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?

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

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...

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.

How quickly we forget...

When I started this blog I made a commitment that I would keep writing. That has been hard for me. I no longer have all the "free time" I did when I was in treatment. I certainly don't wish for it back, but my posts have become shorter and longer apart. I had a cancer checkup in February and everything was fine. Today I went in for a mammogram. This was as a follow-up to the mammogram I had in November. It was a quick trip today and I was able to get my pictures taken and reviewed almost immediately. Luckily things were "probably benign" so I don't have to go back in for another 6 months. Yippee for what it's worth.

I am also due for my next cat scan. I am actually a few days delinquent in scheduling it. I had contemplated having my mammogram and cat scan on the same day; but realized that you just shouldn't try to pack that much fun into a Wednesday.  There's another reason I let things slide a bit. I am writing this while sitting in a hospital with my aunt. She's not doing well. Not well at all. So I am going to spend the week worrying about her. I'll get to my CAT scan soon enough. And if you're really worried I promise I will call tomorrow and get the next available reasonable appointment.

It slices it dices

My dad had a very odd sense of humor. One of the most memorable “funny” things he would do is ask people if they wanted to compare scars. Having endured a number of surgeries including appendix, gallbladder, and his knee, he quite an assortment all over the place. Since I had my appendix removed when I was in high school I had a formidable scar of my own to present and it never occurred to me that this wasn’t funny to most people. Since then, I’ve had so many other surgeries that I actually forget some when I’m counting them up. I think I could finally take him on and win! And that’s not even due to the most recent surgery I had, which was on Wednesday before Thanksgiving. In my last post I wrote of the impending joy of having my port removed, but it was truly an emotionally awesome event. It wasn’t without pain or trauma, but totally worth it all said and done. I considered posting a picture of the extracted port and the surgery site, but the gross factor isn’t worth it for people who are a bit squeamish (perhaps a subtle indication that dad’s jokes are only funny to a select group of people with a sick sense of humor – me included).

So the surgery was kind of cool. I went to my oncologist’s office (I know – weird that it wasn’t at the hospital). I donned a sexy pastel flowered robe that closes in the back, some cool blue booties, a matching fashionable hair net, and wrapped myself in the toasty but blankets that are so familiar to medical settings anticipating my oncologist’s arrival.

I got to be awake for the whole thing and they numbed up the area and then cut cut cut away. He had to stop a few times to numb up more of the area – yeah – when they cut places that aren’t totally numb it kind of hurts! I think I was so excited that I could have endured the whole surgery without anesthetic. We kept up a nice constant chatter (probably to keep me distracted) and he was kind enough at one point to reassure me that things were going fine… cause when you’re lying powerless on a table while someone’s hacking away at you, the time seems to tick by quite slowly and you start to wonder what the problem is. Finally he got a good grip on the thing, yanked it out, sewed me up, washed his hands and promptly checked his phone for messages. That’s the kind of efficiency you like to see!

All in all a good way to spend the morning and I headed home with the hopes of spending most of the day lying on the couch playing video games enjoying a well-earned vacation day. I shouldn’t admit that I finished drafting one performance appraisal in this state – but I felt it needed to be done. I also had a tiny bit of a scare that evening as I still had some bleeding, but a change of the bandage and another hour of video games with a 4 pound bag of sugar on my chest putting constant pressure on the site quickly resolved the issue. Now just a few more weeks of ouchiness and I should be right as rain.

Good, better, best

I have three pieces of news to share. For once they’re all pretty positive. I hate to put any sort of caveat on good news, but the truth of the matter is this is that most of my updates are just data points along the way rather than a definitive “all clear”.

Nevertheless, the first piece of news is that I went in for a follow-up mammogram today (Wednesday 11/16/2011). It took a long time, even though I had checked in bright and early for an 8:45 appointment they didn’t get to me until a after 9:00. Then I had the joy of going back to the staging room to wait for the radiologist dr. to read the images. They came back for me and told me they wanted to do an ultrasound too. I tried very hard to get a grip on my emotions as I hopped up on the table and lay waiting for the radiologist to come in. Those two or three minutes when you’re just sitting by yourself are terrible torture. Fortunately it was really only a few minutes before the dr. showed up. I told him up front that I wanted full disclosure about what he was seeing during the exam so that I would have as much information as I could get out of the visit. He spent about 5 minutes checking things from a bunch of different angles and ultimately concluded that he couldn’t see anything worth being worried about. Being overly cautious he suggested a follow-up in 6 months just to double-check things, but reassured me that there’s nothing concerning.

The second piece of news is that last Friday (11/11/11) I had my 1 year post-cancer-treatment follow up. This included a full CAT scan. That came back completely fine. Yup it’s exciting to be considered “cancer free” and “in remission” for a full year. That’s great news since 60% of the cases recur within one year. That still means we have a ways to go – as my doctor says my odds didn’t change, we just have more data. But I will take these small victories any way I can get them – and what a fantastic date to commemorate the occasion.

Which brings me to my last piece of news. It was recommended to me that I keep my power port in until I passed my 1-year mark. I also decided to wait just a few more days to get past the mammogram. Walking out of the screening this morning my first call was to my oncologist’s office to have them schedule the port removal. It has been such a ugly, annoying, horrific, and painful thing and a terribly depressing reminder of the potential risk of recurrence. There are so many things I can’t do without it getting in the way. When the kids try to climb over me I often get an elbow jabbed in it, or a head-butt when I bend over to help them put on pants because they’re jumping around. I can’t wear my laptop-bag cross body on the left side without the strap rubbing and hitting it. Heck, I can’t even wear a seatbelt comfortably. So I am overjoyed that I get the darn thing out. That is scheduled for the next available appointment, which is Wednesday 11/23 at 9 AM. I am so so so excited! And I’m already plotting a tattoo to go around the incision site when this whole thing is behind me.