Tag Archives: cancer

“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.

Falling Leaves, and a WINNER!

The winner of the book, Pure Wool: A Guide to Using Single-Breed Yarns, is cinderellen (and I didn’t even look at her blog link before I chose her, but apparently she likes cycling and knitting – she must be great!)

I hope she enjoys the book, and I hope the rest of you will check it out.  I swear, it’s one of the nicest, clearest explanations on different fibers that I’ve seen in a while – presented VERY simply with useful patterns.  I think Pure Wool would make a tremendous holiday gift (just sayin…)

FALL

I love this time of year, not least of all because my SOLD OUT retreat is happening this weekend (I’m keeping it very small to match my reduced energy levels, but it’s still 13 folks!  Do I feel some Halloween related scary 13-is-unlucky vibe happening?)

Stuff is happening here chez Modeknit – good and bad – just like life is supposed to be (and I seldom used the word “supposed”)

Gerry’s cancer is definitely back, Revlimid ($4000 per month – yikes!) will be started soon and we’re both VERY hopeful that we’ll beat this beast back yet again.  After all, we have enough stem cells for TWO more transplants, we know what we’re facing, and we’re a good three years beyond the original prognosis.  Every day is, indeed, a gift.

As Atticus fails, Ginger spends more time with him, he’s becoming a very empathetic kitty.

Atticus, too, is fighting the cancer beast, but his journey is probably going to be ending soon. It feels very, very odd to hold the life of a creature I love so much in my hands. I know we could ease him into a pain-free place today if we wanted, but I ALSO know how damned happy he is, how he still has moments when he frolics like a puppy, and his tail is constantly wagging.

Everyone says, “You’ll know when it’s time.” but so far we haven’t known.  Which may mean it’s not yet time?

Gerry Update

A lot of folks at TNNA asked about Gerry, and I figure it’s time for a short update.

Overall, things are very good.  When we consider that 5 years ago we were told that he had 1-2 years, things are exceptional!

Hannah & Gerry, 2012

Gerry’s doing okay – he has good days and bad days.  This spring he had a number of good days all strung together, which was wonderful!

This Summer’s been hard for him so far – me being away in Ohio for 2 weeks with Hannah was exceptionally hard for him – so we’re still recovering from that…

He was in what they called a ‘good partial remission’ because, evidently NO ONE goes into remission from this Multiple Myeloma. 

Hannah & Gerry, 1997

As of a few months ago, though, he’s officially relapsed.  Which was exactly what they told us would happen, but it’s happening 3-4 years later than they projected, so that’s very good.

As of his last visit at Mayo this past month his numbers were holding steady and even improved from the previous checkup (yay!)

If/when he does continue to decline, we have several strategies that the doctors are working on.  The great thing about this cancer, Multiple Myeloma, is that EVERY day seems to bring new breakthroughs, and new ways of dealing with the disease.  Gerry is living proof of that.

We have enough stem cells harvested (from 2007) to allow him to have two more stem cell transplants, but that’s far down the road, and a road that none of us want to go down (especially Gerry!) 

It’s a miraculous procedure, but also incredibly hard, painful, and exhausting.

So that’s what’s up with Gerry!

IMG_0095

Best Friends

Atticus

Those of you who know me know how much I love my dog.

Atticus is the best dog I’ve ever known.  He’s so smart, kind, gentle and easy.  He’s very empathetic (he seems to sense when any of us are sad, or having a lot of pain) and – above all – he’s a member of the family.

Atticus is very ill.  He started limping 2 weeks ago, and a visit to our vet left us with the best-guess diagnosis of arthritis and a prescription for a pain drug.

A week later his limp was worse, and when I ran my hands over his shoulders one morning, the right one felt much different than the left.  We took him to the vet again, and this time, after a few xrays and a pretty thorough exam, she said she feels that the loss of muscle mass in his shoulder is an indication that he has something called a Nerve Sheath Tumor.

Here’s what she wrote (she’s so wonderful, she emails me every few days to check on him, totally understanding how difficult the telephone is for me)

The … tumor … is something called a nerve sheath tumor. It can be very difficult to diagnose without an MRI or CT scan of the shoulder and elbow. It is a soft tissue tumor so it does not usually show up on an x-ray. It is usually fairly deep in the tissue and unless it gets very large it is difficult to feel on a physical exam. As these tumors tend to wrap around nerves in the neck/shoulder/elbow they can cause a lot of pain.

So every day Atticus seems a bit more limpy, a bit more in pain.  He’s taking several different pain meds (ironically, one of them is what I was prescribed for fibromyalgia) and his spirits are very good.  We want his quality of life to be good, his pain to be low, and his happiness is the most important thing of all.

Right now he’s just so happy to see us – any of us – he loves us so much.  He also loves getting his pills because we wrap them in cheese, so he feels like he’s won the lottery!

Gerry

A Couple of Irish Laddies

I joked recently that it’s dangerous to be loved by me, because that seems to equal a diagnosis of cancer.  Okay, so it’s not funny, but it sure feels true some days.

Gerry’s had a rough couple of months. He’s doing very well in many ways, but the thing about Gerry is he has so much pride that he ALWAYS gets it together when seeing other folks.  But his pain levels have been high, and many days he gets up to see the kids off to school, then goes back to bed and sleeps until they arrive home.

As the weather warms and the sun is out more, I can see him coming back to life.  Warmer is easier for him (as long as it’s not too hot) and he’s dedicated this Summer to growing some decent grass in our yard.  We’ve also decided we’ll try a vegetable garden, but that’s another story…

We went down to the Mayo Clinic yesterday for tests, and to see his doc there (who we LOVE!) and she confirmed what I’d been thinking.  Officially, Gerry’s had a relapse.

Now, there are relapses, and there are RELAPSES.  This is more a movement in the direction we don’t want than a full-out health fail, but it’s notable.  I had a sense of this because of Gerry’s pain levels and exhaustion, but even though we’ve been at this five years, every day STILL seems like a new adventure.

Five years ago we were entering the diagnosis / care strategy phase, we were on the brink of being told that Gerry had one, maybe two years ahead of him, and his stem cell transplant wasn’t even considered yet.

So MUCH has happened since then, the most important being TIME.  Five years have passed, five really wonderful years, and we’re pulling for five, ten, fifteen more.  I’m greedy, I’ll take every day we can get.

So, I apologize for taking so long since my last post, and for not posting about knitting (which I really have to write about again one of these years…)

Some days it’s just really hard to try to put this into words for a blog, but it feels false and shallow to NOT address it.

Life’s been – busy – and also very rich and full.  I continue to think that we’re the luckiest folks in the world.

History On Two Needles

In other, most EXCITING news, I now have a tech editor for History on Two Needles and she’s running through the patterns like a rock star!

Huzzah, Kate, author of Beyond Knit & Purl, I am very lucky to have her on my team!!  Thank you, Cooperative Press!

I spent 6 hours reworking one pattern today, putting her suggestions into effect and creating a better schematic & chart, and I think we really have a good chance of getting this thing finished and printed by the end of this year.