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."

 

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.

Happy birthday, blog

Just stopping in to wish the blog a happy 2nd birthday. Look at how far we've come in two years!!

That's sarcasm, people. For all of this "learning" and "discovery" I've done - not just in the last two years, but since I started half marathoning five years ago - I've gone pretty far fucking backward. I've really just traded one set of unhealthy signals I had five years ago for another much worse set today.

Yeah, remember this? I don't think I'm even moving pebbles anymore. And my writing has kinda gone to shit. 

And I am just so goddamn tired of getting advice from so-called experts who know nothing, Jon Snow. And speaking of Jon Snow, maybe that's part of my problem. Why is all of this expert advice I'm getting coming from dudes? I really gotta rethink my "resources" page because none of these resources have actually helped me get anywhere close to my goals and maybe it's because it's all "expertly" crafted by men using research on other men to the benefit of future men and NOT ME.

I probably just offended 2.53% of my readership. Sorry. I know at least my husband will forgive me. Bear with me for a sec, though, this is not a gender issue.

Here's the truth. I've been steered wrong by female docs too.  Female coaches with specific expertise in my problems charge too much. Holistic health professionals in my area that accept my insurance are hard enough to find, and females are nonexistent, but at this point I'm thinking none of these "professionals" really know what they're doing anyway and they're all just throwing spaghetti. Or zoodles, and those are NEVER going to stick.  

And every success story I've ever read online must be totally fake because how is it that I can do what they're doing and not improve? They're either lying to me or not giving me the whole story. Don't give me that "unique snowflakes" BS, we're not THAT unique. Otherwise, what's the point of even doing research and sharing stories? I should just shut this down right now, right?

The thing that is working for me right now is chemical and short term. Why didn't anybody tell me about this option years ago? Why did I have to fight with this for so long and only have this offered to me after I went asking for something else New Doc couldn't actually prescribe me?

I don't know. Maybe I did have the right answers in my younger days. I don't have time to keep getting it wrong here, people. Hurricane Ethel could take this all away from me tomorrow. No, there's not actually a Hurricane Ethel right now, but while we're on the subject, let's start a petition to change the way they name hurricanes because I hate having to tell people I've been beaten up by an Irene, Sandy, and now an Irma. How about Hurricane Vader? Hurricane Palpatine? Even Hurricane Death Star would work. Seriously, you could get enough villains out of the Star Wars universe to get through a few hurricane seasons just fine.

When exercise becomes unhealthy Part 2

I was investigating a dip in traffic to the blog this week and discovered I inadvertently changed my privacy settings. Way to go, Nicole. It was a particularly bonehead thing to do given I'm still trying to rebuild an audience after killing RttDS last January. So if you're here, I am very grateful you're still sticking with me. Thanks.

Yesterday, I introduced the moment I started seeking new answers to problems that had been building throughout my entire life. I had been juggling a restrict/binge/purge cycle for years, and prior to 2012, I had tried unsuccessfully to end this through therapy. I think part of the problem was that I wasn't willing to stop the intense exercise - I was only focused on the "binge" portion of my problem. Here are some things that were happening to me that should have clued me in sooner that I was overdoing it:

1. Loss of menstrual cycle: I didn't start journaling until about 2010, so I have fuzzy timelines on this, but I had been taking hormonal birth control up until 2009. I stopped because I figured taking hormones for 10+ years was a bad idea. Shortly after I stopped the BCP, I stopped getting my cycle regularly. I likely would have lost my cycle sooner - BCP was artificially keeping it going. As I shared in this post, it came back late 2015 after I stopped the running madness.
2. Compromised immune system: Like I said yesterday, I was sick all of the time in 2012. It was particularly bad that year because I faced lots of stressful events then, and wasn't doing myself any favors adding in the extreme exercise. But even in the years following, I'd find myself feeling run down frequently. Since 2015, I've had less of a challenge fighting off infection.
3. Night sweats: TMI? About once a month, I'd wake up in the middle of the night absolutely drenched. It could be the middle of the winter, it didn't matter. This was the absolute WORST because a. Gross and b. There was no chance of me going back to sleep when this happened. I never tied the hormonal chaos my body was going through back to this, but given that it hasn't happened in a few years, I think it's safe to say the intense exercise was connected.
4. Compulsion: While not a physical symptom per se, I feel like it's important to address here. Exercise was *the* thing my life revolved around. All social engagements were prioritized around my training schedule. I was even late to my bridal shower because I needed to hit the gym the morning of, and my husband wasn't ready to go to the gym with me on time, but I just would not cut my run short. It's no longer the end of the world if I miss a workout these days.
5. Lack of improvement: Remember I said yesterday one of those overtraining signals is still hanging around? This is the one. The thing is I DID get faster and I DID lose weight when I began half marathon training, even though some of the other problems above I had already been experiencing for a few years. And things kinda evened out for me in 2012... and then started to get worse, and haven't improved since. 

Things are supposed to be getting better now, damn it.

BONUS SYMPTOM: Anxiety. I don't know whether to include this here or not. It COULD be related. I can't ignore the fact that it certainly peaked in 2012 while I was training for two half marathons, but there was a lot of other stuff going on. I've experienced it less intensely over the last few years, but I think there are other things in my life besides my running and eating habits that are contributing to that as well. 

I've noticed my anxiety has increased since I started the meds. I confirmed with New Doc this week that bupropion acts like an amphetamine. "That can be a bit uncomfortable for someone with anxiety," he says. Gee, doc, ya think?! He's changing my script, although the lower dose has more of an immediate release. We'll see how that goes.

Anyway, I share the above in the hopes that it can help you or someone you know to figure out if you have an unhealthy relationship with exercise. There are plenty of other ways your body could be yelling at you to slow down, but the biggest thing is that you've gotta be in a place where you are willing to listen. Something about living through a natural disaster like Hurricane Sandy finally got me to listen and start looking for answers. Gotta live our best lives now because tomorrow is not promised.

When exercise becomes unhealthy Part I

Hurricane Harvey had me thinking a lot about my experience during Hurricane Sandy in 2012.

2012 was kind of a crazy year for me. I had started a new job in November, 2011, so I was still learning the ropes in 2012. I ran my first (and still my fastest) half marathon in April. I was planning a wedding, got married in June. I then left that job I had started in 2011 for another one right after the wedding. Oh, I ran my second half marathon in September. And then I went on my honeymoon a week later. While I was away, my grandmother died, which was pretty hard on my dad's side of the family. I began another serious job search. So... yeah. A lot happened.

Right before Hurricane Sandy, I was hit with an infection. I had a nasty abscess under my arm - I used to get these frequently in college, but hadn't had one in about ten years. I had attributed the abscesses to being overweight, and figured they were a thing of the past since I had dropped about 20 lbs and kept it off. So I was very surprised to see one return. Maybe it had nothing to do with weight, and everything to do with stress...

In any case, I went to see a doctor, who suspected it might be MRSA and gave me a powerful antibiotic to fight it. I didn't get better, though... I got worse. For two and a half weeks, I suffered, and woke up one final morning covered in hives. Turns out I was allergic to the antibiotic they gave me.

Between that experience and a glimpse into the "End of Days" that was Sandy, I knew something had to change. I began to question what my existence had become.

1. Why was I getting sick all of the time? Even before the MRSA problem, I was always frequently feeling run down.
2. Why was I job hopping all of the time? Before 2013, I hadn't held the same job in a calendar year since 2005. Anxiety wasn't the whole reason for that, but definitely a major part of it from 2011-2013... coincidentally around the time I began training for half marathons.
3. And why could I show so much control and delayed gratification in so many facets of my life - exercise, finances, volunteering - but could NOT get my eating disorder under control?

So I can pinpoint that late 2012, right after Sandy hit, is when I started to look into unconventional approaches to solving my issues. Because "diet and exercise" weren't really getting me anywhere I wanted to go. My initial search lead me to read Wheat Belly by William Davis, and I started my first public blog in 2013 about my experience trying to kick wheat and gluten grains from my diet. Spoiler alert: it failed.

Now, what's the most logical next step to take when one has trouble restricting one item from his or her diet? Why, find an even MORE restrictive diet, of course! In 2014, I found Paleo and started reading things like Mark's Daily Apple and It Starts with Food (aka the Whole30 or Whole 9 Life). Yet what drew me to these resources was not so much the attention they gave to food, although food featured prominently... it was the information they provided on living a healthy lifestyle.

And that nudged me towards the fact that I needed to quit running cold turkey.

Which is why I started this blog in 2015. Because I wanted to stop running... except I didn't want to do it until after I got a sub 2 half marathon. So here I am, still running, and maybe that's a dumb thing to do.

But maybe it's not.

Because it's easy for me to look back NOW at all of the signals my body was giving me in 2012 (well... from 2009 to 2015) to stop running so HARD, start eating more, and maybe take a break once in a while.

And I'm not getting a single one of those signals today.

Ok, I lied. One is still kinda hanging around.

And I'm not 100% sure what to do about that. 

Tomorrow, I'll share what those signals were in the event you are experiencing any of them... so that maybe you can recognize if you might be in the run/eat/repeat cycle, and get some help getting out of it sooner rather than later.

Inner Workings

So I'm one week into a new regimen of taking two types of medication - a low dose of an anti-seizure med and an antidepressant - to help end my eating disorder.

What if I told you.... I take both pills?

For the last ten years or so, I've really been strongly against taking any type of medication, even avoiding aspirin for headaches if the pain wasn't unbearable. Even last year, I was hesitant to start up thyroid medication when I learned my thyroid was working sub-optimally, but gave it a go because I thought that might be playing a role in my binging, and the thyroid meds didn't contain much in the way of chemicals (just naturally desiccated pig thyroid gland). But after a year of taking higher and higher doses of WP Thyroid until I hit the max and never seeing better results, I decided to wean myself off of those meds, and I took my last 1/2 grain of WP Thyroid this morning.

So I didn't take the decision to go hunting for help from conventional medicine lightly, but when it comes to binge eating or bulimia or whatever the hell plagues me, the pendulum swings just seem to be getting wilder and wilder in my life. One month, I'm "cured." The next, I'm so far off the rails, it's scary.

I want equilibrium. I want balance. And then I'll achieve my goals, like finally getting my sub 2 half marathon.

And um, guys... the meds are kinda working.

Let me explain to you the inner workings of my brain before last week:

Inner Pig: "Oreos."
Nicole: "Um. We don't eat that stuff anymore."
IP: "Oreos."
Nicole: "We're kinda busy right now."
IP: "Oreos."
Nicole: "I don't really want Oreos."
IP: "Oreos."
Nicole: "I have to run tomorrow, and I can't be sick and bloated for that."
IP: "WE'RE GETTING GODDAMN OREOS."
Nicole: "Eep. Ok"

That's literally how it works for me, and as I understand it, for most with binge eating disorder and other types of addictions. There's an internal argument, a power struggle that takes place until my rational, logical self takes a back seat and something else takes over for a while until I find myself knee-deep in a pile of oreos, wondering how this happened and feeling guilty as hell, and the only thing that is gonna make me feel better is running the junk out of my system, only my body is wearing down and I can't run like that anymore.

And here's how it's worked since last Friday, like almost immediately:

IP: "Or-"
Nicole: "SHUT THE FUCK UP."

Who's in control? Me.

Also, the meds give me a potty mouth.

And that's it. I eat three normal meals, mostly things I've prepared myself from fresh meats and veggies, and have an extra healthy snack if I have worked out, which has been most days this week. I also have dinner at the table with my husband - it's worked out really nicely that he's not traveling this week for work to get me into the habit of sitting at the table to have meals.

And that's exactly what I'm looking for... building good HABITS around food so that in a few months time, I can eliminate the meds and be a normal human eater. I also believe that - because I won't be eating the things that suppress thyroid function like gluten and dairy - I'll be helping my body out in that respect, too.

I've got hope again. Haven't seen you in a few months, friend. Glad to have you back.

Battle Lost

After a two-week fight with my doctor, insurance company, and pharmacist, I am relieved to share that the battle is over.

Had to go full-on bitch mode over the last two weeks. I really hate doing that.

And... I lost. I'm just tired of fighting. I don't know who to be mad at today, though. My doctor for not helping me achieve a more immediate resolution and not having my back with my insurance company? Or my insurance company, who somehow gets a say in which drugs I get to take because they don't want to pay for the good stuff?

No. I should be mad at the drug company. How is it they get to advertise directly to me that they have the "solution"? Shouldn't my doctor be the one to tell me what to take based on my symptoms? And why is the drug company allowed to charge $325 per month for said "solution"? It's not like I have an EpiPen level condition here, but it still seems unfair that I have to choose between going bankrupt or prolonging my suffering.

I can't really afford $325 per month, but I also now know after all these years that I can't solve my eating disorder without support. So I went with the doctor-suggested alternative, which is a combination of an anti-seizure medication (last I checked, I didn't have epilepsy, so this makes sense) and an antidepressant, for a grand total of $35 per month out of my pocket. This cocktail comes with a long list of possible side effects (I must apologize in advance if you notice any changes in the quality of my writing over the next month) and a small probability of actually solving my problem. Also, no more Friday night glass of wine, especially if I want to maintain my Saturday morning long run schedule.

But I'll interject some optimism here. Maybe this will help me finally break a shitty habit and form brand new ones so that by the time The Last Jedi comes out in December, I'll be able to quit the meds and will be well on my way to sub-2 half marathon land for the Princess Run in February.

New Doc

I've been seeing a fairly unconventional doctor over the past year to treat low thyroid function, as I thought that might be the root of all the problems I'm having. I'd see him once every month or two, get some blood drawn, and get an increase in dosage for WP Thyroid, but nothing really changed for me. When I finally hit my max dosage of WP Thyroid (2.5 grains), he suggested another increase, which meant I was going to have to purchase two bottles of the medication each month (one 2.5 grain bottle, one .5 grain bottle), increasing my monthly drug bill from $20 to $40.

While Dr. Paleo didn't charge me for office visits, I did have to pay $50 for every blood test, so it was getting really expensive for me to keep doing this. And why would I pay twice as much to keep taking a drug that wasn't working? Doing the same thing over and over again without results is silly. I'd like to point out that if I went the conventional route, I'd probably be prescribed a different generic brand of thyroid medication that my insurance covers at a discount.

But I made the decision last month that I was done with thyroid meds, and started to phase myself off of them. Step 2 was finding a new doctor that could prescribe me something that works.

After getting a list of qualified doctors that were in-network with my insurance company, I made an appointment with the doc closest to my house. I had to wait a few weeks to get squeezed in, though, which caused me some anxiety. I'm never all that excited to have to share my embarrassing background with yet another professional, but I prefer to treat it like ripping off a band-aid. Just get it over and done with.

So my appointment time came last Thursday afternoon, and I arrived a few minutes early, signed in, and waited patiently for the administrative assistant sitting at the front desk to get settled from her return from lunch. And waited. And waited some more. When it was clear she wasn't going to check the sign-in sheet anytime soon, I approached her and introduced myself as a new patient. She was pleasant enough, took my ID, insurance card, and some paperwork I had pre-filled out, and then delivered the news that my one-hour appointment was going to cost $132.

Already I started second-guessing my decision to leave Dr. Paleo.

Unfortunately, the type of appointment I need doesn't fall into the realm of annual check-ups or "preventive care" (although I'm not sure how getting myself out of unhealthy patterns ISN'T considered "preventive care"), and therefore isn't covered by my insurance until I hit my deductible, which is $2500... so really, something catastrophic needs to happen to me in order for my plan to cover anything, at which point they'll cover 80% of my costs.

I thought about walking away, but nah. I paid it. #Desperate

Hey, this image works pretty well today too. 

The doctor didn't show up until one hour after our appointment was supposed to start, which made me anxious because this was the middle of the work day and I hadn't expected to be gone longer than an hour. Dr. Paleo usually got me in and out of the office pretty quickly. I was already getting negative vibes from this new place.

When I finally saw New Doc, I didn't waste any time. I shared my life-long problems with food, that he is professional number 127 in a long list of doctors, psychologists, and health coaches I've hired, and I just want to not have to deal with THIS. Ever. Again. In My Life. I outlined exactly which medication I wanted, how long I planned to be taking it, and how I would be able to phase myself off of it in one year's time.

Yeah, I do my research... except when it comes to knowing how much I'm going to be paying for things. Just like I was shocked that the cost of my appointment was $132, I hit the floor when I learned the medication I want costs $325 per month...

Which is why I'm here almost one week after my appointment with no medication in hand. Yes, New Doc wrote the script (only after suggesting a few other ideas, which I dismissed), I dropped it off at CVS, and have been stuck playing a frustrating game of Monkey-in-the-Middle with my doctor, insurance company, and pharmacist about whether they are actually going to fill this prescription or not. I can't afford $325 per month, the insurance company is requiring some type of "pre-authorization" that other methods have been tried and haven't worked (maybe I can send them a link to my blog as a pre-authorization), and the doctor is still suggesting other methods that - based on what I'm reading about them on the internet - I'm fairly certain will NOT work for me.

In other stressful news, the host of the Airbnb I had reserved six months ago for celebrating my friend's 40th birthday tomorrow night has disappeared off the face of the earth. As you can imagine, losing out on your accommodations the day before your trip - especially in Orlando, where everyone and their mother goes for summer vacation and pickings are slim right now - is quite disastrous. I've spent most of the day anxiously trying to get a resolution, and Airbnb helped me get another space. It was more expensive, but Airbnb covered the price difference, and it's not too much further away from Universal Studios than our original place, so at least everything is coming up Milhouse there. Airbnb is awesome.

So you won't be hearing from me until next week after my guests leave, but if I don't have my freaking pills in hand before my next post, heads will roll.

/ranting from an angry (food) addict

Chiropractor

Well, it doesn't look like I'll be seeing a chiropractor regularly anytime soon.

As great as I felt after seeing one this week, I just can't swing the $50 per appointment fee it's going to cost me to get my spine in order. When I had good insurance, I only had a $10 co-pay for each visit. I did not anticipate my out of pocket costs would be so high paying on my own.

I'll back up a bit. After I posted my intentions on Monday, I found a Groupon deal for a new chiropractor in my city that included an initial consultation, x-rays, and a second appointment with an adjustment. I purchased the deal, called the chiro's office, and they were able to get me in right away. I spent about an hour discussing my goals and literal pain points with the doctor. He took the x-rays and then performed a series of tests I didn't remember going through at my last chiropractor.

The first test involved rolling what felt like a back massager down my spine to perform a thermal scan, as high temperatures show where stress is building up in the body. Then, he used an electromyography device along different areas of my spine to measure how much energy my body is using to retain my posture. Finally, I was asked to place my hand on a device that measured my heart rate variability.

When the appointment was complete, the doctor scheduled me for a follow-up visit on Tuesday, and shared he would be emailing me the results of the tests to be discussed during the second visit. He shared that I shouldn't be alarmed at the overall "score" I was given on the test, and that we'd discuss appropriate treatment after he had a day to digest the results.

I shouldn't be alarmed? Just how badly did I do on the test? When I got home, the answer was already waiting in my Gmail inbox:

My overall score was a "55." That's a pretty solid "F." Apparently, I'm "Very Challenged."

Now, I know I'm in poor shape, but come on. I asked Google to see if anybody else had posted anything about "CoreScore." My initial thoughts were that these tests are designed to ensure that everybody "fails," putting the consumer in such a dire state of mind that they'll pay anything to get healthy again. But the few blog posts I found about it demonstrated that people do get results in the "Very Good" section, so my theory was voided.

So I went back to see Dr. Chiro on Tuesday, and we discussed his overall plan of care. The biggest surprise of the day?

My "rotated hips" are fine. The issue that drove me to go see a chiropractor in the first place doesn't even exist anymore, according to the x-rays. Hmm.

Still, he put me through a few adjustments, as well as some stretches and a little bit of traction to help my neck. He commented that my flexibility was pretty good, which was surprising to me because I've always felt a bit tight, but I'll take some positive news where I can get it. And I have to say, I felt so much better afterward. I still feel great two days later. Better than a massage, and I only needed to spend about 15 minutes on the chiro table.

So maybe there's a chiropractor out there who can help this "Very Challenged" individual for a lot less than $50 per appointment. Anybody in the Tampa Bay area have a recommendation?

Making Health a Priority

As much as I want to get to the positive stuff about the runDisney Dark Side Challenge, best to probably get all of my bummer stuff out of the way. I’ve never been more convinced that I need to always make health a priority than right this moment.

Before I left for the races at Disney, I learned my stepmother was in the hospital. You might remember her as the lady who had just been down to Florida to visit me three weeks ago and passed judgment on my choice to not eat McDonalds.

What I failed to share is that she’s been in my life since I was 12 years old and is one of the most compassionate and genuine people I know. She's my second Mom. Last year, she successfully fought skin cancer. She’s been keeping up with recurring doctor’s visits. We figured that ickyness was all in the past.

When I saw her in early April, even though she looked like her normal self, she wasn’t feeling 100%. My father confided in me that he believed her cancer had returned.

The day after she left my house, she went back into the hospital.

My last conversation with her was about how much she loved and missed my dog, Joey, and how the doctor had given her medical marijuana (funny when I realized that must be why we were having such a rambling conversation), and how she was mostly optimistic but they just needed to get a few additional test results.

And that was it. I ran my races and then left for a five day cruise, on which I had no access to email or my phone.

When I returned and started seeing what everyone was up to on Facebook, I saw a few posts from a family member and learned things had really gone south while I was away.

My first phone call was to my father.

My second phone call was to United Airlines to book a rewards miles flight back to New Jersey.

And here I’ve been since, helping my father try to live life as normally as possible, as he has pretty much been spending 24/7 by her side at the hospital.

Here’s what I know: She caught a virus in the last hospital she was in, and moved to a better facility. She’s on a respirator. Her organs are failing. She’s only 60 years old.

My 2nd mom sitting with my dog on my front porch earlier this month.

I don’t understand. How could this have gone so wrong so quickly?

So now I work during the day. I visit her at night. I cook for the family. I do laundry. I help my brother get to work and help him process what’s going on. And mostly, I try not to worry about my father and the future. This is not a scenario I ever imagined for him. One of the reasons I felt ok leaving NJ last year was that I figured he didn’t need me because he had her.

This family needs her. She's got too much life left to be lived!

Please send positive thoughts her way.