Mickey and I are in the large reception room in West Pavilion, Level 2, waiting for my appointment with Sunita Nasta, a specialist in Non-Hodgkins Lymphoma, Hematology, and Oncology. Three months ago, almost to the day, I ventured to the Perelman Center for Advanced Medicine and it was the best decision of my life, reinforced several times. Since I chose Penn Medicine, I have met several doctors and surgeons who validated my choice. Nice to have my research confirmed as a fine choice. But I knew that as soon as I was treated by Dr. Nasta.
Driving to the PCAM in Philadelphia, we allowed 2.5 hours to drive, and still arrived late. Turnpike construction, likely stimulus package funding, made lane merging a nightmare and the pace crippling. Then, another 15 minutes trying to find a parking space. How does anyone live in cities. Despite anxiety about being seen as a late arrival, the ambiance of the Perelman Center always calms. Perhaps that was part of the design capture, but this spacious center, dotted with upcycled art, feels reassuring. That's good because I am nervous just a bit because I think my lymph nodes are on the march, reminding me it is so much easier to be optimistic when things are going well.
Which leads me to a dear friend's story of a family friend in the OBX who succeeded in surviving cancer, only to have it return with a vengeance years later. This time her clock is ticking, and her otherwise open and optimistic approach has changed. All of which is a timely reminder to me. As this appointment approached, I noticed a mood shift. Not much gets me down, but the countdown to this visit came after a week's anxiety with weather and the llamas, followed by a postponed surgery.
Again, what grounded me was my girls. After the heat wave we survived, I looked at life on the farm as the new new. Now it's time to rethink the new new as I move forward, beating back cancer. Knowing that something in my life will keep me laughing, as my llamas do, or at least smiling through the difficult down times gives me courage and faith to move forward. See what I mean as you meet Maria, my talking llama.
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.
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.
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.
Mickey and I are in the large reception room in West Pavilion, Level 2, waiting for my appointment with Sunita Nasta, a specialist in Non-Hodgkins Lymphoma, Hematology, and Oncology. Three months ago, almost to the day, I ventured to the Perelman Center for Advanced Medicine and it was the best decision of my life, 
reinforced several times. Since I chose Penn Medicine, I have met several doctors and surgeons who validated my choice. Nice to have my research confirmed as a fine choice. But I knew that as soon as I was treated by Dr. Nasta.
Despite anxiety about being seen as a late arrival, the ambiance of the Perelman Center always calms. Perhaps that was part of the design capture, but this spacious center, dotted with upcycled art, feels reassuring. That's good because I am nervous just a bit because I think my lymph nodes are on the march, reminding me it is so much easier to be optimistic when things are going well.
OBX who succeeded in surviving cancer, only to have it return with a vengeance years later. This time her clock is ticking, and her otherwise open and optimistic approach has changed. All of which is a timely reminder to me. As this appointment approached, I noticed a mood shift. Not much gets me down, but the countdown to this visit came after a week's anxiety with weather and the llamas, followed by a postponed surgery.
Again, what grounded me was my girls. After the heat wave we survived, I looked at life on the farm as the new new. Now it's time to rethink the new new as I move forward, beating back cancer. Knowing that something in my life will keep me laughing, as my llamas do, or at least smiling through the difficult down times gives me courage and faith to move forward. See what I mean as you meet Maria, my talking llama.
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