The Pitfalls of Watching TV After Diagnosis

One of the unexpected ways that a cancer diagnosis has changed my life is it’s sometimes dangerous territory to watch movies or television shows (and, to a lesser degree, read books) because they have this unnerving tendency to suddenly fling a cancer or breast cancer angle at me.

For instance, I put on silly old Queer Eye for the Straight Guy tonight, just to kill some time while I picked up the kids’ toys and generally tidied up. But the Straight Guy for this particular episode was a widower, a man who lost his wife to breast cancer just two years ago. The Fab Five were helping him “move past” his wife’s loss, to help him be a better father to his motherless kids (oh right, did I mention there were three kids involved, aged 6, 11, and 13? yeah that didn’t punch me in the gut).

I cried buckets watching the show. They would periodically show the wife’s photos and tell stories about how wonderful she was and play poignant piano music in the background, and I was just bawling. I wanted to know MORE. I wanted to know what stage was her cancer? When they said she died three years after her diagnosis, did that mean she had a recurrence? Was it in her lymph nodes? Did it metastacize? Did she have a mastectomy? Did she turn out to have either BRCA1 or BRCA2, and if so, does her family worry that the children will also be positive for the mutation? The Fab 5 were blithely ignoring my questions about her cancer and told me nothing more than she had cancer and died, but she was brave.

In the absence of facts, I immediately began picturing Tom and my boys in a me-less future, because that is what I doooooo. And then I cried more, because the thought of not growing old with Tom or seeing the boys grow up is beyond unbearable. I’m still all puffy and red-nosed now, and I might just have to dig out some Ativan if I ever want to get some sleep tonight.

Do I even need to mention that I didn’t get very far with the toy tidying?

The Cookie Has Spoken

Today marks eighteen months since my diagnosis, and eighteen months and a few days since I last had cancer in my body (nutshell for those just joining in:  turns out that the Surgeon I Strongly Dislike did get clear margins the first go-around, and my lymph nodes were squeaky clean).

In light of that, I really rather liked the fortune I got in my fortune cookie today:

You will have much to be thankful for in the coming year.

Although, I think it could’ve rocked a bit more if it said “50 years” instead of “year.”  No matter, I’ll make it so.

Running, Post-Cancer and -Chemo

The subject line is misleading because it implies that I’ve noticed running after cancer and chemo to be different from running prior to the big C&C combo, but, no, actually, I’ve only ever run post-cancer and chemo.

Still. I have valid observations to make!  so observe I shall.

• The first two times I ran, I hurt like mad. My shins, that is.  My shins hurt so bad.  I was doing that walking-slowly-and-gingerly thing for a couple of days last week, and kept thinking “oh my God, I’m breaking my own legs with this running crap!”  (because of my low bone density — damn you chemo and heparin!)  However, cooler heads prevailed and convinced me to try new running shoes.  And the shin ouchiness went away.  Am pleased that I am not in fact breaking my own legs by running.
• It’s not easy, but it’s not killing me, either.  In a lot of ways, it’s kind of like my chemo experience.  It doesn’t make my body feel particularly good while I’m doing it (or afterwards, either), but boy does it make me feel like I’m winning over…something.  I’m accomplishing something.  I like that feeling.
• I’ve been doing my Race for the Cure training for a week now, and it’s getting a bit less-impossible, but at the same time, I don’t know that I’m going to be able to manage to run the entire 5K. However, I think if I manage to run even part of the Race next month, that’ll still count as an accomplishment, and I won’t have anything to be ashamed of.  That does take some of the pressure off.
• Found a podcast for each week of the Couch to 5K plan (the training plan I’m following for the 5K) that helps a whole lot.  Just search on iTunes for “Couch to 5K” and you’ll find it.
• I am certain that the very sight of me allegedly running would send y’all into fits of hysterical laughter.  I am SO not fast.  I look even more awkward than speed-walkers look — and that’s sayin’ something.

That’s all I’ve got tonight. Seacrest out.

Three and a Half Years to Go

I can apply for life insurance again in March 2010, but to be safe, maybe I’ll wait until June. Or September.

After the boys were born, Tom and I decided to act like grown-ups and decided to officially apply for a big deal life insurance policy. We were told when we signed the application that it was pretty much a shoo-in that we’d get approved, and that they’d consider the policy effective as of the date that we signed the application (mid-February 2005). I’d found the lump by that point, but hadn’t yet had the ultrasound that showed it had irregular borders, so I didn’t feel guilty about applying. Plus I was completely honest and disclosed my August 2002 lumpectomy (benign calcifications).

But the insurance agent kept calling back, to get more details. Some deets he wanted weren’t even related to the lump (and some were hilarious, like the time he asked what a Bennigan calcification was…I eventually realized he was mispronouncing benign), but since I got my diagnosis within 3 weeks of signing the application, I wondered what would happen. Tom kept saying “oh, the diagnosis didn’t happen until after we signed the application; don’t worry!” It wasn’t until after my bilateral mastectomy and partial oopherectomy (but before starting chemo) that the insurance agent called, all apologetic, to say that they were sorry, but they were unable to provide me with a policy.

Later on, when we got the official rejection letter from the Very Large and Old Life Insurance Company, they said they were officially unable to provide me with the policy we applied for due to my “history of breast cancer.” Assuming they did what they said they’d do, based our application solely on our medical histories prior to the date of the policy application, that means my one benign calcification now is a “history.”

Oh, and by the way, they thought they might be able to provide me with a different (lower) level policy, at a hugely increased premium. Like quadruple the original policy premium for an eighteenth of the original policy value. They also jacked up my husband’s premium, $500/annually over the original quote.

Apparently, however, I am “welcome” to reapply when I am five years with NED. Technically, that would be March 9, 2010, but I suspect that they’ll say I’m not NED until after my five-year anniversary of completing chemo (September 14, 2010).

My New Challenge

I have signed up to do the Tupelo Race for the Cure in October.  I’ve walked in several Race for the Cures (and similar events) in the past, but I’ve decided that this, my first official Race as a survivor, I’m going to RUN.

For those of you who don’t know me, I don’t run.  I’ve never run anything, at least beyond those awful run-around-the-field-five-times nightmares they’d make us do in junior high gym class.  I had exertional asthma when I was younger…I don’t think I have it anymore, but having had it when I was younger meant that I generally associate physical exercise with pain and discomfort, so I avoid it.

So it is pretty major to me, for me, to be running something, even “just” a 3K event.  I might be one of those people who doesn’t cross the finish line until dusk, long after the officials have gone home, but I really want to do this. I really want to mark the occasion of my first year after completing chemo by doing something challenging, by doing something I haven’t done before.

Please wish me luck.

Hair

A lot of people will tell you that their hair grew back differently after chemo…either it was straight pre-chemo and grew back in curly or it was curly pre-chemo and grew back in straight. Mine is the former. It’s so curly! Mom tells me that her wacky post-chemo hair lasted about two years and then went back to normal. So I guess I have about another year, year and a half of curly hair.

Why is this difficult for you?

Dear Health Insurance Company,

I don’t understand. You covered almost every speck of my cancer surgeries (three, averaging about $20,000 apiece), various reconstruction procedures (totalling probably $25-30,000), and chemo treatments (six, around $16,000 per round, not including prescription take-home meds)…and here we are, still bickering over whether or not a test we all know as a “pre-chemo echocardiogram” done a year and a half ago is necessary?

Are you serious?

Do you really think people have EKGs for fun? Or have chemo for fun? What part of “pre-chemo echocardiogram” (WHICH YOU REQUIRED, I might add) is hard to classify for “reason for test?” When you ask me “what was the diagnosis code for this test?” and I say, “uh, cancer, ’cause I was about to start six rounds of chemo, which I’ve since completed and you’ve paid every dime on already?” how come you can’t believe ME over the COMPUTER??

I am grateful that you pretty much didn’t make a peep during my surgeries or chemo, but why are you bitching about a $300 test that you required that I have before starting chemo? Don’t think I won’t call you every day and bug you about this, either. You’re not getting off easy. I am not going to pay for that test. You are. In exchange, I get to not be eligible for life insurance for the next five or so years. Deal?

Your friend,

Sarah

MidSummer Report

I’ve been needing to update for a long time, I know, but I’d been waiting on test results to come in first.

For a while now, I’ve been having very lower back pain (almost tailbone), but hadn’t thought much of it as I’d actually been having those pains since the pregnancy with the boys. Several doctors and I had discussed it and we theorized that the 14 pounds of babies I carried by the end of the pregnancy probably did a little number on my tailbone, so that’s what we assumed was going on.

So I mentioned this at my most recent check-up at the oncologist’s, assuming he’d be “oh sure, remember, you had those huge babies parked on your pelvis all those months,” and dismiss it. But he ordered lots of tests to be run, to check it out. I’m glad he did, because this pain has been far worse than ever it was during pregnancy. Sometimes when I stand up, I walk around hunched over (like Australopithecus with less hair). Anyhow, I had these tests–a bone density scan, an MRI of my spine and pelvis, and a PET scan–done over the past week and a half. I also had an ultrasound to check on my Lone Ovary.

Today I got the results, and, first and foremost: no cancer. So that is the wonderful happy news there. However, my bone density scan came back saying that I have lost 27% of my bone density in the past year. That’s a significant amount. I don’t think it quite qualifies me for membership in the Osteoporosis Club, but it does mean I have to start heavy-duty calcium supplements and calcium-rich foods, etc. etc. And that probably explains why my backpain has ramped up so much in the past year. I am waiting now to hear back from the oncologist’s office about which orthopedist in town I will start seeing, to see what else can be done.

As for the ovary, I’d been having what I thought were ominous rumblings for a while, so that’s partially why the ultrasound (also because it hadn’t been checked in on since the right ovary was removed in May 2005). The ultrasound tech isn’t supposed to tell you much during the test, but she did say that she saw the left ovary (truly menopausal ovaries aren’t usually visible on ultrasound) and that she saw what might be a follicle (pre-egg). The radiologist’s report merely called it a simple cyst, but I understand from the oncologist’s nurse that oftentimes on a radiology report, cysts and follicles are often called the same thing, particularly when doing a cancer check.

What does that mean? It means that I might be finally–after a year–coming out of chemo-induced menopause. I did more bloodwork today to check on hormone levels, but it is possible that my cycles may be returning.

It also means, though, that I’ve got a tough decision to make, no matter what the hormone levels bloodwork tells us. The oncologist stated, quite plainly, that he is strongly encouraging me to get the remaining ovary out asap, because (as he says) if I’m not going to come out of chemopause, then why keep it, and if I do come out of chemopause and don’t have another baby, then why keep it. As he said, it is his professional, rational opinion that I need to be ovary-less as soon as possible.

I’ll be 35 in the fall. On the one hand, a third child would be lovely in many ways, but on the other hand, I am just not sure if I am prepared to take the chance of keeping my left ovary (“the timebomb,” as my oncologist called it) for the sake of a distant promise of a possible third child. Heavy decisions to make, eh?

In other news, since my last update, we’ve been travelling a lot! I took the boys and we drove to New York (1,200 miles, one way) for a week to visit with family. We went to the beach, swam a lot, visited Auntie Meg in Brooklyn, and had a very lovely time. The drive back home to Mississippi wasn’t bad, thanks to the DVD player in the car. We’re also planning a trip to the beach in Florida later this summer — Tom has a business trip there and we are tagging along with him. After Labor Day, the boys will start going to a Mother’s Morning Out program at a local church…twice a week, they will spend the morning there. It’ll be good practice for preschool (which won’t start until Fall 2007), and, best of all, I’ll have six hours a week all to myself!

Happy Father’s Day 2006 update

(and Happy Birthday to Mom)

So the news from my mother is that her oopherectomy went very well, and even better news is that the pathology report came back all clear. Not even pre-cancerous stuff going on. PHEW.So now we can get down to the serious business of Summertime. The boys and I are Roadtripping to New York to visit family, and then later this summer, Tom has a business trip at the beach in Florida and we’re going with him. And, of course, the boys turn 2 in just a matter of weeks (though they already have their Terrible Twos membership cards; they’re getting very skilled with the tantrums). I’ve got a regular checkup with the oncologist coming up the week of their birthday, but other than that, it’s hard to remember how different things were just one year ago.

Father’s Day 2005

Father’s Day 2006

Thomas is waving and Alexander is on Tom’s back

(can’t see my curlytop hair very well there, sorry! I’ll try and get a better photo of it soon)

Hair Regrowth Status Report

I hate to complain about my hair because, dude! I have hair that I didn’t buy out of a catalog!! But it’s really frustrating. It’s frustrating because it’s curly, but also short (haha, my short and curly hair has me by the short and curlies; I am 12). and nothing can be done with it.

Tom said the other day that my hair looks like his grandmother’s before she goes to her weekly beauty salon appointment. Sad, but true.

ANYHOW. I got a book the other day for Curly-Haired Girls but it’s mostly for curlygirls with LONG hair, not Little Orphan Annie type crazy short curls, so, bah. That’s no help. In the end, I wrap a lot of scarves around my hair (like headbands). Tom says it looks very much like me. which is good, as it IS me. I keep talking about going to my hairdresser and having her do something to it, but then I think what if she doesn’t know how to cut curly hair and I end up back with the Cancer Patient Look again? So maybe I should just let it grow on its own.