Happy Christmas, (war is over).

It's Christmas eve, and Brendan and I finally started and completed our present buying in under 2 hours - impressive. I hadn't seen Brendan since he dropped me off at the airport almost two weeks ago, so when I met him at the store last night I was shocked to see big fluffy eyebrows, the shadow of a day without shaving, and a layer of fuzz all over his head.
Brendan's hair has come back, and it came back fast. The top of his head feels like the softest belly of the softest puppy. His eyebrows are even bushier than they were before he lost them, and it looks like he will have to start shaving again.
2010. The year of things that happened so fast.

In the past two days I have talked to two close friends who never even knew Brendan had been diagnosed. I hadn't seen/talked to them since the summer - and now here we are - salting the sidewalks to keep away the snow. Concentrating light waves to eliminate any stragglers.

Yesterday was day 1 of 15 for the next phase of treatment - radiation. For the time being, Brendan's chest is now covered in black marker, and each mark is blanketed by "stickers" - protective measures from the threat of bath-time elimination. The other new addition to Brendan's body - 3 small tattoos. Brendan has 3 blue freckles, one on each side of his torso, and one in the center, near his sternum. All of this just to make sure they line him up in the right spot each time. It is a quick process, like a very loud x-ray, and Brendan feels nothing. Although, he said that didn't stop him from closing his eyes tight and twisting his head away just in case...

The port gets removed soon as well. Brendan looks and feels like his old self again.

Eventually this will be a memory marked by scars and freckles. Marked by a new family foundation. Marked by woven bracelets and the gradual tapering off of doctor's visits. Marked by strength and adoration for our hero. Marked by victory.

Thank heavens

Tonight, Brendan (freshly sans eyebrows) and I settled down in front of the giant tree in Dad's living room to watch a movie I don't expect any one else in the world to know about - let alone love as much as we do, or laugh quite as hard as we do at the video clip above.
We hadn't watched it together in years, and as it progressed we were constantly reminded of the hilarious moments we love and all the times we would continuously rewind to hear our favorite jokes over and over again.
It was during 'My Father The Hero' that Brendan's phone rang, Dr. Rose on the other line.


The PET scan results are in.

Clear. They're clear.

Brendan's chest is clear.

Clear.


Of course he will still go through radiation. And just because his chest didn't light up doesn't mean there aren't small amounts of cancer hiding out and sneaking around. But just as the real snow starts to pile up in this frigid Chicago December, that mound of metaphorical snow that Dr. Rose had told us about that horrible day in July has been diminished.
Sometimes the heat of July seems so distant. I remember driving to see Brendan that night, and none of us talking directly about anything for the first 20 minutes we were all together. I remember the air in the room when we finally did. I remember my legs sticking together underneath the skirt I wore that first trip to Dr. Rose's office. I remember how bright the sun was that day. The headache I had. The night I spent in my small apartment scared and crying harder than I've ever cried, deafening the ears and soaking the shoulders of someone I had loved. I remember it happening very fast.
So here we stand. Stronger people. A stronger family.
The strongest brother.

Brendan is hoping to get in to see Dr. Rose right away tomorrow for some blood work and to plan radiation. Getting it done this year means getting it done before the new insurance cycle rolls around and we have to start from scratch - working through the deductible before things are covered. The more he can get done and the sooner he can get it done the better.
Cancer treatment is expensive

Brendan is visibly stronger. Visibly happier. Visibly balder.
I've never appreciated or admired him more.

[exhale]
clear.

brentuximab vedotin

(Reuters) - A pivotal trial of Seattle Genetics' experimental cancer-targeting antibody for patients with Hodgkin's lymphoma found that more than a third of them achieved complete remission of their cancer.Seattle Genetics had said in September that 75 percent of the trial's 102 patients had remissions or tumor shrinkage of at least 50 percent. The trial involved patients who had stopped responding to standard treatments for the lymphatic cancer.
Brentuximab vedotin links a tumor-targeting antibody to a cancer-killing chemotherapy drug with the goal of limiting side effects. It is designed to home in on an antigen expressed in Hodgkin's lymphoma, several types of T-cell lymphoma and other hematologic malignancies.

This story is all over my internet-based news sources today. How exciting!

More general updating is soon to come - after a much needed break from the stress of treatment, Brendan had the intensely anticipated PET scan two days ago. We are waiting for those results, which will dictate the next step of treatment.
As I wrote in an email to a friend earlier today - other than the slight nervous energy around the results of the PET scan, everyone is breathing easier these days. There is a change in Brendan now that he isn't being poisoned every week. His laugh is more genuine, he seems more relaxed, and he has been able to enjoy a vacation to Scotland and late nights out with his old friends.
The differences are slight, but they are there.
We're okay.


EDIT/UPDATE 1.14.2012 
The FDA just added a new warning about this drug as a few people have developed progressive multifocal leukoencephalopathy (PML), which is a rare but serious brain infection.

Brentuximab was approved by the FDA in August 2011 for the treatment of Hodgkin's lymphoma and systemic anaplastic large cell lymphoma. At the time of approval, 1 case of PML was described in the warnings and precautions section of the label. So there are now 3 cases associated with the drug.
The signs and symptoms of PML can develop over the course of several weeks or months. They can include changes in mood or usual behavior; confusion; thinking problems; loss of memory; changes in vision, speech, or walking; and decreased strength or weakness on one side of the body.

Halftime

Today was Brendan's last day of chemotherapy.
[deep breath]
On Tuesday he will fly across the pond to spend some time with Heather, and have himself a small vacation before entering round 2 of Operation Defeat Cancer - radiation.

I'm assuming another PET scan will be coming in the next few days as well.
I'm sure you all know by now how anxious I've been to see the results.

These weights.
It's hard to sleep with them pressing on my chest.
I'm nervous - just as I was when he was about to start treatment. That helpless, uneasy, unsure sort of anxious. I am not quite sure what reasonable expectations are - I only know what I hope to hear.
I want it gone. I hope it's gone. I know I shouldn't expect it to be gone - that it won't be gone.
I just want it gone.

Look at that FACE

The Road Trip to Restore Sanity and/or Fear was originally going to be a sibling adventure - with some friends to join us. But due to Brendan's treatment schedule (a double week, Thursday and Friday) and the fever of recent past, he opted to stay at home and play it safe.
This picture was in a text he sent me on Sunday that read HAPPY HALLOWEEN!

Here he is, in our old house, making his best skeleton face.

LymphoMartini by Tom Music

Tom Music is doing what I am doing - except his is a first hand account.

...and he is wittier, more charming, and more informative than I am. He was also genius/hilarious enough to make a graph of his hair loss! His entries start here and go on for the past year.

Comrade.

The Genesis Tub

Brendan is almost done with chemotherapy.
It's already October.
Three more weeks worth of sitting and accepting poison. Three more weeks until they scan him again while I silently plead to fates I don't believe can actually be influenced by begging and/or pleading that all those poisons they pumped in to my brother were not in vain. That he didn't endure 12 weeks of this to have lymphoma hold down the fort.
The other day, mid-conversation, I reminded myself that there is a not only a possibility that if the cancer leaves, it could come back, but that the treatment can also cause leukemia.
It worries me that Brendan still has eyebrows and eyelashes. Which sounds weird and awful. It's because Brendan once mentioned Dr. Rose comparing extreme loss of his hair to "knowing we really got [the cancer]."
I hope we can still stick it to that man with eyelashes and eyebrows intact.
Maybe Dr. Rose was just finding a way to comfort him through the hair loss.

I don't know, really, what to do if that giant pile of snow remains.

Brendan had to spend a couple of days in the hospital after encountering a fever of 102 and a strikingly low white blood cell count. I was in the middle of working at an understaffed restaurant when I read the text from Dad telling me Brendan went to the ER due to that dangerous increase in body temperature. I suppose the hospital is the safest place he could be - and you'd think that would serve to diminish any worry. You'd be wrong.
They strung him up to a bag of antibiotics and waited for to see if a primitive society would grow in a pietri dish. He took his own temperature often. He complained of a headache and boredom, but nothing else. I stopped by to hang out, bring him edible food, a toothbrush (soft - chemo is mean to your mouth) and chorus of laughter at the plastic bag of wet rags they brought him to clean himself with. I returned to pick him up 36 hours after admission at 8am - and he went right back to work that day.

I didn't expect the age of "everyone is getting married/having kids!" to coincide with "...why is everyone getting cancer?". Maybe it's because my ear is pressed to the train tracks, listening intently for the slightest vibration. Maybe this is how it has always been - a dominant existence within the intricate lattice of my social web. If that is the case, it makes me feel selfish to be so invested in the unified hatred of disease so late in the game. Although, it is an odd relief that sweeps over me when I find someone else who is enlisted in this army.
Comfort in comradery.

I won't ever get used to this. Maybe that is something I can get used to.

Now that treatment is halfway complete, Brendan and I have decided we need to get cracking on our gift for Dr. Rose. We've decided on getting him an additional magnificent tie or two to add to his collection - since those ties have been a highlight of his appearances throughout Brendan's treatment.
So.
If you know a place...

...and the fire rages

(worry)

I am nervous because I know tomorrow will be the start of a rough cycle.
There is nothing I can do.

A family friend wrote recently to check in and send love, and also share an amusing story she had about a friend who, while enduring chemotherapy, had all of her nose hair fall out and was left with an annoying case of constant runny nose. Last night when Brendan walked in to the theater with a pocket full of kleenex that is what I expected, and my eyes shot up to his eyebrows to make sure they were still there.
They were. He is just fighting a cold.

Fighting a cold (worry) right before the biggest immune suppressing round of treatment (worry).

There are moments when I have to look twice before I recognize Brendan. I quickly adjust, but the first time he enters my field of vision, it takes a millisecond longer to recognize that the tall, thin, bald guy is my brother.
Tonight I was looking over old Tumblr posts, and saw the original one I posted for the start of this blog. I held my fingers up between the screen and my face, closing one eye, covering Brendan's hair to see if my version of bald Brendan actually looked like bald Brendan.
The jury is still out on that one.

Light the Night

Light the Night is a much bigger production than the Lymphomathon - live music and a VIP tent with alcohol and other luxuries, they had a seemingly endless supply of food (pizza) to give away, other free things, there were far more people, and of course - our light up balloons. Carriers of red balloons were supporters, carriers of white were survivors, and carriers of gold carried them in memory of someone lost.

The walk was a nice 2 miles out of Grant Park towards Roosevelt, through the museum campus, along the lakefront (with a beautiful teal skyline view). We had a militia of 20 for the walk, all looking beautiful in our bright purple shirts.

Saturday began early, it was moving day for my cat and I. Brendan and Dad were the heavy lifters, carrying and maneuvering the bulk of my furniture through narrow doorways, hallways, and elevators. Only once, while doing a final scan of the apartment we were leaving, did I see Brendan stop and close his eyes for a moment, swallow hard, and breath in deeply. He responded to our concern with nonchalance - that he was fine.
We arrived in Grant Park, on the corner of Columbus and Balbo a little after 5:30 and it was already crowded with plenty of people, and there were no tables to be found. We registered quickly, got our balloons and shirts, made a sign, and eventually located a spot to set up camp with a handful of chairs. Brendan, Dad, and I tossed a football around before the team started to show up - Brendan throwing it in perfect spirals long distances to my awkward dog-bitten hand. I dropped 98% of the passes. To add to my display of athletic prowess, I proceeded to throw the ball back with a wobbling, warbling clumsiness.

The walk started at 7, and we spent the first few minutes of it fighting to keep our respective balloons up, shining brightly, and not bumping in to heads and other balloons. Then onward through the night we traveled.
There was a team that ended up just in front of us at the end of the walk, and who had set up camp near ours before. Their shirts carried the name of their hero, and two dates - the most recent being 9/3/10. They carried gold balloons.
"I never want to carry that gold balloon." I said staring ahead at the cluster of them in front of me.
I don't, and there is a part of me that actually believes I will never have to - because Brendan just carried my couch and my bed and my tables and bikes and heavy boxes...twice. Because Brendan, while carrying a white balloon, refused all other identifying offerings that he has cancer. Because Lymphoma is something that Brendan will be able to beat the way he beats a cold. Because I cannot begin to imagine...

We ended the night in a circle around a fire built in Dad's yard. Smores were made, drinks were had, dogs were mingling, and we were being so very loud and laughing so very hard and making a ruckus until roughly 1:30am on a perfect autumn night. This morning, I can still smell the fire in my hair.

Thank you to everyone who walked, who donated, and who loved and laughed with us all night.

Hurricane Hodge

Light the Night is tomorrow night, and our world seems a little different than it did in August. Brendan is in the eye of the storm of his treatment, Dr. Rose promises that it will get hard again - and that it will get hard soon. His white blood cell count falls and rises. He lives as if he doesn't need to rest. We worry, some times we get scared - but we're mostly just proud of him.

I was bitten by a dog last night, shrill little puncture through the muscles that control my thumb. My hand throbs and aches - and each time I summon my voice to yelp or sharply inhale with a wince I scold myself for being selfish.

My grandmother is a photographer of sorts - thousands of pictures of mostly nothing of importance, nothing spectacular. While weeding through them my Dad found a handful that are striking - beautiful and intricate lighting. Smiling, grinning images of our past. Warming and heartbreaking pictures of our family. The one above is of Brendan and I.

The two of us drove down to Urbana last weekend to see the Illini/NIU football game. Brendan forgetting sunscreen for his majestic bald head and thus wearing my zip up hoodie over it like a cape. During the drive I finally asked him when he would be scanned next - to see how things are working. He told me they would do it after chemo was over, that they would use the next scan to dictate the next phase of his treatment. This Thursday was the 6th week - the halfway mark. Next week is going to be a hard one - two rounds of poison. The return of side effects.

Mom got a bunch of car magnets for us, and had little refrigerator ones made too. A purple ribbon and a green ribbon for the cars, and a green circle that says "My Brother is my Hero". She has enough ribbon magnets to decorate a fleet of vehicles - so if you'd like one, let us know! She got them to hand out to anyone willing to show their love.

He takes it in stride. We are getting better at taking it in stride.
We will be taking 2 miles worth of strides tomorrow night - Light the Night in Grant Park.

It's not to late to join us you know...!

Vignette

Brendan: I'm bald now, I shaved my head

me: shaved it shiny and smooth?!

Brendan: yup...lil stubble now

Brendan: gotta go get poisoned, ttyl

me: HA! okay good luck!

Revolve in Peace

September is almost half way over, and I can't even remember it starting.
Brendan has discovered the routine in this treatment, and can now predict the highs and lows of his side effects. This is a good week. A week free of nausea and the twice a day pill he would have to take to try and chase it off. A week free of most of the nagging awful feelings that follow him around. There are good weeks like these, and then there are the awful weeks - periods between treatments where the pills are taken in vain. Where there is no adequate defense against the inevitable.
Good weeks are spoiled, of course, by the newest addition to the side effect menagerie: bone pain. Neutropenia - neutrophil deficiency - is a side effect from chemotherapy, and so in response to this, Brendan gets a daily injection in order to attempt to keep his neutrophil count reasonable, healthy, and his immune system capable. This injection has it's own set of side effects however, which include the aforementioned bone pain - which Brendan describes feeling like a deep aching - arthritic. He has only felt it in his jaw and head, but Dr. Rose promises it will soon be dancing through his pelvis, hips, and femurs.

Brendan has been liberated of shaving for 10 days now - as the chemotherapy attacks the most rapidly growing hair first. The hair atop his head is thinning, and he said soon he will just shave it off and be done with it. Dr. Rose says his eyelashes will be the last thing to go - but that when they do, we'll have gotten the beast.
I hope he isn't just saying that.
Each time I talk to him, I want to ask if he has gone through another PET scan, just to see if it is shrinking - if the treatment is working. I never ask, because I assume that this is, of course, a foolish question. To try and visualize progress minutely along the way can't possibly be beneficial. I know it is just the desire - the requirement - to know that there is a justification for my little brother to be enduring all of this. That the thing inside of him is actually shrinking away.

I got a random email from mom a few days ago while I was down in Urbana for Danny's funeral. It was written in all capital letters (oh, mom) and had zero punctuation - which is actually rather appropriate: "I am doing fine most of the time every now and then I get little attacks of anger and frustration over the way chemo is affecting Brendan".
Because there is something wide eyed, desperate, and frantic about the way we all feel about this. We watch, and hear him go through this, but he only "complains" as much as he thinks is reasonable and never as much as he has the right to - or as much as anyone in his situation should.
He just...does it. Brendan talks to me about these shitty things as if they were adventures that oh, of course he faces. He conquers every day with an air of nonchalance and confidence. He swallows pills and pain and sweat and fear and nausea and the world in stride. Any time I ever hear the faintest quiver or hesitance in his voice, it is devoured. He does it because he has to - these are tasks and challenges to accomplish and overcome and he does them swiftly and with an apparent elegance.

The people's evidence 1A: a text message I received shortly after one of our conversations:
"Oh yeah and I forgot to tell you...Dr. Rose was wearing a tie with all the planets on it...and yes it had Pluto."

7 Deadly (poi)Sins

"Well, is it like, shedding? Because I shed - my hair falls out all the time. Maybe you're just shedding?"
"No, I've been running my hands through my hair, testing it since I started treatment - it's only just started coming out."

I know without investigative measures that it isn't vanity Brendan is concerned with - he is worried about looking sick. This is the person who was at work the day he got his wisdom teeth pulled. This is my brother, who fights nausea throughout a 5 day work week helping patients through their physical therapy treatments. He swallows pill cocktails and gets 7 different types of poison pumped through his veins once a week and still dances harder and sings as loud as I do while seeing the Beach Boys play Ravina (best show ever by the way). He goes to the gym every day and drinks twice his body weight in water and looks like the youngest, healthiest, most vibrant gentleman on Earth. No one would ever know. Ever.
Now...they might be able to guess.
Cycle one of his treatment is complete. It has been three weeks since he has started. Less than two months since we found out. Roughly two years he's been harboring it. Some days I feel like I forget the weight of the entire thing - I stare at the bracelet that I tie to my wrist each time I get out of the shower and feel guilty about being forgetful. Today is a day when I feel powerless to stop this thing. I have to imagine that the side effects are only a display of the drugs at work.

Danny Sullivan was my stage manager (a title that does not do him justice) during Lieutenant of Inishmore at the Station Theatre. He has been fighting cancer for years now, and about a week ago, I got word that it had devoured his brain. Danny Sullivan is going to die this weekend. I won't make it down south in time to see him before he leaves. Losing Danny is a tragedy for that small town, for the theatre, and especially for the people who knew and adored him.

I can't help all the dread and fear that is resurfaced lately...or the frustration with how counterproductive it is.
I do know, however, that Brendan isn't going down without a fight - rather, isn't going down. From day one there was no other option, idea, or outcome other than the defeat of this cancer.

Brendan always sends me a draft of his medical school essays before he submits them to the schools, and I proceed to tear them apart, write him new sentences, fix his grammar, and go to town with a metaphorical red pen. The jist of these essays, is a page or so explanation of why he would be an asset to an institution, or the medical community. Granted, Brendan isn't a great writer, but I come down on these essays extra hard because there is no way his words can adequately express just how intelligent and talented and logical and driven and determined and delightful and funny and great he is. There is no way to let these strangers, these invisible judges of our numbers and paragraphs know how fucking lucky they would be to have him going to their school. To have him in the professional world as an ambassador for their educational prowess. Luckier than they would be to have me, that's for damn sure.

I've been having vivid, lengthy, and intruding dreams lately. There is no mystery to their origins and no enigma as to the service they are providing the waking version of myself. The fire is raging. We are walking through it with clenched teeth, squared shoulders, and deliberate strides.


[edit: Around 4pm today Danny Sullivan's battle ended. To Danny...]

Lookin' fine as hell...

The photos from the Lymphomathon are finally up!

...for tomorrow we [refuse to] die.

The day after I found out Brendan's diagnosis, I spent way too much time on the internet learning everything it could show me about the cancer, volunteer opportunities, t-shirts, wrist bands, car magnets, survivor blogs, treatments, charities and organizations. It was the only thing I could think to do in order to make a feeble attempt on getting my hands on that cancer. When I sent an email to Brendan and my parents asking if they would do the walk with me, I didn't mention how much I had needed them to say yes. Especially Brendan.
I never, ever expected anything more than the four of us sauntering 5K on a Sunday afternoon.

On Wednesday, July 21st I sat in the library with Josh and told him I wanted to do this walk and asked him to help me think of a team name while we studied for the MCAT. I had called Brendan a few times to throw names around, everything we could think of was funny - but totally inappropriate for a walk in broad daylight where there would be children, the elderly, and people we did not know and who did not know our sense of humor. A lot of really bad puns were tossed around in that library, and no one was thinking about inorganic chemistry.
By July 28th a bold $810 stood under the team name Walking 'phoma Brother on the Lymphomathon website and would continue to smash onward and upward.

Then suddenly it's late August, and it has been a difficult month for everyone. Brendan finds out he has to get his wisdom teeth pulled before he starts treatment, so on Wednesday the 18th bright and early he gets them removed from his head - and then goes to orientation for the PT job he has just started. I get a phone call while taking a practice MCAT in the library from my mother. Her exact words through a shrill voice are "WHAT ARE YOU DOING YOUR BROTHER NEEDS YOU." The minute delay that it takes her to explain the situation feels like eternity after hearing that. His mouth hurts (obviously) and he needs Vicodin (obviously) so can I drive to Morton Grove to pick it up and bring it to him at work (of course I will).
Thursday - Brendan's first day of treatment. The actual course of it all only lasts 20 minutes, but it takes 45 minutes to get him ready. He is feeling fine after and even drives out to Dekalb in order to gather letters of recommendation he needs to get the ball rolling on his application process to medical school. So far so good.
Friday - I called Brendan, who is at work, from Daley Plaza to tell him an hilarious story and he only sort of snickers at it - nausea has kicked in, and the medication they gave him to fight it hasn't. He says he will still be up for going to see Elsinore play some rock and roll with me later that night though, and wishes me luck on the MCAT. Later that night he calls me back and tells me he doesn't think he can make it - he just isn't feeling good.

Montrose Harbor was hot and sunny and beautiful on Sunday morning. I got there before it was anywhere near crowded - and found our tent with ease. We set up a table and some chairs in a circle, I tied a red balloon to the top of the tent and looked around anxiously for team members to arrive.
There is no way I can explain the little moments that created the bigger event and how meaningful it ended up being. Our total is still growing so I can't say what our final amount raised actually was - but it will most likely be $4,000.
Granted, on most days my brother looks invincible, but on Sunday he was invincible. I know part of that had to be because 40 people...40 people...were there walking behind him (literally...he walks really fast and I had to actually call his phone and tell him to stop and wait for everyone). But that lime green and purple (and white) army was huge, and beautiful, and so generous and kind and I can't begin to thank each and every one of you enough for being there and showing your support.
At the end of the walk, a woman came up to us and asked if we had any extra shirts she could buy. Although I had to say that we didn't, one of the team members just pulled his shirt off and gave it to her - and she went on to tell Brendan and I that she is a survivor and that her brother is recently diagnosed. She gave Brendan her contact information. She was wonderful and heartbreaking and kind and insisted on shoving $20 in Brendan's hand for the shirt she took - so we donated it right back to the Lymphomathon.

I got home late that night after having to be at work, and sat down at my kitchen table, exhausted. I was still wearing my green shirt that smelled like sweat and sunshine. My cat was bumping up against my leg. My feet hurt. I opened my computer and all the letters blurred together and something inside me decided this was a good time to cry. So I did. I was so happy and tired and overwhelmed and...probably a million other things. It was brief and hot and salty and my cat made a beeping sound just once - I picked her up, she fought it like an asshole, and I walked to my bedroom and fell asleep before my head hit the pillow.

Thank you team. Thank you donors. Thank you Heidi Thompson and the LRF. Thank you mom, thank you dad. Thank you friends for being my friends. Thank you family. Thank you, Brendan.

Here we go...

This is about to be a big weekend.
After a trip to the dentist, Brendan learned that he has to get his wisdom teeth pulled before he starts treatment. So tomorrow morning, Brendan will get to endure the FUN we all know that is getting your wisdom teeth removed.
The day after that, he starts treatment. The beginning of his 12 weeks of chemo.
I don't know about you - but the only thing I did after I got my wisdom teeth pulled was lay on a couch with blood soaked cotton in my mouth and cry while my mother tried to feed me baby food. Which is obviously the most glamorous, classy, mature, and strong way to handle the situation.
If I have yet to convince you of Brendan's might - he is facing the idea of blood soaked cotton mouth while getting poisoned in stride.

I take the MCAT (again) on the 20th - which, once I get it over with, will be a relief. Not only for freedom sake, but now I will be available just in case my brother isn't feeling like a super hero on some days.
The 22nd is the Lymphomathon, and within the past week there has been a mighty surge in team members, donations, and all around support. As of today we have raised $2,665 and have over 30 people who will be walking (or strolling).

Last night I tried to buy purple nail polish, and instead it has come out iridescent. It wasn't until after that I looked at the name of it: Grape Going!
As if it knew.
Hodgkin's purple is not iridescent, FYI.
If you're looking to crash the Lymphomathon, we will be the rowdies wearing lime green. If you need any more incentive, there will also be snacks, face painting, and the Jesse White Tumblers.
(RIGHT!?!) Party crashers welcome.

All the Lymphomathon shirts are happening because of the one and only Kyle Gibson (seen here in his normal, everyday apparel) . He will be at the walk with us this weekend, and we will all be walking a little harder to support his family, who have also very recently waged a war against a mighty mean cancer. So send some of your positive vibes and thoughts his way if you have some to spare.

Walking 'phoma Brother - again!

First off, I want to again give my thanks and gratitude to team Walking 'phoma Brother - we are 31 walkers strong heading in to the 5k and the team has raised a whopping $1,845 in only 3 weeks. It's just downright amazing and...I don't know folks...just, thank you. Thank you so much.

In other, futuristic news:
September is blood cancer awareness month, and I will be taking team Walking 'phoma Brother a-walking in Light the Night. Just like the Lymphomathon, anyone and everyone is encouraged to join up (and again, no donation required to walk), so that we have a beautiful militia of beautiful people at Grant Park standing strong in support of everyone fighting the good fight against blood cancers.

Sign up for the team here.

Don't worry I won't ask you to run with me (and Team LRF) in the marathon in October.

Hope begins in the dark

Heidi Thompson, of the Chicago chapter of the LRF is amazing.
About a week ago she had sent me an email, congratulating the Lymphomathon team for doing so well, and for having a brilliant team name (RIGHT?!), and also asked to hear our story.
When I told her the jist, she responded quickly not only with supportive words but with a handful of resources should we ever need them.
Then, two nights ago, I checked my mail to find a massive envelope from Heidi.
Inside was a letter letting me know that any help I could find through the LRF was at my disposal. She sent 4 pamphlets of information about terminology, facts, patient and family resources. She sent Hope Begins In The Dark by Jamie Reno, which is a book composed of 50 Lymphoma survivor stories, and a small book titled Understanding Hodgkin Lymphoma.
The nicest.

Last night I was presented with our version of Hodgkin support bracelets. Heather's sister (I think it was her sister...my memory is only the worst ever) has made a handful of wonderful and amazing woven bracelets in colors violet (for Hodgkins), lime green (for Lymphoma) and black (for awesome). I'll wear it until it rots off my wrist - at which point I will ask for another.

This week has been rough. Really really rough. The hardest so far.
All the tests and procedures and doctor visits has taken it's toll on Brendan, and he is visibly frustrated. We took a jaunt to the ER last night after Brendan started feeling (and looking) awful.
When the triage nurse asked Brendan if he had any health issues, Brendan glanced to Heather and I before looking back to the nurse and saying "I have Hodgkin Lymphoma". His jaw tightened. My eyes stung. I'd never heard him say it before. I wonder if he'd ever said it out loud.
The negligent and apathetic ER staff that night was the last thing Brendan needed. The added stress is something he shouldn't have to deal with. That ER received a very angry phone call this morning from a violently over-protective sister.

It is getting increasingly hard to find any truth in all the times we were told this was the "good cancer". There's nothing good about this.
Mamas, don't let your babies grow up to get cancer.

The Lymphomathon is right around the corner, and the team has SMASHED the team goal of raising $1,000 by raising $1,710!
How great is that?! The actual team is about 26 members strong headed to Montrose Harbor on August 22nd.

We could always use a larger army.

Carefully Optimistic

I have no idea how I've beaten the family to the 12:15 appointment with Dr. Rose, but it's 12:15 now and Dad is the only one sauntering off the elevator towards me.
The air in Dr. Rose's office is considerably lighter than the last time we all filled it. We talk too loudly and inappropriately for being in public before we are ushered in to a small room harboring an eclectic group of chairs. Over an hour goes by before Dr. Rose and his elephant tie finally appear in an impatient room.
Stage IIa. Non-bulky. Favorable.
It isn't in his bone marrow.
Mom, Brendan, and I exhale in unison.
Dr. Rose lays an outline for treatment and answers questions my parents ask. Again, I have no contribution and I get frustrated - my headache rattles. I remember that this is why I always wanted my parents around for adventures such as these - they seem to know what to ask. I assumed it would come with adulthood, and maybe that is true - I'm wrong about being an adult.
After one more jaunt to the sperm bank (an investment that is rather pricey, by the way) and on August 19th, Brendan will start chemo therapy. Stanford V. He will have to go once a week for 12 weeks. After that, he does 3 weeks of radiation treatment - Monday through Friday, 20 minutes a day.
The treatment, Dr. Rose explained, is like the sun melting the snow in a parking lot. The chemo will melt the vast majority of the surface area, but the radiation is to conquer the mountains of snow that the plows have built.
12 weeks of warm days.
3 weeks of direct sunlight.
That should - hopefully - take care of it. Dr. Rose is "carefully optimistic" that the treatment should take care of it.
No one asked what the side effects would be. It was the only question I could think of, and the only question I didn't want to hear the answer to. In the midst of all his rambling I caught Dr. Rose saying that this 12 week treatment once a week makes the side effects worse. That with the alternating schedule of drug types per week, as soon as you recover from the side effects of the first, the side effects of the second come on strong. That a long term consequence of the poisonous treatment can be leukemia - but it's worth the risk.
I'm nervous. I want to get better at this. I'm nervous. And anxious and my head hurts and I feel helpless and nervous. I'm worried - and I don't want to let that on. If I am this scared, how must Brendan be feeling?
We have no choice but to try and be optimistic.
We have no choice other than to lower our shoulders and charge.
For now, the future is in the toxic little hands of the treatment drugs, and the resilience of this disease. All we can do, all I can do I suppose, is stand next to my brother - my little brother - my fucking hero - and straighten his chainmail.

I learned that after I had left, the nurse had come in and warned Brendan of the side effects.
I'm considering losing all of my hair when he loses his.

#14

The little red fish with the worried face is nowhere to be found. Everyone else is accounted for - and even seem more at ease that last time we shared this space. The waiting room is louder this time. A gang of children are screaming at the fish tank, a pack of women are boisterously speaking some language that I don't understand...although it could be english...and a worried woman is sitting alone making constant phone calls. The bumble bee lady is dressed like a spearmint candy cane today - she is yelling far less than she was last week. She remembered me.
Brendan seems far less nervous about this trip in to surgery, and we get a solid half an hour of hanging out and joking until the anesthesiologist - Dr. Martini - injects him with her drug. Brendan quickly goes from normal to glazed over and starts giggling - my laughing makes his worse and they wheel him away with a silly grin all over his face.
The time goes by fast with your nose in an MCAT study book - but when Dr. Buffa (Brendan's surgeon for today) finally came over to talk to me I realized it had been an hour. A longer time than they quoted me as they wheeled him in. He was brief, and told me Brendan was to see him in one week to make sure all was progressing well with this port.
A few minutes later, the bee-turned-candy-cane tells me Brendan is behind curtain #14 - and to go ahead and find him.
I gleefully sauntered toward #14, focused on searching for the curtain number rather than the reality of what would be waiting for me once I got there. I have no illusions that watching my little brother - one of my best friends, my oldest friend - endure cancer wouldn't be hard. I guess I just thought it would get hard once he started treatment - not before.
Naive.
Sitting in a pale, tattered recliner in #14 was a pale, tattered Brendan. I'm sure he saw my smile vanish as I walked closer, and I'm assuming I did a horrible job emitting positivity. His eyes were heavy, his mouth closed in a tight-lipped partial frown, and when our eyes met he winced and sucked in air through clenched teeth. I tried to recover by complimenting the walls his "room" now had (upgrade from just curtains) but he didn't crack a smile. I asked him if it hurt and he didn't respond - just pulled down his smock revealing a new lump in his chest covered in gauze - the port. I winced and made the same air sucking through clenched teeth noise. He slowly asked me to describe how it looked because he couldn't see it - so I took a picture of it with my phone and showed it to him. He mumbled to take a picture of him in the whole get-up, and I took one that he managed a smirk for. I don't know if he knew I took two - but the second one is honest. You can see every ounce of pain.
It's goddamn heart breaking.
Fucking heartbreaking.
We sat in that room for awhile - both of us talking only a little - before an unhelpful nurse finally came around to release him. She mentioned to see Dr. Buffa in a week and I was horrified to realize I had forgotten all about that instruction in the midst of this distraction. So maybe the nurse was more helpful than I initially gave her credit for. Brendan slowly dressed after his IV was removed and I dropped him off at home so that he could pack a bag for Heather's, eat some food, and take some vicodin while I got us some coffee.
By the time I got back, Brendan had devoured his food and had made me a sandwich - he already seemed to be feeling better. Two vicodin and 20 minutes later, Brendan was back to normal - talking and joking while we sat in traffic on the way to Villa Park. I dropped him off at Heather's and promised to join him the next afternoon at Dr. Rose's office when we get the remainder of the test results back.

I listened to nothing memorable on my solo car ride.
A few tears jingled down from frustrated eyes once or twice.
I hadn't been ready for today and I felt guilty about it. I felt useless, and helpless, and irresponsible. I hate that I forgot Dr. Buffa telling me Brendan had to make an appointment in a week. I hate that I have no list of intelligent questions for these doctors about my brother, and I hate - most of all - that it's only going to get harder for Brendan from here on out.
I'm assuming we can only get better though. We will all learn the best way to fight these battles. I am thankful every day for my brother, and that he still lets me accompany him through this even though I'm not the best at it. Yet.

A pelvic toothache?

I was in the air, in an aisle seat to Denver, when Brendan got the results back from his big biopsy and was instructed to head towards Dr. Rose's office. When I landed, I called Brendan for an update on everything we now know: I don't know how poetic I can be with all the information we just got presented with, so please indulge the rugged compilation of information I am about to lay down.

After the PET scan and biopsy results, the Lymphoma has been deemed Stage II, which is involvement of two or more lymph node regions on the same side of the diaphragm, and thus far it's location is isolated to Brendan's neck and mediastinum surrounding his sternum on either side. It is wonderful news that nothing has spread below diaphragm. Thus far, there are no organs being devoured by the cancer, but just to be sure it is only in his neck and chest, Dr. Rose performed a bone marrow biopsy on Brendan to ensure it wasn't running around in his bones as well.
Brendan said the bone marrow biopsy is not something anyone should want done (well, there go my vacation plans...) but that while it did not hurt, it felt like "a toothache in your pelvis" - and the discomfort is extreme. Brendan said the Novocaine shot hurt more, but that the "screwdriver, or ice-pick, or whatever massive thing he shoved in my pelvis" wasn't a picnic either. He had to have it done twice...just to be sure.

The biopsy results also allowed for typing and we are waging war against subtype Nodular sclerosis (or "NSHL") - which is "good" (sigh) to treat according to Dr. Rose. Wikipedia claims that it "is the most common subtype and is composed of large tumor nodules showing scattered lacunar classical Reed-Sternberg cells set in a background of reactive lymphocytes, eosinophils and plasma cells with varying degress of collagen fibrosis/sclerosis."
And apparently, they are no match for radiation and a little chemotherapy...(?) Theoretically, we are told that it is easy to treat because it does not spread like wildfire...just in Brendan's case, to the lymphatic left and right of his sternum.
Now, Brendan has a new laundry list of things he needs to get done between now and when his bone marrow biopsy results come back. He needs to take a trip to a sperm bank - because although the doctor says he has never actually had a case where his patient becomes infertile, it's better to be safe than be shooting blanks. He has to have another, more recent chest xray, to help map out the location of the tumors and to give more information to find further staging. (II/IIa, bulky/non-bulky, favorable/unfavorable...). Dr. Rose is currently assuming the results will reveal II, (the "better" stage II to have...) because Brendan has not shown any symptoms of stage IIa.

The most interesting part of this to do list is the port catheter that he will have installed in his chest. It will only be about the size of a dime, but it will be what truly limits his activity while he is undergoing treatment. The catheter will be snaked in through his veins, and as it is a segmented tube, if Brendan does any repetitive motion, the catheter can splinter in to pieces all around his chest cavity. Therefore, there will be no weight-lifting, no swimming, no kayaking, nothing that involves a repetitive motion with his upper body. The port will come out when treatment is done (estimated 4 months) but no repeated movement of his chest muscles until then.
Dr. Agos, of previous surgery fame, will do the port. Before treatment, Brendan will also need to go through a MUGA scan to test his heart and its muscular strength before they pump poison in to his body in attempts to kill the cancer.
If all these tests give us information that coincides with how Dr. Rose thinks Brendan is progressing (and the cancer is not in his bone marrow), he will only have to endure low chemotherapy with radiation. Dr. Rose gave Brendan a tour of the treatment facilities at Resurrection, and as far as Brendan can tell - it may not be all that bad. Lazy boy recliners, Dances With Wolves aka the greatest Kostner film EVER on VHS (iloveyou Two Socks), and a little dose of medication to ease the side effects will make it so that Brendan will even be able to take himself to and from treatment.
Thursday is the tentative day for the next phase of information burst, and at that point, we can start making treatment arrangements, and attack this thing from all angles.

In other news, the Lymphomathon team has exceeded and surpassed my expectations. We have already raised $910, and have 12 members. I will continue to thank thank thank these generous people each time I get the chance, because it is impossible for me to actually express in one round of thank-yous how much I appreciate them.

We are doing okay. The influx of "good" news is helpful, and as always, we each have a full plate of life to take care of in order to distract ourselves from the demons. Brendan and I are in the weeds with medical school applications, and mom and dad are work-work-working. Brendan's fiance, Heather, is in town for one more week, and once Brendan starts treatment the fight will truly begin.

"Determination is helping me fight this lymphoma, and will continue to help me keep my course of treatment until I have beaten my disease."
The above is an excerpt from Brendan's personal statement for medical school. Reading it might have made me cry a little.
...he's my hero.

In one week, we have raised $810 dollars for the Lymphomathon. I won't ever be able to express enough gratitude to the people who are contributing, and especially those who have signed up to walk alongside us in August. There are infinite spots available and plenty of time to sign up and join - no donation required, just the desire to saunter in the Sunday sunshine.

The art at Swedish Covenant Hospital is chosen more carefully than at Resurrection. Artist statements accompany each painting - eliminating the subjective nature of the art itself. It reminds me how selfish art actually is.
The receptionist here speaks a loud, battered, and incomplete English - her voice carries for floors and echoes through the hospital. She's wearing yellow stripes like a bumblebee. She butchers our last name when she calls Brendan to get prepped, hollering across the room that I need to stay here, that I need to let Brendan out of my sight, until they call for family. Now I hate her. The chairs aren't very giving. The hospital is unreasonably loud. There is a lot of natural light. The artist wants me to remember we are all elements in nature.

It's Monday. Two weeks since Brendan was diagnosed with Hodgkin's. The PET scan was 5 days ago and a 3 hour tour (a 3 hour tour). Today, Dr. Agos is cutting in to Brendan's neck to remove as much tissue as he can grab without performing major surgery on the arteries, veins, and nerve bundles surrounding the cancer. One fourth of me wants to ask if I can watch. The rest is logical about how impossible that actually is - and on top of it, scared to actually see the devil. This cancer is an invisible threat - just a bump we can feel, an itch Brendan can't ever satisfy. Sometimes I forget that his blood is littered with invaders. Sometimes I forget to be afraid of it. The new silence of the waiting area makes me aware of where I am, and I have no idea how long it has been since Brendan walked off. It feels like an hour. Patience is not a quality I boast.
Finally, I hear "family of Klein!" screech through the 2nd floor waiting area and I follow instructions and a nurse toward outpatient curtain number 20.
Brendan is there, with a poofy blue hair net and footies. There is an IV stuck in his arm and an air of nervous anticipation. I don't know how he does this - he is rapidly evolving in to a hero. We talk and joke, a nurse comes over, the anesthesiologist stops by to make sure Brendan's lungs are good, and finally Dr. Agos appears. He is a big, friendly, fellow who firmly shakes both of our hands, and writes the word OKAY on Brendan's chest to make sure he cuts the correct side. I tell Brendan to be cooperative, and the anesthesiologist jokes that he always wins anyway, as he injects Brendan with his magical drug. They wheel him off. It's hard to watch him go. Hard. Hard to walk back to the waiting room.
There is a large fish tank in the waiting area - I am surprised to see a puffer fish and a tiger fish in an hospital aquarium. Watching them is hypnotic, and when I slowly press my hand to the glass near the tiger fish's striped face, he is mostly apathetic. We, the nervous families, the anxious loved ones - we wait.
A little over an hour later, Dr. Agos appears. He tells me everything went well, and that he "removed all of it". The IT is already en route to the lab, and we will know the type of Hodgkin's we are facing within a week.
It's being sent to a lab.
A significant piece of this curse is out of Brendan's neck.
It is out.
I thank him and he walks off.
The puffer fish is doing hasty laps, the tiger fish lazily floats, long fins spread wide. There is a tiny red fish with a worried face swimming frantically. The anxious boyfriend across from me starts dialing his phone, a heavy man is snoring in a chair close to mine, a man gets an undate half-way through an open heart surgery, and those asshole lymph nodes are out of my brother's neck.
They're out.

Walking 'phoma Brother

I've finally started a team for the Lymphomathon, after Brendan vowed to walk with me (if he's able). So please please please JOIN OUR TEAM!
Just click on the "my team page" link, and become a recruit.
If you live in Chicago, or just might be around August 22nd, please join the team! Having a million people out there to support my Brother (who will be in treatment by then) realistically means more than any amount of money. No donation required to join, just the willingness to strut your stuff!

We also have a Facebook page.

Lymphomathon

I'll be participating in this year's Lymphomathon in order to support my brother, and all the other folks being inhabited by The Hodge.
If anyone else out there wants to join the bandwagon, it would be pretty awesome to get a great team together for this 5K jaunt at Montrose Harbor.

Incentives may include: making funny shirts to wear while we walk (and to wear forever), health benefits of walking 5K, excellent karma, resume boosts (?), my eternal love and respect and gratitude, contributing to cure cancer, supporting a fellow who is pretty much one of the coolest people we all know while he fights the good fight to stay awesome.

Also: team name suggestions welcome.

The insurance company is taking their sweet time approving all the tests Brendan needs done. Meanwhile, on the phone today, Brendan told me about an online-store he found.

We might go to town here...

thehodgeshop.com not only has a great name, but the "original designs [are] created by Hodgkin's survivors." And, they donate a portion of the proceeds to benefit Hodgkin's Lymphoma Research.
The site was founded by a family who watched their sister go through was what is deemed the "good" cancer.

While it is comforting to read and hear about survival stories, it's hard to read about someone being told theirs is the "good" cancer (which is what we were told) and then they end up fighting an awful, and painfully long battle.

But if anyone can do this - my brother can.

Room 400

7.14.10

My little brother has cancer.

I poured too much sugar in to this styrofoam flavored coffee that the oncologist's waiting room has provided. The room is surprisingly small. Small and light blue with extremely inoffensive art(?) on the walls. The click-clock of the door knob turning is like a siren, and when it click-clocks we all turn our heads to see what or who is emerging. The nurse comes through the door and and says "Brendan?" and we look at him with the most supportive eyes we can muster. With a whispering whistle, Brendan signals to his fiance, Heather, to follow. Mom and I are left alone with the art and magazines.
Dad arrives at 2:15 for a 2:00 appointment and is irritated that we are being kept in the waiting room away from the informative doctor. Mom is equally frustrated that she wasn't chosen to accompany her son, and has resorted to breathing loud and extensively to display her discontent. I'm trying to keep them reasonable - my words are far more calm than I actually am at this point.
The room is cold. I've flipped through magazines and didn't take notice of anything within the covers.
The cancer is consuming my brother, but it has also consumed my mind. It's consuming the family. We wait in silence.
I'm worried about Brendan, because of the cancer, of course, but moreso now because I can see how scared he is. Today, sitting here in this office, I can see how scared he is.
There is nothing I can do to help him.

An hour later, the same nurse pops her head back in the room and lets us know we can join Brendan. The doctor isn't back yet, and Dad nervously asks if he is coming back to talk to all of us. When he finally comes back in he is a tall, white haired man with hippos on his tie, who only occasionally looks directly at any one of us while he explains the situation. The jist, is that Brendan caught it early - he's probably been harboring the cancer cells for only 2 years (....ONLY?!), and that he is young, and that Hodgkin's Lymphoma is the lesser of the cancer evils. Dad hurriedly inquires about treatments and time lines, and we are all told that until further tests, which will include removal of one of his infected nodes, and a PET scan, are done we can't know the extent of what it will take it wage this war. Mom bends down behind Brendan and rests her hands on his head, sliding them down to his shoulders and pressing her face in to his hair. When she stands up straight again she breathes out the breath we have all been holding for the past two days. She manages a smile, I catch Brendan's gaze. He looks at me with wide eyes that seem to probe mine for hope.
Without anymore questions for the doctor, we file out of his office, and in to the narrow hallway. The air is sprinkled with optimism as we pile in to the elevator and onward to face the heat of the July summer.

July 12th 2010:

My little brother has cancer.

I am hoping the more I write it, the more I hear myself say those words, that we will have already defeated it. I want nothing more than to steal the cancer away, let it course through my blood instead.




My little brother. He shouldn’t have to deal with this. He shouldn't have to be scared.

I spent too much time on the internet looking at lymphoma wrist bands, pins, volunteer opportunities, marathons and walks - as if getting passionate about this cause will make it leave my brother alone.
My little brother.

I'm being selfish, putting this here. It's mostly a way for me to deal with the day-to-day, to tell without telling. Maybe somehow this self-serving little blog will help another sister experience the journey - or it can just stay on the internet forever and remind me to tell my family how much I love them.