Dec 19, 2019 Latest post:
Dec 23, 2020
My sweet friend Jennifer Walker created this site so we could update family and friends in one centralized location. The updates will come from me (Denise) when I am able, and when I am not, Jennifer has kindly agreed to post them. Jennifer is a therapist by trade and will no doubt be more polished and politically correct than I am! :)
Here is some background on our stories:
Michael's story goes back about a year or so. At that time, I began noticing some minor changes in behavior. The first thing the kids and I noticed was that Mike started using grandiose hand gestures regularly when speaking. He is an introvert so this was something new. We really didn't think much of it at first and joked around about it (he didn't mind).
Also, Michael's last job ended in January and with me being the only one working, I was putting on the pressure for him to find a job--and FAST! I would come home from work each day and ask about his job search and more often than not, he had nothing to share. As you can imagine, this was EXTREMELY frustrating and stressful for me and I wasn't very nice in my reactions to his lack of effort.
By April our taxes were due and while Michael had always done them in the past (he is very smart and has an MBA concentrating in Finance-taxes are a breeze for him), this year he was dragging his feet on them. He ended up filing an extension and we eventually had a friend file our taxes in October. Michael was also starting to mix up words. He called his passport a "recipe"-- things like that. He also became increasingly subdued and quiet and often wouldn't be able to complete sentence patterns appropriately. At first I thought it was depression from being out of work. He agreed that this could be a concern and began seeing a therapist and started taking meds. However, we did not see any real improvement. I thought maybe he was REALLY depressed or maybe having a reaction to his meds. Also, in the October timeframe, I started noticing Mike had some facial weakness on the right side of his face. I started wondering if he had had a stroke (his father died from complications of a stroke and Mike has high blood pressure). I suggested he make an appointment with his doctor who then referred him to a neurologist.
The neurologist noticed the facial weakness and speech issues right away and ordered an MRI and neuropsychological testing. The MRI came back essentially normal which ruled out a tumor or stroke among other things. The neuropsychological testing took place in mid-November and took almost 6 hours. Michael came home saying it was "hard" and that is when I officially started to really worry. We received the test results the week of Thanksgiving and Mike had performed poorly on the test in many areas--most significantly in areas concerning memory/recall, attention and speech. In other areas he did quite well.
We had a follow up appointment with the neurologist on 12/9 and the diagnosis was Neurocognitive Disorder--Dementia.
Dementia encompasses a whole host of disorders so we don't know which one Mike has specifically yet. They are leaning towards Primary Progressive Aphasia but are not firm on that yet. The facial weakness is a mystery because it doesn't "fit" with everything else. We've had him tested for Lyme Disease (negative) and will ask about Autoimmune Encephalitis to see if that has been considered or is a possibility.
I have been asked what my reaction was when I heard this news. To be honest, my initial reaction was "This is Bullshit!" (pardon my language) I have a healthy, smart 53 year old husband-he cannot have dementia!! Also, at that time I didn't think he had a family history. However, I later learned that there is a family history. I imagine there will likely be genetic testing done as a result of this information. I also felt very guilty because my frustration level over the past year with him had been so high and I had said some unkind things along the way.
Mike is very quiet these days (even more so than usual). I am certain he is understandably depressed and his world has gotten small and lonely with him staying in the house most of the day. He worries about stumbling on his words when in a group so he tends to stay close to home or with a few close friends. He is still completing all daily activities, errands, bill paying, etc. For now we pray that the medication will keep things stable and that we can find some therapies that might help.
As many of you know, I lost one of my best friends to breast cancer in 2006. As a result of that experience, I started getting mammograms well before I was 40. Each one was normal and not once was I called back for a second look. I was told though that I had extremely dense breasts and would need to be diligent about self exams, mammograms, etc. because cancer is harder to detect in dense breasts. As an FYI only 10% of women have extremely dense breasts--and if you have them, they will tell you.
I went in for my 3D mammogram on 12/2. This was just routine and I didn't have any concerns. While getting ready for the test, the nurse who did my mammogram made the comment "Wow, your breasts are REALLY dense, even for someone with dense breasts"! I didn't know quite how to respond to that. "Thank you" didn't seem appropriate. So--me and my dense breasts prepared for my mammogram. Some women really find mammograms painful and awful. I do not. While it isn't my idea of a great time, they don't really bother me either. However, when they were doing the mammogram on my left breast I said "Ouch" out loud. My left breast was tender and the mammogram hurt when it never had before. I asked the nurse if that was concerning and she said "No--some people are just more sensitive on one side than the other." So, with that, we finished up and I was on my way.
Monday morning- 12/9-I went with Michael to his Neurology appointment and we got the official diagnosis of dementia. I was a puddle of tears and Mike was stoically strong per usual. After I pulled myself together, I drove myself the 10 minutes to work. I was making a pit stop in our cafe to get some breakfast on my way to my desk and I received a phone call telling me that I had "suspicious findings" on my mammogram. They told me I would need to come in for an ultrasound. If I am good at nothing else in this world, I am good at getting doctor's to see me quickly or "fit me in". I was able to get them to see me for an ultrasound at 2pm that day and then they did the biopsy immediately following it. I returned on Wednesday 12/11 to receive the diagnosis of Invasive Lobular Carcinoma (in my left breast).
I am asked what I thought when I heard this. Again...I thought "This REALLY is Bullshit!" If you don't like the word "Bullshit", you may want to stop reading. I don't curse that often, but our situation really is Bullshit and I am going to call it what it is. To say.. "This is Unfortunate" or "This is Bad News" just doesn't convey it well enough. So I'm going with Bullshit ...sorry Mom .
I met with the breast surgeon Dr. Nancy Crowley and my patient coordinator Leanne on Monday. My dear friend Tammy Barry came with me to take notes. Tammy is awesome in many ways, one being that she is detail oriented and not afraid to ask questions. Between Tammy and Leanne's notes along with Dr. Crowley's detailed description of my condition, I left feeling well prepared.
Dr. Crowley ordered genetic testing and a breast MRI to make sure my other breast was clear. She too commented on my extremely, extremely dense breasts and said if my breasts weren't dense we could just go with the mammogram, but she needed to make sure nothing was "hiding". I found myself longing for fatty breasts during this entire conversation....
I used my powers in appointment scheduling to get the genetic testing and MRI done 12/17 and 12/18. Now I wait for results which could take 5-12 days for all to come back. From there they will decide on my treatment plan which will require surgery in some capacity and either radiation or chemo depending on how the tests turn out. They believe my cancer was caught early and it is slow growing. These things are both promising. PLEASE ladies-get your mammograms!!
As a footnote, I have named my tumor "Tom" (I like the alliteration and I like giving names to things).
We truly appreciate the love, concern, prayers and kindness we have received as we begin our medical journeys.