Category: Navigating the new me

Thursday, September 8th

My eyes quickly scan over the MRI results. The summary diagnosis states “Neural foraminal stenosis”, I flip through the page reading further. “Broad disc bulges” stands out. I flip through to the second set of MRI findings. My eyes fixate on the word “T2-hyperintense area … lesion” In addition “there is a 7x5x7 mm rounded T2-hyperintense structure”. These words are meaningless and yet they are not. The word lesion sounds an awful lot like cancer, and yet the MRI report does not say as much. The report guesses that the T2-hyperintense structure “likely represents a nerve root sleeve/perineural cyst. If clinically warranted, additional contrast-enhanced imaging could be obtained to more definitively exclude a solid lesion”

I decide to see if Dr. Google can help me make some sense of the report. The word that is stuck in my mind is “lesion”. The main diagnosis of neural foraminal stenosis is not what worries me. What worries me is that T2-hyperintense area. The radiologist reports the exact size of one of the lesions. There is more than one. They explain the onset of upper back pain. They explain some of my odd symptoms. They may even explain the popping sensation in my ears – that is if they are actually perineurial cysts – at least that is what Dr. Google is telling me. But my mind cannot move past the idea that this could indeed be cancer.

After reading the report, I know that I will need an additional scan – this time with contrast. There is also mention of cervical stenosis so those areas will need to be included in the next scan. The logical person in me says to wait for an appointment with a specialist before getting any more scans. I convince myself that I don’t want to go through the scan multiple times. But the emotional part of me does not want to wait. The waiting feels like forever.

Hours after getting the results I have an appointment with my primary care doctor. I had the forethought to book the appointment with her the moment I had the MRI booked, so that I would not be stuck waiting for results. When I go to see her, she doesn’t say much. I think I asked about arthritis but I don’t recall her answer. I asked about the lesions. She suggests that she could order the scan with contrast but would rather wait and let the specialist determine what additional scans are needed. If I need to, I will push the specialist for a scan with contrast. I need to know whether or not those lesions could be cancer. The waiting is killing me.

While I’m still in my primary care doctors office my phone rings. It is the office of the physiatrist calling to setup an appointment. I’m amazed at how quickly I can get in. I could see the doctor on Wednesday, however, I have plans all day that day. I push the appointment to Thursday. What matters is that I have the referral for the specialist. That is the next step. Until then, I will need to wait.

Thursday, September 15

The doctor walks in the room. I notice immediately his mannerism are different. I cannot place them. He is almost like a character out of a cartoon, animated in everything that he says.

“How can I help you?”

“I have back pain” I say, clutching the printout of the MRI

“Does the pain radiate to your feet? Your arms? Do you have numbness or pins and needles?”

The doctor, a physiatrist, isn’t particularly concerned about the cysts showing on the MRI. He doesn’t seem to be particularly concerned about anything. He does, however, order more tests. An MRI of the thoracic spine with contrast and an MRI of the cervical spine. Once we have all the information we can figure out what to do.

What strikes me most about these encounters is that my mood and my emotions seem to be tied to the ways in which the doctors tell me about the issue. My family doctor refers – she avoids telling me. When I had cancer I could see it in her eyes. This time I could see some form of concern. I think that is what lead to the high levels of stress leading up to the physiatrist appointment.

The physiatrist seemed to be not worried at all. When I explicitly asked about the cysts, he said, they were just fluid filled pockets – an incidental finding on the MRI. We will do a contrast MRI just to be sure, but his mannerisms seem to be not ones of worry or concern. Maybe it is just his normal mannerism. I don’t know. This is the first time I’ve seen that doctor. Does it matter? I have been much less stressed about the whole thing since that visit. Perhaps that is part of his treatment?

He pretty much said, we treat it (the stenosis) with anti-inflammatories and pain meds. We leave surgery as a last option. Until my pain is radiating or causing numbness or other issues (e.g. incontinence) they stay very conservative with treatment. No need to see the neurosurgeon, yet. He mentions the possibility of an anti-inflammatory injection and lists off the side effects like a commercial on TV, including DEATH. Ya, nice. Maybe I’ll wait on that one.

And so, I wait another week. I’m busy – really busy – teaching, research, closet install, storage locker emptying, conferences, doctors appointments, grocery shopping, preparation for surgery next week (minor arthritis in the toe issue), and throwing in daily exercise … so much happening that I don’t have time to worry. Perhaps this is what it means to get back into life post-cancer – busy, busy, busy.

Feature image: By Blausen Medical Communications, Inc. (Donated via OTRS, see ticket for details) [CC BY 3.0], via Wikimedia Commons

I scan over the document that she hands me, and immediately my eyes fixate on one word malignant. An uncontrollable wave of emotion hits me. Tears start streaming from my eyes. Just at that moment, the ultrasound tech opens the door to the waiting room and calls my name. She introduces herself but I totally miss her name. I cannot think about anything except that word–malignant.

“Please remove everything from the waist up and put on the gown with the opening in the front”. She then goes to step out of the room. I look around searching for a box of tissues, and cannot see them. I stop her from leaving asking for the tissues, as tears fall from my eyes and my nose starts to drip. I hate that nose dripping feeling that comes with tears.

I wipe the tears from my eyes, blow my nose, and take off my shirt and tank top. I put on the gown with the opening at the front, not bothering to tie it up so that the tie doesn’t get in the way of the exam. The tech left me a warm blanket. I lay on the exam bed and put the warm blanket over me. The warm blanket is such a nice touch, it feels like a hug.

The tech returns to the room, “I’m going to scan your left breast. Do you feel something?” I show here exactly where the lump is that I’m feeling. Lump, it is such a loaded word. Just like malignant. It doesn’t really describe what I feel. I feel an area of hardening inside my left breast near my underarm. It is only noticeable if you press it. I feel my breast and find the hard spot. I show the ultrasound tech and she takes a marker and marks my skin.

“Please roll onto your right side, I will place this foam cushion behind your back to make it more comfortable. Also, please lift your left arm above your head.” I do as I’m told. The cushion makes it easier for me to relax in the awkward position necessary for the exam. Tears are falling from my eyes again. I lose all sense of feeling. At some point she squirts the ultrasound gel on my skin but I don’t feel it. She starts the scan, and I watch the screen. The areas of white and black swirl on the screen. She stops occasionally to hit a button and take a still picture of what is on the screen. The entire exam takes less than two minutes.

“I’m going to show the images to my boss, the radiologist, and she will come in and possibly do more scans, and let you know what she sees”.

I am paralyzed with fear. Tears rolling down my eyes. I remember the words “the radiologist wants to see you”. Words from the day my world got turned upside down. The words I never want to hear again.

The radiologist, a lovely lady with long curly hair, walks into the room introducing herself. Again, I do not catch her name, tears pouring down my eyes. “The good new is, that I see nothing of concern on the scans. No signs of cancer, no signs of swollen lymph nodes. We will be happy to scan anytime if you notice any changes.” It was the changes that brought me here. I take a deep breath and let out another wave of tears, this time they are tears of relief rather than tears of fear.

I tell the radiologist “thank you for coming in and giving me good news. It is nice to have a radiologist tell you something good rather than only the bad stuff”.

Although there is very little use of the term within the academic literature, within the cancer blogosphere this phenomena is known as scanxiety–referring to the fear of scans after a cancer diagnosis. I do not recall when I first heard the term, but I immediately understood what it mean. The anxiety around getting scans and awaiting the results of scans. This is especially the case after a cancer diagnosis, when scans are often the only means of determine whether or not your cancer has returned or whether or not it has progressed (gotten worse).

I recall reading about scanxiety (sorry, try as I might I could not find a reliable source), that it was not so much about the fear of results, but rather the memories of past tests and past test results. I think my experience this last week is a demonstration of exactly that. I was pretty certain that what I was feeling was scar tissue; however, walking into the ultrasound room for my first breast scan since surgery back in December 2014, brought back a flood of memories, a flood of intense sadness, a flood of fear.

The story above is based on my week this last week. I wrote it in a different format – one that I’m playing with. It is part of my experimenting with a new voice when working on evocative authethnography for my PhD research

What did you think? Did the story communicate at least some of the emotions associated with scanxiety? Was it more effective that just describing it, which is pretty much what I did in the two paragraphs following the story. 

Feature image Public Domain available from Wikimedia Commons.

Therapist: What is it about camping that recharges you?

Me: I love the early morning. I get up before the campground wakes up. I make my first cup of coffee, and then sit in my camp chair reading. I listen to squirrels scampering around and making clicking sounds. I listen to the birds singing, announcing the sun rise. I take deep breaths and soak it all in. I listen as the campground starts to wake up. Others rustle themselves out of their tents. For me, this is my morning recharge.

Therapist: How can you do this at home? You can remove the artificial barriers that you are setting.

This is where it occurred to me. I had hoped that my living room would be my sanctuary, but it just has not turned out that way. Then it occurred to me. I have a lovely front porch. I can sit in my rocking desk chair with my second cup of coffee. I can listen to the animals in my neighbourhood chirping. Today it seems I will also be hearing airplanes fly over as they take off and land at the nearby airport. I can hear the wind chimes on my porch. I can have my morning peace to help focus my day.

I now have a new morning routine. A time where I sit for about 15 minutes – I don’t really watch the clock, I just sit and enjoy my coffee. I listen to the world going by. I colour in the pretty patterns from my various adult colouring books. It is meditative. It is peaceful. It helps me clear my mind. It helps me process whatever feelings I need to process that day. It is my morning time out.

Feature Image Credit: Rebecca J Hogue. 

Yesterday was a significant anniversary. It was a day of transitions in my life. It was my father’s birthday (belated Happy Birthday Dad). It was the 8th anniversary of the launch of our GoingEast journey around the world without airplanes.  Two years ago today was the day I started chemotherapy.

July 7th has so much significance in my life and yet I missed it yesterday. I was so busy with meetings, and tired after an exhausting week at a long conference. I didn’t notice it was July 7th until 10pm at night when I glanced at the date. In some ways that is good – it means I’m moving on with my life.

I’ve been challenged by several people to look forward and ask myself where I want to go with this PhD. What do I want to do? What are my goals?

After the whole brain MRI thing, I am finding myself needing to find time for stability. I need to find a normal that doesn’t involve the crazy scares and feeling tired and like crap. This PhD time is a time for me to work on things and try to get back to a point where my health is stable enough for me to actually think about where I want to be in two years. I just am not there yet. I’m still picking up the pieces.

I do find it annoying (as do others with hormone positive breast cancer) that the hormone therapy phase is not considered active treatment. This causes a perception that it is easy – no big deal – and that you are healthy and ready to get back to life. Although this is true for some women, it isn’t for many. For me it has been a bit of a roller coaster. I get stable for a bit and then sudden I’m thrown for another loop. I climb back up on step at a time but then suddenly another drop – perhaps not as low as the previous – but it is back again.

I have moment of denial – where I look back and think about how this really isn’t happening to me. Denying the past as a way to reach for a future that doesn’t include constant doctors appointments, and disruptions to all the forward moving things I’m doing.

And as I type this I am just plain tired. I need to nap and relax for a bit. This has been a jam packed week and I need a little down time to process it all – but also a little time to just process nothing and recharge. And with that I shall sign off for today …

What has happened to it all?
Crazy someone say
Where is the life that I recognize?
Gone away

But I won’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

~ Duran Duran, lyrics to “Ordinary World”

It is hard to believe that two years ago today the radiologist told me I had breast cancer. I had felt a hard area in my left breast. After a week I went to see my Family Medicine Doctor. She ordered a diagnostic mammogram – my first ever mammogram. Immediately after the mammogram and ultrasound, the radiologist told me I had breast cancer and sent me immediately to the surgeon who did a biopsy. I was so thankful that the words at the bottom of the appointment sheet said “you will get your results immediately”, so my husband was with me when I saw the radiologist and the surgeon.

I look back over the two years and I’m sad. Somehow a lot of the tough memories seems to stick, where the fun things don’t seem to be as present in my mind. It does remind me that I need to get out and laugh more. I need to have more fun in my life. I also need to reflect on all that I have accomplished in the last two years. I did not just sit back and watch TV for two years (although I did watch a lot during chemo). I walked a lot. I swam a lot. I biked a lot.

I’ve accomplished a lot in the last two years. I’ve had three co-authored papers published, and two more have been submitted for publication. I co-founded Virtually Connecting. I’ve published a couple of short pieces in the online journal In-Training, wrote a piece for the BAYS anthology, and have another piece coming out soon in Wildfire Magazine. I’ve attended many conference and presented at a bunch of them (#et4online, OLC Innovate, AAG Medical Humanities, ALT-C, QUB ePatient, Big Ideas Fest, dLRN, MedicineX Ed, Social Media and Society, Celiac Disease Foundation Annual Conference). On the conference front I’m actually pretty scattered. I go to conferences on Educational Technology, Medical Humanities, and Medical Education. I’m trying to find the space where my research fits. Oh ya, and I’ve written 476 blog posts for this blog! And several for my other blogs (rjh.goingeast.ca, goingeast.ca/blog).

But I still look back on the last two years with some sadness. What I went through doesn’t inspire me. It doesn’t make me feel stronger or a better person. That whole cancer narrative of ‘what doesn’t kill you makes you stronger’ isn’t at all how I feel today, although it is how I feel some days. I’m stronger physically. I can hike a lot further than I’ve been able to hike before. I hiked the 7-mile Mount Tam Peak Hike for prevention while on chemo and then again last year. I also walked 32.5 miles in two days for the Avon walk. I could not have done that before. I am also swimming more. I swim a mile almost every time I get in the pool (once or twice a week). I’m trying to get back on the bike but that is proving to be a bit of a challenge (I think more mentally than physically). And yet I also have lot of physical reminders. I still have neuropathy. I still get random pains from time to time that send me into downward spirals where I need to remind myself that there is most likely a non-cancer reason for the pain. In some ways celiac disease diagnosis was a blessing, because it gave a different reason for some of my pains. Celiac is a huge pain, but it is manageable.

I also have to honor how lost I was before my diagnosis. My PhD research wasn’t going well. I had not made the short list for my dream job and was feeling like I was at a cross roads with respect to career options. A reset is what I needed.

Perhaps the one good thing that came out of the last two years is all the new friends I have. I’m a lot closer to several online friends, but also have some great friends here in California. We like to say ‘the best friends you wish you never met’ – and that is so very true. I have met so many amazing women from different walks of life, all struggling to get through life with this disease.

In March we bought a house. We tackled a bunch of renovations on our own. I did so much more than I thought I could do (and perhaps a little more than I should have done). We are still working on making the house feel like a home – but it is getting there. It is so much nicer than the apartment we were living in before. As I write this I can hear birds chirping outside my window and can hear the keys click on my husband’s keyboard. Our old place the sounds would have been washed out by the ever present traffic noises.

Yesterday, with a group of fellow survivor friends, we did the Bubble Run (we walked the 5km). It was a little crazy actually. We had planned on walking along the shoreline and going to lunch to celebrate the end of a 6-month renewal program we attended. Instead we all signed up for the bubble run and had a crazy time walking through colored bubbles. Seemed appropriate in many ways.

Today, this is my ‘ordinary world’ …