Back in Another Blue Room at Hotel Englewood

Returning to a community hospital for a week is like coming back to a cheap, somewhat sadistic, motel. I arrived yesterday for the first of four rounds of chemotherapy. I'm in a shared room, although my roommate left yesterday and I'm hoping I can avoid another "guest" in my new blue room. (It's not that I don't like people. I just don't like sick people in my space when I'm already sick and cranky.)

The layout of the shared room is different, but it's basically the same overwhelmingly creepy experience. I try to make it work for me, as we all do when find ourselves with less than comfortable lodging arrangements that we can't change. There is a "housekeeping" department. Someone answers (most of the time) when I call the "front desk." Room service? Hmmm. That's a stretch. Trays of food are delivered on a somewhat regular basis, but the menu is limited and includes a lot of jello. The linens are changed everyday, and "Guest Services," which is actually called "Guest Services," stops in to ask if my stay is comfortable.

Upon arrival, I complained about the squeaky bed, asked for an extension string so that I could control the overhead light, and called the diet office to register my food restrictions – no dairy, no red meat, bottled water with every meal. Then I rearranged the chairs (claiming the recliner for my side of the room, in the spirit of what many office workers do when someone quits or is fired), asked for a second table for my laptop, plugged in all my chargers, ordered TV service, unpacked my suitcase and my carefully chosen "Kathy hospital food" backpack, labeled my grocery bag for the pantry refrigerator filled with almond milk, protein drinks and V8 juices, and settled in. It was nice to get a warm reception from the floor staff. Lots of people were very friendly and helpful, and I'm now able to see their faces without masks.

Englewood Hospital is not a bad representation of such medical "hotels." It's actually one of the better models. Many rate much lower. For a Zagat rated hospital, "reserve a reservation" at the Marburg wing of Johns Hopkins Hospital in Baltimore. It's a 5 star experience, which is why celebrities and royalty pay big bucks to stay there. I know this only because the hospital ran out of beds one time when I had to stay overnight after one of the radiofrequency ablation (RFA) procedures. Until the staff figured out that I was a "non-paying customer," they sent in a food server wearing a tuxedo to take my Tea Time order. But she disappeared before I thought to ask for a crumpet. For the right price, you can order lobster or whatever you crave, and you'll be served your favorite meal on fine china. The furniture is expensive cherry wood, and there's a full service lounge for family members to use, complete with computers and yummy snacks. And of course, there are flat screen TVs. Since I wasn't a paying customer, I doubt if my nurse would have accommodated a request for a foot massage, as she did with the woman down the hall.

Back to reality in the blue room. The chemo doses during consolidation are much stronger than they were during induction. The side effects so far, headache and nausea, are equally more intense. Dr. Forte says that the trick is to find drugs for the side effects that don't cause different, and worse, side effects.

I'll be here until Saturday morning, getting chemo on a Monday, Wednesday, Friday schedule, which is turning out to be a pain in the neck. I had to have a bunch of tests and procedures after I was admitted yesterday, so we didn't get the show on the road till 1:00 p.m. The chemo runs for 3 hours and is then repeated 12 hours later. This meant that I got yesterday's second dose from 1:00 a.m. to 4:00 a.m. this morning. Thankfully, I can just sleep through it and hope that the drugs for the side effects last through the night. At least today and Thursday are days off.

Once I return home, I'll recover for about a week till my immune system crashes and something gives out. Either I'll get sick from a fever or some infection and need to be readmitted, or my blood counts will be too low, I'll need transfusions, and need to be readmitted. Either way, I'm likely to end up back in an all too familiar blue isolation room again, with masks, in the middle of January until my counts climb to a safe level. Maybe it's time to propose a Reward Points Program for Hotel Englewood. I could earn a year of leukemia free test results, which I would then convert to a permanent reward somehow. I'll put that on my To Do list.

Kathy

CANcer + HEALth = CAN HEAL

A Special Christmas Gift

I can't think of anything that compares to the gift I received this Christmas. Dr. Forte gave me something neither one of us knew he had to give: the Gold Medal!

The plan for the next phase of treatment involves 4-8 months of intensive chemotherapy until the upside down chromosome #16, which acts like a marker for leukemia cells, disappears. Whether I receive 4 rounds of chemotherapy or 8 is dependent on the presence of 16i in my bone marrow. As soon as that marker is completely gone, I'll have one last treatment for good measure. Having qualified for the Olympics when no cancer cells were found under the microscope last week, the real competition takes place in the arena of cytogenetics - with chromosomal indicators like 16i telling us who's winning.

After a week of analysis by the cytogenetic experts, Dr. Forte left me a voicemail and an e-mail on Christmas Eve with "super duper good news": No 16i was found in my bone marrow from last week's biopsy at all! It's like the Olympic committee awarded me the Gold Medal now, and as long as I can hang onto it over the next 4 months, they'll let me keep it!

Although I'll still be in and out of the hospital receiving chemotherapy as planned, I will only need 4 rounds, and I won't need as many bone marrow biopsies along the way. The treatment is still necessary to increase my chances of a long term remission, and eventually - wait for it - a cure. I like the sound of that.

I can't wait to ask Dr. Forte in person how often, in his 45+ years of practice, he's seen this happen. I have a feeling I'm part of yet another rare statistic.

I think that the good and the bad of each twist and turn in this bumpy road of mine can be summed up with the question, "How is this possible?" I ask that question again, knowing that the disappearance of 16i at this stage in the game is truly remarkable. I can think of only one answer: the healing power of prayer. Countless people told me that they were praying for me, and I always knew that my voice was not alone. I thank all of you who were in that blue room with me, giving me strength and faith, reminding me to focus on the light rather than the dark. There is no greater gift we can give to each other and I am truly thankful and humbled by the collective compassion responsible for this magical Christmas gift.

Kathy

CANcer + HEALth = CAN HEAL

"Live Like We're Dying"

It's been a music weekend. There's nothing like a good snow storm to inspire me to catch up on some movies, read a good book, or in this case, update my music collection. This morning I heard a song on the radio that I had to download. It's called "Live Like We're Dying," by Kris Allen. When I heard it, I paused, smiled, and nodded to no one in particular.

We only got 86 400 seconds in a day to
Turn it all around or to throw it all away
We gotta tell 'em that we love 'em while we got the chance to say
Gotta live like we're dying

I can't help but notice that many musicians are writing songs that recognize how fragile and fleeting life can be and the need to make the most of the time that we're here. Can it be that in this time of global and personal crisis we are collectively inching our way to the realization that, as my friend Cathie says, we are all on this earth on borrowed time?

You never know a good thing 'til it's gone
You never see a crash 'til it's head on

That says it all - the urgency of the present moment, summarized in two lines of a song. John Mayer recently released "Say," his example of this artistic trend, urging people to live in the Now.

Take out of your wasted honor
Every little past frustration
Take all your so called problems
Better put them in quotations
Say what you need to say
Say what you need to say

Nickelback had the same idea with their song "If Today Was Your Last Day."

If today was your last day and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past?
donate every dime you had?

What if today really was our last day? Why not say what we need to say? Why not live like we're dying? Dying just makes us live harder anyway. Let's take advantage of these art-reflects-life reminders, make the most of our borrowed time, step over our fears and seize the day.

Carpe Diem!

Kathy

CANcer + HEALth = CAN HEAL

"I believe in the faith that can save me."

Again, Bruce's words come to mind.

Today I went for a bone marrow biopsy - my 4th - and a check up with Dr. Forte. I'm so glad that my friend Cathie came with me to share what turned out to be a pretty amazing day. Last week when I asked if I was in remission, Dr. Forte dodged the question, saying that the word "remission" is only as accurate at the tests that are available at the time. I resigned myself to having to wait till the end of the consolidation phase (4-6 months from now) before we would know if we could use the R word.

There are two stages to "remission" in the context of Acute Myeloid Leukemia. The goal of induction therapy - the 6 1/2 weeks of hell that I went through in the blue room - is to achieve a "complete morphological remission" by reducing the amount of leukemic cells to an undetectable level under a microscope; the goal of consolidation therapy is to eliminate any remaining undetectable leukemic cells at the molecular level, so that the flipped out gene on chromosome #16 is no longer found. That's called a "complete molecular remission." It's kind of like qualifying for the Olympics, which is a huge victory in and of itself, and then winning the Gold. Today, I learned that I qualified for the Olympics! The induction treatment that made me so sick for so long worked. I'm in a "complete morphological remission" and I'm not stopping till I win the Gold!

When Dr. Forte told us the good news, there were hugs, tears, sighs of relief, disbelief. I forgot about the pain in my hip from the biopsy. Two of the other oncologists in Dr. Forte's practice who treated me during induction came in to congratulate me. I was again humbled by the realization that so many people are fighting this with me, for me -- my doctors, friends, family, co-workers, people at my church, strangers who read this blog. I'm not used to that. It's a very special feeling.

These last two weeks of freedom have been a gift. Sadie and I have been playing non-stop. I'm getting better. I'm feeling stronger. My recovery symptoms are improving. My days are getting busier and busier as I focus on my health and prepare for what's yet to come. I will begin consolidation treatment on January 4th, 2010. I'll be in the hospital for at least 5 days, I'll come home, and about a week or so later, my immune system will crash again. And so it will go each month. But I have the holidays to rest and heal and remind myself not to take anything for granted. Your belief "in the faith that can save me" is my greatest gift this holiday season.

I wish you and your families love, joy and peace as we celebrate our blessings and honor our connections to one another.

Happy Holidays!
Kathy

CANcer + HEALth = CAN HEAL

"Sprung From Cages on Highway 9"

Sometimes the lyrics of Bruce Springsteen say it all. I've been sprung! (Englewood Hospital is on Highway 4, not Highway 9, but close enough.) I was released on Thursday afternoon, and I'm still a little shell shocked at the reintroduction to my previous world. I owe Jim many thanks for taking time in the middle of the day to move me out of the blue room (it took 5 loads), bring me home and help me settle into the home I left in such a hurry in the middle of the night on October 19th.

Walking out of the hospital, I really felt that I was being released from prison. I spent 46 days - 6 1/2 weeks - being assaulted with toxic poisons that, ironically, saved my life. I underestimated the impact this had on me until the moment I walked back into the world. It was a warm 65 degree December day, with a breeze and fast moving clouds. It was a perfect day. I ditched the mask, took a deep breath and burst into tears. I have never been so happy and grateful. I will never forget the power of that moment.

I'm in awe of the effort that it takes for the body to re-learn basic movements - standing, walking, climbing stairs. I'm still very weak, I need to put on some weight, my stomach has not recovered from all the chemo and antibiotics, and my head feels like it might fall off if I move too quickly, but I'm hobbling around pretty well, albeit slowly.

Sadie has been recovering from her own little female procedure in Hershey, PA, where Mary's friend Karen has been fostering her for the past week. I will get her back on Wednesday, and I can't wait! I can't thank Karen enough for being a 24 hour nurse to my cat, sending me pictures and updates everyday.

I will see Dr. Forte on Wednesday for a follow up appointment. Based on my blood work that day, we'll make a plan for the next step: Consolidation treatment. I'm hoping to get a break till after Christmas, but we'll see. I hate the thought of the upcoming assaults that will bring weakness and possibly other complications, but I also want this to be over with as soon as possible. Right now, I'm just focusing on getting stronger and enjoying every moment of freedom.

Today I had two gifts: my first cup of fresh brewed coffee in 7 weeks, and slushy snow. I know, slushy snow is usually annoying. But to be able to watch nature in action, after staring out of my hospital window at a red brick building for so long, was mesmerizing. I watched the snow all afternoon.

Please know that all your prayers were heard and answered. I've never felt more blessed.

Kathy

CANcer + HEALth = CAN HEAL