Some thoughts on a Saturday — Going on five months into this battle, or is it a war, or an annoyance?
Readers who have stuck with me since the beginning might remember that with incredibly low blood counts, early on doctors thought that I had acute leukemia, which would mean possible death within weeks if nothing were done, and liquid chemo over a long period of time as the only medical option.
I was fortunate, in that the diagnosis was not for an acute form of the disease. I could rely on a less invasive treatment, and prospects for a much longer life according to the literature.
Here, now, over 120 days later of continuous writing (about 132 in all, to be exact), I am doing well, with only the pain and small side effects of Vidaza shots (my belly stings this morning). Transfusions are further and further apart. I do not bleed as easily, and my energy is returning ever so slightly. I even now perform isometric exercises and look forward to warmer weather to try running again, even if only on the Muhlenberg track, where I’ll run a lap and walk a lap. It is something to look forward to.
Nonetheless, lately, writing has not been as easy. I would like to return to writing a story. Inspiration is just not there. Frustration prevails at times. There are reasons. I still have to fear the risk of infection because my neutrophils are low. For example, I cannot go to the college gym because of the germs that are there. I started to exercise at the gym about two months ago, and almost immediately picked up a sinus infection. This means that I cannot be in large crowds and enclosed spaces. Thus, I cannot enjoy certain events, like a show in New York, or a movie, or even my first visit to the arena (I still think many policy initiatives were missed in NIZ planning, but that is water over the dam). I cannot fly on a plane or take a train.
I can go out to a restaurant, as long as it is not exceptionally crowded (think packed bar, although that is not my idea of fun). I visit my friends at the great place that I do frequent regularly and is rarely crowded.
This was day 6 of 7 for my shots in my fifth cycle. One small side effect I suffered this week was “chemo-brain.” It made concentration difficult to focus after 4 or 5 hours at work. I also suffered a bit of nausea at times, but medicine helped with that. Two more days to go!
Over four months with signs of improvement. That is a good thing. Never would I have thought to live through an experience like this.
But it happened, and I must live with the consequences as strongly and as purposely as I can.
Yesterday, a friend told me of a sad story in her family where tragedy came with no warning. I will not go into detail to protect my friend’s privacy, but again it raises the question of relative pain and anguish.
I had a good blood work report yesterday. No need for a transfusion of either hemoglobin or platelets. My numbers were stable. Indeed, platelets rose just a touch (probably not statistically significant). And yet my friend suffers, as do so many others. Of course, this makes me grateful that I see some improvement in my situation.
My short story about Catherine, the fictitious woman with bladder cancer, was an attempt to explore what happens when two friends must work their way through life-changing situations (or even life-taking). What I discovered is that much is relative in this world. I could cope with the shots and the tubes and the throwing up and the fatigue and the fear. After all, those I see at the hospital and those whom I read about have it far worse.
If I write another episode about Catherine, there is a scene in my mind that does not disappear. It is not dropping her off at the hospital front door. It is not meeting her in the lobby after parking the car. It is not watching her get her IV and being allowed to stay with her as long as possible before she is wheeled off to surgery.
No, the image in my mind is sitting at her bedside, watching her sleep, with an uncountable number of tubes and wires attached to her. It is just looking at a person who is alone, ill, unconscious, having gone through a difficult surgery. And here I am only having to go once a month and have some needles stuck into me. I have it good.
Do I still get sad? Oh yes, and I have come to know why. Health threats can cause tremendous focus. As Catherine said, “why me?” They accentuate all the other bad times. Brings them together to ponder and maybe, finally, expunge.
Right from restarting this blog, I have said “being positive” is not the phrase I use to help me get by. Truth be told, a health crisis sucks. I have said that before. It is a negative with which to cope. Coping requires, to me, admitting that the situation sucks. How one copes is key. I used an athletic analogy today with a friend. When my team was losing a game, it sucked. Perhaps the other team was far better. Perhaps we were just not that good, or made too many mistakes. Still we were taught that one should never quit and be optimistic that the next moment could bring a sense of accomplishment. If you did not quit, if you did not let the negative overwhelm you, if you just accepted that you were in the game til the end, then you could cope with losing and even gain strength to win next time.
I have had it easy. I don’t know what the next blood test will bring, but I am optimistic that I will still be here next week, and that’s a good thing.
I might even write another episode and see how Catherine fares in her crisis. I don’t know what I might write.
She slides into the car with her travel bag at her feet. “Thank you for driving me this morning.”
“Of course, why leave your car there for 5 days. That’s how long they predict you will be recuperating, yes?” He looks at her and sees the strain. Very different from Sunday, when they had taken a drive throughout the Valley and down into Bucks County to look at barns.
“Barns?” He had asked?
“Yes,” she answered. “Let’s just drive and talk. I love old barns. Old cars next to them, too! So fascinating.”
Today, though, is the operation. He closes her door and walks to the other side. Gets inside. Shifts, and pulls out from the curb. “How are you feeling?”
“Ugh, last night, I had to do all this pre-op stuff. Awful. This is my first operation, you know. Only thing ever to happen to me was a severely sprained ankle playing Lacrosse in High School. That was so long ago that I needed a formed cast, and now kids just wear boots, at least my niece did when she injured herself.”
“It is nerve-wracking, I understand.” He was glad that she was keeping up conversation.
“When you had your prostate operation, were you nervous?”
“Nervous,” he said. “Well, yes, I had one operation with anesthesia years ago, but this was different. I did not know what the consequences were going to be.”
“That I understand.” For many minutes, she looks out the window and at the corn fields as they drive toward the Turnpike and Philadelphia. “Do you like yourself,” she asks softly.
“That is a different question, right now, at this moment. Why do you ask?”
She sighs and goes on. “I struggle with this. I don’t know what to think about the surgery, and what it means, or what I’ll feel after. I’ll still have lots in front of me. I appreciate you are here, but I don’t know what it means to like myself and hope that all goes well. Do I just want to give up? I don’t feel safe, comfortable. The ground is shaky or that it is quicksand on which I am standing. Sinking is the better word.”
He is quiet and ponders her words.
“Maybe that is too hard to answer right now. I’m sorry.” She leans over and rubs his shoulder.
“No, it is a good question. I’m here, but you do have to face this yourself and not worry or be sad either before or after. I suppose you have to like yourself in order to fight for yourself. You can’t rely only on the strength of others; that’s theirs to possess. To have strength, you have to like feeling confident, emphasize being worry-free, accept the fact that you are in control.”
He pauses to pull into the lane leading to the turnpike. She continues to caress his shoulder. He continues, “I just don’t know where strength originates. How much comes from outside through your friends or family. How much comes from inside, a general feeling of I’m ok that does not disappear in a crisis or during disappointments. It’s hard if the disappointments or crises just keep coming and coming”
Her hand stays on his shoulder, really just a few fingers drawing a circle. “I am glad you are here. I don’t think I could do this on my own, but I don’t want you to feel obligated to help or be my support mechanism.”
“Do you worry that I will abandon you?”
“Yes, lifetime worry, or I should say, story of my life.”
“Were they romantic partners?
“Yes, but not my friends, in the end.”
“You want a friend?”
“Just someone who understands and won’t run away at the slightest personality difference. Remember you said how much you like a woman taking your arm? That it shows a desire to be close without it meaning anything more?”
“Well for me, I like a conversation that goes on and on and on. It does not have to lead anywhere. Just the sense that person wants to be in the same room with me. I guess for both of us it is a need to feel connected. It is different from love.”
“Is that too much of the outside source of strength for both of us?”
“Well, I know today is not necessarily one to experiment, but you could avoid taking my arm, and we could avoid talking for a while.”
“How long is a while?”
“I don’t know … longer than we can hold our breath? Ready?”
She pulls her hand away, and looks forward. He does, too. They both smile and remain quiet. The Lansdale sign is up ahead.
About a mile down the road, exactly 1 minute, she bursts out laughing.
“Michael, I think we need to practice not needing an outside indication of caring.”
“You’re right. You can rub my shoulder again, and we can talk about Philly.”
Yes, a good report yesterday, but as experienced in other months, on the first day of shots, I became nauseated and sick. Not a good afternoon into the early evening.
I go into the next round tomorrow at 9am, a little bit earlier in the day. Hope the body adjusts quickly. Yesterday was not that pleasant.
It seems that I have lost the writer’s touch these last few days. Yes, I have written, but nothing flows naturally, and I strain to put words onto the screen. I think I know the cause, and I know that I don’t want to be either truthful or forthcoming with it. It is too personal, too hard to talk about, too deeply ingrained. Talking about disease is easy. Talking about the pain and sadness of events is less so. There are things I wish to just scream about. Having leukemia just makes me want to scream louder, but I can’t.
And so the trap door shuts tight with lock and chain. The writing ease disappears. Just superfluous words are punched by the fingers on the keyboard. What is connected with meaning to those fingers, linked through the arms and shoulders to the heart and the head, refuses to transfer. I just have to leave it at that for the time being.
Maybe in a few weeks the door will unlock and open, allowing me to explore those feelings that right now are troubling and refusing to come out. Time usually heals, of course. Always has.
Maybe it is the act of throwing up all afternoon into the early evening makes one want to say, “screw it.”
Biopsy results were favorable. Slight decrease in percentage of myloblasts, a good thing. Coupled with stable blood results and clearer biopsy fluid, the doctor is pleased.
We shall go through the next round of shots this week, which will likely result in some decline in blood numbers, to be expected. Next key milestone will be in about 3 weeks. Then off to UPenn for further consultation.
This morning I begin my fifth cycle of Vidaza shots. Let’s hope I get through the week this time without feeling sick. I would hate to vomit all over my car as I did last time. Yes, that happened. Lovely. The things that occur in our lives, and should be wiped from our memory. Click.
And then, more important, I will hear the results of last week’s biopsy.
The anticipation of hearing this news has hung over me the last few days. I felt very down and continuously fought to stay focused on things I needed to get done. It is not fun, as you might understand. Yesterday’s post was easier because the hike was behind me, and I could describe what happened.
To come up with something new, instead, so to cope heroically with the malaise simply was not possible. Even now, I know where my mind is — the swamp of discontent. And look how I am writing; frustrated, lonely, unhappy. Though deeply longing to reverse these feelings.
As an outlet to say this all sucks, works for me. Readers can either listen or avoid. Their choice, of course. It’s better than I being the dullard with friends, in person, whining about how life is unfair.
But then, I get this crap out on a screen, look at it, mull it over, and think, “well this is silly.” Yes, writing does help, and I strongly advise those who are troubled by trauma that it is ok to write about the anguish (privately or publicly). Seeing your feelings in words helps. More important, translating your feelings to words can produce understanding — just why we might feel a certain way.
Sadness in us comes and goes. Sometimes it grabs and locks us into days of despondency (like the last few for me). Other times it lifts quickly and saunters away defeated at least for a while. I had been good for many, many weeks and most likely due for a setback. Triggers to sadness are all around us. So are those that promote happiness. The latter just are harder to see when we are blinded by fear or worry.
Suffice it to say that I like the other me better, the one who just goes with the flow from day to day, just accepting that there is a problem with the blood. This current morose in me, the somewhat sad one on a Monday morning, about to have 3 shots in the belly and not knowing what is next, I do not like. I just cannot force him away, though. It is not that easy. Perhaps, he simply knows when I have tolerated enough pain and graciously will give me a rest.
He wakes to the chill and the dark of a July Saturday morning, 4am, to have breakfast, make lunch, and be ready to start at 6am, 40 miles away , on the other side of the range.
Seek the Peak of Mt. Washington is the goal as part of a fund-raising celebration of the Observatory (all the pictures are “clickable.”) that monitors the science of one of the country’s most interesting mountains. Hundreds of hikers will be on the trail, enjoying a good weather day from base to summit.
Most needs are arranged and in the knapsack — change of clothes, warm jacket, safety items, gloves, hat. He needs sandwiches, dry fruit, gorp, granola bars, plums, water. The last items that are to go in and easy to obtain.
Throwing off the blanket and comforter (it gets cold in New Hampshire during mid-July), he pulls on tan cargo pants, his wicking tops, and socks ready for the day. Food is organized, packed. No need to rush, but he is glad to wake early into the dawn.
It has been a good summer so far. A trip to England and then Dubai to see his son and his family. Never had he seen such beauty like Wales during a long day of driving from Cambridge to the coast and ultimately to Bath. Back in New Hampshire, he enjoys three long hikes to 3,000 feet over tiring, but satisfying eight-hour days. Today is especially exciting. He has not climbed Washington for four years, and he plans to use different trails on the west side to the 6,288 foot top, most likely a 10 hour day.
All is pulled together, and he steps out into the pre-dawn air. The sun is just showing signs of arrival. Valley fog is a soft grey against Popples Peak, 6 miles away. Yellow and orange brighten the sky.
The 40 mile drive to the trailhead crosses over Hurricane Mountain, into Bartlett, and on to Crawford Notch. Looking northwest from Route 302, heading into the Notch, Washington stabs into the purple sky, and awaits the hundreds to enjoy the challenge. 302 continues along rising toward Mt. Willard and Mt. Webster reaching height of land at the AMC Highlands Lodge and the trail head to Crawford Path which leads up to Mitzpuh Hut and over Mt. Pierce, Eisenhower, and eventually Washington.
Soon he reaches the Base Station Road and the parking lot. Stretches, puts on boots, ties tightly, adjusts knapsack, locks car, stores keys, and he is off — 3.9 miles to the hut, where he will have lunch.
Entering the trail, walking within a damp grove of maple trees. It is cool and dark. He knows to take his time, and not rush. It is a day of enjoyment, in the woods, climbing upward, meeting fellow hikers, looking forward to being above treeline and drinking in a view that is to die for.
Soon the trail slants upward. The Ammoonosuc trail is one of the shortest to the summit, but is steep. It stays within the trees for most of its route, emerging from scrub about 100 feet to the Lakes Hut. After an hour, he arrives at a pool with a small waterfall feeding it. He meets up with 3 guys stopping for a drink and about to take off. They started just before he did. He remembers seeing them at the parking lot. They all chat a bit and share information.
Facing a steeper slope, he trudges along, step by step. The trees get shorter, the trail rockier. The sky is bluer as the sun rises to the east, its rays blocked by the summit. It will not be in view for a while. Hiking alone is an extraordinary experience. The mind blanks. The world is a million miles away. The body works. Breathing is deep. Muscles ache. Reaching the tree line is not totally necessary. Throughout the Presidential Range, lower hikes still provide wonderful views, but the time away from Mt. Washington has meant not being able to drink in 360 degrees of treeless splendor.
He grows happier as the trees grow shorter. He arrives at his first major water break, two hours into the hike, sits down and looks. It never gets old to stop and look. Starting early is a good idea. He has lots of time to just enjoy the day, he thinks. The sun is out. Cannot ask for a nicer day
Pack back on, he starts out again, over slabs of granite, holding on to limbs of trees, scrambling and careful when any are wet. In a while, up ahead is an older gentleman slowly making his way. A few minutes he catches up. The two meet and share stories. The man will only go to the top and then take the Mt. Washington Shuttle down (more about that later). “My knees cannot take going downhill,” he says. “I have been hiking this mountain for years, but knew when to shift gears. Still, I love this hike.” They make their way together, talking about life and ideas. He, too, is a teacher (retired). The trees get shorter and shorter. They cross into the Alpine Zone. The edge of the hut can be seen above, at the edge of the ravine. Not far to go now.
Always seem shorter, though. We still need 30 minutes to reach the hut. What a pleasure to do so. A bunch of hikers are outside resting, basking in the sun. Most of the hut’s guests have left for the day, either to the summit or down the mountain. The Cru (traditional name) are cleaning and preparing tonight’s dinner for 90, yes 90 hikers. The hut is a great wayside. Able to use the toilet and replenish water.
Ahhhh….lunch. He sits down and pulls off his boots and socks, checking the moleskin covering on his heels that protect against blisters. Nothing! Good job. That is the worst thing on these hikes. Blisters. He sees Washington in the distance. Savors the view. Not too far. About a mile and a half. Looks further, of course. And still, some steep climbing. For the first time he feels fatigue.
Boots on, he sets off, now on the Crawford Path, which will take him to the peak and his goal. He has walked this path before after climbing the east side of the mountain up through Tuckerman’s Ravine and visiting the hut. He knows it will be difficult. For a while, though, the walk is flat.
He passes one of the Lakes of the Clouds, and looks back at the hut. Very little can match this, and just another reason to be here. He continues along. The trail follows flat rocks and is not too difficult, actually, perhaps the easiest of the day. Just one foot after another. He knows what is ahead, though.
Above the tree line, there is so much to see all around. He stops from time to time to take it in, then continues upward, anticipating that final push to the top.
Sounds easy, but many people have died on Mt. Washington by not taking note of how quickly the weather can change. Freezing temperatures in mid-summer, fast approaching thunderstorms full of lightning, heart attacks. Any number of risks when taking on the mountain. He passes by the National Forest Services’s warning to go back if bad weather threatens. Having hiked here many times, he knows what to have and when not to seek the peak.
Beyond the warning and further up, he takes a final look backwards at the hut and then upward to the radio/tv/weather towers attached to the Observatory. Readers who do not know should be told that there is a road and a railroad that reaches the summit, along with a science laboratory staffed year-round. The solitude of a hike will end when he reaches the top and must mingle with the tourists who have chosen the easy way. This time, however, he will appreciate the warmth of the welcome center and the opportunity to sit and eat again and get warm. Strangely, he feels this hike is different from others. He cannot detect why. He has had no problems in the other hikes this summer. Now he feels weak, and cold. He stops and pulls his warmer jacket out of the pack.
The last several hundred yards are tough. Step after step, with occasional stops for rest, he makes his way to the summit. He is struggling. Climbers are in front and in back. It is about the time that many will achieve their goal. He is tired, but pleased and happy. Yes, he feels different, but again, perhaps for the 10th time over his life, he has hiked Mt. Washington and is proud.
Over the lip of a rock, around the corner of the building, and there are all the people. It’s ok. The sun is still out. People are happy, milling around. Taking pictures. He walks slowly heading toward the welcome center and the actual summit marked with a sign where people are waiting to show that they, too, made it to the top, even if it were by vehicle. His turn comes, and a nice woman offers to take a picture.
He goes inside the center and plops himself down to eat. He is shivering a bit, and pulls out extra clothing and gets out of his wet shirts. Sadly, now the sun has quickly become stuck behind haze, and the temperatures have dropped, as well as his energy. He ends up spending an hour here, recuperating, thinking about the planned hike down the Jewell Trail along a ridge that will descend to the parking lot, making for a day’s loop.
During this time, he has a wonderful conversation with several hikers while he eats. He is feeling better, warmer. Energy has returned. The day is not over, though, and he knows he should get started soon. He will pass by the Great Gulf and have incredible vistas.
Finally, he is ready. Packs up his stuff including the sopping wet shirts from which he has changed. The warm clothes feel good.
He steps out onto the center’s viewing platform and looks around. Coming up from the Base Station is the Cog Railway Engine and car. The auto road is just behind. Each car is a different color. A red one is already at the summit filling with tourists wanting to go down. It is interesting that because of the steep inclines of the railway the engine can be adjusted to stay reasonably horizontal.
Down. He starts. 5 miles to the base. The trail stretches out before him.
As he walks, and the trail becomes steeper. His toes begin to hurt. His knees are sore. He is breathing more heavily. Never has he felt this way, and he wonders, but then just throws it off to a tough day on a tougher set of trails. He gingerly makes his way over large rocks requiring his hands to steady himself. He is above the tree line for some time, but eventually enters brush, which helps find handhold. Just before, he looks across the ravine and sees the Hut in the distance. Solitary, small, a blip on the ridge.
It is 4pm, the Observatory’s Party for climbers is to start at 5pm, and he knows he will be late, which is ok. He continues on into the trees, thinking the trail will end soon. But it does not. He goes on and on, becoming more and more sore, aching, hurting. It has been a long day.
And finally, at 5pm, he comes out to the road and Jewell’s Trailhead. 11 hours.
He limps slowly across the road to the parking lot and up to the car. Pulls out his keys. Opens the door and sits down. Boots off. His toes are free, but in great pain and the big ones are black with bruising. He is exhausted, though still happy. He takes his time with the pack and clothes, again changing to dry clothes he has in the car. It will take about 45 minutes to drive around the mountain to the party site. He is patient, but hungry. Awaiting him is a full-course turkey dinner, courtesy of the Observatory. After all, he has raised over $300 in his fund-raising efforts. He’ll look forward to dinner.
It’s a full day, but he is more tired than he has ever been after a hike. He gets dinner, and listens to the award ceremony, but does not stay long. Heads back to the cabin to fall asleep.
As he drifts off, he remembers a hike up Tuckerman’s over a decade ago. On the way down, he passed a very elderly man making his way slowly, almost feebly, up the mountain. He thinks will I be like that, still able to seek the peak? His eyes close.
One fine day.
And then, it’s just within weeks that he discovers he can no longer run at a distance. He is out of breath easily. Within two months, he is thrown on a bed and stabbed with a needle because his body has given up on producing blood correctly.
One fine day to remember.
He hopes he can have another just like it some day.
It is Friday morning after a long, long sleep. I had been up to 2am the other night, and felt the result last evening, as I went to bed at 9pm, sleeping straight through til a few minutes ago (7:45). Still groggy, but thoughts I composed in my head while drifting off are gone, vanished. I am frustrated by this.
They had nothing to do with the serial I have been writing this past week.
That story was a first attempt, ever, to just write in a way to express feelings through fiction. Interestingly, several people thought Catherine was real, and that I had met someone with whom a relationship was developing. I smiled and laughed with others at those comments because for my entire life I have not trusted my ability to write. Even in college I was told by a professor that I did not deserve to be there. In this case though, it seems that the story was expressive enough to project reality. A milestone?
Catherine was a foil to allow me to draw out more of my struggle at living with disease. Her name was my second choice for my daughter Victoria. There were tidbits in her description and personality that perhaps represented an ideal friend, but she was imaginary. This morning, she is far away dealing with the HVAC guy and getting ready for surgery. Maybe I did not want to deal with the trauma associated with writing about someone having surgery. Maybe I was getting too close to her? Maybe she was too ideal?
In contrast, whatever I was thinking last night was about beliefs or emotions that were not going to be embedded in a story. I felt that I was running out of episodes, at least temporarily, and returning for a few days to a format where I would just report my feelings was appropriate.
Even after writing the above few paragraphs, memory is not returning. I have no idea what topics were on my mind. Whatever they were are right now locked miles below in the crevices of my mind. Frustrating. I had reached deeply. Touched them. They were important, moving, another springboard toward coping. Gone.
Ummm, I just inserted a sentence above about Catherine having surgery, and that brought back into my head the receipt of yesterday’s mail. The hospital had notified the transplant match organization to send me material. Even though recent tests show signs of recovery, doctors are still talking bone marrow transplant. I knew this. The mail reminded me.
Might that have triggered a writer’s block?
Today I do have writer’s block, but look! I have written. I suspect that is a good thing.
It is snowing now. I’ll take a shower. Get dressed. Head off to school. Try to shake off a small bout of sadness.
I wanted to touch and explore last night’s feelings today, but poof.