i was diagnosed with an inoperable brain tumor at 21
This all started almost a year ago; I’d been living my day to day — working as a filmmaker in South Dakota, shooting with local artists in town, with a passion for healthy living, I began yoga and weightlifting and I mostly edited films, photos and wrote.
I started experiencing neck and back pain, excruciatingly burning into my right arm and leg; so much so my right arm would go numb/tingly and I was limping on my right leg. I couldn’t even lift a coffee pot on the right side because it felt so weak. I have a high pain tolerance, but this pain brought tears to my eyes. I felt like an old person, yet I’m only 21.
I cut out the heavy lifting, and I was still eating healthy-ish, but after 6 months the pain in my right side made no difference. I saw the chiropractor several times a week and physical therapists. My pain showed no improvement, so after 6 months my chiropractor requested I see a Spine Specialist to see if I had any herniated discs.
The Spine Specialist appointed me for an MRI of the neck.
11–26–2019: MR/PRI — MRI SPINE CERVICAL WITHOUT CONTRAST:
The day before Thanksgiving, I got a call from the doctor.
“You have a mass in your brain…. I’m sorry to have to tell you this over the holidays…..”
MASS: UNKNOWN ETIOLOGY: THE DOCTOR DISCOVERED THAT YOU HAVE A MASS. THE CAUSE IS NOT YET KNOWN.
YOU SHOULD SEEK MEDICAL ATTENTION IMMEDIATELY, EITHER HERE OR AT THE NEAREST EMERGENCY DEPARTMENT, IF ANY OF THE FOLLOWING OCCUR:
YOUR SYMPTOMS GET WORSE
YOU HAVE ANY OTHER PROBLEMS OR CONCERNS.
So I kept calling, trying to set up appointments, trying to talk to the original doctor who called me on the phone, telling me I have this brain mass — Still no callback, the inorganization of the medical industry had me pissed off for weeks.
I could not contact the original doctor from Sanford Neurology, who diagnosed me.
I got a lawyer involved.
I wasn’t very vocal about my tumor because not even I had the answers-but I posted some of my frustrations about the medical community and my brain mass on twitter. A few concerning friends reached out, and a few people said, “you’re faking it!”
It took weeks to see my own MRI photos; I called the clinic every day to speak with the doctor who diagnosed me — every time I called they said they would leave a message; I never got a call back — they forced me to wait weeks to set up an appointment, to sign a release form to see my brain from the MRI photos — because “technically Neurology owns these images”- even though 90% of my dad’s income goes to paying our health insurance each month.
Since I was being IGNORED by Western Medicine, unable to make an appointment to see my own MRI images or set up a BRAIN MRI — I took research into my own hands.
I was depressed, discouraged and bullied online for having this brain mass and no one was there to believe in me.
12–26–2019: MR/PR — MRI BRAIN WITH AND WITHOUT CONTRAST
NOVEMBER 26, 2019- MRI BACK DIAGNOSIS: Chronic Right-sided thoracic Back Pain, Cervicalgia, Cervical Radiculitis, Lumbar Radiculitis —
It wasn’t until I went to Mayo in February, where they officially diagnosed the mass as a Glioblastoma.
They have diagnosed me with a Glioblastoma, which is a malignant brain cancer tumor sitting on the brain stem in the back of my neck. When I went to the Mayo Clinic on February 6th, I was told that because of the cancer’s location and blood supply to the brain it is inoperable and that they will watch it and make me as comfortable as possible until I die.
SAVE RACHEL'S LIFE organized by Rachel Rich
My name is Rachel Rich. I was born in Minnesota and have been living in South Dakota now since I was 5 years old.I am…
Dr.Uhm said, “Because of the location of the brain stem tumor, we cannot perform a biopsy — but thankfully you are not having any symptoms from this tumor.”
“But what about this right-sided pain? That hasn’t gone away for over a year? How can you tell me I’m not having symptoms from this tumor if you can’t perform a biopsy?”
Dr. Uhm just continued to say that’s its probably nothing to worry about, the pain is most likely from working out (even though I stopped exercising all together at this point because of the pain getting WORSE)
.
I went home heartbroken; I have a glioblastoma brain tumor — I don’t even know what that means, but they’re telling me I’m not experiencing symptoms from this?
I have been diagnosed with a glioblastoma, which is a malignant brain cancer tumor sitting on the brain stem in the back of my neck. When I went to the Mayo Clinic on February 6th, I was told that because of the cancer’s location and blood supply to the brain it is inoperable and that they will watch it and make me as comfortable as possible until I die. I refused the idea that that was my only option, so I searched the country for a doctor who could help me. I finally found one in Hawaii who is giving me hope. She has a treatment that may shrink my tumor. This is my only chance at life. My situation is urgent. I recently had 3 seizures that affected my blood and heart function. I was rushed to the hospital. My life is in imminent danger and I need to start treatment immediately. My goal is to raise $20,000. This will be used to cover the cost of my medical treatment/medication for 6 months (+ or — depending on my recovery), airfare & transportation to my residence in Hawaii, room, board, and other necessary living expenses, such as food while I am there. Please, I am asking for donations no matter how small the amount you can give because it all adds up and means so much to me! I need to go now.
I refused the idea that Sanford and Mayo were just going to leave me to die. I had friends living in Hawaii that found me a naturopathic doctor. We spoke on the phone for hours and she gave me natural resources all over the world.
She became my only hope.
SAVE RACHEL'S LIFE organized by Rachel Rich
My name is Rachel Rich. I was born in Minnesota and have been living in South Dakota now since I was 5 years old.I am…
Glioblastoma
Glioblastoma (Mayo Clinic website definition)
Glioblastoma is an aggressive type of cancer that can occur in the brain or spinal cord. Glioblastoma forms from cells called astrocytes that support nerve cells.
Glioblastoma can occur at any age, but tends to occur more often in older adults. It can cause worsening headaches, nausea, vomiting and seizures.
Glioblastoma, also known as glioblastoma multiforme, can be very difficult to treat and a cure is often not possible. Treatments may slow progression of the cancer and reduce signs and symptoms.
Since Mayo Clinic did not follow with the chance in chemotherapy, targeted drug therapy, clinical trials, radiation therapy, surgery or ANTHING to remove the Glioma, I had NO CHOICE BUT TO LOOK ELSEWHERE FOR HELP — if none of the doctors in Western Medicine would help, I have to look into alternative treatments; that I will have in my next updates.
SAVE RACHEL'S LIFE organized by Rachel Rich
My name is Rachel Rich. I was born in Minnesota and have been living in South Dakota now since I was 5 years old.I am…
https://medium.com/@cinimist/i-was-diagnosed-with-an-inoperable-brain-tumor-at-age-21-fc97d06af6b6