Portal Intrusion

I’m writing this post about the first course of treatment after having just gotten home from it. It’s good to be on this side of it because wow… what a ride it has been so far. Going forward I’m going to try not to write while not under the influence of drugs, but I get so many these days that that might be a hard promise to stick to. Actually, as free as my providers have been with the meds so far I get the feeling that if I actually ever stuck to that rule that I would never write anything at all. “Have a headache? How bout an oxycodone? Having a feeling at all? Have a pill.” So… Nevermind. Thankfully I’m an obsessive proofreader so hopefully you won’t be able to tell too much. Except that i just outed mysef… Oops.

So Wednesday February 16, 2011, the day they installed a portacatheter directly into my heart. Michael Baker and favorite co-worker Marky Lambert drive me to the surgical center at Emory for check in. My mood is all business on this day, like im some sort of pro at this. Really I think this is no big deal, it’s just an annoying step along the way to get rolling with this game that I’m ready to be done with already. So I roll up in there, get my valet pass validated, bat my eyes at the nurses at the desk and tell them I’m ready to get my Ironman on.

“Your what?” she asks.

“My Ironman. My superhero. Aren’t you putting some sort of steel into my chest so you can access my heart? While you’re in there I wanna see about what other upgrades you can install. I’d like to fly, be able to see under people’s clothes, and maybe have some sort of device that keeps only people who look great under their clothes in my general proximity. Whaddaya think?”

“We’ll see what we can do.”

So pre-op starts much like the biopsy did a few weeks ago. I get some lovely paper jewelry to identify me, a beautiful shorty gown that shows off my great legs, and an IV that delivers some delicious drugs. My companions are with me to help cruise Grindr to see who we can hook up with while in the surgical center and also to compare the anesthesiologist to the surgeon to the anesthetist… all of whom have great arms and from what I can tell might be eligible bachelors. I may not be looking my hottest at this point, but I’m not dead yet. I also inform the anesthetist (the hottest of the three) that when I’m under the medication that I may say inappropriate things, so I apologize in advance. I think I’m covering myself at this point because I am certain that I am going to say something about his bulging biceps on the operating table and I want him to focus.

“It’s ok, these drugs tend to disinhibit people sometimes, we hear it all the time” he says.

Well that’s no fun, I was trying to be flirty not common. Oh well. Let’s get this show on the road. I get wheeled in and then pass out much as I did before. Ahhh sweet anesthesia sleep, so peaceful. No wonder Michael Jackson favored an anesthesiologist to a regular old psychiatrist….

“Cough, cough, cough….”

“Mr. Raybon you have to stop coughing”

“Get away from me bitch, I fucking hate you, get away from me, I don’t know where I am I can’t even see you. Cough, cough, cough, cough”

“Mr. Raybon we don’t talk like that here in recovery”

“I hate you go away. Cough, cough, cough. I don’t want you anywhere near me, why are you being so mean to me, I’m not trying to cough.”

“He’s a bit dehydrated, get him some water.”

“I hate you bitch! Go away! Cough, cough, cough, cough…. I’m sorry… I hate you! Go away!”

I’m sobbing uncontrollably at this point, trying to stop coughing, unsure where I am and why this experience of unconsciousness had to be changed so dramatically and unpleasantly. I was sleeping so well just a few minutes ago. Now I start to I realize that I am MAD. Who was this bitch that I couldn’t even see? (Open your eyes and look) Why was she making me cough? (Because you are dehydrated) Why couldn’t I swear? (Because it’s a hospital, sweetie) Why is she allowed to see me cry? Nobody sees me cry. (Oh, get over it boo) I hate her. (I’m sure she’s just lovin’ you right about now too!) Why does this suck so bad? (Because it does) I don’t want cancer, can’t I just go home? I am MAD!

Another nurse comes in and is much kinder, she offers me ice chips and dries my tears.

I sob.

Another tech comes in to do a chest x-ray to be sure everything is in the right place, she tries to help me sit up so she can do it properly. They are kind and gentle and nothing like this bitch with the long island accent who I never want to hear from again and I hope gets fired.

The surgeon comes in and looks at my pathetic ass “How’re you doing?”

I squint at him, “I’m mad. I hate that bitch-nurse, I never want to see her again. I hate her. Get her fired.”

“Ok, well, good…” he says, and then walks away, never to be seen or heard from again.

Mom and dad come in at this point and try to console me, giving me ice and water, being as gentle as possible, vaguely mentioning something about filing a complaint and trying to get me to point out who my attacker was. I just sit and fume trying to compose myself so I can get the hell out of here. The surgical site doesn’t seem to hurt too much, though I am aware that there is a big lump above my heart, and they aren’t mentioning anything about pain pills more than advil, so I just want to leave and I don’t want to talk to anyone. I feel so irrational and out of control of my emotional state. I have never felt so angry before and did not know what to do with it. I am just plain mad and am trying not to say anything so I don’t embarrass myself, hurt anyone’s feelings, or seem ungrateful.

Eventually they let me get up and hold my arms, walking me out of recovery and to the car. Michael, Mark, and at this point Brent are all waiting to receive me and offer care. I just glare and fume, sending a “shut up, just shut the hell up, I’m fine” vibe as clearly as I can. They drive me home and I go directly to bed wanting to get back to sleep and as far away from this experience as possible. Brent pushes fancy/bougie chocolates in fussy little packages from his trip to New York into my hand. I adjust my hair under my hat, sigh, and lean my face against the glass in the front seat; it helps a little, I admit.

Once home it takes me a few minutes to get to sleep however because I hear everyone quietly discussing me barely out of ear-shot how “this hit him harder than last time” and “wow, it really took it out of him” but I try to put it out of my mind and relax. This part is over, I didn’t expect it to be bad, it wasn’t fun, but now it’s over and I can focus on the next thing. Chemotherapy starts tomorrow and will be a whole different ball game so this dreadful day must end.

After a little food and rest I begin to reflect on the day with Brent’s help. Why did I get so mad? I have never felt that way before. It was so big and out of control and irrational and unmanageable. I think back to the anesthetist’s words about being disinhibited and I guess they were true. I was disinhibited from my anger about having cancer and it came out messy… those poor nurses and surgical staff. I try to keep it cool and calm so much of the time so that I don’t lose control that I forget that I legitimately have something to be angry about. Sometimes I think of my emotions as self-indulgent and don’t want to take myself too seriously since I lead such a charmed life (healthy attitude for a therapist to take eh?), but life ain’t so charming right now and I now have the oozing scars to prove it.

I wonder how I’ll manage these feelings when they come up again; I don’t want to shy away from feelings, even painful ones, but I don’t want to hurt either. I guess I don’t really have a choice about either because they are definitely coming. Also, I have a staff around me (parents, nurses, doctors, and friends) with medications at the ready in case the feelings get too intense. What’s a boy to do? Guess I’ll keep writing about it and hope to keep making sense.

Bye y’all.

Update and The Calm Before the Storm

4 days into treatment and I’m starting to feel some of the effects of the chemo. The metallic taste was first but seems to have gone, then there was a bit of fatigue which comes and goes, I’m peeing every 20 minutes because of the massive amount of fluids I’m receiving, I’ve got edema in my right leg where I’m unable to completely filter fluids through the blockage that the tumor in my groin is causing, I’ve been more irritable and agitated the past 24 hours for a variety of reasons (it’s a common side effect of the steroid but there is another “elimination” issue that is just now starting to resolve itself and causing irritability.) Luckily I’ve got a great nursing staff that is johnny-on-the-spot with medications and treatments that help each symptom, encouraging me to get over any shyness I have about asking for pain or anxiety medication. I spoke with the doctor on rounds this morning who normalized each symptom and said that I was doing better than 90% of most patients at tolerating this regimen of chemotherapy and he is not worried about me at all. I’m afraid I’m going to have to start limiting some of my visitation to a smaller group though. As much as I love the love, retelling the story of how I’m doing is getting exhausting and as my immune system is declining my herd is going to have to shrink. I’m used to spending time by myself so the masses of people wanting to talk is somewhat unfamiliar, but since people are interested in sharing their love this will be tricky, so I need to hurry up and blog on to the present.

So the plan is set and the calendar is marked, treatment starts on Wednesday February 16, 2010 with my 3rd surgical procedure in 17 days when I receive a portacatheter in my chest (a permanent central line to my superior vena cava that will be easier to access than a regular IV or a PIC line) where they will insert my chemotherapy and other fluids starting Thursday February 17, 2010. The trip to Houston has been canceled and the conversation with my brother has been delivered that I will not be taking the referral he arranged for me. He graciously receives this news. Parents and sister are both on board with this choice to begin here and are anxious to begin and also to receive all results that had not yet been delivered from those initial diagnostics on Tuesday. Mom and dad decide to head back to Charleston this afternoon to recuperate from these past 6 days of anxiety and also to prepare for what we are told will be 6 months of treatment.

I for one am ready to get back to life outside of cancer for a moment. I want to go back to my job and do my regular routine. I want to clean my condo. I want to go out to dinner with friends and listen to what they have going on. I want to go to community events. Oh, and I’m looking forward to a weekend spent with my former partner of 5.5 years whom I had not seen in nearly a year since we broke up last spring. Normal non-cancer drama please! Stat!

So immediately after my parents go home from lunch and I return to work. It’s great to answer intern questions, call in prescriptions for crisis patients who ran out of their antidepressants, review and correct intake reports, assign therapists to new clients, return phone calls, and participate in office buzz. It’s a little bit difficult to get to all of this delicious work with every person walking by with their head cocked to the side asking how I’m doing, so I try to disseminate a cohesive story in front of a group and suggest that people pass it on because I have shit to do.

It is also time to start planning termination sessions with my clients since according to Dr. Langston it will be impossible to come into a work environment such as mine where there are sick people everywhere and risk exposing myself to illness for the next 6 months. My first appointment is at 5:00pm and it is a little strange. This is a client I’ve only been seeing a few months but he immediately responds with a memory of a friend of his who died from breast cancer a few years ago. Great. I have cancer so people immediately think about death and dying, the very thought I’ve been avoiding. Clients tend to think of me as inhuman at times anyway so they can say just about anything they want to me, even if it is about me, so I just put on my counselor face and reflect what is going on for the client, “so I see this is bringing up some unresolved grief for you, tell me more about that.” and make it nothing about me.

One by one over the next week I will have about 12 of these sessions, each one expressing sadness, shock, disbelief, and fear. Each one of my boys (yes, all of my clients are men) was able to get to a place where it was about their own loss and what were they going to do without their therapist for 6 months, which pleased me since I didn’t want to be too distracting to their work, and most of them will be able to continue with interim therapists while I’m away. I will of course be available to supervise by email or phone as necessary… what in the world would they ever do without me!? Ha!

It is also high grant-writing season at work, so there is a lot of stress at the office around sustainability and program preservation. A large part of my work has been building quality management controls and processes so I am worried about protecting my investment. This is why maintaining internal spies and using what has got to be karmically toxic manipulation “if you want me to get better from cancer, you will do your notes/treatment plans/chores while I’m away” to be sure people maintain their responsibilities. Also, I will be logging in remotely to keep tabs on my work.

Oh did I mention that my ex was coming into town? Thought I might just gloss over that did ya? Yes I know I’m a workaholic, but I do have a little gristle of heart left beating in my chest. So Rob has been the love of my life. We were together for 5.5 years, 3 of which were spent commuting between Atlanta and Chicago trying to figure out who was gonna give and move to the others’ city. After all that time we amicably decided to give it a rest for a moment and just commit to the lives we were clearly building in our respective cities. Painful as it was to go through, I am kinda glad I stayed. Who knows what would have happened if I had decided to move away and then have all of this happen.

So I picked him up from the airport on Friday and we had a little awkward exchange “hi”, “hi”, giggle…”so”, “so”… giggle… then we head to the Porter and have some beers which significantly relaxes us as we have food and beverage to discuss and also a crowd to pick apart.

That evening we make it clear that he is here to be supportive and care for me as an important person in my life. We are not getting back together. He is moving to Shanghai for 4 months on the day that I am starting chemotherapy, so while our relationship may resume a more supportive and active role we are not partners. This is kindof a relief for me because really all I want to do this weekend is have a good time. When we were together all we did was have a good time: cook, eat, drink, go out, shop, make silly jokes, talk about people…. ‘n stuff… This is exactly the medicine I need and want and I got it good all weekend long, culminating in a lovely brunch with Brian and Nicole. The topic of cancer did come up of course, but we got to talk about it in concrete terms that made me feel hopeful that this stupid blip in my life will just be that and we can return to living normal life as soon as it’s over and done with. So he gets on a plane back to Chicago and I’m content. It was a good weekend.

After that I head off to my friend Michael McAllister’s house to do a photo shoot of me looking pensive and pre-chemotherapized. I love my hair so much. I know it’s vain, but I love it. I spend time with it. I look at it in the mirror. I treat it to lots of loving products and expert professionals. Sometimes I treat it to a 5 course meal at the restaurant of its choice. I spend way too much time and money on it and I’m really going to miss it. Michael was great and shot me and my hair for an hour and a half in a variety of outfits in a variety of light. I can’t wait to see how the photos come out. I guess you can see sample #1 at the top of this blog. Not bad eh?

Two more days of calm work before I begin on Wednesday resume. I complete my termination sessions with clients, some of which are harder than others because of the length of time and depth of work we have done together but am glad to have finished with that piece. I spend a lot of time dining and laughing with my friends. On Monday night (Valentine’s Day) my Rabbi/Trainer/Friend prepared a beautiful mediterranean feast at his home complete with VD decoration. It was a beautiful celebration of love.

On Tuesday I received a warm welcome, lunch, and care package from my colleagues at AID Gwinnett. They are so kind to me and make me feel so loved. Tuesday night I had another dinner at one of my favorite places Two Urban Licks with another pack of friends. God I’m gonna miss good food!

Ok, I think I’m caught up with the whole Initial Diagnosis piece of this story. The next volume will begin with my first real surgery at Emory that begins treatment along with my first round of chemo. At this point I’m nearing the end of it so I will try to get more efficient about posting so I can keep it fresh and real. It’s not been so bad, but it’s definitely not been a walk in the park either. Thanks for keeping up with me and walking with me during this journey. Even when I’m irritable and annoyed, I definitely need my family of friends around me to keep me going. So thank you.

Bye y’all!

The Treatment Plan Arrives

I am currently 36 hours into the deployment of the treatment plan that I will describe in this post from last Wednesday and am feeling good. I’ve got that lovely metallic flavor in my mouth that everyone has described, had a little headache this morning and a little fatigue this afternoon, but have basically had a smooth entree into my cure for cancer. And now back to our regularly scheduled story, already in progress.

So initial diagnostics and introduction to the Winship Cancer Institute at Emory University were completed last Tuesday. The official word from the technicians is that each test (PET Scan and Bone Marrow Biopsy) will normally take up to 5 business days to complete results, but each were aware of the diagnosis we were addressing and unofficially told me that as much of the result that could be completed by my 9:30am appointment on Wednesday would be delivered to the physician and that it would be sufficient to begin a treatment plan. Good. There is still discussion of going for a consultation with the physician at M.D. Anderson so I am anxious to get in front of Dr. Langston so we can either move forward with the trip to Texas or settle in to treatment here.

Tuesday evening as I am coming out of the anesthesia from the bone marrow biopsy my parents arrange a meeting with a 68 year old man and his uber-talkative wife that my brother met by reading her blog about their experiences with Mantle Cell Lymphoma at both Emory and M.D. Anderson. The wife energetically presents us with 95% of the story, complete with Excel spreadsheets, and the patient just sits there gently enjoying his wedge salad smiling with his PIC line leads dangling from his bruised bicep like a little girl’s beaded and braided hair. Wife tells us about how he began treatment at M.D.A. five months ago, switched to Emory after the first few treatments to be with his family, and is returning to M.D.A. to complete treatment. She gushes about the high level of care received at the beautiful facility with its large sweeping gardens and terraces and coffee shops and lounges, numerous physicians, attentive nursing staff, and comprehensive emergency services. She describes her husband’s case as needing regular emergency services because of another illness that he has carried for the past 15-20 years that complicated his treatment when his immune system was down during chemo. She seemed to follow each lab value and test result extremely closely and check up on each physician’s choice in a way that was very protective of her husband’s health… it made me wonder if this was how everyone did it. She observed my silence and later commented on her blog about our meeting, mentioning something about my youth and that I was “not ready to talk about my disease” yet. She was both nurturing and irksome at the same time. I guess that’s what a caregiver does.

What I took from the meeting was that M.D.A. is beautiful and progressive and that they treat the typical Mantle Cell patient, someone in their 60’s and 70’s with co-occurring illnesses needing more complex treatment. I also heard that the same protocols were used at Emory and that while they were smaller it was worth coming home for to be around family.

I should mention that many of these discussions about where to seek treatment were made around food. On Saturday my close friend Brent Wilson had a chef friend of his deliver a gourmet feast to my home. On Superbowl Sunday I spent time with my friends discussing the situation over nibbles and champagne while I sent my parents to Nicole Murphy’s home and her in-laws so my parents could meet some people their age to discuss this situation with. On Monday night my friend Matt Von Grabil invited my parents and I to dinner at his home with other friends to dine and discuss and shed more tears. I consciously showed my parents the most important people in my life through food and also read the many cards, emails, texts, and facebook messages that were sent to me so that I could demonstrate just how strong my social network is and how essential it will be to my treatment.

So the next morning finally arrived; my parents showed up bright and early to take me to the appointment with Dr. Langston, medical director of the Bone Marrow Transplant team at Winship. A small panic attack occurred just after we got onto the freeway when the admissions person who had arranged the appointment called to cancel 20 minutes before it was meant to begin because all of the results had not been gathered. “Dr. Langston’s next available appointment is next Tuesday, will that work for you?”

“No!!!!! She can’t do that! I’m a special case and I have to be seen today! My parents are with me and if we don’t see her today we will all have a collective nervous breakdown!!! Please!!!” I plead with her… though I may have cleaned/edited that memory up a bit in the past 8 days. I may have been more demanding than polite.

“Hold on, let me check with her for a second. (pause) Ok Mr. Raybon, come on in, she will see you anyway.”

Thank God.

We arrive and anxiously head into the exam room for what Dr. Langston has to say. She enters the room carrying a 3″ binder with my name on it, clearly there is room for a lot of medical history that will be filled in to this Office Depot purchase. First impressions: she is a calm woman with smart eyewear and a sensible short haircut who speaks in a clear and confident voice with a professorial tone. She is a great educator (she teaches in the school of medicine) which comes across in the careful way she teaches us about the mechanics of lymphoma in general and mantle cell specifically.

So we begin our crash course in what is my disease, how does it work, how is it treated, what will it be like, what research is the treatment protocol based upon, what is Dr. Langston’s involvement in that research, how long will it take, what are the restrictions, what is the goal for treatment, what are potential obstacles, will it hurt, will I die?

Here’s the skinny: aggressively replicating cancer cells will be systematically killed by an aggressive one-two punch from two types of high potency chemotherapy, A and B forms of a regimen called R-HyperCVAD, boosted with a non-chemotherapy agent called Rituxan. There will be 3 initial doses of chemo (A, then B, then A again) lasting 3 weeks each, beginning with a 5 day inpatient hospitalization to monitor for allergic reactions and immuno-responses to this intense dose of therapy, followed by 2 weeks of recovery at home when my immune system will be near zero. After 3 rounds of chemo we will “re-stage” with another PET scan and bone marrow biopsy to determine the effectiveness of the treatment. At this point my understanding of timing gets somewhat fuzzy… so there will be another 3 week course of chemotherapy, an infusion of human growth factor to boost production of stem-cells in my bone marrow, a harvesting and transplant of those stem-cells back into my body which will require a 3-week hospitalization, and then if all goes well, cure?

OooooK. Sounds sciencey. Acutally, sounds science-fictioney. The description of the stem-cell harvest involves removing blood from one vein, placed in a centrifuge to remove the cells, then replacing the blood back into my body. Weird.

Dr. Langston states several times that the goal for treatment is cure, not remission. She says that most cancer patients are followed for 5 years after treatment, but mantle cell patients are followed for 10 years and that with this current protocol (which was developed at M.D.A. and whose efficacy has been tested and written about by Dr. Langston herself) that the success rate is very high. Dr. Langston reiterates the importance of my youth and “modest level of cancer” revealed by the diagnostics to this aggressive treatment as I will be able to tolerate it much better than the typical mantle cell patient who is 30-40 years my senior, and that most literature on the experience of treatment and typical pitfalls will not apply to me.

When asked about collaboration with M.D.A., Dr. Langston responds that the treatment community for my disease is small and that most clinicians know each other quite well and collaborate on problem solving if necessary. However, she is clear that she does not write treatment plans for patients at other institutions and that it would be unlikely that another physician would be making recommendations at her institution. She said that if my treatment requires plan B, C, or D that considering treatment at M.D.A. may be appropriate but that Day 1 at M.D.A. would look, sound, and feel very similar to Day 1 at Winship and would likely be redundant.

Sold. I’m happy. We have a plan and I can do it here! When do we start?

Dr. Langston introduces us to several members of her team that will be coordinating my care and sets up treatment to begin in 7 days with the installation of a portacatheter in my chest to facilitate infusions. “Although it’s more invasive at the outset, it is much easier to have a port installed that doesn’t need daily maintenance or carry the high risk of infection like a PIC line or certainly a normal IV line.” Chemotherapy begins on Thursday inpatient at Emory University Hospital and so the waiting game begins.

The events of last Wednesday left me with a tremendous sense of peace and comfort that I am not going to die. What a relief! The lump in my stomach finally passed! Again, more exposition and less humor. The more real this gets the less appropriate it seems for me to make fun of it. I’m sleeping with my infusion device pumping away for the second night in a row now and am exhausted.

G’nite!

So here’s the story… Part 4

It’s interesting to go back through this story over a week after it happened. If you ask my interns about writing their psychotherapy notes they will tell you that I require them to complete them within 24 hours or risk forgetting the important pieces of what was discussed. They will also tell you that I hate the meaningless word “interesting.” I wish I could have taken my own advice, but I guess this is my blog and I’ll write how I want to. As I write this now I am receiving my first dose of chemotherapy and with every cycle/click of the infusion machine it’s starting to feel more real, so the confusion from those first few days is starting to feel somewhat far away and I worry if I will leave out important bits. I’d like to hurry up and get to the present so I don’t forget the experience so let’s get to it, shall we?

So Michael and I arrive home after that first oncology visit in disbelief. I am pacing around my condo, as I do when I get anxious, and Michael is quietly telling the story to a few key people over the phone. Michael does love that antique flip-phone of his, it’s cute really. My parents won’t arrive until after 7:00 and as it turns out my sister will be arriving in Atlanta around 9:00 that night, canceling the second leg of her flight from DC to Nashville for a bachelorette party. I’m so glad she was able to stay with me that weekend.

Parents arrive and Michael and I relay what we heard at the doctor’s office that day in as much detail as we can remember. They ask a lot of questions that I don’t know the answer to and start formulating an understanding of how to attack the problem. They will be the researchers and help guide me to treatment since I want nothing to do with scary words like “aggressive” and “chemotherapy.” Michael leaves us and we go to get Kristen from the airport and off to dinner as a family, which is a surprisingly light hearted pizza dinner. I make quips about taking Lortab in lieu of snooty beer, as is my typical M.O..

Starting Saturday the information gathering goes full force and the weekend is a blur of emotions for me. My dad and brother are extremely rational problem solvers by nature and start shaking the trees of people they know to find cancer survivors who have sought treatment so they can find the best place to go. My brother connects me to a well known doctor at M.D. Anderson in Houston (the #1 cancer treatment institution in the U.S.) and a private plane to take me there on Wednesday the following week. Dad gets the cell number of Rick Hendrick (multi-millionaire owner of large group of car dealerships in the south) who connects us with his physician who treated him for lymphoma at Duke University. Both connections provide valuable insight into the specialized nature of treatment for this type of cancer. I am grateful for the work they put into understanding what my options are and hope they understand how much I appreciate their compassion and concern. However, the idea of moving away from my home where my family of friends are to seek treatment for some enormous frightening life threatening illness terrified me.

Balancing the rational decision of finding a treatment center that will give me the correct regimen that will knock this cancer out with the emotional decision of having the social support that will be necessary to knock this cancer out was painful to come to. There was yelling. There were tears. There were a lot of bloody tongues with deep bitemarks in them. It was a dance designed to avoid bullying me into a decision I didn’t want to make (because it is ultimately my body) and to avoid offending those who did the necessary research to find a good solution. It was intense.

My parents were sure to include my closest friends in making the decision through closed door discussions out of earshot from me. Everyone was being so diplomatic.

P.S. The whole time this was going on I was looking a hot mess. No shower. No product in my hair. Glasses askew. Scummy PJ’s that had a bleach stain on them. Sweat stains on my old t-shirts. Tear-stained face. Lying in bed with a gross bloody gauze pad over my surgical scar which had suddenly started to bleed and weep. Yuck.

As all of this angst and anxiety were happening there was a steady stream of love pouring in from all sides. Between my facebook update, phone calls, and texts the social network was activated. I could not believe how many people were calling, texting, emailing, and facebooking their messages of love, support, care, and concern. It was overwhelming to think that I had generated this kind of response and I was scrambling to respond with gratitude amid the other discussion. Eventually I just gave up on answering the phone or replying to text messages. I just settled for feeling supported and loved.

The symphony of information that was playing around me also stirred me to begin the process of making meaning of all of this. What is the lesson I’m meant to learn? Where is the justice/injustice in all of this? What is the right attitude to take towards this deluge of information? I decided on the “Why not me?” tack that stuck like a random post-it to my brain from some conversation I heard or some book I read about serious illness. I mean really, I have great health insurance, I have a great family and network of friends, I’m in great physical shape (the trainer was working to make me hot-ER, remember?) and have almost no physical symptoms, I have a job that has given me insight into managing serious illness and is very understanding of people who experience serious illness. Who could possibly be in a better place to fight cancer? I think about the 2 clients that I have had who died and I know that they certainly couldn’t, but I know that I can.

This fledgling insight made the decision I had to make clear for me, though communicating it was not easy. I knew I wanted to stay in Atlanta and need to stay here to have my team hold my hand. As much as “your friends will come visit you” was offered as a response to this question I knew I needed more access to them than I could get in a foreign city. Thinking about purchasing plane tickets, then hotels, then rental cars, then figuring out how much time could realistically be spent in the hospital room with me made the idea of going away seem improbable.

“I will start my treatment in Atlanta. Emory is a great institution. I have spoken with 2 survivors of lymphoma who are good friends of mine who were treated there who are both in remission and highly recommend their physicians and this institution. I have spoken with 2 physicians whom I trust completely who have advised me on making decisions about receiving medical care who tell me about this institution and the importance of having social support. I know at least 15 other physicians who trained at Emory and are excellent healers. I need my family to hold my hand while I go through this and this is where they are. Thank you for respecting my decision.” I said.

My family hedged for a minute, concerned that I was making a life changing decision here mainly with my heart and not the problem solving research they had poured over, but ultimately they support me and will stand with me. The possibility of seeking treatment at other facilities is not ruled out if we learn that Emory is not the place for me, but I will begin here and I have everyone on board. Relax. Breathe. Drink! It’s the Superbowl for chrissake! Cheers!

So Monday rolls around and we get started with scheduling and communicating with the team at Emory. Tuesday I go in for initial lab-work, a PET scan (imaging to determine the density and location of cancer cells in my body) and a bone marrow biopsy (to determine staging and how far cancer has infiltrated my bone marrow). I go into these two procedures as a matter of course, taking them like brussel sprouts that I know I need to get better. That bone marrow biopsy hurt by the way!

The first time I walked through the archway of “Winship Cancer Institute” was surreal. “I can’t believe this is my life, what the hell am I doing here?”

The first time I sat in a crowded room of people waiting for infusion or blood-work was bizarre. “So do all of these people have cancer? Is it as bad as mine? Is it as scary for them as it is for me? Do I deserve to be more scared because my cancer is worse? How do I know my cancer is worse, I haven’t done any research! Does someone here have it worse than me? Which of these people will I look like? Am I the youngest person in this room? Do I belong here? Is it inappropriate that I think the girl behind the check-in desk looks like Rihanna? Is it wrong that I told her so before I even finished having that thought inside of my head and it came across like I was gay flirting with her? Gee, the people behind the desk are so sweet, I hope my parents are taking notice and are becoming more confident in my decision.”

This day was a lesson in waiting around and making the stillness meaningful, using it to keep the mood positive and also to process the gravity of the situation. I am using the film “Life is Beautiful” as a model for making cancer into a game, accepting the horror by making the serious aspects into a game to protect me from pain.

Ok, I’m tired. I think I’m going to try to find some sleep in this hospital room on these 100 threadcount sheets, fluid machine clicking at my side. Sorry this was more expository and less humorous, it’s just been that kind of day. I’ll get through this part soon and get to the present. Promise.

G’nite!

So here’s the story… Part 3

Alright, come on girl… Pull it together.

So first calls are made, the next obvious step is a texting binge. Michael Baker, my surgery companion is first on the list. “can you go with me to the oncologist at 2:45, I have lymphoma?”

Next blast goes to 5 interested friends who i just don’t have it in me to speak to yet “Lymphoma, oncology appointment 2:45, parents on the way, call you later.” The barrage of communication begins here and I learn to start putting off a response until I’m damn good and ready to do it. Sorry guys, love you all and I will get to you when I can muster it.

Baker arrives 25 minutes later. He is great, supportive, still, and suggests pizza for lunch. Perfect, I missed pizza-Wednesday with the boys this week anyway. We putter around a bit, wringing our hands in disbelief, saying things that we think will soothe our worries meanwhile wondering what this new doctor is going to say to me. We also googled him to find a picture, because news like this will likely be better received from someone hot. We squealed a bit when the first result we landed on looked like he stepped out of GQ…. and then we realized that we made a typo. Oh well.

We arrive at the office, criticizing the lighting concept and poor choice of flooring in the main lobby of the building, but were significantly more satisfied with the color choices at the oncologist’s waiting room. The women at the desk were kind but you could tell they knew who I was and were cautious in asking me to fill out their stacks of paperwork.

The nurse leads Baker and I back to the exam room, take vitals, humiliates me in front of my friend by making me step on a scale, and tells us to wait. We checked in at 2:30 and we definitely waited. My work supervisor told me to be sure and record the conversation with the doctor on my phone, so we tested it out.

https://files.me.com/bryanraybon/4xe9e6.mov
(You have to click on the link or paste it into your browser. I think it will download automatically and play in iTunes. I couldn’t figure out how to make stupid WordPress embed the link… stupid interwebs…)

After playing with the phone and laughing a bit, we decided we needed a little dance party so the phone became a little DJ booth; nothing like a little Gaga/Space Cowboy remix playlist to cut the tension. So the doctor finally joins us at 3:30 after walking past the exam room a few times and having a conversation with the patient or whoever in the next room. He looks a bit like a younger Bill Gates, and his name is actually William, so we’ll call him Bill.

So Bill starts speaking slowly, explaining the basics of lymphoma. “There are solid cancers like breast and lung cancers, and there are liquid cancers like lymphoma and leukemia. Yours is called Blastic Mantle Cell Lymphoma. There are 3 classes of lymphoma: regular, aggressive, and highly aggressive.”

“Mine is the first one right?” I said, sitting there with a blank look on my face as he is talking, aware of how much I loathe fluorescent lights.

“No. Yours is the 3rd one. You have a highly aggressive form of cancer, which is why you only noticed the first bump in your groin a few weeks ago and observed it increase so rapidly in size. It is quite rare in the general population and is very rare in people your age. Now take a minute and breathe because I just hit you with a lot. Are you ok?”

“What!?! I have the worst kind? Fuck! No. Really?” I sneer with some weird mixture of anger, disbelief, and sarcasm as though this man is trying to sell me some low-grade car that I’m clearly too bougie/klassy for. It’s like I was just insulted or something. “No, keep going. I’m fine.” I snort.

“Ok, so because this form of cancer is highly aggressive it is treated in a highly aggressive way. You will need to begin treatment as soon as possible. You will have to do a series of chemotherapy, which you will have to do during 5 day inpatient hospitalizations, followed by 2 week periods of recovery at home. At some point you will likely have a bone marrow transplant. I could normally treat you here in my office, but because the chemotherapy is so strong you will need to have a larger nursing staff than I can provide here. I am going to refer you to Emory University Hospital where I completed my residency and oncology fellowship, they are a great institution. I want to start with some preliminary bloodwork here before we make that happen though, so I’m going to leave you here for a moment to digest.”

He leaves, Michael and I look at each other puzzled and in some kind of shock, the phlebotomist comes in and sticks my arm with a “baby needle” to draw some blood, and asks if I need anything.

“A cure for cancer? A Xanax perhaps?” I said.

“I’ll see what I can do about the Xanax. (ignoring the first question) If you’re taking pain medication the doctor may not want you to do that, but I’ll ask.”

Great. I look at the floor, sitting on an exam table for the first time in what I am starting to realize will be a very long series of exam tables and blood draws. Fuck!

Bill comes back into the room to complete the conversation, I ask a few questions, he feels me up a little bit for good measure just to be sure that my other lymph nodes aren’t swollen, and declines to bring me a Xanax for the reason that phlebotomist gave. I could tell he was nervous and didn’t want to have this conversation at the end of his day on a Friday. He actually did a pretty good job of it though. He was quite clear in his explanation and responses to my questions. He acknowledged my anger and fear, normalizing the response. And he gave me hope that it would be treated. He discouraged me from doing too much research on my own since much of the literature and outcomes are modeled on patients that are 30-40 years older than me, but said that my family and friends could do that as they like. He was a bit vague about when treatment would start however. He said he would send records this afternoon to Emory and that if I hadn’t heard from them by noon on Monday that I should call. He then gave me a follow up appointment with him for Wednesday.

We walk out of the office in a daze, unsure we had really heard or understood anything, glad that we had recorded the conversation. On the way back to the car we pass less-hot-doc/surgeon in the parking garage who offers some condolence. I look at him and almost shout “I have the worst kind! I can’t believe this!”

We get into the car and I decide that the whole world needs to be just as angry and bewildered and angry as I am, and since my supervisor had been so eloquent in her text message earlier in the day, I decided that “Fuck Cancer” was a simple enough message to communicate via status update. I got over 50 comments to that status update.

Ok, pause. As I write this I’m about to go off to my final meal before the big show starts tomorrow. I’m getting a port installed in my chest at 12:30 tomorrow afternoon (sci-fi, I know) so that I can begin chemotherapy on Thursday. I have been having a lot of great meals with a lot of people who really care about me and it feels wonderful. Re-hashing this story kindof sucks me into a crappy emotional place so I’m happy that I have people who love me and access to fabulous food. Thanks you all for sharing this experience with me.

Bon appetite!

So here’s the story… Part 2

Ok so I’m in the recovery room with Michael, flirting with the nurses, chatting up anyone who would listen to me about sex and drugs, sitting with an ice pack on my crotch. I was ready to go home so I can come down from this experience with my friends and conduct experiments with a bottle of Percocet. Again things are a bit fuzzy at this point, but I remember talking with my parents and several friends on the phone and having a group of 6 close friends come join me at my place for dinner. There was laughing, there was food, there was love. All things considered, it was a pretty good day. I went to bed that night, waiting for my opiate buzz to kick in, feeling at peace.

I woke up several times during the first two nights in a significant amount of pain at my incision site. If you’ve never thought about the utility of the muscles in your groin before I invite you to consider it for just a moment. Sitting up. Sitting down. Walking. Rolling over in bed. Sitting on the toilet. Eating cookies. You use those little muscles for EVERYthing and when the range is limited it sucks! The incision site was thankfully covered in a tight wrap so I didn’t have to look at it for the first 48 hours, which is good because I was actually quite lucid all week long as soon as the meds from the first day wore off.

Narcotics are so disappointing. Seriously, why do people get addicted to Percocets and Lortab? Was I doing it wrong? Should I have been crushing them up and snorting them? I mean, the instructions say to take 1-2 pills every 4-6 hours. I was taking 2 at a time every 4 hours, like a responsible adult, but I never got high only sleepy. I guess I’m not such a skillful drug abuser after all, at least they didn’t make me nauseous and did dull the pain. So I gave up after 5 days.

So during the week I was waiting for the results of the biopsy with nervous anticipation. The nurse told me that it would be 3-5 days before the pathology report came back, which made Thursday the earliest and likely Friday the day that I would get the results. I did my best not to read too much during the week so I didn’t scare myself. However, there is only so much daytime television you can watch without turning to the interwebs for some kind of entertainment. I read about “inguinal lymph node biopsy” on WebMD, MayoClinic, and WrongDiagnosis.com to figure out what the hell might be going on. The doctor mentioned that it was probably an infection, so I started ruling out the common infections that are experienced with this symptom.

1.) Toxoplasmosis – An infection usually experienced in immuno-compromised people who have had exposure to cat feces. Symptoms are flu-like and include swollen lymph nodes. Well, I had no flu symptoms and I’m allergic to cats. So unlikely that this is me.

2.) Cat Scratch Fever – It is what it sounds like. I had no fever, and am allergic to cats. Not me.

3.) Mononucleosis – The kissing disease that I got in high school (from some girl no doubt… gross… ) Again, flu-like symptoms and fever. I had neither of these and should technically have the antibodies for immunity, so this is unlikely me.

4.) Secondary Syphillis – Aside from having no fever or other typical symptoms, I would find this very surprising. Just sayin…

5.) Cancer, such as Leukemia or Lymphoma – The most common symptom of non-Hodgkin’s lymphoma is a painless swelling of the lymph nodes in the neck, underarm, or groin. Other symptoms may include unexplained fever; night sweats; fatigue; weight loss; and red, itchy patches on the skin. Um… yeah… I have just the one of those symptoms.

Oh the mind games that the interwebs can play on you. I needed to get the hell out of my house and away from my computer, so I decided to go back to work on Thursday for a few hours. This was the first time I was confronted with telling my story to every person who laid eyes on me; when you walk with a limp people tend to stare and ask questions. Back in December when I was with the trainer I walked with a limp and people laughed at me for my self-inflicted wounds… this time it was a bit awkward when people who didn’t know what was up were being clever. Quips like “Oh, are you working out with the Rabbi again? ” were met with a sortof awkward “um… no… actually…”

My crotch was hurting again after about 4 hours and I knew I only had a few Percocets left, so I went home and called the nurse from the surgeon’s office to get a small refill. Somehow I let it slip that I had gone to work, which was actually against the rules laid out in the discharge plan, so she basically forced me lie to her when she sucked her teeth and asked if I had driven to work. Oops. “No, I had someone pick me up.” Liar. She told me that the doctor would probably be calling me in the morning with the results of the pathology report and that she would call in a prescription for Vicodin (which actually turned out to be Lortab). Mmmm… pills… I think I’ll have a few and just ignore the first part of that sentence.

So I laid low all evening and decided to go ahead and “call in” to work for the next day since I had “over done it.” Buffy the Vampire Slayer had always been good wholesome entertainment for me during my early 20’s, so I put on a few episodes and tried not to think too much. I woke up in the morning to pouring rain… an ominous sign. I laid in bed trying not to think about the doctor’s call and put on another episode of Buffy. I don’t remember which episode was on but the themes of death and pain and alienation are thick in this particular season… not exactly the comfort I was looking for.

The phone rings. Teeth-sucky-nurse is on the line with significantly less attitude. “Richard? I’ve got Dr. Wilson on the line for you, hold on a moment please.” Less-hot-doc gets on the line “Hi Bryan. Well I’ve gotten the pathology report back and I’m afraid that I have to tell you that it has come back as a Lymphoma. I don’t know enough about these results to explain it to you so I want you to call an oncology colleague of mine and see him this afternoon. He is expecting your call. I’m very sorry to have to tell you this news.”

Fuck.

Fuck. Fuck. Fuck. Fuck. Fuck. Fuck. Fuck. Fuck. Fuck. Fuck. Fuck!

What do I do? I had intentionally exposed myself to a rudimentary understanding of lymphoma because I knew that was a possibility, but I have no idea what the hell this news actually means. First thought is to call my dad. He answers after 4 rings and is stepping out of a meeting when he answers. With quavering voice and tears just below the surface I repeat what the surgeon had just told me. “Shit” he says. “Shit. We need to tell your mother and sister. Let me try to get them on the phone and I’ll call you right back.”

I put my head down for a minute, letting a few tears fall. Fuck!

Next thought, call the oncologist. I dial the number I had scribbled down and get a friendly southern bell on the line, “Ah-lan-ah Hemah-tawluh-gee Ah-so-shits, how may ah helllp youewe?”

“Um, I was just diagnosed with lymphoma, I need to see Dr. Jonas this afternoon. I’m a new patient.”

Surprised, she says “Hold on a minute. (pause) Can you come in at 2:45?”

“Yes, I’ll be there.”

Next thought, call my hospital job and cancel my shift on Sunday. “Kim, I was just diagnosed with lymphoma, I don’t think I’m going to be able to make it in.”

“Oh honey I’m so sorry” she says sweetly “let me know if there’s anything you need or anything I can do.”

Dad sure is taking his sweet fucking time calling me back, why isn’t he on the fucking phone already? “Your mom and sister are too upset to talk right now….” Insert some supportive/bewildered dialogue here, I don’t remember it too well. I just remember pacing around my condo in my bloodstained totally uncute undies, listening to the rain, scared to death that I was going to die.

Whew! Insert dramatic pause here! This is not easy writing for me, so I apologize for the break. I need a sec to compose myself and go back through this memory later. My former partner Rob is in town with me this weekend and is being tremendously supportive so I think I need to go pay attention to him for a minute. Perhaps we’ll go play in Piedmont Park for a few minutes, shop for our dinner tonight, and play some Angry Birds on my new iPad.

Bye y’all.

So here’s the story… Part 1

Hey Everybody,

So, I never thought I’d ever have anything interesting enough in my life to blog about. I mean really, isn’t Facebook enough? 140 characters is all I’ve ever really needed to say what I need to say when a thought pops into my head that needs sharing, so the open format of a blog seems a bit self-indulgent and narcissistic to me. Ok, bullshit. If you know me then you know I’m not that humble and I do love an audience… so here goes.

I have cancer. Specifically I have Blastoid Mantle Cell Lymphoma. I found this out last Friday and have been trying to pull it together since then. Woah. As I read that sentence it seems like a fiction, I still can’t believe this is my life but here it is. If you really want to know what my disease is then I suggest you google it or look it up on wikipedia or something because I really don’t have a great understanding of it yet since I’m too scared to do either of those things and they have specifically told me not to. At this point though I guess I can tell you what I do know and how I got here.

So December 2010 I started working out with a trainer to shake up my workout routine and get hotter. (yup, hot-ER) I’ve been working out regularly for over 10 years now and I figured it was time to do things a little smarter so that I could make better use of the 10 hours/week I was putting in at LA Fitness. The workouts were great! I know this because I was in excruciating pain and barely able to walk so I figured I must be doing something right.

So just before New Years I noticed a tender little bump just above my junk (yeah, I said “my junk,” you know what I mean) that I thought might be a hernia. I had been using a lot of unfamiliar muscles in these new routines so I figured I just over-did it that day. No big deal right? So I go to my primary care doc a few days later to get him to check it out. I take down my cute red undies (my doc is hot you see, so I had to dress up for the occasion) and he says “Wow, great hernia! You need to go across the street to see my surgeon friend right now to get that taken care of, we don’t want it to go all gangrene.” My heart starts to race a bit, I’ve never had any medical problems before unless you count having mono in high school and wisdom teeth extraction in college. I thought this surgeon was gonna start cutting on one of my favorite parts of my body in the next few minutes! I had no time to prepare! Manscaping was not enough!

I get to the surgeon’s office with my blood pressure elevated and take down the cute undies again so this older and significantly less hot doc could take a tour of my naughty bits. “Nah, that’s no hernia” he says “that’s just an enlarged lymph node, it’s no big deal. Those things tend to be either nothing or some type of infection like cat scratch fever. There’s a tiny chance it could be tumor but that’s remote. Take this antibiotic (Bactrim) for a week and follow up with me in 3 weeks. If it’s completely gone by then you can just cancel the appointment. ”

“Whew! Great! Drugs not knives. I wonder if I can still drink on Bactrim?” I think to myself. You know I googled that shit on my iPhone immediately and was happy with the results. So I take my drugs religiously for the next week and take off from the gym just for good measure… any excuse to be a lazy bum. The bump goes down a small bit (I think) but blows right back up the day after I stop the antibiotic and get back in the gym.

I wait around for another few days to see what happens. At this point I’m still 2 weeks from my follow up appointment and I don’t want to be a pest or a hypochondriac, “Bitch be cool” I tell myself. By the end of the week though, my dad convinces me to call the doctor back just to see what he thinks since the bump (which I had officially named Ned at this point) was steadily getting larger and it seems that Ned Jr. was growing on the opposite side of the twig. I talk to the doc on a Friday and he says I can come in a little earlier if I want, but no worries if I wait another week. I decide to go in the following Monday just to be safe. I was already googling cancer at this point trying to freak myself out, so it seemed like it was time to go in for another look.

I get to the appointment and older less hot doc says “You have 3 options: we can do nothing, we can aspirate it (poke a hole with a needle and suck out some fluid), or we can do a biopsy. I would prefer to do option 3 since there is a 5% chance of tumor and an aspiration would probably not provide a large enough sample for the pathologist to read. A biopsy is a minor surgery with anesthesia that is done in an outpatient surgical center and will take a few days to recover from.” I tell him that I’m comfortable with the biopsy because at this point I just want to know what the hell this little guy is, growing up around a neighborhood he doesn’t belong in. Also, there might be fun drugs involved.

Surgery is set up for one week later at Piedmont Hospital, approximately 1 month after I first noticed Ned. I’m a little annoyed that I can’t do it any sooner but figure that if the doc isn’t in a rush then I shouldn’t worry. I tell my dad about it immediately and he thinks this is a good plan. Mom wants to come up for the event, but I tell her not to because this seems pretty minor and I don’t want her to worry… or baby me. Also, it’s surgery on my junk and I don’t want her tending to my junk.

A week goes by and I psych myself up for minor surgery, I really am kindof excited about it to be honest. I’ve never really had anything like this before and it seems interesting. Plus, narcotics right? Haven’t had those since my wisdom teeth were taken out and I’m certain that I could be a more skillful drug user at this point. (Sidebar: I’m not actually a drug/alcohol addict, I’m really just being kinda silly). My dear friend Michael Baker offers to take me to surgery, stay with me, and take me home.

So I get admitted to McDonnell Surgical Center and start bantering with the nurses as I trade my new 7-for-all-Mankinds for a lovely hospital gown that barely ties in the back. Baker is allowed back to my room and we play a little bit with Grindr to see what kind of trade we can pick up while we wait for the show to get started. The nurse starts an IV and gives me a bag of fluid. The anaesthesiologist comes and asks me a bunch of questions that I answer “no” to. The surgeon comes and gives Ned a shave (goodbye dignity by the way, it’s really just an elbow down there anyway) and tells me to relax and get ready.

I go in for the procedure and get Versed (the benzodiazepine, not the bible) which makes me loopy and then Fentanyl (anesthesia and/or Michael Jackson’s version of Unisom) which puts me right out. I sleep really really well until I wake up in the recovery area, disappointed that I have to rejoin the world of the living. Things get a little fuzzy at this point, but I’m sure there were instructions given about taking care of myself and taking pain medication.

Alright, this seems like a good start on the story and also a good stopping place for tonight. I’ll pick up again tomorrow and try to post updates to Facebook.

Goodnight my dears!