7.16.2013

Another Side of Effects

Last year, I had a chemo orientation before starting treatment; primarily to go over side effects.

This year, I had another chemo orientation. And once again, the list was read as I dazed off, knowing that nothing could possibly trump that whole bit about nausea and vomiting.

I knew my hair would thin again, but but didn't expect to loose it all at once. I knew I would loose more, which is how the last blog post came about. Though the list was long, I assumed that I might escape most of them like I did last year. I was wrong, kinda. And though they don't rank as high in misery as nausea, they are still a minor annoyance and sometimes major pain in my daily life.

Number 1: Mouth Sores
I never had a single one last year. But as with so many parts of the body, the mouth and lip are susceptible to damage because they have some of those "fast growing cells" in the body. I sat next to a young guy last year who was in far worse shape than me. He had just come back from a trip to MD Anderson (in Houston) and was waiting on his lab results next to me. He asked if I had any mouth sores, and then proceeded to tell me how bad his were; to the point of not being about to eat much. I counted my blessings and realized that having to travel to one of the big bad dads for treatment wasn't good. I was grateful for my very straightforward case of cancer.

There are things to help ease the pain, like special mouth washes. But as anyone who has had a canker sore or bit the inside of their mouths knows, it can hurt. Bad. There were a few days where the Arm and Hammer Baking Soda toothpaste was my worst enemy and teeth got brushed with toddler toothpaste.

So far I've only had a few minor run ins in this category, and the worst was on my lip. Right smack dab in the middle, just staring at everyone with its crusty self as I stood in line at Target. It took days to even start healing, which is uncommon with lip injuries.


No bueno for ice latte sipping.

Number 2: Peeling Hands and Feet
I now spend my Saturdays in the passenger seat of the Prius, peeling off giant chunks of foot skin and flicking them on the floor. All while Kyle rolls down his window and dry heaves over the grossness of it all. I told him I was just making sure there was plenty of my DNA around in the event he tried to have me knocked off. Between that and my shedding hair, I think the police will have no problem proving I was once there. Or everywhere.

The bottoms of my feet look red and raw as I lather them in Neosporan and put on socks in the middle of summer. The Neosporan is just my extra precaution on some of the spots that are more raw than others. My risk for infection is great, and running around at the beach or a public pool is just begging for nasty public germs. The neutropenics are in a class all their own!

I'm sure if I didn't expose them to so much wear and tear and water and flip flops, it might be slightly less bad. But when I get out of bed after days in a treatment coma and my finger tips are peeling, I know I can't blame my beach lifestyle for all of it.

You don't kiss mommy on the lips, she doesn't have to share her drink and no I don't want to try your fro-yo. No double dipping for this neutropenic.
A daily occurrence that makes for some raw feet.


7.09.2013

Lucky Number 7

I say lucky, because sitting in my lap in the first photo are my very positive CT results. Here is Kyle documenting my trip into sleepy treatment land.

I say lucky, also, because you get to see me without my eyebrows penciled in or my beloved mascara. Don't you feel lucky? What's the point when you're not even going to bother stopping to wash your face when you get home and crawl into bed for 48 straight hours.
Nikki hooking up my port.
What I call the VIP section. Really it's just overflow during a packed house. But with only 3 chairs, it feels like a different world away from the masses.
Benadryl coma. Oblivious to the music blasting in my ears. It's the power of medically-induced sleep.

Wigging Out

The time has finally come.

I was told at my chemo orientation this time that I would loose more hair than I did last year. And for a girl with very thick hair, last year's 30-40% loss was actually really nice. My hair washing, drying and doing process went from about 2 hours down to 30 minutes.

I started combing out chunks a week after my second round this time. I'm now 7 rounds in and dealing with my shedding hair has become a daily chore. I usually spend some quality time over the trash can every morning running my fingers through what's left to rid myself of what's ready to go. I then repeat the process before I take a shower and over the bathroom sink as I comb out my wet hair. It's all in an effort to minimize the hair that may fall out and form little colonies on the floor.

I've been wearing my hair pulled back in a pony tail or French braid for the last few weeks, as it hides the scalp a little better. But even with it pulled back, the slightest part in my hair just screams SCALP and begs the sun to burn it. I've taken to wearing hats every day and even picked up two more fedoras over the weekend. I'm not trying to channel Don Draper, I'm just trying to keep the sun from damaging at least one part of my body.

I haven't decided what's worse. To loose it all at once or to watch it fall out day after day; drawn out over several months. I guess in either situation, you have to face the inevitable one day.

My insurance has been nothing but amazing through all of this. Sure, I pay a nice monthly premium for private insurance, and I have a lovely high deductible to meet. But they have covered every single thing after that. Even the genetic testing I did last year, under the warning that many companies will not pay the hefty fee.

I was thrilled to call and find out that they will reimburse me for my "scalp prosthetic" no matter the price. Not that most of you know the wig industry, but that will enable me to get some higher end hair. Probably even "real hair." I'm not aiming for Beyonce nice, but something very nice for us regular folk.

Will I be rocking my wig as I run into Target for my daily visit to see if there's anything new I never knew I needed on a hot summer day? Probably not. But for the various social occasions, date nights and on non-gym days in air conditioned places where I have to mingle with the general public, probably.

I haven't done it yet, but I'm sure I'll be taking the buzzers to my current hair soon. I think having it really short will make the shedding less annoying, the giant clumps of hair I pull out in the shower less obvious and sweeping more about dirt and less about all the hair on the floor.

And I will be grateful for mascara, for it makes my 19 remaining eye lashes look amazing.

Clearly not a graduate of the Facebook School of Taking Self-Portraits.
Is that a gray I missed plucking?
Scalp. Lots and lots of scalp.

7.06.2013

18 + 18

18 years ago, my 18 year old self met a girl on the first day I moved into the dorms my freshman year of college. I think we shared our first college meal together in the dining commons, later shared a twin bed for much of the second semester due to a bad roommate situation, shared some misadventures that almost landed us in the dean's office, and shared those formative first years of adulthood and independence.

I was there went she came back to school and told me she met a boy while she was home, who chased after her car to say hello. I was there when they walked down the aisle on that hot summer day, with sweat dripping down my legs. I was there to hold her babies when they were breathing in their first moments of life.

And 18 years later she came here, family in tow, to take care of my family.

I guess that's what roommates do for each other. They share their beds, they share their care packages from home, and they share the love we have for each other's family when the need is there.

They also stay up till 3am during exam week to help you hang out the window and lower an extension cord with an alarm clock attached to the floor below, as payback to the boys who played their music too loud all year.

And they share the joy of cleaning up random toddler vomit on a Monday morning. As I held him over the toilet last week, I couldn't help but smile as I saw her run grab the bleach spray and paper towels and start cleaning up his initial hallway splatter.

And then there's her honey, who look my long honey-do list and humbly did it all in our East Coast humidity. He came here with a mission to take care of the caregiver, who is so often overlooked for the sake of the patient. He came here to relieve Kyle of day-to-day stuff that he pushes aside on the good days; when making the most of family time trumps the garage that needs to be organized, the gate that's been sticking or the edging that gets skipped during a quick mow.

Know that I'm crying just typing this out, Steph and Robb, because it means the world to us that you came here to fill the void last week. You served us in ways you can never know.
Three beach bum buddies.




7.01.2013

He was Smiling

If you aren't my friend on Facebook, you've had to wait for the official news. Sorry.

I should have noticed that my doctor walked into the room smiling, but I didn't. I was too busy bracing myself for what might be more bad news.

And as he said: "Would I have walked in here smiling if I had bad news for you?"

So that's the good news; we got good news.

Everything is shrinking. Chemo is working. The tumors are responding as they should.

I've mainly focused on the one tumor because it was the only confirmed cancer in my lungs. It was also the largest at 7.1mm. But I knew there were several other mystery dots that were most likely tumors because they were also growing. The pulmonologist just never bothered to find them because they were so small and because frankly, one tumor was all the confirmation we needed.

Though much of the scan report is slightly confusing, my doctor assured us that the news was good and the "overall number of the lung nodules appear to be decreasing. None of the lesions identified appears to be larger than the previous study."

As of now, the plan is to continue on with another 3 months of fun (5 more treatments) and then take a break and do some maintenance chemo. In my case, maintenance will mean me and my pump with no side effects hopefully. As I let it all sink in, I'm adding to my list of questions. When I'm sitting with your doctor letting the goodness sink in, questions are the last thing on my mind.

I wonder if I'll continue chemo until everything is complete gone.
I wonder if the tumors eventually give up and become inactive.
I wonder if surgery will ever be an option; especially as it becomes more obvious what is a tumor and what isn't.

In the mean time, I'll bask in the glory of cancer-killing power and enjoy chemo for what it is and what it does.