Mandy Will Beat Lymphoma!
In April 2016, my Sista-Cuz Mandy, a loving mother of 2 children and all around wonderful person, was diagnosed with Stage 4, Follicular Non-Hodgkin's Lymphoma. It involves her entire lymphatic system, bone marrow and her bones.
Needless to say, we were all blindsided by this life changing news. She had struggled sometime with a serious auto-immune, but this was the last thing anyone could have expected.
There is no better adjective to describe my cousin Mandy than KIND and GIVING. Despite leaving her career to raise a special needs child and volunteering in every aspect (even organizing class reunions and family reunions), she persevered and established herself as an amazing mother, loving friend, devoted and caring daughter, a committed and loving significant other, strong in her faith and someone so unbelievably kind and generous to all those in her life. She is the first to offer help and is always the last to ask for help.
Another immense part of her character is her STRENGTH and DETERMINATION. This is something that has shone brightly since her diagnosis. Despite heavy doses of chemo treatments and massive rounds of medications and sickness, she tries to continue with her day-to-day activities. Mandy has set her mind on prolonging her life and winning!
Mandy has always been a tough lady whom handles life by grabbing the bull by the horns type mentalility. But she has suddenly come up against something no one has a choice in nor can control: CANCER.
She has taking this news in a characteristically brave manner and dealt with many challenges throughout with her warped humorous fashion as you see above. Her positivity and fortitude will serve her well in the days, months and years to come as she faces a long road of chemo, scans, tests, surgeries, and treatments which will continue for atleast 2 years or more.
How Your Donations Will Be Used:
While they have medical coverage from her spouses company, there are many things that won’t be covered – missed work, extended oncology treatments, medication, care requirements, immunotherapy treatments, suppliments, insurance balances and who knows what else will come up. His medical plan also only covers so much, with the two of them left responsible for making up the difference. We want Mandy to be able to focus on what is important and not worry about mounting medical bills and financial stress. As many people know, a life shattering diagnosis like this does not come without cost - and there are some significant costs for treatments not covered by insurance.
Anyone who knows her knows she would (and has) given the shirt off her back to help family and friends. Family and friends are very important to her and kept close to her heart. She is a very loving person known for sacrificing herself and her own needs to help others.
She is going to kick cancer's butt with our prayers and support, and we are going to surround her as a community with all the positive vibes, love, banter, hugs and ALL the support we can!
Let’s fight this fight with Mandy and give her the best possible chance to beat this! Our world is a better, brighter place with her in it!
How You Can Help:
PLEASE consider helping, any amount helps immensely and is of great help to her journey! She needs to be able to get some relief and peace of mind from the mounting medical expenses.
Also help us by sharing, sharing, sharing! And if you personally know her, please mention it in your share so that her cause is taken seriously and not mistaken as an ad or spam.
Thank you so much. I know my cousin Mandy would not ask for such help. So we need to show her we are behind her and fighting with her. I am sure she will be ever so humbled and grateful for any and all help.
Seen the doctor. The lymphoma has not returned, within the lymphatic system anyhow. I don't know what the lump is and neither do they.
They are very concerned with my lungs. He said he looked at October's CAT himself and did not see the spots that have appeared. Some are pretty good sized and there are numerous tiny ones. They are in my upper lobes, both sides.
MAINTENANCE CHEMO HAS BEEN STOPPED FOR NOW.
If it is a lung infection or some of the other things that were mentioned, being immuno-compromised it could kill me taking the chemo.
I am being sent to the lung specialist there. They will decide whether to start with antibiotics or cut my chest open for a lung biopsy. He also mentioned auto-immunes like Sarcadosis. Unlikely lymphoma because of the pattern, but nothings definite. An unusual form of atypical tuberculosis (not contagious), or atypical pneumonia.
THEY DO NOT KNOW WHAT IT IS. He just knows it wasn't there in October and it is now.
So more to come. The lung specialist will be set up ASAP. I see the Oncologist in a month again to revisit all of this and decide whether chemo can continue.
So, there it is.
I return to the center Friday, May 5 to consult with the lung specialists and see what is next. So stay tuned!
Have a safe and blessed week friends and family and thanks for all the prayers. They are greatly appreciated!
And now you see I was dead serious about the Meme I made and posted. Seems befitting for this as well, so I am posting it again!
I had a wake-up call this past month. Well, there were multiple calls, each steering me further from the feeling of normalcy…and ultimately, more aware than ever that I am actually sick.
I hate admitting that. Saying that or typing those words make me feel like I’m giving in. I was told to try to keep life as normal as possible, but how can I do that when I already have “critically low” immunity and no antibodies to fight off the tiniest of infections?
Unlike most chemo patients, I have to receive immunoglobulin antibody infusions. Basically it's when plasma is taken from 10,000-50,000 donors, its put through a vigorous screening process and I get the end result. Antibodies I no longer have from childhood immunization to this year's flu strain.
There are side effects. Reddening of the skin around the injection site, itching, rash, and hives. Increased heart rate, hyper or hypotension, an increased body temperature, diarrhea, nausea, abdominal pain, vomiting, headache, fatigue, fever, and pain.
More serious side effects of immunoglobulin infusions include chest discomfort or pain, hepatitis, anaphylaxis, backache, aseptic meningitis, acute renal failure, hypokalemic nephropathy, pulmonary embolism, and transfusion related lung injury.
There is also a small chance that even given the precautions taken in preparing immunoglobulin preparations, an immunoglobulin infusion may pass a virus to its recipient. And it happened to me.
A few days after infusion I started passing thrombosis out of my sinus cavity behind my eyes and developed a very hard to treat infection. I had massive nose bleeds. This went on for almost 2 weeks. Oddly, I didn't feel sick. How can be be that sick to pass blood clots and don't even know you are sick??? No pressure, no nothing. It took major rounds of antibiotics and shots to even touch this infection and its still lingering.
So I’m stuck in this quarantine-limbo when just three weeks ago every nurse and doctor complimented me on my lab work, would say I don't look sick AND would tell me I don't even act like I have cancer.
I kid you not. “Your hemoglobin looks beautiful,” is something a real human being told me before the new year. I was thrilled! What does that really mean? Who cares! I’m killing the bloodwork game! I actually believed that all my fabulous numbers were going to make this a breeze. A quick bout with cancer and then poof, back to skipping and smiling through life.
I thought I had accepted everything that comes with this disease, but I realize now how naive that notion was. I now have come to realize, my life has forever been changed and I don't know my body anymore.
I realize now that I am sick. I’ve been so distracted with the pressure of staying positive that I didn’t allow myself to process how big this is. This isn’t the flu, this isn’t a stomach bug, and I’m not going to be able to be bright eyed and bushy tailed every day. A lot of this stems from the massive amount of guilt I feel as someone with a treatable form of cancer. How lucky am I?! I have something I can beat into remission (God willing) and I’m surrounded by love and support. How dare I not be happy and bright every day?!
Well, buds, I can’t. But don’t worry, I’m not feeling sorry for myself, or admitting defeat. I’m just digesting this new normal and I can’t fight this as the person I was months ago.
I’ll be okay. I GOT THIS. I see a challenge ahead, not a surrender.
And then there's this. The COST. Stage 4 patients and patients with Non Hodgkins have treatments that cost like no other.
My chemo runs $160,000.00 PER TREATMENT.
The IViG infusions are running at $45,000.00 PER TREATMENT.
The Rituximab is costing $65,000.00 PER TREATMENT.
I can't help but wonder how people can afford to fight cancer. I am blessed that they have found new things to use to fight Non Hodgkins with, because just a mere 10 years ago the mortality rate was 90%.
Jaw dropping is the fact I hit 1, 000, 000.00 (yes, you read that right, 1 million) in medical costs from April-December 2017. I am sure this year is going to be just as costly. And I have 5 years to go, IF I stay in remission.
If anyone can afford $5, $10 or even $20.00 to help offset the financial burden that my family is carrying we would be ever so grateful.
I am going to keep myself focused on the fight and enjoying the days ahead.
She is experiencing massive nausea and continues to battle through the side effects from chemo, such as hair loss and headaches.
We are waiting to hear when they want to start the antibody infusions to bring up her immune system that is severely weakened. The Cancer Center has stated it will be in early February.
Please continue to share Mandy's journey and let's rally behind her to show her she's not alone!
The more you share, the more her story gets out.
More updates soon! Thank you so much!
I also grew up with this amazing woman. All the thing that have been said about her being sweet., kind and always being the first to help are sooo true. Mandy I love you and if you need me I'm here for you girl. Your amazing and I'm praying for you and your beautiful family.we are all standing beside you, you a fighter and a winner so let's open a can of whip ass on this cancer. All my love, Cherry Sweatman