncologist) so I made sure that the results were copied to Dougherty's office.  I tried to skirt this whole office visit thing by calling Dougherty's office to get the results over the phone. They said they would get them and call me right back. They called me back and said Dr Lindfield's office wouldn't give the results to them over the phone until I came into the office to receive them personally. #1 - I hate you. I am so office visited out. I have work to do and things to get done. #2 - Dr Lindfield's office better not charge me a copay for this. I paid the copay to take the test, I shouldn't have to pay the copay to receive the test results. On top of it all, Lindfield is a specialist so the copay is double that of a primary care doctor.

Lindfield's office called me Thursday and made an appointment for me to come in for my results the next Monday at 3. I arrived 5 minutes to 3 and those <enter profanities here> made me pay a copay.  I feel so bad for the woman behind the counter just trying to do her job because I spewed attitude all over that counter. The eye rolling, the sarcastic remarks about it being a stupid test that I don't even care about, the flaring nostrils... Insurance fraud is what that is. This is part of what is wrong with our health care system.... and that is my political statement for the day.

So I sat in an empty patient room waiting for my results for a half hour. Then the nurse came in, gave me a pamphlet explaining BRCA results, and then told me I did not test positive for the mutation.

Yay? So I am fine and not destined to an ovary-free life of cancer and my kids are pretty safe too. This is good. I won't offend you with all the bad things I had to say about this whole bulls--t process and how much it costed me.  Granted it was only $80 ($40 x 2), but my time is worth something too, and with all the doctors appoinments I have had, I am going broke quickly. I'd like to show that nurse what I think of her BRCA tests...

Unsettling News

On Friday February 1st, I received the written dictated record of my mammogram, ultrasound, and core biopsies at Windsong Radiology.  I had my first mammogram back in February 2011 at Spectrum Radiology as a baseline when I was 35 years old. Spectrum, nor my ob/gyn called me with results of that mammogram, and since it was for a baseline and I had no problems, I didn't worry that they called. Most women know that the rule of thumb with ob/gyn's is that no news is good news. If they call you a few days after your appointment, you are in trouble. 

So when I had gone to Windsong for my lump, I told them that I had a baseline mammogram at Spectrum 2 years ago and it was normal.  When I received my written record from Windsong, I was shocked at what I read.  Dr. Small from Windsong had requested my mammogram films from Spectrum and received them 2 days after my recent mammogram. Upon inspection, she noted that I very visibly had 2 tumors in my right breast and the start of a 3rd tumor in my left breast. If you remember, my recent mammogram showed all 3 of these tumors clearly and my MRI showed a 4th tumor in my left breast. 

According to Dr. Small, the radiologist on staff at Windsong, my mammogram from 2/21/11 from
Spectrum Radiology showed a developing irregular 16mm mass and another smaller mass just behind it. As of 1/3/13 those masses are now 17mmx11mmx14mm and 5x2x5mm and are malignant.

She also notes a mass developing with "ill-defined" margin with tissue distortion in the upper inner quadrant of the left breast.  This tumor is now 9mm x 6mm x 14mm and malignant.

Let me break all this stuff down into english... I had cancer two years ago. And nobody told me.  Maybe this is why I periodically would experience painful throbbing in my chest. Who knows. I am very thankful that I switched to Windsong Radiology and I am very thankful that I switched to my new doctor, Dr. Steven Mechler (thanks JenD!).

So what do I do about this? My first instinct is to sue for malpractice. But for what? I didn't die. I still have to treat it now, just as I would have 2 years ago. My good friend/cousin Jenna who recently passed the NYS Bar exam and is well on her way to being an accomplished lawyer referred me to a friend in the legal business. This lawyer told me that unless my chances of survival are dramatically reduced because of the 2 years that passed, I don't have much of a case.  Also, there is a statute of limitations of 30 months on this type of law suit, so I would have 2 1/2 years from when 'treatment' ended, which in my case was the date of the mammogram on 2/21/11. 

So... I guess I move forward, plans unchanged, and be thankful that my chances of survival were not reduced by this little oversight. Also, I am someone gratified knowing just how fast my tumors are growing (if you follow math, you can tell they are growing pretty slowly).  But in the back of my mind, I wonder how so many people are able to sue for medical malpractice when you have to be on he brink of death before you have a case?  Not only did the radiologist not tell me what they saw or request additional tests, my ob/gyn who ordered the mammogram never told me.  Maybe the tumors weren't malignant back in 2011, but shouldn't they have checked?  My faith in the medical profession sank to new lows today.

Consult #2 Follow Up - Convincing the Entourage

Setting My Plans in Stone

After I met Doctor Burke, I had to daunting task of convincing my family that the autologous reconstruction was the best choice.  Up to this point, we had all been on the same page that the path of least resistance was the way to go, and in this case, the path of least resistance was reconstruction using expanders and breast implants. My entertainment entourage was convinced that the method with the fastest initial surgery and least time in the hospital was the best way to reduce risks. They also thought that since the majority of reconstruction cases in WNY go this route, it was the safest bet.  I was on a mission to convince them otherwise.

On Wednesday January 30th, I brought my entertainment entourage back to ECMC to meet with Dr. Burke. He had promised to go through the dog and pony complete with white board drawings for my entourage.  Once again we waited for well over an hour to be seen and we saw two different nurses before the doctor was able to come in.   When he did finally enter the room, he was wearing a nice shirt, a tie, ironed pants, and the coolest pink plaid socks I had ever seen.  Immediately, my entertainment entourage knew that this guy was the proper fit. 

Dr Burke went through the pros and cons of each type of reconstruction, complete with drawings.  This time, since my entourage was more critical than I was, he went further into the complications that can arise from autologous reconstruction, especially if I end up needing radiation, which won't be known until the tumors, breast tissue, and lymph nodes are removed and tested during the mastectomy.  The whole time he was repeating to them what he told me the week before, my mind was wandering. I had lost almost 20 lbs at this point and my belly fat was ever so slowly shrinking. Like I mentioned before, when you have a larger than normal backside, you need a larger than normal chest to balance it out. All of a sudden I became terrified that I was going to lose 3/4 of the size of my natural chest. Maybe implants were the way to go after all... but the prior doctor told me she couldn't get me back up to my natural size even with implants, so I was not sure that there was much of a tradeoff.  I was a little let down that he couldn't remove the scars from my previous gallbladder removal surgery from 2007. I had plans that when I got my weight under control I was going to get Gerber Daisies tatooed over each of those scars because they were on my stomach. Now those scars are going to be on my boobs... no they WILL BE my boobs. Randomly placed Gerber Daisies may not be so cool anymore... and at this point, my entire chest and abdomen will be one huge scar so what the heck. What's the point?  Maybe in a few years I will get a flowering vine tatooed over my soon to be stomach scar.  Plus I will be getting nipples tatooed on... me and my tatoo artist are going to become very good friends. 

When all was said and done, by looking at their faces, my entourage was really no more convinced that this autologous reconstruction was the right choice than they were when they got there. They were, however, convinced that Dr. Burke was the right guy for the job.

Committing to a Plan

At this point, I had told everyone that I hadn't changed my mind and I still wanted autologous reconstruction, so Dr. Burke said he would call Dr. Lindfield's office and have them call me to schedule.  He was currently scheduling out 5-6 weeks so I could expect an early to mid-March surgery date. I was ok with this, even though 2 weeks before this I was freaking out that I had cancer growing in me and nobody was eager to remove it.  Between the herbal supplements I was taking and the anti-cancer diet, I was feeling better and convinced that the rapid spread of cancer was no longer a concern. I think the cancer may even have been shrinking. 

Sitting there in Dr. Burke's office I came to the realization that the relationship between me and my boobs was about to end, and the replacements may not look as nice. I was going to have to celebrate my boobs while I still had them.  That meant tight shirts without being embarrassed that the tightness also showed off my gut or made my butt look big.  It meant low cut shirts - I already preferred V-necks over crews but now I was looking for deep V-necks or scoop neck shirts.  It also meant I had to go out and get new bras (ones that fit me). Not only were they going to cut my boobs off, the weight loss I had experienced had already taken its toll and the new bras I bought back in November were gapping on the side. The Boob Elimination Period had begun and I was not in any hurry for it to be over.  The next 5-6 weeks were going to be "Boobies on Parade"!