Begin Round 3

Hey Everybody,

So Round 3 of chemo starts tomorrow. This time we go back to the A-block regimen of drugs and it will definitely be a 5 day stay, unlike the pleasant surprise of 3 days for the B-block. I finally finished setting up my care calendar today so folks can sign up to bring me meal replacements for the filth that comes from the Emory cafeteria. (No wonder mummy had to pack my lunch everyday for me in elementary school!)

So the request for Atlanta helpers is that lunch while in hospital feed me and my parents and you (if you are free to dine in a hospital room), dinner in hospital is just me and you (again, if you don’t mind the romantic mood set by the churning infusion machine and fluorescent lights), and dinner for a few days after hospital for me my parents and you. In the calendar are a few ideas for stuff that I like and some dietary limitations, but really I like your favorite/best recipes and am not that picky.

As for visitors this round, since it seems to be a bit more routine (knock wood) I will be able to have a few visitors. We can do laps around the unit while dragging my poison pole with me! Just text or email me and I’ll communicate with you about how it’s going and if I have time/energy to see you.

It’s so rough being a celebrity…

===================================
HELPER LOGON
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The HELPER logon is used by family and friends
that would like to sign-up to help a loved one.

To access Bryan Raybon’s personal CareCalendar site,
visit http://www.carecalendar.org/logon/69676 and enter
the following information in the appropriate spaces:

CALENDAR ID : 69676
SECURITY CODE : 7103

Greetings from the Nadir Point

Hey Everybody,

Well, I think I’ve learned what they meant by Round 2 of chemo being “harder.” I mean, it’s not been the end of the world and I don’t want to whine too much, but I’ve definitely done a few things in my lifetime that were a bit more fun. Who am I kidding, I love to whine! Here’s the skinny: headaches every day, two platelet infusions, an allergic reaction to the first round of platelets (itchy rash all over, stuffy nose, a big goopy eye booger they had to wipe out with dry gauze, two nurses and a pregnant doctor at the end of their day asking their last remaining patient over and over if I was better yet so they could go home), fairly intense back pain all day yesterday from the neulasta shot I got in my belly last week, oxycodone intoxication (which was actually really unpleasant, I don’t get how people get addicted to that horrible feeling), fatigue all day all week, and a five hour infusion of whole blood scheduled for tomorrow morning which hopefully lasts less than 10 hours.

So nadir point. Antonym to zenith point.

Is that what this is? I dunno, I’ve had some pretty good zenith points: I’ve been in love, I’ve been to (a lot of) college, I’ve got a fabulous career and a job that I love, I’ve been to Europe, I know really good food, good wine, good beer, good music, and can identify with the undouchey aspects of “Stuff White People Like”, I’ve got tons of family and friends who just won’t let a hot minute go by without telling me they love and care for me, I’ve got great hair, good bone structure, and a reasonably good shoe collection. I even look good with a bald head. So cancer and her jerky side effects? Whatever… bring it bitch!

(This “you-go-girl” moment was brought to you by hours and hours alone with a lot of Buddhist/Spiritual/Self-help books and videos scattered about, please don’t feed the ego…)

Anyway, I’ll think I’ll just be happy when I get out of here and finally re-join the world of the living. I’ve completely sequestered myself indoors all week so that I “stay safe” from all of you “dangerous people” out there trying to give me your germs and make things worse for me. I’m embracing this time alone though (between your delightfully endless phone calls, texts, facebooks, and emails) as it has given me a little time to break through my denial and seriously start to consider what is the meaning of all of this. What is the experience of sickness teaching me about the concepts of wellness, strength, and weakness? How are my body and mind connected? How will my self-concept change to include all of these low moments and strengthen my high moments?

When I start to think outside of this moment I’m in right now I get pretty scared and angry. The literature says the next few months are going to suck for me and it’s hard to see past them. It makes me want to change my mood immediately and the lack of satisfying options I have for that these days frustrates me. As I have come into my adulthood I have often thought of myself as a problem solver, a strong healer, here to make things better for others. Although I have tried to accept that I am a fallible human being, I’m pretty confident that I’m pretty good. But what if I’m actually weak and too sick to really do anybody any good? Will that stop me from being me? Is it even possible to turn my strengths as a healer on myself? Or better to trust others to be as responsible with me as I would be… with me?

As I type those things I notice myself reaching for a quip or a joke or try to find some way to denigrate myself as overly serious. It’s because I’m uncomfortable with weakness and that’s what makes cancer frightening for me. They have drugs and treatment protocols for all of these silly symptoms and side-effects, but what if I’m too weak to handle all of this? What I’m not smart enough or strong enough make meaning out of this?

When I started writing this blog I was worried about sharing too many of the details of my life, that I’d be giving away my privacy. I’ve probably done a little of that, I mean you know about my underwear and have seen me with a needle stuck in my chest which is fine I guess. I also want people that I love to have a detailed reporting of my progress without having to tell everyone the whole story. Check.

I think what I’m really trying to do here though is to tell a story that connects to the way we as humans process big events as they correlate to our own individual life experience. I’ve not had much in the way of suffering; no trauma, abuse, oppression, discrimination, poverty, addiction, or depression in my life so the way that I’m doing cancer as a middle-class white guy has got to be easier than if I had had any of those things. But maybe it’s not about easier or harder, smart or dumb, good or bad, right or wrong. Maybe living through the sensations of pain I felt yesterday will let me connect in a richer more honest way to someone else who has had those other experiences, separate from or in addition to cancer. Maybe I can stop judging myself and others for living in a way that makes sense… even if it’s not always graceful. Maybe I won’t lose my compassion for others because “I’ve got it worse than you” but maybe compassion will get stronger and honesty will become more valuable than grace.

G’nite folks.

I’m sorry. I can’t. Don’t hate me.

Hey Everybody,

So I’m sick “on paper” even though I feel (mostly) fine; the paper being the post-it that has my lab results on it. Here is a little primer in hematology and lab results: Platelets clot your blood and promote healing/homeostasis, white cells fight infection/foreign bodies, and red cells carry oxygen around the body and give you energy to function. Yesterday my platelets were at 30 (normal range is 150-400), white cells are at 2.8 (normal range is 4.4-9.0), and red cells at 3.8 (normal range is 4.63-6.08). Tomorrow morning when I get my next labs these numbers will likely all be lower. Chemotherapy is designed to strategically murder the cancerous blood cells in my body but it takes out many of the healthy ones at the same time, which is why my blood counts are low. I am in the period of time from the start of my last chemo treatment (day 7-14) when my blood counts are going to bottom out, so these numbers will continue to drop over the next several days and leave me open to hideous bruising, all kinds of nasty infection, and serious fatigue.

All of that blood talk to say, my immune system is low right now and still moving downward. It will likely stay there until I’m able to rebound late next week. The fact that I feel mostly fine right now (just a little bit tired due to my low red cell count… I got a little winded going to the mailbox earlier) makes this very annoying because I’m a pretty social guy and it means I have to say “no” a lot. I love my friends, everybody is so great and wonderful and supportive and whatever, but (even though some people may not believe me) I hate to say no all the time. It’s really hard for me to do since I’m still kindof in denial that I’m sick, but everytime someone says “I’d love to come visit. Can you come out and play? When can I see you?” it forces me to bargain with my health. “Well, I can do that, I can go there, I can see them if they aren’t sick, I’ll just wear a facemask and carry hand santizer” is how the conversation goes in my head and eventually this will become a very risky negotiation to have.

My family is really concerned that I’m going to take unnecessary risks with this denial driven line of thinking and are doing their best to sit on me so that I don’t. This is actually a hard job for them to have because it makes my inner Veruca Salt come out, and when I don’t get my way I can be pretty nasty. I would not want to be on the receiving end of my bitchy defiant attitude so I guess I’m lucky they haven’t wrapped my face and wrists with duct tape. Although, I suppose Lady Ativan is a chemical restraint that doesn’t sting as much as duct tape… she keeps Veruca quiet… usually… mostly…

I never realized how many people I saw normally when I was just going about my everyday life before getting sick. All of these requests for visits seem almost forced because I never had people asking to visit me before, but it’s probably because I would just see you out normally at work or the gym or the store or the bar or at Glee or whatever, so a special visit wasn’t ever necessary. Don’t get me wrong, I don’t want to stop seeing people or stop getting asked out, but if folks could keep it between day 14-21 it would make it a lot easier for me to protect myself. I still may have to say no and maybe this will actually motivate me to put together that care calendar thing that I’ve clearly been putting off. Meh.

Speaking of putting things off, I will have my first platelet transfusion either tomorrow or Monday depending on my lab results. Transfusions occur when your platelets are less than 20. Vomit. I’d love to put that off. What exactly is the profile of a platelet donor anyway? I mean, you can go to the Red Cross and see the requirements for it, but what is the psychological profile of a person that want to donate part of their whole blood every 7 days for $20? I picture freegans and homeless people and heroin addicts… but maybe it’s just poor preppy college students and bored pretty housewives with sensible shoes and “say-something” hats doing community service. Anyway, I wonder if I will develop any vampiric traits after this happens… and which vampire mythology those traits will come from. My choice would be True Blood or Buffy the Vampire Slayer since they have super-strength and are all broody and dark and sexy. I think I’d rather be staked in the heart than be one of those glittering Degrassi High after-school special Twilight vampires but I guess I’ll find out soon enough though.

Ugh. Bummer of a post. Sorry guys, I’ll do better next time.

I have a match!

Hey everybody,

I just found out that my brother is a perfect 10 of 10 match for my bone marrow! Woo hoo! I totally don’t anticipate needing it because Plan A is to use my own bone marrow for stem cell transplant and Plan A is going to work so Plan A all we are going to need to be done with this cancer bullshit. HOWEVER, it is great to know that we have this in common and he has graciously agreed to loan me a cup full of his bone marrow if I need it for Plan B! (as in, the second plan, not the abortion pill… just clarifying that…) He has agreed to keep it safe and clean for me, at least through the end of the summer when I may need it. Guess I owe him a nice dinner out or perhaps a loan on my Ferragamos for that! 🙂

To all of you who signed up with Be The Match, and especially Claudia Becerra, Dedra Cochran, and Kate Bass who arranged the bone marrow drives at my agency and at AID Gwinnett, a HUGE thank you. I can’t imagine what it would be like not to have the option for a perfect match on the table and am grateful to each of you who stepped up to the plate and offered to do this amazing thing for me. I guess I just lead a charmed life with all of these options! Filling up the national registry with donors increases the size of the pool that others with blood cancer can draw from so others can be lucky like me! Click here to donate for others that don’t have Alyssa Milano and the Power of 3 looking out for them – www.marrow.org

Yes, lucky lucky lucky cancer patient I am. Lucky is my word du jour in fact. Lucky, like that Britney Spears video where she plays a sad old Hollywood star. Lucky like those jeans I used to love until they started selling them at Costco. Lucky unlike Charlie Sheen’s psychiatrist… having to treat warlock tiger blood cancer and whatnot.

Alright, bye now!

Chemo Round 2 (sorry I’m skipping ahead!)

Hey Everybody,

As you may have seen on Facebook, I was not a happy camper on Friday. I’ve sailed through most of this chemo relatively unscathed until now (no nausea, pain, vomiting, no edema this time, or even much fatigue), but that all changed on Friday when there was some drama with my port malfunctioning and it turned me into a big baby documenting the event with unnecessarily provocative photography. Gotta say, sorry about that… I was upset and probably should have waited to share that blessed event until this opt-in blog rather than blasting that pathetic image all over Facebook. Oops.

Anyway, here’s what happened. I started round 2 of chemotherapy on Thursday and was forewarned it will be “harder” than round 1, a statement that holds little meaning for me which I patently ignored because I’m such a superstar and chemo doesn’t phase me. La, la, la… check-in, plug-in, start the routine peeing every 20 minutes. Yeah, “routine.” It seems that pretending to be an old pro at this isn’t exactly the way I should approach this, eh? Shit only seems to go downhill after acting casual, right? So Friday morning I woke up with a little bit of fluid on my shirt in the area over my port; luckily it was just some raggedy Old Navy t-shirt and not the couture I usually wear, no big deal right? When the nurse started exploring she discovered that one of the two lumens (chambers that can be accessed for either putting fluid into or pulling out of my heart) on my port was leaking fluid and that there was some swelling in my chest. Thankfully this lumen was just being used for sodium bicarbonate (baking soda solution) rather than the other one which was pumping Methotrexate (chemotherapy), so anything that had leaked was harmless. The nurse later told me that it would probably have been fine if either had leaked because they give Methotrexate orally…. but better that it was just sodium bicarb.

So to start exploring the repair they first had to start an IV in my arm so they could continue giving chemo, because we can’t go a single hot minute in the hospital without injecting poison into my blood, but it took them 3 times with a big needle in both forearms and hurt like a muthafucka. Owwie! I think I crushed my poor mother’s hand, which is totally her fault for offering it in the first place. Now, I had my ear pierced twice when I was in college by some dumbass at a piercing shop who set up at table on campus but it was nothing like this. (PS: stop judging me for being a douchebag, I was young and dumb… and I have cancer… rewd)

As if step one wasn’t enough, it’s time to dress me in my hospital burka and take me down to radiology. Please allow me to describe: yellow paper facemask that smells like a tongue depressor, a hospital gown two sizes too large that accommodates the line in my arm (and perhaps a second much fatter person), a “warm blanket” that was meant to make me feel better but really just made me hot and feel like a sick person that needed covering up, old man slippers, and eyeglasses since the Cyterabine chemo drug on this round of treatment makes my tears toxic and I can’t wear contacts. I mean, I kindof like my glasses, but I usually only wear them around the house and just want to complain and whine about the whole get-up… so throw them in for good measure. The only thing uncovered was my newly shorn head which I am still not used to and totally screams “cancer patient” to anyone who walks by no matter what anyone says about “a lot of men are rockin a bald head these days.” I guess my exposed head technically disqualifies this as a true burka, but whatever, the rest of me is fully covered and I’ll warble if I want to.

So we get to radiology imaging for dye testing to diagnose the problem. Once I was there the nurse practitioner started saying things like “Well, if it’s broken then we have to replace it, but we can’t do that until Monday since you had late breakfast this morning and can’t be put under sedation until 4:30. But if it’s just a clot then we can clear it. Your nurses should have told us that you ate before you came down because we just can’t do anything until Monday if it needs replacing.”

And then the queen came out.

I replied in the most patiently demanding shriek I could muster: “But, but, but, I can’t delay my chemo! They said if they give it to me in my arm that my veins may collapse! My doctor is the medical director at Winship and if I need a new port then she will make it happen today! I don’t care if you have to stay late or get the on-call team to do it! Let me get her on the phone! And don’t talk about my nurses like that, they are angels and I heard them tell you about my food intake so don’t blame them! And I don’t want a second scar from a second port! You have to just fix it! Please just fix it! And make that beeping noise stop, it’s driving me crazy! Can I have drugs please!?” Yes, those are exclamation points at the end of each sentence.

Roll a few angry tears.

The gravity of what is happening, combined with my totally unfashionable journey down from the unit, is starting to set in and really piss me off. I may actually have to have a second surgery. I may actually have a second scar on my chest. I may actually have to delay chemo for a few days, which could actually be a really bad thing for my treatment outcome. I may actually have to cut this bitch if she doesn’t make that goddamn beeping noise stop. (There was some alarm that blared for fully 30 minutes because of a malfunction with the door… ok it might have only been 10 minutes… whatever, the timing for this nuisance was definitely wrong). I suppose I am technically being treated as a sick person because I actually am a sick person, but this scene totally doesn’t match my idea of myself and it pisses me off. This is SO not my life. I am not sick, I don’t dress sick, I go to places where sick people are as a provider not as a patient. I fucking hate this. Get. Me. Out. Of. HERE!!!

Alright, calm down Mary, get hold of yourself.

“Can you bring me my Deepak Chopra book and headphones please?” I ask of my parents, hoping to find some holistic way of calming myself since apparently that nurse is planning to take a hundred years getting my ativan.

“Sure things sweetie, we’ll go back up to the unit and see if the nurses up there can do anything to speed this along too. Don’t worry honey,” my mom says, doing her best to hold it together. This moment is very similar to the mood of the post-op room after I got the port installed in the first place, which is to say not exactly graceful. (remember, “get the fuck away from me bitch-nurse, I don’t even know you, I can’t even see you”) The look on my parents’ face was similarly calm/scared and carefully trying not to spook the angry queen in the sick person’s chair and incur his wrath.

It is at this moment that I decide to broadcast my misery on Facebook. I am sitting in this ugly chair in this horrible room with this annoying beeping noise with no drugs and no tunes trying to digest what could be terrible news, and I look pathetic. Wah! Facebook to the rescue though, all 15 comments were totally supportive and made me feel loved and stroked my need for whiny baby attention. So thank you for being a friend… a Facebook friend!

After what felt like a hundred years (again, probably 10 minutes) the nurse brought me a thimble full of versed (the strongest benzo known to man!) and my parents finally brought my headphones. Then they wheeled me back to the imaging room and put me on a table underneath a giant machine. The nurses in the imaging room were much nicer than in the holding area and were pretty low-key, I guess it helped that they’re about to be off for the weekend and weren’t privy to the screeching I did earlier. Then Jo from the Facts of Life showed up in her dinosaur print scrubs and introduced herself “Hi, I’m Dr. Polniaczek I’ll be checking you out here sweetie.” I’m always happy when “the family” shows up to treat me. It also helps that she is also pretty low-key.

So they insert some dye into the port and start positioning the machine over my chest, looking for the right angle to observe what is going on with it. I can’t blame them for taking their time finding the angle, I’m very fussy at a photo shoot. “Ah hah! There it is, it’s just a clot, we can fix this with a 4 hour infusion of TPA and get you back up to the unit in no time.” said Jo. TPA: thrombolytic agent, clot-busting drug for patients having a heart attack or stroke.

Thank you Jesus! Thank you Buddah! Thank you Allah! Thank you Madonna!

Two and a half hours later Jo comes back to check my progress and we get “good blood return” from the port, which means they can push the TPA infusion faster and get me “home” sooner. Woo hoo! I have never been so excited to get back to a small hospital room where they give you fluid to make you pee into a bucket every 20 minutes, measure your urine pH, feed you terrible food, put chemical warfare directly into your heart, poke and prod at you all night, and make you put eye drops in your eyes at 3:00am! Home sweet home!

All things considered, the rest of my stay was pretty uneventful. I didn’t have any allergic reactions, no nausea, vomiting, diarrhea, or pain. I had several friends bring me wonderful food: Gena Berry of course brought several beautifully prepared chemo-friendly dishes designed (very effectively!) to counteract the metallic flavor I’ve been having, Scot Reynolds and Jeff Rakofsky brought me some divine shrimp creole and corn bread, and Chris Ethridge brought me the best burger known to mankind: the Holeman and Finch burger with homemade ketchup! Between my wonderful friends and what my parents brought I didn’t have to eat one single poisonous Emory meal the whole time I was there! I will definitely be putting out that call again! Beyond that, they even let me out for thirty whole minutes on Saturday and then discharged me on Sunday, a day and a half earlier than I was expecting! The worst part was being sleep deprived for three nights which I totally caught up on Monday when I slept for 22 hours.

Alright now, I skipped the part in between first and second round of treatment about my sister and brother-in-law coming for a visit (Which was great! Love them! Fabulous people!) and the part where I shaved my head, which was kindof emotional. I’m a little far from those events now, so briefly… My hair started falling out in big clumps on Friday 3/4/11 and was leaving a big mess all over my shower and my bed. By Saturday I was completely over it and called my friends Brent Wilson and Jon Yi to shave it off for me. It was kindof a fun/surreal party that ended in delicious pizza from Antico and a whole new appreciation for skin-care products. My hair continues to fall out in smaller pieces leaving trails of no growth on the top of my head, a completely beard-free face, patches on my chest, and the look of a 12-year-old boy further south. (well… I mean… not exactly a 12-year-old… err… nevermind…) Woo hoo! It would cost hundreds of dollars in a salon to be this smooth and all I had to do was get cancer and chemo! What a savings!

Alright, so I think I’m finally caught up! Enjoy!

Hey Atlanta Friends…

Alright, to all of you who have said to me “let me know if there is anything I can do,” over the past few weeks, I’m placing an order. Hospital food is foul and I plan to refuse all meals when I start this next hospitalization tomorrow. I’d rather eat the chemo straight from the bag than suffer another salt-free protein substance smothered in gravy product with steam-raped former veggies as a meal. It’s a waste and I wonder if I could save my insurance company some money by refusing food. There is a Starbucks in the hospital for coffee, student center for meals on days that I’m unplugged, and I plan to bring fruit, cereal, and some snack food that will supplement breakfast and odd times. I anticipate needing about 10 tasty and creative meals delivered to my short list of visitors between Thursday 3/10 – Tuesday 3/15. I narcissistically imagine that there will be a very long list of people volunteering and I promise you will each get your turn since there are a lot of days that I’ll be spending in the hospital this year… so fear not dear friends, I will have an appointment book and waiting list at the ready.

Yeah, so I said delivered to my short list. You caught that did you?. Since this will be a more aggressive arm of treatment than the first round I think I am going to limit my herd of visitors to a very short list of my parents and a few friends. The parade of visitors last time was nice, but a little bit overwhelming at times. If you’re on the list then you have already been informed, if you aren’t then I’m sorry you didn’t make the cut this time. Love ya, mean it, see ya when I’m out of the hospital and well enough for visitation.

Food restrictions: no sushi, no cheese with mold, no fruit without a peal on it, no booze. 😦 Also, I don’t eat fast food.
Favorite foods: Mediterranean, Mexican, Funky American, Southern Comfort, Fresh fruit/veg
Favorite places: Alon’s, Doc Chey, Fellini’s, Willy’s, MetroFresh, SuperPan, Antico Pizza, Holeman & Finch, Empire State South, Iberian Pig

Michael Baker and Heather Wademan will be making a care calendar that I’ll post on here once it’s designed that might make this easier, but for now if you are interested in fulfilling this ridiculous request of mine you can send me an email with your date/time availability at bryanraybon@yahoo.com or post a comment on the blog. In fact, I encourage you to comment on this post anyway with rolling eyes, exasperated teeth sucking sounds, and commentary on my bougie requests. When you win a food delivery slot I will let you know who the contact person is to for you to make the drop and they will complete the job up to my hospital room. You may be able to meet them at the hospital itself or at their home/offices in midtown, whichever is more convenient for you both.

I can’t believe I’m actually posting this, but here goes… please don’t unsubscribe or stop reading after this. I have cancer ya know and can’t be held responsible for my actions. 🙂

Free at last, free at last…

I’ve been so covered up in love and well wishes and support these days that it’s given me a case of the lazies. I guess I get this 6 month cancer sabbatical to do whatever I want and from the way it looks what I want to do is eat Snickers bites, make high-fat homemade ice cream, moisturize my newly bald head, and be lavished with fawning attention. Seriously, I’ve been posting funny little quips to Facebook since 2008 and have never gotten more than a few comments, so having my phone ding every 15 seconds with a “lookin good!” or “glad you’re so well!” comment after posting a few posed and touched up photos in homage to my hair makes me feel very popular. I just hope I can stay the same humble, grounded, balanced local celebrity I’ve always been and not turn into some narcissistic “I have cancer look at me” attention whore. That would be tacky. I think. Maybe.

(Smiles. Waves. Smiles.)

So they unhook me from that coatrack-looking-poison-giving-bitch Brenda, pack up my biopsy wound (which I refer to as my vagina, much to my mother’s horror, because of how the skin looks around it), and tell me to get the hell out of Emory and not come back for 2 weeks. Great! Fine! I’m ready to be out of there anyway! Peace out bitches! I’m ready to go home and sleep in my normal 700 thread count sheets (ok, normal for a princess), eat normal food (well, have my fabulous friend Chef Gena Berry cook beautiful food for me), sit in flattering lighting, and smell my home-smell (not that chemically antiseptic hospital smell!). I’m ready to be away from poking and prodding nurses who want to take my vital signs every few hours, give me wee fistfulls of pills to take, and hook me up to toxic chemicals. I’m especially ready to start peeing into a toilet instead of a plastic container that is measured, recorded, and has to be emptied every few hours! Yup folks… first there was shit talk and now there is pee talk. Classy.

So they were giving me continuous fluid the whole time I was there and I was drinking tons of water to get rid of the metallic taste in my mouth, so of course I was peeing every 20 minutes. I have to say it was a little bit humiliating to have to ask for a second container to fill. It was also less than delightful to have to ask whichever nurse or tech who came into the room to “please empty my urine buckets if you wouldn’t mind, I’ve filled them.” Most underwhelming of all was to learn that my urine is toxic waste and had to be handled with care, so these nurses/techs had to armor up when doing this job. I can’t share a bathroom with anyone for awhile because of the aerosol effect of the chemo in my urine. Not even at home. Gross.

So anyway, home was like heaven and I was glad to be there. I was also glad to send away each and every visitor so I could finally have some privacy! I know everyone loves me and wants to care for me and that’s great and all… but in my normal life I just like to sit around by myself in my place sometimes. Alone. WIth nobody. No visitors. Sometimes naked even. You just can’t do that with a lot of people around and it was really getting on my nerves. Ahhh… woo sah…

“Alright, now that you’ve had your few minutes of privacy let’s get back to work, we’ve got wound care to attend to!”

OMG my parents were so excited about wound care! When we discovered that this foul, leaky, biopsy wound needed serious attention and they finally had a concrete project to work on, mom and dad sprang into action! Seriously, there was a wooshing noise and everything! That first night I was at home from the hospital my desk was suddenly littered with a huge box of rubber gloves, face masks, wound wash saline, tape, bandages, gauze, and of course a cornucopia of medications to take. Especially oxycodone, since clearly this minor surgery I was meant to have twice/day for the next week was going to hurt like hell and it would be criminal to feel any pain. I don’t mean that to sound unkind, I’m really very grateful that they were there and willing to do all that they did, but the whole thing just kinda creeped me out a bit. Let me explain the process:

1.) Patient takes 1-2 oxycodone and waits 30 minutes for them to kick in. Drug addict.
2.) Shower and wash nasty, oozing, misplaced vaginal opening with soap and water. Gross.
3.) Lay back on plastic sheet/sterile area on my bed that mom prepared while she and dad glove up and mask up.
4.) Strategically place towel over man-area, exposing only the upper groin area, revealing the smallest possible part of an area that has been carefully hidden from parents since diapers. Fabulous.
5.) Dad squirts saline into the wound, mom swabs it out, dad squirts again and dries it, mom packs medicated gauze into the gaping hole in patient’s goin, applies neosporin. Not humiliating at all. Nope. Not even a little bit.
6.) Patient ignores accidental stray fingers, focuses on text messaging, Facebook, phone calls, the ceiling, Sarah Palin, ANYTHING.
7.) All involved laugh uncomfortably.
8.) Patient is bandaged up and sits still for several minutes, remains in towel, mentally as far far far away from the experience as possible.
9.) Repeat twice/day for a week until parents leave and close male physician friend can finally take over.

(Shudder!)

Good bye dignity. Good bye privacy. Good bye remaining thoughts of self as sexy. Hello cadaver! I mean, I’m just a patient now so the body is only there to be medicated and poked at now right? Surrender to the treatment; you need it to get better even though you never felt sick in the first place!

(Aaack!)

Again I don’t want to be unkind because all of my caregivers (especially my parents!) are doing their best to have good humor and give me as much dignity as possible, and they are doing a really great job; but the process is all just so dehumanizing. Or maybe it isn’t. Maybe it’s deeply human and the lesson here is that our bodies are just not that special and don’t deserve all of the hoopla we go through to achieve modesty. I dunno, I’m just very very very glad to be writing this today, not needing that level of care anymore.

(Shudder!)

Ok, follow up care. In between these 5 day inpatient hospitalizations there are 2 week periods of rest when I am meant to be “bouncing back” from chemotherapy. During this time I am meant to go in to the outpatient cancer center for follow up care to check labs, see the PA, see the MD, see the transplant nurse, to get human growth hormone injections (Neulasta?) to build up the stem cells in my bone marrow, to get an additional infusion of vickychristinabarcelona, and for them to tell me that I need to isolate myself away from germs and infection. This also gives us something concrete to do while I’m busy not working my usual 50-60 hours/week and trying to have a social life. Super fun. Not really.

Ok, I do mean for this next part to be unkind, so brace yourself boo.

Why oh why must this clinic be filled with sickly looking ugly old people? I mean really, this is Emory right? I’m at the bloody Gucci of cancer centers of the south, is it too much to ask that people have some style? Don’t get me wrong I’m definitely down with “the people” and don’t mind that people look or dress any old way when I’m a healthcare provider in the emergency room at my my ghetto-ass hospital or at my outpatient clinic, but when I’m a patient I want to be surrounded by my peers. I want people to dress cute. I want to see good hair, or at least good hats. I want people to smile… or at least give a good Zoolander blue steele. I want people to walk like they’re on a runway, not shuffle with their heads down sighing heavily. I don’t ever want to see an embroidered sweater with a ceramic broach pinned on it. I don’t ever want to see a grown man walking around in stock car racing themed pajama pants in public. I don’t ever want to see a Members Only jacket worn without any sense of irony. I know it’s cancer people, but it’s fucking unnecessarily depressing. Come on!

(Smiles. Waves. Smiles.)

Whew! Ok, I know that makes me a total asshole, but I’m all about honesty here and it had to be said. If I’m gonna keep my head up, my face moisturized, and my clothes cute for everybody else I don’t think it’s too much to ask the other patients to do me the same courtesy. I don’t want people to look at me and think “Oh how sad, he has cancer AND he looks a hot mess.” That feels like schtick to me and if there is anything that Tabatha Coffey’s Salon Makeover has taught me, schtick is bad there are much more positive ways to get attention and be ok.

Such an ass. Such an ass. Such an ass. I’m definitely going to hell…. but not for a really really long time from now. After I kick cancer’s ass. Right.

(Smiles. Waves. Smiles.)

Ok dears, I’m done with this for today. Time to do some yoga and maybe read a little Deepak Chopra to cleanse my aura. Namaste!

Chemo Round 1, Part 2

So I was informed today that sometimes the irreverent/sexy/flirty tone I’m taking in this blog may be a bit jarring to some readers who aren’t used to knowing me in that way and that perhaps I could tone it down out of respect for those readers. I have to say that I found that feedback rather jarring myself as, here in America, the decision to access this blog is totally opt-in and if something is offensive that gives the reader full license to opt-out. Reading my little old blog is not compulsory, I don’t even have to know about it, and if you choose to skip it I promise you it won’t hurt my feelings. And as I stated in my previous post, there is a much cleaner and more concise version of this story that can be read at my parents’ CaringBridge site – http://www.caringbridge.org/visit/bryanraybon . So while I have the upmost respect for all of my readers and am so grateful and humbled by the tidal wave of well-wishes, prayers, positive thoughts, and concerns I am getting poured over me from people across the United States, people I have never met and may never meet… I would respectfully invite you to opt-out of continuing this read if it’s too x-rated or if you are under 18 years old or if it’s too challenging for you to see past my way of speaking to get something useful and human from the story that I’m telling here. I certainly don’t want to harm anyone’s sensibilities or comfortable understandings of who I am as an individual based on their limited or outdated knowledge of me, but you should know that while I am a cancer patient and a really awesome person, I am definitely no angel/saint nor do I wish to be seen inaccurately as such. I happen find my flagrant flaws and brash fallibility to be charmingly great assets. Also, I’m finding this outlet far too useful in finding my own strength, courage, and will to fight this dreadful monster that showed up on my doorstep 3.5 weeks ago, so to change course now I think it might not serve me well. Also, my belief is that an author implementing a censorship clause takes that responsibility from the place it really belongs, on the reader who is opting in. And… um… so… yeah. There’s that.

(Shudder)

“In with anger, out with love. That’s what Segaloo says, darling”

(Shudder)

So where was I? Oh right, chemotherapy. Cancer. Hospitals. Drugs. Nurses in hazmat suits injecting me with mustard gas and mouse parts. Bad fluorescent lighting. Fun stuff.

I think I forgot to mention that it’s flu season and all of the 8e Floor is under serious flu precautions to keep all of the patients safe, so everyone walking around the unit and into patient rooms is wearing a yellow mask over their chin, mouth, and nose. Patients aren’t allowed out of their rooms without a mask on. Even my dad wears a mask over his face when he’s in the room with me because he has remnants of a cold, which might have actually turned out to be allergies after all, but was thoughtful and cautious all the same.

It’s a strange feeling being in serious sickyville, especially feeling as un-sick as I do. That’s another thing I don’t think I’ve spent a lot of time on, my symptomology. From day one even up to this current writing, I have yet to have a really bad cancer symptom (other than that initial swollen lymph node) that wasn’t treatment induced. I’ve had post-operative pain from the two biopsies I’ve received, I’ve had a little bit of pressure in my groin area because of the swelling (though that may have also been a post-op side effect), and I’ve had reactions to the chemotherapy that I’ve received. So what were those again? Well remember the edema (swelling) in my right leg I mentioned from the many many many bags of fluid I received and the gallons of water I drank but couldn’t completely eliminate because of the blockage in my lymph node? Chemo induced. Also some fatigue, very mild headache, and a little irritability? Chemo induced. I guess the worst has been the constipation when I didn’t “go” for about 6 days, which really ramped up the irritability, and was also directly related to chemo drugs! But no nausea/vomiting yet (knock wood!), no hair loss (yet), no weight loss (dammit!), no 18 hours of sleep, no real feelings of malaise (again, knock wood!). In fact, this whole time, this has been a disease on paper for me; something they are reporting to me with lab values, pathology reports, PET scans, and treatment plans as they develop and implement them. Talk about having serious faith in modern medicine!

So let’s talk about modern medicine a bit. Having never really accessed healthcare at this level of depth before nor from this perspective, it’s been a very educational experience. We have arranged a very well organized machine in our healthcare system that requires careful coordination, dedicated staff, and clearly a lot of education. Granted, I’m probably at the top institution in Atlanta, but I’ll just blindly believe that it’s this way everywhere, because it’s my delusion after all and I think believing in the magic of the provider is also part of the healing process. Each provider that I have had treating me, regardless of weekday/weekend, day/night staff Nurse, PA, Pharmacist, or MD, has given me vital and consistent information about treatment. While my prior exposure to medicine through my family, friends, and my work has given me some working understanding of this language and practice of healing, it really builds my confidence to hear the consistency and professionalism of the staff as they discuss this serious and highly theoretical condition that I seem to have acquired.

And now the hospital dining experience. The. Food. Is. Bad!! Like, your elementary school cafeteria comes off as super delicious in comparison. Like, a slab of turkey or london broil slathered in some kind of gravy substance served with veggies that only retain a hint of their original color after the steambath they took; luckily they also leave out butter, salt, pepper, or herbs for flavoring too. Thankfully I have a barrage of people bringing me chik-fil-a, thai food, girl scout cookies, candies, Starbucks, ice cream, and giving me a great excuse to turn in my trey back to the food collectors with only the iced tea (which is even bitter and not served with a straw!) back untouched. I love that several of the nurses have been in the room when the trey arrives and comment “Yeah, good luck with that, I’ll see you later.” Why is it difficult to make good quality food in a hospital? Is this why people get so cancer skinny? Why are all of my homeless patients in the hospital ER asking for this crap? Surely you can scrounge for better fare outside of a nice Pizza Hut dumpster somewhere. Seriously, I know that I’m a food snob in real life, but come on now!

So they encourage fitness during your stay at Chez Cancer and 21 laps around the unit = 1 mile. So of course I make a competition out of it, vowing to beat the other patients while dragging my infusion pole (whom I’ve named Brenda and my dad decorated with a plastic orange daisy) with a hose coming out of my chest and a yellow facemask around my mouth. I have several visitors that accompany me on these brisk walks that I mark off on a white board with hash marks. On the 2 days when I get an hour reprieve from Brenda, I even walk out to the student center (with my sicky yellow facemask and hospital bracelet scarlet letters of course) for lunch and around the quad at Emory past the early spring games of frisbee (yum-o!!) and guesstimate my progress on the white board. It’s so very strange to get so excited about 1 measly mile (or fraction of a mile!) after logging so many thousands of miles on a spin bike and treadmill at the gym… but I guess it’s proof that cancer sucks.

Le sigh. So anyway, I finally make it to my last day and I’m soooo ready to get the hell out of there. I’m excited because they tell me on Monday night that my last infusion is done and that I just need to make it through morning rounds and they will send me home. Everything seems to check out ok in the morning, except that my surgical scar on my groin starts acting up and produces this nasty creamy gunk and requires a visit from the wound care nurses, delaying my visit with the MD and my return home. So these two women, 1 older and vaguely reminiscent of Frau Farbissina from Austin Powers, 1 young and with birthday present ribbon tied in her hair down to the middle of her back, enter and start futzing around with my junk.

“Yup, we’ve gotta open that up and start draining it. Let’s get him a little morphine in his port so we can get on with this and get him outta here.”

Morphine! What!? That sounds like drug #11058 for this hospital stay, and it’s actually one that I know a little about! The implication here is that this is something that’s gonna hurt and it’s nothing those little oxy’s I’ve been taking for headache will fix! Yikes! And just where were these ladies the whole time I’ve been here? Shouldn’t they have been tending to this the whole time rather than just slapping a bandaid on it twice a day? Whatever!

So they shoot me up, I feel no different, and they start digging around and pressing and making noise. It does sting a little bit even through the morphine. They are pretty quick though and get the job done, patch me up, and tell me to follow up with a wound care specialist. Great. Another doctor. Why not?

The MD finally comes back in, has the nurse unplug my port, kisses me on the forehead, and tells me that I’ve done better at this stay than 90% of patients typically do and informs me to return for labs later in the week for follow up. Now pack your knives and please go.

“Yes sir. Whatever you say sir. Thanks so much for the opportunity. Now someone please help me up!”

Whew. So there we go. Chemotherapy round 1, check. I’m officially in the pool and I’m swimming pretty well, I just hope it stays this way and I can be a cancer superstar all the way through.

Goodnight my dears!

Chemo Round 1, Part 1

I should probably remind folks that if you want a (near) daily reporting of activity that you can check out my parents’ blog at:

http://www.caringbridge.org/visit/bryanraybon

I want this spot to be about telling the long form story and my dad is much better about telling the pertinent daily details, so give it a look in case I decide to be lazy again for a few days. 🙂

So Thursday 2/17/11 was the day I checked in to Emory for my first round of chemotherapy, the A-arm regimen (as in A-arm and B-arm, there will be two) called R-Hyper-CVAD that was to be administered over a 5 day inpatient hospitalization. My brother arrived that morning and waited with my parents and I for a call from the hospital for a bed to open up. It was a little bit tense for a variety of reasons, notwithstanding the previous day’s shenanigans, and we didn’t really have a great idea for what the process was going to be beyond a phone call we were meant to receive from a nurse on the unit telling me to head over when a bed has opened up. Clearly I didn’t have the patience to be waiting around all day for some nurse that I never met to get around to calling me to say “sure, come on over, I mean if you can make it or whatever” and neither did the other 3 people in the room. So I started making my calls to the outpatient clinic trying to make someone de-mystify this process for me and make a more concrete plan than “wait for your phone to ring for further instructions” happen. I page my “nurse coordinator” Christina and 20 minutes later someone else calls me back, saying that Christina is busy and asking if she could help with anything.

“Uh yeah. Christina seems to be busy a lot because I can never get her, that’s weird. Anyway. So I’m supposed to go inpatient for chemo today and the only instructions I’ve received are to wait for a call. Is that standard procedure? It seems a little informal to me, especially since I’ve got tons of questions since I never did this before” I said.

I think there might have already been a hint of tone in my voice. Maybe. A whisper of tone really.

“Oh, this is your first time? No, this is not unusual. Like, what do you want to know?” she said.

“Well, like, do I have any food restrictions? What should I bring? What shouldn’t I bring? Where should I go? Where do I park? Where’s my first stop? What’s the number to the unit, I think I wrote it on a napkin the other day and then lost it.” I said.

“Huh, sounds like they didn’t give you a lot of preparation for this. Sorry about that. Um, I don’t really work over there so I’m not expert on all of this stuff but as far as I know there are no food restrictions, you can bring snack food if you like, bring clothes for a few days, most people bring t-shirts and pajamas, you park in the same place you do for the outpatient center, you start in admissions on the 2nd floor, and really the nurse should be calling you but here’s their number.” she said.

“Oh. Well. Good. Thanks.”

I feel slightly silly, but glad for more information that I can pass to the problem solvers in the room (read: dad and brother) so everyone feels a little bit more in control. Then I call the unit and speak with the nurse who basically reiterates what I was just told and said she would call me soon, which she did around 11:30am.

Off we go.

We check in through admissions and I flirt with Whitney Houston’s cousin (not really… duh… just could be) who is working the desk for about an hour. Somehow she indicated to me something that let me know that she believed that my brother, whom I clearly share some physical familial features with, might have been my life-partner. Creepy! Eww! Vomick! I know he would be repulsed too, and for other reasons, but is this some kind of sicko movie trailer for the chemo-nausea? Egads! (Oops, I forgot to tell him or anyone else this… I hope they don’t mind). Anyway I cleared that up for her very very quickly and then she promptly offered to get me dates while I’m around and to control the inevitable parade that will be marching through her doors. She had a great really laugh and I really do love and cherish my sassy black women with a wig on they head! Really, sassy women at all I guess. I think I could work with her and so ultimately she was great! M’kay mi’hunny? Shoo…

So we get up to the unit, showed to the room which has a great big glass bay window view of the Emory campus but mainly the big blue sky. It’s pretty nice as far as hospital rooms go: clean, simple, sterile, equipment hanging on the wall, a bed with rails and controls on the side, a stainless steel sink, antibacterial soap and antibacterial foam prominently placed around the room, fluorescent lights in the main room, fluorescent lights and grey tile in the bathroom, fluorescent lights in the racetrack around the 24 bed isosceles triangle shaped unit, fluorescents in the nurses station, probably fluorescents in the closet and fluorescents under the bed if I had bothered to check. Thank God for those big bay windows and for one recessed “reading light” in the corner… I just can’t see how anyone can be expected to get well when they are forced to be under such harsh and unflattering light. How bad would it be if I brought in my own pieces to design a lighting concept? I’ll have to consider that for next time.

A flurry of providers come into the room over the next several hours: the intake assessment nurse Stacey London, who paid $500 to have Nick Arrojo cut her hair once, was immediately a sassy favorite, Maria the charge nurse has been there for 30 years and is clearly Mother Superior on the unit was delightful and soothing for my anxiety, Laurie the PA who I saw most and felt gave me the most medical attention over my stay reminded me of my sweet unassuming piano teacher growing up and was also delightfully soothing, a chaplain whose name I didn’t catch but looked very much like my younger brother and wanted to talk about the meaning/grief of cancer pretty quickly. The chat with the chaplain was brief and essentially a referral to my more religious and spiritually minded parents. Sidebar: if the connection hadn’t just happened with Miss Warwick, I might be commenting on Mr. Chaplain’s pretty eyes… but I still taste vomit in the back of my throat even having that thought, so never mind. Laurie sent in two other nurses to make me laugh by painting big red lips and an old man’s pipe on their facemasks. It was silly and made me wonder if she thought I was actually 8 years old, but it also let me know that these women are angels who don’t want me to suffer and will make fools of themselves to make me happy and make me better, so I smiled politely.

The intake assessment got all kinds of data on me: height, weight, medical history, vital signs, basic story so far, procedures so far, exercise patterns, dietary patterns, bowel patterns (oh get ready for the shit talk, it’s a’comin), history of mental health/substance abuse problems, alcohol/tobacco use history. Yes I was honest “enough” about my secret tobacco shame… in front of my parents. I’m clean now, and that’s all that matters ok? Clean. And I already have cancer, so stop judging me. Jerk. Meh.

I’m sorry. That wasn’t fair. You’re not a jerk. I am. Keep in mind that I have no access to vice through all of this. I mean oxycodone, ativan, and steroids that act like cocaine are great, but just so’s ya know, narcotic pain medication or anxiety medication does not take you from pain/anxiety straight to euphoria like a nice cocktail might, rather it just removes those unpleasant symptoms. And drug abuse is frowned upon in the hospital. Just sayin.

So. Then a cute young pharmacist who could have been Kelly Kapowski if she had gone to pharmacy school instead of dropping out at Bayside High came in to explain my regimen. She bumbled a little bit in the beginning since for some reason she didn’t even have my accurate diagnosis clear (insert a little stomach flip here, especially since she was talking about an “intrathetcal bone marrow tap” that sounded like an administration of medication in the same method of the bone marrow biopsy which I had no desire to repeat!) but cleared it up very quickly and gave a good explanation for the R-HyperCVAD protocol. I will give a tiny bit of her academic/non-scary version mixed with my own understanding of what she told me:

Rituxan – A non-chemotherapy drug the slows cancer cell growth and aids the other drugs in the fight. It’s made of mouse parts. Gross. Sci-fi. It has a strong chance for allergic reaction, which is controllable and will not inhibit administration of the drug since there is no substitute and it is an essential part of the regimen. I will receive one 4 hour infusion on this round during day-shift tomorrow when the full staff will be present in case of allergic reaction. I think this drug gave me the metallic flavor in my mouth which went away after it was over. This was the only side effect.

Cyclophosphamide (Ctyoxan) – A mustard gas derivative, discovered after WW1 survivors of mustard gas bombing also had low white blood cell counts. I get a good strong dose of this (hence the “hyper”) 6 rounds every 12 hours of 3 hour infusions of this drug over the next 3 days. This is the first chemotherapy drug I received at 9:00 that night on that first day. It scared me at bit, but ultimately I didn’t notice any side effects from it.

Vincristine (I refer to as VickyChristinaBarcelona) – I don’t know much about the action of this drug, but it is a chemotherapy drug that only took 10 minutes to infuse, I think I only got it once on the 3rd or 4th day, and I dont think there were any side effects.

Adriamycin (Doxyrubicin) – This drug was referred to as the red devil or as red kool-aid because of it’s bright red color. . It turned my urine peach colored and wigged me out a little bit because it looked different from the other drugs that were just clear fluid. Also, when the nurse brought the bag in to infuse she wore more protective gear than normal and kept the bag under a green plastic bag like it was a wine bottle or something. Scary photo huh? At least she was nice and I had other distraction. This was a 24 hour infusion that I got on the last day in the hospital. I think this contributes to the “hyper” moniker since another patient talked about taking the same drug over 3 hours in an outpatient infusion center.

Dexamethasone (Decadron) – This is a steroid that was given to me in 10 tiny green tablets. I think it’s supposed to do something to the vickchristinabarcelona, but it really just made me very very very irritable. So irritable in fact that I got a psych consult recommended to me my my doc and parents to see if there was something she could do to control that when I was taking it. Yikes! I don’t remember throwing things or yelling at people or even saying anything nasty…. but again, I have this tone that I take sometimes that must have been an echo of what happened in the recovery room from the portacatheter installation.

Ok, so there you have it folks, a basic primer into my first inpatient hospitalization. I’ll try to write more tomorrow as it seems I will be sequestered in my home for the next few days since my white blood cell count just dropped from a healthy 8.0 on Friday to a 1.2 today (normal limits are 4.9-9.1) and I won’t be able to go out or have visitors. Stupid denial popping reality…. showing up like that and shit… bah!

G’nite y’all!