We’ve had our field trip to Rochester to the Mayo clinic (twice) and have met with a few people. Now we wait.
He has a lot of pain, which makes everything much harder. One of the hardest things is convincing him to TAKE HIS PAIN MEDICATION, but slowly we’re getting that message through. He’s stoic, our Gerry.
(We just got a scrip for Oxi, god help us if he starts spouting Rush-isms…)
The bad news is that even though he’s responding well, he’s already in stage 3 Multiple Myeloma. These stage things aren’t used that much anymore, actually, because they’re so inexact. Gerry’s frustrated because they keep telling him his numbers are good, and he feels like crap.
The worse news is that our second opinion at Mayo was somewhat worse than our first opinion at U of M. So much for second opinions. Remember this the next time you say you want a second opinion.
We met with a BMT (bone marrow transplant) Fellow at the Mayo clinic yesterday. He was very kind, very informative and easy to understand – thank heaven. And sympathetic. But no matter how sympathetic, there’s not much you can do to sugar coat the phrase, “terminal illness”
Which is why I love Elizabeth Edwards – “LIFE is a terminal illness.”
The 3 year life expectancy time frame we were given before was reduced to 2 years in this conversation – but they promise nothing, and guarantee nothing. It’s life, not a radial tire.
The meeting was sober, but not somber. When Dr. Haman came in I asked if we should get out our noisemakers – she laughed. I babbled about my knitting until I remembered that we weren’t there to discuss yarn. We were there to discuss how much time a bone marrow transplant may add to Gerry’s life.
Who knows – he may respond miraculously to the treatment and we’ll be dancing at Hannah’s wedding – but the feeling we had from both doctors was more subdued.
They asked, “What are you looking for in this treatment?”
I answered, “A 50th wedding anniversary.”
Realistically, though, we’re looking for a little hope. And a little more time.
Heads up everyone – Never, ever, complain about growing old in front of me.
Gerry and I are not being pessimistic, just realistic. And we are hopeful.
This is how we live our lives – we’re frugal, pragmatic and realistic. We have a great marriage and a lot of fun together, but ultimately we see things as they are, and try to deal with them gracefully.
We can’t change who we are right now just because it might make it easier to tell folks “We’re SURE he’s going to be in the 10% who have more than 3 years! We refuse to believe otherwise! [Not.]
We are who we are. Neither of us has ever been a fan of the ‘failure is not an option’ frame of mind. Humanity is our only option, and humanity = failure sometimes.
Faking something at this point would just be – very sad – and not what we love best in each other.
Mayo wants to do a stem cell transplant on Gerry sooner rather than later – they’re shooting for very early August so that when he’s in the deepest throes of recovery and needs me down in Rochester, MN 24/7, the kids will be in New Jersey visiting friends.
This is amazingly hard – I never knew anything could be so hard – and if it’s hard for me, I can only imagine how difficult it is for Gerry. Dealing with this is hard – asking for help is hard – keeping the family running in a relatively normal way is very hard.
It still doesn’t seem to have sunk in fully for either of us. I think we have to take small bites of this big meal to fully comprehend. We’ll have a brief moment when it will dawn on one of us that Gerry probably won’t see Maxie playing ball in a few years, may not meet Hannah’s first date, won’t be there when I finally run for president (oops, I didn’t mean to let that slip out …)
Small bites. Many, many small bites. And we both have the tooth marks to prove it.
A group of dear friends down in Georgia (former students and yarn shop owners – just amazing folks) are putting together a fund to help us cover the expenses that are adding up because – well, because neither Gerry nor I have been able to win as much bread as we have been needing. He’s been out of commission, and I’ve b
een spending a lot of time taking care of him.
I’ll post information on this as soon as they have their website up. Man does this feel odd.
I’ll also have a pattern for the Emmy Dress (which I’m calling Red Carpet Convertible) up and available soon. It will be available for a donation – you can pay what you want for it – and that way I won’t feel quite so begg-y.
For those who are interested, I have acquired a PO box so you can correspond with me via snail mail. I don’t promise to answer, but I’ll try. Chocolate is good. Maybe a chocolate Buddha?
Here’s the info:
Annie Modesitt [aka Landy]
1043 Grand Ave
PO Box 117
St. Paul, MN 55105
Finally, If any of you have written and I haven’t gotten back to you – please forgive me! I read every email – many times – and they make me very happy and weepy. Life here is good, very good, but you guys are better.
We’re definitely in the right place, though – this is the hotbed of Multiple Myeloma research, and the Mayo does 300+ stem cell transplants a year.
We’re in very good hands. In spite of all of the crap, I think we still feel very lucky.
Okay, maybe not VERY lucky. I’m pushing it.
But I know we’d rather do this together.