Category: life

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!!

It is easy to find things to lie awake and worry about around here, and I certainly worry my share (though not nearly as much as I used to). But of all the worries that visit me on the occasional sleepless night and random low day, I have a “favorite”…

I am not insured. As in, I don’t have life insurance.

It seemed like such a silly thing to spend money on when Zoe was conceived. Such a crazy hedge against the improbable. I would look at ads in women’s magazines for life insurance and shake a proverbial fist at the fear-mongering I perceived. I would often do the same at the discomfiting breast cancer awareness ads. I am now thoroughly humbled, as you can imagine.

So, attempting not to wallow in the regret of my lack of insurance, I try to save money for some nest egg that will somehow protect Mark and Zoe from being highly physically inconvenienced in the event of my demise. How much would it cost, I wonder to myself, for a cleaning lady, an accountant, and a prepared meal every night? Also, a lawn service and a snow removal service. Oh, and someone to pick up the groceries and the dog poop. Tasks pop up as I find myself doing them and I think “put that on the list to be hired out” and the amount of the fictitious nest egg grows. Apparently, I’d like them to never lift a finger, believing somehow that this would be comfort enough in my absence.

But, of course, I’ll never save the right amount even if I were capable of it. And yet, the worry and the amount wriggle their way into my brain.

Or, I should say, they used to wriggle their way in. Until I read this book.

Passed to me by my uber-reading friend, Sara, it is a book of narratives of Jewish survivors of the Holocaust who lived into adulthood. Never sent to internment camps, they spent the duration of the war being hunted like animals, hiding, and being hidden. They are called “The Hidden Children” and for many years were not acknowledged by camp survivors as true Holocaust survivors.

I am all about reading survival stories and this was why Sara passed the book to me. But, as with other survival stories I have read, this one gave me a completely different life-changing message than what I expected. When these children reached adulthood they carried with them many things, but the thing that struck me was this; for the most part, they eschewed money.

They earned money, of course, they had jobs and careers and significant achievements, but the money was meaningless. One woman talked of hoarding food but not knowing remotely how much money was in her bank account. There was a time when her money couldn’t buy her food, so having food was more important than any money in an account.

I was telling this to my nurse during treatment one day. We talk books all the time. And I didn’t realize what I was saying until it came out of my mouth. It was something like this, “So, when I look at these survivors and how money means nothing to them, and I worry about not having life insurance, I guess I think that there’s no amount of money that would protect Mark and Zoe. Instead the wealth that we have is in relationships. In the people who love us and will continue to love them and be with them and help them. I guess the relationships are the wealth and the money is nothing. For these survivors of the Holocaust it wasn’t the money they had that protected them, it was the human relationships–other people who were willing to see them as hurting people and help them. The money was useless.”

And so this is what I tell my recurring worry. While I point out my current healthy capability, I remind myself that no amount of money can stanch any grief. Rather than think about the task that would go undone or hired out, I think about the people who love us. And that turns the worry into gratitude and joy for what Mark and I have called our “deep bench”–the web of people who have held us closely in the past and hold us gently now. And I sleep soundly thinking of who I might call/work beside/have coffee with in the morning.

Thank God for you. Truly.

Mark and I learned this afternoon that the cytoxin pills I am on have stabilized my tumor marker counts. These counts had been doubling previously and now they are essentially the same as they were five weeks ago when I started the new med.

So, I get to stay on it at the same dosage. I’ve been handling the drug very well (the blood transfusion was a great help) and feel virtually no side effects. I haven’t had the chemo-free summer I was hoping for, but this is just a good! I’ve had the energy to thoroughly enjoy our family vacation and the pool. I’ve even stayed up late to enjoy the wonderful nights of Michigan summer.

Thank you dearly for your prayers. It is nice to get good news like this!!

Same dress. Same haircut. Same sense of adventure. Lucky cousins.

Same shirt. Same pose. Same voice. Same walk. And we expect people to tell us apart. Me and my favorite sister. Lucky me.

Just returned from the oncologist where we learned that the intravenous chemotherapy I’m on is likely no longer working. Time to switch. So, on Monday, I’ll start a cytoxin pill. I’ll be on it for 4-6 weeks at which point we’ll know if it’s working. We’d greatly appreciate prayers that the cytoxin is effective.

I’ll also be getting my first ever blood transfusion tomorrow due to my persistent near-anemic state and the likelihood that the cytoxin would drive the hemoglobin lower. I’m greatly looking forward to the energy this should provide me since I’m in my pajamas as I type this and it’s only 6:30 p.m. and brightly sunny outside!

Zoe has been participating in a day camp this week. It is run by a regular overnight camp, but they take the fun on the road and do day camps throughout the midwest. All the craziness without the homesickness. Zoe is in heaven.

As I dropped her and her friends off this morning, I watched the counselors. Full of energy, singing camp songs, bouncy in their athletic sandals, wearing the proverbial whistle around the neck, these folks are chock full of love for kids and love for Jesus. My daughter believes they hung the moon.

Just looking at their youthful exuberance makes me tired.

Loping back to my mini-van, too pooped this morning to do much more than slam a baseball cap on my head, I thought, “really? I was one of them at one point?” And at a sleep-away camp no less. On a lake. With swimming, and singing, and archery, and rustic camping, and discipline, and, and. Really? I did that? I shouted camp songs? Threw people in lakes? Did silly skits? All on very little sleep? (must fit in a camp romance and practical jokes sometime, you know!)

I did. For three years. It was the experience of a lifetime with friendships made that are irreplaceable (ahem, ahem, Naomi please come home already!) And some of my favorite campers are my friends on Facebook and mamas themselves.

Though watching the perky counselors this morning made me tired, it also made me grateful. Grateful that the world keeps spinning, and that I keep aging (birthday this week–yahoo!!) and that God brings up more youthful Naomis and Randys and CJs and Marks and Denises to make camp what it is for kids. It’s a wonderful thing.

Thank goodness someone has the energy for it.

Photo evidence of perkier times:

More than once I have been prayed for/spoken about/mentioned as being “ravaged” by cancer. The person describing me as “ravaged” is, without fail, kind and well-meaning. Very kind and well-meaning. But each time it happens it makes me think, “am I being ravaged by cancer? I don’t feel ravaged…” In fact, I have never felt ravaged by cancer. Aside from the original lump seven years ago, I have never felt any effects of the cancer at all–only the effects of the aggressive treatments it demands.

I have also had kind, well-meaning, wonderful folks ask me if I am in remission. The thinking goes, I believe, that if I am not currently dying, then I must be in remission. Not in remission. Rats. It is often hard to explain how it can be that I have a job, do the laundry, mow the lawn, play word games on Facebook, and shop at IKEA if, indeed, I still have cancer. Fighting it should be a full time job, the mindset goes, and those walking about like the rest of us must then be in remission.

It’s an admittedly confusing state, this place between ravaged and remission.

Mark read an article years ago in which the author and his wife described her cancer as the dragon. The dragon who lay curled within her, ready to consume at any moment, but somehow strangely stupefied or asleep. He might fully awaken at any moment, but for the most part they were able to keep the dragon woozy. There were times he might stir in his sleep. Time to change meds. Times the dragon might rouse a bit more. Ablate the liver. But for well over a decade they were able to keep the dragon pacified and live their lives.

This is where we live–the place between ravaged and remission. It is the internal dragon’s lair. A place around which we tiptoe and whisper, going about our lives hoping not to make too much noise as to wake him. No sudden movements. No risky business. No moves out of state or going against the recommendation of our trusted oncologist. Early bedtimes and regular walks. Family photos and the eating of vegetables. It is a confusing place, but we have been grateful to live there for the years that we have–and hope to live there many, many more.

Each prayer that is said for us keeps us calm. Thank you. Each inquiry that you make of us lets us know your love. We are so grateful. You are our knights and ladies in this strange skirmish of ours. In this confusing dragon’s lair between ravaged and remission.

Sitting by the pool, Sara waggled her magazine in front of me. “You need to write this,” she said, pointing at the “Ten things I learned from my dad” article. “No,” I said, “I don’t write things like that.” “Yes you do,” she said, “and you should do it for Father’s Day on your blog.” “No,” I said.

Then I promptly went home and started making notes.

10 things I learned from my father in honor of Father’s Day:

1. Just because the phone rings doesn’t mean you have to answer it. Otherwise known as pure agony for middle school social butterflies who jump each time the phone rings in the pre-historic era before answering machines. Pinned to our dining room chairs Becki and I would be squirming and begging while the phone rang in the front hall. “They’ll call back,” Dad would say. But Becki and I knew that Kristi/Tim/Denny/Kevin/Julie would indeed not call back. That failed phone call the nail in our proverbial social coffin. Chris would smirk–the phone never for him–and enjoy our torture. Dad was right, though, 30 minutes later the person would call back. And it was always Shirley from church calling for Mom.
Now, my phone following me when I leave the house, I actually employ Dad’s motto just for the pure freedom of it. If only my students would do the same!

2. TV makes your brains as big as peas and your eyes as big as watermelons. This was the theory of the ruling Luddites of the house, convinced that television had no educational merit. It was absent from our house until Chris bought one as a computer monitor (ah, the VIC-20!). Mom and Dad, true to their word, had the channels removed from the television so it could serve its sole purpose as a monitor. Again, the agony. It looks like a TV but it GETS NO SHOWS! Again, Chris with the smirk. Not until the summer of my 16th birthday did an actual television with channels enter our paneled basement and only because Mom and Dad wanted us to be able to host our friends for VCR movie watching.
Now, when reality TV makes our cultural brains as big as peas and our collective eyes as big as watermelons watching each and every twitch of the newest reality star I realize that Dad was on to something.

3. When in doubt, throw it out. This was not easily adopted by me after Dad convinced me to donate my favorite doll to charity and Mom was left calling around for “a doll with a double hernia scar drawn on in marker” to rescue her. Alas, the doll was lost to the fates. But now, in charge of my own storage spaces, I see the great freedom of the purge. After a truly satisfactory donation run there is a space in my head that is full of possibility and creativity. I have only regretted a few things I’ve gotten rid of. And right now, I can’t recall any of them other than the doll. Not bad.

4. Write your Chinese cookbook. This advice was given to Dad from a military colleague as a suggestion when deployment became tedious and the waiting was getting to be claustrophobic. In the vein of just do something, the man suggested he “write his Chinese cookbook.” For Dad, this meant exploring the German countryside and learning the language when his deployment to Germany lagged. I have found this advice helpful when I am low on energy and high on anxiety. Just doing something, writing my proverbial Chinese cookbook, always helps.

5. Plant flowers around your foxhole. Another bit of military wisdom this time from Dad’s tour in Vietnam. Feeling depressed? Beautify your surroundings. It always helps. And you wonder why I’m constantly re-decorating my house! Dad is always my willing co-hort when I take on a project protesting that he “doesn’t do it for his health, you know” but I beg to differ.

6. There is nothing like Lake Michigan. Dad will drive out to the lakeshore on any given summer evening to jump into Lake Michigan provided there is no ice on the water. When we were kids he would preach with his swimsuit under his preaching suit so that we could jet out to the lake right after the evening service. He’s right. There is nothing like Lake Michigan. Hands down.

7. No need to floss all your teeth, just the ones you want to keep. Dad’s teeth could be all he needs to pass as British, and yet he has fiercely kept them in his head even when his own parents had theirs yanked in their early twenties to make room for the technologically superior dentures. When we would moan about flossing, Dad would give us this particularly annoying adage. However, applied not just to teeth, but to the rest of life, it has grown in popularity for me. It boils down to, “take care of your stuff.” I try. I’m not as good at it as Dad is, but he’s a bit of an anomaly, I think.

8. Clean the kitchen while you cook. This is great advice. It allows for the cook to actually relax during dinner and enjoy the company. I expect Dad’s reasoning has more to do with the German efficiency of a clean kitchen than the enjoyment of others’ company, but either way, it works. I can’t not do it.

9. Miss Herrema is O-K. “OK” here does not mean simply fine. It is meant in the 1950’s sense of the word and, said with emphasis it means something like, “Your grammar teacher whom you both idolize and fear and about whose homework you are now whining is the best teacher in the world and you are lucky to benefit from her tutelage. Any complaining on your part makes you look like a lousy ingrate who doesn’t know how good your education is.” It also means, “We will always stand behind your teachers. No. Matter. What.” And Miss Herrema was a amazing teacher. I will diagram that last sentence just to prove it to you.

10. You’ll get over it. This heartless phrase was probably appropriate to the proliferation of skinned knees we offered up for sympathy with alarming frequency and Dad would have gotten away with the dismissal until…he said to me when I was crying over a red bump and it turned into chicken pox. He has not heard the end of the this error, but now that I’m a parent and each scrape comes my way for sympathy I am tempted to say, “you’ll get over it.” Fear of the red bump has kept this from coming from my lips, but I see the temptation. And, again, Dad is right. We do get over things. Chicken pox fade. Life goes on. “You’ll get over it” coming from Dad also seems like an endorsement of my inherent capability. A sort of “you can do it” German style. An expectation that you, indeed, can move past that skinned knee and make the day worthwhile. Perhaps Dad could have written my favorite parenting book: The Blessing of the Skinned Knee.

Well, Sara was right. I can write this list–and I do love a list! I could probably write another one, too. Perhaps next Father’s Day. But for now, Happy Father’s Day, Dad! I am, as always, honored to be your kid.

Some glorious friends of ours gave us an impromptu weekend at their huge cottage on Lake Michigan last weekend. It was just what we needed to kick off the summer and to get my head out of chemo-think. Here are a few photos for those of you not on facebook (ahem…Mom).

We are back to reality now. I had a long meeting at school yesterday with chemo in the afternoon. Today the familiar stinging eyes and dry mouth are here. Tomorrow will be more with some added exhaustion and Friday will be the nadir. We’re moving ahead just fine, though, and are in good spirits. I think we’ll be working on making the weekends count all summer long!

Mark and I just returned from the doctor. My CAT scans showed no mets to the bones (yay!), liver ablated (yay!) and lung nodules getting a little too skippy off of the chemotherapy (boo!). So, back on Gemzar for me. I’ll do two weeks on and one week off for two cycles to see if they get back in line. They are still very small, but we still need to show them who’s boss.

I feel fine about this. Gemzar is familiar territory. I won’t be going back on the Avastin just yet since that’s the one that was giving me high blood pressure and threatening my kidneys. Perhaps after more of a rest from it, we’ll re-integrate it into the regimen.

So, no summer off chemo for me. Oh well. At least I can lie by the pool if I’m tired and sip an iced latte. Not such a bad deal.