Tomorrow there'll be sunshine and all this darkness past...

There's really nothing quite like watching a frozen river during a snow storm.  Seeing  massive chunks of ice creep along in front of the Pittsburgh skyline is a very dramatic sight, especially from inside, where it's warm and toasty.  

A few of you received advanced notice that my options have run out and I've decided to take advantage of the services that hospice provides at home.  My last post talked about a few possibilities that I was going to pursue.  These didn't really work out.  The doctor in Virginia who specializes in proton therapy turned out to be a disappointment.  About a week after returning from that very long road trip over the busiest travel weekend of the year (Thanksgiving), my breathing took another dive and I could not walk and breathe at the same time.  I spent about a week in the hospital while the doctors tried to rule out some obvious causes for the problem -- blood clot, infection, collapsed lung, excess fluid, etc.  The verdict was the same as it was when this first became a problem in the summer:  my lungs are shot from progressing cancer and over 30 local treatments to control it over the past 15 years. Any additional radiation or ablations would do more harm than good and I'm not strong enough for more whack-a-mole attempts to stay ahead of this.

I had some tumor samples from the lung surgery in 2012 tested for genetic mutations to see if any experimental drugs might help slow things down.  This also turned out to be a dead end.  Even if there is something that might help prolong the inevitable for a few months, I've had more drugs to fight leukemia from 2009 through 2011 than anyone can expect to withstand in one lifetime.  

We knew this day would come.  I've been lucky to have made it this far with my history of 3 serious cancers.  I'm now on oxygen 24/7 and I can't leave my apartment on my own two feet.  My breathing problems make it difficult to talk, so I've limited my communications to email.  I'm also not the type of person who wants people around when I'm sick, so these factors have led me to request that people not come to visit.  It's easier on me in about a dozen ways, so I thank those of you who have respected these wishes.

I spend my day managing my symptoms, watching DVRd TV shows with Mary, as she works hard at being the world's best caregiver, and petting Sadie as much as she will let me.  Watching the news and the ridiculous political campaigns keep me pondering what kind of world I'm leaving.  I hope I'm around to see Donald Trump go down in flames. Hey, my blog, my opinion, my last wishes!  

Along with Mary's daily visits to keep me sane, the hospice team comes almost everyday too and they are all wonderful.  I wish they didn't have the reputation of call-only-when-the-person's-about-to-croak.  I feel that hospice workers are misunderstood.  They can provide help that no one else can and with experience and compassion.  Knowing I will no longer receive any treatment, I don't have to worry about doctors' appointments, medical tests, or decisions about where to go next.  I'm very grateful for my team here and the care I'm receiving.  The goal of hospice is to make me feel as comfortable as possible.  

It may take several months for my body to call it quits.  Or it may not.  I feel like my body deserves a rest and I'm not at all afraid of dying.  I will leave this life knowing that I have given it my very best shot -- chasing down doctors, medical techniques, research, and advice from the amazing community of ACC patients all over the world.

I know that most people fear everything about death and dying -- even talking about it.  Much more destructive than death, in my opinion, is denial.  Denial will wreck you.  When someone tells you that they've made a decision about how to live or die, don't deny them your support and unconditional love.  Most people, in their grief and anticipated loss, just don't know what to do or say.  It's hard for everyone. But it's mostly hard for the patient.  Here are a few dos and don'ts when it comes to things to say to a cancer patient (or about me):    

1.  "She lost her battle to cancer."  (Read here.) The implication is that I just didn't fight hard enough.  Nothing could be more offensive.
2.  "God never gives you more than you can handle."  This is another annoying cliché.  The God I believe in would never test people to see how much they can handle.  How mean would that be?
3.  "Everything happens for a reason."  Really?  Bullshit.  This is one of the most insulting things a cancer patient can hear.  Classic Blame The Victim.
4.  "What is your prognosis?"  Well, if it's not good, you've just made the person feel like crap having to explain that they're in bad shape.  
And the list goes on....

The problem is that people don't have any good examples of helpful, loving ways to express support instead of these unhelpful blunders.  A better approach would be to ask them what they need and how you can help.  Then listen to what they say and do it, whether you agree with it or not.  It's their illness, not yours.

And now that I've rambled on and on, I can't say for sure if this will be my last blog post or not.  As with everything in life, we should assume that this moment is our last and cherish what we have right now.

As long as I can stay in the present, I can honestly say that I am happy that this will soon be over.  It's hard for my ego not to make a mental wish list for my next lifetime.  My faith is in the Higher Power that resides in all of us, so I'm good with whatever comes next.  I'm hoping that if I end up on Earth again, I'll have better hair and dimples, but who's to say that would make me happy?  For now, I'll watch my DVRd TV shows (suggestions for binge watching are welcome), enjoy Sadie and watch the river just outside my door.  My energy comes and goes, so please forgive me if I take a while, or can't, respond to your messages.  Know that they are received and appreciated.

I want to thank all of you for your love and support when I've been sick and when I've been well.  I'm a very lucky person to have known all of you, even those of you I've never met in person.  Take care of your bodies, take care of each other, take care of the planet.

I love you all.

Kathy

CANcer + HEALth = CAN HEAL

More New Beginnings

On November 17, 2010, when my new bone marrow came to live with me, one of my transplant doctors wished me, "New beginnings!"  (See December 5, 2010 post).  New beginnings it certainly was -- new chances, new opportunities, a new future.  Now that it's been almost 5 years since my Acute Myeloid Leukemia adventure began, my attention for the last few years returned to my 14 year battle with metastatic Adenoid Cystic Carcinoma (ACC).

The radiofrequency ablation (RFA) to a left lung tumor on June 2, 2014 was an easy one.  Two days off from work and I could barely tell anything had been done at all.  As long as ablations take place in the lung tissue, away from any vital structures like major airways, the chest wall, the heart, etc., this whac-a-mole approach to killing metastatic tumors is pretty easy to manage.  But when cancer cells creep into the lining of the lungs, called the pleura, that's when things get complicated.

The pleura is like a slip-and-slide, providing lubrication between the lungs and the ribs to allow for expansion within the chest.  Once cancer cells start slipping and sliding in the pleura, they can take up residence anywhere, and nodules/spots/tumors are very hard to detect and contain.  Another problem is that the pleura contains lots and lots of nerves, which is why it's safer to kill tumors there by freezing them (cryoablation) rather than cooking them with RFA.  Even with cryoablation, it is difficult to avoid nerve damage to the really big nerves that run all along the spine (intercostal nerves).  A third problem is that ACC travels along nerves, making tumors in the pleura a really big pain, literally.

My current situation is that all the nodules/spots/tumors that now show up on my CT scans are in the pleura of both lungs.  We don't call them tumors until we can see over time that they're growing, but we're at that point now with some of the spots we've been watching, so it's time for a couple more trips to Baltimore.  This may sound like terrible news, but it's actually nothing all that new.  The new issue is that instead of having the simple RFAs that I've had in the past, I now need cryoablations that are likely to result in a 2-6 month recovery period for each one.

The plan is to first have 2 tumors in the left lung cryoablated (killed with freezing gas); this is tentatively scheduled for September 15th.  When I have recovered from that, I'll have 1 tumor in the right lung cryoablated.  As long as the remaining lung spots stay put and don't grow, that should do it for awhile.  Thankfully, I have a slow growing form of this very slow growing cancer.  I had a cryoablation in my right pleural last October, and it cause nerve pain for a few months.  This time, it will be on my left lung, where I already have chronic nerve pain from the last lung surgery 2 years ago.  This will be my 10th ablation to tumors 24 and 25, so as most of you know, this is not my first rodeo.  (I actively look for chances to say that!)  Looking at the big picture, things could be worse.  A lot worse.

The real news here is a different kind of new beginning:  I finally had to accept the fact that I'm no longer able to manage this illness full time while working full time.  With the ablations coming up, disability is a given.  The fractured wrist injury in February really set me back and triggered several long term pain syndromes that I thought were somewhat under control.  Now that they're back, I have no choice but to focus on getting as strong as I can for what lies ahead.

I've worked in the Litigation Department at Lowenstein Sandler for 15 years.  The firm has been the closest thing to a family I've had my entire adult life.  It's hard to process the fact that I'm leaving to go out on disability again.  I don't think anyone can find a more understanding, supportive, go-the-extra-mile, generous company, anywhere.  I'll have to put off my thoughts about this for another post, when it becomes real.

Several people have asked me if I'll be bored or what I will spend my time doing.  Well, since disability is not retirement, and pain is never boring, I'll be spending quite a bit of energy recovering from cancer procedures and coping with their side effects.  But I refuse to throw pity parties or become a daytime TV junkie -- well, maybe a little bit.  As I'm able, I will build my health as much as possible and contribute to patient advocacy projects with the Adenoid Cystic Carcinoma Organization International (ACCOI).  I just returned from an ACCOI event for survivors in the heart of California's wine country.  You didn't know that cancer can bring such good times, did you?  I learned that I have some things to contribute and that my experiences can help others who are battling this really monstrous disease.  More on that in another post too.

My beautiful cousin, Niki, gave me an Easter lily a few years ago, which I planted outside my condo.  When the flowers fell off, the landscapers for my condo association cut it down.  I mourned in anger and eventually forgot about it.  About a month ago, I discovered that the lily had grown back and was in full bloom, bent and worn down from rough times, but still alive and thriving.  I thought to myself, "That lily is kind of like me.  Bent and worn down, but still here and determined to survive the rough times ahead."  This morning I realized that the landscapers came and cut down the lily again.  "No worries, it will be back," I thought.  This time I didn't get angry or sad.  I just smiled to myself.  The spirit of life has a way of breaking through.

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

Modern Medicine = Science Fiction?

Ever since my stem cell transplant in late 2010, I've thought of medicine as science fiction.  These days, it's hard to even fathom what is taking place.  I still can't believe that my blood and bone marrow belongs to someone else, and that my donor's DNA is coursing through my veins.  That entire experience still blows my mind.

But, as we all know, I'm now fighting on a different battle field.  For the last 14 months I've returned to Cancer World, circa 2000, when I was first diagnosed with a rare head and neck cancer that appeared in a gland in my breast (Adenoid Cystic Carcinoma of the Breast or ACCB).  My latest battles began in June 2012 with more tumors in my lungs, kidney and a rib, with treatments ranging from surgery, radiofrequency ablation (RFA), cryoablation and radiation.  Then, in July, I had an about-face and a CT scan revealed that several lung tumors were shrinking or just going away.  I'm trying not to obsess on the results of the next PET/CT on September 13th, but I'm sure you can guess how that's going. 

In the meantime, I've been continuing my quest for answers.  The Human Genome Project began 10 years ago, and the research to predict a person's predisposition for illnesses based on genetics has exploded.

The last decade has revealed the transformative power of using genomic information for the diagnosis and treatment of cancer....  Determining the presence of specific genomic variants also avoids the implementation of ineffective treatments.

 In 2009, just before I was diagnosed with leukemia, a Swedish study found that a fusion of the MYB and the NFIB genes cause ACC (regardless of whether is occurs in the head/neck or the breast).  Since then, targeted therapies have been developed and several more are in the pipeline.  Targeted therapies are not chemotherapy.  They are agents that attach to receptors on cancer cells and turn off the growth, some even kill the cells.  A few clinical trials have emerged for these drugs to treat metastatic ACC, but participation can mean significant travel expenses and harsh side effects, making travel even harder.  It's a huge commitment to receive treatment with a study drug that is so new (no trials for ACC are more than two years old) and unproven.

Enter: Tumor Profiling.  Because of the advances of the Human Genome Project, the price of genetic testing has been driven down.  Cancer patients can now submit slides of their tumors (made during surgery when the pathologist determines a diagnosis) to an outside company to be tested for genetic abnormalities.  The results not only tell people what cancers they are predisposed to, but what clinical trials are available for those particular cancers.  A person can then decide which trial is likely to work, rather than just hoping that they choose the trial with the right drug that might save them.

As a friend recently told me, "Forget everything we knew about cancer treatment and research prior to ten years ago.  Everything will now be based on a person's specific genetics.  This is the future of medical science."  He's right.  The research I did on private companies identified by the Adenoid Cystic Carcinoma Research Foundation (ACCRF) does not pertain just to ACC patients, but to ALL cancer patients:

Foundation One -- They test for 236 known cancer genes.  The cost is $5,800.

Personal Genome Diagnostics: They have two tests. One tests for 120 cancer genes. This test is $4,800. The other test is for 20,766 cancer genes and is $12,500. They are associated with Johns Hopkins in Baltimore.

Oncopath: They test for 159 genes.  They wanted me to tell them which genes to test for, after which they would give me a quote.

Since research on genetics is happening so fast, I decided to wait to have my tumors profiled so that the test I choose will capture as many cancer genes as possible.  It only takes a few weeks to get the results from these companies.  All three have very nice staff and offer assistance with insurance coverage.  For many cancers, genetic testing is covered.  But the latest research on ACC and the need for genetic testing is so new, my best outcome would be to try and have this expense covered with out of network benefits.

Another newly discovered resource in my world is an online support group associated with the Adenoid Cystic Carcinoma Organization International, ACCOI. This all volunteer organization is incredibly helpful for ACC patients.  Over 1,400 people have joined the patient website, sharing their experiences, support and suggestions.  ACC is horrific because it is so rare and misunderstood.  It doesn't behave like most head/neck cancers and for me, it's not classic breast cancer either.  It's its own beast and because no known chemotherapy works, it's incredibly hard to find doctors who understand what it is, especially in remote parts of the world.  This group is to me what Facebook is to so many others.  I've "met" people from around the world and learned a wealth of information.  I even learned of four other people who have metastatic ACCB.  (You may not think that's a lot, but it is.)  I also learned of some very interesting connections between ACC and the Acute Myeloid Leukemia I had.  I'll save that for another post.  I have yet to find anyone on the site who has had a stem cell transplant.  As far as I know, I still hold the world record on that one.

As I face this next set of tests, I'm somehow comforted with all this new and overwhelming information. I feel like I have more tools, more weapons and more soldiers who are fighting at my side.  I think that the old paradigm of taking decades to bring drugs to market has changed.  This is hopeful for all patients with serious illnesses who are running out of time.

Genetic testing is no longer limited to familial connections.  It goes way beyond baldness and eye color.  No matter how much it looks like science fiction, genetics is providing a road map for survival, a road map for cures. It's all in the genes.

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

Forms of Pain and Hope

Here we are, ten years after the 9/11 attacks on the World Trade Center, on our country.  For the past week, two themes emerge in the news coverage every time we look up: pain and hope.  Embedded in these emotions are resilience, survivorship and faith in better times ahead.  These concepts hit pretty close to home for me as I watch the coverage of the 10 year anniversary while recovering from a more extensive lung surgery than I had anticipated.

Because my lungs and medical history are so complicated, my surgeon proposed a lung resection (cutting out the entire mass), rather than an open lung biopsy, as I mentioned in my last post.  This would allow the pathologists to rule out leukemia, the first cancer (ACCB), the CMV virus I had twice, Graft vs. Host Disease which I finally fought off after 4 rounds, and figure out which of the several dozen possible infections had taken over my right lung.

I am so glad to have been scheduled for Friday, September 2nd, rather than Tuesday, September 6th.  I was released from Hackensack University Medical Center that Tuesday, and now I'm that much further from the long days of my Labor Day weekend.  If there is one constant in the universe, it's that nothing is ever simple with me.  Because my 7 a.m. surgery was delayed till about 4 p.m., Mary was able to make it from Pittsburgh in time to tell me, as I woke up in recovery, that all went well and my surgeon was very happy.  After removing the entire mass, which was the size of an orange (!), he reported that no cancer was found and it was definitely an infection.  We were all pretty sure that this wasn't cancer, but still, no cancer!  The events that followed only make for a good story, in light of the big picture.  But a story is still a story. 

I was doing so well after the surgery, I was sent to a room rather than the ICU.  The next morning when the nurse helped me into a chair, things went south.  Now, some of you know that I have fairly low blood pressure, and I faint easily.  I warned the nurse that I was getting dizzy and nauseous and down I went.  I fainted twice, and at some point, my heart stopped for 3 seconds.  I woke up to 10+ people working on me, and a high speed dash to the ICU, during which, as warned, I tossed my cookies. I felt as though I was living a scene from Grey's Anatomy.  After receiving all kinds of treatments, tests and machinery hook ups, the "episode" as it came to be called, was topped off with having the giant sticky pads slapped onto my chest "just in case they needed to use the paddles."  Of course I was fine within an hour or two, but I had sealed my fate.  I was confined to a small ICU room for the next three days, unable to get out of bed without a massive production of machinery management.

In the meantime, I struggled to deal with pain of the surgery and the chest tube that was sewn into my side for three days.  These problems were somehow worse than the left lung resection I had in 2006 to remove three of the ten masses that were found to have metastasized from the first cancer, ACCB.  (Ah, you forgot that this is all a repeat performance, didn't you?)  In 2006 I was a lot stronger, had a normal immune system and weighed at least 20 pounds more that I do now.  I suppose that explains it. 

The other issue was the puzzle to diagnose this infection.  Ruling bad things out provides tremendous relief, but there are so many possibilities as to what the mass actually contained, I now have to wait for more tests to come back and cultures to grow.  While in the hospital, precautions were taken, on the very small chance I may have something infectious, and as Betty noted, "this is turning into an episode of House."  Best case scenario:  I have something that requires no more treatment, and the surgery removed the problem completely.  Worst case scenario:  I have something that may require a bunch of medications for 6 months - 2 years before this is finally over.  In any case, treatment is not urgent, especially since the mass was first detected in May, so I'm just concentrating on healing from the surgery.  (Honestly, I have little choice in that regard.)

As I tend to the wounds from my latest battle, I am humbled by the courage and strength of those still struggling with the pain of 9/11.  Pain and hope come in many forms and we are all warriors at one time or another.  My heart goes out to all those whose lives were destroyed by the attacks 10 years ago -- those who survived, those who lost loved ones, and those first responders now dying of cancer who have become invisible to politicians refusing to protect their medical needs, insulting their sacrifice and their faith in a system they served with loyalty and dedication.

Perhaps we can take this weekend's lessons to celebrate the good that comes from tragedy (as it always does) and pledge to right the injustices that still linger.  Pain and hope.  There's no escaping them.  Thankfully, we have control over how we respond to them.  I marvel at the human spirit that binds us as a people to protect each other in times of crisis.  Here's to that spirit. 

Kathy

P.S.  Don't forget to sign up or donate to the Lowenstein Lights the Night team or my personal homepage.  Thank you for all who have done so already!

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

Being One for the Records

If you have to deal with not so good news, is it better to find out about it and take action when things are  "back to normal" or when things are kind of better but not so great? I didn't have much of a choice this week. I received some not so great news on Thursday when I had a PET/CT scan at Johns Hopkins. I learned that I have a new tumor in my right lung. I was surprised and disappointed, but as I've been telling people, one new tumor is better than twelve. I know this sounds strange, but in the grand scheme of things, one metastatic lung tumor, for me, is not really that big of a deal. I know what it is and what to do.

As you may remember (it seems so long ago), 10 tumors were discovered in my lungs in October of 2006. Three were removed surgically, and when the pathology confirmed metastatic disease from Adenoid Cystic Carcinoma of the Breast (ACCB) --  the first cancer diagnoses in 2000 -- the remaining seven were killed with radiofrequency ablation (RFA) at Johns Hopkins in Baltimore by Dr. Georgiades.  (See November 2008 posts.)

When I got my first negative PET/CT report showing "no detectable cancer" in September 2009, you may also remember that I threw myself a Negative PET Scan Party in October to celebrate. Two days after the party I became very ill and drove myself to the ER. The next morning I was told that I had an aggressive form of leukemia (AML) and was given a very grim prognosis. And the games began for cancer #2.  (See 10/22/09 post, Nothing Like a Good Party Before a Storm.)

When Dr. Georgiades showed me an image of the tumor from the scan on Thursday, I asked him why this happened. It was a stupid question. He could have said, "because it's cancer, dummy." But he knew what I meant. If cancer were to show up again, I thought it would be the 2 or 3 little tiny spots that he calls ditzels that we've been watching for the past 3 years and are too small to ablate. Where did this new one come from? He suspects that if I had a cancer seed, which otherwise may have just sat there forever, that seed may have grown into a tumor because I trashed my immune system. It popped up before my new immune system kicked in. It makes sense given the last 1 1/2 years (minus the 5 months I was in remission before the relapse) of being treated with an alarming amount of toxic medicines and chemotherapy, the last of which destroyed my bone marrow permanently.

Here's the positive spin on this new tumor situation: When I asked about the ditzels, Dr. Georgiades told me that they've actually gotten smaller. If I grew a new lung tumor, wouldn't you think that a weak immune system would have allowed the ditzels to grow too? Maybe that means that the ditzels aren't cancer after all. As I've said before, we all have spots on our lungs because our world has become filthy and our lungs are filters, like sponges. A lot of different kinds of junk gets stored up in a sponge over time. Only the spots that light up on a PET scan and grow over time are likely to be cancer.

Plus, I only have one tumor. If I had lots of dormant seeds it stands to reason, like the ditzels, that they would have grown too. Yes, I was pretty bummed out driving home from Baltimore. But mainly, I was upset about having to go through another procedure to deal with cancer, especially now. But knowing what's going on is better than not knowing what's going on. And the tumor isn't going away. Let's just kill the killer and get on with it.

Needing to exert as much control as possible, I called one of Dr. Gerogiades' nurses from the hospital lobby and tentatively scheduled the RFA for June 15th. It's a same day procedure, which I've had four times before, so I don't expect much drama. I'll stay with my cousin, Karen, who graciously puts me up every time I make the trek to Hopkins. A week after the RFA I probably won't have a single physical sign that anything was done -- not even a band-aid at the site. It's a pretty amazing procedure (see 11/2/08 post, Radiofrequency Ablation - RFA).  Anyone new to this blog who is curious about this 10 minute treatment can click here to watch a short video, filmed for the documentary that led me to Dr. Georgiades in the first place.

After all my pre-transplant tests were completed last October, I met with Dr. Rowley, my transplant doctor. He said, "the only thing I'm slightly concerned about is the cancer that was found to have spread to your lungs." "Oh, that" I said, dismissing him with a wave of my hand. "That's completely under control. It grows very slowly, can remain dormant for decades, and everything that's been identified as cancer has been killed. Because ACCB is so rare, you won't find much about it. It only occurs in <.1% of all breast cancer patients and of those it metastasizes in about 6% of the cases. There's only a few of us, maybe a couple of dozen at most since the 1940s." "Yes," he said. "And of those few, how many have had transplants?" "Oh, right. Probably none," I realized, feeling again, like the only one on the planet with my ridiculously rare medical circumstances.  Oh wait.  I probably am the only one on the planet....

Several people have suggested that I write a book.  Who would believe it?  I have a hard time believing it myself.  Being "one for the records" can be a scary thing.  But at a certain point, it also becomes humorous -- one of those "oh, paleez" situations.  I'm determined to win this prolonged battle and use my unique misfortune to contribute somehow to the landscape of knowledge on two very different diseases.  But before I can do that, I need to get off this rickety and dangerous roller coaster once and for all.  On June 15th, I'll be one step closer.

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

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

New Beginnings

That was quite a November! I had the hardest three weeks of my life, and then received the gift of life in the middle of it. I'm told I withstood everything right on schedule and that 3 weeks was a short stay. I'd say I withstood the first 5 or 6 days as I usually do when receiving chemo: maintaining pretty well till the side effects hit. Then I started 3 days of another super strong drug, anti-thymocyte globulin (ATG), which is an infusion of rabbit antibodies to prepare my body for the stem cells and help prevent rejection. Then, two days before the transplant, I received 2 1-hour doses of full body radiation.

I was already sick from the rabbit juice I was getting, and the radiation just sent me on a journey that culminated in several days of side effects requiring three narcotics, including morphine. When I said in my last blog post that this regimen was "burn down the factory," it was no exaggeration. By the time Transplant Day came, Day 0, I was feeling pretty lousy. I had almost taken my eye off the purpose of this process, a new immune system. One of my doctors came in to deliver my stem cell infusion, which was a very small bag of light pink liquid, and said that she was very excited for me. "New beginnings!" It was all over in 20 minutes. Just like that. A new, healthy future. I've never felt such a mix of emotions.

Mary, always my wing man, drove from Pittsburgh 3 times in 3 weeks to be with me (over Thanksgiving too), and she and my caregiver, Zofia, helped me get home on December 1st. I'm on 4 1/2 hour IV infusion everyday at home to make sure I get enough fluids and electrolytes, but that will only be for a few more days. I'm teaching my legs and stomach to work again, and generally feeling pretty weak. But I notice a slow recovery taking place, and Zofia has been great. She cooks, shops, cleans, drives me to clinic appointments, does laundry, helps me with medications for each meal, and anything else I want her to do. The Transplant Team at Hackensack requires each transplant patient to have a full time live in caregiver 24/7 for the first 30-60 days minimum. I thought this was a bit much -- that I could handle myself maybe with some help from friends. I could not have been more wrong. So, as I write this, homemade chicken soup is waiting for me for dinner.

Today I am 18 days old. I can't go out except to clinic appointments for awhile, but at least I'll be home for Christmas and able to appreciate the holiday. I'm taking things slow, since that's the only speed I know right now. I keep wondering about my donor. I found out that he's European. (My friend Micheal said today, "Wouldn't it be funny if your donor was Julian Assange? Oh no, wait, he's Australian.") I decided to write to him a letter, which has to pass through the filter of the National Marrow Donor Program. We're not allowed to know any personal information about each other. I wanted to thank him for his sacrifice and ask if he would be willing to correspond with me. It was nearly impossible to know what to say. Knowing that Thanksgiving means nothing to him, I tried to express my gratitude.

This Thanksgiving was intense in so many ways. I am most grateful for my European perfect match. But I am also indescribably grateful to everyone who has been helping, supporting and praying for me. I hope you all had an amazing holiday.

Kathy

CANcer + HEALth = CAN HEAL

And The Beat Goes On

I was a big Sonny and Cher fan when I was a kid. As the calendar advances, I try to remember that, although the beat may not be changing, it does go on. Today is Day 31 in Treatment World. It usually takes about 25 days get someone with relapsed AML back into remission. Although Day 14 brought me great news that the chemo destroyed my diseased bone marrow, the next step is recovering healthy bone marrow so that a complete remission can be confirmed. Due to the damage that each treatment brings, starting with the first leukemia treatment last October, my marrow takes longer and longer to recover. That isn't the case for most patients, but most patients don't have problematic bone marrow due to chemotherapy 10 years ago for a different type of cancer.

So I wait, and wait, hoping that my counts come up soon so that I can go home before the transplant. If they don't, well, then I'll stay here through the transplant process, which could be another 6-8 weeks. I spoke to one of the transplant doctors today and she said that this situation won't threaten the success of the transplant at all. It does, however, leave me at risk for two things: 1. infections due to low blood counts, and 2. the loss of my sanity!

I'm getting transfusions of blood and platelets about every other day, as well as a drug to stimulate the return of my white blood cells, but I still haven't had the usual spike that typically happens by now. That could change any day, and I pray that it does. But for now, it's status quo.

That's not to say that the last few weeks have been without drama. I contracted a pretty wicked rash as a side effect from the chemo that looked like measles on steroids. Then I had a bad allergic reaction to a platelet transfusion. I always wondered what the Rapid Response Team did. Now I know. Lots of people doing lots of things all at once. Now when I need a transfusion, I get special platelets with lots of pre-medication.

And more drama: I may have mentioned that, in mid August, two of my cousins and I went to Arizona to move my dad into an assisted living facility because of progressing dementia. This was a huge feat, since the search for a facility, wading through Medicaid applications and assessments, and the move itself had to be coordinated from New Jersey. The day after I returned from the move, I had a routine biopsy, which is how I learned that I had relapsed. A little over a week ago (less than two months since the move), the assisted living manager called to tell me that Dad is sleeping all day, not engaging in daily activities, and may have pre-pneumonia. A trip to the hospital and lots more assessments indicated that, for his health and safety, he needed to be moved into the long term nursing center on the campus. Thankfully, with the help of numerous understanding staff members at these facilities, we were able to move Dad seamlessly, and he is doing much better. He's in good spirits and responding well. And because he's such a sweet, gentle soul, everyone loves him. I'll have his things packed and moved into storage next week, and by the time I have the transplant, I'll have peace of mind that he's completely taken care of, which will help my stress level enormously. It's funny how the timing of these events happened. Had we not moved him when we did, I can't imagine how things would have turned out.

Reading over this post, it sounds a bit depressing. So let's focus on the good news:
* Although a donor hasn't yet been found for me, my doctors are very optimistic that one will be found soon. This process typically takes 3 or 4 months, but they're hoping to speed it up, since I'm stuck in limbo land.
* I'm not sick with anything right now. If I can stay that way, I'll get through the transplant as well as anyone else.
* I'm getting really great care, here in Hackensack.
* The miners in Chile have been rescued! This story had been driving me crazy. Must have been something about being trapped and having no control.

Hopefully, I'll write my next post from home and a donor will have been found. I'd love to spend some time with Sadie before Mary moves her to Pittsburgh to live with her family for the next few months, but that would have to happen within the next week.

So far, things have gone well for me. At this point, I'm not willing to settle for anything less, as the beat goes on.

Kathy

CANcer + HEALth = CAN HEAL

Sometimes a gloomy day is not so gloomy

We had some pretty impressive storms in the Garden State this week. On Wednesday and Thursday the sky went from gray to gloomy, to dark and then exploded in sheets of rain and wind. I watched from my hospital window in wonder as I tried not to think about the importance of these days in my treatment plan.

Wednesday was Day 14 in Treatment World. (Day 1 begins with the first day of chemotherapy.) On my regimen, this is the day I was scheduled for a mid cycle bone marrow biopsy. This test determines if the chemo is working, or if I need more treatment. Getting the leukemia under control is necessary to proceed with the transplant, so I was anxious to learn how I was doing. The best result would be for my bone marrow to be completely empty -- no leukemia blasts.

I had the biopsy Wednesday afternoon, and on Thursday afternoon, Dr. Goldberg reported that I'm doing great: no blasts detected in my completely empty bone marrow! Now we have to wait to see what my bone marrow recovers. When my counts come back, I'll have another biopsy in 3-4 weeks to determine if I am in complete remission. This is the best state for a transplant to be most effective.

It's kind of freaky that I'm functioning as well as I am with no bone marrow. I feel pretty good, although I still get transfusions for red blood and platelets when they drop below certain levels. My side effects with this treatment, except for a wicked rash, were minimal and I made it through with little drama once the chemo was over. I still have my hair, although that will change when I get chemo prior to the transplant.

I'll be here for about a week or so, till my counts come up, then I'll be able to go home for about a month to recover. All this time, the search for an unrelated donor continues. My sister was not a match, but I'm optimistic that a donor will be found. It's a very complicated process that takes time. Transplanting a person's blood factory, either with stem cells or bone marrow, is pretty intense. The more I think about it, the more science-fiction-made-real it becomes.

The entire process is a bit overwhelming, so I'm trying to take things one step at a time. For now, I've overcome the first hurdle. I'm looking forward to getting home, veering off the In-Room Dining menu, playing with Sadie and enjoying the Fall colors. I've come to appreciate even the gloomy days.

Kathy

CANcer + HEALth = CAN HEAL

Another Lost Fall

I love the seasons on the East Coast. Just when Summer bakes us a little too long, a crisp wind teases us with the promise of brilliant colors everywhere. Fall is my favorite season. But it's a bittersweet season for me. Whenever I get bad health news, it's always in the Fall. Unfortunately, this year is no exception.

I went for a bone marrow biopsy the day after I returned from my trip to Arizona. I found out late last week that the test did not deliver good results. I am no longer in remission. Dr. Forte sent me for a consult with Dr. Stuart Goldberg, Chief of the Leukemia Division of the John Theurer Cancer Center at Hackensack University Medical Center -- the number two rated blood treatment and transplant center in the country. I met with him yesterday, and learned that I will need more chemotherapy to get back into remission before proceeding with a transplant.

Chemotherapy regimens for relapsed Acute Myeloid Leukemia (AML) are complicated. The transplant process is completely mind boggling. By the end of the consultation, my brain hurt. The plan is for me to meet with the transplant doctors next Tuesday, after which I will be admitted to the hospital to begin the chemo treatments. I'll be in the hospital for about a month, and then recover at home until a match is found for the transplant. The transplant process, once I'm in remission again, could take 4-6 months.

This has been a rough week, to say the least. I still can't believe this is happening, after everything I've battled so far. It's like a final surge that one hopes will end the war. I hate to think about going back into battle so soon. And I'm devastated that I'll be on medical leave from work for so long again. Physically, I feel fine, although I know my blood counts are dropping. It's only a matter of time before I would end up in the ER. The foreshadowing of my previous post, The Suitcase, is downright creepy.

Although this will be my biggest fight yet, I've overcome worse obstacles. Fighting cancer has become my thing, my talent. I can't sing, cook or play sports, but I sure can fight cancer! I'd like to fight it in a public service kind of way, not as a patient anymore.

I've said it before, and I'll say it again: Hug your kids, kiss your parents, goose your spouse and give your pets a big squeeze. If you've always wanted to go somewhere, go. If you've always wanted to do something, do it. Life is too short and it could change drastically in an instant.

If I'm lucky, I might get to see some Fall colors from my isolation room in Hackensack. But if I don't, there's always next year.

Kathy

CANcer + HEALth = CAN HEAL