Friday, November 7, 2014

Room 207

November is here, and I'm finally coming out of my cocoon, where I unplugged from All Things Cancer for a while.  I finished having 15 radiation treatments at Johns Hopkins on October 28th and raced home to reunite with Sadie.  I missed her terribly, and since returning home I can't keep my hands off her.  She was very happy to see me until she realized I had been gone for a long time.  Then I got the look:  She practically had her paw on her hip, tilted her head and meowed, "Where the f*** have you been?"  

All went well with the radiation treatments.  Since the cryoablation was in the same area 3 weeks earlier, it's hard to tell what soreness was caused by what.  I began to have a hard time swallowing, which was caused by inflammation from radiation near my esophagus.  But that eventually went away.  After I got home, I developed a burning rash at the site of the radiation near my collar bone, which is still annoying me.  Graft vs. Host Disease (GVHD) is starting to kick in, which happens whenever my new immune system takes a hit. And, as predicted, instead of sleeping my usual 10 hours a night, I'm now sleeping about 12.  But I also see signs that the Cone of Cancer I described in my last post has taken a beating.  For a year or more I've had extremely sharp pain in my chest whenever I sneezed or coughed.  I'm very happy to report that this no longer happens.  My left side is still a mess.  I have chronic pain in my left ribs and nerve pain in my left arm from the last lung surgery in August 2012.  It will be awhile until I can wear the shoulder strap of my seat belt across my chest, but I think I might continue to notice less pain in some places.  It's been a long time since I've been able to say that!

I was able to keep myself busy while in Baltimore.  I used my appointments with Dr. Hales to ask about current trends in radiation research, I spoke with several Adenoid Cystic Carcinoma patients who were trying to navigate the choppy waters of treatment options, and I even found the chutzpah to suggest a future research project in which Dr. Hong and Dr. Hales could team up for the benefit of ACC patients around the world.  I met up with Diane and her husband, Rick, when Diane had her first RFA with Dr. Hong.  A few days later, I met up with Len and his sister and brother-in-law as Len also had his first RFA with Dr. Hong.  Since my radiation treatments were managed by Dr. Hales, Dr. Hong was confused as to why I kept showing up in his recovery rooms.  I also got together with Michele, a very brave ACC warrior, and her husband Tom, a very brave Acute Myeloid Leukemia survivor.

Adding to this community of survivorship, I stayed at Hope Lodge, one of the American Cancer Society's free housing sites for patients and their caregivers.  I mentioned in my last post that I happened to be assigned to Room 207, the exact same room I had when I underwent another 15 day radiation plan to the other lung almost two years ago in early 2013.  There is instant acceptance at Hope Lodge because, despite the fear, everyone is hopeful and supportive of everyone's battle against a common enemy.  

Most of us feel like crap, yet everyone finds a way to laugh, tell jokes, share stories and welcome the distractions of a lively game of bingo or a community dinner.  One night I taught an elderly couple how to play Candy Crush, and after the woman retired for the night, I later saw her husband glued to the computer in the library, sitting in the dark, determined to make it past level 5.  Several times a week local medical schools, churches, community groups and past residents of Hope Lodge prepare dinner for everyone, giving us a chance to talk about whatever might be going on while getting a break from meal preparation.  Since most of you know that oatmeal in the morning is the extent of any meal preparation that I engage in, this was a huge benefit that I greatly appreciated.

It's hard not to make new friends at Hope Lodge.  I got together with Jake and Lisa, two friends from when I stayed there the first time, and I hope to stay in touch with my new buddies, including Vern, Patrick and Donna, and others.   The managers, staff and volunteers are truly dedicated to providing support and comfort in any way they can, during very difficult times for many people.  It reminds me of one of my favorite Bruce songs:
Well I will provide for you
And I'll stand by your side
You'll need a good companion now
For this part of your ride
Leave behind your sorrows
Let this day be the last
Tomorrow there'll be sunshine
And all this darkness past
(Bruce Springsteen, Land of Hope and Dreams)
As long as I can keep my feet firmly on the ground (I bought cleats to put over my shoes this winter!), I have reason to celebrate the end of a very difficult year.  November 17th is the 4th anniversary of my stem cell transplant -- my second birthday.  I still can't believe I got through that.  And I'm confident that the Cone of Cancer is dead, leaving me able to recover some energy and work on downsizing all things material (and unimportant in the grand scheme of things) in preparation for my move to warm and sunny Pittsburgh.  Thankfully, I have no plans to return to Baltimore before early February, when I'll have another set of scans.  

This holiday season I wish that all those in pain and feeling alone can find their Room 207 -- a place for hope, love and community -- for this part of the ride, and always.  



Sunday, October 12, 2014

Sports, donuts and a battle against a Cone of Cancer

There seems to be an odd connection between Baltimore's sports teams making it to the playoffs and my radiation visits to this loyal, fan-driven city.  In January/February 2013 I was here for a month having radiation treatments to a stubborn tumor in the hilar region of my right lung -- a very dangerous area -- followed by a cryoablation to a large kidney tumor.  See 2/25/13 post.  It was a very stressful time, but I was distracted by watching the city whip itself into a frenzy with the Ravens going to the Super Bowl.  I'll never forget the sea of purple at Hopkins as I walked in every day to get zapped.  Everyone wore football jerseys and there were purple donuts and balloons everywhere.  I watched the game at Hope Lodge with my new found kindred spirits as we feasted on a spread of football food and, for the night, we all forgot that we had cancer.

Here I am again, back at Hope Lodge during the championship series with Baltimore now in a sea of orange, rooting for the Orioles.  Even more bizarre is that I'm staying in the exact same room I had last time!  The Orioles have to advance to the World Series, just so I can have an orange donut and witness the staff in different sports jerseys.

You may remember in my last post I mentioned that I would have to have radiation to an "area of thickening" that Dr. Hong saw when he performed the cryoablation in the lining (pleura) of my left lung a month ago.  He referred me back to Dr. Hales, my back-up pitcher (couldn't resist) whenever Dr. Hong doesn't feel that ablations are the safest option for whatever is going on.  The top of my left lung, or the apex, is shaped like a cone leading down to the rest of my lung.  This cone starts just 2 cm. down from the top of my shoulder.  This thickened area is like a caking that goes around the top of the cone.  Treating this Cone of Cancer should be done sooner rather than later because the pleura is like a 2 layered slip-and-slide, allowing me to breathe in and out without pain.  If the slip-and-slide gets stuck, well, then there's pain, not to mention cancer getting the upper hand.  

Dr. Hales told me that coming up with a treatment plan that kills the Cone of Cancer while sparing the healthy tissue inside the cone is tricky.  Is there any other way with me?  Sometimes I feel like my purpose is to challenge the medical industry's commitment to innovation.  

There are a lot of different types of radiation.  Some machines treat areas that are diffuse, like this Cone of Cancer.  Some machines are very precise, honing in on a very targeted area.  Both are used for a host of reasons depending on the type of cancer, the area in the body, the size of the target, the ability of the patient to tolerate the treatment, the dose that's required to kill the cancer and a lot of other variables.  The science is overwhelmingly complicated.  Dr. Hales and his team of physicists decided to treat me on a new machine that Hopkins just got last month.  The Versa HD (high dose, not high definition) was just launched by a Swedish company called Elekta in March.  It combines several types of radiation delivery methods so that I get precision and diffuse treatments wherever I need them.  Plus, the beams actually bend to treat areas like this cone, which has a messy shape, while protecting the healthy tissue inside.  I'll have 15 sessions total -- three down, 12 to go -- and I'll be home by the end of the month.

The effort of packing and moving to Baltimore was difficult, especially after last month's cryoablation.  I'm sleeping 10-11 hours a night (I know!).  Fatigue always sets in toward the end and after treatments, so I can't imagine my energy level a month from now.  I'll be sleeping as much as Sadie!  Oh, I miss my kitty.  She's in good hands with my neighbor, Michael, whose sons will hopefully give her a workout every now and then.  As for my pain, time will tell with that too.  Since the cryoablation and the radiation treatments are in the same area of my upper pleura, I can't tell what's causing what and what might be temporary as opposed to ongoing.  I'll just be glad to have the treatments over so that I can regain my energy and strength over the next several months as I slowly downsize for my move to Pittsburgh in the spring.  

For now, I'll keep rooting for the Orioles and stay true to my temporary home.  I'm told that they rally at the last minute, when things look really grim.  Who does that remind you of?  I'm determined that by the time I leave here, I'll have had my orange donut.



Thursday, September 18, 2014

10th Ablation and No Free T-Shirt!

One would think that with my 10th ablation I would get something -- a free T-shirt, car wash, crock pot, something.  But no.  Just one less tumor, trying to take over my beaten up left lung.  That's actually quite a lot.  I did get a free overnight stay in a private room on the 11th floor of the Zayed building overlooking the Baltimore City Juvenile Justice Center.  Hey, it was a nice view.  But before I get to that, I have to again apologize for another rerun of previous posts you may have received if you follow this blog by email.  I enlarged the font for several past posts for us "seasoned readers" who can't see crap anymore, and blammo.  Blogspot spit out a couple of updates as if they were written yesterday.  Not so.  Sorry for the confusion.

I had a pretty busy week, starting on Wednesday, September 10th.  I took the train to Pittsburgh for a working vacation.  On Thursday, Mary and I drove around the city looking at potential apartments and neighborhoods for my relocation next Spring.  That was very productive.  On Friday, I went for a consult with a potential local oncologist whom I hoped would meet my rather rigorous standards.  He didn't; it was a big waste of time that could have been avoided had he actually read the letter I wrote him about my needs.  The day was redeemed when we spent way too long at the T-Mobile store upgrading my phone.  I'm pretty happy with my new toy, thanks to Sarah's savvy assistance.  Everyone needs a 16 year old for such life altering events.

Saturday was an Adenoid Cystic Carcinoma Organization International (ACCOI) patient meeting, where five ACC survivors and their family members met over lunch.  It was an amazing group of incredible fighters.  We shared our very diverse stories, treatments, doctor recommendations and tips for navigating the treacherous waters of an unpredictable and brutal cancer.  There was humor, hope and priceless information, not to mention newly made friendships.

On Sunday, I took the train to Baltimore and met up with an extraordinary ACC survivor, Michelle, whose feisty strength and grace was contagious and humbling.  I reported to Hopkins at six a.m. Monday morning for a cryoablation (using freezing gas instead of radioactive heat, as with RFA) on a left tumor in my pleura (the lining of my lung).  Everything was going swimmingly, as I shared my preferences for anesthesia drugs and settled onto the familiar OR table.  The next thing I remember is waking up very nauseous, demanding a vomit bin and a hit of dissolvable Zofran.  Then there's a gap.  I woke up again, feeling much better and was told that Dr. Hong was going to admit me due to a complication that occurred in the OR and because I "looked awful."  I forgave him and asked about the complication.  Apparently, I bled into my lung, which can be hard to control, serious and just not good.  I went into a coughing fit, under sedation, and coughed up most of the blood.  I assume I wasn't getting zapped at that particular moment.  Whatever I swallowed came up during the gap in my memory while in recovery.  The only evidence I had of any of this was my already chronically sore ribs were very painful from coughing.  How I avoided a pneumothorax (collapsed lung) during this drama is beyond me.  Thank God I was at Hopkins, is all I have to say.

Bleeding is an extremely low risk for these procedures.  They happen so rarely, patients aren't even quoted a percentage when being told of the risks.  Truth be told, I may have brought this on myself.  You know when the pre-op nurses call to tell you to stop taking any NSAID or asprin products 7 days prior to surgery to avoid bleeding?  Well, I kind of forgot about that until 2 days prior to surgery.  Note to self!!

The ablation itself was successful, notwithstanding the added adventure.  I was discharged the next morning, took the shuttle to my hotel, packed my stuff and caught the 2:46 train to Newark.  Pretty productive week, right?  Because the pleura is a hotbed of nerves, avoiding nerve damage is nearly impossible.  I feel pretty sore and since the ablation site is just above my heart, I will be tucking my seat belt under my left arm for a while.  And, of course, my left rib cage is very unhappy.  Could be worse, lots worse.

So what's next?  My right lung seems to be behaving.  My left lung is the problem child.  Near the site of this ablation, cancer is causing a thickening of the pleural space such that an ablation isn't the best option for treatment.  Radiation would be able to treat the area all at once.  So I'm waiting for Dr. Hales to call with a treatment plan.  Assuming Hope Lodge has room for me, I'll be spending some time in Baltimore, probably next month.  Aside from the obvious frustration that another battle is in sight, I'm just hoping that the net nerve pain at the end of it all is not worse than it already is.  Now that I don't work anymore, I have way too much to do with ACCOI and planning my move to Pittsburgh.  

Keeping my eye on the big picture, today is yet another milestone for me.  I was first diagnosed with ACC 14 years ago today, about a year after moving to New Jersey.  Just like ablations, there is no prize for surviving another year.  The reward is staying alive to fight with others for knowledge and a possible way to turn this cancer off.  In between the battles, there are fun times to be had, friendships to forge, and bridges to cross.  It's not like I need another T-shirt anyway.  


Sunday, August 3, 2014

More New Beginnings

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

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

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

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

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

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

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

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

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


Sunday, June 15, 2014

Monkey Mind

Have you ever tried really hard to relax?  How about concentrating on reaching a meditative state?  It's impossible by definition.  I've tried sending everything to my mental trash folder, and it never seems to work for me.  I have terrible Monkey Mind. 
Buddha described the human mind as being filled with drunken monkeys, jumping around, screeching, chattering, carrying on endlessly. We all have monkey minds, Buddha said, with dozens of monkeys all clamoring for attention. Fear is an especially loud monkey, sounding the alarm incessantly, pointing out all the things we should be wary of and everything that could go wrong.    (Huffington Post Blog, BJ Gallagher)
If only there was a drug for this affliction; I'd be the first in line.  I went to Hopkins on June 2nd for a Radiofrequency Ablation (RFA) to an upper left lung tumor.  The procedure went great.  Easy peasy.  Dr. Hong was all smiles afterward and once my chest x-rays showed that all was well, I left with Karen the same day.  I drove home the next day and worked from home the day after. 

I did notice that I had two little red marks at the site on my upper back, and thought, "Hmmm, one tumor, two needle marks?  Oh, well."  When I called for a copy of the operative report later that week, I was stunned at a something I read.  It described the prep for the surgery, and then this:  "At this time a 25% pneumothorax was identified on the left side," followed by a chest tube placement.  Whaaa?  I had a collapsed lung before the RFA even started?  How long have I been walking around with that?  The monkeys were going crazy.  As I speed dialed Dr. Hong, I thought, "Um.  Dr. Hong?  Excuse me, but WTF?  Did I walk in with this?  Did you forget to mention something?"  Of course I had to leave a message and wait with the monkeys till he called me back.  "Oh no," he said.  "If you had a 25% collapse, you would have known it."  He then proceeded to advise me not to read the reports.  To this I replied, "Dr. Hong, have you met me?"  We both just laughed as my blood pressure receded.  Yes, I had a small pneumothorax from having my lung pierced by the needle, but it resolved itself before I woke up so I never even knew about it.  It was such a non-event, he never thought to mention it.  Hence the two little marks -- one from the needle, the other from the tiny chest tube.

In Cancer World, it's very hard to shake off Monkey Mind.  We assume that every new symptom of anything is a sign of more cancer.  A headache must be a brain tumor.  A new age spot must be skin cancer.  A chest cold means that lung metastasis has taken over.  It's exhausting.  The monkeys take up residence and refuse to leave. 

In mid May, during the busiest, most stressful time of my entire year at work, I got a call from my urologist.  The stent that was placed between my bladder and kidney last year, part of a cryoablation procedure to kill a large tumor in my kidney, left lingering symptoms.  My doctor called to tell me that he ran a FISH test and it came back positive.  A FISH test is a marker for cancer.  He wanted me to have an immediate procedure to see what was going on.  The subtext of the call was, "You probably have bladder cancer." 

There were three possibilities:  1.  The FISH test was a false positive and I'm fine.  Yeah, right.  2.  Metastasis has spread to my bladder.  3.  I have a new bladder cancer, caused by the tons of chemotherapy drugs and other toxic medicines I've poisoned my body with over the last 14 years.  It was a very long two weeks and the monkeys were relentless.  The answer was behind Door Number 1:  The test was a false positive.  No sign of cancer.  Relief  and surprise don't come close to describing how happy I was, or the beat down I gave those monkeys.

The problem is, Monkey Mind is a constant state of being unless we actively work to control it and keep it at bay.  I'm having a hard time healing from the carpel tunnel release that was done when I fractured my wrist in February.  This injury was pretty traumatic for my new immune system and it's working overtime to heal me.  Unfortunately, it's also fighting me again, causing all kinds of pain issues to resurface.  Is it any wonder that I self induced a sinus cold last week?  Damn monkeys!

I know that deep breathing exercises and meditation would make a huge difference, so I've started doing both.  I hope to get back to doing gentle yoga again soon, which was something I enjoyed before I fell. Thankfully, I won't have to spend my summer making trips to Hopkins.  There are two more ablations on the horizon.  I'll go in early September for a cryoablation to kill two more tumors in my left lung, and after that we'll schedule another one to kill a right lung tumor.  Next month I'm going to Sonoma Valley in California for a meeting with other ACC patients, and I'll spend a couple of days visiting San Francisco.  Meeting other survivors is enormously helpful when fighting a rare disease that no one has ever heard of.  Having the meeting at a winery is even better!

The first step to conquering Monkey Mind is to recognize the reason the monkeys are screeching.  It's usually fear.  Then we can use the tools we know we should be using -- meditation, prayer, etc. -- to escort them out the door.  Monkeys are fascinating animals.  They just don't belong in our heads. 

Happy Father's Day to all fathers everywhere!


Saturday, April 12, 2014

No, this is not 2011

Did anyone else go back in time this morning?  I was doing a little blog maintenance, and Blogspot re-published a post I wrote in June 2011.  To all of you who subscribe to new posts, I apologize for the confusion.  Knowing all that has happened since June 2011, that is not a time to which I would choose to return, that's for sure!

I'll go back to Hopkins for another RFA to a lung tumor in June, and then I promised myself a vacation.  Hope you are all enjoying better weather.  Happy Holy Holidays, Spring Break and Chocolate Bunnies!


Saturday, March 22, 2014

We Take Care Of Our Own

Word has it another storm is on the way.  Just when you think it's safe to leave your house and go to PT to rehab your busted wrist....  Although I'm bumbling through many of life's required tasks with my left hand, I'm still painfully slow (painful being the operative word).  I had the giant pin removed from the hardware that was recently installed to rebuild my wrist, the hard cast is off, and I've started PT.  My fingers are pretty useless and oh so painful, but I'm determined to work hard to resume a normal two-handed life soon.

Thanks to Mary, I made it up to Boston for the Adenoid Cystic Carcinoma Research Foundation (ACCRF) events.   The trip was exhausting, but I'm so glad I was able to meet other patients, the founders and organizers of the Foundation and the volunteers of their sister organization, ACC Organization International (ACCOI).  We shared stories, broke bread and learned about the latest research in the pipeline for a systemic treatment to stop this monster once and for all.  Sound like an unrealistic reach?  I might think so too.  But with what we know about what causes and drives ACC, and with all the scientists who are now working on research models, there's a lot of hope.

Hope is powerful.  So is having people with whom you can share that hope.  Cancer's a lonely journey; all serious illnesses are.  When it's a rare disease, the isolation can be severe.  Meeting people who speak my language is like gaining an instant family.  Or, as Bruce says,
Wherever this flag’s flown
We take care of our own.
Again, to all of you who donated to the fundraiser, my sincere thanks.


Saturday, March 1, 2014

Continuing Education

After studying something for oh, say a decade or more, a person's knowledge should amount to a couple of letters after their name, even if it's not an education by choice.  For example, Kathy Seeley, MPE, Master of Patient Education.  February turned out to be an unexpected course in MPE.  I'd give myself  B- on the PET/CT at Hopkins, which in my case is an excellent grade.  But I also had a crash course in orthopedics, furthering my continuing education.

Both Dr. Hong and Dr. Hales read my PET/CT images before the report was written and said that I have only one spot, still fairly small, that they think should be treated with RFA in the next few months.  All other spots are either stable or to small to measure, and all 2013 treatments were successful.  As usual, the report reads a little more serious because they have to report every little blip they see.  It wasn't the A that I was hoping for, and I'm not sure my theory of N=1 (my transplanted immune system is fighting both ACC and AML) holds up.  But that was a long shot anyway, and it was a pretty good report card overall.

I was about to blog about these results when, on Wednesday, February 12, the day before our biggest snow and ice storm of the 10+ this winter, I slipped on ice in front of my door and came crashing down on my right wrist.  I laid on the ice, unable to move, for 30 minutes waiting for the EMTs, and this began a week of three ER departments, five ambulance rides, and uncontrolled pain like I've never experienced before, and I'm no stranger to pain.  When three orthopedic surgeons used words like "shattered" and "multiple fractures," the pain episodes made sense.  I had to wait a week for the swelling to go down before a surgeon could insert a titanium plate into my wrist and screw my bones to it.  That was 1.5 weeks ago.  I still have a fair amount of pain, but nothing like before the surgery.  I'm hoping my surgeon will clear me for the short trip to Boston next weekend for the events I wrote about in my last post.  Thankfully, Mary's coming with me so she can drive and help me with daily tasks that we all take for granted when we have two hands.  Without her, I wouldn't be able to manage it.  I know a hard cast is in my future but I don't know much more than that till Monday (barring another traffic stopping snow storm).

I'm lucky that this is all temporary and I will eventually recover.  The people I hope to meet in Boston next weekend don't all have this assurance.  The short term loss of a limb is nothing compared to the loss of one or more facial features, or the ability to eat, speak or smile.  Please visit my  my fundraising page and consider making a donation to the Adenoid Cystic Carcinoma Research Foundation, ACCRF.  If you have already donated, thank you so very much.  People with ACC have earned their MPE at very high costs.  We all really appreciate your support.  For those of you who came to my aid these past few weeks, angels await you.


Saturday, January 25, 2014

High Hopes

Happy New Year, everyone!  I hope that you all started 2014 with laughter, gratitude and health.  I have high hopes for this year and beyond.  Last year was bittersweet.  A year ago last month I learned that so much cancer had emerged, my doctors at Johns Hopkins had a hard time determining which organ to treat first.  After a tough January/February in Baltimore and more radiation in late June, I was pretty sure my luck was running out.  Then, by late summer, the tumors in my lungs were inexplicably stabilizing, shrinking, or falling off the radar all together.

I find it wonderfully helpful that Bruce Springsteen unknowingly follows my ups and downs with the release of his albums.  Wrecking Ball was timed perfectly with the wrecking ball that hit me last winter (see my Feb. 25, 2013 post).  This month Bruce released High Hopes, just as I try to manage my scan-xiety over the next set of scans at Johns Hopkins on February 7th.

My high hopes for 2014 are not just for me, but for all my Adenoid Cystic Carcinoma (ACC) brothers and sisters.  As many of you know, ACC is a slow growing, persistent cancer that can either go to sleep, hide or grow aggressively at any time.  For those of us who have experienced all three, we live life in the present, from one scan to the next.  I'm cautiously optimistic that my unique status as a bone marrow transplant recipient will prove my theory as to why things turned around for me (see my Sept. 14, 2013 post, N=1).  But for other ACC patients, this is not an option.

Since ACC is so rare, it is vastly underfunded.  The fastest, most effective way to stop this unrelenting disease (people commonly fight for decades) is money.  Well, it just so happens that the Adenoid Cystic Carcinoma Research Foundation, ACCRF is holding its annual fundraiser in the Boston area on March 8, 2014.  ACCRF is making incredible strides toward finding a cure.  They are working with the NIH, building scientific research boards and establishing global research agendas.  The event will be one for the record books and I'm really looking forward to it.  Please visit my fundraising page to learn more about the event and make a donation. 

Last year I joined an online discussion site through the Adenoid Cystic Carcinoma Organization International (ACCOI) -- sister organization of ACCRF -- an all volunteer group that sponsors a global community of ACC patients who share information and support.  Before joining this group, I found very few ACCers on my own.  I didn't really know about the experiences of having ACC first appear in the head/neck, where cancer can start in any gland in the face, neck or throat and travel from there.

Some of the people I've met online have gone through, or are currently managing, unthinkable obstacles.  (Since my cancer started in the breast, I was spared a lot.)  I've never seen a group of people hold each other up, push each other forward, and offer advice and experience that cannot be found anywhere in the medical community.  From Malaysia to Switzerland, China, Australia and all over the US, these people are wise beyond words, inspiring and unthinkably brave. Prior to the fundraiser there will be a patient meeting, where everyone can meet each other and learn of the latest research.  After 13 years, I will finally attend a meeting with others who understand the issues I've faced battling a cancer that few doctors have even heard of. 

I'm very hopeful about this year.  We're getting close to finding a cure, I can feel it. The ACCRF is making incredible alliances with researchers all over the world and I'm excited to see what comes of the exploding world of genomics in medicine.  I was not so hopeful this time last year.  I was nervous about living alone, upcoming treatments with unknown side effects, and my failing attempts to train my cat to be my personal assistant.  That last one hasn't changed, but today at least, I'm in a good place.  Signing up for satellite radio with the 24 hour Springsteen channel -- E Street Radio -- was also good for my psyche.

Looking forward to all good things.