Friday, December 9, 2011

Accept the gift and pay it forward. In that order.

It's that season again:  Thanksgiving, Christmas and other religious holidays, New Year's.  They're clustered together to make us all run around desperately clutching our charge cards, pumpkin pies and directions to the next family gathering or party.  It's an emotional time.  Everyone has a different combination of feelings to choke back (or not) while indulging in eggnog and snickerdoodles.  Although I have a jump on what I call the Five Stages of Christmas Stress (decorating the house, cards, shopping, wrapping and shipping -- I gave up baking years ago), I am only now processing the enormity of my Thanksgiving.

On a physical level, I was grateful to be well enough to drive up to Carmel, NY to spend the holiday with the Segers, my mother's side of my family.  Aunt Pat puts out an amazing spread and I look forward to it all year long.  Last year Thanksgiving was about a week after my transplant, and I was so sick, my diet consisted of narcotics and anti-nausea meds.  The year before I was in a different hospital being treated for leukemia before the 2010 relapse.  The doctors insisted that I have an abdominal CT scan on Thanksgiving, so I had a meal of chalky barium smoothies as part of the prep for the test.  This year, I was really ready for turkey, gravy, stuffing, all the sides and Pat's famous deviled eggs and apple pie.

Once I was stuffed with yummy food, I focused on the spiritual level of Thanksgiving.  It was overwhelming.  My gratitude list included the following:  eleven years of cancer survival, plain and simple, especially this last year when my odds were so scary (more on that later); my donor, without whom I would not be alive today; my doctors, who are amazing; everyone at my law firm, who have supported me in ways I never could have imagined; my friends, family and the loving people at my church, all of whom kept me sane; Mary, who comes to my rescue every time there's an unexpected emergency and in times in between; my first transplant birthday, which was a huge medical milestone; my visit with Mark last month, which was postponed several times (see a few pictures at the end of this post); Sadie, who keeps me in the present....  Oh the list goes on, and it's at this point that I become overwhelmed.  I work myself into a stress ball wondering how I can say thank you or somehow express my gratitude for helping me get through these unthinkable two years.

Then I take it a step further:  I've been diagnosed and treated for two separate cancers, one of which metastasized to my lungs, and the other recurred to the point where my doctors had to almost kill me in order to give me my only chance to live.  I've had doctors tell me numerous times since1999 either that my chances were terrible, or that I was out of options completely.  And here I am.  I keep stumbling past these land mines, and it looks like I might actually be on this Earth for a while longer.  How do I express my thanks for that?  Some of my conversations with God go like this:  "Come on, give me something here.  What am I supposed to do with all these gifts?  How am I supposed to pay it forward?  Specifically, a little help please."  Then, in church last week (thanks Pastor Rick), I realized that I'm skipping a step.  I have so much anxiety over how to show my thanks, I haven't fully accepted the gifts in the first place.  No wonder Thanksgiving makes me feel a little guilty for not doing more.

So I've decided to focus on just getting better so that I'm strong and alert enough to recognize the signs for ways to give back when they appear.  Just because I'm beating unimaginable odds doesn't mean I have to beat myself up over it, right?  First things first -- feel well enough to get back to work.  I'm going absolutely bonkers, now that I don't have any emergent medical crises.  I'm still at the tipping point when bad things can still happen as I ease off my most intense drugs.  I still have strange, annoying symptoms possibly from drug side effects, chemo side effects, lung surgery side effects, radiation side effects, or just seasonal allergies.  But with physical therapy, chiropractic visits, massages and lots of running around, I'm almost strong enough to take the plunge and return to work.  Once I've mastered assimilation back to professional life, we'll see what's next in terms of year round Thanksgiving.  Sometimes I have to remind myself that, with most things in life, I'm just not in control.

Hope you had a wonderful Thanksgiving, and I thank you all for everything you've done for me!  Enjoy the rest of your Holidays, and don't forget to count your blessings, all of them, and when you're finished, do it again.

With love and gratitude,

Sunday, November 6, 2011

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.


Tuesday, October 4, 2011

Latest Report Card: Above Average But Needs Improvement

School is back in full swing.  It's only a matter of time before report cards are due.  The frustrating thing about the school I've been forced to attend is that no one gave me a graduation date.  I know it's getting closer, but there always seems to be another test.  I was never an athletic person, so report cards became a tool of self measurement.  Maybe my medical report cards indicate how this battle is going, and why I've fought so hard these last 2 years, no 5 years, no 11 years, whatever.  Here are my current grades:

Lung infection diagnosis and treatment:  A
Several weeks after the lung resection over Labor Day weekend, I finally got the diagnosis:  Mycobacterium Avium Complex (MAC). This was very good news because, according to the Johns Hopkins Infectious Disease Guide, "Surgical resection of a solitary pulmonary nodule is considered curative."  True, I had more than a nodule -- more like a giant mass -- but my infectious disease doctor responded to my shameless begging and agreed that I should not to have additional drug therapy unless we have evidence that the infection remains.  Follow up CT scans are fine with me. Since the two most common forms of mycobacterial infections are Tuberculosis and Leprosy (now called Hansen's Disease), I was pretty relieved that this was one of the 100+ "atypical" strains.

Surgery recovery: B-, Needs Improvement
I'm slowly getting my energy back from the surgery.  The pain is far from gone, but it's better, and I no longer have to struggle with pain killers.  I went for a nice walk on Sunday, which felt great in the brisk fall weather. 

Battle against GVHD: To Be Determined
Late last week I noticed an annoying rash.  "This can't be another episode of Graft vs. Host Disease (GVHD)," I thought to myself, switching from denial to panic at any given moment.  "It's probably a reaction to sitting on my incredibly shrinking ass (not in a good way) for most of the last year," I told myself.  Forced to recognize that the rash got worse every day, I went to see my doctors yesterday.  They were mystified, since it doesn't look like classic GVHD.  They took a skin biopsy and gave me a 7 day steroid pack, hoping I'm having a drug reaction to something I was given during the surgery.  I'll find out on Friday if this is just a passing problem or if I have to go back on steroids for several more months.  Not only would this put my system back in a tailspin, but it would start that vicious cycle of being susceptible to more infections, such as the horrible CMV virus (only surfacing when my immune system is suppressed) and other problems, such as my recent lung complication.

One way or another, the rash will disappear, and I should feel pretty good for the Light the Night Walk.  Speaking of the Walk, we're less than two weeks away, so if you can participate in some way, walk or donate, please visit either the Lowenstein team page, or my page.  The team is 71% there and I am 86% to my goal!  Our team held a bake sale and a pizza party at the office, drawing sugar addicts, pizza fans, and all those sympathetic to the cause.  I'm so proud of everyones' efforts and generosity, especially during such hard economic times.

Generosity comes in many forms.  I recently received an email from an expert insurance litigator at my firm, Bob Chesler, who offered to advise people who have had trouble with their insurance coverage due to their cancer diagnosis. How cool is that?  Send an email to me at if you or someone you know would like Bob's contact information.

I'm looking forward to resuming my physical therapy sessions, and getting back to my  trusty chiropractor, Dr. Mike.  My back has been pleading with me for an adjustment, but my ribs have been objecting loudly.  My favorite month is here, and I plan to take advantage of it.  I won't be too hard on myself for a less than perfect report card.  I still have an A+ in the most important subject of all:  Remission.  I know I'm on my way to straight As, and that Graduation Day is coming.  Enjoy October and I'll see many of you at the Walk on the 15th!


P.S.  Please note the link on the right, under "My Blog List," for the Asbestos and Mesothelioma News.  I received a comment recently to one of my posts telling me of this organization.  It's so gratifying when someone I don't know finds my blog and considers it helpful.  Sharing information is critical when it comes to health and wellness.

Sunday, September 11, 2011

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. 


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!


Sunday, August 28, 2011

Stormy News

Well this has been an exciting week, on many levels.  Hope all my East Coast friends, family and co-workers are safe and sound.  It's still pretty windy around here, and I have no water, but I slept through most of the drama, and I suspect Sadie did too.  It's been a rough week, especially for D.C., Virginia and the Carolinas, with the earthquake and Irene.  (New Yorkers overreacted just a bit with the earthquake, in my opinion.  I lived in San Francisco for 10 years and had to walk home from work over glass and bricks in the middle of the downtown streets before the looting started after dark in a city with no electricity.  Remember that one during the World Series at Candlestick Park on October 17, 1989?  Now that was a shaker!!)

I'm still processing the stormy events of the last couple of weeks relating to my feeble self, including two consultations scheduled for Tuesday, one with a neurologist and one with a thoracic surgeon.  I'll try to be brief.  On August 9th I finally went completely off all steroids, having tapered my doses since March.  I now believe that going off steroids is worse than being on them.  My muscles went from uncooked spaghetti to cooked spaghetti, my GI track went into shock, I got headaches and, wait for it -- I started getting hemorrhages behind my right eye, filling the white part with blood.  Not a good look.  No wonder little kids stare at me when I go out.  Imagine an alarmingly pale 90 pound woman shuffling around, wearing a scarf (obviously hiding a bald or partially bald head), shaking like a leaf, with a bloody eye.  Would any of you think that that woman was NOT a crack cocaine addict?  Anyone?

Somewhere in the middle of this, I had a CT scan of my chest to follow up with that pesky infection that I warned not to get too comfortable.  I was, shall we say dismayed, to learn that it has grown bigger.  Much bigger.  Time for a lung biopsy.  I hate those.  The only thing that rivals having your bones drilled into is having your vital organs pierced.  Now we get to last week:
  • Monday:  My eye doctor assured me that there is nothing wrong with my eyes.  Good news!  I was convinced that I was getting cataracts (a risk from the chemo and radiation) or shingles.  (Yes, in the eyes.  A woman in one of my support groups had this happen to her). 
  • Tuesday:  Lung biopsy, local sedation only.  I was told that cultures would be grown, which could take a week or two, but that preliminary findings should be in by Friday, the day of my next clinic appointment.  On the way home, my doctor's office called recommending a brain MRI the next day for the headaches.
  • Wednesday:  Brain MRI and my 4th IV in less than 2 weeks (very stressful, since my veins are also like cooked spaghetti.  What is that really skinny kind of noodle?  Vermicelli?)
  • Thursday:  Perfect dental check up.  Good news!
  • Friday:  The Day of Answers; clinic with my transplant doctors.  The brain MRI was negative.  Good news!  The next step is a consult with a neurologist to figure out why the headaches got really bad with these eye hemorrhages (scheduled for Tuesday morning).  My theory is that after being on steroids for 8 months, my eyes are dry, causing the bleeds and headaches.  All are side effects of tapering.  I'm now self-medicating with Tylenol and eye drops.  I think all will be fine here.  The lung biopsy?  Inconclusive.  It only showed inflammation so far.  Assuming the cultures are also not definitive, my doctor wants me to have an "open lung biopsy" for further evaluation and subsequent treatment.  She said that it would be done surgically with scopes to "scoop out the infection."  Not good news.  Hence the consult with a thoracic surgeon scheduled for Tuesday afternoon.  This also means that I'll have to have another PICC line.  Ugh.
I'm not happy about this situation, but every time I tell someone, I burst out laughing.  It just seems so ludicrous that I would now need lung surgery.  I'm going to lobby to have it done asap.  My cough is getting worse, I'm now getting winded, and I don't want my new immune system to be so taxed that I flare with GVHD, requiring me to go back on steroids.  The sooner the better, even if I'm stuck in the hospital over a holiday weekend.  (Weekend TV is so awful!)  I'm going to tell the surgeon that I have to recover by September 13th so that I can go to the taping of the Daily Show with Jon Stewart in New York with Michael, Steve and Francine.  What could be a bigger motivator?
There actually is more good news to report, so let's end this on a better note.  My appetite is slowly getting better.  The tremors keep me from gaining real weight, but I'm tapering off that medication now, so next month I should be able to sign my name again and gain a few pounds.  My stomach is still not a happy camper, and I'm a long way from a cup of coffee, but I've expanded my boring diet.

Also, my birthday was Wednesday!  (The day of my 4th eye bleed and the brain MRI.)  Cathie and Cari brought me dinner, presents and a fabulous dairy free dark chocolate cake -- part of my expanded diet.  (It gets all melty and yummy when re-heated.)  And I had countless birthday wishes on Facebook, cards, phone calls, and more presents.  My biggest gift was just making it this far.  It was the first of many upcoming milestones.  I'm so happy to still be here, I don't even mind the insulting solicitations from AARP!

Another great update is that both teams, Lowenstein Lights the Night (NJ/NY and Palo Alto), are growing with walkers and many generous donations have been made.  See my last post, the link above and my personal homepage about this event.  I have to deal with this lung problem soon so that I'll be strong enough to make it around the 2 mile course.

I have it on good authority that things may be a little rocky for now, but that I'll get through it just fine.  I'll keep you posted as to the surgery date and estimated day of release.  For now, there's not a lot I can do other than watch the trees blow (surprisingly cathartic), read my book on my Kindle, and have myself a piece of melty dark chocolate birthday cake.


Monday, August 15, 2011

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!


Friday, July 15, 2011

The lady in the teardrop dress

Ever remember something from a dream, or series of dreams, that you had as a little kid?  Last week, as I was driving home from visiting my friend Linda in hospice (see my last post), a memory pushed its way into my consciousness for the first time in many decades. 

I don't really remember my dreams.  If I had to list every dream that I can remember, there may be two or three, total.  And with all the chemotherapy I've had in the last two years, "chemo brain" has really taken its toll.  (See my Jan. 19, 2010 post on this subject.)  But that day, thinking about Linda, I remembered my dreams about the lady in the teardrop dress.  I must have been about five or six when I had them.  All I remember is that she was really nice and pretty, she wore a teardrop shaped dress (whatever that is), which I think was gold, and I was excited whenever she came to me.  I can't remember what she said, what we did or anything else about the dreams. I just knew that they were special.

When Linda relapsed, I went into a bit of a spin.  Linda's recovery was going great, better than mine.  There was nothing that anyone could have done to prevent her from relapsing, and I knew that it could have been me just as easily as her.  It was very sobering and difficult to process.  But I think that the lady in the teardrop dress came back to me, as a memory this time, to bring me a message of comfort:  I'm going to be ok; she is with me and will stay with me.  Maybe she's an angel.  Maybe I made her up in my dreams as a gift to myself when I was little.  It doesn't matter where she came from.  She helped me focus on the loving aspects of Linda's tragic ordeal.  And there were many.

Linda died earlier this week, on July 11th, in her mid 50s.  Today was the funeral and burial.  As I left the cemetery, her husband, Joe, said, "Kath, you have to beat this thing -- especially now that she's gone."  What Joe didn't know was that, in a private moment with Linda at the hospice center, I made her a promise:  to do all the things that we were planning to do, now for both of us.  We vowed that when we recovered, we would get involved with fundraisers, help with donor drives, educate people about leukemia, help other patients, speak out as much as possible.... I will keep my promise to my friend.

I am indescribably grateful to the Federico family, Joe, Marc, Jon, Michael, Pete and Yolanda, not only for the love and tenderness they had for Linda, but for the love and support they have given me.  They, along with the lady in the teardrop dress, made these last three weeks truly amazing.


Wednesday, July 6, 2011

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.


Monday, June 13, 2011

Change of Plans

At the beginning of my last post, I posed the question,
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?
The plan for ablating the newly discovered lesion in my right lung on June 15th has been put on hold for three months.  It appears that taking action when I'm stronger and things are, well, closer to "back to normal," is a better way to go.

I took my reports from Johns Hopkins to Dr. Rowley, who reminded me that three things can "light up" on a PET/CT: inflammation, infection and cancer.  Dr. Rowley suspects that the lesion might actually be an infection rather than a tumor, which would be great news!  (I never thought I'd be hoping for a lung infection.)  He also told me that inflammation from a radiofrequency ablation may trigger GVHD.  That would not be good.  Ablating an infection instead of a tumor would also not be good.  He consulted with Dr. Georgiades and they decided that, since ACCB grows so slowly, it's better to ablate when we are able to confirm that the lesion really is a tumor and when I'm not at risk for triggering GVHD.  The plan now is to have a chest CT in two weeks to see, what, if any changes appear.  Because I haven't had any symptoms of infection, I suspect that the new lesion is a tumor, and if it is, I'm off in September for RFA #5 to ablate tumor #8.  In any event, that lesion shouldn't get too comfortable....

Other aspects of my recovery are status quo:  I'm still having trouble eating, my appetite is pitiful, the tremors are coming back as I taper off the steroids for the third time, and I'm still hovering around 93 pounds.  On the upside, I feel like I'm getting stronger, I'm able to do more, and I'm seeing more friends and extended family than I have for the last nine months.  Because my blood counts are so good, it's safe for me to resume some of the things I used to do (like going to church, taking walks, etc.) and this keeps me sane.  I've also been going to support groups, through which I've been able to network with other survivors and learn about projects, research and events relating to blood cancers.

Although my days are busy when I'm feeling well, I'm antsy to get on with it.  Enough with this recovery stuff.  I never imagined that I'd measure my progress by the seasons.  Transplants are hard on people with Type A personalities.  I've never been a very patient patient.  But that's how it is, and I'll get there eventually.  The most important thing is that I'm in remission and I'm getting stronger.  If only someone would tell my tummy!  For now, I have three immediate goals:  recover enough to return to work, get rid of this lung lesion one way or another, and get medical clearance for a glass of pinot noir!  That's not too much to ask, is it?



Saturday, May 28, 2011

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.


Monday, May 16, 2011

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....



Saturday, May 14, 2011

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.


Thursday, April 28, 2011

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.



Thursday, March 17, 2011

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,


Saturday, March 5, 2011

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!



Sunday, February 20, 2011

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.



Wednesday, January 19, 2011

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.