If you would like to hear a Podcast Interview with Myself about my battle and Spirit Jump
SPIRIT JUMP IS A SMALL CHARITY RUN BY TWO YOUNG WOMEN BATTLING CANCER. AS WE HAVE NO SPONSORS, ALL OF OUR COSTS ARE PAID FOR DIRECTLY FROM DONATIONS. IN AN EFFORT TO RAISE FUNDS TO SUSTAIN SPIRIT JUMP WE HAVE DECIDED TO HOST A FUNDRAISING RAFFLE.
EVERY SUNDAY A NEW PRIZE WILL BE OFFERED. PLEASE BE SURE TO CHECK BACK EACH WEEK AND ENTER EACH RAFFLE, THERE ARE MANY WONDERFUL ITEMS TO COME INCLUDING: AIRLINE TICKETS, GRILLS, SNOW BOARDS, JEWELRY, ORIGINAL PAINTINGS, BLANKETS AND MUCH MUCH MORE.
This weeks raffle prize was donated by MOLLY LOU GIFTS a distinct, unique, stylish, timeless shop of fine personalized gifts.
For each donation of $1.00 you receive 1 raffle ticket for this weeks drawing. There is no limit to the number of tickets you can receive. This weeks raffle starts Sunday June 21 and ends Sunday June 28.
RAFFLE PRIZE
This weeks raffle prize has an approximate retail value of $65.00 and includes:
- Three Packages of Blank Hand-Stamped Note Cards (6 per package)
- One Package of Happy Birthday Note Cards (4 in set)
- One 50 Sheet Magnetic Notepad
- One $20.00 Gift Certificate to Molly Lou Gift's Online Store
Spirit Jump Raffle Official Rules:
No purchase necessary. For each donation of $1.00 made to Spirit Jump, donor will be assigned one(1) ticket for this week's raffle. If you do not choose to donate but would like a raffle ticket at no charge, send an email with your complete name, address and telephone number to spiritjumpraffle@aol.com. All donations or email entries must be received by Midnight EST on Sunday June 28, 2009. Winner will be selected among all donations/email entries received in a random drawing. Descriptions of prize listed above. Approximate retail value of prize $65.00. All prizes will be awarded. Void where prohibited. Sponsor: Spirit Jump www.spiritjump.com
Fellow Fighter Kairol Rosenthal
Life Beyond Treatment
By Kairol Rosenthal
I was diagnosed with cancer at 27. After treatment, I ditched my hospital gown and hit the road. Traveling from the Big Apple to the Bible Belt, I recorded one-on-one conversations with 25 young adult cancer survivors who confessed to me experiences they had never told anyone else.
I was surprised by how many patients said that the hardest part of their cancer experience was life after treatment. Here’s a snippet of my conversation with Geoff Luttrell, a twenty-something survivor interviewed in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.
“When you have cancer and you wake up every morning, man, you know what’s happening: chemo, scans, IVs, the whole protocol. Everything else just falls away. There’s no confusion. Life was perfectly clear on chemo. A lot of people recovering from cancer talk about trying to live life like there’s no tomorrow, but you have to work, you have to go grocery shopping, you can’t just walk around 24/7 thinking, I have to make the best of it because I could die in the next five minutes. It’s not realistic.”
Like Geoff, I wanted to be realistic about how to deal with the directionless fray my life had become after treatment. Through my own trial and error, and while talking to other patients for my book Everything Changes, I learned some lessons that made the transition back into daily life just it a bit easier.
After treatment, be kind to yourself. Take it slowly. You don’t have to dive back into life where you left off. In fact you can’t, because life has moved ahead since you were last in it. Step slowly into your life, taking time to learn about what you want from other people and from yourself.
The entire world will want to know how you’re doing. Create a standard yet honest reply – an elevator line, that will educate them about what you are facing, such as, “I’m glad that treatment is over, but it’s pretty common to feel fatigue for a while, so I’m still recovering.”
When I traveled to Alabama, I met Tracy, a 37-year-old breast cancer patient who said, “Some people think that after an experience like cancer, if you are not smiling and doing cartwheels every day, then you’re just sitting around and feeling sorry for yourself. I am grateful to be alive, but I have good days and bad days just like I did before cancer. I also believe you can’t help yourself if you deny that you have suffered.”
She’s right. Life after treatment is hard. Maybe you’re dealing with medical bills, adjusting to a missing a body part, or making sense of your work, love, or family life. Perhaps fear, anger, or sadness about your diagnosis or recurrence are smacking you in the face. Don’t pretend that everything is fine if it is not. Being real about how you feel helps relieve tension. Don’t worry - you won’t get stuck here forever. I’m living proof of this.
If you have gone through treatment, what was life like afterwards? What was the biggest challenge you faced and how did you deal with it? Are you surprised that so many people said life after treatment was the hardest part of cancer?
For candid stories, practical tips, and expert advice on 20 and 30-something cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. Visit my blog.
Have you met my Non-Profit Spirit Jump
Im sorry I haven't written for a while but I have been so busy and life has been great lately! As many of you know I started a non-profit organization with my good friend Stacy. Spirit Jump has been such a positive part of my life and I want to share it with you.
I started Spirit Jump in November 2008 when I was trying to think of ways to help others who are battling cancer. Donating money was not an option for me but I could connect people who want to give with those who are in need of support. This is how Spirit Jump was born!
Spirit Jump connects the gift giver with men, women and children who are facing cancer and other debilitating diseases. When you join Spirit Jump all you're asked to do is send a card or small gift when and if you can. Its that simple. With a tight economy many people are not able to give as much to charity as they use to but when you are part of Spirit Jump you don't need to send money to help. In fact a simple home made card is priceless when received by a person who is battling such a dreadful disease.
For those of you who have kids Spirit Jump is a great way to involve them in charity. When children who are facing cancer receive a card from another child that can make their day and lift their spirits.
If you are not a jumper and would like to join or learn more please email me at spiritjumper@spiritjump.com If you know someone who could use a Spirit Jump email us and we will give you all the information on how we can help.
We are also on Twitter @spiritjump
On Facebook: http://www.facebook.com/inbox/readmessage.php?t=1069667546422&f=1&e=-12#/group.php?gid=197520490523
RAFFLE
We are planning a big raffle as a way to raise money for Spirit Jump so that we can keep up with our rapid growth. In order to have the raffle we need some donations. Quilts, jewelry, gift certificates etc...would be greatly appreciated for our raffle. All donations are Tax Deductible AND we if you have a shop it will be showcased on our website, twitter and Facebook.
Email us if you can help spiritjumper@spiritjump.com
Fellow Fighter Destiny-Neurofibromatosis
“My daughter Destiny is 9 and she has Neurofibromatosis (Nf). All I do is tell her story and I spread awareness to whoever will listen. You would be surprised how many doctors and nurses that don't know what Nf is for instance here is my daughter's story.
Destiny was 10 months old when she was trying to walk. She took 2 or 3 steps and then she sat in the floor crying, there was nothing I could do to console her. Finally, after a while, I took her to the emergency room. While there they examined her and found that she had multiple fractures in her right leg and they saw the cafe au lait spots and said that they were bruises after she was misdiagnosed for child abuse.
Child Protective Services took her away and 2 days later she was seen by an orthopedic who diagnosed her with Nf. Her broken leg was tibial dysplasia and psuedoathrosis which is a congenital bone defect that sometimes occurs with NF. That's how I found out my daughter had Nf.
Destiny has had several surgeries to repair her leg but none of them helped and 2 years ago when she was 7 she had her foot amputated and she now wears a prosthetic leg as a result. She was also sent to a neurologist who found the tumor on her brain stem and the optic glioma on her left optic nerve. My daughter has to have a MRI every 6 months.
All I do is tell her story. I do it because I want the world to know what nf is. If the world knows there can be no more mistakes.
Destiny likes to read, draw, sing ,dance. She loves babies and video games and loves animals.
for all Destiny goes through she is a true inspiration to everyone. She may have Neurofibromatosis but that doesn't stop her from striving to be that best that she can be everyday and touching everyones life in the process.
Surviving Mesothelioma
Recently I was contacted by National Awareness Coordinator,Mesothelioma Cancer Center and asked if I could help spread awareness about this terrible cancer. Please take a minute to read this guest post and share it with friends and family.
Mesothelioma is a type of cancer that forms in the lining of organs. This type of cancer occurs most often in the lining of the lungs (pleural) but can also form in the linings of the stomach (peritoneal) and heart (pericardial) as well. The only known cause of mesothelioma is exposure to asbestos, a substance that was used widely throughout the 20th century in a number of industrial applications.
This type of cancer has a very low survival rate because mesothelioma symptoms lay dormant for 25 to 50 years after asbestos exposure. By the time the cancer is diagnosed it is usually too late for treatment to be effective. But, while the usual mesothelioma survival rate is less than one year from the time of diagnosis, cases of patients living past their predicted survival date are continuing to surface. With each survivor story that comes to light, current mesothelioma sufferers are gaining a little more hope about their future.
There have been a number of mesothelioma victims that have lived far beyond the typical one year survival period and a handful that have even been cured, with no trace of the cancer many years after treatment (though recurrence is always probable). This has perplexed many medical professionals as they experience difficulty in explaining why some mesothelioma patients survive and others do not.
Research shows one common thread – the immune system. Studies of those who have either survived or been cured of the disease reveal that most of these patients took part in some sort of treatment that improved their immune system. Some treatments incorporated clinical trials in immunology while others involved alternative therapies dealing with the immune system.
One case where this immune system theory proved true was with a man who was diagnosed with mesothelioma at age 58 (no name was given in the report*). He had a chest wall resection performed after he was diagnosed and has had no symptoms or recurrence since. His doctors think there was "moderate host inflammatory response" and that spontaneous regression may be an immune-mediated phenomenon" - in other words, his immune system played a role in his survival.
A number of mesothelioma cancer survivors have posted their stories on the Internet and have spoken to patients and their families with the hope of providing a brighter outlook for their future.
*Pilling, J.E., et al., Prolonged Survival Due to Spontaneous Regression and Surgical Excision of Malignant Mesothelioma, Ann Thorac Surg, 2007; 83: 314-5.
Fellow Fighter Kimberly Doyle-Eberhard
My Awakening – Kimberly Doyle-Eberhard
In July of 1998 I had my first daughter, Faith. I was a single mom but very determined that she and I were going to have the best of everything. I would work hard to give her everything I never got as a child. After her birth, I was well on my way until I hit a big, brick wall.
At my 6 week post partum visit the OB/Gyn informed me that my thyroid felt enlarged and referred me to a Endocrinologist. Rather than hesitate, I made an appointment quickly. My first appointment was the regular, blood work, ultrasound, etc. The physician told me that there were multiple goiters and he wanted to monitor my TSH level and do a needle biopsy. A few weeks went by and I went in for the biopsy. It felt like a hundred years waiting on the results. Good news, it was negative. So, the plan was to continue monitoring my TSH and do ultrasounds every six months.
We continued that plan until 2002. Late 2002 I had my normal follow up. I told the physician that it was starting to feel like I had something caught in my throat. We knew the largest goiter (golf ball size) had been growing, very slowly. So, we made the decision to go in and remove the entire thyroid. We scheduled surgery and in December 2002 I had my entire thyroid removed. I went in for my regular post-op visit on December 17, 2002 and my life was forever changed. My physician walked into the room as white as a ghost. Here, on my 29th birthday, he had to tell me that the pathology came back showing cancer. I sat in complete shock almost thinking he was joking. I kept waiting for him to say “just kidding”. Instead, he took his time explaining what our course of action was going to be. I was sitting in this room all alone thinking about my daughter. It felt like everything was closing in and I was on the verge of collapse. Then, something changed, my fight instinct took over and I decided this was not going to get the best of me. I had a daughter to raise and I was going to be around for her.
So, we scheduled internal radiation in January of 2003. I had to go off of my medications and begin a low iodine diet. Radiation for the thyroid is very different than any other. You take a radioactive pill as an in-patient. This pill make you, the patient, radioactive. You are put in a room that looks like quarantine and the nurses and doctors are only allowed limited contact. I was in the hospital for 2 days. Upon being released, I was not allowed around my daughter for almost 14 days. It is imperative that the radiation not be passed to pregnant women or children. Being away from my girl was harder than the actual diagnosis and treatment. I had never felt so alone in my life.
The next few years included blood tests every few weeks and Nuclear Thyroid Uptake Scans every six months. Each time, everything looked okay so we stayed on the regular course of treatment. Synthroid 200 mcg.
In March 2007 I had my second daughter, Grace. Throughout my pregnancy we carefully monitored my TSH and I never had to change my dose. We did have to put off my scan for 2006 due to the pregnancy.
In September 2007 I had to see a new doctor because we moved to Colorado. During my first new patient appointment we went through all of my history. I also had new blood work drawn. The bloods work came back showing elevated levels of thyroglubin. The doctor ordered and ultrasound. This was the first ultrasound I had since removing my thyroid. A few days later I received a call that the doctor wanted me to come in and discuss the results. At that appointment I was told that there was a mass in my throat and it was in an area that can’t be biopsied. We scheduled a Nuclear Thyroid Scan to see if this mass would uptake any radiation. We did the scan, got the results and thankfully there was no uptake. So, the advice of the physician was to get another ultrasound in six months.
We moved to west Virginia in May 2008. I immediately scheduled an appointment with an Endocrinologist. At my first appointment we did an ultrasound. I have to tell you, I was not pleased with this physician at all. He took literally one minute to do the ultrasound and then said, “I’ll see you in a year”. I left his office distressed. If the physicians in Colorado could see this mass, how is it gone? So, I have spent the last year contemplating what to do and hoping that this WV physician is right.
Rather than put my life on the line I have scheduled this years appointment at UVA in Virginia. I am taking all of the films from Colorado and all of my past medical records. I am certain we will do an ultrasound. I just have to pray that there hasn’t been any growth. If there has and I waited a year for this second opinion, I will be devastated. The appointment is June 3rd and I am praying that the mass is merely scar tissue and no a recurrence.
I thought I was living life before the cancer. But, in hind sight I see I wasn’t living, I was just breathing. Although cancer is not a mere medical condition, I feel blessed that it opened my eyes to see the wonder that is in front of me. I live each day now as if it were my last. I love deeper, harder and more unconditional. I appreciate things that I used to disregard. Most importantly, my relationship with my girls is key to my continued growth and strength. Now I just want to be able to open up and share my story so others can see that the “C” word doesn’t have to be a death sentence, it can be an awakening.
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