The day after Linda's mother's death, we are seated on an early morning GO Train rushing into the heart of the City. Neither of us had slept well the night before and we felt as if we'd been hit by a Mack truck then knocked onto the track of a freight train. Only, perhaps, not quite as good as that.
However, after a month of delays in getting started on my treatment for a very aggressive esophageal cancer, we couldn't risk anything that would cause a further delay. Like postponing today's planning session with our medical and radiation oncologists.
And so we struggled to stay awake as the train carried us away from the fields and green lawns of the suburbs and into the gray depths of towering office buildings. Finally the train slowed as it approached Union Station. The Station had been built by my great grandfather William. Well, not all by himself, but he was one of the architects who worked on its design. So I feel a kind of personal connection to the building.
Our first appointment is with the perky little radiation oncologist who confirmed that my treatment would be beginning this coming Tuesday. She is very pleased with the plan for radiation that she has developed which will be very targeted and minimize the chance of accidentally radiating my lungs. Which, I'm informed, is something I really don't want to happen. Radiation will take an hour and be conducted five days a week over a five week period. I will be in considerable pain by the end and she warned me not to try toughing the pain out. Tell her when it starts to hurt because it will only get worse and she has some very effective medications that will help.
Then we're off to see our medical oncologist. We book in with her receptionist and sit in front of a large screen TV to wait our turn. The News is filled with stories of automobile crashes and victims being rushed to hospital with no vital signs.
A woman in a white coat who is not our oncologist calls our name and proceeds us to an examining room. We follow her wearily. She asks how I'm feeling and I tell her I've had better days. "Harmuph," she says dismissively, as she leads us into the room. "Wait here," she says, leaving through a back door.
"Who was that?" Linda asks. But I have no idea. So we wait. Half an hour goes by.
"Have they forgotten us?" Linda asks.
We can hear muffled voices in discussion behind the rear door of the room. Another fifteen minutes goes by.
Then our oncologist rushes in with apologies. She has been in last minute discussions with the pathologist about my bone marrow diagnosis and is worried because, while the pathologist is convinced I have a low level lymphoma in addition to my esophageal cancer, he was unable to make a definitive diagnosis.
There is a very wide range of bone marrow disorders and they haven't narrowed it down to a specific disease. I will have to have another bone marrow aspiration on top of chemo and radiation next Wednesday and have it examined by a Hematological oncologist. She apologizes in advance and assures me this won't in anyway delay the start of treatment.
She tunes into Linda's fatigue and I explain about Linda's mother's passing away last night. She offers her condolences and then rushes off to get us a treatment schedule.
Time passes.
The "Harmuph" lady sticks her head in the back door and tells us she is sorry. "Not," she tells us, "Sorry for keeping us waiting, but for Linda's loss."
And then she is gone.
"Who is that?" Linda asks again.
Ten minutes later the scary "Harumph Lady" is back, with papers in her hand. Our oncologist has asked her to review my treatment schedule with us. She sits at the table beside me and begins writing in the Notes section at the back of a pamphlet. She looks up at me as she's writing, her face very close to mine. Her eyes boring into mine. There are things I am going to have to do, and I'm going to have to do them right or I'll be in trouble with her, she tells me. I am a very sick man and chemo is a very serious business. If I don't pay attention and do everything she says I could die.
Chemo attacks the rapidly growing cells of the body and the most rapidly growing body cells are in the filthiest place in the body, the human mouth. "So you are going to pay special attention to keeping your mouth clean. Brush your teeth for a minute or two after every meal, floss and rinse with bicarbonate of soda. On top of that you will buy a large bottle of Club Soda and rinse your mouth with it every time you go pee throughout the day."
Her scary eyes peer deep into my soul from ten inches away. And, she tells me, I will wash my hand thoroughly before I pee and immediately after I pee. She searches my soul for any sign of disagreement. After her search she is not convinced but decides not to press the issue further.
And if I have any sign of a fever over 38C I will go to my local Emergency department immediately and tell them I'm receiving chemo. I will do this immediately or I will die. She stares at me intently to ensure I know what dying means. Evidently I do and she turns her attention to Linda. "But," she tells Linda, "You will not pester this man by taking his temperature every half hour. Do you understand?"
The lady is scaring the crap out of us so, of course, she next turns to poop. She is giving me a prescription for a stool softener and for a laxative. She likes people to be a little bit loose, during chemo and gives precise directions for what pills to take on what days under what conditions. And writes them in her book.
And if I have any trouble of any kind I am to call her immediately or go immediately to Emergency. She writes her name and phone number on the list.
Okay, we're done, she tells us and leaves through the back door. The minute she's gone, we hear a bunch of people yelling "Surprise!" and bursting out into singing "Happy Birthday!" to her.
"Who was that?" Linda asks again.
I look at her name and tell Linda who turns pale. "I know her," she tells me. "I grew up with her. We went through school together. Our parents built Iondale United Church together."
"You know the scary doctor?" I ask in amazement.
"Heidi," Linda tells me. "I haven't seen her in forty years. But it's Heidi!"
We stop at the desk as we're leaving and ask to speak with the scary doctor again. She comes out with an embarrassed look. "You probably heard the singing," she says. "It's my sixtieth birthday today."
Linda tells Heidi her maiden name and mentions Iondale and suddenly Linda is hugging the scary doctor and suddenly the two of them are lost in discussions of old times.
And the scary doctor is not quite so scary anymore.
***********************************************************
I took a batch of pictures for the Friday Shootout and it is a shame to waste them. I will be receiving radiation treatment every day for five weeks and chemo everyday for the first and last weeks of that schedule, so I may not get in many more Friday shootouts for a while.
The theme this week was open so I chose "Public Art" and here is a little slide show of what I came up with.

40 comments:
There are advantages to having an 'in' with the doctor. Aren't you lucky for that? Sounds like they are detailed oriented and that is important as well. The first step has been taken and you can sigh with a little relief...you have my permission.
Oh my goodness, I am scared to death, and I wasn't even there!!!!
So glad to hear your treatment will finally, finally commence.
You are in my thoughts.
Many hugs.
Renate
Barry - you have the best ability to make me laugh even while I'm cringing at all of the things you will have to do. It's not enough that you're going to have this treatment & eventually be in pain - now you have a peeing protocol! Sheesh!
What a rollercoaster you both are on! Take it easy, even though things will be frantic for a little time, I guess, considering what has happened.
Love to you both, and a special pooch smooch, for THE GIRL. xxx
Oh! The art was amazing, what a cool way to present it. :D
I never knew all that about keeping your mouth clean!
Somehow the name Heidi itself disarms the scary doctor.
good finally the ball is rolling - we will all take a collective breath. your photo slide show was really great - public art is a good shoot out on its own... hugs and kisses to you both from Houston
Well dear Barry THAT just confirms it!!! YOU (and Lindie Loo) are definitely on a journey guided by ~Angels~ X:-) and by golly don't be too scared by all the 'small print', because it's also a doctors job to let you know all the bad stuff, JUST in case! (Hippocratic oath stuff and all!)... Just think ok well that's just the worst case scenario and i don't intend to go there! (That's what i did/do) It's always good to know 'stuff' intellectually but don't let it be what sits in your heart because you'll find that everyone is different even when they are dealing with the very same illness... Just look at me and Kylie (Minogue!)very same cancer, different roads... (((Hugs))) to you both xox
Wow Barry, here you go....mum does a wash 4 times a day with salt and bi carb....seems to work...and golden seal ointment helps if your lip bleeds....good luck with it. Don't be a hero either, rest as much as you can.
love to you
xxxx
Heidi the scary doctor is 60 this year which makes her as old as me. So yes, we went all the way through school together and she remembered my mom. Her dad is still around and he has always been an Elder at our church. They are a kind, sweet family. Heidi has three brothers named after the gospels. We wished her a Happy Birthday as we went home and she was off to check on Barry's next marrow test.
I liked the art pieces you chose Barry. I love the wall paintings around the community and I have always liked that round bear rock sculpture. Nice video. xo
What a rollercoaster you two are on! I am so sorry for the loss of Linda's mother and am sending all my best wishes your way.
It's with mixed feelings that I read your blog. A priviledge to know so much and also scary to know what you're up against.
All the best!
Glad to hear the scary doctor turned out to be not so scary after all. Big hugs. Hang in there, Barry. ~x~
What a story...you had me with every in and out...finding something that makes you smile puts a nice end to the scary part...Tabor is right...take a good sigh, and lots of beautiful walks in that place you have shared with us before...we are off to the pine barrens foot in cast and all...thanks for the art, and I love the Indian music...so soothing...
When you're dealing with someone who has been diagnosed with cancer, you shouldn't be scary. When you're telling someone about chemo, you shouldn't threaten them with death.
Especially on your sixtieth birthday, you should be kind, compassionate, and encouraging.
I don't care how well Linda knew her - I don't like her and I abhor her approach. Like you needed that! Sheesh.
Wow, club soda every time you pee? well, I guess that's not too bad....can you add cranberry juice to it? That would actually be enjoyable...if it weren't for the fact that you'd have to drink it in the bathroom.
I am praying for you every day to get through this quickly with no problems. Have a good weekend, my condolences still to you and your family over Linda's mom.
Hugs,
Meg
Barry, I wanted to send you a little something to have while you are in your treatments, if you would like to give me your address, you can email me at meg (at) littlestudio (dot) ca. It's just little, but might give you a little smile :)
Take care,
Meg
What an exhausting and surreal visit to the doctor(s). Jeesh!
Just follow all the doctor's orders - it's nice that she's an old friend. That should make this journey a bit smoother.
I'm rooting for you Barry.
Glad Dr. Scary isn't so scary after all. Keeping +++ thoughts and prayers for you.
You do these slide shows so well that it makes me jealous. I missed some of the slides though because the music kept reminding me of our trip to Arizona and an Indian guide playing the flute for us in Monument Valley. It was magical.
All the best in the next five weeks. You'll get through it.
Hi Barry! loved the art display. random was very fun to do wasn't it.
My radiations only took a few minutes each day. Heads up on the mouth, it will get very tender and sore. Buy a nice soft toothbrush. By the sounds of it, your scary dr. needs a lesson in bedside manner. funny that Linda and the scary dr. are school chums.
hang in there and I am throwing much strength and faith your way.
Barry, I'm so sorry that you and Linda have to go through this. Y'all are in my prayers.
Your photos are wonderful... I enjoyed the slide show.
As always you impress me with your grace and humor. I am glad you're not alone on your path.
Barry,
I am sorry that you and Linda have to go through all this at the same time.
It is scary stuff.
Daria
Barry, your sense of humor is so entertaining! What a fantastic perspective you have! As always I am sending positive thoughts and prayers for your healing.
and so the journey begins...this is very good news.
I have your back Barry, right behind you, whispering encouragement and holding you up on the harder days, and cracking jokes and taking walks with you on the good days.
Love to you and Linda
xxm
It's true, sometimes things ARE scarier than hitting a Mack truck. Since I recently DID have a head on collision with one, I have realized there are much worse things in life than that, and some people qualify :)
You scared me reading this story. I am so sorry that you are having such a time. Yall are both brave and I will keep you in my thoughts and prayers.
Let's hope the cancer is like the scary lady and ends up being nothing to be scared about :)
I shouldn't be joking at this serious matter, but a club soda after every pee. That's doesn't sound too bad at all.
Seriously, it is great that your doc is an old friend. She is bound to take good care of you.
Otherwise, I hate all the hospital waits. I always wonder why they don't schedule us 1/2 hour behind when we have to wait more than that.
Thinking of you.
Ann :)
oh Barry, I love your blog. You are such a good writer and I giggled throughout this one! So glad you are starting treatment and it won't be nice BUT remember that its your best friend! As someone who is half way through chemo I would say, don't suffer, don't be in discomfort, they can help. I have been having chemo since 20th March and so far (touch wood) I have been fine. As for mouth hygiene (I have just had braces removed) I do get sores in my mouth after chemo but I use corsodil and salt water. I don't over brush cos that in itself can cause sores. Put your toothbrush under hot water to soften the bristles and clean gently, dont scrub your teeth, hold your brush as though it is made of china.
Wonderful slide show. And a really great description of your scary doctor stay! There really are an amazing diversity of people we see in hospitals...and the reason we are usually there gives us such clarity of concentration on them.
Dear Barry and Linda I feel blessed to share your story. You are such a brilliant writer and photographer. Don't ever worry about responding to me. Just know my prayers go your way and most MDs and Rns who work with you will also pray for you and with you if need be.
QMM
I always have a hard time understanding oncologist......I suppose it is because of the job they have to do that makes them seem the way they are. I couldn't imagine doing their job. But, at least there is a plan in place now and I have to tell you......they way that you always find the bright side of each situation is the attitude of a person who will triumph!!
I loved your art shots Barry.....what a true blue gangster you are my friend!! I told Linda, you two are our only "gang couple" :)
Rest dear friend......rest and relax and focus on wellness.
We all love you. We love you, Linda and of course our "gang dog" Lindsey.....
Steady On
Reggie Girl
I guess you know who the scary doctor is now! You make me laugh.
How interesting the day started with the connection to the station on your side, and ended with your wife's connection to the doc who would be "traveling inside" your body....
Love the photos - I wanted to join in on friday shoot out and emailed all excited about it and then was slammed and didn't get to join in yet - I hope they forgive me until I can join in....
Please tell them when you first begin to be in pain - I don't want to think about you in pain....
My goodness, what an experience. You have an art of making it all colorful and entertaining... how do you stay so calm and tolerant? I'd have chewed myself through from the inside out already. I am amazed and inspired by your lack of crabbiness throughout. You have every reason to be, and yet, you write beautiful posts about taking each step, each day as it comes. That is a miracle in my book, and probably the most healing and healthy instinct you could have. Sending you and your wife a GIANT, warm hug. One of many....
You are such a generous man - this doctor isn't scary, she is rude and unprofessional. There is absolutely no need for that kind of attitude to patients. I feel so angry that any health care professional should think that this is acceptable behaviour. Phew, rant over - take care Barry and love to you both from this side of the pondxx
Oh, Barry, I am so far behind that I missed out on so much. I am so sorry about Linda's mother. Give Linda a hug for me.
I guess you start your chemo today. It has been a long time coming, and I know you are happy (if one can use that word and chemo in the same sentence) to finally get something moving along. The sooner you get treatment, the sooner you will be well again.
Take care of yourself, Barry. We are all pulling for you.
"You be well."
You're incredible, Barry. You and Linda. and I'm so glad to know you even from far away. My heart is with you!
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