breast cancer

Six Hours of Questions and Answers

Written at 2 a.m. Saturday, February 6th

Early morning in our house Friday, February 5th:

“Do I have any clean socks?” No.

“Is there a basket somewhere with clean whites?” No.

“Are there any clean towels?” Yes, the basket in the laundry room is clean. My laundry experiment: “Can I just do laundry on Fridays?” For two days in a row, I had dried off after my shower with single hand towels. If I buy more socks, more underwear, and a couple towels, I can do laundry just on Fridays. Except if someone has an accident in bed on a Friday night.

“Are we really out of bread?” Yes, even the supply that I depend on in the freezer is gone.

In the morning at MGH:

“Do you have a port?” Yes, but I’m done with chemo, so I want blood drawn from my arm. My port is closed.

“Can I really say I’m cancer-free now?” Yes, you were when you started chemo. Everything we are doing is to prevent it from coming back.

“Can I go anywhere and do anything?” Yes, your white blood cell count isn’t 100%, but it’s on its way up. If you get a fever at this point, your body can fight it. (Perfect timing: Will threw up two times – make that three – in the night. Polly Purell wouldn’t have dealt well with this.)

“When can I get this port removed?” As soon as you like.

“Will I have a full body scan every year?” No, there is no evidence to support the benefit of finding tiny breast cancer cells, say in your lung, or finding something after investigating symptoms six months later; research shows that the treatment and outcome would be the same. So there is no reason to subject your body to yearly radiation, nor your psyche to false negative findings. Remember this is a very theoretical discussion because everything you are doing significantly reduces the chances of recurrence. By the way, give your body time to get back to normal. You may look normal but it will take your body a while to recover. I tell my patients for every month of treatment – from surgery to the end of radiation – it takes a month for the body to recover. (Full recovery estimate: January 2011)

“Really? I feel great.” It may not take quite as long, but give yourself time. By the way, don’t be surprised if in a few days or a couple weeks you feel very emotional for no apparent reason. It could happen during the strangest times: you could start to cry watching a Superbowl commercial. Many people put blinders on and move through this physically. But you can’t trick the mind; it will catch up with you when it realizes what you have been through and what a significant step this is to have completed.

Still at MGH, waiting for an injection:

“Do you need anything else?” No, I don’t need this recliner over-looking the Charles. I’m done with chemo. I’m only here for an injection.

Late morning, talking on the phone with Marge, my friend of 30 years who has been reading my LHH posts and the comments:

“Do you know how lucky you are to have so many friends? But of course you know. Aren’t friends the best?” Yes……………………………… don’t make me cry right now ………………………………………. I’m out of bread; I’m parked outside the grocery store; I have to run in for a loaf so I can take Will a PBJ in a half hour for lunch.

Staying strong,


Where have I been? What happened to daily posts?

More often than not, I’m sleeping all night which has seriously affected my output of words! I miss that peaceful lull between 2 and 4 a.m., yet I’m happy to be heading toward normal.

I’m in the last Nadir period (low white blood cell count). With the exception of an annoying cough and sinus headache, I feel great. (Mom and Mary, I’m watching the cough and will go to the doctor if it doesn’t go away soon. My doctor said not to worry if I didn’t have a fever. No fever.)

Will thinks my hair is starting to grow. (I don’t think it is… he knows it will soon and is jumping the gun a little bit. :) I told him it may be a different color when it grows back. He wants it to be the same color as before, and I told him I could make it that way. He was puzzled. I explained chemo better than I explained the vanity behind coloring my hair.

Monday Bill left for a three-day trip to Vermont, after a very long Sunday night. I was coughing; Will had a sore throat and couldn’t get to sleep; Liam woke up at 1:30 a.m. screaming to go to the doctor. He’s been constipated on and off for a few weeks. Imagining the worst, I bundled him up and took him to the ER. The trip must have jarred him enough to make the pain go away. We pulled up by the hospital, and when I opened the door, he said, “Is this the hospital?” “Yes,” I replied. “Well… I’m not going in there!” We went in, and a very nice nurse met us. Liam looked 100% normal, and I looked like I was on chemo. She had to wonder which one of us was there for care. Liam immediately said, “No shots and NO tweezers!” He looked and sounded just fine, despite being doubled over in the kitchen 30 minutes earlier saying, “I need to go to the doctor. I need my Liam back!” After a conversation with the nurse, we drove home without seeing the doctor. There were definitely no symptoms of a bad bowel condition.

So... there is no shortage of material, just a shortage of early morning hours to cohesively gather words on paper.

Staying strong,


Awaiting the Launch

My last chemo appointment was a milestone, but I’m still wading through the whole business of being on chemo. February 5th is the date of my “post-chemo” appointment with my oncologist.

I feel like I have big springs under my feet, and while I want to explode and do and go as I please, I’m tethered down. The springs coiled tightly underfoot. I can’t wait for the launch, yet I look to it with trepidation.

My mind has gone through pre-flight plans for the last week. What I can do, what I can catch up on. The freedom. Busting to get on with it. But my “it” is so splintered. At this rate, when my tether frees, I will be a firework: a short flight before bursting into a million beautiful bits. Exciting. Energized. Short-lived. Fireworks last for seconds before turning to ash and drifting quietly to the ground. I certainly haven’t been Polly Purell for four months to now become ash.

I’ve spent the last week dreaming like a firecracker. Jumping back into the thick of life, catching up on every single tiny detail. I caught myself one day conjuring up a great plan. It seemed a grand plan. An ambitious plan. I called Bill, “Does this make sense?” He reeled me back in, urged me to cut the plan in half, start slowly – I still have radiation to go through. Another friend suggested the same as I enthusiastically said I was ready “to go.” She shook her head and waved her hands in front of me as if she was slowing a semi-truck. “Slowly.”

I don’t want to fizzle when the tether is released. The force under the release will be hard to regulate. But I need to stay in control of the direction. I want to soar intact like a space shuttle, powering through the atmosphere with goals and ambitions. Then after busting through the atmosphere and stabilizing in space, begin the business of the details and activities to accomplish those goals.

Fireworks are beautiful. A rocket launch is spectacular.

Staying strong,


Friend or Foe

I’m waiting to talk to my doctor before the last infusion today. Last time, I spoke with him briefly about a flurry of bizarre brain activity: anxiety over chemo ending. The thought sat with me for two days. Chemo is ending. Not, chemo is ending, yippee!! But, chemo is ending, period.

Chemo is my big gun. I come to MGH every two weeks. I have labs drawn and a physical with every appointment. My infusion nurses calm fears, answer questions, and when necessary, watch me like a hawk. My doctor never rushes through our appointments. I’m surrounded by brilliant, understanding minds every two weeks for a whole day. Warriors. And today, my last such visit.

Having chemo is an active battle. It’s physical. On Day 1 it’s an all-day process, with a needle accessing my port for eight or more hours. It doesn’t hurt at all, but it’s there. On Day 4, I can feel the aches; not pleasant, but I know a war is being waged on the inside. I see my bald head and the white spots on my fingernails, external reminders. In three to six weeks, my hair will start to grow. On January 25th, the aches will start to fade. February 1st, I will feel like myself. February 5th, my white blood cell count should be pretty close to normal. February 5th is two weeks from today. My life for four months has been on a two-week rotation. This is the last one. This is the last chance for chemicals to do battle, to find any stray cells. Today, I can’t clearly define chemo as friend or foe.

I’m going to rent “The Graduate.” From the last visit, my doctor’s comments, paraphrased, “The best way I can help patients understand this phenomenon is by comparing the end of this phase to the last scene of ‘The Graduate: What now?’ “ As for me, I think this is part of “survivorship” – working out how to live as a Survivor, with a capital S, this particular active fight behind me. A new meaning of survivor for me, and a better understanding of the term survivor for those who have already traveled this path.

11 a.m.

I will have a post-chemo meeting with my doctor two weeks from today. Whew! I’ll be back in two weeks for a very short visit. We’ll talk more about living after chemo and after treatment in general. We’ll set appointments to follow-up with the trial in which I’m a part.

2 p.m.

One hour left of chemo! This afternoon, I’m glad to say, “This is it!”

Hopefully, I can upload a couple pictures of me here in the infusion pod that Bill just took. In one, I’m hooked up to and standing beside my IV tree, having just had a look at the salt & pepper bridge crossing the Charles River. I’m counting down.

Staying strong,


Tidbits from December

From a journal entry in late December:

I washed my wig today. That was weird. Only two cups of cool water in a bowl with my wig cleaner. Jeepers... pulling it out of the bowl I had to convince myself that it was a useful prosthesis and not just a big old hairball! After a quick rinse and a gentle towel blotting, I gave it a little shake. The style bounced back immediately. It dries on the wig stand for 24 hours and will then be ready to go.

My best Christmas chemo fog moment: We had friends over on Christmas Eve, and they brought a rib roast. Cara had it in the oven at her house, and we were just going to finish it off here. So I turned the oven on and then when the oven came up to temperature, Cara asked me to put the roast in the oven. “Sure.” I replied. I finished what I was doing then set the timer for 30 minutes, knowing I would forget to watch the clock while the roast was in the oven. Twenty minutes later Cara said, “Is this the roast that’s supposed to be in the oven?” pointing at the roast sitting on the stovetop. “Yes, but I did remember to set the timer!!” (My sister-in-law did this yesterday with a frozen pizza… and she’s not on chemo! Perhaps it’s busy-mom fog.)

Having donned my wig one morning, I knelt down to wash Cocoa Krispies from Will’s lips. “Mom, does it hurt when you take your wig off?” “No, watch…” and I took it off. Then he wanted to try, so I put it back on and he took it off. Then it landed on his head for a quick laugh. As I replaced it on my head, I reminded him, “Never take it off in public, outside of our house.” With that grin, he summed up the lesson. “So Mom, never pull off a bald woman’s hair!” On his way to becoming a true gentlemen.

We had a big gift in our house for Christmas: the Wii. The day after Christmas we set up each of our Wii characters with physical attributes. Bill, Will and Liam were first. Then it was my turn. My heart skipped a beat: What will my character look like? What will the boys want her to look like? We selected female and numerous hair options appeared – including bald! Kudos to Wii designers. We all had a laugh over my little character, especially when I was boxing. Completely bald, she has big eyes and red lips. She looks like her wig fell off getting into the boxing ring.

Staying strong,



On my use of the big one: when I’m in fear for my life, feeling powerless. I vividly recall using it three times looking back at our history together. Bill pulled me into many adventures that I doubt I ever would have done on my own – and would relive again with him in a heartbeat.

After a few runs down the tame ski hills in Wisconsin, we went to Utah for a week. The green runs at Snowbird were nothing more than the narrow roads winding around the edge of the mountain. Bill caught up with me and convinced me to take another run away from the road and down the side of the mountain. He stayed at the top while I gingerly traversed the mountain. Ski across, fall down, turn, ski, fall, turn, ski, fall, turn. After six or eight reps of this I stopped after ski, fall and was only a quarter of the way down the mountain. I just sat there with tears burning my cheeks. Bill, my alpine skiing hero, came swooshing up next to me. Seeing my tears, he said, “Oh, let me give you a hug!” My reply, “A hug won’t get me off this f@#$ mountain!” I have no idea what got me down the mountain; perhaps unleashing steam got the adrenaline going. I got off the mountain, sporting an eight inch bruise on the back of my left thigh where I fell on every left-handed turn.

On another adventure we were sailing with friends in St. Martin, bare boating, which means taking the boat out on our own with no paid crew. We had picked a week with a lot of wind. It was torturous, blowing all the time everywhere on the boat. Even as the sunset, when winds usually fade, it blew. If we tried to escape it down below, we would sweat because it was so hot. It made for some great sailing but happy hour was more like windy hour. We had sailed quite a way from the boat’s home base and had gotten caught in rainy weather. The Captain and First Mate, the men on our boat, decided to set sail anyway despite the rain. Soon it was more than rain. We were in 20-25 foot swells and beating rain. I sat looking out over the bow, watching land disappear as we slumbered over the crest of a wave and into the trough. I couldn’t do that, so I looked over the stern, only to see land behind us disappear. I looked all around us. No other boats were sailing these high seas. I turned to the Captain and the First Mate and asked, yelling over the gale, “Why are we the only f@#$ boat out here?” They were redeemed as a big dive boat motored by at full-power – with a lot more power than our little engine. Lying out flat on a dock never felt so good as at the end of that sail.

We rented a pretty large sail boat on that trip so we had two sleeping berths and a third just for scuba gear. Despite the constant five to eight foot swells, we still had some great dives in St. Martin. We would drop anchor near a dive site then giant stride off the back of the boat and settle down between 30 and 80 feet deep where there was no chop but sometimes a pretty strong surge. During one dive we checked air levels and decided we needed to head back to the boat. At 30 feet deep we swam and swam, longer than what we did on the way out. I was getting big-eyed – swimming at 30 feet was a lot easier than surface swimming in choppy water, and I didn’t have an abundance of air. I developed my own underwater sign: cupping my hands together and moving them emphatically as if to say, “Where’s the f@#$ boat?” Bill understood. At that point our captain went to the surface and found it. Behind us. It had swung around in the rough seas and we had swum right past it.

So, June 16th I found myself on yet another boat bracing high seas. Atop a very steep mountain skiing on a narrow road. Diving with little air not knowing where my boat was anchored. From then until early August I woke up every day with the same thoughts, “Mmm… the sun’s up. What day is it? F@#$, I have cancer.” I’ve never sworn so much in my whole life. Once the cancer was thoroughly defined and didn’t appear anywhere else on the PET scan the word dropped from my wake-up routine. Slightly smoother sailing, a mountain with gentler slopes, back safely on a stable sail boat. No longer in fear for my life and gaining knowledge, hence power. I was going to live.

I saw my oncologist yesterday before chemo. I’m not sure what the discussion was but he referred to the time when I “had” cancer. And I think back to the radiation doctor in September who said to count the cancer cells in my body would be like "counting the angels dancing on a pinhead." All I’m doing now and in the near future are preventative measures. I’m officially putting cancer in the past tense.

Staying strong,



We had a 60-degree day mid-December. The unexpected warmth was a reminder of how beautiful the spring sun will feel this year. Or was it a reminder of how far away spring is? Whichever, outside playing with the boys, I felt silly on this warm sunny day brushing away tears under my sunglasses.

I relate to Frog and Toad’s adventures much the way some people follow Peanuts, Dilbert, or Winnie the Pooh. There’s a speech by Frog to his best friend Toad from the story “Spring” that gives me hope but draws tears, no matter how many times I read it…

“What you see is the clear warm light of April. And it means we can begin a whole new year together, Toad. Think of it. We will skip through the meadows and run through the woods and swim in the river. In the evenings we will sit right here on this front porch and count the stars.”

As fortunate as I feel, there are occasional days when I just want to recover stolen moments. Playing at the beach. Visiting family. Taking the boys to birthday parties and staying to chat with other parents. Accepting kisses on the lips. Scooping my sons up effortlessly from the ground into a hug. When visiting recently, my sister scooped up Will and Liam into big, beautiful hugs while picking them up from school. I felt the same wincing pain as I did on that warm late fall day.

I try to flip it, to spin it, knowing full well the number of blessings that have come on this journey and knowing there are future opportunities for all of these moments. But I would be remiss not to acknowledge and to grieve those nuances lost.

Years ago, in a smaller life quandary, I found that the best way to start solving a problem is to take immediate action, no matter how small that action is. Just by asking myself, “What’s the one thing I can do tomorrow to start fixing this?” – that puts the ball in action. One small step opens the mind to possibilities.

So, after this 60-degree day and needing to look past winter, I called the local radiation doctor to get a glimpse of the next phase. I have two chemo treatments left: today and on January 22nd. Then I get a month break. February is treatment free. March 1st I start daily radiation (five days a week) for six weeks. I decided to get my appointments booked right away while the schedule was wide open. I’ll drop the boys off at school at 8:30 a.m. then go for my 9 a.m. appointment. It takes about 10 minutes per appointment, so the rest of the day will be mine. I finish radiation April 9th. April 19th is the beginning of spring break week. I’ve made these plans knowing they may change. I will get a second opinion on radiation treatment as I did with chemo to make sure the local doctor and a MGH doctor agree on protocol for radiation.

Shortly after I set the radiation appointments, I dreamed that I had hair again. I could feel it on my ears in the dream.

Staying strong,


P.S. Aunt Kim, my Gurney’s catalog came on Friday. I decided rather than dream about spring planting I would take action. I’m starting with a small sun garden space outside our fence by the drive. I've been watching this tiny chunk of ground and even in the winter it gets a good dose of sun. I placed my order on Saturday, taking advantage of the “buy-$50-get $25 off.” I’m going to check around and find the phone number of someone who owns a horse. :)

Hodge Podge

Bill and Liam made it home last Tuesday from snowy England. They brought back English colds, but Will and I managed to avoid them. Leave the Purell Institute and that’s what happens. :) Will and I played a week-long game of Monopoly. It ended after seven days: I was bankrupt and Will owned nine hotels and three houses. I’ve never played a whole game of Monopoly; it’s not too fun when you realize you’re past the point of no return. I encouraged Will to load up on the hotels so we could finish the game in less than two weeks.

Our friends Tasha and Peter and their two boys flew in late Thursday night from Chicago for the long weekend. We had four stair-stepped boys – ages 4, 6, 8, and 10 – under one roof. Ours had a great time following the older guys. They looked like mountain goats playing in the snow on our hill. They thoroughly tromped around, bringing the bare dirt through the snow. Six inches of new snow yesterday has created a brand new boot canvas. Bill and Peter took the four boys to Boston on Saturday. They had a tour of Fenway Park and also visited the Aquarium. Meanwhile Tasha and I sorted four suitcases of clothes that she had brought out for Will and Liam. She got them into tubs and hauled them to the loft for me. It was nice to catch up and we got a few other projects accomplished as well.

On Sunday Bill flew to Costa Rica for business. Yesterday he visited a coffee farm: picked coffee beans or “cherries” and met two or three coffee farmers. He’s fascinated. They’re going “under the canopy” into the rain forest tomorrow. He returns Thursday evening, in time to go with me to my last chemo session this Friday.

It’s been just over a week since my last chemo session. Day 4 found me in a bit of an ornery state, not too willing to take pain meds and spend an afternoon in bed. I put on my big girl pants, my wig, and my lipstick. I packed 12 pairs of white cotton gloves in the van and ran some errands after dropping the boys off in the morning. Before going into the cleaners or making a return at Target, I put on a pair of these gloves. Then when I get back to the van, I take them off, dump them on the floor, and Purell. Even with those on, I try not to touch carts. After running two or three errands, I came home and kept moving in the house. Although I was achy when I finally went to bed, I was so tired I went to sleep pretty quickly. In the end, I took no pain pills this time around, not even ibuprofen. Moving and doing seems to help.

Staying strong,


The Warrior Princess

At 6:00 a.m. on September 24th, I took the train to Boston for a procedure at MGH: to have my port implanted. Bill was going to meet me after lunch for a chemo teach. As I was ushered into the exam room at 7:00 a.m., the nurse asked who was with me. “My husband is meeting me this afternoon. When I’m done here, I’m going to find a nice quiet spot for lunch.” I didn’t expect her reply, “Well, we’ll find a quiet spot for you here until your husband arrives. You can’t leave the office on your own.” Getting the feeling that this was more than a minor procedure, I sat in an interior waiting room, under a “No cell phones allowed” sign and called Bill. “Can you come sooner? They aren’t going to let me out of here until you get here!”

To start the procedure, the tech got her tape out. As she started working she explained why she was doing what she was doing: she was taping my right breast to my right knee. Had Will and Liam called ahead suggesting a tape trick be pulled on me? “We’re simulating you standing up. We don’t want to place the port with your breast up here. Believe it or not, this works well.” Whatever you say, I thought. Then she went to work covering my chest and neck with the equivalent of iodine. I couldn’t see it, but she told me that it was orange. I could feel it run from the base of my throat right up to my ear. She told me I could get it off with rubbing alcohol.

The radiologist came in and went to work. While I was supposed to be in a happy place with the mild sedative, I could feel the strength of the radiologist putting the port in place. I would’ve preferred to have been in a much happier place, remembering none of the procedure.

After recovering from the port placement, having a bite to eat, and finagling a cup of coffee from the nurse, I met Bill outside about an hour before our next appointment. I checked my cell phone. Change of plans. Chemo teach canceled. After my second surgery, I had an MRI to confirm the whole tumor had been removed. I had expected an “all-clear” call. Instead it was a “We see something else and aren’t sure what it is. Come to the Medford hospital to have an ultrasound done.” I wasn’t happy. I had a plan. I didn’t want it changed.

I walked into the Medford hospital and bumped into a couple from church, said “hello,” then continued on to the bathroom. There I saw the orange stain on my neck. I had worn a coral-orange shirt that day. My shirt and neck matched. I was pissed. I had had to sit for an hour and a half after the procedure and no one had offered to clean my neck off. My anger festered as did my attitude. Standing in that bathroom and summing up the day’s, weeks’ and months’ events, I remember thinking loudly, “This is bullshit!” The Warrior Princess was born. I think perhaps even my hair reddened with anger. (Sidebar: I warned you about the cussing that runs down through my family. I know the vocabulary and use it only on a few, select occasions. I have to be extremely angry or in fear for my life. I’ve sat on this for days, thinking about editing it out, but this is how it happened. Sorry if I offend.)

I went to the waiting hallway. A tech who I recognized from previous visits came up to me with a blue Johnny (hospital gown). I had been sitting in a blue Johnny from 7:30 a.m. until noon at MGH. I exploded, “Do you mean to tell me I can’t talk to my doctor in my OWN clothes?” Poor thing. “Of course you can,” in a way-too-kind voice for how I had just spoken to her.

Fully dressed and with Bill by my side, I met with my breast surgeon. With sullen, edgy looks she and I exchanged how disappointed we were with the situation. She left to consult with the radiologist before they did the ultrasound. I changed into the Johnny and laid down, staring at the ceiling, again wondering if this was really happening to me. Bill sat quietly in the corner. The tech came back. “What do you have on your neck?” I explained where I had just come from and told her I had to use alcohol to get it off. “Do you want me to wash it off?” Still seeking some control, I tartly replied, “Only if you don’t charge me for it.” “It’s a freebie.” She wiped my neck so tenderly that tears welled up in my eyes.

Then she asked if she could get me anything. “A beer would taste really good right now.” She chuckled, then we bantered a bit.

Tech: “What do you do?”

Me, as the tears started rolling down the side of my face: “I’m a full-time Mom. I have two sons, and I can’t talk about them lying in a hospital bed.”

Tech: “I’m so sorry! Where did you grow up?”

How did she know these were my two touchstones? Me, more tears flowing through the gates: “Iowa, and I can’t talk about that either.”

Tech: “I’m trying to make you feel better and NOT doing a very good job!”

We were both laughing as my eyes soaked the sheet behind my ears.

Me: “I can talk about cancer in the hospital without crying!”

And, being a tech, she said, “I can’t talk to you about that!”

Me: “Weather has been nice, huh?”

The surgeon and radiologist came back in and went to work, conversing in scientific jargon. My surgeon apologized for the foreign language. I told her I was on Wingaersheek Beach and to just to let me know when she was done and what they decided. At one point, I was wiggling trying to wipe a tickly tear in my hairline. The tech saw it and wiped it away for me.

They left the room to consult and to let me get dressed. I’m guessing the tech had tipped them off about my love for the Johnny. My surgeon came back in and told me the ultrasound was inconclusive. She said, “I say we just take it out tomorrow.” What I wanted to hear. No messing with biopsies, just get it out. Be sure. She was as fed up as I was. Patients waited for weeks to get into her OR, she was going to make this happen tomorrow.

Before my 1 p.m. surgery the following day, the radiologist drained fluid that had built up after the previous surgeries. Then he placed a wire to mark the new questionable spot. Neither were pleasant procedures. I told the radiologist it was nice to see him again, but I didn’t want to see him again in the near future. We both smiled as we shook hands.

Surgery went well. After having already had two surgeries there, I knew the staff; it felt like old home week. I left the hospital with bandages sticking out above my collar on the left side, matching those on the right covering my port. I really did look like a Warrior Princess, minus the orange war paint on my neck. I spent the next several days icing my wounds. That battle officially ended a few days later with a call from my surgeon to say the spot was benign, probably scarring from the first two surgeries.

I was back on the chemo highway.

There have been pivotal moments on this journey with such rawness that I block them from my own immediate recollection. There’s no way I could immediately share this experience. First body and spirit needed to go through a healing process. I jot notes during these times but don’t want to relive it through sharing it soon after the event. Now, months later, finally I can look back, reflect, and even laugh. But those tears that day felt like salt pouring in an open wound before the first incision was even made. It took weeks for the emotional pain to dissipate. Even as I wrote this and re-read it and re-read it, my Warrior Princess teeth clenched in defense. I’m going to post it now and release my jaw.

Staying strong,


Clashing PJs? What PJs?

Now that cold weather has settled in, my going to bed routine means leaving my PJ bottoms on because the sheets are so cool. I go to bed bundled up, complete with my Noddy hat and my pink fuzzy socks. Then between 2 and 3 a.m. the heat kicks on: my internal thermostat erupts and a full-out night sweat ensues. In a sleepy fog, I take my hat off first, then my socks, to let the heat out on either end. Sometimes that does the trick. After one of these first events, I woke up in the morning with nothing on and the sheets thrown off. It caught me off guard. My memory went back to going to bed all covered up and tucked in. The middle of the night stripping had slipped my mind. I was shocked to wake up and see my PJ’s not on but in a pile by the bed. Bill, hearing me rustle around, turned over, saw me, and from beneath our heavy comforter said, “What ARE you doing?” I really didn’t know. “I guess I got hot.”

Another side effect of chemo: early menopause. This night sweat stuff isn’t new to me. When going through infertility treatments years ago, some of the meds gave me hot flashes and night sweats. That was temporary. This, well who knows how long I’ll be stripping in the early a.m. It’s accentuated even more due to the medicine I’m on in the trial. It’s called Triptorelin, and it wipes out hormones produced by my ovaries. The type of breast cancer I had is estrogen and progesterone receptive. Basically that means these hormones feed this kind of cancer. So by knocking the hormones out of my body, that’s one way of diminishing the chances of the cancer returning.

The silver lining in this is the fact that endometriosis is also fed by estrogen. So now after 30 some years of come and go pain from endometriosis, that too will stop. The physical pain I’ve experienced with cancer through surgeries and chemo side effects has not touched the pain level of endometriosis. Endometriosis is a result of tissue from the uterus escaping and settling elsewhere in the body and releasing fluids every month which have nowhere to go.

At the height of an endometriosis outbreak, over 10 years ago, I had flown to Seattle to join Bill for a weekend after a business trip. We were on separate return flights home. On Sunday morning I was going to poke around downtown then catch my afternoon flight. Bill had a morning flight. Plans changed when I woke up. The pain was so bad I couldn’t walk. I reached for my Advil bottle and took four pills. I scooted Bill off to catch his flight, promising I would be fine after the Advil kicked in. I can’t imagine how unconvincing I was curled up in a ball on the couch. Every moment of “pain” I have, I hold up to that day, and thus far, nothing has come close to it. Even this all-body achiness and the fleeting pains chasing me around for four days aren’t doubling me over like the pain from endometriosis.

Little research has been done on endometriosis. I picked up the Boston Globe a few days ago and saw a woman who I believe will someday be a hero for women suffering with this. She has started a research lab at MIT in Boston, focusing on endometriosis. After suffering with it herself for years, after 15 surgeries and capping out at 24 Advil a day, she’s decided to delve into the problem. I can’t wait to see what she does: I’ve had four surgeries and capped out my Advil intake at 18 per day. This woman, Linda Griffith, is a professor of biological engineering and mechanical engineering. I hope she quickly makes up for the 20-year draught of research on causes and treatment of endometriosis. It’s painfully debilitating and often misdiagnosed. Many women silently struggle with it.

I’m not sure how I got here from my PJ discussion. But here I am.



Hodge Podge

Where to begin…

I’m feeling fine. At the last appointment on the 28th, the nurse practitioner reiterated that while on Taxol, my white blood cell count won’t go as low as it did on the first meds. When I told her I had been pretty cautious throughout the first four infusions, she said I didn’t need to worry so much. How much is so much?

We discovered in early December that we had a timeshare about to expire, so we made last minute plans to use it on Cape Cod, in Falmouth, over New Year’s weekend with our friends who used to live next door to us in Wakefield. I took my Clorox wipes. Debbie brought the Lysol. We met up on Friday afternoon and had dinner-in while the kids played. Their daughter is a year younger than Will and plans to marry him; his first kiss – and thus far his only – was with her around the age of two or three. Their son and Liam, close in age, have telepathic connections. Many days, a conversation with Debbie and hearing about her son’s and my son’s common actions and behaviors gives me grains of sanity. Although I don’t think Debbie’s son every made warm chocolate in the toilet for her… This was the first time we’ve been together, just the eight of us, since they moved nearly four years ago. We had a great laugh that evening. The next morning, well, between a bad rash and a throwing-up incident in their room, our neighbors packed and went home. That’s no small feat given we had packed planning to spend three winter days together. All are recovering, and although we missed our three-day weekend together, we had the gift of Friday night.

One thing about the Cape in the winter: there are no crowds of people… anywhere. The beaches were deserted, the restaurants were quiet, and the swimming pool was empty. I dropped the three boys off at the pool then went shopping in Falmouth. The shops were also deserted. We even had the aquarium in Wood’s Hole to ourselves for most of the visit. It was a low-key time away from a house packed with holiday over-indulgence. At the hotel, the sparse kitchen cupboards with only the bare minimums were a pleasure to open – nothing fell on our feet.

As I type this (6 p.m. Tue. the 5th), Bill and Liam have just landed in England. Bill’s sister is going away with her family for a long weekend, so Bill and Liam are going to keep Grandma company. Will is back at school, mildly confused as he didn’t think he would be going back until “next year” and when he went back that he would be in 1st grade… He’s still in kindergarten.

With Bill away, I’ve changed my next chemo date from Friday, January 8th to Monday, January 11th. Only one more after that! Bill will be home Tuesday to manage evenings next week. In the meantime, Will and I will be enjoying a week-long game of Monopoly at the dining room table while Bill and Liam entertain abroad.

Hope your New Year is starting out well!



New Year’s Resolutions

For once, I can make a few resolutions knowing full well they will happen in 2010. As I take a quick inventory, I see what is and what will be.

This is Day 5. Yesterday was the worst for aches. They hit muscles, joints, and surface flesh. Bill took the boys to a movie yesterday afternoon, and I took two pills and went to bed for the afternoon. The aches and pains are bizarre. When the ache hits a muscle, it feels like I’ve overdone it working out. A little heat or ice and it would feel better, but they are traveling aches. Sometimes a fleeting pain. Sometimes lasting for a few seconds or perhaps several minutes in one spot then moving on. I asked a nurse what exactly is happening to my muscles. Unsure, just a side effect. I asked about my big muscle: my heart. No impact on that. Resolution: On February 1st, after two more chemo treatments and six days of traveling aches, muscle aches will be my own – not chemically induced.

My fingernails are changing color. As they grow out, the beds are a bluish color with white flecks on them and they feel a little tingly. Grandma Baldwin used to say if you told a lie a white fleck would appear on your fingernail. I couldn’t tell this many lies and keep them all straight. Resolution: No white flecks by summer 2010.

Chemo works by killing fast-growing cells. That’s why I wake up in the middle of the night and in the morning with my nose feeling as dry as a brittle November leaf being blown hither by a cold late fall breeze. Lately, every morning I’ve been getting small nose bleeds because of the dryness. Resolution: I’m going to enjoy the humidity of the summer. This is a tough one… I’m not sure if I will be able to keep it.

My funky chicken arm is still numb most of the time. Surgery to remove the lymph nodes under my arm stirred up the nerve endings. They may sort themselves out over time; I may always have some residual nerve damage. Some days it feels like tight guitar strings are connecting my underarm with my biceps. Some days it feels like a golf ball is under my arm. Every day I have very little feeling on the surface of my triceps. After surgeries, I was afraid to shave under that arm because I couldn’t feel anything. Then when I started chemo, I was supposed to be careful not to nick myself. I finally got brave and used a trimmer. Resolution: No more underarm hair in 2010. If I’m still numb, I’ll call on Nair once the chemicals are out of my body.

And finally, my baldness. It will take a while for my hair to grow back. I’m hoping in time for beach weather this summer. It may grow in finer, or curlier, or straighter, or grayer. But it will grow back. Resolution: No more complaints about the thickness of my hair. No bad hair days. A day with hair will be a good day!

Staying strong,


Iowa Trivia

Some factual, some based on opinion…

Farmers “grow” corn and “raise” cattle. The two are not interchangeable.

Most discussed topic in Iowa: the weather.

The joke we’ve all heard: What does IOWA stand for? Idiots Out Wandering Around – but we know which state is famous for growing potatoes and which state is the Buckeye state. (P.S. from my cousin Jane: Iowa is always first or second in national education test scores.)

The state bird: Eastern gold finch.

State motto: Our liberties we prize and our rights we will retain.

The first person to feel a slump in the economy: the farmer.

The last person to feel a jump in the economy: the farmer.

Where most visitors congregate: the kitchen table. The path to the kitchen table is well-worn by farm boots. To go into the living room with boots on is a faux pas. Although it may be bemoaned, to the kitchen table is generally accepted.

Farmers discuss who and what they know and expect you to be on the inside; even in if you aren’t from there, the assumption is made that you’ll understand all references. Or, perhaps, it could be construed that if you don’t know it’s none of your business.

Two knives used in Iowa: the butcher knife – obvious use; the paring knife – all other cutting needs.

The state oven temperature: 350 degrees. I’m still leery of any recipe calling for a temperature of over 375 degrees. Ten more years living out-of-state and I might get a bit more comfortable with 450.

The state chicken part: the wishbone. We all fought for it. I’ve never seen it outside of Iowa.

The state line signs: “Welcome to Iowa. A place to grow.”

Bill’s sister’s description of Highway 20, a very straight road across Iowa: “This looks like a long road to nowhere.”

“Is this heaven?” “No, it’s Iowa.” – This famous baseball diamond still exists in Dyersville, IA, just off of Highway 20. Bill and I have played ball there in what seems to be a perpetual summer game. People bring picnics, gloves, bats and balls. Kids get 5 - 10 pitches. Players rotate through the positions without formal set-up or direction. Cornfields border the outfield. A little piece of heaven.



Hungry Cow Mentality

All went well yesterday, yet another long day. However, I made it through the second round of Taxol with no allergic reaction so my last two infusions should be OK. Allergic reactions usually happen in the first two rounds. I took my fuzzy pink socks and my fleece blanket but still couldn’t get to sleep when I felt the effects of Benedryl.

The countdown: two infusions left. I should feel myself, over the final aches from chemo, by February 1st.

I’m back to split shift sleeping. I was up from 1 – 4 a.m. last night. I took Ibuprofen at 4 a.m. as I felt my face start to ache. This morning I’m beet red in the face, so I called MGH. It’s a side effect of the 10 Decadrons I had in preparation for the infusion yesterday.

Yesterday, I needed a little inspiration before going back to MGH. I looked back to a journal entry I made at the end of July after talking to my dad.

July 30, 2009

Dad told me about the neighbor’s cattle getting into his cornfield on the west side of the lane. I asked if something spooked them and if that’s why they lunged through the barb wire fence. Dad thinks they were just trying to get food – not getting fed enough on their side of the fence so they just “went for it” to get the corn. Throwing all thought to harm aside, crashing through to get what they needed: healthy food. Perhaps I will need a hungry cow mentality through chemo. Stop clambering over the fence. Take a deep breath. Cuss a little bit. And go headlong through it, pounding hooves until the last round… and getting what I want on the other side. Leaving cancer behind me.

End of journal entry.

It worked. I put on my gingerbread fleece hat, dangly earrings, and walked into MGH ready to give the fence another strong, solid kick. Mom has always said “kill them with kindness.” Yesterday I turned that to mean keep a smile on my face. I smiled. I said “hi” to the familiar faces, and they returned my smile. I was glad to see those who were helping me kick the fence down. I relied on words from both Mom and Dad yesterday. My face wasn’t going to be one worn down with this exercise. At the end of the six-hour day, my chemo nurse said, “I’m really proud of you. You are sailing through this. And I really mean that.”

I didn’t explain my hungry cow inspirational reading from the night before or the killing with kindness theory. I just said ‘thank you’ when she gave me a big hug as we left to pick up the boys.

Staying strong,


Back to Work

This morning some people are taking a deep breath or sighing in relief that this four days of craziness has ended. I could quite happily exist in that unending pandemonium for a few more days. Instead, I’m heading to Boston at noon for my second Taxol treatment. I took five Decadron last night and will take five more this morning to help prepare my body. It's a double duty med as I used it to keep nausea at bay after the first four treatments, now it will help my body accept Taxol. I’m expecting another seven-hour day and truthfully I’m not too excited about it.

Perhaps it was Christmas coming, but I felt great after the last round of aches through Day 5. It was hard to keep a short leash. I kept thinking of things to do and places to go to celebrate the approaching holiday. All involved crowds of strange grown-ups and children. The Nutcracker Ballet. The Polar Express train ride. Taking the boys to Boston. Running to the mall. I was talking to a friend about this and she suggested just picking one thing and doing it. That was Bill’s work party. All grown-ups. Bill served up my food so I wouldn’t have to touch buffet spoon handles. It worked, and it was nice to dress up and get out. Actually, it worked so well, I decided to go to our neighbors' holiday party a week later -- again all grown-ups and Bill helped me with serving utensils. Another bubbly fun night out.

I went to Bill’s party the eve after my first Taxol treatment. That day at MGH, we had a little extra time between appointments. Bill and I popped into a little boutique for breast cancer patients to see if I could find a festive hat to wear to the party instead of the wig. Several hats were enormous, way too big for my head. Then I saw an adorable black derby-like hat with a small rhinestone pattern on the side and a very thin brim. It looked great on! I turned to Bill to see what he thought. When I looked up at him, the little brim hit the back of my neck and the hat rolled off my head, took a couple bounces, and landed on the floor four or five feet away from me. We cracked up. I thought it was a fluke, but it happened again on the second try.
The saleswoman, who was watching this unfold, suggested wearing a scarf underneath. That seemed to make sense: the hat wouldn’t be against my smooth scalp – the scarf might act like an adhesive. So we tried that. It was a little more stable, but then I threw my head back faking a big laugh and POP! Off it went with a little more force, landing further away. “Guess I’m not wearing a hat tonight!” I told Bill. We thanked the saleswoman. She gave us a rather pitiful “you-have-cancer-AND-the-hat-won’t-stay-on-your-head look.” Later I thought I should have told her I probably could have done the same trick with a full head of hair.

Given I’m 5’4” and a good portion of the Bill’s colleagues are over 6’, I’m glad we discovered the magic in the hat at the store rather than at the party. Although, with a different set of guests, it would have been a very funny party trick. ;)

Staying strong and going back to work,


Capturing Christmas Week in Quotes

While snuggling with Will and wearing my now infamous red Noddy hat, Will looks at me. I expect an “I love you,” but it is Christmas week. “You look like an elf!”

I’m dressed up in my bling and my wig, ready to go to a party, Will says, “You look great, Mom! No one’s even going to know you’re bald!”

Giddy from staying up past bedtime, Liam climbs onto my lap while I’m sitting on the floor. He gives me a monkey hug (with arms and legs) and says in a giggle, “I love you, Mom,” then he stands up and plants several of his signature wet kisses on my bald head. There are a little cool!

I bought firefighter and police tree ornaments for Liam and Will, respectively. While I was holding Liam’s – just about to put it on the tree, he screamed and I dropped the ornament, making a big chip in the firefighter hat. It’s now eternally marked with the volume of my three-year-old’s voice.

The goodnight conversation between Will and Bill. “I love you, Will.” “I love you more, Dad.” “I love you even more, Will.” “Dad, I love you so much my heart’s going to burst.”

Wishing you a holiday filled with heart-bursting love,


Jingle Bells

Yesterday was the first day of Christmas vacation. Will remembered our promise to let Liam sleep in his bedroom during this break. Both were excited, so out came the trundle. Anticipating the giddiness, I knew it would be a late night. At 9:15, I turned my light out to the sounds of them chatting and giggling. Then there was a patter in the hall, followed by Liam tugging the covers on Bill’s side, “I’m scared!” I replied, “You’re sleeping with your big brother; there’s nothing to be afraid of.” Tears. Not a lot of confidence in the big brother theory. I led him back to Will’s room and retucked him into the trundle. He was asleep by 9:30. At 9:45 Will was standing in the doorway. “Mom, you didn’t turn the temperature down. It’s loud in my room, and I need my heating bag warmed up.” Yes, I turned the thermostat down and put his corn bag in the microwave. At least one of us will go to bed toasty warm. By 10:15 Will was asleep.

Somewhere between 10:30 and midnight, Bill came to bed. At midnight, my alarm went off. It’s a new alarm clock and I had just plugged it in last night. Fumbling in the dark, I finally got it off. Ten minutes later the alarm went off. Good to know it has a snooze button. Again I managed to get it turned off. Ten minutes later… Obviously, I didn’t know how to turn the thing off. I whispered to Bill, “I need to turn the light on.” In a fully awake assertive voice, he said, “Do whatever you need to do.”

A couple of times in the night I heard the heat come on. It wasn’t a clanking sound like in Will’s room. It sounded like Santa’s sleigh bells. My first thought was to call the plumber in the morning and make an appointment to get the air blown out of the pipes so they would be quieter. My second thought was to listen for tiny reindeer hooves on the roof.

After I heard the sleigh bells two or three times, Will came into our room with a tummy ache. Probably too much popcorn. Bill got up as Will came into our bed. He reached up and grabbed thirty odd metal hangers off of our metal bed frame. I thought this was a strange chore for the middle of the night. “What are you doing?” I asked. In an annoyed and very awake voice, he said, “Every time the bed moves, these wire hangers that you left hanging on the bed clang together.” So much for the anticipation of reindeer hooves. I had finally taken summer clothes out of my closet yesterday, together with wire hangers to return to the cleaners.

A couple hours later, around 5:30 a.m. according to my clock, Liam cried out. Bill went to see him. He took him to the bathroom then found new pj bottoms for him. I figured he probably missed the toilet as he sometimes does. Then the “you’re-not-my-friend” screeching routine started. Quickly doing the math, I knew if this escalated, I would have a little boy awake for the day with way too little sleep.

Bill was in Will’s bed and Liam was screeching at him. I stepped on the trundle to get Liam and my barefoot felt dampness. “Did Liam wet the bed?” Exasperated, Bill replied, “Yes…” I got Liam into our bed with Will. Sitting in the dark and rubbing Liam’s back, I thought I could happily get up at 5:30 if the boys slept until 7:30. Then I glanced at Bill’s alarm clock it was only 4:30 a.m. In the turmoil to turn the midnight alarm off, I had moved my clock time ahead an hour.

Gentle, loud snores came from Will’s room. Slow breathing and teeth grinding arose from our bed. I could just make out two little heads joined at the top such that I knew their bodies were sprawled in a V over the whole bed. So here I sit on the couch, reminiscing about that magical sound of sleigh bells in the night and how nice it will be to have the boys keep one another company in the same room. This morning that happens to be in our bedroom.



P.S. Bill, up and dressed at 7:20 a.m., just walked by me and said, "Well, they ended up sleeping together."

Chemo Fog

Talking with my oncologist before starting chemo, he asked where I had had a particular test done. I told him I couldn’t remember, that I was struggling with pre-chemo fog. He told me that researchers are studying “chemo fog” to determine if it’s due to chemo or just the stress of having cancer. I’m guessing it’s the stress. It feels very similar to toddler fog. No chemicals involved in that, just a few sleepless nights.

I’m not writing as many lists, trying to capture every tidbit of life’s to-do’s. Many weeks I hone in on the basics: food, clothing, shelter. During the chemo weeks, friends have been a godsend with food. I get a Peapod order together for the weekend, and at last I’m thankful that the boys love mac’n’cheese. I go to the sanctity of the laundry pile when towels and underwear are low. I make sure the mortgage and the utilities are paid.

The next level: taking care of personal needs. Ordering a prescription for Bill. Taking the boys for a haircut. Buying shampoo for myself. Just kidding. ;) I’m realizing how much we are all capable of doing, and I am learning to delegate more. We’ve eaten together as a family of four for three years. Plates, glasses, and silverware have been thoroughly defined. Rather than a beck and call girl to get dinner on the table, I enlist a little help to set and to clear the table.

From here, I start slipping.

The school cold lunch routine is laughable. I have done well not to forget to pack the lunches and the school bags. Always pushing the clock to get Will to kindergarten on time, I often drop lunch bags in our booster seats by the school office, with the intent to put them in the fridge after I take the boys to their classes. I do this discreetly so Liam doesn’t notice and want to stuff them into the fridge himself, making us tardy. In late September, Liam’s teacher told me she had found the bags outside the office and was a little confused by why they were there. Will’s teacher, standing nearby, added that she had found them there a few times as well. As for me – no idea that I had been zipping right past them nearly every morning! I THINK I’m doing a bit better now, but the kids and the teachers have it under control. If the lunch bags aren’t in the fridge, they know to look in the booster seats.

Conversations I have, especially just after chemo, are hit and miss as to what I’ll remember. I will get off the phone and think, “Now why did Jen call?” If the conversation is date related, I stand at the calendar while talking. I don’t want to miss someone stopping by or something going on at school. Still, Will’s parent/teacher conferences came and went without me signing up for a slot, but we rescheduled and made it up.

My mind works like a sieve. Being a recovering perfectionist, my pre-cancer/chemo sieve had tiny holes in it, letting virtually nothing escape. Keeping to-do lists at hand that were a mile long and never completed. The fog has enlarged the holes in the sieve. The rocks – food, clothing and shelter – can’t drop through the holes. The marbles – taking care of personal needs – generally can’t drop through. As for the pebbles and sand, hit and miss. If I get it on the calendar, it’s a hit. The strange thing is that I’m pretty much OK with this. I’m not stressing out over little things. I’m not over-committing. I’m working on Christmas cards. If all aren’t sent before Christmas, I’ll be wishing friends and family a Happy New Year or Happy Valentine’s Day. People do enjoy receiving mail at times other than the holidays. Santa’s letters aren’t written yet, but he doesn’t fly until Christmas Eve and has enough elfin magic to work on short notice. Plus, he already knows the kids have been nice. We bought a real tree and decorated it not in an afternoon but gradually over the course of two days. It’s up; it’s beautiful; all boxes are now out of the dining room and back in the loft.

I can’t clear all the fog. But with a little red-nosed glow, I can get to where I need to be. In the moment. Confident that the details, if really necessary, will one way or another get sorted out.

Staying strong and wishing all of you a glowing holiday,


Dancing with a Foreign City Slicker

In 1989, a friend introduced me to her soccer coach but told me to take heed as he was a real partier. Six weeks later, I was dating this humorous man with an intriguing English accent. Three months later, we were driving to Iowa to spend Easter with my family. After we crossed the Mississippi River and entered Iowa farm country, I began my tutorial in Manure 101. The smells along the way were clearly defined for me by my nose. I tried to describe the scent we smelled so as to help Bill differentiate between cow and pig. They were so obviously different; I was having a hard time understanding why he couldn’t smell the difference. Pig manure is stringent. It really stinks and lingers unpleasantly. Cow manure is mellower; it lacks the pungency of that of the smaller hoofed animal. While this lesson entertained us for 1 ½ hours, I was unsuccessful. About five years later, I would realize that Bill really can’t smell much of anything. During this trip, he was most likely making guesses based on nothing he could smell. He was just appeasing me. Wooing me across the heartland.

Arriving at my parents’ house, Bill picked up his duffel bag and I heard a clanking. I asked what it was. “I brought a couple bottles of wine for your parents.” I popped his bubble, “Oh…. They don’t drink.” This grandson of a London pub owner looked at me somewhat bewildered. After the Easter turkey dinner, the bewildered looks jumped to the Murphys. As Bill stood up to help Mom clear the table, amidst blank looks from all the other men still seated around the table, Bill asked, “Could we save the turkey drippings for breakfast?” “Of course,” my mom obligingly replied. She didn’t ask questions. The next morning, baffled by how Bill was planning to dine on drippings, Mom offered to heat them up for Bill. Bill replied, “Oh, no thank you. I just spread it on toast.” “Oh… OK.” No one joined him. (Sidebar: According to Bill, this year’s drippings were excellent. The butter and whole herbs must have added to the flavor. I was also informed that his morning-after tradition isn’t as enjoyable if I’m in the kitchen. In my presence, he feels guilty slathering on the turkey fat. My look has nothing to do with his arteries; I’m just still a little grossed out by the breakfast, even after twenty years of the tradition. “You don’t have turkey drippings every day. I really don’t mind if you have it on occasion,” thinking quietly to myself, just don’t expect me to join in any time soon.)

After we were married, trips to Iowa continued to be learning experiences for all involved. Bill loves getting his hands dirty in projects with Dad and my brothers. One day Dad told Bill to get a pitch fork out of the barn. He went to the middle of the barnyard, stopped, looked at the four buildings, and then came to find me. “Linda, there are four barns out there. How am I supposed to know which one the fork is in?” I went outside with him and started my Barnyard Building 101 tutorial. I pointed to each one and identified them: the shop, the corn crib, the hay shed, and, finally, the barn. I half expected to see Dad laughing behind one of the buildings.

A couple years later, on another adventure in Iowa during corn picking season, all the machinery was in the barnyard. Bill came over to me and said, “You’ve got to see this little field mouse by the combine tire. It’s tiny and the tire is so huge.” I asked, “It’s just sitting there?” thinking it was probably sick. Bill nodded with a smile. I went and had a look. Dad came over to see what we were gawking at. He looked down. “What the hell?” Then… stomp. My delicate dance I had been doing with a foot on either side of the Mississippi ended in a collision of unspeakable magnitude. City meet farm. Dad didn’t miss a beat; he went back to work, but I’m sure Bill’s heart momentarily stopped beating. We didn’t talk about the incident on Murphy soil, but later that day, about the time we were crossing the Mississippi on the way home to Illinois, Bill simply said, “Ya know, I’ve been thinking about that mouse.” I tried to explain that to Dad it was a small version of a big rat, and rats tend to run up pant legs on occasion. Again, my explanation was unsuccessful.

After the mouse incident, Bill placed a special order when Mom wondered what cuts we wanted from our half a hog. Bill asked Mom to get the kidneys for him. “Of course,” mom obligingly replied. This time he explained. Steak and kidney pie was a tradition in England. I’m not sure how Mom told the butcher she wanted pork kidneys, normally refuse. Perhaps the explanation went something like, “You see, my daughter is dancing with a foreign city slicker…”



Strong Urges

Since August I’ve been given numerous fliers and web sites to study the side effects of the three chemo meds that are in my protocol. I’ve been meaning to sit down and spend a day studying all of it, yet I haven’t made the time. What a dreary day that would be. I’ve scanned the information, but not memorized it so as to make each one come to life through fear.

During appointments, I talk to my doctors about the most likely side effects and how to manage them. I email or call my doctors when I have a question. I call the strong formidable women who’ve walked this road and ask pointed questions. These women know first-hand what to expect and they are usually right on.

Over the last few months, these same women have shared a more important list of “side effects” they’ve experienced through cancer and/or chemo. From their knowledge and my experience, I’ve made my own list:

Strong urges…

To live

To rip off my wig in front of two women smoking on Main Street and scream, “Are you crazy? Don’t invite it in!” (No I didn’t, but the urge was nearly unstoppable.)

To speak my opinion

To vigorously write

To protect my port from hot shower water, afraid the metal might overheat under my skin. (Probably an unrealistic fear.)

To do

To not wait for the perfect time

To make my head comfortable – hat on, hat off, wig on, wig off – throughout the day and night

To get on my knees and play

To pray

I don’t recall any of these side effects listed in the information dispersed from the medical community. Yet, for me, they are real.

Staying strong,