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.

Forms of Pain and Hope

Here we are, ten years after the 9/11 attacks on the World Trade Center, on our country.  For the past week, two themes emerge in the news coverage every time we look up: pain and hope.  Embedded in these emotions are resilience, survivorship and faith in better times ahead.  These concepts hit pretty close to home for me as I watch the coverage of the 10 year anniversary while recovering from a more extensive lung surgery than I had anticipated.

Because my lungs and medical history are so complicated, my surgeon proposed a lung resection (cutting out the entire mass), rather than an open lung biopsy, as I mentioned in my last post.  This would allow the pathologists to rule out leukemia, the first cancer (ACCB), the CMV virus I had twice, Graft vs. Host Disease which I finally fought off after 4 rounds, and figure out which of the several dozen possible infections had taken over my right lung.

I am so glad to have been scheduled for Friday, September 2nd, rather than Tuesday, September 6th.  I was released from Hackensack University Medical Center that Tuesday, and now I'm that much further from the long days of my Labor Day weekend.  If there is one constant in the universe, it's that nothing is ever simple with me.  Because my 7 a.m. surgery was delayed till about 4 p.m., Mary was able to make it from Pittsburgh in time to tell me, as I woke up in recovery, that all went well and my surgeon was very happy.  After removing the entire mass, which was the size of an orange (!), he reported that no cancer was found and it was definitely an infection.  We were all pretty sure that this wasn't cancer, but still, no cancer!  The events that followed only make for a good story, in light of the big picture.  But a story is still a story. 

I was doing so well after the surgery, I was sent to a room rather than the ICU.  The next morning when the nurse helped me into a chair, things went south.  Now, some of you know that I have fairly low blood pressure, and I faint easily.  I warned the nurse that I was getting dizzy and nauseous and down I went.  I fainted twice, and at some point, my heart stopped for 3 seconds.  I woke up to 10+ people working on me, and a high speed dash to the ICU, during which, as warned, I tossed my cookies. I felt as though I was living a scene from Grey's Anatomy.  After receiving all kinds of treatments, tests and machinery hook ups, the "episode" as it came to be called, was topped off with having the giant sticky pads slapped onto my chest "just in case they needed to use the paddles."  Of course I was fine within an hour or two, but I had sealed my fate.  I was confined to a small ICU room for the next three days, unable to get out of bed without a massive production of machinery management.

In the meantime, I struggled to deal with pain of the surgery and the chest tube that was sewn into my side for three days.  These problems were somehow worse than the left lung resection I had in 2006 to remove three of the ten masses that were found to have metastasized from the first cancer, ACCB.  (Ah, you forgot that this is all a repeat performance, didn't you?)  In 2006 I was a lot stronger, had a normal immune system and weighed at least 20 pounds more that I do now.  I suppose that explains it. 

The other issue was the puzzle to diagnose this infection.  Ruling bad things out provides tremendous relief, but there are so many possibilities as to what the mass actually contained, I now have to wait for more tests to come back and cultures to grow.  While in the hospital, precautions were taken, on the very small chance I may have something infectious, and as Betty noted, "this is turning into an episode of House."  Best case scenario:  I have something that requires no more treatment, and the surgery removed the problem completely.  Worst case scenario:  I have something that may require a bunch of medications for 6 months - 2 years before this is finally over.  In any case, treatment is not urgent, especially since the mass was first detected in May, so I'm just concentrating on healing from the surgery.  (Honestly, I have little choice in that regard.)

As I tend to the wounds from my latest battle, I am humbled by the courage and strength of those still struggling with the pain of 9/11.  Pain and hope come in many forms and we are all warriors at one time or another.  My heart goes out to all those whose lives were destroyed by the attacks 10 years ago -- those who survived, those who lost loved ones, and those first responders now dying of cancer who have become invisible to politicians refusing to protect their medical needs, insulting their sacrifice and their faith in a system they served with loyalty and dedication.

Perhaps we can take this weekend's lessons to celebrate the good that comes from tragedy (as it always does) and pledge to right the injustices that still linger.  Pain and hope.  There's no escaping them.  Thankfully, we have control over how we respond to them.  I marvel at the human spirit that binds us as a people to protect each other in times of crisis.  Here's to that spirit. 

Kathy

P.S.  Don't forget to sign up or donate to the Lowenstein Lights the Night team or my personal homepage.  Thank you for all who have done so already!

CANcer + HEALth = CAN HEAL

Stormy News

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

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

Somewhere in the middle of this, I had a CT scan of my chest to follow up with that pesky infection that I warned not to get too comfortable.  I was, shall we say dismayed, to learn that it has grown bigger.  Much bigger.  Time for a lung biopsy.  I hate those.  The only thing that rivals having your bones drilled into is having your vital organs pierced.  Now we get to last week:

• Monday:  My eye doctor assured me that there is nothing wrong with my eyes.  Good news!  I was convinced that I was getting cataracts (a risk from the chemo and radiation) or shingles.  (Yes, in the eyes.  A woman in one of my support groups had this happen to her). 
  

• Tuesday:  Lung biopsy, local sedation only.  I was told that cultures would be grown, which could take a week or two, but that preliminary findings should be in by Friday, the day of my next clinic appointment.  On the way home, my doctor's office called recommending a brain MRI the next day for the headaches.

• Wednesday:  Brain MRI and my 4th IV in less than 2 weeks (very stressful, since my veins are also like cooked spaghetti.  What is that really skinny kind of noodle?  Vermicelli?)

• Thursday:  Perfect dental check up.  Good news!

• Friday:  The Day of Answers; clinic with my transplant doctors.  The brain MRI was negative.  Good news!  The next step is a consult with a neurologist to figure out why the headaches got really bad with these eye hemorrhages (scheduled for Tuesday morning).  My theory is that after being on steroids for 8 months, my eyes are dry, causing the bleeds and headaches.  All are side effects of tapering.  I'm now self-medicating with Tylenol and eye drops.  I think all will be fine here.  The lung biopsy?  Inconclusive.  It only showed inflammation so far.  Assuming the cultures are also not definitive, my doctor wants me to have an "open lung biopsy" for further evaluation and subsequent treatment.  She said that it would be done surgically with scopes to "scoop out the infection."  Not good news.  Hence the consult with a thoracic surgeon scheduled for Tuesday afternoon.  This also means that I'll have to have another PICC line.  Ugh.

I'm not happy about this situation, but every time I tell someone, I burst out laughing.  It just seems so ludicrous that I would now need lung surgery.  I'm going to lobby to have it done asap.  My cough is getting worse, I'm now getting winded, and I don't want my new immune system to be so taxed that I flare with GVHD, requiring me to go back on steroids.  The sooner the better, even if I'm stuck in the hospital over a holiday weekend.  (Weekend TV is so awful!)  I'm going to tell the surgeon that I have to recover by September 13th so that I can go to the taping of the Daily Show with Jon Stewart in New York with Michael, Steve and Francine.  What could be a bigger motivator?
 
There actually is more good news to report, so let's end this on a better note.  My appetite is slowly getting better.  The tremors keep me from gaining real weight, but I'm tapering off that medication now, so next month I should be able to sign my name again and gain a few pounds.  My stomach is still not a happy camper, and I'm a long way from a cup of coffee, but I've expanded my boring diet.

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

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

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

Kathy
CANcer + HEALth = CAN HEAL

Is it really mid August already?

Many of you may remember the days when you would get an e-mail from me asking for a donation for the American Cancer Society's annual Relay for Life event.  I haven't participated in that for a few years now because, well, I've been busy with other cancer related concerns.  My transplant buddy, Linda, who passed away last month from her second relapse of AML (see my last two posts), told me about the Leukemia and Lymphoma Society's annual Light the Night walk, and we planned to participate together. I promised Linda and her family that I would not only beat this disease, but that I would make as much noise as possible to educate people about AML, the need for donors, the importance of research and the need for financial support.

My law firm, Lowenstein Sandler PC, has been sponsoring quarterly events for the past couple of years under a pro bono program called Lowenstein Cares.  So I thought to myself, "Self, wouldn't it be cool if Lowenstein sponsored a team for the Light the Night walk?"  I was planning to participate in Light the Night somehow, but I wasn't sure how the firm would respond to my idea.  The firm, including several individuals, many of whom I hardly know, has been beyond supportive of me, especially over these last two years.  So I shouldn't have been surprised at the speed with which the Pro Bono Program endorsed the suggestion.

We now have an official team, "Lowenstein Lights the Night" for the New Jersey and New York offices, and we even have a team for our California office, "Lowenstein Lights the Night - Palo Alto."  The New Jersey walk will be on Saturday, October 15th beginning at 5 p.m. at Headquarters Plaza in Morristown, and the California walk will be on the same day at Palo Alto High School in Palo Alto.  There are a couple of ways to participate: 

1.  Walk with us.  If you click on the red "Join" button on the bottom of either of the team pages, you will be guided to a page explaining  how to join the team.  Once you join a team, you will then be able to set up your own personal webpage, where you can set your own goal, send out donation requests and invitations to the walk, utilize templates, establish an address book and  make use of other helpful tools.  You don't have to work at Lowenstein to be part of our teams, and I highly encourage my personal local friends to join us in Morristown.  

2.  If you can't join either team as a walker, you can make a donation on one of the team webpages or on my personal webpage.  For general information about the Light the Night walk, click here.

Although the walk is only two months away, I'm optimistic that I'll make it around the two mile course by that time.  My symptoms haven't changed much since my last update -- stomach pain, lack of appetite, tremors and I'm still underweight.  I've had a few bad weeks lately, but I hope to see some improvement soon, since I was finally taken off steroids last week for the first time in eight months.  The problem with cutting down on steroids (as I've done four times now), is that the lower the dose, the more I feel like I've been hit by a bus.  They're evil that way.  But they treat flare ups of Graft vs. Host Disease, which is very serious.  GVHD is also evil, but it's a sign that remission is holding and the transplant is working.  Everything has its pros and cons in Transplant World.  The trick is to focus on the big picture, and in my case, it's very positive.  My next step is to slowly cut down on the other immunosupressant, Prograf (Tacrolimus), which is a pretty intense anti-rejection drug.  Once I'm off Prograf, I should feel stronger, eat better, and hopefully go back to work!

In the meantime, I struggle with a warped sense of time.  On the one hand, it seems like time is standing still.  My recovery is taking so much longer than I ever imagined. Every month I think I'll turn a corner and start to feel like my old self again.  But then I remember everything that I've put my body through, and I realize how resilient the human body can be.  On the other hand, I look at the calendar and can't believe that the summer's almost over.  The seasons come and go, no matter what.  And as my birthday approaches in a couple of weeks,  I remember all that I've survived this last year and where I was last August for my birthday.  Three long time friends took me out to dinner in Phoenix when I was there to move my father into an assisted living campus.  I then came home to another bone marrow biopsy.  While waiting for the results, the litigation paralegals threw me a surprise 50th birthday party at work.  By the end of the week I learned that I had relapsed and was headed for more consults, more treatment and a stem cell transplant, only to then enter the abyss of recovery.

So here I am -- a year later, happy to be here, grateful for all the love and support I've received from so many. I'll never dismiss birthdays as meaningless again.  What better way to mark the milestone than to help raise money for a cause that's so close to home?  The October walk will be here before we know it, and right behind it my 1st transplant birthday on November 17th.  What a great second chance to be young again!

Kathy
CANcer + HEALth = CAN HEAL