Thursday, September 28, 2017

Why avocado tastes like bacon and more from a 40 something survivor

Among other things, I've decided avocado tastes like bacon, hear me out people.  I looooooovvvvveeeee bacon, I mean serious love affair.  I eat bacon, real bacon, not that fake turkey bacon and ps, why should turkey EVER try to be bacon?  Bad plan.  Anyhow, I know I can't eat bacon all the time like I would like to.  I know avocado is good for me and one fine morning, I toasted my piece of wheat bread, spread on my avocado, added a little salt and pepper, bit into it.......y'all, I don't even know how it happened, I SWEAR it tastes like bacon to me.  I do have to close my eyes and think about it for a minute, but it's good, you should try it!



So, I'm two days away from my 43rd birthday.  That sounds REALLY old to me, I always think, how'd I get this old??  At the same time, I'm so thankful for age.  I remember shortly after I was diagnosed with breast cancer, I'd look at older women in their 70s/80s and I would envy them, a life well lived.  I wasn't sure I would ever get there myself, cancer really messes with your brain in every way possible.  I just wanted to be a grandma one day, who dreams about that??  I did and truth be told, I still do sometimes.  Although, I have to say, as a cancer survivor I think a lot of my filter has already disappeared anyhow.  I'm not quite the old lady who will say anything without a care in the world, but I'm not far from it either!

It's been 3 years since I celebrated my 40th birthday with a double mastectomy.  Gosh, I look back on pictures from that day and the days after and it's so surreal to me.  It's almost like I'm watching a movie of someone else's life.  I wonder how I had the strength and wisdom to feel so confident that everything would be ok, then I remember that I really didn't, I was scared to death but handed it over to God when I was too overwhelmed to think about it anymore.  I also wonder why in the word I took some of the selfies I did during that time and shared them on social media.....WOW.  Note to self, if you're ever on a morphine drip, you probably aren't using your best judgement (YES, that is an awesome pic, I'll put that on Facebook right now!)  This is my PSA, if you're on a morphine drip, hide your phone!

I remember getting diagnosed with cancer and thinking there was so much stuff I still wanted to do.  How had I wasted 39 years doing what I didn't really want to do?  How do any of us do that?  Truth is we all do it, but I'm still not sure why.  I guess we're all so arrogant that we think we have plenty of time.  Or, it's the 'it would take me years to write a book, finish college, etc."  This is a news flash to anyone who has that lofty goal of something you've always wanted to do but never could find the time to do it.  JUST START.  It's really simple.  So what if it takes you 3 years or 5 years to finish?  Because THE TIME WILL STILL PASS.  The only difference is, it will pass and you will have that goal completed, or you won't.  It's like losing weight, we all want to lose 20 lbs in 2 weeks when it took us 6 months to gain it.  Who cares if you only lose 1 lb/week by making small changes that are sustainable, in 5 months you'll be where you want to be.

I struggle every day with finding the balance of doing what I know I have to do and trying to find the time to do what I want to do.  And PS, I really AM writing that book, but it might take me years to finish and I'm ok with that :-)

It's probably time to re-evaluate some things in your life, relationships, goals.  Don't let those "suckers" in your life continue to suck the life out of you, there are some relationships that are meant to be set free.  You have to make a constant decision to surround yourself with joy, nobody else will do that for you.  Make plans, do things, share love, experience joy daily.  Tell a grandmother you long to be her one day.  Eat avocado and decide it's bacon.  Change one thing each week that you want to do different, or even one thing each month.  Time is finite, not endless, treat it that way.


Friday, March 18, 2016

A note of Thanks & INSPIRATION!

Thank you and all the great folks at Love is Louder than Cancer!!  What a blessing this organization is to our family. 

Joseph was diagnosed with a very rare bone lymphoma on August 8th 2014 at the age of 15. Treatment commenced immediately and continues until December 8th 2016 (over 2 years of treatment and daily chemo). 

Joseph's spirit and resolve has not faultered during these days of chemo, spinal taps, nausea, blood transfusions and hospital stays.  Over the last year Joseph has battled severe pancreatitis (and pancreas shut down), temporary diabetes, shingles and chicken pox and now, severe bone necrosis from the steroids. Again his strong spirit has carried us. 

He is supported by his 18 year old sister Anna and 13 year old brother Michael.

Joseph hopes to get back on the golf course and back on track at the high school where he is a junior. He enjoys sports and hopes to become a sports agent or announcer one day for ESPN. 

Again we truly appreciate the gifts from heaven your organization is providing. 

Love to you all,
Shawna

THANK YOU SO VERY MUCH for this note of  thanks, Shawna!  Prayers continue that Joseph will not allow this awful disease to break that of his strong spirit and aspirations!  Wishing your family blessings upon blessings...   

Friday, January 8, 2016

LILTC Community, Meet Vickie

My story actually starts back in 2001 when I was diagnosed with a spinal cord disorder.  Since 2001, I have had 7 spinal surgeries, more CT scans, myelograms, and tests you can imagine.  I was “unofficially” diagnosed with Spinal Multiple Sclerosis after a CT scan in 2006 showed several lesions on my cervical spinal cord.  In 2010, I underwent 2 surgeries – one was to remove my gallbladder that failed and was becoming gangrene; the second was to place a SCS (spinal cord stimulator) to help with the pain in my lumbar spine.  With the SCS placement, I am not allowed to have MRIs; otherwise, due to the magnetic nature of the SCS, I can explode in the MRI process.
Fast forward to October 2014 when I was diagnosed with 2 types of breast cancer.  My official diagnosis is IDC Stage IIA, Grade 3+, ER+/PR+, HER2,- BRCA1-/BRCA2,- Ki-67 (95%), Oncotype 18, 0/5 LN and DCIS aggressive Grade 3+.  On November 14, I had surgery with 5 lymph nodes biopsied.  On January 2015, I started 30 rounds, 6 weeks of radiation.  During week 4, I began to have complications with my rib cage and left lung.  Since then, I have had pneumonia which later resulted in the need for a lung biopsy.  The biopsy determined I had a pneumonia and radiation related condition known as BOOP (bronchiolitis obliterans organizing pneumonia).  I will always be prone to lung disease, pneumonia, pleurisy, broken ribs, heart problems, and LOTS of pain and fatigue due to the treatment.  I currently continue my active treatment with oral chemo-preventative medications.  I am scheduled to remain on the medication for at least ten years, maybe the rest of my life.
I am employed full time; however, I take time off when I am in too much pain or too tired.  I rarely take time off because 1) I don’t like missing work and staying home; and 2) I cannot afford to stay home. I am out of paid time off and sick leave which means when I need to take time off, I am unpaid.  If I am unpaid, I have to pay a portion of my medical benefits premium back to my agency.   It is difficult enough to have a life-threatening illness, but to have to pay your employer back for the health insurance provided by your employer, just causes so much stress and anxiety.  I also was told to reduce my stress by removing myself from a graduate program I was ¾ of the way through.  I may never finish it, it was a goal of mine years ago, but my health needs to be my priority.
My insurance was covering a good portion of my cancer care, but things have changed since insurance changed in July.  Many tests that my cancer clinic recommends are not covered by insurance, even with the cancer diagnosis.  I must come up with the extra to have the much needed tests that are recommended by my cancer clinic for the on-going care.  I also continue medical care with gastroenterology oncology, pulmonology, medical (hematology) oncology, integrated oncology which includes dietician, counseling, and medication management.  I have had to give up acupuncture to treat the pain, neuropathy and other cancer symptoms because of the cost.
My cancer team and neurology/neurosurgeon team advises MRIs be completed in order to monitor not only the cancer, but the spinal cord lesions/MS.  One thing, I currently have several CT scans a year, these come with a high risk of radiation exposure which is not recommended in place of a MRI.  In order to have MRIs, the neurosurgeon must surgically remove the SCS, a major surgery with a six week recovery.  Once that has been removed, my cancer and spinal condition can be monitored more closely and safely.
I am a single parent trying to make ends meet, but having difficulty meeting medical expense obligations.  My medical bills are piling up and I am worried about eventually being declined medical care if I have too many outstanding medical balances.  I cannot have contusing care to monitor the cancer for recurrence or the spinal cord lesions if I do not have the surgery to remove the SCS.  I, then, cannot have the MRIs that are recommended by all medical teams involved in my care and treatment.  Thank you for taking the time to read this and helping any way possible.
Diagnoses:
Invasive Ductal Carcinoma (IDC) and Ductal Carcinoma in situ (DCIS), Stage IIA, Grade 3+, ER+, PR+, HER2-, 0/5 nodes, BRCA1-/BRCA2-.

Vickie, our prayers will continue throughout the coming months, that our Lord will present a way for you to meet the costs of the tests necessary for your on-going care and monitoring. May 2016 bring you MANY, MANY unexpected blessings.  



Thursday, December 17, 2015

Merry Christmas Daniel!

"We really appreciate the blessing that the Love is Louder than Cancer foundation has blessed us with. Daniel has been hospitalized four times within this past year with complications from Medication and procedures from his diagnosis of PreB ALL leukemia. This has caused major financial strain on our family as we have missed work due to the hospital visits and stays. Daniel has an upbeat spirit and keeps us looking to God for all kinds of miracles. Your organization has been that for us as we have been praying for months for help with Christmas for Daniel and to have food on the table. His Medicaid ran out in October and I was hospitalized that same month as well. We have mounting hospital debt from both stays and I have been unable to return to work as of yet. Please keep our family in your prayers and we pray God's blessings on your generosity with this organization. 

Sincerely, Erica (Daniel's Mom)"

The folks here at the organization will INDEED be lifting your family up in prayer!
We wish you a VERY MERRY CHRISTMAS!   

Tuesday, December 1, 2015

Meet Sydney!

"My name is Kivon and my daughter's name is Sydney and we were recently diagnosed with a rare form of ovarian cancer, called Sertoli-Leydig cell tumor. It only effects about 0.05% of women that range from 13-35. She's only 6. These last three months have really been an eye opener!! We have been truly blessed throughout the whole experience! And we are so grateful! Her older sister hasn't taken it so well, but we have a really good support system at home. Unlike common cancers, we don't have a support group for our type, so our family as been amazing and so have the wonderful doctors at children's! Our oncologist is the best doctor at that hospital if you ask me. She ended up losing her ovary, which was the size of a softball. So I thank you all so much!"

We sincerely appreciate you having shared your story with us AND our community.  We believe that by sharing one another's stories, H O P E is offered to other families also fighting!  May you enjoy a CHRISTMAS filled with JOY!          

#sertolileydigcelltumor #ovariancancer #pediatriccancer #loveislouderthancancer 


Friday, November 20, 2015

Sweet Angel

"Hi thank you so much it helps in so many ways! My sons name is Angel he was diagnosed with leukemia on June 15th of this year he was only 4 months old. We went through the whole process of waiting to see if he had a bone marrow match we knew that was the cure for is cancer. The type of leukemia he as diagnosed with was jmml. It is a really really rare kind doctors say out of the whole world there have only been 15 cases of it. It was hard for my husband and I to know that our baby had cancer. Doctors said that we were going to tests his sister and brothers to see if they were a match it would be the best for angel. But only 1 out of every 4 sibling  are match. We were scared that none of them were a match. We are Hispanic and hardly any Hispanic donate so angel being on we thought we would never find a match. We tested his siblings and are blessed that both of his brothers were a match for him. We went with his older brother Luis who is 5. Luis was so excited to be able to help his brother not be sick anymore and for him to be home with him. We did transplant on the 19 of August. Luis was so excited and happy that this day he was going to give angel his blood to help him feel good! When Luis back for his bone marrow he did not cry he was excited and happy. When he came out from procedure and woke up he didn't cry or wasn't scared all he wanted to do was see his little brother his wish came true and he went and saw his brother. On the 18th of September we got the good news that there are no more cancerous cells and were discharged. We went home that day but a week later we were back in hospital he got an infection in his central line and we count out that we were going to have to remove his spleen we got all that token care of and now we are home and have 2 doctors appointments a week in Dallas witch is 2 hours from our house but we couldn't be more happier to be home. Again thank y'all so much." 

God Bless this family.  Luis, you're an AMAZING big brother for being so STRONG as to donate bone marrow to your baby brother!  Family, enjoy a wonderful Thanksgiving together at home!              


Tuesday, September 22, 2015

Meet another strong survivor, Trevor

"Trevor was diagnosed on July 4th with Hodgkin's lymphoma stage 3b . He has put up a good fight. He just finished his 4th round of chemo. The next one starts September 30th. He is a brave 13 year old. He will have 14 straight radiation treatments after chemo is finished. We are very hopeful that he will make a full recovery.

Let's all come together to pause for a moment today to pray for sweet Trevor and his family.  Thank you to everyone who donates to make our Wallets of Love program a success so that families like this who need us can reach out to help.