October is Breast Cancer Month

I'd like to tell you a little story.

In 1998, on a summer afternoon, I found a lump the size of a US dime in my right breast, near the underarm side, when I was showering. I immediately called the doctor and was scheduled for an ultrasound and mammogram the following Monday.

By that Monday, the lump was the size of a US quarter. It was fairly hard to find even on ultrasound because it was against the chest wall, and buried in layers of muscle. I've always had good upper body strength, but that very strength made it hard for them to find the lump.

Eleven days later, I had a biopsy with excision, which means that they took out as much of the lump as they could find, and then checked it in the lab.

When I woke, the resident who had assisted with the procedure said, "You did have a walnut-sized lump there, and I don't really like the look of it, but we're going to do what we have to do."

I was astonished. I'd done everything right. There was no history of this on my mother's side of the family. I'd never taken birthcontrol pills or any other hormones. I ate right, I was active, I didn't smoke much, I'd nursed my baby for almost two years. I checked my breasts every day in the shower. How could this happen? How could it grow from dime to walnut in a total of 16 days from the time I found it?

The results of the biopsy came back; the cancer was already in end-stage, and had spread not only into the lymph nodes on the right side of my body, but also into muscle tissue.

At my next consultation -- by now it was September -- there was not only the head of the oncology department, there was also a legal aide and a chaplain present, because, as they informed me, I would need to make a will, since I would be dead by December.

I looked at the three doctors, the paralegal, and the chaplain, and I said "Fuck you, I am not going to die."

It was the first time I had ever used that word -- outloud or otherwise.

A treatment plan was devised, including chemotherapy, surgery with immediate reconstruction, chemotherapy, radiation, and chemotherapy again.

I consulted with the reconstructive surgeon and tried to explain my lifestyle and why I wanted the reconstruction done a certain way. I had assumed she listened.

I consulted with the oncology team and reviewed the drugs they'd chosen, including Taxol, which was a drug I was familiar with as a pharmacist. What I didn't realise at the time was that the treatment they'd planned -- in response to my rather pungent comment at the first consult -- was so aggressive that they had needed to get special authorisation to use the dosage they planned, because it was so very high.

Lynk was too young to drive a car at the time, and Cat has epilepsy, so she can't drive at all.

So every 10 days by the calendar, regardless of day of week, I made the two-hour drive to the hospital, sat for four hours with an IV catheter in my arm, to have poison run into my body. The IV cocktail consisted of diphenhydramine to help combat nausea and the horrendous headaches caused by the chemotherapeudics, as well as normal fluids to help with dehydration. And then I drove home.

I'd get nauseated just as the drugs began to flow, then I'd get sleepy from the benadryl, then I'd wake up a bit and feel itchy all over, inside my skin. Then I'd get some orange juice (shoving the IV pump computer around with me) and then they'd finish the drip, and I'd smile and say Thanks, and drive home. By the time I'd pull up to the house, I'd have a headache so bad that I could barely think or do anything beyond the automatic acts of habit.

The day after chemo would be worse. I'd be so ill that sometimes I'd actually wet the bed rather than get up and walk an entire 10 steps to the potty in my own bathroom. The second day would be better, and things would ease off a little at a time, and just as I felt all right, it would be the 10th day -- and back I would go.

I had to discuss breast cancer with my 13 year old daughter. I had to explain it. I had to reassure her but prepare her for the "just in case" scenario.

I had to discuss it with my best friend Cat, and explain it, and reassure but prepare her, too.

After the second chemo visit, all food began to taste like dog feces smells. I am not exaggerating for dramatic effect, that's a fact. The smell of any food cooking made me violently ill, not only with nausea but with a stabbing headache. I ate primarily bacon, carrots, orange juice, and coffee, until nearly Thanksgiving. Cat and Lynk would try to do what they could to cook when I wasn't around, since I could eat, just not bear to smell the cooking. Sometimes what they fed me would stay down and sometimes it didn't. I took iron tablets and a women's multivit, and smiled.

Three days after the fourth chemo appointment, my hair fell out -- all at once. That was one of the most traumatic things that EVER happened to me. I was 36 years old, and my hair was coppery, browny, silvery -- and to my waist. It fell out. That was the only time I cried, and I did it alone, out in the woods, leaning against one of a pair of cedar trees that we call the Sisters.

Two days later, the REST of my hair fell out. Think about that. I mean all my hair, body hair, leg hair, underarm hair, eyebrows and eyelashes. I couldn't even go outdoors without dark glasses, partly because there was nothing protecting my eyes from wind, but mostly because nothing protected them from even winter sunshine.

Then, because chemo strips all fast growing cells indiscriminately, the lining of my intestines and mouth vanished, and my mouth and gums were further weakened by the iron stripping that occurs, since "fast growing cells" also means bone marrow and red blood cells for iron transport. My teeth loosened and came out. Then the lining of my vagina vanished. I was in absolutely incredible pain, as the vaginal walls literally stuck to one another and tore each time I moved.

At the end of October, the first round of chemo was over, and I had three weeks clear, on high doses of iron, prior to my bilateral radical mastectomy surgery. The surgery itself went well, but the reconstructive "surgeon" hadn't actually listened to me, had dis-counted my own knowledge of my body's ability to heal (I'd surprised other practitioners in the past with speed of healing; I'm fast) and had dis-counted my statements about my lifestyle and my own medical knowledge and experience. But at least I did wake up with breasts, and I believed the "surgeon" when she told me they'd settle and my body fat would take over. They had taken both breasts, some chest tissue, some back tissue, all the lymph nodes on my right side, tissue from my right arm, and even some tissue from down my flank, just to be sure everything was gone. Even at that, I was informed, they weren't sure they had gotten everything, and they weren't entirely sure it had been worth it anyway. Staff at KU could certainly use some training in patient interaction, I remember thinking that, fuzzily, because I wasn't even all the way out of the anaesthetic yet.

I made them let me leave the day before Thanksgiving. However excellent the Kansas City Missouri Veteran's Hospital is -- and it is SUPERB -- the same can't be said for the University of Kansas Medical Center. That is the worst hospital I have ever been in, with the worst nursing care, and the least competent physicians and surgeons -- and it is dirty. So by the third day, I wanted out of that place. It had nothing to do with the fact that some yuppy female was in there having cosmetic surgery, and cried -- I kid you not -- non stop, all the time she was awake, and screamed -- no, I'm not exaggerating -- every time she wanted a nurse.

So, a neighbor (also a breast cancer patient, and also a medical practitioner) took time off work and came to pick me up and bring me back to the farm. I had drains that I was supposed to take care of, but they were positioned in such a way that I couldn't reach the ones in my back -- so every morning after her shift, this same neighbor came and took care of the drains. Why? Because KU had "forgotten" to put in a request to the VA to authorise home care. The neighbor realised this about Sunday (I was really sort of out of it) and she called the VA herself, ranted about KU, and demanded that home care be provided. The VA had a nurse out to the farm the following day.

I healed, not as quickly as I'm accustomed to, but faster than the doctors had thought I would. I'd been fitted for dentures and they'd arrived, so I actually enjoyed Yule that year.

I'd had horrendous headaches and body aches. The VA oncology nurses and I decided that this was actually withdrawal from the chemo drugs -- just like withdrawals from recreational drugs. The VA nurses also noted down other things that no one had ever mentioned -- the vaginal issue, the short term memory loss and gaps. Prior to my insistence that these things be tracked and studied not just in me, but in all cancer patients, it had been assumed that this was due to the "emotional stress" of a "catastrophic illness", but as they tracked this, they discovered that the chemo drugs themselves could interfere with brain function and could strip even brain cells.

But on Boxing Day, since I was by then recovered from the surgery, I started chemo again.

Every 10 days, regardless of day of week and weather -- and let me tell you, Missouri winters can be capricious, either snowy and frozen, or rainy and warm -- in the same day! Every 10 days.

I remember at some point, someone mentioning that I should be grateful I'd lost my hair, and not my life. That is seriously the closest I have ever come to killing another woman in cold blood. I can't explain why, but the loss of my breasts was bad -- the loss of four feet of hair was devastating.

But I didn't, and I drove myself, every 10 days, to the appointments, and drove myself home, and went back to sometimes not even being able to get out of bed, not being able to taste anything but a metallic dog-shit flavour to everything, losing the hair that'd started to regrow, and being so tired I literally couldn't take care of my family sometimes.

That lasted until spring, and then I had another four-week break, prior to starting radiation therapy. One thing they don't tell you about that little treatment is, they are going to make PERMANENT tattoes in your chest to mark the grids for focusing the Xrays. To this day, I still have a couple of those horrible little black dots on my skin. And it HURTS, it's not like a regular tattoo. I can deal with pain, but I almost jumped off the table with EACH of the 16 dots.

And then, every day, six days a week, for six weeks, I drove the two hours to lie for 15 minutes under deadly radiation.

After 5 days I had burns. After 9 days I had blisters the size of my palm on my chest, neck, upper arm, underarm, breast, and even on my back! Even I don't want to contemplate what my insides must have looked like at that point.

The burns hurt to the point where I'd take off my shirt to drive home. I didn't give a damn if I got stopped, either, because even cloth touching those burns was more than I could take.

That ended, finally. But I was sicker from the radiation than I had been from the chemo, and my hair fell out again. And I was lucky to keep any food down by then, but Lynk and Cat kept feeding me, so I kept eating.

I had another four week break, and then I had another six weeks of chemotherapy.

My immune system was so compromised at that point that I wasn't even allowed to attend school events for Lynk, so Mrs. Lloyd, the mother of one of Lynk's best buddies, who was also a teacher at this small country school, well, Mrs. Lloyd took Lynk to school events, and helped Cat so that she could go too, so that SOMEONE would be there for Lynk's special moments.

Then I had nipples created for my breasts, but the funny thing was, when the VA surgeons saw what the KU "surgeon" had done, the first words out of the mouth of the poor inexperienced resident? "My god, what did they do to her!" Then he blushed and apologised. I told him, "Honey, you hit the nail on the head."

And then, one year to the day from the time I found the dime-sized lump, it was over.

I hadn't died when they said I would.

I hadn't lost weight and become dangerously malnourished because my family wouldn't let me.

My hair was coming back again.

Two years ago, I got into the hands of a wonderful plastic surgeon at the VA. He undid all the damage that the "surgeon" from KU did.

Today, I have nice breasts. I've got hair, though it's only to the middle of my back even now, and it's a bit different colour.

Tomorrow I will be 46 years old.

I wasn't even supposed to make it to 36.