I started writing you an email yesterday, but by the time I actually thought about sending it, the day had gotten a little too real and I had to watch two terrible movies (seriously, terrible — Fast and Furious, not even the first one, and GI Joe — wow), take a painkiller for my new PICC line (“do you have anything stronger than Tylenol that’s not morphine? No, I don’t have a problem with narcotics it’s just that morphine seems a little dramatic…thanks.”), and go to bed.
Weds afternoon they removed the “pig tail” catheter from my heart which was in charge of draining the fluid. They call it a pig tail because it is shaped like one, which I’m going to leave to your imagination of just how pleasant that feels once the fluid is actually drained and it’s rubbing on my heart muscle. Tuesday night my EKG (the heart beeping test with the bouncy lines on the paper) came back with “irritation.” I might have pointed out to the doctor that the irritation was probably caused by the “f-ing piece of plastic you have jammed in my chest.” So, out it came on Weds. Best part? I could actually take a deep breath. You know, the kind where you actually lower your diaphragm and your belly sticks out and your pants get a little tight? That kind of deep breath. And it is miraculous. I’d forgotten what it felt like to actually breath. So I’ve been practicing since Weds, and I feel amazing. Also my resting heart rate dropped from about 80-90 to 50-60. Phew.
And THEN, because the catheter was out, and I didn’t have a huge bandage on my side anymore, I could take a real shower. I don’t know how many of you know this about me, but I’m a water baby. I love the ocean, pool, hot tub, bathtub, shower…you name it, if it has water, I’m probably looking at it, listening to it, or trying to get into it. So on Thurs morning, I took a 30 minute shower. And breathed the humid air all the way into my waist. Totally spectacular.
And, because of all the steroids, the tumor has shrunk enough to release the pressure on my vein, so my arms no longer look like sausages, and my face/neck have narrowed. Which means I can sleep almost laying flat. Three cheers for symptom management! If it wasn’t for the honking huge tumor in my chest, I could go home feeling better than I have in at least a few months.
But back to that honking huge tumor. Last night we got the final word from the doctors here. Describing this to you helps me synthesize the information, so, thank you for being on the other end of this email. I have, drumroll please, a “Diffuse Large B Cell Lymphoma involving the mediastinum (in the middle of the chest above the heart between the lungs) — no bone marrow activity seen (yay!)”. No other cancer anywhere in the body (I’ve never been so excited to have “grossly unremarkable adrenal glands, gallbladder, kidneys, pancreas, liver, and bladder (and a bunch of other stuff that’s all good news)”). We have a plan, but we’re not activating the plan until second opinions have been found for both the diagnosis and the suggested treatment. Which is being done today.
The suggested treatment involves 6-8 cycles of 5-6 days of in-patient chemo (something called R-EPOCH if you are curious) followed by 17 days off. Rinse and repeat until we’re done and then bat clean up with some radiation. Goal: 100% remission (aka: cure).
I woke up at 4:30 this morning for a blood draw, read for a little bit, and then wandered the halls like Miss Havisham until my magnificent sister called and we chatted for 45 mins while I sat on an exercise bike in the visitor’s lounge (yay lungs!). Clearly I’m a little antsy. So, today we get second opinions while I watch Wimbledon and remember to breath deeply (and maybe hang out on that bike again).
Thank you, again, for all of your calls, emails, texts, pictures, gifties, iTunes gift cards, and shining love…it’s all I want from each and everyone of you.
Much love,
Lydia
