Chemotherapy

With my first surgery complete, and the discovery that my lymph nodes were clear, my oncologist was finally able to give my cancer stage: 2A, which based on size of the lump and the fact that zero lymph nodes were impacted. It's conearly-stagely stage cancer, which is a relief, but wasn't going to exclude me from having to undergo chemotherapy. It's the only treatment available for triple-negative breast cancer, and starting chemo sooner rather than later gives you the best shot of achieving good outcomes.

I don't really know what that means for me, exactly. Given that my lymph nodes were clear and that I had a mastectomy, I'm not sure what they are expecting to find at the end of treatment. I'm still going to have to keep my fingers crossed that I won't have a recurrence - I understand the five-year mark is a good goal to reach, as it will be unlikely I will have a recurrence if it doesn't happen within five years. So... fingers crossed, I guess.

My oncologist described the chemotherapy regimen I'd be undertaking - eight rounds, spaced out every two weeks. The first four treatments would include adriamycin and cyclophosphamide, followed by four rounds of taxol. He also described the common side effects and when I could expect them:

1. Hair loss would begin within the first few days of treatment. I could expect to be completely bald within two to three weeks. 
2. Nausea and vomiting would be the worst two to three days after treatment. 
3. Constipation and fatigue would be ongoing.
4. Some patients also see weakening of the heart, called cardiomyopathy. 
5. Compromised immune system: Chemo doesn't differentiate between cancer cells and healthy cells, and knocks out your white blood cells, which are key in fighting infections.

So I would have to stay away from notoriously "germy" places like:

• Gyms
• Buffets
• Disney World

Guys, you know how much I love Disney, right? My annual pass expired in August - it's the first time I haven't renewed it since we moved down to Florida. And the months of October, November, and December are extra magical as Disney preps for the holidays, so I'm sad to be missing out.

I had also been planning on doing a Disney Halloween-themed cruise to Bermuda with some friends and family in October. Disney Cruises are my absolute favorite vacation, and I had been planning this particular trip with the family since June of 2017. Since the trip was planned for the time right in the middle of chemotherapy, I had to back out of it. Glad the rest of the family still went, though. Wouldn't want my cancer to get in the way of their fun. 

Anyway, as much as the side effects all sound like a blast, I forced myself to look forward to treatment. I understood time was of the essence. The only problem was that I had to be completely healed from my surgery before starting since chemo could interfere with the healing process and put me at increased risk of infection. 

So my oncologist and I set a tentative start date for chemo for August 16, about one month after surgery, to allow time for healing. My husband arranged to be home from work that week so that he could go to that appointment with me... and when the time came, we bravely marched over to the doctor's office together.

Only to have him take a look at my surgical scar and determine I wasn't ready to begin. He postponed treatment one more week, which was unfortunate because Ben would be back on the road for work. And again, I knew starting sooner rather than later was important.

But now that I know how much the side effects kick my butt, I guess I'm grateful that I didn't start on the 16th and got to enjoy my 38th birthday on August 20th pretending to be normal. 

Scary AF

I've been feeling very fatigued lately from chemotherapy. It's even a chore to think about writing. Where did I leave off from two weeks ago? Oh yeah...

Going through a major surgery is scary AF.

I had only ever been operated on twice. I had a tonsillectomy when I was three years old, and
broke my arm when I was six. I suppose I could thank my lucky stars this hasn't been a regular occurrence in my adult life, but forgive me if I'm not feeling in a particularly grateful mood.

There were three thoughts about my surgery that brought tears to my eyes when nobody was looking:

1. Something is going to go wrong during surgery and I'm not going to make it.
2. I AM going to make it out of surgery, only to find that the cancer has spread and my days are numbered. 
3. Even if I do make it out of surgery - and they don't find any contaminated lymph nodes - I still have to go through four months of chemotherapy. Plus I'll never be a whole person again.

 

My husband and I tried to do as many fun things as we could in order to keep my mind off of it. We used up some casino credits for a really nice dinner and some fun at the Hard Rock Casino in Tampa the weekend before surgery. And the night before, I had suggested a Marvel movie marathon - both Ant-Man and The Avengers: Infinity War were in the theaters still, and although we had already seen both of them, I thought it would be fun to stay up all night watching them again. I forgot that we're getting old, though, and only made it through one movie (Ant-Man) before we decided to go home and go to sleep.

My report time to the hospital the next day was 8am. There were three rounds of tears for me that morning - once, right after the alarm woke me and I recalled what day it was. Then again at the hospital as the nurse was prepping me for surgery. My husband and mother were present and it was nice to have the company, but I really didn't want to break down in front of them. I cried a third time after I was wheeled to the pre-op area, after saying goodbye to my husband and mother. Luckily, the nurse in the pre-op area had a really helpful sense of humor. I was grateful for the drugs he gave me to relax me a bit. I remember being wheeled to the surgery room around noon - small, white, crowded. A few of the nurses introduced themselves to me, but that was the last thing I remember before falling asleep.

The next thing I knew, I heard "Wake up, Nicole!" from an unfamiliar voice and some murmuring about getting my husband from the waiting area. I've said it before, but I'll say it again - anesthesia is a wonderful, wonderful thing. The whole operation was a little over six hours and then they kept me overnight in observation. I didn't sleep much, as nurses kept waking me up to check on me, offer painkillers, and other fussing around. I almost didn't want to go home the next day, but they don't usually keep you overnight at the hospital anymore, so I was lucky to at least get one night. Yes, a mastectomy is considered an outpatient procedure these days. Isn't that crazy? Stupid insurance. That's a story for another day I guess.

The good news was that I learned that twelve lymph nodes were taken during surgery, and all of them were free and clear of cancer.

The bad news? Surgery would actually be the easiest part of treating my cancer.

Garmin Piece of Junk

The last time I ran was the Disney Princess Half Marathon in February. That would also be the last time I wore my Garmin Forerunner 230, the "trusty" running watch I got for myself shortly after I decided to take up heart rate training in 2015.

Man, has the watch been a disappointment this year. The day before the Princess 10k, I put my watch on and the little band that holds the excess watch strap broke. Luckily, I was able to improvise using a Disney Annual Passholder 2014 band decoration for the race.

But then I quit running after that race. I'm not really sure if I'll ever be able to take it up again because I'm just so freaking uncomfortable right now. I have tissue expanders in the place where my left breast used to be. My plastic surgeon and breast surgeon operated on me the same day back in July - the whole procedure, which I refer to as "demolition" and "reconstruction," took about six hours. Apparently, I had to be intubated and was given a catheter. Anesthesia is a wonderful, wonderful thing.

So since July, I've had the tissue expanders in place, and have had to go for a few "fillings." This will create space for the plastic surgeon to give me an implant after I'm finished with chemotherapy. You can imagine this is not a very "comfortable" process.

I don't know if running will ever be a part of my life again. The TE is extremely awkward, and I just generally don't feel good most days while on chemotherapy, so running is right out. I also need to avoid gyms and other places that are germ breeding grounds since my immune system is compromised.

While I'll be able to go back to the gym after chemotherapy is over, I doubt I'm going to feel any more comfortable and excited about running after having an implant.

Meanwhile, I can't just sit around and be inactive, even during this trying experience that is going through chemotherapy. So I've been trying to get at least a walk in daily, and I was reminded yesterday that my Garmin could keep track of my step count. I thought it might be best for me to try to get 10k steps in every day.

So I charged up my watch, put it on, and then this happened:

Cheap watch strap snapped right in half. You can also see the Disney Passholder charm I was using to hold it together before this happened. 

I just can't catch a break. Going to see if I can buy a replacement watch strap now.

Plan of attack

The days following my cancer diagnosis were some of the longest, hardest days I had to endure (and that includes the days I've experienced chemotherapy). I felt lost and overwhelmed, torn between the three miserable choices I had for treatment, knowing that making the wrong decision would have an impact on the long and fulfilling life I've envisioned for myself. I tried to read as much as I could about triple negative breast cancer on the internet to help guide me in the right direction, but it was tough reading. The outlook is not nearly as good compared to other types of cancers.

I thought I would wait for the results of my genetic test to come back before making a decision on surgery and treatment, as a positive result would encourage me to think more strongly about having a double mastectomy, but my insurance company denied the testing procedure. Something about my having Jewish ancestry makes the procedure unnecessary because I'm already at high risk of developing breast cancer (well, obviously, because I already have cancer). I'd just like to say that whoever made the decision that genetic testing is unnecessary obviously hasn't been faced with having to make a choice between keeping one or both of their boobs. Although the genetic testing company would do the test eventually anyway at no expense to me (they want the data, of course), it just resulted in additional delays, and it really felt like every second I waited to make a decision on treatment was acting against me.

Meanwhile, I had to start making phone calls to friends and family about my diagnosis. The first was to my mother, of course. Having been through this herself when she was just 32 years old, she's been my best supporter and ally. Of course, she's also been very adamant that I should follow in her exact footsteps as she's about to turn 60 this year and has had no recurrence. Mastectomy, chemo, radiation, two years of a crazy vitamin regimen... on the one hand, I wanted to believe that there's been better breakthroughs in cancer research in 28 years that I wouldn't have to do exactly what she did, but on the other hand I was grateful that I have a role model that has lived through this to give me hope that I'm going to be just fine.

But every call after that was much harder. It's just a depressing conversation... I felt like I was ruining everybody's day, even though I tried to sound as optimistic as possible by reminding people that I've got both my mother and grandmother to look up to as cancer survivors all these years later.

There was one call I almost didn't make - the one to my father. He lost his second wife, my stepmother, to cancer in 2016, right after I ran the Dark Side Challenge which was the race that prompted me to start this blog. She was only 60 years old, it all felt very sudden and unexpected, and it has left my father in a bad place ever since. He wakes up every day wondering what bad news will befall our family, and I knew his thoughts would immediately jump to the death of my stepmother instead of the long, healthy life my own mother has had after cancer. But I knew I needed the support of my entire family behind me. Maybe it was selfish to tell him. I know he worries every day about me. But if he didn't know... he wouldn't understand why I wasn't feeling well most days, or why I wasn't traveling anywhere, or why maybe I wouldn't be up for having him down for a visit, or why I'd be bald. I can't keep all of that a secret, right?

One week after my diagnosis, I did receive some good news. Remember that enlarged lymph node my surgeon did a biopsy on? It came back clear. It didn't necessarily rule out that cancer had spread, but was still somewhat comforting. It became clear to me that I could eliminate one of my choices from surgery - double mastectomy. There was no reason at that time to remove a healthy breast and have a more complex surgery that could possibly delay chemotherapy. I can always opt to have that surgery down the road if I want to.

So that left me with either pursuing what I've read as the best option according to the internet (neoadjuvant chemotherapy followed by lumpectomy) or following in the footsteps of living proof of something that worked in my own family (mastectomy followed by chemotherapy).

And on July 17th, I said goodbye forever to my left breast and what will hopefully be goodbye forever to cancer.

My mother took this photo as they were wheeling me away to surgery. I thought it was fairly ridiculous that she wanted to capture that moment, but I have to say I like that I don't look too bent out of shape, all things considering.

Next steps

The thing with cancer is that nobody tells you what to do.

When I went in to see my surgeon the day I got the results of my biopsy via email, I expected her to lay out the exact plan of attack. I wanted her to tell me exactly what to do for my best chance of survival and give me my action steps.

But she didn't do that. Instead, she gave me "options." Leaving me to make decisions about extending my life that frankly I'm ill-equipped to make.

What the hell do I know about cancer?

The only thing that was made clear to me was that at some point, I was going to need to undergo chemotherapy. The biopsy showed a triple negative cancer - meaning hormones weren't driving it, and tamoxifen is not an option. If you google triple negative breast cancer, you'll find some scary shit. It's particularly gnarly and aggressive. So chemo was a must.

But how and when chemo would happen would be dependent on how I wanted to remove the tumor. Here were my options as presented to me by my surgeon:

Option 1: Double mastectomy (I remember my reaction: "You want to take both of them???") - given the diagnosis and higher chance of recurrence, I could choose to have both breasts removed at the same time. Pros: getting all surgeries done at the same time - but there's no definitive evidence this prevents recurrence. So why do people do it? Peace of mind maybe? Cons: obviously, having 0.0 boobs is not ideal. Plus you have to wait until you are fully healed to begin chemotherapy, which is of the utmost importance. If anything goes awry with the surgery (infection at the surgical sites), chemo would need to be delayed which is not good.

Option 2: Single mastectomy - Just remove the broken boob. Pros and cons are similar to having a double mastectomy, except you are only losing one breast and the surgery is less complex so hopefully you'd heal sooner with no problems and begin chemotherapy asap. This is what my mother had done so many years ago, and was the option she was pushing for me to do.

Option 3: Neoadjuvant chemotherapy with a lumpectomy to happen at the end of treatment - There would be a chance to save the broken boob by going this route. I google'd the hell out of triple negative cancer and it seemed this was a popular approach given how important chemotherapy is in the treatment of this type of cancer. With this approach, chemotherapy is given before surgery. The tumor actually shrinks as a result of chemo, making removal a little bit easier. Pros: Starting chemotherapy sooner results in a better prognosis, and you have visible confirmation treatment is working because your tumor shrinks. Plus, who wouldn't want to save their boob? Cons: You're living with an intact tumor in your body for a longer period of time. You also won't know your cancer staging and whether or not cancer has spread to the lymph nodes until surgery actually occurs. You also risk not getting cancer-free surgical margins with a lumpectomy.

So I couldn't really take any next steps until I made a decision about surgery. My surgeon couldn't give me any information about staging - that would happen after surgery once they removed some lymph nodes to see if the cancer had spread. She did share that they could see an enlarged lymph node on my ultrasound and suggested performing a biopsy that day on that particular lymph node to check. If positive, we'd know sooner rather than later if it had spread. If negative, we'd still be unclear on staging as they'd have to check all of the "sentinel lymph nodes" as they are called to be sure it hadn't spread.

Of course I said yes, even though biopsies suck. I also provided some blood for genetic testing as it had been a few years since my mother had completed testing and maybe there were some new findings since then. A positive result could help me lean towards double mastectomy. But overall, I left her office feeling overwhelmed by the fact I really had no clear plan for treatment.

She did refer me to an oncologist, at least, whom I met with later that week. He - just like my surgeon - wouldn't tell me what to do, but suggested if I were his wife/daughter/sister/mother, he'd encourage a double mastectomy. But, as I understand it, oncologists are scared shitless of triple negative cancers so I think they all lean towards the most aggressive approaches.

It took two weeks to make an official plan for treatment - and it was the longest two weeks of my life.

Bad things happen in threes

So let's recap - last September, I feared it was the "End of Days" with Hurricane Irma pounding down on my city in Florida. In October, I feared for my ability to continue being a productive member of society after I learned my job was being eliminated. Scary stuff, eh? But if you've been following along, you know each of those scenarios ended up being a-ok in the end. The hurricane did 0.0 damage to me and my family, and I was offered employment again in April with the company that laid me off, with a start date of mid-June, giving me some ample time to rest and recharge from all of the networking and interviewing I did to desperately seek new employment. 

And then May 22nd of this year came and that's when I felt the lump. And I knew. Life was not about to cut me some slack.

I was in the shower and had an itch on my upper left chest, so I scratched it. There was a firmness that felt unfamiliar to me. I quickly felt around my upper right chest to confirm that something was off, and I could feel the blood drain from my face. 

Breast cancer. It's a family curse. My mother was the first to be diagnosed when she was just 32 years old. I was only 11 at the time, and remember very little about the trials and tribulations she had to go through: being newly divorced, "single-momming" it up, while running her own business and going through multiple surgeries, chemotherapy, and radiation. Not long after she was diagnosed, my Grams in her 60's also received the cancer sentence, although hers was caught much earlier than my mother's and she did not have to go through as much in the way of treatment. 

I had always assumed in my 20's that the same ill fate would befall me in my 30's. It's one of the reasons I shaved my head during my stint on Semester at Sea - I figured knowing what I looked like bald ahead of time would make it less traumatic in the event I would ever need to go through chemotherapy. 

From Vietnam

I had my first mammogram at age 32, the same age my mother was when she was diagnosed, and it came back clear. Shortly after that, Angelina Jolie made headlines for having a double mastectomy because she tested positive for cancer genes. I thought that surely I too had the genes, and should consider following in Angelina's footsteps. I went to see a genetic counselor, who encouraged me to talk to my mother about having genetic testing completed. I would have done it myself, but the counselor suggested it was preferred for the actual cancer survivor to have the testing done first to determine if it is even necessary for the relatives. 

My mother, who thought I was nuts to be considering having a prophylactic double mastectomy, volunteered to have the genetic tests completed, and we were both relieved at the time to find her results came back negative. The genetic counselor agreed there was no reason for me to consider testing, and I took it a step further and made the decision to save myself some money and forget going back for any more mammograms. I suppose now that may have been a mistake. 

Anyway, on that day I found my lump, I didn't sleep much. I had an appointment with my primary care doctor on the schedule within two weeks, so I decided to wait it out to get a referral for a mammogram. She not only referred me out for a mammogram, but also immediately put me in touch with a breast care surgeon in our area. 

I needed multiple appointments to get my diagnosis - the surgeon performed an ultrasound, sent me out for my mammo and MRI, then did a biopsy on the lump. It was tough juggling starting my brand new job in June with all of the doctor's appointments I needed just to get a diagnosis, but I scheduled appointments at lunchtime and at the end of the day when I could, and just explained to my boss that some of these things could not wait. She was understanding and supportive, but man... being the "needy" one is not the position you want to be in when you start working for someone new. 

And then I got an email from Quest Diagnostics on June 25th at 2pm, 2 hours before I was to meet up with my surgeon again. Yup, email delivered the news. The results of my biopsy were in. 

Invasive Ductal Carcinoma. Grade 3. Triple Negative. A bunch of things I didn't fully understand, except for the word "carcinoma."

And thus begun my cancer "fight."