Marian Niemeyer

First post: Mar 5, 2020 Latest post: Mar 13, 2021

My story started in February 2003.  John's brother had just died in November of 2002 and we were going to Seattle in December for Christmas.  I felt a lump in  my breast in December and didn't think too much about it.  It could be a cyst or you know, something else.  I did finally make an appointment and go to my doctor and for a mammogram in February. That's when it was discovered. There were a lot of doctor appointments.  I had to have a mastectomy because there were two spots and the right breast had to go.  It was then a matter of deciding if I should also have the;l left one removed.  Oh decisions!  and hard ones they were.  Loading up at a salad bar and the left breast knocking the bun off the plate, well that was it - it had to go.  More decisions on reconstruction, etc.   About a month later, on March 14th,  I had my surgery and reconstruction.  That allowed us to repaint the walls in the house.   After all, Carissa would be graduating that spring, and I wouldn't be able to do it later.   Then healing and more scans and tests in preparation for chemotherapy.  It all went well.  i had the usual nausea and yucky tired feeling with the first four rounds of chemo (A&C), and the bone pain with the last four rounds of taxol - walked like a little old lady, but that was better than the nausea.  We got a group together for Race for the Cure on Mother's Day.  It was cold, windy, and rainy and we, Team Pansy, had a great time.  I'll never forget brushing my hair and a clump of it flew across the pavement.  I later had John buzz my head that night.  The decision to do it was the hardest, and then the initial look.  It didn't take long and I had adjusted.  I did wear a wig in public in those days.  At home I'd often be running around bald.  Tim would walk in the door, look around the corner and tell me to put my hair on, that he had friends coming in.  One time when I had pain in my legs he told me to chase him, that I couldn't, that I'd fall down.  He always kept it real and with a sense of humor.  I was done by August and my hair grew back in and life went on.  ...for almost 10 years.

In December of 2012 I went in for what I thought might be my last annual oncology visit.  I had lost about 40 or 50 pounds over the last year, feeling great. My nurse came in and asked where the other half of me was.  My oncologist came in and gave me a frowning look.  I'll never forget that!  I had my blood drawn that day and in a few days I got a call that my cancer marker was elevated and they wanted a redraw.  so I did and that one also came back elevated.  Then it was a PET scan and a bone biopsy, resulting in the diagnosis of recurring metastatic lobular breast cancer, the same as before.  What a lot of people don't understand is that when you are treated for metastic cancer, it's a matter of controlling it, managing it.  The first diagnosis they go after it hard, trying to obliterate it.  But once stage IV, there's no cure. The treatments arent' nearly as harsh.  I went through various treatments for five plus years with no work interruption and no hair loss.  It remained in my bones, even though it spread, but it is best managed when it stays within the bones.  The summer of 2018 was a changing point.  It became evident that it had spread past my bones.  There were signs it was in my abdomen.  I found out that lobular cancer acts very differently.  It doesn't form masses as much as it winds around things, like organs.  It was still somewhat under control, but things would become more interesting with scans, treatments, hair loss, and my job.  My job position was elimated that summer, a big blessing in disguise.  There were some turbulent and anxious times, but by November I found out I had been approved for social security disability.  Such relief.  John was able to get me on his insurance until he retired, and then I had to go to the marketplace- oh joy!  The last year has been frustrating.  I had side effects with neuropathy and fluid retention about a year ago.  The fluid retention was pretty bad by the time the chemo was not working well either, so that worked out well.  The neuropathy remains.  They put me on "chemo vacation" beginning in April of last year for 6 weeks.  After 6 weeks it had progressed, but... not greatly, so they gave me another 6 weeks.  I didn't make it though.  I had pains that mimicked gallbladder attacks in July.  I fooled quite a few doctors - emergency room, surgeon, and primary doctors. I had my gallbladder taken out, but it was cancer winding around my stomach area, not my gallbladder.  Those symptoms are still with me today.  I can't eat a lot at a time - not all bad, right.   I had a promising targeted chemo, but was allergic to it.  Other chemos have worked only briefly.   As a result my cancer marker has shown evidence that my cancer has progressed quite a bit.  I still feel pretty good overall and I thank God for that.  I don't know how many treatments they have left for me to try, but it's not many. I know my time on this earth is limited, and I deal with that every day.  I am also grateful for every day that I have, and treasure them.  It's a perspective a lot of people never get.  That is one of the greatest gifts something like cancer give you. 

I will post ongoing adventures and hope you will go on the journey with me.  I appreciate all the prayers and all the support you have given me.  I know you are with me!

With love,

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