Author: natasha

I was on my way to work yesterday with nothing particular on my mind when I came up on a van with a bumper sticker in the rear window. Even though I was on the highway, I read it. It said, “My son was killed by a drunk driver.”

It was such a jarring phrase, such a well-aimed shot to the heart with simultaneous punch to the gut that I audibly gasped.
I wanted to pull the van over and hug the driver. I wanted to tell the driver how sorry I was. I wanted the driver to tell me a story about his or her son so that I could remember him too. I wanted something. I didn’t want to just read that bumper sticker and keep on about my day.

And I guess I didn’t since the bumper sticker followed me around all day. I could not get it out of my mind. I thought about my reaction to it and how my immediate response had been empathy–not an emotion I am used to feeling on the highway when I often mentally (and sometimes audibly) berate my fellow drivers. As this bumper sticker hounded me, I wondered what life would be like if we all wore our hurts as bumper stickers on our cars. As pins on our jackets. As tattoos on our foreheads. Some of us might have a lovely clean rear bumper. Others might have pins on their jackets rivaling a “Fridays” waiter. But I can’t imagine that all of us wouldn’t have something that makes us vulnerable. Some hurt that shows how deeply human we are.

How might we treat one another then? What would we say to one another? How might we interact?

If nothing else, I imagine it would make me a much more forgiving highway driver.

Mark and I met with my oncologist last week to go over the effectiveness of the Navelbine as well as the results of the study I am now part of.

The bummer is that the Navelbine is not working, so it’s on to something new.

The great thing is that the report from the study gave us a bunch of options. The top ten options it suggests are ones that my doctor says he would not have thought of–mainly because they are related to the hormones that feed the cancer (my doctor thought we were past those) or they are drugs that are not normally associated with what we had believed my cancer to be. For instance, some of them are used for HER2-neu positive cancers whereas we believe mine to be HER2-neu negative.

So, starting on Friday I began a new oral medication which has some hormone elements to it. It is often prescribed for AIDS patients and people struggling with anorexia–it is a major appetite stimulant. I find myself waking up and thinking about food.

My doctor is also working on getting an IV drug approved by my health insurance. This will be either Tykerb, a chemotherapy, or Herceptin (this is the drug often used by people with HER2-neu positive breast cancer). I am hoping that the Herceptin gets approved since it is administered every three weeks and has minimal side effects.

It always takes me a few days to digest a change in treatment. I need time to wrap my head around it and get into the game again. I’m getting there. My mom pointed out yesterday that it’s been almost a year since we’ve had a drug that has been really effective. No wonder these game changes get tiresome.

But Mom also pointed out how providential it is that I am part of this study and that the drugs that are recommended for me are ones that even my cutting-edge doctor would never have anticipated. This is truly extraordinary and we are so grateful to God for the opportunity to be part of it (and to the generous folks who funded it for me–you know who you are!).

Our visit with my doctor was a long one and, as usual, Mark and I hang on each word and phrase that he says–tossing them back and forth to one another as the days go by and we process what we heard. But there is one phrase that my doctor said that I return to repeatedly. As we were looking at the list and I saw a drug that I had seven years ago which I found terribly distasteful I said, “do we have to do Epirubicin?” His response, “Well, we’ll probably do all of these over the next 25 years.” You can imagine the satisfying way that simple phrase from my trusted physician turns over in my mind as I calculate and bargain and calculate again.

Hope is a lovely thing to get for Christmas.

I didn’t do a very good job explaining the study that I’ll be entering. It’s not a comparison of others like me, it’s a comparison of the genetic mutation on the DNA strand of the tumor against the world literature. So, the drugs that have been developed for the specific genetic problem will be recommended. When I asked if what the chance would be of it coming back with no recommendations, my doctor looked at me incredulously and said, “None.”

The fight, then, is definitely getting personal. YAY!

This week is an important one for us. I will be having a lung biopsy on Wednesday. A sample of my tumor will be sent to the Van Andel Institute where it will be genetically mapped. It will then be entered into a database containing the information of many other people whose tumors have also been genetically mapped along with our medical histories. A report based on this information will then be generated to recommend treatment for me. Rather than just knowing whether or not the cancer is HER2 negative or positive, etc., this goes down to the actual DNA. It’s as detailed as it can get–and as unique to each individual person and his or her particular cancer as it can get. This is called “personalized medicine.”

I am not worried about the lung biopsy. My only fear is that the report would come back with no recommendations. I know that even if this were the case the Institute will continue to collect information and will continue to generate reports as time goes on. But there is something about having an immediate recommendation that would be extremely heartening.

So, cancer, look out. This fight’s about to get personal…we hope.

It’s about time to post again. The last stretch has been rough. I have had days filled with calls to different doctors. I have left work halfway through the day twice, once to get to an urgent care facility for treatment. I have felt downright miserable.

Interestingly, this misery; missing of work, lolly-gagging in bed, stacking of pharmaceuticals on the kitchen counter, getting familiar with the heating pad, etc. etc. was not due to the cancer that threatens my life or even directly to the treatment it demands. No, the misery came courtesy of…the common cold.

Said cold has worked it’s way around my head and neck for over four weeks. The sneaky virus started with the feeling of swallowing glass and then went into my head and gave me a sinus infection. Combined with the new treatment (and it’s presumable new side effects), I was left with a soup of maladies and not much clue as to what bit of trouble came from what source. Was the stabbing pain in my gut a side effect of chemo or simply the loud complaining of overused coughing muscles I didn’t even know I had?

Today, I finally feel a lovely break in the clouds. My coughs are the cough of a normal person, not the hacking up of a lung and the lovely sounds that accompany it. I blow my nose throughout the day and find I haven’t emptied a whole box of tissue. My back and stomach muscles, which had gotten terribly sore after all the lung activity, have begun to feel better. And, to top it off, I was not given chemotherapy this week because my white blood counts were iffy. Today, I feel almost normal–just in time for a wonderful Thanksgiving.

I’m not sure why the cold took such a toll on me, but it did. Somehow, to have such a stark change in my health really knocked the breath out of me. Perhaps if it hadn’t come just as treatment was changing I would have weathered it better and even recognized it as something that would pass, but instead I found it really disheartening. There is something about feeling rather healthy that allows me not to worry about cancer. For instance, I usually have this triumphant feeling when I do the laundry and find I’m washing a nice percentage of workout clothes. “Take that, cancer,” I think as I throw the sweaty socks into the washing machine, “Is this the laundry of a sick person? HA!” These past weeks, however, I noticed that the percentage of laundry usually taken up with workout clothes was slowly being overtaken by pajamas. Last week? Almost my whole laundry basket was pajamas. Now that felt like the laundry of a sick person. Yuck.

So I’m doubly glad to feel as though this cold is receding and I am coming back to myself. Ready to go on a long walk tomorrow. To fire up the treadmill. To pack away the heating pad. To clear the medicine off the kitchen counter. To pull my weight at work.

To live this lovely life I’ve been given with all the gusto I can muster.

Welcome back, gusto, you’ve been missed. Stick around, will you?

Mark and I met with the doctor today. My heightened blood counts last week had warranted a CAT scan on Friday and meeting with him today. It was a long meeting after our usual long wait at the end of a long day, so please forgive the spare details.

In essence, the activity the blood counts had alerted us to was evident on the CAT scan. My liver looks stable. The growth is happening on the nodules in the lungs. Dr. Campbell has several ideas of what to do once we get the lungs back under control, but for now, the plan of action is this:

I will begin weekly IV chemo next week Tuesday. I haven’t had IV since July and it has been a welcome and wonderful break. This drug is called Navelbine and should be similar to my former chemo in terms of my ability to tolerate it (i.e. no nausea or hair loss).

We are also seeing if I might qualify for a study, the details of which I won’t go into here, but it is related to “personalized medicine” that you may have read about–gene mapping the tumor to see what it might best respond to. If I qualify for the study, I’ll get more detailed.

I’m hoping that my cold is gone before chemo starts next week. My throat is very painful and each cough puts Mark, understandably, on edge. It would be nice to start out feeling as good as I’ve been the last new months. We’ll keep you posted.

A few Halloween photos including: Mark and Zoe’s power tool pumpkin. Tonks, Batgirl, and Hermione Granger before trick-or-treating. And Professor MacGonnegal with her favorite student, Hermione Granger. Also, the headless horseman’s hairy canine mount.

Seven years ago, when I was enduring chemotherapy, I came across this quote:

Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth or bury my face in the pillow or stretch myself taut or raise my hands to the sky and want, more than all the world, your return. -Mary Jean Iron

The normal day. Even the last two years on milder chemotherapy, it was the normal day that I pushed for. A day without exhaustion and a dry mouth. A day of running errands, not a running IV.

And now, thanks to the three pills I swallow each morning, I have it. I walk my daughter to school in the sunlight. I wake up thinking about what I’m going to do with the day rather than gauging how I’m feeling. I sign up for field trips with Zoe’s class checking against my work calendar, not my treatment calendar too. I go into work early and don’t crash by 2 p.m. Zoe goes to an evening event and asks me if I’ll be in bed when she gets home. “Bed?” I think. “But you’ll be home by 8 o’clock.” Oh, right, 8:00 would often find me in bed last year. My mom and dad plan their October trips without worrying over who will be accompanying me to treatment and checking in with me each day as to how I’m feeling. I do my daily tasks, the laundry, the cleaning, the grocery shopping, the cooking, all without calling in the usual reinforcements. My bed does not call to me during the day. I actually have time to do crafts and the energy to entertain friends. Mark and I have actual conversations after Zoe is asleep.

This is the me I remember. The one who’s been gone for awhile but is always welcomed back with open arms. The capable and competent me.

Normal day, I’m aware of the treasure you are. Am I wrong to want to hoard you?

I decided it for good today: I’m not doing the Race for the Cure this year.

For some reason my usual excitement has been absent. I’ve been dragging my feet about registering. The date for the race has been sneaking up on me and rather than welcome it, I’ve quickened my pace to outsmart it.

I have no idea what this is all about. I certainly remain committed to finding a Cure for the disease that plagues me and thousands of others.

But I want a break. And so, this is the Year of Jubilee. It would have been my seventh local race. The seventh time I asked you for money for this important cause. So, six races under my belt, I am having a Sabbath. A Year of Jubilee. A whatever-else-you’d-like-to-call-it-that-will-make-me-sound-thoughtful-rather-than-wish-washy.

Last weekend Mark and I threw off our hermit mantles and ventured off to a lovely cocktail party thrown by lovely friends we seldom see and hosted in a home I just might sneak into when the owners are away. It was beyond beyond and just the lively fellowship we needed. Thank you, Cole, Amy, and Dan!!

A highlight of the evening was being introduced to Laura. Laura is just entering the “wait and worry” stage of her cancer journey. Finished with surgery, chemo, and radiation with fresh fuzz on her head, Laura whipped off her wig with panache. While our lives are affected by different cancers, it was good to swap stories and encourage each other. It reminded me of my hungry phase when I just wanted to meet other survivors and bathe in others’ “it all turned out OK” stories.

It was during my hungry faze that we first got started doing the Race for the Cure. I still remember our first Survivor Dinner before our first race. I had talked Mark into it with the assurance that we’d meet other survivors and assured him of how much it would bolster us. And so to the Penn Club we went, me with fuzzy hair, Mark and my parents emerging from the tunnel that was treatment with a rather blinking expression. “We’re doing what, now?” “Huh?”

We chose a table off to the side a bit hoping for some great conversation with our table-mates. Our party of four was joined by a party of three: a woman, her daughter and son-in-law. The woman was the survivor. Or should I say “survivor.”

Through the course of the evening I peppered her with questions eager to find some commonality. Not far in I learned this…She had a tumor. It had been benign. BENIGN!! The word every survivor in the room would have given anything to have heard. The four of us started out confused. We slowly turned to incredulity and by the time the evening was over, I was in full blown rage. We left quickly and without a word. I took the cake from the middle of the table just for spite.

Not ones to give up quickly, we signed up for the survivor dinner the next year. Again, my parents were our guests. Mark and I got there early to secure a table without any crazies. We were soon joined by a young man who was saving two chairs. Now, because I’m telling the story you’re guessing it, but Mark and I were completely flummoxed when through the crowd emerged the fake survivor and her daughter. Too late to switch tables. Didn’t help that when it was just the young man, Mark and I had regaled him with stories of the fake survivor from the year before. No wonder he had wriggled in his seat.

So there we sit. The seven of us again. Me fuming. My parents incredulous. Mark wanting to leave.

And so, I prayed. God, give me the words I need to talk to this woman. If I’m not supposed to talk to her, let me know we need to leave. Help me here. Help. Help!

Dinner had been cleared. Dessert served. Dad left to find coffee and I took his seat beside fake survivor. Mark and Mom suddenly found many things to talk about so as not to look at me. Son-in-law came behind fake survivor and held her shoulders perhaps the only one in her party who knew the power of my rage. Dad walked in and saw me in his chair and promptly turned on his heel and walked back out.

I don’t think my voice trembled too much when I told her how insulting her charade was. That the term “survivor” meant there was someone with whom I could discuss the hell that was initial chemotherapy, the trauma of surgery, the hyper-awareness of every little thing wondering if it had returned. I told her that she insulted the women who had lost their lives to this disease as well as the families they had left behind. I talked. She cried. She talked about siblings who had died from lung cancer and how her doctor’s office had called her a survivor. “But you’re not a survivor of this,” I said, “you may be a survivor of something else but not this.” I asked her if not for me, then for the three people who had walked through the flames with me, the people eating this dinner beside me, please do not insult their journey. For the other families here who have endured and persisted, who have put one foot in front of the other. Please do not belittle it. Please don’t do this anymore.

She gave me this promise. On race day she would go to the registration tent and tell her story of the benign lump. She would ask them, she said. She would ask them if they would consider her a survivor. And she would from then on wear the appropriate shirt. White for participant. Pink for survivor.

I didn’t see her on a race day and I have not seen her since. But Mark did. And he noted the color t-shirt she wore in order to tell me later. What was it? White or Pink?

I’ll leave the answer to that in the comment section so that you have time to guess. And I’ll remain grateful for all of the wonderful conversations I’ve had with others who have walked similar turf. Paths of loss and fear. Trails marked with uncertainty and vulnerability. And I’m grateful that my anger at fake survivor is gone and replaced with pity. If I can say anything for her, at least she knew, like a poser at the VFW, that survivors had something good going and she wanted to get in on it. She certainly was right about that. My conversation with Laura this weekend just one piece of plentiful evidence.

All the best to you, Laura–to the journey behind and the journey ahead! To your eight year old daughters and your dear husband. Keep whipping off the wig with panache!!