About a week and a half ago, I had to go in for a CT scan of my chest, abdomen and pelvis. It's not like I haven't had a CT scan done before. Or an MRI. Or an ultrasound. Or an X-ray (or several dozen X-rays). Or several of the above named tests for one injury, illness or another, except the X-rays. I'm pretty sure I'm probably up there with Evel Kneivel with the number of those I've had over the years, but at least some of those include pneumonia and bronchitis, so they weren't ALL injuries--just most of them. Except this CT was different. Other than looking specifically for signs of sarcoidosis (an autoimmune disease), my rheumatologist was looking for signs of lymphoma. Yes. Lymphoma. That super scary C word.
After combing through almost 15 years of labs, conducting and accumulating almost 80 pages of labs in less than 5 months, several other exams, physicals, tests, eliminating other diseases, my rheumatologist decided the most likely candidates: Sarcoidosis or Lymphoma. And, whatever this is, if it's Sarcoid, Lymphoma, or another autoimmune disease, I've had it for at least 15 years, probably longer. This is, by far, the worst flare I've ever had. I'm now well into month 7, with no clear end in sight. I'm still running a low-grade fever, I'm still exhausted, my hair is still falling out (how I'm not bald by this point is a miracle), my joints are still swollen, to say I'm in pain is an understatement--but it's not something that EVER goes away (it does ease sometimes. I have a small window when my pain medication kicks in if I have to get anything done around the house, so I choose wisely), and my lymph nodes/glands are still swollen enough to feel and are extremely tender/painful to touch. So much so, that I can't tolerate wearing a bra most days. Me. The one who like NEVER goes without one, even when I sleep because it's just that uncomfortable due to the girls' size. I just deal with the pain when I have to leave the house, since I'm already in pain, can't take my pain meds, so what's a bit more pain, right? But at least there's some good news. I'm no longer sleeping 20 hours a day. And I was put on a new medication 4 months ago and it's sort of working. The swelling/inflammation in my joints is going down (I put my smaller ring on for the first time this year the other night! Couldn't keep it on, but it's progress), but the joint pain is becoming worse and more acute. I'm seriously hoping it's temporary and the result of being so swollen for so long.
So yeah, the next logical step would be the CT scan. I was explained that if I had Lymphoma, something in my labs would have shown by now indicating it, other than the basic red flags that indicate "something" is going on in my system. (Re-I have like a 1% chance of having it)But the physical symptoms fit, I have to have the scan done, and it's one more disease she can cross off the list with certainty. But still. Cancer? Screw logic, reason, and rationality. I don't care who the hell you are, you can be Fort Knox, but when someone drops that C bomb in your lap, it rattles you on some level. And to make life even more fun? I'm deathly allergic to Iodine, so I couldn't even attempt the heart exploding doses of steroids and rhino tranquilizing doses of Benadryl in the 7-10 days before the scan because the scan is looking for, among other things, inflammation. And what do steroids do? Bring down inflammation. So it would kinda defeat the purpose.
I return to the doc next Friday, but I have serious anxiety issues and neurotic, and no chance in hell can I wait 3 weeks for those results. I was told it would be about a week before she'd get the results. I gave her a bit more than that and called her Friday. She received the results first thing that morning, but isn't in on Fridays and would call me today at some point. Great. An entire weekend (2 and a half days) then making sure the volume is turned on my phone, I'm never out of service range, and trying to remain calm waiting for her call. And playing out then endless permutations in my head. I'm a new patient, so I don't know her office protocol. Do they reveal test results over the phone? Do they only reveal good news? What if it's lymphoma? What if it's sarcoid? What if it's both? What if it's neither? What if they found another form of cancer? Would the tech even look for anything else? If something looked screwy (like the fact my spine is crooked), would they tell the dr? And so on.
So I turned my phone off silent last night and of course was up all night. Picked up my mom and after reminding her about the call I'm expecting, she mentions wanting to stop at the grocery store for "a few things" that we're out of. Just a few. Bread, butter, chicken was on sale, she wanted fruit, I needed creamer, and I did bribe the dog Saturday night if she behaved, I'd buy her new treats since her treat cubby was pretty bare. I didn't want to go for 2 reasons: I just knew that call was going to come while I was at the store and there's NEVER such a thing as "a few things" when it comes to the grocery store and my mother, especially when we haven't had the chance to go grocery shopping in awhile. And I was right. On both counts.
We weren't in the store 5 minutes when Schroeder's piano started blaring the Charlie Brown song. My mother and I froze and stared at the phone. "We have the results of your CT scan..it was negative for lymphoma, the lungs were pretty much clear..." I stood there stunned. I didn't have cancer. Or sarcoid. I had no idea how to react. I was good news. But I still don't have a diagnosis, so now what? What do I say? Can I ask questions? I'm in a public place. Shit, I'm not breathing. What is she saying? She's still talking..."And you have an ovarian cyst. You should schedule an appointment with your gyn and have an ultrasound done, we can fax the scans over to them. Who do you use?" Wait. What? What the fuck is she talking about? "What? Say that again?" I was a little bit more panicked than I realized because instantly her nurse repeated the stuff about the cyst again and made it clear it had absolutely nothing to do with my symptoms or my labs. And I realized my mother was pale as a ghost and grabbing onto a shelf as if it was her lifeline, but I couldn't speak. I know an ovarian cyst wouldn't wreak havoc on my system like that, nor would it cause anomalies in my labs, unless it was infected or something. But finding an ovarian cyst when they're supposed to be looking for lymphoma or sarcoid, or going over the 100+ scans to find out what the hell is wrong with me never even crossed my mind. I just gave my primary doctor's info. I'm not doing anything about the stupid cyst unless I have cause for concern. I get them all the time, so I know when to be worried and when not to be. But seriously? An ovarian cyst.
But of course the second I hang up, I tell my mom that I don't have lymphoma, but they still don't know what's wrong with me. And I begin to lose control in the store. And just like any good mother, she highlights the good (I don't have lymphoma, so now they can definitely cross it off the list, my doctors can further narrow down the "what it isn't" list with this scan, all but my primary doctor have been listed as "Top Doctors," so I'm in excellent hands) then she realizes we're about 15 feet away from the store's bakery and homemade brownies. While I am a stress eater, she knows it's a habit I've broken several times (and also made her share of comments when I've fallen off the wagon and didn't notice it), this was one of those times that deserved one of their "OMG" brownies. I can't give that woman enough credit. I try to stay calm under pressure, but lately, I admit I suck at it. I've been an emotional, neurotic mess. Her? She's on dialysis 3 days a week, dealing with her own health problems, a demon dog, a chronically ill daughter who was just tested for cancer, and everything else life throws at her, (including a panic attack and a near nuclear emotional meltdown in the middle of a grocery store because while the cancer test was negative, the sarcoid test was negative [I'm pretty sure it was], of all the random shit that could have shown up, an ovarian cyst? The fuck?I'm still trying to wrap my brain around the total radomness around that one..not worried, just one of those out of the blue wtf moments), She's a rock. And she's my rock.
Yes, they're actually called OMG brownies and for good reason. All these tests, all these years, all these symptoms, results, things you can't fake. Why can't anyone figure out what this is?
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