My Dad

I've been thinking about my dad a lot today since today would have been his 88th birthday.  Since his death was so close to my diagnosis and the whirlwind of emotions and activity that set off, I sometimes feel that I never really went through a grieving process for him.

The events of last February were just so bad.  Let's recap--

February 1--my father-in-law passed away
February 7--my father-in-law's funeral
February 14--my first appointment with Dr. Levin
February 18--my father passed away
February 23--my father's funeral
February 25--Dr. Levin calls me with the diagnosis of Amyloidosis
February 28--my first appointment with Dr. Efebera

Wow, I've never spelled it out like that before.  That's a lot of tragedy jam-packed into the shortest month of the year.

I came back from my dad's funeral on a Sunday and Monday after work is when Dr. Levin called me with my diagnosis.  He called me while I was driving home from work (I was just approaching the 33 exit on I-270) and he said something like, "I wanted to let you know that I have a diagnosis.  It's a condition called Primary Amyloidosis.  Its very rare and I'm not really sure to whom I should refer you.  I have some calls and emails out.  I'll call you tomorrow and let you know what I find out."

I called Alan and when I got home, we were both on our laptops, furiously searching the internet for information.  Bad move!  The Google searches for Primary Amyloidosis gave the impression that there was no hope and I was looking at surviving about 4 years or so.  It really distracted my attention from my dad's death and firmly focused it on what I believed to be my own impending death.

So today I've been thinking about the many lessons my dad taught me and the great memories I have of him.  And I'm thankful for a future that is very different from the one I thought I was facing last February.

Happy Half Birthday to Me!

Tomorrow I turn 6 months old.  Yes, there are times I may act like an infant but this birthday is due to my stem cell transplant.  People who have undergone the transplant often celebrate the date of the transplant as a birthday--hey, maybe I didn't travel down a birth canal but getting a whole new blood system is a pretty big deal.

I've spent the week with all of the gists in my life--nephrologist, gastroenterologist, hematology oncologist--and got good news across the board.  I won the gist trifecta!  The best news is that I've achieved a complete hematologic response to the stem cell transplant.  The response is categorized into complete, partial and none and is based on whether the M protein is found in urine and the ratio of immunoglobulin free light-chain.  Side note:  I have done a lot of reading about this disease and still don't understand enough about the cellular biology to explain what that means...I only know it matters.

The reason I know this matters is because of this chart from a 2007 study at the Mayo Clinic...

We analyzed 282 consecutive stem cell transplant patients. A partial hematologic response was achieved in 108 patients (38%), and 93 (33%) achieved a complete hematologic response. Survival rates of patients with complete, partial, or no response were significantly different, even after eliminating bias from early death. The degree of response was affected by the intensity of chemotherapy conditioning, septal thickness, and cardiac biomarkers. Hematologic response translates to longer survival.

 Dr. Efebera also said that my liver may reduce by 1/3rd over time to that will help with some of my bloating and pain.  A med school student was shadowing her during the appointment and she was showing him some of my CT scans and how large my liver was.  Normal liver span is about 13 cm and mine measured 24 cm in December and I'm sure its gotten bigger since then.  He asked if he could feel my liver and I said, "Go ahead.  I'm a little bit of a medical freak show where my liver is concerned."  I told him I have this mental image of a liver shaped Godzilla wreaking havoc throughout my abdomen metaphorically pulling down phone wires and smashing buses with screaming people inside.

I had an IV infusion of Zometa after my appointment with Dr. Efebera.  It only took 15 minutes for the infusion but toward the end, I developed pretty severe chest pain, throat tightening and pain in my ears.  These are all known side effects of the medication.  My nurse paged the nurse practitioner, Tammy, who is one of my medical buddies.  We joke around a bit in our emails to one another and she's a lot of fun.  She walked into the room and said, "What are you doing to me?"  I replied, "The real question is what are you doing to me?"  She said I had a good point there.

So, after some IV benadryl followed by some IV steroids, I was back to normal and went to work.

My appointment with my nephrologist, Dr. Samir Parikh was pretty uneventful.  We talked about reducing my diuretics over time to lessen the load on my kidneys.  After all the fluid issues before and during my hospitalization, I'm very reluctant to change those, almost irrationally so.  The good thing about Dr. Parikh is that he listens to my concerns and will change his recommended course of action.

He talked about how well my recovery has gone and how hard I've worked to regain my strength.  He told me I should go out to patient groups and give talks on how to recover effectively from serious disease.  Maybe I won't do that, but I think I might have a book inside me that might cover that.  I just need to get with some of my friends who are published authors--Fr. Stephen, Bonnie and Jim (soon to be published I'm sure)--to figure out how to get that book out of my heart and head and into the computer.

My appointment with my gastroenterologist went well also.  As I've said before, Dr. Levin is my main man, the top gist, since he diagnosed me and was the one to get all the gists on the same page when I had so many fluid issues in the hospital and they were looking a little like Keystone Cops.

No new good news, but no bad news either.  He thinks my abdominal bloating is due to damage from the disease and chemo and may improve over time as the amyloids clear out of my GI tract.  He is still concerned about the size and firmness of my liver.  There's one part of my liver that is really prominent (medical term for really sticks out) just below my rib cage on the left side.  Every time he plapates that area, he gets this really squinty look on his face I interpret as "this just isn't right."  My liver function tests are all still really good and the ultrasound from June showed the blood flow is good through the liver. Obstructed blood flow is one of the early indications of a damaged liver.

I've had some variation in some of the key measures in the liver function test.  Over the last 2 months, 2 key components had been creeping up steadily--46, 51, 53, 58,  64 and then back down to 43 this week.  I asked Dr. Levin about it and he characterized it as insignificant variation.  I think I need to get all my old hepatic function tests and start building some control charts for my liver function.  Time to go 3-sigma on my liver so I can see when the process starts to get out of control.  Problem is, I'd need to hire someone to do the data entry from the 250 pages of lab results I have on paper from my hospitalization.  

Dr. Levin did order an MRE of my liver.  No, that's not a typo for an MRI, it's a test called a Magentic Resonance Elastography.  It's a non-invasive way to detect hardening of the liver.  Its still a non-standard test at OSU so he has to get with the Radiologist and Physicist to get my appointment scheduled.

Dr. Efebera didn't seem to think there was much point in doing the test because there's no change in treatment depending on the results.  I hear Dr. Tom Bishop, statistics professor not medical doctor, talking about the Axiom of Action "in research, theory is developed, experiments are conducted, and data are collected and analyzed to generate knowledge to form a rational basis for action."  He's breaking one of Dr. Bishop's basic rules---if you're not going to change something in response to the data, there is no value in collecting it.  This test could go a long way in putting my mind at ease or causing me to freak out.

The reason it might freak me out is because if it shows my liver is hardened, its another indication of damage but there's nothing we can do about it.  I think one of the reasons my recovery has gone so well is because I have more than optimism, I have HOPE.  The difference, according to a Dr. Shane Lopez, the world's leading expert on hope according to Gallup Corporation (his employer), is that optimism is thinking “that the future will be better than the present,” while hope is thinking “that the future will be better and that you have a role in making it so.”

But, if I go back to my faith, our hope is in Christ Jesus.  So even if it shows hardening, I will have a role in making the future better than the present.  In this case, it will be through prayer which, time after time, God keeps pointing me back to prayer as the only action needed from me.

Weekend before last, Claire and I were in San Diego for some lacrosse stuff.  It brought back memories of my last trip to San Diego.  It was February of last year for a meeting of the Teradata Partners Steering Committee.  Its a group of folks who plan the conference for the database platform and applications most often used by the top companies around the world.

During that trip I became firmly convinced that there was most definitely something wrong with me. My stomach hurt so bad that I had to miss one full day of meetings because I couldn't leave my room and couldn't find anything to eat that I could tolerate.  The trip to San Diego last year was miserable but the trip this year was so enjoyable. It was very normal (understanding that normal for me means a high degree of fun is involved.)  I got to stay with my dear friends Danielle and Greg, get to know their children Anna and Ryan, watch Claire play lacrosse, hang out with Claire at the La Jolla glider port, go to the beach and I even had a margarita.  What's not to like?

I've been thinking a lot about the days before and after my diagnosis.  I'm a big fan of consciously taking a retrospective view from time to time to really look at the progress that's been made.  I've come so far physically, spiritually and emotionally from that time last February and March.  The days following the diagnosis I was like a boxer who had just received a flurry of heavy punches from an opponent--stumbling around the ring with no idea as to which corner I should head.

But I got my feet back under me and my mind cleared so I could continue the fight.  Some people think I have an incredible amount of strength to undergo all the tests and treatments I have.  Its nothing more than keeping my eyes on the prize--a day when I'm in remission and the effects from the disease are insignificant.  I think about Peter stepping out of the boat.  He was fine when he kept his eyes on Jesus and was able to overcome the dangerous physical forces all around him.  Once he took his eyes off the prize, he was overwhelmed by his situation and sank.  Its in my best interest to keep looking to the future--where my hope is in Christ Jesus.

Every test, every treatment puts me one step closer to that day.  I think of my friend Robyn who died a few weeks ago from pancreatic cancer.  I have the opportunity to fight, she doesn't.  So if my life involves lots of medical activity...well, it means I'm still alive.  They don't give IVs to dead people.

So, tonight, as I prepare to turn 6 months old, I am filled with thanks--for a loving God, for all the my friends and family who have been so diligent in prayer and positive vibes, for my medical team, for so so many things.  I'm alive, I'm getting back to normal and I've got a great prognosis.  Oh, how I've grown these 6 months!

Shan yao, bamboo leaves and watermelon rind

I went to my acupuncturist this week to see if she might be able to help with my abdominal bloating.  Its gotten to the point that pants that fit at the beginning of the day feel like a vice as the day goes on.  I started to go to acupuncture when I broke my arm a few years ago and ended up with frozen shoulder.  Acupuncture was a miracle cure, fixing what traditional physical therapy could not.

I go to the Acupuncture Healing Clinic.  Dr. Zhang was trained in China, has US acupuncture credentials and is a clinical assistant professor in the Integrative Medicine practice at Ohio State.  She knows her stuff and is a no-nonsense person.

I had seen her a few times last winter to help deal with some of the symptoms from the amyloidosis but hadn't seen her since I got out of the hospital.  She asked me about the transplant and the prognosis.  After I finished telling her about it, she said (in her very strong Chinese accent) "You'll do fine, you're a very strong lady."  Yeah, I get that a lot, I thought to myself.

She said she thought a few acupuncture treatments could help with healing my GI tract and helping me not retain water.  She went about placing the needles in my abdomen, thigh, calf, head and ear.  The head and ear ones are for relaxation.

After I was done, she gave me a list of foods I need to add to my diet: shan yao (Japanese potato), bamboo leaves and watermelon rind.  She said all of these would help soothe my GI tract and help with fluid balance.  So, Alan was off that day and out running errands so he went to the local Asian market to get the potato and bamboo leaves.

I haven't eaten the potato yet.  I found a recipe for shan yao and lemongrass soup.  It sounded pretty good and looked simple.  I've made a tea out of the bamboo leaves and its OK.  Kind of like grass-flavored water.  Tonight I'll cut up the watermelon, use the red part in my juice and chunk up the white part to eat as a snack.  I like jicama and watermelon rind is pretty similar to that in taste and texture.

I'll have several sessions with her and hopefully it will help.  If it does help, it could just be that it was only a matter of time but I'm willing to try anything to contribute to my recovery.  While I don't understand it, I appreciate the ancient wisdom that's contained in acupuncture.

My next adventure in my recovery is to attend a restorative yoga class.  Friday evening I'll be attending this class at Yoga on High.  The description says:

Otherwise known as the art of relaxation, restorative yoga postures melt away physical and mental tension and deeply rest the mind and body. They also assist the body’s processes of healing injuries and recovering from illness by releasing tension that would otherwise impede recovery. Join Gail Sky, a certified advanced Relax and Renew ™ teacher and Master Level Reiki practitioner, for a weekly dose of Restorative Yoga. Receive some Reiki as well, if you like. Please bring an eye pillow if you have one. No yoga experience necessary.

Now, where can I find an eye pillow?!?!?!

Psalm 40

The last few weeks since my last post have been really great.  Not that anything in particular has happened that's great, but its just been a steady stream of "normal."  I'm back at work on a regular schedule and feel like I'm back to being productive and contributing to the work of my team.  Its been nice to have the work and all the relationships I have there returning to normal.  Its not the same as before because I've taken the time away as an opportunity to focus my work time on the most meaningful things possible so its been even more rewarding.

One opportunity I've taken advantage of is becoming a mentor to a 3rd grader through Big Brothers/Big Sisters Project Mentor.  I'll spend 50 minutes each week with a student at the K-6 Science, Technology, Engineering and Math school located in an impoverished area of Columbus.  There will be a group of us who leave Nationwide during lunch one day each week.  We'll board a bus, head over to the school and work with our mentee on reinforcing academic skills.  I'm really excited about the opportunity to do this.  I figured if Nationwide could get by just fine with me being gone for 3 months straight, they can certainly survive with me being gone for an hour and a half in the middle of the day each week.

While Columbus is a pretty progressive (compared to the rest of the midwest) and diverse city, its not very integrated as this racial dot map from the 2010 census shows.

I'm really looking forward to getting out of my suburban cocoon and helping a young student become a data nerd like me...perhaps, a girl can hope.  But at least, help them through the stress of the standardized testing of 3rd grade and help them improve their performance in school and/or appreciation of learning.  And, as has happened every time I've done something like this in the past, I feel more blessed and enriched than the person whom I'm supposedly serving.

Another piece of normal was going to Cedar Point over Labor Day.  Because of my recovery, our only travel over the summer was to Claire's lacrosse tournaments.  While we enjoyed our time together, all the trips consisted of was driving long distances, sitting in the heat and rain to watch lacrosse and, occasionally, catching up with old friends like Jay and Mark in Richmond and Christine and Jim in Philadelphia.

So, we decided to end the "Summer of No Fun" with a trip to Cedar Point.  We all love riding roller coasters and there's no better place to do that than Cedar Point.  We left at 7 am on Saturday.  We got to the hotel around 9:30, checked in, got our tickets and hit the park.  I was concerned about my endurance and whether I'd be able to last as long as the others.  Yes, Alan and I both went to our room mid-afternoon for a little siesta but I was still going strong as we walked out of the park at closing time.  I rode all the roller coasters, some more than once, and really enjoyed myself.

I told Alan as we were walking out how nice it felt to do something normal and to not feel limited by my disease or recovery, at all.

I started my maintenance chemo the day we got home from Cedar Point.  Its a pill that I take once a day that, according to Dr. Efebera is "very well tolerated."  I remember her words of encouragement about how well I would do with the transplant and how enthusiastic she was about how well I was doing after the transplant.  I know her standard of the word "well" and my standard of the word "well" are not exactly in snych.  I was concerned that I would experience some of the major side effects.  Some people have had such debilitating side effect that they had to discontinue the treatment.  That would have been very demoralizing for me. But, the good thing is that I've been on the treatment for almost 2 weeks now and haven't had any noticeable side effects.  Yay!!

Another normal activity was going to see my dear friend Tami who happens to be my hair stylist.  I've been going to Tami for almost 7 years and have followed her through 4 different locations.  We talked about whether to color my hair (we decided not to) and she trimmed it up around my neck and ears.  Tami is a strong Christian woman and our conversations always focus on faith and family.

We talked about my disease and recovery and how God could use what has happened to me for His purposes.  Tami is always so generous with her praise and encouragement and Wednesday night was no different.   She said that she believes that since I'm in a leadership role at work, interact with a lot of different people and because I'm so outgoing and open about my illness,  my testimony of faith in God and the love from others will help people see the power of a real relationship with Christ and the care of a Christian community.

As I thought about that during my evening prayers, one of my favorite Psalms came to mind.  Its Psalm 40 and its one of my favorites due in no small part to the song by U2 called "40."   This song is always part of my church's U2-charist that we hold at our town's Irish Fest.  I listened to this song a lot in the hospital and during my recovery.  I really like the New Living Translation of this Psalm and feel that these verses capture my view of my disease and recovery--

Psalm 40

For the choir director: A psalm of David.

¹ I waited patiently for the Lord to help me,
    and he turned to me and heard my cry.
² He lifted me out of the pit of despair,
    out of the mud and the mire.
He set my feet on solid ground
    and steadied me as I walked along.
³ He has given me a new song to sing,
    a hymn of praise to our God.
Many will see what he has done and be amazed.
    They will put their trust in the Lord.

As I was driving home today, I got a call from Tammy (yes another Tammy) one of the Nurse Practitioners at Dr. Efebera's office.  She said that they have a patient recently diagnosed with Amyloidosis and asked if I'd talk to her.  Tammy said the woman is only 46, very energetic and has a lot of questions about the disease and treatments. Tammy said that this woman reminded her a lot of me and she thought I might be able to help her out by sharing my experience and perspective.  Of course I said I'd love to help and told Tammy to give her my contact info and a link to the blog.

When I got home I had one of the most meaningful notes I've ever received.  The note was from Bethy, the daughter in law of my friends Allyn and Jasper.  Or, perhaps I should say the wife of my friend Reid.  I still remember when he was in high school and corrected me when I introduced him as my friends' son.  He said, "Aren't we friends?"  He's always been quite the charmer and has a very kind heart...rare combination.

Bethy's been dealing with some health issues of her own and we've been trading Facebook messages about our health issues over the last few months offering words of encouragement to one another.  We had the opportunity to catch up while we were in Santa Monica at the end of August for the wedding of Allyn and Jasper's other son, John.  In her note, Bethy commented on how much genuine love and concern she felt from me, Alan and the rest of the family as we asked her how she was doing, told her how much we care about her and told her we were praying for her.  Isn't that really what Jesus would do?  Show genuine love and concern to someone who is suffering.  I know my illness has helped me be much more caring and compassionate to those who are in need.

Whenever I'm trying to figure out God's purposes, I pray, I read scripture and I look for confirmation from the people God puts in my life.  

Looks like I got that confirmation this week.

"I'll Never Take Anything for Granted Again..."

"I'll Never Take Anything for Granted Again..." is the title of a magazine article describing actor Michael York's battle with amyloidosis.  Michael York has been in a ton of movies including Cabaret, Logan's Run and, most recently, as Basil Expedition in the Austin Powers movies.

He underwent a stem cell transplant at Mayo Clinic in July of 2012 and says in the article that his energy is returning 6 months after the transplant.  He refers to his facial bloating and lack of hair.  I found a photo of him on the internet that shows how the disease has affected him.

He said his swollen face is partly due to his meds but also from the disease itself.  "There are deposits all over," he said.  Boy, do I know that feeling.   Based on what I can tell, the photo above was taken 9 months after his transplant....so I'm doing OK with the hair growing.

Here's a photo from the wedding we went to last weekend in Santa Monica.  I have more hair than appears in the photo because it's pretty grey and the light in the photo washes it out.  When someone comments on how grey my hair is, I steal Al's old line, "I don't care what color it is, as long as it comes in."

It was really interesting to see the similarities between how the disease affected his relationship with his wife and how it affected my relationship with Al.   He said, "I discovered just how very much I love my wife [celebrated photographer, Pat York]. She’s been amazing. Like a lioness. She was so proactive. She had all the questions for the doctors, and she knew the answers – she’s queen of the internet. What she did was such a powerful thing. She’s always been so positively behind me. We have a great relationship. I’ve been very, very lucky."  All of that is true for Alan except being queen, or in his case king, of the internet.  He still gets confused between a search engine and a web browser--"I don't want to use Chrome, I like to use Google." smh

York first knew something was wrong when he had dark circles under his eyes that wouldn't go away.  The medical term for that is purpura and I've had my own battles with that.  Fortunately, I never had it around my eyes which is common among amyloidosis patients.  Mine has been mostly on my arms (and mostly my right arm) and on my chest.  Mine show up as purple spots about the size of a pencil eraser.  I've had up to 12 spots on my chest and 8 on my arm at any one time.  Right now, all of them are fading and I haven't had any new ones show up....touch wood, as Michael York would say.

As each day passes and the physical reminders of my illness fade, I'm more able to leave behind the worry of my disease that has so consumed me at points of my recovery and take the advice offered by my amyloidosis buddy Michael in this Austin Powers video.

"I suggest you don't worry about this sort of thing and just enjoy yourself.  That goes for you all, too."

Oh, and here's another photo from the wedding.  That's the face of me...and Al...not worrying and just enjoying ourselves.

How P90X and Renee Phillips Saved My Life

This is a post I've been wanting to write for some time now.  As many of you know, I completed the P90X program in the winter of 2010.  I used P90X and Renee Phillips' workout classes at the Dublin Rec Center to stay in shape after completion.  I got into really good shape for a then 48-year--old.

I didn't stay in that good of shape but I was pretty trim and muscular up to the point I got sick.  As many of you know, the first sign I knew I was sick was when I discovered my liver was enlarged.  I found this one night when my stomach was hurting and I was pressing around on my abdomen and felt this hard mass.  I asked my husband (the ICU nurse) to come over and feel it and he said, "That's your liver and its not supposed to be like that."

As I've said before, I was so fortunate they caught my disease before it had progressed and caused permanent damage to my liver and kidneys.  If I hadn't been in such good shape and so trim, I probably would never have started on my quest for a diagnosis.  And once I did, it probably would have taken them longer to come up with a diagnosis without the key info that my liver was enlarged.  The only reason I, and my physicians, could feel that my liver was enlarged was because of all the exercise I had done in P90X and Renee's workout classes.

So, I don't expect everyone to go out and do P90X or go to Renee's classes (although you'll love the results if you do) but let me be an example.  According to my doctor, my recovery would be so much more difficult if I wasn't in such good shape going into the chemo and stem cell transplant.  And it was pretty damn hard.

I don't want to be a downer but take your physical fitness and your health seriously.  You never know how it will benefit you beyond just looking and feeling GREAT!

Another Step to Normal

I took another step to normal today by going on a "big girl" bike ride with Alan.   I've gone on a few rides on Claire's cruiser bike..

Its a nice bike but its not made for a workout.

It was nice to get back out on my road bike with a cycling jersey, bike shorts and my clip-in cycling shoes.  We set out to ride around Glacier Ridge Park near our house.  It has a nice trail that winds through the park's wetlands, woods and prairie.

I completed the 9.5 mile with an average speed of 12.4 mph.  Not too bad for my first real ride and a good start to get me ready for the 75-mile Pelotonia route next year.  My biggest worry was that I wouldn't get my shoes out of the clips when I stopped and would fall over. Sad to say, its happened before.

But, I made it through with no problems.  It was a lovely afternoon.  Feeling the wind and the sunshine on my face and hearing the birds sing really made me glad to be alive...even more glad than I usually am these days.  :)