Tuesday, June 06, 2017

A Long-Awaited Cancercation

I’ve come to the unfortunate conclusion that cancer never ends. It lasts days and weeks and months and years. Even decades. I thought 15 months into it that I was nearing the end. I assumed by this point, I’ve pretty much seen and done all there is to see and do in the arena of cancer carousal, and my treatment was finally nearing its highly-anticipated demise.

Boy, was I sadly mistaken.

Now don’t go getting all worried on me. I’ve not had a recurrence of cancer. I am, as far as I know, cancer free right now. That’s something that should be celebrated. I should be embracing my new lease on life. Living it up. Getting in touch with my inner wonder. Following my bliss. Blah…blah…yackety blah.

That is not to say that I would not like to be following my bliss. I would looooove to follow my bliss right outta town right now. Unfortunately, it’s hard to follow your bliss when she has yet to show her smug little face. I imagine my bliss is soaking in the sun on some Caribbean beach or another. Or maybe she’s sipping tea and happily perusing dusty old books in a tiny book store on a rocky crag on the Scottish coast. Or probably more likely, she is cursing in traffic on I-35W. Whether she is sunning or sipping or stewing, she’s definitely not sitting at my kitchen table as I write this.

I saw my oncologist yesterday and had to tell him that it’s been a rough couple of weeks/months. I was feeling great following my radiation. My energy was coming back, my neuropathy was clearing up. Even my chemo brain had finally dissipated (somewhat) and my grasp of the English language was once again returning. I was riding high on a wave of this-shit-is-finally-coming-to-an-end.

Then I starting hormone suppression therapy and everything went to hell in a pink ribbon adorned handbasket.

I started out taking Letrozole, an aromatase inhibitor. That stuff is NOT for the faint of heart! Almost immediately, I began experiencing bone and joint pain that became more intense as time went on. It was brutal. Suddenly, I was unable to walk without a painful, pronounced limp. Rolling over in bed was excruciating. I started missing work because it hurt, literally, to move at all.

After holding back tears in my oncologist’s office, we made the tortuous decision to switch from the slightly-more-effective Letrozole to the slightly-less-effective Tamoxifen because it was not supposed to cause bone pain – or least not as severe.

I’ve been on Tamoxifen for about a month and a half now, and the pain is still there. I walk around like a 100-year-old woman. Every step shoots pain from my hip, down my thigh, to my knees. My feet ache constantly. I can’t sleep on my back because my tailbone hurts, but I can’t sleep on my side because my hip hurts. Sleeping on my stomach is completely off the table because with no boobs to provide a counter balance, my stomach seems three times as big as it was before. I would look like a freaking teeter-totter!

So, in short, switching to Tamoxifen did not help at all.

I saw my oncologist yesterday and we came up with the following brilliant 4-point plan:

  1. Stop taking the Tamoxifen and the study drug (Palbociclib) completely for a 2-3 weeks. 
  2. If the pain goes away (fingers crossed), we confirm with 100% surety that my symptoms are related to the meds. If not, we will explore the possibility of other underlying medical conditions such as osteoarthritis. 
  3. Start taking the meds again because I had 7 positive lymph nodes, so I really have no fucking choice whatsoever if I want to remain alive and cancer free.
  4. Develop pain again. 

Though the plans sounds ludicrous in its utter uselessness, it will (hopefully) give me a break from the pain while I am on vacation with my family for the next few weeks. If the pain goes away, it will rule out any other issues contributing to the pain. Once we determine that there is no underlying medical condition to explore (which I suspect will be the case), we will work on ways to deal with the medication-related pain. These may include, but are not limited to, the following: 

  • Referral to a pain clinic
  • Physical therapy
  • Biofeedback
  • Switching my Celexa and Gabapentin to other drugs, such as Effexor and/or Lyrica
  • Crying
  • Curling up in a fetal position in my bathtub and refusing to budge
  • Eating enough potato chips to nudge my BMI from morbidly obese to oh-my-God-she’s-gonna-blow!

In the meantime, I hope to be pain-free and frolicking on the beach next week.

Yeah, I frolic.

It's not pretty.   

Wednesday, May 24, 2017

Oh, for Fox Sake!

So I’ve had an interesting couple of weeks. As I’ve talked about previously in this blog, my mom was diagnosed with breast cancer almost exactly one year to the day after I was diagnosed. It was caught early and she has had nothing but good news about her treatment and prognosis, which has been wonderful and a huge relief. I am thrilled for her, but I can’t say that her cancer is not affecting me.

As a dutiful daughter – and as someone who has already been down this road before – I have been going with my mom to her doctor appointments. It’s been interesting, to say the least. The conversations have gone a little like this:

Surgeon – “Don’t worry, your pathology report is nothing like Shannon’s report.” “Don’t worry, your chance of developing seromas like Shannon did is very slim.” “Don’t worry, your cancer is much, much, MUCH smaller than Shannon’s.”

Oncologist – “Don’t worry, your treatment plan is going to be nothing like what Shannon went through.” “Don’t worry, you don’t need chemo like Shannon did.” “Don’t worry, you won’t lose your hair like Shannon did.” “Don’t worry, you may not have to take hormone-blocking medication like Shannon is taking with a cancer as tiny as yours.”

Radiation Doctor – “Don’t worry, you shouldn’t have nearly as rough a time as Shannon had.” “Don’t worry, you will only have to do three weeks of radiation instead of six weeks like Shannon did.” “Don’t worry, we don’t anticipate you having the burns and infections that Shannon experienced.”

I am beginning to think that I am a cancer over-achiever.

Leave it to me to be a slacker in all areas of my life except this one. Education? Never got around to enrolling in graduate school. Parenthood? I’m probably the okayest parent you will ever meet. Relationship? Ruanita tolerates me (but she may have low self-esteem). Morality? Questionable. Career? Meh. Ambition? Nah. Income? Ha!

The one and only area of my life in which I am an over-achiever is on the cancer front.

Stage III cancer? Check.
Twenty weeks of chemo? Check.
Debilitating neuropathy? Check.
Chemo brain? Check.
Double mastectomy? Check.
Multiple seromas? Check.
Ugly pathology report (7 of 14 lymph nodes still positive after chemo)? Check.
Radiation burns? Check.
Infected skin? Check.
Bone pain from aromatase inhibitor? Check.
Obsession with those 7 positive lymph nodes? Check.
Total conviction that the cancer will absolutely, definitely come back? Check.

It’s that conviction that it will come back that has been bothering me the most lately. It’s probably because I’ve been going to my mother’s appointments with her. I want to be there for her, but I would be lying if I said I wasn’t experiencing some mild PTSD-like tics as a result. While it has been nice to see my surgeon and the radiation nurses again – I truly adore them all – the constant reminder of just how bad I had it has been an interesting development. Not many people get to RE-experience their whole cancer journey like I am, I would think.

The reminder of how dire my situation is/was/almost was/might still be has been tough. I’ve found myself obsessed with those seven tiny positive lymph nodes. Seven tiny nodes. It’s amazing to me the level of anxiety they can provoke.

For the past two weeks, I have been maintaining an anxiety baseline somewhere between a nun at a penguin shoot and a ceiling fan store owner with a comb-over. It’s a low-level, constant sense of dread. But sometimes it can work itself up into a tornadic whirlwind of doubt and fear and unease. I can be sitting on a perfectly mundane conference call minding my own business and it will suddenly take my breath away.

I’m told it will get better with time. I’m told to focus on the positive. I’m told to try to resume my normal life. Get exercise. Find a hobby. Read a good book. Embrace. Your. Bliss.  

Yada. Yada. Effing yada.

I know what I need to do. It’s just that it’s hard to convert intellectual understanding (intellectually, I know worrying will not reduce my odds of getting cancer again) to emotional solvency (most days, I have the emotional stability of a hungry toddler three hours past nap time).

And to make matters worse, today there is a new development.  

I am pretty sure I am developing lymphedema in my left arm. It’s the one complication of cancer treatment I have not yet experienced. So, of course, being the over-achiever I am...

It hurts. It’s slightly swollen. It’s sore to the touch.

I’ll call the clinic in the morning.

I hear lymphedema sleeves are sexy.

Tuesday, May 09, 2017

Masochism or Machismo?

You guys are big, fat, lying, poopy-head liars!

When I use the collective “you,” I am not referring to all of you. Or even most of you. But some of you are definitely guilty of some major fibbing. If not outright lying, you definitely misrepresented the facts. You know who you are. And I know where you live.

Acupuncture is ahhhhhh-mazing!
OMG, you’ll love it soooooo much!
You can’t even feel the needles.
It’s sooooooo relaxing. You will be amazed.

So I went to acupuncture this afternoon, and I am still waiting for the ahhhhhh-mazing to kick in. It wasn’t horrible, per se. But I can’t really say that I enjoyed it. Honestly, I am not entirely sure how I feel about it just yet.

That said, however, there’s a teensy tiny chance that my disillusionment may be more my fault than yours. (Though I prefer to blame you.)

First and foremost, I convinced myself that my acupuncturist would be Mr. Miyagi from Karate Kid fame. This may be slightly racist – I’m not completely sure – but I was looking forward to waxing on and waxing off. I mean, how cool would that be? Mr. Miyagi poking me with sharp needles while whispering in my ear, “First learn stand, then learn fly. Nature rule Daniel son, not mine.” My name’s not Daniel, but I could be convinced to answer to Dani. Anything for Mr. Miyagi.

Okay, I didn’t really expect it to be Mr. Miyagi. A girl can dream, of course. But if my acupuncturist wasn’t going to be Mr. Miyagi, I had a definite “type” in mind. He would be tall. Probably bearded. A man bun would be perfectly, sloppily balanced on top of his head. There would probably be quinoa involved….somehow. And maybe kale. A bicycle would likely be propped up in the corner. He’d smell of baking soda deodorant and craft beer. You know…the type who would be into alternative medicine and Eastern philosophy.

Imagine my surprise when a tiny middle-aged Asian woman walked in. I hate to say it, but her complete normalness was a bit of a disappointment after my man-bun/quinoa/craft beer fantasy. But she was perfectly pleasant, so I recovered quickly.

That is, until she pulled the needles out from under her sinister cloak of doom. Yes, the needles are narrow. Yes, the tips are tiny. But those mothers sting like a bitch! Whoever told me that you can’t feel the needles at all obviously has 1.) A sadistic sense of humor, or 2. Irreparable nerve damage. Since I consider this person a dear friend, I am going to call it irreparable nerve damage and hope she accepts my condolences.

So the needles stung going in. That was no fun. I won’t sugar-coat it, the needles sucked. But then to make matters worse, the acupuncturist (who smelled of lavender and not beer) did not immediately remove the needles. As a matter of fact, she just left the room. Just walked right out the door. There I lay on my back on the exam table like a pleasantly plump Edward Scissorhands. Unable to move. Unable to flex my toes. (Flexing my toes is a weirdly big deal to me.) Unable to scratch my nose for fear of piercing my left nostril. All alone.

For Twenty. Freaking. Minutes.

Nothing to do. Nothing to look at. No one to talk to. All alone with my thoughts. Inside my own head is a dangerous place to be at the best of times. But when I have twenty needles protruding from my hands and knees and feet and ears (my EARS, for heaven’s sake!), it is downright dangerous.

It was not relaxing. It was not peaceful. I did not enter a Zen-like meditative state. Instead, I lay there for twenty minutes relentlessly tapping my fingers on the table while seriously considering the social and medical ramifications of running, screaming from the room with needles poking out of my kneecaps.

I might be a wee bit high strung.

Eventually, the needles were removed and I left the office smelling of mint from both the oil the acupuncturist rubbed on my feet and legs afterwards and the two giant adhesive pads (?) that I was told to leave stuck to my ample hips for 24 hours. I assume they are pain pads of some sort, though I did not receive an explanation and was in no mood for extended conversation at that point anyway.

I have at least three more appointments scheduled at this point – once a week for the next three weeks. I haven’t decided yet if my masochistic streak runs deep enough to eventually enjoy acupuncture or if I will simply grin and bear it on the off chance that it may provide me with some relief from my constant joint pain. Those are the only two options, as far as I see it. Masochism or machismo.

There is a really good chance I may not be the ideal candidate for Eastern medicine.