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.