New Job

I applied for a new job and got it! It feels like everything has changed on a dime but for the better for once. I felt like my soul was rotting away here in my home. I wanted to be out doing things but I had nowhere to go. The first job that I went back to (after 5 years) has been really slow because it's the summer. My stamina is still low but improving and I think my excitement about where I'm going is helping tremendously.

The last few years an idea had developed about the atmosphere I'd like to be in. It actually feels somewhat essential rather than a choice. I need to be in a creative environment working with other creative people. A place where my skills are used and appreciated. Somewhere, where I feel charged up to get home and do some creative work like painting. I thought that would mean me creating that for myself and being self employed.

I tried to rent an itsy bitsy studio space a few months ago but it disappeared as soon as I applied for it. It felt like another small loss in a grand series of losses. I started feeling like there may never be a better space for me, or any place on this Earth. I feel disjointed and like I don't belong. I live in a beautiful neighborhood in the most desirable place in a very desirable city. Gratefully I live in social housing now which has kept us from being homeless but we don't fit in here.

The neighbors don't speak to us and everyone keeps to themselves where I'm used to knowing the people around me. The energy here is bad. I realized why people here won't talk to each other when I had the SWAT team surround my house because the person two doors over was selling drugs and had the neighbor on the other side of me subtly terrorizing me because my son put a millimeter ding on his car door. Our spaces are squeezed together and I have plenty of dings on my car door from the other neighbors and I paid him to have it repaired but this guy went ballistic and threatening. I had to request to move my parking space and avoid him until the day he was hauled away by the police for battering his family. Not so nice.

I'm sure most of the people here are probably nice but we pass by with no eye contact after me trying for 2 years to say, 'Hi' to them. It feels like an alternate universe living here. Beautiful yet as a small complex we are unwelcome.

This loss of feeling in control has hit me hard.

So applying for my first job helped me feel a bit better. Applying for and getting the second has made me feel useful again.

I work part time for a small local clothing design company that is far better than I could have imagined. Where I felt listless, I now feel energised. I'm scared of not physically being able to keep up but so far so good. I'm happy and I honestly can't say when I last felt that. I suspect it was two years ago before I moved here. I need to get out of this place. Getting out of this mountain of debt is going to be one hell of a struggle but at least I will be able to try.

I need to instill a feeling of confidence in me somewhere. I'm so happy to say it has started.

Trying

The last 2 months I've been exercising again. Every time I've been able to get a bit stronger since my transplant, I have a huge setback by getting sick. It got to the point that I was afraid to try. I actually have an instinct to stop whatever I'm doing to keep my heart rate down. That's because I've always exceeded my capabilities and ended up bed ridden from exhaustion. There is nothing I hate more than being kept down waiting for my body to recover.

I wanted to mention that the reason I have such a hard time recovering is because I'm one of those lucky folk that ended up with chronic graft/vs/host disease from my transplant. As hard as it can be at times, it's not as hard as I had imagined it would be. When I read my binder that the hospital gave me on bone marrow transplants it gave me the percentages of those who would die from the procedure. Then it talked about the percentage of people who may get acute graft/vs/host. Then it talked about the percentage of people it would be fatal for. Then it talked about the percentage of people who would get chronic graft/vs/host and the percentage it would be fatal for. It was like reading a horror novel even with the perky little clip art. I was convinced that I would not be one of the %25 that would suffer with the chronic kind. I was happy (if you can call it that) when I had the acute GVHD but then it continued on.

Comparing it to the fear of what I thought it would be like, it's not that bad. It's fearing fear itself, I guess you could say. The good part of the GVHD is that it helps ensure longevity. Also, exercise in transplant patients is shown to increase our life spans.

So for my mood, that's a tougher one. In the past I dealt with my anxieties my working 24/7 and exercising. Post cancer, that's been impossible. Every day now that I get out and do something like hiking up the mountain or up hills in my neighborhood, I feel a strong sense of accomplishment. When I get home I feel like I'm being swallowed up by my circumstances.

In my pre cancer life I had to deal with harsh realities and I have experienced depression before. I did everything I could with my doctor until she told me there was nothing more she could do for me. Then I started counseling, not believing in it but determined to find a way to ease my chronic anxiety. The counseling was very helpful. I also started working even harder to change my circumstances. The more I was actively trying to fix it, the more in control I felt, the stronger I felt, the happier I felt.

I know medications for depression help people but they don't help me. I help me. The more I do to change what I've been dealt, the more in control I feel and the better I feel.

All through my transplant I reacted oddly to my medications, I turned into a big pain in the butt for my oncologists. I guess my chemistry is just different.

So I've been exercising for 2 months and am feeling stronger. I finally was able to go back to my old job but there are hardly any hours due to it being summer. I knew I need creativity in my life but I have been finding it so hard to be self motivated right now. I feel like I'm piled with impossible things.

So I applied for another job. It's in a creative studio atmosphere with other creative people. Somehow I managed to get the job even when there was a pile of applicants. So far I ride my bike downtown and get to work in a bright beautiful happy place. It's everything I wanted for my life but I'm working for someone else rather than doing it on my own. I hope I've found a way to fill those needs even if it's in a slightly different format. I'm flat out exhausted and in pain when I get home but I feel accomplished. I hope this new schedule helps me correct the imbalances that I live with right now.

When I got there on the first day I found out they had seen my website and knew that I had had cancer. I hadn't brought it up in the interview, not that I didn't intend to but it never came up. I felt it would have been like whacking someone on the head to bring it up out of the blue. Even though I ended up chatting with my employer about what I'd been through, there in that environment the cancer seemed small. It seemed like a small side piece of my life rather that the suffocating omnipresent monster blocking out the light. And that's what I'm looking for. Rather than seeing the ruined city, I want to see the sunset over the fields.

Changes

My 5 year bone marrow transplant cancerversary is coming up quickly. I've been scarcely able to believe my life has changed so much in 5 years. Five years ago I had three young sons at home, I would get carded for liquor and I felt I had everything under control. I had a future, I had goals and a beautiful life spreading out in front of me. I lived in a beautiful place, had friends, savings in the bank and even a love. Everything was turning out correctly for my master plan.

I had worked incredibly hard for years to gain the opportunities that were laid out before me. I was applying for and expecting a big fat scholarship for my MBA degree which I was going to take over seas, giving my sons a new experience and view of the world.

I felt I could do anything, really, anything. The world was waiting for me.

Now? I see a big blank pace where my life used to be. In all my planning and preparing for success in my life, I had gotten to the age of 35 in my mind. I hadn't really developed an idea or concept of what I would be doing afterwards. Now I'm 38 and I could never in my worst nightmares have imagined this.

First cancer and then living with graft/vs/host disease. I have managed to finally get back to work and am very pleased about that but I still can't imagine my future. I feel like I am in the final stages of my life, how I would expect to be thinking in my 80's yet I'm 38. My body seems so old now. One minute I was on a date with a 24 year old (not my love) and then 6 months later I was getting mocked on the ferry by the same guys that would have been trying to pick me up before. How did I go from looking 24 to like a soccer mom in 5 years? My hair is thinner, wrinkles have moved in as well as 30lbs.

I really hate myself. I realize this is depression from long term illness creeping in but where the hell am I? What am I doing?

Instead of three sweet little boys who need me, I have one adult son, 21, and two self absorbed teenagers. They don't need me. They need their friends, their girlfriends and I am now the person that keeps them from having fun. This was a developmental phase I was completely prepared for before I became incapacitated, but now in this vulnerability it seems very difficult. One girl that's here often loves to make comments about how old and ugly certain people are. There was an actual comment once about, who cares if a commet killed us in __ years because they would be SO old anyway. The age they were talking about was 38. These stupid little comments shouldn't hit me so hard, but they do. I feel disfigured even though I look my age.

I have had a lot of adversity in my life but I plowed through, confident in the knowledge that I could tackle any mountain. Now the mountain is on top of me. The more time goes by the harder this seems. I was confident I would be better in a year, then in another year, then in another. Now I am not confident of anything.

I have read books on cancer and mortality, I have read books on recovery and loss, recovering art and creativity, I even recently read the entire set of Twilight novels. This in itself is a huge accomplishment because I couldn't read for almost 4 years post transplant. My brain was scrambled and the pages of words would scramble as I tried to read and retain them. As a child I would devour a novel a day.

I am a fixer. I need to fix problems that crop up in my life, I tackle them like they are marshmallow peeps in front of a hungry toddler. As much as I try and tackle this post cancer life problem, I feel like I'm trying to fill a bottomless pit with shovels full of feathers.

Da Funk

I've been floundering recently. Almost three years of being ill in bed has taken a huge toll on my body and my psyche. I've gone through a long cycle of fear, anger, hope, and an endless waiting for things to get better. I started out with a very solid belief that I would be fine. But after 3 years in my bed and struggling to get through every day I eventually wondered, will I get better? No doctor would say.

The prednisone and all my other drugs have made me so ill. My strong band of hope that I would see the end of this has grown thinner and thinner until it was only a battered thread.

This whole cancer dealy was only supposed to be a bump in the road of my life. One day I would wistfully look back at it, throw my head back and laugh in a conquering sort of tone. Now I know I will never be the same. I realize it's been said a hundred times over by a hundred different people in a hundred different contexts, but it's new to me. I will never be the same.

Sadness has crept in. Frustration has seeped into every inner corner of my being. With it came listlessness and apathy. Pain, medication, severe sleep and fatigue issues have clouded my brain making it feel like it's stuffed with cotton.

I feel like all the control I've had over my life has been taken away from me. My body has become my betrayer.

I felt a little like putting my head in the oven.


Perfect :) I find being severely at the bottom a real catalyst for change. There is no place to go but up. I've decided to kick this suck hole despondency.

I made a plan. Despite all the things I struggle to get done every day, I am going to come first. I took myself straight to the doctor and to a Cancer Agency counsellor as well as a massage therapist. The doctor made a priority of sorting out my lack of sleep. The Amtitriptoline made me so much worse. I tried it for about 5 days but after a midnight online shopping spree I had no recollection of, I went back to the Dr and stopped taking it. The upside of that is I have been receiving nice little "presents" in the mail for the last two weeks. My GP upped my current sleeping meds which don't give me any trouble. I've also been off my main tormentor (prednisone) for 4 months.

Getting a better sleep has made me feel a bit better which in turn has enabled me to do a little more. I've been forcing myself to go twice a week to my arthritic waterfit class. No matter how suckathetic I feel, I go. When a friend asks me to go for a walk on the beach at an unGodly hour, I say, Yes. I was asked to go to a salsa dancing class. I said, Yes, and went but was only able to sit and watch. At least I walked up the stairs. In short I am stretching my boundaries and if I suffer after, at least I know I tried.


I hurt, I feel awful, my body is protesting but I feel hopeful again. I have goals again. I feel like I have some control in my life again. My body is my goal. It's not my betrayer, it is a part of me that has had a hard time and deserves a little compassion.

If I'm not going to save me, who will?