I hate needles.
My mom used to have to hold me down. Along with at least one other nurse. In 7th grade, a friend of mine with diabetes shared her needle secrets with me. We were on an orange school bus, heading to O’Connell Junior High one morning and she gave me the lowdown. It was as if I was being inducted into some sort of secret society. “Watch the needle, breathe and force your muscles to relax as the needle goes in”, she whispered in a soft voice barely loud enough to be heard over the metal of the bus and kid squeals that surrounded us.
Her approach works. If you watch, breathe, relax – needles hurts less. But I still hate them.
I started getting infusions in September of 2008. They have the benefit of supporting my immune system and allowing me to live more days healthy than not. I never would have guessed that Tracey’s advice would come in so handy. I secretly thank her each month as the needle goes into my arm. Holding the rubber ball, elastic band tight around my bicep, my veins swell. I watch the needle go in and exhale. Once the needle is in, I wait to feel the antibodies make their way into my blood stream. They tingle as they enter my body, slowly. Drip, drip. I imagine little soldiers; armed for the fight. One, two, three, four. One, two, three, four.
These “sessions” are my mini vacations.
Now of course my treatment days are a far cry from your standard spa day. It isn’t like I am disappearing for the benefit of a massage, facial and pedi. Far from it. When I was in NYC, these days typically entailed me hoofing it up to Mt. Sinai hospital for the better part of an afternoon, being stuck with an IV needle for 4 or so hours and just having to be reminded that my health is less than 100%. To pass the time, I usually brought my laptop, connected to the Internet and enjoyed an undisturbed few hours of work, reading, surfing, emailing, what-have-you. In New York the infusion nurses knew that I would sit wherever I could find a seat, so long as I had access to an electrical outlet. Unlike most folks who plopped their masses down into the hospital-issued La-Z-Boys and put their feet up, I liked to use my needle time in a constructive and productive fashion.
I did this in part because it is who I am – I have a hard time sitting still. I also did it in part because these hours were devoid of interruption (a rarity). When I was working that meant manipulating a model, doing research or writing a research note. I often scheduled client calls during my infusions too – because I knew I’d be able to focus. Most people didn’t know where I was and if even if they did, would rather spend an afternoon anywhere but here. I missed my friends on these days, but understood. Everyone has their life to look after and hanging out with a bunch of compromised people is not a top priority. At least it wouldn’t be for me.
The only person who ever came to visit me regularly was my friend Sam. He and I would talk for hours.
Now that I am not working and we are traveling, I’ve looked forward to today for the last few weeks. My first infusion abroad gives me an opportunity to catch-up on my writing and an opportunity to reflect on our travels. We’ve been so busy running around that I have to sneak a few minutes in here and a few minutes there – writing when I can. That’s fine, we are living life and while it’s great to write about it – I don’t feel pressured to write for the sake of writing. My biggest frustration is that wonderful things happen and I want to write about them, but then we get carried into something else and I get distracted. I plan to get a lot done today.
Life doesn’t always go as planned.
I’ll get a few things written, but not as much as I’d like. Mentally, I am just not in full-on writing mode. It takes a while for me to acknowledge this to myself, but then I cave. My resignation allows me to breathe. I am disappointed, but know it is impossible to force the writing. Having a needle in my arm isn’t what I’d call inspirational.
What’s more, it is just different to get an infusion in Sydney. I am admittedly distracted. I didn’t realize what a New York routine I’d become used to back in the States. Now I am beginning to.
In New York, I jump in a taxi 45 minutes before I am scheduled to report for duty and head up to Mt. Sinai. When I get up to 98th and Madison I jump out, head into my deli for some infusion-nibbles (a coke soda, sushi and a bite of chocolate) and then I rush up to the 11th floor. I know the nurses, they know me. I know the chairs and the drill. After a year and a half of monthly infusions, I’ve polished my routine into something quite comfortable.
When I first informed the folks at Mt Sinai that we were heading to France, but traveling for a while first – the nurses thought I was a a tad bit crazy. “How are you going to arrange that?” they admonished. Clearly no one had broached the topic of travel with these folks before.
I honestly didn’t know how I’d make it work; but I figured immune disorders probably existed throughout the world and with a little work – I could get the treatment I needed to travel and stay healthy. Having Armon’s support made the challenge seem simple and I knew we’d figure something out.
My husband did a ton of work to make this possible and for that, I am grateful. Once every 4 weeks I need to be somewhere that I can get my meds properly administered. I need access to the medication, access to clean needles and access to proper medical equipment. In other words, a 7 week jaunt to Botswana is probably out of the question. It also means that a lot of coordination has to happen beforehand. I can’t just make a plan and disappear for weeks on end.
We need to find an immunology department, contact them, explain the situation, send them my medical records, get approval for the process and then schedule the appointment. Yes, this is a logistical nightmare. And yes, it is worth it.
In Sydney, it also meant that even though everything had been pre-arranged – I needed to visit the hospital the day before my treatment to meet with a doctor, walk him through the history and make the final arrangements. Not the end of the world by any stretch, but a wee bit of a pain in the tookus.
I showed up at 11:30am as planned and said goodbye to Talia, Judah and Armon (who are out exploring Sydney). The kids were sad that I was leaving so there were some stressful tears as I said good-bye in the porte-cochere. That stress translated into me not getting Armon’s latest cell number – so I am here without anyway of getting in touch with him. This is frustrating and leaves me a feeling a tad bit exposed. I am in a new city and have no way of proactively getting in touch with my family. Odd.
Up to the center I go to check in. I am told it was busy today so I am asked to wait. I oblige.
I pull out my computer and try to jump online only to find out that there is wireless here, but only for fully admitted patients. Not outpatients. Frustrating and again, strangely unsettling. I want my Internet. I realize I am still in the throes of withdrawal despite having been on the road for more than a month. I no longer obsessively check my iPhone every 30 seconds, but still want to feel safely tethered to an electronic device. After years of being obsessively connected – breaking this habit is surprisingly difficult.
Deep breath. I can write without access I say to myself. So I begin to organize some photos and think about what I want to write about. I am sitting in the Center for Infectious Diseases and Immunology reception and beginning to get to work.
Next to me there is a commotion and I realize that there is a really sick man sitting next to me. He is over-weight, shaking and sweating profusely. Really sick. “Oh, great. A seriously ill person sitting in the immunology department. How ironic is that?” I think to myself. I am not the only one who notices. A nurse stops in her tracks, backs up and then asks for his name. She disappears and no more than 2 minutes later a scurry of activity erupts. More nurses, more doctors and more questions. He is somewhat coherent, but not entirely. His face is dripping onto the linoleum floor. I think about getting up and moving to another chair. I am not sure what stops me.
Ultimately, a few nurses take him into the infusion center, lay him down and begin to run some tests – blood pressure, blood sugar and the like. Everyone is talking in an exaggerated and elevated fashion; it is obvious there is some stress in the air around this guy. I am still waiting for the nurses to call my name when the head nurse, Ali, comes along and says I need to go over to the private hospital to pick up my immunoglobulin. She gives me directions and off I go. I laugh to myself, “Who would’ve thunk. I need to pick up the Octagam and bring it to the doctor!” Again, a victim of routine.
I follow the nurse’s directions. Down the hall, make a right at the stained glass, go down the corridor, around the bend, into the main lobby. Go through the main lobby and on your right is the pharmacy.” I wind my way through the maze and unfamiliar corridors until I stumble on the pharmacy just past the main lobby. I ask for my meds. This feels odd to me to say the least. Walking into a hospital pharmacy/gift shop and asking for human antibodies in and amongst over-priced stuffed animals, balloons and chocolate feels surreal I think about buying a snack and much-needed shampoo but then think better of it. I can get the shampoo later. Antibodies are enough for now.
Brown paper bag in hand with 3 vials of sticky (so I am told) clear liquid….back to the infusion center I head – to wait some more.
Finally they call me and into the main room I go.
The La-Z-Boys are the same as New York – that’s comforting. Save a slightly darker color of blue.
Unlike NYC – the nurses don’t take my pulse or my temperature before we start. Odd. There are only 2 other patients too. I am used to being in a room with at least ten others. They all sit their like beached whales – head back, swollen feet up, girths exposed. Lying complacent as the drip-drip works its magic. Crohn’s Disease, Common Variable Immunodeficiency, Chronic Inflammatory Demyelinating Polyneuropathy – we all have different reasons for being there. Some have been coming for 20 years, others for months. Most are older. I rarely see someone twice. NY’s infusion center is what you’d expect in NYC – full of hustle and bustle. People from all walks of life – Long Island, New Jersey, Westchester. Rich, poor. The room is always full.
Also unlike NYC, there’s a crazy man 10 feet away and the medical hubbub is ongoing as the nurses and doctors try to figure out what’s wrong with him and he belligerently scoffs at their concerns. They want to admit him; he refuses.
The head nurse, Ali, can’t get the needle into my arm and after several attempts, tries a new spot. My veins keep rolling and I am beginning to feel like a pin cushion. I focus on ignoring the pit in my stomach. Finally, success. The needle is in and the IV started. Everyone is surprisingly nice, but there’s a strange informality that I am not used to. Ali tells me, “we like to rush you through and get you on your way – so we are setting the infusion rate at full speed – just holler if you need us to slow it down”. They’d never do that in NYC, but that’s cool I think. I want out of here – not only to get back to Sydney and my family – but also because this guy is completely loco. I am ready for the challenge of being infused at turbo speed. An hour goes by, and I know I won’t get any writing done today. My plans to write about our time in Queenstown go out the window. I just can’t get my head around the idea of being creative. Or about writing about something fun. Somehow sitting here in the hospital, with a needle in my arm and a crazy man across from me renders all creative instinct mute. I more fully appreciate how places like Aix-en-Provence support artists such as Cezanne, Van Gogh and Picasso. A hospital is so far removed from anything inspirational.
I’m beginning to get the shakes and feel the flu symptoms start to take effect. I try to ignore them. I remain intent on pushing through the feelings of nausea that roll through me like Bondi waves. It’s like pushing yourself to finish a run when you’d rather puke and walk it off. I know I should have them slow the rate of infusion down, but I started later than I expected and want to get on with it. Not at all unique in this thought, I find hospitals depressing.
I am in full shake mode now and can’t type anymore. Forget about writing cheeky letters about our trip, I can’t even type an email. At the same time, I can’t just keep listening to this kook cough, chew on phlegm and spit profanities at the doctors either. Somehow the shakes magnify the intensity of the noises in the room, the fluorescent lights above me. His craziness. I find myself thinking I can’t just sit here. The meds always make me feel as though I am coming down with the flu for a day, so my feelings aren’t unfamiliar. But they are unsettling despite my best attempts to ignore them. Ali sees me shaking and rushes over a blanket. It skims the surface, but I am still shaking without control.
I need distraction. I need distraction.
Prison Break. Yes, that should do it. I am addicted to the show. And I have a few episodes on my hard drive. Jackpot. I am still finishing Season 1 since I haven’t watched TV in years – but between the pretty faces, toned torsos and suspense – I finally find the distraction I need. My built-in MacBook Pro heater (battery as fireplace) provides an assist as well and I finally begin to relax.
Crazy Sick Man gives his penultimate admissions refusal, but then attempts to leave the hospital naked. I kid you not. It isn’t a pretty sight and I begin to feel nauseous again. He is sweaty, his tits hang down more than mine and straight into an impressive set of belly rolls. Below the waist he has even more rolls of fat and unidentifiable, soft squishy things. I look away. The doctors sequester him once more – this time making him dress before he declines admission for one last time. And he stumbles out of the room. Everyone visibly relaxes. This is the hospital, but the cadence in these infusion wards is one that you’d expect with chronic illnesses. Relationships are built, emergencies are far and few between and the pace is more of a waltz than a break-dance. Patient comes in, gets comfortable in the La-Z-Boy, vitals taken, meds gathered, needles inserted and “go”. Up for the occasional bathroom break and then needles removed, vitals taken and next appointment made. Departure. Crazy Sick Man upset the natural balance of things.
Two minutes after he leaves, a detox crew comes in to clean up the space. Gloves on, masks on…they get to work and start to scrub.
I am nearly done when Ali comes over with portable phone in hand. Armon’s on the line. The kids are both crying in the background and he is flustered. I try to talk with Talia, but she’s hysterical. “I want you mommy” is all she can choke. I can’t do a thing but try to reassure her and tell her I’ll be done in 10 minutes and that I will see her shortly.
I feel like hell and I can’t wait to see my babies. I also can’t believe that we are going out with Lance and Melissa tonight – of all nights. Ugh. Just keep running, keep running. This too will pass.
A month later, I am sitting in the hospital in Perth for my second trip infusion. I look back on Sydney’s infusion and think “wow, what a crap day” and I realize that it really was a rough haul. I wasn’t feeling 100% at the time and when I go into an infusion at less than 100%, its side-effects are stronger. I was also dealing with the breakage of a routine.
I ran into some equally interesting, yet non-critical logistical issues this morning – but so far today has gone much more smoothly. My mindset is better. I know there will be surprises (like this morning when I was delayed 2 hours as the hospital tried to figure out how I could pay them since they don’t take credit cards). They again could not get the needle in so I had to deal with ten minutes of “oops, your vein rolled again”. But overall, I feel pretty good. I am establishing a new routine – one of not having one.
I also had two positive surprises today. In Perth, they bring you lunch. That’s a first. It ain’t much, but it’s just as good as my Mt. Sinai deli food. The second surprise is of more significance.
For the first 3 hours, I sat next to a wonderful soul and woman who I would guess is in her mid-50s. Like me, she has a chronic condition that requires frequent medical visits and infusions. When she heard I was from NYC she asked me about traveling and we began to talk. She had the aura of someone spiritual, was clearly well-traveled and quite inquisitive. It turns out that she was diagnosed roughly 1.5 years ago and she has a life expectancy of 3-5 years post diagnosis. She should have 1.5-3.5 years left to live. She hasn’t travelled since being diagnosed.
In talking with her, she and her husband didn’t think it was possible to travel so they stopped. She said she cried more over her inability to travel than anything else when she received her diagnosis. Basically, given the frequency of her infusions she just didn’t think she could leave town. For the last 1.5 years, her calendar has revolved around her infusions and her death sentence. Today, she asked all about how I managed to schedule my infusions from the road and how I’ve found the logistics to date. She was thrilled to hear that it is indeed doable and was already asking for help from the nurses as she left. She said I gave her hope. I know she will get back on an airplane after today. Amazing. Serendipity.
One last thought and perhaps this should have been my first one. I haven’t gotten into the weeds of the ongoing healthcare reform bill politics, in part because we are here and in part because I lack the patience needed to do so. I left NYC thinking that our system needs to be overhauled and I continue to believe it. I am thrilled the bill passed and think it is a step in the right direction.
The experiences I’ve had in Australia have been nothing short of amazing. Forget the “day of” complaints that I wage, the fact that I’ve been able to get the medication I need for 20-25% of the cost it is in the States is astonishing to me. Last week we were finalizing the details of today and we got the meds and the appointment set. On Friday night, at 7pm as I was cooking din – the doctor called Armon to let him know the specific logistics. “Rebecca needs to come to the pharmacy at 8am, pick up and pay for the meds and then walk over to the IV lounge (at the very least, it sounds posh) in the C Block of the hospital. We will check her in for the day.” Yes, the doctor himself. A doctor that I’ve never met and will likely never meet – but who had my referral from Mt, Sinai in hand. His goal – get her the meds she needs. Like Sydney, everyone I’ve met has been beyond friendly and supportive. They know they will likely never see me again, but no matter. They are taking care of people and somehow seem unfettered by the bureaucracy and politics that killed our current system decades ago. In NYC I knew no better. Now I do.