Milestones

As I watch the leaves turn bright autumn colors, I can't believe it's November.  This time of year marks a series of milestones for me.  Since 2000, it seems that September and October are the biggest months for cancer diagnoses, relapses and other really bad news.  In the last year or so I went through a downward spiral involving my original diagnosis, Adenoid Cystic Carcinoma of the Breast (ACCB).  A few weeks ago I went to Hopkins for a cryoablation on a growing metastatic lung tumor, which I spoke of in my last post.  Cryoablation differs from radiofrequency ablation in that it uses gas to form a ball of ice that freezes the tumor rather than burning it.  The procedure went great, but since the pleura is made up of lots of nerve endings, I have varying amounts of pain in my right shoulder, wrapping around to my chest.  It's very similar to the pain I still have on my left side from the lung surgery in August 2012, so at least I'm balanced!

Aside from this one tumor, I received unexpected good news in mid July:  Somehow, several more tumors in the pleura slowed to a crawl, leaving me with a surprising case of cancer-roller-coaster-whiplash.  Now, with the cryoablation out of the way, I have a reprieve from any more medical drama until the next set of scans in mid January. 

This luxury allows me to reflect on the biggest milestone of all. November 17th is the third anniversary of my stem cell transplant for Acute Myeloid Leukemia (AML) and the birth of my new immune system (and if my theory is correct, the reason for the recent slow down of ACCB).  I remember the Thanksgivings I spent in hospitals, the setbacks, the delays for returning back to work, the life threatening infections and brutal medications.  But now that I'm able to experience the beauty of this season as an AML survivor in remission, it seems like a lifetime ago. 

Every Saturday, as I speed my way through Maplewood trying to get to the recycle center before it closes, I pass the Fire Department with a sign on the lawn that says, "It's In Their Blood."  It's such a great double message; I would always smile to myself and make a mental note to stop there one day to explain why.  Today I stopped and rang the front door.  It is well documented that many men and women in civil service professions such as firefighters, police officers and the military are donors for stem cell transplants (also referred to as bone marrow transplants since stem cells create bone marrow) through the Be The Match registry.  The two men who opened the door were no exception.  After thanking them and their fellow firefighters for joining the registry, they said that it's just part of what they do.  I said that because what they do is "in their blood," it's now in my blood too, quite literally.  Since I have never received a response from the letters I wrote to my donor, it felt good to share a little gratitude with others whose generosity may someday save someone's life.

Since my season of milestones is also the season for giving thanks, I've been thinking about the many things we take for granted and how easy it is to forget to be grateful for the basics.  I do it all the time.  I'm so happy about the big picture, I often forget about the much smaller picture -- getting one's body to do what it's told to complete the simplest of tasks.  I just finished reading an amazing book, which I learned about from Jon Stewart (I never miss The Daily Show on Comedy Central).  It's called The Reason I Jump:  The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida, published in 2007, translated from Japanese this year.  This is one of the most profound books I've ever read.  Barely over a hundred pages, this 13 year old boy made me think about every aspect of life in a new way.  His pain, love and purity of heart stopped me in my tracks.  The book explores a series of questions to help the world understand what it is like to be autistic:  "Why do you ask the same questions over and over?"  "Why don't you make eye contact when you're talking?"  "What is the worst thing about having autism?"  and "What's the reason you jump?"

During this amazing season of nature's transitions, one question seemed especially relevant:  "Why do you enjoy going out for walks so much?"

When we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged.  However often we're ignored and pushed away by other people, nature will always give us a good big hug, here inside our hearts.

I don't have any kids.  I don't even know anyone with an autistic child.  But I don't have to in order to appreciate the magnitude of this boy's challenges and wisdom.  As we move through this time of gratitude and Thanksgiving, let's all celebrate the milestones and give each other a good big hug.



Kathy
CANcer + HEALth = CAN HEAL

N=1 When Science Meets Faith

I've never been good with math.  Algebra and geometry were dreaded subjects.  I picked my college major based on how few math and science classes I needed to graduate (sociology).  When I got to graduate school, there was no avoiding statistics.  I honestly thought I had gone to hell.

You may recall in a recent post I described how, after a year of bad news after bad news, an RFA procedure that was scheduled for July 17th was cancelled at the very last minute.  The numerous lung tumors, old and new, that were detected on a scan in early June were either shrinking or no longer active, and Dr. Hong felt that there was nothing problematic enough to treat.  This was a mind-blower, to say the least.  The prior seven months had been a race to keep up with the increasing speed of the Whac-A-Mole treatment plan my team and I put into place.  Since then I have been straining my non-scientific brain to come up with how this reversal of fortune could have happened.  I was thrilled, grateful and confused all at once.

Several people told me not to question what seemed to be a miracle.  I'm of the mind that the word "miracle" is overused, and I wasn't quite ready for that conclusion.  One thing I've learned is to expect the unexpected.  Another bad scan and there goes the miracle.  But those that said it was the hand of God had a point.  I knew that a lot of people have been praying for me for a very long time.  I've been praying quite a bit too, believing strongly in this power.  How can I not, after everything I've been through?  But something told me that there's more to it.

I looked for something that would clinically explain how the cancer not only slowed down, but took an about face.  I decided to wait for the next scan to test my long shot theory, and yesterday I got the confirmation I had been hoping for.  The PET/CT showed only one "hot" spot in my upper right lung, and nothing else that looks like cancer!  I went over my list of body parts that have been treated since January:

• right hilar lung tumor in a very dangerous spot, treated with RFA and later with radiation -- check!
• right kidney tumor, treated with cryoablation -- check!
• left rib tumor, treated with one big dose of radiation -- check!
• a bunch of new and old lung tumors, growing in the lining of both lungs (planned to treat with RFA) -- except for the one hot spot, all stable, shrinking or no longer active!

Dr. Hong actually said I was "nearly disease free."  My cousin, Karen, was there as a witness.  I told him of my long shot theory and he agreed that it made sense.  Here it is:

I've written a lot about graft vs. host disease, or GVHD -- the rejection process that occurs when someone gets a stem cell or bone marrow transplant from a donor.  GVHD hit me hard almost immediately after my transplant and kept knocking me down for 1.5 years.  The good news is that having my new immune system fight me, the host, meant that it was also fighting the leukemia, a process called graft vs. tumor.  So far, science has shown that getting a transplant for a blood cancer usually never works for also treating a solid mass cancer in the same person.  Usually never.  My theory is that graft vs. tumor is giving both leukemia and ACC a smack-down.  This is the only clinical explanation for what is happening. 

Adenoid Cystic Carcinoma is a very rare cancer, afflicting only 1,200 people a year.   Leaving aside the very few patients like me, who have this initially appear in the breast, I haven't found anyone with ACC who has also had a stem cell transplant from a donor.  N=1. 

On the other hand, why did this smack-down only start this summer when my transplant was 2.5 years ago?  I was on steroids and other immunosuppressants for the first 1.5 years to treat GVHD.  My immune system couldn't even ramp up to normal until these drugs completely left my system.  Plus, ever since the transplant, I take a really long time to heal.  I'm still suffering from Post Thoracotomy Pain Syndrome from the lung surgery I had 13 months ago.

Yes, the scan yesterday wasn't totally clean, but I'm a long way from where I was earlier this year.  (I'll have a cryoablation on the hot spot sometime before the end of the year.  There's no urgency.)  Even if graft vs. tumor doesn't shut down Whac-A-Mole long term, my experience still shows a smack-down.  The evidence supports the theory, regardless of what happens in the future, and I plan to share it with the researchers of the ACC clinical trials and anyone else who will listen.  I'm convinced that there is a connection between ACC and treatment(s) for Acute Myeloid Leukemia.  Maybe this connection will lead to something, anything, that might contribute toward a treatment for a group of people and their families who are going through unthinkable suffering.

Although my doctors all agree with my theory, none of us saw this coming.  Not with my history.  Enter, the power of prayer.  I believe that prayer allowed graft vs. tumor to fight the huge amount of cancer that was found over the last year.  Science and faith are not mutually exclusive.

N=1 is not as lonely as it sounds.  It's actually simple but powerful math, inspired by simple but powerful prayers.

Kathy
CANcer + HEALth = CAN HEAL

Hall of Fame: An Angel Earns Her Wings

Sometimes words just don't exist for life's curve balls.  Emotions get all jumbled up and impossible to process.  I've occasionally referred to a ten year old cancer fighter, Mya Terry, who recently underwent her third stem cell transplant, asking for your your prayers and positive thoughts (see 9/28/12 and 11/22/12 posts).  On April 10th, Mya's suffering ended and this little angel earned her wings.

When Mya was five, she was diagnosed with Non-Hodgkins Lymphoma.  After two years of chemotherapy and radiation, she might have been considered cancer free.  But before she could catch her breath, she was diagnosed with Acute Myeloid Leukemia (AML), just like me, caused from the chemotherapy she received for the first cancer, just like me.  She quickly received a stem cell transplant from a donor, but within a few months, she relapsed.  After receiving a custom made regimen to get her back into remission, she suffered multiple organ failure, causing the second transplant to be delayed.  She finally received the second transplant from a different donor in October 2011.  Everything was going well until she relapsed again last summer.

Mya returned to St. Jude Children's Research Hospital in Tennessee and received her third transplant, this time from her parents, last September 2012.  Her struggle to remain in remission was surpassed by complications from the treatment -- again, multiple organ failure.  Keeping a 24 hour vigil for months in the ICU with the medical staff, Mya's family did everything they could to bring a sense of normalcy and hope to Mya and to themselves. The day before Mya was scheduled to return to New Jersey via Medivac, she rallied one last time to share precious moments with her parents, and slipped away.

I spoke with Mike and Kelly Terry over the phone just before Mya's last relapse to discuss the prospect of interviewing all three of them for a writing project.  I was referred to them by friends, Matt and Jodi Savare (Matt is also a co-worker).  Their son, one of triplets, was diagnosed with another form of leukemia (Acute Lymphocytic Leukemia, or ALL) when he was two and a half years old.  I have been following Mya's story on her CaringBridge webpage, where Kelly kept everyone informed with moving and informative posts on Mya's journey.  These posts were so important to me, I had to remind myself that I never actually met anyone in the family.

When I heard that Mya had taken flight, I was relieved for her, and devastated for Mike, Kelly and their son Michael, who was closer to his sister than siblings can ever be.  The chances of a cure from AML get smaller with each relapse, so I can't say that it was a shock.  But Mya's spirit was so strong....  It was as though the world wasn't quite ready for that much goodness and love.  And yet, it was.  As the Terrys write:

Some of [Mya's] legacy efforts include St. Jude spokesperson at TUMI General Managers Conference in Long Branch, NJ; modeling for Back to School edition of the Money Saver Magazine; featured hero of the Leukemia and Lymphoma Society Pennies for Patients spokesperson; and Team Lead for Relay For Life.  Mya performed as a guest chef at Nicholas in Middletown NJ;  Ragin Cajun in Belmar, NJ; Tommy’s Coal Fire Grill in Oakhurst, NJ and was a St. Jude Executive Chef Assistant at Thanks and Giving Campaign Editor’s Conference in New York, NY....

Mya enjoyed being part of the Girl Scout Troup 100, Swimming, Playing Soccer, all things technical like her Iphone, Ipad and movie creating, crafting, cooking, gardening and riding her bike.  Mya received the Kohl’s Cares Awards:  Store Winner and Regional Winner in 2012.  Her philanthropic activities include:  Mya’s Mommy Bags, Bone Marrow Swabbing Drives; annual Blood Donation Drives and the Mya Sent Me - Pay It Forward/Random Act of Kindness Movement.  Mya aspired to attend culinary school and open a restaurant, to become an oncology nurse and a veterinary volunteer. 

Perhaps the most amazing thing I learned the weekend that I attended the visitation and funeral (where I finally had a chance to meet Mike and Kelly), was that Mya published a book called "The Day I Got My NG Tube."  Instead of writing a book on princesses or shopping or dolls, as you might expect of a ten year old, she wanted to help other kids who might be scared of getting a feeding tube.

The outpouring of support, grief and the need to pay tribute by the New Jersey shore community was like nothing I've ever seen.  I arrived at the funeral home ten minutes after the visitation started and had to stand behind at least 100 people to get in.  More than 150 were still in line when I left -- a sea of purple for Mya.  Most of the eulogies given at the funeral were given by children, telling us how Mya changed their young lives.  It was heartbreaking and beautiful all at the same time.  A few days before Mya's passing, I heard a song on the radio by The Script that could have been written with Mya in Mind:

"Hall Of Fame"

Yeah, you can be the greatest
You can be the best
You can be the King Kong banging on your chest

You could beat the world
You could beat the war
You could talk to God, go banging on his door

You can throw your hands up
You can beat the clock (yeah)
You can move a mountain
You can break rocks
You can be a master
Don't wait for luck
Dedicate yourself and you go and find yourself

Standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame

You can go the distance
You can run the mile
You can walk straight through hell with a smile

You could be the hero
You could get the gold
Breaking all the records they thought never could be broke

Yeah, do it for your people
Do it for your pride
How you ever gonna know if you never even try?

Do it for your country
Do it for your name
'Cause there's gonna be a day...

When you're standing in the hall of fame (yeah)
And the world's gonna know your name (yeah)
'Cause you burn with the brightest flame (yeah)
And the world's gonna know your name (yeah)
And you'll be on the walls of the hall of fame

Be a champion, be a champion, be a champion, be a champion
On the walls of the hall of fame....

The essence of Mya Terry is best summed up in the message with which Kelly signed most of her posts, "N.E.G.U.!," Never Ever Give Up!  Mya never gave up.  I'm not giving up.  I've never met a cancer survivor who didn't fight like hell.  Cancer may take some, but it's warriors like Mya who give the rest of us the strength to keep fighting.

Stay tuned for more information on the foundation that will soon be set up "that will Pay It Forward to other research foundations, other smile foundations, other families, and other care centers" in Mya's honor.  In the meantime, remember this little girl and be a champion.

Kathy

CANcer + HEALth = CAN HEAL

New Year, New Challenges, New Spin on Life

I'm back in the fast lane, and I'm not about to brake, or break!  I made it through the Holidays with as much happiness, gratitude and happy celebrations as I could have hoped for, and I returned to work after being out for 15 long months.  I went back to the firm on December 15th and enjoyed easing back in during a relatively slow time.  Life is full tilt now, and the shift in focus is a welcome change in lifestyle.  Working again was disorienting (they moved my office), wonderful and very much like coming home to a welcoming family.

I notice that working full time is really cutting into my free time, however.  I've been working from home one day a week to give myself a break and a chance to stay in my pajamas, and that seems to be working pretty well.  I may be in the fast lane but I'm trying not to speed.  Recovering from a transplant is such a slow process, I was nervous about returning too soon.  I may not truly be ready for prime time for, well, who knows how long, but in mid December, it seemed that my medical dramas were stable.

But no.  A week after returning to work, a lingering on-and-off cough that has been hanging around since the summer became much worse, and I've had trouble breathing since before Christmas.  I tried over the counter drugs, but as the New Year approached, I could barely breathe.  I've seen my doctors three times since then, I had a CT scan that showed lots of inflammation, presumably from an infection, and I finished a two week course of three drugs.  I'm now on an inhaler, which helps a little.

It's another Mystery.  First I had the Mystery Rash a month after the Labor Day lung surgery, then I had the Mystery Headaches, and now the Mystery Lung Infection.  The first two resolved, over time, on their own.  I'm confident that this will too.  I'll find out the results of a pulmonary function test (which measures lung capacity) later in the week, and we'll go from there.  At least there's no cancer, no GVHD, no masses.  And breathing is overrated anyway.  Just keep going and carry lots of cough drops.

My other recent adventure is a little more interesting.  Dry eyes is a very common condition in Transplant World for those like me who have had chronic GVHD.  My doctor saw that I was a dry eye sufferer and suggested I get some bloody eye drops.  Sounds obvious, right?  The term is not used as in "Where are my bloody keys?" or "Oh, bloody hell!"  No, he was referring to specially compounded eye drops that are made from my own blood.  They're called autologous serum eye drops.

"Who thought of that?" was my first response.  I pictured a bunch of drunk interns at a bar brainstorming about side effects....  Oh what the heck, what's another $180 if it makes my eyes feel better (no surprise that Aetna didn't have a pharmacy code for my blood)?  First, I had 18 vials of blood taken, which was tested for a bunch of viruses.  Then the specialty pharmacy spun off the red blood cells and added some saline to the fluid that was left to make 15 little bottles of eye drops, which I have to keep frozen and thaw out one at a time.  This batch should last me a good 4 months.  They really help! 

I hear many people predicting a tough year.  Tough is relative.  It all depends on your spin on life.  Confronting challenges I couldn't have imagined over the last two years has left me a little jumpy, it's true.  Lately, my blood tests have been coming back with false platelet readings.  Three weeks in a row they showed a huge drop, which can only mean very bad things.  It turns out my blood clumps in a certain type of tube and messes up the platelet count.  My platelets are great and I'm so firmly in remission it's not even funny.  But calm I was not, especially the first time it happened.  During those moments of panic, I did manage to sort my priorities quickly.  All I cared about was keeping my promise to my godson to take him and his mother to dinner in Times Square for his 12th birthday before they went to see Spiderman Turn Off The Dark on Broadway.

My visit to The Dark Side (Spiderman notwithstanding) was thankfully brief, as the true blood counts came back in just a few hours.  But still, when faced with a horrible possibility, what could be more important than making a wonderful kid happy on his 12th birthday?  Nothing was going to keep me from New York that day.  We all had a fantastic time.  It was a great night and a great start to the New Year.

Niki, Victor and Kathy January 5, 2012

I may not be over my Mysteries, but I'm back to work and I no longer view the world from a recovery perspective.  I have high hopes for 2012:  health and strength for me; jobs, healthcare and plenty of food for all who need them; more GOP fodder for the late night comedians; a spectacular new album and tour from Bruce Springsteen; an election that turns out the right way....

Yes, it all depends on your spin.  Happy New Year!

Kathy
CANcer = HEALth = CAN HEAL

Finish Lines

It's the season for finish lines.  The New York City Marathon is today.  Over 47,000 are expected to cross the finish line.  October was Breast Cancer Awareness Month.  Lots of walks and races for that.  And there were two very successful, rewarding and important Light The Night Walks on October 15th with Lowenstein Sandler teams in Morristown, NJ and in Palo Alto, CA.  Those were great finish lines.

  The NJ/NY team surpassed our goal of $8,000, raising $9,158, and the Palo Alto team overshot their $500 goal, raising $708!  I'm so proud at everyone at the firm who worked so hard to make this happen.  From the generous donations to the pizza party, bake sale, and countless paper balloons sales, supporters and survivors in the Lowenstein family showed up in one way or another for this important cause.  

It was a blustery but beautiful night, and the ceremonies were moving and inspiring.  Here's a shot of some of the 20+ people from the NJ/NY team who walked for a cure for all blood cancers.  (Thanks, Jeseñia, for the photos.)

I was happy that my friend Bertha, from the Leukemia and Lymphoma Society support group that I attend, was able to walk with us.  Bertha was diagnosed with not one, but two, different type of blood cancers, and is now in remission. 

Perhaps the most gratifying part of the Walk on a personal level was having the Federico family with me among hundreds of survivors, caregivers and supporters, as we paid tribute to Linda, my friend from Transplant World in Hackensack, who passed away in July.  I knew Linda would have been proud of Joe, Marc, Jon, Michael and friend, Andrew, for carrying the torch she so passionately wanted to keep lit. 

As I prepare to cross another finish line, I've come to realize that in Transplant World, the finish line is always moving.  The race is never really over, especially with a donor transplant. Even after the five year mark, when people are officially declared "cured," any shock to the immune system can trigger Graft vs. Host Disease (GVHD) or some other problem.  Take, for example, having lung surgery.   

About a month after the surgery, when I could finally take a breath and a step without pain, I developed what I call the Mystery Rash, along with a head cold.  GVHD has always shown up as rashes, so my heart sank as I thought of another 4-6 months of steroids lowering my immune system and setting me up for a host of bad things.  Almost everything I've suffered through since the transplant can be traced back to long term use of steroids to fight GVHD.  I practically came unhinged when I went to the doctor's office with my fears of backsliding.  I tried to stay calm, but my panic was obvious.  To my shock, my team didn't think it was GVHD, but they took a skin biopsy to be sure.  I was put on a low dose of steroids with a two month taper schedule to knock out the rash, whatever it was, and assured that the dose wasn't high enough to kick off the domino effect of complications.  That, in itself, was a major hurdle.  The skin biopsy came back negative for GVHD, and listed a variety of possible allergens, "including insect bites, drugs, ingestants and inhalants."  None of this made sense, since my medications hadn't changed, nor did anything I had been eating or inhaling, and I don't remember landing in a pile of bugs in the recent past.  But, just to cover all bases, my allergist and transplant team treated me in one way or another for all possibilities.  Yes, even bug bites.  After a month of misery, the Mystery Rash is finally gone and I'll finish the steroid taper at the end of the month.

The head cold lingered and eventually turned into a sinus infection, but this should clear up soon.  When it does, I think I might actually be pain free for the first time in over a year.  Plus, my energy is coming back, I'm starting to exercise, and I'm slowly pushing through a To Do list that I never thought I'd get to.

My next finish line is on November 17th, when I will be one year post transplant.  Clinically, this is a big deal.  Medical research measures outcomes in terms of one year survival rates.  The treatment options change should something bad happen, and statistically, most people who relapse will relapse in the first year.  For me, it means I will soon be off all my transplant related medications and can rebuild myself with an immune system that has finally taken over on its own.  I will honor my first birthday, knowing that the finish line will move again and again.  (I know better than to "celebrate," after the Negative PET Scan Party in October 2009 was followed two days later with the AML diagnosis.)

I went to see Dr. Forte last week, my long time oncologist and partner for all medical issues.  He asked me to prepare a timeline so that we could discuss all that has happened since the transplant.  It turned out to be 4 pages long with 17 test results.  Looking back at the last year, I was reminded of how rough it has been.  On the other hand, I remain in awe that this process actually works, that I'm doing so well compared to so many others who suffer much more serious complications, and that life will soon return to something resembling life before Transplant World. 

I am forever changed in countless ways by this last tour of duty in this war.  I'm taking it one finish line at a time.  By the time 2012 rolls around, I'll be ready for the next race, this time marking the milestones with health, strength, and continuing rebirth.

Kathy
CANcer + HEALth = CAN HEAL

Is it really mid August already?

Many of you may remember the days when you would get an e-mail from me asking for a donation for the American Cancer Society's annual Relay for Life event.  I haven't participated in that for a few years now because, well, I've been busy with other cancer related concerns.  My transplant buddy, Linda, who passed away last month from her second relapse of AML (see my last two posts), told me about the Leukemia and Lymphoma Society's annual Light the Night walk, and we planned to participate together. I promised Linda and her family that I would not only beat this disease, but that I would make as much noise as possible to educate people about AML, the need for donors, the importance of research and the need for financial support.

My law firm, Lowenstein Sandler PC, has been sponsoring quarterly events for the past couple of years under a pro bono program called Lowenstein Cares.  So I thought to myself, "Self, wouldn't it be cool if Lowenstein sponsored a team for the Light the Night walk?"  I was planning to participate in Light the Night somehow, but I wasn't sure how the firm would respond to my idea.  The firm, including several individuals, many of whom I hardly know, has been beyond supportive of me, especially over these last two years.  So I shouldn't have been surprised at the speed with which the Pro Bono Program endorsed the suggestion.

We now have an official team, "Lowenstein Lights the Night" for the New Jersey and New York offices, and we even have a team for our California office, "Lowenstein Lights the Night - Palo Alto."  The New Jersey walk will be on Saturday, October 15th beginning at 5 p.m. at Headquarters Plaza in Morristown, and the California walk will be on the same day at Palo Alto High School in Palo Alto.  There are a couple of ways to participate: 

1.  Walk with us.  If you click on the red "Join" button on the bottom of either of the team pages, you will be guided to a page explaining  how to join the team.  Once you join a team, you will then be able to set up your own personal webpage, where you can set your own goal, send out donation requests and invitations to the walk, utilize templates, establish an address book and  make use of other helpful tools.  You don't have to work at Lowenstein to be part of our teams, and I highly encourage my personal local friends to join us in Morristown.  

2.  If you can't join either team as a walker, you can make a donation on one of the team webpages or on my personal webpage.  For general information about the Light the Night walk, click here.

Although the walk is only two months away, I'm optimistic that I'll make it around the two mile course by that time.  My symptoms haven't changed much since my last update -- stomach pain, lack of appetite, tremors and I'm still underweight.  I've had a few bad weeks lately, but I hope to see some improvement soon, since I was finally taken off steroids last week for the first time in eight months.  The problem with cutting down on steroids (as I've done four times now), is that the lower the dose, the more I feel like I've been hit by a bus.  They're evil that way.  But they treat flare ups of Graft vs. Host Disease, which is very serious.  GVHD is also evil, but it's a sign that remission is holding and the transplant is working.  Everything has its pros and cons in Transplant World.  The trick is to focus on the big picture, and in my case, it's very positive.  My next step is to slowly cut down on the other immunosupressant, Prograf (Tacrolimus), which is a pretty intense anti-rejection drug.  Once I'm off Prograf, I should feel stronger, eat better, and hopefully go back to work!

In the meantime, I struggle with a warped sense of time.  On the one hand, it seems like time is standing still.  My recovery is taking so much longer than I ever imagined. Every month I think I'll turn a corner and start to feel like my old self again.  But then I remember everything that I've put my body through, and I realize how resilient the human body can be.  On the other hand, I look at the calendar and can't believe that the summer's almost over.  The seasons come and go, no matter what.  And as my birthday approaches in a couple of weeks,  I remember all that I've survived this last year and where I was last August for my birthday.  Three long time friends took me out to dinner in Phoenix when I was there to move my father into an assisted living campus.  I then came home to another bone marrow biopsy.  While waiting for the results, the litigation paralegals threw me a surprise 50th birthday party at work.  By the end of the week I learned that I had relapsed and was headed for more consults, more treatment and a stem cell transplant, only to then enter the abyss of recovery.

So here I am -- a year later, happy to be here, grateful for all the love and support I've received from so many. I'll never dismiss birthdays as meaningless again.  What better way to mark the milestone than to help raise money for a cause that's so close to home?  The October walk will be here before we know it, and right behind it my 1st transplant birthday on November 17th.  What a great second chance to be young again!

Kathy
CANcer + HEALth = CAN HEAL

Life's Extremes

Why is life always so extreme?  I wouldn't mind a couple of years of boring and uneventful.  How we respond to extremes may be the only thing that we can control when they stop us in our tracks.  Sometimes it's easy.  Here's an example:

Not satisfied with the plan to wait 3 months to figure out if the lung lesion I wrote about in my last couple of posts is a tumor or an infection, I asked Dr. Rowley if there was something more we could do.  He suggested a follow up chest CT to compare to the PET/CT a month earlier.  (A CT shows much more detail than a PET, which is a broader scan from mid skull to mid thigh.  A PET/CT combines both, with the CT honing in on a specific area.)  I sent the images to Dr. Georgiades at Johns Hopkins, and he called me with unexpected news.  He said that the lesion has gotten smaller, and that he thinks it's an infection because "cancer doesn't shrink by itself."  I told him I was never so happy to have a lung infection!  No tumor, no need for an ablation!  I was so relieved, I walked around dazed for quite a while.  Avoiding a surgical procedure is huge, since every medical intervention seems to have a domino effect on the progress of my recovery.  This news bolsters my theory that maybe the lung metastases have all been killed.  One would think that any lingering cancer seeds would have sprouted at a time when I had absolutely no immune system, right?  Responding to this extreme was easy. 

But I still have a lung infection to deal with.  Once we learned that the lesion is an infection, I began a course of heavy duty antibiotics, which, predictably, is wreaking havoc on my stomach.  I can barely eat anything, and as I write this, I dread my next attempt at a meal.  I'm down to 90 pounds and very tired.  I've realized the difference between energy and stamina.  Energy can be rallied short term.  Stamina is a whole different ballgame.  It's tempting to turn my exciting news into something negative, but I remind myself that these symptoms are a welcome alternative to having a lung tumor.

Here's an example of an extreme that's not so easy to respond to: 

Two weeks ago I received a call from my friend Linda's husband, Joe.  I met Linda during my pre-transplant chemo treatments last September.  She was also fighting relapsed AML and we shared the same basic game plan to beat leukemia for the second time.  We both had unrelated male donors, likely from Europe, and Linda got her bone marrow transplant the day after I got my stem cell transplant.   We became friends and kept up with each other after leaving the hospital.  Joe was calling to tell me that Linda had relapsed again.  I was devastated.  Joe was devastated.  I couldn't even imagine how their 3 sons, young men just figuring out what to do with their lives, were coping.  I tried to call on all the spiritual principles I know to be true, to find a way to process this horrible news, but I came up empty.  The next day I learned that Linda had had a stroke the night before.  This was a major setback because it left her too weak to receive treatment for the leukemia.

AML produces immature white blood cells that grow like crazy, forming a sludge in the bloodstream.  Healthy blood can't get to vital organs because of this sludge and, if I were to guess, this is why she had the stroke.  Normally, someone in this situation would receive more chemotherapy to put them into remission before receiving an infusion of lymphocytes from the donor.  Lymphocytes are among several different types of white blood cells.  They produce "natural killer cells," or NK cells, which kill cancer.  A lymphocyte infusion is the best shot for recovery from relapse within a year of transplant.  It's kind of a long shot, but it's usually the best shot.  Unfortunately for Linda, the stroke kept her from being able to receive chemo, which would have been the necessary first step.

Linda is now in hospice.  I've seen her several times, and Linda herself is showing me a different way to respond to this unthinkable situation.  She is facing her death with such grace, it's hard to stay in a place of fear.  She is surrounded by so many people who love her, all she has to do is put out her hand and there's someone there to take it.  In knowing that, she seems free.  It's the most amazing thing to witness.

After so many terrifying free falls over the past 11 years on this roller coaster called cancer, I really thought I had a handle on death.  Watching myself respond to Linda's tragic relapse, I realize that I'm not as advanced as I thought.  But I'm closer, only because Joe, Marc, Jon, Michael and their wonderful family have allowed me to be a part of their last two weeks.  Pain and grief are in the forecast.   There's no avoiding it.  For me, I hope to temper these feelings by focusing on Linda's incredible will and the love that surrounds her.

The extremes of life are what we remember the most, the times that make us either grow, or break us.  The choice -- which I think is the hardest thing we face -- is up to us.

Kathy
CANcer + HEALth = CAN HEAL

How long does this mini series last?

Oh, the ongoing episodes of this exciting mini series: The Life of a Transplant Patient. I feel like I'm living my own reality TV show. Just to clarify how disturbing that thought is to me, I'll go on record as stating that I watch absolutely no reality TV shows. None. Maybe my punishment for this lack of participation in what I think is a rather peculiar aspect of American culture is to never see a final episode.

I officially have chronic Graft vs. Host Disease (GVHD), an extended version of acute GVHD, which occurs within the first three months after transplant.  At my stage in the game (over 6 months), flare ups are labeled as chronic and the treatment schedule is longer.  Instead of tapering off the steroids every five days I'll be cutting back every two or three months.  This news did not make me a happy camper.  Because of this latest skin rash, I'm back on higher doses of Prednisone, causing me to be more susceptible to infections and viruses.  Consequently, adding insult to injury, I found out last week that the dreaded CMV virus is back.  This took away all camp happiness completely.  The tremors aren't going away anytime soon either.  Only after I stop the Prednisone will I be able to, again slowly, taper off the anti-rejection medicine that is causing them.  Might as well take away my last S'More!

In the meantime, I had an upper GI endoscopy to see if there's a concrete reason I've been nauseous and unable to eat well for the last six months.  Nope.  No concrete reason.  Everything came back negative.  It's good that I don't have GVHD or CMV or other viruses in my stomach, but it's not good that there's no clear course of action as to how to treat my symptoms.  The best guess is that my tummy troubles are caused by all the medications I'm taking.  My docs aren't likely to cut back on any of them for awhile since I have chronic GVHD and active CMV. 
 
In one of my "Why is this so hard?" moments, I called my friend Keith (I mentioned him in my last post), who is a two-time transplant patient.  He said, "Think of it as re-booting. Sometimes you need new software (medications) to keep the screen from going blue...."  There's no way I could have said it better.  It was exactly what I needed to hear.  He took my microscopic vision and gave me back the big picture.

I am confident that this mini series will come to an end, my screen will not go blue, and I will be a happy camper again soon (not to mix too many metaphors in one post).  There's just no other acceptable outcome. I have too much to do and my legs will only go in one direction:  forward....

Kathy

CANcer + HEALth = CAN HEAL

How does this work again?

I still don't get it.  I had heard of stem cell and bone marrow transplants, but I never stopped to think about how they actually work.  It doesn't help that the media never really tells the whole story.  They portray people as being sick one day and better the next.  To watch Kitty on Brothers and Sisters undergo a stem cell transplant from her half brother, you would have thought she was having her tonsils out (where were the consultants on this one?)  

It was only when my friend and colleague, Keith, had a stem cell transplant with his own stem cells (autologous), and when that failed, a second transplant with his brother's stem cells (allogeneic), that I gained an appreciation of the complexity of the process.  [Keith is doing great, by the way, two years post transplant.]  But I still didn't really get it.  Not only didn't I get how dangerous, precarious and slow the recovery process would be, but I also didn't get the science of it all.  I knew that the stem cells from my 33 year old male donor would cause my type A blood to convert to his type O.  It makes sense that if the bone marrow factory that makes all my blood is making type O, then the type A blood "still on the shelves," as Dr. Goldberg put it, will eventually be replaced.  It's still pretty weird, but it makes sense.

I recently learned that, in addition to my bone marrow being 100% converted to a male donor, the actual DNA is male.  Wait, what?  My bone marrow DNA is now male but the DNA for the rest of me is female?  Yes, indeed.  How does that work again? Seriously.  This goes beyond science fiction:  Too much science, not enough fiction.  I know it's real because I keep staring at the test results.  Yet I still can't wrap my head around it.  I could leave my blood on a crime scene, and when the cops show up to swab the inside of my cheek, I'm innocent!  I'm sure CSI has done at least one episode with this twist. 

It really is amazing how far the science of medicine has come.  I find myself cursing all the medications I have to take because of all the side effects that keep me from feeling well.  But they are literally keeping me alive, after this incredibly violent and bizarre transformation at the core of my physical being.

Imagine this screenplay:  Under medical guidance based on decades of research, a person's bone marrow is destroyed completely, leaving the patient on the brink of death.  In swoops a bag of magic stem cells from God knows where, and somehow the patient doesn't die.  The stem cells take hold, make new bone marrow, which produces new blood, and an internal war breaks out.  As the stem cells fight both cancer and the patient (host), immunosuppressants, antibiotics, anti-virals, and a bunch of other preventative medications work to anticipate the next battle.  In the meantime, the patient's DNA for part of the body may switch genders, but this storyline trails off because it doesn't make sense.  If the patient makes it through the first year, chances are the new stem cells will stop fighting the host but keep fighting the cancer and everyone will live together in harmony.  Fade to black.

Honestly, if you read a screenplay like this, how likely are you to invest in this script?  Not me.  It's too unrealistic.

With all these thoughts swirling around in my head, I started thinking again about my donor. I wrote him a second letter last week, hoping he will write me back. My letters are screened by the National Marrow Donor Program, as his identity is confidential unless he agrees to disclose it after a year.  Until then, we can correspond in general terms, without giving away personal information about ourselves.  Here is part of the letter I wrote to him.

When I think of you, I’m reminded of a story I’d like to share.  I was getting blood work done last October, before the transplant, as you probably were too.  There was a man in a chair across from me who was donating his stem cells.  I could tell from the questions he asked his nurse that he was donating to a stranger.  When I finished my tests, I walked up to him and said, “I’d like to thank you for what you are doing.”  He looked at me like I was totally crazy, and asked, “Why?”  I said, “Because you are saving someone’s life.”  He then said, “But this is easy,” gesturing to the IV in each arm.  Then I told him, “You may see it as easy, but it means everything to the person you are helping.  It literally means the world to them.  And someone like you somewhere will be doing that for me in about two weeks.”  I think it was at that moment he realized, as he looked at me standing in front of him, the importance of his donation.

It made me feel good to thank that man, because I couldn’t thank you.  You are that man for me, and I hope you know that you have saved my life.

I wish there was more publicity, knowledge, encouragement, incentives to donate stem cells and bone marrow in this country.  Several of my friends and family members registered to be donors after learning of my illness.  But most people don't know about the registry or its importance.  I know I didn't.  The vast majority of people of color who need transplants will not find a donor because matches are based on race and ethnicity, and there are not enough people of color in the registry.  This is nothing short of tragic.  The fight is hard enough, even when a perfect match is found, as in my case.  My donor is as much a mystery to me as the science of this journey.  To answer my original question, I don't know how this works.  I'm just glad it does.

Kathy
CANcer + HEALth = CAN HEAL

The spirit is willing, but the flesh is weak (Matthew 26:41)

Although I face no moral dilemma, as the title of this post might suggest, the phrase still applies, in a literal sense.  As I approach my 6 month birthday with my new immune system, I get a little frustrated that my flesh is still weak.  I honestly didn't expect for it to take this long to begin to feel better.  I'm not talking about feeling good, just better.  Here's the rundown:

Not So Happy Events
1.  Around the time of my last post, I pulled my sacroiliac (SI) joint in my left hip.  It was very painful to walk, and since I was pretty weak to begin with, it really slowed me down.
2.  A couple of weeks ago I got a cold, which started to move into a sinus infection.
3.  I started having stomach trouble again.  No appetite, a wacky sense of taste, and nausea all the time.  My doctor was going to order an endoscopy to see what was going on, but last week, when my skin became blotchy, he knew that my stomach issues and the new rash signaled a return of graft vs. host disease, or GVDH.  Instead of finally getting completely off the steroids, I was put back on a full dose of Prednisone to treat the third episode of GVHD.  At this stage in the game, after Day 100, GVHD is called "chronic," instead of "acute."  The weaning process for Prednisone with chronic GVHD is slower (just my luck).  My symptoms have gotten a little better, but it's sloooooow going.  In the meantime, I can only hope that the CMV virus doesn't rear its ugly head again.
4.  One of the side effects from the anti-rejection medication, called Prograf, is tremors.  I've been shaking since the transplant, but for some reason, the tremors have become ridiculous.  I can't write, typing is a challenge, and watching me eat soup or salad is every bit as humorous as any of America's Funniest Home Videos.  I probably won't stop shaking till I get off both the Prograf and the Prednisone, which may take 2-3 months.

Very Happy Events
1.  My SI joint is healed, thanks to my chiropractor and physical therapist.
2.  My cold/sinus infection is gone.
3.  I've had several negative CMV test results, so that is now officially under control.
4.  I made it to 95 pounds!  My appetite is improving and I'm trying to eat like crazy.
5.  I bought a beautiful pre-certified 2008 dark blue Audi A4!  Since I had to turn in my leased Toyota, it was time to find another car.  The timing was awful, as all 4 of the Not So Happy Events above occurred simultaneously.  But it all worked out.  I could have found something less flashy, something that didn't gut the remainder of my savings after paying an obscene amount for Zofia's caregiver services.  Here's my reasoning:  Assuming I die of old age, as most people assume, I'll have plenty of time to replenish my savings while driving a cool car.  If I die sooner (let's not forget that any one of us could get hit by a bus at any time), why not drive a cool car?  So here it is:

 

6.  I spent Easter Sunday with relatives in Carmel, NY.  I haven't seen my New York family since October, and I was so very happy to be able to spend some time with them.  It was the best Easter I've ever had.

7.  I was able to do something this week that I haven't had the energy to do since last summer.  I took a walk.  It wasn't a long walk, only about 30 minutes with a 10 minute rest on a very hard bench to take in life's wonders, but it was huge for me.  Sporting my new brimmed hat, prepped with 50+ sun block, and fortified with my decaf iced soy latte, I set out around the park in Maplewood Village.  I was thrilled.  The weather was perfect and everything smelled wonderful.  It was so comforting to see people doing normal things:  mothers pushing baby carriages, dogs walking their owners, kids playing soccer or frisbee or just goofing around, fitness minded folks walking or running to prolong their lives.  Of course I was exhausted the next day, but it was well worth it.

I still have several side effects from the medications, including the tremors, and my energy will plummet again as I taper off the steroids, but the Very Happy Events outweigh the Not So Happy Events, so I'm grateful for my progress.  My recovery schedule is not under my control, nor is it under my doctor's control.  It's dictated by my donor's bone marrow, which is now my bone marrow.  I will teeter on the edge of more Not So Happy Events until my new immune system realizes that I am its new home and settles in.  Eventually, the weak flesh will catch up to the very, very willing spirit.

Kathy

CANcer + HEAL = CAN HEAL

Good News Among World Tragedy

My heart grows heavier every day as I watch the events unfold in Japan.  Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need.  The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia.  My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster.  They are the martyrs in this tragedy. 

It's hard to celebrate happy things when so many people are suffering.   But I do have reason to celebrate.  My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed.  This means that I am in complete remission and the report could not have been better!  My relief is indescribable.  When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i.  This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission.  I was an exception, as usual, and I relapsed.  But when any abnormalities show up, they indicate the presence of leukemia.  I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed."  Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor. 

As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up.  It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them.  But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds. 

My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally.  All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working.  In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November.  I'm free!  This makes me feel less like a cancer patient and more like a regular person.

I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight.  The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner.  I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.

Cancer is a tough war to fight.  This has been an especially tough tour of duty and it's not over yet.  The battle fatigue is difficult for an impatient person like me.  Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again].  I don't mean to compare the two experiences, but the concept struck a nerve.

Overall, I'm optimistic about my future.  I've seen enough of the front lines.  Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer.  But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary.  No problem.  I'm committed to living a very long life and dying of something other than cancer. 

I send my thoughts and prayers out to those in Japan fighting their own horrible war.  They too are on the front lines, battle fatigued and scared.  I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can.  I'm also glad to see relief pouring in from so many counties.  Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.

In love and faith,
Kathy

CANcer + HEALth = CAN HEAL

Didn't Expect That Detour

Life in Transplant World can be such an adventure.  While trying to manage recovery, GVHD, the viruses and infections that can pop up at anytime, some random thing can smack you right in the gut.  And it did.  The day after I wrote the last post, a Monday, I went in for a treatment for the CMV virus.  Having received two of the three required negative test results to stamp down this beast, I was hopeful that the new GVHD flare up wouldn't re-ignite the virus and that this would be my last treatment.  During the five hour infusion, I developed stomach pain that got worse as the day went on.  I was so sick by the time I left, I was given two choices:  get an IV of anti-nausea medication to get me home so that I could take pain killers, or go to the ER.  I elected option one.  That was a mistake.  I made it 2/3 of the way home and had to pull over.  If Dave and Betty hadn't retrieved me from the Parkway, I would probably still be there.  I was sick on and off the next day, and by Wednesday morning, I had pretty much collapsed.  Again, Betty came to my rescue and drove me to the ER.

[For those TMI (too much information) readers, you may want to skip this next part.]  A CT scan of my belly showed that I had a small bowel obstruction that was unrelated to the transplant.  It takes a lot to render me speechless, but that sure did.  A what?  How?  Apparently, this is a standard risk of any abdominal surgery.  No one knows how scar tissue will be formed, and sometimes part of the bowel adheres to the scar tissue causing it to twist.  It can happen years later.  One doctor told me that his 75 year old father had a small bowel obstruction from a surgery that he had when he was 17.  I've had one open and two laparoscopic abdominal surgeries, and one of them probably caused the obstruction.  But on Day 100, when I was supposed to be celebrating milestones in my recovery?  At least it explained why I had been having such bad stomach pain whenever I ate for the last two months. 

I was admitted to the hospital and told that inserting a nasogastric (NG) tube usually does the trick.  It's everything its name implies and extremely uncomfortable.  If that didn't work, they would have to operate, which would then create more scar tissue, increasing the risk of this happening again (not to mention the risks associated with very low blood counts and a compromised immune system).  I was in the hospital for four days, unable to eat or drink.  Thankfully, the terrible NG tube worked and the pain and obstruction are gone.  I'm very happy to be able to eat again, especially since I now weigh 88 pounds.  (I'm eating as much as I can, but the steroids work against me.)  Mary dropped everything and drove from Pittsburgh to help me through this ordeal, as she always does when I'm having a crisis.  I honestly don't know what I would do without her. 

This was certainly an unexpected turn of events that surprised everyone, and I must say, led to some of the most terrible moments of this entire process.  But it's over, hopefully not to be repeated.  As predicted, the increased steroids to treat the second round of GVHD have turned my muscles to mush and lowered my counts.  Also predicted, this brought back the CMV virus, for which I am still being treated.  I feel like I'm swimming upstream, but I have to focus on the passage of time.  I am 110 days old, and my new immune system is learning its way around its new home.  In terms of the transplant, my doctors say that I'm doing great.  I had my twelfth bone marrow biopsy, and I should get the final results in about a week.  Thankfully, this was the last planned biopsy, so my poor hips can finally heal from all those corkscrew invasions.  I'm slowly coming off the steroids, which will allow my body to heal itself from viruses and bring my counts back up.  Although I thought that March was to be my month to gain weight and build my body back, it looks like it might be April.  As long as I get there, I'll be happy and grateful.

I've been to a couple of support groups this week, and again, I'm reminded that there are those that have endured much worse complications than mine.  I really do see a light at the end of this tunnel, and when I finally see the sun (well, I'll have to wear a lot of sun block), I'm busting back into life!

Kathy

CANcer + HEALth = CAN HEAL

Two Steps Back... (or are they?)

This has been another busy month.  In addition to fighting the CMV virus (see last post), I contracted another hard to treat virus and an infection.  Then, a week ago Friday (after the doctor's office was closed, of course), I noticed an uncomfortable rash spreading everywhere.  It felt like a bad sunburn.  I knew immediately that I was having another attack of GVHD -- Graft v. Host Disease.  I was almost through with the steroids I had been on for 10 weeks to treat the first rash, and I was looking forward to getting off them completely that next Monday, gaining some weight, and feeling stronger.  When I called the on-call nurse on Saturday morning, she upped my dosage to get me through the weekend, and on Monday, my doctor gave me a whopping one time IV dose to "put out the brush fire."  I had been tapering down to 10 mg. every other day, and now I'm starting all over with 100 mg. daily.  I came so close!

Since steroids suppress the immune system, I was told that the CMV virus, which was almost completely under control, will come back and that I have to stay on the really strong medication that makes me pretty sick.  Again, so close!  It will take about another 2 months to get where I was 2 weeks ago, but it's important to beat down the GVHD once and for all.  I'm told this is all perfectly "normal," and that setbacks like this just come with the territory.

The good news is that the steroids rev me up and I have a little more energy with a little better appetite.  I'm trying to take advantage of this with the weather nice every now and then.  Today is Day 97, so maybe with the passage of time and I won't feel as bad as I did before. 

As I sat at the doctor's office that Monday, getting the 5 hour CMV infusion and the brush fire suppressant, I was pretty discouraged.  Then a big, burly, healthy looking man with tattoos on his neck and a larger than life personality, took a chair for a treatment.  Listening to him talk with another man who was donating stem cells, I learned that he's had a really rough GVHD journey.  His GVHD attacked his gut and ate into his intestines, requiring surgeries and other awful procedures.  He also went blind and had to have the inner lenses of his eyes surgically repaired so that he could see again.  Now he's getting treated with a process called photopheresis.  This is very effective for bad cases of GVHD, in that it siphons off the patient's blood from one arm, treats the T cells in that blood (where GVHD is found) with a special drug, after which ultraviolet light is then used to clean everything up and the blood is then returned to the patient in the other arm.  The problem is that these treatments take all day, are usually 2-4 days a week, and can go on for a year or more!

As I listened to him, I was stunned at his positive attitude, sense of humor and resilience.  The word inspiring doesn't come close to describing this man.  I sat in my chair, humbled and embarrassed at my flirtations with self pity.  I really have little to complain about.  If things don't go exactly as I hope they will, so be it.  Getting a new immune system and having it work takes time, and I've been very fortunate so far.  My two steps back are very baby steps compared to many in my situation. 

I probably won't get the bone marrow biopsy this week, with these recent medical events.  But I should have it soon and know the results around mid-March.  Knowing that I'm in remission with my new stem cells will be a big sign of healthy days to come.

In my December 24, 2010 post, I mentioned that my mother fell, hurt herself and was in rehab.  I also reported that the crisis was subsiding.  Not so much.  She developed a serious infection and was in rehab and then a group home for over two months.  The day that she moved from the rehab center to the group home, her neighbor discovered that her house had been broken into.  The thieves took her medications, blank checks, her car and anything else they thought looked valuable, while tossing her entire house into orbit and fleeing before everything landed on their heads.  Crisis back again.  Since the end of January, I've been trying to help coordinate the clean up, house repairs, identity theft, police investigations and financial matters, while my mother tries her best to recover physically and emotionally.

As usual, I approached this like a trial with logistics keeping me focused and feeling purposeful.  But, as with any trial, nothing could have been done without a team.  With the tremendous help of my mother's neighbors, the Keatings, all the wonderful professionals, my sister, Lynda, and some of her friends, and my best friend from grade school, Sheryl (along with her husband, Rick), Mom is now home -- safe, healed, and slowly getting back to her life.  My Timing Angel kicked in a couple of days before my mother came home when Sheryl, whom I had lost track of since the 1980s, found me online.  We connected on the phone, she expressed an interest in helping, and she has been assisting my mother in countless ways ever since.  She and the Keatings, who check on my mother almost daily, deserve a special shout outs.

One big relief for me is my father's progress in the nursing home.  His dementia has slowed, and he sounds better than he has in several years.  In fact, he was named Resident of the Month for March, and nominated for Valentine's Day King!





I'm so thrilled to have Sadie home again, bringing life, humor and purring cuddles to my world again. She and her Pittsburgh cousin, Mikey, peacefully co-existed for 2 months, although Sadie clearly saw herself as in charge.




Over the next few weeks, I plan to go to physical therapy a couple of times a week to build endurance and muscle strength, take some walks and see a few friends.  Here's to the winter thaw and the many reminders we encounter every day of all that we have to be grateful for, even if life presents us with setbacks along the way.  With Sadie, Bruce Springsteen, Netflix, and my Kindle to help me stay grounded, I'm doing just fine.

Kathy

CANcer + HEALth = CAN HEAL

One Step Forward...

I sat down to write an update almost two weeks ago, but ran into a few obstacles. Overall, the good news outweighs the bad, but it's been a juggling act. I've been on IV medicine twice a day at home for a flare up of a virus called CMV. We all pick up random viruses as we journey through life, many of which lay dormant in our bodies without us even knowing they're there. CMV is one of those viruses. Like mononucleosis, people may never get symptoms. It's passed on by transfusions, breast milk from a CMV+ mother, and being around other CMV+ people. Research shows that at least 80% of the population is CMV+. Somewhere between my treatments last year at Englewood and my treatments at Hackensack, I picked up the CMV virus. My donor is CMV-, so he's in the clear.

Stem cell and bone marrow transplant patients, since we're getting our entire immune system wiped out, are at risk for a flare up of CMV. In these cases, such a flare up can be bad -- very bad. Every week my CMV levels are tested, and on December 28th, the virus showed its ugly self. Aside from the hassle of giving myself IV infusions every day 12 hours apart, the medicine gives me severe headaches and stomach pain that have been getting worse and worse as time goes on. Because it takes time for the medicine to work, my CMV levels went up, way up, before they went down. Then they went up again. This week we switched to a different drug -- a 5 hour infusion once a week at the clinic. I'm feeling a little better, now that I have an arsenal of pain and nausea meds, so let's hope this drug does the trick. I'll need at least three more weeks of treatment before we can close this chapter in my recovery adventure.

About those pain meds. I don't like taking them, but I'm not one of those stoic pain sufferers either. There's good pain, like when you push yourself to get strong or exercise muscles, and there's bad pain, which is just bad pain. I believe that the body doesn't heal as well when there's bad pain, so if there are drugs that can take that away, all the better. The problem is, there can be painful side effects to the pain meds. I don't like how groggy and useless they make me feel, and I really don't like it when they don't work, but usually they do help, so I take them when I really need to.

All this came to a head the day after I released Zofia as my caregiver, of course. I paused to reconsider this decision, but not for long. There was nothing that Zofia could have done for me to make anything better or easier to deal with. I was happy to get my space back and it was a return to normalcy that I was ready for and needed. With my cleaning lady returning, Peapod grocery deliveries from Stop and Shop, and friends willing to run errands if needed, I'm all set. Plus, Zofia left me with meals for weeks, so food preparation is super easy.

Now for the happy news: Sadie's coming home this week! I bought an industrial respirator mask to wear when I clean her litter box, and took it to show my doctor. After giggling at me, he agreed that Sadie can come home from Pittsburgh. Mary and Sadie will arrive on Sunday and more normalcy will be restored.

Another happy thing happened last Monday, when I had the central line taken out of my chest and a PICC line inserted into a vein in my upper arm, as I had last year during treatment. For some reason, PICC lines are not adequate for receiving stem cells. I know how warped it sounds to call this a happy event, but folks, it's a big deal. The line in my chest was causing me trouble and it was impossible to keep dry in the shower. Throwing on a plastic sleeve and taking a long, hot shower, well, it's the little things that make me giddy these days.

I've past the 60 day mark, without any hospital admissions or major complications. I'm extremely lucky. I still marvel at this whole process. The changes my body goes through on this science fiction journey are a constant surprise. I had no idea that treatments for blood cancers are so complicated and sophisticated. My experience has taught me that it's impossible to separate science from luck or luck from faith, attitude and perseverance when trying to make sense of how things turn out. All I know is that I'm grateful for each day of healing.

Kathy

CANcer + HEALth = CAN HEAL

My Christmas Gifts

As I sit here on Christmas Eve, I feel extremely blessed. I'm home, safe and comfortable, finally in control of my environment, schedule, and diet, which does wonders for the psyche. Also, I'm finally free of the IV pole. (Maneuvering that around for 4 1/2 hours a day was quite a site. And no, you will not see me on You Tube re-defining pole dancing, as Mary suggested.) I'm doing well, eating more than I have ever eaten in my life, thanks to Zofia, and so very grateful for every healthy day.

My doctors are very happy with my progress, and I haven't had too many complications since coming home. My October 31, 2010 post mentioned Graft v. Host Disease, or GVHD, a condition where my new immune system, because it doesn't know where it is, will try to attack both me (not a great thing) as well as any leukemia it comes across (a very good thing). GVHD can be very dangerous, so I'm on meds to minimize this. Usually signs of GVHD show up between 30 and 60 days. I developed a skin rash that was determined to be GVHD the day I was discharged (Day 14). Since it's good to have a little GVHD, I might as well have it sooner rather than later. Hopefully, I'll avoid the other forms of this that can be much more difficult to deal with. Other than rendering my hands useless, the rash was not a big deal physically. It did, however, require me to start on a boatload of steroids.

I always thought that steroids are meant to build muscle mass, but apparently, not so if they're controlling GVHD for post transplant patients. I was around 90 pounds when I came home and was expecting to put on some weight when I started eating again. In spite of the incredible meals Zofia makes for me, I've only gained a few pounds. My doctor said it's the steroids, and that I may lose even more weight, as well as muscle. No wonder I don't feel as physically strong as I thought I would by now. I started to taper off the steroids, so this should get better with time.

It looks like I may have dodged one bullet with the steroids, which is the possibility of getting temporary diabetes. Although I usually avoid processed sugar because cancer feeds on sugar, I said to Zofia the other day, "We need some fruit pie and cookies!" I even broke tradition and agreed to let my Aunt Amy send me a tin of her fabulous homemade Christmas cookies. Yesterday my Arizona friend, Laura, sent me a batch of dairy free (she knows me well) chocolate chip cookies. I couldn't be happier. Zofia also made her famous homemade apple cake. Oh the choices!

I have three goals to reach by Day 100. About 50% of transplant patients end up being readmitted to the hospital for GVHD complications. I am determined not to be one of them. By Day 100, I should be able to unpack my emergency hospital suitcase. (I tried this once, just before I relapsed -- see August 24, 2010 post. I'm using a different suitcase now, so all should be fine.) Also at Day 100 I will have another bone marrow biopsy to determine if I am in remission. Since I achieved a total genetic remission before the transplant, and I had a perfect donor match, I'm optimistic about this goal. Most importantly, by Day 100 or possibly sooner, Sadie can come home again. I miss my kitty cat! She's been living with Mary and her family in Pittsburgh since I went in for the transplant because I can't be around her litter box. I can't wait to have her back home!

Although I thought I'd be incredibly bored by now, my days seem to be quite busy with post transplant care and other projects. Whenever I have a medical crisis, my mother in Arizona has a habit of presenting me with some competition. In 2006, a few days after having part of my lung removed, she fell, developed a brain bleed and ended up having a craniotomy. Last year, when I was first being treated for leukemia, she had a heart attack. This month, she fell twice within a week, which landed her in the hospital for injuries and later in rehab. She's recovering nicely, and will be released soon -- crisis subsiding.

Overall, I have to give credit for the peace of mind I have about my progress and ability to heal to Zofia. I was nervous about having a total stranger move in with me and having to care for me when I felt so sick. She has turned out to be the perfect caregiver. She's turned my kitchen into a restaurant. I came upstairs one morning to find her flipping homemade crepes! In addition to her delicious, healthy meals, she works incredibly hard, is just as OCD as I am, and she likes Bruce Springsteen! She's a friend and welcome companion who keeps me from worrying about how I would possibly do everything for myself when, at his point, I still struggle with the stairs.

Tomorrow, Zofia will be making a Thanksgiving dinner for Christmas since I was on a diet of narcotics that week. I spent the last two Thanksgivings very sick from treatments, and I'm really looking forward to some turkey and stuffing. Michael will join us and we'll have a great Christmas among friends. My very thoughtful boss, Scott, knew I wouldn't be up to decorating, so he brought over a tree, complete with decorations and lights. My place is full of Christmas cheer, and as I look at the totality of this Holiday Season, I can't imagine a more perfect collection of gifts, on so many levels. One of my biggest gifts this year has been your prayers. I know that I am surrounded with love and support, and it calms me, gives me hope and strength, and inspires me to have faith that all will be healed. I thank you deeply for this and I hope you all enjoyed a Christmas as meaningful as mine.

Kathy

CANcer + HEALth = CAN HEAL