The White Room

My favorite thing (or How I became girly..)

2006-06-30T09:03:00.000-07:00

The other day, on one of my hectic downtown lunch breaks, I stood at the drug store counter in a lovely Eileen Fisher dress and heels and found myself staring at the cover of the June IN STYLE. And it all came flashing back...

8pm in the hospital. I wait for my visitors to leave, pat my arm, check my stash of gum and jello, sing see you tomorrow cheerily over their shoulder. I waggle my fingers at them and smile. The stale metalic taste of chemo and Zofran heavy in my mouth and my sinuses. I have been waiting for 8pm. for the peace and the euphoria that will soon come. I have timed it. My med schedule is every four hours. My last morphine dose was at 4pm. At 4pm, I had to interact, try to eat, try to pull off some sort of conversation. Now, I can just rest. Let myself slip into the narcotic haze that hits around 8:20pm...

And I open my drawer and pull out a magazine. (My favorite is IN STYLE, but any fashion or scene mag will do. IN STYLE and ELLE are the biggest and have the best articles [yes, articles].) And I get lost. I slip into the slippery pages of banality and beauty and cleverness and swim in my morphined state through pages of beaded necklaces and what to buy your best friend for under $50.00. I get lost for hours in a perfect, hazy peace where for once, I seem to forget the nausea and the pain and exist in a world of strappy sandals and desert rose lip gloss. I lie there, so weak that somedays I have to prop my magazine up with the bed table, and I dream of the days when I will shave my legs and rub them with glamour girl shimmer cream and slip on a pair of strappy sandals that perfectly matched my handbag, and then set out to lunch on a patio where my hair needs to be pulled back because of the breeze.

Scare

2006-06-30T08:44:00.000-07:00

Thursday March 30, 2005
C___ Plaza Imaging Centre. 10:30 am. Waiting Room.

Shit Shit Shit Shit Shit Shit.
I know it is going to be fine. I'm superstitious enough to know that I have worried so much so it won't happen.

These things always seem to happen when I don't expect them. Still, there is this little fear that they will find something-something different. I am not worried about the tumor growing again. I believe we can deal with that before it ever gets as bad as it was.

I am worried that this is something new. Something scary that I haven't been expecting. I am so scared about being sick again. I don't want to be sick. Things are just starting to look up.

Maybe it came back because R and I hadn't learned out lessons yet.

Maybe it has gone away because of all the progress we made yesterday.

I think in some ways I have been wanting it to be something-just to prove I am right-that old feeling that I have to prove that I am not a hypochodriac. But as I am sitting here waiting, thinking about what that would mean, I am Terrified. I really don't want to be sick. Please don't let me be
sick.
This is different than other times. I think in some fucked up way I have wanted to be sick, needed the attention, needed the excuse to rest, but that time is finally over.

Please.

My Death

2006-05-24T21:59:00.000-07:00

There was a day, sometime in February 2003,when I thought that I was truly going to die. There have been many days when I confronted the concept of my death, imagined scenarios, played movies in my head. But that day...that day, I just thought I was going to die.

I lost faith in my body. I lost faith in everything. The fear and darkness were so great and I felt totally alone.
I was in Emergency. I am pretty sure that I was in C pod. I remember the room. It had a bathroom to the left of my bed. The room felt so absolutely empty that day. And I can only remember it in black and white. I felt as if I had walked through some door and was in a different dimension. That though I could see and interact with the people, doctors, nurses around me, that I existed somewhere else. That was probably the most terrifying part. I felt, I fucking KNEW that I was going somewhere, that I was not with everyone else.

I was in emerg for pain. I was obstructed once again. I was at a point in treatment when they realized that the "gentle" chemo was not working and I was scheduled for stronger, much harder juice. I just kept getting sicker. My bowel was completely blocked, I felt toxic and full of poison. My blood count was very low.
I remember wondering at how unaware I could be at the dangerous levels of my blood. How my body was just crumbling, shutting down, and that there was nothing I could do about it.
I remember the utter terror and despondance I felt. I tried to hold it together while R and I watched a movie-the worst fucking choice of a movie-Crouching Tiger, Hidden Dragon. I cried the entire time. I was grateful for the distraction but it wasn't enough. I remember feeling like I was falling, like I was helplessly falling down one of those bottomless pits in the Flintstones, and strugling, madly clawing, trying to grab the air and swim my way up to safety. And no one could see me falling. R couldn't see, the nurses couldn't see, Dr. R__ couldn't see. Only I knew I was in trouble.

I remember silently, desperately pleading for help. I clutched at my raw and very recently unpacked spirituality and begged for my angels to help me. If you are really there, Raphael, then please, Help Me. Don't let me die. Please, please hold my hand, be by my side, do SOMETHING to make me seem less alone. That was my biggest fear of death, I think. I was afraid to die alone, was afraid to be alone, was afraid that Death was the ultimate alone. And I felt alone that day. Utterly alone. I felt no angels, no warmth or knowledge of other, just terror and cold.

That day, the day I believed that I was dying, I let go. I let it come. No, actually, that is bullshit. I did not let it come. I fought that fucker all the way. I think I just got tired, worn out. I calmed down and fell asleep. There was no light, no beatific knowing of all things loving, no choral rapture, there was just grey and cold and dispair. Somehow, I made it through that day. And when I woke up in the morning, I felt a little better. That is all. I went through hell and somehow hung on with my eyes closed. And it is the greatest gift I have been given.

Never is too soon

2006-04-17T21:57:00.000-07:00

I fucking hate CTs. I have probably had five or six, all told, and I dread the next. It was all I could do to get through each of them. Not everyone has as much trouble- I seem to hate them more than most. It is the combination of various nasty factors. To start, it is being forced to drink two and a half litres of water tinged with a barium solution. It isn't bad, but it isn't good. It is like drinking that glass of water you have had sitting by your bed for the last week. Mostly, it is the volume that kills me. That is a shit-load of liquid to swallow and hold in your belly at the best of times. In the thick of chemo and bowel obstruction nausea, it is the fifth pit of hell. That and sitting in a plastic chair, fucking freezing my ass off in a wrinkled powder blue nightie with ties, and the men's pants with the crotch tied in front, AND the wrinkled, ass-ugly "housecoat" in a darker pattern of powder blue. It is sitting in a soul-sucking ecrue and dusty rose waiting room with five or six other Cancer patients, trying to keep warm and ignore the obvious over-intimacy of their bare knees and nighties; trying to keep up some pretense of normal conversation with their chaperones or desperately trying to entertain themselves with the hunting and fishing magazine they have on the table next to them.

We all sit. We sit and drink and try to look nonchalant and cheerful. I try to joke with my company as the warm stale liquid sloshes in my already nauseated stomach and as it is denied access to my obstructed bowel. My conversation starts waning as the need to focus increases. I need to concentrate to keep it down. I have a hair trigger gag reflex after a twin pregnancy and numerous rounds of chemo. I can vomit on demand. Breathing too hard can make me puke. So I focus on a point on the wall and step inside of myself. Much like I do with pain. I try to meditate, try to accept the nauseau and the liquid and just let it be.I usually make it to three quarters of what I am supposed to drink (about 2L) and they call my name, and they take one look at me and say it is ok, I don't have to finish.

And the worse is yet to come. In order to see what they have just made me drink, they inject a dye into my blood. I get an IV and then in the CT room they hook me up to an automated IV. I lay in the CT tunnel with my arms above my head, freezing my fucking ass off (because they have to take off all the blankets) and not allowed to move. My arms reach above me around where the IV tubing is attached to the machine that will inject the dye. This is the hell for me. They talk to me over a speaker, hiding in their little room, and tell me that the dye is about to come. I hear the machine whirr and I hear the liquid run down the tube. And I feel the cold dye enter my blood stream. I fucking feel all of it. I feel it enter and move down my arms and down into my core. Within seconds, I feel a warm sensation in my bladder and in my urethra. They warn you of this, that you might feel like you have to pee. No shit bitch, I just drank 2L of stale fucking ass-water. What they don't fucking tell you is that you can feel it happening. That you can feel the chemical, its metalic radioactive fucking warmth travel through your veins and down into your fucking crotch.

They don't tell you that you will smell it, that somehow, you taste and fucking smell the poison as it fills you. It happens so quickly and completely, so much more than chemo even, that I find it terrifying. I feel completely invaded. I lie there feeling the panic rise up in my throat and choke me. I lie there, close my eyes and wait as I pass through the white tunnel and while my body is bombarded with Xrays. It is all I can do to stay calm, pretend that it is going to be ok.
And then it is over. The smell lingers in my mucous membranes and my urethra tingles with residual warmth. I am convulsing with cold and I really have to pee. I wrap myself in a warm blanket and head to the bathroom, swearing never again

Surgery

2004-04-02T14:18:00.000-08:00

At about 3pm in the afternoon, (I don't have a journal entry for this but I am like Rain Man when it comes to remembering treatment dates) I went in for bowel surgery. Almost ten months after my last chemotherapy I ended up in emergency with a partial bowel obstruction and the surgeon was about to take out a section of my jejunum. I had been sick all November and December and my doctors were pretty sure that I had scarring from the Lymphoma in my bowel that was causing partial obstructions and subsequently pain and nausea. However, every time I went for tests, they couldn't find anything. Now, I was obstructed and in pain and they could see the blockage on Xray.

I was excited about the operation. Or at least relieved. I had been struggling for months without answers and I was relieved to have a fix. The only issue was that I was feeling really sick and over-drugged before surgery. This was Thursday. I had had nothing by mouth since Monday, and I had been having Morphine every four hours. I was starting to hallucinate and feel panic. I think that my kidneys were having trouble breaking down the morphine. By the time I was prepped for surgery I was shaking and beside myself with fear. And I was weak. I was so scared that my body was too weak to handle the surgery. I remember laying out by the desk in the Surgery ward, waiting to be taken in. I closed my eyes and tried to meditate. I tried to see my chakras, I tried my yoga breathing, I even just tried digging my fingernails into my hand. Tears were streaming down my face when the surgeon came to talk to me. I think he was surprised at my state. I know I was. This was a routine, almost boring operation for him. But I was in a place where I had lost all my strength. He squeezed my hand and rolled me in.

Steel

2003-10-09T20:21:00.000-07:00

She stood at the yellow marble counter, hot tears running down the lines of her face, the sun blasting in like a nosey neighbor. Green, white veined cabbage leaves lay drying on paper towels.

She was trying to cut a small hole (the size of a nipple) in each torn leaf with her good sewing scissors. They told her the leaves would dry up her breast milk.

She must stop the lifeblood that pulsed from her and fattened her babies. No longer able to see through the clumps of her wet eyelashes, she lay down the scissors, put her hands in her head and wept.

She wept for her twin girl babies, who were not ready to wean from her milk and kept nuzzling and sucking at her neck and bare skin.

She wept for herself and the knowledge that she would never again nurse another child, would never hold a perfect tiny hand and listen to the satisfied moans and grunts of her infants.

She wept in anger at the injustice and the sadistic humor of it all--that one of the most precious experiences in her life was ending violently, forcibly, and left her wearing cold cabbage on her breasts.

(She had fought hard not to snap at the cheery, twenty-something-and-never-felt-the-nail-biting-pain-of-a-good-and-blocked-duct community health nurse. Screw this precious age-old eastern tradition that would so quickly dry up the milk she had worked so hard to make.)

She had been proud of her supply. It had made her feel like she was a woman, that she had a natural capacity to sustain her children, even if they arrived by c-section, would never have made it on their own. The chemo would be poison of course. Her milk tainted with the chemicals that would kill her cells, even the healthy ones.

She had been slowly weaning for weeks, but her first course was to be tomorrow and she had stopped completely over the weekend.

She was sore and engorged, the pain a constant reminder. She could feel hard, tender tracks of wasted milk in her ducts. Her eyes fell on the scissors. She picked them up and felt the cold steel in her shaking hands.

She was so tired. So tired and she hadn't even started fighting yet. She just wanted it out.
She just wanted to jam the scissors in and take out the tumor that had started this all, rip out this thing inside of her that had turned their lives upside down and threatened to end everything.

She gasped and moaned out loud, hobbled by the despair she felt so deep inside her that she felt cavernous. She lifted the scissors to her cheek. The cool hard metal was comforting and solid. A baby stirred and she felt her nipples twinge and her heart flood.

She would make it through this. She would be strong and she would find peace, and she would wear these fucking cabbage leaves.

She put the scissors back in the drawer and went to exchange the warm, wilted leaves for crisp, cold ones.

©Margo Schulte McKinnon, 2003.

Morphine

2002-11-17T21:54:00.000-08:00

The morphine high is a high like no other. I have had many narcotics, many derrivitives. Nothing is the same. It is a fond memory I have. I have odd fond memories from drugs when I was sick. Times when the drug took me somewhere other than pain and sickness.

It must be pushed. Morphine injected sub-cuetaneously hurts like someone has just injected cement into your veins and then followed it up with hydrocholoric acid and a gaping stab wound. It fucking hurts. It hurts enough to make you think twice. Is the pain really bad enough to get an injection?If it is injected slowly it hurts less. Just less. You can tell a nurse who has had a morphine injection sub-cue themselves. They go slow. They go real slow. Once, I had a nurse jam the needle in and just push the plunger down. I screamed. I wanted to kill that fucking bitch.

Morphine pushed into your I.V., directly into your bloodstream, takes seconds to take effect. One second... nauseating, gagging, waves of black unconsciousness, pain... and the next second...paralysis. Beautiful, numbing, joyful feeling-less-ness. A heavy blanket of warm sand holds your body down and embraces you, taking away the pain and leaving only warmth. You cannot move your arms, you care not to speak. Time stands still and you see the vibrations of time and light move slowly past you like Sunday shoppers.

Unfortunately, it only lasts seconds. The pain remains dull or absent but the paralysis, the sweet numbing nectar disapears almost as quickly as it comes. It leaves me wanting more. I see all too well how this could become a problem. Luckily I am too much of a lightweight. My body cannot handle or process the drug enough for addiction to be a worry. It makes me nauseated, my kidneys can't break it down. I am safe.

2002-09-03T19:53:00.000-07:00

Waiting today. Dr. R__ hasn't called back. I am feeling pretty down. It is hard to wait and not do anything. I feel like I should be either fighting this or living hard and doing everything I possibly can. I am tired though-and I just want to hide and rest. Lie with a baby in my arms.

Wedding Anniversary #5-twins and tumors

2002-08-31T20:00:00.000-07:00

12:10PM
We are driving to Calgary, on the highway just outside of Ponoka. We got out of town relatively quickly. S and the babies are staying with mom. Her sisters, L and B, are coming to help. R and I are going to the Group of Seven exhibit at the Glenbow museum, going for dinner at Murrietta's and staying tonight at the Palliser. Our friends are meeting us at Murrietta's for drinks after dinner. R and I have been talking about where to get pot for nausea if needed later. My stomach hurts a little but not too badly and I am not too tired. I am really looking forward to a fun night and a "trip back in time" to when we were first together (and childless). S gave me an album of hers with pictures of her in it so I wouldn't forget her. I don't have a present for R. I was meaning to look up what a five year gift should be. I feel like I have been a little self absorbed. I thought about upgrading our rings but frankly, anything material seems rather shallow at the moment. The only present I want to give is to be there next anniversary...and on our 30th.

There is a song on the country station. The guy is singing that he wants to live until "he is too old to die young". I don't want to end up this tragic sympathy story. This is going to be a strong and successful fight.

Needle Biopsy

2002-08-30T19:31:00.000-07:00

Friday, August 30, 2002 8PM
We arrived at the hospital at 10:15AM. I was prepped with an I.V of something called Verced, a derrivitive of Vallium. Dr. P__ did two needle biopsies. I stayed in recovery until 3PM. I am down today. Tired of talking about it, tired of not knowing. I wish I knew what I am supposed to fight.
I told R. that I feel like just reaching in and ripping it out of me-that there is this evil, foreign entity in my body. I have been invaded.
Rob has been keeping an eye on my bandages and asking about my status-it feels really good to have him right here with me.
I have reconciled this as the best thing-that, statistically, it was bound to happen to someone in our family and I am glad it was me. I can handle this- and I could not deal with Rob, or the girls, or anyone else being sick.

Love the Verced. I was tired and scared during the drive down but during the biopsy I am calm and euphoric. It is the M__show. All M__, all the time. I have Dr. P__ and the nurses laughing. I put on such a good show. Look how strong she is, they think. I see my character acting in the made for TV movie of my life. A role of lifetime. But already I am tired of it.

Snow in August

2002-08-27T21:51:00.000-07:00

I had been feeling something hard in my stomach for a few months. Don't worry, be patient, your stomach will shrink soon enough, you just had twins. Still somewhere in the dark, I kept wondering. It is just your bowel, you're full of poop my GP said. She scheduled an ultrasound just in case. Probably just a fibroid.

And I wasn't worried. Odd, for me really. I usually worry. I am strong, I thought. What can happen now?

The ultrasound was scheduled a week earlier, but we wanted to go camping. I rescheduled. We took S. and the twins and camped with my aunt and uncle in Kananaskis. We all slept in the trailer. I nursed the twins every three hours and fretted about waking everyone up. In the morning, the world was blanketed with a wet, heavy, coat of snow. The air was crisp and new and the sounds of summer mixed with the music of melting snow. I was tired and grumpy but also proud. Just proud for being there. Look how strong I am, I thought. Look at how beautiful my family is. We are perfect.

CT scan

2002-08-27T19:29:00.000-07:00

7:30 AM-CT Scan, R___ Hospital. Dr. P__.

Ultrasound

2002-08-26T21:13:00.000-07:00

Monday, August 26 2002

C__. Dr. P__. 10:00AM
I don't think I have ever been more afraid...
I went for the ultrasound this morning. I lay on the table thinking about our plans this week. But something was wrong. She went and got the radiologist. Neither looked me in the eye and she kept glancing at him. He asked alot of questions. I knew it was serious.
I have been thinking that maybe my time is up. I have been so amazed lately at my incredible family-at my incredible fortune. Maybe this is it. Certianly it is more than I ever dreamed of having and I do feel like I have dealt with some of the things I was sent here to work out. At first, I was OK with this-accepting my good fortune for such a short time. But now, I am just scared. And sad. I am not ready. I want to see my girls grow into women. I want to be old and happy and crazy with R and drive around in our Westfalia. I am scared.

I am in the ultrasound room. I wait as the tech rubs my lumpy belly with gel. We are talking about the twins. She recognizes me from before, I was here so many times in the last months of pregnancy-twice a month. She asks how the birth was, if things are going ok.. And then she is quiet. I don't notice right away, but she stops initiating converstaion, answers my questions briefly, professionally, revealing nothing.
Revealing everything.
I know there is something wrong. And still, I doubt myself. I am just overracting, being melodramatic.

R often says I am being melodramatic. Sometimes I am. Sometimes the fear and anxiety is more than I can handle and it takes a hold of me. I have been calm lately, though. Calm and at peace. I have a sense of acomplishment that is tangible, solid like a monument of stone. I am nursing healthy twin babies. Identical beautiful four-month-old girls that audibly slurp and gulp as they hungrily drink from my swolen breasts. I am healthy and beautiful and strong and I am nurturing, holding it all together, holding the family together. I am a mother. I am present and I am happy and I am bemused at my good fortune, but grateful.

The Tech finishes and says that she wants the Radiologist to take a look. I lay on the bed and look at the ceiling, feeling the surreality and feeling a dark calm. I know something is wrong.

The Radiologist comes in. His name is Dr. P__. He sits down and silently moves the sonograph wand across my abdomen. He finishes without speaking to the tech. He wipes my belly clean of gel and asks me to get dressed and come to his office.

I am in a dream. I am sleep walking. I do not feel emotion at all. I dress and walk to his office. I do not remember the conversation. I know he tells me that I have large tumors, enlarged lymph nodes that he thinks are lymphoma. He has booked a CT for 7:30am the next morning. Wow, I think. That is special service, I have heard it is hard to get a CT. The CT will confirm what he is already fairly certain of: that I have cancer. He wants to know what kind, and how far it is spread. I shake his hand and say thank you. He looks very sad and serious.

I walk out to the waiting room, where there are young pregnant women and their partners waiting to see their baby for the first time. R is sitting, reading a magazine. He stands up and we walk to the elevator. In the elevator, I tell him that it was not a fibroid but a tumor. He is quiet and I cry.