Category Archives: Wellness

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.

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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.

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

It’s not my first… this one makes number five since I started growing fibroadenomas in 1994, if you’re keeping score, which I suppose I am.

Lumps suck. Lumps are scary, not supposed to be there, infuriating, disempowering and defeminizing. In my case, so far, they have all come through pathology with labels that are always somewhat “unique,” but also, thankfully, always something other than cancer. But no matter how much my body seems determined to make ambulatory surgery with local anesthesia and IV sedation a hobby, I have never gotten used to it.

My last lump adventure was in 2005. It was a seven appointments long, high-stress, multiple-biopsied extravaganza which culminated in the surgical removal of two “areas of concern.” In the end, my “atypical apocrine-like cells” were passed around to several pathologists at two different teaching hospitals, and ultimately labeled as indeterminate and rare, but most likely benign anomalies.

So here I am with four surgical scars and deeply insulted breasts, but also with my (“most likely”) good health and an ever growing secret stash of four-leaf clovers and lucky pennies.

Deep breath.

Five weeks or so ago, I found a new lump. One would think I’d be downright religious by now about regularly checking myself, but with all my scar tissue and surgical troughs, I find it almost impossible to tell whether or not there’s anything different going on from month to month. I’m not very good about checking. But this sucker was big. A good inch and a half across. I was horrified as I realized, a day or so after I found it, that I could see the lump in a mirror at my gym, through two layers of fabric, mid bicep-curl.

These things get scarier as I get older. While I know that statistics are on my side and that the vast majority of lumps are benign, I also know that the numbers get slightly less favorable when lumps appear after age 40. I have not spent the past five weeks worried sick about cancer — I know that would be highly unlikely, and have instead used my negative energy worrying about surgery. But it’s still impossible to completely quiet the “what ifs.” They have a way of murmuring and whispering their way through each day until the final post-surgical pathology report comes in, no matter how much the odds tell them to shut the hell up.

As a doctor’s kid, I was well-taught to comfort myself with the knowledge that “medicine is all odds.” I know that getting ahead of myself with worry takes a physical toll as well as an emotional one, so for the most part, I try to focus on the procedure itself and the pain-in-the-assedness of it all, rather than get caught up in the possibility that I may be in for a longer, far more difficult journey in the case of any malignancy. So I tend to walk into pre-surgical appointments feeling fairly confident. “Yeah, I know the drill,” I think to myself, having been here several times before.

But then, something always cues those damned murmurings. The “Understanding Breast Cancer” poster in the exam room, or the sterile white room itself, which someone has attempted to soften with sparsely placed home decor, including a framed landscape scene of a barn in a field of bluebonnets. The wall art is oddly soothing in its serenity, until one notices its awkward placement near a needle disposal box marked “BIOHAZARD.” I appreciate the efforts to smooth out the rough edges of a sterile environment, but also find it darkly humorous.

Ultrasound. Unsettling statements like, “here’s what concerns us” and “possible solid mass” and “next week’s surgical schedule.” Mammogram and second ultrasound to confirm findings.

Fill the fridge with groceries. Take the kids swimming. Pretend there’s not a golf ball-sized lump in the left half of my swimsuit top. Wait, wait, wait, wait, wait.

Click on either title to link to:

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