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."

 

Rant of the day: Elections

Ok, before you go all #firstworldproblems on me, just hear me out.

I've voted in like 80 different elections here in Florida this year. Ok, there's only been 3, but still.

I've lived in multiple parts of the country, and every other state seems to do it more efficiently - put lots of stuff on the ballot at the same time, most likely in November, unless you are California and you recall your governor so that Arnold Schwarzenegger can serve.

Wow, I couldn't be further off Blog topic right now. We'll get back to regularly scheduled programming tomorrow.

The end of my career

Fast forward three weeks to Monday, October 2. I booted up my work laptop from home, as I had done every Monday morning since becoming a full-time remote employee, and was greeted with an instant message from my co-worker in Michigan. "Something bad is happening," she said, and named a few of my peers that had been pulled into meetings with human resources that morning. "And they just took Mike."

I froze. Mike held the same job title as me. If he was being let go, it meant I was next.

"God, I hope I am wrong and they aren't laying off everybody," came her next message.

I went about my own business for the next twenty minutes until I saw Mike's green light appear on his instant messenger. I wrote him a quick note - "I understand today is a bad day. Got a sec to talk?" He said yes and I gave him a call.

He confirmed the bad news - that his position was eliminated effective end of year. "They shared 40 other people are being let go due to a reorganization," he said. "I don't know who they are, they just gave me a sheet of job grades and ages (a requirement to prove nondiscrimination, I guess), so you may still be safe," he shared.

But as he finished that exact sentence, an incoming call came in. "I gotta go," I said to Mike. "It's them..." He wished me luck and I clicked over to the other line to hear from a director I barely knew and an HR rep I didn't know at all that my position was being eliminated come end of the year.

I barely heard the details of my terms of severance. All I could think about was how long I had served this company, how stupid they were to get rid of someone like me with so much institutional knowledge, how I might never find another job here in Florida, at least not one that paid what I needed to earn and allowed me to still work from home full time. And how cruel could they be to do this to someone who just went through the scariest thing in her life at that point in Hurricane Irma?

Over the next three months, I went through every emotion that comes with loss. I was furious. I was in denial, thinking something was going to change and they'd see how much they needed me. At times, I was relieved to be getting out... thinking about those who had managed to keep their jobs but were somehow going to have to figure out how to do the work of 40 people that had just been let go. But mostly, I was sad to think that this chapter of my life was ending, and my time with an employer that I loved... even though I didn't always love the job... was ending.

I began applying for a few jobs half-heartedly, focusing my search on positions that allowed remote work arrangements. I also applied for a new job that had been created as a result of the reorganization with my company, but was notified on Christmas Eve that I didn't get it. The fact that they dragged the interviews out from October through November and then didn't notify me until Christmas Eve... what a holiday gift, eh? It's hard to this day to forgive how they treated me during that time.

December 29th came faster than I was ready for, and I found myself packing up my computer equipment and shipping it back to the company. And then 2018 came, and I found myself - for the first time ever - facing unemployment.

The job search was... painful. As an introvert, networking and interviews drain the heck out of me, yet that became my daily life. I thought - without work weighing me down - I might actually be able to focus on health and running (remember, I had signed up for the Princess Half Marathon last year thinking I was going to be able to get the pink coast-to-coast challenge medal, but we know that didn't work out as planned), but I didn't get anywhere closer to meeting my health goals during that time.

In all those months of searching, I did manage to earn one job offer in March - for 30% less than I was making at my former employer, and no chance of a work-from-home arrangement. I couldn't sleep that night after the offer, dreading saying "yes" but fearing that I'd be losing out on the only opportunity I'd ever have for gainful employment again. But something in my gut told me it wasn't right, and I spent all night "upping my game" so to speak. I created a personal resume website, and immediately started looking for jobs that I knew would pay me what I'm worth and give me a chance to work at home again. I went to my old employer's website, and found a posting on one of the old teams I used to work for. Sure, it wasn't a marketing job, but it had a great shot of giving me the right salary and would be a full-time remote job. I sent an email at 4:43am to an old colleague of mine asking for some inside info on the job, and applied the next day.

I then politely declined the offer I had received, butterflies floating in my stomach the entire time, worrying I was blowing my one shot for decent work. I know today that was the right choice... because within one month, I was given the offer for the job I had applied to with my former employer.

And, just like Irma, one of the scariest moments in my life had finally had some closure with a very happy ending. But two weeks after I started my new job, I received my cancer diagnosis. It seemed like I was only picked up just to be knocked flat on my face once again.

Part 2

I drove into sheets of torrential rain, and could barely see through the windshield. As if that wasn't bad enough, that horrible noise of the Emergency Broadcast System came across the radio, three screeches followed by a long tone and then the announcement of tornado warnings in multiple counties.

Tornado warnings. Unfortunately, nobody in my family ever took the time to learn the Florida counties outside of where we lived. We were clueless as to whether or not a twister was going to form right in front of our eyes, and the ferociousness of the storm we were driving through all made us silently ask ourselves the same question:

Had I evacuated my family right into their doom?

There were only two other cars on I-95 with me, and I watched them both take an immediate exit, wondering if they knew something I didn't. Even if we were to exit, where would we go? We had no idea where we could find shelter near Jacksonville.

I couldn't find a photo of the radar of the exact time we were driving up near Jacksonville, but here's what it was right before we left St. Petersburg... So I think we had been driving most of the morning in Irma's armpit there where it was clear. I was just the lucky one that got to drive right through her arm.

I was chased by another Emergency Broadcast System warning within a half hour... more tornadoes. I didn't think we were going to make it to Georgia. Ben downloaded the NOAA app to help determine if there was going to be an end to the chaos, and when. He saw that it was going to clear up for us if we could just go a little further, so I pushed through, squeezing the steering wheel so hard that my hands went numb.

As you already know, we eventually broke free of Irma. Driving across the border into Georgia brought us away from the tornados, but into a new challenge... finding gas. We knew we could probably make it most of the way to Ben's stepmom's house, but wanted to spare her the trouble of having to meet us far from her home with a spare canister full if we could. The Gas Buddy app on the phone didn't give us much to be hopeful for, except for one lone gas station about 45 minutes beyond the border that had reported gas three hours earlier. We were lucky to find it still had fuel once we arrived.

So with stopping to find bathrooms, gas, and switch off drivers, we made it to Ben's stepmother's house about ten hours later, where she had really stepped up to prepare for the arrival of "Ben's Ark" as we were calling it. She had gone to all of her neighbors' houses to ask if we could borrow cages for the cats, had gone to PetSmart to pick up disposable litter pans, and even asked a neighbor to borrow a reclining chair since my disabled grandmother can't sleep in a regular bed. She had cooked us a meal of comfort food - chicken and rice, corn on the cob, crescent rolls, some cake for dessert. I mean... just giving us a place to sleep that wasn't in the path of a category 3 hurricane would have been enough. She really went out of her way to make sure we were comfortable.

I collapsed onto the couch in her living room and called my Dad to let him know I was ok. We didn't make many phone calls while on the road, as Grams's van didn't have a cell phone charger and we needed to ensure all of our phones had power in order to use GPS to get us to South Carolina and to help us find gas along the way.

I couldn't hold it together on the phone with him. I cried, although it wouldn't have been the first time that week. It certainly wouldn't be the last.

Although we could breathe a bit better now that we were safe, our minds drifted to how things were faring back home. We have a Ring video doorbell, so Ben used his phone to pull up the app, and we were surprised to see it was working, which meant we still had power and internet. We watched the storm view from our front porch for a few minutes, surprised to see palm trees still standing but blowing a bit violently in the wind. We crossed our fingers and went to bed, hopeful we'd be able to peek at a house still standing the next morning.

But the Ring app wasn't working the following morning, so we couldn't be certain what had happened overnight. And there was no news coming out of my grandmother's and mom's neighborhood, which was at the biggest risk of flooding. So we stayed with Ben's stepmom on Monday to allow Irma to pass through, but knew we needed to get back on the road heading home as soon as possible to assess any damage that had been done to our homes.

A few of our neighbors had returned home Monday night, and gave us the good news - the roads were open and it seemed that Irma had shifted and spared our city as a whole. Our house looked like it had made it through unscathed. So Tuesday, we hit the road as early as we could.

The drive home was even harder than the drive there, though. Although we had no traffic on our way out of Florida, we had to fight our way back in, facing a 13-hour drive in a hot car instead of what should have been an 8-hour drive. For some reason, Georgia shut down every exit on route 95, so there were no bathroom, gas, or food stops. How's that for southern hospitality?

To make matters worse, my grandmother kept complaining throughout the trip "Nobody listens to me, I knew nothing would happen, we never should have left..." But how can you really know nothing is going to happen?

And I'll reiterate - for those who are newcomers here - I don't wish to be criticized for not leaving sooner. I think we made the best possible decision with the hand we were dealt, and in the end, everything worked out just fine. Our homes - even Grams's and Mom's on the water - were just fine. Our pets were fine. We were fine.

I don't know how we got to be so damn lucky... this time. As we're sitting in the aftermath of Hurricane Florence that was so devastating for so many, I'm not fooling myself that Irma represents the last of my battles with hurricanes. When will it be my day to lose everything?

On Running for my Life

I suppose I'll start where I left off with Hurricane Irma. You might want to head back to this post from last year and re-read everything from September to refresh yourselves on my particular headspace in the days leading up to the hurricane, then come back here for the end of that chapter of my story.

So the last thing I wrote before the storm was that we received an update on Friday at 5pm that Irma was going to directly hit us. There were no changes to the forecast through Saturday, so we finished up making preparations at my mother's house (if you recall, my mother and grandmother live right on the bay and were under mandatory evacuation orders), brought her and my grandmother and all of their pets to our house, and then finished making our own house ready for the storm.

As the hours ticked by, we watched more and more of our neighbors leave. Many of our immediate neighbors in some of the newer construction households were staying, even with the threat of a direct hit. I guess it showed a lot of confidence in our builder, but Ben and I were skeptical they had strapped the roof down as planned. And even if our house was the fortress we were hoping it was, could it really withstand someone else's roof blowing into it? 

I hadn't really slept at all that week. And that Saturday evening... well, I had joked it was like going to bed on Christmas Eve... because you knew something big was coming. We all woke up at 6am that Sunday morning, although not sure if "woke up" is the right phrase to use if you haven't been sleeping. We were operating on pure adrenaline at that point.

A quick look at the news made me want to vomit. No change to Irma's path. Direct hit. Category 3. This video was shared on my husband's Facebook page. SO helpful.

Basically, this means St. Petersburg was over. And we had learned - in the middle of the night - the last of our neighbors, even the immediate neighbors I mentioned earlier, had skipped town.

My biggest fear was not about whether my mother, husband, or I could handle sticking around for the storm... it was whether my 90-year-old grandmother could. We knew that once the storm came, we wouldn't be able to get her medical help if she needed it. And depending on how bad the aftermath was, could we really care for her without power? Would it be too late to get her to an equipped shelter after the storm?

We quickly discussed the options remaining to us.

Option 1. Since my mom and grandmother lived in a mandatory evacuation zone, they were eligible to go to a special needs/pet-friendly shelter. The shelter would be able to get any medical help if needed. My husband hopped on his scooter (at 6:30 in the morning, mind you) to go scope the shelter out and get info about what they needed to do, and find out if we would be able to join them. 

The answer was no. We'd be split up. If communications went down, I would have no idea how they fared. And it killed me to send my mom and grams to a shelter with no comfortable bedding and just a cooler of food. Also, their pets would be taken from them and kept in a separate area. Now, my grams loves her dog, probably more than me and my mom. There was nothing comforting to me about this arrangement, other than that she'd have the basic needs to keep her alive. 

Imagining my mother and grandmother in the shelter with no way of communicating with us still chokes me up. I just can't.

Option 2. Run like hell to South Carolina, where Ben's stepmother lived. It was the nearest location of family members outside the path of Hurricane Irma (but - mind you - still in the path of Tropical Storm Irma). Because it was Hurricane Day, and there was no fuel to be found, the roads were clear (as relayed to us by our neighbors that had left earlier that morning). We did the mental math to determine if we could make it to SC based on the fuel that was in my Grams's minivan, and the gas we had set aside for our generator should the power go out during the storm.  

We decided on option 2, although Grams under protest. 

The next hour was a frenzy of literally throwing cats into carriers (we have 5 between my family, my mom, and my grams), packing clothes, and jumping into the car, my Grams complaining the whole time about sitting down to have a nice breakfast before we left. There's no time, Grams. We HAVE to go.

We were on the road by 9:00 am, heading east. We thought we had beat the storm, and figured once we were past Orlando, we'd be safe. After all, Irma was heading West, right? We traded off driving, taking two-hour shifts each with Ben driving first, then my mom. I took over near Jacksonville.

That's when we learned we may have waited too long to leave.

The last year

Let me summarize today what's been going on since 2017. I'll extrapolate about each of these awesomely terrible things in a future post.

Irma was pretty traumatic for me. The days leading up to it were absolutely frightening, and our last minute escape from Florida was particularly harrowing. Once things settled down in the days following, even though I knew how lucky we had all been, I just couldn't shake the "End of Days" feeling I had. With Hurricane Florence hanging out in the Carolinas this week, I'm feeling that general uneasiness again, even though I'm well outside the path. I just worry for all those who are in the path and hope they can claim the same good fortune I did after Irma.

But I didn't have good fortune after Irma. Just three weeks after the storm, a new storm brewed in my life. For the first time ever, I was facing unemployment. An employer I have served on and off again (by my own choice) in the last ten years had decided my services were no longer needed, and I'd be jobless come 2018. It was a crippling blow to my psyche - even though I didn't love the job I was doing, I loved the comforts it afforded me - the ability to work from home, something I had gotten used to and enjoyed as an introvert over the last three years, and a salary that allowed me to indulge my Disney addictions. I didn't like my job prospects for finding the same kind of work here in Florida.

Spoiler alert... I did eventually find new work. And I believed my luck was turning. But then, two weeks after I started my new job, I was diagnosed with stage 2 breast cancer.



Oh, there's been running, too. St. Pete Run Fest... well, it happened and I "officially" got my sub-2 run. The Princess Run also happened. So more to come on those.

Thinking about coming back

It's the one year anniversary of Irma Eve.

The beginning of the end. I didn't know it at this time last year, but life was not about to cut me some slack after Irma.

So yes. I'm thinking about writing again. Sharing all the shit that's gone down in less than a 12 month period.

Except I don't own my domain name anymore. No more twitter. No more email. No way to really get the word out that I still exist. And nobody is really listening otherwise.

I guess this would just be... therapeutic... for me.