An Open Letter to Mrs. Brokaw

Dear Mrs. Brokaw,

Obviously I don’t know you, we’ve never met, although I – like many Americans – feel that I know your husband. My own husband’s father was a stagehand at NBC for many years, and always mentioned what a mensch your husband was. Stage hands learn pretty fast who is a good guy, and who’s a bit of a prima donna.

So apparently this past Summer you joined the club I joined 7 years ago, spouses of folks with Multiple Myeloma. We also share the fact that our husbands are being treated at the Mayo Clinic, which I consider a very good club to be in, indeed.

You’re in the best hands in the world. When Gerry, my husband, was diagnosed his prognosis was poor, but every year, with new drugs and improved treatment options, his prognosis gets a little better.

Life has never been as precious to us as it as these past few years. We feel amazingly lucky. Excellent work is being done all over the world on this disease, but we’re biased toward the Mayo as we live in Minnesota.

I’m not going to say, “Cancer is a gift” – because it’s not. This is a painful, frightening disease – I hope your husband hasn’t had too much bone damage and subsequent pain.

But what this disease HAS given to our family is a golden opportunity to realize exactly how precious we are to each other, and how wonderful each day we share is. Often at the Mayo we would remark that it felt as though we were on a second honeymoon, except this time with chemo.

You’re not alone. I know it’s presumptive of me to write this note, and by this time you’ve realized everything that I could ever tell you. Know that there are many spouses next to you, standing by your side, all of us loving our husbands and wives, all of us willing to share some strength or just let you know that a prognosis can change for the better, especially with Multiple Myeloma.

All the best wishes for treating this terrible cancer as a chronic condition!

Best,
Annie Modesitt

“I feel like I’m lying…”

Last week was one of the monthly meetings of Gerry’s Stillwater Multiple Myeloma Support Group.

This group has become very important in our lives, the folks involved are lovely – kind, smart, hopeful but not smarmy, a great group to surround ourselves with. We feel fortunate to be part of them.

In the last meeting one member mentioned that he’d been told over 5 years ago that he had ‘probably 2 years’ – very similar to Gerry’s own initial prognosis. He spoke of feeling as if he were “lying” sometimes because he’s outlived the time period he’d told so many folks of when he was first diagnosed.

I feel the same way. Gerry’s here – he’s HERE – I want to go shout it from the rooftops every day because we are so thrilled that HE IS HERE!

But it’s different from our initial expectations.

Folks often stop me and ask about Gerry, or they email; it’s so kind of them. Each time I say some version of the same thing,

“Gerry’s doing well, he’s active, his cancer came back last Summer but we’re handling it with a new drug, and have enough stem cells harvested for 2 more transplants if that’s necessary.”

And all that’s true. But because we’re dealing with the unknown, it also feels like I’m pretending to tell the future, and that feels awkward.

If I were to speak from fear, I’d say, “I’m afraid he won’t be here long.”
If I were to speak from hope, I’d say, “He’s here, and he will be for a long time!”
But between fear and hope is the reality, and many days I don’t know what that is.

Gerry and I at dinner

Gerry and Annie at dinner

Last Summer/Fall Gerry began experiencing some of his initial symptoms again, and his visits to the Mayo Clinic each month weren’t as sunny and optimistic as they’d been in the past.

We both knew the truth, but didn’t know what they meant. It was like watching a very well made mystery, knowing there was going to be a twist, but having NO idea what that twist would be, or where it would lead.

And, of course, EVERY human lives this way. In our case it’s heightened because the immediacy of cancer is different from general, run-of-the-mill ‘growing old’

Every time I hear of a friend’s passing – or, more to the point, hear of a friend’s spouse passing – I feel like some kind of charlatan. I feel like I should apologize for still having a husband (which I know is insane!) I feel guilty.

My husband’s still here, and wait – wasn’t he supposed to be gone? Didn’t we tell everyone six years ago that by this time Gerry would be a picture in an album and not flesh and blood?

As our friend in the MM Support group said, “I feel like I’m lying…”

How is Gerry right now?

Because I’m a Virgo, I can best answer that in a list;

1. He’s here. After the MM came back, his oncologist put him on Revlimid ($9000/month, thank heaven for the Leukemia & Lymphoma Society and the Chronic Disease Fund, who help us with the co-pay!)

Max, Andy & Gerry visiting Carleton

Max, Andy & Gerry visiting Carleton

2. He’s older. And I don’t mean simply 6 years older than he was at diagnosis, he feels more like 26 years older than his 46-year old self. He has the energy levels, strength and vitality of someone in their 70’s (which, these days, isn’t bad at all!)

3. He’s tired. He needs to sleep a lot, but he derives great satisfaction from being an active contributor to family life; he cooks dinner most nights, he does some simple gardening (raking is always good exercise!); he drives the kids around (although I can tell he doesn’t like long drives) and keeps track of our tax information, medical stuff, that kind of family paperwork.

And he takes care of ME! There are days during a fibromyalgia flare up that I feel incapacitated; he helps me get through the rough times, and I am very grateful!

4. He hurts. He has a great deal of pain, it’s constant and even in his sleep I can tell that there are moments of agony. Aside from the Revlimid/Deximethisone cocktail and a probiotic for his digestion, the only medicine Gerry takes on a regular basis is his very strong pain medication.

Gerry & his tall daughter visiting Earlham

Gerry confused by his tall daughter. visiting Earlham

I can tell it bothers him to be ‘on’ oxy and hydro, but we’ve passed the point where he feels guilty about taking them (thank heaven!) and we all understand that to miss a dose is inviting the pain to rise to such a level that it is MUCH harder to quell.

5. He’s Gerry. He’s funny and loving and a pretty wonderful guy. Because of the pain he tends to be more short-tempered than he was before, but given his general sweetness and easy-going nature, it  means he’s STILL nicer than the average human, and we’re so lucky to have him!

This is what the face of Cancer Survival – Multiple Myeloma Survival – looks from one family’s viewpoint.

Ginger the fat cat & Gerry's #1 fan!

Ginger the cat, Gerry’s biggest fan – literally.

The stress of living with the unknown comes and goes, we deal with it, and we try to be as ‘normal’ as we can. We try not to think of every holiday, birthday, event as, “perhaps the last…” because that’s just too emotionally draining and a tad dramatic.

What we DO do is to set goals for ourselves.

We didn’t think Gerry’d be celebrating Max’s Bar Mitzvah, but he did. Next up is Hannah’s graduation from high school, set for June 2014, and all signs point to Gerry’s attendance.

Every day really IS a gift.

Giving Joy

I made a documentary! It’s on the subject of Care Giving, and it’s called Giving Joy.

This summer I was accepted into a program at our local public access TV network (SPNN) called DocU, where we spent 15 weeks learning how to plan, shoot, edit and craft a short, 10 minute documentary.

It’s in a competition right now, and if you’d care to vote for it, I’d be thrilled!

I loved this process. It was exhilarating and exciting, and I feel like I’ve had a door opened into a whole new world.

No surprise, my favorite part was the planning and the editing. The actual shooting was fun, but physically a bit rough some days.

Which brings me to a different subject.

I know I’ve been low profile this Summer. I feel that I’m hermitizing myself — trying not to be in public more than I need to — and of course, that’s not healthy.

That’s one reason the DocU program was so great this Summer,
it was a place I needed to be once a week to see other people
(and it was a reason to get out into the world for shooting).

I’d hesitated to write this, but I feel that I’m slowly disappearing in some ways, and I wanted to explain that it’s not permanent. I just need to figure out how to get on top of the continuing pain from my Fibromyalgia, which wreaks havoc both physically and emotionally.

I felt like a fraud some days when making my documentary, because my health’s been so iffy this Summer that there were days that Gerry was the caregiver, and I was the patient!  I don’t know exactly what is changing, but I do know that my pain levels are increasing and I don’t feel able to control them with biking alone, as I have for 3 years.

I’ve been experimenting with different ride lengths, riding at different times of day, in different temperatures, and it seems that riding between 10-20 miles on a 70-85F degree day is best for me if I want to try to control my pain levels (Yesterday I rode 30 miles, and discovered that it might be a bit far for me).

But bike riding’s not doing the trick it has  for the past few years, I’ve been shaking.

In fact, a few times this Summer I’ve gotten the ‘shakes’ so badly while riding I got off the bike and rested a bit until my hands calmed down. I’ve been ‘shaking’ in various ways for years, usually while I’m yawning or sneezing, but now it’s spilled into other moments, too, and has spread to beyond my hands.

I talked about this shaking with my rheumatologist, and a few years ago all kinds of tests were done (brain scans, other cool things) but there seemed to be no indication of Parkinsons (with which my Aunt Wanda suffered for many years).

Two weekends ago I began shaking while with a friend and our daughters in public, and aside from being humiliating, it was a bit terrifying.

So new appointments are being made, perhaps new meds will be tried. I love my bike, but it’s not doing for me what I have needed for so long (but I’ll never give it up!)

As I write this I realize how damned lucky I truly am! I have a source of income which allows me to work at my own pace when I feel strong, and to rest when I feel that’s necessary. I have a few good designs coming out in the next few weeks (more blogging about them in the next few days!) and, of course, there’s always History on Two Needles (more news about THAT coming up, too!)

I’ve cut down on my teaching because, well, I tire easily and I shake more when I’m exhausted. That doesn’t mean I’m NOT teaching (I’ll be at Interweave Knit Lab in San Mateo in early Nov 1-4) but I’ve definitely cut down on the extended gig trips that I feel may have contributed to my initial Fibromyalgia.