Happy Valentines Day

I know I've been AWOL for a while. I've gone back to work and it takes up all of my time. I did manage to get a few days off and spent a day full of solace, painting the large canvas I had gessoed recently.

I had no intentions for the canvas. I just grabbed a bunch of colours, a few brushes and went for it. I find painting a good way to process events & feelings in my life. Things are so good now I can hardly believe it, yet there is a lot of pain and uncertainty in other areas.

So I got out my paints in the chipper colours and painted out my pain. Holding the brush, I dipped into my paints and felt the texture of the much used canvas becoming something new.

Work

I know I've disappeared from the blog front. I wish I could say I was out having great summer adventures and I am in a way. It's been taking everything I have to work at my new jobs. Jobs plural. I never ever do things halfway, I'm in a %125 or I'm out.

I'm so ecstatically, over the top happy to be employable again, you have no idea. Five years off for a naturally ambitious person like me is a slow painful experience. I felt irrelevant, unneeded, incapable and useless. I spent each and every day pinning about the day I would be well enough again for life. Five years is a hell of a long time to be trapped inside your own house with your personal demons (and I don't mean my sons).

I found that it was like a slow motion life-passing-in-front-of-your-eyes kind of gig. Every moment of my life, often painful ones, bubbled up to the surface. Truthfully they were things I had blocked from my mind with work. Keeping busy was like a drug to me before and this post existence is like being strapped to a chair forced to watch movies of my life, highlighting the mistakes, the losses and all that. Painful. I've made mistakes. It's hard to know what the worst ones may have been.

I've also done some things damn well.

I always seem to be going farther than my own capacity. Therefore one job turns into two. After the hellish first couple of months where I was in complete pain until I scraped myself out of bed to go back the next day, I've continued to go too far. I'm only working 3 shortish days a week and I have shifts of my other job tucked here and there. I decided to forego my summer for this grand experience and I'm mostly happy with it, except for the fact that I haven't gotten to enjoy any summer!

That and I felt so confident like I was getting my feet again, that I booked the first two weeks of August working. I worked almost every day. Near the end of the two weeks I felt myself melting and my functioning took a nosedive. It was even noticed by my boss which felt like a real kick in the gut. I go to work and while I'm there I swing between, "I can do this! I can do this!", to, "Oh my god, they are going to fire me" I seem to even manage to tell myself they are going to fire me when I'm doing good job.

I have such high standards for myself that I do things well, but I drive myself to the brink of insanity. I guess I'm never quite good enough for myself. Anyway, I just got carried off on a tangent. I'm tired. I worked myself to the point on non functioning (did I say that already?) and it's been hard. Too tired to eat, too tired to drink, I crave goodies when I'm laid out like this. I have completely crashed. My house of cards has come down.

What did I expect?

I had my three days off hoping to recuperate and I went back to work in the same state. I managed to get through another week and am trying my best to recoup before going back again. I am on my third consecutive pajamas day. I even had a shower yesterday just to put them right back on again. If my other job calls I will have to say no, I'm kind of scared.

I need to get back to it and keep going, not just lay on the floor and become useless again. I've been too tired to even sit at my computer and respond to emails. The lousy thing is I didn't even make it a financially worthwhile compared to pacing myself through the month. I'm nowhere. Well, I'm not nowhere, I'm employed.

I love being employed. I know my limits now and won't push them again.




Well heck, who am I kidding.

Walking Amongst the Working

I'd say by now I'm semi-completely, officially one of the working. It's so real and happening that I feel like I'm waiting for the other shoe to drop. I'm really happy about working, more happy than I can even type out here. I had started to feel like moving on was a dream slipping away from me, day by day.

What I'm excruciatingly happy for right this second is that I'm not in excruciating pain. Usually I come home from working my short day at the job (Awesome!) and can hardly walk because the bottom of my feet and hip hurt so much it feels like someone beat them with a cane all day. No exaggeration. I wonder how so much pain can be inflicted by such a benign situation. It's not like I have cords of wood strapped to my back walking 40 miles up hill in bare feet all day but my body doesn't know the difference.

I get home and crawl up the stairs to my room where I turn on my Netflix. I don't move until the next day when I go and do it again except maybe to put on a load of laundry.

That's when to my delight, I discovered the intercom button on my phone. I now call my sons every few minutes to ask for something whether I need it or not. They bring me dinner, glasses of water, I sent one boy to fetch me a brownie and when he came back empty handed because they were out, I sent him up the street for a chocolate bar. I give them instructions on chores to do in the house. Why didn't I know about that button before?

Occasionally I like to throw in a compliment just to keep them on their toes. *Ring ring* "This dinner is really good, thanks.", "Uhhh, your welcome" *CLICK*

Sometimes I ring just to rub it in their faces that I have 2 jobs. Whenever they give me lip as I lay in my bed after the fifteenth intercom call, I say, "Oh yeah, try having 2 jobs you little loafer. Your leukemia cancer survivor, bone marrow transplanted, graft/vs/host riddled, vagina surgeried, medicated up the hoohaa mom is kicking your A.S.S in the J.O.B department. The satisfaction that gives me has just keeps on giving. I could do it all day but after a while they claim 'they didn't hear it ring'.

So today I'm not in excruciating pain. Half that. SOoooo, that would be awful pain if it's half of excruciating? I hope to arrive at regular pain in no time and maybe dare to dream of a mildly painful workday. If only. I'm so glad I have a high pain tolerance. It's been a life saver. That and the intercom button.

Coping with the Unknown

Waiting for this MRI is difficult. When I received my cancer diagnosis, it was immediate but I did have to wait to see what subtype of AML I had. That was torturous waiting to see if I had the bad one or not. It turns out I did but not the worst.

Waiting in so much pain for my hip to be diagnosed is tearing me up inside. I just feel this incredible grief overcoming me. It could be the pain talking I guess.

My son asked me today if I'm going to become like 'House' and unfortunately I think I am.

So I made an appointment with a cancer councilor and am trying to sign up for a post cancer class which deals with issues of getting healthy and what to do next. I also signed up at the YWCA, who were very good to me today. At this point I think I will start going to the pool to take the weight off the hip joint. This body is becoming such a dead-weight for me.

I used to be a runner. I really don't know what to do if my physical abilities are taken from me forever. I wish I could still have those forward thinking dreams where I could see my life laid out for me. If I work hard than x will happen etc.

Right now my life in the future is still a big empty hole. I feel so alone. The worse this pain gets, the more I feel alone and locked up in my body. There is no one to share this piece of myself with.

I'm going to try and paint tomorrow.

MRI Me, Baby!

I have my important gallery opening tonight where they're going to pat me on the back for my photo but all I can seem to do today is stress. I'm meeting some friends later and my son who are coming with me to the opening and I should be excited. I'm sure I'll have a lot of fun.

The problem is I have a long awaited appointment today with an oncologist. I've been doing well and had graduated from having to travel to Vancouver all of the time. This doctor is coming here because we don't have any bone marrow specialists here on the island. I'm lucky that I only have to have these appointments every 6 months now. Traveling to them before was such a huge chunk of my life and I had it all down to a fine science.

Seeing him/her here and the fact that it's someone I don't know is making me feel like a fish out of water. Especially because there are problems.

When I go see him/her I need to discuss the problems with my joints and let him know that I need an MRI asap. My GP is worried about my hip pain and so am I. It has eased off a little pain wise but it's still there. Because the x-ray was inconclusive they need to look inside of me to see what's going on.

MRI me baby.

Pain & Fear

Here I go again,

and again,

and again.

My pain free days are good days and ones I take (very deservedly) for granted. I've begun to journal my pain levels because I have a very high tolerance and a very short memory when it comes to pain.

I find it tends to sift into my consciousness and then out again as if it never happened, although I always know a pain free day when I see it.

Sometimes it's my gut, sometimes it's my muscles, sometimes it's some heinous menopause symptoms and sometimes it's my prednisone induced arthritis.

My joints ache and bother me like I'm twice my age and it can be uncomfortable at the best of times. The cold seems to be the worst for it and my joints stiffen like I've been hit with a freeze ray gun (how cool would that be?) When it's at it's worst I can usually slide into a hot bath and the heat soothes it. At the recommendation of my pharmacist I've been taking fish oil pills but the pain is getting steadily worse.

I've noticed that my right hip gets hit the worst. Sometimes it feels so bad that it seems like a whole other pain. It feels like it is deep within the bone and the pain radiates down my leg.

It's getting worse despite the fact that the weather is getting hotter and hotter. My mother commented on how strange that is because it's been so warm. Last year the summer gave me several months reprieve with little to no arthritis so what's up now?

I've started taking Tylenol and that doesn't even take the edge off. Yesterday I started to become concerned but it's Friday and my doctors office is closed until Monday. Now that the pain is in the forefront of my thoughts I'm getting downright scared. The pain in my hand has become a stabbing one and my fingers are going numb. I am unable to function or get anything done. Holding a pen sends a stabbing sensation. My eyes are so dry that this extra heat makes them feel like they have been burnt.

Unfortunately long term, high dose use of predisone can cause something else that's a lot worse...

Avascular necrosis. It's bone death. It tends to happen in hip joints and leads to bone destruction and eventually needing a hip replacement. The fact that I even have something like this to be scared about just boggles my mind. I'm only thirty fucking seven.

I used to be a runner. I was a healthy eater, I never smoked, did drugs or drank alcohol. I cleaned my home with natural cleaners. I exercised every day and lived a healthful life. What the hell happened?

NO FUCKING WAY.

Anyway, despite all that, here I am. This is my life and this is what there is to deal with. Suck it up as usual, shove the fear away and make sure I get into my doctor office ASAP.

Arthritis

The sunshine is out and the city is heating up including my arthritis. It gets me in the hands and hips the worst and was caused my long term high dose prednisone. After the last 4 days of increasing agony, this evening it was too much.

I asked my son to stick his elbow into my back to try and relieve the pain but apparently that is WAY too close to your mom for a 15 year old. Instead he put a sock onto a broom handle and jabbed my back with that in the hopes that I would stop bugging him. It worked. I stopped asking and realized since there was no masseuse at my immediate disposal, there was only one thing that could be done.

Chocolate.

And not the expensive kind. I need the cheap hit of over sugared and coloured coated candiness.

I couldn't take it anymore. I took some Tylenol and hopped in the car to head to Walmart because that is the land of gargantuan sized, cheap junk food. They have entire isles of nothing but cheap chocolate in varying forms. When my son asked me where I was going I told him that my arthritis was killing me and was begging for M & M's. He curtly told me that my arthritis DIDN'T have a voice and that it CAN'T ask for M & M's.

Of course I laughed quietly to myself and forgave him for his obvious lack of life experience.

Two Steps Forward, One Step Back

Ugh. So much has gone on recently. Lots of good news! I went to my usual oncology appointment last Tuesday and my Dr. decided that my body is finally settling to a good place. My blood work looks normal (add squeal of delight here) and that the GraftVsHost has calmed down to a safe point. Safe enough to start decreasing my cyclosporin (anti-rejection drugs) and drop most of the other meds. My body should finally be able to take care of itself!

It was a bit of a sudden occurrence being taken off of so much so quickly. A bit shocking, really. I had mentally come to a point where I was just accepting that who knows when I would ever be taken off all that crap. Life saving crap, that is. I also don't have to go back to see her for 5 months! As I walked out of that appointment, I felt I was walking out a free person. I still have to have my bloodwork taken every two weeks to monitor my progress but that's okay.

To me the mental picture of this moment looks like a runner carrying a torch through the finish line. What a looong haul this has been. I feel a longer term of hope is seeping through to my consciousness. I can have bigger hopes now and longer term goals. I'm pretty damned excited.

I'm also exhausted. I've been pushing for my doctors to get to the bottom of why I don't sleep so that I can. Nobody can function or heal when they are severely sleep deprived. I had extra bloodwork done and they determined that I am severely menopausal. Severely! Many apologies to my sons for my moments of severe menopausal snarling beotchyness.

My oncologist explained that few people sleep through the transplant process which lasts a couple of months. Mine then probably switched over to chemically induced menopause which for me includes not sleeping. I hear many women close to or into their 50's complaining about the same things. Not fair at 36! Whatever, life isn't fair.

So my GP has switched me over to amtitryptolyne (probably spelled that wrong) to help with my sleeping and to get rid of all my body pain. I was quietly suffering from several types of pain 24 hours a day. Muscle pain, carpel tunnel, nerve pain arthritis etc. Well, just like magic it's gone! I can't even believe all that pain is gone. I also can't believe that I considered that much pain to be the least of my problems, in fact I barely even mentioned it to my doctors. I just thought I had to suck it up. My GP felt I had the body pain because I didn't sleep, therefore my body could not heal. The pain then in turn kept me awake.

Life really can change on a dime. I had been really hoping that my next spin on the dime would land me in a better place. I think I'm heading there.

Because of my night time medication switch I've been deprived of over a week of sleep because the amtitryptolyne takes 4 to 6 weeks to be fully effective. I'm about at 3 weeks now and it has been helping but I'm so tired I can hardly move. I've even gained almost 10 pounds :( That may also have something to do with the strawberry cheesecake slices I've recently discovered.

I feel like hell and have bags under my eyes again but I know that things are going to get better from here. Much better!

Here is the list of medications that are changing and/or have been dropped.

zopiclone for sleep - changed to amtitryptolyne
cyclosporin anti rejection - dropping and will be off in 3 months
fluconozole anti fungal - dropped!
valtrex anti viral - dropped!
septra protects my lungs from pneumonia - dropped!
pariet for acid reflux caused by my other meds - being reduced

prometrium for menopause - will always have to take it
estrogen patch for menopause - will always have to take it

Several people I know have said that I look like me again. They also say my energy has changed for the better. Hope shows.

Fucking Pain Chart

I made a fucking Pain Chart today. I feel some fucking level of fucking pain every fucking day from muscles, arthritis, carpel tunnel et-fucking-cetera. Most fucking things cause some level of fucking pain including any fucking thing I like to do... which really sucks balls. My newly found fun of hooping fucking well causes my hips to fucking ache. I feel like I could fuck'n well scream. I call no fucking fair because this is completely fucking sucktastic. The fucking pain chart will hopefully show me exactly what leads to what fucking pain I have the next day, then hopefully I will be able to minimize it.

And you may have noticed my colourful new language. Apparently cursing can help relieve pain according to this news article. Funny how things work. I found that article today, the day I made the Fucking Pain Chart.

Pain is My Playmate

I'm laying here covered in hurt. During my hiatus from the computer I visited my GP about my carpel tunnel. It had gotten so bad that my shoulder hurt and I couldn't hold things or drive with out serious pain. Every thing I do feels like walking through neck high mud. It's hard.

When I asked my doctor about what was happening and described what I was going through, she told me I don't sleep at night and end up wrenching my body into weird contortionist angles to try and get comfortable. She asked a few questions and BINGO. I realized she was right. She told me to go get wrist splints and then one of the molded pillows. She also raised my sleeping medications. The first few nights I felt like a freak. Isn't all this cancer/stem cell/puffy prednisone head shit enough without adding insult to injury with cripple splints? I felt like a monster.

I drove around to several stores looking for one of those freak pillows. I was so steaming angry while I was shopping that I'm sure I was spewing nuclear grade energy out into the biosphere. There was no one anywhere in site to help me find the freaky P. I had to drive to another mall. There was a young couple registering for their wedding in the line in front of me. I had had it! Then I growled at the price and dickered her down until I got it for $24. I left down that escalator hoping to not end up like this gentleman. (escalators are my nemesis). Damned you vile escalator!



After I got home I braced for an uncomfortable night but as soon as my head hit the much expensive pillow, I was in lala land. I slept like a rock.

After a week I started to feel a lot better. My pain started slipping away. My days were easier and I was functioning at an acceptable level for the first time in a looooong time. I realized I could have a life! I bought a few clothes and a couple of hair accessories and I felt human again. I even started a waterfit class! So, it's an arthritic class for elderly people but it is the right place for me right now. My sleeping pills were only raised for a week, so I'm slipping down into the pain and soft tissue damage at night again. But at least now I can discuss this with my oncologist and see what she says.

I've been in bed these last 2 days because the elderly people kicked my ass in that last class. They are much to fast for me! I'm really not sure about going again tomorrow but we'll see. Maybe I'll be the one kicking ass soon?

At least now I know there is a solution to my pain problems and that makes me very happy and hopeful.

Ultrasound

I've had my ultrasound, now I just have to wait for the results to be sent to my doctor, and then for my doctor to call me.

The sonographer was really great and said the problem isn't due to leukemia or my bone marrow transplant. I have a sneaky suspicion that my ovaries have seen their last day, but I'm just guessing. It could be anything.

She said it all with a very kind expression. I hope that means something good.