Jul 19, 2017 Latest post:
May 27, 2018
Sometimes as you journey through life and you think you know what is beyond the next curve, and up the road .... life sends you on a path that you did not expect. Life has now sent my family and I on just such a path. This is not a journey I would have wanted, nor is it a journey that is easily won. I am, however, a strong woman who doesn't know how to give up, and who doesn't know the meaning of defeat. If it is a fight cancer wants, it is a fight it will get.
Life changed drastically for me (although I didn't know it at the time) on June 20. Suddenly that morning at work I wasn't able to put my glasses on my face! I take my glasses on and off numerous times throughout the day, but that morning, they slid down my left side of my face and I realized I didn't actually hook my glasses behind my left ear. It happened again that morning and I thought "how odd." As I left for work, I threw my purse on my left shoulder and again thought, "How odd, I don't remember taking things out of my purse," because it felt so light on my left shoulder. When it slipped down to my hand I could feel the weight ... again, how odd! As I got in my car and drove home, I kept feeling for the seat belt because I couldn't feel it crossing my left shoulder ... again I thought, "how odd."
I got back to work, talked to my staff about how strange all of this was. My co-worker Celeste, worried I was having a stroke, asked me to smile and stick out my tongue. I passed her stroke test! When I got home from work, I told my husband, Scott, about these strange things. He was immediately worried and told me to see a doctor the next day. I promised that if these strange things persisted I would do that. That evening, as I laid on my left side in bed, I could not feel the pillow on my face ... that kind of freaked me out! My brain had a hard time registering the pillow, knowing it was there, but not being able to feel it .
The following morning everything from the day before was still happening, I was concerned and made a call to the Montevideo Clinic. I was able to see a doctor that day. He did some cursory tests, which apparently I flunked, left the room, came back in and said I had an MRI appointment that evening at 6:30 p.m. Apparently they had problems with the machine that day, and for some reason the staff would still be there that evening. By the time I was home from work, they had asked if I would come in at 6 p.m. instead, which I did. The MRI to me was insignificant, the only problem was getting an IV into me to do the contrast.
Pretty quickly the following morning the doctor called me to tell me what he and the Willmar neurologist thought was going on. Before I tell you about that, I have to tell you all about a major secret in my life ... one that very few people know about. I was diagnosed with MS in 1993 after losing vision in my right eye. I have been blessed that I have had only some minor side affects of this disease for the last 24 years. Now back to Wednesday, June 21, they initially thought that what was happening was tumorfactive MS, a very rare condition where MS causes a tumor to grow in your brain. I began massive IV steroid treatments for 5 days in the Montevideo hospital. The nurses there were superb! We had some problems getting that IV/IV's in, but I've come to accept that in my life. Those massive IV steroids made me horrifically ill. I think every side affect you could get, I had, aside from the "roid rages" so to speak. I was miserable!
The following Tuesday, June 13, I had a second MRI to see if the steroids helped. This MRI was almost 2 hours long. I should have known something was really up, but I wasn't focused on that ... I was focused on work and a private tour I had to give at the Swensson Farm at 9 a.m., and another tour to the same group at the Lac qui Parle Mission at 1 p.m. I apologized to my tour group because I was still so sick from the steroids, and they only had me at about 50% capacity.
The next morning on Wednesday, Greg Waylander called to pretty bluntly tell me that this tumor had nothing to do with my MS ... it was a mass in my brain! My soul was crushed. A past Board President, Lee Hagemayer, just happened to walk into my office when I got the news. I felt so weak and insufficient, and I hated to have someone see me like that. But Lee, I thank you for being there at that very moment, your compassion to me is something I will always remember. I asked my staff to call my daughter, she hurried to my office, she called my son to come down, he left what he was dealing with, and we talked about this new diagnosis! We all met at my home at 3 p.m. to wait for my husband to come home from work, to tell him what the doctor had said. It was not a good day.
My appointment with my neurologist was the following week. In between, the Montevideo Clinic has a health portal for their patients. I read and reread, and I studied and googled all of the terms used in my radiology reports. It was then that I realized how bad things were. I prepared my husband on July 4 for exactly what the neurologist would tell me. I'm not sure he believed me, but the following morning, everything I knew he would confirm, he did confirm! My husband and I sat stoically through that appointment, and left holding hands. There were no tears.
Here is my diagnosis ... I have a metastases brain tumor on the right side of the brain. That fully explains why the entire left side of my face remains completely numb, down past my left shoulder. The reason I now have these symptoms is because the brain tumor has began to bleed. This, however, is not the bad news! This brain tumor is a secondary cancer. They know from the MRI that the primary cancer is one of two ... either renal (kidney) or melanoma! Neither is good ... neither brings a good outcome.
My next steps in life are to meet with a neurosurgeon and an oncologist. I have an appointment with the Mayo Clinic on Thursday, July 20 ... exactly one month after I experienced my first symptoms. I have many unknowns right now ... will they remove the brain tumor or not (the neurologist in Willmar said it is in a pretty easy place to remove) ... because the brain tumor has already metastasized, I know that the primary cancer is already very advanced and stage 4 (my diagnosis though). Here is the very strange thing ... I have not, and still do not have any symptoms of either melanoma or renal cancer. I know that having the brain tumor symptoms first, before symptoms of the primary cancer is pretty rare. I guess I wanted to be special!
So now I wait ... I still haven't had a good cry, I'm sure that will come one day. For now, I am trying to get so many things completed at work before I begin medical leave officially on July 20. I will be in the office until about noon on July 19, and Scott and I will leave for Rochester that afternoon when he gets off work. I do not know if I will or even can return to my position at the Chippewa County Historical Society. I began my 23rd year this month ... and this is a job that I still love, even after all of these years!
It has been very difficult and emotional to share my diagnosis with a variety of friends and family. Thank you all for your love and your hugs. Thank you to my sister Ivy, her husband Stan, and my nephew and Godson Patrick, for driving 7 hours to be here with me the day after my official diagnosis! To those who have offered to help in so many ways, I promise I will let you know once I come back from the Mayo Clinic!
Now I suppose, the entire world (or at least those who know me somewhat or very well) know what is happening with me and my family. I hate this because I try to keep my private life so private, hence why so few knew about my MS diagnosis over 20 years ago. During this difficult journey I ask that each of you hold my family tight while we understand if treatments or surgery are even viable for me. The thought of my family going through this terrifies me ... for them! I do not want to see them in pain, I don't want to see them have to face the hurt, and I do not want them to have to face a life without me ... but alas, this is the journey we could very well be on. I do ask, if possible, that each of you who are reading this, to become one of June's Warriors (for her families sake). If anyone is strong enough, tough enough, bullheaded enough, and well just ornery enough it is me ... I know with the strength of others I can put up one hell of a battle!
I will try to keep as much of my information up to date as possible ... or my daughter, Krystal, or son, Dustin, and there is even a remote possibility that my husband Scott may post.
Thank you all again for your love, support, and hugs (I love the hugs). May our journey on this unknown path bring us peace, love, and tons of hugs!