Dinner at Cinco Lagos

Here we are with friends at Cinco Lagos in Milford for dinner this past Friday night. What a fun evening! These are friends who are part of our Performance Network theatre-going group during the fall and winter months. (Gil and Genie are standing.) We have a series subscription but will be missing the first couple of plays this year until we can get back to a healthy state.

We've had a little hiccup in our hospital admission plans. Some of the test results weren't back in time to give clearance for the transplant (a technicality but a necessary one), so we've been reassigned a Wednesday admission instead of tomorrow (Monday).

It gives us two additional days to:

(1) Pack more stuff in the suitcase.

(2) Worry. Worry. Worry.

(3) Breathe. Breathe. Breathe.

(4) Find ways to distract/entertain ourselves as we wait ......... patiently.

We're planning a trip in the next couple of days to one of the cider mills in the area for cider and doughnuts. It's what people in Michigan do this time of year.

Will post another entry on Wednesday or Thursday when we've gotten ourselves settled at Karmanos.

Genie Arrives!

Happy brother and sister. Grateful recipient. Generous donor.

Genie arrived from California on Sunday afternoon. Monday was a day of rest getting used to the changed time zone. Tuesday was spent at Karmanos while Gil and Genie got blood work and other tests completed so they could be cleared for the upcoming transplant procedure. (They both passed!)

Gil goes in to Harper Hospital tomorrow (Friday) morning at 5:30 am (!) for placement of the three-lumen Hickman catheter through which he'll receive the chemo drugs and immunosuppressives and antibiotics and antifungals and antivirals and blood products as needed during his one month stay. He'll be discharged after the line is secured.

He'll come home for the weekend.

He'll be admitted for the transplant to Karmanos early next week. We had a tour of the unit and the room he'll be staying in. It's bright and fresh and modern. A very appealing place if you have to be a patient for a month.

Because the unit is devoted to bone marrow transplant recipients, the entire floor and each patient room is HEPA-filtered which means the air is constantly cleaned and recirculated and no one needs to wear a mask on the unit. Of course, no flowers or raw foods or sick people can be on the unit as they try to protect the immunosuppressed patients.

I'm planning to stay with Gil in the room at Karmanos. I'll also have a small studio-style room nearby (a short walk on the Karmanos/Harper/Hutzel campus) so I can have a place to shower and hang out while Gil is taking those inevitable naps during the long days.

Genie will divide her time between the Milford house where she can take care of the dogs and have her own space, and the hospital where she'll visit with Gil and prepare for her part of the transplant procedure.

During these next few weekend days, we're treasuring our time together, taking care of business and deciding what to pack in the suitcase that we "can't live without" for the next four weeks.

Fall Leaves and the Transplant Schedule

This is a photo Gil took last year as fall leaves covered the ground. This year he'll watch the leaves turn colors through his hospital window on the world.

His transplant schedule looks like this:

September 22: Meet with Karmanos Cancer Center team all day for final planning

September 25: Go to OR as an outpatient at Karmanos for central line placement

September 28 (aka Day-7): Admission to Karmanos

September 29 (aka Day-6): Busulfan and Fludarabine IV chemo

September 30 (aka Day-5): Busulfan and Fludarabine IV chemo

October 1 (aka Day-4): Busulfan and Fludarabine IV chemo

October 2 (aka Day-3): Busulfan and Fludarabine IV chemo, Tacrolimus and Cellcept.

October 3 (aka Day-2): Busulfan and Fludarabine IV chemo

October 4 (aka Day-1): Day of rest from chemo

October 5 (aka Day 0): Receive Genie's stem cells today!

October 6 (aka Day+1): Remain in hospital until counts are stable

October 7 (aka Day+2): Remain in hospital until counts are stable

October 8 (aka Day+3): Remain in hospital until counts are stable

October 9 (aka Day+4): Remain in hospital until counts are stable

October 10 (aka Day+5): Remain in hospital until counts are stable

October 11 (aka Day+6): Start Neupogen for a few days to increase counts

Home?!?

Haiku:

The countdown begins

On a path of no return

Waiting to be well.

A Very Happy Birthday Indeed

Yesterday (Sept. 17), was my father's birthday and so, in honor of this occasion, I flew out to Michigan for a few days of relaxation with the folks. The last two times I had visited, my Dad was still in the hospital, which is no substitute for him in his natural environment. This time, he was feeling good and at home, in between his last round of chemo and the upcoming chemo/transplant. Perfect time to catch up!

The timing of this trip was also fortuitous because I was the only house guest (a rarity these past few months). I believe the last time I enjoyed a weekend with my parents alone was when I was one and a half years old, before my brother was born. Let's just say the conversation this time around was a bit more stimulating.

My father's birthday celebration was exactly what the doctor ordered - low key and relaxing. We started off with breakfast at The French Laundry, a Raff family favorite, and ended with a long, delightful dinner at The Grange with family friends. In between meals, we were treated to picture perfect weather that rivaled Los Angeles and a fatherly fashion show of birthday gifts (Gil sports a new shirt in the photo above). All in all, a wonderful end to a topsy-turvy year.

The remainder of the trip has been filled with all the little things I love about being at home with my parents - walks with the dogs, book recommendations, matinee movies and, of course, extensive discussions on the current state of the health care debate. It has been a real treat for me to be at home with just my Mom and Dad and reconnect. These are the moments I cherish and will continue to remember long into the future.

Looking ahead, my Dad has a lot of appointments quickly filling his schedule. On Monday, my Dad's sister - Genie - returns as the "perfect bone marrow match" hero. Soon thereafter, my Dad will re-enter the hospital for another round of chemo, this time preparing his body to receive the stem cell transplant. Once he receives the transplant, my Dad and his physicians will be working hard at promoting engraftment and minimizing complications. Clearly, there are a lot of unknowns but we are supported by the strength of friends and family and, as always, we are hopeful and optimistic.

Your guest blogger,

Adam

A Father's Advice

This cartoon is appropriate for tonight's blog entry because the "son" (Adam) is coming to Michigan tomorrow to spend time with his "Dad" and share some good times and sage advice.

Some things change. Some things never change. Our relationship with our kids never changes. We've always been a close and tight-knit family. We continue to be now.

Adam will be here with us for the next four days.

Gil got word yesterday from Karmanos that the transplant schedule has been set.

Genie will come to Michigan this Sunday. The following week will have her getting the necessary tests to assure she is a healthy donor. She will get Neupogen -- just as Gil did -- to stimulate her own bone marrow to produce lots and lots of healthy stem cells. She will stay during the week that Gil starts his chemo so she can provide the cells when Gil is ready to receive them.

(Donors no longer need to have a bone marrow aspiration to harvest the stem cells. It's not done that way anymore. Stem cells are collected via apheresis and it's as simple as donating blood at a Red Cross center.)

Gil is getting his own testing done this week -- echocardiogram, pulmonary function studies, bone marrow biopsy -- so he can be admitted to Karmanos the week of September 28th.

From that time forward, things will go quickly. Five days of chemo followed shortly thereafter by the stem cell transplant. Beyond that, we don't know what to expect. (We know what we're hoping for!)

We'll stay in touch.

Haiku:

Two more visitors

Expected in the next weeks.

Family comes through!

Dinner at Grange

Marika and I had dinner at the new restaurant Grange in Ann Arbor last night as an end-of-summer treat to ourselves. The food was fresh and amazing. Lucky Ann Arborites!

We brought Gil home from the hospital today after four days of treatment for his fever. His counts are coming back up to normal and his next contact with the oncologists should be his transplant.

Today we got a call from our nurse coordinator at Karmanos who suggested that Gil might be getting his transplant in three weeks. In the meantime, there are tests to be completed for Gil and his sister, Genie. He can once again spend time outside the house where he was captive for the past two weeks. I don't know what he wants to do first!

Adam tells us that one of his manuscripts, co-authored with Laura, has been accepted for publication into The Journal of Immunology. (He's getting closer to getting his PhD!)

Evan tells us he will be totally off his crutches within ten days. He is transitioning back into the world-of-the-walking and he's swimming, among other things, to make his knee stronger.

Marika leaves to go back to Santa Barbara tomorrow. We're packing and doing laundry and reminiscing about how the summer has evolved. She arrived here exhausted from college finals on June 11th and her Dad was diagnosed with leukemia just four days later on June 15th. Our lives have not been the same since that day. I'm grateful that she was here for us this summer.

We're on hold until things start revving up for the transplant. If Gil has the energy, we'll try to plan some social events with friends during these next few weeks.

Haiku:

Second homecoming

On a glorious fall day.

Glad to have him back.

Labor Day Ends in the Hospital

The best laid plans....

We were all set for a Labor Day cookout with bratwurst and potato salad but it didn't work out that way. A midmorning fever sent us to the hospital for an admission to deal with infection. An antibiotic. An antifungal. An antiviral.

Fortunately, Gil is in good spirits and has a thick book to read -- Shantaram -- a recent recommendation from one of my Book Club friends.

He'll stay in the hospital until his white cell count is back to normal. He's starting at the lowest possible level -- 0.4 -- and he's getting Neupogen again which will stimulate the white cell recovery with a kick start.

More as things develop.

Haiku:

We need a raincheck

Our plans were interrupted

No cookout for us.

Tomatoes, Anyone?

You are looking at one day's harvest from our four tomato plants -- an Early Girl, an heirloom Yellow Pear and two grape varieties.

Unfortunately, Gil is not allowed raw vegetables so these sit on the kitchen island and "tempt" him. We'll thumb through our cookbooks looking for unique tomato sauce recipes tonight. As long as it's cooked, it's fair game for him.

I am sitting in Room 9601 at Beaumont at I write this today. Gil has been admitted for the day to get one unit of platelets and two units of packed red blood cells. Since each is to be infused over several hours, we probably won't be leaving to go home until well after dark.

The saddest part is that we arrived at 9:00 o'clock am this morning and it is now noon and we are STILL waiting for the lab to come up and draw a type and crossmatch for the blood products. Once that is sent to the lab, the blood bank has to do its job of getting the compatible blood products for infusion. Only then can the transfusions begin.

We are armed with three newspapers, both our computers, Season One DVD discs of Mad Men, the third in the Francois Truffault trilogy following Antoine Doinel (called Stolen Kisses), today's NYT crossword puzzle, this month's selection for my book club's September discussion (The Help) and a stock market trading book for Gil.

We are getting very good at waiting!

Marika is heading back to school a week from tomorrow. Lots of packing and thinking about what the bare necessities are for a 10 foot by 10 foot bedroom in a three-girl apartment space. And, of course, the always difficult fashion decisions! (I'm vicariously enjoying every minute of it!)

Adam is steering clear of the LA fire's smoke and haze. He's coming to celebrate his Dad's birthday here in Michigan on September 17th for a few days. USC's first home game of the season is tomorrow. Adam and Laura are two of the Trojans' biggest fans and will be there in the stadium with the rest of the student body.

Evan is taking his exam on the cardiovascular system today with his med school classmates after six weeks of learning how to read EKGs among other things. (I told him to do his cardiologist Dad proud on this body system!) Evan is just finishing his sixth week on crutches and has a follow-up appointment with his orthopedist this coming week.

All for now. Have a great Labor Day weekend!

Haiku:

Long three day weekend

Honoring all who work hard.

Rest. Relax. Enjoy.