How The Other Half Lives

So today Bambina and I were doing jumping jacks for fun while counting.
I did 100 without blinking.
And recovered my breath in about 4 seconds.
I turned to the Baby Daddy and said, "Is this normal? Am I okay?" He assured me that, yes indeed, even the most marginally fit person with normal bone marrow function will be able to do 100 jumping jacks without keeling over.

Forget keeling over; as the Brits say, you could have knocked me over with a feather.

I don't think, now that I look back on my life, that I've ever really known how you all have been living lo these many years. How the hell was I functioning with less than 25% bone marrow? How was I working out? How was I parenting my child? How the hell was I getting up in the morning and not collapsing by day's end? (oh wait--that I did). But seriously. I've been missing out! It's kind of like (although actually not really) that SNL skit with Eddie Murphy where he impersonates a white guy and all of a sudden he tries to pay for stuff but the newspapers are free, the bus is a party, life is just wildly different from his previous experience:

Eddie Murphy: You know, a lot of people talk about racial prejudice. And some people have gone so far as to say that there are actually two Americas: one black and one white. But talk is cheap. So I decided to look into the problem myself, firsthand. To go underground and actually experience America.. as a white man.

[ Eddie walks onto the street, the perfect portrait of a white man. He enters a convenience store, grabs a newspaper and drops it on the counter. ]

Clerk: What are you doing?

Eddie Murphy: I'm buying this newspaper.

Clerk: That's all right. There's nobody around. Go ahead, take it. Take it. [ Eddie gives him a quizzical look ] Go ahead, take it. Yeah. Take it. Take it.

[ Eddie takes the newspaper, and cautiously exits ]

Eddie Murphy Voiceover: Slowly, I began to realize that when white people are alone, they give things to each other for free.
[ cut to Eddie catching a bus. He sits down between two white women. ]

Eddie Murphy Voiceover: There was only one other black man on the bus. He got off on 45th Street. [ the busdriver looks around the bus carefully, then sets a party in motion, complete with music and cigarette girls ] The problem was much more serious than I'd ever imagined...

Yep. This "moving around without thinking your head will explode after 10 steps" thing has been your big secret. But the secret's out, y'all. Now I know what humans can do when appropriately fueled: hundreds and hundreds of jumping jacks.

Followed by a free newspaper.

That's Not My Bag, Baby

One of the meds I take in large quantities is called acyclovir. I was told that it's an antiviral intended to suppress any latent viruses in my body while my immune system isn't up to the job. Apparently we have viruses lying dormant in us all the time (hello, chickenpox/shingles!) that our immune system keeps in check. Without the immune system in top form, we need acyclovir to help do that job. Yesterday I was on the phone to the local pharmacy because the refill I got on my acyclovir contained different-looking pills than the last batch; I just wanted to make sure I had received the correct pills in the correct dose. The short story is that the pills were correct but made by a different manufacturer, hence the different color and numbers on them than before. Lesson learned.

The other lesson I learned is that you should always read ALL of the information on your prescription insert, because I made a horrifying discovery mid-discussion with the pharmacist as I blithely yammered away, blah blah blah, lah-dee-dah about "my last four refills": acyclovir is primarily prescribed for the treatment of HERPES. Yeah, THAT herpes.

Which is not to disparage anyone with herpes since lord knows that kind of thing can happen to anyone, but yo! I had no idea that while I was chit-chatting with the pharmacist about my 12-month prescription for acyclovir, or sending people in to pick up my acyclovir, or mentioning casually to random people that I'm on acyclovir, that what I was implying was that I have suppurating VD pustules on my privates.

Awesome.

I've decided, therefore, that there is only one way to disabuse anyone of the herpes notion regarding my good self: the next person who picks it up for me has to wear little round bandaids on the side of their lips and pretend his name is Haggis.

The Classiest Chick in Radiology

So, how was YOUR morning? For reasons too boring to enumerate, I had a bilateral leg ultrasound today. All went well and I am just fine, except for feeling a little bit of that "bad touch" feeling in my tummy.

I don't know what I was expecting from a leg ultrasound (duh!) but I guess I was envisioning more of a greasy-legged x-ray or something. Oh my hell, y'all. This was the full-on K-Y situation and no mistake. My technician guy looked like a dead ringer for Alton Brown of the Food Network. So that started the proceedings off a little weird. Then he said, "okay, take off your pants, put on this gown and get on the bed." Fair enough. Then he brings out the squeeze bottle of joy jelly and starts wetting my legs. Only, it wasn't just my legs.

Hmm...how to describe this? You know that part of your leg near your hips that isn't your leg? The part that is kind of your hoo-ha but not your hoo-ha? Like, he had the monitor pressing into that part of my inner thigh/leg/pelvis that, if my va-jay-jay were a house, would be the in-law suite over the garage? Like, definitely not your Capital P Privates, but certainly a place that sure feels like it ought to be private!? That's where it all started. With K-Y jelly. With Alton Brown. Awesome. The most awkward part, besides a strange man pushing a hard object into my va-jay-jay's vicinity? It was tickling me and I could not stop laughing.

I think we've established through my various medical undressed events, that when I get nervous I find everything funny, but this was excruciatingly awkward because I could not stop flinching from the tickling and then couldn't stop laughing from a)the tickling and b)the nervousness resulting from me laughing from the tickling. Luckily for me, Alton was a consummate (did I just say consummate?!) professional. Unluckily for him, I was not.

So, laughter notwithstanding, Alton did his thing, going up and down both legs checking for whatever he was checking for. At one point it had taken so long that I was starting to get nervous, like has he found a bunch of blood clots? Do I have the first ever case of vein cancer? Can he not see my veins through my thigh fat? Finally he finished and said, "sorry that took so long, I just like to be thorough." To which, as I lay on the bed with my legs spread, K-Y jellied from v-j-j to ankle, I answered without thinking, "No. No. That's cool. I always appreciate a man who's thorough."

How Can You Miss Me If I Won't Go Away?

Today was my last weekly appointment at Dana Farber. From here on out, it's pretty much going to be monthly visits. Great news on all fronts, of course. But some part of me feels like a wee bird being shoved out of the nest. Which of course is the whole point: get me on the road to recovery, send me on my way (such as it is in-house) and then make room for the people earlier along that road to have their weekly intensive check-ups. But it is indeed a weird feeling. As much as I loathed the weekly weigh-ins and bloodletting I think there was a psychic comfort in knowing that I was being well-tended-to by experts, that no matter what came up, it was always 6 days or less till I'd have my mind eased. Obviously, I could get an appointment for 20 minutes from now if I needed one, but not having that weekly check-in will take an adjustment. Until today, it was their job to check me; now it will be my job to check me: to do a daily check for signs of Graft-Versus-Host, to do a mental check-in on anything different or out of the ordinary, and to continue to just accept that fact that my life is somewhat proscribed until further notice.

On the upside, I have plenty to keep me busy. Bambina has decided that she is no longer the incarnation of her preschool teachers. She is Barbara from the Dan Zanes Band. Barbara is a Diane Lane-looking hot older (?) lady who plays mandolin, guitar and violin in the band. She wears kooky bright colorful clothes and has (Bambina's key ingredient for love these days) dark straight hair. Every morning I have to pretend to be Bambina waiting for Barbara and Dan (she is also simultaneously Dan, but he is more of a bit player who tags along with Barbara) to come to my house for breakfast. Then we sing the song "Malti," which is in Spanish (thank you, Dan Zanes Band for teaching my kid another language!), and we discuss whether Barbara will be wearing her purple or orange tights today with her red jeans and pajama shirt. After preschool we sing the entire Dan Zanes Band catalog, spending extra time on "Malti," "Waltzing Matilda," and "Tennessee Wig Walk." By then it's time to ask Barbara whether she wants a dinner-dinner (one regular meal, like mac&cheese) or mezze (a bunch of little plates, like brie and pita chips, sliced apples, a leftover sauteed jumbo scallop, and some almonds). Barbara usually chooses dinner-dinner, but every so often Dan demands the mezze for his brie fix.

So it's been all fun and games with DZ and Friends. Although, Barbara's been around for a while now. She's cool and all, but I'm getting tired of calling her and asking her when she and Dan are coming over to sing 357 songs before dinner...

Hmmm....Maybe Dana Farber has a point on constant visits after all: How can you miss someone who won't go away?

TGI Thursday

Quelle drame this week, darlings.

So I had the Mohs on Monday, my head still hurt on Tuesday, I took a painkiller since I can't take Tylenol, woke up with a raging migraine side effect on Wednesday. Barfed. Barfed some more. Then some more. Dragged my sorry a** to Dana Farber for my appointment. You may have seen me there. I was the girl sitting on the bench outside barfing into a plastic bag I had presciently brought with me for just such an eventuality. Made it through phlebotomy (not without warning the nice lady that Things Might Go South at any moment), saw my doctor. Learned that I really can take Tylenol, just not more than twice a day.

What was that old rhyme about "For want of a nail?"

So after a Wednesday of drugged-out "sleeping it off" interspersed with "waking up to barf" I am now back in top form and further committed to spreading Mr. T's advice: Don't Do Drugs! And also to wondering why barf bags and basins are always so small. Like, those little kidney shaped basins? And those little round barf bags? You're supposed to vomit your guts up into that little round hole with tidy precision? What, am I the Tiger Woods of barfing now? So much pressure on a sick girl.

Anyway, all of the day's emesis prevented me from enjoying the fact my blood counts are the highest and closest to normal they have been in probably 15 years. I couldn't appreciate it yesterday but I definitely appreciate it today. My immunity is still for crap, mind you. But my bone marrow be a-workin' and that's the silver lining on yesterday's cloud of hurl.

Bambina, as always ahead of me by light years, asked on Tuesday, a full 24 hours before getting my great blood counts, if I would be all better when the "red has left your face." I ran to the mirror expecting to see big welts or dry skin or something. I almost burst into tears looking at my very normal reflection because I realized that my 3 1/2 year old kid has never seen me with rosy cheeks and bright red lips before. I told her that everyone has rosy cheeks and now I do too BECAUSE I'm getting better. She got all excited, immediately forgot about my health, and said, "I have rosy cheeks?!" Yup, you do! Thereafter ending in a cheek ticklefest.

As I thought about her question later it struck me that kids pick up on more things than we realize. We talk regularly about what's going on, she comes along for the ride to various doctor waiting rooms, meets all my doctors, and she knows I'll be all better next year. We've made an effort to strike the balance between letting her feel a part of it and giving her a comfort level with where I am when I'm not home, while protecting her from details she can't comprehend anyway. However, it's clear that she's thinking about it more than we realize, especially when I remind myself that she is a full 6 months older--and wiser--since we began this whole journey. Every time I realize that fact I resolve to take more time to comfort her and reassure her about me, making sure she knows that it's not her job to worry about Mama. And then, just as I think we're about to have a teachable moment about her concerns about my health, she reminds me that she's wonderfully and life-affirmingly still a kid:

(Playing with my surgical gloves)
Bambina: We're wearing your medical gloves!
Me: Yes we are!
Bambina: Do you know why we are wearing gloves, Mama?
Me: I'd love for you to tell me, sweet girl. (Here it comes, my chance to have a conversation that is reassuring and comforting for her when she says "because mama is sick" or something)
Bambina: Because we are preschool teachers and we are about to wipe somebody's bum.

Mohs Definitely NOT!

Y'all. Do NOT get Mohs surgery! Whatever you have to do to avoid needing it, do it and do it now. Get your sunscreen on, start wearing hats and long sleeves, avoid chemo if at all possible. Because you do NOT want Mohs surgery, darlings. As lovely as all the people are in the office, as talented and fantastic as the doctor is, it's called "Mohs Surgery" because it is indeed SURGERY. Promise me you will do everything you can to avoid this most unpleasant of experiences. I always hated having a pale white face in the middle of summer. Now I have this, all from a basal cell the size of three pieces of couscous:

Basal cells are, fortunately, not malignant. But they are also not lazy. They grow slowly but surely, and are essentially the icebergs of the skin cancer family. The couscous-sized pink spot on my forehead was a WEE bit larger underneath. And by "underneath" I do mean, like, through all the layers of epidermis (the part we know of as "skin", all the way to the dermis. Which is why my stitched forehead is throbbing like a motherflubber to the point of making me nauseous.

Friday is my Squamous Cell Cancer removal day, which may turn into a bit longer of a day since I think I've found another one near my ear, which means I'm going to need another Mohs intervention on that. Awesome.

I'm telling you this for a couple of reasons. First and foremost, because I am a complainer. Why suffer in silence when you can have others suffer with you?! If I can gross you out and freak you out too, then maybe my gross-out, freak-out day hasn't been a total wash. :) Second, because although I make the point that my lengthy immunosuppression bears a decent amount of responsibility for these skin cancers blowing up, the key point for people not so immunocompromised is this: The fact remains that 90% of all skin cancers are caused by sun exposure. End of story. So if you think a tanned kid is cute (who are these people in 2007?!), you need to know that you will bear some responsibility for any skin cancers your child develops. If you consistently lay out in the sun "just to get a little color" you will--almost guaranteed--end up someday with "a little" something else. Skin cancer is the #1 diagnosed cancer in the United States today. I'd call that a freakin' epidemic, wouldn't you?

All I'm saying is that there are things far scarier and uglier than white legs in July:

From the good people at skincancer.org~

2007 Skin Cancer Facts
*Skin cancer is the most common form of cancer in the United States. More than 1 million skin cancers are diagnosed annually.
* Squamous cell carcinoma is the second most common form of skin cancer. More than 250,000 cases are diagnosed each year, resulting in approximately 2,500 deaths each year.
* One in 5 Americans and one in 3 Caucasians will develop skin cancer in the course of a lifetime.
* More than 90 percent of all skin cancers are caused by sun exposure.
* A person's risk for skin cancer doubles if he or she has had five or more sunburns.

MELANOMA
Approximately 59,940 melanomas will be diagnosed this year, with nearly 8,110 resulting in death.
* More than 20 people die each day from skin cancer, primarily melanoma.
* 1 in 59 men and women will be diagnosed with melanoma during their lifetime.
* One blistering sunburn in childhood more than doubles a person's chances of developing melanoma later in life.
* While melanoma is uncommon in African-Americans, Latinos, and Asians, it is most deadly for these populations because it is more likely to develop undetected.
* Survival rate for patients with early detection is about 99%. The survival rate falls to between 15 and 65% or higher, depending on how far the disease has spread.
* The cost of melanoma in the U.S. is more than $740 million annually.

MEN/WOMEN
* Skin cancer is the #1 cancer in men over age 50, ahead of prostate, lung and colon cancer.
* Melanoma is the third most common cancer in women aged 20-39.
* The percentage of women under age 40 with basal cell carcinoma has tripled in the last thirty years, while their rate of squamous cell cancer has increased four-fold.

TANNING
* Ultraviolet radiation (UVR) is a proven human carcinogen, according to the U.S. Department of Health and Human Services.
* Exposure to tanning beds before age 35 increases melanoma risk by 75 percent.
* On an average day in the U.S., more than 1 million people tan in tanning salons; 70% are Caucasian women aged 16-49.
* People who use tanning beds are 2.5 times more likely to develop squamous cell carcinoma and 1.5 times more likely to develop basal cell carcinoma.
New high-pressure sunlamps emit doses of UVR that can be as much as 15 times that of the sun.
* The indoor tanning industry has an estimated revenue of $5 billion.
* Up to 90 percent of the visible skin changes commonly attributed to aging are caused by the sun. These changes can be seen as early as in one's 20's.

So, armed with this scary new knowledge, my friends, HAVE A MOHS SPECTACULAR DAY! ;)