Lori's Myelofibrosis Journey

My name is Lori Lindauer, and I have always been healthy and able to work. I have spent my life working hard, and my husband and I have always provided for our family. Until November 2021.

It was a typical day, heading to work. I felt a sinus infection coming on, and my doctor had prescribed an antibiotic, Bactrim. While I was driving down the interstate, I took the Bactrim. Within minutes, I felt itchy, warm, sick, and definitely not feeling well. I had to get somewhere where I could collect myself. We went flying into a gas station. This is where I knew something was deathly wrong.There in that nasty gas station bathroom I knew my healthy life was about to change.

I told my sister Lisa to come on as we sprinted in that gross bathroom. With my head in that disgusting toilet vomiting profusely, I told Lisa to call 911. She had no clue where we were. She just moved here. Cathy was in the car and called for help! Within minutes, which seemed like hours, the ambulance was there. I was in anaphylaxic shock. They gave me an epi pin right away. Then my blood pressure dropped, and they had to give me adrenaline. I was rushed to the nearest hospital, where they ran a blood panel test. After an hour or so, I was feeling better and released. Ok... I got thru that, and I went on with my life. No more Bactrim for me!!!

Weeks later, it all started to change. My blood test came back abnormal. My platelets were low, and my red blood count was low. That's when I went thru procedure after procedure blood test after blood test. I was put on iron pills to build my blood back up. I had to have an iron transfusion. Finally, I was sent to an oncologist in Mt. Pleasant S.C.. At this point, nothing was helping. The Dr there ordered a bone marrow test, a full body pet scan. And then the waiting began.

After waiting for 2 weeks, the results were finally in. It was almost a year in, and finding out was bitter sweet. I was terrified to hear the "C" word. We had lost 2 brothers and our father and all 3 had some sort of cancer.

My life was forever changed on this day. My results and diagnosis are Myelofibrosis! What in the world is that? SHEW, dodged the "C" word! NOT!!! Myelofibrosis is a rare type of bone marrow cancer that disrupts the body's normal production of blood cells and leads to leukemia.

My treatment for mylofybrosis to save my life. I have to take a medication called Jakifi. This medication is used to treat certain bone marrow disorders (myelofibrosis, polycythemia vera). It works by blocking your body from producing substances called growth factors. Growth factors cause cells to grow, and 6 cause the blood cell and spleen problems found in these disorders. I see the Dr every 3 - 4 weeks. If my blood work isn't good, then I sit 4 hours getting blood transfusions. In a month, I will be hospitalized, and a 6 dose chemo regiment will be administered. I will lose my hair and my weight. Then, the transplant will begin, and I will have to stay for a week or 2 afterward.

The donor process. There are no donors in the donor bank that are a match. My 2 sisters are the candidates, and if they aren't a match, they will try my 2 boys. Lisa and my mom have to come from Ohio, and my sister Cathy lives here in South Carolina. When I get the match, I will then start the transplant part of my myelofibrosis journey.

I will be in the hospital for 4-5 weeks. 3 of which will be the chemo part, and the 2 weeks after will be post transplant.

After care. When I get home, I will need 24-hour home care for 100 days. It's going to be a long, hard journey. But with family and friends, I am 100% positive that I am going to beat this horrible, rare disease.

It was at this point that I realized that we are going to need help from our families, friends, and our community. Being off work for months and months fighting for my life and we not being able to work. I humbly ask you for help. For housing payments, utilities, transportation, food, medical bills, medication etc. I appreciate you all and your prayers!

THANK YOU

LORI LINDAUER

AND FAMILY