Monday, March 29, 2010

Battered, Bloodied but still Breathing; Barely

Cliffs of insanity

At age twelve my mother sent me out onto the roof of our house to fix it. It was a flat roof over the family room that had a leak in the corner. It was my job to reapply tar to that area. At some point I must have made some terrible mistake because I remember my mom yelling out of the window commenting on my error. She then added, “How can someone who is supposed to be so smart do such a dumb thing?” Immediately, in my mind, I retorted, ‘Who said I was supposed to be so smart?’. Two years earlier the school psychologist had administered an I.Q. test; the results of which were denied to my immature eyes, but rather given to my parents. I don’t think that was fair.
Today I did a really dumb thing. Among the activities that I truly love, there is snorkeling. Floating above such a variety of sea creatures is so serene. It has been years since I have had such an opportunity. We anchored in Cabo San Lucas this morning and I was first in line to get off the boat. Once on shore we haggled a good price for a water taxi to ferry us to Lover’s Beach. This secluded beach resides near the tip of Cabo’s famous rock formations. Within minutes I was in the water while Barbie, Rebecca and Caitlin remained on shore to read and sunbathe. I had a mask and goggles, but no flippers as they were too big to fit in my suitcase. Soon I was gliding through a cornucopia of beautiful tropical fish. But then disaster hit; my curiosity replaced my better sense. From the shore it seemed that the rock formation where I was swimming might contain a passage back on the opposite side between the rocks and the cliffs of insanity. (See figure above and note white water to the right of the photo.) I decided to venture on and explore this diabolical chasm. As I swam into the narrow space I saw hundreds of fish, but soon I noticed that the force of the waves hitting the rocks ahead were pushing the fish back underneath me. I craned my neck up out of the water to see if I could see a passage through them back to shore. I could not. At the moment I was debating whether to turn back, the ocean took away all of my choices. A wave hit me, from behind or in front, I could not tell. I saw bubbles and blue and franticly swam to what I thought was up. It was no use. I could not fight the power of the waves. I was gasping now, but my submerged snorkel prevented me from inhaling water. For a brief moment I saw sun, but only a second. I quickly took a half a breath, but then was under again. I fought to regain the surface but failed. It became clear that I was not strong enough to overpower the churning whirlpool. As I struggled in vain, I was abruptly thrown against the rocks on the cliff side. I saw a small rock jutting from the face and grabbed it only to have it break off in my hand has another wave pulled me again down into the abyss. I thought, ‘How stupid I am, Barbie can’t even see me, no one can. This is it, I am out of breath, I can’t last much longer.’ It is amazing how easy it is to drown. This is the second time in my life that I nearly drown. The first time I was seven and fell into the Eel River. Fate, luck, divine providence intervened then as it did now. Soon a wave threw me to the rock side and for a split second I saw a substantial vertical outcropping shaped like a handle and completely covered with razor sharp barnacles. I held on for dear life and the wave receded exposing a rock shelf near my feet. I swung my leg up and pulled myself out with what strength remained. I stood there for a long while and breathed. My will was again my own.
To get back to shore I would have to climb over the rock. I could not return the way I came. Once the hyperventilation slowed I began the slow ascent. Facing the rock I noticed hundreds of barnacles per square foot. ’Oh well,’ I thought, ‘Our pathways can’t always be without pain. And besides, pain meant that I was still alive.’ I got to the top of the rock and saw a place free of malevolent crustaceans and sat down. I looked at the rock next to me and saw bright red blood dripping at an uncomfortably fast rate. I looked at my legs and they were also covered in wet blood. In that moment I wondered what was my platelet count. I have been off chemo for a while so I assumed that they were adequate to the task. “Go Platelets Go…..Goooo Platelets!!” I looked to the shore for Barbie. I thought I saw them where I had left them reading their books. I sat for a while considering my next move. Below me a dozen blue shelled crabs scurried sideways over the rocks. The rock face was more gradual on this side as the shelf became submerged. This was my way out. As I looked up a man on the shore was calling to me. Right behind him was a very concerned Barbie. I waved to indicate that I was alright. I knew that they couldn’t come get me, though. I slowly descended like a crab with my hands behind me and was finally back in the water with mask and snorkel in place. I swam and soon saw the man’s feet indicating that I could stand. Barbie then came and walked me back to our towels where we waited for the water taxi. Everyone on the beach was shocked to see this bloody mess of a man limping and dripping as he passed them on the sand; So much for Lover’s Beach. We assessed my wounds. I had cuts all over my body, mostly on my hands, feet and lower legs, but nothing that needed stitches.
Barbie wanted me to see the ship’s medic, but you know me, I am a surgeon. I have taken care of these types of wounds many times. Certainly I could treat myself. After a shower, Barbie lathered me with Neosporin and applied a multitude of Band-aids. I gave myself a broad spectrum antibiotic and went to lunch.
Sometime the rocks in your head and the rocks against your head meet and the result is not pretty.
I will survive to live another day so that tomorrow I can strap on a harness, hook onto a steel cable and glide a hundred feet over the jungle. At least that will be safer.

Monday, March 22, 2010

The old normal

It is strange to be where I am right now. I have found that it is not only an adjustment to have your life disrupted by a major illness in your family; it is also an adjustment to have things return back to normal. We get used to the roles we play in life; things change and we adapt. However, it is not always easy to go back to where we were. I know that last year when I returned home from the bone marrow transplant, the first month home was very difficult for Barbie. Recently, a friend has also completed a very difficult year with her son's cancer and is trying to find her way back to the daily routine. You'd think that it would be simple; but it is not. Just because it is wonderful to be better, there is also the risk of falling into old habits, old worries and old priorities. These can distract from the valuable lessons learned from the adversity. The new normal can be replaced by the old normal.
By no means do I at all regret feeling better. However, I do not want to let daily demands detract from moments of meditation and gratitude that have so lifted me during days of despair. I love that I have more strength and less fatigue; I am thrilled that my calendar is filled for the next four months and only one of those days is a doctor appointment. What joy is mine to now spend so much time again in the service of others. Yet, I must continue to remember and be grateful for what brought me here. Sometimes we can be blinded by the busyness. Barbie had defined the new normal as accepting that life would never be the same while making the best of what you have now. As much as I thoroughly enjoy recovering things thought lost, I must also hold on to things gained.
I came home today and took a nap. I was tired. But this was not the fatigue inherent to my illness, it was just a hard days work. I was in the operating room all day and did five cases. Three to carve out prostates to unblock bladders, one to unblock a kidney and a circumcision. It was only the tiredness that anyone might feel after a busy day at work. It felt good. Next week Barbie, Caitlin, Rebecca and I take a week off to go on a cruise to the Mexican Riviera. By Wednesday we will be gliding over the jungle on zip-lines. Viva la new-old normal.


Wednesday, March 10, 2010

Life in the middle lane

It has been almost three weeks now that I have been off dexamethasone (Decadron-The Transformer) and I feel wonderful. If I had to give a health score, I would be between 91 and 94. Yesterday I was in the operating room in Folsom and did 9 cases; seven of them were shock wave lithotripsy therapy on shoulders with calcified tendinitis. Two days ago Barbie told me that she feels like I am going to live longer than 5 years, much longer. I agreed.
In one way, I am a man with a plan; but without knowing exactly how I am going to get there. Going off Decadron may have a risk of allowing the amyloidosis to progress, however, an occasional vacation to 'healthland' feels really nice. It has been a while since I actually feel better than I look. (Given my looks, that's a real improvement)
I did check my light chains today to see if they increased off therapy and I will go from there. Until then, I will enjoy my respite.


Monday, March 1, 2010

Ejection fraction vs. cardiac index

Occasionally I will hear someone with amyloidosis comment on their Ejection Fraction with the idea that it correlates with the degree of heart involvement from their disease. It seems prudent to discuss ejection fraction versus cardiac index. Primary amyloidosis (or familial), when it involves the heart, tends to cause restrictive cardiomyopathy. As the name indicates, restrictive refers to the stiffness of the heart and the subsequent difficulty in achieving muscle relaxation. However, contractility may still be preserved. In other words, the heart can pump, it just can't fill. Ejection Fraction or E.F. measures the percentage of blood volume expelled by the left ventricle with each beat. As a percentage it does not tell you the actual volume pumped per heartbeat. Therefore, if you start with with a cup of blood and push out 1/2 cup per beat, the ejection fraction is 50%. If you start with a 1/2 cup in the left ventricle and push out a 1/4 cup with contraction, the E.F. is still 50%. But your volume output is 1/2 of what it should be.
Cardiac index measures the actual volume of blood pumped per minute (adjusted for body size) This is a much more accurate measure of whether your heart is working up to the capacity your body needs.
The ejection fraction can be measured non-invasively with an echocardiogram, however measurement of the cardiac index generally requires cardiac catheterization. A heart stiffened by amyloid deposits does not relax well and the right ventricle has very little time between beats to adequately fill. A fast heart rate further diminishes filling time and cardiac output drops (so do we). A slower heart rate cannot provide enough blood per minute to meet demand. The restricted heart therefore finds an optimum rate and stays there. For me it was 85 beats/min. If I took a beta-blocker, and it slowed my heart rate, I felt horrible. If I ran, I fell down. When my cardiac index was finally measured it was 1.7 L/min/meter-squared. I copied the normal range from Wikipedia:

The normal range of cardiac index is 2.6 - 4.2 L/min per square meter.

If the CI falls below 1.8 L/min, the patient may be in cardiogenic shock.

Now I know why my doctor told me to stop operating, (eventually).

Bottom line: Just because your ejection fraction is normal doesn't mean your heart is.

Food for thought.