Tuesday, December 18, 2012
Merry Christmas!
I don't talk about religion much. Particularly since cancer, I know I have more questions than answers, and I know that a lot of my religious opinions are not the majority view. (This is your fair warning: I'm no theologian and if you want to avoid religion entirely, leave now!) But, as the Thanksgiving and Christmas Season started this year, it was really hard to watch the world celebrate giving thanks and being merry when I am not feeling particularly thankful or joyful. Living with cancer is hard, and it isn't made easier when the doctors continue to say things like "it's growing, but I don't think we want to treat it yet" and "live your life now." It is just difficult, even though I am not currently having any treatment. Even at the best of times, cancer isn't far from my mind. It just made my mood kind of dark, especially when contrasted with the upbeat renditions of Rudolph the Red-Nosed Reindeer and Frosty the Snowman coming from every radio. I wasn't sure when or where the light would come from. I have a sneaking suspicion that I am not the only one who occasionally wishes their mood better was more joyful, or wished the pre-Christmas season was a little less glaringly loud and cheerful.
I was surprised to see some (not all) of this mindset reflected in some church celebrations as well. You see, I have been told over and over again in the past few weeks that this isn't Christmas yet, this is Advent, and Advent is primarily a season of waiting; waiting in the darkness for light to come. This season before Christmas is about a teenager who found out she was pregnant, and her fiance wasn't the father. Advent is about a man so hesitant to believe that his dream of having a son will come true, that he is struck dumb for months. If these people didn't know about fear and dark days, I don't know who does! Even in the old yule festival, this season is about a celebration of light on the darkest, coldest days of the year. I think this year, Advent is about how even on a dark day, the light comes from expected and unexpected places; seeing the smiles on my nieces and nephews faces, getting a hug from my gram, opening my mailbox and finding more than bills and junk, or getting an email from a friend. Advent is about finding joy, hope, and peace during the waiting, and, just maybe, finding that the darkness makes the light look a little brighter.
- I read once somewhere - The light shines in the darkness, and the darkness has not overcome it.
I wish you and your family a Christmas full of light and joy, and New Year full of hope and peace.
Saturday, August 4, 2012
Two years
Tomorrow marks exactly two years that I have been dealing with this stupid, stupid cancer. It has been quite a ride hasn't it? So, I'm going to share a few of things that have stuck out to me about this journey.
People (including myself) have lot of different reactions to my story. This first one is usually disbelief - "but you look so healthy!" Right after diagnosis, I spent a lot of time thinking "this can't be happening" or "I don't feel like I have cancer." Often, I still don't feel like I have cancer - and always wish I didn't have it.
Then comes the fear - I see this in myself of course, and the people who sympathize with me saying "you must be so scared." But I also see it in the people who insist "you're going to be fine!" My doctor's can't say this, and I know it isn't true. So, the real reason you are telling me that I'll be fine is to make the cancer less scary somehow. I've come to realization that it is ok to be scared - cancer is terrifying. I just can't let the fear control me.
There's anger and sadness, too, of course. I'm not sure why it has stuck with me, but right when she found out I had lung mets, one of the nurses I see on a regular basis said, "It makes me so angry that you have to deal with this." And she meant it. I still think that was one of the kindest things someone has said to me when I had bad news to share. It's ok to be angry and sad, too.
It hasn't all been negative. At one of my very low points, while I was waiting for radiation to star, I went to church and sat in one of the back pews. I managed to make it through the service without crying, but it was close, and I really just wanted to leave quickly through the back door. Maybe I could make it to my car before the tears came. But, the minute the service was over, the elderly gentleman in front of me turned and asked, "How was your week, dear?"
At that point I didn't even have the strength to lie to this nice old man. "Lousy."
I think he saw the tears in my eyes, or the pain in my face, because he took one of my hands in both of his, and patted it gently. Looking me in the eyes, he said "Life will get good again."
He had no idea what was going on with me, but he had exactly the right words. "Life will get good again." At that moment, there was nothing I needed to hear more. I still don't know which of the little, white-haired men at my church held my hand that day. It doesn't matter; that day he was an angel.
And so, two years now, I have been dealing with this. I sit here, knowing that the scan I had yesterday might bring good or bad news. (I should hear on Monday.) I am all of these things: unwilling to believe this is happening to me, angry, sad, scared. And I am just tired of thinking about cancer. But I know, too, that life IS good. I have family and friends that I love, a good job, and there is a rabbit sunning himself outside my back window. I can enjoy things big and small, and I will, because, even though I know the future probably holds unpleasant things, life is good again.
People (including myself) have lot of different reactions to my story. This first one is usually disbelief - "but you look so healthy!" Right after diagnosis, I spent a lot of time thinking "this can't be happening" or "I don't feel like I have cancer." Often, I still don't feel like I have cancer - and always wish I didn't have it.
Then comes the fear - I see this in myself of course, and the people who sympathize with me saying "you must be so scared." But I also see it in the people who insist "you're going to be fine!" My doctor's can't say this, and I know it isn't true. So, the real reason you are telling me that I'll be fine is to make the cancer less scary somehow. I've come to realization that it is ok to be scared - cancer is terrifying. I just can't let the fear control me.
There's anger and sadness, too, of course. I'm not sure why it has stuck with me, but right when she found out I had lung mets, one of the nurses I see on a regular basis said, "It makes me so angry that you have to deal with this." And she meant it. I still think that was one of the kindest things someone has said to me when I had bad news to share. It's ok to be angry and sad, too.
It hasn't all been negative. At one of my very low points, while I was waiting for radiation to star, I went to church and sat in one of the back pews. I managed to make it through the service without crying, but it was close, and I really just wanted to leave quickly through the back door. Maybe I could make it to my car before the tears came. But, the minute the service was over, the elderly gentleman in front of me turned and asked, "How was your week, dear?"
At that point I didn't even have the strength to lie to this nice old man. "Lousy."
I think he saw the tears in my eyes, or the pain in my face, because he took one of my hands in both of his, and patted it gently. Looking me in the eyes, he said "Life will get good again."
He had no idea what was going on with me, but he had exactly the right words. "Life will get good again." At that moment, there was nothing I needed to hear more. I still don't know which of the little, white-haired men at my church held my hand that day. It doesn't matter; that day he was an angel.
And so, two years now, I have been dealing with this. I sit here, knowing that the scan I had yesterday might bring good or bad news. (I should hear on Monday.) I am all of these things: unwilling to believe this is happening to me, angry, sad, scared. And I am just tired of thinking about cancer. But I know, too, that life IS good. I have family and friends that I love, a good job, and there is a rabbit sunning himself outside my back window. I can enjoy things big and small, and I will, because, even though I know the future probably holds unpleasant things, life is good again.
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
[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”).
Monday, March 12, 2012
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?
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?
Sunday, January 29, 2012
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? :)
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? :)