July 14th, 2011 §
Sunday will be the four year anniversary of the day I had breast recontruction surgery after cancer. My tissue expanders were removed once chemotherapy was over and my silicone implants were put in. Last week I had my annual visit to my plastic/reconstructive surgeon and received the all-clear to now have a visit every two years. It’s always gratifying when the time in between visits gets longer; I remember when I was there at least once a week during the reconstruction process.
“Did you know it’s been four years since your surgery?” my surgeon asked. Immediately he chuckled, “Of course you know that,” he said, realizing my mental calendar was certainly more precise than his– of course I marked the days off in my head.
Whenever I sit in a waiting room I am instantly transported to that place and time. I sit and watch patients walking in and walking out. I can tell by hearing what the time interval until their next appointment what stage of treatment they are in.
I sit in the chair, the same one I did four years ago.
It’s the same chair, but I am not the same person.
My body is not the same.
There is continuity in that chair.
There is a story it tells me.
I wrote this piece to the next person who sits in that chair.
That chair you’re sitting in?
I’ve sat in it too.
In waiting rooms. Chemo rooms. Prep rooms. For tests. Surgeries. Procedures. Inpatient. Outpatient. Emergency visits. Routine visits. Urgent visits. To see generalists. Specialists. Surgeons. Alone. With friends. With family members. As a new patient. Established patient. Good news. Bad news. I’ve left with new scars. Prescriptions. Appointments. Words of wisdom. Theories. Guesses. Opinions. Statistics. Charts. Plans. Tests. Words of assurance. More bloodwork. Nothing new. Nothing gained. Nothing but a bill.
That feeling you’re having?
I’ve had it too.
Shock. Disbelief. Denial. Grief. Anger. Frustration. Numbness. Sadness. Resignation. Confusion. Consternation. Curiosity. Determination. Dread. Anxiety. Guilt. Regret. Loss. Pain. Emptiness. Embarrassment. Shame. Loneliness.
That day you’re dreading?
I’ve dreaded it too.
The first time you speak the words, “I have cancer.” The first time you hear “Mommy has cancer.” The day you wear a pink shirt instead of a white shirt. Anniversary day. Chemo day. Surgery day. Scan day. Decision day. Baldness day. The day the options run out.
Those reactions you’re getting?
I’ve had them too.
Stares. Questions. Pity. Blank looks. Insensitivity. Jaw-dropping comments.
Those side effects you dread?
I’ve dreaded them too.
Nausea. Vomiting. Pain. Broken bones. Weakened heart. Baldness. Hair loss. Everywhere. Unrelenting runny nose. Fatigue. Depression. Hot flashes. Insomnia. Night sweats. Migraines. Loss of appetite. Loss of libido. Loss of breasts. Phantom pain. Infection. Fluid accumulation. Bone pain. Neuropathy. Numbness. Joint pain. Taste changes. Weight gain. Weight loss. Some of them happen. Some don’t. Eventually, though? You name it. It changes. Temporarily anyway.
That embarrassment you’re feeling?
I’ve felt it too.
Buying a swimsuit. Getting a tight-fitting shirt stuck on my body in the dressing room. Having a child say “You don’t have any eyebrows, do you?” Wearing a scarf. Day after day. Wondering about wearing a wig because it’s windy outside and it might not stay on.
That fear you’re suppressing?
I’ve squelched it too.
Will this kill me? How bad is chemo going to be? How am I going to manage 3 kids and get through it? Will my cancer come back and take me away from my life? Will it make the quality of life I have left so bad I won’t want to be here anymore? Is this pain in my back a recurrence? Do I need to call a doctor? If it comes back would I do any more chemo or is this as much fight as I’ve got in me? What is worse: the disease or the treatment?
That day you’re yearning for?
I’ve celebrated it too.
“Your counts are good” day. “Your x-ray is clear” day. “Now you can go longer between appointments” day. “See you in a year”day. First-sign-of-hair day. First-day-without-covering-your-head day. First taste of food day. First Monday chemo-isn’t-in-the-calendar day. Expanders-out, implants-in day. First walk-without-being-tired day. First game-of-catch-with-the-kids day. First day out for lunch with friends day. First haircut day. “Hey, I went a whole day without thinking about cancer” day. “Someone asked me how I’m doing, I said ‘fine’ and I meant it” day.
That hope you have?
I have it too:
Don’t you think that would be amazing?
I think so too.
June 30th, 2011 §
It’s not that I didn’t like my right breast.
It hadn’t really ever done anything “bad” to me, except for the few times when it wouldn’t keep up with the milk production of the left one during the months when I nursed my children.
I didn’t harbor any negative feelings for it. In fact, I didn’t think about my breasts much at all except to chuckle at the sagging that inevitably comes with middle age and three pregnancies.
But all of that changed with four words: You have breast cancer.
The cancer was in my left breast: I needed a mastectomy. But what about the “good” breast?
Note the popular lingo: the non-cancerous breast quickly becomes tagged as the good one– like a good child who behaves and does what it’s told, the non-cancerous breast has faithfully done its duty and stayed healthy.
The left breast?
Well, that’s the traitor.
I had a decision: what would I do with the right breast?
Toss it out in biohazard trash?
With four words, that part of my body became a liability. I didn’t want that breast anymore, thanks. I’d rather have no breasts than one. Mentally, it was much easier to me to part with both, not live the rest of my life in fear of what might be lurking in that tissue.
To be clear, surgeons and oncologists explained that in their opinion, my chance of getting cancer in the right breast was no higher than my chance of getting breast cancer in the first place; I wasn’t necessarily at increased risk of breast cancer on the other side.
I had already been a statistical anomaly.
I had gotten cancer at 37.
I was BRCA-1 and 2 negative (but didn’t know it at the time).
In my mind I thought:
Go ahead and tell me that, but I don’t believe you.
And so I heard their words.
I understood their words.
But I didn’t believe them.
And time proved me right.
I opted for bilateral mastectomies. And when the pathology came back, there was abnormal tube proliferation and some cell dysplasia. Things were awry in my right breast even though nothing had shown up on the mammogram.
Now, yes, eventually I would have found the problems when the cell proliferation got large enough to be detected on a mammogram or MRI. And maybe my chemotherapy would have gotten these cells anyway.
But are you really going to take that chance?
Body parts become liabilities.
My perspective about my body has changed so much in the last four years. My body itself has changed so much too.
I’m not exaggerating when I say that, like aging itself, the side effects of removing my ovaries one year after my mastectomies has changed almost everything about my health as I know it.
I went to the kitchen just now and pulled out my binder of cancer records to double-check my pathology report to write this blogpost.
And there it says, quite plainly, that my cancer was 1 mm from the deep margin (chest wall).
A hair’s diameter.
A grain of sugar.
It always takes my breath away.
So many people link their happiness to pounds, or inches, or dollars.
I think part of my future might hinge on that millimeter.
I’m counting on it.
And moving forward.
December 30th, 2010 §
We are at my father-in-law’s house in Wyoming at the moment. On Wednesday morning, ambulances and emergency vehicles started arriving down the street. An EMT soon came to our driveway and said to one of our family members, “We have a lot of sick people. Can we use your garage for triage?” She of course said yes. “There’s been carbon monoxide poisoning,” he said, and returned to the scene.
Nothing happened for a while. We saw lots of vehicles arrive but didn’t see any ambulances leave with patients. Maybe it was a false alarm, we thought. We hypothesized what could have happened, how many affected people there could be. It was a brand new house, only occupied for a month or two. I’d seen a heating and cooling truck on the street an hour before; could that be related?
The emergency workers came back. “We need space to have them come inside and warm up,” one said. We readied the house, clearing space on couches, chairs, made sure we had mugs for warm drinks. Then we waited.
Eventually they started a slow and dazed parade the few hundred yards from their house to ours; one of the first was a young girl with blonde hair who looked stunned. She had snow-covered outerwear on. I asked her if I could help her take it off and if she was scared. She nodded. I reassured her that she was safe, everything was going to be okay. In the way that children do, she bounced back quickly, playing with a puzzle within minutes and laughing.
The grandparents, however, sat on one of the couches with oxygen masks on. They looked confused and pale. Each family member had a color coded tag with their carbon monoxide level on it. Fourteen family members had been in that house. The owners of the house had a few of their children and some grandchildren there for the after-Christmas break. They’d arrived to cold temperatures and cranked up their new heating system, all propane-generated. The heat didn’t seem to be working right. It cycled on and off quickly, wasn’t generating enough warmth for the large house. They’d used the secondary heat source– radiant heat in portions of the house (also propane-generated).
By Tuesday night some of the people in the house were vomiting, complaining of bad headaches. Of course, at high altitude headaches are common, especially after first arriving in town. Symptoms were dismissed as common illness, aftermaths from travel. The next morning, however, by the time the heating repairman was due to arrive, some family members were lethargic, having trouble getting out of bed in the morning.
The repairman arrived at the address expecting a commonplace heating issue. The second he stepped inside the house, however, the carbon monoxide detector on his belt loop began chirping. “You’ve got a carbon monoxide issue,” he told them, “get everyone out of the house NOW and call 911.”
The pieces fell into place… the headaches, vomiting, lethargy. Those in bedrooms closest to the boiler room were more severely affected. Usually infants, pregnant women, those with respiratory trouble, and the elderly can be more severely affected. And so, the fourteen family members and dog left the house that had been slowly poisoning them with toxic air.
Carbon monoxide binds with the hemoglobin in the blood more quickly than oxygen, making the hemoglobin unable to carry the oxygen the body needs. Without oxygen, of course, tissues start to die and eventually death will occur. Breathing pure oxygen after exposure takes the half life of carbon monoxide from 320 minutes to 80 minutes. The CO will be replaced with the oxygen it needs and poisoning will stop.
The medical team kept re-testing everyone using an oxygen saturation monitor (inserting a finger into a clothespin-shaped device, also known as a pulse-ox, or pulse oximeter). As the minutes and hours went by, their numbers came down. Some of them had gone straight to the hospital, others would later go to be double-checked after questionable readings or because of their age. At the hospital, blood tests are also used to check the percentage of hemoglobin that is CO.
Smokers will have a higher baseline percent than non-smokers because they have carbon monoxide in their blood as a side effect of smoking. The triage team had a tag for each person, recording each person’s current measurement. The cards looks like large luggage tags and had red, yellow, and green stripes indicating danger and safety zones. Those with higher levels would have to go to the hospital for monitoring. We kept the dog here while they went, still stunned at the turn of events.
They told the owner he wouldn’t be allowed back in the house. The repairman had his own level checked, and hypothesized about the cause of the problem — improper installation or blocked venting, most likely. “You won’t be able to go back in,” he told the owner. “We don’t want to,” the owner said through his oxygen mask.
I sat across from the owner. “Did the monitors malfunction, too?” I asked, curious how this brand new house could have been the location of such a dangerous situation. “The house doesn’t have carbon monoxide detectors,” he said, shaking his head. “The whole house runs on propane.” No one had told him he should have the detectors.
And so, that is the lesson I wish to share here today. Read about carbon monoxide. Educate yourselves about what conditions in your house can cause the toxic gas (the list of causes is more extensive than what I knew). Get carbon monoxide detectors installed, either by doing it yourself or in combination with your alarm system. Newer, self-intalled ones have batteries that last up to 7 years and units cost between $20 and $80 each. Placing them near your bedrooms is best.
Some people mistakenly believe that because they have smoke detectors they are protected from CO poisoning. This is not the case. The detectors are separate and detect different things. You need both.
Carbon monoxide gas is particularly pernicious because, unlike smoke, it’s not detectable by sight or smell. You won’t know it’s there. It can make you drowsy enough to go to sleep and never wake up.
Different states have different statutes about the installation of detectors in new dwellings. For now, it’s not national law. This means it’s up to you to protect your family. Each year reminders go out during daylight savings to check the batteries in your smoke detectors. Please allow me to use this space to ask you to go buy belated holiday gifts for your family: carbon monoxide detectors. It could be the best thing you ever do.
The family across the street was lucky: everyone will recover. There is still danger of long-term health effects from the exposure, but they are all alive, including their pet. They were lucky. But each year 400 Americans die, 20,000 visit emergency rooms, and more than 4,000 are hospitalized from carbon monoxide poisoning.
Please don’t be one of them.
** A few days after I posted this piece we saw the homeowner. He reported that the family was able to return to the house after the cause was identified and a temporary solution had been made. They discovered that the heating vents were blocked by extensive snow (2 feet) on the roof and chimney. The heating company has made a temporary pipe system to shunt the vapors outside. Also, they’ve installed eight CO detectors throughout the house. Given the extensive snowfall this year in the Northeast, it’s important to see how extreme weather can pose unforeseen dangers.