Surviving three days of 100 degrees of heat with the llamas was a challenge; after days of hosing the girls, we installed 3 AC units and now it's all good. Life has returned to normal, but I am left with a reinvented sense of summer ~ a new new. Part of this deconstruction comes from a sense of feeling overwhelmed and just a bit exhausted. The heat is punishing.
But deja vu-esque, the new new returned in a very positive way. It happened as I sat in the Perelman Center for Advanced Medicine, listening to Sunita Nasta, MD, my NHL specialist. Dr. Nasta asked me if I would be willing to participate in an MRI study. Penn Medicine is engaged in a several-year study of lymphoma patients who have not yet undergone invasive treatment for their disease. Although the program would have no direct benefit to me, as it was explained, I agreed to participate. It is really about helping others, and here's where deja vu re-entered. I was told my lymph nodes had not grown sufficiently to be a participant in the study. My news about my blood values and tests was excellent. Not that's what I call a new new. Interesting how our lives as they move forward help us redefine and redirect what normal truly is.
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.
Yesterday my husband and I attended our first Leukemia and Lymphoma Society dinner meeting at Pocono Medical Center in East Stroudsburg. It was a wonderful way to spend a milestone birthday. We were immediately impressed with how immaculate the facility--spotless and shining--was. From the kind receptionist to our warm welcome from MaryAnn Chupella, MA, LPC (center), Senior Patient Services Manager of the ` (Eastern Pennsylvania Chapter, Lehigh Valley Branch), we were solidly inside our comfort zone. First impressions are everything and Cindy Wildrick,RN, BSN (left), who specializes in working with cancer patients and Lynn Steele Heller, LSW (right), a social worker in the Pocono Medical Health System made us feel at home. All 3 women exemplify the PMC mission: "to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families." Just being with them one evening began working the magic of the mission.
MaryAnn introduced our speaker, Kaoutar Tlemcani, MD, Hematology/Oncology. She was not what I was expecting, and I was delighted to have my expectation be so wrong. (don't ask). The topic fit my diagnosis: Non-Hodgkin Lymphoma, and the focus centered on understanding your disease and treatment options.
Never in my life have I ever wanted anything to do with science, and never more in my life have I wished I had paid better attention in all my science classes and had a science-oriented brain. I did not; I do not. Having made that caveat, I can tell you that most of Dr. Tlemcani's slide presentation was far beyond my layman's lexicon. Still, I discovered many things I had not yet researched, so the evening was a wonderful experience on many levels, for both my husband and me. I am grateful to the Lymphoma and Leukemia Society for the vast network of information they provided for us, even before the Dr. Tlemcani's program began.
In outline form, Understanding Lymphoma: General Concepts
Malignancy of whiter blood cells called Lymphocytes
The origin of lymphoma can occur in any of the above-mentioned regions, but it can travel via lymphocytes in blood and bone marrow. Anything in the blood can be released to other organs, occasioning instances of lymphoma in the bowel, for example. These cases are atypical cases of lymphoma, Dr. Tlemcani stressed, but lymphoma blood cells exist in the blood and can therefore be released anywhere. Lymphoma can have a leukemic phase which is not common but can occur.
There are several ways to diagnose NHL, but I learned from the 3 people in the post-dinner discussion that all of them, like me, had difficulty being diagnosed, and that all of them, like me, took nearly a year to reach a determination. Because lymphoma is a blood cancer, staging (determining the level of your cancer) is NOT the same as in "solid" cancers, so a Stage IV, incurable in solid cancers, is curable in lymphoma, depending on the type of lymphoma, and there are 30 distinct types of the disease.
To determine if you have NHL (or any kind of lymphoma), your first step is a CBC or Complete Blood Count test. This test will scan for organ function, LDH, hepatitis profile, and HIV testing. Then scans: CAT or PET. I had both, and the PET scan, which should be a determiner, was not "hot." (This brief soundless video shows the detection of a "hot spot.")
That led to the next diagnostic tool, one that I avoided for several months, an excisional lymph node biopsy, either a partial or total removal. I had a partial. Finally, a bone marrow test will determine staging and level. My disclaimer for this post is that I am paraphrasing Dr. Tlemenci's very excellent but very medical-specific jargon.
To fully understand your disease, you need to understand the basics about blood. NHL blood cell components consist of white cells which fight infections. According to MedicineNet.com:
Lymphocytes are a small white blood cell (leukocyte) that plays a large role in defending the body against disease.Lymphocytes are responsible for immune responses. There are two main types of lymphocytes: B cells and T cells. The B cells make antibodies that attack bacteria and toxins while the T cells attack body cells themselves when they have been taken over by viruses or have become cancerous. Lymphocytes secrete products (lymphokines) that modulate the functional activities of many other types of cells and are often present at sites of chronicinflammation.
Red cells are oxygen carriers and platelets stop bleeding. Based on blood work done, your disease course will be identified as indolent (my diagnosis and very lucky at that, I know), aggressive, and very aggressive. These prognoses are based on a compilation of factors known as prognostic scores. From experience I can tell you I felt I was thoroughly tested, and at times grew weary of the tests but they are necessary. From these tests, you get an IPI, or International Prognostic Index which identifies your survival risk as low, intermediate low, intermediate high, or high for lymphoma patients. For NHL patients like me with follicular lymphoma, from Dr. Tlemcani's PowerPoint, I learned you get a FLIPI, or Follicular Lymphoma International Prognostic Index based on a point system:
Based on 4 additional factors (I do not understand the abbreviations so I am not including them), you will get a low, intermediate, or high-risk rating.
I do not know my FLIPI score but it will the first point of inquiry when I meet with Dr. Sunita Nasta in July.
Dr. Tlemcani's slide show is not available online (we were given hard copy), but I found one on Slideshare's MD Specialclass that is user friendly and helped me understand my disease.
Even though Non-Hodgkin Follicular Lymphoma is the most indolent form, there are still risks that NHL could move to the brain and a lumbar puncture (spinal tap) is required and therapy is different for treatment, or NHL could move to other organs, so you are never totally safe at your diagnosis. Because you cannot cure Follicular NHL, you do not want to be too aggressive in treatment bacause of the toxicity of the treatment.
Treatment options for NHL vary, and as one of the panel members stated, if you have to have something, Follicular NHL is the best thing to have because there are so many new treatment options that continue to emerge. The last 5 years has seen many new options approved, and the better use of some existing therapies, newly combined, or in geek tech language, a mashup, much like Web 3.0. These "newer" treatments include:
Rituximab
Bexxar
Zealin
Ritoxin
Another newer drug, Bendamustine, is approved as a singular agent for follicular lymphoma, and some studies exist for Retoxin. Bendamustine is superior to CHOP therapy. Nausea comes from Bendustine; treatment is 2 days every 28 days for indolent lymphoma as a first client option.
Autologous STEM Transplant - not primary first client treatment; it is used only in aggressive lymphoma. You give the patient a high dosage chemo after harvesting autologous (patient's own) STEM cells, then use high dosage chemo, then take the salvaged STEM cells and infuse them back into the patient's body. Same process can come from a donor (allogenic) match (sibling). Allogenic transplants not after 55; autologous may be done for patients into their 70s.
Clinical Trials: Patients whose bodies have become immune to treatments or have few options left are good candidates for clinical trials.
Phase 1: Those patients who opt for Phase 1 trials are true heroes, because they are the first human subjects to use the drug(s). The goal is to determine and establish safety and patients with rare cancers are often Phase 1 testers. These people test the drug for market. If there is nothing else to offer, then Phase 1 is an option, better than creating a new approach. Phase 1 determines if the chemo suite can move to Phase 2.
Phase 2 establishes dose and efficacy of drug: best dose, best result for patients.
Phase 3: compares the new drug at previously established optimal does to a well-established standard of care. The new drug goes head-to-head against an established protocol. Blind studies on all 3 phases.
Overall, if you have Non-Hodgkin Follicular Lymphoma, detected early, you are in a "wait and watch" pattern. You do not want to be too aggressive in treatment because of toxicity of treatment and because you cannot cure NHL Follicular Lymphoma.
One of the best parts of the evening was the panel discussion with 3 lymphoma patients, each with a different type of the disease. From them I learned, unlearned, and re-learned:
Watch and wait; your body can become immune to treatment, so don't rush to treatment (from the man who had the same type of lymphoma as I).
The best thing you can do is learn, because it takes the fear away.
Live each day as fully as you can.
Laugh often.
Lymphoma can migrate.
Drink green tea not coffee.
Find and drink Essiac, a holistic detoxing tea found in most health food stores.
Chlorescence is a gentle detox, and it is good to detox your body, because it is toxic.
Keep a positive attitude.
Remain active.
Check out acor.org and its daily digest feature.
Join a Light the Night Team for the October Walk at Northampton CC.
Don't let your disease dictate, but you do need to replenish yourself.
Listen to your body.
Find the new normal, your new new.
Give yourself permission to sleep 8 hours...good quality sleep and take a nap.
The italicized items are ones for my personal list. I think I'll make a refrigerator list, maybe magnetize it, and begin a daily reminder list so I unlearn some of my behaviors. Over the years, I've know people who have joined support groups, and I always thought, not me. But after yesterday's dinner meeting and panel discussion, I intend to be present and participating every 3rd Tuesday at 6 PM. It's all good.
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.
Surviving three days of 100 degrees of heat with the llamas was a challenge; after days of hosing the girls, we installed 3 AC units and now it's all good. Life has returned to normal, but I am left with a reinvented sense of summer ~ a new new. Part of this deconstruction comes from a sense of feeling overwhelmed and just a bit exhausted. The heat is punishing.
Nasta, MD, my NHL specialist. Dr. Nasta asked me if I would be willing to participate in an MRI study. Penn Medicine is engaged in a several-year study of lymphoma patients who have not yet undergone invasive treatment for their disease. Although the program would have no direct benefit to me, as it was explained, I agreed to participate. It is really about helping others, and here's where deja vu re-entered. I was told my lymph nodes had not grown sufficiently to be a participant in the study. My news about my blood values and tests was excellent. Not that's what I call a new new. Interesting how our lives as they move forward help us redefine and redirect what normal truly is.
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