(19-01-30) Looking Back

I’ve been up since 3:07. My internal clock has shifted drastically upon my arrival to this cancer clinic. Maybe it’s the sheer volume of all the treatments just wearing out my body at the end of the day. Maybe it’s the drastic reduction (not quite elimination, but I’m working on it) of sugar from my diet, or the fact that I haven’t had any alcohol in a week and a half. Maybe it’s the lack of stress from my job. Likely, it’s a combination of all of those factors, sprinkled with a smidgen of boredom, that has led me to falling asleep each night between 9 and 10 (a solid 2-3 hours earlier than what I am used to) and waking up (refreshed!) between 3 and 4.

I watched some Luke Cage.

I responded to some texts (sorry, Kyana, I am trying to limit that as much as possible).

I checked my Ring doorbell to make sure my roommate, Jenna, has been keeping up with walking the dog (ALMOST every day, still not doing it 30 minutes a day like we agreed on – ahem, ahem).

Then, I started looking through back emails trying to find a contact email for my supplemental cancer insurance. It’s a long shot, but I wonder if they will reimburse me for ANY of this treatment. My dad – my beautiful spirit of a father who has worked multiple jobs his entire life to provide for his children both during his lifetime and when he eventually passes – has loaned me the money to get this treatment so that I didn’t have to close out all my retirement accounts, and we know a teacher’s salary isn’t going to pay back $48-64k anytime soon, so anything will help.

As I was going through old emails, it triggered some memories I had temporarily forgotten about. This led to me spending the next two hours combing through both emails and blogs from over two years ago, reconnecting me with a part of my journey that I had stopped focusing on. When I look back at Cancer Treatment Round I, I think about the surgeries, the toll chemo took on my body, the battle to keep my job, the frustration with the length of the process, and the sheer amount of time I was confined to a bed or a Lazy Boy recliner or a hyperbaric oxygen chamber. If prompted, I can resurrect positive memories from the experience – particularly when it comes to amazing doctors (Dr. Matatov first and foremost, then Dr. Mansfield, Dr. Dhillon, Dr. Curley, Dr. Walsh, and Dr. Gunia) and all the love that flowed my way from friends, coworkers, and strangers all along the way. The majority of my thinking landscape, though, shows a pretty dismal view of all the whole experience.

It really shouldn’t.

I did some AMAZING things when I was battling cancer the first time – things I would not have done otherwise.

  • I ran in Phoenix’s last Susan G. Komen Race for the Cure. I even publicly spoke at that event.
  • I participated in Spark Off Rose, a story-telling event in CA, where I shared my journey of intimacy while dealing with cancer.
  • I helped an ASU honors student with her (videotaped!) thesis project on mindfulness techniques for cancer patients/survivors struggling with insomnia. https://youtu.be/04kYz1kSCaU
  • I was the guest of honor at a Boo-Bees fundraising event in West Hollywood, where – with the help of a unicorn – we raised several hundred dollars to donate to a local cancer organization.
  • I donated over a foot of very well taken care of hair to Locks of Love.
  • My story was the first of several to be featured on a special edition in a hiking/wellness blog.
  • I fought a state government institution and WON. That win resulted in state agencies all across Arizona having to update their employee leave policies, and I directly saw how those changes positively impacted employees going out on medical leave just in this past year.

I had definitely lost sight of the good work that was done during my first struggle. I’ve been focusing on the mindset that this is all a big inconvenience to me just as I was starting to get my life back together … and just typing that statement right there brought on a whole snotty crying fest over here because I KNOW there is so much more to my journey than the “inconvenience.” At my core, I know what kind of person I am. I make a difference in this world. I know I do. I did it before cancer, I did it during cancer, and I did it after cancer.

This time will be no different.

(17-02-16) Quantity Vs Quality

“…but you NEED to take it.”

I’ve heard this statement a lot over the past month or two.  Whenever i tell a friend, a relative, or a doctor that i don’t like the side effects from Tamoxifen, their first response is reminding me that i “need to take it.”

So let me remind you about one of the things you probably love AND hate about me the most:

I do what i want.

Now tell me again what i “need” to do?

I get it.  You don’t want my cancer to come back.  We’re in the same boat with that one.  Cancer treatment fucking sucks, and i would definitely like to avoid having to travel down that path ever again.  But you know what else fucking sucks?  Being miserable. Being miserable fucking sucks, and sometimes when you find yourself being miserable day after day after day, at some point it’s probably a good idea to figure out how to STOP being miserable.

Will Tamoxifen help me live longer?  Possibly.  I mean, that’s the point of the drug – to stop cancer cells from binding to my estrogen and thus being able to grow all throughout my body.  However, it’s not 100% guaranteed.  I could take that effin pill every day for ten years straight, but then still end up with cancer again at some point.  And in the meantime, that pill just got to spend an entire decade wreaking havoc on my body and spirit.  I mean, i’ve only been taking it for a few months, and this is what i’ve noticed:

  • I gained 12 pounds in two months.  My body fat was 1% away from being considered “overweight.”  Fat deposits were collecting in my abdomen and thighs, in a way they hadn’t before.
  • Joint pain was suddenly an issue.  Seriously – joint pain?  I am thirty-seven freaking years old.  I am young and athletic.  It shouldn’t hurt to stand up in the morning.
  • My insomnia was becoming medication-resistant again, just like when i was going through chemotherapy.  How many of you are okay with me doubling or tripling up on my sleeping meds on a regular basis?  … ‘cuz that’s what i was doing multiple times per week.
  • Hot flashes and night sweats infuriated me.  I know it seems silly, but YOU try standing in a desert and having 18 hot flashes in one day and see if you’re not ready to kill the next person who looks at you strangely.
  • Depression and anxiety cycles were creeping up on me more and more.  You know what increases depression?  Body image issues and lack of proper exercise.  You know what increases anxiety?  Insufficient amounts of sleep and lack of proper exercise.  It’s all creating its own little cycle, and i’m standing here, watching it all go ’round and ’round, feeling powerless to stop it.

In the end, it’s not worth it to me.  Many of you may not agree with my decision, but i’m choosing quality of life over quantity.

I haven’t taken the Tamoxifen since January 25.  In these past three weeks, i’ve lost 6 pounds, seen a slight improvement in my sleep cycles, dealt with half as many hot flashes, and noticed how much better my emotions/moods have been.  Dr. Curley prescribed me a different option, Femara, which i picked up from the pharmacy on January 30 but never bothered to even open.  For now, i’m going to try to fight cancer recurrence through diet and exercise.  Trying to completely eliminate sugar from my diet has been, HANDS DOWN, the hardest thing i’ve ever tried to do in my life, by the way … but i’d choose this battle over taking Tamoxifen any day.

(17-01-27) Weight Gain

After repeated Internet research, consultations with an oncology exercise specialist and an oncology nutritionist this week, five days of obsessive-compulsively logging my food and exercise, and a heart-to-heart with my oncologist, my fear has been validated:

The Tamoxifen is causing my weight gain.

9 pounds in six weeks.  12 pounds since October.  This is not an acceptable option for me.

I requested to meet with Dr. Curley to discuss alternatives.  “You need to be on Tamoxifen,” he tells me, before explaining to me once again that without taking a medication to block the estrogen in my body, my chances of recurrence are high.  My particular cancer NEEDS estrogen to survive.

I stare at him, unblinking.  “Yeah, yeah, i understand this … but i need YOU to understand that what i am currently doing to try to keep myself from gaining more weight is not sustainable, and it’s borderline unhealthy.  Going to the gym 1.5-3 hours a day, 6-7 days a week, and eating 1500 calories or less is not going to work long term  … and if i gain any more weight, you and i both know i will just abruptly stop taking these meds.”

We go back and forth about this for a while, stuck in our own perspectives of what is “best” for me.  He sees “keeping the cancer away” as best for me.  I see “being proud of what i look and feel like”  as best for me.  We are not on the same page; i get that.  Still, in the end, i am the one who gets to make the decision, and i am not willing to take this drug for the next 9.5 YEARS if it’s adding 4-5 pounds a MONTH.

In the end, we reached a compromise.  I agreed to take a smaller dosage of the drug every OTHER day.  Meanwhile, he’s testing my blood to see if i am eligible for a different type of estrogen-blocking medication.  I agreed to spend the next three weeks strictly abiding by the food and strength training plans that the oncology nutrition and exercise specialists laid out for me, and he agreed that we would figure out a different plan if i gain any more weight in those next three weeks.

I went home and hosted a book club social at my house that evening.  I overindulged in food throughout the night, snacking continuously on cheese and crackers, vegetables and hummus, dark chocolate, 1/3 of a vegetarian burrito, and 4 ounces of tequila.  2,531 calories for the day – way over my daily limit, but hey, at least i burned 591 calories from being on the elliptical for an hour.  That has to count for something, right??

This morning, the scale showed i had gained 2 pounds.

I didn’t take my Tamoxifen.