Wednesday, June 3, 2015

time keeps on slipping.... into the future

It has been 4 1/2 years. Many people who signed up to follow my blog will probably have forgotten that they even subscribed when they get the email telling them there's a new post. But I'm still here. No signs of any cancer and I'm so close to hitting the magical 5 year mark. That special milestone that is supposed to make everyone breathe a sigh of relief and put the whole thing behind us. Finally we can then forget that it ever happened. Some have already have forgotten. Sometimes the memory is triggered and someone will say "oh yea, that's right you *had* cancer". Distant past for them already. For others who don't see me as often it's the first thing they ask. The "How *are* you?" with a worried look and a bit too much emphasis in the words. And then I question if I am the one reading into things. But it's good to know people are genuine in their inquiry. This is better than the passing "how's it going" that fills most people's exchanges. But we're almost there. Then the "How are yous" can revert to a genuine inquiry, but hopefully the worried hesitant tone will be replaced with an enthusiasm for a new topic.

Speaking of putting it all behind me, I still plan to cut off all my hair. I have been growing it for a few years now. I haven't planned far enough in advance to know exactly what the details will be, but plan for something later this year. Sometime after my October check-up...

Thursday, November 20, 2014

Do they know it's been 4 years?

There are a lot of people who have entered my life in the last four years. It's actually quite astounding to me how many people I know who I consider good friends - or at the very least people I like and want to hang out with. Yet I am surprised again and again how easy it is to not think about what I've been through. I've put it so far behind me that I sometimes find it very odd to tell anyone about my cancer. I still don't want to admit that it impacts me. I don't like the feeling that it has power over me. So I don't often bring it up - and more likely, when it does become a topic of conversation I feel like I need to apologize, or hastily tell people that it was / is "no big deal". I don't want their sympathy, but I feel like a fraud to dismiss how my world was thrown head-over-heels into chaos. I feel like a liar to say "don't worry about it, I'm fine." I don't actually know that I'm fine, but I'm repeating the lie I tell to myself. And yes, this is that time of year when I go in for another checkup. So if you're one of the people who still gets the automated emails with my blog updates then you can expect an update shortly about how year-4 came and went. And I can lie to myself for another year until I hit the big 5 - and then maybe I'll start believing the lie - because the sad part is that you're never actually in the clear...

Monday, June 23, 2014

Almost there...

About a year ago I started a post called "1/2 way there". I don't know why I never finished it enough to hit the publish button. Maybe it was a busy day and I got distracted doing something else. I don't know that I enjoyed the distraction any better. So instead the posts have languished. I have been busy being a dutiful mom, loving wife, good employee, engaged citizen, and detail oriented PTA treasurer. I guess writing a blog that most people don't follow anymore didn't seem like the top priority. But every once in a while my mind wanders to those women whose blogs I came across when I was in the midst of my own treatment. I want so desperately for them to be okay. And sometimes I try to search for them. But that was years ago and I didn't bookmark them.  Rather I have transient images burned into my brain of women with no hair, going through something so tangibly real to me. And so I promised myself that I would not drop off the blogosphere forever. I would finish my story for good or ill. And fortunately, there is no ill in my life right now. I've been following my check-up plans. I am now on the 6-month rotation and have hit the 3.5 years no-news-is-good-news point. Not *the* major milestone that will come at 5 years, but damn it if it's not great news.  I am pleased as punch that I have nothing to write about. If it weren't for this stupid summer cold I would say I'm perfectly healthy.  And so with that I will sign off - probably until November, because then we'll be at 4 years post-treatment.

Monday, March 18, 2013

Looking ahead


At the start of the calendar year I contemplated a lot of different options for a new-years resolution. The usual hit the top of my list (eat healthier, work out more). But that seems so cliche and although this blog is called anticreativity I didn't want to be completely predictable. Then one morning I saw on facebook that one of my running buddies had cut her hair and donated it for kids who lost their hair to cancer. I had considered this many years ago, but I have a hard time leaving my hair alone. It's a source of empowerment for me. When things are chaotic in my life it's one thing I can quickly change about myself. Having a bad day? Go blond. Too much stress? Now you're a redhead. That's not to say that every change of my hair style or color was driven by some negative external factor, but it's a safe bet if something big is going on my chameleon-like hair will show it.

When I was diagnosed with cancer I was in the process of growing my hair. I had cut it short about a year prior and it was time for a change. Then I found out I was going to loose it all. But like a phoenix rising one the best nights of my life was when I had a super supportive group of friends rally around me to shave it off. A night that that could have been traumatic and dis-empowering made me feel special and gorgeous. If you haven't already seen the post - or just want to re-read it (http://anticreativity.blogspot.com/2010/04/posse-goes-to-beauty-school.html)  Even with my hair gone - or perhaps even because of it I felt smokin' hot. Doesn't hurt that Todd found it appealing as well.  But then it fell out for real and with it went my empowerment. When we shaved my head we used clippers and so there was some stubble. Two weeks later I was really going bald. And that was a look that I didn't love so much. Even though I would go bald in my personal life I was still deeply self-conscious about how I would be viewed professionally with a bald head. During my treatment I tried so hard to be normal and strong that I didn't want anyone at work to pity me. I wanted to be a bad-ass. Being bald made it very hard to hide what I was going through and made me feel vulnerable. Around friends it didn't matter, they would love me no matter what. But would clients? Would co-workers? How would strangers on the street react? So I stuck to wigs, then I switched to scarves. I was not really very upset about it (except for the fact that by the end of it I was down to two or three eye-lashes and sparse brows), but certainly didn't revel in it.

I still remember the day that one of my co-workers and I were chatting and the topic of my hair came up. It had just started to come back in and so I pulled my scarf off, feeling very exposed; hesitantly waiting for approval. It came and it was a huge sigh of relief.  Part of my identity had come back. I no longer had to hide at work.

So let me get back to how this relates to a new-years resolution... I decided to cut my hair off and donate it. But right now it's too short to be useful for a donation. And it has some color-treatment. So I need to grow it. For a long time. How long? Glad you asked. See in about 32 months I will be 5 years cancer-free. So when I go in for my 5-year check up I should have about 16 inches of healthy non-color treated hair that I can cut off. And it will nicely coincide with a time when I'll be ready to make a big change. The 5 year mark is when I get to breathe a sigh of relief and put all of the cancer worries behind me. If it doesn't come back by then it's supposed to F@$& off forever.

Obviously there's plenty of time to plan, but does anyone want to grow their hair with me?

Tuesday, October 16, 2012

all's well that ends well?

Yesterday I went to follow up on the nonocclusive thrombus (and by the way - doesn't thrombus sound like the name of the brooms from Harry Potter?). According to the ultrasound technician I have excellent blood flow - and in fact she said: "If everyone's veins were this great it would make my day" (yes, she said I could quote her). So I guess I'm still perfect on the inside as far as any machines can tell. I am not sure how soon it will sink in that I'm over a big hump. Getting the "all clear" for cancer at the 2-year mark was a bit muddled with the news of the thrombus - you know, the one that wasn't even there.

Also, the irony was not lost on me that I am one of the team captains for Deloitte's Heart Walk. As I was sitting in the waiting room yesterday to get my ultrasound, I missed an update call for team leads before the walk this weekend. I was weighing the importance getting donations to help fund technology and education to do stroke and heart disease research as I was waiting to go into a room where I was examined by an Intern using said equipment.  The really funny part is that when I was asked to take on the heart walk role I didn't really feel like it was "my cause". Sure I knew people who had been affected; but I didn't have a deep personal need to raise money.  In a matter of a few weeks that all changed as I spent this whole weekend stressing that I could have a blood clot that would lodge itself in some critical place in my body and kill me. Darn it.

So - even though I had no intention of trying hard to raise money... if you want to donate to the Heart Walk that I'm doing this weekend you can:

http://pugetsoundheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1001672&lis=1&kntae1001672=8D5D3E0AD91A4948971A565DBF2E6168&supId=49265494

Monday, October 15, 2012

can't we just move on?

It's been two years and a few days since my last radiation treatment.  It feels like both a blink of an eye and eons at the same time. I have made many new friends in the last two years. People who never knew me B.C. and many who probably don't even know about it.

I mentioned a while back that my insurance company had denied my CAT scan at 18 months post treatment.  About a week ago I went back to the doctor and we discussed how I have been feeling and went through a very detailed review of any possible symptoms. Turns out that seems to have done the trick because the insurance company quickly pre-approved a CAT scan. I went in for the scan on Friday Oct 12th. I then had to wait, and wait, and wait. I called the doctor's office around 1pm - because by then they were supposed to have received a copy of the report from the scan. There was good news and bad news. OF  COURSE there was good news and bad news. The good news is that there is NO SIGN OF CANCER! WOOO-HOOO!

The bad news is that there is a little something that concerns them... A nonocclusive thrombus at the confluence of the left subclavian and internal jugular veins. Yeah - and if you actually know what that means and what I should do about it, please tell me. Although I'm not convinced that it's actually anything to worry about yet. I am going to get an ultrasound later this afternoon. More to come...

Thursday, September 13, 2012

Our doctor knows more than your doctor


So you're probably wondering why I haven't posted about the results of my last CAT scan, right? Since my last post was in May and I was already a few days behind getting it scheduled it is logical to assume I have already had my scan and that all things were fine. This is assumed because I would have posted otherwise, right? Well enter stage left an insurance company. Not an EVIL insurance company. Just your regular old FOR-PROFIT insurance company. During my treatment I was pretty happy with my medical insurance company. I know I joyfully challenged my disability insurance each time they closed or rejected a claim; but my health care coverage was pretty easy to deal with.

Now that I'm due for "routine monitoring" THEY disagree with my doctor's belief that I should have a CAT scan. THEY think that I should have new symptoms before I get a scan. THEY are jerks. Up to 70% of patients with my facts and circumstances will relapse - and the majority of recurrences happen within 2 years of diagnosis.  Sure most of those probably had some severe symptom. But that's what alternatively enrages me and has caused me to be somewhat of an Ostrich with my head in the sand. I didn't have any symptoms before the cancer was detected. You know, it was detected at stage 4, had spread to my lymph nodes, and I had a tumor the size of a walnut on my ovary. I didn't have any discomfort, no pain in my bones, no bleeding, and I was running 20-ish miles a week.

It seems pretty simple to me that this is the most critical time to be vigilant with surveillance. It's a shame that my insurance company disagrees.