Yesterday, I participated in a teleseminar called, PTCL-Diagnosis & Treatment Update that was hosted by the Leukemia & Lymphoma Society. I've mentioned this before, but these seminars are always so informative and I learn something new each time.
The presenter was Dr. Julie M. Vose, Chief of Division of Oncology / Hematology at UNMC. She covered everything from initial symptoms for the various types and sub-types of T-cell lymphomas to treatment options and prognosis. I took lots of notes. Last week, I "sat in" on another teleseminar and Dr. Stephen Ansell as well as Dr. Julie Vose mentioned that one important test for all of us Lymphomaniacs to have frequently, is the LDH test. This blood test checks the levels of Lactate Dehydrogenaese, which shows tissue damage due to disease. I have a doctor's appointment this morning and I am going to ask my doctor about it. You can go to the LLS website at Program Infoto browse through their archived transcripts from programs that they've offered in the past, as well as to be informed of any up-coming events. Stay informed!
"Into the house where joy lives, happiness will gladly come." --Japanese Proverb
I wake up in the morning and listen to Rose’s puppy-dog snores and I smile. There she is, snuggled in bed with her new companion, seemingly content and settled into what will be her new world. Her life, as well as mine, will never be the same. No more hungry, demanding puppies for her to tend to, and nothing but a sweet and unconditionally loving girl for me to share my new life with. We are lucky.
Her one bad habit is her total obsession with squirrels. I was forewarned by her foster mom that she’d grown accustomed to chasing them in the back yard. A skill that her own dog taught her. I just smiled when she confessed this to me, and thought, “Oh, how cute.” And, it was. At first.
Every morning, whoever wakes up first, wakes the other. My method is of using a soothing voice and announcing, “Rosie, the birdies are chirping. They are saying, it’s time to wake up, Rose. A new day has begun.” She wags her tail in anticipation and showers me with kisses. Her M.O. on the other hand, can be quite risky if I don’t wake up right away. She prefers to climb onto me as if she is about to conquer Mt. Everest, and will coquettishly stretch one paw out at a time to touch my face. It is cute, but, like I said, can be dangerous.
I get dressed, snap on her leash, grab some poopy bags and out the door we go for our morning walk. Being an Irish Fox terrier mix (now I am convinced that the “other half” is Jack Russell), she is always on alert for anything that moves or makes a sound. Most of all, squirrels.
I love my neighborhood. One neighbor at the end of my street has a huge maple tree with several bird feeders dangling from it, and, not to leave any other creature out of the food bank, he chooses to feed the squirrels. He has a large terra cotta saucer placed on the ground that is chockfull of dried corn for the little darlings. If you detect just a little bit of sarcasm in my description of these rats in squirrel clothing, then you would be partially correct. Don’t get me wrong, I do not hate them nor do I wish to do them any harm, but you have to understand my fear of them stems from an eccentric uncle of mine.
When I was a child, my Uncle Mike found an orphaned baby squirrel in his back yard. He and my Aunt Henrietta nursed it back to health. They proudly named him, Fresh-ious. As kids, we initially thought it was so cool to have an aunt and uncle with such an unusual pet, but, as we discovered, the excitement would wear off soon enough, and by that time, there would be no turning back.
Fresh-ious enjoyed Nutter Butter Peanut Butter cookies, and, as most squirrels do, he had a penchant for nuts of any kind, including my aunt and uncle.
Holidays became a real drag. We’d go over to their house to visit, and Uncle Mike would cheerfully say, “Who wants to see Fresh-ious?” at which time, he would go down into his cellar, extract this rat with a furry tail from his cage, and carry him upstairs into the living room where we would all be seated in our holiday finest waiting for the show to begin. The star of the show would sit obediently on my uncle’s shoulders, flicking his little furry tail while being fed cookies or nuts. Then, came the moment we dreaded the most. Uncle Mike would hold out his open palm and at the same time ask, “Who would like some chocolate?” and there would be a few squirrel “pellets” sitting in his hand. UGH! He and my aunt would laugh and we’d give them our best hardy-har-hars as well, but in total disgust.
Not too soon afterwards, I learned about the perils of turning a wild animal into a house pet. One afternoon, I sat at the kitchen table enjoying a cup of tea and cookies with my aunt, when, as if on cue, Uncle Mike came upstairs from the cellar, carrying his precious squirrel. Aunt Henrietta gave one of her squeals of delight, and she stood up and asked if he’d like a cookie. Unfortunately, Fresh-ious was overly enthusiastic and didn’t wait for Uncle Mike to walk across the kitchen to her. Instead, he did what squirrels do best. He leapt off of my uncle’s shoulder and sprang across the room as if he were sailing through the air from tree-to-tree. His paw accidentally met with my aunt’s face and raked her cheek with his claws. The three of us were in shock. We cleaned her up and were glad that he missed her eye. That became the basis for my relationship with squirrels.
Call it Karma, full-circle, what have you, once again, my life is revolving around freakin’ squirrels. At first, herself would pull on the leash, and I’d try all of Cesar Milan, the Dog Whisperer’s techniques - shushing her while simultaneously giving her body a light tap to dispel the undesired behavior and to try to snap her back into reality, which. I found, did not work for her. She is a terrier through and through. But, this leash tugging could not continue. It was not conducive to my neuropathy. So, today, I told her that she was not allowed to pull, but she could sit and watch them from afar. It worked! And now, sometimes when I least expect it she will stop on a dime and sit on the sidewalk, ears perched out to the side in full-fledged Sister Bertrille-fashion, and enjoy watching them at play, while I bask in the glory of gratitude that I’ve finally discovered one way to keep us both happy. There is nothing worse than having a dog with obsessive compulsive disorder unless you can both learn to compromise the situation.
Even though we may have been diagnosed with cancer, we can still take the time to savor each moment. Like Rose.
Affirmation: I choose joy in my life.
To order your copy of Living La Vida (Lymphoma) for $5.99,
Heather Von St. James was diagnosed with Mesothelioma shortly after the birth of her daughter, Lily. Back in January, I featured a heart warming piece that Heather's husband, Cameron wrote about how he, as a caregiver, was there by her side. It truly was a great testament to what a great guy he is and how he and Heather managed to get through it all. Here is the link to his original story:
Now, check out this video that they put together to raise awareness for Mesothelioma. I am so happy that Heather is doing so well and that they are thriving and surviving! What a beautiful family and my wish for them is to keep on being the awesome advocates that they are! Please pass this story on to all of your social media contacts to spread the word on this awful disease. Lymphoma. Mesothelioma. Melanoma. It doesn't matter what the diagnosis is - It's all cancer and we are in this fight together!
Sending out a special heart-felt thanks to all of the men and women who have served and sacrificed their lives for the United States of America. You are our heroes! CLICK: Candace Glover sings the National Anthem
Somewhere Over The Rainbow is such a beautiful classic...here is one of my favorite versions, done by Israel "IZ" Kamakawiwoʻole...he transitioned way before his time but the end of the video shows the celebration of his life - an awesome tribute!
I've said it many times before -- getting kicked in the ass by cancer sucks BIG TIME! We can get caught up in our daily lives and forget to take time to love ourselves! If you don't love you, who else will? You need to focus on YOU! People think setting aside some "alone time" is a selfish act...NOPE! YOU ARE WORTH IT! So DO IT and remember YOU ARE LOVED!
A big shout out today for the Leukemia & Lymphoma Society in providing yet another awesome Patient Education webinar / teleseminar yesterday! Dr. Stephen M. Ansell, a Professor of Medicine from the Mayo Clinic in Rochester, MN was the keynote speaker. The topic was, Living With Slow-Growing Lymphoma and was most informative.
Dr. Ansell discussed the various treatment options for indolent lymphomas as well as types and sub-types. One of the best take-aways I got from the program was in regards to relapse...what options are there for when the dis-ease rears it's ugly head again.
I was so excited to get picked to ask Dr. Ansell a question, even more so considering how many other participants there were! I told him about the treatment that I was given and asked if the same drug combo could be used should a relapse occur and he said, "Yes." He also went on to talk about SPTCL and how rare it is (for the other participants) and that there are some new drugs on the forefront that are hopeful.
If you would like to read the transcripts from this presentation, wait at least a month before it gets posted on the site. In the meantime, you can have access to other seminars from the past few years by clicking on this link:
As a writer, one of the questions I get asked a lot is how I can keep up the pace of doing my daily blog. My answer is, "How can I not?" When I began blogging, my goal was, and still is, to inspire others. As cancer survivors, it is a daily struggle to get through each day sometimes. I want to give my followers a chance to click onto my blog and get a daily dose of inspiration...something to think about. My book sales have plateaued and I was brainstorming on marketing ideas as soon as I woke up this morning. The purpose behind Living La Vida (Lymphoma) was to help others. As I sat at my desk to prepare for the day ahead, I received an email from a lovely girl who brought me back down to earth....it's not about a marketing plan, the money, book sales! It's about REAL life. So, many thanks go out to Miss Clarissa today for your kind words: Ms. Sykes, First off I would like to thank you for writing this book because I don't have any sort of cancer or illness but my best friend did. She had Cystic Fibrosis, not cancer related but an illness that also needs a cure! My best friend had passed away two years ago, she was only fifteen. Your book gave me the curiosity to read about the life on an in and out patient. At first it was just a book that I had to look for, for a memoir in my AP English class. Then as I started to look more into your book I couldn't get myself unattached from it. Knowing what my best friend had gone through with her illness I somehow became apart of your book, remembering how I'd visit her at the hospital or making sure she took her medicine. You are a true example of someone living life to the fullest because being able to face the challenges in your life ESPECIALLY your illness. Just me with the flu I feel like everything in the world has gone to pieces but you! You are a magnificent woman! Thank you Ms. Sykes for writing this informative book, making understand what life is like with an illness, and helping me receive an accepting grade. Have a wonderful day! Love~ Jodi
We drink water every day, and if you don't you should! I promise not to stay up on my soapbox for too long on this subject, but we do need water to stay hydrated and to assist with the smooth running of our bodies. Here is something that I had never considered before - sip hot or cold water? Which is better for you? I'm a tea drinker but after reading Dr. Lorraine's blog post, I am going to do an experiment with water! Enjoy!
Author Michael Singer says spiritual growth can begin by silencing the negative thoughts in our minds. Watch as Michael shares a spiritual solution to use to regain inner peace when thoughts become distracting. A very insightful message...
I'd like to share a positive affirmation that my Reiki Master wrote for me when I was first diagnosed. I printed it out and it is taped to my computer monitor frame - I say it every morning when I turn on the puter and then every night when I shut it down:
Tell your body, mind, emotions and spirit to re-member the love that you are and the joy that you share with others -- that you continue to share with all of us. Align with and stay focused on the light of love, joy, inner-peace, vibrant health, vitality, abundant to overflowing shimmering radiant light surrounding you, clearing you, healing you, expanding in, around and through you --- YOU ARE THE LIGHT! Fill to overflowing with this knowingness for nothing else is true, nothing else exists. Breathe it in and SO IT IS!
Dr. Bayard L. Powell, M.D., Section Chief - Hematology & Oncology of Wake Forest Baptist Health discusses Non-Hodgkin Lymphoma and the risk factors, diagnosis, staging, treatment and prognosis. Thank you, Dr. Powell!
The Leukemia & Lymphoma Society offers patient education telephone / webinars on a regular basis. I have participated in them and they are always informative! There are two that are coming up soon and if you are interested, please RSVP by clicking on the links...stay informed!
I believe that this simple message is what life is all about...we are all connected by an invisible thread. We are one. There are no mistakes in life. If you are open in gratitude to those who are put along your path to assist you, or realize that you can assist them, then nothing but positivity can evolve! Isn't life grand?
Whilst surfing through the internet the other day, I discovered an awesome community of people on SupportGroup.com's Non-Hodgkin's Lymphoma forum! Not only have they been very welcoming, between all of their collective experience with this disease and research they've done, they offer a wealth of information! Check them out:
In 2009 when I was first diagnosed, as soon as I returned from the cancer center, I Googled SPTCL. The first website that popped up on my screen was the Every Patient's Advocate website which is written by Trisha Torrey. Here is one of my blog posts:
This news threw me into a tizzy...as positive an attitude as I try to maintain, her words opened up old wounds for me. I, too, suffer from PTSD this "bastard of a disease" and I could feel her emotions. But, like she says in this piece, "patient empowerment changes everything." When we were first diagnosed, we had the fear of the "unknowns." Now that we have walked that walk, we are more informed and better prepared.
I am asking that everyone please send out their prayers and support to Trisha and that all will be well...thanks, Lovies!
Neale Donald Walsch, author of Conversations With God, discusses the emotional aspects of fear. He talks about the fear of death, and that really hit me. When I was first diagnosed, I thought about death because that it what my doctors told me to "expect." I write about this in my book. Neale's message is up-lifting and how I try to live each and every day...enjoy! The love is there....
Good Morning! I am so excited about the Leukemia & Lymphoma Society's annual Light The Night Walk which will be held in November! I am assembling our Living La Vida Lymphoma team and gearing up to raise money and awareness for this awesome organization that has personally helped me tremendously. Please check out our team website and pass this on to others...I would greatly appreciate it! And, if you live in the area, sign up today to be a part of our team! I love you all...have a super day!