Times Three No. 14

Hard times, hard times!

Imagine being a loving daughter who sees your Mom almost every day or at the minimum five out of seven days. And then you are dependent on Transit rides for your wheelchair to get you to and from the hospital so you can see your Mom.

Imagine being a loving daughter who wants to get that same Transit ride to the hospital everyday but you are on chemo that is making you terribly sick and are on pills that make your anxiety go through the roof. And then you are lucky if you get to see your Mom once every few weeks.

Imagine if that is the best mother in the world and she is dying and you can’t get to see her. Imagine that you felt the same way when your 25 year old son was a few floors below you at the same hospital you were in and you couldn’t get down to see him; not because of the Transit but because you were getting chemo and radiation and were sick as a dog and when you felt slightly better which you did everyday and went to see your boy it took everything to be able to get there and then you suffered for hours both physically; but mostly mentally.

Hard times, hard times!

Imagine that it is not easy for our darling Jacquie.

Jacquie whom when she gets to heaven God will say ‘well done,’ is not being well done too.

Jacquie feels like a lot of things are getting away from her and she is being left in the dust. Many of us with cancer feel this way especially when we are feeling super ill to boot. And just so you know it always feels especially personal.

Together strong Jacquie.

What Kinda Bone

On December 1, 2009 I had the gastroscopy where Dr. Doerksen assumed that there were cancerous tumors in my stomach. Until pathology came back they would not know for sure. On December 16th I called him to find out what was going on as I just couldn’t stand the bat problem. He explained that pathology was having some issues but ‘Yes, in fact there is cancer in the stomach.’

Over the past two weeks I have had more CT scans, bone scans, and blood tests.

Wahid and I were talking yesterday morning before we went to see Dr. Grenier and I was saying how I just felt totally Zen. I just felt whatever is, is; and like he always says we will just deal with it and go through the process.

I have been asking myself the last few nights if it is worse because now another nail has been added to the coffin or if it was worse when I heard almost four years ago. Of course, really none of it is good, but it is better for me now then four years ago. Not the cancer situation of course, but just the realization of this is your life and you have to make the most of it.

On New Years Eve Paula called and asked to move up my appointment on the 4th to 9 a.m. but also wanted to let me know that they still did not have the pathology report done, but that pathology had promised it to her by the end of the day.

Yesterday morning when Wahid and I went to see Dr. Grenier I was seriously expecting to hear her say there was nothing they could do. That wasn’t the case and so that is a good thing.

I received pieces of bone this time: a chip here; a larger piece there; one with marrow; one they didn’t recognize; and one dry and brittle.

Because it is almost unheard of for breast cancer or Inflammatory Breast Cancer to go to the stomach they have got to redo all of the pathology samples and compare them to the original tissue samples that were taken four years ago.

The question on the report is they do not know if the cancer cells are breast cancer cells or stomach cancer cells or even a totally new cancer that has spread from somewhere else. Is this a new cancer originating in the stomach or from another secondary source?

Funny thing, not har har funny, this is all coming from a family with absolutely no history of cancer.

No treatment can be done as yet and will take minimally three weeks to find out what type of cancer it is. Dr. Grenier believes that because I have Stage 4 cancer it is probably 70% chance that it is IBC but there is a 30% chance that it isn’t. Of course they would be treated completely differently so there is nothing we can do now. On the other hand, she hates to wait because in IBC it is just days to weeks to months that things escalate.

In the meantime I will have to keep batting off the bats and choking down the food.

It is not in my liver and so I am thankful for small mercies.

Push on with all your determination, and
just when you feel defeated and blocked,
throw yourself into the gaping abyss before you –
into the ever-burning flame of your own nature.
All illusionary thoughts, feelings, and perceptions
will die with your Me, and your Self-nature will appear.
You will feel resurrected, truly healthy, and filled with joy and peace.

~~ Bassui Tokusho ~~

*artwork by Philip Bishop

Bats

Did I tell you that I have a colony of bats who hang upside down in my guts? Well I do.

All day long they fly around and hit the walls of whatever is inside those guts. Bang, bang, bang, BANG, BANG, bang, bang……..BANG, BANG…..

It is not comfortable to say the least.

You know it is hard to maintain my girlish figure of 217 pounds and right now I am worried about doing so as I am always starving and can’t get things down my throat. Either because the tumors are pressing on the esophagus and won’t let me swallow or whatever I’ve eaten hits my stomach and makes me nauseated.

I feel like I did when I was on taxotere and now I’m not even on it and feel like shit.

Bang, bang, bang, BANG, BANG, bang, bang……..BANG, BANG…..

I have spent a few nights retching my guts up and nothing comes up. It is blocked and so all I do is retch and retch and feel like I cannot breath.

Angelique was over the first night with the kids and ended up having to clean me up and the floor, poor girl. Nadalene came over later and I was able to sleep.

The next time Nadalene came over and lied beside me and helped me feel better. Angelique came over later with Domenic but I was asleep by then.

Nathan and Wahid take earlier shifts listening to me call for pail, water, cloth, they hear me choke out ‘Sit on my bed and don’t move in case I can’t breath. Don’t leave me alone.’

I need them to listen to me try to catch my breath. I need them to bare witness to my misery. It is not easy and I just want to feel better.

Bang, bang, bang, BANG, BANG, bang, bang……..BANG, BANG…..

I have now added a new trick to my repertoire I foam at the mouth. Funny, yes and no! Funny in the ‘what the fuck is that next department’ but not funny in the ‘for Christ’ sake it feels like I’m choking on foam.’

Also I am very selfish and always have been. I catch myself complaining to dear Jacquie all about this and hardly ask how she is because I’m so wretched myself. And Jacquie who is as unselfish as they come cries over me.

Guilty Bone

When I saw Dr. Grenier on Wednesday she gave me the bone with stable marked on it and I was relieved. I was relieved. I am relieved.

I also felt guilty. I still feel guilty.

I went up to spend time with Sheldon and he was sleeping. Gilbert was sleeping on a chair beside him. I felt like I didn’t have a right to be there.

I went up to spend time with Jacquie and she was waiting for me to come up and asked if I saw the doctor and I said ‘No.’ I felt like I didn’t have a right to tell her I was stable.

I told Nathan when I got home and he was happy and said ‘Finally some good news. I thought you were going to tell me you had a month.’

He phoned Angelique and handed me the phone and I told her and she said ‘That’s great Mom, and I knew you were having the appointment today, as I was so worried with everything going on, I felt like I just couldn’t wait for you to spring it on us so I had to find out the date and so looked at your papers.’

We went out for lunch (Nadalene and Wahid were at work) to celebrate and I was crying when I told them “Yes, I’m happy, but I feel sad too.” They understood.

I told Wahid and Nadalene and we were all relieved.

The next morning I told Jacquie and she said ‘That is great.’ I told her how I felt and how she helped me so much and that I should be dying right now and her and Sheldon shouldn’t be in this mess. How sorry I am that she spent so much time with me and my family while I was sick, and how I wasted her time.

She told me ‘Don’t feel like that Renee, because there is nothing about that time that I would change. I was there for you because I wanted to be and you are here for me now.’

I get home and Nathan was upset and told me Jordy had come over and his Mom’s cancer had come back. Flo is one of my best friends and her breast cancer has come back in the bones and the liver. I phoned Flo right away and she asked if she could come over. “Yes, come right now.”

We are devastated, and we talk and talk. She said she never knew what it felt like. She knew cancer and she knew how bad it felt but now this feels like something else entirely to be Stage 4.

She asks if I heard my results yet and I tell her no. I didn’t want her to have to feel like she was happy for me when her world was falling apart.

Flo came over the next day and we talked and I told her then.

My Mom was happy when I told her. She was very happy and said ‘I am praying for a cure now for Sheldon and Jacquie.’ My Mom is beautiful.

My Mom got rushed to emergency on Saturday night and Nathan called me at 9 p.m. to let me know. I went straight to the hospital (the same one Jacquie and Sheldon are in). My Mom has pneumonia and I now pray that she will be feeling better soon. I go see Jacquie and she is having a hard night. I pray that she will be able to stand soon. I don’t go up and see Sheldon because I think I will fall to my knees if I do.

Before I leave the hospital I go and see Mom in the emergency room again and find out she is being admitted. My Mom is sitting up in bed and Jeannine, Colette, and Joey are eating chicken. My Mom says did you tell Joey your news, and so I am under the gun and say ‘Oh my results are stable.’ He says ‘Oh yea, that’s good.’

I am embarrassed. I have wasted people’s time. And now we have a real crisis on our hands.

Sheldon is very sick.

Scanxiety

I have discovered how to get rid of scanxiety from CT scans and bone scans. I do not recommend it however.

I had my CT scans and bone scans last week and even though I had to wait to be poked a number of times as the usual was happening (not finding veins), I barely noticed. I sat in the chair with a big board going across me like a highchair for adults and just let them poke and poke while I stared into space.

I know my results will be coming up soon and I haven’t even checked the date, which I better do, as I don’t want to miss the appointment.

If I said it didn’t matter to me what the results are; I would be lying. It just is now it seems more like ‘whatever’. And yet in the same breath that is not true either.

I want to be stable of course, of course I do. It is just that I don’t want Sheldon to have cancer, Jacquie either, but Sheldon even more.

So it seems that to get rid of scanxiety one has to be so worried about someone else that they forget about themselves. I don’t recommend it.

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.

Limbo Anyone?

And I don’t mean the dance.

Limbo is any status where a person or project is held up; and nothing can be done until another action happens.

Enter my head for a moment if you will. “Will the tests show that the cancer has stayed the same or that the cancer has changed? I am surviving between having more time with my family or less time. I face two paths and don’t know which will be forced upon me. So I travel none. I stand entrenched in limbo.”

I visit limbo about every four months. My entry into limbo happened on March 30th when I received blood tests for tumor markers and will continue to the end of April. In between I will have more tests. On the 6th of April I had a cat scan and on the 7th I had a bone scan.

And the tick of the tock will tick tock, tick tock, tick tock until I get my results. Has the cancer remained stable (I pray that it does) or will the cancer be on the move this time (I pray that it won’t)? Tick tock, tick tock, tick tock.

The limbo period is the waiting. Waiting for the inevitable and thinking the worst. It is the time that you need to live in the NOW. When your mind drifts away you contemplate your mortality and then you become crazy, numb, manic, crazy, numb, manic. Then you grasp for the NOW like a drowning man; get your cool back until you don’t.

On Monday I went for my cat scan and it went pretty well this time. They started with me bending over the sink with my arm in hot water; then my arm was wrapped; then they poked with the tiniest needles they could that would still allow the dye to go in. And voila, it was in within three shots (ouch, ouch, ouch).

I drink two glasses of water with iodine and feel like I may throw up, but I don’t.

I have to wait for an hour and in that time an elderly man and women start telling me about all the horrible things he has gone through. He is 75 and has colon cancer and it is the worst kind because they found it too late and it has spread. Then his wife and he tell me in tears that his time has been stolen because his and her parents both lived to 95 and now he won’t make it to 95. I sympathize and I must state here that I really did sympathize, they were sweet and heartbroken and it was hard to see such pain in another’s eyes.

They call me, I lie down and the nurse has to come and check the needle because as it is, they didn’t get a good hit at the vein but if one of them holds it, they think they will get the dye in. It is successful.

As I lie there I ask them to check out how many cat scans I have had in three years. They tell me that I have had 15. Each scan is equal to approximately 1,000 x-rays. 15 x 1,000 = 15,000 x-rays in three years.

I read somewhere that modern medical practice has changed cancer from an acute to a chronic catastrophe. (I love the word catastrophe.) And though I am so very thankful to be alive, I am not thankful for the constant gun to the family head. My family lives in a state of limbo where interactions, plans, and hopes are continually imbalanced.

On Tuesday, I go at 12:30 to get my bone scan and they always call an operating room nurse to come and put the nuclear radiation through my PICC. I get there, the nurse gets there and then they tell us the radiation is still at Health Sciences and they are couriering it over so could we come back at 1:15. It is 1:15 and I am back and get the radiation no problem. Leave and go home and go back to the hospital for the third time that day at 3:30 to get the bone scan done. I ask how many bone scans in the last three years and they tell me 10.

You just want to get on with a normal life, for Christ’ sake, if only you could. But over the next month I will feel like I am running in quicksand. I am indecisive over the smallest things. I have nagging visions of the cancer on the move. I bore people around me almost daily with my insecurities. I want to curl in a ball and rot in a corner of the couch.

My Raven sister Laurel stated on her blog “I think most of us make our lives out to be more complex than they really are. I know I do. We get overwhelmed by situations that present themselves to us without warning or invitation. What if we stood on the edge and saw intricate beauty in life’s challenges and shouted Thank you Universe!! Message received.’ Then we could tend the rice fields in baby steps, one paddy at a time.” I love that.

Limbo is where you realize that your world is on hold. Not the world, just your world. It is the month of wondering whether the cancer is on the move that puts me in a daze.

Wahid asked me last night ‘Dearest, how does it feel to have big children but now you are sick?’ Tears start to drip and I say ‘It is harder than I can speak about.’

Limbo is the time that every ache and random pain is cancer. It is a constant battle to remind myself that I feel like this every four months with the tests and that before it wasn’t cancer it was just aches and pains. Unfortunately ever since being diagnosed with inflammatory breast cancer every pain comes with an instant thought: cancer.

I am adrift; living without purpose or direction. I am quite literally living in limbo and I don’t fucking like it one bit.

Vegas

So my sister Mickey has been tossing around that she wants to go somewhere with me. I’m game and keep telling her yeah, let’s do it.

I tell her that I have a bunch of stipulations which are:

~ I have to find out when my CT scan and bone scans are.

~ Need to know Doctor’s appointment for results.

~ Angelique is a teacher so I won’t go during spring break because she will be off and that means more time for me to spend with Josephine.

~ Will not be gone on the 28th which is my birthday; because that I will spend with Wahid and the kids.

~ Cannot go at Easter because of the same reason listed above.

~ I need a direct flight and do not want any stop-over.

She is okay with all stipulations, just wants to get away and have some fun with me. Asks me when my tests are and I tell her that I will check into it. I do and the tests are not until April, but I am not sure when yet.

I tell her that now is the best time to go because the tests aren’t till April and the test results may change everything if I am not stable, and if that happens then I wouldn’t go, because who knows what shit I would have on my plate to deal with then.

She calls my bluff and says she will be over Thursday and we will get it all organized. Yippee yahoo, I say. We decide we will go to Vegas.

Jacquie, another sister, hears of the plan so states that she is hitching her star with ours and is coming along.

Since it is no longer just Mickey and I, I also mention it to Suzie, another sister. She is non-committal.

I then ask Shelly, another sister, if she wants to go, but she is unable to because of work commitments.

I am going to ask Colette and Camille, yes other sisters, after I find out what dates we would be going, then I will phone my childhood friends Heidi and Shirley and see if they want to come too.

I really need to take a second here to figure out exactly how to best describe the following scene to you.

I am crying because I just find out about a little baby who is not even a year old who died of Stage 4 cancer. I see pictures of the little girl on her parent’s blog and I am devastated. They also talk about the death of a 14 year old boy that had cancer as well. I am sick about it. I am also sick about how they talk that Jesus had a plan and that the baby is with Jesus now.

Am I the only person left on the face of the earth that does not believe that Jesus or God had anything to do with this? That if Jesus or God had a plan and that it was for a baby to physically suffer and the parents to mentally suffer well then I would love to know what it is. If you feel the need to tell me that it is a mystery; well don’t bother. Keep the thought and choke on it.

Anyway, back to my story.

I’m crying and I hear Mickey come in. I wipe the tears and go see her. If she noticed that I was crying she didn’t say anything. Jacquie arrives about ten minutes later.

We are tossing the words ‘so fun, exciting, shows, entertainment, a good laugh, old Vegas, Grand Canyon, car rental, suitcases, road trips, hotel, slots, malls, etc.’

Mickey is sitting at the dining room table, Jacquie is sitting on the couch, Nathan is home from school for lunch, and I’m making tea in the kitchen.

Mickey is busy on the phone talking to Air Miles, I am now looking at papers at the table, and Jacquie and Nathan are talking in the living room. Mickey tells the person on the phone that she will look at different dates of flights and will call back.

Nathan leaves to go back to teach his science experiment at school. Mickey and I go upstairs to the computer room and look at various times the flights would go direct, as I only want a direct flight. We find direct flights leaving Winnipeg at the rate of about three a week.

We go back to the dining room and Jacquie comes and sits with us.

We discuss the flights and all decide that Monday, yesterday, the 16th of March would work out perfectly. Mickey calls and is giving all the details to the lady as we are all able to get on that flight.

My stomach is in knots, my mind is in circles, and I can’t go because I’m going to die soon; so no I don’t want to go. I’m afraid to go. I can’t go. I’m not going.

Mickey is on the phone talking about insurance, I can’t get any because I have a pre-existing condition. She doesn’t think we need insurance anyway.

Don’t be so retarded and fucked up, of course you can go. It is only a three hour plane ride for Christ’s sake. It isn’t the flying anymore, I don’t feel afraid of that.

I smile at Jacquie and we talk about suitcases.

I can hear Mickey getting ready to make the final booking.

I panic and say, you haven’t booked it yet have you? It isn’t booked yet is it? Mickey, put the lady on hold, it isn’t booked is it? She says ‘No, should I phone her back?’ Yes, phone her back.

Phew. That was a close call.

I tell Mickey and Jacquie that I don’t think I can go now. I am blubbering like a fucking blubbering blubberer.

Because I don’t know what the next month will bring, I am terrified to make plans. I need to sit right here and not move. I need to sit right here and gear myself up for the next weeks. I cannot leave my safe and known environment. I cannot!

I know that rationally if I went I would have fun, but not real fun because I feel that I would be walking hand in hand with the monster from under my bed. He has been riding me and dry humping me lately so I don’t want to go on a wonderful holiday where he won’t leave my side. As it is, my upper thighs are sore.

I tell Mickey and Jacquie, while crying and blowing my nose for over two hours that I just can’t go and I tell them it all in a million ways. I mention numerous times that I would feel like I had a gun to my head the whole time.

I see the compassion for me in their eyes and I cry more because I have become such a spineless slug. I am pitied now and I never was before.

They both understand of course and try to make me feel better and not like the worlds’ biggest loser. In the end they succeed.

I want them to go anyway but they will not hear of it. Mickey says that the whole purpose is to be with me, and I know that because we have discussed it too many times to count.

I decide that I can go, but not when the monster under the bed comes with me. I tell them that if I am stable after going to the doctor then I will be on a high and then I will go and want to do all the things we planned.

Having cancer hang over your head all the time especially when it comes to test/result times is one fucking motherfucker.

I was seriously a total basket case and had completely lost my marbles.

And the beat goes on......

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.

What's In A Face

Besides your eyes, nose and mouth, what’s in a face? Usually besides your weight, it is one of the first things that you are judged on. People look at our faces and they see us and we see them. They become real and we become real. We connect. What do you think happens when they stop looking? Are we no longer here?

In other words, if you have a face in a forest but no one connects to that face, does that face exist.

Well if you have cancer, others’ reactions to you may make you feel unsure if you exist or if you do exist, why you are out of your house putting a damper on other peoples groove.

I have been thinking of my sweet friend Jill so much in the last few weeks and remembering the time that Nadalene drove us to see a movie and how we were pointed at because of our appearance.

I want to tell you what it feels like to be gawked at. How it makes you feel and how eventually you start gawking at yourself. Here are my feelings and a few little stories to help you understand.

When Kirsten first shaved my head, and I was on chemo every Friday I not only looked greenish but I also looked like my brother Gerry. I basically had a quarter of an inch of hair. I looked foreign and I also looked androgynous (I’m surprised to see that I’m tearing up). I knew it was going to happen but I was in awe of how sick I suddenly looked. It doesn’t look like me and it doesn’t feel like me. This is what a person with cancer looks like. There is no denying it now. I introduce my children (who are pretending it looks great) to their new father.

Jill had not been feeling well from radiation and I was not feeling well because I had chemo the day before (normally I would never go because I felt like shit – I can’t even say the name of the movie because it reminds me of how sick I felt and makes me want to throw-up) but Jill wanted to go see it and I didn’t want to say no, because I knew we might not have another chance.

Nadalene dropped us off at the front door and I’m telling you it took us probably 20 minutes to get to the ticket counter, we were so pooped out and Jill was having a hard time breathing.

But what I’m really trying to get to here is how everyone stared at us. Neither of us had any hair to speak of and we walked like we just got out of a concentration camp. I understand too well the term ‘walking dead.’ There were two young girls (maybe 10) that couldn’t take their eyes off us. That I could understand.

Somedays I remind the woman in the mirror that the pursuit of happiness lays within. Who I am is determined by me, not somebody else (or in many cases with contact in the outside world many somebody else’s). I know that the physical is just that: physical. But it is my physical.

Yet up pops my ego (also known as my inner critic) with her self-centered narrative always finding flaws and never seeing the beauty in the image in the mirror. Always jumping on the negative and never getting near the positive.

I am unable to wear a bra because of the metastasis to the skin and my right breast is about six inches higher than my left and is also much firmer because of the radiation. I have burn marks on my upper collarbone from the radiation as well. My left arm is half the size of the right. My left arm also has my PICC line in it so it looks very robotic.

When Josephine was born I decided to wear the wig so that no one could see my life by my hair. I wanted it to be about Angelique and Don and the baby and not any doctors thinking oh ‘the mother has cancer.’

I felt so phony and I had to hold my sweet girl with that thing on my head. Her first sight of her grandma was not real. My ego was beside me taking away my feelings of pleasure by telling me that I looked ridiculous and phony. I kept the charade of the wig all the time Angelique and Josephine were in the hospital.

I knew for sure that my shaved head would elicit a few stares. But mostly people avoided looking at me. It is like I became invisible overnight. I look so different from my former self that people I know do not even recognize me. I went from someone with no wrinkles to someone with lots of wrinkles.

People avert their eyes when I walk by. Is it because they know that I am sick and they don’t want to take a chance at looking in case the evil eye gets them and they too end up with cancer. Or is it because they know I’m sick and they don’t want to stare? Have I become so hideous that people don’t want to look at me anymore?

I’m beginning to feel that no one can see me but children. Adults pretend they can’t see me or they avert their eyes, while small kids eyes widen in horror.

When I was having chemo at the hospital I was looking at some pictures of me, my mother, Angelique and Josephine. A couple of ladies who were also getting chemo asked to look at the pictures. They then asked me if my mother was my sister.

Another time I went to the doctor’s office with my sister Shelly (five years younger) and the doctor asked me if she was my daughter.

Kermit the frog says it is not easy being green and I have to agree with him. It is also not easy to be exposed to possible ridicule, to naked viewing, to seeing and feeling things that I’d rather avoid, to not seeing myself as other people see me. I have become visually unpleasant to people. They wish I would stay in my home.

I forced myself to wear my wig to Nadalene’s wedding because I did not want her wedding pictures to have me in it with a bald head and to have her looking at her pictures and being reminded of my cancer. After all for 29 years of her life I did have hair.

I wore the wig and although it was okay, it also wasn’t. On the other hand when I look at pictures I am glad I wore it.

Everyday we get stuff wrong. We forget the dignity and respect that others deserve. We communicate badly and worse than that we ignore (instead of respectfully lay aside) other people’s concerns.

The funny thing that you would never gather from this post is that I didn’t ever care that I lost my hair. It didn’t and still doesn’t matter to me. All of the physical appearance stuff really doesn’t matter in a generic sense. I tend to shuffle instead of walk. I am hunched and totally baby my shoulders so that they don’t hurt.

But with the help of people’s reactions to me I look less rosy. My eyes don’t light up the way they used to. I still smile. I still try.

In Moose Jaw, Jacquie, Nadalene and I were at a mineral spa for three days and not once did anyone initiate a conversation with me. They talked to Nadalene or Jacquie and looked straight over my head, unless of course I turned fast and then they were looking at my PICC with the plastic sleeve over it. As a matter of fact, one day about ten people were laughing and talking and then I came out with Jacquie and as they all tried to pretend I was not there, the silence became deafening.

I want you to know that if you are going through chemo for cancer or are taking medications for other serious illnesses and you don’t look like you use too, that you don’t frighten all people. There are always the people who love you and there are always people who care.

When I first met Jill she was sitting cross-legged in a chair in a group meeting room. My first impression was ‘Wow is she ever beautiful.’ Jill had curly hair and the friendliest smile and the best personality. When I last saw Jill in a hospital room my impression of her was ‘Wow is she ever beautiful.’ Jill had no hair and the friendliest smile and the best personality.

Even when you feel really alone there is always someone out there wishing hard for you. Wishing they were able to share your pain with you. Maybe there is even somebody watching you and thinking how beautiful you are, but you just can’t see them or maybe you turned away just at the wrong moment.

My Bone Is Chipped

Forget about monkeys I think I have evolved from a dog. Not a loyal dog, because I am too selfish for that. But a dog that sometimes gnaws at its own leg.

Actually maybe I have evolved more from the original monkey-dog, I am sure there was one, as I am living proof of its genetic line. I have the skeleton of a monkey, make as much noise as one, and I tend to want to pick at anything left in your hair.

But I have the temperament of a dog that grovels for a bone when I see my oncologist. I whine, I tap my paws, I lick the roof of my mouth (that is as dry as a bone since chemo), I whimper when I don’t whine, and I shy away from that blow that I believe may be coming in my direction. Unlike people, I have a master; I am not my own master.

The volunteer and I are talking and she tells me how she has had cancer twice and is in fear of it coming back. ‘No shit’ I say. I hear my name called.

I get weighed (217) and am told I can wait in Room 2. The nurse asks how I am feeling and I tell her. I tell her too that I think I may have diabetes because I am always thirsty, overweight, and have foamy pee. She tells me to repeat it all to my oncologist and family doctor. I am told to put on the robe and then I wait and wait and wait.

I see my oncologist (whom I love) walk by and she doesn’t look in the room. Oh oh, does that mean something? Was she just walking by the room and didn’t see me, totally possible. It isn’t always about me, contrary to what I think, maybe she just saw someone else and is trying to keep her thoughts about them in her head before she writes it down and didn’t have time to say ‘hey’. She is not the type to say ‘hey’ and is probably, more than likely, just innocently walking down the hall like everybody else at the hospital. Notice that I don’t need to be screwed as I screw myself.

I notice my back paw is tapping the floor. I control it. My front paw on the right-hand side is starting to twitch, it is now tapping too. ‘Calm down already.’ My back paw continues to tap.

A fringe of hair is covering my eyes and I see through them that the door across the hall has the number 7 on it. Okay, I am in room number 2. I should be in number 7 because that is a lucky number. 7 + 2 = 9. 7 – 2 = 5. 9 + 5 = 13 unlucky number (I know now that it equals 14). Oh shit this is not turning out good. Gggrrrrr, woof woof. I need to re-jive those numbers. 7 + 2 = 72. 2 + 7 = 27. 72 +27 = 99. Okay, that is better; I think I have a good chance that the news will be 99% okay.

I only have a drop or two of water left in my bowl and I need to place it on my temples and forehead as I feel like I am going to faint. It is suddenly hot under my fur. My paws are scrapping along the floor and my tail is bent because I always sit in a crouched position.

Room number 2 is starting to feel like a small cage. A cage that is much too small for a 217 pound monkey-dog. I start to gulp because something is wrong with my breathing. For fuck’s sake, I should be in room 7! Calm down, people have been given bad news in each of these rooms. Never mind calm down, this is my life I’m worrying about. It doesn’t matter what room I am in. Okay, get your shit together, you need a clear head.

The doctor comes in just in the knick of time. Thank God, I haven’t lost it yet.

Hello, how are you feeling? Woof, woof. How are the family and that lovely granddaughter of yours? Woof, she is 1 ½ years old now, woof.

Unfortunately they were not able to get the dye in for your CT scan; however, I think the test is fine as it shows no change. There is no need for a retest because there is nothing suspicious there. The bone scan also showed no change. So the results are good, everything is stable.

I lick her face.

I find that I can string a sentence together again and we discuss the new little book by J.K. Rawlings.

I go get my pamidronite treatment which is given in chemo format (it is used to place calcium back in the bones as I have bone metastases). I am quite excited and want copies of my blood tests.

I look at my blood test results and I then start to make myself feel sick and anxious. I begin to play the what-if game. Because even though the results are stable and that is what I want, the blood test numbers are going down on the platelets (I want up) and the tumor markers are going up (I want down). Don’t get me wrong, I am happy, more than happy. I remind myself of what my Dad told me ‘When the what-ifs come knocking tell them to fuck off.’

I need to run with the good. I need to remind myself that I got the bone I came for even if it is a little chipped. I am thankful.

I phone Angelique and I tell her the results, we are able to exhale now. I start crying.

Thank you everyone for your prayers and your supportive comments to me. I want you all to know how much they mean to me. Merci.

200th Blog Post

I know I can’t believe it either.

Dad thought that I should post where I got my blog name. So in honour of my Dad (may he rest in peace) I am going to give you the low down on where I got the name and what it means to me.

Andrea, a young woman with inflammatory breast cancer who died earlier this year, wrote a blog entitled Punk Rock Mommy. On one of her posts she put a Chinese proverb which went like this:

“You cannot prevent the birds of sorrow from circling your head, but you can prevent them from building nests in your hair.”

This resonated with me like nothing else did at the time. I could see how the birds, if they even had a chance to nest may never leave.

Colette was the first person to know what I was going to call my blog; as she helped me set it up one cold morning in February.

This having cancer is not an easy thing. As a matter of fact it is one of the worst things. I had just gone through almost two full years of chemotherapy and I needed to figure out what the hell just happened to me. I wanted to try to write to clear my head, to make me happier, to give me something to do. I wanted more than anything for people to know that I was here.

I wanted people to know that once upon a time in a small city in a big country there was a woman who loved her children so much she felt that if they could read her stories when she was gone they would feel that she was with them and they wouldn’t forget her.

When I first started writing this blog the birds were indeed circling. They still circle but their wings are not so loud, they make me less dizzy, they no longer drop little sticks and feathers on to my hair. They try of course, especially when I am tired, and then I remind myself of how much I love my husband and children and how I would be stealing their wife and mother away earlier than necessary just to become a nest for squawking birds.

These birds who try to nest represent more than one thing to me. One bird represents my grief at not being able to retire with my dear husband, not being able to grow old together, and more than anything; not being able to share our grandchildren with each other; talking long into the evening about how happy they made us that day. One bird represents my physical pain and squawks that if I think I have felt pain; well hold on baby because you ain’t seen nothing yet. One bird reminds me of my friends that have left before me and are no longer here, no longer physical, no longer touchable. One bird squawked very loudly for me to look at how beautiful its feathers are and to remind me that I was no longer physically beautiful.

But the King of the Birds of Sorrow is Despair, and him I have to deal with every day. He has the strongest hold on me and is the one that I have the fiercest battles with. And that is because Despair is the bird that wants to nest in my hair and squawk over and over that I will not finish what I set out to do. I will not see all my children married with their children at their knees. That one day I will have to leave them and because of that I will break their hearts.

You see the power of that sneaky fuck. I feel him now along with the rest just at the back corner of my right ear taunting ‘you’re screwed, nobody escapes, it will never be better, yes you are dragging your family down.’

So I go back to my blog and I post and I post and I post. I get feedback from people who I never knew but I know now and I know that they care. I don’t get feedback from others that I know because their feelings have been hurt along the way. Somehow the blog has become about them and not about me; and now I don’t want to hear any longer what they have to say.

But to keep the birds of sorrow at bay I make connections with people. They along with my husband and children remind me that I am not defenseless. By writing I am shooing the birds away. I have reached people who can relate and get it. They know and they can help keep the birds of sorrow out of my hair. These empathetic people have reached through the darkness and they give me messages of hope.

They tell me to take heart. ‘Take heart.’ They remind me of what my dear Jill said when she stated ‘we are still here.’ ‘You are still here.’

So while my blog is a venue to clear the air of the birds of sorrow, it will never take the place of my family who support me each and every day. The people that I love the most in this world telling me ‘take heart; you are still here.’

And so I do. I take heart because I believe that the birds are made of the darkest matter and while they squawk the truth, they only tell half the story.

And so I do. I take heart because I believe that my children are made of the brightest matter and while they whisper words of encouragement and love, they tell the best part of the story.

And so I do. I take heart because I believe that even though my children’s hearts may break, their hearts will also heal, if not for themselves, than at the very least for me and that tells the most hopeful part of the story.

So Dad, now you know. Now you know the story.

Conversations Among The Dying

The saying ‘time heals all wounds’ is not true. My good friend Darlene died one year ago today. You never forget and you never completely heal. Time heals nothing. Time passes and that is it.

With the anniversary of Darlene’s death come the memories of my other dear friends who died: Jill, Helen, and Angie. It isn’t easy to lose people that you grow to love, just as it isn’t easy to know that they died of what you will die of and that in the end it comes very quickly and sometimes without having the loving relationships you would like because egos (either yours or theirs) get in the way.

Darlene’s best friend Sally and I were discussing Darlene and how much we miss her and how much we love Marcie and Travis and how we can’t even describe how sad we are for them. Sally said about cancer and Darlene dying that ‘It is all torture, just different forms of it.’

Today, one year later, I remember opening my Facebook and reading the only message Darlene had ever sent me on Facebook and it was posted on November 2, 2007:

*Hi Renee. I love you and think of you all the time. I’m starting chemo on Monday, Docitaxel and Gymsidabean? They’re giving me Kytril so I guess I’ll be sick, not looking forward to that. Got a PICC line today and they drained my stomach and got 6.6 liters off my stomach. They put a steroid after the drain hoping that will keep it down longer than two days. Sorry I haven’t gotten back to you earlier. Don’t know if I’ll see you Tuesday, hope so. Lots of luv Dar XO

I replied with the following:

*6.6 liters are you kidding me. Oh my God.

*Can I come and see you, just let me know. I can come and spend some of the day. I love you. I just reminded Marcie about our lunch next week. You might be having chemo then though. Darlene, Taxotere really did wonders for me. I want the same for you. Hurry and let this be a terrible memory.

*Sally told me yesterday in group that you fell and are black and blue. Darlene, what next?

The phone rings, it is Irene and she proceeds to tell me that she has bad news ‘Darlene just died.’ I said ‘Darlene who?’ She says ‘well Darlene.’ I say ‘My Darlene?’ She says ‘yes.’

I can’t believe it; I just talked to her yesterday. I believe it, and at the same time, I don’t. I feel like somebody just ripped my heart out of my forehead.

Marcie calls me and tells me her Mom is dead and could I come over. There are no words to say to a daughter who just lost the most important person in her life. I go over and see Marcie and Travis and I have no words.

Today, I think of all the things that Darlene, Jill, Helen, and Angie have done to stay alive so that they could spend more time with their children. I think of all the things that I do and Sally, Donna, Carol, Bernice, etc. do to get another day. And with all of the things that we do and go through there is still no reassurance that we can keep the devil at bay.

It is inevitable for us, for all of us really, that no matter how we plan, dose, medicate, radiate, recuperate, and then get more chemo that we can keep death at bay and our bodies bouncing back.

We have been marked and so sometimes all we can take from a day is the support and love that we give to each other. We of the mark, we who will miss out on our children’s lives before we should have too, we who understand the same language, we who miss the ones who have gone before.

I am going to give you a peek at some of Darlene’s emails to me, just so that you can get an essence of what a wonderful, caring, selfless person she was.

These emails are from February/06 to October/07.

*Just wanted to see how you’re doing and to let you know that I’m thinking about you lots (this was repeated on every email, I am not going to repeat it here). Did you go for the bone scan today, if so hope that all went well.

*I’ve got 4 more days of work practicum and than that’s it, I’m officially done school. I applied for a Clerk Typist II at CancerCare, it is a permanent part time position (she did get the job but was unable to take it as her cancer came back).

*Well time for bed. Renee please know that if there is something I can do or you want to get out for coffee just give me a ring. Write when you feel up to it okay. Take care; you’re always on my mind and in my prayers. Lots of luv Dar.

*I know you’re probably already gone for your treatments but I just wanted to let you know that I’ll be thinking of you my dear friend. Hope that all goes well for you and that you’re not sick after the treatment.

*I wish there was something that I could do for you. I remember I cried in the shower every night when I was first diagnosed. And I think I’m always thinking of the time that will be lost. It’s very hard times that we’re going through.

*Do you think that you’d feel like going out for breakfast sometime on the weekend? If you do I could be ready in an hours’ notice. Call if you feel up to it. Take care Renee and I’ll be thinking of you on Friday as I always do. If you ever need me to take you on a Friday please just call. I’ve got my parking pass so it won’t cost us a dime heehee. Thinking of you always my dear friend.

*I hope that you all had a nice Christmas, you’ve been on my mind lots. Renee, you are not going to believe this, my sweet children bought me a laptop computer for Christmas. I cried and cried. Dave has set it up for me and I love it so now when I’m too sore to sit at the desk I can have it on my lap. I’m going to call you today but if you don’t feel up to talking I totally understand.

*I saw Dr. Daenick yesterday and he is recommending surgery to take out the rib and nerves if they are damaged. He is referring me to Dr. Tan, I am so happy about this even though it means surgery.

*Everyone is excited for you GRANDMA!! Phone if you feel up to it, I’ll be home all day doing laundry.

*Hope that you are doing okay and are keeping warm; it is unreal out there isn’t it.

*I went to the surgeon last week and he told me that they could do the surgery but they couldn’t promise that would end the problem and that I could end up in more pain (it did help, but the pain was still incredible). I was upset with that and felt like I was back at the beginning. They suggest that I get a nerve block first (she did and it didn’t really help). What have you been up to, keeping warm I hope. How is Angelique feeling? Are you going to group on Tuesday, do you want to go with me? Talk soon, always thinking of you Renee.

*I have been thinking of you all week, how did the wedding go? Fantastic I hope. I know Nadalene would have looked beautiful. Can you please send some pictures when you can? I’m so sorry that I didn’t make it but I’m still not getting around too easily. I thought I’d be having cabin fever by now but I don’t really have any desire to go out at all.

*I hope that you had a nice Thanksgiving and are feeling okay. We had our dinner yesterday at Karen’s but my stomach is so big I couldn’t eat as much as I wanted to. Just wanted to let you know that I won’t be going to group tomorrow and Sally isn’t sure if she’s going or not. I went to emergency on Saturday I couldn’t take it anymore. They are supposed to drain my stomach tomorrow if the liver is okay. One of the counts was out on Saturday so they gave me some vitamin K and have stopped my needles to help so I sure hope it does. I think I’ll lose it if they can’t do it. I’ll miss you all tomorrow but I’ll be thinking of you all.

The following last email is from me to Darlene’s message above:

*Poor poor you. And I am complaining. I’m so sorry Darlene. I know my stomach hurts and is uncomfortable, but I know it isn’t like yours. I love you and am so sorry that you are going through this.

Who Darlene cared about more than anyone in this world were Marcie and Travis. All she wanted was for them to have people to support them and love them just as if she was here to do it herself. Unfortunately no one can love our children like their mothers do. We can all try but it isn’t good enough. Darlene had a quiet manner and was one of the bravest and selfless people I know. This quote describes Darlene to me at so many levels.

~~ The only courage that matters is the kind that gets you from one moment to the next. Mignon McLaughlin ~~

When I get discouraged I go on mostly for my children, but sometimes because of friends like Darlene, Jill, Helen, and Angie. I go on because they would have given anything to be able to do so and that choice was taken from them. I choose to go on and honour them by living and loving, and at my best times being joyful and appreciating every single second that I have on this planet, because Darlene, Jill, Helen and Angie no longer can.

I am one of the marked, the unlucky, the one who has lost a very dear friend. And even that wouldn’t be so bad if Marcie and Travis did not have to lose a very dear mother. Darlene not being here is a big deal and it should be a big deal. Love and cherish the people in your life today because they may not be here tomorrow.

From The Trenches

I’d give my right arm to be worrying about a common cold, the weather, or what time Winner’s closes. That’s what normal people do, and boy oh boy, I want to be normal so bad. I wonder if I focus on those types of things that it may be a way for me to pretend that life is normal. And then maybe I could kid myself into believing that I am not ill and never will be because I am one of the lucky, the fit, the chosen. I would belong to a group of people with a vocabulary for what we are.

Having Stage 4 inflammatory breast cancer (IBC), and really I’m sure, any terminal illness is like watching a turtle head for the beach. It is slow and it is inevitable.

For those who don’t know me well, I am a voracious reader. Words have helped me through this illness almost more than people. I have discovered though that along with death being taboo, so is serious illness. You would think that there would be a lot of literature written about illness, and you would be wrong.

Virginia Woolf wrote an essay On Being Ill where she wonders why illness has been denied a place alongside ‘love and battle and jealousy’ as one of the themes of literature. Woolf declares that as a consequence of this denial, illness has never been given its own vocabulary, leaving people who are ill without a language to express our experiences.

In a quote from that essay ‘let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.’

Woolf states that for the sick to be able to communicate their experiences they ‘would need the courage of a lion tamer,’ since finding words to describe what is going on in our bodies is a daunting task.

I have come to know many people who are terminally ill and it is with heartbreak that I listen to their stories of having to be without receptive and sympathetic friends or family or even the words to explain their dilemmas. How many times have I heard the statement ‘they don’t get it, we don’t speak the same language, I may as well be speaking Greek.’

It can be near impossible for the ill to engage society with our stories of suffering. Where we could find solace, there is none to be had. I am thankful and bow to the generosity of my family for letting me talk things through that are important to me.

In our society, illness is something that happens far away and to other people. It certainly shouldn’t happen in our own living rooms. But it does, every day. Maybe because it is an uncomfortable truth and an uncomfortable reality, we don’t want to talk about it. More importantly, maybe we don’t know how to talk about it.

If we don’t put words out there, we think we can make it all disappear. And better yet, we can make sure it doesn’t ever become our experience because we don’t have the words and we don’t have the language.

I agree with Stephen Jenkinson when he states that North Americans live in a grief illiterate society.

The ill know they are muffled. I also have seen the muzzle that some people try to make sure I wear. I think it is a real misfortune that while we are in the trenches, no one wants to hear about it. They only want to know if we have won the war. If the battle is faltering they quickly want to change the topic to Deal or No Deal.

There are no paths for those of us who are ill. There are no words to tell us what to do; there are few words to inspire us. There are few words for us to hear and there are few words for you to speak. Machado states that ‘Paths are made by walking.’ So walk we do.

But I have the heart of the lion tamer and I am going to speak. I am going to speak old words and new words and crazy words and loving words. I am going to create my own language of the ill.

Scanxiety

Blood tests, tumor markers, CT scans and bone scans are just not a few of my favourite things. I had them all last week and usually when I am having them I am a nervous wreck. My dear friend Sally calls it scanxiety (scan/anxiety). Can you believe it though, not this time?

I can place my lack of fear right at Nadalene’s door. When I was driving myself crazy last time and making myself physically ill, Nadalene told me that the tests weren’t going to make a difference. That whether the cancer had spread or remained stable, or that whatever I had, and wherever I had it, the tests themselves wouldn’t give it to me. The tests would just report on what was already there and would be a guide for my doctor.

This may all sound very rational to you, but believe me, when you are on the receiving end of these tests it is easier said than done. However I have been able to talk myself into staying calm all this week with the exception of the Monday after my CT scan because I saw a message on my phone that said unknown and so I assumed it was the doctor calling to tell me I was a dead duck. (Rational Renee forgot that I have at least three unknown calls on my phone every single day.)

Seeing your doctor after a scan is brutal. I always knew that. What I didn’t know though was that it gets worse and worse and worse and worse each time. I think this may be because at first you are given a death sentence and so you expect nothing but doom and gloom. After awhile and if you’re lucky and the cancer stops progressing and stays stable you become hopeful again. Hoping that you can hold this cancer off for some time and that you will have more time with the people you love.

The day you meet the doctor to hear the results can be best described in what Angelique calls having the gun put up to your face leaving you hoping that even if it is aimed right at your face, you can dodge the bullets. It feels as though you have pulled out the revolver, put some bullets in some of the chambers, and passed it to your doctor so she can take aim at you. The game of Russian roulette is not a game for the weak at heart. It is not a game for me. Will she say ‘everything is stable and we will proceed with what we are currently doing’. Or will she say ‘it is not working anymore and we have to do x, y, or z’. Or even worse, will this be the time that there is nothing more that can be done.

August 6th will be 2 ½ years since I was diagnosed with Stage 4 Inflammatory Breast Cancer. I went through almost two years of chemotherapy (33 treatments), and have since been on an estrogen inhibitor. At my last scans in March they showed no progression. I am so praying that this is the case from my scans last week.

I am a good cancer patient…..really; I am a great cancer patient. I am tough; I don’t curl up in a ball and hide. I faced what I had to face and I sucked it up; I got through it (more or less). I know I can do it again. But my God, I don’t want to have to. Again, I just want the tests to show stable.

I know some of you may think, and you would be right, that I am whiney and self-pitying. I try not to be. Just sometimes I can’t help it. I can’t help that I feel sorry for my family and myself sometimes.

My sister Mickey has been trying to have me and my family go on a vacation which she will cover the flight. She also has a timeshare that she wants us to use. The hold-up is me though. Actually maybe the hold-up isn’t me, maybe it is my cancer.

I can’t make plans anymore like normal people. I have to get tests. I have to wait for results. I have to know whether the doctor will tell me good news or bad. I need to know if I will have a reprieve. I also know that now it is too late again, as Angelique and Nathan will both be in school soon so it will be too late to organize anything. I won’t see the doctor until the middle of August and if she gives me bad news than I will have to start another form of treatment.

Do you understand my dilemma?

I realize that I am not the only person who has to deal with this shit. I have my wonderful family and caring friends that have been here for me. The same wonderful family and friends that have to deal not only with this shit, but with my shit too. How do I repay them you ask, well, I continually drag them down this road with me.

And this has been going on for months, actually for years, 2 ½ to be exact.

“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 bitter-sweetness.” ~~ Roger Housden ~~

I know I am putting the cart before the horse here. Believe me when I say I don’t want too. It just is so hard for me to have to hear the results, to have to hear if my life as I know it now will have to change again.

It just occurred to me that throughout this post I have been playing the ‘what-if’ game that my Dad warned me about. I know very well what he told me to do when it came knocking. So I’m going to do it “Fuck-off what-if.”

I feel better.

My nervous wallowing will be held back. I am going to remember to live in the now. Right now today, nothing has changed. My cancer is stable today until I hear otherwise.

Jacquie on the day I have to meet with Dr. Grenier I will probably come to you beforehand on all fours, with my tail between my legs and as you know I will be barking. The woof woof will mean that I want you to pass me a dozen of your nerve pills. So just toss them to me no questions asked and say ‘good boy.’

Wish me luck.

Pain Relief

It is a well established fact that you cannot be human and escape tragedy. I know that. We all know that. I don’t know if it is an established fact though that many people who live in pain from cancer would prefer to die just to get relief from their pain. I certainly am not at this point, but I know that Andrea is.

I am sitting here spiritually crushed because Andrea is in so much pain right now that she wants to die. In her own words “ASAP.”

I usually do not look deep into things. I take them as I see them. But, I am so heartbroken for Andrea and her family that I wonder if I am also not crying for myself.

This morning I have been so sore and have taken all my pills and then some. Have a neck roll around my neck to help push my shoulders down and hold my head up. Feeling nauseated because of too many pills. Crying because I feel sorry for my body and the pain I am in. It is mostly my shoulders and upper arms, but then again it is also my back, my neck, my feet, my fingers.

This brings me back to Andrea, and her pain. I know that compares to her my pain is nothing at this point. I would be lying, however, if I didn’t say that the level of her pain scares me. It scares me for what my future will look like. I know the power of now and I know I need to be here, but right now I am anticipating the future.

Andrea wants to go now and states that she wants God to forgive her for anything she has done. I on the other hand think she needs to forgive God for what she is being put through.

I always want what my friend wants. I know that she wants to die now, so that is what I want too, but I just can’t help wishing she could live a little longer pain free and be with her children.

I have always been a sucker for fairytales. Just now am I discovering that they are rarely true.

Die Suddenly Or By Inches

On Facebook I asked the question “Do you think it is better to die suddenly or by inches over a period of time?” At the time I was very ill from my treatments. At the time I believed wholeheartedly that it was better to die suddenly.

I think it was during this time that I fantasized that someone would come in the house, creep up the stairs to my room, slowly turn the door handle, check to make sure I was still sleeping, warm the barrel of the gun to make sure it was the temperature of my head, and ever so quietly step to my side of the bed and stick the gun to my temple and blow my brains out. All nice and tidy, lickety split, over and done with (of course except for the cleanup and the pain my family would suffer).

Some of the answers I received:

If you are suffering and you just can’t go on another minute then I would want to die immediately but if you can live another day I would take each day that I could on, with the hope that things can get better.

Suddenly, it’s done and over with and nobody has to suffer.

Oh, that is a hard one! If you die suddenly, you don’t suffer through too much pain, it is over with before you realize, but, if you know you are going to die, I would think one would appreciate each living day more and more and make the most of it.

Well no idea, but I want to die from old age.

If you know that you have a time line and can live somewhat comfortably, I would rather take all that I could get. Even that can be hard on a family when you know what the outcome is going to be. For myself, I think that I would rather go suddenly.

Life is precious, over time or suddenly, in the end it is always too sudden. I would want the fight to be fought until you can’t fight any longer. I believe in the life after, see you in the days beyond the days….so out of our control.

This is a tough one to answer. If I could handle the pain then I would want to die slowly, that way I could spend time with my friends and family, and all the people I love most. It would make the pain worth it.

Suddenly, I was with my Dad as he died by inches.

I would want to go suddenly. No pain and right after I borrowed a couple of thousand from Renee.

Myself I would like to die in my sleep so I guess I would rather go right away….but I’m not going until the good lord calls me.

Life is a precious gift and you only get to do it once. I would take all the inches I could get.

Inches over a period of time. Don’t the majority of us get that chance? I mean, unless there is a sudden death, we are all dying inches over a period of time from when we are born.

The answer that gives me pause and makes me think is the one from Angelique “Inches over a period of time. Don’t the majority of us get that chance? I mean, unless there is a sudden death, we are all dying inches over a period of time from when we are born.”

There is just no good answer to this question, because death is so final and so painful for the people left behind. Whether we die slowly and drag them with us or we die suddenly and leave them behind.

I absolutely get that people would want the time to get their house in order and to make peace with their God. I more than understand how important it would be for your loved ones and for yourself to be at peace with each other. But of course not having been there or experienced that but knowing that I am going to die sooner than later I want my family to know that even if I fought with you two minutes before I died, I absolutely love you and the bad feelings that went before would be wiped away.

I begin to suspect as I am writing this that I asked the wrong question. What I really meant was “Do you think it is better to die suddenly or in physical distress (nausea, not being able to go to the bathroom, having your family take care of you like an infant) and in excruciating pain by inches over a period of time?”

I feel that most people would agree that sudden death is far more welcome than a slow, incapacitating and painful death. I guess that is a no-brainer. I know that I don’t want my family and especially my husband and children to have to watch me linger near death in intractable pain. I would not wish that on anyone. Wondering everyday “Is she dead yet?” Feeling guilty for such a thought.

I can tell you that seeing someone you care about wasting away in pain and anguish, with nothing you can do about it, is heart wrenchingly awful. It is awful for the care giver and doubtless ten times worse for the sufferer. With cancer it is not just at the end that you suffer like this either, but it is all the way through. I am not even touching on the emotional suffering in this blog. That is another situation entirely.

The thing with cancer is the agony it forces the family to endure. It changes them forever. They are not the people they were before. Sudden death may be a selfish wish but the alternative is unthinkable.

Jacquie answered that “If you are suffering and you just can’t go on another minute then I would want to die immediately but if you can live another day I would take each day that I could on, with the hope that things can get better.” At the moment this is what applies to me the best.

If my fantasy about being shot which I had desired so intensely at times in the past had come true I would never have known the happiness of seeing Nathan graduate, Nadalene get married, and Angelique become a Mom to my sweet girl Josephine.

So although I believe that there are much better things about dying suddenly to lingering in agonizing pain I also realize that there are negatives to this way of dying too.

Either way the loss is the same to both families. The one they love is no longer there. The heartbreak they feel will never go away. The hole in their heart will never be filled.

Because I will most likely die of cancer, it is not an irrational assumption that when I die I will be escorted on both sides of the veil between Heaven and Earth by the people I love the most in this world.

In the end, however, when I die whether suddenly or in prolonged death, it will be me and me alone that will be making that step across the veil from life to death. And me and me alone that will be making that step across the veil from death to life.

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

Three's Company Four's A Crowd

Last week in group, we rehashed what I had said about giving my cancer to a sibling if I could take it away from myself.  It seems that this is a hard concept for these ladies to understand.  (And of course, I find that hard to understand.)

Irregardless, I respect it.  I do not have to understand their truth; I just need to accept it as their truth.

I said I would even give it to my husband rather than have it.  I think Bernice thought that maybe I wasn’t crazy about my husband because she asked me what he was like.

I felt tears rise in my eyes and my heart beat a little faster.  Amazing, I said.  He is amazing.  Very kind.  A really good person.

He is a handsome man, one I adore and take for granted every day.  As if there will always be another day, every day.

I know I am a person of many peculiar thoughts.  One thought I have is that my marriage consists of three entities.  Wahid, me, and the marriage.  Our three was very good company indeed.  Now, however, we have a fourth who has joined our merry little group.  That entity is cancer and it can make us (me in particular) feel very crowded.

The fourth steals from us, it sneaks up on us at any time of the day or night.  Boo it screams.  It calls us dreamers.  It adds nothing to the company.  Cancer is always contrary, when we are happy it wants to make us miserable.  It rarely showers.  It is stinky and full of ka ka.

I don’t consider myself or Wahid to be rude people but we do snub the fourth.  We are as happy as we can be at any given time, until we are not.

This is a conversation between Wahid and I that has occurred many times.  You will see how the fourth always tries to win and how the third does not allow it too.

“I fucking hate this cancer.”

‘Well dearest.’

“I don’t want to have this cancer.  I am going to die anyway, why the hell am I putting myself through this shit.”

‘Well dearest, we have to go through the process.’  (Jill in the group pointed out how relevant it is that my husband uses the term WE.)

As simple as this conversation is, it is the conversation we have.  Wahid knows me to a tee.  He knows I don’t want to hear crap.  He knows I just want him to be with me.  He knows that I know and that the third knows that he can’t fix it; he can only be there for me.  Being there for me is where the third has its greatest power.

Wahid is very wise.  He is probably the most modest man you would ever meet.  One of the things that is very different (we have many differences) about us is that he is not arrogant and does not believe that he has the answers to my problems.  He does not take on the fixer role.  He knows better.

I can count on Wahid and he can count on me.  I know that he will stand in the centre of the fire with me and I know that he will not shrink back.  While the fourth tries to destroy us, he and the third will hold me up.

So as you can see it is not that I don’t love my husband (or my siblings) it is that I love me.  I love them and I love me.  I would never want them to have cancer along with me;
after all two wrongs would not make it right.

Dearest Wahid:

You, me.
Then, now.
Us, always.

Love Renee