Bone First Please

I’ve started to lie and that is something I never do. But I’m coming clean so that I won’t have to lie again.

Even though I know when I get my results, I tell my family that I am not sure when I will get them. But I have come clean and told them that I will not tell anyone when I get the results because I feel too much pressure.

Imagine having everyone in your family’s hopes resting on your shoulders. They are all so hopeful and anxious that the test results be okay that I feel more anxious about hearing the results. It is like I am not only waiting for the axe to fall on me, but to fall on my family too. And with the nature of Stage 4 Inflammatory Breast Cancer, the axe will fall at some point.

The other morning Jacquie was driving me to the hospital and she kept asking me ‘So, what do you have today? Is it blood work and x-rays?’ I answer yes twice and then she asks me again. “For fuck sake Jacquie, you know fucking well I am getting the results, why are you asking me. I didn’t want to say because now I feel more pressure that you are going to be sitting for an hour worrying and now I have your fucking pressure too. Christ.” I am crying and Jacquie starts crying. I feel better that I have passed on some of my angst to her.

The tears have given me some relief. Notice how I deflect my pain.

I am such a beast I have just been yelling at an angel. And in angel fashion, Jacquie apologizes to me.

My appointment is for 9 a.m. and I get brought in to the room. I change and put on a gown and then have to leave the room walking down the hallway with a bare back and my tail hanging down because I was placed in the wrong room. No big deal.

If you can believe it, I am feeling much more relaxed than I was the last time I came. Back then I almost had a panic attack.

In the new room I sit with my eyes closed thinking that if I keep them closed when the doctor talks to me I won’t have to see the axe swing down. It is sheer torture having to see all this come at you. Some of you might remember my post ‘Some Fantasies Are Better Left As Fantasies’ http://circlingmyhead.blogspot.com/2008/02/not-many-people-know-this-about-me-but.html where I talk about not having to see what is coming at me.

I often wonder how others cope with impending doom. What are other strategies people use while waiting for test results that may change their and their family’s lives again? Over the last few years I have learned to live a lot in the now, but when the now is the waiting room and the possible axe it is a difficult now to live in. It is hard to be present when the present situation is extremely stressful.

In the end, sitting in the waiting room waiting to be called and then being brought to the examining room waiting to be examined I continue my self-talk. ‘Fear is the mind killer. The results will be what they are. I am doing the best I can. Please God help me.’

I tell myself that it will be okay. The bottom line is that I know I want it to be okay, but I know that it just might not be okay. I know that the possibility that it is not going to be okay and that the disease may not be responding to Femara any longer is real. I know that the cancer will spread even if I am tough and brave and believe. I know that the cancer will find its way around the treatment I am on and will bring me closer to my death; and I wonder if this is the time that will happen.

I have had to deal with the knowledge that since the word cancer came out of my doctor’s mouth that nothing will ever be okay again. Since that word ‘cancer’ and in the hours and days and months since; I knew it would never be clearly okay again.

I tell the nurse I want the results from my blood tests and tumor markers and she gets me all the forms. My hemoglobin is dropping and that explains my fatigue. My platelets are going up and that is a good thing as it means my bone marrow is doing better. My tumor markers are going up and that is not a good thing.

Dr. Grenier comes in within five minutes of me sitting in the new room and I am surprised because I’m usually waiting there forever.

‘How are you feeling Renee? Oh I know you want your results right away from the scans. They are stable. That is good news.’

Yes, yes it is indeed.

Ring Around The Rosy

Honestly, I don’t know what is wrong with me. I am so emotional that I have been crying over the drop of a hat for several weeks now. Probably since I had that wicked flu and was throwing up non stop for days. It reminded me of everything that I try to forget.

I keep repeating my version of the nursery rhyme ‘Ring around the rosy, pocketful of cancer, hush-a hush-a, we all fall dead.’ Why I’m torturing myself I really don’t know.

Right now my back is killing me, so does that mean the cancer is on the move. Like my dear friend Pat says ‘You have a sore on your hand and you think it is leprosy. A headache and you think it is a brain tumor.’ Any ache and any pain is cancer in my mind.

Is this the time? Is the bullet from the gun that is aimed at my head going to hit me square this time?

It has been well documented, my relationship with the monster under the bed. But this is something different. I think I am suffering a personal malaise.

My tears do not belong to the family of boo hoo hoo, nor do they belong to the family of hoo hoo boo; rather they belong to the family of silent, eyes welling up, tears just falling off your chin in mourning.

My head floods with the images of the people I have known and loved. The slow inevitable decay as things got worse; the surprising speed with which it all ended. Like receiving needles, anticipation of the needle can be the worst, only in this case I know it isn’t the worst, it is only the beginning.

I was never given any guarantees. I take the optimistic side of all of my medical info. Not that it matters one little bit. Not that there is a single thing I can do about it. The sheer helplessness and impotence of the situation can be paralyzing.

Of waiting to be told that this will not end well. Getting an elbow to the ribs reminding you that they said it would not end well right from the beginning where it already was not going well. Reminding you not to be surprised, you have been told all along.

‘Ring around the rosy, pocket full of cancer, hush-a hush-a we all fall dead.’

My soul and I have been talking and we think that because I love my family and my life so much I just can’t bear the thought of leaving them or it. My husband, my children, my granddaughter; it is too much to bear.

My family scene was set and all the characters were comfortably in place. A middle-aged couple hoping to retire one day with lots of grandchildren to remind them of their youth. Three adult children and one son-in-law with another son-in-law on the way. Two careers. A house. Extended families, friends, dreams, and aspirations.

There is just one other character yet to introduce. Crawling through a crack in the foundation, waiting in the wings offstage just behind the blinds by the air vent, smelling like cells gone haywire, and taking up residence in my right breast. The bad guy, the one with enough power to, at the very minimum, kill me and destroy everyone else too. There is no doubt that he will kill me one day, but destroy my family he will never do.

‘Ring around the rosy, pocket full of cancer, hush-a hush-a we all fall dead.’

When I was first diagnosed I was devastated. Then I had treatments and was so sick that at certain points I didn’t really care anymore; as a matter of fact I sometimes wished that a stranger would creep up to my bedroom and blow my brains out. Then my chemo stopped because my heart needed a rest (in more ways than one) and I started to feel better.

And even though I have reached a place where the pain and side effects are more or less managed, who’s to say that they won’t show up again sooner than later, out of the blue, ready to pounce on me again because I have tricked myself into believing that I might be one of the lucky ones. Cancer is a tricky bastard and the universe is even a trickier bastard and who knows what the two of them might cook up.

This was always a losing battle. I always knew it was. It’s just that living without hope isn’t much of a life. It is a hard thing to fight when you know you’re not going to win.

My body, my mind, my emotions, they are all tied up in knots and braced against more pain and illness. I remember the illness. And I don’t know if I can live through that again.

‘Ring around the rosy, pocket full of cancer, hush-a hush-a we all fall dead.’

I was a child who grew up in a dream and became the woman who married the man with whom she had three children and raised them in the dream too. I have always been more of a denial type of person; you know, pretend it’s not there and make it to the finish line.

I remember being one of many sisters, but now I am the one sister. The sister that is dying while the others are not. The sister that was, and will be again, stuck in a bed while the many sisters can get up and walk away. I remember clearly the distancing between me, sick as a dog on the couch, and the others sitting close by. Close by, but never ever close enough to know.

‘Ring around the rosy pocket full of cancer, hush-a hush-a we all fall dead.’

I must comfort myself with what I have always comforted myself with ‘words.’ Thank you Francis Bacon for these:

Begin
doing what
you want to do now.
We are not living in eternity.
We have only this moment, sparkling
like a star in our hand –
and melting like a
snowflake.

I remind myself that partly cloudy is partly sunny and that here on this earth right now I have been given the opportunity to live with angels. This life here and now is good and the people I am able to share my life with are good. I have to believe that this time here will not be all there is because my soul will never be full of them. My soul will yearn for them always.

Maybe I am being morbid, but it’s really that when you have a terminal illness, well, that’s a time when you just can’t live for the future any more. This was and continues to be a huge burden for me. And sometimes I really don’t know how to be with it.

Roger Housden states “To be vulnerable to the mystery of our life as it presents itself, requires forgoing our hopes and fears for the future and being willing to taste what is here before us, in all its poignant bittersweetness.”

I am still here (thanks darling Jill). I need to show up and be present every day and maybe, just maybe that will be enough (but I don’t feel it will).

The words of ‘Ring around the rosy’ date back to the Great Plague of London in 1665 (bubonic plague). The symptoms of the plague included a rosy red rash in the shape of a ring on the skin (ring around the rosy). Pockets were filled with sweet smelling herbs or posies which were carried due to the belief that the disease was transmitted by bad smells. The term hush-a hush-a was really ashes, ashes which referred to the cremation of the dead.

Tick Tick Tick

Tick in my pocket even when I don't have one. Tick in my ear even when I'm not listening. Tick under my pillow even when I throw it to the floor. Tick in the shower mixed in with my shampoo.

TICK TICK TICK. CAN YOU HEAR ME?

Yes, I hear you, now shut the fuck up. Our agreement was that even if I ignored you, I would hear you. The agreement was that only I would have to hear your tick. I thought I was the sacrificial lamb. My understanding was that my husband and children would never have to hear you all the day long. I hoped that if I could never get a break from you that they possibly could.

Tick in the diaper bag. Tick in the red purse. Tick in the schoolbag. Tick in the thermos.

I am the one with the bombs strapped to my body. I am the one whose shoulders are so tense that they now hang around with my ears. Why isn't that good enough?

Why are you such a masochist, why do you need to break my family while you are breaking me?

Tick Tick Tick Tick Tick Tick. Shut-up for Christ's sake. Just shut-up.

My family needs me and I need them. We smother each other with hugs and kisses and we still want to hang out and ask each other lots of interesting and important questions. I know that won’t last long, I told you I can accept that. I just don’t want my children to be constantly under the tick with me. This I find very hard to accept.

The time I have with my children is swishing past at an alarmingly fast rate and your constant ticking in our heads does not make us appreciate each other all the more. We are unlike the families that I hear about in stories of cancer where the people with cancer appreciate their families and now see that the sky is blue and that birds really can sing. You don’t realize that your ticking is nattering to a family who always appreciated each other. Where we come from the skies have always been blue and the birds have always sung.

I know the fuse has been set, I know the timer is ticking. I can accept that. But what I cannot accept is that you are trying to strap yourself to my children’s bodies too. They are off limits. DO YOU HEAR ME?

Tick Tick Tick

Sound of Your Own Wheels

Me and my posse (Shelly’s word), my cancer posse that is, all dread our C.T. scans.  We have them every four months and they tell our doctor what is happening inside our body.  Specifically we all get the liver, lungs, and other organs checked to see if the cancer has progressed in any way.

The test itself isn’t the demon that we are afraid of, but the results are.  The results are the monster under the bed personified.  So this is always a very stressful few weeks between the test and the doctor’s appointment.

The results of the C.T. scan will let the doctor know if the treatment we are on is working or if our treatment needs to be changed.

My friend Helen, whom I love and whom is no longer adding her wonderful presence to this earth because her doctor refused repeatedly, even after she begged him to give her a C.T. scan.  Don’t get me wrong, I know the scan would not have saved Helen’s life.  We have cancer, we are going to die.  What it would have done is given the doctor a head’s up as to what was going on in her body and may have bought her more time.  His answer to her was “Why go looking for trouble?”   Well, Dr. Ostrich (not his real name), like everyone else’s doctors say, the test will let them see what is going on and change treatment so that we can try to keep a step ahead of the cancer.  Apparently it is not a good idea to be an ostrich in the medical profession.  By the time Helen got her C.T. scan it was done through her family doctor at St. Boniface Hospital and by then it was too late.  The cancer had collapsed her lung and was throughout her liver.  Jill, Angie, Helen and I hated that bastard.

I had my C.T. scan yesterday.  The usual suspects were all there.  I couldn’t eat for four hours ahead of the test.  I had to sit with my arm in hot water and then they (three nurses all had to try) poked me four times before they got the needle in.  This time they got it in somewhere by my elbow.  The needle is put in because during the test they will inject a dye that will help them see the images of my body better.  I drank two cups of some water mixture with what I think was iron.  Then I sat for a few hours.

Computed tomography (C.T.) is an x-ray procedure that produces detailed, cross-sectional images of your body.  Instead of taking one picture, like a conventional x-ray, a CT scanner takes many pictures as it rotates around you.  A computer then combines these pictures into an image of a slice of your body.  This test can help tell if your cancer has spread.  After the first set of pictures is taken, you receive an IV injection of a radiocontrast dye that helps better outline structures in your body.  A second set of pictures is then taken.  You need to lie still on a table, and the part of your body being examined is placed within the scanner, a doughnut-shaped machine that completely surrounds the table.  It looks like a big wheel.  The IV injection of contrast dye will make you feel flushed and also makes you feel like you have peed your pants.

The technician told me that each C.T. I have had equals to 1,000 chest x-rays.  So, at this point, I have had 8,000 chest x-rays in a two year period.  Apparently they could cause cancer.  Oh, really.

When I was getting the C.T. scan and keeping my eyes closed because it is like a big wheel that spins around you and when I looked up I felt dizzy, I thought of the Eagles song Take It Easy.  These were the phrases spinning on my wheels:

Well, I'm running down the road tryin' to loosen my load.

Take It easy, take it easy.  Don't let the sound of your own wheels drive you crazy.

Lighten up while you still can don't even try to understand.  Just find a place to make your stand and take it easy.

We may lose and we may win though we will never be here again.

Well I'm running down the road trying to loosen my load, got a world of trouble on my mind.

Take it easy, take it easy don't let the sound of your own wheels make you crazy.

Oh we got it easy.  We oughta take it easy.

I told Nadalene that I am driving myself crazy with this and she said just one more thing that helped me.  “Mom, the test is not going to give you anything.  What you have and what is going on with the cancer is already there.  The test is not your enemy it is your friend.  It will let your doctor know what her game plan needs to be.  You have to let this go, give it to God because there is nothing that you can do about it right now.  Whatever it is we can deal with it, you have already dealt with this.”

I need to give my spinning wheels a rest before the sound of them do drive me crazy.

Under a Cloud

Wahid = ‘’.   Angelique = italics.   Nadalene = bold.   Nathan = “”.

When I got up yesterday I took my pills and was going to crawl back into bed.  My stomach was sore, my brain was sore, and my spirit was broken.

Nathan was going to school (he is student teaching a Grade 5 class).  “What’s wrong Mom?”  I’m worried about myself and I keep looking at those spots.  “Mom, you will drive yourself crazy if you keep doing that.  You can do this Mom.  You have done this before.  Anyway, you don’t even know if that is cancer, it looks like other freckle spots you have.  Bye Mom, I love you.”  Bye, have a good day at school.

I knew where I was headed if I went back to bed.  I have been giving the monster piggy-backs for a little while now and I know that if I listened to his whisperings of going back to bed that he would screw me the minute I laid down.

I don’t want that to happen because who knows how long the screwfest will go on.

Stay awake, stay awake.  I know!  I will do Nadalene’s taxes.  That should be much more pleasurable than being screwed by you-know-who.

Nadalene phones.  Hi Mom, what are you doing?  I’m doing your taxes.  Oh great.  Am I getting anything back?  I don’t know, I just started.  I am feeling sick to my stomach and am trying to take my mind off of myself.  Mom, you will be okay, no matter what.  This is nothing new.  You can do this.

Angelique comes over with Josephine.  Mom, are you okay?  No, not really.  I know I am feeling sorry for myself, but I just hate this.  Well, no kidding.  This is like living with a gun constantly being wagged in your face.  You keep brushing the gun away and it comes right back in your face.  Either shoot me or move the gun.  Exactly Angelique, that is what it feels like.  It feels like the gun, but add Russian Roulette into the mix.  Because you know that if you missed the bullet this time, it will come back to you.  Let’s get out of the house Mom.  Okay.

In the car, I say that I am so sorry that my children have to live like this.  I feel guilty that I have cancer.  They can’t have a good day without me saying something.  I wish Angelique could just be happy with Josephine and be oblivious to all of this.  I am happy with Josephine Mom.  This is reality though, you have cancer and we have to deal with it.  It doesn’t take anything away from my enjoyment of Josephine.  I have to live for today though, I can’t anticipate a day without you here.  I have to stay in today.

I wish I didn’t have to say stuff to you guys though.  I now understand how people with cancer live under a gag order even if the gag order is self-imposed, because you don’t want to keep hurting your family.  Mom, that would be crazy.  We need to know this.  We can share this, why would we ever want you to carry this alone.  This is our life now.

Nadalene phones.  Where did you and Angelique go?  I tell her.  Was it fun?  It was okay.  We talk back and forth.  Are you feeling any better?  A little.  Mom, seriously you need to start drinking.  I laugh.  No, Mom you need a glass of wine in the evening.  Something to take the edge off.  You should start drinking.  Yeah, I would, if I liked the stuff.  I don’t know how you deal with this everyday so intently.  Ha ha ha.

‘Dearest, how are you feeling now?’  I’m okay.  ‘Where is the heavenly father?’  He’s on a smoke break.

With his arms holding on to my neck, a little looser than they were in the morning, I adjust the monster on my back and carry him up to bed.

Can't Breathe

I feel sick to my stomach.  I have shivers that are going through to my fingertips and to the bottom of my stomach.

I spotted it when I was out for Easter dinner.  It looks like cancer to me.  It looks like cancer on my skin, but different from the cancer that was on my skin before.  It is on my left side and I only spotted one spot.  It is a fair size though.

I was telling Nadalene that I get the C.T. scan on Tuesday and she asked when I see the doctor because she noticed the spot on my chest.  The shivers went right through to the bottom of my stomach all over again.  As I type, my stomach is in knots.  If she noticed it, it can’t be my imagination.  It has to be real.  I feel sick.

I am so tired of it all.  I can never just have a good day, cancer is always there.  It has its tentacles wrapped around me so tight.  It has to constantly remind me who is boss.  It crowds me in.  It is circling me, circling me.  No wonder I don’t know how to breath.

I don’t know what to do.  I will have my C.T.  I will see the doctor.  But what does this mean?  Is it cancer (I’m sure it is).  Does that mean the Femara isn’t working for me?  Why not?  So many people can be on it for years and years. I want this to work for me.  Am I going to go there and she tells me it is worse or on more organs.

I hate this.

Does this mean more chemo right away.  Is it cancer?  Again, I’m sure it is.  Nadalene said it looked the same as the one I had before on my back.  Of course I’m touching it and I see that there is more than one.  There are about five.

I am just going to go lie down.

Life doesn’t feel worth this constant heartache.  I am a mess.

It is five hours later.  I am still in knots.

When I went to bed Nathan came up and lied in bed with me for about an hour.  We talked and he asked what was wrong.  I told him how I felt.  He really did make me feel better, but then I just dragged myself right back down when he left.  I couldn’t sleep, I tried so hard to be unconscious.  Maybe I just tried too hard.

I wasn’t able to eat supper, I think I have given myself diarrhea.  This is not a game I play often, so I don’t play it very well.

Cancer is such a nightmare.

It is now Monday morning.  I wrote the above yesterday and my emotional condition is unchanged. I feel like I did when I was first diagnosed.  I feel a sense of hopelessness.

Day Surrending Into Night Surrending Into Day

I am in a very ugly mood.  Very ugly.

I was going to write about peace and I thought fuck it.  Why should I write about something I know nothing about right now.  I was going to give you all the finger and tell you that with the exception of my immediate family, I hate all of you.  I seriously do, I hate all of you.

How dare you not have cancer?  How dare you be able to live a full life?  How dare you have 30 years on me?  How dare you?  How dare you?  How dare you?  And the triple-dipple how dare you.  How dare you continue to be a mother and a grandmother?  How dare your children get to have you and mine won’t get to have me?

I remember before Josephine was born and Jacquie and Colette would say “‘I am so happy for you.’  ‘This is so wonderful.’  ‘You will love being a grandma so much.’”  What I remember most about that is how I wanted to slap them in the face.

I remember holding out for a blood transfusion so that I could have it before Josephine was born, so that I would be able to have more energy for Angelique and the baby.  Thank God for Nadalene and Don’s Mom because I wasn’t able to help at all.

I remember feeling like such an imposter with that wig sitting on my head.  I couldn’t do anything right.  I took off her hat to see her head and was told to put it back on right away because she would get cold.  I started to talk to her and tell her how beautiful she was and was told not to stimulate her too much.  Here Wahid, you hold her.

I also know that if I didn’t have cancer and I didn’t have a wig on my head, and if I didn’t feel like such an imposter that I would have been the first one to say keep her warm, you can’t stimulate her too much because she is a tiny baby, only 5 lbs 6 oz.  I would have been secure in my grandma-hood.

Journal Entry – July 14, 2007

Josephine’s birth was a really bittersweet time for me.  So happy to have her; so sad that I won’t be here for long to see her grow.  I’m angry, bitter, and envious to almost everyone without exception because I won’t get to see Josephine (whom is so precious to me) grow up.

She will never know who I am.  For her, I believe I will always be someone else’s recollection.  As in – your grandma, etc. etc.  Basically I guess I will be an etc.

I’m feeling very sorry for myself.  Josephine has brought home to me, my future or lack thereof.  I won’t see Nadalene or Nathan or Angelique’s families.  Wahid will be a grandpa with no grandma.

Reading this seems like Josephine has brought this on, which is ridiculous.  It is that my strong love and desire to be with her has made me realize I don’t have all the time.

Because I have not had a love like this in a long time it kinda breaks my heart.  I will enjoy Josephine every second of every minute and every minute of every hour.

---end of journal entry---

Maybe I am just so angry because it is Easter, a special holiday.  Maybe I am just tired because I have been carrying the monster-under-the-bed around all week.  I want to be around for so long.  For pete’s sake, I am the person who always said I wanted to be cloned so I could live forever.

It just came to me that in my faith (Catholic) we are taught that Christ died for us so that we could live forever.  So that we could live in the Kingdom of Heaven with God our Father and be with our families forever.

Wahid, Angelique, Nadalene, Nathan, and sweet Josephine – I love you all every second of every minute and every minute of every hour.   And, I always will….   In this life and the next and the next and the next.

Come on Out -- Wink Wink

As much as I like to bury my head in the sand.  I need to see the monster under my bed.

When I was a little girl and I slept in a bed full of other little girls I would sometimes have nightmares.  Not very often, however, I did have them.  They were ususally filled with the usual suspects: giant spiders, cracks in the sidewalk that would be full of bugs, and the worse one of all was stepping on a crack and breaking my mother's back.  No mommy for you bad girl, bad girl.  No mommy for you because you broke her back.  Looking back, I can now attribute that particular dream to a little girl's game being played on the way to school.

Now my nightmares have taken on a different cast and as well, most of them happen while I am awake.  Where once my nightmares were based in fiction, they are now based in reality.

When I was first diagnosed with breast cancer, I remember thinking 'Okay, I can do this, lots of people have it and there is a good success rate.'  I went on the computer right away and saw that inflamatory breast cancer had a 100% mortality rate.  

This is where I first met the monster that lives under my bed.  I left the computer and went straight to bed.  Within seconds the monster had crawled out from under my bed and was lying on top of me.  Just as he was getting ready to tear my head off I was saved.  Nadalene came into my bed and put her arm around me.  As she did so, I felt the monster slinking back under the bed where he belongs.

From that day on I knew I needed to keep my eye on him.  So I look at that ugly monster whenever I see it making a move to crawl back into my bed.  I look him straight in the eye and we have a conversation.  He tells me what I don't want to hear.  He even has a mirror that he makes me look into.  This conversation usually goes on for a few weeks.

The conversation always happens in the same way and is always proceeded by a very dark sky.

And the most terrifying threat of all is the beast that can't be seen—the hideous Thing lurking hungrily in the quiet shadows beneath my bed.  I need to catch his eye, I need to get him to come out and talk to me.  He is mad though because I always banish him to that small corner at the foot of my bed.  I also never try to feed him.  

So I call him, I tell him to come out.  Come out, come out wherever you are.  I flirt with him and tell him that I want him as a companion. I even tell him that he can come under the covers with me again.  I promise him that we will embrace and not let go.

He's fallen for it.  I who can't hear anything, can hear the dustbunnies dropping to the floor.  I hear the dust mites that he terrorizes every night scurrying away.  They are happy he is leaving.

He is here now, I don't need to keep up the farce of liking him.  But I find that I do like him.  We talk about me and he relates to my pain.  We keep talking and he tries to make me feel worse.  He is succeeding.  This goes on for a few weeks.  Finally he says the words I need to hear so that I can banish him back under the bed.  

"Its big its scary and it is coming whether you like it or not.  You are going to die and no one will remember you.  You are going to leave your children."

Well, I'm not leaving them today.

Now you miserable little prick, get back under that bed until I call you.  And don't think you can pounce on me out of nowhere.  I know where you reside and I'm keeping my eye on you.