Amanda Sullivan Amanda Johnson-Sullivan

First post: Aug 23, 2016 Latest post: May 9, 2018
I am a healthy, vibrant 38-year-old mother, wife, daughter, sister, aunt, cousin, niece, friend, colleague, teacher who feels great, except that I have a large mass growing in my chest.  I’m a person who never in a million years would have dreamt that last week an oncologist would tell me I have primary mediastinal B-cell non-Hodgkins lymphoma.  That’s my story and I can say that I am sure I am not alone in this and it breaks my heart.  Hearing you have cancer that doesn’t have a specific known cause or a reason is quite possibly in the lowest of the low of the trenches of things you want to be told.  It just sucks.  Fart noise.

That trench initially felt incredibly deep and we had some really sucky low moments.  While there are no doubt more lows to come, we are now filled with incredible hope.  I now know what I’m up against and have found an incredible oncology team at the U of M who told me on day 1 that their absolute goal and expectation was “to cure”—to make me completely free from this cancer—a goal that they think can be achieved in about 20 weeks.  My doctors are very optimistic that after six (or so) intensive rounds of chemotherapy it will be gone. No surgery, no radiation.  I can do this!

Were there signs? Yes, but they seemed insignificant to several different health care providers.  I share these details to remind us all how important it is to know our own health and advocate for ourselves and loved ones when something seems off.

In June, I started having trouble catching my breath, especially when exercising.  I went to a doctor who told me I had a rib out of place, probably from exercise, and to see a chiropractor.  I did and all seemed fine for a while.  I felt short of breath a few more times in June and early July, but nothing that even remotely slowed me down as I continued to work out five days a week.

Three weeks ago Tim and I went to Seattle for a long weekend. We had been walking all day and as we wound down the night I noticed a vein in my neck pulsing like crazy and swelling in my face.  I began thinking something was not right with my heart. I ran my hand down my chest and noticed a lump on my sternum in the exact same spot as the supposed rib thing had been.  It was not very big but it was there.  In the morning I woke up with my pulse racing and my vein protruding.  I showed Tim the lump and we both decided I should go to Urgent Care to get checked over.   In Urgent Care they said I had a little anxiety and a pulled muscle and not to worry even though my blood pressure and pulse were still racing.

We continued our trip and had a great time.  Still a little shortness of breath, but I kind of set it to the side.  Tim suggested I make a follow up appointment when we got home and I did.  I saw a different doctor on August 3 (the doctor from June was on vacation). My blood pressure and pulse were out of control.  I showed her the lump, which was getting bigger.  She told me I had anxiety and—again—a pulled muscle. I told her I DO NOT have anxiety (though I am sure it appeared that I did). I know my body and none of this is normal for me.  She told me to go home and drink tea.  Okay…. The weekend started and I began to panic a little. I knew something wasn’t right. 

Finally, on August 8, I saw a different doctor who at first said (again), that I likely had a swollen rib or muscle, but also ordered an x-ray to make sure and ease my worries. It came up abnormal and the rest has been a spiral from there.  The next morning they pinpointed a mass 10cmx4cm growing in my sternum which, after an excruciating week of tests and waiting, was later confirmed as a cancer called primary mediastinal B-cell non-Hodgkins lymphoma.  This is a relatively rare lymphoma that has no well-known cause and typically affects younger adults, mostly women.

Moving forward:

I am too happy and my life too full not to fight this and win.  And, truthfully I’m really not angry. I don’t feel mad. I feel sadness, confusion and my deepest feeling is fear.  But enough of that.  I can’t go there now. I just can’t.  My mom tells a story about me when I was little. I was in a dance show and had the entire thing perfectly memorized.  I was all smiles and ready to show the world what I’d learned. I got up on stage for the dance and another little girl kept getting in my way, in my space. I let it go for a few minutes, but it was messing me up.  After a few more minutes I looked around and gave her a giant shove to get her out of my way.  She fell down but got back up and at that point moved over.  I don’t condone shoving kids and it wasn’t very nice of me but it makes me laugh because that’s kind of who I am.  I don’t let things get in my way.  I’ve always surrounded myself with amazing friends, coworkers, and of course my rock of a family to get me through.  I’m not a victim and will always find my way. I always have and this won’t be any different.  I’ll find my way…but I need all of you, my dearest friends and family to help guide me. 

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