Unsolved Mystery and a Fire Averted

I’ve never been good at solving mysteries.  My last post included what I thought was the source of that chronic four month old cough:  an endopulmonary lesion.  The doctor said it was "a flap-like piece of tissue that was partially blocking a vital airway."  Although the pulmonologist was able to push this lesion aside with his scope, he said that doing nothing could cause an obstruction that may lead to infections like pneumonia, and that it had to come out.  He referred me to an interventional pulmonologist who could surgically remove the "flap" with a laser.

Off I went, to yet another surgical consult.  The surgeon, a well respected doctor from Sloan who recently moved to Hackensack’s Cancer Center, was all business.  It was clear that he thought very highly of himself. 

While filling out the surgical consent form, he casually mentioned that this procedure carries a “slight risk of an airway fire.”  I fought hard not to burst out laughing.  “Did you just say ‘fire’?”  Without looking up he said, “Yes.  We may have to inject oxygen, since we’ll be breathing for you.  With a laser procedure, injecting oxygen could cause a fire.”  “So then don’t do that!”  I could hear my voice getting shrill.  “Oh, it’s very rare.  But if it does happen, it could be life threatening.”  “No shit.”  I wasn’t laughing anymore.

“Well, could you keep a fire extinguisher handy?”  I was trying to get this guy to crack a smile, which may have calmed me.  No luck.  “Like I said, it’s very rare.”  “Look,” I said, “I need to be able to yell at the Springsteen concert five days after this surgery.  Will I be able to do that?”  “Yes.”  Still no indication that a human being was inside the form of this doctor.  I looked at the resident for help and he just smiled weakly.

I decided to go on vacation before the procedure, just in case things went south.  I spent a week in Arizona, finally able to check in on my father for the first time since I relapsed.  He's in a nursing home in Phoenix for dementia, and my mother, sister and I were able to celebrate his 89th birthday with him.  He recognized all of us and is just as sweet as ever.  I helped my mom and Lynda with some appointments and errands, and got together with several friends.  Then I was off to Alabama to surprise my grandaunt for her 90th birthday.  Mike and Belinda, from Williamburg, VA, met me in Birmingham and Karen, in from Rockville, MD, drove us all to Tuscaloosa.  When Aunt Amy opened the door, I thought she was going to fall over.  It was great fun, and as you can see, she's quite the partier.

Within a week of returning, I was in the OR, praying for a complication-free surgery.  Thankfully, I didn’t wake up in the burn unit, and all went well.  I was relieved I didn’t have to title this post, “Fire in the Hole!”  The odd thing was that Mr. Personality didn’t find anything to remove.  He said that there were no obstructions and that my airways looked “pristine.”  He saw a slight protrusion of cartilage and took a biopsy, then called it a day.  With no abnormalities, he said it was unlikely the surgery would improve my cough.  All that wasted stress about a fire and my cough wasn’t going to improve?  “What about that flap of tissue the first doctor saw?”  He literally yelled at me, “Stop calling it a flap.  There is no flap.”  The plot to this still unsolved mystery thickened when, once the effects from the procedure subsided, my cough was actually better.  It’s now almost entirely gone. 

I’d love to get the two pulmonologists in the same room with each other, but since I’m better now and there’s no longer an imminent danger, they’re too busy with sick people to investigate what the heck happened to me.  All that matters is that my airways are fine, my cough is better and the Bruce concert was over the top fantastic. 

It was a milestone for me to see Bruce live again.  I was first diagnosed with AML a couple of weeks after I saw him perform at Giants Stadium, just before it was torn down in October 2009.  During the next year, I wondered if I’d be here to enjoy another tour.  Listening to him that night, seeing how much joy and hope we can give each other, I marveled once again at the gift of life and the unsolved mysteries that turn out okay in the end.

Kathy

CANcer + HEALth = CAN HEAL 

What doesn't kill you...

Finally, my latest Mystery has been solved!  You may recall that the latest in a series of Mystery problems (all deserving of capital Ms) has been a chronic cough along with shortness of breath.  My inability to talk very long without lapsing into a coughing fit began before Christmas.  Scans, tests, medications and inhalers didn’t help, and this current episode of my version of House was finally solved this week.  It turns out that I have an endobronchial lesion in one of the main airways in my right lung.  I learned that this is a rare condition (no surprise there).  This was found when I had a bronchoscopy as a last resort.  Upon waking up from this incredibly uncomfortable test, my doctor told me the lesion has to come out and pointed me to an interventional pulmonologist who can remove the lesion with a laser during another bronchoscopy.

Okay, let’s look at the bright side:  1.  No more Mystery.  We know what’s going on and what to do.  The doctor who will fix this has a reputation for being the greatest thing since Batman.  2.  It’s not cancer.  3.  It’s not Graft vs. Host Disease.  4.  The treatment doesn’t involve scalpels or chest tubes and may be a same day procedure.  5.  My cough will finally be gone, allowing me breathe much easier.  It’s all good!

But, another surgical procedure?  Are you kidding me?  This brings me to my latest mental musings.  There’s a new Kelly Clarkson song on the radio, What Doesn’t Kill You, referring to the phrase, “What doesn’t kill you makes you stronger.”  She is, of course, singing about becoming stronger after a romantic breakup.  What pop star wouldn’t use the phrase in this context?  But I’ve been thinking a lot about this rather clichéd saying, often used when people don’t know what else to say.

Sometimes it’s true.  What doesn’t kill you does make you stronger.  I suppose I can claim this to be true on several levels.  But my first response is, what doesn’t kill you just doesn’t kill you.  My second response is, what doesn’t kill you makes you tired. 

My aunt Pat, a full time caregiver for my uncle Vic, agrees with me on this.  Vic had a devastating stroke in 2003, which left him paralyzed on one side of his body.  His life has become a daily struggle in countless ways.  Vic was a Marine, a protector, a jack-of-all-trades, the strongest man I’ve ever known – a badass with a big heart.  What didn’t kill him did not make him stronger, it left him broken. 

Caregivers are put to the test just as much, sometimes more, than those suffering from a major crisis.  Pat said it best:  “What doesn’t kill you makes you smarter and wiser.”  Furthermore, she and I, along with so many others, are living proof that what doesn’t kill you tests you, hard.

After all that testing, fatigue, wisdom, and sheer survival, in the end, there is one fundamental truth, at least for me:  What hasn’t killed me makes me grateful, every moment of every day.  And that, I must admit, makes me stronger. 

It all comes back to gratitude.  In addition to curing this cough at the end of the month, I hope to be taken off my last transplant medication this week, and I’ll be receiving my first round of vaccinations (I’m almost 16 months old, and need to have my baby shots all over again).  I’ll also be traveling this month for the first time in two years.  I’m going to Arizona and Alabama in less than two weeks to visit friends and relatives.  My father in Phoenix turns 89, and my grandaunt in Tuscaloosa turns 90.  I’m calling it the Senior Circuit.  So yes, as always, there’s much to be grateful for. 

Kelly Clarkson’s heart is in the right place.  I should probably stop thinking so much.

Kathy

CANcer +HEALth = CAN HEAL

New Year, New Challenges, New Spin on Life

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

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

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

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

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

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

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

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

Niki, Victor and Kathy January 5, 2012

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

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

Kathy
CANcer = HEALth = CAN HEAL

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,
Kathy
CANcer + HEALth = CAN HEAL

Finish Lines

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

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

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

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

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

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

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

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

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

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

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

Kathy
CANcer + HEALth = CAN HEAL

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 k_seeley@comcast.net 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!

Kathy
CANcer + HEALth = CAN HEAL

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.