She is my Sophisticated Lady, elegant, fine-boned, beautifully chiseled, and reserved. You might ask, which one. Fawn or white. (You guessed correctly if you chose the lady on the left, although the white llama is my soul mate.)
Almost timid; it runs in her bloodlines. Although she is a perfect weight, she is thinner than I would like, what animal people call a hard keeper. Because she will not spit off another llama at feeding time, I am her protector, her grain keeper, and I make sure she has her full measure. Because I hand feed her (the Spoiled Rotten Llamas plaque is so appropriate), each morning we share extra time together, facing first light as it moves slowly over our mountain.
There is a stillness as you watch the invisible made visible, light rising eerily behind a copse of trees, velvet muzzle on your hand, sounds from grain crunchers. In this shared time with one of God's elegant creatures, I ponder the day ahead. How can I make a text more relevant for my students. What about myself needs reinvention. Was my aunt's knee replacement a success. And I pray. "Lord, make me a blessing to someone today." (Jan Karon, At Home in Mitford)
Facing first light, I confront my fears, small as they are. Questions about the future progression of my disease, will it attack other organs, will it lead to leukemia, what are the first real symptoms I should look for, is there a cancer diet. Small things, really. But life fully lived, on my terms, always asks hard questions. Because I can ask them, I can face the answers, facing first light.
Two years ago, I joined the 365 DaysFlickr Challenge, largely because I was so impressed and influenced by shutterbugJennifer Hartman Jensen's blog, Everyday In A Photo. And because so many of my DEN PLN participated, I wanted to join them. The goal of the challenge is to see your world in a whole new way through a daily photo. Truth be told, I did see my world in a whole new way, enjoying the challenge to capture the moments in which I live. I saw the finite parts within the whole, looking at composition with a different lens. Stamens and pistils, water on a leaf's blade, a startled duck in flight from the pond, first light rising behind our mountain, a blue valley--I lived more intensely inside the photographic moments.
Then my dear friend JenniferDorman, who anchored the PA DEN blog, broke the news via her social networks that she was hired by Discovery Education (we saw that one coming, Jen), leaving a vast void to fill. Since I was the other blogger, an occasional poster, I tried to fill her footprint. Impossible, but slowly I found my niche, leaving 365 Days in permanent suspension. No regrets. Just exchanged one challenge for another.
Now life presents a different challenge, one I did not anticipate that feels a lot like 365 Days. Similar, but different. I am no longer taking a literal daily snapshot showing my world in a whole new way. But I am living a whole new way, relishing life moments with a new intensity for seeing, feeling, and being.
Quite honestly, I do not want to lose this mindset, fully living fully freighted inside the moments. It's a good thing. Life no longer looks like fast-speed forward. I'm not TiVoing my life, nor am I trying to fill more space in high definition resolution. I'm just living in the moment, and I suspect it is a lost art.
The simple version is good news indeed; I will live with, die with, but NOT die of my disease. But beyond a diagnosis, even a great one, understanding your disease is critical to the care you give yourself. So, what is NHL? To answer this question, I turn to my computer notes I took while my two NHL oncology specialists, Tahamtan Ahmadi, MD, andSunita Nasta, MD, discussed my disease.
Paraphrasing Dr. Ahmadi, an Oncology Fellow (specialist past residency) on NHL Follicular Lymphoma:
Lymphoma is a disease of the lymph nodes. There are two kinds of lymphoma: slow v. fast and/or low v. high. The high form kills but can be cured; the low grows slowly and people live with this disease, often with no treatment if they are not sick. But the low slow type of lymphoma cannot be cured; contained but not cured.
Within Follicular Lymphoma, Grade 2 is on the lower side. Grade 3 is a fast-growing cross-over and becomes more aggressive. Grade 2 disease may transform but will not change its grading.
Staging the disease includes identifying how many lymph nodes, size, and location.
Left side chin, bilateral is neck, lower cervical above the clavicle, lymph nodes in hilium around lungs, 2 more above the diaphragm; abdomen and pelvis a few more. No need to worry about the number of nodes. They are there and that's that. Don't fret.
Stage 3 is my diagnosis for staging. Under Stage 3 is A and B. So I am a 3A because I have multiple nodes and A because I exhibit no symptoms.
Total diagnosis: Follicular Lymphoma Grade 2 Stage 3A
Treatment options:
Treatment can be done and then not needed for a long time and then done again. So I could have something done in, for example, a year, and then again not until I am in my 80s (+/= 15 years).
I mention my total diagnosis for several reasons. There is little, if any, privacy left in today's digital world, but that would be a default reason. The real reason is that initially I was lost in a morass of understanding how cancer, and specifically NHL progresses from initial identification to a final staging. How do you get from the x-rays, CAT Scans and PET Scans, broncoscopy, mediastenoscopy, and bone marrow test to a total diagnosis. Along the way, I received bits and pieces, but it took a long and large array of diagnostic tests and surgeries and then specialists to put my pieces together. I wanted any reader of this post to understand the process, and the time involved in getting to a diagnosis, and most importantly, never to lose faith in the future.
From Dr. Sunita, I got the technical spiel, as she put it, and I asked her to water it down a bit and wait as my fingers caught up with her knowledge and insight.
NHL Follicular Lymphoma is the second most common NH diagnosed with 20,000 per year, attacking people age 55 + but may occurs in any age demographic.
Occurs in lymphocyte cells and B and T lymphocytes; B = early surveillance system and identifies infections; B types identify via binding proteins that give a chain of events that cause cells to multiply and better identify the cells a second time around.
This occurs within our genes and immortalization happens (I do not yet fully understand this concept, but with all the really amazingly intelligent science teachers in our building, I will know shortly).
Trans-location 1418 puts the antibody chain next to the immortalization BCL2, making a cell immortal, able to produce the lymphoma and these cells take a long time to manifest themselves. KEY is a long time before the disease manifests itself.
People live with this disease as any chronic disease but early treatment does not enhance a survival rate. No silver bullet. Treatment = wait until volume of disease warrants treatment.
NHL is not tougher to treat later and is in fact responsive. Likely to get into complete remission just as easily and first remission is the longest = why we wait.
Treatment:
Lab tests Balance between monitoring and risks of monitoring Scan every 6 months; be seen by oncologist specialists every 3 months Possible treatment within the year.
For family and friends who may read this post, the last line about possible treatment within the year is predicated on the fact that my lymph nodes have been growing, albeit slowly, in the last 6 months, suggesting that thay have already been there for that long time growing spell, and are now moving more actively. I have been really fortunate in even finding I have NHL, which was really a serendipitous finding, since doctors were looking for something else, much worse.
What I have learned is that wait and watch is what you do with my NHL diagnosis. Are there potential problems for me down the road apiece, as we say in farm country? Of course. NHL can attack other organs (liver, kidneys, et. al.) or morph into other cancers. Now I understand why the Lymphoma and Leukemia Society (our newest organizational charity to which we contribute) are linked.
But, WILL that happen. No glass bowl, as Alison says on As Time Goes By, the British television series, but then again, I really would not want one. I am totally content with a wait and watch approach, just as I would not ever want to know the gender of my unborn child years ago. Some things are better left to happen as God intends. Nevertheless, I am still talking to God.
"Think of it as a disease, like diabetes, that you live with, die with, but not die of." Thus spoke Sunita Nasta, MD, Non-/Hodgkins Oncology Specialist, and my newest physician caregiver. Never was a diagnosis better received. In short, I got a life sentence, a long one (that's me on the left, walking the white llama). And it was a long time coming. At various times, I amped up my conversations with God and evaluated my life, dispassionately, to learn that by my standards I had lived well. Now the challenge might become dying well. Was I up to it.
And that's where the hand of God, the work of faith and prayer, serendipitous intervention, or just old-fashioned luck plays its hand. Call it as you see it, but for me, it was a Padre Pio miracle. Non-Hodgkins Lymphoma, Grade 2, Stage 3A.
When was the last time a physician asked you how you prefer to learn? Beginning with Tahamtan Ahmadi, MD, Oncolocy Fellow (past residency and now specializing), I was given the preference of medical discovery in my learning style. As a teacher, I totally understand the value of pitching to a learning modality, but was surprised to find that level of delivery in the medical field. Bravo!
"Would you like me to deliver my spiel, or would you prefer to ask me your questions first"? What a tag team! Being given choices counts with me, since I have grown up surrounded by specialty physicians in my neighborhood. Finding that same compasssion and concern, especially at a large facility in a larger city exceeded my expectations as Dr. Nasta greeted my husband and me as treatment sharers. Despite the expansiveness of the facility, I felt like I had returned to my childhood roots, where you could go next door and have tea, treatment, wonderful conversations, and confidence in your returning wellness.
Does your treatment facility have state-of-the art equipment? Why be referred to a cancer center that has the best diagnostic and treatment equipment when you can begin beating back cancer from the beginning by betting with the best.
What awards and accolades has your treatment center achieved? Is it wrong to want the best. Cancer care is a competitive industry and each strong facility has a piece of the market share. So, for me it comes down to ratings, rankings, research, and survivorship. And the doctors.
Are your doctors at the top of their specialty? Don't be a passenger in your life; be the bulldozer. Make your choices carefully, and then make sure the fit is good. Mine are, and in working toward longevity, that means everything.
Is your cancer center connected to a University Medical School? Field research and clinical trials are important to my decision-making. If need be, I will be a risk-taker. When life is the endgame, I want to be on the cutting edge, before the edge is cut. And should all else fail, I want to be positioned in a place that can look at advanced medicine alternatives.
Like so many people, my father was not so lucky. He did not get a life sentence, but we did manage to give him two years he might not have lived had I not done research at UPenn's biomedical library. Throughout my life, my father was my anchor, a strict but loving parent, someone I would forever miss. As I watched his life wane, I knew that should my time come when I would have to beat cancer back, I would learn from the choices he did not make.
Early in my childhood, I learned to speak to the pet puffin I adopted as an imaginary friend. And I talked to God. In later childhood, I sadly realized the truth about Puffin, and our conversations ended. But I continued to talk to God. Trouble with Him, however, was, unlike the puffins that played in my imagination, God did not answer.
Still, I continued my one-sided conversation. Years of Catholic school taught us that we could, much like the early television show, make a deal with God. I was naive enough to believe that God really needed me to exchange a week's worth of masses for the prayer flavor of the day or week. Sometimes I got what I wanted, but often I thought it was just serendipitous. Ultimately, I knew that God listens, but I was slower to realize that He answers us in ways we need to learn to understand.
God speaks in silence, and we need to learn to interpret his signs of conversation. A dear friend, colleague, and cancer survivor, Jennifer Piagesi, recently opened a whole new way of understanding God's answers. I was relating to her the really good news about my cancer diagnosis and treatment, and told her that as I entered the room in which I would be seen, the room number was 22. That's my lucky number, and the moment I saw it, I was childishly happy. Jumping for joy, almost. I knew I would be okay; I was just waiting for the doctors' confirmation. Jennifer reminded me that God was talking to me, telling me in advance I would be fine.
A blogger at heart, I am writing as my husband and I wait for my initial visit with Sunita Nasta, MD, who will be instrumental in determining protocols after collating a plethora of data. As an educator in a Professional Learning Community at our high school, I have learned the value of collecting data, and the importance of relevant data and its interpretation as it applies to students. More recently, I have employed data-driven decisions in managing my health care options.
Here's what we have learned. For each level of your journey, beginning when you may suspect, like me, you have cancer, you need to think specialist, not a general MD, or a general oncologist. The generalists may be starting people with whom you consult, but they should guide you to a specialist. The example I was given was simple. An oncologist may see 20 patients a day, but s/he will see all forms of cancers, whereas an oncology specialist may see 20 patients a day, but only in that specialty. So, getting to a specialist quickly is important.
The University of Pennsylvania has a long and well-established history as forerunners and innovators in medical science at all levels or medical care. William Pepper, Jr., MD (1843-1898), the third in the family line of physicians in the early history of the hospital, spearheaded major early development and expansion. A Laboratory of Hygiene, the University Library, University Museum, William Pepper Laboratory of Clinical Medicine, Veterinary School, Wharton School of Business and Commerce, School of Nursing, ad Wistar Institute of Anatomy and Biology, as well as several expansions of the hospital occurred under his spirited creation.
A milestone in radiology, including the world's first X-ray, produced here in 1890, as well as a leader in radiation oncology, cancer care and cures, and nursing education and excellence, the University of Pennsylvania Medical Health System is simply the best. That's why I am HERE. I want the best facility, the best physicians, the best equipment, the best treatment! It is critical in your diagnosis, treatment, and cancer care to make informed choices. Decide criteria for what constitutes best for you. That could include simply wanting the best diagnostician, surgeon, hematologist, radiologist, oncologist, but best includes a wide array of other emotional factors. My comfort zone one year ago centered in a small country hospital with the best compassionate care. Many physicians also practiced at a larger city hospital, but dedicated a smaller practice to my area of rural America, so I had the best of both worlds. Best may be a collaborative doctor who engages you in decision-marking (always my choice), or you may prefer a medical professional who directs your treatment with minimal input from you, perhaps making your journey just a bit less stressful. Best is individual, relative, and always your perception, so bet on your best.
Several seasons ago, I found the apparel and the company in the shape of the softest green hoodie. Not really sure what sealed the deal: the color, the look and feel, or the philosophy--on which the business is built and/or the message. Or just everything. But there you have it; I bought the sweatshirt (far too fine to sweat in, though) and I bought into the philosophy because it evoked everything I learned from my grandmother.
Like most women of her generation (she would be over 100 were she still alive, though she lives in my memory), life was not good. It was the worst 2 wars, the worst depression, the worst recession, and if you walk on the side of half-empty, it was nothing to brand. Yet for my grandmother, life was good. Grandmother used to tell me, when we picked giant blackberries at the summer cabin (yes, it was real wood and quite large logs at that), or when I sat at her side, amazed at her sewing savvy (a skill I did not absorb) that life was good. I heard it when I got sticky dough fingers learning how to make noodles from scratch. She told me every chance she had. Sweetie, (my pet name, so much easier than the one my Mother stuck me with when she could not make a decision), she would say, Life is what you make it, so make it good.
I can still hear her voice in my mind's eye, remember the years and years of spending summers with my grandparents, living for the lake summers. It was magical. I had a dog, a boat, a great lake, the woods, my books and bathing suits. I gained an unerring ability to make the simple fun. That was my grandfather's legacy, learned from hours of sitting with him from first light, fishing for trout, or eels, or whatever was in the waters. I learned patience, discipline, self-possession, and I knew that life was good because that was what I had promised to make it.
As I face a challenge that I leaned from the PET Scan results yesterday was a bit larger than I had anticipated, I still hear my grandmother's voice. I see the first light rising on the lake and through the mist I see my grandfather reaching for his line. I hand him a worm and wait. In the distance, I hear the stillness of time past reiterate that life is what you make it, so, Sweetie, make it good.
Like best friends and family who nurture us daily, books provide a source of inspiration, nourishment, and reinvention. Whether I turn to A Girl of the Limberlost, my favorite Gene Stratton-Porter morality novel for young readers, a legacy that has been passed through three generations of women in my family, or Jan Karon's At Home in Mitford and the Mitford novels, books provide solace and sources for normalizing cancer.
Not everyone develops the same degree of coping skills because everyone's cancer journey is different, predicated on variables of type, staging, environment, and stressors. Similarly, normal, like truth and all abstract nouns, depends on perception. Our definitions are individual, connotative, and exist in flux and relativity. Growing up in a quaint historic town, I lived in a funeral home around the corner from my playground, an equally historic cemetary. Pushing a baby carriage for my teddy bear, I blanketed my portable early 1950s radio and bear friends as my Mother and I strolled through Nisky Hill. Never, until I was much older, did I understand why, in those early days of emerging portable technology, people fled from us in the cemetery. Now this memory evokes nostalgic smiles, but today, as then, it was my normal.
Still, I have often mused about the ric-rac of life's fabric, and how we navigate sometimes erringly through what assumes the pattern of a cardiogram gone bad. Why do bad things happen to good people. The answer is profoundly simple for me and resides in a segment of Karon's At Home in Mitford.
Faith, by its very nature, must be tried.... What God does with our faith must be something like workouts. He sees to it that our faith gets pushed and pulled and stretched and pounded, taken to its limits, so its limits can expand.
Finding faith re-roots me in daily life. Like Jan Karon's quotation from her novels, "I have learned a lot about how to pray and how to deal with my passions and my enemies." While I do not identify people as enemies, for that is far too strong a word and I have come a long way, finding faith, re-discovering how, why, and when to pray, and for whom and what, has grown my spirituality. So have my best friends and family.
A first post is always a hard call, but I wanted to summarize my experience before I explore how I will beat back cancer, one strategy at a time, one day at a time. Please stay in touch; I hope to include guest bloggers and welcome posting your experiences. Cancer touches every family's life, and in this blog I hope we can share our stories and find a common place where together we can begin (and continue) beating back cancer.
Very few things in life are truly perfect, but the Fourth of July, 2009, was all that and more.
But like the fireworks that mark Independence Day, my life became a series of ground-level firework markers that reverberated for eight months, before burning themselves out. On July 5, my story began as I entered the hospital with a dangerous fever spike and coughing with pyrotechnic output remarkably like Mons Vesuvius. A CAT Scan and several x-rays later, I was released, only to reprise the visit in three days. That's when the real fireworks erupted. Five white lab coats entered to inform me that beyond pneumonia in both lungs, I should "get my life in order...arrange for a living will...and did I need counseling." White Lab Coats have a way speaking beyond the person, in an impersonal objectification whose subtext is your clock is ticking (did I mention I was alone).
A bronchoscopy, more tests than April's PSSAs, and a four-day hospital stay that was my best experience with compassionate care and cooking, and I was released with a life sentence, aka, nothing significantly wrong. My summer was iconic and idyllic; I looked out on 185 acres, my girls, and a wonderful life. For the duration of time from then to now, I was monitored. CAT Scans, PET Scans, and more hematology-sticking repeated at regular intervals led to a mediastinoscopy because my lymph nodes had grown. Subsequent to a diagnosis of Non-Hodgkin's Follicular Lymphona, Grade 2, a bone marrow test was administered as part of the staging for determining treatment protocols (would prefer surgery to another bone marrow test). The following video of a bone marrow biopsy is graphic, perhaps not for the fainthearted. If the video above is too graphic, try this animation.
Throughout my journey, I gained a newly-found respect for many aspects of my experience; the treatments and the people who administer them, but most of all, I respect bone marrow donors. Truly, I am not certain I could be that brave again.
My next step is a second opinion appointment at UPenn Hospital, and then a conference with my oncologist to determine appropriate treatment as a result of my staging tests. Since childhood, I have been an optimist, determined to live my life fully, on my own terms, accepting the responsibility for my informed decisions. Nothing has changed. I will survive, I will endure, and I will begin beating back cancer. The fight has already begun.
She is my Sophisticated Lady, elegant, fine-boned, beautifully chiseled, and reserved. You might ask, which one. Fawn or white. (You guessed correctly if you chose the lady on the left, although the white llama is my soul mate.)
There is a stillness as you watch the invisible made visible, light rising eerily behind a copse of trees, velvet muzzle on your hand, sounds from grain crunchers. In this shared time with one of God's elegant creatures, I ponder the day ahead. How can I make a text more relevant for my students. What about myself needs reinvention. Was my aunt's knee replacement a success. And I pray. "Lord, make me a blessing to someone today." (Jan Karon, At Home in Mitford)![Reblog this post [with Zemanta]](https://lh3.googleusercontent.com/blogger_img_proxy/AEn0k_uKxLyVmugv1FxAtXZt-ZuM7dvR_AvfMwXM-J479lTfu32IgU2P4kZ67IQrO9rR0Jlp2qjmK9n9wtcjd5JyCDD-zxCcKY013Xqd8E2-rkfnDJOHKKAButLRIc1L-5DcGZMeUXpIf0wgJehbn9RBT1g=s0-d)
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