Another Before and After

As my longer term readers know, I’ve done a series of Before and After blog posts.  Most of them last year focused on how much better I was doing before I got sick and how I was struggling in the after.  Now, as I get past the first anniversary of my diagnosis and treatment, the after is so much better.

At this time last year, I was ending my stay at The James (The official name is “The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute” but I know it well enough to be on a first name basis. Hell, we slept together for 22 nights.)  Right about this time last year, I was discharged from the Bone Marrow Transplant Unit at the James to Dodd Hall Inpatient Rehabilitation Hospital, another Ohio State University facility.  My stay at The James resulted in me becoming very deconditioned.  The amyloidosis caused me to have significant fluid issues and the chemo used in the stem cell transplant only added to the problem. 

My “dry weight” when I went into the hospital was probably about 115 pounds but my total weight was 150 lbs.  I gained 6 pounds after one day of harvesting my stem cells because of the IV fluids they gave me.  I got up to 170 pounds in the hospital.  So, I was very weak from the disease and the chemo and had about 60 pounds of fluid in my thighs and abdomen that I had to cart around.  The fluid in my abdomen compressed my lungs so it was difficult to breathe deeply.  All of this conspired together to keep me flat on my aching back for about 2 weeks.

I have a copy of my medical record that I got when I went to Mayo Clinic for my second opinion.  One of the things I’ve enjoyed reading is the progress notes on my inpatient record over the last 2 weeks.  I was at my lowest point in the fight against this disease and it’s wonderful to see how much better I am this year than last.  As I shared on Facebook yesterday, I was preparing to go on a 20-mile solo bike ride and decided to see what I was doing one year ago.  Here’s the progress note from my medical record--"Worked hard yesterday at mobility. She was up and walked an entire lap around the unit and sat in a chair. She is very tired this morning, but wants to be up more later. Still eating little amounts. Diuresed well with Bumex but Ascites still quite symptomatic."  Yesterday, I rode 19.55 miles at an average pace of 14.4mph…by myself.  Now that’s a before and after!

One activity I missed last year was attending Claire’s lacrosse games.  It was her freshman season and she ended up being first team all conference, second team all district and the second leading scorer on her team.  Normally, I attend every game of hers and take a lot of pictures but I couldn’t attend any games last year.  I’ve prepared the year-end video for her field hockey team and was planning to do the same for her lacrosse team last year but I couldn’t because of my hospitalization.  This year, I’m responsible for taking pictures of the varsity team and preparing the year end video.  In the past, I might have been concerned about being responsible for both.  Now, I’m thankful I can go to all the games, take pictures of the play and compile those into a commemorative video. 

Last year, one of my first outings was to attend Claire’s lacrosse banquet.  I was in one of my big lady shirts, elastic waist pants, hat that Amy had knitted for me and sitting in my wheel chair.  It was hard because I didn’t have the ability to walk more than a few blocks at the time and the prospect of being up and out for more than an hour was overwhelming.  Contrast that with Saturday when I left my house at 7:30am, drove 3 hours to Indianapolis, attended the Patient Day at the International Symposium on Amyloidosis, drove 3 hours back, photographed Claire’s lacrosse game, went to dinner with some of the parents AND…had a beer!!  That’s another big before and after.

  

I’ve also been able to return to my pre-illness wardrobe.  From March 2013 through November 2013, my abdomen was so bloated from the effects of the disease and transplant that a big portion of my wardrobe did not fit—jackets wouldn’t button and neither would lots of pants.  Now, I can go into my closet in confidence knowing that whatever I choose will fit.  Clothes shopping is such a chore for me and selecting outfits is, too, so this is a small, but significant quality of life improvement. 

 

As a native Floridian, transitioning my wardrobe as the seasons change is challenging. In Florida, I had one basic wardrobe.  For the 2 months that I needed a “winter wardrobe”, I just put a cardigan on top of my summer wardrobe.  No change required for spring and fall.  I’ve really struggled with what to wear this spring and was getting really frustrated until I realized…I didn’t wear any spring clothes last year.  It’s been 2 years since I wore most of these clothes.  My spring and summer wardrobe last year consisted of yoga or sweat pants, a tank top that I could wear under my abdominal binder, a loose blouse and tennis shoes.  Since I only weighed about 100 pounds once I lost all the fluid, I would usually wear a hoodie to keep me warm since I had no body fat.  But, it had to be size large to fit over my stomach.   Most of these clothes were purchased at Target while I was still in the rehab hospital (they required that patients dress every day) or after I was discharged.  God bless Alan and Amy for being my personal shoppers in the beginning.

I was going to physical and occupational therapy twice a week in May and June so the therapists got to know me pretty well.  The physical therapist, Vanessa, would often ask me where I got a piece of clothing I was wearing and the answer was invariably, “Target. I just bought this because I didn’t have anything that fit.”  At some point during the first month, Vanessa coined the term “rehab couture” and if she asked about my clothing, she would start with the question, “Is that part of your rehab couture?”  We had some good laughs with that.  A few of those pieces continue in my wardrobe.  Let’s just say I’m not wanting for lounge wear.

While at the Amyloidosis patient day on Saturday, I sat at a table with three other patients.  Each of us had undergone a stem cell transplant and one had also had a kidney transplant.  We all talked at length about how fortunate we are.  That’s right, four people with an incurable, life threatening disorder who have each had their bone marrow drano’d out by a mustard gas derivative were calling themselves lucky.  Yes, having this disease stinks and the transplant was so physically and emotionally hard but each one of us has a normal life.  For many with this disease, a normal life isn’t possible because of the organ damage caused by the disease before they get diagnosed. 

Everything feels so normal now that the before of last year—weakness, pain, fainting, stomach problems…and the big one, fear—seems so far away.  I have flashbacks to those days and it makes me so thankful for the freedom I have now.  Dealing with the limitations of a serious and potentially long-term illness is a type of oppression.  It takes away some of your most basic liberties, like the ability to just go where you’d like and do those things that comprise a normal life.  I feel a special type of freedom just being able to walk outside!

For my first stem cell birthday party, I put together a slide show depicting the 12 months around my transplant.  I turned it into a video and posted it online so others can see my transplant recovery.  You can see it here-- http://vimeo.com/92131205 As I think about the last year, that freedom to do simple things I enjoy is how I’ve measured my recovery.   

As I think about this series of befores and afters, here’s what I know:  No before is permanent.  If it’s a before that you like, cherish it because you never know how long it will last.  If it’s a before that’s trying, just keep pushing ahead knowing that it will change.  Again, nothing is permanent.  As my friend Jim told me last year, every before eventually becomes an after.  The work done in the before defines the quality of the after. 

Now, I'm not saying that work alone can create the after. The after that comes is due to so many things beyond my control. It may not look like before, or even an after I would have chosen. But, the only things I can control are my work in the before and my attitude toward the after.  And I'll give those two things the best that I have. 

So, I’m enjoying this after and pray that I’m ready for whatever changes when this becomes a before.