Thursday, November 22, 2012

Giving Thanks During Stormy Times

Thanksgiving is a loaded holiday for many people this year.  These last weeks have tested our patience, faith, and humanity.  As we come together today, we appreciate more, give more, and love more.

I've been through a few hurricanes since moving to the East Coast in 1999.  But Sandy was like nothing I ever hope to see again.  During those days of no power, living with friends, the gas shortage, the images of massive devastation and loss of life, I grieved for the Jersey Shore, Staten Island, Long Island and other places that are still suffering.  I heard Bruce in my head:
Everything dies baby that's a fact; But maybe everything that dies someday comes back; Put your makeup on fix your hair up pretty and meet me tonight in Atlantic City. (Atlantic City)
My firm provided incredible support, leadership and guidance during this crisis, and I struggled to find a way to help my team.  I shared the only advice I could think of:  Eat the ice cream first!  During this time of barely controlled chaos, we all realized how much we take modern conveniences for granted.  We also saw people come together in ways that we couldn't have imagined.  Call it what you will:  the power of the human spirit, witnessing,  living God's word, or just plain instinct, the world responded and tended to our wounds.

In the meantime, I continue to manage the complications mentioned in my last post from my lung surgery in August, 14 weeks ago. Issue #1: The invisible Ace bandage that felt like it was wrapped too tight around my core is still there. It's better, but not gone. Issue #2: The arm injury from positioning on the OR table is also still there, but also getting better. Issue #3: The burning in my skin has escalated and tests me like no other pain so far. Several experiments with drugs have not worked, but we're tweaking some dosages and I'm learning to balance the pain with the side effects. I have a new appreciation for people with continuous pain, every minute of every day. It can make you nuts. My pain specialist says I have Post Thoracotomy Pain Syndrome, which apparently is common after a major lung surgery. (I didn't technically have a thoracotomy, open lung surgery, but mine was major enough to cause this problem.) The good news is that this will heal on its own, eventually. An upcoming MRI of my back will show if there is nerve damage that may have been caused from the surgery that we can also treat.

As Sandy blasted through our lives, and during these medication experiments, my uncle Vic became gravely ill, his body finally shutting down after 9 years of serious complications from a massive stroke in 2003. (See March 4, 2012 post, What Doesn't Kill You...)  Vic passed away peacefully at home on November 17th, with his wife, Patricia, of 57 years by his side.  He was surrounded during his last days by his three sons, many grandchildren, friends, neighbors and caregivers.  A full military funeral was held yesterday, and Vic was honored as he so graciously deserved. Again, I heard Bruce in my head:
They say you can't take it with you, but I think that they're wrong
'Cause all I know is I woke up this morning, and something big was gone...
 The Mona Lisa, the David, the Sistine Chapel, Jesus, Mary, and Joe
And when they built you, brother, they broke the mold. (Terry's Song)
Ironically, Vic passed away on my second transplant birthday.  It was a day for recognizing the fragility of life and death.

June 2004

And on that note, I ask all of you to send prayers, positive energy, shooting stars, magic lightening bolts, whatever you believe in, to the Universe, God and all that is good in the world for Mya, the 10 year old girl I spoke of in my last post.  After undergoing a third and very difficult bone marrow transplant for AML in September, the transplant has failed and the leukemia is back.  Today, on Thanksgiving, she will receive the first of five days of blasting chemo (the same chemo that, in the past, put her in ICU with triple organ failure) to kill the cancer, after which she will get a lymphocyte injection from her last donor (her mother).  This process can be done a few times, and has worked in the past for some patients.  It's a long shot.  A Hail Mary.  But it's a chance.  Mya has been such a fighter, if she's not giving up, then neither should we.  Again, her story is here.

As we sit together today with family and friends, passing the turkey and gravy,  don't forget to pass around the hugs.  Take a moment to look up in the sky and hug yourself too.  Life is short and amazing.  Gratitude should not be limited to one day of the year.  It should be a way of life.  Happy Thanksgiving everyone.

Kathy
CANcer + HEALth = CAN HEAL 

Friday, September 28, 2012

This time I got to be the donor!

I've never been so glad to see the end of Summer.  This was a tough one. But, like everything in Cancer World, there were positive aspects to all the pain and stress. The lung resection on August 14th was rather brutal and my recovery is ongoing, but I was able to make a contribution to science, and that was important to me. The Adenoid Cystic Carcinoma Research Foundation (ACCRF) works with the University of Virginia in Charlottesville to conduct research on ACC. They have a tumor donation program, and I arranged with Hackensack Hospital to have them send my tumors to U of V for research projects. Since my ACC history is so unique (I am among a few dozen cases ever recorded with my specific condition), I was excited that I could contribute something that might lead to targeted remedies or even a cure for this particular cancer.

I am alive today only because of an anonymous man somewhere in Europe who donated his stem cells to the international registry for blood related transplantation (Be The Match). If there was some way that I could donate too, I was all for it.

As for the surgery, it was very successful, but more complicated than expected.  One of the tumors was close to my heart and my chest wall, which extended the anticipated two hour surgery to closer to five. Because this "minimally invasive" procedure was more extensive, I'm still fairly sore.  It feels like my rib cage has been wrapped in a giant Ace bandage and it's on way too tight.  Six weeks post surgery and I still can't get that damned invisible bandage off!  I'm managing much better, but moving pretty slow. 

Add to this an unexpected arm injury.  To position me correctly on the OR table, the surgical team had to strap my left arm up and over my head.  Prolonged lack of blood flow and stretching beyond anything Gumby would have tolerated, landed me at physical therapy twice a week to recover the use of that arm.  This too, is still sore, but manageable and much improved.

Lastly, the palms of my hands, feet and legs started burning a few weeks ago but with little visible evidence of the cause. It's not like a sunburn, which hurts on the outside. It's an internal burning that is very similar to Graft v. Host Disease of the skin (flashback to the early months of transplant recovery). My transplant team put me on a low dose of steroids to tamp it down, but it didn't work. The current theory is that it may be a type of neuropathy or a misfiring of nerves, brought on by the trauma of the surgery. I'm leaning toward another mystery response by my new immune system, which must be very upset that I put my body through the ringer again. Last year when I had a lung resection on my right lung to remove a transplant related infection, I had all kinds of mystery problems that no one could diagnose. They eventually resolved on their own, and I'm thinking this will too. With a bum left arm and burning hands, I wasn't able to type for any length of time, which is why this post is so overdue.

With all these setbacks impeding my planned recovery, I've been out of work longer than I planned.  But I hope to remedy that soon, since things will only improve from here and I have a busy Fall ahead.  Now that both cancers are under control, I can focus on getting on with life and figuring out ways to contribute more than just tumors.

I am closely following the story of a 10 year old girl named Mya, who is fighting a war at St. Jude Children's Research Hospital in Memphis.  Last week Mya underwent her 3rd transplant and is waiting for the engraftment to take so that her unthinkable pain and complications will subside. You can read Mya's story here.  It's so easy to get wrapped up in our day-to-day worlds and look only at that which demands our immediate attention.  But we owe it to ourselves and to each other to take a step back and give thanks for what we have, never forget that there are others who are far worse off, and look for ways to make a positive impact.  Taking action to improve the human condition is as much a part of our DNA as anything that science can detect.  It's what we do.  Please take a moment and sends prayers and positive thoughts to Mya and so many others like her.

Kathy
CANcer + HEALth = CAN HEAL

Sunday, August 5, 2012

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

How is it that Bruce always know just the right thing to say?  He's my inspiration for getting through this latest medical drama.  He's coming back to NJ in September, then to Pittsburgh in October (Mary and her family have no idea what they're in for) and to Glendale, AZ in December (get ready AZ friends).  There's a lot to do and I don't have time for drama.

In the month since my last post, I've been very busy.  The upshot is that things are going better than I could have hoped for, given the grim choices outlined in my last post.  

Although the biopsy confirmed that the "hot" spots are definitely cancer,  Dr. Georgiades successfully ablated the trickiest tumor of the bunch - the one in the hilar region of the right lung.  Now that that one is out of the way, Dr. Elmann will surgically remove the last two tumors with a VATS resection (a minimally invasive surgery that's done with scopes and a camera) on the left lung on Monday, August 13th.  I should be home in time to get tickets on Friday morning for Bruce's Pittsburgh show.  I'm in much better shape now than I was last summer, so recovery from this surgery should be manageable and relatively short.  Then this nightmare will be over!  

I know everyone was hoping the "hot" spots were a return of the  MAI infection, rather than cancer.  But Dr. G assured me that the tumors are old spots that we've been watching since 2008.  The fact that they grew and went from cold to hot is not a huge surprise.  If they were new spots, then I'd be pissed.  The fact that they're old means that they've probably been there since I first got ACCB in 2000. Knowing this made a HUGE difference in my outlook on all this.  

So, where's the drama?  Between the biopsy on the left lung on July 13th and the ablation on the right on July 20th, both lungs collapsed 25% about a week after each procedure, and I spent the last two weekends in hospitals.  Here are some highlights:
  • When I was just about to get sedation for the July 20th ablation at Hopkins, Dr. G told me that I had a pneumothorax (partially collapsed lung) from the biopsy the previous week and that we would have to postpone the procedure.  I put my foot down, which was hard to do because I was already face down on the OR table, strapped in with an oxygen mask on my face.  I took off the mask, looked up at Dr. G and wagged my finger back and forth, saying "No, no, no.  Here's the new plan.  You're going to insert a chest tube to fix this and we're going forward with the ablation."  Resigned, he agreed and we were off to the land of ablations.  The Operative Notes documented my insistence, which I found pretty funny.  The ablation was even trickier than the first one I had in 2008 when Dr. G had to pull a tumor way from my aorta with his magic needle to avoid a "catastrophic event."  The hilar region is a complicated mesh of arteries, veins, ligaments, lymphatic and bronchial vessels, often called the "root of the lung."  Squished in there was the tumor.  Three manufacturers' representatives observed from afar because Dr. G chose to use a new cutting-edge needle to control the burning of the tumor in such a vital area.   Dr. G had to position his needle parallel to and in between two blood vessels in order to successfully ablate the tumor. 
  • As he told me about this afterward, he said, "You remember that I told you I'm leaving?"   Dr. G is not one to joke around.  "What?!"  "Yes, I'm moving my family to Cyprus so that we can be closer to the rest of my family."  I felt conflicted between the good news of the ablation and the panic that was rising like an awakened volcano.  "When were you going to tell me?" I asked like a jilted teenager.  "I told you in the OR."  "I was unconscious!"  Typical passive aggressive man, I thought, breaking up at someone's most vulnerable moment.  "There aren't a lot of jobs over there, and it's kind of unstable, isn't it?"  I was trying to selfishly negotiate Dr. G's future.  Turns out the American Medical Center on Cyprus is building an entire surgical suite just for Dr. G.  He's leaving me in the hands of his closest colleague, Dr. Kelvin Hong, who co-wrote the gold standard textbook on ablations with Dr. G.  When someone saves your life, it's easy to become attached.  Dr. G knew this and handled my emotional response with humility and understanding.  I will miss him.  (Did I mention that he came in to ablate this tumor on a vacation day?)  I hope Dr. Hong can handle me.  We met briefly and he's very nice (he provided "technical assistance" during the ablation).  I'll see him for a follow up PET/CT in October.
If all this wasn't enough, I've been fighting a battle with Comcast for the last month.  Apparently, Maplewood has an agreement with Comcast for sole cable rights.  I've had no less than 8 appointments since July 9th and my service is still not fixed.  Here's my advice for all you Comcast victims:  1.  Always ask for a supervisor and get their name, direct phone number and ID; 2.  For billing problems, ask for the Retention Department so that they know you're really mad and about to cancel your account (even if you can't because your city is holding you hostage to a specific cable company); 3.  Always ask for an in-house technician for service calls.  If you don't do this, a contractor, who gets paid by the job and can't wait to leave your house for the next appointment, will make everything worse and drive you insane.

In the midst of all this craziness, I was surprised and grateful to learn that the church I attend, Prospect Presbyterian Church, held an all day prayer vigil for me on August 1st.  I'm not officially a member of this church, but I've been a supporter for a number of years.  I  am so thankful for their support and kindness.  Pastor Rick and Bruce have an equally optimistic view of the future, and I lean on this through good days and bad.  My countless thanks to them and all of you who have been in my corner through this last battle. 

Kathy
CANcer + HEALth = CAN HEAL

Sunday, July 1, 2012

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

Monday, April 16, 2012

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 

Sunday, March 4, 2012

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

Monday, January 16, 2012

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