The Unexpected Journey

I find "blogging" interesting in many different ways. I read very amusing blogs where people have created anonymity by using altered names. I read blogs that have all identifying features listed. I am not certain who reads my blog. I created this is an outlet. I fear it will be somewhat bipolar -- the dogs and my photography are my fun side. The rest of my life is far too serious.

There are times when I want to write about life -- however, I do live in a small town where EVERYONE is related (seriously). Although it is easy to poke fun at the place in which one resides, I do love living here. It would be a great town to raise kids. No GPS or other surveillance needed because, from what I hear at parties, everyone knows what everyone else's children are doing. It is a community where people take care of their own. The sense of caring is far greater than I ever found in the Big City.

Writing about my family....well, I have a private family. One just doesn't do THAT – air dirty laundry. However, today, for some reason, I feel compelled. I found a journal that I started but didn't continue 18 months ago. It was the start of our current journey. Perhaps the failure to continue that journal is why I started the blog.

August 6, 2006

The e-mail was a simple one. “Because of reduced lung function, Dr. Kidd ordered a chest x-ray. It showed a lump. He has ordered another test that will be done this week.” (Note that my parent’s e-mailed me this information….)

A lump on a chest x-ray. The benign sounding interpretation of my non-medical parents was like a stone dropping into still waters….disturbing what had been a smooth surface far from where it broke the surface.

The diagnostics continued. A CT scan was done – it showed that lump. A 2.7 cm non-calcified speculated mass in the left upper lobe with associated hilar lymphadenopathy. Non-specific pulmonary nodules scattered here and there. My partners tried to reassure me – it was all just “pulmonary snot.” Not the dreaded metastatic disease that I feared. It couldn’t be. My father is young. He had an odd smattering of medical problems. A cardiac arrhythmia that had required ablation and subsequently dissolved into a-fib. A complete cardiac evaluation several years prior had shown a preserved EF with clean coronary arteries. Yes, my father had a good heart, a strong heart that I expected to beat for the 90 plus years that both of his parents had lived. His sister is 89. He is only 69. He has that neuropathy that no-one could decipher. He is not a diabetic. Had that been the first rumbling of the under-tow? A paraneoplastic syndrome that was manifesting years before the cancer?

Dad was next sent to a pulmonologist to continue the evaluation. I was feeling frustrated. The path to diagnosis seemed to be taking forever, although I knew that this was the course that many of the patients coming to me took. Meet the pulmonologist, set up more tests (a PET scan). I could have facilitated the work – gotten the answer within a week instead of the evaluation that dragged into a nearly 3 week period. My partners reassured me that it wouldn’t make any difference. I knew that, the under-tow was lurking in those seemingly still waters, threatening to take away my father.

The PET scan was performed. As anticipated, that lump – that evil 2.7 cm spiculated lesion - lit up, as did that hilar node. However, the under tow was gaining strength. An L3 vertebral body had “intense metabolic activity, concerning for metastatic disease giving the above findings.” How could this be? My father was asymptomatic. How could this be? He had been a life long non-smoker, grown up in a house of life long non-smokers. This was not right. This was not fair. But how many times have I told my patients, wondering at some lot that they have been given, that “life has no guarantees; it is not fair?”

I was able to go to my parent’s town for my father’s visit with his medical oncologist. I didn’t tell him that I worked in the field, initially….that came out later. Dad’s oncologist was kind enough to ask if I agreed with the recommended regimen. I told him, “I am here as a daughter….I am too emotionally involved to make a recommendation.” I wonder what he sees when he looks at us. My father, a man of few words, with twitching feet because it hurts to sit on hard surfaces. My mother, palpably anxious, but hiding her tears. Me – a colleague trying not to be sucked under by the force that was growing about my family—smiling, making small talk about the burden of Medicare, wanting to ask him to take extra special care of this man who is my father, wanting to tell him that I expected no miracles – that I knew the power of the current and that there was only a trial and error, moving through regimens, hoping that this uncontrolled growth of cells would be polite enough to respond.

I know too well the journey that my family has begun. This is not the journey that we have chosen, but one we take out of necessity. At this point, there is no other path. I try not to tell my parents too much about this road. I know the path is not lit, that changes in direction can occur without warning. I want them to have hope, not realize that for too many, the path is far shorter than one anticipates. Part of me hates that Dad has to take chemo. He is asymptomatic now, but so often, chemo invokes symptoms.

I prepared my parents for what I thought would be the inevitable. The oncologist said those words "this is treatable but not curable." Our journey has been longer than anticipated. My father has been traveling his road for 19 months . The cancer initially responded to chemotherapy but Dad tolerated the chemo very poorly requiring transfusions of both blood and platelets. Now, he has been on a chemo holiday for about 8 months. At each look, the cancer has grown more. My partners tell me that Dad obviously has an "indolent cancer." I have seen these indolent cancers do their thing: they lurk and then suddenly wreak havoc. It doesn't always happen that way, but ..... my life is filled with a dread of the inevitable.

I do not know how much longer the journey will continue. We have already been blessed beyond expectations. However, despite the fact that there is only slow disease growth on scans, the cancer is taking it’s toll. My father is no longer active. My mother has learned to be active despite his inactivity of her life mate. They were high school sweethearts – I don’t think either one of them had a serious relationship outside of their coupling. I fear the gap that my father’s death will create. The best thing that I have done through this whole thing is be there to listen. The 2nd best thing: I gave them a dog. Emma is the clown that this serious situation needed.

Hug your hounds. Love your humans. Sorry for the word spew. It's been one of those weeks. And it is only Tuesday.