AttackACC walk

Friends,                                                                      

You probably already know that the past two years were pretty rough for me, and I am so grateful to all of you who offered words of encouragement, or asked if there was some way to help me through treatments. All too often, I turned down offers of help, because I had everything I needed and plenty of helpers. But, lucky for you, I have a new, easy way for you to help.  This September, I plan to walk in the “Attack ACC” fun walk near Chicago, IL. The funds raised go to the University of Virginia Comprehensive Cancer Center, one of the few centers in the US studying Adenoid Cystic Carcinoma - they even have a current clinical trial.  (See attackacc.org for more info on the walk and accrf.org for more info on ACC. )

My story starts many years ago.   In high school, I had some pain near my jaw, but I didn’t think too much of it. Over the years, I asked several doctors and dentists about it, but no one seemed worried, diagnosing “TMJ” or an even more generic “probably nothing to be concerned about.” Being an invincible teen and young adult, I assumed nothing bad could ever happen to me. But, the pain and lump just in front of my ear grew. Looking back at some pictures now, I see the lump and think, “How could my doctors or I have thought that was nothing to be concerned about?” When I finally asked a new doctor about it in June of 2010, she quickly sent me to an ENT (Ear, Nose, & Throat specialist).  A flurry of tests and doctor’s appointments later, I was going under the knife to remove the tumor on my parotid (large saliva gland).  The surgery went smoothly, but brought bad news; the tumor was a kind of cancer called “Adenoid Cystic Carcinoma.”  I survived six LONG weeks of radiation to tumor area.  I did not enjoy radiation, but if you need a weight loss plan, it works great!  (Just kidding, of course!)

Being a scientist by nature, I started researching.  What I found did not encourage me.  Adenoid Cystic Carcinoma is a rare cancer, with about 1000 new diagnoses every year, so not much money goes to research.  The larger cancer organizations, like the American Cancer Society, don’t give any money to Adenoid Cystic Carcinoma research.  No one knows what causes it, why it grows very slowly in some people but is progressive in others, or a good way to treat it if it reoccurs or metastasizes.

This last point is especially close to my heart, both literally and figuratively.  My regular scans show that the cancer has spread to my lungs.  I participated in a radiation-based clinical trial that was not terribly successful at slowing the appearance of new little cancer spots. The good news is that they aren’t affecting me physically, yet.  For now, all of my doctors advise that I live my life to the fullest until I start having symptoms, and then to try more treatments or clinical trials, so that is what I am doing.  There are precious few clinical trials out there, but more research is being done every day, and I try to remain cautiously hopeful.

My research also led me to several websites where I found hundreds of us out there with Adenoid Cystic Carcinoma – and more than a few who have been willing to encourage me as I go along on my path.  So, if you have an extra couple bucks, I’ll make sure they go to a good cause with the AttackACC[1].  The research you fund could help me and my new friends fight this lousy disease.

                                Thanks for considering it!   

                                Lisa Moore

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[1] All donations are tax deductible.  If you’d like to donate directly, you can donate on www.attackacc.org (you can “pledge” for my walk on the website by clicking on the “donation/pledge” tab and selecting “Pledge Adenoid Cystic Carcinoma Survivor”).

oh and,

I should also add, for those of you who haven't heard - None of the clinical trials really worked out.  I am just too healthy.  Really, they have a minimum requirement for tumor size, and I don't meet it.  So, since I am not about to complain having tumors that are too small, I am trying to live my life and not worry about it.  If the clinical trials are good, they will still be there when I need them. 

March 12. aarrrrgggg!

So, today's post is going to be long, whiny, and frustrated.  But, it will reflect my mood, so here goes.

After my last appointment, at my doc's recommendation, I decided to try and get a second opinion from another respected research hospital (we'll call them RRH for the time being).  I didn't think it would be terribly hard. Boy, was I wrong.

Jan 24th - I started by calling RRH.  They sent me some paperwork. Which I thought I'd fill out and returned (including my insurance information), get an appointment for a second opinion, and the rest would be history. For the record, I filled it out and returned it the same day.

Jan 25 to Feb 26th - I play phone tag with Missy, an oncology appointment specialist. She asks for paperwork, I get it sent to her, she claims it is the wrong stuff. repeat this several times.  Keep in mind that she has my insurance info since Jan 25th.  Eventually, she just stops returning my phone calls and emails. 

Feb 26th - I email my radiation oncologist to ask for his help getting an appointment at RRH. He returns the email within 24 hrs saying "No problem."

March 5th - I get a call from Linda, a different oncology appointment specialist from RRH. She has none of the paper work that I sent Missy, and she wants a completely different set, but she is very specific and tells me how to get all of the info I need, so I'm ok with that.  I get an appointment set up with an oncologist for March 16th. I make roughly half a million phone calls, and fill out at least a quarter million forms, and return them.  This process takes hours, and at least one hospital employee is unacceptably rude! But I got it all done, and although I was nervous about what this new doc would say, I was hopeful. 

March 9th - (as you read this, keep in mind that RRH has had my insurance info since Jan 24th) Linda calls me and informs me that RRH doesn't take my insurance, and if I keep the appointment, I'll have to pay $$$$.  Upset, I cancel the appointment.  After thinking about it for a while, I decide to call up my insurance and see what the problem is, but it will have to wait until after the weekend, since it seems all these hospital types like calling with bad news on Friday afternoons. 

March 12th (today)  -  good enough to go minute by minute:
     9:30 I call the insurance company
     9:32 I say the wrong thing to the voice recognition system and can't figure out how to go up a level in the menu. Hang up.
     9:33 swear, take a deep breath and try again.
     9:34 call insurance company again. go through voice recognition system again.
     9:36 talk to a live human being! (known as Chris) explain situation.
     9:37 Chris puts me on hold
     9:41 Chris says there is no way around it. I say "are you sure" and ask more questions. Somewhere in the  course of this conversation, Chris adds this gem: "I've never dealt with anything like this before." sigh.
     9:42 Chris puts me on hold again.
     9:45 Chris comes back and says, well, there is this one thing that might work. Chris gives me a list of hoops. (in a nice change they are for my PCP to jump through.)
     9:47 hang up.
     9:48 call PCP number listed on insurance card to ask about hoops. Get told this is the main office and not the doctor's office. get correct phone number
     9:50 call PCP office at the new number. listen to all options. decide to pick option 3 (mostly at random).  explain hoops to person who picks up. they say "ummm, let me check." they put me on hold.
     9:52 they come back and have a list of hoops for me to jump through before they will jump through their hoops. I need to call Linda at RRH and have them jump through some hoops.
     9:54 call Linda to ask about hoops. No answer. left voicemail. 
     10:27 Linda calls back. Not willing to jump through hoops. (specifically, even if I get my insurance to cover my appointment, they will not accept insurance money, or even talk to my insurance company, and I will be responsible for full payment at time of service.)
     10:28. Kick ottoman. Foot hurts.

I am planning to switch my insurance when I can (as long as it will still cover treatments for this stupid cancer) as soon as I can, but that will be January at the earliest.  For now, there are no other research hospitals (Except UPMC) that are covered by my insurance, so I'm going to hold off on the second opinion for now. If and when I finally get that second opinion, it will NOT be RRH. They have annoyed me for the last time!

For the record, I'm not giving up, I'm just postponing for now. I have better things to focus on than trying to fight with insurance and hospitals. It just isn't worth the aggravation. To give you an idea how I am handling this, Friday after work, I paid a bunch of bills. When I got my mail today, they were all there. I forgot to put stamps on all of them!


Following the example of generations of women in my family, when things get tough, I bake. Anybody want some brownies?

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...