But Most of All...

…Wear Sunscreen.

Baz Luhrman was right. Even back in the late ‘90’s during that dreadful spoken-word graduation address song of his that kept getting played on the radio. Most of all, wear sunscreen.

I went to the dermatologist last Friday, mostly to get a post-transplant baseline checkup since the biggest risk of getting a transplant (besides dying, of course) is developing skin cancer. I also had a red spot on my forehead that mimicked dry skin that would heal and become shiny only to become dry again. Since January. So it was time to get the look-see.

Luckily the spots on my leg, chest and hairline were, in the really sweet dermo’s words, signs that I am getting old and that I got too much sun when I was young; ie, nothing to worry about. The thing on my forehead, however, was indeed precancerous and needed to be removed and biopsied. He assured me that it wasn’t melanoma or the other invasive types of skin cancer, but an early cancer nonetheless.

So some lidocaine, a hole punch, a skin shaving and a couple of stitches later, I was on my way home, determined that someday soon I would no longer have to look down the long, dark depths into puncture wounds on my body. From bone marrow biopsies to the hickman hole (which still is under appropriate dressing) to the new little hole in my forehead, I just decided that I was so over the very disquieting sensation of seeing open holes when I look in the mirror.

Yeah yeah. Poor me. I’ll take your sympathy on the hip bone holes and the chest hole. But this forehead hole? I’ve had this one coming for a long, long time.

Consider that, in the mid-1980’s, I would lay out in the sun with my sister and her friend Christine wearing not sunscreen but baby oil. Those were the days, weren’t they? Before baby oil and sun exposure were listed in the same risk matrix as unprotected sex and junkie hookers? Good times, good times.

Then in high school I fell in love with and set about wooing and dating Christopher Mancini (not his real name), a sweet hunka hunka beautiful Italian high school amore. Oh my lord, I loved Christopher Mancini. I loved his parents, his dog, his Nonni and Nanno. He was the man I was going to marry. Just as soon as I got myself tan enough to not glow in the prom photo next to him. I hied myself to Tropic Tan where I baked and sizzled myself to a miraculous-for-me shade of vanilla latte. And oh how cute those photos were. And how I dreamed of tanning all the time so I could try to pass for a Catholic paisan when all his family arrived for the wedding and oohed and aahed over me during the dollar dances. Yeah. It was indeed amore. Little did I know it was also moltissimo stupido.

Then fast forward to college when I'd go out in the sun, maybe not to specifically get a tan, but certainly without any sense that sunscreen might be appropriate or necessary. Then cue also a bikini shopping trip for a trip to the Cape with my boyfriend (that era's future Mr. Haggis that wasn't) during which I looked at myself in the unforgiving mirror and said, "F*@# it. I'm sorry, but brown fat just simply looks better than white fat," and started tanning again for my trip.

Never mind that back in 2001 I decided I was going to Mystic Tan myself into oblivion in the summer and then attempt to channel Uma, Nicole Kidman and Cate Blanchett during the winter. You know; "winter white." By that time I had come to the tearful conclusion that skin starts to look old long before you feel old and that maybe it was time to stop kicking the sh*t out of my poor epidermis. Unfortunately, the damage (thank you, 1986) was already done.

So although I wear sunscreen (Mustela zinc oxide-based for babies, actually) and advocate the use of sunscreens as if they are condoms, I had long-since earned that forehead lesion before last week. Now I'm on the every-6 month check up schedule, and all I can do is tell you kids to stay in school, eat your greens---and most of all, wear sunscreen. :)


ps...Did I mention that some of my eyebrows and eyelashes are growing back in WHITE? Not gray, not blond. White. So now with my new skin care regimen, I seek your prayers that it all turns out looking very "Swedish Snowboard Champion" rather than "Weird Albino Girl." Let's hear it for the (Very) White Girl look that will be on all the runways this winter season.

Thank You For Your Support

I have a very important milestone to share with you today. It is perhaps one of the most significant days in a woman's progress through a stem cell transplant.

I speak, of course, of finally getting to wear a bra again.

Once I had the Hickman put in, my whole upper chest area hurt, almost to my shoulders. One reason was the two inch insertion scar, another was the general subcutaneous pain from having some tubes in there. I gave bra-wearing a couple of feeble attempts so I'd at least have somewhere to stick the protruding tubes, but it just hurt too d*mn much to have the straps right over the scar area. Never mind that the tubes ended up itching my boobeles while stuffed in said bra. Fuggedaboudit.

Once the scar healed a bit I tried again. But by that point my skin was flaking off from chemo aftereffects, so I was itching like crazy and not enjoying the added irritation of the supporting undergarment. Fuggedaboudit again.

So for the intervening 4 weeks I have been revisiting 6th grade (okay, 7th grade), (okay, kill me now, 8th grade too) and wearing a tanktop (= undershirt) under my shirt. It's worked pretty well, except for the fact that I only wore clothing that could accommodate a tanktop underneath, and I'm certain people were starting to wonder if I'd lost the plot from a fashion perspective (assuming they haven't wondered that for two decades...).

But today, my friends, the bra is back. Reunited and it feels so good, baby! No more fears of inappropriate nippleitis when in the very cold Dana Farber clinic. No more avoidance of white t-shirts. No more feeling like a 6th grader.

Check me out:

The HIckman Review: Thumbs Down on Getting it Out

So. I got the Hickman out today. I do NOT recommend the procedure to anyone.

Notwithstanding my ill-advised foray into the previously-discussed google territory, this was still an unpleasant experience, to say the least. I knew I was in trouble when the PA (who was really great, regardless of said misery) said, "Well, the good news is that your body heals really well. The bad news is that you've really healed right around this, so I'm going to have to cut a little bit to loosen it up and dislodge it."

Gulp.

It turns out that all my fears of pulling the line out accidentally were unfounded in the extreme. I knew I was in further trouble when she said, "Yup. This line wasn't going anywhere. You could have pulled all day. It's good and attached."

This is probably a good time to remind you that the only substance I was on at the time was local lidocaine. I do blame the BBDD for his offhand remark, "It sounds pretty simple, so you'll probably be out in like 20 minutes, huh?" I jokingly yelled, "Don't jinx me, dude!" When it was all over he said, "See? It was only twenty minutes." I replied, "Yeah, but 17 of those, she was cutting me open and scraping out my vein! I blame YOU!" Apparently I had been doing a good job of not telegraphing my physical and mental situation throughout the procedure because he had no idea I was in hell for the entire time.

After the first 5 minutes made it clear that there was going to be some cutting and scraping, which hurt no matter how much lido she was injecting, I started feeling like I was going to barf or pass out. So I just started talking to myself and staring at the ceiling: "OK sister, you better shut this sh*t down right now. No barfing. No passing out. It'll be over soon. Suck it up. @#$%%^&*^^%$$!!!! No wimping out! You are not a weenie. Do not be a weenie. You gotta shut this drama down now." And so I went to my special place in my head where I am me, yelling at me in a somewhat Mr. T kind of voice, expressing disdain for anyone who needs to barf or pass out from pain. Pretty sad that Mr. T is in my Special Place yelling "Eat your greens! Stay in school!, but sometimes you just have to do what you have to do, the A-Team be damned.

So the good news is that Mr. Hickman is gone. Although, remember all my excitement about showering without him? The bad news is that the only caveat for my Hickman wound is the following:

"Do not bathe for two days." Aaah, Hickman: Gone but not forgotten.

Farewell, Mr. Hickman

Darlings, tomorrow we can all say goodbye to the faithful yet annoying Mr. Hickman, of Hickman catheter/central line fame.

Yes indeedy. He's been around for almost 50 days and, having done his job, it's time for him to go. Especially since my counts are now at a point where I may need only a few more transfusions to get over the hump. I wish I could say that Mr. Hickman and I have been having lots of naughty fun recently, but sadly, the only thing I'm doing in bed is drugged-out sleeping. I've been feeling like warmed-over sh*t for the past several days with low-grade fevers and random malaise, more than likely due (says Dr) to infections of the line, which are a common occurrence. So it's time for him to go. I'm happy that I'll finally be able to take a shower without wrapping half my torso in Glad Press-N-Seal and Industrial Medical Tape to keep the line dry. I'm happy I won't have to keep telling Bambina to "be gentle with Mama" so we don't accidentally pull the line out. (Believe me, no one wants to see that). I'm happy I won't have to look at a plastic tube coming out of a hole in my chest every day. At the same time, a part of me will miss him, kind of like that cheating ex-boyfriend we've all had, where you're simultaneously thrilled to be rid of his issues and yet unable to fathom your life in the near term without him. He was a son of a b*tch, but he was MY son of a b*tch.

Now, should you find yourself in the unlucky position to need any kind of contraption that is half in/half out of your body, for god's sake kids, do NOT google anything about it. Seriously. I breezed through the insertion in the OR because I specifically avoided any and all documents describing the process by which the doctors insert it. I knew in general, but I didn't see diagrams or read about calamitous results of medical errors. I just showed up and said, "Do your thing." Well, actually, I said, "I'm going to be drugged up, right?" But you get my drift: NO GOOGLING medical procedures. If you are not a doctor, don't read anything meant for doctors. As if competing to win Medical Scrabble, they notoriously tart up their documents with words like "erythema" which just means "redness." (I know this because I saw my file on day 6 or so and was alarmed to see that I had erythema of the line exit site. Luckily my nurse filled me in before I started writing my own eulogy). Anyway, back to the google docs: they will only scare you, especially when you see that your doctor is your own age or younger. You think, okay, I could have been drinking Milwaukee's Best with that kid only ten years ago before he got hammered and peed in a closet instead of a bathroom--and now he's going to insert a tube into my superior vena cava?!! Not bloody likely!

Having said that, I was fighting insomnia one night and just (as my bro would say) "for sh*ts and giggles" looked up "hickman catheter removal." What can I say? Stupid is as stupid does. I am beside myself with thoughts of this procedure which, in layman's terms involves nothing more than some lidocaine injections, a snipping of the stitches, and a gentle tugging on the line to pull both parts out of the veins, then pressure to stop air getting in and blood getting out. Go home soon thereafter. But what did I do? Yup, I read a medical document. Wherein I learned that a catheter incorrectly pulled can cause an embolism and death. Thank you, UCSF you b*stards!

So the good news is that Mr. Hickman is going to be history tomorrow. The bad news is that I'm going to spend the entire time hoping that Doctor Youngblood doesn't pop me an embolism in his rush to get home and watch a High School Musical/Aquamarine double feature with his friends Avril, Britanee, Josh and Devin.

If you hear from me by Friday night, then you'll know it all turned out okay. Or you could always google news for "hickman embolism" and see what comes up. Kind of like what our dear departed Southern relative (let's call her Aunt Oma) used to say when we were getting on an airplane: "Have a safe trip, bay-buh. I'll watch the news to make sure you git there okay."

Well, Shut My Mouth

It's update time.

My appointment went well today. The big scary test results I was anticipating are not back yet, but my blood counts are up enough that they are not too worried that the donor cells might not be winning the battle with my old, busted ones (whatever ones were left post-chemo that is). So it was a good day.

On the flip side, however, I've decided to limit the number of posts I do on this whole process, both in number and content. At first I found it to be a fun way to share all the weird, interesting and kooky things that go along with stem cell transplants. Certainly, there was a definite element of tracking my progress, but my intention was less to have a weekly health journal and more to attempt to find the humor, oddity, ridiculousness and inspiration in such a situation. But now I feel like I've crossed the line into "Dear Health Diary" territory and it's not where my best work lies. It's also not where my sanity lies.

A stem cell transplant is very much a marathon rather than a sprint, so while weekly blood counts and general health improvements are important milestones, they really aren't the core "stuff" of getting through it all. And focusing on them just serves to make me superstitious, anxious and obsessed with too much granular detail. My counts are up. Yay! But there are still about nine very real ways I could die unexpectedly by October. So it's less helpful for me to focus on weekly counts than it is to focus on more interval-type milestones. The chimerism test was indeed one of those big milestones. If that comes back too much less than 100% I've got a lot of 'splainin to do; so it made sense to write about it. But reporting in weekly is having a negative effect on me for a couple of reasons:

First, if I rejoice over every 10K jump in a blood count and think life is peachy, then I also have to get emotionally involved in whatever feelings a 10K decline would engender. And I'm seriously not interested in doing that. Like they say in Hollywood, "Don't believe your own press." If I get all giddy about the weekly good news, then I have to get upset if I get a week of bad news. I rode that rollercoaster for several months last year, and it's a ride I never want to go on again. I'd rather just accept every result for what it is: a result. Not a great one, not a bad one, just a result that will, cumulatively, point the way to next steps.

Second, some days I just get tired of being a disease. As ridiculous as it sounds from someone who just spent months blogging about it, I don't always want to talk about it. In fact, most days, I pretty much don't want to talk about it. I just want to be me, albeit with my current limitations, rather than the person you feel you have to talk hematology with. And, in all fairness, in putting it out here, I've invited people to talk about it with me with no real ability to say, "Not today, thanks." Or in the case of the person who said, "I'm sure everything will go well; but what if it doesn't?" there really was no response to be given. How do you say, "Wow. That is a line of thought we just don't engage in, thank you." or "None of your business" when I've been shilling my story for months now online for the world to read? (well, at least for the ten of you!) I might think that's an invasive question, but I'm thinking that me posting all this stuff on here gives the impression that it's not, that I'm really cool with being public about everything. The truth is that I'm not. There is a whole slice of my mental and emotional world that I don't blog about (duh) because the journey through a transplant (or any major disease or procedure for that matter) is a very personal thing. You can be surrounded by people who love you and help you, but there is a very real element of the process that no one can help you with. You can talk with your loved ones about what to do should things not go well, but to mentally prepare yourself for that possibility without allowing it to feel like a probability is a very solitary journey. Kind of like my response to people who asked if I'd "really thought this through" before the transplant: "Um, hi. If it fails, I'll be the one dead. I'll be the one leaving my kid without a mother. You can cross any worries about me not having given this the appropriate attention right off your list." Believe me, you don't sign up for chemo and stem cells without having gone to all the dark places you have to go beforehand, especially if you have kids. But, even having written that, I'm not particularly interested to have that detailed discussion with anyone, online or off.

So I'm going to stick to politics and smut for the foreseeable future, with periodic, relevant updates thrown in, but only if they include something funny or stupid to make them relevant to the blog. And in the meantime, tell me all about you, what's up with you, how life is with you. And I swear you don't have to ask me even once how I'm doing. Seriously. If there's anything to tell, I swear I'll share. Besides, as the Baby Daddy pointed out, "who's gonna buy your book if you've already written it all online?"

Good point.