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. 

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.

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.

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!

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.

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.  

Future plans - Gil

My 'induction' chemotherapy is going very smoothly so far. I feel tired but otherwise well. The standard plan is to test the 'induction' program at 14 days, when I would be eligible for discharge if my bone marrow shows that the cancer cells are suppressed.

After that, AML patients need either 'consolidation' therapy with higher dose chemotherapy or a bone marrow transplant. In my case, testing of the cells in my bone marrow ('cytogenetic' testing), suggests that a bone marrow transplant is the better option.

My sisters Genie and Meryl will be having their blood tested for compatibility, as are my children Adam, Evan and Marika.

None of this is a hurried process as it takes time to achieve remission first. Thanks for the email....I'm starting to send answers.

Gil

Halfway through Week One of Chemotherapy

Gil is halfway through his first round of chemotherapy. At the end of this first seven days, he will stay in the hospital for another week awaiting the therapeutic results of the chemo. He will have another bone marrow biopsy on day 14 to determine the direction of his next round of treatment. It takes five days after the biopsy to know the results so you can see there will be a long period of time when we don't know next steps. Tonight our dear friends, Carol and Andy Bass, invited us to their home for dinner after we were finished visiting Gil at the hospital. As we left Gil's room at 5:30 pm, he was having and enjoying dinner and waiting for a visit from married friends who are physicians at U-M (Joe McCune and Gigi Sanders) and who trained with Gil when they were all residents together in Ann Arbor. All in all, Gil had a very good day.

Surrounded by the Kids

All three kids are gathered around their Dad, smiling behind their protective masks. It's been a wonderful support to have them here with us. I'm posting this photo to show you that Gil is feeling well today. He's editing his photographs on the computer while the chemotherapy does its job.

A place to say thanks - Gil

Its impossible for me to reply to all the heartfelt email I've received, but its been overwhelming.

It's nice to realize the connections from decades past still exist. I've missed my out-of-town friends more than they realize. Neal Shadoff called from Albuquerque and he, too puts so much into work that the rest of life suffers.

I will work through the emails and reply directly, although not quickly; I'm sincerely interested in catching up with friends and visiting (not just flying back and forth to conferences).

Gil

Doctors with disease - Gil

Its hard for anyone to describe a symptom to someone else. In my case, the most striking symptom of uncontrolled AML aside from fatigue was myalgia, muscle aches. I had a concept of what the word meant: really a mild inconvenience.

In my case, this was so severe that I had to lift my leg with my hands to get into the car and that getting out of bed was extremely painful no matter how I organized my strategy. When my arms became affected it was almost impossible to shave.

After a brief period of antibiotics and chemo, the myalgias are gone. Apparently the multiple infectious and cancerous cell interactions that were producing a cytokine storm that was wiped out dramatically by therapy in about 36 hours.

I have a new appreciation for "muscle aches". In any event, I'm now feeling close to normal.

Gil

Sunday, June 21, 2009 (Father's Day)

Hello friends and family.

This may be the first you're learning of what has transpired in our lives in the past two weeks. We've obviously added your name to a new email group to alert you that Gil is ill. Sorry it has to be such an impersonal way of notifying each of you. I'd rather be able to make a personal phone call to each and every one of you.

We've decided to start a blog so that you can have a central place for updates.

Quick summary: Gil entered the hospital one week ago today and was diagnosed after a bone marrow biopsy with acute myeloid leukemia (AML). This was not good news. Gil has enjoyed a healthy and active lifestyle, and to learn that he has cancer was a surprising and unexpected diagnosis. He was 100% healthy prior to two weeks ago. That is when his symptoms of tiredness and myalgias began and he had bloodwork drawn to determine the cause. Low neutrophils, low platelets and low hemoglobin pointed towards a leukemia diagnosis. Bone marrow biopsy the day after hospital admission confirmed it.

The treatment for AML involves chemotherapy and possible stem cell transplant. He started chemotherapy two days ago and after a few setbacks, he is into his first full week of treatment. He will be needing a bone marrow transplant (also known as stem cell transplant).

We won't be able to give you all the details about AML, or what the treatment course involves, but you can easily get information on the web. In fact, even though we're a medical family, we had to start on Wikipedia and slowly make our way up to more sophisticated medical resources to learn about his complicated disease.

Gil is in remarkably good spirits. He has high and low energy times throughout the day. Today is a good day and he has been up and walking around most of the morning.

Adam flew into town on Friday and is staying with us for the week. Evan is flying in today from LA having just come home yesterday from ten days in Thailand on vacation. Marika is home from school for the summer and is living at home while we support Gil's hospitalization.

One of Gil's health concerns regarding this current chemotherapy course is how he would handle the associated nausea. He was given a new anti-nausea medication called Aloxi which only needs to be given every 6 days! Imagine!

He will probably be hospitalized for 6-8 weeks so he has made his hospital room his "home-away-from-home" and it is pretty cozy if you overlook the "institutional" furnishings and decor.

Gil is on suppression precautions and cannot have visitors, fresh fruit, raw foods, or flowers.

I am taking phone calls on my cell: (248) 830-0517 or you can send cards/correspondence to: 4258 Windmill Farms, Milford, MI 48380 or email to: gil.raff@gmail.com

We're trying this "blog" thing to see if it makes updating Gil's condition easier. You'll let us know how it works for you?

With love,

The Raff Family