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.

Out to Lunch?

Many of you have asked: "Karen, what do you do all day while you're living at the hospital with Gil?"

On this particular day last week, two of my Milford Garden Club friends drove down here to Karmanos and took me and Genie out to lunch at Wasabi -- a wonderful little Asian/Korean restaurant nearby. (Sushi, sashimi, edamame, miso soup -- yum!)

We had a nice, long lunch with lots of laughter and discussion about health care reform and stem cell research -- as you can imagine. (Thank you, Debbie and Nora.)

Gil woke up feeling good again on Day+3 this morning. Waiting for the blood cell counts to "bottom out" (they say any day now) and then begin to replenish themselves using Genie's stem cells as their new source.

As always during this week or so, infection is concern number one and we take all precautions to keep the microbes at bay.

Lots of handwashing and continuous prophylactic IV antibiotics, antivirals and antifungals until the counts return to normal.

At this point, all we can do is keep our fingers crossed that Gil doesn't get an infection while his immune system is depleted. (I find that I'm constantly "wiping things down" with my little Clorox disinfectant wipes -- door handles, light switches, faucet handles, soap dispensers, TV control and computer keyboard.)

Haiku:

Germs are not our friends

Yet how can we avoid them?

They're not welcome here.

A Cautious "So Far, So Good" on Day +2

Gil is smiling. He's just read in the NY Times that Obama has won the Nobel Peace Prize. Well-deserved. It's going to be a good day!

I took this photo at 7:25 am this morning. He's sitting at his computer surrounded by his continuously running IVs and his dry-erase board on the wall behind him where you can barely make out the words "Day One!"

Today is Day +2 (day plus two) since the transplant and this is how Gil and his Karmanos team will count his days during his stay here and in the immediate post-transplant weeks and months ahead.

It's been interesting to learn from the oncology attendings and fellows and pharmacists what we might expect as the days go forward.

Engraftment Syndrome symptoms can manifest themselves in the next 5-8 days. Day +2 is when the expected drop in neutrophils, platelets and red blood cells is expected. That's today. So we wait for the "morning labs" to come back.

When the counts drop to zero, we need to be super-vigilant about hand washing and infection prevention. Fortunately, this unit is HEPA filtered which means no need for wearing masks as staff come in and out of our room and as we walk the hallways.

Genie leaves for California today after having been with us since September 20th.

Obviously, we "couldn't have done it without her!" has much greater meaning than what is usually implied by that phrase.

(Literally, we could not have done it without her healthy, hearty, happy-go-lucky stem cells.)

Marika travels from Santa Barbara to LA for the weekend to spend a few days with her brothers. Evan takes his 6-week rotation exam on the Renal System today. Adam continues working in his lab today pushing his PhD work forward.

I'm going home for a few hours today to visit with our border collies, Haley and Jamie. I'm lucky to be able to take breaks and go home to see the leaves turning and check on things.

Mainly I'm happy staying with Gil, reading my latest book for Book Club (The Girl with the Dragon Tattoo), searching on the computer for all sorts of information about stem cell transplants, and being a most loving wife.

(Fingers crossed for a relatively mild recovery period.)

Haiku:

World peace advocate

Obama gets recognized.

Today who could ask for more?

Transplant Day Arrives

Some days you wake up at 7 am, take a shower, go to work, come home, make dinner and go to bed.

And then there are the rare days when you get up at 7 am, head to your nearest cancer center to donate your stem cells, and save a life.

Genie saved a life today.

And she was a real trooper! She arrived at the pheresis lab at 8 am this morning "ready, willing and able" to do whatever was asked of her. After lying in bed immobile for nearly six hours, the collection was complete and it was time for the team to literally walk the cells down the hall to her waiting and grateful brother.

(Afterwards she was told that she had done her job so well that she provided enough stem cells for two recipients!)

At exactly 4:48 pm Eastern Standard Time, Gil received the new stem cells in a simple and quietly profound transfusion that will change his life forever.

No time was wasted -- the cells were in within 30 minutes.

What happens next?

Genie's stem cells will course their way through Gil's body and find their way to his bone marrow. His own marrow cells were completely destroyed with the most recent round of chemo. As Genie's cells take up residence in Gil's marrow, Gil begins the next phase of his recovery which is called engraftment. (A friend suggests "eng-RAFF-ment.")

There will be side effects that are expected during this phase of the recovery process.

Gil is feeling good today with only a few episodes of discomfort. His team tells him he is doing extremely well at this stage of things and we are encouraged.

Haiku:

Long awaited day

Godspeed to these new stem cells.

Go find your new home.

A Picture's Worth.....

A picture's worth a thousand words!

This photo was taken last fall as Gil and I were walking down our street with the dogs. I brought a digital photo frame into our hospital room for this admission and loaded lots of photos of days like these -- our fall garden, our house in all four seasons and family gatherings just to remind us what awaits us when we get home.

Today is Day -1 (day minus one) which is designated a "rest day." It is a day without chemo and it gives Gil's body a chance to clear all the chemo agents from his system. So far, he's feeling good and has not had any side effects from the chemo or immunosuppressive drugs he's been given.

That said, I guess one of the "side effects" of this hospitalization has been overwhelming boredom. We brought books and DVDs and an MP3 player and a laptop. Even so, there are so many hours to fill in the day.

And the same four walls -- egads! There's only one window to look out of from the hospital room where the view, though expansive, never changes!

I'm wondering if those of you who visit this blog site might do us a favor. (You're always asking what you can do!) Can you take a new photo or send an existing photo from your collection and attach it to an email that shows what you're up to these days? A walk in the woods, a trip to a cider mill, a tree changing colors in your yard, a fun event?

It seems like a good way for Gil to "get outside" without being able to "get outside." Choose something that happened to you. Something that has a story. And tell us about it. Thanks.

We are biding our time until tomorrow between 2:30 and 4:30 pm when Genie's stem cells will be infused into Gil.

(Perhaps we will view some of your photos in our email.)

Send to both of us if you would:

karen.raff@gmail.com

gil.raff@gmail.com

I promise another blog entry tomorrow evening after the transplant.

It will begin a new chapter in Gil's life.

The Countdown Begins

You're looking at the inner courtyard that weaves behind the hospital campuses including Karmanos Cancer Center where Gil is a patient. Long walks along the paths today help remind me that fall is in the air and that the seasons will go on -- regardless of whether we are at home or in downtown Detroit looking out from hospital windows on the tenth floor. We have magnificent views from up here.

The countdown to Transplant Day began yesterday when Gil was admitted. The team here designated Gil's first day on the unit as Day -7 (day minus seven) -- seven days until the day of transplant.

The day of transplant is Day 0. (Next Wednesday, October 7th)

Then it's Day +1, Day +2 and on from there.

He got his first chemo doses today and he feels fine. He's been encouraged to walk laps around the unit to maintain his conditioning and although it's a bit boring going around in circles, we've met the most wonderful patients and their family members while out walking the floor!

It's only been 24 hours since we've been here and I'm wondering how he's going to be satisfied in this small but perfectly outfitted room for another three weeks? He seems to be happy with reading and computing and napping and thinking.

We've met a lot of other transplant patients (there are 19 of them on this unit) in various stages of pre-transplant chemo or post-transplant recovery and they're all sharing their incredible stories with us.

I hope we'll have an incredible story to tell as well.