One of the hardest periods of my life began that January day in 1992, when Rob and I got the confirmed diagnosis of leukemia. My heart sank, weighed down by fear of what was ahead. But, encouraged by Rob’s oncologist, we began learning about drug protocols that would keep him stabilized, and the process for finding a non-related donor for a bone marrow transplant. The one thing we didn’t talk about at the time, which neither of us even thought about, was what kind of support we might need to get through it all…..
Rob’s support came from the very small circle of people he chose to tell about his condition…. His 3 closest friends, 2 colleagues at work, and his mother. We knew no one who had lived this nightmare…. Where else could we turn to to share our experiences and gain support? There was no internet, and hence, no on-line support groups, hospital-run support groups ran on schedules that didn’t fit our needs, and we knew no one who had lived this nightmare. We did the best we could with our close friends and family, but for the longest time I felt isolated.
My first ‘real’ support system came from Faith, someone who was also living my nightmare, as it turned out, and who lived close by. Her husband Dom and Rob met in Boston when they were both in the hospital for pre-transplant procedures, and discovered they lived in the same area of CT and were going to be in the hospital at the same time. The four of us got together in the early summer of 1993, becoming acquainted and realizing that we could support each other. When Dom and Rob entered the hospital, Faith and I sought each other out, comparing our days, what our husbands were going through, and how we were feeling about it all. Knowing that I had someone to talk with who really understood my situation helped make a difficult situation bearable. To this day, I know that if I ever need her support about this, she’s there for me.
What, then, does it take to provide emotional support to a patient or family member battling a blood cancer? What’s your story? Have you or a family member needed support through a time like this? If so, where did you find what you needed? What advice would you give someone else in need of emotional support while fighting a blood cancer?
Share your thoughts and help others make a blood cancer connection…..
Non-Hodgkin's lymphoma is a type of cancer that starts in the lymph system. The lymph system is part of the immune system. In this type of lymphoma, tumors start for a cell type called lymphocytes. They are a form of white blood cell.
In 2018, the estimated number of new Non-Hodgkin’s Lymphoma cases was 74,680 in the US. In the US, 71.4% of patients survive after 5 years or more of being diagnosed with Non-Hodgkin’s Lymphoma. This means out of 100 patients with Non-Hodgkin’s Lymphoma, about 71 patients have survived the disease for 5 years or more.
There are certain factors that increase the chances of having Non-Hodgkin’s lymphoma.
There are certain symptoms and signs associated with Non-Hodgkin's lymphoma. These include painless enlarged lymph nodes in the neck, underarms or groin, belly discomfort/swelling, pain in a patient’s trunk, shortness of breath, coughing, feeling tired all the time, higher body temperature, sweating at night, unplanned loss of weight.
There are certain tests that a doctor might use to see if a patient has non-Hodgkin's lymphoma.
The treatment options for Non-Hodgkin's lymphoma include the following:
“Cancer Stat Facts: Non-Hodgkin Lymphoma.” National Institutes of Health National Cancer Institute, 2019, https://seer.cancer.gov/statfacts/html/nhl.html
“Non-Hodgkin's lymphoma.” Mayo Foundation for Medical Education and Research, 2019.
Web links about Non-Hodgkin’s Lymphoma
Non-Hodgkin lymphoma https://medlineplus.gov/ency/article/000581.htm
Hodgkin’s Lymphoma is a disease of the lymph system. The lymph system is a part of the immune system. This disease is caused by irregular cells in the lymph system. The irregular cells do not grow like normal lymph cells.
In 2018, the estimated number of new Hodgkin’s Lymphoma cases was 8,500 in the US. In the US, 86.6% of patients survive after 5 years or more of being diagnosed with Hodgkin’s lymphoma. This means out of 100 patients with Hodgkin’s Lymphoma, about 87 patients have survived the disease for 5 years or more.
The things that raise the chances of having Hodgkin's lymphoma include:
Symptoms of Hodgkin’s Lymphoma include: swelling lymph nodes in the neck-groin or underarm, constant feeling of tiredness, increases in temperature, sweating at night, unplanned loss of weight, irritated and scratchy skin, effects of alcohol are more pronounced, and pain after alcohol consumption near lymph nodes.
Based on a patient’s personal/familial medical history, a doctor may conduct tests to establish if there is a diagnosis of Hodgkin's lymphoma.
“Cancer Stat Facts: Hodgkin Lymphoma.” National Institutes of Health National Cancer Institute, 2019, https://seer.cancer.gov/statfacts/html/hodg.html .
“Hodgkin's lymphoma (Hodgkin's disease).” Mayo Foundation for Medical Education
and Research, 2019.
Myeloma is a type of cancer that affects white blood cells. Specifically, it affects the plasma cells. Plasma cells create antibodies. These antibodies help a patient’s body find germs and fight off infection.
Myeloma occurs when unhealthy or cancer cells gather in bone marrow. These cancer cells overcrowd the normal blood cells. The cancer cells cannot make normal antibodies, instead they make irregular proteins. These irregular proteins can cause problems in the body.
In 2018, the estimated number of new myeloma cases of 30,770 in the US. In the US, 50.7% of patients survive after 5 Years or more of being diagnosed with myeloma. This means out of 100 patients with myeloma, about 50 patients have survived the disease for 5 years or more.
Factors that can increase your chances of having myeloma include:
The signs and symptoms myeloma can be different for every person. There may not be signs early on for patients with myeloma. When and if there are symptoms, a patient might experience bone aches, nausea, constipation, a loss of appetite/hunger, foggy thoughts or confusion, fatigue, repeated infections, patients may feel more thirsty than usual, patients may lose weight, legs may feel weak or numb.
There are several tests that can help diagnosis myeloma. Some of these tests may be conducted by your provider if they suspect Myeloma. Your doctor may find myeloma by coincidence with some routine tests. These tests include:
Before a transplant there are a few steps that are taken. Progenitor or Stem blood cells are collected. Chemotherapy is then used to kill off the sickly bone marrow cells. The healthy stem cells are then injected back into the body and help to recreate healthy bone marrow cells.
“Cancer Stat Facts: Myeloma.” National Institutes of Health National Cancer Institute, 2019, https://seer.cancer.gov/statfacts/html/mulmy.html
“Multiple-Myeloma.” Mayo Foundation for Medical Education and Research, 2019, www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378 .
Web links about Myleloma:
Patient education: Multiple myeloma symptoms, diagnosis, and staging (Beyond the Basics)
Plasma Cell Neoplasms (Including Multiple Myeloma)—Patient Version
What Is Multiple Myeloma?
SAVE THE DATE!
SUNDAY, MARCH 17TH | 4-7PM
Enjoy an evening of Bowling (with or without Brews, we'll leave that up to you!) on St. Patty's Day, Sunday, March 17th to benefit The Rob Branham Foundation.
136 New Britain Ave, Plainville, CT 06062
Tickets are $50 for adults and $40 for children 12 and under
Ticket price includes:
Event Sponsorships Available!
Partner with The Rob Branham Foundation for our annual St. Patrick's Day event, Bowl & Brews! For more information contact Carol Reilly.
Rob was raised in Stamford, and lived the last 17 years of his life in Simsbury. He was an avid runner and water skier, loved music, and collected antique radios and televisions. He began his broadcasting career in high school, and worked at leading radio and television stations throughout Connecticut. Rob’s honesty and integrity built him a reputation as a hard-working, well-respected salesman.
He proudly worked for 10 years as a volunteer reader for the blind on the Connecticut Radio Information System (CRIS). He also participated in various fundraisers sponsored by Fidelco, the Advertising Club of CT, and the Leukemia Society.
Rob’s international search for a non-related marrow donor sparked great interest in and compassion for other people stricken with leukemia who were not as fortunate to find donors. He made a pledge to himself that, after his recovery, he would actively work to recruit potential bone marrow donors, especially for minority populations.
Rob was diagnosed with leukemia in January 1992. After a year and a half search for a non-related donor, Rob underwent a bone marrow transplant at Brigham & Women’s Hospital in Boston. The transplant was successful, and on September 3, 1993, Rob went home to begin his recovery. During this time, unexpected complications arose, which eventually claimed Rob’s life on October 12, 1993, at the young age of 43.
Thanks to all of our sponsors, vendors, advertisers, dogs, and people who came out to Raise a Paw Against Leukemia on Sunday, September 30!
The weather was perfect, the pooches well behaved, and vendors’ products and services amazing! Our hosts - Renee DiNino, Erika Arias, and Steve Parker - were a special highlight for us. Whether you and your pooch ‘raised a paw’ on the dog challenge course, at the Pet Poses booth, by winning a drawing prize, or by visiting vendors, YOUR support helps The Rob Branham Foundation build awareness of the need to support CT families fighting blood cancers.
Hope to see you, your pooch and your posse next year at Raise a Paw Against Leukemia on Sunday, October 6, 2019 at Simsbury Meadows!
Join us on Sunday, September 30th to celebrate National Blood Cancer Awareness month at Raise A Paw Against Leukemia at Simsbury Meadows from 10am to 2pm.
In addition to our Vendor Fair, Food Trucks and Pet Portraits we will be hosting a Dog Walk and Challenge Course to benefit families fighting blood cancer right here in Connecticut.
The Dog Walk is a leisurely stroll around the perimeter of the Challenge Course, go at your own pace, go around as many times as you like!
Don't tucker your pooch out on the walk before they have a chance to test their agility on our 10 obstacle Challenge Course! Don't worry, it's just for fun and we will have volunteers on hand to show you the ropes and even snap a pic for you if you'd like!
Pre-Registration for the Dog Walk & Challenge Course is OPEN NOW
and just $15 per dog to participate!
challenge course obstacles
We would like to thank our Challenge Course Sponsors for their support