Accepting a shitty diagnosis takes awhile. And that`s ok. It`s different for everyone.
For me I was somewhat prepared like I think most of us are by the time your bone marrow biopsy results come back. How could it NOT be systemic mastocytosis at that point. You`re prepared to hear the words, but not how they will make you feel.
When she came into the exam room, she sat at the computer and got right to it, pulling up my chart and saying that the results came back with what we both expected, I had systemic mastocytosis.
We discussed medication I was already on and the ones I would need to start, and the need for a medic alert bracelet.
At the end of the consult she said I also had high eosinophils and said she was still waiting for the rest of my genetic results to determine if Imatinib/Chemo would be an option for the eosinophilia and mastocytosis.
I didn’t care what we tried, I just wanted to stop having the attacks that had started happening frequently and severely.
A week or so later I called to ask her secretary something about a test I was going for and instead she put me through to my Dr. So I knew something was up lol.
She started by saying she had the rest of my results and was going to transfer my treatment to the cancer center.
I guess I expected there was a chance I would see an oncologist because they specialize in neoplasms. But I didn’t expect to be at the cancer center for some reason.
I only remember bits and pieces of what she said after that. Mainly “A malignant diagnosis can be beneficial because you can apply to the Luekemia and Lymphoma Society for financial assistance.”
It was just like some people say. As soon as the `c-word`is mentioned your brain diverts somewhere else and the rest of the conversation takes a back seat to your now racing thoughts.
It hasn’t fully sunk in yet. It`s been 2-3 months. But I`m making my way through the stages and I`m letting it happen naturally because I am making my way through, and that`s what matters.
It doesn`t consume every waking and sleeping thought like it did at first.
I`ve gone through denial (somehow still thinking it wasn`t permanent even though I knew it was).
I`ve gone through anger. At my doctors, family, friends etc.
I`ve gone through sadness. Feeling hopeless and alone and like everything was grim.
I’m not saying I don’t still have all those feelings here and there, but for the most part I think I`m moving into acceptance now and I just want to go back to my life more than anything.
But I know I can never go back to the life I had. And although I’ve managed for over ten years with this, things are a lot different now.
The main difference is I wasn’t “shocking” until recently.
It’s hard getting “used to” that. And the concept that it’s going to happen for the rest of your life, and can kill you.
It’s traumatizing and it’s only been in the last few weeks that I’m not as terrified of it happening any time, any place.
The first time it happened to me was November 2013, I was a flight attendant and I was alone in a hotel room.
Sat up at 230am and ran into the bathroom in time to throw up blood everywhere and have simultaneous uncontrollable diarrhea all over the floor and towels.
Then I started sweating really bad and feeling this weird super hot sensation all over inside. My skin turned bright red everywhere, my heart was pounding out of my chest and I felt like everything was shutting down and I was going to pass out.
I tipped over onto the floor and just laid with my face on the cold tile and breathed heavy and gasped, my mouth was so dry and my chest was so tight. Trying to concentrate so hard on staying calm and conscious and not blacking out which is what I felt like doing.
I eventually was able to get up and stumbled naked, groaning, covered in vomit and feces (and not for the last time unfortunately) to the other end of the hotel room. I couldn’t form a coherent thought.
Then I had the urge to lay star fish on my back on the carpet. So I did.
Slowly things started going back to normal. I started getting chills from the sweats, the flushing went away, my heart stopped pounding and was just racing, I didn’t feel like I was going to black out, my cramps and nausea started lifting.
I knew that I wasn’t out of the woods though because WTF was that all about and what if it happened again?!
There’s a whole second part to this story but I’ll save it for another post. This was just the first time it happened and was a look ahead to what would happen almost a year later when I suddenly had that happen even worse 3 times in one week.
I never would have guessed that a year and a half later I would be writing about it on my website about a disease I had never heard of.
But here I am, and here it is, and this too is all part of the process of accepting my new life with anaphylaxis/shock and 2 chronic cancers as permanent life partners.
I hope this post helps let others with this know they aren’t alone, which is something we all want. It sucks, and it’s scary, but you aren’t alone.