Clarify (& Justify?)

Cancer isn’t fun. It’s rotten, mean and sneaky.

Cancer may seem horrible – and it is on many levels – but in one of those insane ironies it’s also been an odd kind of blessing. It’s forced us to see how lucky we have been (and continue to be) in our lives. Things are not dire for us – we are among the luckiest people in the world. We have a good home, indoor plumbing, hot water, all the food we could want and things to amuse us (like knitting!) We also have each other – and the fact that Gerry & I found each other is sort of a minor miracle. But we did, and we’re lucky.

When my brother died a few years ago at age 44 I said to his wife that it was tragic, but not a tragedy. The tragedy would have been if he hadn’t met her, and they hadn’t had 14 good years together. We don’t know how this will end, but we’re hopeful that by preparing for the worst & hoping for the best, we will find the best in both of us!

If we didn’t have a good attitude and a good sense of humor
(which, thank heaven, we both have!) we’d be totally lost now. Our jokes and laughter are like the white stones we can follow through this dark and scary forest of cancer back to some kind of normalcy.

It’s good to note that Gerry is LIGHT YEARS better than he was in March when we had no idea what he had. For a few years Gerry has also suffered with ulceritic colitis, which tends to rear it’s ugly head every now and then, sporadically. At the onset of this disease Gerry was in the middle of a several-months-long bout of UC, and he was so exhausted, tired & in so much pain that we both felt rather hopeless. This was BEFORE we knew he had cancer. We just knew SOMETHING was seriously wrong.

One of the drug therapies that’s been helpful for MM is a combination of Deximethezone & Thalidimde. This cocktail has not only been helpful with the MM, it’s also been working wonders with his ulceritic colitis. A colonoscopy in April showed how well it has been working, and he’s better in that regard than he’s been in a LONG time!

Not being able to get up and down stairs quickly married to ulceritic colitis is a very hard thing to live with and creates – quite often – episodes that are painfully embarassing as well as just plain painful.

Right now Gerry’s trying to wrap his mind around the fact that he’s lost so much of his bone density and some of the changes are irreversible (he was never a tall man, but he’s 3″ shorter than he was in February.) I’m trying to keep him focused on FUTURE – but he has to come to terms with what he feels he’s lost so far before he can move ahead.

Part of the focus on the future – as I tried to say in my last blog post (I think I was a bit incoherent) – is going ahead with dividing our kitchen into a kitchen / bathroom & laundry area. As I wrote earlier, I have very mixed feelings about this. Just who do I think I am, going ahead with this? Even though it’s going to be a relatively inexpensive redo (as these things go), shouldn’t we put this money entirely into recovery-related expenses?

This email came in today, and I’m thinking I should address this here as it’s likely that others feel the same way:

I was just sent a link to your regular blog where you discuss remodeling your kitchen and bath.

I was under the impression that your financial needs were dire in relation to your husband’s condition. I must say that I am now very uncomfortable at having made a donation to you under the circumstances.

I can definitely understand these feelings. I haven’t hidden anything, I’ve been very up front with what we’re going through now (and all of the other little incidentals of our life, like the move, the kids settling in, the effect of this on my work and, of course, adding the bathroom…)

But the email hurt a bit – the sense was that the author thought we are trying to get away with something, and that’s the most stinging thing of all. Actually, it didn’t sting, it felt like a sock in the gut. Of course I returned her donation immediately.

I’m still sorting out my feelings on this whole chapter in our lives. My gratitude to all of you who have sent a kind note, a small gift, a donation, or a story of your own battle with cancer is boundless. I’m not being as quick as I’d like to be with the personal notes to those of you who have written, and I apologize for that. Life is – well, busy. It is for everyone.

But here’s what I wrote back to the emailer. Perhaps it will be helpful to those of you who may have the same concern that she had:

We have no bathroom on the first floor, which makes Gerry a virtual prisoner of the second floor of our home on many days. The small amount of money for doing this (very small) renovation has been set aside since we purchased our home this past February. If you have read my blog you will see that I, too, have mixed feelings about going ahead with this at this time.

With Gerry’s condition it’s practically impossible for him to walk up and down stairs. The renovation is more along the lines of making that portion of our home handicapped-friendly than a cosmetic change because we want a new kitchen. We don’t – we’d be more than happy to just keep things the way they are. But then we wouldn’t see Gerry most of the time, and he wouldn’t see anyone unless they came upstairs to visit him.

Our kitchen area is large, and rather unfinished. We can divide the space and add a toilet & bring the laundry up from the basement. This will allow Gerry to be part of the family and stay on the ground floor during the day, and I will have less running up and down stairs as I manage all of the other tasks I need to do.

Gerry hasn’t worked since Feb due to his illness. I’ve canceled several of my teaching engagements and have canceled some writing & book work in order to take care of him and drive him to doctor’s appointments (a full time job.) We’re living on savings, which have pretty much become depleted.

We have been told by the University of Minnesota and the Mayo clinic that Gerry will most likely die from this disease, probab
ly in 1-3 years. It is likely that he will need constant care during much of that time.

We prefer to hold out more hope that in the next few years there will be the same kind of strides in Multiple Myeloma as there has been in other forms of cancer, and that Gerry will be in the 10% of MM patients who beat the odds. At any rate, we’d like to spend the next 1-3 years with the family together as much as possible, and with Gerry as comfortable and stress-free as possible.

So, in case you were wondering, this is why we’re adding a bathroom to the ground floor. If anyone feels cheated in any way – that our circumstances aren’t as ‘dire’ as you thought they were – please let me know and I will be MORE than happy to fully refund anything we’ve received from you.

I’m off now to Comotown, where I’m taking the kids to ride the rides with friends.

If you enjoyed this post, make sure you subscribe to my RSS feed!