As many know, in February of 2018 I was diagnosed with Well Differentiated Liposarcoma (grows slowly). My original surgery in April 2018 removed the primary tumor but didn’t remove all margins and in September 2018 I was diagnosed with Retroperitoneal Dedifferentiated Liposarcoma Cancer. Many have asked, “what is Sarcoma Cancer”? So, this update will begin with basic information.
Soft tissue sarcomas are an extremely rare malignancy accounting for only 1% of all the tumors in the adult population. It develops in the connective tissues: muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. Retroperitoneal Sarcomas occur in the retroperitoneum, which is the area behind the peritoneum (the lining of the abdominal space that covers the abdominal organs). Sarcomas are thought to arise due to genetic abnormalities and this dedifferentiation process occurs in up to 10% of the 1% of cases diagnosed. Tumors can also develop in limbs, lungs, brain or anywhere there is soft tissue. The mechanisms responsible for this progression are not completely understood.
At this time, Retroperitoneal Dedifferentiated Liposarcoma Cancer is not typically treated/cured with Chemo or radiation. I’ve been told it is considered a life-long diagnosis and due to recurrence, it is not considered to be in remission. Best treatment for now, is ongoing surgery to remove tumors. Unfortunately, due to its rarity, there are no Sarcoma Specialist Teams (Oncologist, Surgeons, or Surgery Radiologists, etc..) in Hawai`i, so I’ve made the necessary transition to MD Anderson Sarcoma Cancer Center in Houston, Texas for continued care every 3 months. It’s the best care and treatment place for me for now.
First and foremost, know that above all, who “I AM” is a strong woman, who is a fighter for others and myself. “I AM” a survivor of and through many seasons in my life and I believe Gods purpose for me is not yet complete. “I HAVE” a very loving and supportive Ohana (family), and wonderful and caring friends. “I HAVE” complete faith in Gods favor, grace, love, and plan for me. This is just another season in my life and I still have much to do.
Mahalo to those that have asked how I’m doing and how my health and care are going. I so appreciate you, your well wishes, thoughts, prayers, concerns, and supports. I apologize for not sharing updates more regularly, but it’s challenging sharing what and how the diagnosis of Retroperitoneal Dedifferentiated Liposarcoma Cancer impacts my day to day life without owning it as “my cancer” or “I have” when sharing.
“I BELIEVE” words and thoughts we speak, and others speak about us are powerful and critical in how we see and feel about ourselves and how others see us. “BELIEVE ME”, I’m not in denial, it’s just that this diagnosis is NOT how I choose to identify who “I AM” or what I choose to allow the priority in my life to be. “YES”, I truly have days (many) when I struggle against overwhelming words and thoughts of “what if”, “I’m so tired”, and “I really feel like crap” as I equally battle to embrace that my glass is ALWAYS at the very least, “HALF FULL” and “I AM” truly and abundantly BLESSED.
This past month, new nodules have been found in my arms, so I am returning to Houston on October 4, 2019 for biopsy’s, additional tests, and needed treatment/follow-up plan. Previous donations from friends, family, and people I’ve never met, has been a critical supportive lifeline for some of my medical and travel expenses from home (Hawai`i) to MD Anderson Sarcoma Cancer Center for the past 1 ½ years. Unfortunately, I am not the first nor will I be the last to face health decisions based on devastating expenses (and not being able to work regularly) necessary for ongoing care and treatment of not only Cancer but any illness. Costs for tests, specialists, airfare, lodging/meals, and ground transportation only (no surgery costs), averages $25,000. - $30,000. each visit (every 3 months). Medicare only helps with a percentage of some of the medical care and none of the travel expenses. I research and apply for whatever Cancer support funds that I’m eligible to apply for each trip, but have only received some support, for some travel needs, for some of my trips. Costs continue beyond what we can afford, and “I AM” needing your support.
I know these are challenging times financially for everyone, so I honestly and sincerely appreciate all amounts of support and blessings you’re able to give at www.gofundme.com/Deborahs-Blessings-for-Sarcoma-Cancer-Care I know that no matter the amount, all blessings are given with your Aloha and words can’t express the depth of my appreciation.
In addition to financial donations, UNITED AIRLINES miles donations are also appreciated. Miles can assist with my airfares and United Airlines works with MD Anderson and does not charge change fees when changes are necessary for extended care. This can be a huge savings.
Some have preferred to donate directly to me instead of my GO FUND ME account so that a fee is not deducted from the donation. If you prefer to donate to me directly or just want to communicate (I’d love the communication) with me, you can contact me at [email redacted] and I will share direct donation information.
With Blessings and Aloha, I send my sincere Mahalo (thank you) for your support and your continued prayers, positive thoughts, and energy. May God bless each one of you.
Please share this post with your network of friends, so it may extend my outreach.
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