(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.

(17-03-29) Reconstructive Surgery 2.0

I’m not sure if my absence from this site has been noticed.  I’ve been in my head a lot, regarding whether to go through with this reconstructive surgery.  I think there are two reasons why i’ve been ruminating so much.  First, this is a decision that i am truly making all alone.  I know all the decisions are essentially mine to make … but i did let myself get swayed a lot with some of the previous issues (agreeing to chemo, allowing them to remove the expanders and implants, fighting the man at work), so i was able to diffuse the responsibility.  If something went wrong with any of those experiences, i could lay some of the blame on someone outside myself.  But this decision – the decision as to whether to go through several painful surgeries just to look “normal” with clothes on – is mine and mine alone to make.  If i end up being dissatisfied with my decision later, the only person i have to blame is myself.  That scares me … which leads me to the second reason for such ongoing rumination: the self-awareness.  I don’t like what i see in myself when i think about this decision i’ve made.  I should be stronger.  I shouldn’t care about looking “normal.”  I should see this battle wound as sexy evidence of just how strong my body can be.  I should be proud of my body, not ashamed.  I should want to rip my shirt off and shout, “Look at this!  Can you believe i survived that shit?!” and then have crazy, confident, completely naked with some womyn who is just as impressed by my war wounds as i am.  But i’d be lying if i told you that i see or think any of these things.

Okay.  Logistics.

Pre-op consult with Dr. Matatov to prep for surgery on Thursday, April 6.

Surgery on Friday, April 7.  It is scheduled to start at 7:30am.  They never start on time.  Dr. Matatov blocked out 10 hours in the operating room.  This is important because you may not hear any updates until 8:00pm or later (Phoenix time).  Don’t stress.  The surgery is SUPPOSED to take between 6-10 hours.

I am required to remain inpatient for a minimum of 48 hours, due to high risk of blood clotting in the first 24 hours after the surgery.  This means at the very earliest, i would leave the hospital on Sunday, but it’s more likely going to be Monday.

Just like with all my other surgeries, i am choosing not to discuss which hospital i’m having my procedure at, and i will be signing a form denying any and all visitors (for the smarty-pants people [ahem, Michelle]  who like the challenge of figuring out on their own where i am at).  Please don’t take it personally.

My mom is flying in on Monday, April 10 and staying 9 or 10 days.  If you’re one of my loved ones who tends to worry each time about whether i’ll have enough support: rest assured.  My mom’s got this one.  🙂

I am going to designate one person to be authorized to get updates from my doctor via phone; that way, there is at least someone who knows that my surgery went successfully and all that.  If you want to be added to the list of people (s)he updates, please write a reply at the end of this blog entry.

I’m not gonna lie.  I’m nervous about this – way more nervous than i was with the mastectomy.  I think it’s because i’ve had the TIME to worry.  I’m trying to keep that in check this next week.

(17-02-22) Elite Plastic Surgery

Oh, the irony of it all.

To throw a fit about taking Tamoxifen when it clearly causes weight gain … to spend hours at the gym every day doing cardio … to score myself every night on how well i managed my calories and fat grams … to fight so hard for five weeks just to lose six pounds of weight and 2% of body fat …

… to do all that and then hear the doctor tell me THIS: “It would help if you put on some weight” …

Well, at least i can laugh at the irony.

Thanks to some digging by a nurse practitioner at the Virginia G Piper Cancer Center, I learned that there might actually be a doctor in AZ who can perform the types of specialized flap surgeries i would need for my reconstruction.  I had my consultation today with Dr. Tim Matatov at Elite Plastic Surgery, in northeast Phoenix.  This consult was a world of difference compared to my consultation at the Mayo Clinic.  I brought the photo album i made documenting my breast cancer journey, and he carefully looked at all 30 pages, asking detailed questions about my cancer, surgeries, radiation damage, oxygen therapy, doctors, implants, oncology treatment plan, and hopes for reconstruction.  He reviewed some doctors’ progress notes i brought with me.  When i stripped down to have him check the fat deposits throughout my body, he literally took out a measuring tape and measured areas along my abdomen, inner thighs, and butt.  (BTW, terrible day to decide not to wear underwear!)  He explained all my options and told me which ones he thought were the safest.  He was brutally honest with me about how many surgeries i would probably need (3-4), what my real recovery time would be in between each one (6-8 weeks the first time, 4-6 weeks subsequently), not being able to promise a particular cup size up front (I *might* get to a full B in time but not at first), and how the purpose of the first surgery was NOT to give me the breasts i always wanted (but rather to get a mound of healthy living tissue attached safely to my chest area).  He explained how he deals with insurance companies to ensure that he gets paid, and he said he never comes after the patients for money in the events that insurance providers underpay.  He said he does cosmetic surgery procedures because it pays the bills and reconstructions because it is his passion.  He spoke of doing his training in New Orleans (the mecca of breast reconstructive surgery, for the record), working under Bob Allen (the breast microsurgeon who INVENTED the DIEP flap surgery), participating in 180 breast reconstructive procedures during his residency, and completing 17 flap surgeries in the six months that he has been working in Phoenix).  He said there are only 3 surgeons in AZ who do flap surgeries; the other 2 work at the Mayo Clinic (Dr. Casey being one of them).  He showed me pictures of his former patients, very graphic photos of the abdomen being cut open and stretched out during surgery (that part was too much!), and images of CT scans showing the blood vessels throughout the body.  He listened to me, examined me, and consulted with me for almost two hours.  I was blown away by the level of detail and the degree of honesty he shared during this consult.

If i do end up deciding to go through with reconstruction, i think i’ve found just the right doctor.

Surgery #1 would take place in late March.