Saturday, April 9, 2011

17 miles plus

I did a long run today in the Phoenix Park. I may have touched 'the Wall'. We now think it was closer to twenty miles than seventeen. I was running for 3 hours. When I stopped, there were a few small tears against a tree before I could speak.  My post-run legs are at their most tired since I started this campaign.  There were also some glorious miles at the 8-12 stage. The rest was surprsingly comfortable until the sudden change in the last mile/mile and a half. What a great day!

Thursday, April 7, 2011

Race Number 328

Yes, indeed, just over eight weeks to go and my race number arrived in the post this week. I am number 328.  Exciting times.

D'you know something, I am nearly prouder of this 'muddle-through' week with all its imperfection, trudging and negotiation than I have been of easier, smoother weeks. 'Muddle-through' was a phrase used by a Spiritual Director of mine, one time, when I was young and idealistic and troubled by lack of perfection. He suggested that much of life is 'muddling through'.  I wasn't sure I agreed, but it's one of those odd little moments which, for no reason, stuck with me. I wouldn't like to be known as a 'mudlle-through' person for all aspects of my life, but I'm willing to take it for these weeks of long, many-miles-to-cover, running.  These two weeks are the peak of the programme really.  There are 17 miles to be covered on Saturday. Next week, the short runs become 5 (x 2), the middle distance run is an 8 and the long distance is 18. Then, it's a recovery week. Followed by the week of the 19-mile long run where the middle run is only 5. There's a recovery week and then the all-important week of the 20-mile run, again with only 5 miles in the middle run.  Then, it's taper back time.  So, you can see how these two weeks are the most challenging. Next week alone, for instance, I am supposed to run, over the 4 runs, 36 miles in total.

The difficulty is that it doesn't leave much time for 'recovering' so that I am heading into a run tired from the very beginning.  In the book I am reading at present, Once a Runner, the repeated, sustained effort of running long distances is a central theme.  One of the figures is known for his commitment to running every single day: "On the altar of consistency he offered up no less than two portions of his life per day, seven days a week, fifty-two weeks a year (p.25)." Others join him, cheered on their first morning by the effortless pace, returning the next and so on until "the accumulation of steady mileage began to take its toll" and "The new runner would find it more tedious than he could bear.  The awful truth would begin to dawn on him: there was no Secret! His days would have to be spent in exactly this manner, give or take a mile or two, for longer than he cared to think about, if he really wanted to see the olive wreath up close (p.36)." It became known as the 'Trial of Miles', a process of separating the real athlete from the 'wannabe' athlete.   The book creates something of a mystical character out of the long distance runner, who becomes the untouchable, unfathomable hero, although living the ordinary life of a student in a university with Sports scholarships.  To prove their ordinariness, we are given accounts of the odd prank, of girlfriends and so on. 

Overall, it's a pleasant, beguiling read.  I'm not sure how much is credible; what would be considered downright old-fashioned and unscientific in today's world of athletics and how much is still applicable. There are aspects of their lives that resonate with me, however, particularly at the moment.  They run and run and run. The question of constant fatigue is a recurring theme.  He writes at the end of one chapter in which one of the characters is scoffing at those who write about running (!), particularly those who go on about the euphoria and mysticism of it. He sees those aspects as benefits, but not the end goal: "Running to him was real; the way he did it the realest thing he knew. It was all joy and woe, hard as diamond; it made him weary beyond comprehension. But it also made him free.(p. 123)."

 My satisfaction is personal, absolutely personal to me. It has nothing to do with outcomes, productivity, virtue or anything. It's just that, quite simply, in my own mind I fought the good fight this week.  I dragged myself around (albeit two miles short of the programme). That, for some reason, is satisfying.


Deer Park this morning
 Over the next few weeks, I'll muddle through.  

A Day in the City 3, (The "To-Do" List)

Pulmo Doc was concerned about the aspergillus exposure and also concerned about my recent exposure to TB while visiting Ireland in November last, even though the person with the history of TB had successfully completed the required treatment for TB several months before. "Because of the risks that come with remicade we'll need another PPD before we proceed" he said. A PPD is a tuberculin skin test that indicates exposure to TB. "We'll need to get you set up with a cardiologist too. I'll think carefully about the right one to follow you. It needs to be someone accustomed to following sarcoidosis patients as not all cardiologists recognise sarcoidosis in the heart. We'll need EKGs every three months or so to establish data and then see how we should proceed after that." The thought of this was making my heart flutter already! "We'll need to see a rheumatologist to follow the remicade infusions and of course you'll need to see an opthamologist to get regular eye exams to make sure you don't develop involvement of the eyes. And of course we'll need another CT of the chest and lungs to take another look at the lung cavity. It's best to get the remicade infusions done here in Boston at first so we can keep an eye on things and get your regular bloodwork established, then we can think about transferring you to an infusion center closer to home. And I'd like to read your medical history thoroughly and do some thinking and get together with you in a few weeks again". I felt myself wilting in front of him. I knew he was right of course, and I was grateful for his commitment to being thorough and in establishing good care but I could tell that the next several months were going to involve several trips in to Boston. I was going to get very good at this train thing!

All in all, it was a good visit. I had no doubt that Pulmo Doc was skilled in the treatment of sarcoidosis but I left with the feeling that perhaps Pulmo Doc wasn't used to treating sarcoidosis patients with remicade and that concerned me. There is a strong possibility that insurance will reject his request that I be treated with such an expensive drug. (Remember that my insurance requires me to get "permission" for any visits with specialty doctors and for any procedures). Will Pulmo Doc feel strong enough in his convictions to fight with them for me when and if the time comes? Only time will tell. My next infusion is due this coming Monday. I don't know if we can pull all of this together in time....

Wednesday, April 6, 2011

Wheeling and Dealing at the half-way mark.

I woke yesterday morning to a battle. My body and soul (spirit/will/mind or whatever) just said 'No!' 'Not going running!' With respect to all those mums, I was reminded of a toddler in the grip of tantrum.  Hmmm.  What  to do? How do I handle this?  I did feel physically 'off', nothing serious, but 'off'. We are over half-way there now, I think. I need to keep pressing forward. I decided to compromise. I wasn't tied by appointments at work so I jiggled the day around. Once I managed my breakfast, I sat at the computer and did e-mails and so on. Then, I put on my running gear and did just over 2 miles instead of the intended 4. I joined No.1 for lunch and a fine solid sandwich, before heading to the city for some good quality library time. There is a project hanging over me, which really needs to go in the next ten days. It could be part of the morning's struggle, to be honest. It just needs to go and I hadn't touched it for some time and other work matters were distracting me. By day's end, I was a much happier lady. Peace of mind had returned, I really am close to that particular finish line. I rounded up the day with a pleasant evening in Sinéad's (cousin from Dad's side) company, charmed by her darling son and herself, of course.  I have to apologise for keeping her up late, though. I had no idea it was past midnight which is a compliment because normally I am straining at the bit for my bed by 10:30!  I also admit to having a glass of wine, just a single glass. I think we were on a compromise day, body and soul. Wine is good for the soul.
I hopped out of her place this morning, nice and near to work, to begin my 8-mile run. You will recall that my first long run was just that distance, now it's the middle distance run. We shall note it as progress although, in truth, I dragged myself around. Still, I managed to do the 8 miles in 6 and a half minutes per kilometre. This is much better than yesterday's 7 and half minutes per kilometre.  The compromise day did not do too much damage.

Tuesday, April 5, 2011

A Day in the City 2 (How do you get to NJH?)

Over an hour later I heard my name called and looked up to see a white coated gentleman walking towards me. On the hospital website there is a picture of Pulmo Doc siting very tall and straight, looking bulky and well built like a football player. I recognised his face but this was no football player. When I stood to greet him I was the taller one (although to be fair, I do stand at 5' 10" in my bare feet!) He lacked the easy affable, friendly nature and banter of my previous pulmo doc and I felt unsure about him at first but I quickly came to recognise a quiet intensity that I could identify with and an attention to detail and specifics that was reassuring. He was very soft-spoken and kindness and gentleness radiated from his eyes. We chatted about my health history, chatted about my current medication regime and as expected I found myself having to justify some of that.

You may remember from previous posts that currently my main treatment for sarcoidosis is an infusion every 6 weeks of a TNF inhibitor called remicade. It inhibits the reproduction capability of the specific cells that are understood to be responsible for forming granulomas or inflammation in the sarcoidosis disease process. Remicade was developed for use with rhematoid arthritis patients, it has not been officially sanctioned by the Food and Drug Administration for the treatment of sarcoidosis. This can cause concern for physicians and insurance companies. I have heard that one infusion of remicade can cost between $10,000 and $15,000. Physicians are concerned about the longterm effects of taking remicade: increased susceptibility to developing certain kinds of cancer being a major one, heart disease being another. The immuno-suppression that comes from taking such a drug also increase one's susceptibilty to serious infection, respiratory infections in particular. Remicade has been known to reactivate otherwise latent diseases such as TB. To begin a regime of remicade in the treatment of sarcoidosis demands that one have explored many other medication options first. It is not a treatment to begin without serious consideration and weighing of the risks and benefits involved.

I imagined I could see all of this passing through Pulmo Docs mind. He was quiet and thoughtful, then came the big question. "Have you ever had any kind of serious infection?" he asked. I paused wondering how best to answer this. "Well, yes. In late 2006 I developed pneumonia-like symptoms that my primary doc treated repeatedly with antibiotics. It got progressively worse." The memories came flooding back... I had been having frequent coughing fits that became increasingly productive (think thick green mucus here, sorry to be so yucky!) and eventually coughing up blood. Sometimes I observed tiny black specks in there. This went on for months. I was losing weight rapidly. In March of 2007 I asked my primary doc if we could take a sputum sample. It came back positive for some kind of fungus. The immediate thought was that I had cocidioidiomycosis or Valley Fever, not an uncommon diagnosis in the desert southwest although uncommon up in the mountains where I lived. I started on treatment for Valley Fever while we waited for the culture to grow out some more. It takes 6-8 weeks to get accurate, specific results. Finally I got a call from my primary doc, he was on vacation but had been checking in with the lab. "It's not Valley Fever" he said. "It's aspergillus niger. That's a common fungus all around us but usually doesn't pose a problem except it finds a compatible host. It has colonized in your lung. We need to get you to a large medical facility that is skilled in treating such things. This is bigger than I can handle" he humbly said.

A CT scan of the lungs revealed that chronic inflammation had eaten away a cavity in the upper lobe of my left lung creating a perfect environment for some opportunistic and reproductively-anxious aspergillus to set up home. I now knew why my left lung hurt so much to breathe in and why it hurt so much to cough and why I coughed up little black specks and blood all the time. This was a dangerous diagnosis. If left unchecked it could be fatal. I was still on some low dose of prednisone, an immuno-suppressing steroid. That had to be stopped immediately to allow my immune system to fight back the infection. A treatment of aspergillus-specific anti-fungals needed to be begun. My primary doc had done his residency at National Jewish Hospital in Colorado, one of the primary hospitals in the US for lung disease, and had some contacts there. He started working on getting me in for a consultation. And thus began my relationship with NJH...

A Day in the City

I woke at 5:30am yesterday morning. It was the day to head in to Boston and visit with my new pulmonologist for the first time. I woke anxious and intimidated by the thought of getting there. It was to be my first time navigating the commuter rail and my route required some changing of stations and transferring to a bus. I consoled myself that all would be well with the reminder that previously, a visit to my pulmonologist required a 3-4 hour car ride followed by a flight to another state!

Stepping on the commuter rail at 7:21am I thought about hubby. This is his daily commute now. He sometimes speaks wistfully of how much more simple our lives used to be. He dislikes the anonymity of the commute, "I feel like I'm just another number" he says. I never really appreciated that fully until yesterday when I saw for myself how protective everyone seems to be of their own personal space. The train pulls in to the station, they move as one towards the carriages. They wait their turn to step on board, not much chatter, barely a few smiles or nods of acknowledgemnt to be seen, then find a spot, close eyes, perhaps read a paper, maybe fill one's ears with ear buds and off they go....and yesterday me with them, although no sleeping or earbuds or reading for me, I was anxiously memorizing my route, reading it over and over, studying the times "Okay, are we still on time here? Yes? okay, now which bus number do I need again?"

Needless to say I got there and got there in plenty of time which was a good thing as when I arrived I was told that the referral I needed from my internist/primary care doctor, that most important piece of (digital) paper that communicated to my pulmo doctor's office that my insurance provider approves of my seeing him and will indeed pay for the visit, the attainment of which was the main purpose of my visit with Primary Doc last week... did not exist. "Are you sure?" I asked incredulously. "Yes Ma'am". "Isn't there someone you can call or something....I mean I submitted all the paperwork....they told me it would get done...." "No Ma'am. All of that is your responsibility." Short, to the point, this lady wasn't one to try to sweet-talk. What to do?

It was 8am. I got on my cell-phone and started calling noting the disapproving glares of my fellow patients. I realized later that I was sitting directly underneath a large sign that prohibited the use of cell phones, oh well. Ignorance is bliss as they say except I wasn't feeling all that blissful. I called Primary Doc's office, closed till 9am, called the insurance provider, always a dreaded task, no record to be found of anything submitted by Primary Doc so nothing to work with, called hubby "Why don't you just go ahead and keep the appointment, they can bill us, we'll fight it later, you need to get in..." "Okay!" Then I sat and waited, and waited, and waited. "The doctor is running a little late" they said. They weren't kidding!

Monday, April 4, 2011

Moving House 40 Years Ago

In her earlier posts, Etty spoke of the joys and challenges of moving house. I was reminded of an early cam-corder clip from a variety of home reels my Singapore brother digitalised for us and presented to us this past Christmas. It took him the best part of six monthts, I gather.  He also added appropriate music and some titles. He did an amazing job. I asked him, if he had the time, to separate the 'moving house' clip and which I now attach here. We know it's not such good quality, better viewed small than large, but he adjusted it for the purposes of e-mail. I think, but am not sure, but he might be able to forward a larger one now that we know this works.  Etty, by the way,  is the hint of a bump on my Mam's tummy, presumably the potty is intended for her use.  Or is it Café-Java brother, seen here? I'm sure I  never, ever needed such a thing! I like the clip for the glimpse of the household bits and bobs being carried into the new house. The kind of bits that make a new house seem like home. 
Some of you will realise that several of the figures here are no longer with us. Ar Dheis Dé go raibh a n-anamacha dílse.

To Lady's View

Either the rain dampened down the pollen or the nasal spray is doing its job, but I am an allergy-free zone for the last few days and am much relieved. As I say, mostly it's not a problem, but occasionally (like last Thursday/Friday) one can begin to feel unwell enough to think about doing something.

Anyway, I headed into the hills again for my eleven-mile run this Saturday. As I left the house in Kenmare, both of us were momentarily conscious of the commitment.  There were no words, just a complicit sense of 'Here I/you go again' and 'Remind me/us why I/you want to do this'.  I gave No.1 an extra wave and as I turned back to my watch and apps, I saw him head towards the mysteries of his beloved sheds. 

In an unintended poetic gesture, I started the run at eleven am, leaving the house in Kenmare to head again in the direction of Moll's Gap. It was, as the last time, a tough steady climb from sea level to 860ft over 6 to 7 miles. I was conscious of having run this route before, checking to see if I feel fitter or faster. Alarmingly, I didn't. It is still the same hard tug and, if anything, I feel more tired. I indulge in two intervals of walking steps, counting to 60 each time so that I am consciously taking a break, not just 'slacking'.  That said, I notice a significant difference in my attitude. I am much less afraid of the discomfort now. Even as I feel my legs grow tired towards the later section of the climb, I dig in deeper, I know that there is more in there than 'seems'. I can feel strength beneath the tiredness. 

On this occasion, when I reach Moll's Gap, I turn right towards Killarney.  I found the road to Sneem, on the previous run, a bit narrow and the locals do not anticipate a jogger as they speed around corners. At least on the Killarney road, we all anticipate the hired-car tourists, the road is wider and there is a better long-distance view.  They should be able to see me coming in all my sweaty glory.  It's bliss. There are still the occasional tugs on this section, but it doesn't descend too quickly so that I am running, so it seems, parallel to the Reeks.  Spring has barely brushed her gentle hand against these slopes. The burned brown of Winter remains. Only the lambs indicate the change of season, and the warmth in the sun and the song of the birds.  I am also graced with a breeze at my back. By the third and fourth mile of this descent, modern technology had abandoned me to the joy of natural motion. I knew I was in the final two miles, but not really certain. I was just running, enjoying the movement, not floating or flying, just moving along, striking the ground, pushing off again and again in a rhythm that was easy and pleasant. Eventually, No.1 passes me in the car, unable to stop because the roads have narrowed by now. I barely wave, keep moving, knowing that we will find a suitable meeting point in a short while. The lakes on my right make pleasant lapping sounds, stirred by the breeze and there are some friendly waves from passers by in their hired cars.

And sure enough, I rounded a corner to find No.1, once again, patiently awaiting my arrival, all proud smiles.  The wry looks we had exchanged at the gate earlier were forgotten.  The effort and commitment made sense again.  I checked the distance with him, pleased to note that I had run fairly close to the 6minute kilometre. Despite my perceptions otherwise, I have increased my speed slightly. 

I was happy to stop here, at the 100 metre sign for Lady's View where the road grows narrow and windy again.  We turned the car round, headed back for pancakes and a leisurely Saturday.