Friday, October 30, 2009

The sucky gift

It sounds like an oxymoron, but cancer is the ultimate sucky gift. I've been mulling this in my head since Tuesday and a friend reinforced the thought in an email last night.

Yes, cancer sucks. Yes, I'm incredibly disappointed and angry it isn't all gone. Yes, I hate that I will continue to worry about it and may have to fight the good fight again (and again?). And it sucks that I feel I've let everyone, including myself, down by not coming out on top of this (yes, I know this is completely irrational, but I never claimed to be logical all the time).

So where does the gift part come in? It's not something I'd put on my Christmas list. Hey, how 'bout you give me a nice, big dose of cancer to help me figure things out? But it's like when you get that handmade, knitted sweater from grandma. You're incredibly disappointed it's not the cool electronic toy you wanted, but you smile sweetly and say thank you. But over time, you appreciate its warmth, its beauty and the obvious love she put into creating it just for you.

Cancer helps me put life into perspective and focus on the people, events and things that are really important. Don't get me wrong, I don't have it all figured out. In fact, it's a daily learning journey. But I do know I'm learning to let go of the little things, forgive, tell people I love them more, appreciate the beauty of nature, say no, stand up for myself, appreciate the small stuff, be kinder to myself, etc.

I've said it before, it's so easy to get caught up in the everyday busyness. In fact, I was already starting to do just that before I didn't get a clean bill of health on Tuesday. I let little, really insignificant matters bother me, was short with those who matter most and I focused on moving forward with the mundane, rather than planning with purpose. In other words, I wasn't incorporating some of my want to dos in with the have to dos.

Tuesday's news made me realize again, that I have to incorporate my dreams into everyday living today. So I'm mulling over what it is that I want to accomplish. I haven't quite figured that out yet.

And it reminded me to incorporate the little, but good, things into my day. Lots of hugs and I love yous, coffee with friends, prayer, a session with a social worker, a kind word to someone (or even myself), writing, contemplation, laughs, a computer game I enjoy, dessert, etc.

We all have to enjoy and appreciate the little and big things that make life worth living.

Cancer's gift is also a better understanding of myself. The disease halted the hamster wheel I was running on and gave me time to delve into my brain, heart and psyche. I know myself better now than ever before, which helps me understand what is really important to me.

So like grandma's sweater, thank you cancer for the warmth, beauty and love of life.

Tina

Thursday, October 29, 2009

What I need

I know yesterday's blog was a shocker for everyone. I was devastated I had to write it. I was on the cancer-free party bus, ready to shake it down with everyone that I licked the evil demon. Now I feel we're all dissappointed, left standing on the platform as the party bus pulls out.

Everyone seems to be processing the news since I received few responses yesterday. My inbox was eerily quiet. And I can imagine no one knows exactly what to say or do. So I'm going to try to help by telling you what I need.

I need a small dose of strong sympathy (hey this really sucks, let me give you a hug, keep fighting because those tests don't predict the future, let's drink a couple of bottles of wine together, etc.). Then I want to try to recapture my new normal.

I started that process yesterday and I have a plan in place. I lined up an appointment with a social worker to help me process the news and deal with the conflicting emotions swirling around in my head. I'm devastated, shocked, angry, hopeful, sad, energized, worried, lonely . . .

I also got my back-to-work plan almost in place. I told my rehab consultant I was ready to go back next week, thinking if I don't have to worry about the side effects of the clinical trial drug, then let's get the show on the road. But Noah has the flu (hopefully not N1H1) so we're waiting an extra week to ensure I'm healthy. On a side note, I'm wearing a pretty yellow mask as I care for him and the poor guy is quarrantined to the basement (that's where his bedroom is so don't start thinking dungeons).

At the suggestion of my rehab consultant, I've also got a personal trainer on standby for a couple of sessions to ensure I'm not going to hurt myself in my quest to get back in shape. I'm sure Theresa will work me hard and help me figure out how to be the best Tina I can be.

But I have to tell you, my quest to be thin has taken a back burner. My metabolism sucks. So to lose weight I have to watch every single morsel that passes my lips and cut out all the really yummy stuff. So I'm not going to deny myself just to see a particular number on the scale. I will try to eat well and exercise so I'm healthy. But I'm also going to enjoy the richness and satisfaction of food, drink and dessert.

I'm attempting to gain some sense of control with all this active planning since I have little control over what is going on in my body. So I'm going to try to let it go, place it in God's hands and carry on with life.

Please, please, please don't feel sorry for me. Sympathize with me and feel a twinge of sadness that the results aren't all we hoped they'd be. Then help me celebrate life with goodness, friendship, laughter and love. It's the best any of us can do in life anyway.

Tina

Wednesday, October 28, 2009

Curveball

Dr. W threw me a curveball yesterday - and I wasn't prepared for it. According to my CT results, my abdomen isn't clear and therefore I don't qualify for the Sorafinib study. What the results mean, we don't exactly know right now.

I was in shock when I heard the news. I was completely convinced everything was gone and was mentally preparing for the side effects from the clinical trial drug. Then I got scared (again) and for the first time, cried in a doctor's office (and in the van on the way home).

But I've had time to partially process the news and have come to realize it isn't necessarily bad. It's shocking and it could turn out to be bad (eventually - and hopefully a long time down the road).

So what did the CT scan say?

- There remains a few areas of peritoneal tumour. So the microscopic dust that the chemo should have eradicated may not be gone. I have to admit, this line in the report sucks. Come on, the chemo had to have done its job. There wasn't hardly anything left after surgery.

- There is a hypodensity along the dome of the right lobe of the liver. I had this growth before the surgery and it was much bigger then. I trust that if Dr. P found it suspicious, he would have removed it. So perhaps it's just some imperfection I have.

- There is a small cystic lesion along the vaginal vault measuring approximately 2.5 x 1.2 cm in size with punctate areas of calcification and residual tumour cannot be excluded. Okay, to me cyst means fluid-filled sac, not cancer. Maybe the CT folks are covering their butts to say residual tumour cannot be excluded. This must be something that formed because of the surgery.

- Spleen, pancrease and kidneys are normal. Yay! A side note mentioned I have gallstones (the least of my worries) and I have an umbilical hernia with small bowel within it. So maybe I popped an internal stitch during recovery and part of my small bowel eased into the hole. I guess if it gets to be a problem, we'll deal with it later.

The overall impression on my CT scan results is there has been significant improvement since the last one in April, when my cancer was diagnosed. No kidding!

When he gave me the news, Dr. W said these results are common and he's not alarmed. He said yes, I'm in remission and he doesn't recommend any treatment based on these results. He said it could be scar tissues, non-cancerous growths or cancer. We don't know.

So I'm going to have another CT scan in three months to see if the size of the growths has changed - smaller, bigger or the same. Apparently, doctors don't usually recommend more treatment until the ovarian cancer signs reappear. Of course, I didn't notice a lot of symptoms and explained that to Dr. W. He said if the ascities was my indicator, watch for that.

The good news (even though it's not a definitive marker) is my CA-125 is 10. Remember, below 35 is normal and at one point it was over 950. So that's positive.

Yes, Michael and I are alarmed by the news. Yes, I am going to go to counselling to figure out how to deal with this. But I realized, I can get on with a "normal" life much quicker now because I don't have to worry about the side effects of the clinical trial drug. I need to continue to live my life and not be paralyzed by the fear that it's coming back.

Most women don't get these CT scans after they're done treatment and continue on with rebuilding their lives. I know this information just because I wanted to be part of a clinical study. Maybe I need some hypnosis to make me forget so I can blindly carry on like every other ovarian cancer survivor.

Dr. W said 95 per cent of ovarian cancer survivors get the disease back. They treat it like a chronic disease and if it does come back, there are treatment options. And, the researchers are working every day to discover new and different ways of treating this disease. Apparently, just last week, researchers announced a breakthrough in the fight against ovarian cancer. Work harder I say!

So, my goal right now is to process this as best I can and move on. I need to live and enjoy each day and let tomorrow bring whatever it may. I'll deal with it then. It's the best I can do.

Tina

Tuesday, October 27, 2009

Fake it 'til I make it

"Catch the beam and shine it out even if you feel too dark to bathe in it. Before long you will acknowledge and accept your greatness, without apology." Kris Carr, Crazy Sexy Cancer Survivor.

Fake it 'til you make it. I've heard that phrase 100 times in my complicated, dance-step intensive BodyJam classes. When you don't know the steps or can't quite do them yet - fake it. Eventually, if you keep trying, you'll make it.

In other words, even if I don't feel strong, healthy, in control, confident and beautiful, act as if I am and my body will follow. I need to believe in and live that message right now - without apology. Especially as I embark on the Sorafinib clinical trial and attend my first BRCA positive support group today.

Carr says, "confidence and self-reliance come from a deep trust in yourself." I'm working on it. The trust I used to have in my body has been badly shaken. So I guess I'll fake it until I make it.

She admits she still hears that pesky little voice chirp, "You'll never get there, you will always be sick and you will die of cancer." But she scrambles those negative thoughts before they take root and focuses on believing she's healthy and strong. She acknowledges it takes courage to build confidence because "the only way to really do it is to put yourself out there and take risks."

So I need to get out there, start taking some risks again, believe in myself and my strength, and leave the negativity behind. At least if I start with me, I can face the rest of the crap that gets thrown my way. Besides, I can only change me. I'm responsible for my attitude adjustment.

As for the rest of the crap in my path, I spent the day at the hospital with family yesterday as my mom visited two doctors and had a procedure. At this point, there's lots of talk and little action, which is frustrating. We have speculation, but no answers. She does need at least one surgery and another test under general anaesthesia. I just wish the doctors could coordinate things and get moving. So at this point, we again wait and pray.

But in the meantime, I can't get stuck in the muck of negativity - for neither me nor my mom. It doesn't do anyone any good.

So I need to believe in myself (and God) and then project that to the world. Then maybe my thoughts will become reality.

In the words of Henry Ford, "Whether you think you can or you think you can't, you're right."

Tina

Monday, October 26, 2009

It's completely unfair

It's the start of a new week and hopefully I won't be as grumpy. I feel sorry for Michael since he gets the brunt of my bad moods. While I can speculate a couple of reasons, I can't put a my finger one reason why I was so down.

I'm still dealing with this feeling of limbo and the irrational fear those little specks of cancer have decided to unite, form a team and take over my abdomen again. Now that they're not being blasted by the toxic chemotherapy, I envision they're rising from their hiding places and plan to wreak havoc. With every little twinge, cramp and pang, I think cancer. Never mind they've been blasted to kingdom come.

I'll have reassurance tomorrow when I see Dr. W. He'll have the results of my ECG, CA-125 blood test and CT scan to confirm that it's all in my head.

I think the fear the cancer will return is common among survivors and along with that, the fear they'll have to fight it again - maybe not as successfully.

Another reason for my funk may be I'm finally thinking about the injustice of it all. I'm not a nasty, chain-smoking, scotch swilling, pork rink crunching, puppy kicking couch potato. Why did I get cancer. It's not fair. I worked out, I tried to eat right, I tried to be good to other people. Why did the bad karma of cancer decend on me?

Yes, I enjoy my daily Diet Coke, an unhealthy meal every now and then, and it's a fact that chocolate will always be a treasured part of my diet. But I was healthy and believe in the golden rule - treat others the way you want to be treated.

They (whoever they are) say God only gives you what you can handle. With Noah's bipolar and subsequent suspensions, Michael's ankle woes and job frustrations, my cancer battle and now my mom's health struggles, I'm ready to cry uncle. But I trust He has a reason for this.

I'm also afraid of my reaction to the Sorafinib since some of the side effects can be pretty debilitating. I'm particularly worried about the potential for my feet to develop little blisters around the toes, which will make walking, let alone exercising, a painful activity.

But I have to be optimistic as I start this clinical trial, believing it'll work and the side effects won't be too bad. I've been in contact with a woman who's been taking the drug for six months with amazing results. She's got ovarian, liver and lung cancer, and the drug significantly reduced the size of her tumours. So I have to at least give it a shot because it may prevent new tumours from taking root in me and it may help develop a breakthrough in the fight against cancer.

Sometimes I want to be selfish, pretend the cancer was never here and just carry on with life. As crazy as it sounds and despite all I've been through, it sometimes still feels surreal that I had cancer.

As I make my way through this week, perhaps I'll work through some of these mental roadblocks and my mood will improve.

Here's hoping,
Tina

Friday, October 23, 2009

Tina proclaimed thankful Friday

I feel better today. It could be because people reached out to say they care (thank you to those who did), because it's Friday or maybe I'm at the end of that low in my emotional cycle. Regardless of the reason, I'm thankful.

The bad news is some of the bone pain is back in my wrists and arms. My nurse warned me it could return periodically. I have to admit it's much easier to tolerate with a positive attitude - and a little Tylenol.

But as a result, I'm going to skip the workout I had planned for today. I'm listening to my body, even if my mind says go exercise and lose some of that weight.

In appreciation for the end of my down feelings, I'm declaring this thankful Friday. I know we Canadians just celebrated thanksgiving, but it's important to regularly remember the things we have rather than than focussing on what we want. So here goes my slightly quirky list for today:

1. I'm having lunch with a dear, caring friend today who picked up the phone yesterday to say, "Hey, what's going on? Can I help?"

2. My children were far more cooperative and less argumentative last night.

3. My mom finally has two doctor's appointments on Monday to try to figure out what's going on with her health. Maybe we'll get some answers so we can move forward.

4. My black pants fit (okay, so maybe none of the others do and but I'm thankful I can wear these).

5. I have a phone meeting with the rehab consultant today. Hopefully this afternoon, I'll have a better idea of when I'll return to work and therefore be able to plan my life.

6. It's pizza day at my kids' school and I don't have to pack lunches, which is a good thing since I don't have any lunch fixings in my house. :)

7. I've narrowed the list of Florida homes (and as a result, reduced that squeezy, stressful feeling).

8. God hasn't forgotten me and shows me signs of His goodness daily. Sometimes, I just have to open my eyes to them.

It's so easy to forget all the wonderful things in our lives when we focus on what's missing. So, on this Tina proclaimed Thankful Friday, take a minute and (once again) identify a thing or two for which you're thankful. Focus on the simpliest blessings (a good parking spot, discovering a misplaced shirt in the back of your closet, an extra hot coffee, a good haircut, a hug from your child, etc.) and be thankful.

In every life rain must fall, if only to it make us appreciate the daffodils it nutures when they bloom in the sun.

Happy Friday.
Tina

Thursday, October 22, 2009

Irrational and crazy

I've now gone from grumpy to downright irrational - and I don't know why. I get irritated at all the little things around me from the messy house, to the fact that all my kids want to do is play computer games, to small things Michael does, to the fact my hair isn't growing in fast enough. And all these irritations pile on top of one another, making me feel like I'm being squeezed, which makes me lash out and then sink into my self-contained pit of annoyance.

Even doing the Zumba class at the YMCA yesterday didn't help much because the instructor didn't cue and changed moves OFF BEAT! Grrrr. Sure, I felt good from the sweat and moving my muscles, but not from the class itself.

Am I depressed? I don't know. Have I spent far too much time by myself in my house? Maybe. Yet when I get irritated, all I want is to be by myself. Am I travelling in a circular pattern of craziness?

I guess this is part of the post traumatic stress disorder Kris Carr mentioned in Crazy Sexy Cancer Survivor. It's part of my post-treatment anxiety or depression. As she explains, "Cancer is a roller coaster: One minute you're up, the next you're plummeting to the ground."

She encourages cancer survivors to allow themselves three days to wallow in any one emotion and then move on. I'm now working on day four and I'm not sure what to do about it - cry, throw things, exercise, talk to someone, have coffee with a friend, run away from home? I don't know.

At this point, I feel like I'm a crazy, speeding train running off the track and ready to crash. I'll pump the breaks and hope they work.

The only thing I do know is that my family will have clean clothes because I'm doing laundry and trying to find a Florida rental home today (an exercise in stress, frustration and pressure). That's all I can promise today.

But hopefully by the time my family comes home, I won't be irrationally angry anymore and can be a better mom/wife.

Tina