Pile-O-Presents

We had a mega-gift exchange yesterday!

It was post-Chanukah. It was post-Christmas. It has been like holding your breath while the world celebrates its various winter holidays.

We were waiting for Adam and Laura to arrive.

We picked them up at the airport yesterday and brought them home to the mountain of gifts heaped on the coffee table in the living room.

What we did in the the order we did it in:

1. "Oohed" and "ahhhed" over Laura's engagement ring.

2. Took their suitcases up to their room.

3. Opened presents. And then opened more presents.

4. Toasted the engagement with champagne.

5. Drank eggnog.

6. Stayed up late and talked. And then talked some more.

Today we all went to the Richard Avedon exhibit at the Detroit Institute of Arts.

Afterwards, the kids drove to Ann Arbor for dinner and a movie. (It's gorgeous in downtown Ann Arbor with the twinkly lights on Main Street but a bit cold -- in the teens -- to do too much outdoor wandering and window shopping.)

Tomorrow we're going to look at wedding venues in Ann Arbor in case the kids choose to get married here in Michigan. They will also be looking for places to get married in LA when they get back.

Marika and Evan are driving to Chicago tomorrow or Wednesday to ring in the new year with a friend of Evan's from Stanford days of yore.

Haiku:

Fashion photographs.

Avedon had a talent

For capturing Dior style!

Fifteenth Day of Chanukah

For most of you, it's Christmas morning as you wake up today. Merry Christmas!

For us, we've continued the "miracle" of the lamp oil that lasted eight days and, pushing the envelope a bit, celebrated the fifteenth (!) day of Chanukah last night with a dinner of latkes and homemade applesauce. (We had waited until Marika and Evan and my mom and brother had all arrived before we made the biggest, greasiest mess that can ever befall a kitchen.)

Gil had another appointment at Karmanos yesterday morning. He got the final results of the bone marrow biopsy taken over a week ago and (your prayers have been working!) the news is very good. He is 100% his sister's cells (thank you again, Genie) and there is no evidence of any remaining cancer cells or ugly mutations in the DNA of the remaining stem cells.

He isn't cured but he is headed for a cure and he is certainly considered in remission from his cancer at this time.

He asked his doctor how effective the yellow masks are at protecting him from the general population when he's out in public because he doesn't want to assume any false assurances that he's protected.

His doctor smiled and said, "The masks provide "cosmetic protection". That is, when people see that you're wearing a yellow mask, they tend to keep their distance from you, and therein lies the greatest protective factor!"

He's still dealing with a bit of graft vs. host disease but it's being treated appropriately and is a "minor burr under the saddle" in Marika's equestrian terminology.

He's on Day 79 post-transplant and he's feeling good. He's gotten permission from his physicians to start working out at the gym which he's eager to begin once the holiday is over.

Haiku:

Family gathered

Sleeping in this cold morning.

Enjoying their dreams.

The Proposal

Great news for us this season!

Adam has asked Laura Fahey (his beloved) to marry him. We are thrilled because we've loved Laura -- and her whole family -- since the first time we met them. What I like most about Adam and Laura's relationship is that they bring out the best in each other. Together they make more than the whole. And they're fun to be around.

Marika and I have had a wonderful week together since she's been home. She's at the airport now as I type this picking up Evan whose flight from LA is arriving momentarily.

Evan was in LA last night and had been clued in to Adam's plan to propose to Laura. Evan was "on call" to come with champagne, roses and his camera to capture the moment.

Adam and Laura head to Boston to show all of Laura's relatives her new jewel. They will swing by Michigan for a few more days before heading back to LA.

Gil is feeling okay but not great. It's probably a little bit of graft vs. host disease rearing its ugly head again. Our appointments during these next few holiday weeks are off schedule and we go in this week on Thursday, Christmas Eve. There will probably be some medication adjustments based on lab values and telltale signs of the the graft vs. host symptoms.

We feel lucky to be on Day 75 on our countdown to Day 100 when we will have arrived at the time when the "acute" graft vs. host symptoms and risks will change to "late" or "chronic" graft vs. host symptoms. The "chronic" symptoms, we are told, are more inflammation-based. We're not there yet.

Haiku:

The kids get engaged

When is it that easy

To commit to love?

Holiday Cards are in the Mail

The holiday cards have been sent! Yours should be arriving within the week.

If I've inadvertently left you off the list (sorry), or yours got lost in the mail (egads), or if you want me to send you one because you didn't get one and you want one and I probably don't know your address, let me know where to send it and I'll put one in the mail to you. (karen.raff@gmail.com)

The photo of our family on the front of the card was taken when we were all together at Thanksgiving courtesy of Marika's dear friend, Lindey Sibel. (Thank you, Lindey. Good work!)

You won't believe it but I sent out over 400 cards this year. There are so many of you who have sent your "good wishes" over the year and we wanted to thank you all.

Marika arrived home from Santa Barbara last week. We've been inseparable. Gil has had two appointments down at Karmanos since Marika got home and she's come with us both times. Today he had a bone marrow biopsy and Gil allowed her to observe the procedure.

Evan gets home on Monday night. My mom and brother arrive on Wednesday. Adam and Laura arrive on December 28th after their visit to Boston with Laura's family. So we'll all be together again.

Gil has been cleared to "go back to work" in a limited way starting tomorrow. He will read cardiac CT studies from home this weekend. He's not allowed to work "in the hospital" yet due to the high risk of infection. When all of this leukemia business started back in June, he set a target date when he "hoped" to return to work as the end of the year. And it looks as if he has been lucky enough to meet that target. We're grateful.

We've been wrapping and sending presents to family and friends this past week. And we're having so much fun doing it. Giving feels great!

Haiku:

Marika is home

We're loving having her here

She makes our hearts glad.

Genie's Cells Take Over

On the day this photo was taken, we were walking along the Milford Bike Trail and stopped along side the Milford Dam which was once used to generate electricity for a portion of our small town.

We've made it to Post Transplant Day #67.

We got good news at our clinic visit last Friday. Genie's stem cells are now evident in 100% of Gil's peripheral stem cells. This is a more accurate test than the earlier peripheral estimates where it was shown that 100% of Gil's myeloid line and 77% of his lymphoid line were being produced by Genie's stem cells .

The test results we got on Friday were also from a peripheral blood sample but measure the percentage of cells containing either XX or XY chromosomes. All of Gil's stem cells now have the XX chromosome in their DNA which is evidence that they are Genie's "girly girl" cells. This is very good news.

There were no cancerous (leukemic) cells seen in the peripheral blood sample this time whereas they had been seen in small amounts in past samples. This does not mean that there are no leukemic cells remaining. It simply means they might not be in high enough concentrations in the peripheral blood to be picked up for measurement.

And we want to know if they're still there in any small but measurable amount at all.

So the next step is for our Karmanos team to look at the bone marrow itself. Gil is scheduled for another bone marrow biopsy on Friday this week to see if there are any leukemic cells in the bone marrow that simply hadn't had time to make their way out into the peripheral bloodstream yet.

He's feeling good. Lots of energy. A small bit of graft vs. host disease as evidenced by a mild skin rash on his thorax but it is being treated and as we've said before, it is a "good" rash because it means Genie's cells are recognizing Gil's few remaining cells as "foreign."

It's icy out today so we will head to the indoor "controlled climate" of the mall and walk with the "mall walkers" before the doors open to the public.

The main threat now to Gil's continued successful recovery is opportunistic infection and pneumocystis pneumonia is one of the big ones we need to avoid.

Marika flies in from California tonight and we can't wait!

Haiku:

Heading to the mall

Not to shop but to walk.

Retail stores need more buyers!

Wednesday Lunch Bunch

Yesterday was our regular Wednesday lunch date with our two transplant unit friends. Bonnie had us all to her home in Lansing for the afternoon -- hearty homemade vegetable soup, bread and fruit salad. What a treat!

All the "patients" reported doing well and I felt left out! I was the only one there who hadn't gotten a bone marrow stem cell transplant!

Blustering snow on the drive home but that's what winter in Michigan is all about.

Went back to my Pilates studio last night for the first time since Gil was diagnosed with leukemia. It had been six months!

My arms and calves will be sore, but what a delightful soreness it will be.

Haiku:

Putting off workouts

Never a good idea.

First time back is a killer.

Clinic Days

This is the waiting area for the Bone Marrow Clinic outpatients. We're lucky that we've graduated for the time being to once-a-week appointments. Our next one is this coming Friday.

The wall above the clinic entryway is filled with recognition plaques for the generous donors who have made all this possible -- bringing together the experts in their fields so that the transplant recipients can get their cutting edge care in one convenient place.

In early December both of our "transplant" friends who I've mentioned before were released from their "one-hour's-driving-distance" restriction to go home where they can enjoy the rest of their recovery and reenter their normal lives and routines. Today we're headed to Lansing (where one of these friends lives) for another of our weekly Wednesday lunches.

Gil is feeling human again and is working daily from home on all matters of importance. We're grateful he has the energy and clarity of mind to contribute to ongoing research projects at Beaumont and administrative concerns when he can add something positive to the discussion.

Marika completed her first final exam early this week (dreaded physics) and has a few more to go on Saturday.

I sent her the following helpful hint prior to her physics final:

"Magnetism, as you recall from physics class, is a powerful force that causes certain items to be attracted to refrigerators." -- Dave Barry

She leaves Santa Barbara for Winter Break and drives to LA to celebrate Adam's birthday (he'll be 27) and fly home to Michigan the following day (December 11).

Evan gets home on December 22nd and will be here for a week.

Adam and Laura will head to Boston (Laura's home town) for the actual days before and after Christmas and then come to Michigan to join the rest of our family on December 28th.

My mom and brother are driving up from Louisville, Kentucky for the three days at Christmas so we will have a cheerfully full house.

In the meantime, getting ready to celebrate Chanukah on December 12th and buy the latke ingredients for our traditional spread!

Haiku:

Winter cold set in

Snow appeared overnight

Melting as I type this.

Marika and the Vanilla Cupcake

This is a story about Marika's room.

Over the summer, Marika and I had reminisced about her days of riding horses competitively and how much she missed that time with her friends at the barn and the regional/national horse shows. We talked about her hours of dedication to her horsemanship that are now put on the back burner as she pursues her pre-med coursework at college.

She wondered if we couldn't resurrect and frame some of the photos that had been taken at the shows and put them up in her room as a reminder of some of the very "good times" she remembers.

We left it at that. Just "thoughts" and "wishes" that she could be surrounded by some of the really memorable photos of the horses (Oz and Baily) that took her to winning rides.

Enter "Marika's Mom" and her "need to do something creative!"

While Marika was at school this quarter, I called the professional photographer who had been the designated show photographer and had 16"x20" prints made of two great images. I had them framed (Yikes! Expensive!) and began "decorating" the room around them.

Marika had chosen a bright and cheery quilt over the summer in the rich blues you see in the photo above.

I added bedside tables and lamps and pillows from IKEA. Our indispensable handyman painted the wall the bright blue color you see (and love).

Then I went about getting the perfect candles and smaller decorative elements for the rest of the room. (Only thing I couldn't afford on my budget was a flat screen TV for the room!)

I surprised Marika when she arrived home for Thanksgiving the first night by telling her in a calm and casual way, "Go ahead and put your suitcase up in your room and come back down to tell us about your flight and school."

She went upstairs expecting her "old" room and was greeted by her "new" room. There were gasps of delight and surprise and a few joyful tears.

"Mom, I can't believe you did all of this for me!" she said.

After a few days of being here and getting used to the "newness", I asked her what she liked best about the new room makeover.

"My room smells like a vanilla cupcake every time I walk into it!" she said, commenting on the soy candle wafting away in the corner 24/7.

(And that's not such a good thing, we both agreed. Marika and I added pounds during our summer vigil in Gil's hospital room -- what else do you do but eat and go to Starbucks downstairs in the hospital cafeteria when you're a visitor all day every day -- and we don't need anything else that smells like a vanilla cupcake!)

I think we'll change out the soy candle to the pine scent of a winter forest!!

P.S. Marika gets home for her two weeks of Winter Break a week from tomorrow. The countdown of 10 days begins today.

Haiku:

Girl coming home soon

Her Dad's favorite daughter

Her Mom's pride and joy.

The French Laundry ... Again!

Although the kids have all gone back to California, this photo needed to be shared. Obviously we were all out to breakfast at The French Laundry. It's one of the few times Gil has ventured out in public and we cherished the morning together.

(Remember it's the first 100 days that are critical in the recovery process.)

Yesterday was Day 55 for Gil post-transplant. We were at the clinic yesterday morning and he was showing signs of beginning GVHD (graft versus host disease) so the team began aggressive treatment with steroids to get it under control. Realize, please, that we want a certain degree of GVHD which means that Genie's cells are doing their job in fighting Gil's remaining tumor cells.

I've often described the GVHD process as a war-like situation. There are skirmishes from each of the stem cell "camps" -- border-fights if you will -- when Genie's camp of stem cells crosses the divide and provokes Gil's camp of remaining stem cells that don't want to admit defeat yet.

After being attacked, Gil's cells rally themselves to mount a counter-attack. And on it goes. One skirmish after another. Sometimes it's an overt skirmish, with outward signs, and sometimes it's covert and we don't know it's going on.

The battles will continue until Gil is declared "leukemia-free." We're not there yet.

While the kids were here, they gave me a book of Haiku poems. I've learned that the 5-7-5 pattern of syllables in not absolute. Here is one I've recently discovered and wanted to share:

Haiku:

shaking

the packet of seeds,

asking, are you still alive?

Kiyoko Kotukomi

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.

Adam

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.

Haiku:

Raff clan together

A good time to share stories.

What a year we've had!

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: www.usatoday.com 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.

Haiku:

Driving around town.

Avoiding rush hour traffic.

Getting home safely.

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!

Haiku:

Waking before dawn

A full day always scheduled

Night comes too quickly.

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 (http://www.chelsearivergallery.com) 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.)

Haiku:

Day Thirty-Seven.

Has it really been that long?

Sometimes seems so ... brief.

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.

Haiku:

Eating with our friends

Followed by a walk outside.

These reunions help.

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.

USC

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.

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!

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?

Ratatouille and My Anniversary

This was "Entry #3" last year and it was clearly the winner when the voting was over.

I took this photo outside the Radiation Oncology department at Beaumont last year on Friday, October 31, 2008 where the radiation technologists were holding their annual pumpkin carving contest.

The date is significant for me because, as some of you know, that was my last day of radiation therapy for breast cancer which had been diagnosed on August 15th, 2008 -- a little over a year ago. (Picked up on a routine annual mammogram! Thank goodness I don't ignore them.)

I had two surgeries during that summer to obtain clear margins but now I am fully recovered. Halloween has become a "scary" time of year for me in more ways than I care to remember.

Yesterday was one of the first days since we've been home that Gil did not have a "good" day. He was really, really tired and slept most of the day. This was different from the fatigue he's been feeling each day. We didn't observe any other significant symptoms so we'll watch carefully over the next few days for any untoward developing symptoms that might indicate he's got some Graft vs. Host Disease showing up.

(Remember, some degree of GVD is what we want -- that critical balance that is desirable from a transplant point-of-view).

Haiku:

You take what you get

Add some good times and then,

Don't look back too far!

Last Year's Pumpkin Carving

Apropos to the season, I've uploaded a photo of the kids at the Kappa House in Santa Barbara last year as they prepared for their pumpkin carving ritual. Unfortunately, this year finds Marika in Santa Barbara and the boys in LA so they won't be all together for the event.

Adam and Laura are hosting Evan and some of their friends tonight at their LA apartment for the annual carving rite. One of the things they love to do, and consider a "must-do" each year, is scoop out the seeds, wash them, put them on a cookie sheet with butter and salt, and roast them in the oven. This is something we all used to do as a family and provides great memories.

I went to my monthly Book Club dinner and meeting last night. We discussed The Girl with the Dragon Tattoo but I had to admit that I hadn't gotten past page 32 because -- quite honestly -- I couldn't focus on reading this past month while living at the hospital. It was a hard book to get into for me. My Book Club friends assured me that if I can just get up to page 35, I will be hooked. So .... three more pages to go and apparently I'll be compelled to keep reading until it's finished!

Gil had his second outpatient clinic appointment today. He's doing well. He'll be seen twice again next week, but if all goes well, they'll drop him down to once-a-week visits which is something to look forward to.

In the meantime, he continues to take daily walks and is regaining his strength. His white cell count is still in the low normal range so he can't go out in public or have people over to visit, but all things in due time they say.

Fall Colors Fading

It's Day +21 for Gil and his transplant. These first 100 days are the most critical in terms of his successful recovery. If it weren't already a book title (The First 100 Days), I would entertain writing it myself!

Yesterday's brief outing to the bookstore was our first "out in public" adventure. Gil, of course, wore his mask, and I assume most people thought he was protecting them from H1N1 flu symptoms rather than the other way around.

Gil bought himself two nice photography books at the bookstore while we were out. I'm grateful for his keen interest in photography as it keeps him engaged for hours on these sometimes long days when he can't hop in the car as he used to do and head out for an adventure.

Yesterday and today he woke up with bone and back pain. We never know if it's just arthritis flaring up on a rainy day, or the leftover remnants of the Neupogen injections he was getting, or something new entirely. We count on our medical team to sort out all the new symptoms and let us know if we need to be concerned about them.

Later today we'll put on our raincoats and head down the street for another short walk -- building up our distance and stamina each and every day. He's actually heading down the driveway now with the dogs to pick up the two newspapers and see what nature has delivered to our neighborhood this morning.

Big Sky

Gil and I walked down our street yesterday morning and as we were coming back up the driveway, the sky was "big" and this was the photograph he captured with his wide angle lens. Aren't we lucky to live in such a beautiful place?

(Did you know you can "click" or "double click" on the photos that begin each of these blog entries for a full screen view of the image? Try it.)

We made our first bone marrow clinic visit yesterday. We had been assigned a 12 noon appointment time and we've learned to avoid that time if at all possible for future appointments! We were waiting for everyone who was already late seeing their morning patients to go to lunch and come back. So there was a lot of waiting for us.

First we had blood work drawn. Then a visit from the nurse practitioner, pharmacist and finally our physician. They keep very close tabs on symptoms and developments as you are recovering at home. They want to know about any new rash or itch (indicating the skin's reaction to the new stem cells), any change in appetite or digestive habits (indicating the gut's reaction to the new stem cells) and any jaundice-like symptoms (indicating the liver's reaction to the new stem cells.)

The team is actually looking for some degree of reaction from the body to indicate that there is a very low-level graft vs. host process going on. It's considered a good sign to see some "waging-of-war" between the remnants of Gil's old cells and the establishment of Genie's new cells.

He continues to take the two immunosuppressive drugs which are titrated weekly depending on his measured serum levels.

Because Gil got a "good check-up" yesterday, we only need to be seen twice a week in clinic unless and until his condition changes when they would want more frequent monitoring.

As an aside, one of our fellow transplant friends -- who received his donor cells on the same day that Gil did -- called to check on us. He is staying in Guest Housing at Karmanos because it is required that you stay within a one hour drive of the center during your first few months, and we invited our new friend and his wife to come to our house this week and even spend the night this weekend if he is up to it.

Our friend said, "You know I need a 4 hour IV magnesium sulfate infusion each day, don't you?"

And we said, "Of course we do. Gil needs the same thing. The two of you can sit together in the living room sharing the IV pole and enjoy the awesome view out the big picture window!"

Another friend we made on the transplant unit is going home today and we are thrilled for her. There is a camaraderie that develops among the patients as they cheer one another on, empathize with setbacks and mark one another's progress.

While at the clinic yesterday, we heard lots more about what's to come in the next couple of months but we'll share that with you one day at a time as the weeks unfold.

In the meantime, Gil is ready to venture a bit further from home today, and asked if we could head to Ann Arbor for part of the day. He is not allowed to drive while he has his Hickman trifusion catheter in place, so I am the lucky chauffeur and I don't mind at all!

Out Photographing

Good morning! We were out photographing in between raindrops yesterday. I turned the camera on Gil and captured this moment.

It was not a real photo expedition as we often undertake, but a nice and easy casual stroll down the street to capture where we live and the activity of the neighborhood.

Today is our first clinic visit and we are told to prepare for spending the better part of the day there. Allow for time for blood work to be drawn and reported and deficiencies treated.

Gil is getting stronger with each passing day and the tiredness which is dogging him will resolve as he builds back his stamina.

More as the week progresses.

Haiku:

This morning's sunrise

A real treat to wake up to.

(Worth early rising!)

Not in Nigeria!

No. I'm not in Nigeria. Or in London. I'm in our own Michigan backyard today surrounded by our two happy girls, Haley and Jamie.

If you're wondering about the mystery title of this blog entry, many of you (unfortunately!) will not need to ask. My email account was hacked into yesterday and a scam email was sent out under my name to everyone in my online address book.

I spent yesterday resolving the issue by resetting passwords and cancelling credit cards, locking down online bank accounts and contacting Experian, Equifax and Transunion -- all of whom have put a 90-day fraud alert on our accounts.

I can only say I'm sorry if any of you "cashed in your life savings (!)" to "send $2500" to the scammer who perpetrated this sleezy hoax. From what I have been able to discern, your computers and email are not at risk having received this erroneous and unintended email from me.

If you're counting, Gil is post-transplant Day 24 and today is his third day home from the hospital.

We're not yet ready to venture out into public or prime time yet since his counts are still coming up, and he is most prone to infection during this time. He is keeping close to home, venturing out for short walks to the mailbox and a daily drive through the park nearby.

Saturday Morning Coffee

Gil is spending his second morning at home. He wakes up to fresh-brewed coffee. Everything is good.

We had our visit from the home health nurse yesterday afternoon. She instructed us on IV administration of magnesium sulfate which Gil will receive daily while he is taking Tacrolimus. The IV medication, mixed in 500 cc of normal saline, came complete with its own portable / disposable (!) IV pole!

Nothing on our schedule today but am thinking that Gil will want to take a drive around Kensington Park on this rainy day and "see" what he has been missing for the past few weeks.

He says he wants to get out and take some photographs and I'll be delighted if he feels up to it.

We're catching up on Mad Men episodes we missed and sitting next to a warm, cozy fireplace today.

Evan is in SF this weekend for Stanford's homecoming and a friend's birthday celebration in Napa. As far as I can tell, Marika is in the library (again) but was trying to carve out time to have fun with her Kappa sisters last night and again tonight. Adam is probably sleeping in this morning after his usual long week at the lab and plans to have a restful weekend.

Enjoy your weekend.

Home Sweet Home

Gil made it home yesterday afternoon and this is the view that greeted him on arrival. It's raining today ..... but who cares?!

Any weather condition is better than HEPA-filtered hospital air!

His first night at home was a good one. No problems. Taking lots of meds which I painstakingly set out this morning in those little plastic cups we get used to in the inpatient setting.

We get a visit today from a home health nurse who will show us how to administer the IV magnesium sulfate Gil needs each day to replace what the immuosuppressive agent, Tacrolimus, will deplete.

We go to the Bone Marrow Transplant (BMT) clinic on Monday for our first of many outpatient visits. Gil's condition will be assessed and of course, have his bloodwork analyzed for counts and drug levels.

The dogs were thrilled to have Gil back home and the feeling was obviously mutual. (Don't pets have the most amazing ability to lavish their unconditional love?)

I can just hear them thinking: "Hey, no hard feelings just because you abandoned us for the past 23 days. All is forgiven. Come rub us behind our ears. Ahhh. That's more like it."

Haiku:

Home again for now.

It can't get better than this.

Breathing in fresh air.

The Real Deal

Okay. You found me out. Yesterday's photo was not Gil. But today's photo is unmistakably the guy himself!

We're going home tomorrow. The whole team has been in and we're now getting our outpatient instructions and meds to take home with us.

We'll be seen in the outpatient clinic for the first time either this Friday or Monday to begin the close monitoring required of all post-transplant patients.

Everything is set. Our house was "cleaned" today on schedule and our two dogs are going to the groomer tomorrow so they'll be clean and look their best.

What more can I say? Whoopee!

Two girlfriends called last night and wanted to take me out to lunch while I was staying down here at Karmanos and I told them it needed to be today or never. So it's today!

Haiku:

Lots to remember.

Lots of packing up to do.

Homeward bound Thursday.

Bald is Beautiful

Today Gil got out the razor and finished the job. His hair was coming out in clumps and the time was right. We're getting used to the new look and hoping it "grows" on us. (A baseball cap looks like the accessory of the day.)

We got good news from our team this morning that Gil should be going home on Thursday this week. If all goes well, we'll be having dinner at home together on Thursday night. I'm thinking it's going to be a perfect night for cooking out on the grill.

It's interesting. When you've only been able to breathe HEPA-filtered air for four weeks, you find yourself aching to be outside as much as possible when you are finally freed -- smelling the fall air and feeling the chill in the air.

Haiku:

Packing to go home

(I brought too much stuff this time)

We won't be staying.

Engraftment is Successful!

His doctors have just come in and announced: "Engraftment is successful!" evidenced by the white blood cell count this morning which is 4.7. Yesterday it was 0.9 but now it's all good news!

Gil woke up to Week Four feeling a little better with the help of a patient-controlled analgesia (PCA) pump and heavy doses of anti-nausea medication.

Sips of Ensure keep his energy level at the "just-barely-there" level and we have not taken one single lap around the unit for two days now.

That said, these are apparently the worst days for this hyper-acute phase of the engraftment process. So it's "grit your teeth" and simply get through it to the other side.

He wakes up each morning to a pillowcase covered with his precious hair and he's made amends with encroaching baldness. (It will grow back.)

His spirits and attitude are remarkably positive and the nurses are in awe of his ability to accept what is happening and deal with the reality of being a patient.

They are always asking him what it feels like to be "on the other side" of the patient-physician side of things. His answer is always the same.

"It makes you appreciate your good health and gives you a new perspective when you're the one being treated."

Haiku:

It's the little things

(like a well-timed kind gesture)

That make us feel good.

The Siege Begins

The photo above was taken earlier today.

A normal enough start to our day. Gil was reading the NYT on the computer. I was "making coffee" which consists of boiling 8 cups of water in a Pyrex measuring cup in the microwave at the nursing station for 10 minutes and pouring it into the French press filled with Starbucks' Cafe Estima blend. This was all happening at 5:30 am this morning.

By 5:30 pm, everything had changed.

Gil spiked his first fever of this hospitalization. A temperature high of 102 degrees and shaking chills triggered blood cultures and a chest xray. Shaking chills like his earlier experience during induction chemotherapy has kept him uncomfortable and exhausted. His prophylactic antibiotics were all changed.

His mouth and throat are really sore and he can't swallow. He's getting pain meds IV every 2 hours to keep the pain at a tolerable level. His diet has changed from regular to Ensure. (He had a full breakfast of pancakes without any trouble.)

The worst of it is that all this was expected. And it's going to continue (they tell us) for the better part of the next week. We're not looking forward to it because we know what's in store.

WBCs are down to 0.3 and hemoglobin is at 8.3 after getting packed cells yesterday. He got a unit of platelets today for a platelet count of 9.

All this is caused by engraftment (the process of transplanted stem cells reproducing new cells) and a negligible white blood cell count.

Our doctors tell us that even as the counts recover to normal levels, the sore mouth/throat/gut and fevers will continue for awhile.

I'm so glad that I can be here to provide the comfort measures that will accompany the medical therapy Gil is receiving.

Haiku:

Yesterday was good

What a difference a day makes.

Keep moving forward.

Scrabble Anyone?

Okay. So this isn't really the way our board looked at the end of our game, but you get the idea. These are the "words" we've been throwing around the past few days.

Yesterday we walked two miles (that's 30 laps around the unit) and Gil participated in a work-related conference call with his physician colleagues as they worked through manuscript edits on a paper that is to be submitted soon. (It felt good to sit here in the room and hear Gil's strong voice contributing to the discussion.)

In fact, during the call his primary oncology doctor (Dr. Uberti, the Director of the Bone Marrow Transplant program) came in to see him, and I had to courteously guide him out of the room and explain that Gil was on an international conference call and could he "please come back at a more convenient time?" (Yes, I know it was gutsy!)

That generated lots of laughter when recounted on rounds this morning. Dr. Uberti said he had never been ushered out of a patient's room "in quite that way before."

We're on Day +9.

Counts are still coming down as expected. They're coming down slower this time around but no one on the medical team is concerned. Genie's stem cells are slowly setting up housekeeping in Gil's bone marrow now and should be manufacturing their own new and healthy (non-cancerous) platelets, red blood cells and neutrophils.

These new cells should reach maturity and enter the bloodstream between Days 10 and 14. We've just been waiting around for that to happen. Immunosuppression therapy continues with Tacrolimus and Cellcept for the foreseeable future.

Marika tells us she is doing a paper on Graft vs. Host Disease (GVHD) for her Honors Section class. We'll ask her to "guest blog" when she's ready to teach us something.

Haiku:

They're not "mall walkers"

They're "hall walkers" together.

A community.

What a Difference a Week Can Make!

In a week's time, a lot can change.

It's as true for color-changing trees as it is for stem cell transplant recovery. (I took these two photos a week apart and the color-change is almost complete.)

Today is Gil's Day +5.

He is told by his team that he is doing remarkably well. His counts are low (as expected) but the most important measure we are watching is his neutrophil count which is .7 today. The team likes to see the neutrophil count above .5 which they feel is the lowest protective level for fighting off infection. The level may or may not go down further.

It's all up to Genie's stem cells now.

Gil will start getting Neupogen tomorrow to boost the recovery of the neutrophils. His own stem cells used to respond quickly to the added Neupogen by increasing in count after just a few days. But since all of his stem cells were destroyed, we are in a completely new ball game.

Since the transplant, they will be boosting the neutrophils being manufactured by Genie's stem cells and we don't know how her stem cells will respond to Neupogen.

Genie has been back in California for two days now and she reports she is feeling fine. "Just happy to have been of service," she says humbly.

Marika is driving back to Santa Barbara this morning after a most satisfying Raff Kids' Reunion in LA with her brothers. (How smart of her to select an academic schedule this quarter that holds no classes on Fridays or again until Monday at noon! Better for those 3-day weekends!)

I'm headed to a nursing job fair at a local university where 30 nurse recruiters will be assembled from all the local, available healthcare facilities. I'm testing the market to see what opportunities might be available in healthcare in Michigan's bad economy. The Michigan winter is a long one and I'm going need something to do. (Can't lavish all my attention on Gil!)

Haiku:

Waiting is so hard

Feeling good ... but what's ahead?

No surprises please.