Sick and sicker

2 10 2011

Hey everybody,

I’ve wanted to update for a long while since so much has happened but have felt too weak and uncreative to do so. Sorry guys. It looks like it might be that way for a little while longer. So i wanna encourage you fo read my dads blog to get the full scoop and I’ll be back soon as I can to fill in some of my part.

Anyway, go to http://www.caringbridge.org/bryanraybon

And that should give you the play by play of this increasingly unpleasant story.

Love to you all.

Bryan





VTEPA Broke My Bone Marrow

13 07 2011

Hey Everybody,

A very wise and beautiful drag queen once translated her mother’s favorite expression “Don’t get me started” to “Are you ready?  Because I’m starting.”  Well, don’t get me started…. but yesterday was one of those days where everywhere I turned I had to breathe and think about just how much anxiety I’m willing to spend on this bizarre situation and how shrill should I get when trying to make sense of it and get my way.

So this is day 29 of my first round of VTEPA.  With previous chemotherapy I was on 21 day cycles where I was meant to spend the first 5 days in hospital, then get really sick on paper (low platelets, white blood cells, hematocrit, and red blood cells) between day 7-14 and then recover on days 14-21 to start over again.  Well here I am on day 29 and all of my blood measures are the same as they were on day 7 when I first bottomed out despite 6 infusions of platelets, 6 bags of red blood cells, and an injection of human growth hormone. (Neulasta – a drug meant to improve my white blood cell counts)  It seems that VTEPA is great at killing lymphoma tumor cells according to my CT scan… and also it seems to have broken my ability to make my own blood cells.  I find this a little disturbing.

I learned all of this yesterday during a waiting room day from hell.  It started with blood work at 8:45am (I never had to be at my regular job until 9:30 and it was much closer to my house).  By 10:00 my nursing coordinator Mary comes out and sweetly tells me that she is sending me to the ER because my potassium level is “critically low” and that they need to hook me up to a heart monitor.  She also informs me that my labs are just as bad and a little bit worse than they were on every one of my last visits so I will have to get more blood and more platelets today and my second round of VTEPA will be delayed longer.  I’ve heard from other patients that the ER is the last place you want to go when you’re neutropenic (lacking immunity in each of these blood components) because of the risk of exposure to other sick people who can infect you with god knows what illnesses they carry around on their scabby unwashed bodies.  Insert increased anxiety level here.

I walk over to the ER, shrieking incredulously over the phone to my dad along the way about the “cardiac emergency” I’m apparently having despite the fact that I still feel perfectly fine.  He advises me to wash my hands a lot, stay as far away from people, and touch nothing in the ER.  Got it.  Check.  Cripes!

So I check in and turn on my charm, hoping it will get me a good clean room efficiently, also flashing my face mask and paper-name-tag-jewelry that they put on me at the outpatient clinic to show that I’m vulnerable and treatment has already begun and could they hurry the hell up to get me out of here?!?  No sooner did I hand them my insurance card and ID did cheerful nurse Mary pop into the scuzzy little waiting room and rescue me back to the clinic.  She explained that the potassium level could have been a mistake in the lab results and they want to recheck it and sorry for jumping the gun on the ER.

Now you know I’d rather walk on my lips than talk bad about someone, but this kind of giggling schoolgirl “oops” accountability routine is something I’ve grown to expect from this person and it’s a reason I’m grateful that I don’t often have to deal with her.

When I get back to the clinic I get bounced back and forth between the lab to draw one tube of blood at a time from each arm rather than my painless and already hooked up portacatheter (this happened three times), to the clinic where I think I’m going to see my doctor or PA… but don’t, to the infusion center waiting room where I’m supposed to receive my infusion of blood and platelets.  All of the front desk staff and lab techs laugh at me for coming back to see them again and again, meanwhile I’m getting more and more frustrated that a provider (doctor, PA, or nurse) isn’t coming out to tell me what the hell is going on.  I’m still coming down from that brief ER visit and am worried I may have to go back there again.  Luckily I packed mother’s little helper and had a little nip… Ativan, cancer cocktail of choice!

So I finally land in the infusion center around 3:00 to get these blood products I was promised at 10:00 and stick around until 7:00 to finish because I’m a good vampire, I don’t gulp it all down at once like some kind of glutton.  During this time I was able to email my PA and get an idea of what this means for the next phase of treatment.  Her answer was basically “I don’t know.”  I’m supposed to come for more labs and probably blood on Friday, then another check on Monday when I’ll meet with her and Dr. Langston.  At that time I’ll be: 1.) recovered and start Round 2 of VTEPA  2.) not recovered and begin conditioning for stem cell transplant or 3.) get spot radiation for the giant tumor in my belly and then move on to stem cell transplant.

My preference would be to skip round 2 of VTEPA, especially since stem cell transplant conditioning involves “superchemo” anyway and I’d rather not expose myself any more toxic chemicals than I absolutely have to or risk completely shutting down my ability to make my own blood.  I spoke to my transplant nurse today who is actually going to move forward with screening my brother to begin transplant just in case we decide on that option.  He needs an EKG, Chest X-Ray, some blood work, a physical, and to begin taking human growth hormones to make his stem cells flush out into his bloodstream.  I take this as a good sign!

Now, I try not to complain but because I’m thinking and talking about cancer all the time it feels like complaining.  It’s serious stuff and tends to inadvertently trump my friends’ regular life stuff.  I don’t mean to trump you.  Please don’t subjugate your regular stuff just because my stuff is medical or whatever.  I also try to talk about non-cancer things too, like did you hear that thing on NPR this morning about Fox News/News Corp’s dirty tax attorneys getting the IRS to pay them $4.8 billion in taxes instead of paying taxes themselves?  Now that’s something to complain about!  But don’t get me started…





AIDS Walk Already?

7 07 2011

Hey Everybody,

So my dear sweet friend Michael Baker, development director for Positive Impact  (aka my employer), has forced me to start raising money for AIDS Walk today even though the Walk isn’t officially taking place until September (or maybe its in October… I dunno, I forget, must be chemo-brain…).  Anyway, there were threats of gummy bear attacks, promises of employee “benefits,” and a few tears shed so naturally I couldn’t resist.  Rather than email it out to everyone, I decided to share my plug on here.  I think you’ll agree that it’s a very nice plug and hope that at the end of it you will click on the link and make a donation.  So here’s what you would have gotten if I had emailed it to you.

Love,

Bryan

PS: If this doesn’t work, I may have to email it to you later… just so you remember to donate.

==============================

Hey Everybody,

So you know that I have worked in HIV mental healthcare for several years now, seven years to be exact.    The work I get to do in counseling with individuals facing their mortality with a life threatening illness along with the stigma and shame that accompany an HIV diagnosis has been a life altering privilege.

You may also know that I was dealt a pretty significant blow to my own health this year.  Cancer has rocked my world and profoundly changed my life in every way possible. I have a new and deeper way of seeing life and death through this experience and look forward to returning to my work as soon as possible so I can share a new and deeper empathy with my clients as a survivor who will always have the stigma of serious illness.

Ok, so here’s the real world reason that I’m asking you to donate to the AIDS Walk and not the American Cancer Society or the Leukemia/Lymphoma Society.  Those agencies fund research that will eventually trickle down to affect my life after it has passed through many many hands.  A donation to me through the AIDS Walk goes directly to my employer who has held my job, given me top notch health insurance, and allowed me to work on special projects with a very flexible schedule so that I don’t go stir crazy during my very isolating time in cancer treatment.  On top of that, they are the amazing people that have housed my family from Charleston for many weeks for free, given me food and books and Reiki treatments while I’ve been in the hospital, and have given me lots of love and support for my own mental health.

These are amazing people.  This is an agency that is worth supporting.  You can keep us going with even the smallest of donations… though obscenely large donations will not be turned away.  A small donation does infinitely more good than no donation at all.

Thanks for your help… and sorry about tugging on those heart strings.  I bet it hurt less than a spinal tap though.  :-)

Love,

Bryan

http://aidswalkatlanta.kintera.org/bryanraybon





Finally some good news!

4 07 2011

Hey Everybody,

I saw something pretty wild this past week and don’t I wish I could have opened the camera app on my phone fast enough to have caught it!  (iOS 5.0, I’m talking to you!)  Dr. Langston smiled!  It gets even better after that because… Oh Em Gee… then she said “We’ve gotten a good response, this is what we are looking for, VTEPA seems to be working.”  Now I know that’s a reasonably lukewarm and tentative sentence that would hardly incite a light-switch rave (and she literally stuck around just long enough to deliver that sentence) but this woman has had to deliver some of the most craptastic news I’ve ever heard in the last two long form meetings I’ve had with her in the outpatient treatment center.  To see the crisp white folds of her lab coat floating away and not be left with a feeling of dread and anger after meeting with her… I dunno, it was like I had been kissed on the forehead by Lady Gaga herself. Just the right amount of bliss and plenty more to come.   A happy dance ensued, which is not easy to do when you’re hooked up to an infusion of platelets and surrounded by oldster cancer patients.

So there’s that.

In other news, CT scans are pretty weird.  They are almost identical to a PET scan in that you drink a nasty barium cocktail, served by a snarky radiology tech, and then get sent through a giant tube with your pants around your knees, hands over your head, listening to the dulcet tones of a jet engine mixed with Lite FM radio in the background, then anxiously wait for the result.  The CT just takes half the time (for testing and results), the long tube is now a short doughnut, and during the 12 minute procedure they inject a contrast dye into your veins from two clear phallic shaped containers with plungers inside of them that makes your naughty bits get really hot for a few seconds.  Hot like temperature hot… and not entirely dissimilar to sexy hot, just in a really bizarre and unexpected setting.  I didn’t know what to think.  Does this happen to everyone? Am I supposed to be turned on?  Why don’t they mention this in the brochure?  It might make people less anxious if they did… but it might also ruin the surprise.  Should I be embarrassed? It’s pretty much the unsexiest place I’ve ever been, second only to the psych ER at Grady Hospital.  Did I imagine it?

Since hearing the results of the scan I have decided that warm naughty bits are always a good sign.  In fact, I’m going to request them on every one of my future procedures and complain when I don’t get them.  With the set up including cocktails and a request to remove your pants I can only conclude that it’s a promise fulfilled.  And that’s good news to me!





I’m still here…

24 06 2011

Hey Everybody,

As you may have noticed, I took a little blogging break.  I didn’t mean to.  In fact I have 4 unfinished posts that I just got irritated with writing, so I gave up.  I’m such a quitter.  First a cancer patient, now a quitter, how pathetic.  I’m so ashamed or whatever.

Anyway, what’s been happening hasn’t exactly been the most exciting news to report.  Hopefully many of you have kept up on my dad’s CaringBridge as he seems to do a great job documenting the history of all of my doctor’s appointments, hospitalizations, drug administrations, test results, and blood work.  I’ll try to summarize a bit here just in case you missed it.

So r-HyperCVAD turned out to be a major tease.  After 5 rounds of therapy and 24 days in the hospital it shrunk the major tumors we were looking at, got the cancer out of my spleen and bone marrow, then changed its mind and let the fucker grow back bigger and “hotter.”  This was very discouraging news as I was fully expecting to hear that everything was gone and that I could go ahead and proceed with my autologous (easier, shorter recovery time, use my own stem cells) transplant and move on with life.  Alas, my cancer is smarter than the state of the art first line of defense against Mantle Cell Lymphoma.  I guess I’m not surprised, it is my body after all.

So we heard this news in late May and began to revise the treatment plan with much more tentative steps. Quick and dirrrty: new chemo, test, second round of new chemo, test, radiation, test, allogenic (harder, longer recovery time, use my brother’s 10/10 matched stem cells, high risk high reward) transplant, wait 6-12 months, remission?  Got it?  It becomes a bit like a choose your own adventure novel at some point with all of these decision points. I really liked those books growing up, but this one scares the shit out of me, especially since I read every single combination when I was a kid.  Also, each step along the very very long way sounds like the total opposite of fun with no easy way out.  I can always find the easy way out or at least some way to half-ass it so it’s not so hard.  No dice this time.

Whatever.  One foot in front of the other.  Keep it moving.

Anyway, last week I did my first round of VTEPA, a stronger chemo regimen with more side effects and risks of damage to my health which was developed at Emory. It has clearly knocked me on my ass, so I’ve been recovering all week.  Seriously, all of that hyperCVAD crap was supposed to do these terrible things to me and hardly any of it ever showed up… not so with VTEPA.  I’ve been puking, nauseous, sleeping a ton, ringing in my ears, I think I just got my first official mouth sore today, and all of those house of horrors things that cancer is supposed to bring you.  (PS: I just googled “euphemisms for diarrhea” to spare you from reading that word and came up with nothing nicer.  It’s now officially in my search history.  You’re welcome.)  Anyway, I get it now.  Cancer patient.  Unpleasant.  Thanks for blowing a giant hole in my denial.

So I’ve been getting blood work all week to watch my WBC and platelets plummet, which is great.  Back to living in a bubble with no immune system after feeling kind of frisky and tricking my friends into thinking that I can just go anywhere anytime.  I’m back to telling people “I’m sorry, I can’t, don’t hate me.”  Meh.

We are doing a CAT scan (a more targeted version of a PET scan) next Thursday to find out if this first round of VTEPA has done any good and if so then we will probably do a second round.  Joy.  I can only imagine what the “cumulative effect” of this chemo is going to be like after a second round.  On the bright side, I didn’t die from this regimen like 2 of 16 patients did when they first tested it in 2006.  So there’s always a silver lining… you just have to really wanna see it.  PS: If you’re a researcher, and your regimen gets used regularly, please write a follow-up study that is accessible so that nerds like me who read your articles don’t have to be so afraid.  A 12.5% mortality rate from just receiving the treatment is not a happy figure!  Luckily there were a lot of anecdotal reports from doctors and nurses at Emory to reassure me that this regimen is “used all the time, at least once/week” with little to no “bad outcomes.”

Not that fear of dying has anything to do with surviving treatment, but… it does sometimes.  So feel it and keep on cruising.

After that is complete we will probably be doing radiation.  (insert ominous movie music here)  “It’s not like you’re thinking of what they were doing back in the 1950’s where people got burned and stuff” says Dr. Langston.  “They’re like physicists with a scalpel and can get at some of the areas we can’t reach with the chemo with their cyber-knife.”

Now, I don’t know what she was thinking I was thinking, but I wasn’t thinking about anything burning in the 1950’s… so I’m glad she put that image right into my head before explaining what the hell this Nintendo chemo is going to be doing to me.  Luckily she is passing that off to my new Radiation Oncologist Dr. Natia!  Now, Natia is her first name since apparently the last name so difficult that isn’t even worth attempting to spell or pronounce. (For the record, it’s Natia Esiashvili, MD) I hear she’s the go-to expert for radiation with lymphoma and that Emory has “state of the art” equipment that she uses.  So that’s good I guess.  I think I’ll wait a tick before I do any research on this radiation thing and let her explain it to me first.

So that’s what I know.  At least about treatment that is.  This is going to take longer than I had hoped and will be harder than I first imagined.  My lead feeling here is annoyed, but also kindof scared…. as you might have noticed.

In the meantime, I’ve been trying to make the most of my new life.  Reading a lot, made a trip to Amicolola Falls for hiking, made a road trip to Charlotte, NC to see my high school besties, drinking some fantastic cocktails and eating spectacular meals (shh, don’t tell my doctor about the cocktails), shopping for makeup to draw on eyebrows with my brother and sister-in-law, and overall spending as much quality time with friends and family as I can.  I even went back to work for a few days, promising the doc that I’ll be bathed in antibacterial wash, wearing a facemask, and staying the hell away from high traffic / high client areas.

I’ll try to keep this a little more regular and will hopefully have better news to report in the future.  In the meantime, I’m going to take another Zofran and some Immodium.





Don’t you just “hate it” when people overuse “air quotes”?

11 05 2011

Hey Everybody,

Well, Round 4 (b-block) has definitely been harder and taken me to much lower points of fatigue, left me with much lower blood counts, and for longer than I’ve had before. It seemed like the height of luxury to leave the hospital after the last round on a Friday night and go to a party on Saturday night for 2 *whole* hours and for brunch last Sunday and a birthday party (whispers: at a bar!) on Monday before my immune system started to crash, because when it crashed it crashed hard so I was home bound for most of the week. Since Thursday I’ve had as low as 6 platelets (I’m up to 11 today) and an undetectable (< 0.3) white blood cell count (I’m up to 1.0 today).  Normal platelets are 150-400, Normal WBC is 4.0-9.0.

My dad came into town Sunday night to prepare for the hugely important stem cell collection we had planned for Monday morning to set up for the stem cell transplant that is now (hopefully) scheduled for the end of June. After a breezy suggestion that I take my temperature after dinner, we find a 100.6 reading which lands me a three-day prison sentence, errrrr, “unanticipated hospitalization,” for “neutropenic fever” until my cells come back to a “reasonable level.”  Yes, you correctly pictured me doing sarcastic “air quotes,” grimacing, and sighing with disgust.  (While I’ve been known to talk with my hands, I defend this choice as I infrequently make such a gesture.)  Nevertheless, stem cell extraction didn’t happen on Monday and may not even happen tomorrow (Wednesday), and of course, I FEEL FINE! Well… mostly fine… fine enough that I’d be ok on my own damn sofa. Fine enough not to have people come ask how I’m feeling and have I had a bowel movement yet at 3:00am! I mean, sure I’ve got a few beautiful little spots and bruises on my legs called “petechiae” from having extended time with low platelets… and a lovely little “GI problem” that makes me feel like I’m getting “stabbed” when I sit on it wrong… but it’s nothing that I can’t handle on my own right?

Grrrr! I am so mad about this! I’m supposed to bounce back faster than this!  Why won’t my immune system just cooperate dammit?!?  I don’t just miss appointments, especially ones like a stem cell collection that would speed along my progress through this dreadful house of horrors. I hate to have any part of my body defaced even for a brief period of time, this is why I have never darkened the doorway of a SuperCuts… if you wikipedia’d “petechiae” you know what I mean, though my case is much less severe than what is pictured. On Sunday I refused to pack more than one t-shirt and one pair of underwear for this visit since I didn’t plan to stay longer than overnight… and now I have to get my dad to go into my underwear drawer and choose clothes so I can shower and not stink anymore. Great.

During lunch today I learned that I have decided to take my anger out on the anonymous unhealthy public at large with loud comments on behavior.  Like the hate stare and  forced cough I gave from behind my facemask to smokers sitting just on the other side of the no-smoking sign outside of the hospital.  Then there were the “persons of size” who choose to take an elevator up one floor carrying their fried cafeteria lunches who got a heavy sigh and an incredulous “Really? One floor? Were the stairs broken? Maybe you’d lose that waddle if you walked more… fat ass” in a completely normal tone of voice as they walked out of the elevator.

Thankfully my poor “victims” had waddled out of earshot by the time I trailed off with my final insult and my dad was there to shame me for my inappropriate and rude hostility.

Anyway.

I had a pretty tremendous Reiki session on Wednesday that released a lot of the anger and pain I’ve felt through several of the procedures I’ve had during treatment, namely the negative sense memories of the spinal tap and bone marrow biopsy. What a relief that was to finally let go of something I wasn’t even aware I was holding on to.  I tend to be skeptical of lot of that “woo woo” kinda shit, but this was like getting some kind of spiritual enema and I highly recommend it as a supplemental therapy to whatever kind of work you are doing on your body/mind.  I’ll even use the word “cathartic.”

I’ve had others offer support in ways that I’m not quite sure how to gracefully accept or respond to.  It seems elitist but in some cases, particularly when I’m angry or sick, I need emotional support that is quite sophisticated and tends to be best provided by mental health or spiritually minded folks.  For those people in my life who I adore but aren’t in a position to give me what I need or that I think might trigger my caretaker personality, it’s kindof awkward finding kind, respectful, and creative ways to say “no, not now, I’ll call you when I’m ready to.”  Not that my friends are all messy and need caretaking or that to be a good listener you must have graduate training in psychology or divinity.  Far from it.  Some of the messiest people I know have Ph.D.’s and the most enlightened were informally educated, my shortlist of supporters reflects this diversity.  It’s just that some relationships were designed to have high intensity, some are meant for levity, and most have room for both.  It just so happens that right now is pretty intense for me and as much as I want fun, it’s hard to say “hmm, love you, mean it, but not right now boo, call you later” so  I hope that they stick around for when I’m better and I’m able to be more balanced.

And then there are the offers of pity that are clearly self-serving, communicating their own needy unresolved trauma masked behind a sense of superiority because they survived a “similar” yet completely unrelated situation.  Those are pretty easy to decline through forced smile and a polite yet snarky “thank you.”

During the week I’ve had some very kind close friends spend time with me at the outpatient infusion center while I wait and wait and wait to get chemo and platelets and bags full of red blood cells. They let me know that I’m loved and known and can rely on my relationships for support.  I’m learning to appreciate the importance of waiting, to find the action of creating life in the illusion of inaction that is waiting.  That’s really what I’m doing, even this very minute, creating life.  Creating stem cells, the smallest particles of human life, that can be harvested and used to preserve and protect my life.  Since I’m somewhat of a healer in my normal life, these are very important cells because they will be used to heal others.   My stem cells are my children and their legacy is what gives this moment its meaning, especially since they are the only biological children I will ever have.





Chemo, Round 4

28 04 2011

Hey Everybody,

Well I’m back in this dreadful hospital room hooked up to this clicking and whirring machine that insists on killing [part of] me not-so-softly with the “harder B-block” of R-HyperCVAD. They are measuring my urine pH and I am peeing every 20 minutes, returning inedible split-pea soup and gummy cherry cobbler to the cafeteria, and trying to get some reasonable sleep in spite of the regular vital sign checks, eye drops every 4 hours (including 2:00am and 6:00am), chemo and saline bag changes, measures of my ever-increasing weight, and inquiries about the movement of my bowels. All of that to say, I’m have the suckiest time of my life with the nicest people I’ve ever met. The providers here are consistently great, so gentle and compassionate in spite of their extremely annoying, albeit lifesaving, jobs.

So my attitude seems to have changed in the past week since my bubble was burst with those discouraging PET scan results I got last Tuesday. It said that the largest tumor in my abdomen only shrank by 50%, not the 100% that we were expecting which is very disappointing. So I’m back to angry about this interruption in my life and that it is going to take a minimum of 6 weeks longer than we anticipated. I hate being angry, it’s my least comfortable and least congruent emotion. I’m trying to stay focused on today and “putting one foot in front of the other” as Dr. Langston says, because I believe the course of treatment we are on is still going to work even if it has to take longer. However, the news that the cancer hasn’t responded to chemo as quickly as we had wanted it to means that we have to start thinking about stronger drugs with worse side effects and alternative therapies in case we find that after two more rounds of goddamn chemo the fucker has persisted in sticking around my belly and is determined to be “chemo resistant.” It scares me to think that the path of least resistance, the plan that I feel like I understand, the plan that has me back to work by August/September rather than October/November, may not work.

You may have seen my very tasteful Facebook post about this… “fuck you cancer”… another classy moment for me coming out of anesthesia or getting diagnostic information. Not that receiving unexpectedly bad news is ever graceful, but haven’t we learned by now that when I’m sedated that I should probably be awoken by harp music on a bed of roses being told stories about happy puppies? Not doctors or nurses telling me that I’m not responding well to treatment and that I should calm down while sitting on 50 threadcount sheets in bad lighting with shooting pains just above the crack of my ass. No ma’am.

All is not lost however, there is no cancer in my bone marrow or spinal column. Also, the cancer is localized and doesn’t seem to be moving to other organs or systems, which is also good. So, yay, guess I sortof buried the positive lead on that one… forgive me, the dark stuff is just easier to report. This means that we can go ahead and collect my stem cells in this sci-fi looking hemopheresis machine in a few weeks. WHEN we find that the cancer is gone after another re-staging PET scan after round 5 of chemo THEN we can proceed with the regularly scheduled stem cell transplant, probably sometime in July. 100 days after that I’ll be magically cured and back to life, right as rain. Sigh… Clear as mud? I guess that’s October…. fuck. My dad probably explained it better on his blog, so check it out in the link to the right.

So what to do with all of this bummer information? Clearly irritability, anger, and resentment that my life will be frozen in purgatory for even longer than I wanted seems appropriate. Moaping around the house, not returning phone calls, baking myself a whole strawberry cake to eat and lying to my parents about the evidence that I made it to bring to a dinner party. Reasonable right? Dragging my feet into the hospital by refusing to wash clothes, pack, take the pre-meds I’m prescribed, or register with admissions before showing up this time also seemed to make sense. Making little gagging noises anytime someone uses the words “chemotherapy” or “cancer” is like a totally mature way of handling it. Looking at my bald head with disdain and obsessively brushing my remaining thinning eyebrows to see how many more strands are coming out seems productive. Fur sure. Or not.

So what might be more helpful? I’ve talked with a few of my therapist friends about “radical acceptance” and using my “wise mind” (the place where your reasonable mind and emotional mind overlap). I have been told directly to “Put on your big boy pants and do what the doctors say. You don’t have to like it, but if you can accept it then you can do what you need to do to get through it.” I guess that’s how I’ve been coping with this shit all along, trying to stay in the moment and do what I have to do because complete denial means suffering or even death and acceptance means peace and healing. So I tell myself that I’ve never liked coming into the hospital, this stay seemed worse at the beginning but now that I’m here I realize it’s just as mundane and eventless as the previous three times. Also, it’s not so bad to have people take care of your every need and bring you life saving drugs. I’ve never liked being away from my work or my friends, but I’ve found ways to work around that and have even cheated a little bit because it feels good to be naughty (sorry mom, dad, sis, and bro if you are reading this… I’ve not really been that naughty.) I stopped taking care of my body with food and exercise while I was feeling paralyzed and afraid (and recovering from a nasty incision near my junk that made it hard to walk and easy to feel sorry for myself), but I’m better now and should take better care of myself. So I am.

As we learned with George W. Bush, all suck-ass situations come to an end eventually. There may be aftershocks down the road (like continued tax cuts for the wealthy, wars in Iraq and Afghanistan that we can’t seem to get out of, the Defense of Marriage Act, and of course the inevitable shamelessly self-promoting autobiography (READ: breaking ned blog)… but we’ll deal. This is a marathon not a sprint and I’ve got some of the smartest and most compassionate people in the world looking out for me. My Obamacare bill, don’t ask don’t tell repeal, and economic turnaround are coming. Trust.

Fitting the stereotype to a perfect T, I’ve also got my divas for strength. So according to Estee Lauder (and of one of my most favorite brilliant witty friends Colby) “There is no such thing as an ugly woman (or gay man), just a lazy one.” Well the only straight I am is I’m a straight up bitch and I refuse to be lazy or ugly. I’ve got my paws up and my head held high, so just try to understand that I’ve given all I can and you’ve got the best of me. So give it to me, yeah, no one’s gonna stop me now, because I’m irreplaceable and your love, your love, your love is my drug. Bam!








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