Yesterday was a pretty good day! It seems that each day is getting a little better than the day before – yay!! The fatigue is pretty strong, but I can work with that. What a relief!
For those of you who may not know how I arrived at this place where I am now taking chemotherapy, here’s the back story (if you’re interested). It’s a fairly long story, full of medical mystery, intrigue, and suspense! That makes it sound much more glamorous than it really is. It’s actually full of medical delays, confusing diagnoses, and endless frustration. I’m going to split it up over two or three days to keep you from nodding off in the middle of it. :)
It was a dark and stormy night; the rain fell in torrents. Oh, wait, that’s not my story, that’s how the novel, Paul Clifford, starts! Well, it might have been a dark and stormy night. It’s been so long now, it’s hard to remember exactly!
It all started with a few bumps I noticed on my back. Nothing alarming, just some slightly raised, pinkish bumps. Some are the size of a dime, some a little bigger than a nickel. I first noticed them more than a year ago and kept thinking that I should go get them checked. But I was “too busy to be bothered,” “didn’t really think they were anything other than little pieces of fatty tissue,” and was certain “they didn’t look like your typical skin cancer” which was the only thing I thought they could be.
Sometime in May, I noticed a new, smaller one appear behind my right shoulder. Same presentation, pink and a little puffy, just a tinier version of the others. I reluctantly made an appointment with the dermatologist thinking she would look at them, tell me exactly what they were, and how to get rid of them. She looked at them, said she didn’t know what they were, and asked if she could biopsy them. At this point, a tiny little voice in my head said something wasn’t quite right, but I still believed the biopsy would come back negative and all would be right with my world.
Two weeks passed and I went to have the stitches removed. No test results yet. Another week passed and no news. Finally, 3 1/2 weeks after the initial biopsy, the doc calls and says, “the pathologist is fairly certain you have some form of lymphoma, but the lab is doing some additional testing to determine more about the type.” Excuse me, what?? I was so shocked I didn’t even ask questions – I think because I didn’t fully grasp what she had said. Heck, I wasn’t even completely sure I knew what lymphoma was.
I was at work at the time, so I stepped outside to call Barry. He, too, was stunned. We didn’t really know what to say and I had to be in a meeting in five minutes, so I told him I would call him when I was done. I called him back, he had already Googled it like crazy, but we still had so many questions. What kind did I have – there are two major forms of lymphoma and within those forms, numerous subtypes. How aggressive was it? Was it life-threatening? Would it involve chemo and radiation, or maybe just one or the other? Or would it even require either one? Maybe they could just do surgery and remove the bumps? Question after question filled our heads and flowed onto our keyboards until finally we quit researching. My brain couldn’t process any more what-ifs. We would just have to wait and see what the doctor said. And thus began what felt like the longest week of waiting ever.
We decided not to tell anyone until we knew for sure that it was lymphoma and had some idea of what kind. I think that’s because I was really hoping the first biopsy was incorrect and it was just a false alarm, but I also didn’t want to worry our families before they had to “be worried.” On Monday, June 13, the doc called to tell me the pathologists agreed that it was an indolent form of b-cell lymphoma, possibly of the Mucosa Associated Lymphoid Tissue (MALT) variety – whatever that meant. MALT made me think of a milkshake, but I knew it would not be anything that sweet or wonderful. She explained that this is a form of non-hodgkin’s lymphoma and that indolent means slow-growing, so this was a good thing. In her words, “if you have to have lymphoma, this is the one you want.” However, the pathologists wanted to send the biopsy to a lab in Boston because there were some unusual circumstances with it and they wanted further testing to be done there. In the meantime, she had scheduled an appointment for me with an oncologist for June 22.
Oncologist is the word that really got me. Lymphoma had shaken me up quite a bit, but knowing that I was going to see an oncologist changed my outlook on the whole situation. Up to this point, I was actually naïve enough to think that this was something that could be handled by the dermatologist – maybe with a little surgery – and everything would be just fine. Silly me! :)
We told our families and settled in for the week and half wait. In the meantime, Barry, myself, and our families all Googled indolent, b-cell non-hodgkins lymphoma until there were no more results to be found. Ok, this might be a slight exaggeration, but it sure seemed that way! Some of the information was terrifying; some of it reassuring. I eventually stopped looking because there were still so many “unknowns” around this diagnosis that I was making myself crazy worrying about all of the possibilities.