Sunday, April 26, 2009

What can I do?

Last week I found out a friend of mine was diagnosed with cancer.

She's a co-worker of mine, but we're in totally different departments now, so I don't see her much. We occasionally jot notes to each other on Facebook. I do consider her a friend though in the fact that I enjoy spending time with her when I do, wish it was more often and would keep in touch with her even if we didn't work at the same company. My point is, we're not close close friends, but I do care about her and this news has been on my heart since I found out.

She was not the one who gave me her news. It was another co-worker.

I want so much to offer support to her, but I do not want to intrude uninvited on such a personal and undoubtedly devastating time in her life. I have always tried to NOT be the kind of person who says "I know how you feel..." but at the same time, I feel like I can at least maybe relate to some of what she is going through. The unknowing part. The where do I start - how do I start - to deal with this part. I think about how I wanted to find people who knew what I was going through and what I was going to go through to "interview". You know, like I remember really wanting to know what the "banana phone" looked like. I guess I just want to offer that up to her, if she is looking for that too.

The thing is, I know that my experience was mine. In so many ways I just don't really understand why mine was so different than what I have heard other's have been. It has been probably the biggest cause for the question "why". Not "why me?". Just "why" was mine so different. I don't understand. And I don't know if anything I would have to say would offer help or comfort to her.

I do know this. I believe it was more than my youth, my attitude, my support of family and friends, my faith, my humor...

As I have said - before I was diagnosed, I always thought being told you had cancer was the same as being told - your life is gonna suck from now until you die - and you're probably gonna die soon. My only experiences with cancer were all that. Pain, diagnosis, agony through treatment, loss of quality of life, and then - death. There was never any recovery. And on the one rare occasion I can remember that there was not - I was always waiting. It was not a morbid fascination or anything like that. It was just how I believed it would be. It was my life experience with cancer to that time. I was always asking, how is uncle Jerry? It never entered my mind that he could be "better". Living life. In my mind, he was always in a fragile state of being, at risk of being broken at any moment.

So, where am I going with this? Well, it's about stories. Real stories that made surviving and living REAL. I do attribute my own experience being a "good" one (comparatively speaking) to all of the above, but also to some dear friends who chose to share their stories with me when they learned of mine. Matthew. Heather. Sammy. Tracey. Nadine. Heller. I was in wonder with most of you when you told me your survivor tales. It wasn't just a matter of having hope (which, don't get me wrong, I have always had hope) but you made surviving be real in a way that numbers coming out of my doctor's mouth could not. You erased the myth that had occupied my mind ever since the word cancer had entered it. I see it in a whole different way now.

Hearing my friend's news broke my heart. But I feel like at the very least, I can offer her an "aura" of hope and positive energy and honest belief that she can add her story to the list of survivor stories I have.

Oh gosh. This is turning into rambling (but I think that's what this blog was created for :) What I wanted to end with was some unsolicited advise, knowing that these things will not work for everyone. Maybe they won't work for anyone else, but they are things that I found helpful in my own experience - and if they can help anyone else, well then, that would be pretty awesome too...
  • I was open with my diagnosis with friends and family - well, and pretty much anyone who cares to know. I tried to lean on them when they offered - and appreciated their company at each of my chemo appointments!
  • I blogged. I recently had my one year anniversary and I was happy to have a record of this time in my life. It makes me appreciate where I am now quite a lot.
  • I tried to "get ready", at least once a week. I found that if I felt like I looked as sick as I felt, then I felt worse! But if I got ready, I would actually feel better. This may be a given for lots of people - but when you have the opportunity to sleep til noon and hang out in jammies all day, sometimes you do! Lazy is as lazy does?
  • I looked for positive stories and resources and focused on those.
  • I tuned out the negative.
  • I listened to my body and rested when I needed to - but I also did "fun stuff" when I was up to it (and I did a lot of fun stuff!).
  • I laughed.
BTW, I sent an email to my friend letting her know that I heard of her news, how sorry I am, and that I am here if she needs anything. I know that she is surrounded by her family and close friends and lots of love.

You are in my thoughts and prayers J! - xox

Friday, April 3, 2009

12th Floor - Oncology... did ya miss me?

I had my 6 month (from end of chemo) check-up today.

While I was waiting, I saw the head nurse Julie head over to the elevators. I had wondered if she was there because I wanted to stop in and say 'hi' to her, so I went over and asked her if she remembered me. She had to take a look, but then said "Oh yeah! Your hair is longer and you have glasses! You look great, how are you..." and gave me a big hug. Her elevator came and went and she stayed and talked to me for a bit... saying it was good to see me back and doing so well. It's not always the case with some of her patients. I could only imagine how hard that would be. She gave me another hug before she said goodbye.

I don't miss chemo, but it was very strange being there all the time for six months and then all of a sudden - not. I felt like I was surrounded by some very compassionate people who really cared about me, and it kind of didn't make sense to just remove myself from that. I know, that probably doesn't make sense as I write it... in my head it does.

Dr Azar said I am doing great and that my test results were all good. The biopsy from the mass found in my exam came out benign. CT scan, clear. Oh yeah, I forgot to do my bloodwork lab. Oops. I did stop by and do that before I left and she'll let me know if there is anything to be concerned about.

I asked her a couple of questions -
  • What would be a call for gene testing? Two out of my three brothers had polyps during their colonoscopies and I think my sister did too. She is noting it and I guess there is a wait but I might be called in July or August to fill out paperwork for that to see if I qualify (not sure if that's the right word) for the testing.
  • Since I was told that I would be considered "cured" if the cancer doesn't metastasize in five years, is that from my surgery date or my end of chemo date? She asked me "Why, are you planning a party?" "Heck Yeah!!" But really, I just want to know. She said that it would be from my surgery date. And it's likely that if it will, it will probably happen within three years. It's very unlikely that it would happen after 5 years. The thing is, (she told me very frankly) - it could happen. I could also get "new" cancer.
  • What would be the word to describe me in terms of cancer? She said, "I really hate to use the term cancer-free. You're never going to be able to donate blood. You're never going to be able to stop having colonoscopies. This is always something you are going to have to keep in check. You're in remission. We hope we killed all of those bad cells with the chemo, that's why we were so aggressive, but we just don't know yet. And if you have that mindset (cancer-free/cured), and it does metastasize - you'll be pretty pissed thinking you were cancer-free." Honestly, I can deal with the term remission. And honestly, I don't care what you call me right now, if it comes back - I think I'll be pissed.
  • Will I ever have a PET scan? I have heard this term in regard to cancer a lot and have also been asked. My prep for this appointment was a colonoscopy and a CT Scan. To tell you the truth, I don't know the difference between a CT, a PET or an MRI. I trust that Dr. Azar is recommending the tests that she thinks will best suit my health needs. She said that she doesn't think that a PET scan is necessarily better, but it gets a lot of talk up in cancer circles. Each scan will detect masses, which is the point. As far as we know, all of the cancer was removed during surgery and since there was no evidence of it affecting any other organs, and there was nothing on my scan from last month - there is no change.... no growth. So as of right now, no PET scans. And the clinical trial I am on will cover the cost of my CT scans every 6 months.
What else? She told me that I should have my next CT in 6 months for my next checkup. And she assured me that I can call her or Tracey (my clinical trial nurse) anytime if I had any questions. She was happy with how I'm doing so far. So am I.