Friday, November 27, 2009

We're cooking now!

Friends and Family,

Today marks the final day of my Thanksgiving vacation, but I am not ready for it to end. I have spent four family-filled days here in beautiful (and grey) Michigan, laughing and eating my way through the holiday. It has been a wonderful escape from the perpetual 70-degree sunny weather in southern California that I usually endure (wink-wink).

The Thanksgiving holiday rings especially true with the Raff family. Life, as we’ve realized, is a winding road. But with modern medicine, love and thoughts from family and friends we have continued moving forward.

This year, I’m thankful for my Dad and Mom.

My Dad’s strength and determination to conquer this disease has been immense. Throughout this process, he has remained optimistic, realistic and always thoughtful. I never saw him once frustrated or angry with the nurses or doctors he often depended on for even the smallest favor. He never lost his patience or lashed out despite the countless pokes and prods that he endured. His will to win is stronger now than ever.

My Mom’s kindness and patience has been endless during these past few months. She has played the role of wife, mother, nurse, housekeeper, guidance councilor, therapist and chef, all without missing a beat. She has simultaneously hosted family from across the world, turned a hospital room into a home, kept family and friends updated and soothed my father’s aches and pains. She deserves a thousand standing ovations, but would never ask for one. She is truly the glue that holds this family together.

Thank you to all those who have given us strength these last few months. Thank you to all the doctors, nurses and hospital staff who have continued to perform admirably. Thank you to everyone who has asked how my Dad is doing. Thank you for all your thoughts – silent or voiced.

Happy Thanksgiving from the Raff Family.


Wednesday, November 25, 2009

Full Circle

The photo above was taken by Gil a couple of weeks ago as our Bradford pear tree was losing its leaves. It is titled Leaf Circle.

I liked using it as the accompanying image for today's blog entry because it reminds me of our family which has come "full circle" as we gather for the Thanksgiving holiday.

Lots to be grateful for this year at the Raff home.

All the kids arrived from California yesterday and it has been a non-stop family reunion since they got in to the airport. (They actually like the rainy, cool weather we're having this week!)

We're going to a matinee movie today after making a master grocery list and assigning Thanksgiving day dishes to each family member based on their "unique" specialties.

Gil usually takes charge of the turkey and is "apprenticing" Adam this year. Evan is the "green bean casserole", Marika is the "sweet potato casserole" , Laura is the "pumpkin pie", and Karen is the "mashed potatoes."

Gil is feeling good and has a remarkable amount of energy these days.

The kids have promised to add their own blog entries this week so check back for their unique perspectives on their time spent here at home in the days ahead.


Raff clan together
A good time to share stories.
What a year we've had!

Thursday, November 19, 2009

Good Things Come in "Threes"

You're getting a real treat today! In this instance, three is not a crowd. Three is a very good number.

Pictured above are our two transplant friends who, along with their spouses, join us for lunch on Wednesdays. We were quite a sight walking down the street yesterday. (The three of them looked like a walking infirmary with their private-duty caregivers following closely behind!) All three are doing remarkably well. We're adjourning our lunch meetings until after Thanksgiving.

We went to our clinic appointment this morning and all Gil's numbers are excellent. (This was the first bit of good news for the day.) The staff remarked on how good Gil looked for Day 43! His skin is a bit pigmented due to latent side effects of the chemotherapy and people who don't know his situation were wondering where he had been on vacation to get such a rich and glorious tan!

As we were waiting for the clinic appointment this morning, I was reading my USA Today newspaper and discovered on page 7D that Gil's colleague, Kavitha Chinnaiyan, MD, had been interviewed by the press and featured (and quoted) in an article touting their recently completed study on the cost and time benefits of cardiac CT in evaluating patients with chest pain in ER settings. The results had been presented at the national AHA Meetings held in Orlando this past week. (Gil had served as the Principle Investigator until he got sick this summer and had to turn over the reins to others in his department.)

The research results were widely distributed to over 300 news organizations and outlets. Check it out for yourself. Go to: for November 18, 2009 and select News and then Health and look for Cardiac CT. (This was the second bit of good news for the day.)

After the clinic appointment, and after getting my H1N1 flu shot, we headed over to Beaumont Hospital for a short visit and a couple of meetings. Gil has missed his colleagues and has been hopeful that he can begin to work from home part-time as his condition improves and as soon as his doctors approve. (They had said it would be okay to return to work soon and in a limited capacity if Gil is feeling up to it.)

He cannot work full-time and he cannot have any patient contact for a period of time -- usually about six months after getting the transplant -- to be determined during his recovery period.

You can imagine how difficult it was to leave a profession and career so unexpectedly (June 15, 2009) not knowing when, if ever, you would be able to resume your responsibilities.

He is beginning to cautiously lay the groundwork for re-entering the work force. He's hoping to have a presence (not a physical presence at the hospital but a remote presence through the magic of the internet) sometime before the end of the year. Fingers crossed. (This was the third bit of good news.)

The team of Beaumont physicians and staff (you know who you are) which has administered the cardiac CT and MRI areas in Gil's absence has enabled Gil to focus his energy on a complete and total recovery. They are handling all the daily challenges, writing and submitting manuscripts, presenting research results at national meetings and keeping everyone on the team motivated and productive. We are grateful!

Family news is as follows:

Marika is seeing the premiere showing of New Moon with all the Kappas in Santa Barbara tonight and got her ticket over a month ago!

Evan finished his six weeks of pulmonary study at school and started his next six weeks on the endocrine system. (He is an expert in phlegm!)

Adam is chipping away diligently on his PhD research with the intention of having his doctoral degree conferred -- along with the academic hooding ceremony -- in May 2010.

And as for me, well, I'm just about the nicest, most capable, patient, prettiest chauffer a transplant patient could ever hope for.


Driving around town.
Avoiding rush hour traffic.
Getting home safely.

Wednesday, November 18, 2009

Pie Making

Our apple trees are loaded! (Gil is the pastry chef here.)

There are plenty of apples from our eight apple trees to share among the hungry deer and our Wednesday lunch guests -- who always get treated to a freshly baked homemade pie each time they visit. (Hey, it's the least we can do.) They (our lunch friends) are still having to stay within the one hour drive's confines of Karmanos until they are further along into their recovery, and we have such a nice place only 45 minutes away where they can spend the day with us here in Milford, have lunch free from restaurant pathogens and take a long, leisurely walk.

Our clinic appointment on Monday went well. We got one of the reports we've been waiting for. It's the one-month post transplant analysis of the percentage of Genie's donor cells that have taken over for Gil's diseased cells.

There are two lines of cells that are being produced by Genie's cells. Her cells are producing 100% of Gil's myeloid line of cells which are responsible for the red blood cells, white blood cells and platelets. Of course, the myeloid line was where the original leukemic mutations manifested themselves in the disease process.

The other line of cells being produced is the lymphoid line and Genie's cells have only taken over 65% of that function. Gil's cells are still producing 35% of the those cells. The lymphoid cells are responsible for producing lymphocytes.

The team is expecting the lymphoid line to be at or near 100% by the 90-day visit.

A lymphocyte is a type of white blood cell and there are three major types -- T cells, B cells and natural killer (NK) cells.

T cells provide cell-mediated immunity -- they recognize pathogen-infected cells. B cells provide humoral immunity (relating to antibodies). Natural killer cells defend the host from both tumors and virally infected cells.

Gil's body is susceptible to all these infections -- bacterial, viral and fungal -- for the near future.

His immune system is the equivalent of a newborn's at this time. He will need all the vaccinations that a newborn receives. These vaccinations will begin one year post transplant for Gil -- childhood diseases, polio, etc. He will receive the H1N1 vaccine at the six month mark. (I am getting mine this week.)

There has been a flurry of photographing going on around here and Gil promises to post his own entry later this week letting you know what he's up to and showing some of his recent favorite images.

Stay tuned!


Waking before dawn
A full day always scheduled
Night comes too quickly.

Sunday, November 15, 2009

Sunday Recap

I chose to post this photo that Gil shot from our front porch because it showed my patriotism for the country during this past week of events -- Veteran's Day, Fort Hood shooting, discussion on Afghanistan, Health Care debate -- and because I love the bright colors it adds to our landscape when I'm outside and when our neighbors are driving by.

The war veterans have been on my mind and the upcoming important decision Barack Obama will be making vis a vis the strategy and our American involvement in Afghanistan. We watch Meet the Press, we listen to Fareed Zakaria, and now Matthew Hoh as they weave their opinions through the news broadcasts.

What is our country to do?

Gil has been feeling stronger and stronger every day. It has sort of amazed us (in a good way) and we don't know if it's the normal trajectory for getting back to his normal high-energy level or if it's a result of a recent switch in medications. For now, we're taking it at face value and getting out (with masks on!) to see the world again.

Yesterday we took a trip to Chelsea, Michigan for lunch at Mike's Deli with a friend (Gigi Sanders and her 92-year old dad) and a stop at Chelsea River Gallery on Main Street for a wonderful exhibition by Larry Cressman ( which amazed me. I thought from the photo on the website that the "marks" were made from a drawing material. But they are really tiny twigs attached to various backgrounds by tiny pins used by entomologists. Fascinating!

On Thursday last week, before heading to our clinic appointment downtown, we went to U-M's Rackham Graduate School for an artist talk by Kim Kauffman (another Chelsea River Gallery artist) on her technique of "cameraless photography" which she calls "chromegenic images." They're on the fourth floor of the building lining the hallways and well-worth a trip (up through December 18th.)

We are both involved these days in creating images -- phtographic and other -- because all aspects of nature in and around our neighborhood are providing such inspiration and material!

What does all this have to do with Gil's healing? It's healing of the creative spirit. We can get lost for hours and hours in its many possibilities. It helps fill the time until we are back to more normal living.

(Normal living? Whatever that will mean as we move through to the end of the year.)


Day Thirty-Seven.
Has it really been that long?
Sometimes seems so ... brief.

Thursday, November 12, 2009

Lunch with Friends

Another of Gil's fall photo series. He titles this one: Fall Dancer

We had fun yesterday when two of our friends from the Bone Marrow Transplant unit and their spouses came over for lunch. Wednesdays work for all of us because our clinic appointments are always scheduled as Monday/Thursday or Tuesday/Friday leaving the middle of the week the only day we are all available.

On the positive side, we're all sharing encouragement and progress with one another. On the negative side, we're like a 12-step recovery group trying to make it through one-day-at-a-time!
We've decided that at least in the short run, we'll try to get together every Wednesday while two members of our group are still restricted by the less than one hour driving distance from the hospital that the Karmanos team insists every new transplant patient observe. Both couples live near Lansing or Jackson so are just barely beyond what the doctors feel is a comfortable distance from immediate treatment or intervention should it be needed this early in the recovery.

There is Guest Housing on the Karmanos/DMC campus for recovering patients to live in or apartments nearby for rent until your doctor releases you to go to your actual home in between your scheduled appointments. By then, you're down to once-a-week appointments and can manage the drive. And you're past the most acute phase of the recovery period. Although, like Winnie the Pooh, you're never quite out of the woods!

(We are all barely 30 days out from the actual transplant procedure. Remember, the first 90 days are the most critical.)

On the day of the scheduled lunch, we greet one another warmly, visit for awhile, sit down for lunch, complain of "fullness and nausea", get up and bundle up in lots of warm clothes -- they're always feeling on the cold side -- and head out the front door for a leisurely walk down the street.

Then we head back in, jockey for the chairs closest to the roaring fireplace, and settle in for more conversation -- heartwarming stories, comparison of side effects, nostalgia over time spent together on the Karmanos unit.

At about 4 o'clock pm, everyone says their goodbyes, knowing they still have their IV magnesium sulfate infusions to administer when they get back to their rooms and must now negotiate the rush hour traffic back towards downtown Detroit until next Wednesday.

Don't know how long we'll carry on this new little tradition, but certainly until each of our transplant friends are "released" from their one hour driving distance restriction and can be settled back in their own homes for the remainder of their uneventful (hopefully!) recovery.


Eating with our friends
Followed by a walk outside.
These reunions help.

Sunday, November 8, 2009

Out Photographing

This is a photo that Gil took on a foggy morning. It is a barn and out-building and home all whitewashed the same white color that we pass on our way in and out of our neighborhood.

Gil's weekend was a good one. We walked the Milford Bike Trail, spent a morning at Borders Bookstore, and saw a matinee movie this afternoon.

We head back to the clinic tomorrow afternoon. It should be an uneventful visit because there are no new symptoms to report. Unless something is discovered in the lab work, we should be considered "home free" this week.

Gil is reading The Girl with the Dragon Tattoo and I'm reading Nudge: Improving Decisions about Health, Wealth and Happiness.

The kids are excited about the upcoming rivalry next weekend in PAC 10 college football as Stanford (Evan's alma mater) takes on USC (Adam and Evan's current allegiance).

Marika is making our favorite white chicken chili soup and says she wishes she were able to eat it here in Michigan next to the fireplace.

We'll see them all soon enough when they descend upon us at Thanksgiving. We're all scouting recipes to put together the best menu of favorites possible.

Even though I'm rather tunnel-visioned these days in helping Gil with his recovery, I do want to thank all the veterans and active service personnel who have allowed us to live with the hard fought freedoms we now enjoy.

Thursday, November 5, 2009


This photo of Gil was taken at "the end" of our walk down the block today. He starts the walk smiling but the effort definitely drains his energy and only the dogs are wagging their tails when we climb back up the hill! Hence, a bit of a gruff expression!

He's wearing the USC cap that the kids sent him this week. They told him it would be a conversation starter as in, "Why are you wearing a USC hat in Michigan?"

And Gil's answer would be, "Because my sons both go to medical school there."

And you know what? It worked just like that today.

We were at our clinic appointment and our oncologist said, "Oh. You have a USC hat on today. I did my bone marrow oncology training in LA!"

We spent the day at the clinic. (And I do mean the day! We left at noon. Arrived at 1 pm. Had labwork drawn, saw the nurse practitioner, saw the pharmacist, saw the oncologist. Drove an hour back home arriving in our driveway at 5:30 pm.)

We almost graduated today to once-a-week appointments. But there was some push back from our oncologist on making that change from twice-a-week to once-a-week so early in the recovery period. Even though we promised to come in at the first sign of graft vs. host disease (GVD) symptoms, he said that very often it is the blood work results at each appointment visit that alerts the team to a potential GVD issue that needs to be addressed.

Often the lab work that is drawn at the beginning of each appointment will let them know something isn't right and they will be able to begin treatment even before the patient feels that anything is amiss.

On a fun note, we invited one of Gil's transplant unit friends to come to our house for lunch yesterday. Mark and his wife, Kim, drove from their "temporary" housing apartment at Karmanos to our house here in Milford for an afternoon's outing and visit. They were glad to have some place new and fun to go for the day and I was thrilled to have company!

(Of course, everyone washed their hands a hundred times!)

Gil and Mark are soul mates of sorts. They both had their transplants on the same day. Mark was discharged a day earlier than Gil. Mark had an unrelated donor. (He had a related donor transplant 15 years ago from his Dad.) This was his second transplant.

Gil and Mark reminisced about their time on the unit and their recovery so far. Mark's wife and I commiserated about being the caregivers!

All is going well for Gil. His recovery is, thus far, right on schedule and basically uneventful.

My brother submitted his version of a Haiku and I am including it as a guest entry:

Vortex of dry leaves
Dancing to music they hear
I don't hear it yet.

Tuesday, November 3, 2009

BMT Clinic

When I sent this photo to my kids recently, Marika replied, "Ah. Yes. The all-too-familiar masks, Kleenex box and hand-foam sanitizer!" It's been a part of our lives for months now.

Gil is feeling better and better these days. He's getting stronger. The dogs are loving his new walking routine. They used to go down the street with us once a day. Now they are being treated to twice-daily walks as Gil increases his endurance.

He's adding light weight-lifting to his routine which is a good sign. And some abs workouts when the mood strikes!

Today we went out for our first "public" restaurant visit. You guessed it. We went to The French Laundry. We always feel welcome there. This time instead of asking for a table near the windows, we asked to be seated as far away from everyone as possible!

Gil's numbers are all back to normal. He has just the right number of white cells, red cells and platelets. Next week he will have a blood test to determine what percentage of his stem cells are his and what percentage are Genie's. The percentage should increase towards 100% Genie's by the end of 3 months. In the meantime, Gil's are incrementally declining and Genie's are taking over.

I've reclaimed my space downstairs and have a butterscotch-scented candle burning when I'm down there reading or doing my creative work. I am loving having a place of my own to go to. There is way too much "togetherness" around here sometimes.

Gil is not allowed to drive while he has the central catheter in place due to safety concerns should he be involved in an accident -- vis a vis the airbag going off and slamming into his chest where the line is placed. So we are together 24/7 unless I take off for an errand or some time out with friends.

I'm sure he can't wait to be out on his own again!

Sunday, November 1, 2009

Daily Constitutional

Didn't we have a beautiful fall day today in Michigan? Crunching leaves underfoot, we walked down the street with the dogs while savoring the neighboring horse farm's pile of burning leaves.

Not much going on over the weekend for us. Gil came with me to the grocery but could only manage up and down two aisles -- he picked out bread and a raspberry-blackberry pie -- before he retreated to the car while I finished up.

Tomorrow is our next clinic appointment. If all goes well, we could reduce our twice-weekly visits to one visit per week. Nothing is ever a sure bet but it is an appealing thought.

With both of us here at the house 24/7, I'm finding I need my "own" space to hide out in. We've got a finished basement which we don't use very much, and I've decided to adopt it as my own "getaway" place -- for reading and creative endeavors.

As I've been fixing it up, it's turning out to be a nice, quiet place to retire to when Gil is upstairs taking a nap in the living room and I would normally need to be tiptoeing quietly around.

The extra hour of daylight this evening was welcomed today, wasn't it?