The past few weeks have been a very special time. Being able to be alone with Gerry – well, except for the doctors & nurses doing intimate things with G that I won’t even go into… – has been a tremendous experience. We’ve had such a good time, which isn’t how Cancer is supposed to be, right?
We’ve been sight seeing – taking odd drives to figure out exactly WHAT those smokestacks in the distance are – and I’ve been going on daily walks with Atticus around the church at St. Mary’s Hospital. It’s lovely.
We’ve enjoyed each other’s company, and after 14 years of marriage we both feel pretty lucky that it’s been such a great few weeks. We laugh all the time, at the stupidest things, and have a good time with just about everything we do. As Zero Day approaches we’ve been getting a bit more tense, but nothing we can’t handle.
And now, tomorrow – er, today – is Zero Day. This is the day of the transplant, which is supposed to be anticlimactic after all of the odd things that have transpired to this point. Every day after this is numbered – Zero Day Plus One, Zero Day Plus Two, etc.
At Day Plus One Hundred we’re supposed to come back to Mayo for follow up. The nurse practitioner told us Thursday that when someone lives as close as we do – 81 miles from Mayo to our house in St. Paul – they tend to let them head home sooner than someone who lives halfway around the world.
She actually used the words, “Day Plus Fifteen” when making an educated guess on when Gerry might be able to go home.
Because the transplant is today – the last day of August – counting the days for the first month will be quite easy. Day Plus 1 is Sept 1, Day Plus 15 is Sept 15.
And that’s the day I’m returning from [gleam] France.
I can’t sleep. I feel like I’m preparing for the D-Day invasion. My sister in law made me an adorable peaked cap, decorated with the stars and scrambled eggs of a General, with “Organization” emblazoned across the front. I am the Organizational General.
Everything, though, seems to be coming together beautifully;
- Gerry had his second day of chemo yesterday and so far so good (he’s not supposed to feel the effects for 5 days or so – when I’ll be in [gleam] France.)
- Gerry’s mom and sister arrived Wednesday without a hitch
- The kids arrived and they’re beautiful, healthy, happy & lice free!
- We have all of his meds sorted out for his mom in a compartmentalized container
- We’re getting the keeping the room practically sterile thing down
- I spoke to the St. Paul City Electrical Inspector and she was a HUMAN BEING (yay!)
- The bathroom floor is laid, it’s lovely
- The kitchen floor should be down on Friday
Oh, and I’m leaving on Sunday evening for [gleam] France. Bonjour! AND the Inn I’m staying at has Wifi. Booyah.
Is doing really well. He’s still basking in the 13,000,000 plus stem cell harvest (I’m going to have a T shirt made up for him touting this amazing feat) and he wanted to walk to the clinic for his second day of chemo – except we were running late. Darn.
So as long as he feels like it, we’ll walk.
Gerry told me yesterday that the night before – the night when he couldn’t get to sleep until 4:00 am – he seriously thought about death for the first time. We didn’t talk about it in depth – but with all of our joking about “Hey, the service here is terrible! I don’t have much time, you know!” this was the first time the hooded one entered the room for anything but a chuckle (or a game of Battleship…)
The 5:45 appointment with surgery for his central line went very smoothly. The line is in, I’ve changed the dressing once (very nicely – I
wanted the video TWICE before I did it) and it seems to be healing beautifully. The chemo nurse yesterday said it didn’t look like he’d just had the line put in the day before.
Our amazing Gerry – everything his body’s been asked to do has been done magnificently. YAY!
After his chemo yesterday, which was a bit delayed, we strolled home and he felt really good. Before the chemo I forgot to pick up his drugs downstairs, then when we arrived at the chemo station we were generally gestured toward a room without a lot of guidance.
It was our luck of the draw that the next two folks we ran into were a tech from a different floor who couldn’t really help us, and a nurses aid who told us in NO uncertain terms that NO, we DIDN’T have to wash our hands before we entered Gerry’s room (all the signs said, WASH YOUR HANDS, so we did.)
The upshot was that when we finally arrived in the chemo room we felt tense, confused, and as if we’d been scolded. That was when I realized I had forgotten to pick up the drugs, so I rushed down to the pharmacy only to realize I didn’t have my wallet.
So back up to the room, then back down to the pharmacy, paid for the drugs (I was so stressed I wasn’t nice to the pharmacist, I have to go apologize today…) and then back up to Gerry’s room to have the nurse go over the drugs and chat with us long enough to calm us down.
After that it was a breeze. The chemo was put in through Gerry’s central line, he felt great, the nurses were so wonderful (as usual here at Mayo) and we’re getting so used to feeling lucky we don’t know what we’ll do when we have to go back to feeling like ‘normal people.’
It’s a crappy way to feel special, but better to embrace the positive aspect of this whole adventure, ne c’est pas? Hey, that’s FRENCH!
So little to mention, I’m ashamed to say. I’ve missed several submission deadlines (oh, well!) I’ve done NO work on any book proposals (oh, well!) and I’ve barely been able to get any knitting done at ALL (damn!)
I’m planning on getting a lot done on the flights from MN to London, then from London to [gleam] France, but I need to double and triple check the needle allowances on international flights.
Since I’m working on a mitered project I can use dpn needles, so I may just bring them and pack EVERYTHING else in my luggage just to be safe. They’re slower than my long metal needles, but I’d hate to LOSE my long, metal needles!
Tired, but good. Lots of work yet to be done, much more behind me. When I stop and think about the work it overwhelms me, so instead I just make sure the next few days are planned out and put one foot in front of the other.
Today my sister in law and I drove up to St. Paul to clean the house and pick up the kids. The house is FAR from pristine, but it’s light years better than it was! Our 10+ year old vacuum cleaner, which was a cheapo stopgap when we bought it and has never been great, was just too lightweight for the massive task.
So I stopped at Sears on the way home and finally got myself a halfway decent true HEPA vacuum.
I figure this is the time to try to get the house as clean as possible – for me, for Gerry, and for the kids and the kind folks who will be staying with them over the next two weeks! His immune system will require a better vacuum – so why put it off?
We arrived with our new vacuum and face masks and cleaned like there was no tomorrow. Gayle worked so hard – so did I – and at the end of 3 hours 90% of the dust was gone, things were in a better working order, and we felt quite pleased with ourselves. Saturday Gayle, the kids and I will drive up and I’ll get them settled in before I leave Sunday afternoon for – oh, you know…
Gerry mentioned the other day I haven’t been talking much about France – haven’t really mentioned it at all except in organizational terms – so I bought a guidebook for Languedoc and I’m trying to drum up the enthusiasm that this trip deserves!
My heart is wrenched, but my soul is looking forward to this.
People have been VERY kind about writing to say to be sure to take care of myself , the caretaker, and that’s lovely of them. It’s nice that caretakers get consideration, it means a lot.
I knew this would be a lot of work, but I hadn’t realized how MUCH work.
Every single minute is devoted to either lifting, carrrying, arranging, cleaning, phoning, picking up, dropping off – it is very much like having a baby or toddler (a very large toddler) who has definite opinions about certain things, and also a certain amount of pride.
Gerry’s been amazing – just wonderful – and I am very lucky. I can imagine how easily this could disintigrate into something very unpleasant if either caregiver or care-ee lacked respect for what the other was going through.
Gerry appreciates all that I’m doing, and that means so much. On my end, I never lose sight of how hard and odd this whole thing is for Gerry – who felt pretty darned good just 6 months ago.
But even as great as Gerry’s been, because he IS an adult h
uman, I can’t just steamroller him and push him along. He has pride and an ego (as we all do) and he needs to be able to make as many decisions for himself as he can. This would be so easy if it were a dictatorship – as long as I were the dictator.
This means sometimes in addition to all the other stuff I find myself cajoling, wheedling, and pulling him toward a decision or choice. Not that he’s being recalcitrant, just HUMAN. And I know – in my heart of hearts – that I’d be 1000% times more difficult.
Actually, I have been 1000% more difficult, so Gerry has a long way to go before I have anything to complain about!
So here I sit at 4:01. The wake up call is scheduled for 4:45, so it’s hardly worth going back to bed. I couldn’t sleep – worry, tension, weight of planning – there’s only so much room in the bed (and Atticus is taking up a great deal of it.)
Hannah grew inches, I swear! She’s so beautiful – her hair was flat ironed (and lice-free!) and she looked so well loved! Max’s hair is not as short as I feared and he looks oddly vulnerable. I thought he’d look tough, but you can’t turn Opie Taylor into a skinhead, no matter HOW short you cut his hair!
We went down to Canadian Honkers for dinner last night, we all ate well and laughed. The kids went off to swim with Gerry, masked, looking on. Gayle and Elaine walked Atticus and I ran to the grocery store to stock up on necessities and some fun stuff for Gerry to entice him to eat when I’m gone.
The kids are sleeping down in Grandma / Aunt Gayle’s room because we want to keep this room as person-free as possible. Also, there’s no need for them to get up at 4:45 – and we can’t really leave them alone in the hotel room – so it’s easier for everyone if they sleep in the pull out bed.
Just another night without my kids. I miss them so much. They’re one floor away and I just want to go wake them up and hug them. But I won’t. I’ll just sit up for another 40 minutes watching A History Of Britain – the best sedative I have.
Thanks to everyone who’s written with good wishes for today – our wake up call just came through, so I guess it’s time to wake up the man of the hour!