#28

Life starts to become a little more normal every day.  There’s major itching going on so I know that my incisions are healing.  The stress of not knowing about the results of the pathology is tangible but there isn’t much that I can do about that.  Every few days I call the patient navigator to see if there are any results yet, and each time the answer is, “Not yet.” We’ll just have to wait for the news but it isn’t easy on everyone that’s involved.

Sep 28: Our son and his family are in town for a wedding and Mike and I will be looking after their 2 year old.  I can’t lift him, but we can snuggle.  This is the day we also have our Vegas trip friends and their 3 kids (plus one girlfriend) over for dinner.  I don’t know how I thought I’d be okay to do a dinner for 10, but somehow it works out and I don’t do the dishes!

Sep 29: The band has been booked to play at Lake Ontario Park today.  That’s a one hour gig for the first annual Family Cycle Sunday and we’re going on as the second act starting at 11 a.m.  The plan is to meet at the park around 9 to get set up and organized.  I can’t carry much of anything since it’s just 10 days since surgery.  I have Mike bring along a stool just in case I have to sit down between songs, but I should be okay . . . I hope!  Getting through the songs isn’t as easy as I think it will be.  I don’t have the stamina or strength in my voice yet and I’m glad when it’s done.  That afternoon all I want to do is sit around and doze.  Maybe doing so much so soon wasn’t a good idea but it’s too late to worry about that now.

Sep 30:  The broker of our office has called a special meeting this morning.  Today we find out that Prudential Real Estate has been bought up by Royal LePage in Belleville.  We are no longer in business and we have until 4 p.m. to sign over to the new owner to keep our license active.  There have been a lot of changes in my life this year.  This is just one more challenge.

At the end of the meeting I check my phone and the patient navigator has left me a message.  The results are in!  I can hardly dial the number.  I get her voice mail.  For the next three hours I try to call without reaching her.  Finally, around 4 I get through.  Heart thumping loudly, I ask, “Should I be laughing or crying?” 

#27

Sunday morning finds me more rested than I’ve been since the operation.  Sleeping in our bed, in our house, with my family has made all the difference.  There is still some pain and I can tell that some muscles have been disturbed, but it’s bearable. I don’t bother to fill the prescription for pain pills that I brought home from the hospital.  If I need it, it can be filled later.

*Nothing exciting happens for the morning.  The gas bubbles are still moving around in my bowel, and later in the afternoon I get the urge to go.  I sit and wait patiently for gravity to work because I’m so scared to push my bowel; I’m afraid I’ll pop a staple or a stitch or burst something inside.  Something happens. I hear something hit the water.  When I look down I feel like fainting.  It’s a massive blood clot!  Good grief, is everything alright inside me? Is that from when they cut me?  I don’t tell Mike about what I’ve passed, but I’m a bit worried about it.

Later that day I get the urge again.  This time it’s multiple clots and I’m really scared that something might be wrong, but I’ll wait and see. When the third urge hits me, I actually pass some stool.  It's not like any stool I've seen before but more like little oblong cocoons; but it's not blood! The relief is immediate.  Whew, it took over 4 days, but now my body is working properly.  I keep watch for any more blood, especially any fresh red liquid, but nothing else shows up. Everything is functional and I feel like I’ve won the jackpot. Now if only I can get good news about my pathology; that would be the icing on the cake.  Why does it take so long to get the results?  The next few weeks of waiting is going to drive me crazy.

#26  Sep 21^st Home!

I call Mike and let him know that he can come and get me any time now.  Within a half hour Tina arrives saying “Dad’s waiting in the car downstairs.” and we load up all my belongings.  There’s my computer, movies, my suitcase of clothes and toiletries, my pillow, some gifts: it seems like a lot of things to me.  Because I can walk but I’m not allowed to carry anything heavy, we use the provided wheel chair like a wagon.  Loaded and ready, we head down the hall.  I feel liberated, free from confinement and don’t even say goodbye to many people.  How rude!  I’m just too excited to be heading home. Down the elevator and out the front we go.  Mike is there holding the car door open for me. 

After feeling so strong and successful in hospital, the real world is a bit of a shock to my system.  I take a formidable amount of time to ease myself onto the seat in the Pathfinder and luckily I have my pillow from home. It’s now pressed into service as a cushion for my tummy where the seat belt is sitting. Once we start off, my abdomen feels every last pot hole, pebble and bump on the pavement. Not so self assured now, are you Jude.

Mike is being careful and driving slower than any other vehicle on the road today, but it still hurts me to bounce along, even in this comfortable car. Usually it would take 20 minutes or so to drive home, but this afternoon it seems interminable.  Once at home I set myself up on the sofa, surrounded by pillows and determine that I really won’t do much of anything today. The laundry I brought home with me will wait, and so will the unpacking. 

After a light dinner Mike and Tina are discussing who should be doing up the dishes.  This is too much for me.  I limp my way to the kitchen and propping my elbows up on the edge, proceed to wash up the few items in the sink. Tears start to well up. For some reason every little thing seems to bother me.  I just want to cry, quietly, without a big fuss, just a nice soft teary cry.  It’s probably just hormones or being so tired and sore. Maybe it’s the jangled nerves created by waiting for news about my cancer.  It’s going to be a long two weeks or so until I hear something.

By 9 that night I’m more than ready for bed and try to rest so I can get back to normal.  It’s good to be home.

#25

My hand is feeling really sore from the attempted I.V. flush last night and I ask the day nurse about it.  She says that it should have been removed last night and proceeds to do so.  It’s such a relief to have that taken out of my hand. It’s still really sore and there’s a hard lump formed.

A different doctor is doing rounds this morning and after examining my abdomen he lets me know that all things considered, I might be going home today.  Halleluiah!  That’s the best news I’ve heard in a long time.  Because of this there’s another great piece of news.  I don’t have to get the Heparin injection. Yeah!  Now if only my bowel would do what it should, all the points will be in order.

I head out for another walk through the hall.  When I get back to my room there’s a notice posted on the doorway about a Contact Precaution.  Gowns, gloves and masks are required to enter the room.  Are you kidding me?  It seems that my new roommate is under quarantine because of her diarrhea; so what does that mean for me?  I share a room with this woman and I want to go home today not get quarantined.  I feel like I'm being harsh. It's not her fault but I’m frustrated and a bit angry.  What am I supposed to do?  Where am I supposed to be all morning? The doctor on duty suggests that I spend my time in the sun room at the end of the hall.  He can’t be serious. I even have to leave the ward and go out by the elevators to use a public bathroom.

Cleaning staff have been scrubbing and disinfecting for an hour and the nurse has drawn the privacy curtain between the two beds. Finally I’m allowed to go in to pack up my belongings.  As soon as the doctor signs the paperwork I’ll be allowed to leave . . . and I hope it’s soon.

Right after lunch the nurse tells me that I have been cleared to go home.  She gives me a speech about coming back to emergency if I have any bleeding, nausea, vomiting or several other conditions that I won’t remember as soon as I walk out of here.  It seems that because the doctor could hear gas rumbling around in my bowel during his examination that things were moving well enough for my release.  

When my nurse comes in a few minutes later I ask her the question that’s been eating me up inside.  “Is there any report on my pathology yet?  Do we know if I have to have chemo?”  She’ll check that for me and let me know as soon as she can.  When she returns I don’t see a beaming smile, but she’s not the one who really has to know about this.  “It’s still processing, so no answers yet.  It usually takes 2 to 3 weeks to get any results.”  Waiting is never easy!

#24

My sister comes to see me and brings along some movies I can watch on my computer.   While we’re talking the physiotherapist comes in and advises that I have to do some stairs with her just to show that I am able to move and function at home.  We walk to the stairwell and I hold the railing, brace myself, and go up 5 steps, turn around and come back down.  She seems happy with my mobility and that makes me smile. There it is, more success!

I enjoy having the room to myself and spread the time between watching a few minutes of a movie and walking with ever increasing agility and mobility. With no one in the bed next to me I’m free to open up the privacy curtains and look out over the lake.  It’s such a great view from up here. I can see sail boards, kites, boats and joggers. 

I have a student nurse for the evening and she tries to flush my I.V. site. As soon as she starts the fluid I get an intense pain in my hand.  She decides that it’s blocked, but leaves it in my hand anyway.  Is that a wise decision on her part?  I realize that this is a teaching hospital, but maybe the students should have more supervision.  My hand hurts, a lot, and she left the blocked tubing in my vein.  At this moment I don't have a lot of confidence in her choice.  I'll follow it up with another nurse tomorrow.

  Things get a bit rougher later that night.  I get a new roommate who is suffering with diarrhea and multiple post-op abscesses.  The poor woman has been through a lot of problems lately and calls for the nurse all night long.  No one gets much sleep.

Saturday morning during one of my sojourns I meet a woman who is carefully making her way along the hall.  As we chat, she tells me that she had a resection done on Tuesday afternoon.  That’s the same surgery as mine. I’ve met a kindred spirit, of sorts.  She seems to be having a hard time with her steps so I offer my arm. “Come on girl, we can do this together!”  I feel bad for her in that she seems to be suffering more than I am. At the same time, I feel fantastic knowing that even though my operation was a day later, I’m healing much faster.

#23 Sep 20^th

My roommate is going home today.  Her mom is a nurse and knows what to do for her, so maybe that’s why she’s getting out after only 2 full days.  I’m a little envious of her progress and look at my left hand with disdain.  If she can do it, I should be able to as well.  I need to walk some more.

Since I’m not using the morphine pump my nurse lets me know that I can get unhooked after breakfast and have a shower.  WOW, that sounds fantastic.  She also lets me know that I don’t have to keep recording my fluid output.  That’s another positive sign that I’m getting better.  Success is mine!  The fluid part seems to be working well, but nothing is happening in the bowel department, yet.  The one question I’ve heard from the nurses several times in the last 24 hours is, “Are you passing gas?”  If the answer is yes, it means that my bowel is functional and the surgery was a success.  I haven’t yet, but I can feel gas moving around in there.  Is that good?  I hope so.

True to her word, my nurse removes the morphine pump from my hand, but leaves the I.V. needle in place, just in case. I’m disappointed with that but at least I don’t have to take that pole with me everywhere I go. Freedom!

 I enjoy having the shower water run over my sore, tired body. I wash my hair even though I’m not supposed to reach my arms up over my head.  I ask you, how can a head get scrubbed if you don’t put your arms up over your head? I was careful not to stretch anything too much, and nothing hurt more than normal after my shower, so no harm done.

All clean and feeling much better, I dress in my pj pants and t-shirt that I wore into the hospital two days ago. I almost prance down the hallway in my new look, but by the time I get back to my room the waistband of the pants has irritated my stitches far more that I’d like to admit.  I phone home and ask Tina to find my new night gown and some pants with a looser waist so Mike can bring them to me when he comes to visit this afternoon.

#22 Sep 19^th p.m.

After my walk, I set up my laptop on the table.  I feel almost normal checking e-mails and scouring through Face Book.  Flexing my abdominal muscles and my left wrist seem to be the only things that hurt me, so sitting at the computer is good and enjoying a leg massage while surfing is even better.

Later in the day the directions have come down to the nurses that the massage unit is to be removed, and it is.  By this time I’ve decided that I don’t need to take any more morphine hits and my nurse says they can give me Tylenol instead. Getting up and bending aren’t so easy for me but other things are moving along nicely, and they’re surprised at how well I’m walking. 

My sister comes to visit.  I can’t laugh yet, it hurts too much, but she brings me a really funny get well card. There’s a picture of a leopard with a caption that reads, ‘Will it help if I lick your face?’  I’ll get her back for that.  She also brings a cute night gown. It flows from the shoulders, so shouldn’t touch any sore spots or be too restricting.  I can wear it once I get rid of this wiring in my hand.

Other company arrives too.  It’s really nice to have visitors.  It helps to pass the time chatting with them.  When they leave I go for another walk.  With each hallway circuit I’m feeling stronger, travelling faster and walking more naturally, I.V. pole and all.  

Dinner arrives and I’m served real food.  There’s a piece of white fish, boiled rice, and what looks like mashed up carrots. I take my time and gingerly nibble at the food, not wanting to put my stomach through too much too soon. The tray includes some hot water and a generic tea bag.  That tea bag reminds me of something I packed so I go to my suitcase and find the little plastic bag that contains several sealed pouches of peppermint tea.  It’s a flavour that I prefer and it seems to help with digestion after a meal.  Although I was hungry, I stop after eating less than half of the food.  I’m full already!  That’s crazy. Maybe I can lose more weight.  There could be a good side to this too.

Mike and our daughter, Tina, come to visit.  Having company is such a great diversion. Since I can’t wear my new night gown yet I send it home with them when they leave.  I don’t like having too many personal things here to look after.  I already have a phone, computer, clothes and my own pillow.  That's right; I insisted that my pillow came with me and it does make a difference to my comfort and my sense of control over my environment.

Tonight I can actually roll onto my side with hospital pillows surrounding me at my back, under my tummy and between my knees.  I’m much more comfortable this way and sleep comes easier too.

#21 Sep 19^th Noon

Now that I don’t have a catheter I get to heave myself out of bed to go to the bathroom all by myself.  What a great way to make sure I don’t stay in bed and that I get a bit of exercise too. To this end I learn how to unhook and remove the special leg massage units. The nurse tells me that I have to measure my fluid output for a while and provides me with a white plastic measuring bowl with a wide sombrero-like brim.  This sits under the toilet seat and catches everything so I can record it.  There is a whiteboard on the wall at the foot of my bed.  Here the staff displays the date, the nurse’s first name and any special instructions.  This is where I am to write down how much I produce and at what time I collect it. It feels odd to have to do this, but, as with so many other things happening now, it is needed.

My roommate is a young woman that has recently had an ileostomy done.  That is where her bowel is connected to a bag that hangs on the outside of her body.  Suffering from Crohn's disease, she has had several operations to remove different parts of her colon, advancing upward each time. After talking to her about her experiences from the tender age of 12, I should feel incredibly lucky.  What do I have to complain about? Just cancer.

Today the doctor that did her operation stops at my bed on his way out.  He informs me that he’ll be checking on me since my doctor is at a conference in Ottawa for a few days. He points to the massage pants. “Get rid of those!  They tie you to the bed too much.  You don’t need them now.”  He’s right, of course, but he could have been nicer about it.  I feel like I’m going to burst into tears but I don’t let it show, I just smile at him. ‘Come on, Jude!  He didn’t mean to pick on you.  Snap out of it.’  I seem to be so emotional now.

I hit the morphine pump, take the massage pants off and sit my bed upright. Sliding off the edge, I grab hold of the I.V. pole, and brace myself to go for a walk.  Before I leave the room I slip a second gown over my shoulders, like a cape, to cover my bottom.  I can put on some under wear, but the back of me still wants to be covered.

#20 Sep 19 a.m.

The catheter tube is running down into a plastic box that sits inside a big plastic bag attached to the side of bed.  The liquid within looks to be rather dark; not dangerously dark, but not normal. I wonder if it’s something I should be concerned about. My abdomen is more distended than last night.  Maybe it’s just gravity working against sliced, sore muscles. There’s no way that I can try to hold it in so I throw my self-consciousness out the window and let it all hang out.  It feels like something is going to fall out while I’m standing there, so I cradle my bulging gut with my right hand. One nurse gets the I.V. bag, another gets the unfortunate task of hoisting the bag of urine, one of them takes my arm and we start to walk.

This is not easy.  Every step is awkward and unsteady, but I make it out the door and face the challenge of getting down the hall.  The plastic catheter tube is making its presence known and I try not to disturb it with my movements.  Things actually get a bit easier with each step.  After about 15 paces my nurse advises that it’s enough for a first walk and we turn around and I limp my way back to bed. I’m exhausted, but I made it.  I resolve to tackle one challenge at a time.  Getting into bed is much easier this time so I must be getting stronger.  I feel better knowing that. 

When lunch time comes I’m granted some clear chicken broth with orange Jello for dessert.  It’s not real food, but that tiny container of orange jelly is the best-tasting thing I’ve had since Monday - actually it’s the only thing I’ve had since Monday. I’m looking forward to something a little more substantial for dinner; actual solid food maybe.

When lunch is done and cleared away my nurse comes in to remove the catheter. Curtains are pulled around the edge of my bed to offer some privacy from the passersby in the hallway. It’s a bit embarrassing for me to have this person I don’t know working down there.  She is very matter-of-fact, though, and talks gently about what she’s doing while she uses a plastic syringe to remove water through a valve located on the side of the rubber tubing.  This will deflate the balloon inside my bladder that is holding things up.  The catheter escapes without me feeling anything. When she’s done and gone I realize that things could have been even more unsettling if it had been someone I knew or might see again.  Not a nice thing to go through, but necessary.  Now I can put on some pants.

#19 Sep 19th

Surgery is never wonderful, but I have to admit that I’m not feeling as tough as I thought I would.  Don’t get me wrong here, my body hurts, I can’t sit up by myself, I need help to do almost anything, but the pain is bearable.  There’s a morphine pump attached to my I.V. but I haven’t hit it- yet.  I’m holding that in reserve for when they get me up, because I’ve been warned that it’ll be this morning. 

There is no breakfast, no morning coffee, but I really don’t feel hungry at all, just thirsty.  When the nurses change shifts at 7 a.m. I get bold and ask if I can have some water.  “Yes, I’ll get some.”  That ice cold water tastes like a gift but when it hits bottom it reminds me that I haven’t had any solid food since Monday night’s dinner and it’s now Thursday.  A word of advice here, don’t drink a lot of ice cold water on an empty stomach.  It hurts!

When my nurse comes by to check my stats again I ask, “Why am I in a semi-private room and will I be moved into a ward?”  She assures me that there are no wards for women on this floor and I won’t be moved. That’s good!  By mid-morning I’ve dozed a few times but remain in my bed with those air pillow pants massaging my legs.  I decide to take inventory.

 

My swollen midsection is covered in purple and blue blotches.  Every incision has a bruise either right at the site or surrounding it and at the bottom left there’s a huge deep dark bruise that is very sensitive to the touch.  It must be at least 4 inches across and so dark it looks like a Hollywood makeup mess.  Before I get through touching all the sore places on my belly, two ladies come in to get me out of bed.  Massage pant legs are removed and the head of my bed is raised until I’m almost sitting upright. Trying to get into position on the side of the bed is nasty.  Pain shoots through me when I try to use muscles that have just been cut, so I decide now is a good time for a shot of that morphine.  The nurse agrees and hands me the button to push.  In what seems no time at all the hurting has decreased and I lift myself off the bed and stand on my own two feet.  

#18 That Night

I find it odd that the nurses are required to go around and wake you up in the middle of the night to check your stats.  This happens twice for me, and twice for my roommate.  I suppose it’s better than you suffering but there really isn’t “a whole lot of sleepin’ goin’ on!” 

My bed is close to the door and there’s a young woman in the bed near the window.  Every time someone comes in or leaves, everyone wakes up.  They must have made a mistake putting me in a semi-private room when my coverage is ward.   I hope they don’t realize their error for awhile.  I’m not ready to pay $215 a day for a semi-private room. I can’t imagine what it would be for a private room in here.

As I try to adjust my position I’m painfully reminded that I have stitches in my abdomen.  ‘Ouch, maybe that isn’t a move that I should try just yet. Lie still now and try to sleep.’

Sleep does come in short bursts but a hospital is neither a quiet nor a restful place.  I’m glad that I remembered to pack a pair of ear plugs in my bag.  They work rather well for me and when people come around to wake me up to check on things, I actually have to take them out to hear what they’re asking me.  Morning finds me awake but not very rested.

Everything that happened for the balance of the day after my surgery is a bit of a blur so Mike has since filled me in on the details. He went to visit his mom upstairs when we parted company at the O.R. door and later came back to the second floor to wait for my surgery to finish up.  The surgeon came out about 4:45 to say everything went well and I’d be going into Recovery shortly. Mike came to see me there around 5, but I was still asleep and the nurse told him to give me a couple of hours.  When he came back to Recovery at 7 they told him that I was already upstairs in my room.

 *   #17 My Room

The air pillow pant legs are to help move the blood along my veins and to prevent blood clots from forming.  I’d really like a pair for at home but I don’t think they’ll go for it; too bad! 

One of the nurses tells me that she’s going to get me cleaned up.   She adjusts the sheet, lifts the gown and with a small wet towel in her hand tries to wipe away some of the mess created by surgery and iodine.  I venture a look at my belly and what I see isn’t as horrific as I thought it would be, but it’s not pretty.  

There are 5 bandages visible. My tummy looks like someone has used it for stabbing practice with bandaged “X” s all over the place and bright pink, almost red, colour smeared everywhere.  There are huge dark bruises and down the middle near the bottom is a bright reddish bruise. It’s odd looking and almost speckled. 

This was taken after I got home so it's not as colourful or as bloated as it was the day after surgery and some of the bandages have already come off.

The 3 smaller incisions, each about an inch or so, have crosses of steri-strips that are caked with blood, some dry and some still oozing.  My gown shows the evidence of that in a couple of places.  My belly button has a double layer of strips that almost seem to be holding it together.  The whole abdomen is so distended that I look like I’m 8 months pregnant – while lying down!  Just barely visible beyond the hump is a large bandage covering the longest cut on the bottom left. It looks to be about 4 or 5 inches across, but with tape and gauze covering it, I’m really not sure.  One thing’s certain: I’m very tender so every wipe of the towel is a bit painful. 

The nurses are about to change shifts so they do temperature, pulse and blood pressure readings one more time.  I mention how thirsty I am and some ice chips help, but I’m only allowed a few at a time. The nurse shows me how to work the morphine pump that’s attached to the I.V. in the back of my hand.  When Mike arrives we visit for a short while and when he leaves I settle in to try and get some sleep.

#16 Post Op

“Judith, it’s time to wake up.”  Someone is talking to me, but I don’t know that voice.  Groggy-headed and seriously disoriented I try to clear my thoughts, but it isn’t easy.  Then it hits me: I’ve had the surgery, I’m alive and everything hurts.  My left hand is hooked up to something so I gingerly move my right hand over my tummy.  Yup, there are some bandages; no, a lot of bandages and everything feels bloated, tender. There are too many lights and a lot of noise. I’m in Recovery. So how long have I been out?  My mouth is so dry it feels like sawdust. 

“Your room will be ready soon.”  Blood pressure is taken, temperature and pulse, all the normal stats.  I think I just wet myself, but I don’t feel wet. I can feel a plastic tube touching my inner thigh. I have a catheter?  I’ve never had one of those before.  It’s good that I don’t actually feel it in there. I must be going in and out of wakefulness because there are gaps in what’s happening in the recovery room.  My head is still groggy and although I’ve been out for what must be hours, I feel really tired.

Someone has determined that I’m ready to move. My stretcher wheels are unlocked, someone pushes along my I.V. and we bump our way through the door, jiggle down the hall and thump into the elevator.  It feels like an earthquake every time the edge of my bed hits something.  My stars, can’t they tell how much my body hurts with each and every bang?  We get to the sixth floor and they wheel me into the room.  Now they ask me to lift myself up on my arms and shift onto the bed.  Oh (@#*+), that’s painful.  I think I need to rest now, but they don’t agree. 

Someone is fitting something on my legs. I still have the pressure stockings, but this is different.  Velcro fasteners secure weird looking pant legs with tubes attached.  When they turn on the pump I get the most relaxing leg massage I’ve ever had.  I can feel the air pressure moving up and down each leg, like a talented masseuse.  Nice!  I sleep.

# 15 The Operation

Over the course of the next hour there are several visitors to my bedside.  A resident student doctor, he’ll be in the OR observing. A young woman in scrubs who is also in training. The anesthesiologist; his job is to keep me alive but asleep for the others. We talk about my prior blood clots post op and he says that they will be putting in some Heparin to thin my blood, right after surgery and I’ll be having those shots while I’m in hospital anyway.  I ask, “Are you good at your job?” and he replies, “I am adequate.”  We both have a little forced laugh. 

I look at the clock.  It’s after 1 and now we’re running more than an hour late. The doctor can take as long as he needs to with that other patient so long as he takes his time with me.  We wait.

The last person to visit me is my surgeon.  He’s sorry for the delay but we’ll get started soon.  At 1:30 I get off the bed, trying to cover my behind, then Mike and I hold hands and walk out of the preparation area to head down the hall.  We pause outside the OR door, lean in for a brief kiss, and then turn in opposite directions.  “I’ll see you later,“ and he’s gone.

This is the weirdest feeling . . .to walk into the operating room and boost yourself up onto the table.  Huge lights, ten or twelve figures in scrubs; so many people involved, this is surreal.  I lay down on the cold surface and someone covers me with a warm flannel sheet.  "Oh wow, that heat feels great, thank you!"  Everyone has their job to do; all seem busy.

There’s someone moving the gown down from my shoulder and slapping sensors all over my chest.  “Sorry I am exposing you,” they say, as I grab at the cloth and try to cover my naked breast.  I know I’ll be as naked as the day I was born in front of all these eyes, but I don’t want it to happen while I’m still awake and aware.  I see a mask coming toward my face, “It’s just oxygen, breathe deeply. You should feel the medicine I’m putting in your arm.”  Yes, I . feel . . it. . .  

#14 Pre Op

After a few minutes another nurse comes in and hands me a pair of pressure stockings.  With my history of blood clots the hope is that these stocking will prevent blood from pooling in my legs and feet. They’re pearly white, and so tight that I struggle to pull them up.  Finally, mission accomplished.  

Yet another nurse comes in and inserts an I.V. tube into the back of my left hand.  Crap that hurts!  Every time I move my wrist the bloody needle pokes me somewhere inside.  I cradle my injured hand and wait.  Where is Mike?  I really can’t imagine going through this alone.  I need his strength and support.  My mind is racing, my heart is pounding.  I'm scared!

When my nurse comes back to check on me I ask if there is any way I can have a little something medicinal to take the edge off.  While I waited for the last major surgery, so many years ago, I shook so hard that I thought I was going to break the bed.  She’ll ask the doctor and see what she can do for me.  I wait.  A few minutes later she comes back with a little plastic medicine cup that contains some pills.  “The 3 large ones are Tylenol and that little white one will help you relax.”  I can’t recall what name she gives it, but as long as it helps, I really don’t care.  I get to choke them all back with the thimble-full of water.  That’s all I’m allowed to have in my stomach before my operation.

As I peek through the edge of the curtain to my left I can see into the front waiting room.  There he is; Mike is back.  A sigh of relief escapes my lips.  He’s ushered in by one of the nurses.  “I had trouble finding parking,” was all he said.

I need some reassurance right now so Mike sits at the end of my stretcher and I literally lean on his back.  This gets some questioning looks from others, but I don’t care.  I’m going to lean on him and just breathe so I can try to slow my pounding heartbeat.

#13  Prep Day

While we’re cleaning the house, I have to excuse myself several times to empty my bowel.  This isn’t very pleasant, but I’ve been here, done that, for the colonoscopy and the second sigmoidoscopy.  I’m on pins and needles waiting for the hospital to call and give me the time.  Finally, the voice on the other end of the phone says, “Your surgery is scheduled for noon and you have to be at the same day admittance office by 10 a.m.  Nothing by mouth after midnight tonight.”  Noon?  Well, at least I can sleep in until about 9, that is if I even get to sleep.

Sep 18^th is the day.  I get up around 7:30 as there’s just no sleeping with my mind obsessing over today’s operation.  I take a nice hot shower and let the water run over me for what Mike calls “forever” but it doesn’t seem long enough.  I decide to wear my plaid pajama pants and navy blue t-shirt to go to the hospital.  That way I’ll have something super comfortable for today and for the trip home in 4 or 5 days time.

We drive down to KGH and he lets me off at the door while he goes to find parking.  It’s nearly 10 and I walk at a very quick pace.  Oh shoot (substitute another word in here), I can’t be late.  I’m not late, but just in time to hand in my OHIP card and “please have a seat.”  So I wait.  There are so many people here already.  Some in those sexy gowns, some in street clothes, and others in their own pj’s, like me.  Are they as scared as I am?  Do they have cancer?  Are they being opened up today too?   Where’s Mike? 

 

They call my name.  It’s my turn.  A smiling nurse leads me to a small curtained cubicle where I strip naked and put on one hot, revealing open-backed gown.  Now at my age a woman sometimes has a problem when she sneezes or coughs.   We leak.  There, I admit it: I leak a bit of pee if a sneeze catches me off guard.  The smiling nurse finds me a pair of disposable elastic underpants and a huge maternity sanitary pad.  When things are all tucked in she leads me to another room where . . .  I wait.  

#12

Sep 10^th at 1:30 I have an appointment at our family doctor’s office.  I meet with a fellow I’ve never seen before and he goes over some info, and then performs a routine examination for the pre-op: forms are filled out, blood pressure, heart rate, that sort of thing. 

The next morning I go back to the hospital at 10:30 for more pre-op screening.  This includes an electrocardiogram, blood samples, blood pressure readings, and a few other things that aren’t really invasive. There is a discussion about my pulmonary embolism that happened after abdominal surgery many years ago (blood clots in my lungs!)  Yes, I’m scared of that happening again, so please take care of me.  We talk about the Heparin (blood thinner) needles I had to stick into by abdomen after a uterine ablation about 8 years ago.  I’ll probably have to do something similar this time too.  Why is my heart pounding so loudly? I need to hear what she's telling me. It could be important!

This afternoon is the meeting of our ladies group at our church.  I let them know about my upcoming surgery.  Most of them have been touched by cancer and they understand all too well what I’m going through.  It helps to know you’re not alone.

Sep 17^th is the day to prepare my body for the surgery.  For breakfast I have to drink a glass of PurgoDan which tastes like lemony salt.  Not nice at all but necessary.  No solids are allowed today, just clear fluids.  I can have chicken broth for lunch and PowerAde for snack.  Gross!  Beef bullion for dinner.  Yuck!  I get another glass of PergoDan with a Dulcolax tablet for dessert.  I’ve asked our occasional cleaning lady to come in today to help me go through the place: vacuum, wash floors, clean bathrooms and dust.  I won’t be cleaning anything when I get home from the hospital, will I?

#11 Viva Las Vegas!

Our flight is uneventful, although quite turbulent in places.  We donate a bit of cash to the slot machines, have some lovely dinners, see great shows and enjoy our time away with friends.  It’s not that easy to forget about the upcoming drama of cancer surgery.   There’s always that little voice at the back of my head reminding me of that.  There are some things that I have to continue even on vacation.  My diet has been adjusted lately to include more of what will keep things moving. Oatmeal for breakfast every morning elicits some odd looks from our friends, but they say nothing.  Loads of vegetables, fish two or three times, and not too much red meat seem to go pretty much unnoticed.  While we’re at lunch on the last day of our trip I drop the bomb.  “I’m going in for surgery, they found cancer.” 

You just never know how someone is going to react so I am thankful that although they’re obviously surprised, they’re not over the top with emotions.  It’s a good thing that we’re sitting at the booth in the hotel restaurant.  Mike and I are sitting on one side; the two of them are facing us.  No hugging, no clinging.  That’ll just bring out the tears, so keep it light, Jude. We’re past the hard part.  Can someone be funny please?

Of course they have questions; of course we have to talk about it a bit.  I think they understand why I’ve kept it from them for so long. Maybe. Our flight home is the “red eye”.  Mike and I are seated back near the tail section in row 27 and our friends are in row 16 so we don’t chat, we just try to get some sleep. Not happening.  Coffee at 4 a.m. on a jet is a new experience and it offers me the opportunity to see some pretty amazing nightscapes across the land.  Around 6:30 in the morning we get a unique view of Toronto as the city starts to wake up and our wheels touch down.  I ease back into reality; our vacation is over.

#10  Aug 30

For some reason I just can’t bring myself to talk about this to a lot of people.  Our three kids know and a couple of close friends.  My sisters get the news and then I tell some ladies at work so they can help look after my clients while I’m otherwise occupied.  I have to let my clients know why I’ll be out of commission for a few days as well.  Otherwise, I'll keep it to myself.

Maybe I’m afraid that talking about it makes it more real.  If I don’t tell people, it can’t be real, right?  Mostly I don’t want anyone to treat me any differently.  That would really suck.  I can’t do the: “Poor thing, oh I’m so sorry.”  Don’t pat me on the back and give hugs that you don’t usually give.  I don’t want sympathy.  I just want to be normal and live my life.  Now if only this cancer will let me.  

I can’t tell the couple that’s going to Vegas with us.  How can I spoil our vacation with that news?  We’ve been friends for over 20 years.  I’ll tell them later and maybe they’ll understand why I held it back.  I hope so!  Oh, and by the way, they are the parents of those twin girls that graduated this spring.  

Life goes on and we prepare for our trip: sort, do laundry, pack, change your mind, re-pack.  How many outfits? How many days? Is there a dress code?  Do I take 3 swim suits? Buy some U.S. cash.  We paid for the trip long ago with American Express Gold so we have travel insurance, I think.  If I get hurt in Las Vegas I’ll have to call American Express and find out if the promised coverage is still in effect even though I’ve had this diagnosis after  we booked and paid for the trip. How does that work?

Aug 30^th we pick up our friends, drive to Toronto and check into our hotel.  We can leave our car in their underground parking garage for the week if we stay there the night before our flight.  They provide breakfast and shuttle us to the airport in the morning and pick us up when we get back next week.  It’s a win – win situation.  

#9 Aug

Stress can be a very powerful thing.  My back muscles are so tight that it hurts terribly to bend over, or to straighten up, or to move.  I make an appointment and visit our chiropractor for some electrical massage, re-alignment and heat therapy.  It helps a bit, and I go back a couple of days later for another treatment.  It feels like my body has turned against me.  For some reason diarrhea has become part of my routine a couple of times a week.  There is no blood visible in the stool, no real pain other than cramps, so I let it go and try not to think about it.  Come on Jude, focus!

*On Aug 22^nd Mike and I meet with my surgeon at 8:30.  My patient navigator is there and it’s nice to actually put a face to the voice I’ve spoken with several times now. The specialist is pretty matter-of-fact and shows me a full-colour picture of what will happen when I have surgery.  He’ll make a series of small incisions on my abdomen.  Two above the waist line on either side, one right in my belly button, another smallish one at the bottom right and then the largest cut will be on the bottom left so they can extract that part of the bowel that they’re cutting out.  “We’ll be doing some work through your bottom too, but you’ll be asleep so . . . !“  He talks about instruments, lights, air pumped into my abdomen so they can see what they're doing.  This can’t be real!  Sliced and diced!  I feel slightly nauseous, lick my lips and try to pay attention. Tears are starting to well up.  No!  Don’t break down, stay cool.  I force a grin.

My patient navigator pipes in that I’m scheduled to have the operation on Sep 18^th.  That’s a Wednesday.  I tell them that we are NOT cancelling our trip to Las Vegas at the end of August.  It’s been paid for since March and we’re going with our friends, and we need the break, don’t we?  They agree, “Take your vacation and enjoy yourselves.  See you in September.”

#8 Jul - Aug

At this point I need to remind myself that I still have a job to do, there are family functions, birthdays, picnics, Mike’s mom is in hospital; I have to keep busy with meals, laundry, housework, life goes on.

Mike and I are also in a band.  Yup, we play out at a local bar once in a while and even have something booked in August at a campground. Fun!  We practice once a week with the other 3 members.  It’s so much fun and gives my brain a break from thinking about cancer. I play keyboard and guitar and provide vocals and harmonies.

In July I’ve gone through two real estate offers and their inspections, multiple appointments, house hunting tours, business meetings, a new listing with photo shoot, a gig at the club, our drummer’s retirement party and Mike’s second cousin’s wedding. That’s life, it’s busy, move on!

Aug 1^st I have a telephone consultation with my patient navigator, Patty.  We discuss what has happened so far and what the plans are for the immediate future.  I’m going to meet with my surgeon and find out when I get sliced and diced.  Just how much of this can my brain absorb and what can I do about it anyway?  It feels like a bad dream.

The campground gig is interesting.  We get hit with a torrential downpour about half way through our first set.  We actually have to stop playing for 25 minutes for fear of getting electrocuted by our equipment but I still love playing old rock and roll.  It makes me happy.

Aug 4^th to 9^th we have our three little granddaughters visiting us. Liv is 8, Em just 5 and “Doodles” will be 3 this month.  Love them to bits, and they’re a whole bunch of busy fun: splash pad picnic, rope swing in the tree in our back yard, running under the sprinkler is cool! It’s almost a relief to have someone else to think about and worry about for a while.

#7 Jul 31^st

Now that I’m not in so much discomfort I watch the tube twist and turn through the passageway that is my gut.  After several minutes of searching the little star shaped scar from the smaller polyp is found, and then finally, the point to be tattooed.  That’s right.  I am about to receive my first body art but before that can happen a couple of assistants are called in to help hold ends of tubes and loose bits of hose.  Maybe I should charge admission to the spectacle of my inner workings being marked. 

I watch the probe come up to the scar, the doctor asks for the needle, someone hits a switch somewhere, and pop, I have a blister of black ink on my inner colon.  A little moving around and there’s another one and after a few missed shots, the third is installed.  I am officially inked, not that anyone other than the surgeon and pathologist will ever see it. 

With this task complete the doctor moves to the computer on the desk at the end of the room and taps in details of her work.  Her comrades finish up with my bottom and put things away. Then a surprising comment, “The results are in from your CT scan this morning.  Let’s have a look.”

‘Please be good news, please be good news’; I mentally chant the mantra with passion.  ‘Oh my God this is nerve wracking.  Please be good news!’

I hold my breath, waiting for the hammer to fall - but it doesn’t.  They found no visible tumors in my scan, but my uterus has fibroids that should be addressed at my next visit to our family physician.  Big sigh of relief right here.  No visible tumors! It’s the best news I’ve had yet.

I get dressed and drive home with a little smile on my face.  I have ink!

#6 Jul 31^st

I have another 9 a.m. appointment at the hospital.  This time it’s for my CT scan.  I’ve wondered about them, taken Mike’s dad to a few with his stomach cancer, but haven’t had one myself yet.  I check in at the desk, have a seat and wait, wait some more, then I’m led into another waiting area just outside the behemoth’s door.  Someone installs an I.V. and gives the speech “You may feel as if you wet yourself, but you won’t.  It’s normal.”  Are these butterflies in my tummy just nerves?  It may be the fact that I’m having the other sigmoidoscopy this afternoon and my gut is feeling pretty empty.  The door opens and I’m ushered in. 

Lying on the table I wonder if I’ll feel anything when the scanner peeks into my inner workings.  I sense the liquid dye going through the veins in my groin and yes it feels like I’m wetting my pants; that’s such a weird sensation.  Arms over my head, take a deep breath, and again, and one more time and it’s all over in less than 3 minutes.  I drive home.

At 1:30 I’m back at the hospital for my next procedure.  This should be easy.  I’ve had it done before.  Into the sexy gown again but this time there is no I.V. and no sedation but there is a lady doctor navigating.  We begin.  I feel a little discomfort, a bit of air is pumped in, I feel a lot of discomfort.  Where’s that sedation when you need it?  Twisting and turning the tube doesn’t seem to help get it around the first bend.  Ouch!  The doctor seems frustrated with this lack of progress.   I feel the appliance being removed as she asks for a thinner tube.

I’m relieved when the juvenile sized tubing passes through smoothly and without incident. Now she has to locate the scar from the removal of the mutant polyp.  The search begins just past the first corner.

#5 Jul

Two weeks have passed, and no dreaded phone call is received so things are looking pretty good.  I tell the kids that it looks like this was a false alarm and their mom is good to go. 

The next week I’m at home preparing dinner and the phone rings.  “Private Caller” is such an annoyance, but I answer it anyway.  It’s the doctor from my colonoscopy.  He has just gone on holiday but doesn’t want me to have to wait for weeks to get this information.  I think, “Great timing.  He’s telling me I’m all clear.  Nice”  NOT!

They found cancer in the mutant polyp. CANCER!  That word kept screaming at me over the phone.  I get a little dizzy, but keep my cool. There was a 3 millimeter break between the cancerous cells and the point where the polyp stem was severed, but there was a blood vessel a bit closer and they don’t know for sure if they got it all.

The rest of the conversation is a blur.  I try to write notes about this secretary and that patient navigator and the surgeon; SURGEON? 

Someone would call me to set up a CT scan to look for tumors and . . . I don’t remember much about the balance of that phone call.  One thing that sticks in my mind is that I need to have another sigmoidoscopy to mark the location where they found the cancer. “Thank you for calling.”

As the phone touches the cradle I have a major meltdown.  Crying, sobbing, cursing and screaming out loud; it doesn’t change anything, it just vents off some anger and fear.  “It’s a mistake, that’s someone else’s polyp.”

When I calm down I go to the computer.  I spend most of the next few weeks online looking at images and reading reports, and blogs, and medical journals; doing anything I can to find out what I’m up against.

#4 Jun 25^th  part 2

Because I’ve had a sedative the hospital requires that someone pick me up from the floor after the procedure.  Mike has been to visit his mom at the other hospital, and now he’s downstairs in the car, waiting for a parking spot so he can come to the 4^th floor to collect me.  It actually takes quite a bit of convincing, but I’m finally allowed to walk myself to the elevator so I can go out to meet my hubby.  I know - Liability!

That evening we go to celebrate the grade 8 graduation of twin daughters of our long time friends.  I put on a pretty good face. I keep my fears and concerns in check.  No way do I want to spoil their day, nor am I ready to share my medical details, at least not yet.

Jun 26^th

I’m a real estate sales representative and as such I have to maintain my license with regular classes and upgrades.  Today is the day for a 4 hour session at the local ice rink meeting room.  It’s time to sit and listen to someone tell us all about their field of expertise, or something vaguely similar.  Enough said. This afternoon, however, is being spent with a retired couple who plan to move here from Toronto so they can be closer to their children and grandchildren.  This is much more fun than sitting in class.  We tour around town and view several prospective homes.  We talk wants and needs for their new place, budget, location; all the things that make a difference to them.  Oh, by the way, these are the grandparents of the grad twins.  Small world!

I am waiting to hear something about the pathology report on the items removed during the colonoscopy.  The doctor suggests if I don’t hear anything in a couple of weeks it means they found nothing notable.  

#3 Jun 25^th

9 a.m. and my tummy feels so empty, and I’m really quite nervous about this.   Mike is supportive, but he doesn’t know what he can do for me, if anything.  I get dressed in the sexy open back gown and lay down on the appointed stretcher.  The staff here are kind-spoken, which helps a lot, and I receive an I.V. for the promised sedative.  Tick, tick, tick, it seems like a lot of waiting, but finally it’s my turn.  They wheel me into the procedure room, and there’s that overhead monitor again!

An I.V. is started, the tube is inserted and this time navigated by yet another tech.  A nice, pristine white colon is on screen.  Good job Judith!  Inch by inch they proceed and then they inject some air.  Ooops, I felt that.  In goes more sedative; aahh, that’s better.  Take a picture here, stop and examine something else there - this is a breeze!  I feel no pressure with the drugs in my veins, so I say, “Have at it, no issues with me!  I’m feeling fine.”

We go past the mutant polyp then up across the top of the intestine and down the other side.  Nothing much to see, just lots of folds and wrinkles.  Now the fun begins.  They backtrack to the site of interest and take more pictures.  Then this little metal loop comes out of the end of the rubber tube and lassoes that wiggling, jiggling mass.  Next thing I know the errant polyp is being removed from my body and imprisoned in a little labelled jar.  We go on to the next one.  It’s a bit smaller and not at all colourful, but they snare it as well and into the jar it goes.  This continues a couple of times more on small white bumps of interest.  Did I mention how thankful I am that the colon has no pain receptors?  The metal loop actually uses electricity to burn off the tissue and cauterize the wound.  Now that is really kind of neat!  A few minutes later I get dressed. Done!