View from Sweetwater's in Ann Arbor

This was my view through the window at Sweetwater's in Ann Arbor as I sat having coffee with two of Marika's teachers from Greenhills (her high school) the other day.

The storefront I was looking at is that of the Downtown Home and Garden Store and the upstairs window boxes are lush with flowering plants this time of year. The morning glories (!) seem particularly happy.

I happened upon Marika and two other students/friends as they were meeting at Sweetwater's with two of their favorite past teachers -- Mr. Randolph (Shakespeare) and Mr. Tobin (College Counseling). During the conversation, Marika pondered (and asked) when they would feel like "adults" and not "past students/kids" anymore.

After several funny and insightful answers, the one that resonated for me was: "When you stop calling us Mr. Tobin and Mr. Randolph, and start calling us Dick and Mark."

And I guess we're/they're all waiting for that day!

Gil is sequestered inside the four walls of our house protecting his fragile immune system from the onslaught of lurking germs. I think I know how the Native Americans must have felt as they fell victim to unknown diseases brought innocently from newly-settled Europeans. Everyone and everything is suspect!

You can't be too careful when you don't have a normal immune response.

Haiku:

Lots to do indoors

But when you're confined inside

You want to go OUT!

Watching Out for Infectious Microbes

We're now on the lookout for marauding microbes!

Gil had his first outpatient appointment with his oncologist from Beaumont today. As expected, his white blood cell count (read "neutrophils") is down to zero.

This means he is susceptible to any and all disease producing elements -- bacterial, viral and fungal. He has no means to fight them off.

He has been started on two oral antibiotics. He is to monitor his temperature regularly and report any elevation above 100 degrees. If any signs of infection occur, we head right back into the hospital for IV antibiotics.

It sounds as if the recovery from this consolidation treatment is expected to take 2-3 weeks. At that time, our Beaumont oncologist will contact our Karmanos oncologist and we should be able to proceed with the transplant.

In the meantime, you know the routine. No visitors. No gardening. No plants or flowers. No raw foods. (Egads! Our tomatoes are ready to be harvested and our oncologist said that raw tomatoes can be laden with pseudomonas!)

So Gil is kicking back and has watched Seasons One and Two of Mad Men and the first two episodes of this season. We eagerly await Sunday night's new episode.

He continues to push his Kindle to the limit!

Haiku:

Keeping free of germs

Avoiding infection key.

Life in a bubble?

Back Home and Unpacked

This was a short stay.

Five days of cytarabine chemotherapy which was 30 times more potent than the original induction chemotherapy treatment ended yesterday. We brought Gil home this morning.

He is feeling remarkably well considering that this round of chemotherapy is designed to kill all the remaining mutated cancer cells.

According to his physicians, he will begin feeling the effects of this latest treatment on days 7 through 14. We are on day 6 today. They say that these consolidation-induced side effects will not be as difficult to tolerate as the previous induction-induced side effects. We're hopeful.

We don't yet know when the bone marrow transplant will be taking place. We do know that Gil will be going to have his blood work checked every few days until the transplant date and will get transfusions as needed on an outpatient basis. He needs to keep an eye on his temperature which will be an early indicator of infection.

On another note, my Book Club group had their annual summer movie night and dinner last night. We usually see something in the "light summer fare" category -- this time, The Time Traveler's Wife -- with dinner for all at CPK afterwards. After sharing information with one another about our lives, and kids, and concerns, I wondered aloud if there would ever be another dinner for all of us that didn't mention health-related issues or concerns for ourselves or our friends or our loved ones.

Marika laments that she only has 17 days left in Michigan before she heads back out to the West Coast for her sorority's rush and the beginning of the fall semester of her Junior year. She's finishing up her summer work in a pharmaceutical research lab at U-M this week and has loved it.

Evan still hobbles on his crutches and spends inordinate amounts of time in the library with his med student friends.

Adam continues to work hard in his third year of PhD work and still finds time to love Laura and Bodhi -- in that order!

I'm girding myself for the upcoming transplant and will hope that when it's all over, I'm not toxic on Karmanos Cancer Center and that I have a fully recovered and life-embracing husband to spend the foreseeable future with.

When he's clearly into full recovery mode, I'll want to look for meaningful work for myself. I don't know about facing another long Michigan winter without a job to head off to each day.

Haiku:

Five days at Beaumont

Not as hard as the last time.

Waiting now ... for what?

Consolidation Therapy

I wasn't expecting to post my blog tonight from room 8495 but here I am.

After our meeting last Friday with Gil's doctor at Karmanos, we were prepared for a bone marrow transplant as soon as the insurance approval could be obtained.

Well, the insurance approval was obtained within 24 hours of the request but something happened in the meantime that was not expected.

Although he remained in remission, his Karmanos team felt it would be best for Gil to undergo consolidation therapy prior to the bone marrow transplant.

"Consolidation therapy is an added treatment given to a patient even after the cancer is in remission. It usually includes chemotherapy drugs not used during induction treatment."

His Karmanos physicians think his leukemic AML-cells need to be hit with a round of a chemo drug that is not part of the transplant chemo regimen. They think that giving this consolidation drug therapy will improve his chances for a successful transplant outcome.

In Gil's case, the added treatment is with Cytarabine (Ara-C) and he got his first of six doses to be delivered every other day this afternoon at Beaumont. He'll be treated as an inpatient for the next five days. Then he is to come back home and "recover" until the team at Karmanos judges he is ready for transplant.

We don't know at this point in time how he'll be feeling at the end of this five day therapy. Will he be feeling sick? What will his energy level be? How will his body handle the immunosuppression issues that will result? How soon can he have the transplant?

These answers are forthcoming.

Gil drove himself in to the hospital this morning and was admitted to his "old" unit on 8 South. All the nurses and staff remembered and welcomed him. I'm sure he had very mixed feelings about being back. He's closer to getting the definitive treatment that can lead to a cure.

There are still may hurdles to come.

Marika and I came in later today and spent the afternoon and evening with him. He was still feeling good when I left him early this evening. His attitude has been very positive these days.

Depending on the events that unfold over the next week, I'll put up more than our weekly post on Fridays. Stay tuned.

Really sooner....

Tomorrow is here before you know it. As it turns out, I'll be readmitted tomorrow for a preliminary course of chemo prior to the transplant. The docs tell me this will last 5 days as an inpatient followed by outpatient follow up. More as things develop.

Gil

Sooner rather than later

I must say the visit with Dr. Uberti was a reality check. I had been looking forward to the stem cell transplant and eager to get on with it so I could resume my normal life. I've been feeling stronger and less of a patient every day, so why not get back to work?

As it turns out, I'd better be thinking of my next step as the transplant, not my next project at work. It is a much more grueling process than I wanted to visualize, although I'm not surprised to hear it. There are lots of variables in recovery depending on how my sister Genie's stem cells react to my body. In the worst case scenario there can be an untreatable reaction and in the best case, there can be no reaction. Although we have a "perfect" match, that is only within the 8 major HLA antigens (I believe that's correct) that are checked. There are dozens of other antigens which aren't checked that may be important.

At a minimum, I can expect to be hospitalized for a month, then followed in the BMT (bone marrow transplant) clinic 2 to 3 times per week for for 3 months. Both the MDs on my Beaumont team and my new MDs on the Karmanos transplant team accelerated the timeline to my transplant to as soon as possible due to the final part of my last bone marrow analysis. My cells look entirely normal but their DNA is not, so my remission will be short lived. The transplant is needed to deal with it, and as soon as possible. I'd been looking forward to a longer vacation from all that.

OK, let's get on with it then!

Gil

PS: the charges from my induction hospitalization totalled $350,000, of which $175,000 were pharmacy charges. How does that relate to the Health Care reform debate? I leave that to you. I'm sure all the charges (what insurance will pay is another matter) from the transplant will be at least that much. Am I worth it?

Karmanos Cancer Center Evaluation

The photos you're seeing above are images of a place and a person we will be seeing a lot of in the next few months.

The first is of the Barbara Ann Karmanos Cancer Center in downtown Detroit where Gil will go for the transplant. The second is of Dr. Joseph Uberti, MD, PhD who is the Co-Director of the Bone Marrow Stem Cell Transplant Program at Karmanos and will be in charge of Gil's care.

The evaluation session today went smoothly and was pretty much what we had been led to expect. Everyone on the team is in agreement. Gil's leukemia requires a transplant to obtain a cure. The Karmanos team is recommending it as the preferred treatment and is proceeding on that basis.

A letter in support of a transplant as soon as possible will be sent by the physician team to the insurance company on Monday. Hoping that the bureaucratic red tape is kept to a minimum, it's "conceivable" that the transplant procedure could be scheduled in as soon as two weeks. The team wants to perform the transplant as soon as our insurance can approve it and before there is any chance for relapse back to the active disease.

The HLA typing results came back and Gil's sister, Genie (in California), is as perfect a match as could be hoped for. Apparently there is no such thing as a "perfect match" and there will be factors in her stem cells that will inevitably lead to host vs. graft (HVG) rejection issues. The team is hoping to keep them at a minimum with steroids and immunosuppressive drugs.

Apparently, there are 19 inpatient beds at the hospital for bone marrow patients. There is a track (?) that patients can use to walk on to stay conditioned and in shape as they undergo treatment and recovery. In-room refrigerators. Family members can stay with the patient for the entire stay if desired. I will stay with Gil at the hospital for the entire treatment period.

Once admitted, we've been told it will take up to ten days for the chemo to eliminate Gil's cancerous bone marrow cells. He will be allowed to recover for a few days and then receive an infusion of Genie's cells. Genie's cells should become productive within Gil's system within a week or so.

The attention from that time forward will be focused on keeping the rejection issues in check. That could mean an easy course of recovery or it could become life-threatening. We were told to be prepared for all possibilities from the best to the worst results. This is not a walk in the park.

The nurse coordinator who spent most of the day with us encouraged Gil to gain as much weight back and to be in the best physical shape possible before he comes back for the transplant.

Next steps:

We will hear from our nurse coordinator when the letter is sent to the insurance company. She will contact Genie to get the required test (CXR, EKG and blood work) results sent to Karmanos. Gil will need further testing to assure his underlying good health.

P.S. We are very carefully following the health care debate these days. Our lives are intricately tied to current coverage issues and we are so sympathetic to persons who are ill and who don't have insurance coverage.

P.P.S. Going off the air again until next Friday. In the meantime, it's calories in and lots of time spent working out for Gil.

Haiku:

Insurance pending

Could they possibly deny

Gil......so deserving?

It's Friday so it must be ....

.... Pizza Night! It's the end of another good week for us.

Since our lives are interesting, but not that interesting these days, I'm going to award myself a one week hiatus from this blog site and take it "off the air" until next Friday night (August 14).

Next Friday is our first appointment with Karmanos Cancer Center in the afternoon. We'll have more newsworthy information then.

All for now. Enjoy your weekend.

Haiku:

Another long week

Being home still feels unreal.

Returning to life.

The Studio Workspace

This is where a lot of Gil's photo work takes place.

Photoshop -- the enormously capable photo editing software program -- plays a big part in bringing Gil's vision of the finished image to completion. Sometimes the image and the artist work smoothly together. Sometimes it's a struggle. Sometimes it works. Sometimes it doesn't. And when it doesn't work, you can feel like you've wasted a whole day.

Gil spent almost the entire day at his desk working on his photos, calibrating his monitor and adjusting his commercial-sized printer so that he can begin printing some of his new photos.

He's excited about a new direction of work he's starting.

We went to Kensington Metro Park today with our folding chairs and the dogs and sat at the lake's edge. Gil read his Kindle and I finished another NYT crossword puzzle. It was relaxing.

Marika heads to Lollapalooza -- an outdoor concert venue in Chicago -- for the weekend with her closest friend, Lindey. It's a girls away weekend for them.

Adam and Laura host Laura's sisters and their spouses in LA for the weekend for a friend's wedding in San Diego on Friday.

Evan tries to survive the final day tomorrow of his first week of med school negotiating it all on crutches. He says it is very "in-elegant" to maneuver around the campus. Only seven more weeks to go as a non-weight bearing ambulator.

My mom is recuperating in the rehab center in Kentucky and the fractured pelvis "is not going to keep me down for long" she tells me.

I'm keeping everyone's schedules up and everyone's anxiety levels down.

Haiku:

Printer cartridge filled

Photo paper loaded up

Time spent is worthwhile.

Gil's Photos

I'm posting two of Gil's photos that are among some of my favorites. He's back to photographing now that he has time to be creative. The first photo is titled In the Garden.

The second photo of the milkweed pods is titled Exploding Pods and was chosen to illustrate a book that a friend/professor who teaches at MIT recently published -- Falling for Science: Objects in Mind; Cambridge, MA, MIT Press, Spring 2008. (I highly recommend the book and you won't be sorry if you order it from Amazon today!)

I love watching the creative process work its way through Gil's mind from idea to completion. He can be absorbed for a whole day with getting the image just right. He loves walking out into nature and collecting seeds and pods and blossoms and nature's interesting "jetsam and flotsam" found in the woods and near the pond at the end of our street.

In addition to working on his photos, he did continue to do his workouts. He went to the Milford High School fitness room today to use the free weights and he rode the stationary bike here at home. He probably ate ten small meals throughout the day

Haiku:

Object(s) found on walks

A composition unfolds.

Image is revealed.

Father-Daughter Time

Well it's Marika writing, the youngest (and let's be honest, most precious) Raff sibling. I can say that over the past eight weeks my dad and I have grown to be as close as a father and daughter can be. I saw him at his best and worst. I was sure to recap my daily adventures in my research lab to keep the outside world present in his daily routine. Not only did I share bits of my day with him, I shared special moments, even giving him a 20 year-old sorority girl worthy nail clip and filing. This task was something that I did without hesitation upon his request only later thinking it isn't generally an experience a daughter has with her father. It made me realize he was letting all his walls down, letting me see every nuance of himself. I will cherish memories like those, no matter how seemingly insignificant, forever.

Now that my dad has been liberated, much like our fellow Israelites released from the Pharoah's bondage, he has settled right back into his old routine. I returned home from a trip to LA to nurse my brother back to health from a knee operation, to find the kitchen in a familiar disarray, only found when my dad has infiltrated it following my mom's meticulous cleaning. Pasta sauce crusting on the kitchen counter, check, noodles clinging for dear life to the side of the kitchen sink and stove, check, parmesan delicately sprinkled on the floor, check.

Happy to have arrived back to Michigan with my dad picking me up from the airport instead of in a hospital bed, I could only smile at this mess and enjoy the nostalgia that resided in me. I graciously got to cleaning the next day and only my dad would afford me that great pleasure twice more in the same day, after lunch AND dinner. Ah yes, I am a seasoned vet at pre-washing, loading, and unloading the dishes. Not to mention irradicating any crusted-on mess gracing the counter top.

As my mom mentioned yesterday, my dad had great aspirations for his not-yet proven lasagna. I was lucky enough to be the first to taste the steaming dish and it looks like we have a new Mario Batali on our hands.

After asking him the level of difficulty he experienced putting it together he answered like a true scientist in a language we both understood:

"It was just like being in the chemistry lab."

" All about following the procedure?" I asked.

"Precisely."

The kitchen re-cleaned for a record fourth time in two days, my job here is done until the next pasta sensation from chef Gil Raff.

Making Lasagna

Gil is being very particular these days about his diet. He's looking for ways to increase his protein intake without eating heavy meat or poultry. He has hit upon pasta as the solution.

Marika woke up late this morning, made her way down to the kitchen and found dried pasta stuck to pots and counters and plates. Clearly her dad had chosen a pasta dish as his breakfast and lunch of choice.

And there was more to come!

"I want to make lasagna," Gil said.

"Dad, do you know how to make lasagna?" asked Marika.

"No. But I found some lasagna noodles in the pantry," Gil replied. "Do we have a recipe?"

"I can find one for you," Marika said as she thumbed through our Joy of Cooking.

And she did.

Gil approved her recipe choice. And sent her out to the grocery where she purchased the ingredients and brought them home.

At the time I am writing this blog entry, we haven't been invited to see or taste the final casserole.

Haiku:

Pasta and a sauce

Add some noodles and some herbs.

Buon Appetito!

Photographer at Work

The light was right early this morning to capture the blooming morning glory. I'll attach the final photo from this shoot when Gil approves it.

It was another good day for Gil as he went swimming, took the dogs for a short walk and worked out on the stationary bike. He rotates his activities and rests a lot in between.

He drove to the airport tonight to pick up Marika from her ten days in LA. Evan is still not recovered enough to get to his classes tomorrow but Marika left him with clean laundry, a fully-stocked refrigerator and plenty of reading material close at hand as he patiently waits to be more mobile.

Haiku:

Morning glory blooms

Closes in the afternoon.

Awaits a new dawn.

Gift Basket Bonanza

A gift basket of food arrived at our home this afternoon.

It was from the staff of the Beaumont Coordinating Center. "Everything that's good that I've been able to accomplish over the past few years in my research has been possible only with the help and cooperation of every member of the team there," Gil said.

(And he sent those exact words recently in an email to the Director of the Coordinating Center to pass along to the personnel there.)

Filled with strawberries, zucchini bread, blueberry muffins, fruit, brownies and popcorn, the basket was a most-welcomed delivery. Thank you.

We had breakfast at The French Laundry in Fenton and we were waiting right there when they opened at 7 am!

I asked Gil what time he had woken up this morning and he said, "5:30 am."

I said, "That's pretty early on a day when you can sleep in for as long as you want."

"I know," he replied, "but I'll be getting up at that time when I go back to work so it isn't a problem now."

(That was heartening to hear!)

After breakfast, he put on his wetsuit top and drove to the high school swimming pool where he used to do his lap work. He says he made it down one length of the Olympic-sized pool before tiring and heading back home.

He's also getting back to his photography work which always makes him feel good. (I'll attach one of his photos to a blog entry this week for you to see.)

Tonight was not the usual "Saturday night out" we're used to, but it feels mighty good just to have him home on a Saturday night again.

Haiku:

Weekend night at home

No movie or dinner out.

Just the two of us.