My Life as a Kick-Ass Cancer Survivor

So now that I have celebrated my 4th year post stem cell transplant and left cancer far behind I have a new feeling coming over me.

It feels like a warm, gentle summer breeze sliding over my skin. Like the cotton from the poplar tree that looks like summer snow, it fills me with a sense of calm wonder.

It's a gentle sense of relief.

As cancer patients we are always on alert to our bodies and the grim reality of how close we may be to have something fatal happen, even when the cancer is gone. Stepping out into life when the chemo stops feels a lot like going about our lives pretending we can't feel the breath of death on our necks. No one seems to understand. In fact they can't understand unless they have been through it themselves. There's always the anxiety of wondering if that's another lump or in my case if the weeks blood test results will show blasts.

Truthfully it's hard for me to even think the words blast much less type it here. I scour my blood test results, once a month now, looking to see if there is any odd morphology results. When the the results say they were sent for further analysis because something was off I feel the light pricking of horror. I can see the distress my organs are in due to the graft vs host but I ignore it and go on. When I don't hear anything in a few weeks I relax a little because no news is always good news.

When I was able to leave the hospital after my transplant I refused to give fear the time of day. I refused to let it rule me, I refused to let my mind wander to the 'what' if's, and I refused to dwell on it. Fuck fear. If I was going to die tomorrow I wasn't going to waste my time going out that way.

My life is MY LIFE and I will always keep it that way. It's kind of hard to maintain that stance when you hear of acquaintances predicting your death, have excommunicated 'friends' call your parents asking to let them know if the cancer comes back and a lot of other bullshit that goes down.

This shit is hard. Living post cancer is hard.

Well, my 4th rebirthday felt like a release. I know the first 3 years statistically are the ones to mostly likely have a recurrence. Cancer patients are weighed down with a lot of stats. Before my transplant I thought, "fuck the statistics', but then I realized the the stats came from the hospital I was in. Out of all the hundreds of people that go through their doors, a certain number don't go back out. They weren't just random numbers.

As I went through the process of the chemo and my transplant, the people who I had spent all my time with in hospital, and had gotten to know, died. One by one, they died. People my age, people with spouses and children. How do you deal with that? I felt terror and guilt and anger and grief all while trying to stay alive. I lay awake in the hospital aware that the nurses were listening to me breathe and while they did that I was petrified that I would stop breathing.

When they passed on, I pacified myself by saying over and over that they unfortunately were taking the bad part of the stats for me and I was the percentage that would live. I was right. I may not be at my 5 year point yet but I know I am right.

As hard as I tried to get though all this without having deep effects, I have failed. But is that a bad thing?

I grieved and wondered why I was left while others were gone. I am completely aware that it's survivor guilt but that doesn't do anything to alleviate it. I'm so sorry. To the beautiful people I had the privilege of knowing and sharing that intimate time of our lives with, I'm so sorry that you had to go while I stayed.

But I am here.

AML is a brutal cancer but I stand to let the world know that it CAN be beaten. Cancer is becoming more and more a chronic disease rather than a fatal one. With every year that passes the medical science gets better. The hope is only growing.

So now that 4 years are behind me I feel that old feeling of security sifting over me. Of course there is no real security in life but I feel like death has left me. I don't feel it's presence like I used to. I'm on a loose leash with my oncologists now.... the graft vs host problems are winding down. Really, I see no reason why my life can't just get a whole lot better from here.

I'm heading into some uncharted territory and have my life to get back.

I have been writing this blog since I was 1 year post transplant. It was in reaction to my frustration and anger that I was still very sick and incapable of even taking care of myself. I needed to feel like I was accomplishing something and writing little snippets of how I saw things kept me going. Through this process of isolation from the world I have been able to feel like I was still worth something.

This blog has brought me more than I could ever have imagined. It connected me to others, gave me some self worth, helped me open up and to mentally process what was happening to me in a way that was mine.

And people responded. It turns out I wasn't the only one feeling like a square peg in a world of round holes. So in a way I accomplished my original goal. I couldn't find any upbeat, inspiring, funny, slightly morbid places to see on the net so I made what I would have liked to have found.

At the time all I could find about living through cancer was misery and sorrow. I wanted light hearted and real. Cancer is not a death sentence but it is a life sentence. Might as well laugh about it and cry about it when needed. And what I mean about life sentence, is that it's a heavy experience that you'll keep forever. It's part of you.

Every experience that we have ever had, we can use to our benefit.

So now that I feel like a door has opened to the rest of my life there are some things I've been dying to do. Not literally of course. Every time I felt frustrated, overwhelmed and hopeless, I wrote down something I would love to do when I was better. Some of it was simple, like feeling my bare feet in the sand and on cool grass rather than a hospital floor. As a result, I didn't wear shoes or socks for over a year except when I had to. My toes froze on many occasions but I was so happy for it.

My list has been growing and I finally know I can begin to tackle it... or should I say experience it? This is NOT a bucket list. This a list about reentering life and living like I mean it. I know every moment I have is borrowed and valuable. There is no time to waste.

*list to be compiled and posted tomorrow, or whatever tomorrow means in my current world, which could be in a few days*

The Shut in Steps Out

My days in New York were more than a conference or a place to get away for a few days to. Now that I'm back I realize was an attempt to break out of this grey place I'm in by default. I feel so much like my life is out of my control and I've been forced into this bullshit rut of mediocrity. I really hate this place I'm in in every way possible.... yet I'm alive, right? Aren't I supposed to be humbly grateful that I've survived the fearsome clutches of cancer? That I'm 'supposed' to roll over and quietly accept that my life is fucked?

I hate this. I hate my life so much that I can't even be passionate about it. I feel like a wet noodle.

My memory is fuzzy and my life is not the same as it was before. I'm not even sure which way I'm supposed to be going. I stay home because of my fragile health and I'm really not sure what to even go out and do. I look out my windows and I don't recognize this place as a place I want to be.

I had a meltdown a few weeks ago where I was exhausted beyond coping and angry, desperate words just fell out of my mouth at my sons. It was almost like I was watching someone else control my actions.

I am one hundred percent about being responsible for ones own actions yet I fucked up. I was half asleep and my sons were hanging around in the house chatting and doing something on the computer. They were late to school and didn't seem at all concerned about getting there and I lost it.

I had this overwhelming fear that they would fail, have to repeat a year and then I'd be stuck in this house for an extra year. I yelled how I don't want to be here and how this isn't how my life is supposed to be. I yelled at them about how they expect me to spoon feed them and I can't take being here for an extra year. And I yelled it again, 'I can't TAKE this for another year", until they ran out the door. I'm only here to give them a stable few years to finish high school because I can barely cope with life as a mom now. I feel angry and scared and pissed off beyond all reason, yet I keep it to myself.... until I overflowed like a Menthos dropped into a 2 litre bottle of Coke.

I cried dry tears all day because my fucking tear ducts don't work and then I cried because my fucking tear ducts don't work. How is a person supposed to get a good cry in? Why is it that something as fundamental as crying or sleeping can be taken from you?

And if that doesn't convince you that I get the parent FAIL award... it was also my youngest son's 15th birthday. I sobbed as I cleaned the house, blew up balloons, scrubbed dishes, baked and iced a cake. I went over and over what I would say to them when they got home, if they came home. I tried to figure out a way I would earn their forgiveness for the horrible things I said. I felt like a monster.

By the afternoon as I was finishing the icing I was at the kitchen window putting the last touches on. Suddenly a couple of glowing, smiling faces popped up at me. Not only that but they had each brought a friend with them. I felt so overwhelmed that my awful behaviour had rolled of their backs and they were excited to get home to have the birthday celebrations. That's when I felt truly, truly grateful.

Grateful that I have such wonderful boys that somehow understood how much I love them and that I'm human and can crack under a feather. I apologized and they both hugged me and told me it wasn't a problem. They acknowledged that it was partially their fault and that they should have gone to school on time. They also didn't seem bothered when my eyes were gross, red and it looked like someone had punched my in the eyes from my body's feeble attempt at crying all day. All three of them and their friends were smiles and cheer singing happy birthday, batting around balloons and having a good time.

Not sure what this all has to do with New York except that I desperately needed to prove to myself that I could get a piece of myself back.

All my life plans and the things I had worked for have been thrown out the window with little hope of getting them back. The more time that goes by, the more I realize the game has been changed forever. The city I live now was supposed to be a place of transition, not a deep rut.

I'll never forget the week I received my transplant. I was in my hospital bed, dealing with all the chemo with the happy thought that I would get it done and then continue my plans of travelling and getting my MBA in Australia. I will never, never forget the moment when I was given the first beating of my spirit. My oncologist was at the end of my bed and I was chirping on telling him my plans for the future. That's when he told me I wouldn't be able to leave the country for 5 years. As he saw my look of utter horror and I argued with him for a bit, he said it was possible with the best case scenario that I may be able to travel to somewhere like New Zealand after 3 years. Apparently New Zealand is on par with Canada for treating BMT patients.

That's the first day a piece of me broke...

So after a year of being deadly ill before my diagnosis, 3 months of hospitalization and aggressive treatment...

...just shy of 4 years later and 2 days after my last immunization I hop on a plane.

It's about freaking time.

Moving and Other Dramatic Change of Events

I guess I'm moving. Really, I knew either way I would be moving out of here.

It's crazy how life can turn on a dime and my dime has been turned more than I want to count. It's pretty much scuffed up at this point. Sometimes things slowly creep up on you and sometimes events are like a swift, blind punch to the face.

I went to my oncology and oncology/dental appointments last Thursday. The appointments went mostly as I had expected. The graft/vs/host has returned and my mouth is as uncomfortable as ever. My eyes have the GVH dryness, I'm having gut pains and my Dr is concerned about Ms Vagina again.

Ms Super Vagina had been given the thumbs up 3 months ago but problems in the mouth=problems "down there". Anyway, I giggled to my Dr that the mouth problems I can live with. The worst part is my lack of being able to wear lipstick, ha ha. We chatted about our sons (I have 3, she has 4) and I talked about how much my oldest (18) has been through with my illness etc. and how he's finally pulled himself out of his funk. The next day I found him with a black eye.

My onco-dentist said how mild graft/vs/host is a good thing because it keeps the leukemia away. Way to give a positive spin...Dr. So my medications are not being lowered, I repeat, NOT GOING TO BE LOWERED. That's okay. After this heavy duty of a cocktail of drugs for this amount of time, I'm probably completely preserved.

I did hear one thing that I didn't expect. My onc said, "We don't expect it to come back". My ears prick up. Excuse me? What? You don't expect my leukemia to come back?

My world is changing now. It looks so different suddenly. What's that I see?

I think that's my future.

My New Career

I worry about my future. At 20 I had such grand dreams of going to school, buying a house and having a high powered career. I was just finishing my degree at 32 when I was hospitalized. I was half way through applying for my MBA. Things were looking good until the whole cancer inconvenience.

Fast forward to a year and a half later.

My physical and mental abilities due to treatment are low but improving. I get very scared when I am unable to get out of bed for days. WHY WON'T MY BODY MOVE?

So that leaves me doing things such as plotting relentlessly on what I'll do to improve my situation.

So let's review my skills and abilities. Previously I decided I had all the qualifications to be a paperweight. I think recently I've moved beyond that and am now contemplating on some of my new skills.

Other than laying around plotting, I realized I spend a lot of time dealing with my medications. This is a photo of a days worth of meds.

Some of the meds I have to cut in half to get the correct dosage. That's when it occurred to me...



....I could be a crack dealer.



I'm somewhat excited at the prospect of my new career. I'm sure it pays a lot more than being a paperweight.