SOMETIMES THE BUMPS in the road in my recovery feel like they are never ever going to end, and maybe they won't. The 'road bumps' though, are just part of life, really. Life really sucks for everyone sometimes. And everything is relative. The road bumps will certainly get more insignificant though, and they already are. A lot of people open up to me about their own health struggles, most likely because of my own struggles and how open I've been about it, and they more often than not qualify it with 'Well, it's nothing in comparison to what you've been through'. That might be so on the face of it but I received a great piece of advice from a friend's mother many years ago and it stuck with me: Everyone's problems are relative, and no one person's struggles are more important than the next, it's just a different path. I am extremely lucky that I am even in the United States. My friend Tara told me about a friend of hers who is from Afghanistan. When I was in recovery from my liver transplant, she told him the story, with wide eyes, expecting the sort of reaction she had become accustomed to (shock and horror). He said, nonplussed, 'Oh yes, my friend died of that.' It happens all the time there and around the world, where often transplant isn't even an option. So it's relative, and I know I'm fortunate. And as Westerners we take advanced medicine for granted. And yeah, what I've been through is pretty terrible, but it's my journey and I wouldn't change it (mostly because I can't but also because I feel like something positive has to be coming around the bend).
Saying that, there are myriad things that I now have to come to terms with on a daily basis that I just can't always abide. And my patience is wearing brutally thin. This past week I've had a cold and wasn't allowed to travel due to a condition called 'severe neutropenia' which means your white blood cell count is low and you're more prone to infection than normal. Which means no flying. Ok, that's fine. I can move the goalposts and be disappointed about it and move on about that frivolous luxury (after a solid 4 or 5 days of complaining and extreme denial). 'Maybe I can just book this $1500 flight to California for tomorrow and not tell the doctors, what do you think?' I said to Tara only 5 days ago as I furiously searched Skyscanner for deals, knowing full well that it was a fantasy. Those emotions I can move through and feel the feelings and say the crazy things and carry on.
But when I'm still being faced with conditions like a low WBC, for the third time, for which I have to inject myself with Neupogen (or politely ask my mother to do it if I'm feeling squeamish, which is most of the time), it's the little things that really set me off. I've had this cold for two weeks and although I was lazy at first about the tonics I usually make myself to kick something like this, it keeps persisting despite drinking cup upon cup of my personal cold remedy and I'm starting to go mad. Not really because of the cold, but because I have an ear issue, that I've had ever since transplant, and it gets about three thousand times worse when I have a cold. It's mostly annoying because I can hear myself talk, which is basically the most brutal thing ever. You know when you hear yourself on a recording and it makes you cringe? That's what's happening in my ear right now, 24/7. I can also hear myself breathe, as if I was in the International Space Station or Darth Vader. When I chew, there's the sound of the food being chewed basically IN MY EAR. I've had it checked by multiple Ear, Nose and Throat Specialists and they can't see anything and don't believe me (ok, the not believing me might be me projecting). But god give me strength, as my grandmother used to say, because I'm not making this up: it feels like there is a hole developing in my ear. Like my ear is just melting into my mouth or something. One doctor suggested it might be a collapsed eardrum but I have no idea what that means and no doctors (ENT or otherwise) seem to know what to make of it nor are they interested in exploring it further.
Then, last night, I was going to sleep and I felt under my arm and there was this strange bump. I am admittedly, pretty gross, so I thought it might be an ingrown hair and it piqued my interest (every girl knows what's up with this--don't tell me you don't love a good ingrown hair). I turned on my light and I had all these deep lumps all over my underarm. Then I suddenly had the urge to check my other armpit. Same thing. WHAT THE HELL. In the night I was uncomfortable and, half asleep, reached for the last of my Avene Thermal Face Spray (basically it's water in a can that claims to 'hydrate') and sprayed it all over my underarms for relief. I don't think that's what the marketing team at Avene had in mind, nor do I think I could pitch them on the multi-use capacity of their product. The woman in this photo would never get lumps under her arms or anywhere else for that matter. I don't think this woman even knows what a fart is.
Throughout the day today it's gotten worse. And after a quick Google search this morning, this afternoon and again tonight, I am in my mind's eye, diagnosed with Breast Cancer, Lymphoma and some other parasitic disease I can neither spell nor pronounce. Because that's what bloody well happens when you Google things. I would not recommend Googling collapsed eardrum, either, if you maybe have what I have (unlikely) because that'll get you thinking about when you should schedule your next ear surgery (also unlikely).
So this is my new normal. When I used to get the common cold (which was basically almost never), I would let it ride, and not care about it much or pay attention to it. If I got a rash I was like WHATEVER BRO PASS ME THE ALOE. If I stepped on a nail I was like and WHAT? I got my tetanus vaccine back in the day let's go paragliding. Nah, just kidding, I would never paraglide, that's only for white dudes in snapbacks from Omaha. But for real, I wasn't a hypochondriac. I wasn't the person who would be freaking out if I got a stomach bug or a splitting headache. It just wasn't in my DNA. My parents, especially my dad, never indulged me much when I was sick (except for every single time I cried wolf I was sick to get out of school and my ma would be like 'oh ya honey let's hang out all day together please don't go to school' -- true life stories from an only child). My dad's favourite thing to say to me as a kid if I fell over or hurt myself was 'Shake it off'. In my 7 year old head I'd be like dad, what if I don't want to shake it off, dude? What if I want to cry for another 20 minutes? It was useful later in life, though. *Except for that one time when I put off going into hospital when I was in liver failure, that didn't work out so well for me, I guess. So tonight I was eating ramen at home with my darling father and I was talking about The Blob-esque situation going on under my arms (see below for reference) and being extremely dramatic and asking him to speak loudly so I could hear him because I'm now deaf in one ear (I said I moved on quickly from illness, I didn't say I wasn't into the DRAMA of it all). 'So, do you think you're a little hypo now?' he asked me.
Which I hadn't really pondered that much, at least not in those terms. I've never thought of myself as a hypochondriac, but over the past 7 months I've been conditioned by my medical team to literally fear everything. They don't mean to do it, but they do. 'So can I use Nair?' the answer comes back 'Oh, there are so many chemicals in Nair, I wouldn't for now.' 'Can I get a smoothie from the juice place?' 'Oh no, you have to exclusively use fruit and vegetable wash now.' 'How about a salad?' 'Not unless you use your veggie wash.' 'Can I go to physical therapy yet?' 'No, there are so many germs in those places, I wouldn't just yet.' 'Can I got to therapy now?' 'Let's just put that on hold for a few months.' 'Can I go back to being vegetarian yet?' 'No, you know, you need so much protein in order to heal, I'd do another few months of 70 grams of protein a day.' 'Can I lick the side of the bus stop outside my house?' 'No, you'll definitely die from doing that.' 'Would you recommend not using a condom with the friendly hobo on the corner I'm considering sleeping with because I've been out the dating game for 9 months.?' 'That would be extremely irresponsible, even at the best of times, what is wrong with you, Nora?' No. No. No. Maybe later. Never. Absolutely not. I don't see why not. Let me ask someone. No. That's what it feels like, even though there have been some yes's, like going to work and allowing me fly to Miami 5 months after transplant. It's obvious why I'm fearful when something small happens, since I've been barred from doing so much. I often feel like they are not even listening and the knee-jerk is ALWAYS no. I didn't participate in society for over 5 months and most of the time it was as if we were speaking two different languages altogether, me and my doctors.
So today I called the doctor on-call at the hospital about these mysterious lumps under my arms. It's the weekend so obviously people aren't working and if they are I am certainly not the priority -- they're saving lives. My doctor is a top-dog and he has a lot of 'partners' who screen the inevitable hypochondriac phone calls he receives on a daily basis, and who I have never met and don't know my story. So of course some doctor I don't know called me back and was blatantly annoyed that I was bothering them on a Saturday. I get it, I am not particularly thrilled to be calling you either, but I was told only last week that I wasn't allowed on a flight and yesterday I ate some fish stew and now I'm considering calling the funeral parlour and penning my own eulogy and making a sweet playlist to play at the party after my funeral when I die of inevitable food poisoning of the armpit, so bear with me.
'What's the emergency, Miss Logan?' (I never got used to being called Miss Logan in the hospital, so formal and antiquated). 'Well, it's not exactly an emergency, but I thought I was supposed to call if there was anything wrong or amiss.' 'No, you're only supposed to call if there is an emergency.' I couldn't even get halfway through explaining what was wrong with me 'Well I have these lumps under my arms I think they might be my lymph nodes, they just sort of appeared overni-... 'Do you have a fever?' [ALL DOCTORS CARE ABOUT ARE FEVERS I SWEAR TO GOD] 'No.' 'Well all I can suggest is that you go to the ER if it's really that concerning to you otherwise you can wait until Monday and call the clinic during normal business hours.' She sounded exasperated that I was wasting her time with this trivial fluff, she's in the liver business not a the business of talking a 20-something with a rash off a ledge. And YES on the face of it, it sounds trivial but how the fuck am I supposed to know if it is or it isn't, considering what I've been through? And the other thing is, I've decided not to call on the weekend previously, because of this EXACT reason, and I've been chastised when I do go in and tell them my symptoms 'You should always call, Nora.' Sometimes it's nothing, a lot of times it's something and it's bad. Like infection and procedure bad. And when I was still super ill, and going through a whole host of other complications and I'd look at websites of other patients who have blogs, a lot of these people would say 'Always call your transplant team if you have ANY questions and they can tell you the answer.' I think it's wonderful and empowering to write about one's experience and I have a deep respect for the people who have these blogs. But that has not been my experience. Maybe these people's doctors aren't New Yorkers.
A lot of the time the doctors do know. I'm not hating on doctors. The doctors saved my life and they did a damn good job at keeping me alive when it was very touch and go and I really love them, maybe to an inappropriate degree (I always go for the hug, they always go for the handshake, it's so fun). But a LOT of the time they also don't know the answers, or they are busy and you feel like a nuisance. So today I'm throwing my hands up and resolving to ask 'Listen, what is the correct protocol for me to follow, because I feel like I get a lot of mixed messages.' Not that that will necessarily clear anything up the next time I stub my toe and wonder whether my hepatologist needs to know (jk I would only call him for that if I drew blood from the toe stub). On the one hand I'm to be vigilant and let them know about everything, on the other, if I tell them about certain things, I feel like I'm hitting a wall and I'm to go elsewhere for the answer or to call after 9am on Monday or go into the Emergency Room which is not my idea of a fun Saturday night. Or I feel stupid for worrying about it. I just want to say, that if there is someone out there, transplant patient or otherwise who feels alone and doesn't know where to draw the line in their paranoia or hypochondria -- whatever the manifestation of their fears instilled by them by their experience, conditioning from medical professionals or just bog standard mental health issues and a fear culture -- you're not alone and there is never a right way to do it. It's easy for someone to say ALWAYS ASK YOUR DOCTOR, as if that's the answer for everything. But are you going to have your doctor on speed dial if you want to eat that pickle with the sandwich at the restaurant that came straight from the jar because you love pickles but you know it's a little iffy and there's a high sodium content? God, I certainly hope not. Or are you going to call your doctor if you get a slight pain in your mouth the first time you go to the beach after being stuck in a hospital room and New York apartment and start hyperventilating and crying and it turns out just to be an ulcer? I don't think so. Are you going to never go to the bathroom in a public place again even though you have a tiny bladder and you live in a walking city? No. Are you going to go back to the dingy bar in Bushwick where people have clearly either just had sex in a stall or been doing lines of coke or both to pee? No, because you're not 21 anymore and it's not a classy place that you would like to frequent.
This is me at 21 in a stranger's flat in Paris posing with a Chucky doll in an ill-fitting belt. Because those are the kind of choices 21 year olds make. I'm 21 in the pic on the right too in one of the aforementioned gross spots I should probably no longer frequent sticking my tongue out.
You have to pick and choose your battles and you have to decide what's right for you and make educated decisions. This doesn't make it easy or straightforward, and it doesn't make you feel any less alone. Hopefully you will have friends like Barrie that you can Facetime and show her, her wife and another friend your armpits because you prefaced it as a having a 'skin question' and she'll offer to ask her doctor friend and he'll be out on a Saturday night but look at the gross photos you took with the self-timer function on your phone and at least tell you what he thinks it might be and say you may need an antibiotic but not to worry about it too much. Hopefully you'll have that piece of information to get you through the weekend and then you'll figure it out as the days come and if it gets worse, it gets worse and you do go to hospital, like the responsible adult you are. Or you'll be one foot in the grave until Monday morning and focus on that. For me, it's a constant battle in my head but my motto is to feel all the fear in abundance, expect the worst and do what I want anyway, because I stayed alive for a reason and it wasn't to hide in my room being afraid of the world. And then be pleasantly surprised when things turn out OK.
It's only a few weeks until I can take the subway again and I never thought I'd see the day that'd I'd be excited about riding that cesspit of a public transport system. It feels like a final frontier in my recovery, but when things like this happen I am reminded I'm still in the early days, in the scheme of things. But listen, Spring is here and you know the old saying 'Sun's out, guns out' and the subway is a great way to meet guys wearing disgusting flip-flops which I think is extremely inappropriate subway attire, but I need a date. Going to make some business cards with a link to this blog post and the tagline 'Friendly hypochondriac looking for love in the big city. Doctors, medical school dropouts or people who have exclusively doctor friends need only apply.' Will let you know if I find a business card that can fit all that copy on one card.