Ok, so most of you have probably heard my bad news by now, but there is a small update, so keep reading!

Friday, Jan 20, I had yet another CT scan of my chest which showed about 7 spots.  According the doc, in hindsight, he could see most of those spots in the scan from Jan, but couldn't be sure what they were. The good news is that they haven't grown a ton since Jan, and all are still very small - The biggest is about 5-6 mm (about 1/4") . But they are still growing, and my doctor thinks the time has come to begin looking into clinical trials that would treat this systemically, instead of playing whack-a-mole with the spots that keep popping up. 

So, the doc and I have been looking into clinical trials.  He has confirmed that there are none here in Pgh, or in Ohio that would be a good fit for me.  There might be one in Maryland that is an option, but I still don't have all of the details.  I do plan on heading to another system to get a second opinion, but I am not expecting them to say anything terribly different than I already have heard from all of my docs here. 

So, what happens if I don't get into a clinical trial this time around?  Not much.  We would keep up with the scans, and play that trusty game of whack-a-mole  on any spots that appear they might start causing symptoms due to their size or location. And we pray for a promising clinical trial to open up.  There is a chance that if things get bad, I can try traditional chemo, but there is no guarantee that it would help much, since my cancer is so stubborn against treatment. 

For now, I continue to feel fine - which is a big part of why all of this is so surreal.  I am going to keep doing everything I can to enjoy life, work hard, and stay on top of this.  And I might try to check a few things off my "Bucket-list." Anybody want to go hang-gliding?  :)

Highmark v. UPMC

Ok, so as if I didn't have enough to worry about, the battle between Highmark and UPMC has me seriously worried.  I wrote the letter below, but I don't know who to send it too, or even if, under civil service laws, I am allowed to send it to anyone. Anyway, what do you think?

To Whom It May Concern, 

Let me introduce myself. I am a 32 year old state-employee, and last year, I was diagnosed with head & neck cancer. I consider myself very lucky to work in a system where the support from my co-workers and management was overwhelming, I had plenty of sick leave, and health insurance covered nearly everything.  It took a while, but I found some doctors I really trust with my care. They happen to be at UPMC Cancer Centers and UPMC Eye & Ear.   

Despite getting the best of treatments, my cancer has since metastasized, and although I am not currently in treatment, I will require follow-up care for the rest of my life.  For now, I feel great and continue to work in the state system, and I would like to continue with the doctors who are familiar with my previous treatments and close to home.

Ironically, if I were seriously ill, to the point where I had gone on disability and was relying on Medicare and Social Security, I could continue to see my current doctors. However, as a state employee living in south-western Pennsylvania with a serious illness, the only real options for me are Highmark health plans. If UPMC and Highmark continue on their current paths, they will split ways next summer. At that time, it looks like I will lose access to my doctors unless UPMC and Highmark come to some sort of agreement.  I don’t know if the solution to the current impasse should come from legislation, the consciences of whoever is making the decisions for UPMC and Highmark, or if I should be pestering the PEBTF to offer a wider range of insurance options.  I don’t really care. I just want to keep my doctors.  

My oncologist assures me that if the split occurs, I can get my routine care at AGH and go to Cleveland for a top-notch research facility as needed. But Cleveland is 3 hours away, doesn’t have the doctors I know,  and I don’t want to waste the time I have driving to a city where I don’t know anyone.

I know my situation is not unique, there are thousands of people out there facing similar situations. Please don’t make us waste our days driving to great research facilities out of state when there is one so close to home. 

Lisa Moore

That is my rant for the evening. Thanks for tuning in!

A hard turn.

So, most of you know it's been a rough couple of days.  I had a scan on Thursday to follow-up with the treatment from last august, and see what else might be going on.  I got the results the same day from my doc. The good news is that the five spots that were treated are gone, leaving only cloudy looking spots on the CT.

The bad news  - two new spots on my lungs. They are small, but I had really hoped that this scan would be clear.   Since my type cancer is usually slow growing, and will sometimes just stop growing for no apparent reason my docs think the best approach for now is to wait 3 months and see what happens.  Honestly, I'm not sure what will happen if the next scans show more spots. There has been talk of doing more of the radiosurgery or trying some chemo.

One of the hard things about my type of cancer is that chemo doesn't work to keep it from coming back, which is why I haven't had any. Some people have had success with it keeping tumors from growing, but it is chemo and would likely have ugly side effects. 

So, I (and you, my friends & family) have to make the hard turn from thinking of this cancer as something that I will defeat to something that I will live with.   Victory will not be becoming cancer-free, but will instead be living my life as full as I can despite health issues. Lest you think you are getting rid of me that easily, people live many, many years with this type of cancer. And I plan to be one of them.

The best hope for a cure lies in new research, and since it is rare, large nonspecific charities like the american cancer society don't give much, if any, money toward this research.  If you would like to donate toward research that might help me, or others like me in the future, please consider accrf.org. 100% of donations will go directly to fund ACC research programs.

Round 2 - done!

So, I finished this round of radiation on Aug 15th.  I didn't think to update this then, just because it has been soooo easy! (I know, leave it to me to take the easy way out)  The worst is laying in the "right" position for extended periods of time, but I learned a few tricks to make that easier (relax, relax, relax, and bring some tunes) I've gotten some nasty heartburn (which is weird for me) but I have no idea if that is related or not.

Oh well I guess that's all for now.  I have a follow-up appt in a month (just to make sure I  don't have any weird side effects) and scan in about 2 months. guess that's it for now...

schedule change again

Ok... now it is ending Aug 15th. when they made up the schedule last time, they forgot that one of my spots gets 4 zappings instead of 3.

I can hardly believe that it's been a whole year since I was diagnosed.... it has really flown by. But, in other ways, it really feels like a lifetime ago.  So, tomorrow, help me celebrate - wish me a happy cancer-versary!

schedule change

Ok, they are changed my schedule again! Five days a week until Aug 11. ugh. It isn't bad, but an hour or more is a LOOOOONG time to lay absolutely still with your arms up over your head. After about 30 min, my one shoulder just starts to ache, and by the end, my hand was just shaking.

Oh well, what must be done must be done.

Anybody out there in cyber world want to drive me next week to give my sister a break? call or email!

radiation...again...

So, I start this afternoon. I still don't know for sure how many treatments there will be (I think 3 or 6), but everything I've read and heard says this should be way easier than the radiation I had before.  

I just wanted to take a minute to say thanks to you all (and all my family and friends). I shouldn't have been, but I was very surprised this week to have so many people offer to give me rides, or whatever I need over the next week. A friend sent me a video which sums it up nicely.

www.youtube.com/watch?v=mZE_8pMRH7Y&feature=related

Thanks!!!