A study in contrasts

The open expanse of the South West supports a panoramic view out to the horizon, as far as the eye can see. (redundancy...boy it is late...) Some people feel openness and exhilaration, where the sand and dirt meet the sky in painted plateaus. There is so little to hide behind, so little protection. It’s hot, dry and unforgiving, yet beautiful in its sharp contrasts. Everything feels exposed.

The austerity and strength of the landscape offer the world up in sacrifice. “Take it all!” it seems to cry. Never without direction one starts down the road fully informed not only knowing where they are heading, but with equal ability to look back at where they have been. No excuses. Period!

The North East is a study of contrast as well and affords its drama, first by way of its changing seasons. They provide constant opportunities to challenge our sensibilities. I experience it all, the hot, the cold, the lush green protectiveness of summer foliage, the bare it all bleakness of an overcast winter day, as well as the transition seasons of autumn and spring preparing me for both extremes. These seasons offer comfort at the very least, by their certain predictability. The landscape plays its role in the drama as well. The NE’s unfolding foliage provides protectiveness along with its beauty and warmth. Even in the winter cold, the trees’ skeletal branches seem somehow able to keep the sky at bay.

I might not be able to see what’s coming, even if it’s just over the next hill in the NE, but I can duck and cover when necessary. The weight of the sky won’t crash down on me. I can’t easily see things coming from far away like the SW and get to experience it all bit by bit, enjoying each morsel along the way, because I'm not wasting time looking behind or wondering what’s coming down the road. (If there is even one that continues around the next bend of trees.)

How much of our personality comes into play when deciding where to live? How much does where we live, shape our personality? Or do we just gravitate to what is most familiar?

Why do I stay up late at night thinking about this stuff when I should be asleep?

Too young to be old

Yesterday, George Carlin…died at the age of 71. My Dad always appreciated his humor. And his mark on the world of Comedy surely will live on.

Living to 71, though perhaps not young, just doesn’t seem that old to me. We all go through life believing we‘ll have more time. We know that we’ll have to die at some point but that day is certainly not today, tomorrow, or for years to come. I certainly don’t feel middle aged. My friends have had children into their 40s, yet are statistically middle aged? I still feel like I’m 25 regardless of what my physical body reflects. So the older I get, the further my definition of “old” shifts. Would it be a gift or a curse to KNOW how much time we had in the world?

Thank goodness our future is a mystery.

The Law of Attraction

The Law of Attraction in its most simplified definition, “like attracts like” is an interesting and seductive idea. It offers the illusion of control over my present lot in life and an ability to shape my future. All I have to do is embody that desire. Wine it. Dine it. Hold it close to my heart and believe it to be possible and it is mine to manifest.

If only it could be that simple.

What ever I am focused on is what I see and in that sense I do create my reality. For example, when I got a new car I became hyper aware of all cars around me of the same make and model. It seemed like they were everywhere, though I had never noticed it before. After Peter’s diagnosis it seemed that everyone around me was coming down with cancer. That wasn’t the reality though. It was just a byproduct of where my focus lay. Maybe it should be called the law of focus.

Even then it doesn’t even take into account the freedom we gain from embracing that which we most fear. When I push something away it just seems to bring it more power. Even pain works on this principle.

With the birth of my oldest…I experienced the worst physical pain of my life. I can still to this day remember with vivid clarity the pain and feeling as if I were in fact dying. The pain was agonizing and I fought it every step of the way. What a vicious negative feedback loop I created.

With my second pregnancy we decided to try hypnobirthing. Now, I have too many control issues to have been able to get the full benefit of that technique, but WOW what a difference it made learning how to embrace the pain and meet it instead of railing against it. It hurt, but incredibly, it was completely manageable. So in embracing the pain, accepting it, in a sense focusing on it, not only did I not manifest more pain but diminished it.

Compassion is complicated...

So I am reading an article in Newsweek about oncologists and their patients. The article talks about the importance that compassion plays in the quality of care a patient receives. The article is filled with statements from patients who were grateful for their doctors’ attitudes and felt encouraged by them. I automatically think back to my experience with Peter’s doctors. Having experienced both indifference and caring attitudes through my husband’s illness, I feel I have a unique perspective.

Peter’s cancer was found after getting an MRI for a suspected slipped disk. A day later, we got a call from the Orthopedist in Concord, stating that though his spine was fine, they had discovered a pelvic mass. The doctor gave us the name of a surgeon in Boston after informing us that there was no specialist in the state of NH that dealt with this type of thing (our first clue that this might be something serious). He apologized for doing this over the phone but that he was going on vacation and needed to tell us before he left and then hung up. This conversation took maybe 2 min….and only after my husband hung up the phone did we realize how little information we had. All the Dr. said was pelvic mass. Was it suspected to be benign? Was it a malignant cancer? He didn’t say how big it was or whether that was indeed the source of Peter’s pain etc. It took over 2 weeks to get an appointment with the orthopedic surgeon at Brigham and Williams Hospital.

On the day of our appointment, after waiting most of the morning to be seen, (you are forced to be patient when you are a patient), we were finally put into an exam room where there was a computer (delightful how the medical profession has embraced technology) displaying Peter’s pelvic x ray. The monitor had been left on by accident I am sure. Up till this point we knew nothing , had been given no details and had felt only an inkling of the seriousness of our situation. Having a medical background and much experience with taking, developing, and reading x rays, I found myself staring in horror at THIS x ray, trying desperately to come up with some alternative explanation as to why half of Peter’s pelvis was missing. I instinctively KNEW what I was seeing but couldn’t bring my self to believe it, nor had I the strength to explain what I thought I was seeing. Now if this wasn’t bad enough….we were left to wait yet again for over an hour…just the three of us, Peter, myself and this horrible x ray. So we sat and made small talk ,trying to ignore it. At one point Peter said “Wonder why we can’t see part of my pelvis there?” I said in a wishful tone staring at the floor, that perhaps the mass was in front of it, blocking it’s view.

It was pure torture waiting for the specialist. But finally he showed and very detachedly and plainly told us about the tumor. It was the size of a grapefruit. It had invaded and eaten away, literally, replaced a significant portion of his pelvis. It was an extremely rare and aggressive type of Sarcoma. It had a high rate of metastasis and that he hadn’t seen a case where the tumor was this large and hadn’t already spread. So an entire body scan was necessary. Now truthfully, I don’t mind when a surgeon lacks a bedside manner. I want a surgeon who is calm cool and collected. I want him to be decisive and confident to the point of arrogance as to his ability. So any lack of compassion on his part is forgiven in my mind. The x ray snafu, though certainly not compassionate, was hopefully a simple mistake.

So now enters Peter’s oncologist. We had a surreal moment at our first meeting. After simple introductions Peter with his charming big grin and determinedly positive attitude said “So… what’s the plan?” The Dr. dramatically took off his glasses, fell down in his chair, put his head in his hands and in a defeated tone said “I don’t know. I don‘t know. I just don‘t know.” Peter and I looked at each other, horrified by his reaction. Now maybe it’s me, but that type of bedside manner didn’t just lack compassion, it was cruel. I mean, how can you have confidence in a Dr who has admitted his defeat before even entering into the battle? SO I knick named him Eeyore. He treated Peter with no hope or expectation of his survival. I would have changed Dr.‘s but Peter decided to see past his defeatist nature. I remember when we asked Eeyore if he thought another round of chemo might shrink the tumor more. He merely shrugged his shoulders with a bemused smile and said he didn’t think it would make much of a difference but that we could if we wanted to. The subtext in my opinion was that it was a lost cause either way.

I remember going back to the Surgeon with the results of Peter’s scans and how surprised he was to see that they were clean and that the tumor, despite its size seemed to be completely contained. That is when I dared to hope that Peter’s case might be the exceptional one. For some unexplained reason his body had been able to contain this cancer and would keep doing so till he got his surgery. I had always felt that he had led this sort of charmed life and though as horrible as this experience was, I now dared hope he would pull through.

That brings me to the next chapter of the story. We decided to pursue a second opinion from another excellent orthopedic surgeon at MD Anderson in Houston TX. The surgery Peter was to require was radical to say the least. The choices were between an internal or external radical hemi pelvectomy. And Yes it is as bad as it sounds. So we wanted a second opinion. I can’t say enough good things about MD Anderson. They were professional, friendly, optimistic, and COMPASSIONATE! Unfortunately he took a turn for the worse during our visit and we ended up staying there to continue receiving treatment. His new oncologist was refreshingly lovely, gentle, and encouraging in manner. She wasn‘t going to give up on us! But in the end, those very qualities were largely responsible for even more pain and suffering.

I think a compassionate attitude can take many forms. What is perceived as compassionate depends on where the patient is emotionally as well as physically.. In the beginning, so much of our energy went toward fighting the doctors’ negative attitudes. Then at the end, we were encouraged to fight fight fight! and deny the painful reality that despite our best efforts, the end was coming. I wish we had found the optimistic doctors in the beginning and the realists at the end of his illness, who could recognize when it was indeed time to give up. There is such a fine line to walk between providing hope to a patient and their family, and knowing when to encourage acceptance of the end. To engage in a truly compassionate doctor patient relationship one needs to consider both the patients’ emotional and physical limitations and also be able to answer the question; at what point is it appropriate to stop encouraging a person to fight for their life and embrace and plan for a “good “ death.

If that even exists.

Subtext

Is it a useful skill reading into the subtext of a conversation? Is it an ability to be cultivated or extinguished? There seems to be a certain arrogance to it....reading between the lines of what a person is saying, drawing inferences that in actuality may be completely invalid. Unless there is a general mistrust of the other person's ability to directly communicate, should it even be necessary. Perhaps in the inevitable void created by things left unsaid, one can't help but to try and attribute meaning, whether it exists or not.

I also wonder if it isn't a little passive aggressive to expect a person to understand the motivating force lying beneath a conversation and to read between the lines.

It is finished

So, here is the thing...It's one thing to screw something up and disappoint yourself...it is an entirely different thing to screw up and disappoint someone you love. And in this case I paid the price with my self respect.

Since Peter passed, there are days, weeks even where I kinda float through my day in a bit of a fog. I get overwhelmed with all that I need/have/want to do. Balancing the kids needs with my own is a constant struggle and I have no one now to share that burden with. I tend to put their needs ahead of mine and that's where Dana's dance class comes into the picture.

I put Dana back in dance class the summer after Peter died. She still enjoyed it and I wanted to keep everything as normal as possible...so off I went every week. The thing is, that the last event Peter got to do with us as a family was going to her dance recital in June. He had been in horrible pain sitting through the recital and I could hardly pay attention my self with my worry over him. As a result, bad memories associated with dance stay with me. Attending the recital is always highly emotional.

So Dana did dance again this year. It was a larger class and made up of many Moms with young kids/babies. It was crowded and noisy and just unpleasant waiting for her to be done with class each week. Sienna needed to sit there and do her homework, forcing me to sit there as well and listen to many of these women complain about their husbands, when all I wanted to do was slap them upside the head and tell them to thank their lucky stars their husbands were alive and healthy.

I hated going each week to say the least. Sometimes I would block it out and just forget to go...And now we get to the meat and potatoes of the story! I FORGOT TO GO TO THE DRESS REHEARSAL! Now this is a huge mistake. It is clearly stated in the agreement with the studio that attendance in the recital is contingent on attending the dress rehearsal. I screwed up big time and now my daughter was going to be punished for my mistake. I was to see her instructor the next day for class and hoped I could persuade her to make an exception. Well I got a phone call that next morning from her teacher, who proceeded to verbally accost me. Now you have to understand I have never had any interaction of significance with the instructor over the past 3 years. Our exchanges have always been pleasant and unremarkable. Even so, you get a general feeling about a person and I never would have expected in a million years the exchange that was to take place. I felt like a deer in the head lights being repeatedly rammed by an SUV. I was very apologetic and showed the appropriate contrition given the egregious mistake I had made, yet nothing I said seemed to satisfy her. How many times in how many ways can you say you are sorry and that you really messed up? I cried, I begged, she just kept repeating over and over her policy that if you don't attend the rehearsal you can't be in the show. After 20 minutes of this I finally said "Look is there some other way I should be apologizing? (was she looking for a bribe?) At that point she must of felt she extracted her pound of flesh and that I had suffered enough. I can only imagine how stressed she was getting ready for the show...but come on. I allowed my self to be the punching bag she needed to get out her frustrations, and gave her the power trip over deciding Dana's fate, I guess she needed to feel in control that's for sure. And all for the price of my dignity and self respect. Boy she made out real well in that exchange.

If this wouldn't have affected Dana I would have had it out with her. She just wanted to beat someone up. If she wasn't going to let her in the show she could have simply called and stated her policy, express her disappointment and be done in under 3 min. She knew she was going to let her be in it, but wanted to make me suffer first. BUT I AM DONE! FINISHED! NEVER will I do DANCE CLASS again!!!!!!

yeah me.

When does the big guy rest?

One day, god said "Let there be water behind Kirsten's walls." and deemed it good. On the subsequent days he manifested mold and also was pleased. But not feeling all was complete in his creation, carpenter ants were brought into the equation. Then smiling down on his creation, rested in the knowledge that I was, indeed screwed.

Ok pitty party over. I have the knowldge and ability to fix it...just disapointed at the inconveience of it all. Got to flirt with my favorite Home Depot guy when I picked up the drywall. Just goes to show there is always an upside to any event, sometimes it just takes a lot of searching to discover it.