Friday, July 31, 2009

The Other Patient

Gil was not the only "patient" this past week.

Evan had elective knee surgery a week ago Friday and he is on his seventh post-op day. He had an autologous cartilage transplant which repaired a 2x3 cm divot-type defect on his knee's chondyle surface.

I had planned to go to LA and take care of him but Gil's illness required me to be here. Marika took up the cause and has been there with Evan for the entire pre-op, operative and post-operative period. The contraption you see in the photo is a passive range of motion apparatus which is helping him get to a 90 degree flexion of his knee. Along with regular icing, anti-inflammatories and pain medication, he is slowly recovering.

Med school classes start this coming Monday but he is probably not going to be able to go to them due to the pain management issues and the fact that the leg cannot be in a dependent position for that long. He will have to take advantage of the class lectures that are posted on the internet. It's less than ideal.

The cartilage cells that were used to transplant were taken from his own cartilage many months ago during an arthroscopy and were grown in a lab culture these past four weeks. It's been a long process and he will be non-weight bearing on crutches for 6-8 weeks. Not an easy task for a second year medical student.

Marika is taking a break from her care-taking duties tonight to go up to Santa Barbara for the evening and hang out with her many school friends who have spent the summer there. She returns to Michigan on Sunday night and we expect her to sleep all day Monday.

(Another "patient" is my own mom -- who lives in Kentucky -- and who fell a week and a half ago while out for her 78th birthday dinner and fractured her pelvis. She is in a rehab center for another 3 weeks while it heals and she gets physical therapy. Normally I would have gone down to stay with her and care for her, but I obviously could not leave Gil so have depended on "the kindness of family and friends" back there to provide for her.)

Gil got up early again this morning and wrote an email about his recovery thus far. He sent it out to his research and medical group email lists. He immediately got back over 20 responses from you which he really appreciated.

Later in the morning, Gil and I had breakfast at our local favorite restaurant and all the waitresses came over to our table to welcome him back home. The short-order cook also gave him a thumbs-up and loaded Gil's "special" omelet with all the finest and healthiest ingredients.

We went to Ann Arbor for the afternoon to get his wetsuit-like shirt for swimming laps in cooler water and that was enough in one day to do us both in!

Can't wait until tomorrow (Saturday) which is the traditional Jewish day of rest -- because we need a day of rest!

It's 9 o'clock pm and we're headed to bed.


Muscles put to work
Remembering their function.
Exhausted by nine.

Thursday, July 30, 2009

"Hello Houston. We have REMISSION!"

Yes, Gil got official word today that he is in remission! It gives us a roadmap for his treatment options going forward.

About the photo above: That isn't a photo of me although I agree -- there is an uncanny likeness. This is a photo of one of our dearest friends, Debbie Peters, who made this quilt for Gil and included in her note to him: "With every cut of fabric, every block I sewed, batting and backing I put on, you were on my mind. I hope this quilt provides you with comfort and warmth. Fondly, Deb." He was so deeply moved and appreciative.

This is just one of the many kindnesses bestowed upon us from our generous friends, relatives and neighbors in the past months. From bringing us chicken-spinach lasagna and bruschetta, to feeding our dogs and playing frisbee with them, to sharing a few friendly laps at the pool next door, to your cards and letters and emails and phone calls and visits, we are indebted to each of you.

May each of you be as lucky as we have been should you ever be ill and have to depend on the kindness of friends.

Gil's numbers are good -- white count up to 5.6, platelets up to 231, hemoglobin hovering at 9.6. His oncologist does not need to see Gil again for four weeks. And there will be no need for transfusions of blood or platelets.

We have an appointment at Karmanos Cancer Center in two weeks' time to begin discussions about a bone marrow transplant. They must evaluate Gil's case carefully and make a recommendation, based on interviews and tests, as to whether he is a suitable candidate for transplant based on age, general health and emotional well-being.

All this can take some time, but it appears that time is in our favor. If there is a need to expedite the process, because his counts are decreasing, then it can be arranged more quickly. We don't know too many of these details yet or what the timeline might be. We will share them as we learn them.

In the meantime, Gil continues to fill the days with things that make him stronger and happier and healthier. He's beginning to feel like investing the cash in our investment accounts and think favorably about his work projects. (Don't get me wrong. He doesn't want to know about the projects. He's satisfied just thinking about them!)

Gil has been waiting for the good news of his remission status to send out his own email or blog entry. Don't know which form of communication he will choose. But I feel certain that you will hear from him soon.


A day like today
Comes just once in a lifetime.
Glad it was good news.

Wednesday, July 29, 2009

Easing Back into Shape

What a great feeling it was to wake up with Gil beside me this morning. (I think he felt the same way.)

He got up at his usual time, which is 4:30 am, as if he were planning to go swim his usual laps at the pool before going in to work for a full day.

Only today was different. Today was the first day of the rest of his life!

He made himself a he-man sized breakfast and drove the car down to the mailbox to get the newspapers. "I love being able to drive my Prius again. I needed my freedom," he said.

He came back to the house and wandered outside to survey the garden and listen to the birdsong and watch the sunrise. He read his Investors' Business Daily on the front porch.

Then he got back in the car and drove over to Kensington Park -- five minutes away -- and traveled the full route around the lake taking in all the runners, and bikers and skaters along the eight mile path where we used to ride our bikes -- and plan to do so again.

Then it was on to the recumbent stationary bike for a few "laps" and a gentle workout.

Next it was time to download Lance Armstrong's It's Not About the Bike: My Journey Back to Life onto his Kindle for some inspired reading.

After lunch, we went to our neighbor's for a swim and to start on a summer tan which Gil has sorely missed. He's pale from his low hemoglobin.

More reading, more garden gazing, more dog petting and walking through the house noticing every little detail again.

And a decision to clean the grill which had been collecting dust and dirt and bugs since being neglected for these many weeks. The "grill master" needed his cooking equipment and tools in prime condition. It was another night of chops on the grill.

We head to the oncologist tomorrow for blood work and to learn the bone marrow results. Preliminary results are in but we need to wait for the final report to learn (fingers crossed) if Gil has achieved full remission.


Twenty four hours long
This day is not over yet
Did someone say sleep?

Tuesday, July 28, 2009

Outa' There

Believe it. Gil's bed is vacant. He's outa' there. Gone home!

A wonderful surprise gift from our oncologist. Although the results from the bone marrow are not back yet, Gil was discharged this morning (Tuesday) to go home and rest and relax and enjoy all that he's been missing.

I couldn't pack us up quickly enough once the PICC line was removed and he had his discharge orders.

On the way home, we stopped at Five Guys (the new hamburger joint on 12 Mile and Telegraph) for a cheeseburger, fries and a Coke. Gil ordered jalapenos on his and when I asked, "Are you sure about that?", he replied, "Yeah. I want to live a little!"

When we got home, he didn't know what he wanted to do first. His list was long.

But the first thing he did was try on a pair of pants that had been hanging in the back of the closet for years that he had been "saving" for the day when he could fit into them again.

Well, he did indeed fit into them. But they had a high waist and a deep crotch and a couple of big pleats in the front and man-oh-man were they out of style. He quickly exited them and handed them over to go into the Salvation Army give-away pile. So much for saving stuff until we "lose those extra pounds."

His next desire was to take a long, hot, soaking bath!

He took a long siesta in the afternoon.

I asked what he wanted for dinner and he requested his favorite -- lamb chops. So off I headed to our local butcher. Like old times, Gil fired up the grill and we were eating one of our favorite dinners at our dining room table side-by-side again.

The dogs were apoplectic with joy when we arrived home.

All in all, a VERY good day! (We still await the bone marrow results to know if he is in remission or not. Will keep you posted.)


Homecoming was good
Familiar rooms and smells

Monday, July 27, 2009

Calorie Count

Gil came into the hospital seven weeks ago weighing 190 pounds. Today he weighs 166 pounds. He's lost 24 pounds.

Gil's assignment is to put on weight. His request for dinner was KFC -- original style. Chicken, mashed potatoes with gravy and sweet corn. "That went down just fine." he said. This is no time to be worrying about cholesterol and BMI and abdominal girth measurements.

When he comes home, he'll be working on gaining back his lost weight and getting stronger. We have a recumbent stationary bike in our living room which opens onto a gorgeous view of acres of lawn and trees and garden. Pedaling at his own pace, he'll work his way up to long walks and eventually get back to swimming laps to regain muscle mass. (He says he'll need a wetsuit to keep his scrawny body warm enough in the pool!)

We'll make meals together that he loves so he can get back on course.

The bone marrow biopsy was taken this morning and will yield preliminary results by late Tuesday afternoon. The team will let us know at that time if Gil is eligible to go home this week.


Eating more each day
Embracing food once again
Calories add up.

Sunday, July 26, 2009

Competing for Floor Space

Imagine living in a room that is 18 ft. x 18 ft. for six weeks. (I think that horses' stalls are bigger than that!)

Now imagine competing for floor space with five chairs (a recliner, a foldout sleeper-chair, two folding chairs and a high back visitor chair), an IV pole, a rolling blood pressure monitor, a walker, a bedside table and a laundry hamper -- all of which are surrounding the bed which is the big-space-taker-upper.

That's what we have here in Room 8403. It's cozy but we have to observe the rules of the road when we're passing one another in this small space. Traffic control is essential.

Gil's white count is 4.5 today so we've made it into the range (4-10) that the oncologists were aiming for. Now we wait for the bone marrow biopsy tomorrow morning to learn if there are myeloblasts (those unwanted immature cells) in the aspirate. That will determine whether Gil can go home.

Another Haiku (5 syllables, 7 syllables, 5 syllables):

Equipment on wheels
Competing for prized floor space.

Saturday, July 25, 2009

Stealing One's Thunder

Gil hasn't been the same since this leukemia diagnosis stole his thunder.

His normal enthusiastic, vibrant, inquisitive, and intelligent self has been undermined by this current illness.

That said, we can hear some thunder-like rumbling on the horizon. He's getting his mojo back!

Today his white count reached 3.4 and it's still going up. (Remember that his oncologist is looking for the levels to get to between 4 and 10 to consider Gil immunologically recovered and able to entertain going home.)

His antibiotics were all stopped today. We are keeping a food diary for three days to see if Gil is taking in enough calories on his own to stop the TPN.

On another note, Gil is grateful to a wonderful woman (Sandy) who works at Beaumont's East Registration desk and also owns a hair salon. She offers through Guest Services appointments for patients who need salon services -- like haircuts. (Gil says it feels good to know he can no longer be mistaken for Larry King.)

I'll close this Saturday night blog entry with another Haiku:

Thunderous applause
For sticking it out six weeks.
Ready to go home.

Friday, July 24, 2009

Moments Missed

Gil is doing well enough these days that I am able to go home for a few hours to take care of things. Today that included my witnessing the first bloom on our potted morning glory vine. 

Gil missed seeing it. Since I couldn't bring Gil to the "mountain", I've brought the "mountain" to him via the photograph above.

There are so many things we are missing together these days that used to be part of our lives. And will be again I'm hopeful.

Friday night pizza nights have been put on hold. It used to be an easy dinner for the last day of a busy work week. With a glass of wine and a recap of the week's events.

Morning coffee together has been put on hold. The first one up used to grind the beans fresh each morning, put the water on to boil, and make the most delicious coffee in the French Press. These days, he no longer has a taste for coffee.

On weekends, we would go each morning to our local Milford Coney Island*** restaurant, Dimitri's, for the breakfast special at $2.99. We knew all the waitresses.  

***For those who don't live here, a "Coney Island" is a restaurant particular to Michigan with booth seating and serves Greek food as a specialty in addition to the regular American fare. 

Occasionally, we would take a long drive up north to Fenton to eat at The French Laundry -- a very gourmet restaurant with outdoor eating and friendly waitstaff. It would take most of the morning but the drive was through Michigan countryside -- so green and lush at this time of year.

We would walk the dogs together through Kensington Park or when pressed for time, walk them to the pond at the end of our street. They were moping around the house today when I got home and I can tell they are lonely for us to be with them again like we used to be.

Gil used to go to the new vegetable garden and pick lettuce for our dinner salad. I miss those salads. Nothing tasted as fresh.

Yes, we are missing those good times together. And we'll probably appreciate them more than ever after this journey we've made together.

(Gil's white blood cell count is 2.4 today!)

Bad Hair Day

Recent conversation between Gil and Marika:

"Maybe I should just go ahead and cut my hair short. It's still falling out. It doesn't look good," Gil said.

"It doesn't look bad, Dad. Trust me." Marika said. "I mean, it's just really, really thin."

"Yeah. That's what I mean. It's really thin." Gil said. "I look like Larry King."

The neutrophil count is up to 1.8 today. This is what we've been waiting for.

The next bone marrow biopsy is scheduled for this coming Monday. The results of the bone marrow biopsy will determine next week's treatment plan. It appears that if all goes well, Gil could be coming home the end of next week.

He's very weak and he's lost a lot of weight. So his work at home is to regain strength and build up his stamina. He needs to put on weight and build muscle. We been told that this can take months to achieve.

During that time at home, he'll come back to the hospital for weekly blood work to monitor his white blood cells, red blood cell and platelets.

A week after he gets home, he'll have his first appointment at Karmanos Cancer Center (here in downtown Detroit) to begin preparatory talks about the transplant process. All this sounds cautiously encouraging.

And for the record. I've always had a fondness for Larry King and his suspenders and thin hair.

Wednesday, July 22, 2009

Hospital Haiku

Haiku is a form of Japanese verse, written in 17 syllables divided into 3 lines of 5, 7 and 5 syllables.

Razor blades are feared.

Time for electric razor.

Too few platelets.

Pondering life's twists.

What turns leukemia's key?

More research needed.

Outside the window

Hospital staff park their cars

Grateful patients wait.

"It's a game changer."

Gil's words in the ER.

Suspecting leukemia.

Infused TPN

Calories providing food

Running night and day.

Neutrophils rising.

Hail hematopoiesis.

(Medical jargon.)

Neutraphils are up to 0.9 today. The oncology team says we're aiming for a level of 4-10. Another bone marrow biopsy to guide treatment decisions will be done on Friday or Monday.

(BTW, Evan and Marika reported that the Wilco concert last night was well worth staying up for until 2 o'clock am!)

They are packing tonight to go back to California tomorrow. Evan is having elective knee surgery on Friday and Marika is going to take care of him for the next ten days. He's having an autologous cartilage transplant and will need to be on crutches for 6-8 weeks.

In the meantime, Gil gets stronger and feels better each day.

Tuesday, July 21, 2009

Imitating a Patient

Here's Evan imitating Gil as a patient. 

Leaning back in the recliner. Feet up. Totally connected. Charger cords plugged in. Laptop humming. iPod pumping. Meal at his fingertips. 

His care giver standing by waiting for his next request!

(Sounds cushy, I know, but try it for a day. Gil says it gets old real fast.) 

Gil has started his sixth week of hospitalization and that recliner has become his good friend.

Several months ago I bought concert tickets (as a surprise for Gil) to hear Wilco (a popular musical group) live at the Royal Oak Music Theater. Gil loves Wilco.

The concert is tonight. We were really looking forward to it.

Obviously, we didn't get to go but we did send Evan and Marika who were happy to go in our place. (It was that or sell the tickets on craigslist.)

Evan and Marika are there now, hopefully enjoying the music and the venue. We should have a critical review from them in the morning.

In the meantime, it's life as usual in Room 8403. Minus one concert event. There's always next time.

Monday, July 20, 2009

A Neutrophil Primer

Those crazy but critical neutrophils. You gotta love 'em.

Neutrophils are needed to fight off infection.

Neutrophils (stained purple in the image above), are the most abundant type of white blood cells in our bodies. Normally, about 100,000,000,000 -- one hundred billion -- are produced by normal bone marrow each day.

Gil's bone marrow was producing immature neutrophils when he was diagnosed with AML. After his first round of chemotherapy, his bone marrow was not producing any neutrophils. Now we are waiting for the bone marrow to produce normal, mature neutrophils.

Neutrophils are short lived. They have a half-life of four to ten hours when not activated and immediate death upon ingesting a pathogen. 

The normal range for neutrophils is 2.5 - 7.5 (x 1 million) per liter of blood.

Gil's neutrophil count made it to 0.6 today.

Up from 0.3 yesterday. 

Trending in the right direction, to be sure.

Sunday, July 19, 2009

Guest Blog: Moving in the Right Direction

Your faithful reporter and Gil's personal nurse extraordinaire (Karen) has earned herself a day off, so this post comes courtesy of Evan, the curly-haired youngster (lower left) in the picture of Gil, Adam and yours truly, circa 1989.

Upon arriving from Los Angeles on Friday I was pleased to find my dad in good spirits with his condition slowly improving after a few tough days resulting from the side effects of his Neupogen treatment. Fortunately, he is feeling "much better" and his face was bright once more when Marika and I burst into his hospital room on Saturday morning armed with smiles for him and a plateful of freshly baked blueberry muffins for the hardworking nurses on his floor.

We have been anxiously waiting for an improvement in Gil's neutrophil count and an increase in his albumin level. A rise in his neutrophil count would be a sign that his bone marrow has begun to once again produce cells after the trauma from his first round of chemotherapy. And according to his oncologist it would also significantly improve the aches, pains, and other side effects he has been dealing with recently. Albumin is a soluble protein that is critical for osmotic pressure balance. An increase in Gil's albumin would help with the edema in his lower legs, which at this point is more of an annoyance than a medical emergency.

The irony of chemotherapy treatment is that much of my dad's efforts to aid in his own healing have been staunched by the very therapy he is being given. For example, it's hard to increase your daily calorie intake when your tongue is sore (another apparent Neupogen side effect), nevertheless he is persevering to eat as much as he can to supplement the TPN.

Today, however, we got some promising news: Gil's neutrophils levels have increased steadily, if not slightly, from 0.1 to 0.2 to 0.3 (UPDATE: 0.6!) over the past three days. (For reference, normal values range between 2.5 - 7.5 x 10^9/L). In addition, while his albumin levels are still low, the albumin precursors in his blood were increasing, indicating that the edema he has been experiencing in his legs may soon improve.

While this progress can seem excruciatingly slow, it feels that we are finally moving in the right direction. Finding the joy in these "small wins" keeps our spirits up and our resolve determined.

In spite of everything, this experience has been a blessing in one regard: It has been a real treat to spend some quality time with my dad. Despite what he may think, sitting alone with my old man in his hospital room, quietly reading and talking about life has been tremendously enjoyable. Rarely do our two busy schedules permit us such unrestricted time to relax together and reflect on issues both significant and trivial.

For me, it's an opportunity to absorb some wisdom from the old sage himself. (Although it isn't a complete tragedy that his tongue is sore; I can finally get a word in edgewise). For Gil, I like to think that we help distract him from the annoying side effects of treatment and keep him connected to the outside world, even if just to report that Michael Jackson had died. (Yes, Gil was perhaps the LAST person on earth to hear the news a few weeks ago when we belatedly informed him the morning following the passing of the King of Pop).

So after perhaps the longest blog entry in recorded history (so says Marika) I am headed to bed. Tomorrow is another day where we look forward to the morning neutrophil report. Stay tuned!


Saturday, July 18, 2009

Time Off for Good Behavior

I got time off today for "good behavior." After nearly a week of hospital living 24/7, I was encouraged by Gil and the kids to go home, take a long hot shower, play with the dogs, pay the bills, eat something homemade, and check on my garden.

What you see in the photo above is how I found my garden this afternoon -- out-of-control, overgrown and neglected. I had no idea that tomato plants grew to be five feet tall. They've completely outgrown their space. It's a thicket in there. I don't think I can even reach in between the leaves and gather the tomatoes once they are ripe. Live and learn.

While I gardened, Evan and Marika entertained Gil for most of the day . When I came back to the hospital this evening, the kids were going to head in to Ann Arbor for a Friday night dinner at The Blue Tractor and a movie. They'll be back visiting again in the morning.

Gil says he had a good day although I was not here today and so cannot verify it! But take his word for it!

He was engaged with the kids which distracted him from some nagging back pain he's starting to experience. This is a new, and completely unwelcome, symptom.

Consider that the pelvic region is dense with bone and a major site for bone marrow activity. As bone marrow activity is increased (as in "Hey, let's make some more neutrophils!"), it makes sense that you might feel some localized discomfort in that area. And, in fact, it's a recognized side effect of Neupogen.

No neutrophils on the horizon, per the bloodwork drawn this morning. Another day of waiting.

As I watch Gil sleep tonight, with the assistance of some pain medication for the increasing back discomfort, I'm thinking of the day when we'll head out to the garden together and harvest some big, red, ripe tomatoes from our first-year vegetable patch.

Friday, July 17, 2009

Kidney Action Overtime

Gil knows how this little dog feels.

It's the story of what a large dose of Lasix (a potent diuretic) can do to make your day seem very, very, very long indeed!

Lasix (Furosemide) is given along with the administration of blood products to reduce the large fluid volume of the transfusions. Since Gil is getting two units of whole blood every other day, he is also getting Lasix every other day. 

Wikipedia says: "The name of Lasix is derived from lasts six (hours) -- referring to its duration of action."

His two kidneys keep him very busy on those days.

I was glad to see Gil wake up looking rested and full of more color in his face than we've seen recently. It looked like it was going to be a good day.

A unit of platelets was given today. His body just isn't making enough on its own.

And his appetite is returning. He advanced from a clear liquid diet, which he's been on the past week, to a regular diet to make mealtimes more appealing.

Bon appetit, my dearest Gil.

Thursday, July 16, 2009

Four Star Accommodations

The amenities for guests of patients at The Beaumont Resort and Spa are second to none.

Fresh linens every day -- but you have to make the bed yourself. Room service is available -- but you have to get the food yourself. Clean showers -- but you have to bring toiletries for yourself.

Beaumont has become my home-away-from-home for awhile.

Gil had a much better day today. Fewer fevers. Fewer requests for pain medication. More energy. Longer periods of sitting up in the recliner chair. Brighter expression. Fewer complaints.

No movement on the Neutrophil count yet. They're a stubborn bunch.

While we play the waiting game, we have more family coming to Michigan.

Evan, our son who is a second year med student at USC and who is working with Dan Berman at Cedars-Sinai on a summer research project (on cardiac CT, not surprisingly!), is flying in from LA tomorrow night to spend the week with us.

If you're following the blog from Beaumont, you'll probably be seeing us in the cafeteria and deli and Starbucks a lot. Stop us and say hello when we're down there.

Well, it's getting late. And it's been another long day.

Time to turn down the sheets, fluff the pillow (and put my own little chocolate candy on it for myself) and turn in for the night.

Sweet dreams everyone.

Wednesday, July 15, 2009

Liquid Gold

It's not five-course. It's not exotic. It's not gourmet. But if you're Gil Raff right now, it's life sustaining.

The TPN continues to flow and it's starting to do what we need it to do. That is, to provide the calories and energy to get through this leg of the journey when he doesn't feel like he has an ounce of strength left in him.

Who thought that regulating one's own body temperature and building new cells could be so draining? The episodes of fever were fewer today. Gil acknowledges that it feels good to feel normothermic for good portions of the day.

With an improved appetite today, beef broth and chicken broth were his first choices on a tray of clear liquids. "How many calories in Jello?" he's asking. 

The neutrophils are being stubborn and not coming back very quickly. We're having to wait patiently again until Neupogen's power of persuasion kicks in.

Genie flew back to California today and plans to return when her bone marrow is needed -- if not before. She was a tremendous support to her brother and to me as she visited and tended to all the household needs while I was staying here night after night at the hospital.

Meryl is on route to Israel as I write this. She has a long trip ahead of her.

Long-time boyhood friend, Barry Mennen, left yesterday after a quick 24 hour trip. He filled Gil's room with memories of growing up as boys in Brooklyn. His presence for most of the day left a brotherly spirit in the room that filled it to overflowing. 

It seems that Gil may really be about to turn the corner tomorrow or the next day. Fingers crossed.

Tuesday, July 14, 2009

Meanwhile Back at Home

Back at home, it's just not the same. 

Our "girls" have been waiting patiently near the dining room table for Gil to return and accidentally-on-purpose drop a table scrap or two for them. The canines want him back at the dinner table ASAP.

These days, Gil's dinner comes in a large plastic bag suspended above his bed and running through his PICC (peripherally inserted central catheter) line at 100 cc/hour -- Dextrose and Travasol and Vitamins and Electrolytes.

I think it's fair to say Gil is improving. His neutrophil counts are expected to increase but it's a slow process. The Neupogen he's getting should help. Fever is a continuing issue which is unresolved at this time -- attributed to a neutropenic induced fever or a drug fever. None of the cultures have come back positive. Antibiotics around the clock are simply keeping other opportunistic organisms at bay until his own protective cells can take over the job.

The days are much longer than 24 hours and the nights are even longer. I'm still staying in the hospital with him at night. The nursing care on the oncology floor is excellent but things go better for him when I'm here. I know what he likes to have done for him. And I know how he likes it to be done.

It's 10 o'clock pm now and he's sleeping peacefully, at least until the next set of vital signs are due. 

At least they don't wake him up to take his sleeping pill!

Monday, July 13, 2009

The Irony of it All

The irony is that this Beaumont publication was distributed throughout the kiosks in the hospital on June 15, while Gil was being admitted downstairs through the ER with symptoms of what we now know to be AML.

The article describes the efforts of a statewide registry whose participating institutions were able to reduce radiation dosage in patients undergoing coronary CT based on methods developed by Gil and his team.

Their research had just been published in JAMA (Journal of the American Medical Association).

As Gil's star was rising professionally, his own health issues sidelined him from the celebration dinner with his fellow authors that would now have to be rescheduled.

On a medical note, Gil's condition should be improving in the next few days since they've started his TPN (much-needed calories).

He received his first of daily doses of Neupogen this morning. (Neupogen accelerates the recovery of the neutrophil count).

Go, neutrophils, go!

Sunday, July 12, 2009

Slumber Party

Slumber party in Room 8403 tonight!

Gil had a better day today than he's had recently but his nights are still really tough.

I'm staying here in the room tonight to help ease the exhaustion he feels after these long days. He's still having fevers around the clock which make him hot and then cold within minutes of each other. 

I feel as if I'm needed to help with his temperature management. Ice cold washcloths alternate with blankets from the warming unit to make him a happy camper.

He starts his TPN (total parenteral nutrition) tonight. It will give him sorely needed calories, amino acids and vitamins. 

Unlike most slumber parties, I'm hoping we get at least four hours of sleep tonight!

Saturday, July 11, 2009

Fighting to win

Genie here. Gil spends his days watching the Tour de France. Like Lance Armstrong, he's fighting to win.

The senior oncologist in his group came to see Gil today and gave us some encouraging information. He said that it's almost certain that I will be a perfect bone marrow match for Gil, since siblings who pass the low-resolution blood test almost always pass the high-resolution test as well. We are, of course, quietly thrilled.

Gil got the okay to start a new regimen that will make him more comfortable: On fewer of the antibiotics that made him so ill. No need to force down food: he will be starting total parenteral nutrition (TPN) -- intravenous feeding -- and letting his poor, irritated digestive tract rest for a while. And finally, the doctor encouraged him to have as much pain medication as he needs to be so comfortable that his only complaint should be boredom.

This week, more changing of the guard. A visit from cousin Lois from Long Island tomorrow. Long-time friend Barry Mennen, from the old Seagate neighborhood, arrives Monday night. Evan comes in on Friday for a week.

Meryl and I leave on Wednesday. But, as governor Arnold would say, "I'll be back" when the time is right, to donate my bone marrow stem cells, if all goes as we hope.

Friday, July 10, 2009

Some Good News

We got guarded good news today.

Genie is a match for Gil's bone marrow type in a preliminary sense. That is, the low resolution blood test showed a match of 3 of the 3 factors that are tested for in this initial screening.

Today, more blood samples were drawn from Gil and Genie and sent to the lab for testing. This test is known as the high resolution test. It should tell us definitively if Genie is the perfect match.

To learn more:

We don't know how long it will take to get the results of the test.

We wanted to ask "what if this scenario unfolds?", "what if that scenario unfolds?" But our oncologist didn't want to go there. He's committed to finding a perfect match, be it Genie or someone from the International Bone Marrow Donor Registry.

(Our oncologist said he has a patient in the hospital currently who needs a bone marrow transplant and just today learned that there are four matches in the world that they will pursue. That is a lucky patient!)

We're hoping to find the perfect match, too. Can Genie provide the Gift of Life? Stay tuned.

Reading Hour

Remember being read to as a child by  your mother? Imagine being read to by your older sister as an adult?

Genie is reading to Gil each day and it helps to transport him beyond his hospital room's four walls.

Many of Gil's days resemble a preschool curriculum with activities mapped out for every hour -- getting ready for the day, catching up with the day's news with the NYT, checking the stock market, answering email, watching the Tour de France, and going for multiple diagnostic tests.

No news yet on the HLA type needed for transplant or the awaited results of the bone marrow biopsy beyond the "good" preliminary indication we related a few days ago.

It would be nice if we could know before heading into the weekend.

Hoping everyone has a good weekend! We're planning to have one ourselves.

Thursday, July 9, 2009

Chicken Soup Saga

Okay. We admit it. Mistakes were made. The best laid plans.....

Gil's much anticipated chicken soup yesterday was inadvertently left at home as we packed our bags for the day's visiting in the hospital.

Amidst the morning chaos at our house with four women living or visiting here, Meryl thought I was bringing it and I thought Meryl was bringing it.

We only succeeded in leaving it at home on the top shelf of the refrigerator!

Oh well. We'll try again today.

Gil's day was difficult again. He gets very tired in the afternoons which makes sense because his mornings are filled with showering and getting ready for each day, consulting doctors making plans for his treatment, and our arrival with news from friends and family.

In fact, he's asked that only Marika and I stay past 3 o'clock pm each day and that visitors refrain from stopping in after that time. He gets too tired, he's having a harder time managing pain control at that time, and frankly, he's exhausted.

These past few mornings he's tuned his TV in to the Tour de France which we always used to watch together when Lance Armstrong was riding and favored to win. It's ironic that as Lance battles to get up the hills, coasts on the way down, and battles to get up another one, Gil finds it a metaphor for his own battle.

We should be finding out today or tomorrow what HLA type Gil, Meryl, Genie and our kids have for bone marrow matching. They are, of course, Gil's best hope. However, we can still go to the International Bone Marrow Registry if the perfect match doesn't happen within our family.

Today both Meryl and I are going to ask one another as we get into the car, "Did you get the soup for Gil?"

Wednesday, July 8, 2009

Meryl's Mishpachah in Israel

Noun: mishpachah
(Yiddish) the entire familly network of relatives by blood or marriage (and sometimes close friends)

As you know, Meryl (in the center of the photo) arrived from Israel yesterday and adjusted herself to Michigan's Eastern Daylight Time with relative ease.

She left her large and loving family (husband and eleven children, their spouses and grandchildren) and came to heal, cajole, comfort and pray for Gil.

We're so glad to have her here.

Gil's appetite was improving yesterday (the prayers were working!) and it was clearly time to prepare some authentic homemade chicken soup (aka Jewish penicillin). Off to the grocery for a Kosher chicken, carrots, celery, parsnips, fresh herbs and other secret ingredients, Meryl was busy peeling, slicing, stirring, tasting and filling the house with the most wonderful cooking smells by the time we all got home from the hospital.

Can't wait for lunch in Gil's room tomorrow!

Regarding Gil's medical condition:

At the end of another difficult day, we did get some very preliminary news that the early/initial look at the bone marrow biopsy results appeared to be "good." (At this moment, we don't know what "good" means exactly but it will be the first question we ask our oncologists when we get in to the hospital in the morning). The flow cytogenetics results from the biopsy which will give us more detailed information are still pending at this time.

We're learning about all of this day by day with the rest of you. We're hanging in there.

Tuesday, July 7, 2009

Man's Best Friends

You can't have too many friends when you're in the hospital. Although this photo was taken last week, our oldest dog, Haley, objected that her canine profile had not "made the cut" in the last round. 

So she appears today courtesy of the photographer.

Gil is really feeling the effects of the chemo these past couple of days. He just doesn't feel like having anyone around except for close family.

And close family it was yesterday. All day long. 

As we said, his sister from Israel arrived and spent the day at his bedside. Adam and Laura got to the airport on time and are probably getting ready for long day at work this morning -- Adam in his PhD research lab at USC and Laura in her post-doctoral research lab at UCLA.

In the meantime, Gil's bone marrow biopsy results from yesterday are pending. We're in a holding pattern.

These are hard days for Gil to be a patient. Coming up with new but effective comfort measures seems to be the best way to get through these past several difficult days.

But being the creative sort of family we seem to be, we're all pitching in and coming up with "slogan-ready" "patent-able" devices and services and all matter of things that are "warm and soft and fuzzy."

Sunday, July 5, 2009

Garden Sanctuary

A trip to the garden sanctuary at Beaumont is always a good destination. It means that Gil has the energy to make the trip out of his room and down the elevator and into the warm garden space for part of an hour. 

Tomorrow (Monday) is a planned bone marrow biopsy which will guide the oncologists in their next treatment options. Biopsy results will be available to them in 2-5 days. Remission is the  possible and hoped for result. 

Then there is a 5-7 day waiting period for his cell counts to come back to normal. (Lots of waiting these days).

Tomorrow is also the Raff 's "changing of the guard." 

Gil's younger sister, Meryl, is arriving from Israel in the morning. Gil will have both of his siblings here with him for the next ten days.

Adam and Laura are flying back to LA in the afternoon. (Two trips to the airport for us tomorrow).

Meryl will overlap with Adam and Laura for a short six hours tomorrow while they try to catch up with one another's lives. Meryl and Laura have not met before. And Adam has not seen Meryl for many years.

We are trying to take care of ourselves as we continue to take care of Gil. With his blessing, we all went to see UP (the Disney Pixar movie in 3D) and got a chance to laugh and enjoy a very touching story about devotion and adventure and what's important in life. 

Saturday, July 4, 2009

Fathers and Fireworks

Family and Friends,

Today was a day to give thanks to our forefathers for the creation of an independent United States. However, my thanks was squarely directed at my father for my own creation and independence. I was lucky enough to spend this Fourth of July in Michigan visiting my Dad. 

My Dad had a tough night last night as a fever crept over him. We went in this morning knowing that it might be a short visitation day. However after a few hilarious stories of my early childhood airport fiascos with my brother Evan, my sister's bright laughter was filling the room and his spirits lifted. My Dad smiled, his eyes closed, and reminisced with us about his own childhood memories. He soon perked up and sat for a time in a comfy recliner chair he has recently commandeered from the nursing staff, munching away at a bagel sandwich we had brought from home. After a good visit, he asked for some rest and we dutifully obliged, wishing him a "Happy Fourth!" on our exit.

This evening my Mom, sister, girlfriend (Laura) and aunt (Genie) decided to BBQ at the house. We each carefully chose the best burgers, brats and beers from a neighborhood grocer and proceeded to grill up a feast. Several exclamations of "This is the best burger I have ever had!" filled the air and the chef (yours truly) knew he had succeeded. After dinner, Laura, Marika and I drove to Camp Deerborn for a spectacular fireworks display. Marika and I both agreed that it was the closest we had ever been to a fireworks show. The finale was all we talked about on the ride home.



Friday Night Pizza Night

Friday was a busy day for all. Adam and Laura arrived early in the morning and we spent the day visiting Gil.

There were five of us in his room for much of the day and it turns out that it was just too much. We will limit our family visits to two at a time. Otherwise, it is simply overwhelming.

We came home in the afternoon for our weekly "Friday Night is Pizza Night" dinner and a celebration of Shabbat. We invited our dear neighbor, Laurie Forbes, to join us and she took this photo for us.

After the traditional blessing over the food (the hamotzi), we said a prayer for Gil's healing (the mi shebeirach) and spent a long, quiet evening together. 

I spoke with Gil this morning and his night did not go so well. He's asking for his favorite foods prepared from home and we will make this happen. We have lots of cooks in the house these days and that request will not be a problem.

Today is the Fourth of July. We're going in to visit with Gil early and will leave later in the morning to celebrate our hard-won American freedoms with a barbecue cookout and fireworks at Kensington Park which is close by.

Thursday, July 2, 2009

A Dog's Blog

As narrated by our Border Collies, Haley and Jamie:

"We walked in like we owned the place. Kids were pointing and staring, old ladies were smiling and the security guards just waived us by.

Heads held high, we followed our noses to Room 8403 where we located our missing-in-action pack leader.

We had been given permission by the hospital oncology nursing staff to visit for a couple of hours if (1) we were up-to-date on our shots and (2) we were freshly groomed within the past 24 hours. Both conditions duly met, we jogged our way past the front doors ignoring the tempting smells of the nearby Starbucks, into the elevator, and down the hall to find dog's best friend (our owner, of course) patiently but eagerly waiting for us.

In the photo, we've sneaked into the large and airy patient and visitor garden atrium on Beaumont's sixth floor. We respected the fake grass and were careful not know what we're trying to say here. (We would not have been invited back!)

After much licking and treats and back rubs and ear scratching, it was time to say goodbye.

No frisbee throwing today but, all in all, a very good visit just the same."

P.S. Gil says to tell you he's doing well today and looking forward to the arrival tomorrow (Friday) morning of Adam and girlfriend, Laura, who are flying in from LA on a red eye to spend the Fourth of July weekend with all of us. 

Wednesday, July 1, 2009

Guest blogger speaks

Hi friends and family,

Sister Genie here. This is a picture of Gil and me at my house in Petaluma, CA just a week before Gil got sick. We were shocked that a healthy, strong guy like like Gil could be sideswiped like that. But his healthy constitution is in his favor, helping him to battle the onslaught of the cancer and the chemo.

Sunday night was the last day of Gil's first round of chemo and he's now in the resting period. Very soon, he'll get a bone marrow test to find out if he's clear. If he is, he'll get a round of "consolidation" chemo to prepare him for a bone marrow transplant. We're hoping my sister Meryl or I will be a perfect match donor, which is his best hope for a complete cure.

Some doctors make terrible patients, but not Gil. He is the perfect patient. Always considerate and forebearing with his nurses and other caretakers, putting up with what seems like hourly temperature/blood pressure tests, changes of his IV, and awakenings when he's sleeping, always positive, never complaining. He's an amazing guy. Nevertheless, we want him to get well real soon and back to the doctor side of the hospital.