Shmoctors

Granted, it's not really fair to post that you may have liver failure and not follow up pretty immediately for the 2 people still reading this.



I don't have liver failure. In fact my liver and kidneys are lookin' good. They salute you.



The bad(ish) news is that it's unclear why I have blood in my urine. I have to go to a urologist.



Further badish news (and completely unrelated to EVERYTHING) is that I have gall stones. My PCP seems unalarmed, so that's good. I could have an attack at some point, but hopefully if/when that happens, I'll know what I'm dealing with. It's funny, whenever you take some kind of microscope to me, it seems you're bound to find something.



I kinda freaked last week when I got the ultrasound to see what was going on. It completely took me back to last year around this time, but, strangely, I was more freaked out than for any test I had last fall. I think the prospect that something could be seriously wrong with me again is much more palpable for me than it ever used to be. Maybe I have a little post-chordoma stress disorder.



This post is boring me already. I think that's because I'm getting bored of going to doctors. I guess I had a nice little reprieve from it for a while. Time to return to that.

Merry Liver Failure To You?

I was thinking a while back that my next blog post should be something light and fun. But heck, why should I break with tradition?!

I had a bad fever yesterday. I didn't really have any other symptoms with the fever, so I went to the doctor to be on the safe side. So I give her a urine sample and she says that I have some blood in my urine and, oh yeah, the whites of my eyes look yellow. So, my doctor orders an ultrasound to check out my liver tomorrow.

I'm sort of at a loss as to what to do now. Assuming it's nothing hasn't really been working out for me lately in the mental preparedness department. But, then again, is freaking out and expecting the worst productive at all? Not really. Neither reaction is going to alter the outcome.

Sometimes I just think, "Isn't enough, enough?" But I was thinking about that in the context of Elizabeth Edwards' death. I mean, first she loses a child. Nothing is worse. Then she gets betrayed by her husband. In public. Pretty damn bad. Then she knows she is going to die, and that is something I think one can come to grips with, but how do you do that when you still have school-aged children you're leaving behind? So my chipper take away lesson from her life was "Things can always get worse. Bad stuff can keep darkening your doorstep."

Here's the thing: I don't want to think that way. I want to think positively and try to attract positive energy. I'm not always very good at that, but I guess I just need to keep trying.

So, yeah. I guess this is what a lot of people face in cancer struggles. Waiting for news. Receiving bad news sometimes. Rebounding from that and moving forward. That's all you can do I suppose.

Fertility Part II

...Then I went to get a diagnostic ultrasound ordered by the repro-endo (like my nickname for him? He's actually way-fun.)



Anyway, I showed up the appointment and I'd forgotten my insurance card. Very bright. After some stressful finagling there, I had a serious coughing fit in the office and had to go to the restroom to recover in peace. As I'm on my way I'm thinking, "Today is going really well."



But then I recover and I cross through the lobby again and I find a $10 bill with no logical place or person to return it to. Hmmm. Then I get called in and have the ultrasound. A doctor there comes in and says she's puzzled as to why I'm there. She basically says I have the reproductive health of a 14 year old cheerleader (no, she didn't actually say that). But she says she never would have known about the radiation, and my uterus et. al. looked"gorgeous". (Aside: Why do these doctors keep referring to anatomy and yucky stuff in terms we would normally reserve for People's Sexiest Man Alive?)



I know, I know, this doesn't mean necessarilly that all is hunky dory. More likely, the AMH test is much more revealing than this. But still, I thought....I dunno. After the $10 and then this, I thought, maybe something big will come easily and gracefully to me, like that ten bucks. Maybe I do have some luck left over after my successful surgery.



I see things happening for a reason and little things being reflective of something larger much, much more than I used to.



We shall see.

Fertility Part I

I'm not going to make excuses here for how long it's been since I last blogged (Hmm, that sounds like "How long since your last confession?" when I would usually lie to the priest about how long it had actually been. Yes, in confession.).

So while I'm on a confessional bent, it's been an interesting couple of months. I found out about a month ago that my fertility is probably in the dumper. And boy, it was a blow. Once again, I went into the appointment with the reproductive endocrinologist thinking that everything was probably just fine. Sure, I'd had some pretty heavy duty radiation, but my radiation oncologist didn't expect anything to be affected, and so I just went with that.

Bad idea.

I was quite taken aback. I guess my AMH was .2. Last year (pre-radiation) it was 1.2 (should be .7 or above). That's not so good. And old as I may be, I don't think age could blow things up quite that effectively.

Why I haven't been prepared for the worst these past couple of years, I don't know, but I just haven't. Then when the worst happens, I am completely caught off guard. Then I'm caught off guard by the fact that I'm caught off guard! How crazy is that?

I know I have options. I saved embryos. And there are even options before we get to that point. It just took me some time to get used to the fact that it was unlikely that I was going to conceive naturally. It made me sad. And then there was part of me that thought, "Maybe I'm not going to have another child." And going down that road made me sadder.

I guess there is this category of the "healthy" (interchangeable with "lucky") cancer survivor. (BTW, as everyone is coughing and sneezing around me this season I've had barely a sniffle and the irony does not pass me by.) I've said this before, but as easy (and, I guess, healthy) as it is to slip back into your old life's routines, you're not the same person. You're the post-cancer person. Then, these things crop up like whack-a-moles, but they're whacking you on the head, as opposed to the other way around.

But a week or two passed and I made peace with the post-cancer me and her options and then....

October 1

It's been exactly one year since I was diagnosed with chordoma.

Blog, did I ever tell you about that day? If I did, I risk repeating myself, but I don't know that I did, so I'll risk it.

I went in to see the world-famous orthopedic surgeon about a week after my biopsy. I was absolutely not expecting any bad news whatsoever. I checked in and the waiting room was full of people post-knee surgeries and teen volleyball players hobbling around on crutches. Stuff like that.

I checked in and they'd said over the phone that I'd get an X-ray before seeing the surgeon. The woman at the desk mentioned nothing about the X-ray, so when I asked about it, she paused and said, "Uh, they decided you didn't need that."

You'd think that would have given me some sort of clue. But, no.

We waited a long time. A long time. Finally we went in and Dr. F, the fellow, was friendly as always, but in hindsight he seemed a little nervous. He wasn't making much eye contact.

Finally, world-famous orthopedist came in and sat down, and dropped the bomb. I knew that chordoma was bad because a friend-of-a-friend neurosurgeon had told us about that possibility months ago. And he didn't pretend it was good.

I started crying a little bit. I wasn't bawling, because I really didn't have any frame of reference to know what I was in for. It was a confused sort of crying. And maybe I was crying because it was one of those moments when I felt I should cry. But, don't get me wrong, it came pretty easily. It wasn't the forced crying I did at my grandmother's funeral when I was a little girl. World-famous orthopedist said, "Why didn't you follow this up sooner?" Well, good question. It was a question I wasn't really prepared to answer at that moment. And later, it was a question I sort of resented. D said he thought Dr. F. may have been holding back tears too.

After hearing I could do surgery or radiation or some combination of the two, we stumbled back out into the waiting area to wait to be immediately set up with a catscan. We were again surrounded by the knee surgeries and the broken feet and the gravity of our situation felt completely out of context in that room.

I asked Dana if I could quit my job. He said yes.

It was a long day; it was a hard day. We told my parents. Curious George was on TV in the background while we talked about it all. I didn't sleep at all that night. I might have prayed.

I remember October 1st last year so vividly and it's sort of amazing when I think of all that has happened in the meantime, because now it doesn't really feel like it happened. My life today isn't dissimilar to how it was on September 30th, 2009. I know that I'm amazingly lucky for that.

I didn't always deal with the past year very gracefully. On October 1st 2009, I shut down in some ways. I didn't see work as being important. Often, it just felt like an annoyance while I was trying to juggle medical treatment, fertility preservation and insurance companies. And my brain had just shut off to some stuff. Now though, I feel accountable again. I feel like I can contribute again. I'm out of that fog and I'm participating again.

In some ways, everything that happened feels like the distant past or a dream. I'm back to my life: the good and the bad and the mundane. That's amazing.

I have to keep following up and I know it's not necessarily over. What's nagging at me now though is that I have to give back for being so lucky. I've been busy and I've let life get in the way of that.

But I have to do it.

No pressure

Well, I wrote a big check tonight. I guess it's the biggest one I've ever written in my life. So, that can only mean one thing....we're moving!

I haven't fully managed to muster much enthusiasm about all this. A lot of that is due to the fact that there has been a lot of disappointment and a touch of acrimony (never used that word before!) involved in the buying and selling transactions that have transpired over the past few weeks. I never thought this would be easy, but it certainly could have gone better. We didn't get quite the price we wanted for our place and our negotiation over the new place didn't exactly go swimmingly.

But then again, some people have their homes sit on the market for months right after they've done amazing renovations and we didn't have that. So there IS that. At the same time, we are no Woody Allen, who said once that he's made far more money in real estate than he ever has making movies.

Tonight it occured to me that maybe things really are working as they should. So maybe in a few weeks I can get to a place where I'm excited about all this. And a year from now, I hope real estate stress is a distant memory and the new place feels like home.

Is real estate more stressful than cancer?

No, of course not. It's just a whole different realm of stress. It's not life or death. And it's not utterly terrifying at any point.

But, it is like batting around a mess of your finances like it's a big ball of yarn. You never quite know if you're making the right decision.

And I often think about how where we live will affect C's development for the rest of her life. At this point in our lives, where D and I live is unlikely to cause a dramatic shift in our personalities or our lives, but these are C's formative years, so I hope she makes good friends and enjoys her school and ultimately recalls her childhood as fondly as I recall mine.

God, that last paragraph sounds like such a helicopter parent.

Yeah, no pressure.

Excuses, excuses

Admittedly, I've been the worst blogger EVER lately. Or at least the least productive? I guess life has happened and I just haven't blogged about it. I know that's not really the point of this thing, but as seems to happen to all bloggers, it wasn't really appropriate to write about everything.

I mean, life sure has happened over the past month.

We went to Ireland for a family wedding and vacation. That was great. But, it was still one of those vacations where I felt like I needed a vacation when I returned. I know, your heart is weeping for me. C did so well though. And she made two little friends, one from Liverpool and another from Texas, which was so cute.

Almost as soon as I came back I went to San Diego for work.

When I returned, I was presented with an opportunity and I had to turn it town. It was one of those moments when you're faced with making the right choice for your family. And so that makes it not even much of a choice, really. But I think it was one of the first times I've really had to do that.

Yesterday we had an offer accepted on a house and now we need to sell ours. ! Things running through my mind include buying an orchid for the window seat and dusting the doorframe of the bathroom. And sweeping the basement stairs for maybe the first time ever?

So maybe I'll write more introspective or humorous or interesting posts in September?

2.5

I've seen people do this on blogs and I just couldn't help myself because I am aware every single day how fleeting this time is. So, excuse me or indulge me. Your choice.


C, you are two and a half now (and a few weeks by the time I got this posted).


You are beautiful. I can tell what the current weather is by your hair (straight vs. curly).


You are still constantly moving and you prefer to run just about everywhere. Your run is unique. There is a degree of flailing involved and sometimes it's on tip-toes. Your cheeks still jiggle a little when you run.

You're the toughest girly-girl I know. You love your tutu and twirling around and you can wear high heels far more competently than I can. At the same time, you love climbing and the rough and tumble and you're probably made of rubber because it takes a major booboo for you to even notice. You still can't throw a ball to save your life.


You love animals but are afraid of them at the same time. You love them from a comfortable distance.

You like to say, "Yee haw!" when you put on just about any hat.


You are bossy. You like to tell everybody what to do, but aren't terribly vigilant about following the rules yourself. Though, you will do a lot of things for a cookie or a lollipop.

You hate wearing shoes.

You love your friends. You are always talking about them and saving stuff for them or assigning things to give to them when they're not around. You love to chase them and laugh and laugh.

You usually get the hiccups when you've had a good laugh.

Your favorite foods are: ravioli, berries of any kind, olives, muffins, ice cream, bananas, milk. A lot of the time you'd rather not be bothered to sit down and eat though.

You are constantly talking and singing. Sometimes I'm allowed to sing with you, sometimes not.


You don't say "my buckleup" anymore. But, I love when you say, "I love you anyway too." just like Olivia.


You are the best. Love you.

Small Victories

Anyone still reading? It's been a while.

It's been a busy summer so far I guess. The summer always is and the fleetingness of it bums me out a little bit. I used to say to a couple of friends at work that the summer was almost over, in like, early June, just to prep myself for the reality that it would be over soon. It's not as much of a torturous tease as it was when I was in school, but it's pretty close. Maybe I do need to move to Costa Rica.

Last week I had my first post-op MRI and follow up appt. Luckily (or something) work has been so busy that I didn't really have time to spend worrying about the MRI or the results. This is the first MRI I've had where I did have some cause to be anxious. For the first ones I was really in denial that anything could actually be wrong (that ole "that sh*t happens to other people"mentality). Then, for other MRIs I had, I already knew I had chordoma, so it was like that line from Juno, "I'm already pregnant, so what other kind of shenanigans can I get into?" Not really a cause for concern.

Work was so busy last week though that I didn't really have time to worry. Isn't it weird when you can get more worked up and stressed about something at work than say, your LIFE? I haven't figured that out yet, so I have to chew on that for a bit.

I did my thing and I went to my follow-up and....phew....things were fine. Strangely, I worried more after the appointment. It's the chitchat about the realities of chordoma that wakes me up and makes me take notice. I mean, I should be running out in the street and shaking my sillies out or something, but sometimes these appointments are like a frying pan over the head of "You're not out of the woods yet, sister."

We talked a little bit about the having-another-kid thing again. They said if I do plan to conceive again that I should just dial up the ole C-section, b/c pushing out a baby may not be so good on a fragile pelvic region. It occurred to me later, since I've been thinking about some of this fate and manifest destiny stuff lately, maybe this is why I had such an amazing childbirth experience the first time. Everything worked out incredibly well, in a hospital even, and I don't know if that's all that common these days, but now I'm especially grateful that I had that experience. In some ways that allows me to move on and now just be grateful if I have the opportunity to have a C-section. It will just seem a little strange to schedule a birth and have it be over in the time it takes me to drink an iced coffee. But hey, I'm not complaining.

Deliberate Do-over?

What do you think about deliberate creation?



In other words, do you think you can attract something to your life through sheer will and positive thinking? I've been thinking about this concept lately and I guess, if I had the energy, I could dust off the high school Voltaire and really delve into the fate vs. free will debate. But, there's too much god-damned reality TV to catch up on.



I digress.



Is this completely silly or is there something to it? I've heard it works for some people. I haven't read "The Secret" but I assumed it was hooey and I don't have an Oprah-style inspiration wall (what does she call those things again?) But let's face it, it doesn't look like Oprah is doing too badly.



I've been wondering lately if I need to set more concrete goals for myself. I have not really been one to really take the reigns on my life. I mean, I definitely had something to do with how things have turned out so far, but it's been slightly more like a runaway donkey ride than a trot on a thorougbred.



There's something about a diagnosis of a fatal disease at age 35 (Hey Googlebot: chordoma), that does give me an urge to set up some more explicit goals. It feels like a bit of a do-over sometimes. It makes me want to create more positives out of negatives than I've had a tendency to do. Don't get me wrong, I don't think I'm actively doing that that much yet. But I want to.



I want to be better at a lot of things at work and in my personal life. But maybe at the same time I can also just manifest fantastic destiny. Remember this? I want more of that kind of "luck", if that's what it is.

We're in the midst of a house-hunt at the moment and a couple of places seemed like they would work for us, but they ended up falling through. I haven't felt as much as a twinge of sadness or disappointment about those places (though I am pretty divergent from my mom in that I don't get terribly emotional about real estate or haircuts). More than ever before, I feel like the right place for us will pop up and it will just work. It won't be too hard and it will be more right than any place we've seen before.

That's my intuition. Can I will it to be? Can I do the same for my upcoming MRI and every one thereafter?

I will keep you posted!

Californ-i-a

This is the overdue post on California. That happened way back toward the end of May and here we are almost in mid-June.

This was a brief but much-needed trip to Napa (2 nights) and San Francisco (1 night). The brevity was actually a good point because we left C behind with Grandma and she is just at the age now where I feel she really misses us more. And we miss her. And there's guilt involved, of course. But Grandma and Grandpa staying with her was essentially like Sin City. There was a trip to McDonald's AND Burger King (yes, in the space of 3 days). She watched Shrek on cable (yeah, you heard right, PG!) She stayed up late and her outfits were more mismatched than usual (I saw pictures. Even I know that brown and red don't go together- unless it's a hamburger with ketchup. Hmmm. Maybe the fast food trips had an influence).

Things that were great about the trip:

1. Spending idle time reading and watching aforementioned sappy movie on the airplane. But did they have to show "The Tooth Fairy" both ways? A crime against idle time. At least it made me read more.
2. Strolling around San Francisco on the afternoon/evening of our arrival and not feeling like I have to "see it all". Or any of it, actually.
3. Wine. Good wine.
4. Having uninterrupted conversations with D at meals and generally spending time alone together
5. The food. California food is so precious that it should be sold in a yuppie food-church of some sort. It's beautiful and there's nothing unpure about it. Even the "butcher" we went to had an adorable, gleaming, hand-crank slicer. And the farmers market was a cruel reminder that you can get lovely local produce there before June.

Things that could have gone better:

1. Six+ hours on an airplane isn't what I'd call "comfortable"yet. Even in first class (yes! first class!) There were some squirmy moments. But totally doable.
2. Do not drink wine for the better part of the day before having an 8-course meal that night. Lesson learned.
3. Probably a mistake to visit the winery started by the guy who invented Informercials.
4. It was damn cold for Napa Valley in May. One night I was literally shivering in my summer outfit.
5. I really don't think I learned much more (or maybe any more) than I knew before about wine. But I'm not sure I care.

All in all, a great time. Next time, Sonoma.

More

So, I went to California at the end of last week. (I've heard talk that my house will be looted if I talk about trips in advance on a blog. So there. I'm BACK and the door is locked. OK?) The trip was great and probably worthy of a dedicated blog post, but I don't think I have it in me tonight.

One thing that I found crazy though was that on the way there, on the plane, I watched a Lifetime-calibre feature film that was actually pretty good. OK, not great, but it was all about the issues I last blogged about.

And it starred Brendan Fraser. Don't snort!

I know, I know Brendan Freakin Fraser.

So anyway, Brendy and Harrison Ford (in an inspired, curmudgeonly performance-I imagine it's his true personality) really go at it to come up with a drug to save Brendan's kids. I won't give away the ending, but I bet you can guess what it is. And here's the best part...."Based on a True Story" And Felicity as the mom almost made up for Brendan.

It was just one of those times though when I was hammered by the same topic several times in the space of a few days and it starts to feel like a sign or something.

Despite the dismal nature of that Newsweek article, and the fact that the movie implied that you need about a trillion dollars of venture capital to get cures and treatments going for disease (and that was probably the part of the movie that was realistic), I still feel like The Chordoma Foundation is doing some innovative stuff and I'd like to help in my small way.

For one, it's in my own best interest to help. For two, I've been affected by the people I've read about and met. For three, there is no walk, marathon, yogurt lid, or ribbon to help. At least as far as I know. Because this is not one of those big cancers, it's tough to engage mass attention and support (and I totally get that). It's genuinely up to the community of people directly (and I mean directly) affected to help. And I am better placed to help than some of the people who are not doing as well with this disease.

I am not quite sure where to start. I have some ideas, but am totally new to this. I think it could be fun though.

Thinking thoughts

I have been thinking a lot since the end of my treatment. And it extends beyond thoughts of where my next snack is coming from and why all the Real Housewives are so angry at each other. Really.

First, I've thought about the future of this blog. I've thought about pulling a Costanza and "leaving on a high note" now that my treatment is over and I am cancer-free (ostensibly, for the first time in my life). What do I blog about now?

I am not as clever, witty and skilled as some of the uber-mommy bloggers, and at this point, because of the way this blog started, I don't think I can resort to blogging around pictures of my kid spitting out vegetables-entertaining as that may be. Besides, that's what Facebook is for.

But, the more I thought about it, I realized that I might as well continue to do this as long as it's useful and enjoyable for me. That's the reason why I started this blog, after all. Besides, I realized that this is of a new chapter of my life and it might present its own interesting things to write about. And if they're not interesting, well, I apologize in advance.

*************************************

So I've also been thinking about this interesting video someone on the listserv sent around which is a speech made by the founder of the Chordoma Foundation. If you have about twenty minutes, it's worth a look, but I am too inept to get the link up at the moment in a reasonable timeframe. Email me and I'll send it.

What's interesting to me is that he refers to the industry I work in, academic publishing, and how the current structure of academia and the publishing industry impedes information sharing which stalls the development of treatments and cures for diseases. And here I thought I worked for a pretty noble industry. But in effect, I may be a cog in a machine that is stalling progress on a cure for my own disease!

And then I read this, which also has a Chordoma shout-out.

And I guess I am pretty naive, but this was all news to me. And shocking. I thought that if researchers thought they had a promising treatment or cure for something that might save people's LIVES, someone would roll out the red carpet and pay them a lot of money and nominate them for a Nobel or something. But instead, the system appears to be set up in such a way as to discourage development. So, many smart people are coming up with good ideas for....nothing? OK, maybe publication and tenure in some cases, but those things don't quite compare to a legacy, or saving a child's life, do they?

So that, and Josh's inspiring talk, and the stories I've read and heard about other Chordoma patients just make me feel like I have to do something, even if it's a very small, somewhat insignificant something.

More thoughts on that soon.

Seis de Mayo

Well, I had my last treatment on Thursday. Yes it's true. It was supposed to be on Wednesday, but the ole cyclotron was acting up, so it was postponed by a day. Even though proton radiation is still an advanced cancer treatment, I do think I will be looking back on this 3-story behemoth in the not-too-distant future and it will seem a lot like the days when it took an entire room to house the computer that could power a game of Pong. In other words, a much smaller apparatus will be along very soon.

So, today you get a treat! Pictures! (I totally forgot how to post pictures properly, so I struggled with this one. I am the least tech-savvy blogger I know, I think.)

Here is the cuddly behemoth.

There is no floor under that table, you're kinda just suspended there. Looks like a place where evil aliens would do bad things to you, no? And to be honest, in my recent experience, that has not been so far from the truth. Except that they're people. And they are very nice.

Don't I look a little maniacally happy in this photo? You can tell it's my last day, huh?

Since my last treatment was SUPPOSED to be on Cinco de Mayo, D went wild at the party store to get festive, themed decorations. It was sweet. And I don't know anyone who likes to go to the party store more than he does. But then my treatment was delayed for a day so here I am below with some of the staff at the Proton Center celebrating "Seis de Mayo". They couldn't resist a sombrero.

D also brought a couple of nips of Cuervo so we both did a shot of tequila. I bet that doesn't happen there very often, but I guess you never know.

Then I got to ring "the bell" in commemoration of my last treatment and C helped me as you can see.

I thought I would get choked up and cry due to the catharsis of it all. When I think all the way back to diagnosis and the fertility stuff and everything that has followed, it just feels kinda overwhelming. But in the end, it was just a happy, fun day. And I had another one of those waves of relief that I've had several times during this experience.

What is done?

Yesterday was a tough day. I realized I've been compartmentalizing a lot of this experience and trying to muscle through each hurdle as it comes up with the ultimate goal of getting to my last treatment and putting all this behind me. It's a tactic that has worked well for me, and it's made everything OK. Sometimes I'll think back to one particular thing and think, "God that s*cked, I'm so glad that's over." but in the moment it wasn't so bad. Maybe because I had the end in my sights.

But after talking to the doctors yesterday I was faced with the fact that it's not really over on Wednesday. I still have the possibility of recurrence which affects when and how I try to have another child. Recurrence is not something I've given much thought to (thankfully), but when you don't think about the boogeyman very much, when he DOES pop into your head, he's pretty damn scary.

I was also told that I can't run anymore. I cried. I guess that takes care of my marathon dream. It was something I was looking forward to starting up again this summer. I guess in my uninformed medical opinion, six months after surgery sounded good to me. After he told me that, my running life flashed before my eyes. Don't get me wrong, I've never made my living by running. My fastest mile was probably 7:30 and I never got beyond 9 miles in a go. But it was fun. I had a lot of good races. I'd run in a lot of different places. It's something you can do anywhere, without any equipment and you feel good afterwards.

We talked a bit about the fragility of my pelvis due to the radiation (basically, if I break it, I'm in trouble) and the possibility of cancer in the future resulting from radiation.

Nothing we discussed was a surprise (except maybe the running part), but more of a reminder that there are things I have to look out for and be careful of and fear, to some degree.

I realized this isn't entirely over on Wednesday. My life is changed rather than interrupted.

Phase 4: The Final Countdown

Let's see, let's see, let's see....since I last blogged I've returned to work, started proton treatments again and have survived eight of them so far!

Work has been fine. As good as I am at doing nothing, it is nice to have somewhere purposeful to go each day. It was great to see friends too. Before I left I found it very difficult to focus. It was tough to find anything at work as important as everyone else seemed to think it was at the time. And sometimes I just found it annoying that they thought these things were important. I realize that this is kind of irrational. I was in my own world and that world did not place much importance on the marketing of scientific journals. Now though, I don't have the unknowns floating over my head, distracting me. That helps. It also helps that things were well taken care of while I was gone and it's the end of our fiscal year, so I feel I have a bit of a fresh start.

The return to radiation was another story. This time makes the last round feel like I was getting a hot stone treatment at Canyon Ranch. I knew it would be bad from the planning session and it really does not get much easier as time goes by. The only thing that's easier is that time IS going by, resulting in fewer treatments remaining. Three left. OF COURSE I'm counting.

The staff at the proton center have been extra nice to me this time around. They really are empathetic people, which helps. They always have my music ready and they let me pick a toy for C last week, which was fun. I've been going in the late afternoons this time around. At that time, there seems to be a prostate cancer club in the waiting area. There is a row of guys with bald heads and black socks, sitting in their gowns. They're pretty friendly with each other. I'm a little envious. It must be nice to have some peers there.

Yesterday was a little surreal. There was a boy I've seen a couple of times there, he's probably 9 or 10. He's a little nerdy, a little chubby, very friendly, very happy and he's lost some of his hair. Apparently, he's attending circus school. I didn't know that was available to kids. I thought it was just something you ran off to when you quit regular school at 17. That is, if you can't get into Dunkin Donuts University or the Olive Garden Cooking School in Tuscany (is the latter real? really?) Anyway, he whipped out a unicycle and started riding it around the waiting area. He could do modest tricks and everything. That was a first.

Misplaced anger of the week
My cousin, whom I haven't seen or spoken to in at least 20 years, sent me a prayer shawl knitted by women at her church. I don't know what it is about gifts like that, but I could barely look at it, It makes me resentful when I know I am supposed to be grateful. I know this is irrational (wow, I've been irrational TWICE in this post!). To me, I guess this shawl symbolizes dying and death and something a 90 year old dying person should have. It just felt inappropriate for a 36 year old who is trying to get through this phase of my life. I think some people forget (or don't understand) that so many people get cancer and there are so many different stages and experiences, that it doesn't always mean you're doomed or feverishly trying to pray your way out of doom. In fact, I've learned there's even a movement to stop pouring billions of dollars into trying to eradicate "cancer" and to instead invest that money into better treatment, early diagnosis, and improvement of quality of life for the millions of people living with cancer. We have already invested billions upon billions without a known "cure" so it's an interesting viewpoint. Nevertheless, I fully support both scientific research and prayer. Just not prayer shawls, I guess.

I need to leave some stuff out

Despite the fact that, luckily, I haven't given much thought to the topic I'm about to describe, this post has been ruminating with me for a couple of days now and I feel compelled to write about it and I'm sorry for what I need to omit because, frankly, I probably shouldn't be writing about it on the internet in the first place!

And some of you do know what this situation is all about so you'll get more out of this post.

The other day I met a neighbor whom I never met before. She has three kids and when one of them ran under our tree to see the gnome I bought for C, we introduced ourselves. Her kids had already made the gnome's acquaintance on prior walks. It's funny how kids force you to meet your neighbors. I don't consider myself unfriendly, but I am SO Bostonian in that I generally don't speak to strangers unless spoken to, at least beyond a quick "hi".

So we got to talking and she lives on the next street over. She was talking about who she knew in the neighborhood and I blurted out, against my better judgement, that the only people on her street I knew of were her neighbors directly across the street, who had done a pretty bad thing to us (and to our upstairs neighbor). I shouldn't have told her, but by that point it was too late. She was surprised. She kept saying what "nice people" they were and how she was surprised. Then C and I went back home.

Well, I ran into this neighbor again yesterday and after a couple of pleasantries, I was on my way and then she came running after me. She came to tell me some reasons why the neighbors may have done what they did. And she said "You or I would never have done that, but they may have done it b/c of x, y or z." But here's the thing: even if their reasoning was due to x, y, or z, it just doesn't make what they did NOT wrong. Just because you've had a misfortune in your life, doesn't mean it's OK to spread around that misfortune to some neighbors you've never met before. Does it?

Then I also told this neighbor that I had cancer and what unfortunate timing this had all been because they did this deed to us on the day I came home from the hospital after surgery and I wish they knew that. Again, she was shocked, but we left the conversation with her still telling me they were "good people". Mind you, I never said that they were good or bad people. I merely stated what happened. (OK, I may have said that what they did was ridiculous, but that's all. I swear.)

I guess what irked me about the whole thing is that I don't care if they're good or bad people and if they do have some unfortunate circumstances (which I don't know that they do), I'm sorry for them, but what's irrefutable is that they did the wrong thing and there's really no justification for that, no matter how friendly they might act around the neighborhood nor how many easter bunnies they put out in their yard. I am all for giving people the benefit of the doubt and I'm all for understanding when people have bad days, but do you ever hear "they were having a bad day" as an excuse for a behavior and think, "so am I, but I am an adult and I do have a little self-control?"

One night, many years ago, I was driving home from my parents house and it was a really foggy night and I couldn't see very well and I clipped a car that was parked on the street. For a split second I thought of driving on, but instead I pulled over, walked to the door of the house, rang the doorbell and told the owner of the car what I'd done. Does that make me a good person? No. Was it the right thing to do? Yes. I was just owning up to my responsibility. These neighbors are not being responsible for themselves and that's just annoying.

I shouldn't have pulled out the cancer card. The fact that I had (have?) cancer is irrelevant and our upstairs neighbor (who had a nightmare about this whole situation) didn't deserve this as much as we didn't deserve it. But I do wish these neighbors had given some thought to what they were doing and it made me think about the fact that the people next door might not have it as great as you'd think, so can't we just live and let live for Pete's sake?

And I do take solace in the fact that karma's a bitch. Thanks for listening.

Serendipity

Last Thursday was amazing. Truly. D called in the middle of the day and said that, miraculously, there were tickets available to purchase for the Atoms for Peace show that night. AFP is Thom Yorke's new band and since I am a huge Radiohead fan, I've worshipped him (alongside the masses) for years now. D asked if we should do it and I said "of course we should do it!"

The stars aligned in sort of a ridiculous way:

We each managed to order a ticket on the website (you couldn't order 2 at once) but the seats were right next to each other.

We had no babysitter lined up and my parents were out of town. I emailed the babysitter and she replied immediately and said she'd be happy to watch C.

I was slated to go to a memorial for my friend's grandmother that evening. D had to pick up his car at the mechanic's without my help. We both managed to do these things and get to the show with time to spare.

When we arrived, we discovered that our seats were waaaaaaay up front. Six rows behind the orchestra. Oh, and in the center. D ran into an acquaintance who had ordered tickets on the day they went on sale. She was way in the back.

Everyone stood for the whole show so there wasn't hours of sitting involved.

The show was amazing and the energy was unreal. It reminded me of what it's like when a rock show can be trascendent. I didn't feel like the suburban mom that I am (never mind that I'm watching a rock band of suburban dads. Is Oxford a suburb?) I felt like I did when I was in my twenties, when all I had to worry about was how to get tickets to a show and I was responsible only to myself. I don't want to be there again, but every once in a while, it's nice to go back for a visit.

During the show I thought, "This is the best thing to happen to me this year."

Of course, that's not really true. I think things like the removal of my tumor with clean margins trumps that. Or my uncomplicated recovery. Or the support and kindness I received from family, friends, acquaintances, coworkers and caretakers since my diagnosis. Or my daughter's second birthday.

But if I put all those things aside for a moment, this was a great experience that came out of nowhere. It was unexpected. It wasn't a good outcome from something bad. There was no baggage or struggle. It was just good. All good. And the reason that I thought it was the best thing to happen to me at the time was because it was just that, a pure, unexpected pleasure for which I felt extremely grateful.

While I do count myself among the "lucky" cancer ranks, this was just the kind of lucky thing that hadn't happened to me in quite a while. And I'm ready for more.

Feel free to skip this one and/or not for the squeamish among you

OK, so I've been feeling somewhat compelled to blog about this topic since last Thursday but I haven't been able to because it's, ahem, a sensitive subject. And hugely embarassing. So now you're thinking "Out with it, sounds juicy!"

If this is a truly a good, bad and ugly blog and hopefully one that no one is reading anymore (OK, not true, I do want people to read it, but if they happen to miss this post, I won't mind in the least), then I have to document the ups and downs of this whole experience.

In the weeks following surgery, I was pretty well convinced that the worst of this experience was over. And I've been feeling pretty good for the past couple of weeks and I'm feeling like I'm turning a corner. And on the whole, that was true then and is still true now. But, smack in the middle of all that, there was last Thursday.

I had my CT prep for radiation. Radiation starts back up on the 21st. The first time around wasn't so bad (except for the aftermath) and this time I've only got 11 post-op sessions compared to the 28 of last time. No problem, right?

Ah, but there's a wrinkle.

This time I'm going to be in a face-down position and I will have a catheter inserted where the sun don't shine. And last Thursday we had a practice session of that. And it was plum awful.

I used to wonder a couple of months back why my radiation oncologist told me several (like at least 4 or 5 times) about this catheter situation. I kind of blew it off then, since I was thinking more about the surgery. But now I get it. He told me numerous times to warn me, I think. But I don't think it quite sunk in. Maybe that's a good thing.

When this thing was being inserted it was painful, uncomfortable, embarassing and I felt kinda violated. As violated as one can feel by someone who is in no way violating you but is instead trying to save your life. And only as violated as one can feel during an insurance-approved procedure.

One of the radiologists assisting the doctor was asking me if I was OK and while I was saying yes, I was thinking "I am in no way OK. I have rarely been less OK in my life. OK does not in any way represent my current situation." But I still don't know what the appropriate response was? I knew I was going to survive this, if a little scarred.

But here's the rub, I have to endure this 11 more times b/c they will do this every time I get radiation.

You can be sure that I will be making X's on a calendar as each of those 11 sessions passes.

Maybe writing this down will keep me honest?

OK, admittedly, I've been in a bit of a blogging slump. It seems to be a recent trend among the blogs I read though, so I don't feel too guilty. I guess when you're in this March/April pre real-spring limbo, maybe there's not a whole lot to report?

I've been thinking more lately about what I am eating and my health and how I can improve that. I've mostly gotten over the chocolate fixation of the early post-op days primarily by running out of chocolate and not replenishing it. It's working for me. I had a run in with Starburst jellybeans last week, but that, too, has passed. It was a seasonal dalliance, really.

I'm thinking about my weight, cancer, and the effects of radiation and I want to take more control over my eating habits. I've decided I want to eat less meat and more whole grains and vegetables. I want to eat more natural and organic food and fewer processed foods. And I want to eat less fattening foods. Tyah. I know. It's ambitious.

There was a time when I was younger and was much more vigilant about my diet as regards to trying to control my weight. It was a bit tiring and I'm not sure I want to be 100% back there. The mindset was sort of, "I'll have a dessert wine instead of dessert." Not a bad credo mind you, but it wasn't necessarilly health-driven, if you see what I mean.

So, I'm taking a few steps. I'm selecting a farm share right now. I'm going to try to go to the farmer's market more this summer/fall. I had just half a hamburger the other night. I'm starting out small.

I'd love to get in a good rhythm and lose 10-15 lbs, but I'm also not in a place anymore to hate my body as it is now. It's just not worth it. Cancer does put some of that stuff in perspective. I'm grateful to have a functioning body, even if I don't look good in a bathing suit and even if my naked butt still kinda looks like Frankenstein (I've nicknamed it "Franken-butt"). I think cancer can transform past disatisfaction with your body into a reverence and a respect. When your body is working properly, it's a beautiful thing, and this has reminded me of that. So maybe that will help me get onto the right path.

Still, I'm going to have to go back to my primary care physician this summer and I don't think my "baby weight" excuse is going to hold up anymore. Especially since the "baby" will be 2.5 by then.

On the upside though, I realized the other day that I haven't had a diet soda since this all started back in October. Some things are really easy to eliminate. If only it was all that easy.

Being 2 time

It's been a while since I've blogged and I have absolutely no excuses. Last week I was feeling kinda stalled on progress. I had a couple of rough pain bouts that kinda came out of nowhere. And I guess in comparison to all the progress I'd made early on, it was a little frustrating.

The past few days though, I feel like things are moving in the right direction. The pain has been in check and I've been doing more, little by little. And how could I not feel better when the weather turned into amazingness?!

It's been lucky I've been feeling better too, because C has had some genuine 2 year old moments over the past week. I guess what I said before about her holding off on being truly 2 is expiring. She's given me my time and now she's ready for some good old fashioned power struggles! The tantrum is usually so irrational that it's not always terribly frustrating though. Sometimes, it's even kind of funny (I know, I know, I'm supposed to validate, not laugh!) Maybe I say that because there haven't been that many yet. I'll report back on that later. And thank god the meltdowns haven't been in public! She is a good talker, so usually when she is melting down about something, she can't express what she wants because she doesn't actually want ANYTHING, except to get a good cry out of her system.

Fortunately, another thing I've discovered is that 2 year olds don't hold grudges. One minute she can be doing a foot-stomp of fury and the next she will be sweetly thanking me for something. She can be as full of love and affection as fury and I love that. This kid adores her mom, her dad, her grandma and any other kid who happens to come along. She is at times a little aggressively affectionate with other kids, but, hey, it's better than biting them.

What big teeth you have, gift horsie

Some people have told me that having cancer will make me a better person. Lance Armstrong said so too (though, to be fair, not about me). I'm not quite convinced yet. I haven't seen the signs of my betterment, but I am looking out for the signs and I'll let you know when it's time to congratulate me.


Since I've promised to be honest however, I do have to expose one of my poorer qualities which has reared its ugly head lately. I am really bad at receiving gifts from people I do not know. In fact, I often resent it. And in some ways there have been a couple of strange gifting moments through this cancer thing and I am not always terribly graceful about it.

You're thinking, "you ungrateful b*tch". I know! I couldn't agree more. It's just a feeling that takes over.

You may also ask, "Why are you receiving gifts from people you don't know?" I don't know! But I'll attempt to explain.

Some former coworkers of my mom's sent me a fancy Edible Arrangement. Yesterday my father brought me a gift from someone he chats with at Dunkin Donuts. It was a music box with stationary inside. My father doesn't know the name of the gifter. I immediately thought, "Yard sale pile." when I should have been thinking "what a sweet gesture!". Don't get me wrong, I get it. People who are friendly with my parents want to honor them by doing something nice for me. I just feel like it's a bit of misdirected altruism. Why not send the money used to purchase the music box to Haiti? Maybe she's already made her donation to Haiti and she just wants to brighten the day of the cancer patient. I dunno, but I just end up feeling a little weird and obliged.

As if I'm the good deed fairy who should dictate what kinds of good deeds others should do based on all of the ones I'm running around doing. To the contrary. I haven't changed a stranger's tire or made my neighbors brownies in....oh.... I dunno...ever.

I've gotten some really thoughtful gifts and food and visits and other gestures from friends and family and that outpouring has been overwhelming and sooo appreciated by me. From more distant friends and acquaintances, I've gotten cards and emails and that has been really touching and, I think, the most appropriate gesture from them. Just the fact that these people have taken the time out to come up with something to say, write a note, track down my address and send it in the mail means a LOT.

My aunt from Europe sent a card and $100. That too seemed a little weird. Again, very thoughtful and maybe she feels a little powerless about how she can help from 6000 miles away. but the evil part of me just thought, "Happy Cancer, here's $100 to help you celebrate!" But, let's face it, while I'm 36 and in no way destitute, who can't use $100?

So we've already been over the fact that I'm crap with thank you notes. Let's just handshake on it: if you don't know me, don't gift me. Send some cash to Haiti or yield in a rotary and we'll call it good.

Arriving

Time to get back on the blogwagon since there has been much progress this past week. The stitches came out on Wednesday. Ahhh. As usual, the process of removing them was more painful for D than it was for me, but he opted to sit behind the curtain which was the right choice for all involved. Having the stitches out felt like almost as much of a relief as getting the drain out. Not quite as great, but still pretty great.

The surgeon also said I can do some limited sitting this month. More progress! I tried it out on the couch when I got home from the appointment. Not feeling it yet. It just feels uncomfortable and since the predictable side-lying feels better, I usually default back to it. I'm waiting patiently for sitting to click.

In the meantime though, I've been out for a couple of short walks. We went for a brief visit to some friends yesterday and C was excited that I was coming along in the car. I was touched that she'd missed me in the car. I kinda feel like I'm slooooowly getting back in the game again. For Pete's sake, I wore underwear yesterday! I know, I know, I'd better slow down.

Helping matters is the promise of spring. I know it's cliche, but nothing helps my mental state like sunshine, longer days, and not having to wear socks. Add to that, the idea that cold and flu season is waning, so C is less likely to get sick. All these make for happier times, which seems like a good time to rejoin civilization. Neither spring nor I have arrived yet, but we're working on it.

What I miss while [not] sitting around

OK, I never got around to blogging this weekend. It wasn't that I was suddenly tremendously busy or anything. (Tyah) I think part of it had to do with the fact that I recently got into the show "Nurse Jackie" on demand and I've watched almost the whole season in a short amount of time. The show's a little far-fetched, but it's good. I love Dr. O'Hara on the show. I've known my fair share of Brits in real life and she is about as realistic a Brit as it gets in TV/movies. She is the anti Hugh Grant, in the best sense (and I even like Hugh Grant).

I haven't watched a TV drama in succession in a while, so between this and Mad Men, I am catching up with what everyone is talking about. So that's cool.

I'm happy that I'm building up more strength and getting better, but being unable to sit does hold one back a bit. Here is what I'm missing while I'm staying on top of mordant television drama:

In no particular order:

• Sitting around the dinner table with my family (or anyone for that matter, but especially them)
• Drinking a fancy cocktail in a bar
• Eating in a restaurant
• Going pretty much anywhere (I especially miss being able to go to fun places with my daughter on the weekends)
• Exercising (I wasn't doing much of that pre-surgery, but now that I can't really do much, I am craving that feeling you have after you've had a good workout. It's been too long.)
• Being able to pick up C and sit down on the floor to play with her, especially when she asks me to.
• Seeing friends at work (I don't miss the stress or frustrations of work, but I do miss seeing friends and colleagues on a daily basis, and having a sense of purpose.)
• Wearing clothes that are not interchangeable with pajamas. Specifically jeans. And shoes. And I miss wearing underwear!
• Driving (but not that much)
• More fresh air

So a lot of these things will come back soon and I will seriously appreciate them when they do. I went to Walgreen's this weekend, so that was something. And in the meantime I will try to appreciate having downtime to myself. Somehow, I am still not finding time to write thank you notes to people. Appalling, no? If you are due a Thank You, consider this a holding note. Or, as my insurance company would say, "I acknowledge receipt of your act of thoughtfulness and generosity and it is currently under review. You will be contacted within 14 days with notice of gratitude."

Boredom, interrupted

Just as boredom was seriously setting in, yesterday was pretty busy.

We had an investigator visit in the morning (loooong story unrelated to my surgery) and then we went to the orthopaedic surgeon. That went well. I was pleased to hear that I wasn't overdoing it on the pain meds. It sounds like I won't be able to do any serious exercise for a while, since I guess the radiation weakens the spine a bit. The surgeon said I have to see how I feel. I can't believe I was doing triathlons (OK, I only got up to Olympic distance, but still) 6 years ago. Sometimes, when I think about how far I am from that level of fitness, I want to cry. Sure, laziness and mommyhood largely contributed to the devolution of my fitness, but I feel like I'm so so far behind now. I do have this goal in the back of my head to do a marathon by the time I turn 40. I only want to do it once, mind you, but I think I want to do it. If you're interested in joining me, let me know!

For the meantime, I guess walking can be my friend and I am lucky to be able to walk, so there's that.

Oh, and it turns out that what I had is called a chondroid chordoma, which is even rarer than a regular one. It's not better or worse, it just had cartilage in it. Still, it is astounding to me how this is so rare among rare.

And we learned that the plastic surgeon will tell me when I can sit down again. When I see him on Wednesday to have my stitches removed, I guess maybe he'll let me know.

And my friend S came to visit last night, so that was fun.

I'm going to need a snowed-in weekend to recover from the excitement. And I will spend some of that time blogging about why I'm bored and what I miss. I know, I know, you're on the edge of your seat waiting to hear about what bores me!

My Frenemies

Something I've learned during this rehabilitation process is that one probably shouldn't be eating with the same gusto as an active, healthy person. And by active, I just mean: gets out of bed and goes to work. Sure, they say it's good for healing to have a healthy appetite, but let's face it, if you're eating and not moving around very much, you're gonna get fat. So while I do get up and shuffle around the house, I am still not Action Jackson at this point. And sure, at times I can't seem to put away the same size meals that I would normally be able to (thank goodness), but there seems to be a problem emerging. And that problem is called chocolate.

I am sorry to embody a female stereotype. And I hate to sound like a Cathy comic. But for no good reason, I need chocolate. Lindt ball, Hershey's kiss, Ghiradelli Square, Russell Stover; they are at my disposal ALL DAY LONG. Maybe part of the reason I can't resist these frenemies is because I am lying around like Cleopatra a good part of the day and feeling entitled. Oh, and there's nothing like cancer to make you feel entitled. And maybe part of it is that I've had next to no alcohol since before my surgery (I'm just starting to slowly get back on that wagon) so I was devoid of one vice and perhaps I felt like replacing it with another? I don't know. I just know that it's getting to be a problem. It requires monitoring. Even three Lindt balls is A LOT (read the bag). Do I replace one Lindt ball with a Girl Scout cookie? And why do five Hershey's kisses seem so much more innocent than a Lindt ball in my head? I try to make sure things are out of sight as much as possible, but who are we kidding, I know where to find them..

It needs to slow down. Maybe the same kind of weaning process I'm trying with my pain meds. I notice that the latest quitting drug for smokers let's you smoke the first week, so maybe something like that. Right after the next Lindt ball.

Free-er

Yesterday I went to the plastic surgeon for follow-up. It was my first foray outdoors since I came home from the hospital. When I went outside I thought I would have that kind of woozy, overstimulated feeling, since it was only the second time I'd been outside this month. Luckily no, it felt pretty normal.

We reclined the front seat and I rode lying down on my side in D's car. Kinda awkward. Then I waddled slowly to the surgeon's office. I had just taken my pain meds, which hadn't quite kicked in, so the walk to his office wasn't too comfortable. The walk back to the car was muuuuuch better. When we got to the office, I told the receptionist my name and she said, "You're all set, have a seat." I thought. "Well, not exactly." Instead, I stood in the reception area and kinda leaned against a wall. I think I looked sufficiently pathetic for them to take pity on me because they got me into an exam room where I could lie down after about 10 minutes.

It was time to bid farewell to the friend I brought home from the hospital: the wound drain. I had two of these suckers during my stay in the hospital and I was required to go home with one as a souvenir. It wasn't much of a burden. It was more of a nuisance than anything else and just kinda gross to squeamish types like me. But oh man, I was soooo happy to have that thing out. I was a broken record afterwards, telling D over and over how glad I was to have the bloody thing (literally) gone. It was just one more step toward freedom. So I've officially got no more foreign objects attached to me. Nice.

Valentine's reality

Valentine's Day. I know it pisses a lot of people off. I've never been particularly offended by it though. even when I was single (which I was for the majority of my life). There were certainly days I lamented being single, but I don't think Valentine's day was one that particularly bugged me. It just seemed silly to get hot and bothered about it since it's such an obviously made-up holiday. And I love hearts and chocolate, so I could never muster much resentment towards them.



I think I've been worse about Valentine's Day since I've been in a relationship. I try not to put too many expectations on it, but I admit that I get caught up in the silliness sometimes. At least D and I are committed to not going out to dinner on V-day and as much as I love flowers, I've never been into the long-stemmed red roses thing. Still, I've had expectations.



This year, Valentine's Day feels totally different to me. It's not about expectations of romance for me this year. It's about what D has gone through and has to go through during and after my surgery and how much that means to me. Caretaking is not easy. He claims that he doesn't mind, but there are uncomfortable moments and overly frank conversations every day. There is not much romantic mystery and allure to caretaking for someone who's had surgery. Caretaking is love in its most real, stripped down form.

For some reason, it makes me think of reality TV. You'll never see this kind of stuff on The Bachelor. And, granted, I recognize that that show is supposedly more about courtship than relationship and everyone knows that it's full of hooey. Still, just once I'd like to see The Bachelor change one date's wound dressing and accompany another date to chemo. Romance isn't all that a lasting relationship is built on, but if you were visiting from Mars and learning about humanity from reality TV, that's what you'd think,

This year, Valentine's day is about bringing me meals and laxatives, checking my wound, giving me shots in the stomach (yep, they're baaaaaack), making sure I'm hydrated and that I'm not overdoing it or underdoing it. It's about sleeping in separate beds, but staying together. It's about love, not in a wine and roses kind of a way, but in a hard work kind of way. And I don't need anything else.

Home

I got home on Tuesday afternoon. After a long, slow-speed ambulance ride (no alarms) during which the guy riding in back with me was coughing and sniffeling while I tried to dive under my pillow to avoid getting whatever he had (I was on the verge of suggesting that he wear a mask for such situations, i.e transporting people with chronic conditions, but I wussed out.) I finally made it home. Now, I can tell you that I'm very frequently happy to be home. Probably even on a daily basis. But this was different. It was delicious. The smell of home when I got inside was like a huge hug. It smelled human rather than sterile.

I had pushed my limits on Tuesday at the hospital by doing some walking for the Physical Therapist AND taking a shower, so I went straight to my own bed while they were building my special sand/wind/air-blowing bed in the living room. I guess it literally is a $30-$50k bed. I'll call it the money bed.

Too bad I won't get a chance to show it off on MTV Cribs. I could say, "This is where the healing happens." It will probably be a miracle if C doesn't break it. Then we'll have to get a second mortgage so we can buy an overpriced air mattress we soon won't need.



When C got home from school, it was clear that she really had missed me and was happy to have me home. That felt really good. For a toddler, she is doing a pretty good job of understanding some of this and being gentle with me. We've explained the whole boo-boo/hospital stay thing to her as best as we can and luckily she hasn't body-slammed me yet. She spends a lot of time bringing things over to me and piling them up on the money bed. So at any given time I could have 5 stuffed animals, 4 books, several legos, and a few Mrs. Potato Head accessories piled on top of me. I even get Cheerios hand-fed to me sometimes. I never had access to such luxuries in the hospital. It's great.

On my way

This will hopefully be my sixth and last night at the hospital. I've come a loooong way even just today. I was just told this morning that I could potentially leave to go home today, but I didn't feel physically ready for that at the time and my session with the physical therapist this morning bore out those instincts. My blood pressure plunged and I was on the precipice of passing out again. (Oh yeah, I forgot to mention that I passed out on my first attempt to get out of bed on Saturday. After being horizontal for three days and not being able to even sit up, standing can obviously be a challenge.) I kept working on getting up and about this afternoon though, and I am starting to feel a little less like I'm in my nineties. I feel ready. I was told today that there are only two types of patients: those that want to leave early and those that want to stay forever. I have to respectfully disagree and maintain that there IS an in-between. I don't want to overstay my welcome. I have a two year old at home, whom I miss A LOT. I just don't want to feel physically shaky as I walk out the door.

There has certainly been some unpleasantness about recuperating. Needles and tubes coming in and out of me is not my fave. I won't go into all the deets. I don't think I was quite prepared for the worst, but that is probably for the best. And there are some things that went better than expected. The pain, for instance, is much more manageable than I'd anticipated.

I did have a self-pity moment today though when I was trying to clean myself up in bed and D was trying to help me and I just felt so gray and unattractive and I felt bad that he's been present for so many "look-away" moments over the past few days. I know that this is what a marriage is truly about. I know that me feeling this way is kinda superficial. He thought I was being crazy. I just felt bad that he was seeing me like this while we are in our 30s, when we are supposed to be young, vibrant and attractive people. I know I'll get back there, I just had a moment.

There have been many amazing things this week though, no doubt. I probably don't have to tell you that the nurses on the ground are incredible. I had favorites of course. They brought different things to the table. One totally coddled me the day after my surgery. She felt like a mom except that half the time I couldn't understand her Ethiopian accent. Nevertheless, we would compare stories about our daughters. She was always smiling and I felt adequately spoiled when I needed it most. Another fave was young and compassionate and knowledgeable while also just being fun to gossip with. She washed my hair with something called a porkchop. Yet another was a fave because she was completely ambitious, trying to do as much for me as she possibly could in the time she had. And she did it efficiently and sympathetically. Needless to say, I am in awe.

So, in some ways I'll look back fondly on this week as a time when I was lucky enough to have the best surgeons in the world perform surgery to save my life, doctors who put in long hours to attend to me, awe-inspiring nurses and ,of course, the outreach of support, prayers, and good wishes of so many people I know and love. It really made me feel loved. Oh, and also, the crazy inflatable bed with sand in it. I expect in my memories some of the tougher stuff will fade away.

Oh, one last thing I liked was the hospital menu. Not the food itself mind you. I just liked how most things were listed as they were: "Stuffed Peppers", "Hamburger with Cheese", while other things were really exuberantly pitched: "Turkey Gravy-The Best!" (the Beef Gravy did not get this billing) "Don't Forget the Parmesan if your Diet Allows!" Some condiments and things were in a category called "And, Etc." The redundancy of that category heading really kinda bothered me.

Next post will be from HOME.

The Herds

If you've ever spent any time in a teaching hospital, you might know what I'm talking about when I refer to "The Herds". They are the swarms of doctors that come by to see me in the morning. Usually one resident or fellow wakes me up at about 6 or 7 AM to check in on me. He or she usually asks the requisite questions and takes a quick look at my wound (butt). It's a strange wakeup call.

After that first wakeup, I may or may not fall back asleep, but I can be sure to expect a flurry of similar visits. At one point the orthopedic posse will come by (can I still say "posse" in 2010?). This can be anywhere from 5-7 people standing around my bed looking at my butt and will often contain the resident or fellow who already checked on me earlier in the morning. I guess they can't resist a second look!


Dr. K is one of my favorite residents. She is young, probably late 20s/early 30s. You can tell she has her act together. She looks like she was the captain of the field hockey team as an undergrad. I appreciate the fact that she can make a joke or some light conversation here and there. It's nice to have someone to mitigate the social awkwardness Sometimes the herds just show up and start off by just staring at me.


Also in this group is Dr. F. He has special significance because he was the fellow working with the doctor who diagnosed me back in October. Then at my admittance day on Monday, he popped up again because he had rotated over to MGH to work under my surgeon. I thought this was a somewhat amazing coincidence. I'd spoken with him since before my biopsy in September and he was one of only 4 of us present at my diagnosis (D. said he thought Dr. F. got choked up when I cried upon hearing my diagnosis). Now he'd coincidentally "followed" me over to MGH just in time to be present at my surgery. I like him. He has a surprising Southern accent and an approachable, human manner.


Then there's the Plastic Surgery crew. The Plastic Surgeon did a lot of the heavy lifting in the surgery. He is not a plastic surgeon of the Dr. 90210 variety. He specializes in cases like mine: people who have had radiation. His entourage uses words like "beautiful" to refer to my wound. Don't get me wrong; I'd rather hear that than "Yikes!" or "Good God!" when someone is looking at my buttocks. Still, it always strikes me as a strange adjective for a wound that is healing. Someone needs to come up with an adjective that means "healing well".


The head surgeons have each come by once on their own. I don't think either of them have looked at the wound. It is more of a courtesy thing. More of a quick "How you doin'?" than a "How are you currently feeling?"


It's funny to be one of all these doctors' little guinea pigs, and I've abandoned all modesty, about my butt at least. They are so darn earnest and I have to love them for it. It makes it easier to moon them before breakfast each morning.

The Hospital Chronicles

Wow, so much has happened since the last time I blogged, (only about 3 days ago) that I don't know where to begin.

First, to update you, I am here with my laptop at MGH on a slow Saturday night. My surgery went well on Wednesday. They removed the coccyx with the tumor and achieved what they call "clean margins". That means that they got all of the malignant cells while trying to spare as much of the healthy tissue as they could, to make recovery easier.

I'll start off with surgery day. We waited around for a while in the morning and then they brought me in. I've been a regular at the hospital for months now, but the OR area is certainly the "no f-ing around" part of the hospital. It was a little scary. It makes it seem like the rest of the hospital is Candyland. I think you could spray the whole OR area down with an industrial hose and it wouldn't make much difference. Yes, I guess that's probably the point.

A bunch of people involved in the surgery came up to introduce themselves. The anesthesia resident bungled the insertion of my first IV while her superior was watching. He tried to distract me from that horror by making silly jokes and small talk while at the same time advising her on what to do differently without taking over. He was good.

They wheeled me into the OR and my memory kind of ends there, thankfully. Afterwards, I spent about 4 hours in recovery, falling asleep on and off and just dying to see my husband. It was just too long to be away from him after a surgery like that. I wanted to cry from relief when I finally saw him. I think he did too.

I resembled an octupus (and still do for the most part) with tubes instead of tentacles. Most of these were snuck into me in the OR, but I just tried to stay still and not disrupt them afterwardsh. That was pretty much my job actually. On the first night, I just tried to stay laying on my side, but I didn't do a god job notifying the nurse in the middle of the night when I needed help to turn over. As a result, the most uncomfortable part of the first night was my poor bottom leg, which was hanging on by a thread after a night of being crushed by the top leg. I learned from that mistake and I'm speaking up a lot more. A LOT MORE

More chronicles on the days since to come

Phase III

Today is the day. I've gotta keep it brief so I am not late to sit in a waiting room.

We did admittance stuff on Monday and met with the surgeon. It actually made us both feel better. Seeing the tailbone to scale on a skeleton reassured me that it is pretty small and seems pretty useless. The surgery should only be about 4 hours too, as opposed to the 6-8 we'd been told earlier. It sounds like the aftermath will be pretty messy/painful, but so long as there are no complications, I will be thankful.

On the downside, C is sick. I hate being away from her when she's sick. She will be well taken care of I'm sure, but I'd much prefer to be the one taking care of her. Hopefully I haven't contracted this nasty cough/cold already, to share around the hospital.

Thanks for your good wishes and positive vibes. It means a lot.

The Torture Tube

Update: The coldsore is subsiding. I did switch up my skin care regimen though (OK, the word "regimen" cannot be taken too seriously here) and my face kinda freaked out on me. I caught myself in the mirror at Old Navy today and it looked like someone had splashed acid on my face. I think I'll return to the old "regimen".

My burn is almost fully recovered. Last Friday at work, I realized at some point that I hadn't been uncomfortable all day. Rolaids doesn't spell relief, but my butt does. It is weird when relief comes gradually and you have to think about it to notice it. Relief is usually more of a sudden feeling, like when you've really had to pee and you make it to the bathroom in time, Realizing that you've gradually reached a state of "relief" is something else entirely. Let me tell you though, I've enjoyed it. It's great to have an almost-normal butt back. The bitter irony here is that it will probably be in perfect shape as they sharpen their knives to slice and dice it on Wednesday.

Yes, this coming Wednesday is my surgery. I can't quite believe it. But the preparations are underway. Yesterday was my last day of work and I went for a CT scan and an MRI in the afternoon. I was actually supposed to have two MRIs yesterday. For good reason, that did not happen.

I had my CT scan first. Not a problem. I had to down a keg cup of Barium (I'm getting good at it-only gagged once). They put in the IV, the scan was quick, whatever.

Then while I was waiting for the MRIs, the tech came out and sat down next to me and essentially said, "This is crazy." She said they shouldn't have scheduled two MRIs in one day, it's too much for anyone. It's too long a period of of time to lie still and with the patients she's seen do it, they've gotten bad images on the second scan b/c the patients have moved. Of course I realize she's right. I hate MRIs to begin with, so I know that if I had two back to back, I'd be squeezing the emergency alarm and screaming for my mommy.

Yesterday's first MRI only confirmed this. Five minutes into it, I was smugly thinking, "Oh I am such a pro at this, I've gotten so zen." 25 minutes in I was thinking "F-ck, F-ck, f-ckety, f-ck!!!!" I managed to focus and get through it, but it was loooooong and while I think I've overcome most of the claustrophobia by closing my eyes, it generally makes me feel trapped and tortured.

She scheduled the second one for today. They were running a hour behind and I had to miss a party to go. Luckily though, today went better for some reason. I did wonder while I was in the tube if it could be a very expensive form of torture. If they did this for 8 hours a day to a terrorist at GITMO, terrorism might become passe.

So, yes, medical community, don't schedule two of these in one day for anybody. And don't throw a CT scan on top of it like a cherry.

Pretend you don't see it

I haven't even looked in the mirror yet, but I have a throbbing coldsore.

Delightful, no? Last night, I woke up (well, I think C woke me up) and I couldn't get back to sleep because I went down a stress/guilt spiral over what I haven't accomplished at work over the past few months alternating with a comparatively less stressful think about what state I will be in after surgery.

So when I got to my desk this morning I could literally feel this stress-induced coldsore emerge. I wish I was one of those people who loses weight when they're stressed. Can I please have stress symptoms that will make me more, rather than less, attractive?

I have to get a lot sorted before I finish up work this week and it's pretty daunting. Oy.

Buried beneath this is the fact that I have to revisit a New York Times expose on radiation overdoses. I read the first of about ten pages of the article, got pretty horrified and closed it. I'll get to that later I guess. I think it's important to read.

Hopefully, by my last day of work this Friday, this cold sore and its causes will have subsided.

Go away Cupid

Well, the molting process continues and I'm slooooooowly getting more comfortable. I would say that I'm improving each day at a glacial pace, but glaciers are moving pretty fast these days what with global warming. Maybe I'm improving at the pace of a RMV line?

Last week, I saw the Valentine's stuff in the stores and it freaked me out a little. It's not because I don't have a dinner reservation (we never eat out on V-day anyway and we've had some great meals at home over the years-some of which I've even cooked!) No, I was freaked because V-day will be a week and a half after my surgery (on February 3rd) which means my surgery is coming up! Soon!

I am a little bit nervous about this. As I said before, I've never had major surgery. We met with the nurse at MGH last week to go over what to expect. D is more nervous about this stuff than I am and wants to have a handle on everything going into it. Here are some things that I am a tad nervous about:

Pain Management: Will I wake up after surgery in a fog of intense pain? Also, I am not sure how good I'll be at administering my own pain meds. He told us the best policy is to "stay ahead of the pain" before it gets out of hand, but in my everyday life, I am typically WAY behind the pain and by the time it's wrapping up I sometimes think "I guess I could have taken a Tylenol for that." I am getting on board with the drugs though. They made the biopsy so easy. I wasn't knocked out, but I was on some cocktail of pain meds and anti-anxiety drugs that made me pleased as punch to have a large needle inserted into my butt and beyond while people milled around in Star Trek-like getups of different colors (no, I wasn't hallucinating that) In any event, I have to be on top of this pain management stuff while somehow not getting addicted to pain meds. I hope that is not as tricky as it sounds.

IVs=hate them: Don't get me wrong, I am getting plenty used to them since I've had them a lot for the CT scans and MRIs but they still make me squirm. I had an overnight stay in the hospital a couple of weeks before I had C and they made me wear one which made me even more determined not to have one when I gave birth. Yes, I'd rather have natural childbirth than an IV. Which brings me to another thing he told us about....

Arterial Line: Sounds worse than an IV. He didn't try to sugar-coat it too much either, he just said they'd give me drugs before they put it in.

My Butt and What Will Be Left of It: I think this molting process is just a warmup for what I'll have behind me post-surgery.

I also wonder if I'll have a roommate. They also said I will get up and about soon. I hope that goes OK.

I am worried about being away from C and also her being a little freaked by seeing me at the hospital. I have started preparing her for what is up and last week she announced loudly in a restaurant, "Mommy has a boo-boo on her bum-bum!" Well-executed plan.

So, that is a roll-up of most of my trepidations. I do have a lot of faith in MGH and I'm not really worried about the more dire possibilities. At least not yet.

Watch out for the White Subaru

The last 24 hours or so has been no picnic. The burn healing process is not pretty. Itchy + painful has got to be one of the worst feelings out there. It just feels like fingernails on a blackboard, if that can be a feeling. And sometimes it's so frustrating when I'm shifting around trying to get comfortable that it just makes me kinda pissed off.

Driving is the worst for some reason. I guess my car seat is not very comfortable. Needless to say that I've had NO tolerance this week for people who are driving too slow, so if you see me, watch out because I might just mow you down. You'll know me because I'll be the one shifting around in my seat.

This all kind of took me by surprise a bit. I guess that's because during treatment I was never especially uncomfortable. I guess it just builds up and then one day it smacks you in the face at full-force. That day would be yesterday. I am hoping that was a climax of sorts.

We are due to make our annual trip to the Berkshires this weekend which I always enjoy. I am hoping I can endure the car ride without shredding the seat with my fingernails (luckily, I don't have any). Usually we are worried about how C will do in long car rides. I think I might be the problem child of this car trip however. I don't think a blanky and a pacifier will help me so much, but perhaps a shot of whisky before we hit the road will take the edge off.

Of course, as I write this the long-suffering people of Haiti have been dealt the worst blow imaginable. It puts my whining into perspective. I am lucky to have a roof over my head, my trusty sweatpants, and a Walgreens down the street. Among many other things.

Phase 2=Through

Well, today was another milestone in this process. Pre-op radiation is complete. I no longer have to go to the hospital every day for treatment. In the next few weeks I have some tests and scans here and there and then it's surgery time.

It's a relief on many levels. Physically, at this point, it couldn't have come soon enough. Remember what I said about relishing sitting this month, before surgery? Yeah. Well, this week, not so much. I'm uncomfortable a lot of the time and some of the time it's just downright painful. I am sorry to be graphic, but it is truly a burn. It is kinda like I sat on a small campfire, but had no s'mores to cushion the blow. Or even to eat while my a$$ was getting burned. I have been taking oatmeal baths pretty much every night And Tylenol helps a little. And wine helps the oatmeal bath. I have never been a bath person, but I see that there are enjoyable elements to it. Still, I don't think I'd opt for many future baths just for the fun of it. Unless there is a fantastic jacuzzi tub in my future. Tonight, while I was taking my oatmeal bath, I read something in a book about a guy taking an oatmeal bath. I'm sure there is some deeper meaning behind this coincidence, but I haven't a clue what that is.

Even though my last proton treatment (that's the one that really messes with your skin) was Thursday, I guess this week my symptoms get progressively worse and then the following week it starts to get progressively better.

So, really, until this week this radiation stuff hasn't been such a big pain in the a$$ until it literally became one. I am sorry to make such an obvious joke, but it just heads you off at the pass.

I am happy to be done with this chapter.

Toddler Appreciation Day

I just love a gaggle of toddlers. Today I brought C to daycare with cupcakes so they could have a little pre-birthday celebration for her at school. I brought her and her lunch in first and then I told one of the teachers that I was going back out to the car to get the cupcakes. One little boy who's usually pretty shy (I think he's a notoriously picky eater too) picked up on this immediately and said, "Cupcakes?!" Little red-headed A said, "Cupcapes! Cupcapes!" Little I said "Dos anos!" (Their Spanish is really coming along.)

They all herded over to the entrance to the kitchen. Apparently they thought they were getting cupcakes for breakfast! I think I now know the secret to mobilizing a group of toddlers. When they got in the kitchen they all began to sing "Happy Birthday" in a different key and pace. I guess all this unexpected attention got to C (or maybe she thought I had left without saying goodbye) because she started to cry, which is really out of character for her lately. I went over to give her a kiss and reassure her and then I was on my way.

I don't think I could last a half hour taking care of 8 or so toddlers, but I'm not sure there's anything cuter than a whole mess of them, especially when they have a common purpose-an extremely rare event. I loved it.

My baby is 2. I absolutely can't believe it. And apparently she hasn't heard about that terrible 2's stuff yet because lately she's been delightful (I knock on wood as I write this). Some people mentioned to me that she might sense what I am going through. I never really bought that, but consciously or not, in the past few months she's just made it so much fun to be her mom. I am eternally grateful for this timing.

I'm not saying she's been perfect. Yesterday she refused to nap. But to be fair, we screwed up her schedule. Despite three attempts to get her to nap, she didn't resort to crankiness or meltdowns. Somehow she made it to 8 pm perfectly happy and presumably exhausted.

I am so grateful for this particular phase because I don't have the energy for meltdowns at the moment. (To be fair, who ever does, really?) If we could keep this streak going for the next couple of months, that would be great. I guess acting out is a sign of development, so I am selfishly asking for stalled development. So be it!

I am totally tempting fate by writing this. I'm just asking for a restaurant tantrum or something. But I had to put it out there.