Wednesday, 4 January 2017

The intergluteal cleft

The return of the peach emoji

The holidays were pretty rough.

I finished my second cycle of chemotherapy on Friday, December 23, just in time for Christmas, and my last radiation treatment on Tuesday, December 27. I had to return for one radiation treatment after Christmas to make up for a missed treatment due to equipment maintenance.

I tolerated both cycles of the chemo very well. After my last day of chemo they painlessly pulled out the PICC Line. I was looking forward to having my first shower in five weeks but they applied two dressings, which I could not get wet. The first dressing came off December 24 and the second dressing came off Christmas day … then I got to shower … aaahhhhh!

It was the radiation that made life difficult.

Over the Christmas weekend the radiation burns became extremely painful and by Tuesday I dreaded returning for the last treatment. The pelvis burns started out as red in the third week but over Christmas the redness became a deep burgundy, the skin blistered and then began to peel.

The same things were going on in the intergluteal cleft, aka the “butt crack”, my massage therapist taught me the proper medical terminology, however in this case I was also having issues with bowel movements and diarrhea. I was taking Imodium daily to control my bowel movements and in turn the pain associated with going to the bathroom.

On the morning, of my last radiation treatment I wanted to check something quickly on the computer. I wasn’t dressed yet and I didn’t want to sit on the rough fabric of our desk chair so I laid down a bed sheet folded many times over for extra padding and comfort. When I stood up ten minutes later the bed sheet came with me. The sheet was stuck to the seeping mucous and scabs in my intergluteal cleft … ASS CRACK!

In the other room, my husband, Bruce, had no idea what was happening. I screamed in agony as I pulled on the sheet ripping the scabs from my ASS CRACK like a kid trying to get his tongue off a metal post in the deep cold of winter.

Holy F*^&$#G $h|#!!!!

So, after my last radiation treatment, tender and traumatized, I visited the walk-in Radiation Nursing Clinic and had them do a skin assessment. I was pretty sure everything was normal for having just had 25 daily radiation treatments without a break but I wanted a professional opinion and I certainly didn’t want a repeat of earlier that morning.

The nurse congratulated me and told me my skin looked pretty good, it could have been a lot worse, and she said that I must have been taking good care of my skin throughout the treatment.

The nurse gave me some suggestions on how to improve what I was doing. She taught me a way to apply dressings to my pelvis and provided special padded gauze with anti-adhesive protection for my derriere. YEAH!

I have to continue applying the dressings for 2 ½ weeks. It makes it difficult to go to the toilet but the dressings keep all of the lotions and potions in place and prevent my skin from rubbing against my clothes … and my intergluteal cleft from accidentally sticking to something.

By New Year's Eve I was already starting to see some improvement and my skin is getting better each day.

I planned to return to work on January 16 … I secretly hoped that I would surprise everyone and return a week earlier but given all of the self-care I need to do; taking baths and applying dressings twice a day, and the difficulties I continue to have with going to the toilet, and the constant itching as things heal, it is best that I focus on the healing and not try to be the super hero I think I am. I will most likely return to work Jan.16.

Saturday, 24 December 2016

Love, valour, compassion

I am almost there. The final week of radiation and chemotherapy is behind me, albeit I have one make-up radiation treatment next week before I am truly finished.

In the spirit of the holy days of Christmas, Hanukah and other mid-winter celebrations of faith I am not going to talk about myself.

I have run out of ways to describe the awful burns, the itching, the pain, and the changes to my bowel and bladder functions … besides you have probably read enough about that for now. Although, the one thing I recently learned is that, much like sunburn, it will get worse before it gets better.

I am going to dedicate this blog entry to the patients and care givers and some of the happier and tender moments I have experienced during my visits to Princess Margaret Cancer Centre (PMCC).


Love

The Samuel Radiation Centre at PMCC on level B2 is at the bottom of an eight-floor atrium.

The dedication sign for the radiation centre stands in the middle of a rock garden at the foot of a sweeping staircase which circles down from the ground floor. The light from the translucent skylight above the atrium doesn't really reach the depths of the radiation centre and the rocks and pebbles are forever a dull shade of grey.

In one corner of the waiting room are the reception desk for radiation units 9-18 (I’ve never figured out where units 1-8 and 19 are) and The Joey and Toby Tanenbaum Nursing Clinic. The walk-in nursing clinic is available to help patients manage the side effects 
of their radiation treatment that arise between their weekly doctor’s visits.

In another corner is a television mounted to the wall permanently broadcasting CP24, a local around-the-clock news, weather, traffic and sports channel. God knows cancer patients and their caregivers need to hear about the latest developments in Syria or US president-elect, Donald Trump’s most recent tweets … cancer isn't depressing enough.

A stainless steel water fountain with a sign that kindly asks, “Please do not spit into the fountain” ... in six languages, occupies the third corner. The sweeping staircase begins and ends in the fourth corner.

The only way from here is up.

The centre of the waiting room is filled with clusters of brown leather club chairs, thirty to be exact, I counted them one day, and three matching leather patient comfort chairs, “generously donated from the proceeds of the Gentle Ben Charity Challenge. In honour of Peter McKendrick.” A few scattered coffee tables with half-finished jigsaw puzzles float among the chairs.

The seats are usually full. The comfort chairs are always full.

On one of my early visits, during my first week of radiation treatment, an older couple, a man and a woman in their late sixties or early seventies, occupied two of the comfort chairs. The woman was swaddled in a blanket, resting beneath the unsympathetic lights. Her husband, I imagine, quietly texted or wrote an email on his phone.

The woman woke and weakly spoke to her husband. He passed a paper cup of ice chips for her to suck and crunch on. Hydration is an important part of treatment, chemotherapy can affect ones interest in food and drink and in some cancers, such as head and neck cancer, radiation can affect persons ability to swallow – ice chips help.

She faintly spoke again and he leaned in to listen. Then he stood up, rounded the rock garden and ascended the staircase circling out of view.

She slept.

Her husband returned fifteen minutes later with a wheelchair and positioned it opposite the comfort chair. He lightly and firmly touched her shoulder.

She awoke.

After a quiet exchange he crouched before her, to be honest it was more of a half-stoop half-hunch, and he reached his arms under hers and clasped his hands behind her back, she reached up and wrapped her arms around his neck and slowly they stood … together.

They stopped.

Time stopped.

They just stood there. Embracing. Dancing without moving. Holding onto each other.

Holding onto that time and place where pain goes away and all there is left is love.

I felt like a voyeur, wanting to watch but not wanting to stare and privileged to witness this cherished moment.

Then they slowly shuffled, spiraling one hundred and eighty degrees, where he eased his wife into the waiting wheelchair.

He pushed the wheelchair across the room to one of the leather club chairs where they performed their intimate dance in reverse. Once settled in her new chair she set to work on the unfinished jigsaw puzzle.


Valour

My first visit to the Geoffrey Conway Chemotherapy Centre at PMCC was extremely eventful.

The outpatient chemotherapy and transfusion is on the fourth floor of PMCC. I took the stairs as often as possible, I am an admitted over-achiever. Four floors up from the ground … six if I am coming from a radiation treatment on B2. By my fifth week of treatment climbing the stairs left me out of breath, so I forced to ride the glass elevators through the atrium upwards towards the skylight. Sometimes I think about Charlie, Grandpa and Willy Wonka crashing through the glass ceiling.

The waiting room in the chemotherapy centre is divided into two sections by a grey stone wall each with its own hearth and electric fireplace.

One room is furnished with padded leather benches along the wall that are just a little too slippery to be comfortable, fifty or so (these I haven't counted) standard waiting room chairs and a wall-mounted television permanently tuned to CP24.

On the other side of the wall, some more slippery benches, a few chairs, some cafĂ© tables, a microwave, a sink, a cold water and ice machine and, of course, another wall-mounted television also permanently tuned to … CP24.

On the hearth is a large basket of wool and knitting needles for patients to knit squares that can be stitched together to make an afghan when enough pieces have been completed. At the end of the reception counter are ballots for a free draw for the most recently finished afghan, navy and red.

Upon arriving at reception patients take a number much like they would at the butcher’s or baker’s. When the number is called you exchange your ticket and OHIP card for a restaurant-style pager. When the pager buzzes and flashes you return the pager to the receptionist and you are told where to go for your treatment.

There are a total of 81 treatment beds and chairs divided among five colour coded treatment units, purple 5, orange 26, red 79 and so on. Some chairs are private and others are arranged in u-shaped groups of eight to ten. Each coloured unit is equipped with a microwave, a small fridge, and a cold water and ice machine.

My first day in the chemotherapy outpatient clinic was the same day I had my PICC line inserted. I had some problems with bleeding while in the fitting room at Winners trying on some shirts. I panicked, a little, at the sight of the blood running down my arm and quickly rushed back to the hospital. The doctor who performed the procedure forgot to tell me, or I was too distracted hear, not to lift anything heavy for a week. When I showed up for my first chemotherapy appointment I was quickly triaged to the front of the line so that they could stop the bleeding, clean me up and change the dressing.

While sitting in my chair, orange 19, wondering what was in store for the five weeks that lay ahead of me I heard it for the first time. It rang loud and everyone in the orange unit stopped to applaud.

The Bravery Bell.

Mounted to the wall beside the nursing station is a medium-sized brass bell, much like the one on the wall of the Rovers Return on the British TV soap opera Coronation Street, that patrons ring when they are celebrating a special occasion and want to buy the pub a round of drinks.

The bell hangs silent most of the time and rings, not when someone is buying a round of drinks but when someone has reached their last day of chemotherapy treatment.

A couple of days ago I was sitting in one of the leather club chairs on B2 waiting for my daily dose of radiation, my bladder prepped and ready to explode, when I heard the bell echo throughout the eight-floor atrium followed by a short round of applause for the entire hospital to hear.

When I rang my bell after my last chemotherapy treatment on December 23rd  I made sure that everyone me heard too.


Compassion

I was having a lousy day.

My chemo IV bag and pump and umpteen trips to the washroom to pee made for a terrible sleep the night before … I’m supposed to stay hydrated and all that fluid from the IV and drinking makes me pee more often.

The best part of my day was those few minutes of sleepy limbo, when I first woke up, when I just lay in bed peacefully and pain free and the enveloping duvet was comforting. That was until my bowels clicked in and I did five-metre dash, or rather five-meter urgent waddle, to the bathroom 
before the diarrhea exploded through its painful terminus.

Although, I plugged myself up with two Imodium, my routine walk to PMCC was interrupted with frequent searches for unoccupied public toilets to relieve my bladder of my increased hydration.

I always try to have a somewhat cheery outlook, there’s enough sadness at PMCC, I don’t want to add to it, but when I arrived at the hospital I was tired, exhausted, stressed, painfully uncomfortable and unhappy. Things were not going well that day.

That's when I met Dick.

Dick is not his real name; it's more of a description of his personality. It’s a politer version of Asshole.

Dick was also having a bad day. Lot’s of people at PMCC have bad days. There are a lot of people dealing with the physical and emotional effects of a cancer diagnosis and treatment.

I could forgive Dick if he was a patient but Dick was an employee.

Dick was being curt, insolent, dismissive, and … well … a DICK!

I lost it.

“Excuse me …” I said, “ I’m sorry … you seem to be having a really bad day and, don’t get me wrong, I get it, we all have them from time to time. The problem is I am pretty sure that my day, and that of many other patients, is worse than yours. You have a job to do and you are going to be a part of many people's lives today. They are counting on you. If you can't do that with at least an attempt at being pleasant and maybe a smile maybe you should take a break or go home for the day.”

Dick looked at me blankly, like a deer caught in the headlights. Then his facial muscles relaxed, his shoulders dropped a little and his face melted.

That’s how I imagined it.

I had prepared and rehearsed my little soapbox speech for when I ran into a staff person having a bad day.

It never happened.

I feel like an actor who skipped a page of script and missed his big monologue.

Every fucking staff member from the receptionists to the nurses, from the doctors to the radiation technicians, to the volunteers who roam the corridors and waiting rooms with carts of juice, biscuits, and knitted hats for patients who have lost or are losing their hair, have been unbearably pleasant.

I swear that the hospital has a private employee entrance that staff and volunteers pass through, something akin to airport security, where they are screened for negativity before the start of their shift. Those that fail are given some sort of magic pill to clear away their dreary clouds and showered with sunshine, rainbows and unicorns.

I have not met a single PMCC staff member or volunteer having a bad day.

They are always positive, checking in with me, asking about my side effects, offering their suggestions for skin care, nausea or fatigue. They will ask again on the next visit and if things aren’t improving they will make a referral to the nursing clinic or doctor for a prescription.

They put aside their own lives and focus 100% on me … or whichever patient is the focus of their attention at the time.

They are chameleons. If I am cheerful they are cheerful. If I am tired and my eyes are closed they speak softly and offer comfort. If I make a bad joke about cancer or my treatment … some of them have their own bad jokes about the same thing.

I have fallen in love with these people.

Without them I don’t know if I could have got through this as bravely as I did.


It is going to be very hard to say goodbye next week. They have meant so much to me.

Friday, 23 December 2016

Please stand by


This has been a difficult week. I am behind in my blog but I promise one is coming in the next 24 hours and you will not want to miss it. 
Stay tuned.
I have been back on chemo this week and with the accumulated effects of four weeks of radiation I am more fatigued and a little more nauseous than the first cycle. Today is my last day of chemo and I get the PICC line out. Finally, I can have a shower.
I have two treatments of radiation left, today and next Tuesday. I was told earlier this week that much like a sunburn the side-effects of the radiation would get worse before they go better ... they weren't lying!!!
The burns are painful and a dark dark red, almost brown, and they seem to get redder every day. Bowel movements are painful. I take Imodium like candy to ease the pain during bowel moments and Tylenol 3 at bedtime so that I can fall asleep. The chemo wakes me up half a dozen times through the night so I can pee. 
In two or three weeks this will all be behind me (no pun intended) but for now ... well, let's just say I wouldn't wish this on my worst enemy.
But please, watch for tomorrow's blog, Love, Valour, Compassion. I am putting the finishing touches on it and I am really proud of how it is coming together.

Thursday, 15 December 2016

That “other” emoji

I know. I haven't posted in a week. I've fallen a little behind. The side effects have gotten more intense, ugly and sometimes, unfortunately, messy.

I'm still walking to and from the hospital each day. Thankfully, I invested in a nice warm coat last winter. I do not like absolutely hate the cold and my Moose Knuckles (Stirling Parka) is doing a great job keeping me toasty on my long walks.

As far as side effects ... well let's just say things have deteriorated. The radiation burns have gotten a lot worse. In some cases the red burnt skin has broken and is peeling or flaking.

There are some skin discolorations, brown spots the size of a Canadian loonie (one dollar coin). These skin changes may or may not be permanent.

The pubic hair to the left and right above my genitals has fallen out, leaving a strip of hair down the middle. I was describing this to my mother-in-law and she said I had a “mohawk” … she always sees the positive. I on the other hand see bald spots.

At times bowel movements come on very suddenly and the diarrhea is endless and painful and, on occasions, messy.  A few days ago I rushed to the bathroom and flipped up the toilet lid with such force and urgency that it bounced and fell back down onto the seat.  I won’t get too descriptive but all I could do was let it happen … and it was the biggest shit I have had in a long time.

I felt un-human. I lost the ability to control my own bodily functions. Urgent bowel movements. Urgent needs to urinate. Rightly, or wrongly, I associate these control problems with the beginning of life and the end of life. Infants and the elderly.

I was getting scared to leave the house and I didn’t know how I was going to make it to my appointments.  My super-duper-warm Moose Knuckles coat became a burden … I would never be able to get out of it fast enough if I had a sudden need to use a toilet.

So I broke down.  I take a lot of meds to manage my HIV and I am reluctant to take anything that I don’t need. I’ll suffer a headache instead of taking Tylenol and I only take Imodium when travelling – even then I tough it out at first.

I’m no longer toughing this out. I take Imodium as a prophylaxis every morning now.

I had my weekly appointment with the radiation oncologist on Wednesday and he prescribed Flamazine, a topical anti-bacterial cream for the burns (a great product name for a cream used on burns) to use before I apply the barrier cream and Tylenol 3 to manage the pain. I wondered why it wasn't prescribed earlier and my guess is that if they prescribe it too early then they have nothing to prescribe when it the side effects get worse.

My radiation oncologist said that all of side effects are, as he would expect after three weeks of radiation. Nothing unusual.

My radiation oncologist also said that head and neck cancer patients have the worst experiences during treatment … and anal cancer patients come in at a close second and I am handling it very well.

I also had my blood work done earlier this week in preparation for the second cycle of chemotherapy next week. They need to check the neutrophils, white blood cells that are an essential part of the immune system, to make sure my body is healthy enough to tolerate the chemo. If the neutrophils are too low, there is a risk of neutropenia and a decreased ability to fight infections such as bacteria, fungus and yeast. My neutrophil counts are below what is normal for a healthy person, which is expected at this point in my treatment, but they are strong enough to proceed with the chemotherapy on Monday.

Next week will probably be the worst.

The radiation side effects are cumulative, but I now have some lotions, potions and pills to deal with most of the side effects. The addition of the chemo will have its own issues but I tolerated the chemo quite well during the first week and there shouldn’t be much difference the second time.  The only thing that may change is the fatigue … I may be more tired this time around since my body has already been through four weeks of treatment.

Thankfully, I have all my Christmas shopping done.


References

Moose Knuckles (Stirling Parka)
Moose Knuckles Canada

Flamazine
MedBroadcast

Neutropenia
Cancer.net

Tuesday, 6 December 2016

Closed for maintenance


Radiation treatment cancelled today!

From time to time radiation units need maintenance. 

I asked if I could have treatment in one of the many other units but all the other units are fully booked.


Sadly this means that instead of finishing treatment before Christmas on December 23 as planned ... I have to make up the missed treatment on December 27.

Monday, 5 December 2016

The “Burning Ring of Fire”


I’d really like to know who creates the music playlists that I listen too during my radiation treatments because I have a little laugh each time Johnny Cash’s “Burning Ring of Fire” cycles through.

In my previous post (Mannekan Pis) I wrote about how the chemo and preparing for my radiation treatments were affecting my bladder. It’s only fair that I give some attention to what’s happening on the other side.

It has become my own burning ring of fire.

I’m not much for holding back … so be warned … reading below the video is a little … intimate.


Overall, the side effects have been mild … until now.

As the cumulative effects of the radiation start to take their toll things down there are getting uncomfortable.

The first thing that I noticed was redness and itching in the skin folds between my thighs and my genitals. At first I thought this was due to poor hygiene during the first week of treatment, I couldn’t have a shower that week and I was limited to sponge baths from our bathroom sink. However, after two weeks of radiation treatments the area has become more irritated and the itching … at times burning, is now persistent.

On the other end, my anus is constantly itchy.

I have stopped using toilet paper; it’s too rough. I tried using baby wipes but discovered that they contained citric acid and were too painful. I am now rinsing with a squeeze bottle of warm water, the same bottle that new mothers use after delivery (I am finding a lot of similarities to pregnancy with all of this) and using moistened and dry gauze pads to pat myself clean.

I do get temporary relief from both irritations by soaking in a bath of warm water and baking soda for 15 minutes. I usually settle in with my Kindle and read a chapter of my current book being careful not to drop it in the tub.

There are also changes to my bowel movements.

I dread having to go to the toilet.

Being HIV+ I am treated with a lot of medication and I frequently experience diarrhoea. The radiation makes the diarrhoea even worse. Compounded with the raw burning sensation of my anus, bowel movements have become painful. I apply barrier cream, a thick water-based ointment, which offers some protection for the skin from the effects of diarrhoea and incontinence.

I also dread leaving the house.

As if diarrhoea isn’t enough to worry about another side effect is fecal urgency, the sudden urge to have a bowel movement … right now!

I have been maintaining my exercise by walking the six kilometres to and from the hospital each day. Last week, during two of my walks, I had two very close calls where I didn’t think I was going to make it to a public toilet fast enough. I have now altered my route so that I no longer walk through quiet residential neighbourhoods but along streets with accessibility to public washrooms.

There is also the issue of having to maintain a full bladder for an hour before my radiation treatment.

Have you ever noticed that when you have a bowel movement you also urinate?

Imagine if you will, a sudden urge to have a bowel movement, panicking to locate and get to the nearest toilet and halfway through the bowel movement realizing that you are also peeing … and trying to stop the flow or urine.

In one of these episodes I burst a blood vessel in my urinary tract. I didn’t realize it at the time, all I knew was that there was blood in my urine … I was peeing red. I was a bit freaked out by the whole thing and when I arrived at Princess Margaret Cancer Centre I checked myself into the walk-in Radiation Nursing Clinic.

In addition to some urine tests to make sure everything is okay the nurse recommended that I take Imodium regularly. Because of all the HIV medications I take I am reluctant to ingest other medications unnecessarily.  I resist taking things for headaches unless they get really bad.  The nurse was very frank when she said, “Well, you have a choice, Imodium or an accident in the street.” I got it.

She also offered me a diaper to get myself home … just in case.

I drew the line.