Tenuous

I am happy to report that I have a strong, healthy heart.

Which is good, because my Kryptonian blood wants to make it beat really fast, all the time now, so I’m glad I’m built to handle the extra work.

My increased pulse is a symptom of myelofibrosis, and it frustrates me, as I have faithfully banked 4-6 cardio workouts per week for the past 15 years. My resting heart rate in recent months has been an acceptable (though rapid) 100 – 115 beats per minute, but at my appointment last week it was 130. My doctor sent me to a cardiologist, just to ensure that we don’t have anything new to worry about. He set me up for some tests, all the while reassuring me that it was all precautionary; not to worry, blah blah blah (“You haven’t satisfied your 2011 deductible yet, so that will be $1,078.41, please. Will you be writing a check?”)

This morning, I went in for an EKO (see price tag, above) without really knowing what to expect, until I saw the ultrasound machine. I smiled, remembering several screens similar to this one, that, back in the late ’90’s, revealed first glimpses of babies sucking their thumbs and kicking tiny feet back at the ultrasound waves. Back then, my only medical visits were related to my chronic status as a baby factory. When Richard, my tech, turned up the sound of my own heartbeat this morning, I fought back tears as I tried to process the stark contrast between my current medical situation and the visceral memory of burgeoning maternal joy that came along with that same audio track, first heard clearly at Week 11 of Pregnancy #1. That moment, 16 years ago, was surreal and overwhelming. That tiny, steady gallop provided the first undeniable evidence that Sam was really in there.

Today, my heartbeat made virtually the same “woosh, gallop, woosh,” that I remember from prenatal ultrasounds. I realized that over three pregnancies I must have developed a kind of Pavlovian response to that sound; one of gratitude for life, health and unlimited potential. I was unprepared for how much the same pattern, heard in such a different context, would jar me emotionally. What a difference a diagnosis makes.

Richard was kind, but didn’t say much as he moved the transducer around, assessing and measuring chambers and valves and ventricles. While I don’t know the specifics of which structure is what, I couldn’t help but wonder how it is that we depend so completely on the proper function of something that delicate, with its impossibly thin walls and fluttery valves. I thought about how hard I have pushed my heart in the gym over the years, never once worrying about its ability to rise to the challenge. But there it was in front of me, revealing itself for the mortal structure that it is, capable of so much despite its impossibly fragile appearance.

The line between health and illness is fuzzy and tenuous, far more so than I ever realized. I’m grateful for the fitness I had going into this disease, because I’m sure that all of those years of sweat and effort will make the difference in my ability to come out healthy on the other side.

My heart is fine, but I’m going caffeine-free to help bring my pulse down, a prescription that would have left me whimpering in a closet a few months back. But it seems a small price to pay to help keep things running at full strength.

A Shift In the Wind

So, it turns out that there was a reason my body started craving more sleep.

I never in a million years thought this would turn into a cancer blog, although I suppose nobody really sees that one coming.

Despite my 5-6 days per week workout habit, my belly started expanding last summer, even though I was losing jeans sizes at the same time. I also noticed some strange changes including a decreased energy level during my workouts and throughout the day, and sheet-soaking night sweats. I vaguely thought it was a combination of some kind of gastrointestinal problem and post-40 aging issues, so I ignored it for a while.

Two x-rays, one CT scan, 16 vials of blood and a bone marrow biopsy later, I learned that I have a mixed myeloproliferative disorder, or post-polycythemia vera myelofibrosis. That combination of large words I had never heard before means that I have a rare blood disease that is trashing my bone marrow. The growing belly turned out to be the result of, as articulated in my medical chart by my big shot doctor, an “amazingly large spleen.” Turns out that the spleen tries to take over the job of manufacturing blood cells when the marrow doesn’t want to anymore, and eats up all the extra cells made as a result of the disease, enlarging in the process. So while I’ve lost weight, I also look a little bit pregnant.

So, here’s the thing. There is no real treatment for this disease, aside from the possibility of bone marrow transplant. But, BMT is risky, so not generally recommended unless it is clear that things are not going well. I am currently being treated with a mild dose of hydroxyurea, a chemo drug that keeps my high blood levels in check enough to alleviate some of the symptoms. This drug has blessedly few side effects… I even get to keep my hair. There is a new drug, one made by Incyte, with the very catchy name INCB018424. This drug has caused significant buzz in the hematology/oncology world in that it seems to offer hope as the first potential treatment for this disease. Both of my doctors feel strongly that this is the right treatment for me, but it is still in clinical trials and not yet available.

I am very fortunate to live only three hours away from one of the finest cancer centers in the world; one that contains a pre-eminent expert on my particular disease. He is the lead researcher on the drug I need, and has offered hope that there may be an appropriate trial available for me this spring.

So, we wait.

I keep telling friends and family that this is the longest learning curve I have ever been on. The issue that challenges me the most is the question of how to explain it all to my kids. That is the main reason it has taken me this long to write about it. I truly believe that the best explanation always involves the truth, no matter how difficult, but this gets more complicated in a situation where even the experts don’t really know how this will go for me. I think that kids can tell when their parents are protecting them, and that their fears stemming from that silence will always be worse than the truth. I want them to understand what’s happening, but also don’t want to scare them needlessly. Sam keeps asking me to tell him that I’m “at a low risk for dying.” I believe that I am, based on my age, my history as a medical outlier (if there’s a category that involves 5% of all patients, I’m usually in it, a bizarre fact that is oddly common in my family.) However, I also need to stare realistically into the face of odds that I don’t like very much. I think that’s an important part of conquering this sucker.

For now, I’ll get my blood counts checked monthly with my local hematologist/oncologist, travel a few hours quarterly to see Dr. Big Shot, get out and listen to live music as frequently as possible, celebrate our kids’ successes and appreciate amazing support from friends and family that stuns me in its scope and seems to grow daily. I wish my kids would fight a little less and clean their rooms a little more, but in a way, it’s comforting that life goes on as usual.

The yellow bracelet on my left wrist inspires me to literally Livestrong, and I am determined to continue that throughout all of this. As Lance’s foundation manifesto says, “Unity is strength, knowledge is power and attitude is everything.”

And now, I’m off to fetch socks for Sam, conditioner for Abby and a library book for Hannah. Our regularly scheduled life continues.

Time to Wake Up

It is odd that only today I realized the irony of my blog’s name, “Why Would I Sleep?” given the fact that I essentially stopped writing when I started sleeping.

I suppose that’s fairly obvious, but it honestly never occurred to me.

While I am proud of the fact that I have had quite a few birthdays (44, *creak*) I fight the aging process with everything I have. I exercise obsessively and eat whole and healthy foods. (Full disclosure: I also love Mexican food, chocolate and the occasional margarita, but those things are allowable for both mental health reasons and overall deliciousness.)

When I chose the title for my blog way back in 2006, it was easy, because virtually all of my writing occurred after 10PM and often crept into the wee hours of the morning. Oh sure, I was chronically exhausted, but at the same time, those quiet, creative hours fed my soul in a way that made it not only worthwhile to trade sleep for computer time, but necessary.

Fast forward to Summer, 2008… otherwise known as “The Big 2,002 Mile Move.”

We sold our house. We lived in a hotel for two months. With three children and two cats. We moved, unpacked and collapsed. Totally worth the effort, but man, were we tired. We’re all deliriously happy here, but I’m STILL tired. Somewhere in there, my status as a person in her 40’s caught up with my late night habit and my desire to sleep eclipsed my desire to write.

But wait, that’s not quite right. The desire to write has never left me, and damn, do I miss it. But the time and energy seem to have slipped from my grasp.

Thank you, friends, for reminding me that life is too short not to follow your passions. For reminding me that, while there is never enough time, the ability to get through all the crap — the chores, the paperwork, the errands and most importantly, my capacity to be an effective parent to my children, are of massively higher quality when I’m pursuing the things that I do well. Thank you for reminding me why I love to write, and why it is important.

You know who you are.

And now, back to laundry.

For now.

This Is Ridiculous

Good lord, I haven’t posted anything since August? I need to get back in this habit. I miss it. But how to catch up?

My life over the past year and a half, Cliff’s Notes style: I found a new town and fell in love with it. Built a house. Moved my family. Now have impossibly large children, aged 14, 12 and 10. Cut off 10 inches of hair. Had surgery and recovered from it, but now have to wear a %$#@ing medic alert bracelet for the rest of my days. Gained ten pounds, lost ten pounds. Got the kids acclimated to a new town, new climate and new schools. Adopted a dog. Recovered from a nasty case of pneumonia a month ago. Helped my youngest brother raise a whole lot of money for Parkinson’s Research in our dad’s honor, and then watched said brother run the New York Marathon. Became an aunt for the seventh time (welcome to the world, Finnley Hawk!) Haven’t met him yet. Need to fix that. In 18 months, have consumed approximately 1,628 cups of coffee.

So here we are. Moving forward…

In Urgent Need of Decaf In School Supply Hell

I am fully capable of helping my children muddle their way through middle school drama. I can comfortably engage in spirited conversation on a variety of important and trivial issues. I have a reasonably high IQ score.

Why is it that hunting and gathering school supplies is so far outside my comfort zone?

I know how to make a list. The stores I frequent even try to simplify things for me by setting up gigantic, idiot-proof Back-to-School Zones containing everything each of my three children might possibly need in support of their return to their schools’ freshly buffed hallways and dust-free chalkboards.

But I H.A.T.E. this chore. I have had the grade-specific, administrator-approved, itemized lists all summer long. And yet I put it off as long as I possibly could because “MIssion School Supplies” gives me a headache and makes me whiny.

Why? I’ll tell you why. In fact, I have a list.

1.) Because in each of my years as a Parent Who Is Required By Law to deliver her children back to school with specific sets of items designed to optimize their learning potential, such as antibacterial wipes and #2 pencils (no mechanical pencils, please) I have never once managed to find everything on the list in one store. Always at least two. Last year, it was four.

2.) Even though I feel certain that there must be an efficient way to accomplish this chore, I always end up aisle-jumping in order to cross things off “The List” in order, for fear of missing something, only to return to each aisle no fewer than four times in search of whatever might be the next thing on the list.

3.) Since I have three children in three different grades, multiply the steps in item #2, above, by three. Do NOT suggest to me that I try to fulfill the needs of each child all at once while in each aisle, because that’s even worse. The order of the items in each list is not at all logical or consistent, and with three lists going at once… dammit, I’m starting to twitch.

4.) Some far more organized and less manic parent has always arrived at the store earlier in the week and exhausted the supply of, say, 1-subject wide-ruled spiral notebooks, of which I must purchase seven. Sure, there are plenty of notebooks, and I suppose if I were smarter I would just grab a handful, count to seven, and be done with it. But I feel obligated to figure out which notebooks are on sale so that I’m paying $0.99 each instead of $3.99. After digging through the mess for a while, usually as soon as I start feeling like I’m conquering the beast, I realize that five of the seven notebooks in my cart are not wide-ruled, but college-ruled. I sigh heavily as I throw back the rejects, only to discover that the vast majority of the wide-ruled notebooks remaining on the shelves are of the three-subject variety.

5.) Target doesn’t allow shoppers to drink vodka while perusing the school supply section.

6.) By the time I’m finished, my very roomy cart is full to the brim:

fullcart

7.) My total school supplies bill for three kids, including tax, is $163.87. My kids are very grumpy about the loot that they see hauled into the house, because I never return with the cool, multi-colored binders or Phineas & Ferb folders. I go for the boring stuff. Store brand pencils. Plain notebooks. Sorry kids, Mom is cheap.

8.) Ah, number eight. To any readers who may also be teachers or administrators, let me ask you a favor. Please tell me the truth. I’ll keep it to myself.

Folders. Some are paper and some are plastic. Some come with prongs, others have pockets.

The item on the list that says, “4 three-prong plastic folders with pockets in solid colors; avoid black.”

Level with me. This is a joke, right? I mean, I actually admire the hell out of you if it is, because it’s brilliant in its evil purity. But, honestly. I can find paper folders with prongs and pockets. I can find plastic folders with prongs or pockets. But in Store #1, there are no three-pronged plastic folders with pockets. In Store #2, I thought I found them! But they only come in… yep. Black. Finally, sweet success in Store #3. I almost wept. Different colors and everything. But. Seriously?

9.) Finally, I return home. I sort through every last eraser and sharpener, highlighter and red pen. But I know it’s not over yet. It really was a good idea, in theory, for the district to limit itself to one list per grade so as not to add to the August confusion, but we all know that there will be a second list, to be fulfilled after Back-to-School Night, when each teacher tells us what they really want their kids to bring to class.

I have heard tales of some stores that sell bundled packages of all the necessary supplies by school and by grade, and of other energetic districts where sharp-minded parent volunteers band together and offer supply kits for sale at Back to School Night.

Oh, I love this idea.

If anyone wants to help me figure that out for next year, please come find me. I’ll be at Target, buying more glue sticks.

schsupp

I Found A Lump, Part III

Click on either title to link back to:

I Found A Lump, Part I
I Found A Lump, Part II

The knockout drugs worked this time.

I remember the placement of the IV, oxygen mask, BP cuff, and pulse/ox monitor. I remember being wheeled into the operating room and moving myself from gurney to table, wishing I was anyplace else. I had a strangely casual conversation with the surgical nurses about my pulse and blood pressure, which were “surprisingly high for someone of my stature.” Ha. Yep, put me in a medical situation, and my normally healthy numbers hit the roof. Good news for me, according to the nurses — high blood pressure meant that they could give me more of The Good Drugs since my body would metabolize them quickly. I did not argue!

I don’t remember getting drowsy. I anticipated heavy eyelids and that dreamlike “I know what’s happening, but I don’t care” feeling — I have always been aware during sedated surgery, and remember much of it in detail. Not this time. I remember nothing. Totally looped.

I woke up later to too many faces above me, and a sense of desperation as I tried to will my way back toward consciousness. Dr. T. explained things and I wanted to listen, but I knew I wouldn’t remember. I heard her say that my blood was refusing to clot, and that they had pressure wrapped me. I quickly became aware of what would become my primary source of torture — and comfort — over the next 24 hours: a huge ace bandage wrapped several times around my chest and back, stubbornly pinching just under my left arm. I felt tape corners in my armpit and suppressed the urge to rip them off. I wasn’t quite awake yet, but was already thinking about how my skin would object when it was time to remove the tape and the gauze. Hospital budgets may be slim, but my nurses did not skimp on tape. Dammit.

Rest, ice, Darvocet. Repeat as needed. I got home and deposited myself on the couch, feeling relieved and fairly comfortable. But as the local wore off… not so much. Ice did nothing through the thick pressure wrap, nor did Darvocet. I called and spoke to the surgical nurse who said, “With the amount of surgery we did on you, you can double up the dose.”

The amount of surgery they did on me? Hm, that’s… interesting.

Dose doubled, and an hour later, still no relief. Too much pain and too much nausea. Got through to my surgeon at 10:00 PM and will forever be in her debt, because she called in a prescription for Vicodin.

Relief. Sleep.

I went back to the gym three days later. Ha! That was stupid. I had hoped it would make me feel better; more normal. But instead it made me feel weak.

I hate weak.

Spent most of the next week in elective time out, trying to sleep. I was hurting, sleep-deprived and generally not fit to be around humans.

At my post-surgical appointment with Dr. T., the stitches came out, and I learned that the pathology report read: “Benign ruptured cyst with granulation due to probable bleeding. No malignancy. Case closed.” There is no sweeter word than “benign.” I need a copy of that report. I should frame it.

It surprised me to hear that I need a medic alert bracelet that labels me, from here on out, as someone with “coagulopathy.” I am now considered a “free bleeder.” No bike racing for me.

My surgeon told me that she used “quite a lot” of electrocautery to stop the bleeding, and that it simply didn’t work. She said that she finally stopped trying; that’s when they pressure wrapped me. Evidently, I am also not a good candidate for sedation in the future. I am supposed to tell doctors that I need an anesthesiologist and should be knocked out at the next level with Propofol. The surgical team used the maximum amount of sedative, and while I thought I was out cold, they were concerned that I was far too alert. I talked to the doctor and nurses throughout the surgery and they thought I might try to get up, thrash about, or remember things.

I laughed and cringed as I asked my doctor, “What did I say?” She looked me straight in the eye with a half-smile and deadpanned, “You do not want to know.” I didn’t pursue it.

I’m not sure how to process the whole “free bleeder” thing. Dr. T. told me that I would likely have to advocate hard with any physician… she said that most surgeons “will take one look at you, see a healthy, strong person who doesn’t drink a lot or do drugs, is small-framed, and will roll their eyes and be generally skeptical of both the bleeding tendency and your strong resistance to anesthesia.” Even with complete knowledge of my bleeding disorder and my body’s tendency to need more drugs than most, they were very surprised by what actually happened.

So chalk up a couple more medical oddities for my Krypton File. I don’t like the idea that no procedure is “minor.” And the thought of something like a serious accident and my increased potential for just plain bleeding to death scares the hell out of me. But mostly pisses me off.

Eleven days out, I’m still not where I want to be. I am starting to feel more like myself again, thinking about things like school supply shopping, dinner, and catching up with laundry. As I told a friend, I’ll feel a lot better when my left breast no longer looks as if it was in a bar fight.

My new Medic Alert bling should be here by Tuesday.

And my morning coffee tastes better than ever.

I Found A Lump, Part II

Click on either title to link to:

I Found A Lump, Part I
I Found A Lump, Part III

Are you sure you have something scheduled here today?

Anxiety. Frustration. Rage! Lady, don’t make me come over there. I haven’t had anything to eat or drink since midnight, and I REALLY don’t want to be here, and you’re going to make me late for my surgical prep because you can’t find my name in your &%#$ing computer?

But what I really said, after chuckling nervously, was, “Yes, ma’am, I’m sure.”

I would have paid big bucks for a cup of coffee.

I usually start my day with a bowl of oatmeal or an egg white omelette with sauteed veggies and cheddar, and God help the poor fool who gets between me and my favorite extra-large coffee cup. So while I knew I would survive a couple of hungry hours before my 11:00 AM surgical start time, I was more than a little concerned about the possibility of caffeine-deprivation and nerves combining and exploding in the face of anyone who dared to wish me a good morning.

We straightened out the confusion, I signed a stack of papers, then I settled into a chair in the surgical waiting room, where someone sat and sipped a cup of hospital cafeteria coffee. How dare they? Normally, that slightly stale, industrial grade coffee scent offends me, but that day the very idea of anything resembling my favorite morning addiction made me want to jump up and run to the nearest Starbucks and forget the whole thing.

Ah, Starbucks. How I love you.

I was relieved to have finally reached Thursday, the day of surgery, so that I could get it over with, but now I wanted to be anywhere but here. All week when asked how I was feeling about things, I replied, “I really just need it to be Friday.”

I had almost forgotten about the first time I had a lump removed, fifteen years ago, when the local anesthetic didn’t work. The sedation drugs snowed me under enough that I could not speak or open my eyes, but I could hear and understand everything, as if I was awake. And I most certainly did not receive any benefit of the merciful “amnesia” that was supposed to come from one of the drugs. I remember it vividly. The surgeon began to cut, and I felt all of it, but couldn’t get the words out to tell them so. After a few seconds, someone saw my face and asked, “Can you feel that, Kathryn?” at which point I was able to squeak out a pathetic, “It hurts; hard to talk.”

They stopped, told me that I needed to tell them if I felt pain (gee, thanks, wish I had thought of that) injected more local anesthetic, and got on with it. But the memory remains.

I worried a lot about that this week. What if the anesthesia doesn’t work? What if I can’t say anything this time? What if nobody notices?

I also worried about my extremely agitating tendency to bleed. My brother and I have joked for years that we must be from the planet Krypton, with our odd medical anomalies. I have enough platelets for three or four people, and I take an aspirin daily to keep them moving along. The concern about bleeding is trumped by the worry over clotting; in my case, the benefits of the aspirin outweigh the risk.

Hard to quiet those damned worry voices. They’ve kept up their blasted whispering for a week.