And then, a not so Memorable Day...

Yesterday we went over the hospital to get me re-hydrated. Court and Beth, wonderful dear family that they are, took shifts minding the kids, and Will and I made a day of it all around. * The docs rearranged my prescriptions, added a head MRI to my scans for next week, and gave me a few days off my cancer meds. It was a long day, but I am feeling much better now. The kids, on the other hand, are feeling a bit under the weather. We've warned you; stay out of Somerville for a few days...
Love,
A

*There is nothing like a few hours in the ER to remind you of how lucky you really are. While I was anxious and cranky with the staff for the long wait, a man came in with his finger in a glass of water. He had cut it off with a table saw; but being from Florence, he didn't even know the words in English to explain how it had happened. He was amazingly patient and calm about the whole thing. We were in the next cubicle from him, and though he was in some terrible pain, he was constantly cheerful. Say a prayer for that one please--and mind your fingers around electric tools. Be well.

Memorial Day

We've had a few hard days here. The RAF medication works by constricting capillaries and so cutting off the food supply to tumors. In light of this, the fact that several of my tumor sites are sore seems hopeful. On the other hand we've had a tricky time regulating the extremes of my blood pressure and blood sugar levels with various medications. With the fatigue, nausea and achy muscles, I was beginning to feel like a real genuine cancer patient!
However, Will has been amazing wrangling and distracting the kids, so I've got in a lot of sleep. And my sister Kate, hearing that I was feeling poorly, packed up her kids and her car and drove up from Conn to spend a large portion of 24hrs scratching my back. And today I am feeling much much better, Will's back seems to really be on the mend and Kate claims that she still loves us--even though she spent two night on the couch with one nursing baby and one throwing up toddler...Plus the sun is out, it is a holiday and Will mentioned bringing out the kiddy pool. Life is good! We are going out to play.
Lots of love,
A

Rehab

Hi-- Will speaking here. So, after my cortisone shot, my doctor said I needed to get some exercise to help my back get back into shape. So today, Xavier, Tilly and I did our own unique exercise-- groovin' to Micheal Jackson's Thriller!
I'm not sure my back feels better, but at least the kids are up on their 80s pop culture. Add that to Xavier's knowledge of Voltron, Star Wars and He-man, and Tilly's birthday acquisition of My Little Ponys, I think they're in good shape to defeat their generation in a game of Trivial Pursuit.

In terms of Aimee's progress, both of the last 2 pet scans have revealed no significant change. So she's going to continue using RAF-265 until something changes (hopefully for the better!). She started cycle 2 last week, and she'll have another pet scan (and maybe biopsy) in three weeks.

The Non Report

Xavier told me today that I was getting N-O-N flowers for Mother's Day--He meant M-O-M...I hope. In any case, here is my non-report...Today I had a ridiculously long PET scan. I was in there for hours thinking about how nice the folks in radiology were, how I didn't really mind the PET scans too much anymore, how I was going to get a nice sandwich on the way out, how much fun Xavier and I were going to have making lasagna for dinner. Then the machine made odd crunching noises and when he pulled me out, the tech looked worried. They never look worried. He quickly explained that he somehow had missed one of my big toes in the scan and he would have to call the doctor to see if he could leave it at that. Of course he couldn't, of course I should have refused and left, of course I didn't think of that until when, an hour later, I was back in the tube again for an extra half hour. By the time I was done, it was 6:30; the sandwich shop was closed, it was too late for lasagna and I have seriously been reassessing my assessment of radiologists. Ah well, at least I got a good nap. Reports should be in fairly soon--big toe included.
As for my biopsy, my nurse told me in all seriousness, that the Beth Israel report had come back, and it looks like...I have melanoma. Boy, did I laugh. I guess that is as far as their pathology report goes and the rest is still going to take some time as it has gone back through the drug company. Sorry to keep you all in suspense.
I hope you all are well. With love.
A

Overheard at the Cowan House

This afternoon, I overheard Tilly's first knock-knock joke.
While Xavier was busy in the little boy's room, Tilly stuck her head in at the door and said "knock-knock." Xavier, of course, responded, "Who's there?"
T: "Knicka Who."
X: "Knicka Who who?
T: "Knicka yous Head!!!" She screamed in delight.
I don't have a clue what it means, but they both burst out in uncontrollable laughter so obviously they did.

This evening, they were rewarded with some pudding for desert, which Tilly-as is her wont-promptly smeared all over herself and her sweater. Xavier then asked me if I would please wash her sweater tomorrow since I was in the "washing department."

And since I am telling tales...recently, Xavier wanted to know why Poppi had old hair, but no cracks in his face.

Tilly got upset because I called her honey. "I NOT honey," she fumed. "I sweetie! Daddy honey!"
She asked me to help her with her coat: "Zap my zeeper, Momma!"

In other words, all is well here. We are very busy and entertained. This week, Will got his cortizone shots for his bad back, and it seems like the pain is starting to ease up a bit. Hopefully, I'll hear some biopsy results tomorrow, as I am scheduled to start cycle two. My next set of PET scans has been pushed back to Wednesday but that should give us a better sense of if we should go on with this drug or switch to something else. As always, we'll let you know how it's going. Lots of love and thanks for all your love and prayers,
A