Sunday, January 31, 2010

On a scale of 0 to 100...

While my tumor was vacationing among the redwoods at the Genomic Health Labs in California, my surgeon was placing bets with me, and my oncologist, that my recurrence score would come back at 20 and put me square in that gray area of no definition -- the Intermediate Zone! On a scale of 0 to 100, the Intermediate Zone hooked in at 18 and zipped off at 32. To state the obvious, those patients who fall in line between 32 and 100 have a high risk of breast cancer recurrence, with a group rate average of 31%. The information gleaned in this testing helps the oncologist determine the proper treatment regimen to better their prognosis. Those in the intermediate group had a group rate average of 14%. And those in the low-risk group, (0 to 18 on the scale), had a group average of 7%. If everything aligned just right for those in the low-risk group, chemo or hormone therapy might not be a necessary part of their treatment options.

So, where did I show up on the graph? I came in as a dark horse, with a score of 16. My surgeon lost his bet. My oncologist, also surprised, called the lab to confer with one of the scientists. This was definitely good news. My score of 16 earned me an average rate of distant recurrence of 10%. I'd take those numbers to Vegas. I don't know if it's a fair interpretation, but I see it as a 90% chance the breast cancer is a personal anomaly and the risk of me getting it again is only 10% higher than someone who has never had breast cancer at all. Of course, I could be totally off base in thinking that. I also realize that regular mammograms and MRIs down the road will be utilized to see if I'm a wizard or a goat.

I have a copy of the report and it contains more than I can interpret, with verbiage such as "Oncotype DX® Breast Cancer Assay uses RT-PCR to determine the expression of a panel of 21 genes in tumor tissue. The Recurrence Score® is calculated from the gene expression results, with a range from 0 to 100." I have no clue what RT-PCR might be. But what does jump out at me from that word scramble are the words "21 genes". That's a lot of analysis. The report also noted the clinical study included female patients with Stage 1 or II, Node Negative, ER-Positive breast cancer. My club! My ladies! Myself.

So, I asked Dr. B., does this mean I don't need chemotherapy after all? Would estrogen-blocking hormones and radiation be enough to do the trick? She pointed out on the lab report that, while I was estrogen-positive and hercep negative, which was good -- I was also progesterone negative. This, in combination with the fact that the study doesn't take into account the size of my tumor, made her feel chemo should still be part of the package. I asked, "if it were you..." and she nodded yes. She was also comfortable with the prescribed four rounds of chemo, three weeks apart, being the proper dosage.

Okay. Let's get it scheduled. My only concern now was my worsening right knee. It was quite swollen behind the knee and it was painful to walk. Could be a baker's cyst. Could be something more involved. Dr. B. suggested I see my primary doctor to see if it could be treated before chemo started. Anything invasive during chemo could lead to infection and that was to be avoided at all costs.

I had a week for resolution. It was to be my worst week yet.

Saturday, January 30, 2010

No evidence...

We capped off the Christmas weekend by driving straight back from Des Moines, through the snow this time, the day after Christmas to a last-minute party hosted by Linn and John. It was a game night gathering, attended by friends and neighbors we knew and liked. A great way to put Christmas back in its stocking for the year and I still had Sunday as a day of rest, before winding up the year at work.

Just that fast, the December 30th appointment was upon me and I went directly from work to meet with my oncologist. There was a slight nag in the back of my mind that I could find out something really disturbing from the scan reports, but I wasn't rattled -- wasn't truly concerned -- that that would turn out to be the situation. I'm just superstitious enough to not beg trouble, however. I knew I should worry, just a little, so as not to invite surprise. Know everything on the menu, so to speak.

As it turned out, there were no fossils of small critters in my spleen or anywhere else. Whatever neighborhood small creatures went missing in my toddler days, there was no evidence I could be held accountable, other than those baby teeth marks in my brother's miniature turtle's shell, all those years ago. And to this day, I still have never tried turtle soup.

Nothing suspicious on the scans other than a couple of nodules in the lungs. Could be leftovers from childhood infections. Could be scar tissue from various rounds with bronchitis. Now, they're noted and documented and serve as a baseline for any future changes. The only other thing of note was the basic wear-and-tear degeneration of the joints: shoulders, lower spine, knees (no surprise there) and ankles (really?). I had been treated for lower back pain before, so I knew I had a disc problem. My ankles were always weak enough to make me a really lousy ice skater and a worse toe shoe dancer. My shoulders don't bother me, thank goodness, but I was surprised my elbows weren't mentioned after all the years I played tennis and racquetball, plus a little softball. Ergo, the junk knees. The kickboxing and zumba classes I had taken in the past couple of years probably hadn't helped either.

My little bit of worry had served its purpose and warded off bad news. But the most interesting report was yet to come -- where I ranked on the tumor lab's scale of recurrence likelihood.

Friday, January 29, 2010

Dear Santa...

If there was one thing I really wanted for Christmas, it was to be a witness that morning when our granddaughters would wake up bright and early and leap from their snug little beds to zip down the stairs and see if Santa had come. Who can forget their own childhood excitement on Christmas morning? Who wants to miss a single moment of that in our descendants? Such a short shelf life and I wasn't too thrilled that Mother Nature wanted to cheat Jeff and me out of it.

It's just a 5.5-hour drive from the northern suburbs of Chicago to the northern suburbs of Des Moines, but in between is a deadly dull stretch of I-88 and I-80 that is noted for ice and snow and white-out conditions on a regular winter basis. Two Christmases ago, we delayed leaving 'til Christmas Eve because of bad weather the day prior, and I counted 115 abandoned trucks and cars, some overturned, in the ditches on the Iowa side of the border. It's a trip that calls for wise decisions.

Christmas 2009: the forecast was for rain, turning to ice and snow on Christmas Eve. I went into work at 6 am for a half day, and had everything ready to be loaded into the car if the weather allowed us a window of opportunity. Scott called and told me it was just raining in Des Moines and it wasn't expected to snow 'til late afternoon, so if we were coming, leave now. I made it home in record time, and we had the car loaded and on the road by 11 am. It rained nearly all the way and, from portal to portal, the temperature hovered between 33° and 35°, without ever dipping down to 32°. One degree away from a skating rink. Thank you, Santa.

We had our white Christmas in Des Moines, later that evening, as the snow began to fall hours after we had arrived. We were excited. The girls were excited. Lucy, their dog, was excited. Christmas Eve, Chloe left a very thoughtful letter for Santa, along with cookies and milk. She and Livy left their shoes on the fireplace hearth for Santa to fill with candy, as the Elf on the Shelf watched over them. They had their baths and opened their new Christmas pajamas, as is their yearly tradition, and then it was time for a story and goodnight kisses. It's the one night of the year they're eager to go to sleep. It just makes Santa come faster!

With the kids asleep, we adults played games, ate too many cookies, watched a movie and then went to bed so Santa could finally arrive. Christmas morning was straight out of "A Christmas Story":

Wow! Santa came.
He ate the cookies and left a note!
Oh, boy.
Mom! Dad! Look at this!
An American Girl doll!
It was just what I wanted!

I felt great. Bad knee still, but who cared. I got everything I wanted, except for, well, you peace.

Thursday, January 28, 2010

The big picture

The couple of weeks flew between the oncologist appointment and Christmas. In between, work was hectic. Additional projects, big gaps in staff as use-them-or-lose them vacation days came into play, plus our magazine printer shut down two days for Christmas and two for New Year's. It just all tended to put a little more rock into Jingle Bell Rock. My CT imaging and full-body bone scan appointment were both scheduled for the morning of December 21, three hours apart. I had to be there at 7 am, which meant I got to drink my first bottle of berry-flavored barium at 4 a.m. Talk about a rude wake-up call.

Chilled was definitely helpful, but I couldn't down it in one chug. Took three good gulps. Two hours later I ingested the second bottle. Boy, have to wonder how awful the vanilla and banana flavors must be if berry was ranked tops.

There is nothing painful or invasive about these two tests. After the CT test, I left, grabbed some take-out breakfast and headed home for a few hours of wrapping Christmas gifts before returning for the bone scan. It seemed like a long process, but was probably about 45 minutes, laying flat on my back. I was reminded of the movie Independence Day, as the flat, wide black panel camera -- looking like the huge alien ship in the movie -- hovered about two inches over my face and began slowly moving down. I closed my eyes, peeking occasionally to check its mileage.

I was actually looking forward to, rather than dreading, the results of this particular test. What kind of information would it reveal? I've never had a broken bone -- yet -- but what odd little changes -- or mysterious things -- might be discovered. A long-missing roller skate key? There was evidence from when I was a toddler that I had bitten into the shell of my brother's miniature formerly live turtle. What other small animals might I have tried to eat before the age of two? What fossils might be residing in my organs?

All would be revealed on December 30 at my next doctor's appointment, along with the results from the lab on my tumor analysis. But first, there was work to be done, and a holiday to be celebrated with the kids in Des Moines, and a monster of a snow storm that would try to prevent that.

Wednesday, January 27, 2010

Christmas cookies and a barium cocktail

Before I left the oncologist's office, she wrote out orders for two more tests to add to my list: a CAT scan and a full-body bone scan, the latter requiring a barium cocktail. Yum. Ostensibly these were to be baseline tests for future comparisons in follow-up visits. If there is scar tissue or nodules from long-past infections, they need to be noted and watched for changes down the road. Of course, I also immediately thought that if there was any secondary cancer setting up residence elsewhere within my housing -- sort of like cancer's winter home in a southern clime, like my liver -- this would ferret it out. That's worth the barium torture.

Also, she wanted me to have an H1N1 inoculation. Swine flu is no treat for a chemo patient. I was also equipped with a list of "cranial prosthesis" providers and an appointment to return on Dec. 30 for the results of my tumor analysis from the lab, and to discuss my most likely chemo package plan.

So, basically I had the full month of December to lead a normal life, other than a couple of tests. No treatments until January. And the good news was that, after six weeks of hurting, my left knee seemed to have healed itself. The bad news was my right knee decided it was its turn. I had swelling behind the knee and intermittent pain. Equal treatment for identical parts. Hopefully it was a temporary situation.

I dove into Christmas preparations. I accomplished my shopping fairly easily with crack-of-dawn excursions on Saturday mornings at participating stores. Checked that off the list. I began my insane, obsessive annual Christmas baking marathon, but reduced the usual 22 batches to 17, as I had a later start this year. I considered simply not baking, but it's become such a big part of our family holiday gatherings that I couldn't abandon it. And I think, in the back of my mind, I actually thought that if something went sour in my treatment and this turned out to be my last Christmas -- I know, morbid, but really, we never know which could be our last Christmas -- I didn't want it to be the one year I didn't bake. Got the Christmas cards in the mail. Put up some pitiful lights and some greenery outside. Jeff put up the tree about a week before Christmas and instead of the usual 500 ornaments I decorate it with, I put up about 50 and called it a day. I figured I'd be putting all of that away in the middle of treatment and didn't want to make it an overwhelming job.

The following week, in one afternoon, I got my lab work and H1N1 shot, had my last check-up with the surgeon and picked up my two barium bottles for the scan. I was offered vanilla, banana or berry. I asked which had the best feedback. Berry. And make sure it's really chilled, I was advised. Yep, that ought to up the delicious factor, but chilled vs lukewarm sounded exactly right.

I scheduled the two scans for the morning of Dec. 21 -- an early Christmas gift to me -- and concentrated on the joys and the music of the holiday season, for I had many blessings to celebrate, and loving friends and family to celebrate with. Who could ask for anything more?

Monday, January 25, 2010

That just can't be right!

Even though my tumor was going to be sent packing to California for a little R&R, the oncologist felt 99% certain that the lab results would confirm that chemo and radiation would be the appropriate treatment options for me. However, she told me, insurance companies love the lab testing because sometimes it reveals a surprise, and they celebrate when it turns out that they don't have to pay for chemo. No kidding. Insurance companies celebrate when they don't have to pay for cough syrup.

The lab results wouldn't be back for at least two weeks and with the holidays approaching, most likely we wouldn't start the chemo sessions, should it be determined that they are necessary, until the first week of January. That was good. I'd have the entire month of December to feel good and to get all those Christmas errands accomplished.

I would have four chemo sessions, three weeks apart, followed by seven weeks of daily radiation (15 minute sessions, Monday through Friday). Oh, and by the way, I would lose my hair. For sure? Yes, pretty much guaranteed with this combination of two drugs, and it would start some time after the first session, she informed me.

Well, okay, I had been warned about that. And it's all right. At long last, I would find out if I fell into the smooth or lumpy head category. There was no way of knowing before this. I was born with a full head of hair. So, there would be the great "reveal" some time in January. The oncologist told me that insurance covers part of the cost of a wig and wrote out a prescription for it. I looked at what she wrote and started laughing. Cranial prosthesis? I immediately envisioned a Viking helmet with two blond braids. Yoho! A nice Brunhilda look would be quite a departure from my short spiky "do".

Assuming the usual good news/bad news pattern of previous conversations, I piped up with "at least I'll lose weight with the chemo treatments." No, she smiled sadly at me. Worse yet, with the hormone therapy that I'd be on for five years after radiation treatments concluded, all the patients complain that they gain weight. Noooooo! C'mon! That just can't be right. Chemo = skinny. Who goes out and buys "fat clothes" before starting chemo.

You know, this cancer thing was starting to become annoying!

Sunday, January 24, 2010

Bon voyage.

I first spotted her in the hallway behind the receptionist's desk and I thought, oh how nice, the doctor brought her daughter to the office today. I came to find out later that she is a mother herself, to a five-year-old little girl. It's not just that she's young -- which is fine with me, she's up-to-date on the latest treatment options -- but she has a cherubic face and warm smile, and such a sweet disposition that I immediately felt comfortable with her.

I was her last appointment of the day and she spent at least an hour and a half talking to me. It was sort of a good news/bad news conversation. Biopsied tissue is tested for certain tumor markers -- proteins that may be found in the cancer cells. The status of these tumor markers helps predict how the cancer will respond to specific treatments. They refer to it as being hormone receptor positive or negative. My results indicated I was ER+ (estrogen receptor positive). Knowing how tumors love estrogen the way that coyotes love rabbits, I responded, "Oh, that's bad." No, she said. That's good, because I will respond well to hormone treatment that blocks or decreases estrogen. Frankly, I was surprised, at my age, that I was pumping out any estrogen at all. The upshot was that being ER+ meant that I would fall into the group whose tumors appear to grow less aggressively than those that are HR-. Definitely good news.

On the other hand, I was HER2 (a protein receptor) negative. "So that's good?" Well, yes, it is good. But, for HER2-positive patients, the really good news is that when given Herceptin therapy in combination with chemo, they are responding better than ever before. And while that doesn't apply to my situation, it is definitely good news for the HER2+ group.

The oncologist wanted to send my tumor for more extensive analysis to a lab in California called Genomic Health. I stopped her right there. The hospital still has my tumor? Oh yes, she replied. They keep them for years. So, there's a little box in storage with my name on it and inside that box is a quivering little tangelo-like mass that's going to be sliced and diced and then returned back to its home base? Yes. Precisely.

I had to absorb that. While I was sleeping at home (or sleeping on the job), a piece of me would be winging its way to California -- accumulating round-trip air miles. I hoped it had a wonderful time.

Friday, January 22, 2010

Sorry. You'll have to take a number. The list is full.

So, if I had compiled a checklist from discovery of the lump over Halloween weekend to the first of week of December, it would have looked something like this:
1. Get lump checked out
2. Lump checked. OB/GYN hates lump
3. Get mammogram
4. Get ultrasound
5. Get biopsy
6. Get another mammogram (going for a new record in flattening)
7. Get biopsy results: Bad, bad lump
8. Get breakfast (well, I'm sure I ate somewhere, sometime in this process)
9. Get office appointment with surgeon
10. Get surgery appointment with surgeon
11. Get EKG for surgery
12. Get blood work for surgery
13. Get MRI
14. Get radioactive dye for surgery
15. Get gassed for surgery
16. Get surgery
17. Get well
18. Get back to work
19. Get post-surgery inspection
20. Get post-surgery infection
21. Get antibiotics
22. Get infection follow-up appointments with surgeon
23. Get name of oncologist
24. Get appointment with oncologist

Of course, also on my mental list was get Christmas shopping done; get Christmas baking started; get Christmas cards written; get Christmas tree up and decorated; get Christmas presents wrapped. But those would have to slide into a lower berth on the list, because, let's face it, the list was filling up fast.

At last, I was able to cross off the appointment with the oncologist. My OB/GYN not only recommended her but LOVED her. My surgeon agreed that she was an excellent choice. I was eager to meet her. I figured she'd be some kindly, gray-haired motherly type.

I figured wrong.

Wednesday, January 20, 2010

Funny seeing you again!

I left the doctor's office and drove to the Kona Grill restaurant to meet friends from the company where I had been ensconced just five months prior. I'd been looking forward to this night. Cocktails and hors d'oeuvre with a great group of women was a definite mood lifter.

These ladies weren't just former co-workers. Over the years, we had traveled together to trade shows; enjoyed a long weekend together in Florida; and three of us -- Laurel, Helen and me -- had even toured Rome together while attending Helen's daughter's wedding there. And even with my 12 years of employment, I was the least tenured among this group. Laurel recently earned her 25-year gold watch, and the others will be adding to their watch collection in the next few years. This team has borne witness to all of life's milestones together -- weddings, divorces, birth of children, death of parents, death of siblings, illnesses. Friendships were forged that wouldn't be shattered by a little thing like one of us, namely me, leaving the company.

We have girls' nights on a regular basis and this was one of those occasions, my first since the surgery. But as I crossed the parking lot, I felt that chill grab me again and a sudden sense of fatigue. Rather than a cocktail, I was ready for cozy PJs and a warm bed. I hung in for a couple of hours and had my usual good time, but the fact that both my head and my eyes hurt added up to one thing. I had a fever.

As soon as I got home, I went right to bed. In the morning, I felt okay and went to work, but by noon, I was hot, then cold, and completely out of steam. I went home and waited for a sore throat and runny nose to arrive. Surely they'd be there any minute. But they never arrived. No cold symptoms. No upset stomach. Just the fever. By Friday morning, when the fever hit 103° and I still had no other symptoms, it suddenly dawned on me. I didn't have the flu. I had an infection.

I looked at the incision areas and wasn't surprised to see that the lymph node incision was flaming red and the redness was spreading. I called the surgeon's office and asked to speak to the nurse. She asked me if the incision was warm to the touch. Don't know. Let's see. I felt the site and sure enough, it was hot. I could have baked a potato on it.

The surgeon was doing what surgeons do -- surgering (all right, operating, but I like the sound of surgering). The nurse said she would page him and have him call me. And he did.

Thus, two days after telling me he'd see me in six months, I was back in his examining room. He aspirated the fluid build-up and was pleased to see it was clear, meaning the infection was topical and not internal. I started on antibiotics and by Saturday, the bump was gone, the fever was gone, the headache was gone and all was right with the world again.

Tuesday, January 19, 2010

I was feeling great 'til I saw you

I should probably mention at this point that every doctor, every nurse, every technician, every physician's receptionist I've met along the way in this journey has been exceptionally kind, helpful, friendly and gentle in nature. Maybe it's a job requirement that if you deal with cancer patients, you must exhibit a personality. Not a dud in the bunch. And I've spent enough time in waiting rooms throughout the years to observe employee behavior. The odds are against you. Sooner or later, you'll meet Surly. Or, Could Give a Hoot. Or I'd Rather Be Having a Tooth Drilled Right Now than Working Here but It Pays the Bills.

You know. You've met them. And maybe, before I hop off this train, I'll meet one too. But not yet. Seems like a small thing, but it's not. It's huge. On one of my walks through the hospital hallways, it occurred to me that I'm going to become very familiar with finding my way through these corridors. It's going to become routine. And so will signing my name in the doctors' appointment books and taking a seat in the waiting room. Having someone greet me with actual recognition, call me by name, tell me they like the color of my coat, my new haircut, the new purse I got for's an acknowledgement of me as a person, as opposed to me as the cancer patient.

But it was me the cancer patient who returned to the surgeon's office for the follow-up visit. He's a very pleasant, laid-back kind of doctor with a nice bedside manner. Doesn't get rattled. Doesn't let me get rattled. He checked out the incisions and admired his handiwork. Everything looked good. How was I feeling? Great. No pain? Nope. Doing fine. But, uh, what about the bump? He confirmed what I suspected. It was indeed lymphatic fluid just hanging around temporarily. It would go away. And no, he reassured me, I would not end up with lymphedema in my right arm. He practically guaranteed me it wouldn't happen. I don't know if he really was that confident, but I believed him. Because I wanted to.

He told me that with my clean margins and no lymph node involvement, if the tumor had been smaller, I would be considered cured. But, with a tumor that size, treatment would consist of four rounds of chemo, followed by radiation. I had heard about a radiation treatment called mammosite for breast cancer whereby a balloon-like device was implanted inside the breast and through it, radiation was directed twice daily for five days. It made sense to me. Direct to the internal tissue, without burning through the skin. Five days and done. What's not to like? But, the surgeon informed me that at the tumor meeting that morning (tumor meeting? how many tumors attend?) they had discussed the fact that the latest findings indicated mammosite treatments weren't as effective as extended radiation through the skin.

Disappointing, sure. But I was pretty sure I wouldn't have been a candidate for it anyway. I think my tumor size was a little beyond the mammosite limits.

Chemo came as a surprise. I thought my clean report meant that radiation would be the treatment of choice, not both. And, for whatever reason, he told me in the same breath that I would lose my hair. For sure? Yep. I asked if he knew how much these highlights cost? He smiled. Yeah, he knew.

All right, then. Chemo and radiation. Let's be aggressive and keep the wolf away from the door. He asked if I had an oncologist referral. I told him I'd get one from the doctor who referred me to him and then get his opinion as well. Fair enough. He said he'd see me in six months.

When I left his office and walked across the parking lot, I felt a chill right down to my bones. It was cold out and windy. But this chill seemed to come from inside. I had been fine when I walked into his office, but now...

Two days later I was back in his waiting room.

Monday, January 18, 2010

Still there?

Two days after our little family returned home to Des Moines from their Thanksgiving visit, I still had a doorknob-sized "bump" just above the lymph node extraction area. It didn't hurt. It wasn't a protuberance through my clothing that would cause small children, who feel the need to point out all sorts of "abnormalities" to friends and strangers alike, to exclaim, "what is that thing?!"

Bump? What bump? But I knew it was there and I kept revisiting it, trying to determine if it was bigger, smaller, gone, still hanging around. It was definitely still there. But, bigger? Smaller? I couldn't tell. Without measuring it, how would I know if it had changed in size -- unless it did so in some exaggerated way. If I went to bed with a doorknob and woke up with a grapefruit, I'd definitely know. Not only that, I'd probably be some future medical textbook example of lymphatic fluid run amok.

I was just appreciative that the aforementioned lymphatic fluid decided to throw it's going-away party for the lymph nodes in the same real estate the lymph nodes had once occupied, rather than moving on to the arm and leaving me with an inflated limb that looked like it was stolen from someone three times my size. Something that noticeable would cause even small adults to exclaim, "what on earth is that thing?!"

My son Scott, when he was about 18 months old, sat on the doctor's table for a routine exam and eyeballed the doctor's stethoscope while the doctor and I had a conversation. Finally, out of patience, he reached up, held the stethoscope in his little boy hand and, with all sincerity, expressed his curiosity thusly: "What is the hell is this?"

I had a three-day wait until my follow-up visit with the surgeon on Wednesday. And my first order of business would be to display the bump-what-bump and ask, "what is the hell is this?"

Saturday, January 16, 2010

How done is that turkey in the window?

Thanksgiving was fast approaching and I was ready and anticipatory. I was feeling good. I'd had five days to recoup after my surgery and had done small projects around the house at a leisurely pace. Jeff was leaving Tuesday night to start driving a customer's car to Phoenix. He had agreed to this schedule before he knew the kids were coming in. He'd be spending Thanksgiving day with his brother and sister-in-law in Phoenix and flying home late Friday. I was sorry that he wasn't going to be with us for the holiday, but the up side was that I knew with Jeff on the road, the house would stay clean. The dining table would remain the dining table rather than his "office".

Once again I would be ensconced in a frenetic schedule, but this was not work. This was fun. And I was ready for some fun. I had planned every event with our granddaughters in mind. Making memories of good times with grandma and grandpa (albeit, mostly in absentia this time). Scott and his family arrived late Wednesday afternoon and after a quick dinner, we took his girls Chloe, 9, and Livy, 7, to see Jim Carrey's new A Christmas Carol movie. Kind of funny. Kind of dark. Kind of awesome cinematically. It was the kick-off of our activities.

Thursday morning, we all served a full Thanksgiving meal to the troops at my church and then came home to our own Thanksgiving dinner. I had put the turkey in the oven before we left that morning and set the automatic cook timer. First time I had ever used it. Enter when you want it to be ready, how long you want it to cook and at what temperature, and it calculates when it needs to start. How does it do that???? It doesn't have fingers to count on. I wasn't sure I had done it right. It was either going to cook for 3 hours and 15 minutes. Or else it was going to cook for 3 minutes and 15 seconds, in which case we'd be having a vegetarian Thanksgiving dinner -- not that there's anything wrong with that. But my friend Linn's husband John would be joining us, as Linn had flown to North Carolina to help their daughter with a health crisis in her household. I knew John was lonesome and worried about his family, so I was hopeful we'd be able to distract him with a good meal, followed by watching Wall-E.

Fortunately, we returned home to a roasted turkey and all was right in our world.

Friday morning I awoke to discover what felt like a small doorknob near the lymph node incision scar. I knew what it was. Lymphatic fluid, just hanging around trying to find the missing three lymph nodes. Eventually, it would give up and move to a new home. Or at least I hoped that's what it would do. It didn't hurt. Just felt odd. I didn't think I had done anything untoward that caused it. Just part of the process.

So Friday morning was: hop on the train to Chicago and go see Santa at Macy's on State Street, have lunch at the Walnut Room and then take the girls over to American Girl store, another highlight of their trip. Back home on the train; grab some leftovers and then attend our town's tree-lighting ceremony that night, with Santa arriving on a fire truck, followed by a drive through the Christmas light show. At midnight, I drove up to Milwaukee and picked up Jeff at the airport and brought him home.

Saturday morning, all six of us went to breakfast and then to the live performance of A Christmas Carol at the Lincolnshire Marriott Theater. From there, Scott and family drove back to Des Moines, IA, and Jeff and I drove home and collapsed.

It truly had been a Dickensian holiday, bookended by a film and a live performance of A Christmas Carol. It was fun. It was busy. It was exhausting.

As I drifted off to sleep that night, I couldn't help but think about how much our lives (and our longevity) are impacted by the era wherein we dwell here on earth. If I was fresh off the Mayflower, I'd be a ticking time bomb with no idea my body was cooking its own little evil-doing turkey. No detection. No treatment. No happily ever after. We get what we get when we get it.

In a few decades, the options we have now will no doubt seem archaic. Perhaps they'll implant a device that, while you sleep tight in your bed, zooms toward the tumor like a heat-seeking missile and blasts it into pieces like a shattered window. Then a second implanted little Hoover device will pick up the trail and suck up all the debris. Next morning, you'll get up, hop in your portable pack-and-go helicopter and zip off to work, good as new. And as I relate what it was like in my day, that future generation will look at me in horror and gasp, "you mean they sliced into you, removed that icky thing, then ran toxins through your system and nuked you 'til you were crisp! Good God, woman, and you thought you were lucky?"

And I'll smile and reply, "Yep, I was one lucky Pilgrim."

Friday, January 15, 2010

The day after

The sun arose and so did I. It was about 20 hours since my surgery and I was feeling good. No pain pills. No pain. No mental fog. A fleeting thought buzzed me like a mosquito: maybe I should just get dressed and go on in to work. I swatted it away. I'm dedicated, but not an idiot. I knew my body had just been in a war and I was low on ammunition. I understood. But it's not like I dig ditches for a living; move pianos; pour tar on rooftops. I sit at a desk and try to look like I know what I'm doing. It's harder than you might think.

Perhaps at this point I should explain I had only been with this company for four months. On June 26, I'd left the publisher I'd been with for 12 years and started in my new position on June 29. The department I head had been through a lot of transition in 2009 and now here was another disruption. Out of the five of us, three were new, and I was the third most tenured! What a terrible time for me to get sick. I couldn't help but wonder if the company thought they had bought a pig in a poke (and I simply must stop comparing myself to sturdy farm animals).

I'm the child of parents of the depression. "Work ethic" doesn't quite define it. More of a work command. Work harder, smarter, faster than the next guy (who, if you're really lucky, happens to be a slug) and if you can't make it to work, you'd better have been hit by a bus. I shouldn't use that analogy. It actually happened to a guy at our company (who is now doing fine, by the way). But you get the idea. There's a hearty spoonful of guilt that goes along with staying home from work.

Plus, I'll admit it. I'm a bit of a control freak. Not out of control. More like...borderline.

And I had options. Propped up in bed in my cozy PJs and fuzzy socks, via my laptop I could review proofs, follow up on assignments, annoy my staff. I began a rapid fire of e-mails: how's this coming along; don't forget about that other thing; did you fix the typo on page 27...and the old standby -- don't hesitate to call or email if you have any questions. And I told my hard-working staff I'd see them in the office the next day.

Then the VP of HR, God bless her, sent me a cease-and-desist e-mail and told me she didn't want to see me back in the office 'til Monday. "Just take care of you." Really? I could do that?

I did a fast count on my fingers (yes, I still use "digit"-al math) and determined I had five full days off. And the following week was a short work week because we had two days off for Thanksgiving. And the kids were coming here for Thanksgiving. This was good. This was very good. Five full days off the hamster wheel. Five full days of not having to put out fires. Five full days of not returning from the restroom and finding 14 blinking messages in my voice mail. Five full days of no deadlines.

Stop at the next station! I'm getting off this train!

And as I sat in bed and organized my sock drawer (well, I couldn't just be home and do nothing!), I began to realize I'd earned this. I'd earned the right to take care of me, sans guilt. And that the only problem I had to solve that day was figuring out the answer to that age-old question: where do all those errant socks go when they leave behind their poor lonely, forever-single mates?

Thursday, January 14, 2010

And then I created the heavens and the earth

So there I was, wide awake in the wee hours, and not a creature was stirring. I didn't feel like reading. Didn't want to watch TV. Or search through my purse collection for uncashed lottery tickets. Might as well be productive. Thus, I seal-coated the driveway, expanded the deck and tuck-pointed the chimney, which is really bizarre, because we don't have a chimney. My memory might be faulty on the other projects as well. If I seal-coated the driveway, I did a lousy job.

But I was restless, which is actually a natural state for me. Jeff constantly asks "can't you relax, even for a few minutes?" Ummm, no. This physical entity that is my body is a study in contrasts. I have the metabolism of a snail and the energy of a roadrunner. How is that even possible?

How could I have two fresh incisions and not a pinch of pain; enough anaesthetics coursing through my system to bring down a sumo wrestler, yet be wired hotter than a muscle car? I was searching for something meaningful to do at 3:30 am, when I noticed blood splotched on my pajama top. Well, there you go. Now I could play nurse.

The one gauzed incision site was fine, but the gauze over the lymph node-plucking incision was saturated. I carefully removed it and blood trailed down to my waist. That wasn't my biggest problem. I had fresh gauze. But no surgical tape. Unless this was magical levitating gauze, it was going to be about a two-second solution.

Jeff woke up, heard me in the bathroom and came in to assist. Ten minutes later, he had me mummified with a whole box of bandaids. I was pretty sure that gauze was going to be my most personal accessory for the next year.

That was enough adventure to earn a nap. I went back to bed and waited to get sleepy as my mind tried to decipher why did I get cancer. Not exactly a good topic to take on when you're hoping to drift off to sleep, but the mind goes where it wants to go and will not be sidetracked. Was this something I caused? Too much tuna in my diet? Did I stand too close to the microwave as I impatiently waited for the minute timer to ding? Sit too close to the TV as a kid -- was my mother wrong in warning "You'll ruin your eyes"? Should she have said, "You'll get breast cancer."

Aw, the hell with it. I went back to my old standby and mentally walked through my childhood home, room by room, and drifted off to a well-earned sleep after that hard day's work.

Wednesday, January 13, 2010

So, it's 2 a.m. What are YOU doing?

Funny thing about being a departing patient from a hospital -- even if you just had your thumb stitched, you leave in a wheelchair. One would think any simple procedure renders the legs useless and thus, out you go perched on wheels. But that was fine. I was up for the ride. After all, what if that missing pain finally kicked in and dropped me to my knees. And, truth be told, I had been having trouble -- actually, measurable pain -- in my left knee. I had tried, a couple of times, to convince the surgeon that as long as I was going to be put out with a hammer anyway, couldn't he take a whack at that knee at the same time. Sort of a BOGO plan. But, he politely refused. He was a breast man.

And so, I was wheeled out, assisted into the car and off we went. Jeff offered to stop at the pharmacy and have the pain prescriptions filled, but I had him hold off. I wasn't sure there was going to be significant enough pain to warrant taking a pill that would knock me out for the next 24 hours. However, I could go for some soup.

Jeff was hungry too. I waited in the car while he grabbed some carry-out from Panera. Home at last, we had soup, split a sandwich and talked about the day. I thought surely any minute I would be face down in the soup, out like a street light on the Dan Ryan. But no. I was alert. I was fine. Jeff looked more tired than me, but that was understandable. I've played that hospital waiting game too many times. There are diversions for the patient. For those who also serve and wait, it's mind-numbingly dull. He kept asking if I had any pain yet. Nope. How about now? No. Now? No, but if you ask me one more time, you might experience some.

The pain never came, but the exhaustion did. In like a lion. Maybe I'd just go lie down for awhile. That was probably around 6:30 p.m. Next thing I knew, it was 2 a.m. and I was as awake as if I had just downed a thermos of coffee. Common sense and good breeding has taught me that, no matter how sleepless you are, you don't call friends or family at 2 a.m. and say, "So, what are you doing?" However, the Internet allows us to send out pithy messages via email that the recipient can wait 'til noon to open and read, if they so desire. I thought of all the relatives and friends who made me promise to let them know how I was doing, soon as I was capable. What a great plan-- like getting thank you notes out of the way so that the daylight hours could be devoted to more recreational activities.

And so my fingers flew across the computer keys, letting all who had a need to know that the surgery was over; the patient not only survived, but thrived; the soup had been really good; I had no pain and if this continued, I'd probably be back to work day after tomorrow. By now, it was 3 a.m. and thank God I didn't have a roller and a can of paint, or I'd probably have painted the bedroom.

Tuesday, January 12, 2010

Wake up, Sandi, wake up.

I don't know how long the nurse had been asking me to wake up, but the very second her command registered with me, I knew exactly where I was. Hospital. Recovery room. I may have been on drugs, but my head stayed in the game. Did a fast survey and discovered there was no crater where my right breast had been. Good. The surgeon had stayed with the plan. Any minute now, we'd do a wheelie down the hall, they'd thrust that neat zippered bag in my hand and say "Get out. We need that bed." But first, maybe just a little nap.

I awoke a second time and stayed awake. Someone welcomed me back and asked if I had any pain. I mulled that for a second and realized, hey, actually no.

My friend Linn had come to the surgery waiting room earlier that day, ostensibly to keep Jeff company, but in reality her assignment was to listen to the surgeon's summation and make notes. Jeff, being a male and proud of it, would have one eye on the TV as the surgeon listed the salient points and the resultant feedback to me would have gone something like this: "Yeah, he said he removed something or put something in, not sure which, and that the sentry was a good soldier, and even though the hip bone is connected to the thigh bone, you're gonna die."

I was taken back to the room where Jeff and Linn were waiting for me and the actual surgeon's report, delivered by Linn, was that while the tumor was bigger than he thought it was going to be -- about the size of a small orange -- the surrounding tissue was clean, as were the sentinel lymph nodes. Yes!

I heard it and stored it. I can still remember her telling me that. But apparently I had selective memory, because I had no recollection of her telling me, in the very next breath, that she had run into someone we both knew in the surgery waiting room.

I was asked again, by another nurse, if I was in pain. No. Still not. And why not? Shouldn't I be? I had two incisions. Why didn't they hurt? Hello, drugs! Excellent. Someone suggested I take a pain pill anyway, just in case. I acquiesced. Why not. They're free (wrong). And the nurse, bless her, also asked if I'd like a snack. Why yes, yes I would. I'll have the filet mignon/bakedpotato/crispgreenbeans/pinotnoir/creme brulee snack package, thank you.

Evidently they were out of those. I got the graham cracker/diet coke kiddie combo. It was just right.

Can I go home now?

Monday, January 11, 2010

Doctor, doctor, give me the news...

Tuesday morning. We arrived around the crack of dawn. Or the crack of six. Somewhere in there. Surgery wasn't til about 10:00, but there was a procedure first that basically would turn me into a geiger counter specimen. I was given the requisite gown and a nifty zipping suit bag for my clothes (no doubt priced out at $595 on my hospital bill). A young woman came by and did a fast measurement of my lymphatic fluid to determine if I was at high risk for lymphedema (I was not, thankfully). Then, they took me to a procedure room where I was injected with a radioactive dye that would allow the doctor to use that aforementioned geiger counter to find the sentinel lymph nodes. The doctor for this procedure prepared me with a warning, "this is going to hurt like a mother." I think she actually used a more technical term, but the reality is, it hurt like a mother. A real stinger. But I sucked it up and didn't share any of the lingo I've picked up over the years -- lingo that my mother would have tagged "unladylike." Lingo that so easily rolls off my tongue when some stooge cuts me off in traffic. I was told that this was a blue dye and that it would have to leave the body eventually, so don't be alarmed when I peed blue. That was November. I haven't peed blue yet. So, I'm guessing I could still be the first to enter the pitch-black mine and light the way. The proverbial canary, aglow.

Back to my room. The anaesthesiologist came calling and explained what she would do. Jeff eyed her suspiciously. It pains me to admit that, while progressive in many ways, he still prefers his president and his airline pilot to be a male. I suspect he would also prefer whoever gasses him, hangs him off the edge of a cliff, and whisks him back to life again, be a male as well. But I was fine with her. Other than looking about 14 years old, she seemed to have a handle on the task. And if I was dead wrong, he wouldn't have the opportunity for a "told you so."

Then the surgeon came calling. I inquired about the tests I had had the day before. Once again, he confirmed that the left breast was clear and the right underarm looked good too. Oh yeah, a bundle branch block showed up in my EKG, but that's pretty common and we don't do anything about it anyway. Usually. We don't? I figured that was fodder for a future discussion. There was enough on today's plate.

To recap: one incision on the top of the breast to remove the tumor and a second incision to remove three sentinel lymph nodes, guided by the geiger counter. If those were clean and uninvolved, then any succeeding lymph nodes should be fine as well.

They started a drip. Gave me a nifty little blue hat. Let Jeff give me the kiss off and took me away to the operating room. I was calm. I was ready. Let's get this bad boy out of there.

Sunday, January 10, 2010

Flopsie is compromised

If you've never experienced an MRI, let me tell you: the machines are noisy. They look like a big doughnut, with a conveyor running through it. I know this for two reasons: 1) I've had one before and 2) I work for a b2b publishing company that pumps out a trade magazine on medical imaging products.

The noise is hard to describe. It's comical, in a fashion. Click. Click. Click. Bang. Bang. Bang. Hmmm. Hmmm. Hmmm. Whooooshhhhhh. Software. Software. Software. Software...

That's what it sounded like to me -- repeating the word software. Either the machine is odd. Or I am. An argument could be made either way.

I keep my eyes shut and count. I don't know why. I never get to a specific figure, because I usually begin anew somewhere during the count. It's just something to do.

Nothing invasive. Nothing painful. Just boring. But, the results were good. While Flopsie, as we all knew, had been compromised, Mopsie remained pure. Nothing in the left breast. And it appeared the right underarm area had also refused to get involved.

Short of hearing, "Oops, look at that! Talk about a gaffe -- there's no breast cancer at all. Our bad," this was as good a report that old Click Click Bang Bang Software Software could generate.

Saturday, January 9, 2010

Flopsie and Mopsie

My doctor recommended a surgeon who specialized in breast cancer and I got on his docket right away. The bad news is you have cancer. The good news is having cancer moves you to the front of the line. We had a meet and greet on a Thursday. I was hoping he could schedule me for surgery the next day. Then I could recover over the weekend and go back to work on Monday. Plus, Jeff had a car he was supposed to drive to New Jersey on Monday for a customer, then fly back on Tuesday. Yes, Friday would be perfect to schedule Dr. "Zorro" and get on with it.

Cancer or no cancer, turns out scheduling surgery is not exactly like scheduling a party. There were "things" to be done first. I would have surgery Tuesday morning. But before that, I would have a blood draw on Monday; an EKG and an MRI.

I had two choices: a lumpectomy and probably the chemo/radiation party package; or the mastectomy/reconstruction long engagement, with no chemo and a perky outcome. I didn't hesitate. I had been famously perky at one time. One good shove upwards and I could instantly remember where the girls used to reside before moving south. Perky would be great. Perky would be youthful. Perky would be invigorating. Perky would be a long process.

I went with the lumpectomy.

Friday, January 8, 2010

The hardest phone call

Much as we deny it, there's a little of our mother residing within all of us women. And my mother was the protective type who would, in her later years, try to make my relatives promise not to tell my brother or me when she fell and broke her hip, or fell and developed neuropathy, or had a small stroke. Didn't want to worry us. Of course, it should have occurred to her we'd be panicky if we couldn't reach her for the endless days she was not home, but in the hospital! Not exactly a good plan.

So, here I am with bad news and guess who I didn't want to tell. My son. The tradition almost continued. But Jeff convinced me to call Scott the same night we got the results. I wanted to wait. Make sure I was good and composed. But Jeff was right. I didn't want Scott to find out from anyone but me, and if I was calm and reassuring, then he would be at ease, knowing that I would be all right. And I was. And he was. And it went fine.

And while it was the hardest call that I had to make, I couldn't help but think that, while I miss her everyday since she's been gone, I'm glad I didn't have to call my mom.

The confirmation

It was just a 24-hour wait for the biopsy results. So, from discovery to confirmation was just shy of a week. Less than that, actually, because the doctor who gave me the ultrasound results told me flat out it was cancer. But, perhaps she was wrong. Perhaps it just appeared evil and was actually not one of those poisonous lizard-looking things. After all, there was a biopsy to get true confirmation, not an "I'm pretty sure confirmation". If there was to be anaesthesia and scalpels involved, I was rooting for true confirmation.

The appointment was for 4:00. There was a slight wait. True confirmation came at 5:00 as we met with the biopsy doctor and a nurse. After a few casual greetings in a private room, we sat at a round table and he said it was indeed an inductal carcinoma of the right breast. From the ultrasound, it did not look like there was any involvement under the arm in the lymph node area. Good news. And the size of the tumor made it a grade 2. Next step was to see a surgeon. Jeff asked a few questions. I asked a few questions. I haven't a clue now what we said. He held my hand. I was fine. The doctor wished us well and left.

And then the nurse took out a small pillow from the cabinet and handed it to me. It's about the size of a clutch purse and its cotton fabric has a design that incorporates the pink breast cancer ribbon. "There's a group of women who make and donate these to our patients. You place it between you and the seatbelt after your surgery," she said.

That's when I teared up.

Thursday, January 7, 2010

Stick it!

Needles don't really bother me. They used to. When I was a kid and was sick and we were in the car on the way to the doctor, my first question was always, "Am I going to get a shot?" The desired answer, of course, was "No, of course not." I never heard that from my mom. I'd get back, "Probably." If Dad was taking me, he'd put me off with the usual "Hmn. Don't know." But as we climbed the stairs to the doctor, he'd promise me that he'd buy me some candy if I didn't cry when I got the shot. Aha! There was going to be a shot. I started crying on the stairs, and went home with candy in my clutches (there was a drugstore downstairs, thank heavens). If I tried that on Mom, I got the old "knock-it-off look". Obviously, I preferred when Dad took me to the doctor. But those were devices of torture in those days. Impossibly long needles kept in a pedal-opening steam cabinet. The doc would hit the pedal, the lid would slowly rise and steam came hissing -- honestly, it hissed -- out of the cabinet When the mist cleared, there they were, all neatly lined in rows. Needles that looked like flame-throwers. Candy worthy? You betcha!

Now, they're so sharp and thin I never even feel them. Maybe they're not. Maybe I've got a tough hide, but in any event, they don't bother me. And for this biopsy, I already knew what the results were going to be, so this was a rather non-stressful part of the process as well. The nurses were nice. The doctor had a sense of humor. Wisecracks were flying. He biopsied about 5 sections. I asked how big the tumor looked to be and he said 4 cm. I was never a fan of the metric system, so I asked for a translation. About 2 to 2.5 inches. Oh. That's kind of chunky, isn't it. No wonder it made its presence known. While a smaller lump is more desirable, considering how long it had been since I had a mammogram, I was considering myself lucky that it was big enough to make itself known to me. They'd have the results for me the next day. I could bring my husband in with me. I decided that was a good idea. I'd been so emotionally detached about this whole thing so far, maybe I'd better have him with in case I imploded.

I don't like the way this feels

Supposedly, a cyst, when examined by a doctor, will roll away from their touch and feel like a grape. My lump, as it would turn out, was more like a tangelo. In size and feel. My doctor said, "I've got to say I've got a bad feeling about this. Let's get you in for a mammogram and ultrasound." Good as her word, she got me scheduled within 3 hours. So, my melons got flattened into pancakes and then I had a very revealing ultrasound. I could see it on screen. It kind of looked like a lizard. Or an arrowhead, at one angle. It was an odd feeling, looking at my own personal weapon of mass destruction. It definitely was not a sweet, innocent grape. This thing looked nasty. It looked malignant. And I wanted it gone. The tech said the doctor would be in shortly. I laid on the table for at least a half an hour and I knew right then. If it was nothing, they would have been back in right away and told me to go home. When the doctor finally came in, she took a look at it herself on screen and then sat down and said, "we're dealing with a cancer here." Okay. No chance it's a cyst then? Nope. All right. Next step? Biopsy.

I've got a feeling

I had discovered a lump in my thirties that put me into a panic. My son was only 10 years old and I was terrified his memories of me would be of a sick, wasting-away mom who left him too soon. Hit the bed, pulled the covers over my head and sobbed. It was a cyst. I was a big baby. He's now 37 and I'm far, far away from wasting away, as the scale would testify if I would step on it. But this time, I've been strangely, emotionally detached. I don't know why. I was pretty sure from the beginning that I was dealing with the real thing, so maybe it's the fact that I wasn't blindsided by the diagnosis. First, I should admit I was a poster child for bad behavior. I hadn't had a mammogram in years. Like 7 years. Or maybe 8. All right, I'm pretty sure it was 10 years. This just wasn't on my radar. There was no family history of cancer -- but of course, it has to start somewhere, and I guess I'm it. My mother had a stroke, heart issues and Parkinsons. My dad had heart disease. My brother died of aplastic anemia. Nice gene pool. What a stew! But -- no cancer. And, in those 10 years, I had gone to doctors. They kept leaving me. Two retired. One was asked to leave his practice (and I could have seconded that). Found one I liked a lot. Saw her once. She moved to Idaho. I don't think I was to blame for that. But, there you have it. I worked out. I was healthy as any sturdy farm animal. This wasn't going to happen to me, but it did. And, if it had to, this is as good a time as any. My best friend Linn told me to call her new doctor. She liked her a lot. I called on Monday and asked for the first available appointment with whomever was available. I was on the docket for the next morning. After 10 years of neglect, I had found a new doctor and made an appointment in less than 10 minutes. Good progress.

Is this a peanut?

Trick or Treat? I discovered the lump on Halloween weekend. We were going to a party that night. Jeff was dressed as the M&M. I was the M&M Peanut because, sadly, the M&M costume was too tight on me. We had a snack before we left and I brushed off the interminable crumbs that always land on the "shelf" and one didn't brush away. It felt like a half a peanut under my shirt. Further examination revealed it wasn't under my shirt, it was under my skin. I had a lump in my right breast. Had to be recent, because every day I have to brush off the detritus from 3 squares a day and I surely would have felt it before. We went to the party, had a great time and toward the end of the evening, I whispered to my best friend, the hostess, that I had just found a lump. We had just been at her mother's house the weekend before, playing games as her mother recovered from her own recent breast cancer treatment. It was a double whammy for my friend, but nobody had a fresher idea of what I was about to experience.