Tuesday, June 30, 2009

Space Junk

You are looking at a photograph of what Gil refers to as Space Junk. 

This is all the "stuff" -- used syringe caps and torn-open alcohol wipes and unit dose packaging for his many medications -- that accumulate on the floor of Gil's hospital room over the course of the day. It's not that the nursing staff discard these things on the floor intentionally. 

It's just that -- like real orbiting space junk -- these things seek to establish their own rightful place in the hospital room universe.  

Gil's day today was pretty much what everyone has been expecting. That is, the chemo is doing its job. It's killing the tumor cells but it's also causing the expected side effects of cell turnover inside the mucosal lining of the mouth, throat and gut. So he's uncomfortable but when asked, he says to me, "Don't worry. It's minor."

We've entered the week where the chemo is over and we're just waiting for the chemo to have its full and expected effects.

Stay tuned. 

Monday, June 29, 2009

How to be a Donor

Many of you have been asking, "How can I help?" 

And although many of you have sent cards, and emails, and brought over dinner, and let us unwind in your swimming pool, and invited us out to dinner and helped plant and weed my garden, there is another way you can help.

You can register to be a blood marrow donor by going to:

http://www.marrow.org

I've just signed up and I'm being sent a kit with swabs for collecting cheek cell samples and returning them in a provided envelope. Usually the cost is $52 but this month it's free by using the promo code they provide at the time of ordering. (You're asked to give your credit card info but the last screen shows a promo code credit and your balance owed is zero.)

I'm probably not going to be a match for Gil but I've entered my name in the registry and, hopefully, I'll be a match for someone, like Gil, on the waiting list. I hope so.

Gil's two sisters have the best chance (25%) of matching his HLA type and our kids have the next most likely chance. And they've all been tested and we're awaiting the results. Otherwise, he's dependent on the International Bone Marrow Registry donors. 

If he gets a perfect match, he'll get the transplant at Karmanos Cancer Center. An imperfect match will most likely send us to Seattle.

He will definitely need a bone marrow transplant if he is to be cured. 

Please consider joining the registry and getting typed for HLA.

Sunday, June 28, 2009

Answering Your Email

It's late Sunday afternoon and we've just taken a long walk around the unit. 

Gil is answering email in the photo so if you get an email response dated "Sunday, June 28 at 5:30 pm", you may be the person he is typing a reply to at the moment this picture was taken.

He's finishing his last day of chemotherapy for this round of induction when the IV bag you see in the background completes its infusion. He has weathered this week relatively well he thinks. His major complaint is tiredness.

We said goodbye to Evan today who is headed back to LA to start his summer research project. He will come back for another visit in late July.

Adam and Laura will be back in Michigan for the 4th of July weekend for another visit.

Tomorrow (Monday) starts a new week! We're grateful to all of you for your wonderful emails, and stories, shared poetry, and memories of good times past.




Saturday, June 27, 2009

Oh Deer!

The doe and her fawn that you see in the photo are getting braver and coming closer to our windows with each passing day. We are always on the lookout for them in the backyard and when we spot them, Gil and I would call out to one another to "Come quick to see the fawn!" and we'd quietly station ourselves at a window for the best viewing. 

By the time Gil comes home, the fawn's spots will be faded. (But the fawn and her mom will still be eating flowers from our garden and apples from our trees). 

We visited Gil this morning and watched some Wimbledon tennis together. He's on day 5 of 7 of his chemotherapy. His spirits are good and he's feeling okay but tired.

Tomorrow we take Evan to the airport for his return trip to LA. He brought his upbeat attitude to the hospital every day and it's great to have him around. (He's out golfing in Kensington Park with our neighbor friends right now). 

Gil's sister and his cousin come in tomorrow night from California and Seattle to spend time with us. Having family visitors gives me time to get other things done for the house and the dogs and the garden so I like having extra family around to share the visiting hours.

Gil has encouraged me to return to my twice-a-week Pilates sessions and I will get back to it this coming week. Sitting in a hospital room is NOT aerobic nor does it work the core muscle groups!

Friday, June 26, 2009

A Room with a View

Here's a look inside Room 8403: 

It can feel like close quarters when your room is filled with oxygen flow meters, IV pumps, blood pressure monitoring equipment, a large area devoted to hand washing and protective masks, a closet for clothes, shelves, a hospital laundry basket, and chairs for visitors. Depending on your attitude, it could be cramped or cozy. 

On the upside, there is a big, bulky bedside table which Gil lovingly refers to as THE BEAST. It's on wheels but you need all your strength to move it from one side of the bed to the other. It's got lots of storage. It holds his two laptops, a Kindle, three paperbacks from the library, a fresh cup of water in a styrofoam cup, tissue box, nurse call button, a cell phone, newspapers and medicine cups filled with pills. He's got his space set up to be bed-centric, and for the moment it seems to be working out just fine.

Thursday, June 25, 2009

Family Dinner


The attached photo shows the Raff family (minus Gil) in front of our small but bountiful vegetable garden. In the photo we've just harvested five different kinds of lettuce that are growing and went into the salad we made that night for dinner. Haley, our 12 year old Border collie, is resting nearby. (Jamie, our 10 year old Border collie, is relaxing off-camera). We miss having Gil at home for dinner each night but we do manage to catch up with him for meals at the hospital. Gil's appetite is waning and we offer him high calorie protein drinks throughout the day. He's getting lots of rest and sleeps frequently during the day to maintain his strength. Gil is almost done with his first week of chemotherapy and he's doing remarkably well. Adam is now in Boston. Evan is staying in Michigan until Sunday. Marika and I are having a day to ourselves tomorrow (Friday) in Ann Arbor (also known as a spa day) and Evan will spend the day visiting with his dad.

Kids and Kindle


The Kindle arrived yesterday and was put to immediate use. Gil was reading a book before the unit was even fully charged. It's very cool and a real technological coup for Amazon, the creator of this latest gadget. Recommendations on "ease of us" and "readability" will be forthcoming as Gil navigates his way through chapters of his favorite reading material -- science fiction, NYT, poetry and adventure stories. Adam is headed on to Boston for a wedding this weekend. Evan has decided to stay until Sunday. Looking forward to a quiet weekend. Hospitals are beehives during the week but slow down to a manageable pace on the weekends.