So I was really hoping to write more over here, but then life got in the way.
Stage 3 breast cancer. All I can say is cancer doesn't care how well you take care of yourself (never smoked, vegetarian for most of my life, organic for the past 10 years, gluten free for the past 8, etc), doesn't discriminate at all.....no family history (well most female relatives are deceased and deceased long enough that they probably never had any mammograms anyway).
Just the fact that something smaller than 1/2 a grain of rice can cause this much turmoil is someone's body is just beyond belief. I still have days where I catch myself wondering what the hell happened to my life? Plus it's silent, you can't feel it (well it was so small no one could) you don't feel bad....people ask me how I'm feeling and this is not like you had an attack of appendicitis and had it taken out and felt better. I felt NOTHING and now have felt like crap for the past 8 months.
Those of you who don't know the whole story, I may as well start from the beginning. Over 50 (yikes!), yearly mammograms. My philosophy for some strange reason (maybe I always knew this would happen? more on that in a bit) was that I'd see my doc in the fall and have the mammogram in the spring, that way whatever showed up would have no more than a 6 month head start on me......well if you can't feel it, that goes right out the window.
So I went in February for my yearly and got 'called back' - not unusual though it hasn't happened in some time, I do have some cysts, but I think with the new digital films, they can see them and know they are there year after year, so don't call you back. I had a feeling all along that all was not well, and I can't explain why. So I went back and had another one with an ultrasound. The tech was very very serious and spent close to an hour looking around, then she went out of the room and the Chief of Radiology came in and looked at the stills she'd snapped and kept saying, that's not it, no that's not it.....she started looking around and lo and behold all of a sudden this ugly, tiny, tick-like 'thing' appears on the screen. It had all kinds of 'legs' coming out from it. Honestly, I knew right then and there. She started talking about scheduling a biopsy, the earliest they could get was in 10 days. I got out to my car and was saying 'what the hell just happened in there?' to myself.....
10 days later I went back for the biopsy, now I don't do blood and guts AT ALL. I was looking at the ultrasound, which the tech spent close to an hour trying to find it again (so tiny), the doctor was going on and on about what she going to do, the noises the 'gun' would make, how many samples she'd get, how she'd put in a marker when she was done, etc. So I'm looking away with my arm up over my head and I could feel stuff running down my neck, so I ask her if it's blood and she says yes, we'll clean you up when we're done...wonderful. I'll also talk about the amazing medical people later as well. There was a CNA in the room and she had to put her full body weight on the gauze to help reduce any later swelling, she was a big girl, very very nice. When you have kids, you kinda lose any sense of modesty, all these people (Women and Infants is a teaching hospital) coming in to look up your crotch. Having breast cancer is almost as bad. So I have this very nice young woman with all her weight on my breast to stop the bleeding for 15 minutes, so we have a nice conversation (I mean what else are ya gonna do???) about my tattoos. And then I had to have another mammogram to make sure the marker was in place. Gee if you think it's nothing, why do you need a marker to 'find' it again? They also told me that 80% of biopsies are negative.
I got home from that and I went online to my AFLAC policy to put in that I'd had a mammogram. I've had AFLAC for about 10 years, as a State worker, we don't get disability insurance, so you have to buy your own. The guy that reps us when I signed up had told me about this 'woman's' policy that pays for a wellness visit and any cancer screening (pap smear, colonoscopy) and a yearly mammogram. It pays out more than you pay for the policy. While I'm on the site putting the info in, I see a PDF that says 'cancer policy', so I clicked on it, and this gobbledygook comes up. I email my rep and ask him, did I buy a cancer policy? There's NO cancer in my family, it's all heart disease, NONE. I have NO IDEA why I bought a cancer policy but I did. I told him I just had a biopsy, he told me if God forbid it comes back yes, to tell him and he'll get the ball rolling on my benefits.
They say about a week for results....I knew though, the demeanor in the room, you could just tell, I asked them later (had the same 'team' the day of my surgery) if they can 'tell' and they said they don't like to make those calls as they are not the doctors, but yes, sometimes they can. A few days later, my gyn (she actually delivered Becca, my youngest, and had left the practice I was in. My main doc had become an admin at the hospital, so I went to her after he was gone) called me while I was at work and started with I'm sorry but I have bad news. This was also the day I had decided to get tickets to the Rolling Stones no matter how much money it cost as I had never seen them and they ain't getting any younger. The fact that she called me on my cell at work and EVERYBODY happened to be there meant that EVERYBODY knew. She also asked me who I wanted as a surgeon. In RI, there is only ONE guy, I had seen him years ago to look at the cysts that I had, and he's continually written up as being THE best, so I said him.
I drove around aimlessly for a bit and ended up stopping at my hematologist who takes care of my IV (for immunology issues). He's also oncology. I left him a message (he NEVER called me back, btw). I got home and my gyn called me again and said, 'Listen, I know you didn't hear anything after I told you I had bad news, so I'm calling you again, do you have any questions?' she then went on to give me her cellphone and home number in case I needed anything, but said she was not in charge of this, the surgeon would be, and she had gotten me in with him the next day.
One thing about breast cancer, you need to stay OFF the internet. It's very individual and what works for you doesn't work for others, no 2 people are the same. There's no good news on the internet.
I went to see the surgeon and he told me it was 'nothing' in the scheme of cancers. It was tiny. It wasn't there last year. He told me I was the perfect candidate for a new process called targeted radiation, in fact, chemo was optional for this. He'd set up the surgery, he'd put in a 'placeholder' for the apparatus, and instead of 8 weeks of DAILY radiation, I'd be done in 5 days. He told me this would be a blip on the radar and be 2 weeks out of my life. He held his hands apart, wide and said if this is stage 4 pancreatic cancer, then he had his hands almost touching, and said this is you. He booked me into see the Radiation doc the next day.
I went to see her, she's a 'wicked' (as we say in New England) girlie girl. High spikey heels, dressy dress, talks with an itty bitty voice, but very very nice. Behind her I see this: http://www.mammosite.com/physicians/radiation-therapy/how-it-works.cfm and ask her what's that...she tells me that's the target radiation device......I say so when you take it out, I'm asleep, right....no.......lidocaine......no......we tell you to take your pain meds that day, we just pull it out......once again, I'm not blood and guts, but I tell her if I'm on the floor passed out, just keep going, because it's 5 days versus 35 days, gotta suck it up and do it.
In the meantime, it's St. Paddy's day. I go out with my friends. They offered to shave their heads in support (they didn't, though they work in the public, but I know many who have done it in support and reaped the rewards of doing such a kind thing for a friend, whatever). Only my 'fourth' child shaved her head for me (and it was adorable) and my daughter's boyfriend.
There are lots more tests, bloodwork, an MRI where you lay on your stomach and your boobs hang down underneath you, all totally mortifying experiences, but once again, the people, techs, nurses are amazingly kind. At one point, I stopped at billing to pick up info as AFLAC needed certain things to pay me. Let's start that they paid me $3000 just for HAVING cancer. I see an extra paper (I had paid my surgeon for my record from him, $25, yet the same info was FREE from the hospital, go figure) from what I already had talking about hormone receptors. So I call him and ask about it, they ask me where did I get that? At the hospital....What are you doing there? I had to have an MRI....Who ordered that? Radiation......we'll get back to you......
I have my surgery at the end of April. You arrive early because you have to go next door to RI Hospital and have this radioactive dye injected into you to see where that area drains, because they take out what is referred to as the 'sentinel' lymph nodes....just to see if it has spread there because there is ductwork....the guy doing the x ray from that looks like Turk from Scrubs, but I lost it in there because it's all just becoming too real, once again, what the hell happened here? I see my surgeon before I go in and once again, he reiterates that this is nothing, don't worry, you'll be fine, it'll be over before you know it.
Since my surgeon knows my feelings about blood and guts, he has me bandaged and taped up the wazoo, but I can 'feel' this thing under my arm, a tube, it's the 'placeholder' for the targeted radiation thingy.....ewwww.
I wasn't THAT sore, most of the breast tissue is fatty, I did hurt a lot under my arm where he took out the lymph nodes.
5 days later I'm back in his office. He starts with I'm really sorry (hate it when they start with that phrase). I think we got it all, but it was in the margins of surrounding tissue and in all the lymph nodes we took out. I'm going to refer you to an oncologist and you can speak to him......and then he says, you are no longer a candidate for targeted radiation (and he knows how skeeved I was about that) so I say, halfheartedly, 'yay? and I went from stage 1 to stage 3. Sucks to be me.
He unwraps me (my radiation doc has said she thinks he has stock in the tape company, it took weeks and all kinds of people to get that VERY sticky tape residue off my skin) and then he takes out this huge syringe and attaches it to the placeholder to 'deflate' it (EWWWWWWWWWWWWWWW) and yanks it out (ouch!!!). He also profusely apologizes to me for telling me it was nothing. He's been doing this a long time and usually something so tiny is not this aggressive.
He gets me in with oncology the next day (see how amazing these people are, they move right along with getting you in with the other 'best' people).
The oncologist is adorable, he just is too cute for words. He is the chief researcher for the hospital. He tells me he has a study (and they have your tissue as they own it when it comes out) that shows that chemo only is effective on women with small cell cancers 4% of the time. Me being a numbers person and a geek, ask him a lot of statistics questions. Recurrence rate for 5 years is 27%, they won't even quote you 10 years. I actually have 2 types of cancer in that tissue, plus it was in all 3 lymph nodes. His study does not take into consideration that it has spread. I'm not holding up radiation by waiting for his results because they won't start until 3-4 week after anyway. In my head, I'm deciding I'm doing chemo anyway, I'm not going to kick myself in 5 years. At first, I didn't think he had any sense of humour. He was going on about wearing sunscreen (being Armenian (well and Irish) I usually don't need it) and I said why am I going to get cancer? and he didn't laugh. But last month when we were discussing the hormone medication, I told him I heard it made you 'fat and crabby' and why can't they ever give you anything that makes you happy and skinny, and he looked me straight in the eye and said, 'Oh, like cocaine?'......so he does have one.
I go back (end of May now) and he tells me I'm not one of the 4% of women, but he has another study where he throws your name into the computer and the computer picks half for chemo and half not for chemo (not experimental or a blind study, you could never do a blind study in humans for chemo unless there was no hope), I figure I'll take my chances (he then 'follows' you for 15 years) and if it comes up no, I'll do it anyway. Well this time it came up yes. I meet with this huge team I now have. I have a care coordinator, a research coordinator, a nutritionist, a chemo nurse, I also continued to see my acupuncture doctor (who used to work at the breast center, but was on her own for a few years now) and a few other people, including this really nice but very strange guy from Czech republic who does the lymphodemia clinic (yes, no needles, no tattoos, no nothing on my left side EVER because of the lymph nodes being gone, I told my doc using the word 'never' to me is like a dare!)
They told me not to drink (not that I drink that much, but your liver is in overdrive so why make it harder?).
They put off chemo for a couple of weeks because I have bec's graduation and the Rolling Stones, but not long enough for her party, you have to start at some point.
I started chemo the 3rd week of June, every 3 weeks, 4 times. The summer sucked. It was 100 degrees most of it, I was REALLY sick (crawling out of my skin) from the anti nausea drugs the first round and missed her graduation party, where I'd planned to tell a number of people in person, because of that, never took them again and was 'fine' (as fine as you can be on chemo)...spent a week in the hospital for fevers, was in the ER for fevers and NOT admitted more than I can count, had to get a shot the day after to keep me out of the hospital....really sucked....I spent most of it on my new couch in my house without A/C, food tasted terrible, drank mostly lemon flavoured water and ate applesauce. And United HELLth had a $100 co pay every time I went to the ER (as my doctor REQUIRED) and was not admitted.
I had friends who stepped up and were amazing.....I had strangers become friends and be amazing. My family was great, I had family crawl outta the woodwork, like my cousin :) ....I lost all my hair. I didn't do a lot all summer, but a few people came and made me go to the beach or out for the day just to get me away from it. I bought a new car (AFLAC money, well I traded in my 1 year old car that I wasn't fond of so it wasn't THAT much, they also 'paid' for my Stone's tickets). I tried to find my happy place and couldn't for a long time. I did get to 'the block' a couple of times, once by myself and once with a friend/my co worker who asked to go last minute, as that was always my 'happy place'.
Speaking of AFLAC, they have been great. I can't even begin to tell you how much money they have given me, tax free because it's not replacing my income, it's an insurance policy....and yes I am talking tens of thousands of dollars. Right now, I get $300 for EVERY chemo script I fill (every month, for years) and I don't have a copay for that at all. $300 EVERY time I went to radiation (33 times). I'm just banking it all because if I ever can't work, I'm so uninsurable. Once again, NO IDEA why I bought the policy.
I worked through most of it, even though I didn't feel like it, it was a nice distraction (though week 2 you can't be around a lot of people because your immune system plummets), I continued agility with the dog (exhausting, but when you have a Border Collie, you can't take a break from that stuff). He continued to compete (and was an idiot but manged to make his times and place in tunnelers). I started back teaching when fall came, and my class was an amazing group of students. I've never had such a great class in all my years at RIC (and they all passed, and I still had 22 of them at the end, I thought maybe they just felt bad for me, but several emailed me and the department chair and said I was the best professor they'd ever had).
I started radiation end of September and that was EVERY day. Before that, they measure you and you get 'prison' tattoos because it has to be exact. They cannot radiate directly over your heart so they have a nuclear physicist plot the angles and you get radiated from (in my case) 5 different angles. I got 2nd degree burns 3/4 of the way though it and thought THAT was going to scar me for life, and they did quit a week early because it was so bad. I couldn't wear a seat belt for weeks, couldn't even stand clothing on it. I had burn cream, holistic creams, a cream from my acupuncture doctor that smelled like Chinese food, nothing helped, it was raw, peeling every day, horrible for almost a month. I still have uncomfortable places where they 'shot' me. And I got exhausted, not all the time, but it was like a 'wave' of it....nothing that sleep would help, pure exhaustion, and I still have that. Still have significant pain under my arm, which runs down my arm to my pinky and finger next to it, which I'll probably always have. Pain where the incision was when I lay on it. Sick from the meds, but I refuse to give in to it and just keep going. My oncologist told me to stop beating myself up about how truly tired and crappy I feel because of what I've been through, but I just think I want it over with and once I feel more like myself, that'll be good.
The next hurdle, when does it come back? Well it never really went away as I'm still on chemo because it's in my bloodstream, ya'd think after all this it'd just go away but no...and daily hormone medicine for 5 years because it's hormone receptor positive, which means if you stop them, it should NEVER come back, which is my oncologist's goal (and mine of course).
So the nurses, medical people, docs? Amazing people, every one of them. You're having a bad day (and there were a few, I really tried to keep that to myself and lose it in the shower or someplace alone) they are there to give you a hug or a word of encouragement. They yell at you for things like carrying your pocketbook over the shoulder of the arm where the lymph nodes came out (her voice rings in my head every time I pick up my purse now!) The radiation people you see EVERY day for 2 months, so you tend to get closer to them than the others. And of course, this being RI, 2 of them knew me from high school.
The day of my surgery, I had to have another MRI, ultrasound, and mammogram, all done by my original diagnostic team, including the CNA who pushed me around in the wheelchair that day. In the ER, the hospital is the baby hospital, no sick people there, just pregnant ones, they get you right into their oncology suite (the intake nurse told me their chemo patients are their VIPs) and you see the same team each time, And poor Dr. Fogarty is always on call.
So my hair is growing back, it's blonde (??) not sure what it's going to end up looking like. I did not get a wig even though I could have for free, there just wasn't anything that looked like my hair, plus it was 100 degrees all summer. I wore my Red Sox hat and they won the World Series, now I'm wearing my Pats hat and though they've been the heart attack team this year and I doubt they can win the Super Bowl, I'm trying. My friend at work also got diagnosed a couple of months ago, her's is different (not spread, not hormone positive) but she has the same doctors and team that I had so I know she's in good hands and it's been nice to have someone to help though this process. She's also very funny and has a great attitude about it, she cracks me up constantly because I think right now you can only joke about something like this with someone going through, or just gone though it. I have friends that have had cancer and breast cancer, but not here, in state, and not recent, the treatments change, etc.
I have learned that though I thought I was pretty strong, I'm really not. I thought all the stuff with Becca was hard, and parts of my life were hard (losing my parents young, getting divorced, etc.), but this has been the absolute worst. Finding out EXACTLY who your friends are has been a huge reality check. It doesn't matter if you've been friends for 40 years or 4 months, not that I ever expected anyone to 'help' me as I'm just not like that. I don't normally ever ask for help, but there are times where you just need it, you need your (closest) friend to talk to and I didn't have that, for whatever reason. (I have others that have stepped up though, so turned out not to be so much of an issue as a disappointment). I kept most of this to myself because I didn't want to burden anyone, although I did 'whine' online from time to time and felt bad about it.....anyway, this has made me question my perception of my relationships and I ended up deciding to just move on because in the end, it's THEIR issue, their choices, their lives that got in the way I guess, and you cannot control the way people react, or expect anything from anyone, ever, like I had ANY control over this!
I know people that you never ask how they are because they'll go on about their ear, their shoulder and every freakin' minor health issue in the big scheme of things for 20 minutes and always have a worse case scenario story, or have to top whatever you may have going on. I NEVER wanted to be that person and made a very conscious effort over the years not to be, and with this nonsense especially, to be sure to ask about them and their lives and not go on about cancer, besides, you get so sick of talking about cancer.....but then there are those that you don't see very often and you have to explain where your hair went, or where you've been.
You make time for a friend, even a little time, especially when they are in the hospital and or faced with a catastrophic illness. Little things like stopping by with coffee or getting out of the house go a long way and certainly help you forget at least for a moment that this nonsense that you have NO control over and has taken over your life is present.
So that's been my last 9 or so months. I had to go back to my gyn last week, where this all began. She hugged me as I haven't seen her since all this started....now we'll see what 2014 will bring, I can't imagine it could be much worse, but I'm knocking on wood for that. As I've said all along, I don't have time for this nonsense, but you have no choice. You have to make time, you have to take it easy (I deal by going to bed by 8 pm most nights). I'm not the type to sit home and mope about it, although some days I'm just so exhausted and/or sick that I'm forced to, there's nothing I did to 'deserve' this, or that I can question myself on (did I stand too close to the microwave? It's Monsanto and their GMO's fault (I really believe that's part of it....don't get me started on our food supply being poisoned!)), should have done, shouldn't have done......I go to who they told me to, when they told me to (for the most part....there were times when I couldn't and then they found out I was still working, they thought I was crazy, in fact they assume you are not working through this). I heard one story from my radiation people that patients come in and need TWO treatments, and not even for cancer, and are asking to get 'written' out of work, I didn't ask until visit 30 and that was just because I was so burned I couldn't stand clothing, the seat belt, etc.
Those of you that have distracted me, old and new friends, online and real life, I can never thank or repay you for your kindness. Thank you to those of you who have been incredibly kind and supportive this year, to me and my family, you are truly the best friends I could ever ask for and I will never forget the little and big things that you did for me and with me. Happy New Year.
