[Meredith R]

Abnormal is my norm

by Meredith R on Tue Apr 04, 2017 8:49 am

Hi Everyone.

The reason I say "abnormal is my norm" is because my whole journey thus far has not followed the trends doctors are used to seeing. First, I found a small, soft, dime-sized bump on the back of my head. Which I blew off. How many times have you found a bruise and think "I must have bumped myself"? Then, when it grew to the size of a half dollar in two weeks, I new it was time to see a doctor.

My GP blew it off too. He had me wait a week, then sent me to a dermatologist. The der­ma­tologist wanted to wait 6 weeks until a CT, but I started having pressure headaches that pushed outward inside my head and caused my hearing to be affected. Then 11 days after I turned 42, I went to the ER where I was told I had a brain tumor. Who knew a brain tumor could eat through your skull!

Visiting the neurologist was even an experience in abnormality. He said there was no way I should be having these types of symptoms because the tumor was lying on top of my brain and not inside of it. An MRI with dye answered his doubts. The tumor was pressing on my sagittal sinus vein. Then, he swore it was most likely a benign meningioma and, if it wasn't, he was sure it would be two other types of tumors. Wrong again!

During the removal of the walnut-sized brain tumor on February 29, 2016, the biopsy revealed it was entirely made up of cancerous plasma cells. I was labeled with a solitary bone plasma­cytoma. Luckily, further analysis of the tumor showed it was IgG kappa with no genetic ab­nor­malities. My bone marrow was negative, fat pad biopsy was negative, skeletal survey was negative, and all my bloodwork was normal except for my IgG being a little elevated.

Therefore, I started 5 weeks of radiation on the back of my skull. I lost my hair in a 6 inch diameter circle in the back of my head. So, now I am waiting on it to grow back. It is sparse and slow. At least I can hide it by putting my hair in a ponytail. But after 11 months, I sure wish I could do something else with my hair. I guess I should be thankful I am not completely bald.

Besides working on hair, I am trying to regain strength on my right side. They have no clue why, but I lost balance and strength on my right side and have postural tremors. I did not have a stroke. The only thing everyone seems to agree on (neurologist, radiation oncologist, and hematology oncologist) is that they think this will be my one and only tumor because everything seems to be "normal". Wrong again!

I just hit a year out from surgery and a skeletal survey on March 16, 2016 showed I have an osteolytic lesion in my left femur. I am a realist. I figured it would happen, just not this soon. I am so confused about what I should expect for treatment. I think my diagnosis will change to multiple myeloma, but I don't fit neatly into any of the categories. My bloodwork has moved slightly, but still in the normal range. I am abnormal!

[acventura]

Re: Abnormal is my norm

by acventura on Sat Dec 02, 2017 8:44 am

I find this so fascinating, and I appreciate your sharing. Best wishes for a new normal that is truly normal, and count blessings for a bountiful pony tail!