Pharmville

Since I was diagnosed with Common Variable Immunodeficiency (CVID), I sometimes catch myself thinking that I am OLD. Perhaps this is because I qualify for home nursing, or because my depressed immune system so often makes me feel tired. I had a dream the other night that I was going bald (not a problem for women of any age in my family), and I woke up and ran to the mirror, where I inspected my very-much-intact tresses.

Over the past couple years I have periodically received this postcard:


Being actively pursued by a cemetery also makes me feel old. However, I feel progressive, too, because even though I am not married, my fictional husband appears to have taken my last name. It's either that, or "Nancy" is the next big thing in gender-neutral names. The first postcard arrived right after I returned from a four-day stay in the hospital, when I was diagnosed with a platelet disorder (which turned out to be the first symptom of the CVID). I worried for a moment that the hospital had put me on some kind of list. You know..."People Who are Going to Die In the Near Future, Even Though We Lied and Told Them They Would Be Absolutely Fine."

And now, like many old people, my house is turning into a pharmacy. Four months ago, I started doing home infusions of IVIG (intravenous immunoglobulin) with a visiting nurse. The medication and supplies were shipped to me in a large box. This is what it looked like when I unpacked everything, for a SINGLE monthly infusion:



There's something about receiving your very own IV pole that cements the idea that you have now begun a slow descent into old age.

And then, as I mentioned in a previous post, I had an unfortunate experience with IVIG that landed me in the hospital several weeks ago, begging for pain medication. (Ah...nostalgia!) This prompted my immunologist to change my treatment to ScIG, subcutaneous immunoglobulin, which is something that patients can self-administer weekly after two or three training sessions.

So a new box of supplies arrived, followed a few days later by a nurse. He ran me through the steps, gave me written directions and completed my first treatment. The medication is absorbed under the skin, which makes the area receiving treatment tender. Frankly, I was sore and lumpy. (Lumpy: my new nickname.)

I was determined to become proficient in two sessions, so I could finally stop asking for time off from work. After my first session I hunkered down and got serious. I retyped all 15 steps so I could drill them into my head. I watched the Vivaglobin training video about a dozen times, often while holding the supplies in my hand, so I could practice. It was like being back in school and cramming for final exams.

By the time the nurse arrived, I was almost excited. Which was unusual for treatment day. But I breezed my way through, and he told me I had prepared more than any other patient he had seen before. He was confident I would be fine.

For the first time in a while, I was actually confident I would be fine, too. Granted, ScIG isn't fun, by any means. I still have to take Benadryl, because it makes me itch. And whichever area you chose to stick with the four administration needles is quite sore for the next day or two.

However, I finally realized that even with all of that, ScIG is a MUCH better solution for me. What it represents is treatment on my own time – no more half-days off from work (or more, depending on side effects). No more planning my life around the weekend I needed to recuperate from the IVIG. I will finally be able to take the medication, a small pump and supplies with me wherever I want to go.

Ultimately, it means freedom.

And nothing screams "I'm still young!" like freedom.

I Can See Clearly Now, the Pain is Gone

Dear Readers,

It has been more than a month since I last blogged. And lo! the wondrous places I've been! Mainly: an emergency room in Queens and an emergency room in Manhattan.

Let's hop into the Wayback Machine and pretend it's April 2, 2010. I am at home, awaiting a new nurse, so I can get my third at-home infusion of intravenous immunoglobulins. She arrives, seems nice, bangs out the infusion in record time, and leaves. I feel tired, as per usual, and crawl into bed for a nice nap.

BAM!

I wake around 10 p.m. with a massive pain in my neck. Excruciating. Unable-to-move-my-head pain. I grab a heating pad, wander over to Bob (my recliner), and settle in for a heat-and-greet session.

By the next morning, I remain awake and immobile. But I know that muscle pain is a potential side effect of the infusion. So I wait it out. I call Dr. Mom, who makes me promise to go the hospital if it doesn't get better. Reluctantly, I agree.

By Sunday morning, I had traded "reluctant" for "Dear God, please give me pain medication!"

So I called a car service, hustled over to my local ER at 7 a.m., and was seen pretty much immediately. The concern was clear on my doctor's face -- I presented with fever, headache and neck pain. We had to rule out an uncommon but potentially dangerous side effect of the infusion: meningitis.

After I was given Percoset for the pain, I waited for my initial blood tests. The demented elderly woman in the next bed, who was restrained to her gurney, kept trying escape so she could meet her husband at 3 p.m. "He has a brain tumor, but I think he'll be ok," she kept saying.

I reassured her she wouldn't be late, and perhaps she would like to stay in bed for a few more minutes. I was having visions of her breaking a hip as she feebly launched herself out of the gurney.

"I think the nurse stole my handbag!" she replied. "Good thing she doesn't know I brought two!"

The doctor returned with good news -- the blood tests were clean. I was ready for pain medication and marching orders, but he shut that down. We still had to eliminate meningitis. Which meant a lumbar puncture, commonly known as a "spinal tap."

Unlike the eponymous movie, this experience was a lot less funny.

This was me on Percoset, prior to the first spinal tap:


I was told it's like an epidural, but without the pain relief at the end.

After the SEVENTH attempt, the doctor told me that due to my "physique" (i.e., my plus-size stature), he was having trouble getting the needle inserted correctly. We switched to a bigger needle, to no avail. He kept reiterating that my size was an issue. I had been understanding up until that point, but I suddenly yelled (whimpered, actually), "What do you do with your other fat patients?!"

On the tenth try, with my parents listening from outside the door, he finally did it. I felt triumphant. This is me, right after, looking triumphant:

Old motto: No spinal taps!
New motto: No more than 10 spinal taps in 2010!

After confirming I was meningitis-free, I was released with Percoset for the neck pain, and orders to follow up with my doctor. My parents whisked me off to New Jersey to recuperate.

However, recuperation was not in my near future. I woke up on Monday and felt funny. I spent that morning clutching my head in pain, crying, vomiting, then apologizing to my father for putting him through this. Every time I tried to sit down, I had to run back to the bathroom to throw up. I was so exhausted and could barely walk from the previous day's spinal taps -- (in fact, this was my back the next morning:

) that my father, brilliant man that he is, finally offered me a bucket so I could finally sit down.

"Vomit Bucket," as I came to call it, became the Wilson to my Tom Hanks in "Castaway." I finally collapsed on the couch, bucket in my lap, glad for the sweet release that a short nap brought me.

By Tuesday morning, following a sleepless night, I was dehydrated and in excruciating pain, and begging to back to the emergency room. However, I wouldn't make the trip without Vomit Bucket at my side.

I must have looked awful, because my arrival was like The Price is Right -- once the triage nurse saw me, she was like, "Come on down!" She asked about my pain level, on a scale of one to 10. I whispered, "Eleven."

I couldn't open my eyes.

I couldn't eat.

I couldn't drink.

Let just say it was somewhat unpleasant.

The neurology students stopped by to test me about 20 minutes after I received Dilaudid, a synthetic morphine. They asked me to count backwards from 100, in blocks of seven. My mother, clearly doubtful I could do it even when not drugged, said, "She's heavily medicated, can we wait a little while?"

After tests, tests and more tests, it was determined by my fantastic immunologist that my nurse had run my immunoglobulin infusion too quickly, which was causing severe migraine-like side effects. I was given intravenous anti-nausea medication, as well as the Dilaudid and saline to re-hydrate me.

I was prescribed bed rest and pain killers to take for another week. In addition, my doctor strongly suggested caffeine, which apparently works wonders for people with migraines. This led to interesting conversations in which my parents said things like, "C'mon, just one sip of Mountain Dew!", "I got you 64 ounces of Dunkin Donuts coffee...try to drink it all" and "Hey, Red Bull isn't that vile."

I was too tired to move, but too wired to sleep. So this is what I did for the next five days:

I am so grateful that my fantastic family was there to shepherd me through this awful experience. My mother never left my side, even when there was no chair for her to use at the emergency room. My father listened to me cry, told me it would be ok, and then uncomplainingly took away any box, bucket or bag in which I had thrown up. He was a trooper.

However, there is one acknowledgment I would be remiss to forget, a debt of gratitude so great I will never be able to repay it.

Vomit Bucket, I owe you one!

Gray Matter

I am feeling very restless tonight. It’s 2 a.m., and I just discovered several gray hairs (white, actually) when I was looking into the bathroom mirror. They were nestled at the hair line above my ear, just behind my bangs.

I was at the salon recently, getting a cut from Carlos. I always tell him, “Do whatever you want.” The first time I said this he broke out into a huge grin, and although he always does a fantastic job, I thought, Why is he so happy? What did I just agree to? There was no need to worry about Carlos, of course. But as he was snipping away this time, he paused, then shouted, “Look, you have a gray hair!”

I saw age 30 a couple years ago, but I had yet to see a gray hair. So I yelled, “Pull it! Pull it!” He wouldn’t do it, so I asked him to single it out so I could pull it myself. I think Carlos assumed I was having a fake meltdown, but I still believe a minor anxiety attack was the correct response. When I saw it was snow white, I was both horrified that he was right about its very existence, and relieved that it wasn’t dishwater gray. It also reminded me of my grandmother, Celia, whose snow white hair always looked so pretty, albeit perpetually in need of a slight trim.

I was hoping that Snow White was an anomaly. A single strand that peaked before its time. But after my experience this evening, I know it wasn’t.

Normally, I don’t think this would be hitting me so hard but about half an hour ago I finished “Still Alice,” by Lisa Genova, a novel about a woman’s rapid descent into early-onset Alzheimer’s. It was very moving but deeply depressing, and left me vowing that my next read would involve a Parisian police detective who solves a heist at a candy factory with the help of his friends, a pair of married chocolatiers. Or something similar.

The malaise caused by the book will pass, but something else is weighing on my mind tonight. My birthday is about 4 weeks away. I don’t particularly love birthdays, but this time of year also marks another anniversary – the onset of my immune system disorder, CVID. I will be celebrating by starting home care, which my insurance company just approved. A nurse will visit me every four weeks to administer my intravenous immunoglobulin treatment (IVIG), replacing my monthly trek to the infusion center at my immunologist’s office.

Intellectually, I know this is a great development. Going to the infusion center isn’t fun. I get there at 8:30 a.m. and am hooked up to my pre-meds (a cocktail of Tylenol, Benadryl and a steroid, to prevent reactions) by 9:15 a.m., and start my infusion at 10 a.m. I then spend 3 hours hooked up to the IVIG, during which time I sleep, due to the Benadryl. Afterwards, I trudge out, exhausted from the medication and the amount of liquid being pumped into me, and pour myself into a taxi so I can go home and sleep for the next four hours and gradually regain energy over the next couple of days.

At least if I get it at home I don’t have to leave, don’t have to wait for the nurses to attend to anyone else, and don’t have to worry that I won’t find a cab during the lunch rush.

The home care company called me several times. I have, thus far, spoken to an intake coordinator, a nurse and someone from the pharmacy department. They all asked me a myriad of questions, including my height, weight, medications, fruit intake, freckle-to-skin percentage and linen thread count. They also explained that I should expect an introductory package in a couple weeks, which would include basic supplies. Like an IV pole.

My very own IV pole.

Nothing screams, “Hey, I’m young, I don’t have gray hair and I’m available!” like your own IV pole. In fact, I may add it to my eHarmony profile.

It’s funny, because reading “Still Alice” reminded me that I am actually very lucky. My immune system deficiency isn’t fatal, although it does increase the risk of other illnesses. It will never impair my cognitive function. And by discovering it and receiving treatment, I am sick much less often than I ever was before.

But the last two years has seen my life change in many ways, confronting possibilities I never thought I would be considering at this age. I can’t believe I am old enough to have an IV pole, let alone a home health care worker. I’m a little worried someone will pick me up one day, drive me to a nursing home and park me in front of a television, where I will nap in a wheelchair and only wake up long enough to complain that the television is both too loud and not loud enough.

Unlikely, I know. But frankly, I was kind of hoping that if I had to have a lifelong illness that I would at least get to keep my hair color for a few more years.

Oh well. I guess that’s why they invented Garnier Nutrisse.

Four Score and 100 CCs Ago

Another month, another treatment.

Sigh.

Don’t get me wrong. I am grateful that my ITP is in remission (or, in solidarity with our economy, it’s in recession), but my CVID is not going anywhere, so I continue to get my IVIG infusions every 30 days.

I just started getting them from my immunologist again, now that my hematologist has released me back into the wild. At my first infusion following the conclusion of my recent platelet craziness, I was given Benadryl and…well, that’s it. I had been getting both Benadryl and a dosage of steroids as pre-meds. Now, I always get headaches and fatigue following infusions, but this last time was different. I thought I had the flu. I was cold, I was hot, I was nauseated, I thought my head was going to explode. In a word: unpleasant.

I called the infusion center and told them I wanted to go back to my old pre-medication combo. They agreed, thank goodness, and on Friday I’ll go in and hopefully come out with some headaches and the urge to crawl into bed, and nothing more.

So, in honor of Limerick Day, which ends at midnight tonight, I wrote this to explain my current state of mind:

There once was a lady from Edison,
Who dreaded taking her medicine.

She hid in her bed,

But eventually said,

"Will taking it make me feel better soon?"

So long, farewell!

My hematologist cleared me for take-off this past Friday – I won’t see him for another four months. According to my chart, “Nancy is doing well and looks like she is cured.”

I’m cured? Hallelujah!

It’s a very nice feeling, after more than 15 months of ongoing stress, to know that my ITP could be gone for good. And that if it does come back, we can do another four-week treatment of Rituxan with a reasonable expectation of success.

My hematologist gave me one last IVIG infusion before I start getting them at my immunologist’s office. I can’t lie – as fond as I am of the amazing nurses, it was a great feeling, settling in to the recliner and thinking, “One last time. I’m almost done!” Since my hypogammagloblulinemia is permanent, we’ll always have to boost my immune system with infusions, but that’s a lot less scary than my low platelet count was. Immune system deficiencies can have long-term consequences, but won’t send you to the hospital in a dramatic fashion.

I popped my customary pre-meds, Benadryl and Tylenol, around 9:30 a.m. By 10 a.m. I had already inflated my travel pillow, the Benadryl was in full effect, and I was ready to sit back, relax and nap during the next 3 hours of treatment.

Not so fast…

I had received an e-mail on Wednesday, informing me of an important departmental meeting at 10 a.m. on Friday that I needed to “make every effort to attend.” So I got a call-in number, dutifully dialed it at 9:58 a.m., and popped in my stereo headset so I could listen.

I heard most of it. Or, I thought I did, until I got to work that afternoon and asked what had happened during the last five minutes, when I was pretty sure I had already started sleeping. (My first clue was when I opened my eyes at 10:30 a.m. and the line was silent.) The more they filled me in, the more I realized I had probably heard the first 10 minutes, if that, and the last 20 minutes had floated along the edges of my consciousness. I had heard the meeting much like one sees the highway on a long drive – it was there, but you can’t really pick out anything specific afterwards.

Oh well, I tried. And at 10:30 a.m. I was still too groggy from Benadryl to think about anything. I just turned off my phone, adjusted my pillow, and dozed happily while the IV drip-drip-dripped away.

The best part?

In celebration of my final (for a while) hematology appointment, I was sent off with a prize – a Camouflage Barbie Band-Aid:

Jackpot!

À votre santé

Today was grim. Without going into too many details, my coworkers and I had a difficult day.

I kept hearing people say, “At least I have my health.”

I thought, thank goodness that’s true for me…today. My hematologist confirmed on Wednesday that my treatment worked, and that I could start seeing him annually after one more check-up in July. This means I’ll go back to monthly immunoglobulin treatments for my immune system disorder. I’m so relieved!

If I lost my job – and you never know, with the way things are looking – I would worry about money, just like everyone else. But I have to admit that right on the top of my list of concerns would be my health. Because I have learned that it’s precarious. I was unemployed once before and couldn’t afford both COBRA and my rent. So I decided to keep the roof over my head and look both ways a few times before crossing the street. If I’m out of work again I won’t have that choice. I’ll need health insurance to guarantee I have access to a lifesaving treatment that I can never stop taking.

However, at least my job isn’t making me sick. Somewhat related to my last post is a great interview by Dick Gordon on American Public Media’s The Story. He spoke with Carol Espen, a former aerobics instructor:

Back in the 1980's, an aerobics craze swept the country… Carol was in New York trying to make a living as an actress, but teaching dance classes on the side. Soon she was teaching aerobics, doing close to 23 classes a week. It didn't take long before Carol's feet started to hurt, and then her hips, but she kept on going because by then teaching aerobics was her career. It took her four years to admit she was in such pain she needed to see a doctor. At 44, she had her first hip replacement, then several years later, the other one. Many doctors today recommend low impact exercises. Carol joins many other victims of the aerobics craze who are now suffering for their enthusiasm.

As stressed as I get at my job, it will never precipitate my needing hip replacement surgery in my early 40s.

So that’s one thing to be happy about.

[My] Blood is Thicker than Water...Finally

A film was released recently that, as someone with a hematological disorder who also happened to be born on February 14th, I immediately recognized as my own personal biopic:

I haven't seen it, because I have a feeling that the storyline in my head is probably superior to the horror flick that they concocted. Does their movie have Paul Rudd as the valiant hematologist who saves my life and introduces me to my future husband, also played by Paul Rudd (as a totally separate character, because marrying your doctor is unethical)?

In any case, my real life hematologist -- unfortunately not Paul Rudd -- suggested a pretty serious treatment for my platelet disorder. I had four infusions over four weeks, and was told that I would know if it worked by early March.

And now I know...it worked!

I am so relieved and thrilled. And yet I feel a little unsettled. Like I don’t trust it. Because it has been a long year in which we’ve tried different treatments and my count has rarely been stable for more than a week or two. So even though my number is the highest it’s been since I was diagnosed, I think it will be a few months before I believe that this is a long-term solution.

At this time last year I had a platelet count of 4,000 and was flirting with the possibility that my next paper cut would send me to the hospital. Now, I am at an extraordinary 330,000 – chock full o’platelets, one might say – and I couldn’t be any happier.

In fact, you could punch me and cut me and I’d be just fine!

Please don’t, though.

Pretty in Pink

I had my final Rituxan infusion on Friday. I showed up at 8:30 a.m., which is a full hour earlier than I need to be at work. Considering I still go to work afterwards, it makes for a long day.

First, we take blood so they can run my platelet count. I am the world’s worst candidate for a hematological disorder – I have one vein, and it travels on a daily basis. Sometimes you can find it in my hand, sometimes it’s in my wrist. It doesn’t like my arms, however, so it’s been years since anyone has tried to take blood from anywhere but my hands.

Fact: The Red Cross once sent me home after I went to donate blood because they couldn’t find a vein.

It took three tries on Friday, and multiple jabs and pokes and ins-and-outs, before we located a “juicy” (their words, not mine) vein.

After we got the IV line set up, they gave me my pre-meds – Benadryl and Tylenol – in a very special cup. Nothing but the best for me:

And then I have about three hours while I wait for the infusion to drip, drip, drip its way into my system. I usually kill time by fielding calls from my parents to see if I’ve settled in, inflating my travel neck pillow, reading books and scanning the internet on my iPhone, and munching breakfast.

This lasts for about 8 minutes, until the Benadryl kicks in.

I spend the next two hours and fifty-two minutes drifting in and out of a nap, waking up every half hour when the nurses take my vitals.

I usually go with a bandage square and tape after we take the IV out. But this time I demanded something special for all my pain and suffering:

That’s right – a Hello Kitty Band-Aid. There are advantages to having a doctor in the pediatric hematology department. Who cares if the kids get their fun Band-Aids? I want one too!

On the bright side, no more Rituxan.

Unfortunately, my platelet levels are still hovering way below normal, so while we’re waiting for the Ritxuan to kick in, I was told to come back next week for an IVIG infusion. Sigh…

I think I’m going to demand another Hello Kitty Band-Aid.

TAXI!

Last night I dreamed that I had to go to a doctor’s appointment. I arrived at the office and before I entered, I realized that I had gone to the wrong doctor. The rest of the dream involved running around Manhattan to every different doctor I’ve ever had, figuring out I was supposed to see a different doctor, and frantically hailing cabs to go to what I thought was the right office. I never made it to the appointment, although I did find a taxi that had carpeted seats and a smoothie bar.

(Of course, this turned the whole nightmare into a fantasy, because I absolutely adore smoothies.)

I’ve had seven infusions since the end of November, when my platelets started taking a nosedive. Between the infusions and the weekly lab work it always feels like I either just came from the doctor or I’m getting ready to go back. Thankfully, I seem to be responding well to my new medication, so after my fourth (and final) dose tomorrow, I might have a respite before I go back to IVIG infusions on a monthly basis.

I was supposed to schedule a check-up with my primary care physician for mid-January, but that came and went without happening.

I cancelled an appointment with a dermatologist in December.

I think I really need to see a gastroenterologist, but I conveniently keep forgetting to ask for a referral.

And I mentioned to a coworker that I really want to go to an ophthalmologist to get fitted for contacts, and she asked why I hadn’t gone yet. I told her that with all these appointments, it was hard to schedule it. She was like, But it’s not like you couldn’t schedule it for next month, after all this is over. And she was right.

But the truth is, I don’t even want to think about another doctor right now.

Smoothies, on the other hand…