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,

Linda

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,

Linda

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,

Linda

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,

Linda

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,

Linda

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,

Linda

Wednesdays

I have realized that Wednesdays are good. I’m either coming out of the fog and ache or coming out of the Nadir period. Wednesday before Thanksgiving I felt tightness all around my incision areas and in my chest. As no one from my oncologist’s office would be in Friday when my chemo was scheduled, I decided to have it checked out Wednesday. I was convinced it was probably fluid collecting, which can happen after this type of surgery, and it would need to be drained. Plus, I mentally needed confirmation that it wasn’t an infection before another hit to my immune system.

The nurse practitioner did a thorough exam and decided it wasn’t fluid. My lungs and heart sounded good. She looked at me and rubbed my left shoulder, “I think you’ve pulled muscles. You’re hunched over protecting your left side. Have you lifted more than normal?” Not that I could think of. “Do you have small children?”

Oh, do they count? I hesitated as the events of the last week flashed before me. Liam wiped out running full-out on the school pavement 100 yards from the van. Yes, there was that 40-pound dead-weight lift from the ground that day and the carry to the van. And then there was the rainy day I boosted him in and out of the van. And the day Will was in tears, so I swept him off the floor onto my lap. “Yes, I have small children.” I felt guilty confessing. “Do you lift them?” The viper-mom in me raised her head and started flicking her tongue, wanting to defend and if necessary attack. I so wanted to reply with my own question in Tom Cruise’s “You-can’t-handle-the-truth!” voice, “Do you have children?” But I stopped. Tamed the viper. I knew her job was to take care of me. My job is to take care of them. And we would have to negotiate a happy medium, which may include a little Ibuprofen to calm the muscles.

My prescription was for my husband to rub my left shoulder. I so wanted to ask for a written prescription to give Bill, but this was the first time I had met this nurse practitioner. I wasn’t sure about her humor level.

At 11:30, happily diagnosed with pulled muscles that required no draining, I decided I could celebrate by having lunch in Boston. White blood cells should have bounced back, appetite was good, achiness was gone. I confirmed with an employee in the elevator that Antonio’s, just across the street from the hospital, was a good little Italian spot. I felt like a kid in a four-story toy store; it was only the 2nd time I’ve been in a restaurant since early October. When I opened the door, the smells of tomato and garlic wafted by me. A crooning Frank Sinatra ushered my ears to the table. Sitting in a restaurant, able to eat shrimp over ziti in a vodka sauce with a little kick. Dipping fantastic fresh Italian bread in olive oil. (Admittedly, I did Purell after feeling the stickiness of the oil bottle. A little germy. Gross.) Then, Spumoni for dessert. But I couldn’t stop there. I thought I would share my happiness with Bill via a piece of tiramisu for dessert after dinner that evening.

Whilst dripping in phenomenal sensory overload, I sat in a safe haven. Hospital staff and restaurant workers, all familiar with chemo baldness. My hat-covered head joined by one other woman in the restaurant from the same planet. She too looked incredibly happy.

Staying strong,

Linda

Halfway done!

We just got home from MGH. I'm halfway through chemo! And I didn't have to stand on my head to get the port to work!

The next four sessions will be infusions of Taxol. I was told today that there is less likelihood of nausea with Taxol; no set nausea meds to take after the first infusion 12/11, only a boat load if I happen to experience nausea. Unsure of the side effects of Taxol, one friend on Taxol now said there was more achiness, but she's on her way to New York City tomorrow, so I don't think it has phased her to much.

We had a lovely Thanksgiving dinner, eventually. Watch for a longer story on Turkey and Fire. :) No damage, just a bit of excitement. It was made a true holiday by many. Our friends from New York City cooked and ate Thanksgiving dinner with us, complete with roasted chestnuts and the best stuffing ever. Friends near and far sent goodies and recipes for my friend Carol to make for us. Cranberry muffins, salad oil coffee cake, pumpkin muffins with cranberry & apple compote, banana chocolate chip muffns. Plus some English goodies to top it off, tucked around a Christmas cactus and a mum. And, we rounded out the week's meals with your gifts for "Fill the Freezer" with frozen food from Trader Joe's: a curry evening, lobster ravioli, pesto and tomato pizza, plus lots more goodies in the freezer. It felt like all of you were here.... and we cooked enough food that you easily could have been here and not gone hungry! Thank you!

Looking forward to a quiet weekend with my family.

Staying strong,

Linda

Frustration

This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”

I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.

For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.

Staying strong but feeling ornery,

Linda