Damocles

Tonight, I was doing a little internet browsing on Amyloidosis remission and I saw a link to a clinical trial at Ohio State that is gathering information on amyloidosis treatment and patient outcomes.  This statement in the "Purpose" section of the description of the trial was a bit of harsh reality tonight...

"Because nearly all myeloma and amyloid patients relapse and treatment is eventually unsuccessful"

As I said in my last post, it almost always comes back (I think I saw one stat that said 4% of cases don't eventually relapse) its just a question of when.  If I can't be in that 4%, I want the when to be very far off in the distant future.

It reminds me of the Greek legend about the Sword of Damocles.  The king, Dionysius, let Damocles switch places with him so Damocles could feel the king's fortune and power.   But, Dionysius arranged that a huge sword hang over the throne suspended only by a single hair from a horse's tail.  As Cicero asks when referring to this story, "Does not Dionysius seem to have made it sufficiently clear that there can be nothing happy for the person over whom some fear always looms?"

Its only through God's grace and my trust in Him, feeble it may be at times, that I can find happiness even though this looms over me.

n=1

I had a great appointment with my favorite physician, Dr. Doug Levin.  He is the Gastroenterologist/Liver Specialist who originally diagnosed the Amyloidosis.  He was also key in resolving the fluid retention problem I had in the hospital.  Whenever the other specialists seem to be tripping over themselves or aren't in agreement with a course of action, I call on Dr. Levin to sort things out and set an effective course of action.

This was just a routine follow-up but I wanted to talk to him about the lower abdominal bloating and the fact that the urine in my protein has been increasing.  The increased protein is scary because that could indicate that the amyloids are back and are causing my kidneys to leak protein.  This has been on my mind since the kidney doctor mentioned an increase in protein on Thursday and ordered tests for Monday that will determine if the amyloids are back.  Yes, the transplant worked but what I've learned with this disease is that it comes back, even after transplant.  The key is how long it stays away.  I sure was hoping for more than 3 months.

Of course, Dr. Levin shined a ray of hope.  He said the increase in the protein was "unremarkable" and its normal for it to vary.  He said I still wasn't anywhere near where I was before.  Mondays tests will confirm its just normal variation.

We talked about the size and firmness of my liver.  I told him its like living with a concrete block in my abdomen.  My liver is so much larger than normal and hardened that its rearranged the organs in my abdominal cavity.  When I asked about my lower abdominal bloating he said, "Your intestines are shoved into your right hip pocket."  So out is the only way for them to go when I eat.

I asked him if there was any cases where the liver returned to normal size and firmness as the amyloids cleared out and the liver had a chance to heal.  He told me that there isn't enough history with amyloid patients living that long to really have any studies that show that.  He said he's treated several amyloid patients during his career "but right now its n=1 and you're the one."

So, I have an upper endoscopy on Monday to see if there is a yeast infection in my stomach and intestines.  Dr. Levin will also biopsy my stomach to see if the amyloids have cleared out.  I'll get the results by Wednesday that will tell me whether or not my blood is producing amyloids.

I was a little freaked out by the prospect of the amyloids returning but, after about a day, was able to find my trust in God and that's what I'm holding on to right now.  Early on, God told me He's got this and He has smoothed every bump on the road so far.  I know He's got this one.

Good Reminder....

Ready for Easy

Last week I was really optimistic that I had turned a huge corner by getting a handle on my abdominal bloating from the anti-fungal medication the doctor had prescribed for me.  It seemed that yeast had infiltrated my GI tract and that was causing the bloating.  The medication they put me on can cause liver damage but my liver function was good after 1 week on the medicine.  I finished the medicine on Saturday and the bloating and yeast came back on Monday.  Soooo frustrated.

My oncologist is going to put me on a higher dose of the anti-fungal medicine, wants me to have a weekly liver function test and an upper endoscopy.  More risk to my liver, more blood test and yet another procedure that will involve an IV.  After all the sticking and needles in the hospital, I was hoping to go a little longer before getting stuck again.

While I'm happy with my overall prognosis and progress, these ongoing issues are starting to wear me down.  Alan told me tonight that I've won the major battle and I just need to get through these skirmishes.  I've always been a fighter but its now going on 6 months with my abdomen being painful/uncomfortable and eating is a chore.

I will keep moving forward and fighting whatever I need to fight but I'm ready for easy.

Living Boldly

We're in New Jersey this weekend for one of my daughter's lacrosse tournaments.  We headed out to the fields for the tournament this afternoon and almost as soon as we got there, it started raining and, within 15 minutes, they had canceled the remaining games for today.  

The tournament is being held at a sod farm east of the Philadelphia suburbs in New Jersey.  There was one way in and one way out on a 2-lane road.  And one way in and one way out of the parking lot.  The tournament is pretty big...20 fields and more than 100 teams with about 12 girls per team...and a large percentage of the members of those 100 teams were all trying to leave this little farm at the same time.

Needless to say, the traffic turned into a cluster with folks making new exits, driving around others waiting in line, some folks letting others in and some folks not.  As we sat in traffic after finally making it onto the road, I told Alan, "I should have gotten out and started directing traffic.  Almost everyone will respect the directions of 'The Cancer Lady'."  (Now, I don't really have cancer but when people see my bald head and thin frame, that's the assumption most would make.)  We played out what would happen if I jumped out of the car, pulled off my hat and started directing traffic.  It was fun scenario to consider.

I talk a lot about "playing the cancer card" like when I boldly walk in front of a car driving through a parking lot ("they wouldn't hit the cancer lady").   I think during this recovery period where its quite obvious that I'm recovering from some sort of treatment, that I should use the opportunity to step in and help when I otherwise may have been reluctant.  I have a bit of a "Get out of jail free" card when it comes to someone being offended by my actions.

I don't want to use it as a weapon.  I could imagine that folks facing incurable diseases might use it as an excuse to say offensive and hurtful things or look to get preferential treatment.  That's not what I have in mind.  What I am pondering is trying to show love and, perhaps, gently bring perspective on just how blessed each of us really is.  I don't want to be Debbie Downer as in "your problems aren't real because you're not facing what I am" but I want to try to be a more obvious example of God's love and grace.

Today, as I was leaving a convenience store I said to the clerk, "Have a good day."  He replied, with a real hint of sincerity in his voice, "You try to make it a good day, too" to which I said with a wink, "EVERY day is a good day."  It was a start.

Patience & Real Problems

I've been working hard the last 2 weeks to monitor my caloric intake so I will gain weight.  I used an application called My Fitness Pal to record what I ate and track my calories to be sure I was eating enough.  For the 2 weeks, I ate 3,000 calories per day...but didn't gain any weight.  Which, of course, frustrated me.  The quest for all the calories also stressed me out and consumed way too much of my consciousness.

Sunday as I was leaving church, the assistant rector at my church, Cricket, asked me how I was doing.  I told her about my caloric quest and frustration with my inability to gain weight.  I said, "I know I'm getting better every day, I just want it to hurry up."  She said, "Maybe that's something God wants you to work on."

Of course, I knew she was right and have had those thoughts myself.  When I do what I think is necessary to achieve an outcome, I want to see the results.  And I think my frustration over the lack of progress is partly because I feel the results are the result of my work and not God's grace.  This is a struggle I have continuously.

My plan now is to do the work and leave the results to God.  Whether it's with the weight gain, my prognosis or whatever else I have to deal with on this journey.

The other theme for the day today was "real problems."  I returned to work today, just for the morning, and everything went well.  It was great to see my colleagues and my boss and start integrating back into my career.  While I was on leave, there were several organizational changes that impacted my boss and our group.  Nothing major but change in corporate America is stressful.

As I was leaving work, I chatted with a colleague from another group who is undergoing organizational changes.  He told me that when he would get stressed about the changes, he would think about me and realize that what he was facing wasn't a "real problem."

Also today, I saw a post on Facebook by a friend who is in Paris to spend time with her daughter, do some sightseeing and watch some of the Tour de France stages.  She posted on Facebook that she was frustrated she couldn't operate the combination washer/dryer in her apartment in Paris.  Her daughter reminded her this was a good problem to have and I noted that I would certainly take that problem.  She admitted that she was fortunate that was her problem.

So the lesson today is patience and real problems.  I need to have patience that God will ensure my recovery progresses on His schedule as long as I'm diligently working.  And I need to maintain perspective on what is a real problem.  My prognosis is still good and my recovery is on track.  Bloated stomach, not a real problem.  Discomfort from my enlarged liver, not a real problem.  Not gaining weight as fast as I'd like, not a real problem.

As my friend's daughter reminded her, in the grand scheme of things, I have good problems right now.  I just need to be more patient.

Before and After Part 2

(Reader's warning:  There will probably be more Before and After posts than there were Star Wars movies.  Hopefully, these come out in an order that makes a little more sense than the Star Wars saga.)

I was preparing an email for my friend Rupert and wanted to share some of the photos from Amy's wedding.  Rupert is a dear friend who lives in London.  His family stayed with us for their winter break one year when we lived in Florida.  Amy and I spent a weekend with Rupert on our way back from Spain in 2006.  Amy and her 2 friends who backpacked through Europe also stayed with Rupert on their way home.  In 2008 (?) Rupert, his lovely wife Tracey and beautiful toddler Henry made the trek to Ohio for a visit and we had a wonderful time.

Rupert and Tracey had planned to come to Amy's wedding but were unable due to health issues with Tracey's father.  We had talked some before the wedding but Rupert didn't know about my health problems so I called him a few weeks ago to catch up.

As I was going through the wedding photos, I came across this one and it made my cry.

Yes, some of it was from the change in my physical appearance but some of it was wanting to be that person who wasn't battling a life threatening illness.  As I looked through the photos, it reminded me of what a wonderful "before" time was Amy's wedding....before the diagnosis, before the transplant, before the decline in my strength, before I was a burden to my family.  So many befores.

I have a picture that comes into my head to motivate me for the after.  Its also from Amy's wedding.  It's this one.

I love those girls so much and want to make sure I can be a strong presence in their lives for many years to come.  Of course, Al is important, too, but I want to make sure that I can help my girls grow into the awesome women they have the potential to become.  And that's a lifelong process.  When I get frustrated about superficial things like the abdominal bloating or my lack of hair, I think about how fortunate I am to have the potential to be around another 20 years.  Even recently with this disease, a 20 year life expectancy was pretty much unheard of.  Now, with the transplants and other treatments, patients are achieving that.  And, as time goes by and new treatments are found, I'm hopeful that 20 year number will get even bigger.

We will be going to a wedding in the end of August.  John, who is the son of one of my best friends, Allyn, will be marrying Jackie in Santa Monica.  I'm looking at that as another milestone on my after journey.  Its another step toward normalcy and I hope I am in much better condition by then.  I probably will still require a head wrap but maybe the bloating will be down and I can wear a somewhat stylish dress.

So, onto my after, whatever it looks like.

Refuse to be overcome

From one of my morning devotionals.  I hold onto this...

"Dear child of God, you may be suffering, but you cannot fail if you will only dare to believe, stand firm, and refuse to be overcome."