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.