Today is National Cancer Survivors Day. It’s not a club I am excited to be in. I mean, if you must have cancer, then being a survivor is definitely the way to go, but I wouldn’t put myself on a waitlist or anything.
National Cancer Survivors Day
I’d rather that I just never had cancer. After my first major cancer surgery in 1999 when the doctors sawed my sternum in half, I thought, if only I could implant my memory in other people’s minds. If you only knew what it felt like to be split down the middle, you’d never smoke a cigarette. I only had a little piece of my left lung taken. And then of course last summer, another piece of my right lung. Seriously, you do not want lung surgery. I don’t even have lung cancer yet and I know how much it sucks.
If someone had given me a choice, for example, you can wear sunscreen, or one day you’re going to have a metal spine. Or, if you don’t quit smoking, one day you’ll be typing one-handed and unable to tie your shoes. Well it would be a no-brainer. But chondrosarcoma is not caused by sun damage, or nicotine use. No one knows what causes it. It still sucks, and if given the choice of going through what I did, I would rather do any of the following…
Things I would choose over cancer:
Run a marathon naked in a mosquito infested swamp
Shit my pants in public and have the video go viral (if we’re lucky to live long enough that’s going to happen sooner or later anyway – well, except maybe not the video part)
Camp in a tent in the middle of bear country with a meatloaf as my pillow and bacon grease as my moisturizer
Turn off the lights and go to sleep with a big, fat, hairy centipede on the ceiling above my bed
Go on a date with the perv in my neighborhood who sits in his Toyota Corolla (circa 1993, with a spoiler on the back?!) and once offered his car as a place for my dog to shit
Collect my urine in a jug for 24 hours (I’m actually doing this now)
Swim with sharks while I have my period
Have my toenails ripped off one-by-one and then put on socks that have been soaked in rubbing alcohol and stuff my feet into shoes two sizes too small
You get the idea.
What would you rather do? Would you rather have a little nicotine withdrawal? Would you proudly flaunt your pale, undamaged skin in SPF 100? Yes, this is where I get on my soap box. There are only a few things in this world we are sure cause cancer. Please don’t do those things. Just don’t.
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I received a letter in the mail the other day from Massachusetts General. When I saw the return address, I had instant panic. It’s been just over five years since my treatment and they never contact me about anything. All my follow-up is at Mayo. The only hint that Mass General was even a part of my life is when my Dr. at Mayo says, “I saw Tom, he asked how you’re doing and sends his best.” Tom was my doctor in Boston, though I never called him Tom. Apparently now we are on a first-name basis.
What did Mass General suddenly want now? If you have any idea how fast my mind works, it didn’t take long for me to get to several worst-case scenarios: Hey, we’re just checking to see if you’re paralyzed yet? Any new cancers? Oh, we just realized proton beam therapy can cause herpes, which usually starts about five years after treatment. You’re insurance decided not to cover your treatment after all and you owe us $2 million. And that was all in about 10 seconds.
I once received a letter from Mayo that said something to effect of, you recently had a procedure that could result in blindness. What??? Now I have to worry about going blind? There was a check box, Did your doctor inform you of the potential side effect of blindness yes or no? No! No one told me I could go blind. Then the kicker. Please be aware, if you were to lose sight, this would be an immediate side effect. Well, they might want to lead with that next time. And send a copy in braille just in case.
So I opened the letter and Mass General wants me to tell them what is wrong with me instead of the other way around. They want me to participate in a study and answer questions to assess my physical function and quality of life.They want to know how I am doing so they can tell people how it really is.
That’s a little scary. Had I known what life would be like with a metal spine, I still would have had the operation, but I think I would have been way more stressed out about it. About 9 months after my surgery, I posted to a chondrosarcoma support forum and asked when I would feel normal again. When will I not be sore and stiff and uncomfortable? The answers? Get used to it. Get a heating pad. Get some drugs. That’s when I became aware of the term “the new normal” because the old normal was long gone.
Now I do sleep on a heating pad. Yes, it’s dangerous and I could catch on fire, but I’m willing to take that risk. I’ve given up blow drying my hair because it’s just too much work. Now I wash my hair at night, put a towel on my pillow (under the heating pad) and spread my hair out and wait for morning for it to dry. I’ve gone from the girl who traveled with her own hair dryer and diffuser to the girl who travels with her own heating pad. I type one-handed. Folding laundry is the worst. I use my teeth to open things more often than I should. I can’t sit for too long. I can’t stand for too long. I can’t lift as much as I used to. I pull my pants down to open things. My thyroid is dead. I can’t swallow anything in capsule form. I’ll ask anyone to help me with anything with no shame or embarrassment (OK, that’s probably not new, but I do at least have a reason now). And I’m constantly managing my pain, stiffness and energy.
Of course I’ll participate in the study, but I feel a little guilty. I’d rather be able to tell people that everything is great – better than ever. The truth is that many people have it much worse than I do, so I remind myself of all the things I have to be grateful for. One of those things is this blog and my ability to share my story and hopefully help some people in the process. Had I not gone through everything I did, I wouldn’t be here blabbing about life, as if I’m some kind of expert – and maybe giving someone hope, a light at the end of the tunnel, or a laugh, even if it’s at my expense.
The study is only for people who have had chondrosarcoma of the cervical and thoracic spine and they hope to have 35 participants. Nothing says rare disease like being able to fit everyone who’s ever had it in your house. When I decide to invite them all over for a party, I’ll make sure to send a copy of the invite in braille just in case.
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Recently, I had the opportunity to sit through a timeshare sales pitch. Yes, I said opportunity. Sales people and their techniques are so interesting to me. For one, I am so stubborn and strong-willed I want to see how they will try to talk me into something. Yes, I realize that I am technically a sales person, but I don’t see myself that way. If we’ve worked together you probably don’t see me that way either. I am never trying to “sell you something” I’m only trying to help you with a problem or an opportunity. I have never talked someone into buying a house, but I know I have talked some clients out of buying a particular house. I see myself as being in service more than sales..
Anyway, I guess it’s not necessarily just sales people, it’s anyone who wants to change my mind about something. Years ago I was obsessed with going to the Scientology Center. They would hand out fliers in Minneapolis on Nicollet Mall for a free personality or IQ test. I can’t remember exactly, but I wanted to go to see how they would try recruit me. Would they try to brainwash me? I don’t think I’m brainwashable. It was sort like George Costanza thing with the Sunshine Cleaners.
Finally, I got my friend Amy to go to the Scientology Center with me. It was literally one of her last days living in the state of Minnesota so I had finally wore her down. We went on a Saturday night and both downtown and the Scientology Center were busy. As we took the test we could hear people upstairs responding loudly and in unison everyone once in a while and that creeped us out. When we finished the test we were separated to go over the results. I thought the next time I see Amy, she could have a new religion. The woman talked to me for a while which might as well have been the teacher from Charlie Brown talking until she told me that I was sad, that I didn’t have a lot of friends, and people didn’t really like to be around me. “How do you feel about what I just told you?”
“People love me. I don’t know where you came up with that, but you couldn’t be more wrong. I’m like the life of the party. Everyone wants to be around me.” I was really disappointed that that’s all she had. She thought she could just knock me down and then pick me back up (for a contribution to Scientology of course). Then I was mad thinking that there probably are a lot of people who buy into that sort of persuasiveness. They didn’t convert Amy either and we were off on our merry way, and of course someone we knew saw us walking out the door, so that was awkward to explain. “We wanted to see if we could be brainwashed.” And if I have offended any Scientologists with this post, well Tom Cruise has been offending non-Scientologists for years. Don’t be so glib.
Back to my timeshare story. It was beautiful Sunny Mazatlan in December and I was vacationing with some friends. The resort was sprawling and amazing and the only catch was that we had to sit through a timeshare pitch in order to get the discounted meal plan. We met our salesperson in the lobby and she started us out with a tour. Immediately I was wondering, Could I do this? I wonder how far she has to walk everyday? Maybe I could take the golf cart. This wouldn’t be a bad gig! She showed us around the property which was lush and beautiful and then she took us to breakfast. She started her pitch telling us, “I know you’re not really interested, but I do have to go through the formalities.” She asked us about travel we’ve done in the past and travel we’d like to do.
I declared, “There’s nowhere I want to go for seven days and there’s nowhere I really even want to go for five days unless I can bring my dog.” And it’s true. I do miss him terribly when I’m away from him. That pretty much sealed the deal that I wouldn’t be buying a timeshare so the focus went to my friend. She took us to a table outside where she got out her three-ring binder. After she went through all her information (which by the way, did not include pricing) she said. “I know you’re not planning to buy,” and in that pause my friend had the look of “wait a minute, maybe I do want to buy, don’t tell me I can’t buy.” Of course the salesperson recognized this look too. “I mean, if you were going to buy, what would you even want?” And that my friends, is when the hard sell started. It was game on.
Then I realized, I do use one of her sales techniques – the take away. Only I don’t use it on clients. I use it on men – dating is basically sales afterall. You know when you’re at that stage where you don’t automatically have plans with someone on the weekend, but you’re close? Or you’re feeling like maybe the other person isn’t putting in much effort? That’s when I use the take away. If he hasn’t mentioned the weekend by Thursday, I give a preemptive “Have a good weekend!” It freaks the shit out of guys, just like my friend suddenly having the timeshare pulled away. What do you mean have a good weekend? Don’t you want to see me? I thought we could hang out? Works every time the guy actually likes you – which is good to know.
My friend ultimately did not buy into the timeshare, but I watched the salesperson reel her all the way in and struggle to land her. She offered incentives, discounts and one-day only pricing and I wanted to puke. I may have intervened a bit and the salesperson was definitely not my fan when it was all said and done, but the feeling was mutual. And now I know that I will never run off to Mexico to sell timeshares.
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I’m sorry if I left you hanging after my last Mayo post. I’ll cut to the chase. I did finally speak with my lung surgeon and I have all of my questions answered. I’ll have another check up both for my lungs and my spine in another six months.
There is still one spot on my lung that has grown from 2mm to 3mm in the past six months. Of course that makes me nervous – a spot on my lung that has grown. However, it is still very small. Since the last spot they removed was 4mm, and not cancer, the doctor wants to check me again in six months. I know some of you are thinking, OMG, get that thing out of your lung before it explodes. That’s what I thought before the last surgery. My doctors were very aggressive with me because, wait for it….I’m unusual. A spot that small wouldn’t even be noticed on most people, but my CT scans are compared every six months. If I didn’t have my unusual problems, I doubt that I would have had lung surgery. The surgery itself is highly specialized – I had to first go in and out of a CT scanner as a doctor poked a really long needle (I didn’t ask how long until it was over) into my back in order to shoot radioactive material into the exact area the spot was so that my doctor would be able to see it when he stuck the little cameras in me. It certainly beats having your sternum sawed open and ribs spread a part, but if I don’t have to have another lung surgery, I’d really rather not.
So I was a little frustrated with the new doctor and nurse at my check-up. They don’t understand me yet. It takes time for some doctors to warm up to me and my questions about things I’ve found on page five of a Google search at 2 AM on one or more sleep medications. Though I joke about doctors always referring to me as unusual it is quite frustrating to be the one they can’t quite figure out. If you’re going to call me unusual, be prepared to answer all of my unusual questions and we’ll be fine. This last doctor gave me an “I think you’re scans are fine. I don’t think there is anything to worry about.” Yeah, I need a little more confidence than that. I wouldn’t get very far saying, “I think I can sell your house.” I don’t want to be lied to, but I need a doctor with confidence. I will continue to see my other doctor and nurse, these new people are in addition to my existing team. My regular doctor and nurse get me. It took awhile and the doctor made me cry – like uncontrollably bawl, at one of my very first appointments. It was so bad I almost didn’t go back. Now, nearly six years later, it’s like that never even happened. They let me ask my questions and go through all the what ifs and then we talk about our dogs and real estate.
That was a really long day of appointments and it took me awhile to recover and process it all. It takes a toll both physically and mentally. Just being upright that long for me is a killer. I mean, I can do it. Obviously, I’d rather not. My body takes too long to recover from that, and when I say recover, what I really mean is get back to some reasonably manageable pain and discomfort level. It’s stressful, too. I didn’t really think anything was wrong this time. The last time I was sure something was wrong and I was right, only it wasn’t what I thought was wrong. Either way, your mind can’t help but go to the what ifs.
Oh yeah, and I haven’t posted the last two days even though I promised I would post every day in January. Sue me.
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I think my metabolism has caught up to my age. I’m still hoping it isn’t true because I know if it is, that means I have to start exercising. I also got a book for Christmas and although I’m only twenty pages in it’s pretty clear that the message of the book is that I should be exercising every day. Every single day.
My tap dancing career is on hold as the class has disappeared. Yes, I can find another class, but it would suck to go from tapping to Adele and Beck to show tunes. Just not my thing. I did just get snow shoes and I have gone once and now I’m waiting out the Polar Vortex until I can go again. For any of my non-local readers, it’s been below zero for like the last two weeks. It’s horrible. I did get an at-home pilates reformer in the fall. I’m trying to get in the habit of using it. I did well at first, then I got Ebola a few times, went on vacation and now I’m trying to get back on the bandwagon. It has a jump board, so it’s like jumping on a trampoline when you’re lying down. And I do love to be horizontal. This is kind of a creepy video, but this is what it is:
I eat pretty well except when I don’t. For example, today I had salmon, grapefruit, oatmeal (so did Baby, he’s one healthy dog), and then I had a cupcake. Sweets are my downfall. Sometimes I buy a can of frosting and just eat it. If I buy a half-gallon of ice cream it is gone so fast. Why is it that I cam forget about salad in the crisper, but I never, ever forget when there is ice cream in the freezer? I try not to buy that kind if stuff, but I do have weak moments. My doctor said I should stop buying ice cream at the grocery store and only buy it one scoop at a time. I guess that would rule out having ice cream for breakfast. One of my tricks is to eat the worst thing in the morning. That way you have all day to burn it off. Besides, if you’re anything like me, you’re going to buckle and eat it eventually, better in the AM than 10:00 at night. I’m not saying I eat something bad for breakfast everyday, only when there is something bad in the house
In the past, if I wanted to lose a few pounds I could sleep it off. You may think it’s crazy, but you can’t eat when you’re asleep. I used to be much better at sleeping so that technique doesn’t necessarily work anymore. If I could hibernate I would as long as Baby could hibernate with me.
What I really need in my life are these two genius ideas. Can’t I just do nothing?
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Tonight the Golden Globes are on TV. For someone like me, who doesn’t really care about sports, this is like the Super Bowl or the World Series. If you are not an avid awards show watcher, let me tell you why the Golden Globes is the best. First, it’s both TV and movies. I don’t see a ton of movies, but I am interested in movie stars. The Oscars can get a little boring when you haven’t seen most of the movies. The Golden Globes is like a two-for-one for me, like the Ocars meets the Emmys and gets wasted. Second, the Golden Globes is put on by the Hollywood Foreign Press, and I think it’s always interesting to see what shows or movies they pick up on compared to the Oscars and the Emmys. Third, and most importantly, this is the only awards show where the celebrities are drinking during the show. And sometimes they drink a lot. I mean, I sure hope they drink a lot. This can make for some very interesting speeches, tripping, flirting, insults, and if we’re lucky, wardrobe malfunctions. One could easily argue that some fashion choices alone are wardrobe malfunctions.
It really is all about the fashion. The E! network runs four hours of pre-Globe TV. Yes, they talk about the nominees and make predictions, but it’s fashion-centric. There is as much debate over what someone will wear as there is on who will win. And I love every minute of it. There is something quite decadent about wearing pajama pants while critiquing others fashion choices. The worst dresses are always the best to talk about it. Helena Bonham Carter’s two different shoes is the all time worst for me. You have to really try to look as bad as she does which I find a little insulting. Don’t get me wrong, I’m all for standing out in a crowd, but in a good way. I once wore two different shoes to go shopping. I didn’t realize it until I was in a dressing room at the Mall of America. It was the era of black chunky shoesand I walked into a dark closet and put two shoes on that felt the same. I was mortified to be in public with two different shoes on, I cannot imagine choosing to do so for the red carpet.
Speaking of red carpet, I’ve got pre-gaming to do. And if you’re wondering, no, the Investigation Discovery Channel does not have any shows nominated.
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Wives with Knives, Nightmare Nextdoor, Southern Fried Homicide, Fatal Vows, Happily Never After, Who the (Bleep) Did I Marry? The list goes on and on and just gets better. I’m talking about the shows on the Investigation Discovery Channel (ID for those in the know).
I’ve written before about my interest in crime due to my gift of fear. Dateline NBC is fine for novices, but if you want true crime all the time (my slogan, not theirs, but they should totally use it) the ID channel is where it’s at. Behind Mansion Walls, Deadly Affairs, Fatal Encounters, My Dirty Little Secret – whoever gets to come up with these titles has a better job than nail polish naming.
I fall asleep with the TV on, and as I often times have insomnia, ID is one of the few stations that doesn’t have infomercials on in the middle of the night. I used to wake up and turn the TV off at some point, but ever since the unfortunate chipmunk/squirrel incident I leave the TV on, as well as every other light in the house. As I sleep, I’m taking in murder after murder – crazy, violent crimes. So I wasn’t super surprised when I woke up this morning having dreamt that an ex-boyfriend was a serial killer. There were aliases and evidence, and the police wanted to talk to me. Pretty disturbing given everything I have done in my life to steer clear of serial killers.
I’ve also had several squirrel dreams lately. Also pretty disturbing considering everything I have done in my life to steer clear of rodents. I don’t think it’s TV that’s causing the rodent dreams, maybe PTSD, though.
I may have to find a new channel, I’m afraid if I land on an infomercial I’ll be ordering Wen in a melotonin/lunesta haze. Speaking of, anyone interested in an unused copy of hip hop abs? I blame ambien.
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3:20 pm I’m called in for my appointment
3:30 pm the nurse comes in and pulls up the scans. Everything looks good except there is a note that a spot in my lung has grown from 2mm to 3mm in the last 6 months.
3:45 pm The doctor and his entourage come in. He says everything looks good. I shouldn’t worry about the spot on my lungs, but I do need to wait and meet some new doctors. I’m not exactly being passed off, but they are introducing me to the Sarcoma Clinic. Since no one other than me is really looking out for the big picture, they are going to have the Sarcoma clinic start seeing me as well.
4:20 pm Still waiting. They have been announcing a blizzard warning every so often since about 2:00pm. I did not get in to see an eye doctor, but in my time between appointments I did eat an entire pizza (of course the only time I got weighed was after the pizza) and listened to a few hours of a The Andy Cohen Diaries. I’m so tired.
4:58 pm The nurse came in, talked to me about my history, and my scans, and checked out my scars. Did you you know everyone has a layer of fat on their head? I just saw my head-fat in a scan.
5:34 pm the nurse came back in after trying to reach the radiologist. Apparently not everyone agrees on his report and whether or not the spots on my lungs even exist. The nurse left to get the doctor after I asked for a full-body scan and I wasn’t really buying her reasons not to do it. Poor Baby is going on 12 hours alone with no potty break. I did not think I would be here this late.
5:51 pm Loudspeaker just announced two missing children last scene in the pharmacy.
5:52 pm All clear in the pharmacy. I think that means they found the kids. Still waiting for the doctor.
6:06 pm Dr. finally comes in, gets paged and excuses himself.
6:07 pm Dr. comes back in. We look at the scans again for another 21 minutes. I’m just trying to make sure that all spots are present and accounted for. He says, he “thinks” I’m fine. The nurse is calling my lung surgeon in the morning to go over the scan with him. Basically today’s Dr. doesn’t exactly agree with the radiology report.
6:34 pm I’m outta here. Fun day, huh?
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Because I committed to posting everyday, and I believe a lame post is better than no post, you’re not getting much. You’d probably rather have no post than a lame post and I get that, just bear with me. This is slightly more about habit-forming than entertaining you. Sorry.
However, I do promise an interesting post tomorrow. Maybe even two. I’ll let you walk in my shoes for an important day. Don’t worry – they won’t be tap shoes or snow shoes.
Until tomorrow.
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4:45 am my alarm goes off. I take my thyroid medication while still in bed and rest my alarm for 5:04. You’re supposed to take thyroid medication first thing in the morning, and then you can’t eat for thirty minutes. I usually take my medication and then go back to sleep, because what’s the point of getting out of bed if you can’t eat.
5:09 am I finally get up. Vitamins, tea, breakfast and a little make-up and I’m out the door by 5:45. Baby is not happy about any of this – getting up early or me leaving.
5:45 am On the road. It’s dark, freezing and super windy. So windy that at times I really had to hold on to the steering wheel because the wind was moving my car.
7:20 am I arrive at Mayo and it’s still dark out. I knew it would be dark when I got up, but I wasn’t expecting it to still be dark when I arrived. I’m usually not up before 8:00 am.
7:33 am I’m called in for my CT scan. As we’re walking back, the woman asks, “Metal?”
“Yes,” I replied thinking huh, she must have looked at my records to know about my metal spine.
“I figured,” she said. “That’s your age group”
“Oh, you mean metal in my bra!”
You can’t have any metal on in a CT scan including underwire. The scan itself is about the easiest test you can do. They send you in and out of a big doughnut a few times and then you’re done.
7:47 am Done with CT scan
8:20 am check in for MRI
8:33 am called in to start IV. The IV is so they can inject contrast dye. When it’s injected, your whole body warms up and it feels kind of like your are peeing yourself. The tech tells me my scan time is 9:25 am, even though my appointment time is 8:55. So now I’m waiting in a little room sitting in an IV chair. I have the TV off because there is blogging to do.
9:46 am Still waiting.
11:08 am Finished MRI at 10:30, ran to a check up with my hand doctor and now I am waiting to see if I can see an eye doctor today.
I am also waiting for my 3:30 pm appointment in which I find out the results of my morning scans – specifically, is there a return of chondrosarcoma and what’s up with my lungs. If you’re reading this real time, you can wait with me for the results. I’ll post again after my last appointment – good or bad.
Clean Margins 