In Between Exhales

In times of uncertainty I hold my breath. Figuratively of course, otherwise I would have passed out long ago. And for the past three days I found myself in between exhales.

I started figuratively holding my breath a few weeks ago when my period came and went with minimal fanfare. Heavier than usual but still in the relatively predictable range. And then the spotting started. Random.

Perhaps if this hadn’t been preceded by heavier and heavier periods, I would have ignored it.

Perhaps if I hadn’t spent four years, one month and nine days taking Tamoxifen, I would have ignored it.

Perhaps, and mostly likely, if I erased the last several years from my knowledge base, I would have thought this in-between bleeding was annoying at most. A precursor to an early menopause perhaps.

But I cannot erase the last six years. The last six years was about cancer. My mom’s cancer. My own cancer. My friends’ cancers.

Living it and learning about it. Losing friends to it. Trying to change the way we treat it and Learning about the drugs that keep cancer away and simultaneously elevate one’s risk of endometrial cancer.

And so, denial by the wayside, I penned an electronic missive to my doc with all the details.

I expected a response to the effect of, “Welcome to your forties, this is totally normal.”

Instead I received, “I recommend we do an endometrial biopsy.”

And the breath holding began in earnest.

Thankfully when I finally decide to address an issue*, I do it as swiftly as possible so the appointment was a mere 24 hours after my note to my doc.

In the morning when my husband asked me what was on my agenda, I came clean. In steps.

“I have a doctor’s appointment.”

{pause}

“My annual. Well, sort of my annual.”

{pause}

“Well an endometrial biopsy.”

And then the rest came tumbling out.

I hadn’t planned on hiding the appointment but I hadn’t exactly planned on sharing it either.

Two years ago I had some random pain. My oncologist recommended an ultrasound and we found some cysts. Complex cysts. We waited a few months and scanned again. That waiting was one enormous breath holding activity. And no fun for anyone.

Just last week my daughter brought up that period of time. And the fact that we were all holding our breaths.

So, two years later, when faced with a similar scenario, I made an executive decision to keep my concerns and my neuroses to myself.

Unfortunately my children are old enough to be online so putting out a blog post without sharing the reality first is a definite no-no.

This is the no-no that I would have been committing had I posted this days ago when I actually wrote it!

After a series of random texts to a dear friend, I picked up the phone and called her. We chatted for two hours about life and work and kids and then, less than an hour before my appointment I was left to my own devices sans distractions.

I sent a quick email to my BAYS community with little detail but with a humble request to direct some good juju my way if they could spare the energy. By the time I checked into the appointment, my inbox was filled with good momo, virtual embraces and love.

For those of you who are reading this post looking for the 411 on an endometrial biopsy, you will be disappointed. Procedures are different for each person so I’ve no interest in either scaring someone or alternately underselling the experience. Bottomline? I showed up. (I did rate my visit tho...)

And was able to exhale with, “At least I’m addressing it. Whatever ‘it’ is.”

My doc was clear that results could take ‘up to a week’ so I was preparing myself and my shallow breathing for the next week until I get the “everything looks normal but it’s great you came in” email.

 

Essentially, I was “in between exhales.” A phrase that I feel sums up much of cancer survivorship.

And just about five minutes ago, I received notification of an electronic message. The notification actually felt like the precursor to good news because I know he would have called if something had been amiss.

“Your recent endometrial biopsy on 2/12/2019 did not reveal any worrisome abnormality.”

And, despite the fact weird things are going on, I’ve now had a full body exhale. 

Because, whatever it is, it’s not cancer.

*And sometimes I don't decide to address and issue so quickly. Denial and avoidance are totally solid coping mechanisms in my opinion.

Ruminations: Sitting Alone in a Paper Sheet

I found myself all alone in a paper sheet yesterday.

Yep, no hospital gown, just a blue "paper" sheet in the exam room.

Longer story that may come out in the end but right now, while it’s fresh, I wanted to give some very specific feedback to health systems in general based on my experience.

A few days ago, I sent my gynecologist a note via my health portal. Something was amiss and I knew I should make an appointment. I didn’t want my 15 minutes of appointment fame to be filled with initial explanations and level two questions so I emailed the nitty gritty plus a few potentially relevant (or potentially extraneous) details to my doc. And, despite the fact he has full access to my medical record, I reminded him of my health history.

His response was rapid, his recommendation was for a biopsy.

My fears aside, I was glad that we had established everything we could via email, in advance of my appointment so the office/procedure time could be as effective and efficient as possible.

I checked in 19 minutes prior to my scheduled appointment time, filled out the requisite health history form (on paper) and was called back within 6 minutes.

The MA introduced herself, asked me about my day, and took my vitals after confirming my name and birthdate. She showed me back to an exam room (lucky number 16!) and asked me the reason for my visit. Part of me was glad she was verifying but part of me wished she would have just confirmed the reason for my visit based on what was in my record. I mentioned I hadn’t had time to give a urine sample and she verbally directed me to the restroom. I asked what the urine sample was for and she said, “pregnancy test.” I explained that I was definitely NOT pregnant and she said, “It’s just protocol before a biopsy.” 

I peed in the cup and considered the fact that it cost me $10 (lab fee) to prove that I was not pregnant and who knows what it cost the institution in materials.

Two minutes later, she had given me the instructions to undress from the waist down and given me a blue paper sheet to cover up with. On her way out, she mentioned that Dr. C was, “running a bit late, so it might be a few minutes.” The door closed behind her at 2:25pm.

I sat half naked in the absolutely soulless exam room for 21 minutes.

I was nervous. When I’m nervous I get cold. I looked around the office, but no blankets were readily available. I considered asking for a blanket, but I was wearing a blue paper sheet.

I remained nervous. When I’m nervous I have to pee. I considered going to the restroom about 30 feet away, but I was wearing a blue paper sheet.

I could hear discussion in the next room (yep… totally!) and the individual was being referred to oncology. My heart ached for her and my nerves ramped up one more level.

When Dr. C came in, he greeted me warmly and we chatted for a bit. He expressed his surprise at the concise set of symptoms and health history I had sent him the day before, and I mentioned that I wanted our visit to be as effective and efficient as possible.

Dr. C thoroughly explained the endometrial biopsy procedure to me, even though I’d had one before, and asked if I had any questions. He called the MA back in the room and all the “fun” stuff began.

The procedure is what the procedure is, but I was appreciative for his gentle demeanor and he took my lead by talking as a good distraction from my discomfort. Just before we began, the MA suggested I use the heating pack proactively during the procedure and helped situate me.

After the biopsy, I remained in the blue paper sheet while Dr. C explained what we were looking for, and what my options were, depending on what we found. He said, “Results will take a week. Well, I SAY a week, but we will likely have them sooner. I just want to set expectations appropriately.”

All of my questions were answered, and I left the office.

While there exists another blog post talking about the emotional and psychological aspects of everything involved in this visit and now waiting for results, I actually thought I’d use this experience to give a bit of a report card for my visit.

THE GOOD:

• Rapid and detailed response to my initial email helped ensure the appointment was directed in the right way (biopsy as opposed to conversation that necessitated an additional appointment).
• I was taken to an exam room within 5 minutes of my appointment time. Especially in cold and flu season, I appreciated being in my own space.
• Disposition and demeanor of my gynecologist: eye contact, thorough explanation of procedure; thoughtful responses to my questions
• MAs suggestion to proactively use the heating pack and her help with getting it situated made me feel cared for.

THE LESS GOOD:

• 21 minutes of half-naked solitude
• Financial and material waste of a pregnancy test
• Ability to overhear parts of the conversation in the next exam room
• Paper health history forms (especially since I've been seen there for the last eight years)

WAYS TO IMPROVE:

• Warm blankets! For me, a warm blanket is a physical and emotional salve. 
• Provide more specific “running late” information
• Decorations (or just some wall colors!) in the exam room
• Music in the exam room (for my wait and for the procedure)
• A more thoughtful protocol around pregnancy testing
• Health history update form sent electronically prior to my appointment