The Rebound Year

New Year's Eve. It hasn't dawned on me much that it's a new decade. And what are we really going to call the last decade? Are we truly going to call it "the aughts" or something? That just sounds ridiculous. And are we entering the teens? Lots of unswered questions here.

So radiation ends on Jan. 11th. This kicks off a few weeks of partying for me. Our house is going to be like that "Jersey Shore" house, except in New England and with a toddler.

No, not really.

But, I plan to try to live it up and relish sitting as much as possible before my surgery on February 3rd. I am practicing sitting with gusto right now in fact. I wish you could see me sitting here like a real pro.

I haven't thought much about the surgery but when I do sometimes, it freaks me out a bit. I may have already mentioned that I have never stayed overnight in a hospital for anything other than pregnancy or childbirth-related reasons, so this is a whole new ballgame for me. And I've never had a part of my spine removed either. So, lots of new tricks for this old dog.

I think I will fully vent my surgery fears later, closer to the actual time. For now I am going to hope that 2010 is ultimately better than 2009 and that I at least win the lottery sometime next year to make up for this cancer crap. I have a good feeling because my 2002 was awful but my 2003 was great, so I'm thinking of 2010 as being the rebound year. 2009 hasn't been a wholesale bad year, but still. 2010=rebound.

Happy Rebound Year to You!

Merry and weird

Welp, the last of a four day streak of no treatments. Oh, and I guess it was the holidays and all, too. There's something nice about not having to go to the hospital for that long a period of time. It was starting to get a little too routine.

I started collecting some things in my head that are just strike me as weird.

1. Sometimes I'll forget that I'm wearing a hospital bracelet many hours after I've left the hospital. I was so not the type to do that in the past. I hope no one has noticed.

2. When I enter the main entrance of the main hospital building, I wonder every time why there aren't people with limbs hanging off or other screaming emergencies. I can see the emergency wing right off to the side. In many ways the main hospital building looks more like a mall or an office building than a hospital when you first enter. Maybe that's a good thing.

These next few have to do with PET scans
3. I still have to do a pregnancy test before every PET scan. And before the test I also fill out a form asking me if I'm pregnant. First, why bother to ask me if you're going to give me a test anyway. Second, I always find it strange to be asked if I'm pregnant. I always say no (at least when I'm not) but I always think "I guess I could be?" The new show "I Didn't Know I Was Pregnant" just reinforces the ridiculousness of this question. Third, why can't I just pee on a stick? Aren't those tests like 99.9% effective now?

4. I also got a Homeland Security card at my PET scan the last time which I could give to customs people if I set off a metal detector or something, since this nuclear medicine would be in my system for 24 hours or so. I am kinda bummed I didn't get to use it. But seriously, do I want something circulating around in my body that could have set off a metal detector?

5. It is strange to come home and find strange stickers on your body that you didn't even know were there!

6. I was psyched to have gotten my period this month since it means that all that reproductive stuff probably hasn't been obliterated by the radiation or anything. At least not yet. (Sorry to get so personal!)

7. I feel more tired now. And sometimes a little nauseous after my treatment. But then I wonder if it's my mind playing tricks on me or if I'm tired for un-related reasons. And then it seems kinda silly to be having this whole debate with myself.

I think that's all I had for this list for now. I need to go play with a new Thomas the Train set. It has been a merry christmas for me. I hope so for you too, if you celebrate Christmas. And if you don't, I hope you had some delicious sushi and watched some good movies.

US: I could give you an exclusive

So, one of my hometown friends told me that I should friend Ethan Zohn on Facebook. He is the Survivor winner whom I went to high school with and who now has lymphoma. She is FB friends with him and said he has some motivational cancer stuff to say on his page. Perhaps, dare I say, more motivational than this blog, for instance?

So, I sent him a brief note and basically the gist of it was, "We graduated together and I have cancer too." I didn't hear back for a few days. I was ready to write him off and then he accepted my invite and sent me a very nice note. The nice thing about it was that it was not at all generic or "why are you contacting me?". Quite the contrary. It was friendly, familiar, and encouraging.

Two things:

One, I know it's been almost 20 years now (Dear God) since high school, but I'm still SO glad it's over. A big part of the problem was me. I was so ridiculously shy and insecure and generally not evolved. But the problem of the rigid high school social structure also completely fueled that particular personality. So I just feel grateful that when we become true adults, we can judge each other at face value and, for the most part, we get over judging people on things like: what they wear, who their friends are, how rich they are, what sports they play, and how sexually experienced they are to name but a few. I know that the Breakfast Club already explained all this to you, but boy was John Hughes ever right.


Two, Ethan has been through the ringer and still has to be in isolation for 30 days for a stem cell transplant, but he has an incredibly upbeat attitude. Maybe that's why he won a million dollars on Survivor. It made me feel a little guilty for having a less than stellar attitude at times. Ahem.

I'm just going to justify it to myself this way. Unlike Ethan, People Magazine doesn't care what I have to say about cancer. So for this blog, for myself and for you, I'm gonna continue keeping it real.

Fire with Fire

We went to a talk about Proton Therapy yesterday at MGH. It was given by a physicist who works with the Cyclotron at MGH. Some of it was over our heads (I took double English instead of Physics in high school, big mistake), but it was still completely fascinating. In some ways, I feel like a part of history. The MGH proton center started treating patients in 2002, but in the next couple of years, these centers will be popping up all over the place and I think this will be THE radiation that treats cancer moving forward.

I got hung up on one part of the talk though. He described how this therapy leaves neutrons in your body which just kinda float around indefinitely and can possibly cause, you guessed it, cancer anywhere else in the body.

He said this pretty matter-of-factly. And it didn't send shockwaves through the room or anything. For one, all us patients in the room recognize that we are damn lucky to be getting proton therapy because it's the only thing that's going to help us. For two, most patients in the room had between 15-30 years on me, so maybe they're not as worried about the cancer they might get 20 odd years from now when they'll be 65, 75, 85. I'll be 55 in 20 years though. I want to see what C does when she's done with college. Especially if I'm paying for college.

This radiation concept isn't new to me. We have a hunch that the radiation Wendy received for her lymphoma caused her pancreatic cancer later in life.

Then there was the report this week that CT scans cause cancer. I had never had a CT scan before 2008, but since my diagnosis they've been fast and furious. I think it's been somewhere between 8 and 10 in the past year and a half.

How much should I be worrying about all this? I have no idea. You can drive yourself crazy and then that will kill you. And I'm not a person who was wired to worry. I'm just not good at it.

I know that the right thing to do right now is to not think about what might happen to my health in the future. And maybe there is something to that Neutron Dance the Pointer Sisters told us about.

Waiting

Let me set the scene of the Proton Therapy waiting room for you. It's somewhat interesting.

When you walk in, Paul is usually at the front desk. He DOES NOT sit down. Ever. His computer is set up so he can type while standing. I don't think it's a physical condition or anything. He is just one of those nervous energy kind of guys who probably had a lot of trouble focusing in English class. D thinks his job is mainly to keep people happy, but I think there's probably a bit more to it than that.

The families with young kids usually stay on the right side of the room. This makes sense because it's nearer to the kids' treatment area, so the parents can jump up and go back when the kids wake up from anesthesia. It's also nearer to the toy area. The pediatric nurse seems really nice. She has a lot of flair on her jacket and wears scrubs that have Winnie the Pooh on them, and things like that. I usually don't really approve when adults wear Disney or other character-themed clothing, but I've decided that, in her case, it is more than acceptable. She is clearly doing it to lift the spirits of the kids, whereas some adults genuinely think they look fierce in a Tigger sweatshirt.

The older folks sit on the right side of the room, near the changing rooms and adult treatment area. Maybe they don't want to have to walk very far when they're called to treatment. Is that a horrible thing to say or what? It's tough seeing the kids, but I also have a hard time seeing the people in their 60s or 70s who are really struggling. At least the kids have youth on their side.

I usually sit in the middle, which is where I belong both literally and figuratively. There are really not many other of us 30-something types there. I wonder if this is true of cancer demographics in general. I think that's a great thing about the Livestrong foundation, it's really focused on young adults with cancer, which was probably a somewhat overlooked demographic before. I don't really know, but I'm just guessing.

I usually go to change and go straight back to treatment, but there is a whole other world back there behind the waiting room. There are tons of exam rooms and offices and the other day I passed a room that was filled with toys exclusively for the siblings of the kids there for treatment. They have truly thought of everything.

Thursday I am switching things up and going to conventional radiation. I'll be doing that about once a week, in the middle of my proton treatments. I guess the idea is to minimize the skin damage of the proton treatment in order to promote better healing after surgery.

Don't know if there will be any side effects with that. I'll report back with anything interesting.

We got spirit

I am starting to get into the Christmas spirit. It's true.

We went to get our tree today and I can see why people say that Christmas is for children. C doesn't even know yet who this Santa person is and/or what he can do for her, but boy is she excited. The Christmas lights alone are thrilling for her. D put some up on our back porch and at night she is just beside herself when she sees them. She begs to go outside and run alongside them and she bursts into fits of giggles and glee. It really is the cutest thing. Maybe this is the purest expression of Christmas wonder and delight that there is, and it's all downhill from here. So I'll enjoy it this year when she doesn't know she is supposed to NEED that Zhu Zhu whatever-whatsit that is made overseas and doomed to be forgotten a week or two after opening.

So this childhood excitement is certainly contagious and it makes you appreciate the holidays all over again. Even the songs don't feel as if you've heard them=500 times x the 35 years that you've lived.

A toddler Christmas is not without its perils though. C is also very excited, yet confused, to have a tree, just like one of those trees outdoors, in our house. It is really hard for her not to touch it , even if we tell her not to in firm or alarmed tones of voice. And she paid the tree the highest form of compliment tonight when she sang "Happy Birthday" to it.

We are living on the edge by keeping it in the living room this year as opposed to the closed-door office. As a result, it looks pretty underdressed at the bottom, which I'm sure is a familiar style for anyone with children or especially enthusiastic pets. I think we can declare victory if only 5 ornaments are broken over the season. One down tonight.

I still wish I didn't have Christmas shopping hanging over my head, but so be it. I just want to give presents without having to hunt them down.

Off to Amazon!

Pros

I didn't feel so down after treatment today. In fact, I felt just fine. I wonder if it had anything to do with the holiday lunch (with wine), I went to beforehand. Maybe I need to drink before all treatments? Also, I think not having to take the T back to work afterwards also helped.

Since I've never been a subway commuter, at first I was kind of excited to get my Charlie card and take the T regularly to and from the city. It felt so grown up and urban. The novelty wore off on about the 2nd day, when the train was jammed and I couldn't sit down. Also, I saw a rat on the platform today. Not the rails, the platform. Rats absolutely make my skin crawl. So, yes T, our flirtation is over and I'm just not that into you.

In the spirit of staying upbeat and neatly segueing from my last post, here are some pros to my treatment:

1. D has been really great. On my first day he gave me a pretty ring as a present and when I jokingly asked if I'd get a present every day of my treatment, he took me seriously and has obliged. No, I'm not getting a Tiffany bracelet every day. The other day for example, I got some of those post-it flags, but these ones say, "F*ck this" and "F*ck that", but with "u"s. I really like them, but I'm a little stumped on an appropriate occasion to use them. Any suggestions are welcome. Anyway, he is trying to be as supportive as he possibly can and I am so grateful for that.

2. I am eligible for a free makeover with products donated by Chanel and MAC. And, unlike department store "free makeovers", no one will want or expect me to buy anything. While I am a little reluctant to cash this in since I feel a little embarassed and unworthy, I am also a sucker for anything free. I am the person who CANNOT pass up a free sample of any kind in the grocery store. D is always five aisles ahead of me while I am trying out three different types of hummus. It's embarassing, but I can't help myself.

3. There is that previously mentioned cancer garden. I haven't gotten back there since the first day though.

4. There is a Starbucks across the street and it is Peppermint Mocha season. Despite the fact that they have about 50,000 calories each and they're just a beverage, I justify seasonal latte's by telling myself, "They only come but once a year!"

5. I can park at MGH for as long as I want for just $4. Bet you wish you had cancer now!

6. There is the odd nice moment in the waiting room. The other day a 6 or 7 year old girl had her last treatment and got to ring "The Bell" commemorating that. Everyone applauded, and I, of course, got a lump in my throat.

That's a good list for now. If I think of any more pros I'll write them up later.

The cons

I do find myself getting down a lot more than I'd expected. I don't think it's the "I'm gonna die stuff" that freaked me out initially. I think I've shelved most of those thoughts pretty successfully. I think a lot of it might be the subconcious effects of what I see in the waiting room. And here is a little list about the other things that just put me in a funk.

1. My weekday schedule is not my own. I have very little control over when I am scheduled, and no idea how long I will wait when I do know my schedule.

2. It's kinda tough to get my job done in the time I am in the office these days.

3. Even if I'm doing the best I can at the office, we're under-resourced generally and when clients complain I can't muster any empathy. Clients are generally driving me crazy and I have no patience for them right now. So I'm faking patience as best I can.

4. Some people have disappointed me. I think maybe my expectations were set too high. And it's weird when people want you to let them know what they can do, but when you do that later, they've forgotten and/or don't recognize it for what it is.

5. I've basically been doing treatment on an extended lunch hour, which sucks.

6. Lately I've avoided telling a couple of new acquaintances in an effort to spare them the awkwardness and baggage but sometimes I think that I come across as being aloof and as though I have such a busy, important schedule (since I'm a slave to my treatment schedule).

Anyway, there is more, but I will whine more later. I also have the requisite guilt about being a complainer, so add that to the list. But I'm trying to be honest on this blog. The completely honest blogs I follow are undoubtedly the best.

co-inkydinks

After my treatment on Tuesday, we decided to check out the cancer garden. This is obviously not the official name. They don't grow cancer there or anything. But it's this beautiful indoor/outdoor garden on the 8th floor of the cancer center where cancer patients are welcome to come for some "serenity now". I have to admit, it works. It's beautiful. The outside roofdeck garden has stunning views of the Boston skyline. I am glad there are wealthy people who are willing to underwrite such things. These things do actually make a difference, so, thank you wealthy people.

There is also an inspiration wall on the 8th with stories of cancer survivors. We immediately recognized a photo of the world-famous orthopaedist from BI who diagnosed me (he was previously based at MGH). While I found him less than cuddly at my diagnosis (in fact, it was downright awkward), the woman who wrote this testimonial of her cancer story, and about him, said that he was really the only doctor she trusted completely. Who knew? It's funny how your individual experiences can be so vastly different. I do credit this BI doctor with putting a word in to hook me up with the cream of the crop talent on chordomas at MGH. I'm pretty sure, from the comments of my present surgeon, that that happened either over emails or cocktails, but the important thing is that it happened, and I am eternally grateful for that.

We also visited the cancer resource room, where they have tons of books you can check out on cancer, and a few computers. On the cover of one of the free magazines they distribute was my high school classmate, the now-famous Ethan Zohn. If he is not famous to you, you probably have good television taste. He was the winner of one of the early, more popular seasons of "Survivor". Gosh, I never thought until this very moment what meaning that show title has for him now!

He is currently battling Hodgkins Lymphoma. I had a big crush on him my freshman year in high school, when he had a really unfortunate hairdo and didn't know I existed. I did manage to get over the crush, and the hairdo, pretty quickly. I do think now though that it was a weird coincidence seeing him on the cover of that magazine. We lead vastly disparate lives, yet there is this slight thread connecting us again now. Maybe seeing that cover was just a sign of, "You're not alone. There are people your age, heck even people you vaguely know, with cancer." I don't know. But it did make me feel a little bit better.

The best Elton I've ever heard

I'm overdue on posting. But, I have been kinda grumpy the past couple of days, and I did promise a post that was slightly more uplifting, so I spared you.

Anyway, back to my treatment.

When I got in on Tuesday, they called me and D in to check out the Proton Beam therapy setup. It is a pretty wild. D got the full tour, but I didn't get that since they eventually decided I needed to change. Robbed. I will not do this apparatus justice in my description, so I really need to muster the courage to take some photos and post them on this blog. For now though, I'll try to describe it. Essentially, you walk in and there is a table suspended within a circular room. It does look a bit sci-fi. There are x-ray machines that pop out of nowhere over your body and start taking pictures. Somewhat like papparazzi I imagine. They've also created these large, very heavy looking, customized brass fixtures just for me, which harness the beam. There is a shelf in the room and all of the fixtures (yes, I'm sure this is the wrong word) sit on the shelf and mine are right there on the shelf with my name underneath. Are you still doubting that I'm special? D and I are both speculating as to whether I'll get to keep these fixtures when this is over.

After I got dressed, (one of the gowns they handed me was certainly for someone about to undergo gastric bypass surgery. I assumed that was some sort of horrible mistake and tried not to take it personally.) I went back and got onto the table. As expected, they pushed me around. Just like the setup appointment, I am supposed to just lie there and let them move me and not "help" them by scootching where I think they want me to go. This is a hard habit to override. I'm still trying to get used to not "helping" since my "help" probably drives them bananas when they are supposed to be very precise about my position.

They made larger marks near my tattoos with magic marker, which they retouch every time I visit, to compensate for daily bathing. I got a little self conscious about this the other day when I was changing for the swim class I take with C. I don't think anyone saw my markups, but if they did, I'm sure they'd wonder why I have purple magic marker targets on my hips and stomach. Maybe I should write, "It's nothing kinky, I swear." underneath, for my next locker room visit.

So a couple of minutes after I got on the table, the circular room literally moved. No one warned me about this! It was one of those optical-illusion moments, where you think you are moving when you're not. Is that what the Turkish Twist is like at the carnival? I can't quite remember. Anyway, I just stayed calm and assumed that if I was going to flip over while I was lying unrestrained on a table, someone would probably rush in and try to stop it, wouldn't they? That just has malpractice written all over it.

I did quickly realize that this was just an optical illusion, and the table wasn't actually moving, the room was. It did remind me a bit of bedspins though, after a night of a tad too much fun. I didn't have the preliminary fun to show for it though, or, fortunately, the vomiting afterwards.

Anyway, the whole shebang really didn't take very long. A Christopher Cross song, one of Chicago's greatest hits, and Elton John's "Daniel" and we were done. I've also realized that the satellite music stations are switched up by particular techs. This particular day, the station had to have been chosen by the short, friendly, late forties/early-fifties guy. The next day, I guessed by the Katy Perry and Britney Spears that it was the female tech in her late twenties calling the shots. It is a good room to listen to music in, I must say. This $30-$40 million dollar room has great acoustics! They've said I can bring in a CD if I want (they're not Ipod-ready yet, did I really say $30-40 million?). I might have to do that just once. D and I agreed that MGMT would be pretty fun in there.

I did feel a slight twinge of physical discomfort in the radiated area afterwards and occasionally in the days since. Still, nothing bad. Nothing I'd even take a Tylenol over.

More to come on the rest of that day and bits and bobs from the days since....

The kids aren't all right

The toughest part of my first day of treatment was precisely what I thought it would be. Seeing the kids.

This type of radiation is often used for clival chordomas and other brain tumors since the impact on the surrounding tissue is minimal. So, a lot of these kids have brain tumors.

My appointment was on the early side of the afternoon and when we arrived there was a girl, around C's age, toddling around. Most of her hair was gone, but she didn't seem too bothered about that. At one point, Paul at the desk got off the phone and announced "Lucas is awake!". I gathered that this meant that Lucas was awake from the anesthesia he was under to have treatment. Lucas's parents got up from the waiting room and brought him back. He had the same non-hairdo as the little girl and was also about C's age. They were both contentedly sucking on their pacifiers.

I'd been thinking of when to break C of her bedtime pacifier habit. Since she's almost two, I was wondering if we should try to tackle it on my break before surgery or if we should just put it off until I'm through with all this. Seeing these kids with their paci's made me think though, it must not even occur to their parents to consider weaning them off the habit. For one, it's such a non-issue when you have so many larger issues to contend with. For another, I think, if I were in their shoes, I'd feel that anything that would bring the slightest bit of comfort and security to my child while they are going through this is what I would want for them, for as long as they would want it.


When I've been stuck in MRIs and CT scans over the past few months and I've had too much time to think, I've started feeling sorry for myself sometimes (particularly with the MRIs because I hate them.) But the thought that has snapped me back on track when I go down that road is, "Better me than C." And I instantly feel better. Sincerely.

I've always felt bad when I've heard about bad things happening to kids. But that feeling intensified about a thousandfold after I became a mother myself. It took me by surprise actually. Hearing about a kid who has suffered, no matter whose kid it is, feels more like a sharp kick in the stomach now, whereas before it must have felt more removed.

So, seeing these kids was tough. I had lumps in my throat for sure. And if I looked over at D, I knew he knew what I was thinking and he was thinking pretty much the same thing, which just aggravated the feeling. So I reached for a magazine (is there a pattern emerging here?) Breaking down in the waiting room is not going to help anyone, least of all these kids or their parents.

Am I going to get used to this?


P.S. Jared Vance was a great kid and just 7 years old when he died from a clival chordoma on Monday. If you are thankful for your healthy kids, grandkids, nieces and nephews, and/or neighborhood troublemakers, you can donate to The Chordoma Foundation on his behalf at: http://champions.chordomafoundation.org/pages/180. I bet you won't even miss the money and it will be money well spent.

P.P.S. I have some lighter posts ruminating, don't worry. I still plan to update you on my own experiences of the past couple of days and it is much less grave, I promise.

Wendy

I've been thinking about Wendy a lot lately. She was D's stepmother. She died in 2006 of pancreatic cancer at age 46.

She was not the type of person who walked into a room and commanded your attention. She was much more understated than that. And smarter. But, somehow, family gatherings with D's side were a lot of fun when she was around. Ever since she died, they are, frankly, not very fun. And it's not because we are sitting around moping that she's gone. It's just that there is a tangible void.

When she was dying she told a friend of ours, who is a minister, that she felt she'd been so lucky in her life. For someone who had had cancer in her 20s, lost both her parents at a young age, and was now dying at 46, that might sound like an odd statement. But I do think she sincerely felt that way. She had traveled extensively, had been extremely succesful in her career, had found the love of her life and had a new family to go along with that. How she was not bitter about leaving all that behind so early, I do not know.

I hadn't been thinking about her as much in the past couple of years. But lately, with everything that has been going on, she's been on my mind more. I've been wondering how she managed to cope with having cancer twice. And I've been regretting that I had so much trouble finding something to say to her towards the end.

After she died, D's dad gave me some of her jewelry. Nothing fancy, just everyday kinds of things. I was thinking that it would be nice to wear something of hers every day that I'm going through treatment. I don't know what it means, exactly. A show of solidarity for someone we cared about, who didn't live as long as she should have, I guess. And just a reminder that we are still thinking of you, Wendy.

back to what

Well, it's the last day of our Thanksgiving vacation. Today is the best day weather-wise, for sure. It's beautiful. And, as much as I hate winter, I'm surprisingly happy that it's somewhat cold. The warm weather in November felt kinda creepy and even the flies seemed confused as to why they were still alive.

Despite the earlier mishaps on this trip, it's been great. Relaxing, beautiful scenery and lots of food and drinks, as I'd hoped. It's been great to be with our little family and our friends. C has been so great. Her language is just developing so much every minute, and she's becoming such a sweet little person. And I just love it when she sings her little songs. I am really smitten with this kid.

So, back to the mainland today. Then, on Tuesday, I am back to Phase 2 of this whole process. It's a strange time right now. I'm about to go back to work, but I won't fully be mentally or physically there. I'm about to start treatment and I'm not entirely sure what to expect. And, then there's Christmas which is alarmingly early-feeling this year. So, it doesn't feel like I'm heading back to "the grind" as I normally would after these types of breaks. It's definitely back to something, I'm just not exactly sure what.

minor trauma thanksgiving

Oh boy. Well, it wasn't the most relaxing Thanksgiving I've ever had.

It started out great. We even got through a really excellent meal. But when I was putting C to bed she fell off the big bed. I would normally not be totally freaked by this, but the silent scream lasted for a while. Then when I felt her head there was instantly a huge lump and it was bleeding a little bit. I rushed her downstairs and D tried to put ice on it, but that was hurting her, so she was resisting.

I felt absolutely awful. For one thing, she usually gets over bumps and scrapes pretty quickly, but she wasn't this time. And whenever there is blood involved, that alarms me. Bleeding from the head is never good. And, of course I had a lot of guilt b/c I should have prevented the whole thing. I think the biggest thing though is that it's always worrisome when someone hits there head.

I was pretty upset and worried sick for the rest of the night. It was certainly a freakout.

In general, I am more of a worrier than I used to be. I think part of it is just being a mom. I think my complete freakout at last night's situation though was in part due to my recent realization recently that bad things can happen to us. While I guess I should have realized this before, I think I'm more often mentally preparing for the worst these days (if you can call a freakout "preparing".)

She didn't have any of those scary head-trauma signs, thank god. And she (and her bump) seem much better today.

Did I mention that C also has a cold, was constipated, and was hit in the face with a hula hoop yesterday? Poor kid. I don't think she had much to be thankful for yesterday, but she was a trooper.

Flu-sies

OK, it's true. I dropped the ball AGAIN on the posting-every-day thing. Still, I am cutting myself some slack (even if you're not) because I've posted most days. And I will bring my laptop to the Vineyard over Thanksgiving and attempt to post there. I have no idea if they have Wifi or not, but we'll find out later, now won't we?

I am very excited about this trip because it will be a nice Thanksgiving on an island with friends. And there will be relaxation and fun and food and alcohol. Somehow at the liquor store the other day we scored a magnum of the Spanish "sparkling wine" that we served at our wedding. For $9.99! And this stuff is good. I'm sure you don't believe me, but it's true! I think we might need to get another one for New Year's...

Here's what I'm worried about:

C had a sniffle and a little cough this morning and was in a clingy mood. Those are never good signs. The last time a big group of us all stayed together in the winter, we all got a stomach bug and it had a domino effect of disastrous proportions.

It wouldn't exactly be pleasant if C was sick for this trip. For one, she wouldn't have much fun and enjoy playing with her buddy S to the fullest. For two, she wouldn't be her delightful self, and I always prefer people to see the fun, playful side of her rather than the sick, cranky, lethargic side of her. And, of course, I don't want anyone else to get sick.

So, please luck fairy, smile upon us and let this sniffle evaporate into thin air. I promise to be a good girl!

In good news, I finally heard that C will be able to get the flu shots on Monday. Now I just have to worry about getting myself the flu shots. While my PCP agreed that it's important for me to get the shots so I don't miss any of my treatments, she had nothing to offer me. This is all getting pretty ridiculous. I'm surprised there isn't a flu shot black market cropping up. I can see the dealers: "I'm holding oxycontin, crystal meth and flu shots...." And is everyone sick of calling, obsessing and talking about the dearth of flu shots yet? I sure as hell am. I guess it's still better than being sick of everyone having the flu. But it's just given New Englanders another thing to b*tch about for a good part of the winter besides the weather. And I don't think we actually needed another thing.

You and your beeswax

OK, I blew it again with posting yesterday. Something about staying out late and having a tad too much wine erases the whole blog commitment from my memory. (Thanks M & Y though, we had a lot of fun!) I like to think of it this way: I've spared you a pretty shoddy post.

So lately there is a trend emerging with some of my friends who seem to be feeling a little afraid to complain too much about the crapola going on in their lives because they perceive it in relation to my cancer. I think they don't want to be seen as whiners when I'm going through something relatively major. I say to them, "Bring on your crap." I am still getting p*ssed about little things at times. Sometimes the day to day grind is unbearable and I won't judge you for whining.

If hearing my news gave you some perspective and made you feel like you could blow off something that was annoying you, then that's great. Just don't feel that you shouldn't express yourself. We're all in a different place and time in our lives. Sometimes the thought of spending Thanksgiving with your in-laws feels worse than spinal surgery. And it very well might be. I get that.

That said, lately I've heard of some really immature behavior by some non-friends. People who are just whipping up a whole mess of drama and self-pity over nothing (in my humble opinion). I'd really like to just shake some of these people. Hard. And say, "Get a grip! Grow up!' Not even so much relative to my situation but in relation to Chordoma stories I've recently heard, or relative to people who are really struggling in this economy.

But I promise I will not get physical with any of them. I will just be here minding my own beeswax.

If you don't laugh....

I already told you about my CT scan on Tuesday for the research study. I came home early from a business trip and missed a client meeting so I could go to that scan.

Welp, there was a message on my phone today from the Radiation Oncologist. It turns out that somehow (and even he admits he doesn't know how this possibly happened!) all the data got wiped out from the scan. So it was essentially a waste of time.

Trust me, I was pretty irked. I wanted to muster up more pissed-offedness, but I couldn't when I called him back. He was obviously completely embarassed. He said he had called to complain to the head of nuclear medicine and he also said he called the equipment manufacturer.

So, my options were to give up on the project altogether, or to do it all over again. Now, it's not some horrendous painful thing, but it's not exactly Sunday brunch either. Here's what it involves:

First, a pregnancy test to make sure they don't nuclearize some poor fetus
Wait 1 hour for pregnancy test results
Get injection of a scary-looking nuclear medicine (It is kept in a cement vial-so not kidding)
Wait about 2 hours for medicine to make it's way around your insides
Get into CT scan machine.
Lie on back with arms over head for LONG periods of time

I don't typically lie on my back with my arms up over my head for long periods and on Tuesday I got to the point where my arms felt like they were falling asleep and I was DYING to move them.

So, while this is not the worst experience in the world, it's also not one I was anxious to repeat. Especially for no bloody good reason. And no, software malfunction is not a good reason! (And you also have to ask yourself if software malfunction is code for, "someone f-ed up")

But I will do it again for the sake of research. Someone else probably did something similar for my benefit in the past, right?

Still I am beginning to think that the luck fairy is not so happy with me. But I feel superstitious even saying that. Sorry luck fairy! I like you!

The name

For the first time in a while, I don't feel terribly inspired today, so I will explain the name of this blog.

My almost-2-year-old likes those plastic buckles. I mean she REALLY likes buckling things. Luckily, she hasn't mastered unbuckling yet, which is a blessing.

So, if we are putting her in her carseat, for instance, she will often insist on taking over the buckling responsibilities by saying "MY buckleup!". I'm usually happy to let her.

She likes it so much in fact that D got a short strap and two buckles at REI for her to go to town with. It's a good toy, it probably set us back .52 tops.

When I was trying to think of a unique name for this blog, that one just came to me and, lo and behold, it wasn't taken.

Some have suggested that you could attribute a deeper meaning to that name related to my experience and while that's probably true, I don't think I have the energy to explore all those connections (i.e. I'm lazy). I think it would feel like trying to find the symbolism in my high school film class, at those times when I didn't know what the symbolism symbolized. I will be honest, I still have trouble with Chinatown.

So there you have it.

oldies but goodies

I had my first of two PET CT scans yesterday for the study I'm participating in. For you nerds who crave the detail, this is to look for hypoxia (wikipedia it.....OK, OK, it means low-levels of oxygen) in chordomas. My radiation oncologist's theory is that chordomas with low levels of oxygen might respond better to a higher level of radiation. So far, only about 5 people have participated in the study (I told you we chordoma-ites were special!) and I think hypoxia was only found in one. Either way, the results are not going to alter my course of treatment. It's purely in study phase right now.

At one point I changed waiting rooms and there was an older guy in there with his wife. he was probably late 70s or early 80s? To my surprise, he was waiting to pounce on me as soon as I got in there. "Where are YOU coming from?!" (I had a big suitcase, I came directly from a business trip) "You're too young to be in here!" (Didn't know how to respond to that one, so the best I could do was "Hey, what are you gonna do?") I got a couple of other questions I think I blocked from my memory, then I have to admit that I hastily tried to hide in my magazine. I know I should be more friendly, but frankly, he hit a nerve with the age comment.

Later, he came out of his scan and tried to argue me out of the fact that I was getting a PET-CT scan. Because I didn't drink barium like he had, he was convinced I was in there for something else. Annoyed again, I just tried a polite, "Well, I think it's just a different type of test.", but he wasn't having that. So I guess he is an expert radiologist now, because he drank some barium.

I know I'm disrespecting my elders and I know he was just trying to be friendly and, yes, I know I'm being a royal bee-otch, but this guy just really annoyed me.

So there. That's off my chest.

While we're talking on the subject of the AARP generation, C has officially learned how to embarass us! We were in a clothes store in NYC and there was an older woman looking at the racks and C pointed and said "Old Lady", "Old Lady". I'm not sure if the woman heard, but D just said "Yeah....Nice Lady." and barreled C and her stroller out of there.

I will save this story for her for when she's incredibly embarassed of us in middle school and high school.

Doomsday

So I went to the New York Academy of Sciences gala last night. One of the scientists who was honored spoke about how there is so much pressure in science now to focus on translational research. In other words, to focus on scientific research that will have direct implications on drug discovery and health care, etc. Yet his point was that, if some of the more fundamental research is ignored, it's a huge loss, even, ultimately, for medical research. At an otherwise, um, rather dull event, this scientist was using this venue to make his point. Pretty passionately I might add.

Jeffrey Sachs also spoke last night about how we are really at the tipping point of catastrophe as far as climate change is concerned and while the climate change bill is hiding behind other "more important" bills in Congress, we are quickly losing time to do anything before it's too late.

This is actually something I've been thinking about lately. The climate change problem, though I am not as well-schooled in it as I should be, competely freaks me out. Part of the reason I don't want to delve too deeply into it is that I'm afraid to know.

And I've thought of how this relates to me and to my disease and to disease in general. Because, I will admit that I've been guilty of thinking: "Why are we worrying about curing diseases, or, for that matter, fixing health care, if the entire planet is doomed?" "Why aren't we aggressively trying to fix THAT problem before all others? Immediately?" And I don't know the answer to that.

I'm sure I'm not the only person to think this. And believe me, I do know why we want to find cures for disease. I feel those reasons more intimately than I ever did before. I want a cure for chordoma and pancreatic cancer and breast cancer and lung cancer and AIDS and leukemia and everything I've ever seen affect someone I know.

I do feel that this bigger picture stuff is being ignored because it's not directly hurting people yet in an obvious way. And by the time it does it will be too late.

I don't think my reuseable grocery bag is going to do much to help in the meantime. So I guess I just have to worry about both long-term and short-term. In the short and long-term.

Whoopsy!

I totally forgot to blog last night. Sorry. I'm sure it was a monumental disappointment for you!

It's weird. I did get back to my hotel late (11!) But I could have squeezed something in if I'd thought of it. I just totally didn't think of it. Oh well.

The good news: I'll do two posts today to make up for this.
The bad news: This counts as one.

Oh please

So, I woke up in New York this morning barely able to move my shoulder. C'mon. Really?

My powers of deduction told me that it was from lifting (with D) C in her stroller up and down the subway stairs. A lot of times it's just easier than finding an elevator (if there is one) and even if you do find an elevator, you have to be able to hold your breath through the rancid urine smell of the elevators (sorry). The smell of stale urine alone could keep me from living in New York. It's rough.

After some Tylenol and moving it around throughout the day the shoulder felt better. I did think this morning though, "Did I really screw this up? Am I going to need to have a flipping shoulder surgery or something now?" I am hoping that by tomorrow it will feel mostly all better, but sometimes a night's sleep is what makes things feel worse.

Sometimes I think it's really not fair to have any additional hassles right now. I feel like I'm owed some really good luck or something. Then I have to remind myself that my condition is in a lot better place than some other peoples', so I AM the lucky one. Everything is relative I guess.

Shoulder aside, we had a good day. Maybe I'll manage to get some pictures up, but not tonight.

I'm easy to impress

Wow. My first remote post from my laptop! I can't believe I managed to do this and was not too lazy. Actually, it was pretty easy.

We made it to New York unscathed. C loved the choo-choos. She still doesn't know there is a choo-choo distinction between a real train and the subway. So that's good.

After we checked in, we just wandered around Times Square for the overstimulation factor. Even on a rainy day it's a mad scene. We went into the Toys R Us (sorry, I don't seem to have a backwards "R" on my keyboard, strange that) in Times Square with the operational ferris wheel. We were sort of regretting that as soon as we got in there. It was scary-busy and if you are the type who avoids malls at the holidays, you might have had a panic attack. We retreated quickly.

Before that I had stopped to get a tea on our way over and this place had a whole convaluted way of making it where they set this whole mixed up brew on top of a container and set a timer. When the times up, they press a button to filter the whole thing and then the guy pours it into your cup. It was so theatrical, but I have to admit that I was impressed. I love this about New York. Even your average place on the corner has to have a gimmick to compete.

We had a really nice dinner at this place in Hell's Kitchen. There was a baby at the table next to us and C enjoyed flirting with him during the dinner. She even ate some stuff.

It's been a nice day and a nice escape. Back with more tomorrow.

Phase 2 Part Deux

....So anyway, let me tell you how I finished off my visit yesterday....

After I was done with my CT scan and tattooage, we decided to walk over to the Proton Therapy center so I could orient myself a bit before I start treatment.

Can I just say first that when you go outside where the entrance to the main hospital is, surrounded by other buildings, it is utter chaos. There is tons of traffic, and construction and detours and people coming and going, and it's just high blood pressure inducing. It seems more heart-attack inducing than relieving.

When we went into the PT center and went up to the waiting room, it was an oasis. It's cheerful. There's a TV, a computer....I think one woman was making jewelry. It was nice. There is a really nice kids area with toys and books and lots of good kid stuff. That was kind of hard to see, but I think that's a whole other post. There were no kids about when we peeked in.

It's not lost on me how lucky I am to be so close to this place, and with insurance that will pay for the treatment. I'm not only getting some of the best treatment in the world, but they are trying to make me comfortable while providing it. It doesn't get much luckier than that. (People should know though that MGH has special grants for people with chordoma from out of town to help pay for lodging and expenses).

Don't worry, I'm not trying to be all Pollyanna here. I know it's not a week in Hawaii, but it's probably as good as it gets for this stuff, I think

Anyway, that about sums up my visit. We are off to NYC tomorrow for the weekend. C is excited about taking a choo choo train. Even a subway is a choo choo for her. It doesn't take much for kids. I loved that she was just thrilled with merely handing out candy on Halloween and seeing "big kids". She would stand on the steps holding some candy in her hand and shout, "Big Kids.....CANDY!" to try to lure them over.

Never fear, I have a laptop. I'll be reporting remotely from New York City and environs. Til then.

Phase 2 Begins

Welp, phase 2 has begun.

I went to MGH for my prep for radiation. I didn't go to the proton therapy center. It was the main radiation oncology center. I won't be receiving my treatment there, but most of the people there were getting treatment for all different types of cancer I imagine.

It was a dose of reality for sure. Some people were very happily chatting. Many seemed to know each other, so I imagine a lot of people are scheduled at around the same time and have gotten to know each other in the waiting room. That was kind of nice. One guy, who was in his late twenties probably, was having his last treatment today. His mom (I presume) was telling everyone and was obviously very happy, proud, relieved, you-name-it. I couldn't help but feel a little happy, proud, relieved for him too.

There were some people there though that looked, well, sick. There was a guy in a wheelchair (40s maybe) and his relative pulled out a pouch and dispensed about 7 or 8 different medications from pill bottles and passed them to him.

Another woman, probably a couple of years younger than me, was wheeled out of some room and sat in the waiting area looking incredibly fatigued. Her clothes and hair looked like she had a much sassier personality than she had the energy to muster.

A nurse came out for me with the two dreaded bottles of barium in hand. Suh-weet. I opted for the straw over the cup and, actually, it wasn't as bad this time. It was grape flavored, but at least they didn't make it purple and pretend it was grape soda. When I told D it was better than the "banana smoothie" variety, he remarked that "everything here is better." in reference to our recent experiences at BI.

Then we went to talk to the radiation oncologist who went over every possible thing that can go wrongm but is highly unlikely to, and then he handed me a pen.

After that I had my setup catscan (I know "setup" is not the official name for this, but the real name escapes me, sorry!) I had to strip from the waste down (with one of those flimsy robes) and they basically poked and pushed me around on the table until they felt they had the right position.

Then I got my "tattoo"! They took little needles (like a sewing needle I imagine) and made four little dots on my stomach and sides with (permanent?) ink, so they'll know how to line me up on the equipment when I start.

It was all a bit odd. Not least of which was some of the small talk these guys make to put me at ease before they see me half naked and stick needles in my stomach. ("Do you feel like you've been here forever?" "What an interesting watch!" "Where do you live?") I do appreciate the effort though. It's better than wondering what they're thinking.

....I'm feeling like this post is a bit long. I'm going to pick up with the rest tomorrow. Ciao.

Shakeup

There was a big shakeup at work today. A reorganization with the specifics not specified. Details to come.

A lot of people were blindsided and are wondering what their futures are.

In a strange way there are some good things about these moments sometimes. They're opportunities for people to come together, vent their common frustrations or fears, and bond. I've experienced these moments before and they can even be liberating sometimes. When there's a possibility you might be relieved of some of your present responsibilities and faced with new ones, it can be kind of exciting.

I don't think I'll be significantly impacted by this (except maybe personally, depending on how it affects some of my friends at work). But still, I found myself talking with friends at the end of the day about my frustrations with my present position and my career. I honestly haven't thought or even been frustrated by that since the summer. Since before all this.

Lately, I feel like I've just been pushing some buttons to make work happen as best I can, but didn't have the time or enery to be frustrated by it or to even glimpse at the bigger picture of my career. Which has been good. So I even surprised myself by venting that frustration tonight.

I think I have to go back to thinking about where I want to be when I'm done with all this. And let go of my frustration about my present situation.

A coworker, who will probably be seriously affected by this shakeup, said today "It's just a job." I really do like when people say that.

Sheryl Crow therapy

D told me about this book he saw that Sheryl Crow wrote about having cancer and it sounded kinda frivolous. Nothing wrong with that, as everyone takes this stuff pretty seriously 99% of the time. But I guess there is some chapter in the book about going shopping to make yourself feel better.

I think I might be doing that a little bit. Or at least it seems like a side effect of all this has been that I feel pretty justified in buying myself stuff. For reference, see eyeglass shopping post.

Don't get me wrong. I haven't gone crazy and bought those leather leggings that are so of-the-moment but so not a sustainable fashion choice. For anyone. But I have been seizing some opportunities to shop.

I feel kind of OK about this. I think there is definitely a lot to be said about feeling more in control of your life when you look a little more put-together. After I had C and none of my clothes fit for months (OK, years) I felt so frumpy and dishevelled and like I was presenting this image that I could not manage to dress myself properly while caring for a baby. Which was mostly true.

But I've felt better lately when I've had something to wear. Something that fits. And I'm even accessorizing more often! So I guess I'm embracing this retail therapy bullsh*t.

Someone saved my life

I don't think you all know how I found out about the chordoma, but for those who do know, sorry for the repetition.

When I was pregnant with C, they did their usual ultrasounds and found a cyst on my ovary. The short of it is that it was totally benign. I ended up having minor surgery for it, but they didn't even remove it. No biggie.

Anyway, in that process I had an MRI. And this growth on my tailbone showed up. At the time, I had an infant, was about to have this other surgery, and was about to go back to work after my maternity leave. So I waited to follow this thing up. Not a smart move in hindsight, but luckily for me, this did not really adversely affect my prognosis 18 months later, when I did follow up. Nevertheless, lesson learned. I will follow any and everything up. And I hope you will do the same.

My point is that, if I hadn't gotten pregnant with C, this whole chain of events would never have been set in motion and I wouldn't be starting my treatments now. Things could have gotten bad before I found out.

So maybe she saved my life.

While I *felt* ready to get pregnant when I did, I wasn't quite ready. But who is, right? One Thursday night I was drinking a stiff caipirinha and the next morning I was faced with the reality that I really shouldn't have coffee, and I was due to go out for drinks with a big group of friends that night so how do I manage that? Oh, and social smoking was finito as well.

Nevertheless, I had a good pregnancy and an amazing delivery and then this little person came home with us. Whoah, we weren't ready for that either! She cried. A LOT. I spent a month struggling to breastfeed her but she wasn't having it. Then I felt guilty and inadequate when I gave up because all the other mommies were. VERY often she would vomit the ENTIRE contents of a bottle on me. (No, not spit up. I'm not exaggerating when I say VOMIT. WHOLE. BOTTLE.). I went to mothers' groups where all the mothers said their babies were "pretty mellow" and C would be screaming in the background.

I think I spent 9+ months preparing for pregnancy and delivery but not for what comes after. Another lesson learned.

Still, let's face it, I loved this kid. Around 2.5 months we took her to the Berkshires for the weekend and she was an angel. At around 4 months she was getting to be smiley and playful. At around 6 months I came home from a business trip and she was starting to sit up and move around and just amaze me. And she continues to do so every day.

Don't get me wrong. Now she's a toddler. I get frustrated that she doesn't want to eat anything but cookies and raviolis. And she's not immune to a good tantrum now and then.

But she is delightful. I'm so incredibly grateful she came along no matter what, but I can't help thinking that maybe she came for a reason. I don't know. But that amazes me too.

The checkbox

I went to get new glasses yesterday. Overall it was pretty fun. I guess it's the best possible medical appointment one can have because it involves shopping in the end.

I was eligible for free lenses and a $150 credit towards frames through my vision insurance. I didn't expect to end up walking out of there $200 poorer, but it happened. Mind you, I did pick the cheapest pair among my favorites (though the salesman annoyingly kept pulling out more pairs as I was trying to narrow it down. And was it a coincidence that he pulled the outrageously expensive pairs out? I think not.) Still, I guess what I ended up with can't quite be called "inexpensive". I feel like I need a countdown clock that ticks down the hours til I lose them. I hope I get a year in at least?

The weird thing was filling out the form before my exam and having to check the "cancer" box under the medical conditions section. I've never had to check any of those boxes. Ever! Those boxes used to freak me out because they'd have things like, "metal implant in brain", "glass eye", "embarassing venereal disease"*. None of those boxes ever, ever felt like they'd apply to me.

I've had sporadic asthma in my life, but I don't usually admit to it on those forms. And in some ways I feel like a cancer fraud because I don't have any cancer symptoms. This still seems very unreal to me because I've been such a "healthy" person my whole life. I've only stayed overnight in a hospital for pregnancy or childbirth-related reasons.

But I guess I shouldn't worry about the fraud part because who would bother to lie on those forms? Except maybe some crazies.

This is also a piece of information that seems unrelated to my reading glasses. Now that I have this blog though, I guess everyone is entitled to know. Maybe I need to call the dentist.



*Can't wait to see what those damn Google ads do with that one.

Pout-snarl

Well, we got our pictures back from the photo session. Overall, I was pleasantly surprised. Considering that C was in a very poor mood and was determined to run away from the camera at all costs, the pictures turned out much better than I expected.

This is one of my favorites though. This is her "I'm annoyed at you." pout-snarl. She's not downright pissed when she does this, she just isn't getting her way and she wants you to know.

I wish we could get away with this expression as adults.

The Plan

Whew. It's been kind of a crazy week, all-told.

Fertility surgery was yesterday. Got the results today. The end result is not quite as bountiful as I'd hoped. It's better than nothing for sure. But, still, there's no reality show full of kids in the works for me (that's actually an upside). It does plant a little seed in my head though. What if I don't have another child?

That's not what I had planned, but, then again, nothing has gone quite as planned this fall. So I guess I have to go back to rolling the dice and seeing what happens.

I'm not much of a life planner to begin with, so maybe I can cope with all the upheavals of this fall better than some. The lack of life planning is actually something I've considered somewhat of a downfall of mine. Sometimes I wish that I was better about setting goals for myself or making life changes more frequently. I've always kind of regretted that I've let myself become too settled at times, waiting for things to change around me.

Well, this disease has sure as hell shaken things up!

I did think it would be nice if got pregnant when C was about 2.5. I was actually planning it based, in part, on the seasons. I thought it probably wouldn't be prudent to have a baby in the middle of the summer, when I would be cooped up indoors too much while it was nice out. Early spring seemed perfect. That thought seems kind of ridiculous to me now.

The baby plan is off the table at the moment. But that's OK. Maybe things will all work out according to some other plan and it might not even be about me. It might be about defining C's life in a particular way.

It's funny how some peoples' lives DO live up exactly to their plans. My aunt once showed me a paper my cousin had written in high school about where she would be in 10 years and, sure enough, she'd accomplished all the goals she'd laid out at age 15 by the time she was 25. That was both kind of spooky and fascinating to me. I knew right then that I wasn't like my cousin.

I'm not sure what to plan right now. A big life change for when this is all done? Maybe. Or maybe this is not a time to plan but to just sit tight and make sure everything is all right first.

I guess I will just try to "be present" as the yogis like to say. Still can't do crow to save my life though.



P.S. Thanks to all of you who have told me you've been reading and enjoying this blog. It means a lot. Don't hesitate to become a follower on here, or to leave a comment. I promise not to bite!

Phase 1=Done

Well, the fertility preservation procedure was a success. The doctor got 21 eggs, which he was quite happy with. At home today, when the Percoset abated, it kinda felt like my insides had been excavated like Mayan ruins. I'm hoping a good "sleep on it" will make tomorrow significantly easier.

I also feel like I got a sneak preview at life with my toddler after my *big* surgery to come. We told C that mommy had a "big booboo" on her tummy, so she has to be gentle. I think that was a little too hard for her to retain (understandably) b/c I did get climbed on regularly and at one point I got a pretty good press-down on the tummy, which didn't feel especially good.

I am still pretty worried about how I can just suspend taking care of her for however many weeks after my surgery. And how that will break my heart in a big way. That is one of the things that bothered me the most when I first heard my diagnosis. Particularly because she has been in this phase of having her rotating favorites. These people (either D, me or my mom) are randomly selected to carry out whatever tasks she assigns and no one else is allowed to help (yes, I admit, we adults are often the serfs on our own land!) I worry that when I can't do much of anything, I will be shut out. I hope she will be over this phase by then.

C and I did have a nice lying-down snuggle on the couch tonight and it was totally even worth enduring Barney for. I hope that is more of the way things will be after the surgery, but my girl is not much of one for lying down. Or even sitting, for that manner. Suspended by one toe from a 10 ft. platform over a pit of open flames and alligators is more her style.

Speaking of alligators, I also discovered by watching Barney that that is where she learned the term "Alligator Pie". It's not even a song, some kid just mentions that term once on the show. She definitely has some kind of an alligator obsession brewing because "Alligators All Around" is the ONLY song she wants to hear on my Ipod. The first few weeks of having it on repeat were surprisingly tolerable, but now I can't take it anymore. Must find something else to hook her on.

Lucky you!

I just discovered that this month is Nablopomo. I am willing to take on this challenge and post an entry every day this month! I don't promise they'll all be insightful or even readable posts, but I do promise that they will all be from me, created with love (as Carla from Top Chef used to say).

I am still working out some of the logistics (getting that laptop set up sooner rather than later, for instance). But, I do have some blogposts swirling around in my head now that I'm just gonna let loose. I think I need to provide some background on the how I found out about my diagnosis, etc.. For those of you who already know some of that detail, apologies in advance.

And I will probably have some non-fertility, non-chordoma, goodies too. Maybe even some photos!

I also know that I skipped November 2nd so I will post twice in one day sometime. That can be the magic bonus day.

For tonight though, no long blogposts, no fertility shots, yes going out for Mexican, probably skipping C's bath, and maybe watching last night's episode of The City.

Tomorrow is my big "retrieval day".

Hasta maniana

Noctomom

Today it felt luxurious to sleep in til 6:30. Really! No early morning bloodwork and ultrasound appt. for me. Aaaaahhhh.

Yesterday I had a 6:30 am appt. and I got there at about 6:25. There were 6-7 women standing outside waiting for the place to open up. Honestly, before that I wasn't sure the place ever closed.

So, we are standing outside and it's a little cold and you can see the staff inside but they haven't opened the doors yet. I felt like maybe we should start of chant of, "We Want Babies! We Want Babies!" That would have been funny I think.

There was actually some chit chat amongst the women standing outside, which was kind of refreshing. Every other time I've been there, everyone is just staring at each other in silence, looking kind of sullen.

I'd had the same ultrasound tech a few days before and she'd been pretty friendly and talkative. Not so much yesterday. The fertility Dr. said he is treating me as if this is my only chance, so he is treating me a lot less conservatively than he would a typical IVF patient. So, yesterday I had 21 of these "follicles" getting bigger. That made me wonder. Maybe the ultrasound tech doesn't have the context and she thinks I want to be Octomom?

For the record, I do not.

I do feel bloated, a little uncomfortable, and kind of pregnant (I know, I know, there's no "kind of" pregnant). And I am ready to be done with evening shots. D is ready too. He is the one giving them to me and it's tougher on him than on me I think.

Last shot is tonight. Go-day is Thursday. Wish us luck!



P.S. I'm sorry for that annoying ad in the middle of the blog. I was fooling around the other day and I've tried to get rid of it but I haven't been successful.

P.P.S. RC, if you are reading, you can send over the $30 fee.

A tad envious

I've heard from some people on the Chordoma listserv, which has been great. It definitely feels really useful to hear from people in a similar position.

Since there are only two places in North America that offer the proton beam radiation treatment (Boston and Loma Linda, California), it seems like a lot of people come to Boston and it's an opportunity for some of them to sightsee and enjoy the city. I have to admit, I'm a tad envious that I'm not in that position. I'm going to be working during my first course of radiation.

Please don't get me wrong, I'm soooooo grateful that I live so near some of the best treatment facilities for this in the world. And the proximity means that I won't have to disrupt my family life too much and/or have to travel far, potentially by myself, for treatment. That's huge.

I guess it's the work thing that's tough. I've had a hard time focusing since my diagnosis. That's to be expected, right? But I worry about getting my focus back. It's been tough for me to feel like work is important this past month. And some work folks have told me that I should focus on my treatment and recovery. But at the same time, the work needs to get done. It doesn't go anywhere. The world can't stop moving b/c I have chordoma.

I also feel like maybe I am at a crossroads in my life. Maybe I need to make a major change and I needed this extra push to do that. I just haven't figured out what that major change is!

The climate at work has been a little bit difficult too. There have been cutbacks, which makes it hard to do the job, which leads to frustration and stress. So, logically, I think I'd rather be out exploring a new city and going to museums while I'm having my treatment than going to work. But I don't think that's gonna happen. I don't think I'll have time to experience many of the "perks" of this disease.

But that's OK. My daughter's routine won't change very much, hopefully. So that's what's most important. And maybe the major change will come to me.

Bag of apples

Did you think that the title of this post was referencing the outcome of a beautiful fall day picking apples?

I warn you now, it is not.

I think I am about halfway through my fertility preservation procedures and I am growing follicles! So I have 8 of these at 12 mm or more and they need to get to 17 mm. Plus there are more! I am wondering if my midsection is going to start to look like a bag of apples. I don't have a trim mid-section to begin with (though maybe that will work in my favor this time around?)

I don't know, but it's a little alarming.

I am beginning to enjoy the efficiency of the fertility place, like my friend said she did after a while. At first it was too much like a baby factory, but now I am enjoying my Wolfgang Puck decaf coffee during my brief wait in the lobby. I still find myself wondering what everyone's story is though.

I'm also trying to eat a little better these days. I don't really know if diet will affect this type of cancer. It seems like it's such a genetic fluke, that treatment is the only thing that affects it. But I figure, a better diet can't hurt. So, I am having my flaxseed and my green tea daily. And I'm trying to cut out the Splenda (wistfully, it's a painful breakup) I am trying to squeeze more vegetables and fruits into my days. I think I was better at that when I was pregnant for some reason. It's a little tough to start all this in Halloween season. A Kit-kat just seems more inviting for dessert than an apple.

At least it's sugar in the Kit-kat rather than Splenda, right?

Avoidance

OK, I had a weird exchange at work today with a colleague I consider myself to be friendly with (not going-to-lunch friendly, but friendly enough).

To protect the innocent I will pick this up mid-conversation so, apologies for the lack of context:

[Comparing me to another colleague] Him: "Well, she's had a rough time of it lately."
Me: "You don't even know." [referencing my own recent rough time]
Him: "Oh, yeah. Yeah, I know about that."
Me {surprised}: "You do?"
Him "Yeah." "Say, what have you been up to, I haven't seen you at my local liquor store lately." [Conversation trails into banality]

So, I'm not sure what to make of this. Does he really know? Or, is he referencing something else entirely that I am unaware of? And, if he does know, wouldn't he acknowledge it? Am I making a bigger deal out of all of this in my head b/c it's been consuming my life for most of the last month? I'm not asking for an Edible Arrangement (though that would be yummy, especially the one with the chocolate-dipped stuff). I'd just like some acknowledgement of the situation like a "Sorry, that sucks." and then I'd be happy to move straight on to the liquor store conversation. Did he avoid saying anything b/c we were in an open area and he was afraid I didn't want others to know?

This leads nicely into the topic du jour, which is a recent lesson I've learned from this experience.

Ready?

Avoidance makes people think you don't care.

Yeah, it seems pretty obvious, right? You're probably thinking, "I know that you big dummy-face!" Here's the thing though....I was an avoider too! And I consider myself a caring person and one who is not totally self-centered. But when dealing with friends or acquaintances whom I knew had experienced some kind of loss, or major hardship or whatever, I was pretty chicken. Part of me was afraid that bringing up a sad topic would make that person sad (or maybe that was my excuse for my lameness) and part of me just couldn't come up with any words in situations like the death of a family member. There really are no words for that. So I could choke out a "I'm so sorry." but I couldn't get much beyond that. And let's face it, it's difficult and awkward to bring up subjects that involve personal pain.

But now I know the secret: avoidance is so much worse! When you haven't acknowledged something major going on in someone's life (crisis, loss of loved one, divorce, illness, whatever), it feels to that person like you don't care or you don't think that major thing is major enough to mention. To that person, it's like you haven't given it any thought. And most of the time, that's the exact opposite to how you feel. So lately I've been thinking of some of my past avoidances and I regret them. Now I see them as missed opportunities.

So, with my present circumstance, I have been really impressed by the people who have gone out of their way just to say something out of the blue. It means a lot, because I know it's not easy to make that phone call not knowing what to expect on the other end. It takes courage I didn't have.

I hope learning this has changed me for good. I hope I am a reformed avoider.

Sooo not-so-bad

Well, I did my first fertility shot on Saturday night. It really wasn't too bad at all.

Some friends who had been down this road came over to coach us through the process, but I think they really supplied more moral support than anything else. It is a little bit like a home chemistry set but with needles. I can't really believe that millions of people do this to have a baby and I can't believe that they trust people to do the administering on their own. Surely there is room for plenty of error here? These are drugs and needles people! But whatev I guess. Plenty of babies come out of it, so it must go just fine most of the time.

Saturday night's shot didn't hurt at all. I was surprised by how much it didn't hurt. Last night's was a little off. Didn't hurt so much going in, but it felt like it might develop into a little bruise later. Still, not a big deal. And I'm not going to be doing this for months and months so who cares about a bruise here and there.

The whole fertility thing is a weird side trip. I feel bad when I go to the fertility place because I feel like everyone is looking at each other thinking, "What's your story?". Except maybe for the lesbian couple. Their story seems pretty obvious. Part of me wants to say, "I'm not actually infertile. It's just cancer!" But then I feel guilty for thinking that. I feel bad that people have to go through so much work to get pregnant and I realize how damn lucky I was to get pregnant on the first try. The universe really is pretty random.

Overall, I think it's so great that people have this option to get pregnant. I'm certainly glad I have this option. It's just that when you go, you do things like blood tests and ultrasounds, so it's all the medical trappings of pregnancy without the pregnancy. And that just kinda bums me out a little bit. But I think I'm getting over it.

I also got a call from the radiation oncologist on Friday asking if I want to participate in a trial looking at the levels of oxygen in chordomas. All it would mean is a couple of extra PET CT scans. I don't know if that means drinking that wretched berium or not. I can eat pretty much anything and I can drink bad wine, but there is something about that stuff that is bloody hard to get down. And two nasty bottles of banana flavored mercury? (I know it's not really mercury, but whatever the heck it is, it's NOT a beverage, so let's not pretend it is by dressing it up as a banana smoothie. I'm too smart for that!) At this point, I welcome the once-dreaded IV with contrast over that. In any case, I will happily do the scans b/c it will mean just one more nugget of data about this disease, so they'll understand it better.

How can I say no to that?

Look at me!

Wow. I'm blogging. Like 50 million other people on my street alone. I feel like I have to start apologizing and putting the disclaimers out there right off the bat. Because I'm already feeling self-conscious about this blog!

I'm starting this to document the next few months at least as I embark on a cancer journey (and all the B.S. that comes with it). Another purpose is to give me something to do while I'm laid up. I imagine those will potentially be the most boring blog posts ever b/c I don't anticipate a lot happening while I lie in bed watching daytime TV, but who knows.

While I'm like 50 million other people with the blogging, I'm like only 300 other people in the U.S. each year in another sense. For background, (and for whomever might be searching for people like themselves) I was diagnosed with chordoma on October 1st. It's a rare form of malignant tumor. Mine is located on the tip of my tailbone.

At the moment I'm pursing "fertility preservation" so that I could have another child down the road. I'm 35 and I already have a 22 month old we'll call "C". I'm starting that process tonight...whoopee! I want to document that too.

November 30th I am starting radiation treatment for 28 days. Then I will "heal up" for a month and will probably have surgery in early February. They'll just cut off my coccyx (OK, get the jokes out of the way) and throw it out. Then several weeks of recovery and a couple more weeks of radiation and then I pray it doesn't come back.

This is a strange place to be in as a 35 year old woman. For one, this doesn't happen to anyone very often, much less to someone my age. And I was also one of those people who never got sick. I am not particularly the saintly, heroic type who gets cancer young and is especially admirable about it all. I'm not the Lifetime movie type. I'm hoping that maybe this will be a transformative experience in a positive way, for both me and for my family. Maybe we WILL move to Costa Rica and run a zipline company (full disclosure: I am afraid of heights and have never been on a zipline aside from the local rec center's, which was probably 20 ft. high max.)

I have a good tolerance for pain. I did have natural childbirth.

So I want to jot down this experience and I guess I'm doing it in the way everyone does it these days. I don't know if I'm supposed to "market" this blog. I don't know yet if I'll care whether or not anyone reads it (or be embarassed if someone does!). I know it won't be a totally typical mommy blog. And I hope it won't be a typical cancer blog. I don't know yet how I'll feel about people I don't know very well knowing intimate details of my life. Maybe, (hopefully?) it will transform into one of those mundane blogs where people post about how much their Iphone has changed their life.

But here goes.


AMG

P.S. For anyone who happens to stumble on this b/c you have chordoma, please do give a shout out.