I did NOT see this coming.

“To be fully alive, fully human, and completely awake is to be continually thrown out of the nest.” Pema Chödrön  (Thanks, Georgette, for the amazing quote.)

I must be fully alive, fully human, and completely awake all right, because in the last two weeks, I was tossed out of the nest, again. I thought I was used to crashing and burning, eating dirt, and having to triage my wounds. But you never get used to it.

On a blistering June 20th, I drove down to Baltimore to ready myself for a follow up PET/CT (a combination of two scans) with Dr. Georgiades at Johns Hopkins Hospital. After the test, Dr. G. gently informed me that there were four new "hot spots" that now need to be treated. "Hot" usually equals cancer. "We need to make a plan," he said, seeing me deflate before his eyes. "Yes, a plan," I echoed. I did not see this nest-tossing-splat-on-the-ground coming. 

Let's recap: Before the days of leukemia, you may remember that my fight was limited to a head and neck cancer that appeared in a gland in my breast in 2000 (the treatment for which gave me leukemia nine years later), called Adenoid Cystic Carcinoma of the Breast (ACCB). Ten metastatic tumors were found in my lungs in October 2006 and after one left lung surgery and four radiofrequency ablations (RFA), they were all either removed or killed. I was back in the nest for awhile.

Fast forward to today:  We had been watching one left lung lesion that grew a little since 2008, so I scheduled another RFA for the day after my tests, just in case something sketchy appeared. With this new "hot spot" news, Dr. G. ablated one of the spots the next day, and I drove home the day after without so much as a band-aid. It was the easiest surgery ever. But because two of the remaining three are in dangerous locations, he felt RFA was too unsafe, and he wanted me to consult with my surgeon. I negotiated hard, but he stuck to his guns and used the 'ol "it's for your own safety" argument. 

Crushed, I sent my reports and images to my surgeon, Dr. Elmann, and pretty much spun out of control last week waiting for an appointment to make a new plan. Assuming this may require two surgeries, one on the left lung and one on the right, I braced myself for another medical leave from work and months of pain and crankiness.

Today, yes Sunday, I finally met with my Dr. Elmann, and he threw me a curve ball. Last summer, because my immune system had been destroyed and I couldn't fight off infections, I developed a whopping lung infection called MAI (also MAC). Dr. Elmann removed a large mass in September (not the easiest surgery ever), but I couldn't have the super extreme oral medications that some people get because I was too weak, underweight, and my GI track was shot. Dr. Elmann now thinks these "hot spots" are a return of the MAI infection. Cancer and MAI both show up as "hot" on a PET/CT scan and they look the same. They may not be cancer at all!

Finally, a plan:  Biopsy at least two of the hot spots in the left lung to see what we're dealing with.  If the biopsy comes back as MAI, I will begin the super extreme drug regimen (with lots of possible creepy side effects) for 10-12 months with repeat CTs to make sure the spots are going away.

If the biopsy comes back as cancer, I'll have another laparoscopic surgery on the left lung to remove the spots that are in bad locations, and return to Dr. G. for an ablation on the last tricky spot in the right lung. Dr. Elmann actually thinks RFA may be the safer option (I know Dr. G. can do it!), even though it's tricky, because surgery on this lesion would mean removing an entire lobe of my right lung with a gut-me-like-a-fish procedure that I can't even bring myself to describe. That's not going to happen. Trust me on this.  Although Dr. Elmann made me wait a week for an appointment, he's the first surgeon who ever recommended surgery as a last resort. 

I doubt that Pema Chödrön had infection v. cancer in mind when she wrote about being "fully alive, fully human, and completely awake."  Now able to move beyond my imagined injuries resulting from this latest tossing from the nest, I have once again returned from the Dark Side.  The rest of 2012 may suck a little, but at least there's a good chance that these dramas will soon end and I can climb back into the nest for awhile.

Kathy

CANcer + HEALth = CAN HEAL

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