My wife, Pattie, is an amazing caregiver.  Smart and compassionate, her own experiences as a cancer survivor prepared her to intuitively understand what I need and when.

Pattie also has had a lot of practice as a caregiver; she’s been watching over me for over seven years.

I was battling symptoms for years before my multiple myeloma was diag­nosed in April of 2007. The good news was that an MRI finally revealed what a half dozen doctors couldn’t figure out. We finally knew why my hands would shake when I wrote, why my right shoulder and ribs were in so much pain and never seemed to heal, and why some days I couldn’t walk up a flight of stairs.

Pattie was there for me when I developed a pulmonary embolism the following summer, most likely due to my therapy. She helped me get past months of non-stop nausea following my stem cell transplant. She also helped me deal with the disappointment I felt when we learned the transplant hadn’t helped.

Pattie held my hand before and after reconstructive surgery to re­pair my left ear after doctors discovered that I’d developed a secondary cancer – melanoma – after five years of non-stop myeloma therapy. A year later, she helped me get up and get going when my right hip was replaced after the joint was ravaged beyond re­pair by years of taking dexamethasone ^[1] (Decadron). Periodic radiation therapy and three relapses —  Pattie has helped me through it all.

But our myeloma journey together has taken its toll on her. I’ve watched Pattie change over the years. She’s hardened and become unsettled and stressed — do much so, I believe it’s started negatively affecting her health. It doesn’t help that she’s working in a job she doesn’t like just so we can keep her medical in­sur­ance.

Cancer isn’t fair. It’s not fair to be diagnosed with multiple myeloma. It’s also not fair to be the one re­spon­si­ble for someone’s care for so long.

Pattie and I have a caring and open relationship; we’re best friends. Yet, over the past few years, I’ve been trying to insulate her from some of my myeloma-related news. Yet it isn’t easy, given all the things I do related to multiple myeloma. In addition, most of my friends are myeloma patients, caregivers, or people in related medical fields. There’s no escape!

That’s fine for me — it’s my choice and my cancer. But I believe if Pattie had her way, the only time we’d talk about multiple myeloma would be after I see my specialist or get important test results.

That’s my dilemma: striking a balance between being open and honest, while trying to protect her from be­ing constantly reminded that I’m dying.

It isn’t easy. We talk about everything. When a friend dies, we talk about it. But I can tell it’s tearing her apart; every time a myeloma friend dies, it’s a vivid reminder that I could be next.

For so long, it was us against the world. Since we never had kids, Pattie and I never developed a lot of friend­ships in the conventional sense. Making matters worse, Pattie left friends and family in Wisconsin to move to Tampa with me so my damaged bones wouldn’t ache in the cold. For five years we lived and worked near her sister, nephews, and grandkids on Florida’s Gulf Coast. Even though everyone was busy with their own lives, Pattie felt like she had someone to help if things got tough.

Now we’ve moved across Florida, leaving her feeling exposed and without a support system.

It’s funny how you don’t think about things like this when making life decisions. I thought we had taken every­thing into account before our big move.

Caregivers need two different kinds of support: emotional and practical (such as help with day-to-day re­spon­si­bil­i­ties). At this point, I wish that Pattie would have cultivated more friendships with support group members and others who are going through what she is.

But I get why she hasn’t. I get why so many patients and caregivers don’t join support groups. It reminds them that they – or someone they love – are sick.

I’m confident that we’ll get things worked out. Still, I can’t help thinking about others like us. I’m healthy enough to be her companion and help around the house. But what about those who aren’t so fortunate? What about those with a spouse or significant other who isn’t physically or emotionally able to help?

I welcome your comments and suggestions, both for Pattie and other caregivers who feel overextended and disconnected. Maybe together we can help caregivers feel like they aren’t alone.

Feel good and keep smiling!