A Time To Mourn

February will always be the month of mourning for me.  Many of you know the challenging February I had last year—the deaths of my father and father-in-law, and my diagnosis with AL Amyloidosis (and eventually Smoldering Multiple Myeloma) all in the same month.

There’s the traditional mourning that accompanies the death of a loved one and that was part of my February.  But my diagnosis cut short that mourning and introduced me to mourning the passage of something else.

Before my diagnosis, I considered myself a pretty strong Christian who recognized that God was ultimately in control of my life.  At the end of the Confession of Sin in the Episcopal service we say, “For the sake of your Son Jesus Christ, have mercy on us and forgive us;  that we may delight in your will,
 and walk in your ways, to the glory of your Name.”  I’ve always appreciated that word “delight.”  I don’t ask God to help me “accept” His will but to delight in it.  That’s a pretty high standard but I’d always felt I was doing a pretty good job at it.

I have found that its really easy to delight in God’s will when God’s will is relatively close to my design for my life—happy, healthy, faithful family; financial security; loving friends.  It’s challenging to delight in a diagnosis of AL Amyloidosis with Smoldering Multiple Myeloma and the health problems and likely reduced lifespan that comes with it.

That sense of security, the expected guarantee that my life design will continue, is lost with the diagnosis of a fatal, incurable disease that has a 96% relapse rate.  Yes, I know, that guarantee was never really there in the first place.  But an illusion that persists long enough starts to feel like reality.  And, so, in the midst of mourning the loss of my father and father-in-law, I started mourning the loss of the life I thought I was going to have.

From talking to others with this disease, many of us progress through the five stages of grief after diagnosis—denial, anger, bargaining, depression and acceptance.  I think one of the reasons I’ve done so well with this emotionally is because I was able to move through those stages pretty quickly.  I don’t think you can be “all in” in the fight until you get to acceptance.

One year ago today, my phone call from Dr. Levin as I drove home on I-270 went something like this, “Mrs. Koontz, I have a diagnosis for you.  It’s a rare blood disorder called Primary Amyloidosis.  Your next steps will be to have biopsies of your liver and kidney and an echocardiogram of your heart to see if and how much they’ve been affected by the disease.  I will need to refer you to a specialist but I don’t know who treats it here at OSU.  I have some phone calls and emails out and will call you tomorrow with the name of someone to whom I can refer you.  Have a great night!”  Ok, he didn’t say “Have a great night” but I can’t really remember what he said, if anything, to close the conversation.

After I got off the phone with Dr. Levin, I called Alan.  I remember I was passing the I-270 exit for Tuttle Crossing when I was on the phone with Dr. Levin and was passing the 33 exit for Avery-Muirfield when I was on the phone with Alan.  I got home, jumped on the internet and was shocked at the prognoses I saw.

Yes, everyone says “don’t go on the internet there’s a lot of misleading information out there.”  But I knew how to find the good information….I work in data and analytics and understand statistics; I did Media Relations for a teaching hospital, writing general media news releases and pitching story ideas about clinical trials going on at the hospital; my husband is an RN with a career of experience in the ER and ICU.  I know how to find the valid information….and the valid information was the scary stuff.  There’s not a lot of false information floating around the interwebs about a rare disease.  Not too many sensational news reports exaggerating the seriousness of the diagnosis....no exaggeration needed.

I remember seeing average survival time of 4 years and thinking I wouldn’t even be around to see Claire graduate from college or know any grandchildren that might come along.  As I reeled from the shock, I kicked my meta-analysis into high gear searching for some hope in the medical literature I was reading.  At the time, I wasn’t aware of the progress that has been made against this disease in the last 10 years and was giving equal consideration to information from 1999 that I was to that from 2012.

But as I read more, I saw such variation in the overall survival estimates and decided I was going to be one of the people on the long tail of the survival curve.  I saw on the Amyloidosis Foundation website that high dose chemo with stem cell transplant “is the most aggressive treatment to date for those who can qualify for it. It is showing a great deal of promise.” I decided the phrase “aggressive with a great deal of promise” sounded like what I wanted.

So, at 10 pm, about 5 hours after I first heard the phrase “primary amyloidosis” from Dr. Levin, I posted on my blog (Relaxin in the Amyloid Oasis) that I had seen a calendar for a stem cell transplant and noted, “It says the process takes 5 weeks but can take up to 8 depending on how well the patient tolerates the treatment.  I told Al, "My goal is to be done in 4!"  :)”

I moved through those grief stages pretty quickly that night and got to a point where I was ready to fight once I had a sense that there was a path to success.  Now, I’m not saying I didn’t cycle back through some stages over the coming weeks and at different points in my journey (because I did), but that night and over the next few days, God gave me the strength to want to fight this.  And the very next morning, He gave me the peace to know that I would be OK. ("It Is Well With My Soul")

Over the summer, as I recovered from the stem cell transplant and wondered if it was successful, I still went through periods during which I would mourn the life I had, or I thought I had, before my diagnosis.  But once I learned I had the best response possible to the transplant, I haven’t done the before and after thing.  Words of wisdom from two beloved believers helped me with that.  First, my daughter Amy admonished me to “live the life God has given me.”  And my friend Jim told me that “my after is now a new before.”  I have a life, there is more to come and I need to look to the future thankful for what I now have, not disgruntled about losing what I thought might have been.

Another period of mourning I’m now experiencing is related to work.  In January, we had a new leader named for my group.  He has reorganized the group and my team of three directors and 25 people has been split up into other teams within his organization so I can take on a new role.  While I’m excited about the new role, there is a sense of mourning for a team and a function that I’ve been working to build over the last 3+ years.  I’ve developed some great relationships with folks on the team and, while the relationships will continue, there’s no escaping that they will change.  You take a job for the work, you stay in a job for the relationships and I’ll miss working closely with the team.

But, if this last year has taught me anything, it’s that change will come and even when I can’t see where the path will lead, I can trust in God’s love and care as I walk the path.  Lately, I’ve been thinking about the passage from Ecclesiastes 3 (There is a time for everything, and a season for every activity under the heavens:  a time to be born and a time to die…) and humming "Turn, Turn, Turn", The Byrds song that is based on the passage.  I was pretty familiar with the section of the passage that lists all the activities for which there is a time but I hadn’t read the whole chapter recently.  I was struck by the verse that comes shortly after—“I know that there is nothing better for people than to be happy and to do good while they live.”

Yes, as I move through this period of mourning and past these one year anniversaries, I will hold fast to that…to be happy and do good while I live.

The Real Slim Shady & Multiple Myeloma

May I have your attention please?

May I have your attention please?

Will the real Slim Shady please stand up?

I repeat, will the real Slim Shady please stand up?

We're gonna have a problem here..

The request at the gala on Saturday night seemed simple enough....."Will everyone with Multiple Myeloma please stand up?" Hmmmm, I wonder if I should stand up, I pondered, as the words from Eminmen's "The Real Slim Shady" crept into my head.  According to my OSU medical record, I have Primary Amyloidosis diagnosed 3/11/2013, I have Multiple Myeloma diagnosed 3/11/2013 and I have Smoldering Multiple Myeloma diagnosed 5/11/2013.

According to Dr. Gertz at the Mayo Clinic, I "do not meet their criteria for Smoldering Multiple Myeloma."  Notice he didn't say that I don't have it.  I've watched several webcasts and videos from The International Myeloma Foundation in which they will have physicians with different perspectives review a set of diagnostic information and discuss what treatment is warranted.  I call these the myeloma battle of the bands.  Mayo is always on the conservative end of the spectrum--don't treat, cost doesn't warrant the outcome improvement, etc.  (Meanwhile, Antonio Palumbo, MD in Italy is almost always advocating to treat.  Those impulsive Italians!)  

So, when Dr. Gertz says I don't meet their criteria, I take it with a grain of salt, knowing that Mayo is very conservative.  It seems there's not a lot of clear cut, agreed upon criteria that separates Primary Amyloidosis (AL), Smoldering Multiple Myeloma (SMM) and Multiple Myeloma (MM).  At the point I started to get fixated on labeling what I have, Dr. Efebera explained that the name doesn't really matter.  She will look at all the clinical information available to her and develop the most effective treatment plan for me, not based on the combination of letters for my disease.

I trust her expertise and judgement and, in theory, her approach sounds great.  The problem with it is the difference in prognosis for someone with the different combinations of the alphabet soup--AL, AL with SMM, AL with MM.  She told me I'm "in a gray area" between AL and AL with SMM.  

Just this week I saw a study from Mayo that said AL patients with greater than 10% bone marrow plasma cells really have AL with MM.  Well, what do you know, my aspirate sample (the liquidy part of the marrow) was 7% but the core sample (from the solid piece of bone marrow) was smack dab on 10%.  And, according to Dr. Efebera, the core sample is the more accurate measurement.  Did the pathologist round up or round down?

I recently read an article in the New York Times entitled "How Long Have I Got Left?"  It chronicles the quest to get a definitive life expectancy figure by a Neurosurgical resident recently diagnosed with lung cancer.

These statements really captured many of my feelings as I've researched my disease and prognosis--

Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.

But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer. 

What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

The writer describes his quest for a life expectancy number.  But before I can even get to a number, I need a name and there's not a lot of consensus in the medical community about the name of my disease, my unique combination of letters.

I know that one of the spiritual lessons from this journey has been trust.  God brings that message of trust before me on a regular occurrence...bordering on annoying almost (sorry, God, but I call it like I see it.)  This mystery about the name of what I have, much less the amount of time that diagnosis is expected to afford me, is just another opportunity to trust God.

I'm doing pretty good about not worrying about my combination of letters.  I will continue to read and study because I am intellectually curious about this.  I'll keep working to regain my strength and stamina so I can feel that I've left the effects of the disease in the past.  My recent trip to Colorado with my sister in law and her sisters (my adopted sisters) was a big step.  I went backcountry skiing for at least 2 hours each morning and kept up just fine.  I went downhill skiing at Steamboat Springs for one day and successfully made it down my favorite black diamond run "Huevos".  You can see the photographic evidence in my Google photo album.  That's really good progress less than 9 months after my stem cell transplant.  Crossing the finish line on my 100-mile Pelotonia ride will be the ultimate expression that I've moved past the impact the disease and treatment have had on me.

I'll continue to live my life one day at a time trusting that, as it was before my diagnosis, my time on earth is in God's hands.  But I do need someone to tell me whether or not I should stand up.