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,

Linda

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