Old Before My Time

 Today we met my oncologist.  I walked into the waiting room and everyone was at least a hundred.  It was super depressing and sickly-feeling.  Thankfully, the oncologist was very positive, young, and really took the time to explain everything, answer questions, and lay out a game plan for what the next few months are going to look like.  So here’s the deal: 3 weeks after my surgery I will be starting chemo.  I do 6 cycles which means I go in for infusions once every 3 weeks for 4 ½ months.  I have to have a procedure done beforehand where they put a port in my chest so they don’t have to stick my arm every time.  Sounds attractive, but at least it’s hidden under my shirt.  Along with the chemo cocktail which should end in June, I will be taking a drug called Herceptin which, like the chemo drugs, I take intravenously, but apparently the side effects are much less than the chemo.  I am on that for one year.  Because my type of cancer is considered triple positive (a good thing apparently because it means it is receptive to drugs), I will also need to take a pill called Tamoxifen for five years.  Yes, five YEARS!  (If my lymph nodes come back positive after the surgery then I will also have to get radiation post-chemo, 5 days a week for 6 ½ weeks, but I can’t even go there right now).  Considering the only meds I currently take are a multi-vitamin and the occasional Advil, I think my body is going to be in for quite a shock.

How big a shock?  Well, let’s see.  The universal side effects are nausea, fatigue, and of course hair loss (which apparently falls out fairly predictably at 2 ½ weeks into chemo).  Alright, knew that was coming.  There’s a whole slew of other troubling less common side effects (like heart failure!) that I won’t get into, but the other one that applies to me is early menopause.  I have about a 50/50 chance that this will trigger early menopause.  Are you kidding me?!  I am expecting my AARP membership in the mail any day.
The truth is John and I were on the fence about having a third child.  He was perhaps leaning a little more towards no, and me towards yes, but it still pisses me off that the choice is no longer mine.  Even if I get lucky and don't go into early menopause, the doctor's recommendation would be to not get pregnant for 2 years which is stretching it a little too late for my advanced maternal age!  Even then, I'd have to take a break from the five year Tamoxifen which would put my treatment at risk, so really it's a no go.  I know I should feel incredibly lucky that I had my two awesome boys before all of this happened, but at the same time I can't help feeling a little...cheated I guess.  I spoke with a woman recently who was diagnosed with breast cancer while she was pregnant.  They ended up taking the baby early at 7 months, and all went well, but she had her first round of chemo when the baby was one week old.  Can you imagine?  Remember how lousy you feel one week post-partum and then adding chemo on top of that?!  Makes me seriously want to give myself a slap for whining when I think of being in that situation. 

Reconstruction

I’ll be honest, when I first heard the word mastectomy I freaked out.  Apparently what I envisioned --a completely flat, scarred chest on one side—is not at all what is done anymore.  In fact, if there’s any part to this whole experience that has surprised me in a good way, it’s the plastic surgery angle.  I realize my Playboy days are over, but at least I’m hopeful that I won’t look completely freakish.  Once my surgeon is done removing the breast tissue, and whatever lymph nodes she needs to take during the operation, the plastic surgeon tags in and starts the reconstruction process.  He’ll put an expander in, which he fills partially with saline, and then every week he will keep inserting small amounts of saline to stretch out the new tissue until it comes close to matching the other side.  Kind of like braces in reverse.   

Once that “pocket “ is created there are two options for filling it – an implant or a tissue transplant.  Even before my consult with the plastic surgeon, I was leaning toward implant.  I know some people like the idea of using their own tissue and having the added benefit of a tummy tuck, but honestly, I don’t see the point of cutting up another area on my body and having double the recovery time.  It seems like “robbing Peter to pay Paul”, as they say.   From what I’ve read, the Diep flap procedure doesn’t take as much muscle tissue from your abdomen as the Tram flap one does, so you’re less likely to have trouble, but I am still envisioning doing a sit-up and having my gut rip open.  As it turns out, the plastic surgeon said I’m not a great candidate for the tissue option anyway, unless I bulk up on fat between now and the surgery.  A milkshake and Five Guys binge?  Tempting…but I’m going to stick with the silicone, for now.  

It was such a surreal experience sitting in that beautiful plastic surgeon's office in my white spa robe, thinking I could be another client sipping cucumber water and casually discussing my upcoming botox treatment. The spa day that wasn't. I was tearing up even while filling out the health forms at the front desk, and I wondered what a strange mix of clientele they must experience. Certainly not a place I'd ever thought I'd find myself, but happy as hell I qualify for reconstruction, even if I'd rather be getting a pedicure.

Surgery Explained

One of the hardest parts about this whole process is undoubtedly the WAITING.  From the minute you're diagnosed all you can think about is cancer coursing through your whole body, ready to drop you dead any minute.  Is it in my other breast?  Has it spread anywhere else?  What if it takes weeks to get a surgery date?  Am I going to live to see my kids next birthdays?  The unanswered questions are killer.

We had our first consult with the surgeon today who was able to give us at least a start of a game plan.  We spent three hours with her.  Thank God John was with me taking notes because after hearing the words "surgery" and "chemo" and "radiation" I felt like I was ready to slide out of my seat onto the floor.  One piece of good news is that the MRI showed no traces of cancer in the left breast, and contrary to what I would have expected, breast cancer doesn't jump from breast to breast (unless you have a certain BRCA gene which is hereditary) so I don't have any higher chance of developing it on the other side than the general population would.  I will have to undergo genetic testing for the BRCA mutation, but with no signs of breast cancer in our family it's not expected to come back positive - but keep your fingers crossed.

From the results that did come back, I have three, possibly four, small cancerous lumps that are spread far enough apart that my surgeon is recommending a mastectomy.  I guess there are basically two choices when it comes to surgery - a lumpectomy with radiation or a full mastectomy.  Because my lumps are spread out she would have to take about 1/3 of my breast anyway, so I really wouldn't be gaining anything cosmetically.  From what I understand, the survival rates for lumpectomy vs mastectomy are the same, but the local recurrence rate for a lumpectomy is higher (something like 8-12% for lumpectomy vs 2-4% for mastectomy).  To me, if I'm not gaining anything cosmetically, then why go through the added risk of recurrence and the possibility that I'd have to get a mastectomy further down the road anyway?  Not an easy decision, but it seems to make the most sense, in my case anyway.  I've read that a lot of women with the BRCA gene, like Christina Applegate for example, are deciding to have proactive double mastectomies even when only one breast is affected.  A courageous and aggressive stance, one I'm glad I don't have to agonize over, at least for now. 

In addition to the mastectomy, my surgeon will be doing a sentinel lymph node biopsy to determine if cancer has spread outside of the breast.  If the sentinel node comes back negative then the cancer is contained and there will be no need for radiation.  If the node is positive, she will have to do an axillary node dissection where several lymph nodes are removed and then sent for further testing, and I will have to undergo radiation after the chemo.  The removal of all these nodes can cause a scary condition called lymphedema which can cause all kinds of nasty life-long side effects like swelling in the arm, infections, aching, tightness, etc... but really I'm more concerned that the presence of cancer in the nodes means it's spread elsewhere in the body via the lymphatic system.  Surgery is really the key to staging which will give us the big picture as to the aggressiveness, scope, size and general bad-ass nature of the beast we're dealing with.   Luckily for me, we were able to arrange a surgery date for January 30th - not bad considering all the schedules that have to be coordinated - but still, 3 more weeks of waiting...

The Call

I got the call the afternoon of January 4th, 2012, my second day back to work.  All I can say is thank goodness Mary had planted the seed, or I would have been a complete disaster.  As it was, I could only listen in stunned silence as the radiologist confirmed that all three samples had come back positive for invasive ductal carcinoma.  There were still more results that needed to come back, blah, blah, blah, but in the meantime Mary would call me back to schedule a breast MRI and provide a list of recommended surgeons.  Surgeons?  OMG.

As it turned out, Mary did call me back.  She gave me the name of a breast surgeon and told me I was going to beat this.  Whoever created the position of breast care navigator deserves a medal.  I also remember her saying so matter of factly, "You're probably looking at a mastectomy with reconstruction, " and my mind flipping out.  I would think her job must be tough, being on the front end of the diagnosis.  You have to talk the patient off the ledge, but you don't get to see where they end up.  Once I get past my surgery, I definitely need to send her a card to thank her for her candour and guidance.

I was hustled in for an MRI on January 9th.  I would describe myself as mildly claustrophobic so I was fairly nervous about the whole procedure. The technician tried to ease my fears by describing it as more of an upright doughnut than a cylinder - you can see the picture here - but keep in mind the "doughnut" is 4-1/2 feet long so that's a pretty thick cruller.  It actually wasn't terrible, more due to the fact that I was face down and just kept my eyes closed.  If I'd been on my back there would have been a sedative required I'm sure.  What I wasn't prepared for was the noise.  With no exaggeration, it alternates between standing beside a jackhammer and an ambulance siren.  I read somewhere about people listening to music during the procedure, but that has to be total bs.  Anyway, I got through it.  I kept telling myself if I can't suffer through a 25 minute MRI then I'm not going to get very far in this whole battle.  And battle it is.  My good friend in Winnipeg sent me this awesome quote:  "I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!" ~ Dr. Seuss

The Beginning

2011 was a great year.  I took advantage of a year's maternity leave, and spent my time playing with my two boys, now ages 1 and almost 4.  As the year came closer to an end, I scheduled all my medical appointments and planned my errands so as to not have to take any time off when I started back to work.  I went to the dentist, eye doctor, got my hair cut, bought non-maternity work clothes, and booked a physical.

On December 8th, at my annual check-up, my doctor found a lump in my right breast.  She didn't think it was a cyst, but she wanted to send me for a mammogram just in case.  Having only finished breast feeding a couple months earlier, I wasn't that concerned.  I was too busy.  We celebrated G's first birthday.  Christmas was around the corner.  I had presents to buy, decorations to put up, cookies to make, and plenty of other holiday chores and parties to keep me distracted. 

I went in for the mammogram on December 20th.  (I'd had a baseline one done in November of 2009 and all was clear).  They saw the lump the doctor had discovered, plus one more.  A biopsy would be required to assess further.  I pushed it to the back of my mind, and let the kids' Christmas excitement wash over me.  Besides, who gets cancer in their thirties?

On December 30th, I went back to the radiologist for an ultrasound guided breast core biopsy.  Basically, they numb the breast with local anesthesia, insert a needle, and take out samples of tissue to be sent away for analysis.  During the biopsies of the two sites, the radiologist found a third area of concern, so I ended up having a triple biopsy.  After the procedure, the nurse/breast care navigator talked to me as she dressed the incision site.  It seems that most people vividly remember where they were and what they were doing when they first receive "the call", but I have to say it was this conversation with Mary that remains etched in my memory as the start of it all:

"I don't know if anyone has told you yet, but this looks worrisome."
"Really?!"
"Yes. I'd love to be wrong, but we see so much of this.  I just think you should be prepared."

And with that one word - worrisome - my period of denial quickly faded and the story began.