Hey, teacher, leave my kid alone!

(Actually, it's the sixth grade assistant principal who is the object of my ire, but I just couldn't pass up an opportunity to reference Pink Floyd.)

Over the course of one week, my son Boyce twice found himself sitting across his assistant principal's desk, having a disciplinary discussion about his behavior in school. My child, who has never been in trouble at school since he toddled into preschool at 19 months-old, definitely got caught this time on the wrong side of Gwinnett County's "No Tolerance" policy.

His first offense? Shoving a kid with his trumpet case so he could make his way to his seat in band. When asked why he did it, he said he was just having a bad day. For this he received an hour and a half of after school detention.

Fast forward a few days. Boyce arrives at the door of his science classroom only to find that the class's token disruptive kid has locked the door and is laughing maniacally at Boyce through the door's window. A good Samaritan kid, who'd managed to gain entry before the door locking inspiration, unlocked the door so that Boyce and the remaining half of the class were no longer barred from entry.

When Boyce entered the room, laughing kid gets right in his face and has a pretty good chuckle at Boyce's expense. Boyce's response? A swing of his padded binder at the kid...resulting in four hours of Saturday detention, and a second violation of part D of Major Rule #5 of the county's code of conduct. Other parts of Major Rule #5 outline offenses such as assault and battery of another student leading up to and including murder. I'm not exaggerating. Once again, Boyce reports to the assistant principal that he was having another bad day.

Interesting fact about both instances? Neither of them was witnessed by a teacher or other adult who could adequately put the actions into context. In both cases, the principal made her determinations based on the recollections of 11 and 12 year-old kids.

OK. I'm going to take a deep breath now before I go any further.

I do not deny that Boyce's behavior was unacceptable. I wouldn't even begin to excuse his behavior because of the craziness our family has been through for almost a year now as we've navigated through my cancer treatment. I wouldn't even suggest his infractions should have been overlooked because, at the time of his bad days, we were waiting for my PET scan results to find out if the 18 weeks of chemotherapy I just completed had extended my life.

But Mother Mary and the little baby Jesus, cut the kid some slack.

I accept some of the blame for the situation. Back in October, when we found out I had metastatic disease and needed to begin chemo right away, I contacted both Allen and Boyce's teachers to tell them what was going on with me. One particularly wonderful teacher of Boyce's immediately involved the guidance counselor so she was up-to-speed. It just never occurred to me to contact the administration. I assumed, obviously incorrectly, that any out of character behavior of my sons would come to the principal by way of a teacher.

The assistant principal knows now, but I'm not convinced it would have made any difference if she'd known before. "No Tolerance"...even if you're not sure if your mom's going to be alive in a year. I'm not convinced the system allows for any leeway.

This I do know. I'm very proud of my boys. They're both in gifted-level classes in all their major academic areas and nearly making all A's. Boyce hasn't missed a single day of school this year, and Allen's missed only one, when he got his braces. They've learned how to wash their own clothes and how to make a simple meal. They've gotten up and on the school bus by themselves when Paul and I have had to leave very early for chemotherapy. They've had to endure more stress and worry than any 12 year-old should.

Thanks for hearing me out. I'm going to meet with the assistant principal next week and submit a letter outlining our family's extenuating circumstances to be included in Boyce's file to provide some context. I needed to get all the snark and anger out before doing this.

Any educators out there who have any insight to share?

My bald badge of honor

It's an amazing sensation to be able to feel your scalp unencumbered by hair. Well, mostly. Not quite all of my hair fell out during chemo, but there was lots of open space that felt so incredibly smooth and soft. I couldn't keep my hands off my new head. All my eyelashes are gone now but a shadow of my eyebrows remain, just enough to help me draw them in easily.

Several days ago I was mindlessly rubbing the back of my head, and I suddenly realized I was feeling new fuzz. It's been five weeks tomorrow since my last session of chemo, so it's time to start to feel a little extra fuzz. I have to admit, I'm feeling a little wistful. It's been a rather carefree way to live, this baldness of mine. No shampoos and conditioners and styling gel and styling mousse and hair dryers and round brushes. No time spent wondering, will I wear it curly or straight today? Up or down?

So, to commemorate the beginning of the end of my alopecia (for now), I celebrate with a photo of me in my (mostly) hairless, makeup-less, steroid jowly and puffy glory. 

Decisions, decisions, decisions

Still a little shocked and giddy from my good news, we've managed to navigate our way through some of the decisions we're facing.

We've decided to cancel our trip to MD Anderson. After the outstanding results from my PET scan, we're feeling less of a need for a second opinion. I've asked MDA to keep my file in case we decide to go there again.

Wednesday, I had both my pulmonary function tests and head MRI. The thoracic surgeon will take these results, along with my other medical records, and present my case to the hospital's tumor review board for input and recommendations for surgery and future treatment. This will occur on April 2nd. The surgeon will contact me afterwards about scheduling surgery, assuming all goes well with my evaluation. He acted like it was mostly pro forma.

I've decided to request the open thoracotomy procedure so the surgeon can actually get his hands on my lung where the remaining nodule resides. Doing so will allow him to thoroughly evaluate my lung for any other abnormalities and remove them. The downside?  A potentially long, uncomfortable recovery. But, I've decided the benefit is worth the cost. They just better give me some most excellent drugs. 

I'm encouraged and feeling very hopeful, but I also feel like I have miles to go before I sleep. 

Great news...but I'm not done yet

My post-chemo PET scan showed no evidence of metastatic disease! The two smaller nodules in my left upper lobe are gone. Gone!

The larger nodule in my lower right lobe went from 2.2 cm in the previous scan to 0.9 cm in this scan. But, the big news is that it took up none of the radioactive glucose, which means the cancer cells are dead. Dead!

However, you might remember I had an appointment with a thoracic surgeon this morning who specializes in malignancies in the lungs. After reviewing my records, he made a very strong case for going in and removing what's left of that remaining nodule and have a look around the rest of that lobe to see if there's anything that the PET scan missed.

He doesn't advocate doing the surgery laparoscopically or robotically because he can't explore the lung nearly as thoroughly. So, we're talking about an open incision on my right side, closest to the affected lobe. That being said, he will support whatever my wishes are for surgery...open, laparoscopic, or none.

He also said he'd recommend some more chemo after the surgery, sort of as an insurance policy. He wants to order an MRI of my head...just to be sure there's no cancer there. The PET scans only went as far up as my ears. And, he wants to do a pulmonary function test to see how healthy my lungs are. My pulse-ox today was 97. Can't ask for much better than that.

All in all, what he said today made sense to Paul and me, but we haven't made a definitive decision. We've got to think about it a bit.

We left the surgeon's office just in time to sit in my oncologist's waiting room for two hours, until called back at 2:00 pm for my 12 noon appointment. But, once we got in the exam room, things went rather quickly, for a change.

My thoracic surgeon had already called my oncologist to discuss his recommendations. My oncologist concurred with the proposed plan. Now, Paul and I just need to decide.

We're also reevaluating our plans to go to MD Anderson next week, after finding out I had such a great response from my chemo. I have to admit, I like the assertive suggestions from the surgeon. I've got a lot of living left to do, and I want to be as aggressive about my treatment as possible.

As far as the oncology practice closing goes, the details are still very sketchy...they don't dissolve until mid-May. However, each of the partners is still staying in the Atlanta area, but they will likely be affiliated with a different hospital. That's all I know. So, I'll have to decide if I want to stay with my current oncologist, wherever he ends up, or if I want to use this transition as an opportunity to make a change. You might remember, for the most part, that I like and respect my oncologist...I just think the practice is very poorly run.

So, great news! With some complicated decisions to make.

More soon.

Surprise, surprise, surprise

Through unofficial back channels, I found out yesterday that my gynecological oncology practice is shutting down. Not merging with another group. Closing its doors.

Tomorrow, I have my appointments to go over my recent PET scan, meet with a thoracic surgeon, and talk to my oncologist about what's next with my care. I guess there's another question to tack on...just where will I receive my future care?

Dealing with a cancer diagnosis is challenging enough. There are so many unknowns and ups and downs. It just doesn't seem fair to have to add another unknown to the mix.

Yes, I haven't been particularly thrilled with the running of this practice for some time, so perhaps this turn of events will all be for the best. But right now, it just feels like another hurdle to clear. At least I'm kinda on a treatment hiatus right now, or I'd really be freaking out.

Wish me well for tomorrow. Lots of questions to be answered.

No results yet

I have decided not to get myself all tied up in knots, trying to wrench the results of my PET scan out of my oncologist's office over the phone. So, I am very peacefully waiting until Monday when I have a scheduled appointment.

I'll post as soon as I know.

PET scan

By 10 am yesterday, I was in the always crowded Outpatient Imaging Center waiting room waiting to become radioactive.

This was my fourth PET scan, so it's become rather ordinary. A patient care specialist -- read 'health insurance narc' -- registers me for the fourth time, copies my insurance card and drivers license for the fourth time, and has me sign four different documents for the fourth time, promising to consent to become radioactive, pay for this privilege or surrender my first born, affirm that all my billing and contact information is correct, and give up the name and phone number of my closest relative they can harass if I don't pay my bill and flee the state with my aforementioned first born.

A few minutes back in the now standing-room-only waiting room, and I'm called back by a radiology tech to get the real business underway.

By the way, this was my look for yesterday. I was aiming for something a little above yoga casual.


Here's my black cloche hat with my grandmother Mammy's brooch. 

The tech puts in an IV line in my right hand, draws a little blood to check my glucose level. I've been fasting since midnight, and if my glucose is too high, I can't have the PET scan done. My level is fine.

Then, the tech exits the room and returns with a heavy lead box containing my radioactive glucose injection. Preventing radiation exposure to the employees is important, hence the lead box.  For me, ah, no problem.  I'm only zapped every couple of months.  But, the tech always advises me to drink plenty of water the rest of the day and stay away from children until eight hours after injection. At my first PET scan, that kinda freaked me out.

After injection, the tech again leaves me to my own devices, for one hour this time, while the solution circulates my body, hopefully finding no cancer cells to cling to.

At the end of the hour, I'm escorted into a room with the PET scanner.  I lie down on the shoot that will send me into the large circular imaging machine...yes, just like you've seen on tv. 

The whole thing takes about 15 minutes, then my radioactive self is released onto the unsuspecting public.

Now, we wait.

 



Upcoming events

I have my next PET scan Thursday, two days from now. When I find out the results depends on how assertive I decide to be with my oncologist's office, because, Lord knows, nobody there is just going to spontaneously pick up the phone and call me.

Monday, March 18th will be an action-packed day. At 9:30 in the morning I have my appointment with a thoracic surgeon to review my PET scans and determine if I'm a surgical candidate for any remaining nodules in my lungs. Then at noon, I see my oncologist to talk about what's next.

The week of March 25th, Paul and I head to MD Anderson for my second opinion. Currently, I'm scheduled to see one of the gynecological oncologists on Monday morning. The patient liaison has advised us to plan to be there the whole week in case I need additional appointments or tests. They seem quite thorough.

In the meantime, I'm trying to get caught up on emails. I owe more than several of you a word or two. I'm just now feeling like my head is coming out of the fog of the last chemo. I beg everyone's pardon.

The chemo wardrobe

Recently taking stock of my closet, I realized my clothing now falls into three categories: date night, nice casual, and chemo.

Before my diagnosis, my wardrobe was made up of pretty much just the first two categories, though I did have one pair of yoga pants, one pair of shorts, and a few oversized t-shirts for exercising. Now, all I wear is an assortment of yoga casual, which says I'd really rather be in my pajamas but I'm going to make myself presentable enough to meet the UPS guy at the door.

I'll even go to the grocery store in my yoga duds, drop the boys off at school, or go through the Starbucks drive-thru. (Oh yeah, I also do yoga in them.)

But, the main reason I expanded my yoga apparel was chemo days. Truly, you'd prefer to be lounging in your jammies for such an occasion, mostly so you don't have to change your clothes when you get home before you fall in bed. But, then there's that presentable enough for the UPS guy issue.

However, during one of my sessions, there was this well-heeled woman getting her chemo the same time as me. She looked liked she just stepped out of Ann Taylor, complete with a full face of make up and wig.

I looked like I'd just stepped out of pilates class, wig-less and cap-less, with nothing on my face but Carmex lip balm. Chemo attire.

And we all know that these days it's much cooler to underdress than overdress.

I'm just glad the occasional girlfriend comes by to take me out to lunch, or I'd probably never wear pants with a zipper again.


P.S.  A reminder for my British friends. In American parlance, pants are trousers, not underpants. Though I must admit, the idea of zippered underpants is, at the very least, worth a giggle.