July 29: Climbing Rattlesnake and why it's important

I will leave tomorrow for NY, stay overnight there and then on Saturday leave with Lyle and Emma to get to the camp in New Hampshire. John is trying to go up a few hours earlier and mys suspicion is that he wants time alone there to mourn. As mentioned before, the camp is on Squam Lake, which is where On Golden Pond was filmed.

The time is fast approaching for my attempt to climb East Rattlesnake Mountain, so it seemed necessary to explain why it’s so important and what it represents to me.

Climbing Rattlesnake is a tradition when the family goes to camp. All who are capable of the climb go up at least once. It’s actually a very small mountain, despite an on-line search I can’t find the actual height. What I do know is that the trail is 0.9 miles long, plus the distance from camp to get there. The grade is pretty steep on a path that goes over and around large tree stumps, fallen trees and a huge number of boulders. Even those in good shape get out of breath from the climb by the time they reach the summit. But the results are spectacular: from the flat rock face at the top is a magnificent view of Squam Lake, the islands, Mount Chochorua and the White Mountains in the distance. Every year in the scrapbook I keep there are pictures of the family with this view in the background.

The last time I went up was late June, 2004. I’d been diagnosed in February, had improved for a while but then in mid-June another echo showed that the mitral regurgitation had become moderately worse. Despite this I continued to exercise, work more than full-time hours and was still expected to have several more years before needing surgery. The climb that year was difficult, but now made with the understanding the reason for my needing to stop so frequently, why I got out of breath before anyone else. I thought “This will become the measurement of my disease progression from year-to-year: if I can climb Rattlesnake.” A day or two after that climb I sprained my ankle and needed to be on crutches. My heart would race at the effort to use them, going as fast as 130-140 times a minute. That marked the beginning of the rapid deterioration, going into heart failure and then the first heart surgery in October. ‘So,’ I thought to myself at one point, ‘there will not be another ‘before surgery’ climb, now it will be a measure of my recovery’.

In 2005 I was too sick, too financially broke and too depressed to even go to camp. By the time of the 2006 trip in June, the second surgery was already scheduled for August. I didn’t tell anyone just how sick I was, how the cardiologist was yelling at me “You could die any minute. Why are you putting this off? Why are you risking permanent damage to your lungs and your heart?” But coordinating multiple schedules and being dependent on others meant a later surgery date. That year there were several older people visiting who were making the climb to see the much-talked-about view for the first time. George assured me that they would be climbing slowly, urged me to join them. Having been scolded by Dr. B for climbing stairs, telling me of my risk for sudden death from even regular activities, any climb was out of the question. I tried my best to smile and said “Not this year.” The tears were coming; no one knew that I went directly to the bathroom to quietly cry. After the second surgery and horrid thoracotomy only six weeks later another climb didn’t seem very likely. And then came the third surgery, hearing that the expectation of improvement was only minimal, the probability of a heart transplant mentioned. It went through my mind at some point in those months “I’ll never climb Rattlesnake again. The last time really was the last time—ever.” Why didn’t I stay up there longer? Why didn’t I soak in the view? Why didn’t I memorize the contrast of the blue lake with the blue sky with the verdant hills and mountains separating them—a view that no camera can truly document? Why didn’t I just sit and savor the experience?

Being at camp in 2007 was wonderful and intensely sad at the same time, because the third surgery was scheduled for the week after. I’d told my cardiologist and surgeon that this vacation was a necessity for my mental health and worth the risk the delay caused. What no one at camp really understood was the significant chance of my not surviving yet another surgery. I arrived at the cabin a couple days after the rest of the family, delayed by coping with the move and new house. The climb had been done before my arrival, I suspect so as to not emphasize my being left behind, and for this I was grateful. That week I spent long hours out on the dock in front of the cabin, memorizing the feel of the breeze across the lake, drinking in the sounds of the loons calling across the water and looking up at Rattlesnake’s rock face, trying to feel my spirit there even if my body couldn’t make the trip. I’d left instructions for after my death in a folder on my desk specifying that my ashes were to be sprinkled from the top of Rattlesnake. One way or the other I would make one more trip to the summit.

In 2008 we didn’t even go to camp because of scheduling conflicts. I knew my recovery wasn’t enough to even attempt a climb in any case. Last year was out of the question; while my foot was the obvious excuse, the real issue was that despite all the walking I’d done before the fall my strength had not returned, I was still weak and with no stamina. A hope of ever climbing again seemed very dim.

The climb up the Tor in England on the five year anniversary of the first surgery was almost beyond description. (It is attempted, however, in the Oct 16 2009 post.) It represented so much, including what a later goal had become during my illness: of being able to again travel internationally. My yearning for a place of spirituality lead me to Glastonbury and the wish to climb the Tor. My broken foot had continued to hinder my ability to exercise much prior to the trip, so it was sheer force of will, and maybe something divine, that got me to the top of this ancient place of worship. That climb sucked everything out of me for days, but the sense of exhilaration at the achievement was a huge reward. The total experience in Glastonbury seemed to stimulate a true healing within me, and also renewed my hope that it was possible to dream about again climbing Rattlesnake. (Another huge factor was the wonderful Cris, who did the microcurrent treatments on my foot. Her guidance in spiritual/psychic healing probably did more than the FSM treatments did for my foot.)

I’ve been ‘in training’ for the last several months. I’ve lost weight. I’m up to walking 45-60 minutes five-plus times a week, depending on the weather. I seek out hills to go up and down. A recent discovery was the trail in Valley Forge Park, and I’ve gone there several times now, walking for almost three miles over an hour and a half—the closest rehearsal available to ready myself for the ultimate goal.

This will be the year I plan on fulfilling that pledge to myself; hopefully it will be the first of many future trips. This climb will hold more meaning for me than anything else I’ve accomplished since becoming critically ill. It will not be marked by a finish line, no screaming crowds, no signs, no ceremony, no blue ribbon, no trophy. But it will be a moment in my life that will represent overcoming years of pending death, almost constant pain and fear, defying the odds, working to achieve a goal which seemed unattainable at so many junctures. Having valvular heart disease has permanently changed my life and some things will never be the same. But this one accomplishment will mean that I have taken part of myself back again. It’s the chance to reclaim a piece of ‘before sick’, repossess some measure of control over myself and my body. Beyond my survival, it will be my greatest triumph.

Further postings will be dependent on a signal in the mountains of New Hampshire, but I promise to do my best. Thanks for following along on my journey, Laurie

July 28: P.S.

My INR, for some unknown reason, is once again out-of-whack. It's too low at 2.2, meaning increased chance of blood clots on the valve. So taking 20 mg of coumadin a night for the next couple nights. This will probably make it too high. So for the next several days, probably a week, I'll have to test every night. I've gotten past the psychological trauma of swallowing the pills every day, but the testing always brings the terror to the front of my mind. Am I about to have a stroke? Start spontaneously bleeding? Fortunately, I have the home INR monitor, which matched the lab value perfectly. It keeps me from getting whacky with worry.

July 28: Babbling along!

At work with some time on my hands at work as the nuclear material for today is different, which changes the stress test schedule. This will give me a very relaxed afternoon, also helping me get to my podiatry appointment early. Having pain in both feet with all the walking, despite the orthotics and good sneakers. Suspect that new orthotics may be needed since the fractures. And just because they're getting older--the feet as well as the orthotics!

Chester got out the other night. I'd had a nice meditation out on the patio under the almost full moon with the temperature cool and no humidity. Nice and relaxed, feeling in tune with the universe, I gathered up my candle and earphones to go inside. Devil's Spawn (other's name for him, but appropriate at this juncture!) shot out the door. This lead to several minutes of him gleefully bouncing around the back yard, then to the front yard, with me chasing after him. He would wait until he was almost in my reach, then take off again. He's done this before, and I've learned that the major fun in his mind is having me chase him. But this neighborhood, while quiet, has a few people who really speed up the street and several cats with unknown vaccination records running around. And it's peak flea season. He's a wimp enough to not challenge another cat, startled by loud sounds enough to run from a car (hopefully in the right direction) which leaves fleas as the major threat. Anyone who has coped with those nasty things will tell you how incredibly time and energy consuming it is to de-flea a house. After waiting for another 45 minutes (it's now 1:30 am) I sent up a prayer to Bast (Egyptian cat goddess) for her protection and went to bed. Just after 3 am KC woke me with hissing and growling: the prodigal son had returned. On opening the door for Chester, KC then shot out and proceeded to chase him around the outside of the house, spitting and growling. Fortunately they both came in, although Chester was confined to the front porch until late yesterday afternoon to assess for any flea infestation. (See, those prayers to the appropriate goddess really DO work!)

This late night meant getting up later yesterday, but with the break in the weather I stuck to my plans and went out to VF Park to attack the little mountain again. I'd finally gotten the pedometer set up, which Martha had sent me several years ago. It was nice to get updates on how far I'd gone, but then it kept saying 'You've walked 0.51 miles' over and over and over. On switching to 'steps taken' I discovered that frequently it only measured one out of every 100 steps, then sometimes every other one. Totally unreliable. But going by the posted mileage on the trail maps I walked 2.75 miles in a little over 1 1/2 hrs, which isn't any speed record but considering the up and down parts it isn't bad for me. I was totally wiped out the rest of the day, had to limit activities. Today my thigh muscles are a little sore, still tired. This, to me, means it's the effect on the heart valves rather than muscular, They have been getting regular work-outs. This will be important when scheduling the timing for climbing Rattlesnake in NH, as it will probably limit activities for the day of as well as the day after. The weather is predicted to be nice for Sun, Mon & Tues, iffy Weds, bad Thurs. So maybe climbing Tuesday morning would be good, as then staying in Wednesday wouldn't be so bad. My other favorite activity is kayaking on the lake. It's wonderful skimming along the surface and doesn't bother my chest too much as long as the water is calm.

I was hoping that over time all the pillows and wedge wouldn't be necessary as time went on, but after a few trials to see it's apparent that they are still needed. It just makes traveling more cumbersome, although not the end of the world.

Thanks for checking in, Laurie

July 19: Just catching up

It was delicately pointed out to me yesterday at Fellowship that there hadn't been a posting in a while, this after someone else made a comment about a week ago. If I expect people to read this, then it is incumbent on me to keep posting!

As with many people, this weather has really sapped my energy. The unremitting heat and humidity are difficult to cope with. The last Friday before this several week session hit I did one long hike in Valley Forge Park, finally climbing the small mountain, Mt Misery, that I'd had my eye on. Despite looking at topographical charts I can't find a way to directly compare it to the the mountain in NH, but it clearly is not as high or as difficult. It is, however, the best practice in the area. But with the weather getting so oppressive, it was the first and only time so far. It took me a while, stopped frequently, a little over an hour and a half to do about 3 miles. The trail is on a loop, and there were several people I passed who were clearly making much better time. While passing one such person I commented that she was proceeding much more quickly, to which she rather arrogantly responded she'd been doing this trail for three years. As we had already gone by each other she was unaware of my muttering that three years ago I'd been near death in heart failure and about to get my chest cut open for the third time, which gives me a dandy excuse for not having been there with her.

The third year anniversary of the third heart surgery just passed: July 12. It isn't realistic that anyone else remembers all the dates involved now, although you'd think my mother would have a clue.... This year was spent in NY, taking Lyle to get his wisdom teeth out. It was done at the dental surgeon's office and went very quickly. It was funny to see him under the influence of first the gas and then post-anesthesia--he gets very giggly! This was just after driving out to Carlisle for the day to visit with Emma at ballet camp. She introduced me as her Aunt Laurie, told me that all the girls were asking if I was her mom. She doesn't really like to talk about it, and at this age being different isn't a good thing. Some of the girls know, and one in particular is either very mean or very insensitive as she goes on and on about how much she loves her mother and how close they are. Emma doesn't seem up to confronting her, telling her how hurtful she is being, and so just tries to avoid her. Considering that most adults have a hard time handling these circumstances she can't be blamed.

Not sure if I mentioned before, but Emma was asked to speak at the Relay for Life that was done in Ossining. She raised an incredibly impressive $5,000!!

While sometimes the humidity drops enough that I can go out for a walk in the evening, the other days the air conditioner gets a major work-out. One of my window units broke, so got a stronger one for this year and have it in the study. Then I can open up the windows onto the enclosed porch and use the treadmill. I've done the Pilate's a few times, but enjoy the walking more.

The weight loss proceeds slowly, but down ten pounds now. Obviously dropping more would be beneficial to so many things. While Dr. Cohn wants me down to 120, that doesn't seem realistic as even in high school I ran about 140. In 2003/2004 I'd dieted and exercised down to the 140 and see that as more likely to shoot for as a goal. Having shrunk more than an inch, putting me down to 5'3", the weight should be even lower. It stinks when the goal post moves!

With the increased exercise and really watching my sodium the lasix hasn't seemed necessary for several weeks. Last week noticed a minimal amount of swelling, then for no dietary reason my weight shot up 3 lbs, so took some today. It's definitely doing it's job and I'll be curious to see the decrease tomorrow.

The left arm seems to be totally recovered from the cat bite, but with typing seems to still be affected. After only a couple paragraphs the whole hand and lower arm started to ache. Nothing, it seems, can happen to me physically anymore without long-standing repercussions.

The family vacation starts July 31 and I'll try to post prior as to my hopes for my goal in climbing the mountain up there.

Thanks for continuing to check in, Laurie