Veinless Wonder

Due to recent events, I feel the need to make those of you out there with "good veins" aware of your excellent fortune. First, I will define the term "good veins" to encompass those lovely visible (or at least palpable) bluish-greenish vessels that sometimes protrude, rope-like, along the arms of you lucky ducks. I never thought I'd envy anyone who looks like this:

 Courtesy of Wikipedia 

But look at that vasculature! I am jealous. Jealous enough to have wondered if starting a serious weightlifting regimen would help push my seemingly non-existent veins closer to the surface. You see, my veins are the shy, retiring type. The nurses look, they feel, they tourniquet, they hot-pack, they cut off my circulation with a blood pressure cuff until my arm turns blue, but still, the introverted buggers can't be easily found. For a girl who requires IVs/ blood draws at least 6 times a month, this is highly ironic. Case in point: one day I ended up being poked 7 times before the IV team (I like to think of them as a SWAT team for IV placements) was called. And after all that the IV was finally inserted in my most used vein, which I'd been trying to avoid all along as it was starting to develop scar tissue from the repeated punctures. Now, at the Wilmot Cancer Center, where I go for my treatments, you are allowed to leave IVs in for 72 hours maximum, assuming you prove yourself trustworthy enough to not inject IV drugs in to your accessed vein... I passed this test with flying colors by apparently being so naive about this possible use that I was looking around in desperate confusion asking, "what do you mean I need permission to leave it in? I promise to wrap it up and not get it wet or dirty or pulled out just please let's not do the great vein hunt all over again tomorrow!" The nurses thought this was cute and I could hear them retelling the story of how the thought of shooting anything into my IV "didn't even cross my mind" to my doctor - which made me seriously wonder how many people actually did think of this nefarious usage on their own.

And so the IV was left in along the inside edge of my right wrist for the three remaining days of my infusion. Over this period of time it proceeded to ache like crazy, presumably because it was in such a sensitive spot, and I was forced to mount feeble attempts at washing my hair left-handed since any movement of my thumb intensified the pain. As I have a fairly large amount of hair, this did not go well, and ultimately I was left with an unconditioned frizzy mess and a healthy regard for opposable digits.

Anyway, I do tell this rambling story for a reason and it's because I hope that maybe I can offer some tips for those of you who have also experienced the joys of hard-to-find veins. This is what seems to work for me:

1) Hydrate - drink lots of water starting the day before your anticipated needle stick. When your dehydrated your veins can shrink down on you a bit and become more difficult to locate. This is fairly common advice.

2) Cut down on salt - Have you ever felt puffy after eating too much chinese food? Yes? Well part of that awesome feeling is due to water retention in your tissues from the excess sodium in that tasty lo mein. I find that making sure I stay away from anything salty helps my veins to be more visible.

3) Exercise - if you can, squeeze in a workout the day of your blood draw or IV placement. Exercise causes your blood vessels to dilate and helps to bring once hidden veins to pop up. I find that I stay rosy-cheeked for at least a few hours after exercise and my veins seem to stay up too.

4) Use heat to your advantage - ask for a hot pack to help further dilate veins once you get to the location of your stick. Doctors offices and labs usually have these on hand. I find that running my arm/ hand under very warm water works even better than using a hot pack.

5) Speak up - if you have tricky veins, say so! My aforementioned experience was primarily a result of me being stubborn. I've drawn blood before and I really don't find needle sticks too alarming, so I'm a pretty good sport about being poked and prodded. I know it can be nerve-wracking to draw blood. You don't want to hurt the patient, you don't want to look bad, etc... so I joke and laugh about my silly, reticent veins, try after try. That is, until I see a needle wiggling around so aggressively that it pokes back up through my skin. I didn't mind the pain so much as I minded the unnatural sight, which proceeded to immediately break me out into a cold sweat. However, this experience did result in the Santa Bruise - which made me feel pretty special:

 

 Can you spot Old St. Nick? Complete with white beard and hair? 

So moral of the story: unless you want a festive contusion, tell the nurse/ phlebotomist that you have difficult veins. This generally results in them calling over one of their eerily skilled colleagues who seem to have a sixth sense for finding blood, which means less bruising and pain for you. As long as you're not mean about it. As in don't yell about "only an attending being allowed to put your IV in" like a woman near me did. In that case, I can't guarantee anything...

This post is dedicated to my boyfriend. Who kindly put up with me as I gleefully plotted out locations where I could theoretically draw blood from his nice bouncy veins and simply accepted this as normal behavior.

Return of the... blogger

Hello again all. As you may have noticed, I have been a bit neglectful of my blog recently. I apologize for my absence and will now proceed to place the blame squarely on my eyes. Suffice it to say that they took a turn for the worse for a long while. Doctors were visited, medicines were changed, and my eyes began a month or so of completely inconsistent behavior before finally beginning to calm down to their current state (which is actually pretty darn good). What did I do during my good spells you ask? Well, Christmas cookies, Star Wars I-VI, and Lord of the Rings may also have had something to do with that... I'm going to claim that this was all both necessary and good for the healing process because 1) thumbprint cookies make me happy, 2) Han Solo and Gollum make me happy, and we all know that being happy releases stress, which reduces inflammation, which is good for people who have too much of it in their eyes.

IVIG treatments, which I started just last month, also seem to be good for the eyes. It became quite clear that my previous combination of treatments was not working after a complete regression occurred after my prednisone was stopped, and so I decided to try “intravenous immunoglobulin G,” which is not a drug in the usual sense really, but actually a type of antibody. The antibody is collected from healthy donors (blood donors), and, well, no one is really sure exactly why it works for some autoimmune diseases. I'll discuss the possible mechanisms in one of my next posts. I've only had one cycle of treatments so far but almost immediately after, my eyes started to improve. I'm hopeful that this means that this is the medicine that will finally tip the balance in my favor. The only real side effect I've noticed so far are some pretty nasty, nausea-inducing headaches – unpleasant yes, but in my opinion, much more favorable than uncontrollable ocular inflammation. So we'll see how things go! I'm writing to you from the infusion room as I receive my second round of IVIG so hopefully next week I'll have some progress to report. 

Until then, I'm mighty thankful for the magic of Advil.

How much is that cow in the window?

My eyes have been worse lately. So today I'm going to follow the time honored tradition of sticking my head in the sand... and focus on something else. As I am best distracted when outraged, I've decided to tell you all about this article I read the other day, regarding the impending expiration of Lipitor's patent: http://today.msnbc.msn.com/id/45182184/ns/business-us_business/#.TrrGKXLZeuI. I felt a little bit like vomiting after reading it, so I suggest you sample the article for yourself with a mental barf-bag prepared. I didn't really know much about Lipitor prior to this, besides the fact that it's a cholesterol drug, but apparently Lipitor was a huge money-maker for it's developer (Pfizer). What's disturbing is the fact that this entire article reads kind of like a eulogy for some sort of mythological creature - which I guess in this case is a cash cow.

Rather than commenting on how “unleashing a wave of generics,” as they put it, might actually be a really good thing for all the people out there who have to pay for this medicine, the article only laments about the end of Lipitor's “fabled run,” and eagerly posits which new drugs could make as much money. Could it be Humira or Remicade? Drugs that are commonly used to treat rheumatoid arthritis? Or maybe it could be... an Alzheimer's drug! So many people are going to get Alzheimer's as the baby boomers age!

Does anyone else see anything wrong with this picture?

It disturbs me enough that pharmaceutical companies view patient populations as just money-making potential, waiting to be tapped. But to see journalists, who make no money off of drug sales, doing it as well is just downright frightening. Has viewing the medical/pharmaceutical industry as a profit machine become so pervasive in our society that no one will blink twice at considering a diabetes drug for how much money it will make rather than for how many lives it will improve or save? I guess the answer is yes. Obviously the authors of this article would be considered “business journalists” but it's a little bit disturbing if you can just throw the word “business” into your work title and it becomes immediately justifiable for you not to care about other human beings.

As far as Pfizer is concerned, now that their patent is up, they have apparently cut a deal with a generics manufacturer to withhold the sales of the generic version of Lipitor in the US. Just so they can squeeze every last penny out of US patients. You can read about this here: http://www.bloomberg.com/news/2011-11-08/pfizer-ranbaxy-sued-by-pharmacies-alleging-lipitor-price-fixing.html. I feel like the reason why pharmaceuticals feel like they can get away with tricks like this is precisely because the attitude that they deserve to be making billions of dollars off of sick people is just accepted as the way things are. But it is not the way things should be.

So today's blog post is dedicated to your health. May you never need the next "blockbuster" drug that these pharmaceuticals are developing, for they will certainly ask you to pay dearly for it. And then you'll have the pleasure of reading articles, such as the first one, celebrating the huge profits made off of your suffering and hard-earned money.

Ninth Circle, Antenora

I'm a little bit in love with Dr. Foster right now. I just had an excellent visit with him in Boston yesterday and I am so excited to be making progress! I hadn't seen Dr. Foster since starting my infusions and steroids so I really was anxious to hear what he thought about how I was doing.

Last time I was in for a visit, Dr. Foster was the picture of frustration. I was not responding to treatment and in fact, my eyes had gotten drastically worse. We tried giving me an emergency IV of steroids (to quickly calm down the inflammation) but it ended up not doing anything. It's pretty scary seeing your doctor bury his face in his hands after looking at you. You can't help but think that you must be the worst case he's ever seen or something. It didn't help that giant pictures of my tomato-red and generally horrible looking eyeballs were floating around on the huge computer monitor over Dr. Foster's shoulder as he did this. A reminder of how completely abnormal and well, diseased, my eyes looked. I promptly burst into tears.

The funny thing is, I knew exactly what Dr. Foster was going to say. I knew I was worse. I knew I would have to start taking prednisone daily, along with probably either methotrexate or cyclophosphamide (different immunosuppressants, since my current one wasn't working). I knew my eyes were very very inflamed. I guess it was just kind of unsettling to see my doctor look so upset about my particular case. I already had a rare disease, I didn't want to be further sorted into the “tough case” subset and unfortunately, that's exactly where I was.

But yesterday, Dr. Foster could not have looked more different. He was positively gleeful after looking me over. He declared that I was doing much better and responding so well after only a few months of treatment that even he was excited. I wanted to hug him, jump around the room, and possibly climb up on the exam chair and do a little dance in celebration. Luckily, I remembered social norms and settled for just smiling 'till my face hurt. Tough case to success story? I liked the sound of that. I flew out of Boston in a state of joy-induced delirium.

Science aside: Ever since this appointment, I have been having little fantasy-visions of my B cells getting chased down and destroyed while I stand by watching happily. One of the immunosuppressant medications I take is called rituximab. Rituximab goes after a protein called CD-20 and it is basically supposed to attack my B cells. B cells are cells of the immune system that are involved in making antibodies, among other things. These cells are supposed to be destroyed, fixed, or otherwise incapacitated if they act abnormal towards your own body. Since I am starting to get better with the addition of rituximab, this seems to suggest that something went wrong with this process and I have abnormal B cells running around, wreaking havoc. Of course, the immune system is really complicated and I am not a doctor and there is more to the story of my disease than just renegade B cells (you can read more about the “double hit hypothesis” here: http://www.oculist.net/downaton502/prof/ebook/duanes/pages/v5/v5c027.html). But for now, I'm going to imagine that hunting the little traitors down is the key to making me better and continue rooting for their destruction. Had they had souls, I'm sure Dante would have placed them in the second ring of the ninth circle of the Inferno - reserved for traitors to country. (My body = homeland for these guys therefore, to Antenora they go.)

But back to reality. Other good news from my Boston visit includes being given the green light to continue with my steroid taper. I've been dropping 5 mg each week and so I will officially be prednisone-free by the first week of December! 

Oh pemphigoid, I told you I'd kick your butt. Just you wait.

This post is dedicated to Dante Aligheri. Without whom I would not have known where exactly in the Inferno to place my misbehaving B cells so that divine justice could be properly enacted. I like to call this method of cheering myself up "Dante-vengeance."

Comic Relief

So the other day I realized that one of my medications was kind of humorously named. This is a picture of the prescription in question.

Note the name in bold: FML. For those of you unaware of the meaning of the abbreviation “FML,” it is commonly used to stand for “F--- my life.” In fact, there is an entire website dedicated to this usage (www.fmylife.com). Anyway, I just think it's kind of hilarious that I've been instructed to apply FML to both eyes, three times daily... It makes me smile whenever I use it.

Despite my use of pessimistically-named medications, life has actually been pretty good as of late. I just finished my last weekly chemotherapy treatment and according to my current protocol, I will only be receiving treatments once a month from now on! This is especially good news for logistical reasons; I am literally running out of veins to be used for infusions. We've used veins in my hands, my forearms, the crook of my elbow, my wrists... I need some time to heal up! Especially since the steroids I take diminish my wound-healing capabilities and cause me to bruise easily. As a result, all my needle sticks have left me with a patchwork of bruises on my arms. I look like someone let a five-year old tattoo me with splotches of blue, purple, and red. I personally think this is kind of funny, and I proudly show off my bruises as badges of honor. My boyfriend, however, thinks this is less funny, as I suppose it could also look like he beats me with a stick on the arms or something. In any case, it will be nice to give my arms some time to recover. It was getting difficult for the nurses to see behind all the black and blue.

Besides making me extra-fragile, I believe prednisone is also giving me food-related nightmares. Not the “oh my God a giant cheeseburger is chasing me” kind, but the “I just ate a carton of ice cream and now I have steroid-induced diabetes” kind. Maybe I should dress up as an overworked insulin molecule for Halloween! Get it? The insulin is “stressed” because it can't keep up with skyrocketing blood glucose levels? Well I certainly think it's frightening.

This post is dedicated to nerds. Viva la science!

You come here often?

Yesterday I had my fifth infusion. This means I only have one more weekly infusion to go before I can switch to a monthly schedule. Yay! This may sound odd, but I had a really good time during my treatment yesterday... which I suppose is saying something because during treatments you're basically just sitting still for six hours while they pump a poison into you.

I do have to admit that I've never really had a bad time during my infusions, and I credit the awesome nurses in the infusion room for this. They are hilarious, always upbeat, and always ready to help you with anything you need (water, a blanket, gossip). I don't know if any of you have ever had the chance to see a nurse in action, but it's kind of amazing. Sometimes I feel like I'm taking part in a wildlife study as I watch them zip around, like frantic birds in their natural habitat. My nurses can multitask like pros – prepping you for a blood draw while taking your vitals and somehow managing to carry on a conversation with you about politics through the whole thing. To me, a girl who can't even talk and type at the same time, this is beyond impressive. It also makes me feel quite lazy to be lounging around in a comfy chair while they do all this running around... but as I'm connected to an IV pole, I suppose it's not like I could keep up even if I tried.

But I've gotten sidetracked, because the point was that as fun as the nurses make the experience, sometimes your fellow patients are even more entertaining. Case in point, a sixty-something southern-born-and-bred retiree who plopped herself down in the infusion chair next to mine. I am going to call this patient Mrs. Bree. Yesterday, Mrs. Bree and I had quite the conversation. She likes to talk and I especially liked to listen because I was so in love with her Georgia drawl. Here is what I learned over the course of the day. Mrs. Bree loves clogs, her twenty year-old cat, her soon-to-be-retired navy officer husband, and Hugh Jackman. I think she loves Hugh Jackman most of all. I honestly have never seen anyone go so crazy over a Hollywood star before. Mr. Jackman happened to be a guest on Regis and Kelly that day, which as usual, was playing in the infusion room. As soon as they announced the guest, Mrs. Bree clapped both hands over her mouth, started kicking her feet up and down like an excited five year-old, and I think began to hyperventilate a little bit. She then proceeded to ask me and the man seated on my other side if we didn't think Jackman was just the kindest, sexiest, most talented man alive and then launched into a detailed account of why she thought he was so amazing. The poor guy next to me (and incidentally the only male in the room) looked bored at first, and then looked increasingly annoyed as the nurses were drawn into a discussion on the finer points of Hugh Jackman's facial hair.

Now I will admit, Hugh is a hot guy. But most people in Hollywood are attractive so I'm really not that impressed by you just being good looking if you're an actor. I do like him better than most I suppose, because he seems well-spoken, kind, and he has a really good voice (if you can sing you are instantly more attractive according to my logic). Still, I was unprepared for Mrs. Bree's reaction during his interview. She shushed us all urgently whenever Jackman was on screen. She wildly flailed every single one of her limbs in an attempt to shoo nurses from blocking her view of the TV. And she thought nothing of basically shoving aside the poor nurse who was, at that precise moment, attempting to take her IV out.

As crazy as I found Mrs. Bree's behavior, it was also kind of adorable. I'm not sure exactly what illness she has, but I do know it's a chronic and life-threatening autoimmune disease for which she will receive treatments for the rest of her life. It's nice to see that despite all her years of treatments and despite all the years ahead, she's still more gregarious and energetic than a teenage girl at a Robert Pattinson movie.

I wanted to mention this little experience because I feel like you get used to hearing only about how horrible chemotherapy is. But really, it's nice to sit and talk with the other patients in the room during treatments. As one other patient said later on in the day, “It's like we're all at a bar! We've each got our different cocktails – hey can I buy you a drink?” I found this to be a stunningly good comparison actually. Just like at a bar, you never know who you might run into or where the conversation might take you. In my case, I now know everything I could ever possibly want to know about clogs.

This post is dedicated to Hugh Jackman.

The Waiting Place

Today I have decided to rant about my eyes. They have been rebelling since last week and what I mean by this is that I kind of look like someone who's just had grapefruit juice thrown at their face. Ouch right? Well this is what it feels like too. Almost ALL THE TIME. I'm not sure if this is a sign that my treatment is not working, or maybe if it's just not working yet. I will have to ask my doctor about this at my next appointment and I guess switch to a different medicine if I need to.

Normally, I try to be positive about this and think, “well, at least I'm not dead, at least I'm not blind, at least I have all my limbs, etc.” But today I don't feel like being positive because I'm just downright annoyed. I miss having normal eyes that can see properly. I miss being able to read and type without having to strain and squint and look super awkward as I shove my face right on top of whatever I am trying to work on. But most of all, I miss being able to keep my eyes open. Honestly, no one ever thinks about how amazing it is that your eyes can self-lubricate so that you can walk around with the really delicate membrane exposed to all the world... but trust me, it's a miracle. My eyes are exceptionally dry at the moment, and though I try to solve this by using eye drops about every ten minutes, my eyes are also so inflamed that anything I add to them in an attempt to alleviate the dryness also irritates the crap out of them. It's pretty much a lose-lose situation.

As unpleasant as it is to be in pain, I think the real reason behind my foul mood is that I sometimes get tired of making plans and having them ruined because I am sick. For instance, my health problems have kept me delaying my plans for med school since, well 2007 really. It's 2011 now. That's three years I've lost. I guess it's not good to think about how behind on your life plans you're getting but sometimes I just can't help it. Normally, I try to cheer myself up by thinking “well, it's not your fault that you got sick,” but today, that doesn't really make me feel any better. I hate feeling like a bum and even more, I hate thinking that other people might look at me and think I'm just a lazy person that might just not have what it takes to be a doctor. 

I don't know if any of you have ever read “Oh the Places You'll Go!” by Dr. Seuss, but in the book, he describes a place called “The Waiting Place.” You can read the text of the book here (it's short, and I recommend it): http://www.teamhope.com/seuss.htm, but here is an excerpt:

The Waiting Place... for people just waiting.

Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting.

Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting. (Seuss, 1990).

I feel like I'm in the waiting place. Dr. Seuss forgot to include a line about the people who are waiting for their immune systems to stop attacking them so they can go back to driving and working and school... but it's ok Dr. Seuss. I still like you.

I hope that like Dr. Seuss says, “somehow [I'll] escape all that waiting and staying.” Here's to tomorrow and not giving up!

This post is dedicated to the magic of hair salons. I decided to get a long over-due haircut (2 years since my last one!) after writing this post and felt instantly better about everything. Do they infuse happiness into their fancy shampoos? My eyes might be hurting, but at least my hair looks pretty!