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.

Dude

Dude

I asked for one fucking thing, but you couldn’t deliver.

No breaks.

Results from gastroscopy shows suspicion of cancer in stomach and pressing on esophagus.

Oh yeah…….

Amen.

Welcome Home

Darling Catherine you said in group a few weeks ago that if you only had five weeks left it would not be enough time but that you could live with the idea of maybe five months.

It wasn’t to be and I am sorry. Sorry for your small son and husband and sorry for you.

Welcome Home

One of my dear friends Sandy died.

It always seems so strange that you can sit on a chair beside someone and within a week they are dead.

Sandy is from my support group. Last Tuesday when I went to talk to Jacquie’s pharmacist I saw Sandy and went to go sit with her ‘Oh Hello’ she sang to me. We sat outside in the lounge for about ten minutes and her Mom and I and Sandy talked. She told me she was going to see the doctor about radiation.

Sandy told me that she was feeling alright, but that the skin would not heal and that she now had holes over her chest. Holes where the cancer had eaten through the skin. Then she went on to say ‘Enough about me how is Jacquie?’

Sandy had a passion for cats. Sandy took the feral cats from a field by her home and raised them up and got them proper homes. For Sandy, heaven won’t be heaven without some cats.

My dear Donna emailed me the following about Sandy and I want you to hear it too, just so you get a wee picture of a very wee lady with a tiny bun on her head, a wee lady with the biggest heart and the singiest ‘Oh Hello’ you could ever hear.

“I read the email about Sandy, beautiful lady. I saw her last Tuesday sitting in the lobby at Cancer Care waiting to go to radiation for the open sores on her chest. I noticed her right away and knew she was really ill. Her skin was gray and her breathing laboured. First thing I did was give her a kiss on her forehead as I had come up behind her. She looked up a little startled but her eyes lit up when she recognized who kissed her. ‘Oh Hello’ she said. We chatted for a bit. She decided she was going to head for radiation so I went to group. My memory of her will always include her voice. Oh Hello. Just because she sings it when she was happy.”

Goodnight dear friend.

Times Three No. 13

Every day has been a struggle for dear Jacquie. But she is braver than the bravest and will not fail.

Every day has been a fight to trust that we can get through this. To trust that our love for our families and each other is more important and has more of a call on our hearts than anything else that can try to take us down. Every day I lose that trust many times over.

I made plans and said God willing. Jacquie made plans and said God willing. And then he willed otherwise.

Sheldon got sick and died and we were all affected. We cannot allow ourselves to be dispassionate about each other’s lives. We are all in this together.

When I was first diagnosed with Inflammatory Breast Cancer I would sit on my couch (I called it my coffin) and cry. All I could think of was what a loser I was. I lost and everyone else won. My children lost and their children won. I felt less than. I was a diminished person.

Jacquie and I talk about this many times, because now Jacquie feels that she is the loser and it is my turn (just like she did for me) to tell her that she isn’t. “Did you think I was a loser when I was diagnosed?” ‘No.’ “Well, either are you. We’re not losers, we’re just sick.”

And now I understand, but sometimes it is hard to let those thoughts go.

It is a really long road. Once you step on the road marked ‘Cancer’ it is near impossible to get off of it. And if you are like Jacquie, Flo, Sally, Noreen, Daria and I and many others, well then you just don’t get off that road; period.

Jacquie is not well. These past few months have not been easy. The typical textbook of cancer attacks on both your mental and physical health: pain, sickness, loss of appetite, loss of weight, sadness, loss of energy, and mostly loss of hope are all pounding at her daily.

I know that if Jacquie is given enough time that she too will come out the other end. Wondering what hit her, but able to know that she can go on. I have only seen one other person as brave as Jacquie and that was her son Sheldon.

Almost four years is a long time to be sick. A long time to be told that you will be dead in six months and then when you are able to live past those six months, know that you are on borrowed time and the bomb WILL drop and when it does you better be ready.

Jacquie has been sick for almost four months but with her not being able to move you may as well times each of those months by twelve. It is a long time to be sick. Never mind the loss of her dear boy Sheldon.

It is a really long road, it just is. And I know I really know that it gets old for people. Unfortunately for some of us we don’t have the luxury to step off the road or to take that well-needed break. Trudge on, trudge on, and do not give up.

Jacquie and I are different in many respects to our cancer and what we want from people. I never wanted anyone (because I had my family and Jacquie) and Jacquie (always being the nicer sister) wants people. Not only does she want them, she needs them.

Meeting with Jacquie’s oncologist we heard very good news. That the tumor had shrunk remarkably. It is a victory. I am over the moon. Jacquie, Ben, Gil and I are all there, and what Jacquie really wants to know is if she will regain some motion. The doctor feels she will. Another victory, one that makes Jacquie at least feel ‘Well maybe?’

Jacquie started chemo again last Wednesday and is dependent on people (which she never has been in her life). It is a really long road. It just is, and it is very hard to make people appear out of thin air.

In the beginning everyone calls all the time, they have all kinds of offers, they remind you to ‘just give me a call if you need anything.’ They will come over to visit all the time……but after the weeks drag on (after all, all the time is a very long time) its like people get sick of you being sick.

They see your phone number come up and they are just too tired to answer because they know you may actually ‘need anything.’ So what happens is your phone number never comes up because you just know not to call. They are relieved and now can pretend you are getting everything done (the top hat and the rabbit must be in the house), as you are not calling them. After all, they did offer.

Last week I was so tired and coughing my guts up at Jacquie’s and she called me from the bedroom because she needed something, I was like ‘Oh God, I’m so tired; I just want to go home.’ But then I knew that it isn’t Jacquie’s fault and I knew that I would have to get my shit together and go and help her. Jacquie did everything and anything for me. For shit sake she gave me enemas. I tell her and through our tears we laugh our heads off.

It is a really long road, it just is. It is not a road for the faint of heart.

I get sick of not doing anything fun, not seeing anyone, sick of even answering the question ‘How are you feeling?’ Because the truth is no one wants to really know. When you find that person who really does want to know (few and far between); the funny thing is you don’t feel sick of answering the question.

To the many other people who ask the question the usual response is ‘fine’ because to be honest it is easier. You may as well let them off the hook in the first few minutes. Many people don’t know how to react or don’t want to hear it.

I see that Jacquie has learnt this already. I see her get the phone and say ‘good, fine, alright’ even though she is feeling far from all of those things. On the other hand what do you say ("I mean I’m not dead, so I guess I’m fine").

I know that we are all entrenched in our own personalities and lives and loves and tendencies. I know that we sell and buy our own excuses. I know that none of us like change and we all like our comfortable life if we are fortunate enough to have one.

I am thankful that I had Jacquie and my family who took exceptional care of me even when they needed a break, even when it got old, even when they got sick of hearing me say “I feel like shit.”

Jacquie and my family did that for me because they knew I needed them. I needed other people too….

Jacquie was throwing-up and having to go to the bathroom, poor girl. I was helping her and then went home. I too was throwing-up and Nathan called and said ‘Auntie Jacquie needs you, can you go back?’ I was just about to and phoned Gil and all I can say is thank God homecare came, because I was sick and Jacquie was sick and the last thing I wanted to do was go anywhere.

Jacquie just like you did for me, whatever it takes, for as long as it takes, you won’t have to ask me and you won’t have to thank me. And I will always be sick of being sick, but never ever will I be sick of being there for you.

The light shined bright the other night though. There was a Beast, Belle (dressed as Cinderella), a Witch and her Mama, and a Grandma/A.J. all on a crisp Halloween evening laughing and going door to door. I drove up and lunged towards them like Quasimodo because I can barely move my leg and pounced on Grandma/A.J. in the wheelchair and asked if she had fun and she did. I could see it.

Beast (Ben) pushed Grandma/A.J. (Jacquie) while Mama (Angelique) went up to the houses with Belle (Kayla) and a Witch (Josephine). Amongst all of this magic there were many creatures running from door to door, there were even boxes walking around.

But best of all it was a good night where a mother and her other brave son were able to go for a lovely evening stroll.

*artwork by Kelly Vivanco

A Lump Is Not Necessary To Have Breast Cancer No.2

Since October is Breast Cancer month, and I unfortunately know that bitch too well, I would like you to read a post I did on Inflammatory Breast Cancer in February, 2008.

http://circlingmyhead.blogspot.com/2008/02/lump-is-not-necessary-to-have-breast.html

Know what you know and know what you need to know. Had I only seen this I would have known what I already knew.

Times Three No. 12

Jacquie sometimes wishes she was dead. Really why wouldn’t she?

Jacquie came home the Wednesday after Sheldon died, two days before his funeral. She needed to grieve with her family and not in a hospital setting.

Camille has moved in with Jacquie to walk through the fire on a full-time basis with her. Camille has severe arthritis and will have to go back to her own home in the country in a short while.

Just about three weeks after being home, homecare is finally being set up.

Jacquie has lost her range of motion on the left side of her body and though she has regained some movement of her hand and can move the bottom of her leg, she is unable to stand are do the things that we all take for granted.

Angelique and Nadalene make dinners for them on Tuesdays and Thursdays. I made dinner the other day and was going to bring it over; we had a good laugh because everyone knows I cannot cook, so Jacquie told me it was alright, they didn’t plan on having dinner that particular night (Gilbert had already cooked). Jacquie told me she was nauseated enough as is.

They have knocked out walls, doors, and put tracking on the ceiling. The tracking is where the hoist is attached to move Jacquie from her bed to the wheelchair.

Mickey decorated Jacquie’s bedroom beautifully and it looks like a wonderful lounge area.

The night before Nathan taught his first class he gathered up a bunch of papers and on the very top of the pile was a graduation card. He opened it up ‘Congrats Nate!! All that time & work definitely paid off! Good luck molding all those punk kid’s minds! Proud of you cuz! Sheldon’ The name of the first student on his roster had the same last name as Sheldon. The first letter of that child’s name was S. So the initials were exactly like Sheldon’s; S.B. The card was written on May 27, 2009 and it was the only graduation card in the pile.

You are here Sheldon; we all know it and love to be reminded.

I tell Jacquie that there were many times I wished I was dead too, but I am glad now that I am not. I know what she is saying though and how her situation is way worse. She also knows what I am saying.

Jacquie knows that during the two years I was getting chemo on a weekly basis that everyday I would fantasize that a person would come into my house when I was having a nap and blow my brains out. I didn’t want to see the person because I didn’t want to be frightened, I just wanted them to come in the house, float up the stairs, and when I had my face turned to the wall pull the trigger. It was extremely important that they didn’t scare me.

Jacquie, Camille and I talk about these strong feelings and Jacquie said I was just thinking how Sheldon would say to me right now “Mom you can’t be like this, you have to live you life.” We talk about acceptance and how amazing Sheldon was and how he knew that he had to accept his fate or the time he had left would be a living hell.

Nathan goes to sit by Sheldon’s gravesite and it makes me think of a quote I had read long ago. “They’ll come back to sit when they’re suffering.” Most of us know these places along the path where pain and suffering reside, where the heart aches beyond measure. These places where we need to sit because we are bowed by grief.

Jacquie is looking through a different lens now. Not only does she have to face the loss of her beloved son Sheldon on a daily basis but she also has to face everyday her illness, weakness, and loss of independence. These concerns do not let us see any of the good that is in front of us at this very moment. When they say to live in the now, it is hard when the now is very difficult.

Ups and downs are hard enough to handle at the best of times, never mind when the downs outnumber the ups ten to one.

Life is desperately fragile. Jacquie and I have lived and loved and grown attached to each other for over 53 years. We are such an intimate part of each others lives that having learned how to love each other we do not know what to do without each other. I love Jacquie desperately now and I know that is not how people are meant to love; desperately.

We get Jacquie home, but we can’t get her well. Life is left to be lived and Jacquie will live it as well as she is able because that is Jacquie’s way. Yes she wishes she was dead sometimes, but that is not all the time.

Cancer and what it does to you takes some getting use to.

Together strong.

*artwork by Kelly Vivanco

Taking Care Of Business No. 2

Nathan is watching me climb out of a town car limousine at 1:00 on a Friday afternoon. He says ‘Who the heck dropped you off Mom?’ I tell him Lynette from Desjardins (the funeral home). He laughs and says ‘Oh God.’

Anyway, Friday afternoon I spent at Desjardins Funeral Home. I am always fine-tuning my funeral arrangements so that it will be less work for my family when the time comes.

This is my third time going as I went in May last year. I plan on making this an annual event just to fine-tune and also to get use to the place. The first year I went I felt choked, the second year it felt more like business and this year it felt like I was just renegotiating what I want in my living room with an interior decorator.

Although it is Nadalene who originally wanted me to set up my funeral, I really feel now that everyone should do it and honestly it is just something that needs to be done.

The funny thing is that the more I go and the more I know, the more I realize I can more or less do what I want. I also feel that at the time of my death Lynette will see me as a person not just a body.

I will share with you what went down this year.

Lynette and I go over all the details of what I want and switch up a few little things here and there. I tell her that I have bought a cemetery plot at St. Boniface Catholic Cemetery on Archibald and give her all the details. Tell her that I have also prepaid for the opening and closing of the plot.

We talk a little more about the urns and I tell her I want to check out the new ones they have this year as I am looking more for a box type.

We go down to the casket room again and I honestly don’t know why they have the caskets so crowded in that room. They are jam-packed with their quilted lining that gives me the creeps. I ask her if they have samples of the cardboard box that I want for cremation and she says no, just the wooden one for $740. The one I want is $15 and she tells me that it just is really a long cardboard box that looks similar to what a fridge would come in. I ask her if it has Kenmore stamped on the side and we both laugh.

The first year I thought I would want a niche in the wall and was told I couldn’t have a wooden urn because they dissolve and the cemetery doesn’t allow that. Last year I thought I would want a bio-degradable urn, but this year I decided against the bio-degradable as it looks like a white cotton cardboard box that you would take leftovers in from a restaurant and I don’t want that sitting in the church. It looks cheap when really it is more expensive than the wooden urns. I did like one wooden urn but am thinking I want to talk to the cemetery place and see if I just can’t have a nice wooden box that isn’t $500. I prefer what Karin made for her companion Zach.

I really like the idea of dust to dust; ashes to ashes.

I am only there for about an hour.

Costs of a funeral:

Arrangements: $840 (2007); $940 (2008 and 2009)

Transfer of body from hospital: $215 (2007); $265 (2008 and 2009)

Staff (four people): $495 (2007, 2008, and 2009)

Preparation for identification: $220 (2007 and 2008); $395 (2009). I ask why such a big hike and the answer was so lame that I don’t even remember it.

Basic facility: $295 (2007); $195 (2008 and 2009)

Cremation fee: $460 (2007); $485 (2008); $495 (2009)

Lead car (for priest, flowers, urn, etc): $125 (2007, 2008, 2009)

Limousine for family: $225 (2007, 2008, 2009)

Casket for cremation: $760 pressed board (2007); $15 for cardboard (2008 and 2009)

Urn: $760 for pewter (2007); $435 for bio-degradable (2008); $415 for wooden urn (2009)

*Memorial cards: $1.75 per card (2007 and 2008); $2.00 per card (2009) $600

Guest book, 50 thank you cards, and crucifix: $195 now no longer want from Desjardins and will buy on our own.

Luncheon sandwiches: $10 per person ($3,000) now no longer want from Desjardins, Mickey will get from that place in Steinbach.

Luncheon tea and coffee: $1.50 per person then $1.75 per person ($425) now no longer want from Desjardins, Mickey will get from that place in Steinbach.

Two hostesses: $250 now no longer want from Desjardins, Mickey will get from that place in Steinbach.

*Based on 300 people.

The funeral based on around 300 people attending would be about $4,165. Not including taxes, church costs, priest, death certificates, food and catering, other papers needed or cemetery costs.

After the meeting I ask Lynette to use the phone and she asks me if I am phoning to be picked up. When I tell her yes, she tells me she is going right by my place and can drop me off.

Just before exiting she tells me how great it is to see me again and how she is happy when she sees me. I tell her that I like to see her too, but hopefully if I see her before next year it will be socially and not business.

Some things I still know for sure:

Do not want to die at home.
Cremation cardboard box of $15 (do not upgrade this).
No public viewing.
Full Catholic Mass at Holy Family Church (incense and holy water).

I wrote this a week before Sheldon died; little did I know that I would be seeing Lynette again nine days later with Ben and Jennifer.

One Year Ago

My Dad died one year ago today. My nephew died 12 days ago today.

It’s funny that I have missed Sheldon more in the last 12 days then I have missed my Dad in the last 365.

And now I look at your picture Dad and the 365 days come crashing in.

Dad thank you for crossing over time and space to let Sheldon know that he would be with you and that he would not be alone. You always liked to do things in a big way.

I love you Dad and I especially miss you today.

Prayers for the dead are on the same footing as gifts for the living. The angel goes in to the dead with a tray of light, bearing a cloth of light, and says ‘This is a gift for your from your brother so-and-so, from your relative so-and-so.’ And he delights in it just as a living man rejoices in a gift.

~~ written by al-Ghazali ~~

Times Three No. 11

Sheldon took his oxygen off; put his hand above his head and fell asleep at 4:30 a.m. on Friday, September 18, 2009. Uncle Joey was sound asleep beside him and the nurse woke Joey up to let him know that Sheldon had gone.

Birds kept flying in circles at the window. They wouldn’t leave; just fly up to the window and hover. When Nadalene and I left she pointed and said ‘Mom, look at the birds they are still there, they just keep circling outside Sheldon’s window.’

Josephine said ‘Sheldon, Mama, Sheldon?’ Angelique turned her head in the kitchen but no one else was there. Angelique said “Uncle Sheldon.” Angelique asked Don, did you tell Josephine I had gone to the hospital earlier to see Sheldon and Don said no. Later when Don and Josephine were sitting in her castle Angelique heard the following conversation between them. ‘Did you see Uncle Sheldon today?’ “Oui.” ‘Where did you see Uncle Sheldon?’ “In the kitchen Daddy.”

Jacquie, Nadalene and I are sitting in Jacquie’s hospital room and on the shelf are a rubber wheelchair pad and on top of that a neck pillow. We are talking and Jacquie starts crying. The pad and the pillow fly off the shelf and land in the middle of the floor. So where there were three, there must have been four.

Mom is saying her rosary and catches a reflection. She looks again and realizes it is not a reflection but a park bench with my father and Sheldon sitting on it. My mother has always seen shadow people, but they weren’t shadow people.

Times Three No. 10

Our dear Sheldon needs your love and prayers.

Yesterday morning Sheldon’s breathing was getting labored.

In the afternoon a palliative doctor came and talked to Sheldon and told him they would be moving him to the palliative ward. Sheldon said “Oh, death row.” She said ‘No Sheldon, just that they will be able to respond to your needs faster and you will be more comfortable.’

She asked Sheldon how he felt about dying and he said that he was okay with it. He said “I am fine with it, but my family isn’t.”

There are things that we don’t want to happen but have to accept, things we don’t want to know but have to learn, and people we can’t live without but have to let go.

~~ Author Unknown ~~

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.

Times Three No. 9

Sheldon, Gilbert and I were talking about how Jacquie’s hair was starting to fall out in clumps and how it needed to be shaved.

Phone rings and I answer “Hi. Speak of the devil. Sheldon it is the devil on the phone.” ‘Mom you should shave your head. Auntie Renee is coming down with the shaver now.’

I walk in Jacquie’s room with the shaver in hand and ask if she is ready. I go ask the aide to get me scissors and I start chopping away. Jacquie keeps screaming for me to not go near her stitches. I tell her they are long fallen out and she is in good hands.

Gilbert comes down because Sheldon has gone for radiation and Gilbert takes the shaver and he starts shaving. Gil and I take turns and in the end; Jacquie looks beautiful. She is happy to have gotten rid of it.

Jacquie is moved to a new floor and has a run-in with an aide. I tell the aide “That she needs patience as Jacquie is going through a lot.” She tells me ‘She knows.’ I say “You know about her son?” She says ‘Yes, but that is not my fault.’ I say “Pardon me.” She says ‘I’m sorry to hear it but she doesn’t need to be so angry.’ I take a very long look at her and tell her “I have nothing further to say to you, we will be talking to the charge nurse.”

The charge nurse asks Jacquie why she can’t go for radiation alone without an aide since a family member goes with her anyway. Jacquie tells her that none of us can help her as she cannot move on the left side. This goes on for ten minutes. I pipe in “Would you be sending an aide with her if a family member was not going?” She says ‘Yes.’ I tell her “Than for all intents and purposes she is now to consider that Jacquie goes alone and therefore needs an aide.” An aide will be provided. And yes Jacquie of course we will still be going with you.

The aide comes in later and tells Jacquie that she is sorry about the way she acted.

Jacquie and Ben keep sneaking away from the hospital. Ben pushes her in the wheelchair to Angelique’s house where they sit and have tea.

Jacquie tells me that the doctor at the hospital that she has never met before prances in her room and asks if she knows her prognosis. She says no and then he tells her. ‘You have the most serious kind of brain cancer. You have what Ted Kennedy has. You will never get motion back on your left side.’ She tells him that she already has some motion and can move her fingers and is starting to move her foot. He tells her ‘The tumor will grow again and you will lose any motion you have gained. You have one year.’ She is shocked and tells him to leave the room and not to come back.

Things Jacquie and I talk about besides the obvious ‘Sheldon.’ Things I try to remember to say so that I can be here for her in her own fight with cancer like she was there for me. Things that can help us walk through the fire together.

Face the truth head on. Know that you have a life threatening disease so that you can fight it. Don’t deny it; that will only get in your way. Never look back, you need to apply all your energy to getting as well as you can so you can spend more time with Sheldon.

Commit to fighting even though you see no point anymore. If something can help you, than you need to do it. If it is unpleasant but can make you better than again, you need to do it.

This is your life and if you have questions than ask them, you are entitled to answers and if you disagree with those answers or they don’t make sense at the moment you have the right to ask again until you are clear. You are knowledgeable Jacquie and that is your greatest asset.

Like Nadalene always said to me ‘Save your fight for the cancer.’ We need to write down all of your medical support team. Know who they are and ask the questions again.

Believe in your treatment and in yourself. Don’t worry about what that doctor told you. You are unique and no one else is like you. You will live until you die no matter what timeframe that you are given.

Ask for and be willing to accept support that is given to you. This is a time in your life where you can be selfish. Let others who want to help you; help. You have limited life energy and you need it for Sheldon, Jennifer, Ben, and Gil as well as all of your grandchildren.

Everything about cancer is depressing, nothing more so than our dear Sheldon having it. The diagnosis, both yours and Sheldon’s, the treatments, and the disease itself are enough to make a person want to end it. But you are stronger than anyone and definitely stronger than you think.

Jacquie you must not lose your desire to live. Life is beautiful and you have many reasons for living.

Together strong.

Times Three No. 8

We listened as though our lives depended on it. We didn’t swallow in case it made noise.

A warrior and the warrior’s family were told of terrible things that were happening on the battlefield. The warrior did not avert his head nor did his family.

Sheldon had a CT scan on Friday the 21st so that they would have a good picture of what is going on before they start chemotherapy.

August 25th the results are in and we met with Dr. Wong for a family meeting at 4:30.

‘Sheldon, I am sorry.’

‘The tumors that were 2 ½ cm after your surgery have grown to over 12 ½ cm within one month.’

‘We do not believe that the chemo will work and it is no longer an option.’

I jump up to stand behind Jacquie’s wheelchair so that she could touch me and I could touch her. I can’t bear for her to continue hearing this alone, even though Sheldon, Ben, Gilbert, Mickey, Joey and Dr. Wong, as well as three other nurses and another doctor are also in the room.

‘The pain you are in is from the cancer pressing against nerves and the liver. Your blood is already showing signs of problems and your liver enzymes are elevated.’

‘We think that radiation may be the way to go so that it can shrink the tumor and you would be in less pain. Radiation could start tomorrow.’

‘You will be in palliative care.’

“How much time do I have?”

‘Do you really want to know that Sheldon?’

“Yes.”

‘About two months.’

“Okay.”

‘I’m sorry Sheldon.’

“That’s okay, thank you for your help.”

Joey is in the hallway crying. Mickey is in the chair in the hallway crying. Gord is in the chair in shock.

Charlton comes and I have someone to hold on to. I phone and let the family know.

Jacquie comes out and says she wants to go outside. Jacquie tells me that Sheldon wants to see everyone and that Angelique, Nadalene, Nathan and Wahid should come up right away. Gilbert and Mickey take Jacquie outside.

I go in and see Sheldon, I am crying and holding his hand and he tells me that it is okay.

“The dream I had was not a dream Auntie Renee, it was a premonition.”

‘Yes, Sheldon, it was a premonition.’

“It comforts me Auntie Renee.” ‘It comforts me too Sheldon.’

A few months after my father died at the end of September, Sheldon told his Mom of the dream he had and how it scared him so much he woke from his sleep.

Sheldon had a dream that he was sitting with my father on a bench and they were talking. All of a sudden Sheldon remembered that his grandpa was dead and said “Grandpa what are you doing here, you’re dead?” ‘I know I am Sheldon, but you are dead too.’

August 26th Sheldon is saying that he is not afraid to die. That he believes that there is more to this life. Sheldon tells me that he had so much fun last night with Ben, Angelique, Nadalene, Nathan, and Uncle Wahid. He said they laughed a lot at Ben telling stories.

He talked again about his premonition and knows that his grandpa is with him and is his guardian angel and that he will be there to meet him when he dies.

My father is a warrior from way-back and now that old warrior will one day be waiting to greet this young warrior.

I am counting on it.

Pages 48 - 51

‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I finished the book before I started any treatment but it helped make me less afraid of what was going to be coming at me.

Quotes from the book will be in italics.

Discover Your Emotional Style (46):

My dominant style of expressing emotion is suppression. I restrain myself from venting real feelings. Denial is also my style where I push feelings out of my consciousness.

Review, release, and renew.

I choose to be hopeful.

Make Forgiveness A Habit (47):

Forgive and accept.

Nothing from the past is important enough to allow it to pollute our present.

Exude gratitude (48):

I am grateful just for being a part of this huge and wonderful world.

Today I am thankful that Wahid is on holidays and can be home with me. I am thankful for his company.

Practice Unconditional Loving (49):

Loving heals.

You don’t fight fears, you replace it with loving.

*Loving is the first and last word in healing, the great balm that quiets distress, the only real ‘magic bullet’ against cancer, and the strongest vaccine to combat malignancy. Our greatest enemy is not disease but despair. Unconditional loving is the healer.

Share This Hope (50):

Angelique bought me this book and it was/is so helpful.

Survey On Cancer And Recovery (Appendix):

I have Inflammatory Breast Cancer. I was diagnosed on February 8, 2006. It has metastasized in the bone marrow and bones. It is a Stage 4 cancer. My recommended treatment is chemo once a week for three cycles and then one week of rest. Dr. Grenier is a board-certified oncologist. I get Herceptin once a week and Pamidronite once a month.

The most difficult part of the diagnosis was emotional. Thinking and being caught up in fear. All of the ‘what-ifs?’

The cancer diagnosis affected all of my family in more or less the same way. ‘What-if’ fear. My family has all been helpful. Their positive ness and pursuit of knowledge has made me more hopeful. Actually I am very positive. Seeing how my Dad has lived his life with all of his setbacks has been very encouraging.

My faith has only been strengthened by the cancer diagnosis. My faith will help me destroy the cancer in my body.

Besides medical doctors I am in the process of surrounding myself with a team of individuals who practice alternative therapies.

I do use alternative treatments. Any that come my way that sound interesting I will use.

I haven’t yet attended a cancer support group but I have placed my name forward to attend some. I also would like to get a mentor.

I don’t believe that cancer has affected the fundamental values by which I live my life. It has only intensified how precious life is to me. However, it has changed my ideas of nutrition and exercise.

My advice to anyone with a diagnosis of cancer is to look at things realistically and positively and to know that they are an individual and that no test and no person can tell them how long they will live. Look at the fear, than move on to the good because fear and ‘what-ifs’ paralyze you. Be positive. Live a great life. We have here and now. Life is amazing.

This book was incredibly helpful to me.

Pages 42 - 47

‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer in February, 2006. I needed to think I knew how to keep my head on my shoulders during the incoming storm.

Quotes from the book will be in italics.

Live This Moment (38):

*Many people with a diagnosis of cancer needlessly pollute their lives by living in the past or in the future. Instead, I suggest our goal should be to live well with the only time we do have – this very precious moment.

Dad says ‘When what if comes knocking tell it to fuck-off.’

*The answer: present-moment living. All of our regrets about the past, no matter how sincere, won’t change history. All of our worries about the future won’t add even another minute to our lives. On the contrary, both fears and worries diminish our current minutes by detracting from our ability to enjoy them.

The future cannot harm us unless we create a future based on perceptions of fear, anger, and guilt. The only time that contains the power to change our lives is this present moment.

Take Time To Play (39):

If you think you’re tired, perhaps that is just the signal that you need more play. Play builds energy reserves and is a major contributor to wellness.

Stroll on the beach or near water.

Collage.

Listen to music.

Go to a movie.

Board games.

Visit friends.

Laugh for Healing Power (40):

Laughter – internal jogging. Science has confirmed that even something as simple as a laugh or a smile carries with it a positive biochemical response.

The message is clear ‘Lighten Up.’

There is nothing wrong with being ill and pursuing a lighthearted approach to wellness.

Rent comedy videos.

Go to a comedy club.

Old fashioned laugh session.

Evaluate Your Relationships (41):

Toxic stress lowers our resistance.

Wahid, Angelique, Nadalene, Nathan, Mom, Dad, Jacquie, Colette, Shelly, Mickey, Suzie, Camille, and Natalie are the most important relationships I have. None of my relationships need to be put on hold. My relationship with these people is great.

The one thing I could do to make these relationships even better is to be authentic. State your mind. Hold in NO toxic stress.

Get Beyond Why (42):

Why? Why is just another way of saying we are helpless and the situation is beyond our control.

Affixing blame only creates helpless victims.

I am not a helpless victim.

Practice Self-Discipline (43):

No fast-food. Only eat nutritious meals. Exercise every day.

The practice of self-discipline leads to two very powerful life qualities – self respect and freedom.

See Life Through Spiritual Eyes (44):

In my life I can see beauty and grace, even perfection.

Dinner is a time where the minds, bodies, and souls of our family are gathered together to break bread and be nourished. The family’s lives are filled with potential for good. We are there to help each other, to love each other, to care for each other.

Spiritual eyes allow us to see the value of what is simple and readily available in our lives.

Value Personal Spiritual Growth (45):

Human beings, by changing their inner attitudes of mind, could change the outer aspects of their lives.

*Cynicism has no place here. You cannot climb up the spiritual mountain by thinking downhill thoughts.

And pray. Be still and prayerfully listen to God. Don’t beg or plead. Pray. ‘Thy will be done.’ Listen. Act. Remember with God, all things are possible.

One spiritual quality that I would like to make more vivid in my life is gentleness.

Times Three No. 7

Friday, August 14th and I could gladly choke myself or kill someone. Times they are a-changing. Crack.

Saturday

Jacquie is on the 5th floor while Sheldon is on the 7th. Angelique and Nadalene are visiting Sheldon upstairs and Mickey, Toni and I are visiting with Jacquie downstairs.

After a while Angelique, Nadalene, Joey and Sheldon come and join us in Jacquie’s room. It was such a nice evening and it almost felt like we were in my living room.

Sandy made Jacquie and Sheldon bottles of hope and Sheldon loves his. It is Hector the Mexican Cancer Fighting Bastard and Sheldon can even pull Hector’s head off. He loves it. Jacquie’s is quite pretty and she loves hers too.

Sheldon tells how it hurts him to know that he will not see his nephews and nieces grow up. I hope he does get to, wouldn’t that be amazing.

Sunday

Suzie and Camille drop by and we talk and we talk. We talk about how Jacquie has drawn a line in the sand and wants to know directly what her family is willing to do for her and her son. Who will walk through the fire with them? And who will be the ones that can only cheer from the sidelines.

Jacquie has been told that she is making people feel guilty and that they can only do what they are able to do. She is told that she is pressuring people.

I say to Jacquie that she has every right to ask for what she wants. It is now or never for her. People constantly ask what they can do and mostly they want to hear ‘that you really can’t do anything.’ I tell Jacquie that no one has the right to shut her down. She is still able to ask for what she wants and if others think that is pressuring them or making them feel guilty or they are not able (when really the better word would be willing) that is on them and certainly not on her.

Fortunately for Jacquie many people are more than willing to walk with her and Sheldon. Camille who lives out of town will basically be living in town to help Jacquie and Sheldon get through this. Joey has been walking with Sheldon from the very beginning. Joey and Gord take turns sleeping over with Sheldon so that he does not have to be alone.

Many others are taking up many positions and it is truly the way it should be.

Monday

Sheldon, Jennifer and I go to the third floor so Sheldon can get a bone scan.

While with Jacquie I ask the nurse to get physio and occupational therapy to come and talk to us. I ask why Jacquie hasn’t been started on her physio and I say that occupational therapy should be up to help her get in a wheelchair so that she can have some freedom of movement. Jacquie has no motion on her left side so cannot stand or get out of bed to get in a chair. We need them to show us what we can do so that she can at least be strapped into the chair on the left side so that she doesn’t fall over or slide down the chair.

I go to cancer care to get my own treatment. When I arrive there I look like a total scrag and I see another patient that is getting chemo dressed to the nines in a beach outfit. Her outfit was all tropical flowers and she even had on shoes that made me do a double take. They were clear plastic on top and the soles were platform with flowers on them. Seriously, some people are meticulous and I look like I just got up off the floor where I slept all night.

Tuesday

Sheldon, Gord and I talk to the pain doctors and they tell us that the bone scan came back negative. Thank God for small mercies. Sheldon, however, is still in pain. They are readjusting everything.

Jacquie has her first radiation treatment and it took a long time to get her set up. She is in a lot of pain. I ask her if it was okay and she said that there was a four year old crying ahead of her that was getting radiation; and after seeing the little girl having to have it done, she had nothing to complain about. She felt devastated for the little girl.

Wednesday

Camille, Angelique, Jennifer and I are all with Jacquie having a great visit. Jacquie’s two grandchildren (Luke and Grace) are kissing Jacquie’s hands and lying all over her. It is so cute because after they kiss her hand; Jacquie tells them she feels much better and moves her fingers.

Sheldon phones me and wants another hair cut so I run him up the clippers and some clean pajama pants. He is in pain, has a lot of visitors, and Joey shaves his head and his beard. He looks very handsome after.

Josephine and Angelique come to Jacquie’s house to swim. Josephine keeps calling A.J. and wants A.J. to come out of the house. We tell her that she isn’t there and then she tries to get in the house through the patio doors calling A.J. Grace yells from the pool ‘Josephine my grandma is in the hospital where she is getting all better.’ Something inside me cracks a little more.

Thursday

I just left the hospital and Jacquie is barfing her guts up in a pail and Suzie is cleaning it. Jacquie started radiation on Tuesday and started her chemo (in pill format) today. It hit her instantly and I wonder if her nerves aren’t playing a big part in how sick she is, as over the last few days she has been nauseated too. Maybe it is even the radiation. She says she feels to sick to go for the radiation. That won’t be good if she starts to miss the radiation.

I tell Jacquie that she can’t miss the radiation; she basically tells me to shut the fuck up. Nadalene says 'Mom how would you feel being nauseated with your head screwed down to a table?' I know, I know. I just don’t want her to miss her radiation.

Suzie tells me the nurse is giving her gravol and it isn’t working. I ask the nurse if the chemo pill could be doing this already and she replies ‘chemo can be very nasty.’ I reply then give her some kytril or pills specific for nausea with chemo, not just gravol as it is obviously not working.

Sheldon’s pain is not under control and the pain doctor talks to Sheldon, me and Jennifer and tells us that he has discussed the issue with palliative care because they know more about oncology pain; and they told them a different way to give him the medicine that might help him better. Crack.

There is to be another family meeting with the oncologist tomorrow at 11:00 a.m. for Sheldon. I’m assuming treatment will start Monday.

Camille, Angelique and I are in Jacquie’s kitchen and Camille is crying because she misses Jacquie being home. Camille is taking care of Jennifer’s kids so that frees Jennifer up to see her Mom. Camille says she keeps picturing Josephine trying to find A.J. We all start to cry because we want her back home. We know how Jacquie would be making us all tea and something to eat and insisting the barbeque be lit.

Ben calls to tell me his Mom said that she is not mad that I was yelling at her before about not missing radiation and that she did go. They gave her the kytril when Suzie and I left and she felt well enough to go for the radiation.

I started to cry and felt relieved. I told Ben to tell his Mom that I love her and together strong. He does. Crack. Jacquie and Sheldon are resilient and far stronger than they know.

Walking through the fire is when we face the most difficult challenges in our lives. We never look for it but eventually we all go through it. Some will have the courage to walk with us and others won’t.

I don’t know if how we perceive a situation is something we are born with or if it is a choice we make at some point along the way. But I do know that Jacquie walked the fire with me and I will walk the fire with her.

*artwork by Kelly Vivanco