Where Did All My White Blood Cells Go???

Friday came, and I was ready for my chemo treatment. My parents were in town, I'd planned my "first meal after chemo" (thanks Matthew!), and was mentally prepped to get it over with and move on. Then the tires on this truck came to a screeching halt.

"You're not getting chemo today"

I can't say it was completely unexpected, but I certainly had a good idea why. My Aunt Anne is currently fighting colon cancer, and after her first chemo treatment, her white blood cells didn't bounce back enough for round two. She took a medicine designed to promote white blood cell activity and actually had fewer white blood cells the next time! A second medicine proved to work, and she's been able to continue on with treatment.

I'm not sure if it's our fantastic Portuguese genetics (I will not hear any comments contrary about the Portuguese genealogy), but I had the exact same problem. I got a shot of medicine, and we're going to try again on Monday.

I have to say, the most annoying part about the delay is how it's messing up my scheduling. I had planned nothing for the weekend, knowing that I was going to be miserable. Now my Mon-Weds is messed up and I have nothing to do this weekend! Plus, it potentially pushes back other treatments, whether by changing the day of the week that I go, or which week is an on week/off week. Guess there's nothing certain with chemotherapy.

Early Hair Photo Entries From Jackie

My family friend Jackie Desjardines submitted these photos from the past few years.

May 2005 - I'd just graduated from college. I swear, long hair was fashionable at the time. I looked at photos of all my roommates when we graduated, and we all had long hair. Maybe we were just lazy?

By Dec 2006, I had adopted the faux-hawk, even though I distinctly remember making fun of it in college.

By this Christmas, I was much more asymmetrical and wispy

It's also good to know that I've successfully worn bandannas before (though this was a pirate party). I'm sure I'll be rocking them a lot in the next few months!

Thanks Jackie!

CONTEST: Favorite Ryan Hairstyle

Those who have known me for many years know that my hairstyles change frequently. I look back and love some of them! And then... well, there are others.

Since there's a 95% chance that I will lose my hair sometime in the next week, I could use a morale boost. That's why I wanted to start a photo contest. So dig out those old photo albums and find your favorite Ryan hairstyle. Send me the picture at RyanFarias@gmail.com so I can post it on the blog here.

This cut (circa 2003) was certainly one of my most memorable, though I have weird bangs going on in the first photo of it. Oh what too much Asian influence can do to a person.

So send in your favorites, and I'll supplement with some of mine that I've found too. Bonus points for those who can dig back to 1997 shoulder length hair phase.

Let's think of this as celebrating a new phase of my hair by conducting a museum worthy retrospect.

Oh, My Family!

My family has been fantastic and supportive, even as I'm sure this is all daunting and difficult for them too. My parents have come up twice now to help me out, and I really couldn't get through this without them. That being said, we've had some pretty funny times coexisting in my tiny NYC apartment. A few favorite moments thus far:

1) My dad came up on Tuesday night in time for my port implant surgery on Wednesday. We now refer to the 48 hours between his arrival and my mom's arrival on Thursday night as "the bachelor life". This is a time for cutting corners, not picking up after yourself, and doing whatever we want. It was a good run of doing things "our way". Though I'm pretty sure with my surgery and my dad's cooking skills, we never would have survived without my friend Matthew coming over to make us dinner!

2) My mother made pancakes the morning after my first treatment. She complained that I didn't have a griddle (her usual method for making pancakes) and that my kitchen was too small for the task. There's about a 3 inch strip of counter space between my stove and the sink, and that's about all the counter space the apartment came with! My mother didn't want to balance the bowl of batter on that, so she announced that she was putting it in the sink itself. My father, wanting to get himself juice AND be eco-friendly, decided he would rinse out his Dunkin Donuts coffee cup for reuse. He assumed that anything in the sink was dirty and took to rinsing out his cup with no real concern for where the water splashed. About 2 minutes later, my mother was ready for the next batch of pancakes and found a surprising amount of water in the batter bowl. I believe her exact words, which she repeated frequently in a high pitch yell, were "Are you an idiot?!" I laughed so hard for about 3 minutes straight that I needed to take a nap immediately after breakfast!

3) Heating up leftovers for me on Sunday after my first treatment, my mother put the aluminum container with the cover (one side white, one side metalic) into the microwave. Seeing this from the couch, I tried to stop her, but she assured me that she puts these types of containers in her microwave at home all the time and that it was fine. About 10 seconds later, she spotted the fire she'd started in my microwave and ran over to press stop. The cover and the container itself had caught fire, and the whole apartment was filled with that fun smoky smell. She then blamed my microwave!!! Oh, and the left overs tasted smoky and were completely ruined. (L'Heureux Family - it reminded me of the time when I was a kid and we went skiing and the spaghetti sauce got burned, so you lied and told me it was hickory flavored... and I believed you! Well not this time!)

In addition to my parents, Derek, Beth, and Luke (my brother, sister-in-law, and nephew) have been great support. They sent me a care package with a netflix subscription, organic snacks, and Gatorade Fierce (taping a note on the bottle to remind me that I too am Fierce) . But the best thing was a bag of Starburst with a note taped on it that said "Warm Apartment + Starbursts = Grandma's House". My apartment is always 90 degrees, so yes, he managed to bring a happy childhood memory back to me with one bag of candy! All I'm missing now is the Kool-Aid!

They also sent me the best picture EVER. I've put this on my refrigerator and l look at it all the time. THANKS GUYS!

I Hate Limitations

The first week of life on chemotherapy was full of ups and downs. My spirits were somewhat refreshed to see how much better I was feeling and how much more energy I had as the week progressed. At the same time, returning to the office and other events of the week forced me realize that I do have limitations that I must face over the next few months. I hate limitations.

My week started out somewhat comical though slightly annoying. On Monday, I went for a heart scan out in Elmhurst (which is a pain to get to). I was told to not eat or drink anything after midnight the night before, which for someone who needs to stay hydrated due to special kidney medicine, is not easy! I felt pretty miserable (and very dehydrated), so asked the doctor when I got there if I could at least have a little water. She told me "Oh, you can eat or drink anything you want to. Did the receptionist who called you tell you not to have anything? Oh, I keep telling her it's only the heart stress test that you can't eat or drink for. Sorry!" I would have punched the receptionist on my way back to the waiting room, but I was too tired/weak to do it... and was too overjoyed that I could run to the Dunkin Donuts across the street and feast!

After my feast (during which time the blood cell tracers they'd injected me with time had time to settle), I returned to the office to be injected with radioactive elements and then get scanned. After 20 minutes on the table, the doctor came over and started moving me around and hitting the injection area (OW!). After a few minutes she said, "I can't find your heart!" I'm pretty sure I have several exes who would testify that there isn't one in there. I'm also pretty sure that I, with no medical training, could find my heart using this million dollar machine. I even pointed to where it was on my body to help her. "SCAN HERE". Unfortunately, it seems I'd gotten a "compromised" dose of the radioative elements and would have to come back tomorrow to try it again. And yes, the next day, after eating breakfast (SCORE!), I returned and they were able to find my heart. She even printed me out a picture to prove it. I'm thinking of framing it and putting it on the wall as proof for future relationships.

Though I'd done some work from home on Monday and Tuesday (and throughout my weeks of medical fun), Wednesday marked my first day back in the office. Though I excitedly left my apartment that morning, I was soon slapped in the face by reality when the commute into the city proved to kick my ass. Carrying my lap top in one hand and a bag full of stuff that I needed in the other, I was in pain and exhausted by the time I reached Grand Central. I walked somewhat like a zombie to my office and collapsed into my desk chair. After a short rest, I was ready to tackle the day... which somehow turned into a 10 hour ordeal! WELCOME BACK! If I thought I was exhausted getting there, all I had to do was wait until it was time to leave to discover true exhaustion!

After discussing my day with my friend Heather, she got me to realize that I'm an "A Student". I push and push and push, go the extra mile, stay late, do the extra credit work even if I don't need to, and am not satisfied with anything except my absolute best. I need to smack that "A Student" down for a few months and learn to live by the limits I set for myself. It's not a matter of "I can't stay late to finish that project" but rather "I choose not to stay late to finish that project." I'm currently working the terms of all this out with my employer and hope that I can train myself to live by what we decide!

The other major realization of limits this week came also on Wednesday night. My friend Chris called at around 6 that evening to invite me with him to a surprise show that night. He wouldn't tell me what it was until he was sure he'd secured the tickets. He called back to say that he'd gotten (for free) 3rd row orchestra seats for the Lady Gaga concert at Radio City Music Hall that night! He was so excited... I was so excited... and then reality set in. I was exhausted after working a 10 hour day. I wasn't supposed to be in large crowds, especially those screaming (spitting), sweating, coughing, etc. And I had been having bad headaches from light and sound sensitivity, so a rock concert was probably not a smart idea. It KILLED me inside, but I told him to find someone else to go with. I know I made the right decision, but that doesn't make it any easier to do or think about later. There was definitely some angry crying that night at home. But hurdle crossed, lesson learned. Plus, I made Chris text me the next day and say that the concert sucked. It might be a lie, but I'm ok with that!

Despite these glaring reminders of my limitations, I was encouraged this week by being grateful for and enjoying the things that I can do. The rest of my work week was much more comfortable as I controlled my time and work load better. I had friends come over for dinner a couple of nights this week, and was happy to have the energy to eat, chat, and watch TV with them like normal. Friday night I had a great dinner with some NYU friends, and except for the fact that I wasn't drinking margaritas with them, it felt like a completely normal evening out. Earlier today I grabbed brunch with some friends in town from Rhode Island, and feel that I have plenty of energy to go out tonight and sing karaoke at my friend Mike's birthday party. These are things I certainly couldn't have done during the weeks of medical madness, and it's good to know that I'll feel up for these types of activities 75% of the days each coming month. So there's no Lady Gaga or drunken nights dancing (oh, I do love both those things)... but it could (and has been) a lot worse.

Chemo Makes Cancer Feel Like Cancer

So the big day finally arrived. I was super focused on getting treatment started so that I could feel like I was on the road to healing. (Also given the size of my tumor and the pressure it put upon some major blood vessels and my airway, I wanted this done ASAP). Unfortunately, it seems that I really failed to grasp just exactly what "treatment" would mean and how long the road to recovery would actually "feel".

Friday I went to my oncologist office, and after some blood work and testing for allergies, I got my first treatment. From talking to other people, I thought the treatment consisted of sitting in a big leather recliner for a while and watching TV while the medicine dripped into me through an IV. Though I'm disappointed to have missed the second half of The Price Is Right, getting the injections over in 5 minutes beats hanging around in the chair for a while. Basically, my doctor puts a needle/IV in my port (which yes, I can see now, and is totally creeping me out... pictures to come when I can stomach it!). I didn't feel a thing, which is pretty awesome, especially since that whole area is still tender from surgery. The doctor then injects the 4 different chemo meds through that IV. We were happily chatting to pass the few minutes, until all of a sudden one of them hit me like a brick wall and I was horribly nauseous. We slowed down the injection speed and things subsided a bit. He told me I'd really feel it in the next 2-3 hours and to just rest and drink fluids.

I had some soup for lunch, which was an AWFUL idea. The very thought of that soup, or any soup, makes me nauseous, even as I'm writing this. I think it's now mentally associated with the wave of nausea and overall sickness that came shortly after eating it. My friend Jayde (who works in cancer pharmacy) later told me that she always advises patients to eat something they don't really like right after injections, that way it doesn't ruin a food you loved. Not that I LOVED soup, but I will miss eating it for the next few months as I try to disassociate it from chemo nausea.

As predicted, about 2 hours after the treatment I felt about as sick as I've ever felt in my life. Chemo feels like the worst hang over you've ever had, except you don't have those "last night was awesome" memories to make you smile. It also feels like the worst hang over you've ever had while also having the flu. I slept a decent amount, but was almost afraid of sleeping too much and being awake (and miserable) all night. Oh no, I still slept a good 10-11 hours at night too, so I've learned to just sleep as much as I want... no repercussions.

In addition to the awful nausea, chemo also gives me body aches, extreme fatigue, and headaches. I become SUPER sensitive to light and sound, to the poiint that I spent a few hours both Friday night and Saturday just sitting in a chair in the dark in my room. Any sound (from the TV, my parents talking in the next room, etc) or any light (even the light peeking through the door cracks) gave me an intense migraine! I wound up doing a suduko puzzle by the narrow light of the door, and have discovered that it's a good barometer for my recovery. Friday night, it took me FOREVER to the do the first easy puzzle in the book. However, though I was still sensitive to light and sound on Saturday Saturday, it took me much less time to complete the puzzle. As odd as it sounds, it really made me realize the progress in recovery that I was actually making. Thanks suduko! (and Derek and Beth for sending me the book in a care package!)

Saturday I had to go for a lung function test. Given my nausea, fatigue, etc., I clearly was not in the mood for this. I informed the super energetic nurse giving the test that I'd had chemo the previous day and felt like crap. She still made me blow super hard into the tube and hold my breath for long periods of time. At the end of the exam, I was about ready to pass out, and she felt awful! I had to lay on an exam table in an empty room for a while to recover! Then, of course, came home and napped the rest of the day!

By Sunday, I was feeling somewhat better and not having as successful of naps during the day. My energy had come back and I was able to actually watch TV without getting a massive headache. I'd say that on a scale of 1-10, Friday was a 2, Saturday was a 4, and Sunday was a 6. I only rank Friday as a 2 because I have a feeling the next treatment or two will actually be worse, so I wanted to save the 1 for the really bad stuff! Sunday was also an odd day, as I could begin to feel the lymphnodes actually breaking down in my neck. I had a tough time sleeping that night, as my neck was spasming and readjusting itself to the new "space" being created. Totally creepy! But it does mean reduced swelling and one step closer to being able to breath like normal again!

To be honest, chemo knocked me off my horse and flat onto my ass. I think I had spent so much time focusing on starting the treatment, and not enough actually mentally prepping myself for how sick it would make me. It really brought my positive attitude down a lot, but it's slowly building back up (in time for the next treatment!). The thought of going through this every 2 weeks scares me and makes me wonder how the hell I can continue to endure it. I'm almost traumatized from round one and have between 7 and11 more doses to go. This is going to be a lot harder and take a lot longer that I'd anticipated!

At the moment, the items in the "next time will be better" column include:

1) I won't have just had 2 surgeries that also hurt (but honestly, the chemo hurt so much, I barely noticed that other things hurt!)

2) My lymphnodes and tumor will have shrunk enough that I can sleep flat again instead of having to sit upright. The thought of curling up while laying down is like a dream to me!

3) I won't be afraid to just sleep it all off, rather than thinking that I'd be awake all night.

4) I'll know that it'll pass in a few days and I'll feel better soon.

Items in the "next time will be worse" column include:

1) After the injection, I'll have a new, higher level of chemo in my body (remnants of the old, plus the new). This should make things even worse!

2) Knowing what's coming makes it's harder to deal with than being naive

3) Resigning myself to the idea that I will get horribly sick for 2-3 days every 2 weeks for the next couple of months is a hard, bitter pill that I've been trying to swallow.

As much as going through scans, tests, surgeries, and insurance BS sucked, this is the moment where I'm really needing the spirit boost. I know I have to stay positive and upbeat, but having faced the storm once and knowing this boat has to navigate it numerous more times is super challenging right now. But I intend to use the blog and continue having fun with it as much as I can! Thinking up some contests and challenges to keep this fun for all and make me smile. More on that soon...

Surgery: The Sequel

Wednesday morning I went for surgery to have a port installed in my right side upper chest. It was a familiar trip back to Mt Sinai Manhattan, and I even wound up in the same operating room and recovery room as my last visit. I think I freaked some of the nurses out by remembering their names and saying hello!

I only had local anesthesia and was awake for most of the procedure; however, I couldn't really feel much. All I felt was pressure on the area being worked on. I had a blue sheet over my face so that I couldn't see anything either. With the drugs, I didn't so much care about seeing anything or wondering what was behind all that pressure. I just kind of laid there drifting in and out of sleep. I did, however, feel the last few sutures as they went in. I started to moan out "ow" and the doctor told me he was just suturing me up and almost done. Most people would freak out... I was so drugged that I was just like "oh, cool. ok! take your time"

Recovery at the hospital was a lot easier than the previous time. I was quickly awake and full of energy and got frustrated that they made me wait before I could have my apple juice and crackers (I hadn't eaten all day and it was 12pm by now!). As I sat waiting in recovery, I couldn't help but think how lucky I was compared to the people around me. The person on my left had recently had his appendix out, but the pain had continued. It turned out that he actually had stomach cancer. The guy on the right of me was 84, but in amazing condition. He had a tumor on his bladder and after several extensive procedures, he was up beat and telling dirty jokes to the doctors. I really felt inspired by his positive outlook at such an old age despite such a list of serious procedures he'd just undergone. And across from me was an 11 week old baby with her mother. She didn't cry for the first 30 minutes, but oh boy, then she must have woken up! Looking around at the situations around me, I felt fortunate that I ONLY had a very manageable form of cancer and was young enough and in good enough health to handle it. I hope all 3 of my fellow patients recover well!

I didn't feel as busted as after my last surgery, but still spent most of the afternoon resting. I wanted comfort food that night, so I had the idea that my Dad could make a boxed chow mein kit from Fall River (nothing better than that!). Unfortunately, the concept of going to the store and buying ground chicken, an onion, and a celery, was a little too foreign for him! So I enlisted my friend Matthew to join us for dinner and supervise (ie. take over) the preparation. Matthew did a great job at preparing the Southeastern Massachusetts delicacy, and it was JUST what I needed. Of course, I'd popped 2 percosets by this point and was VERY loopy. I kept mixing up the order of all my words and was even moving furniture around until my father stopped me! So I'm sure I would have eaten anything given how drugged up/happy I was.

2 days later, now that I've removed the bandages, I'm upset that the port doesn't look as sci-fi as I was hoping. To be honest, I can't even locate it under the steri-strips that are still on there. How am I supposed to upload new skills ala The Matrix or connect with nature ala Avatar if I can't even find my port!? Oh well, I'm sure the doctor will know what to look for.

I'm off to the oncologist for my first round of chemotherapy. Finally the recovery portion of this journey begins! I'll write an update on that as soon as I'm feeling up to it. Until then, thanks again for all the support and prayers. I may not answer everyone's message (it would take me DAYS), but I certainly read and appreciate them all.

Oh, and if you're looking for ways to help out, my friend David is running the Miami Marathon on behalf of the Leukemia and Lymphoma Society. He was training and running long before my diagnosis, and my journey has renewed his commitment to running. Just the other day, he wrote me that my bone marrow biopsy blog entry inspired him to get off the couch and run that 5 mile training race he was supposed to do. If you want to help his fundraising efforts for Leukemia and Lymphoma Society, you can donate via his webpage: http://pages.teamintraining.org/nyc/miami10/dtracyqhgp

I Got Worse Than Shot

I have NOT been looking forward to bone marrow biopsy day at all, but alas it was here. The doctor called me in and there was no kidding around that this was miserable. The actual procedure only takes a few minutes, but wow does it feel like forever.

Needle 1: Anesthesia - not a simple injection. Rather, the needle goes in, and they inject, then in deeper, and they inject again, then in deeper, and they inject some more... and well, you get the idea. And no, it doesn't really numb as it goes along!

Needle 2: Bone Marrow Liquid - this is where the REAL pain began. Fortunately I'm really skinny, so the distance between skin and bone on my hip isn't that far. Basically, the needle goes inside the bone to gather some fluid. And it feels just like that... something going inside your bone. They must have hit a nerve on the way in too, cuz my whole leg was in major pain. I clutched my balled up sweater, concentrated on a dot on the wall, and managed to stay pretty zen. Only a minor sweat.

Needle 3: Bone Sample - my Mother always told me to drink milk as a kid so that I would grow up to have strong bones. She would be SO proud! The problem with getting a bone sample when you have super strong bones is that they really have to dig into you to get that chip! This is the most painful thing that I have ever experienced while awake, especially since my steel bones made it take so much longer! We're talking full on sweat, whimper/screams, and a complete loss of the zen stare/breathing technique I was trying so hard to manage.

When the procedure was over, the doctor told me that recently he's performed this procedure on a cop. The cop said that it hurt more than the time he'd been shot. So yea, I got "worse than shot" today. AWESOME

The walk home (yes, we're urban, we walk) from the doctor's office was SLOW and painful. I kept apologizing to my friend Matthew for limping so slowly... but then again, he's had surgery on both hips, so he understands. Matthew managed to snap this gem of a picture of me shortly after I arrived home. He thought it was very Edie Beale ala Grey Gardens (documentary about Jackie O's crazy hermit cousin)

Other than the literal pain in my butt, my other pain in the butt of the day has been with ordering my chemotherapy drugs. In a nut shell, I can't get them at your average pharmacy, and the private pharmacies that I called claim United Healthcare won't reimburse them. I called United and they directed me to a number of telephone/mail order specialty pharmacies. Not the end of the road yet! One only has some of the drugs, and others have them but don't work with United (I don't know why United would advise me to contact a pharmacy that doesn't work with them!?!?). Even my Dad, as "Health Care King" is completely frustrated by the whole situation. Boo United Health Care!!! I already have one pain in the butt, I do not need another!

Tomorrow is port surgery day. They install a port into my chest for my chemo injections. I will not be completely knocked out, but will have enough drugs that I won't really know whats going on. I'm really good at getting to that "not yet asleep, but not conscious of anything" happy place, so I'm sure this will be a real treat. :-)

They Were Just Begging Me To Shop

So today was bone scan day. I had to go all the way out to Elmhurst to the lab, where they injected me with some radioactive fluid and told me I had to wait 2 hours before they could scan me. Of course, this lab was CONVENIENTLY located across the street from Target and a block away from the largest shopping mall in Queens. They were just begging me to shop for 2 hours, and I happily obliged.

I hadn't indulged in retail therapy yet, but must admit, I had a great time. I began to think... what is cancer patient sheik this season? I needed new lounge/pajama pants for Thursday's PET scan anyway, so I purchased an organic cotton pair (certainly very trendy in our increasingly eco/green friendly world). I also snatched up a bright yellow hooded sweatshirt to keep energy up. And of course, a couple of hats and scarves so that I can accessorize. I think I'm runway ready...

And yes, I also bought new jeans and some cute "going out" shirts. It wasn't all sweatpant sheik.

I also got myself a pill sorter (I feel like a senior citizen). I've started taking allopurinal, which helps my kidneys. Apparently, the chemo will breakdown the tumor and I'll pee it all out (giving new joy to every bathroom trip for the next 4-6 months!). If I don't take the medicine or drink lots of water, I won't be able to break it all down and I'll get really bad kidney stones... and eventually kidney failure. What fun! So anything (including a little plastic box with the day of the week on it) that helps me to remember to take my pills is helpful. I'm sure they'll be even more pills to take once the chemo starts.

The bone scan went fine. I did a good job at not moving for a very long time. I'm sure if you'd asked my mother when I was 5 or 6 years old if I was or would ever be capable of staying still that long, she'd have said "NEVER!"

Tomorrow is bone marrow sample day. Gigantic needle. Pain. And a great opportunity for me to practice meditating and finding Zen while they do it. Can't wait!

Hair Today, Gone Tomorrow

According to my oncologist, I have a 95% chance of losing my hair. Wanting to control things as much as possible (I'm soooo Type A), I decided to take matters into my own hands (or rather, into the clippers of the woman who cuts my hair). By shaving my head now, I can get used to looking at myself with no hair and not be as shocked when it falls out. And if I don't lose my hair, then it's a new beginning in the Ryan hairstyle history.

Without shaving for the past week and a half and not having a hair cut for a month and a half, I was starting to look like Ahmadinejad. (Note, Once at Thanksgiving Dinner, I was voted by my family to be most likely to be confused with a terrorist. FANTASTIC)

So I made the appointment, and my friend Mike offered to go with me and also shave his head. (Ya Ya Sisterhood Solidarity!) After explaining to Athena (the woman who cuts my hair... it's a very Greek neighborhood) why I needed my head shaved, she was more than glad to do both Mike and I free of charge. I closed my eyes for the first 50% of it and managed to not cry (though I was close at times). Here's how Mike and I looked when we were done.

Thanks to my Portuguese features (cough... excessive hair), Mike looks like the cancer patient and I look like an army recruit! We also realized that we now look a lot like my nephew Luke, whose own blog will be direct competition for mine. It's hard to beat adorable baby pictures, so here's my best effort at "doing the Luke".

My facial hair should stay through the chemo treatments. Any androgenic hair, or hair that grows in during puberty, should stay. This upsets me for two reasons. First, it's the exact opposite of my ideal (ie. hair on my head and no where else). Second, I'm forced to wonder if I'll lose my arm hair and leg hair, since my Portuguese genes gave me hair in those areas by first grade! Oh the mysteries of science that I'm about to discover!

Since I'm planning on having facial hair, I will be experimenting with many different styles over the next couple of months. If I can't have crazy hairstyles, then I can have crazy facial hair. This brings me to a point that I realized last night when I went to a restaurant in Chelsea with my friend Josh. Looking around, I couldn't help but notice how everyone there puts effort into looking good (hair, clothing, body, etc.) That's normally how I am too. And I realized that since 8th Grade when I grew my hair out long, I have put time, effort, and a great deal of product into doing my hair, regardless of what style I was rockin at any given moment. Sitting there in this restaurant with no hair made me feel like I wasn't trying hard enough... that I wasn't stepping up to the plate with the A game that I should be. I think that's definitely going to be a challenge for me in the coming months. I need to feel confident in my image without putting product in my hair (or better, without hair!) I need to somehow feel that I'm bringing an A game without that. Can I look that good or learn to feel that comfortable with my image without putting in the effort? Here's hoping!

Here's What The Oncologist Said...

So I was "excited" (perhaps eager is a better word) for my Oncologist visit. Matthew came with me, and while in the waiting room we distracted ourselves with Divorce Court (she's fierce!) and Family Feud. The doctor confirmed it was Hodgkins Lymphoma, though staging can't be determined until I undergo a number of tests. Here's a breakdown of what we found out that day.

Staging: Though unknown, just looking at me it looks like it's "Stage 2A Bulky". "Stage 2" means it's in multiple spots above my diaphram. "A" means I'm not showing symptoms like fever, sweats, or weight loss (not that I have any weight to lose). And "bulky" (which makes me feel fat... then again, I have no weight to lose) just means that my tumor is extra large, and so I'll get a radiation cycle after my chemo treatment.

Schedule: My chemo comes in 2 treatments per cycle. I get a treatment every 2 weeks, so 1 cycle is 4 weeks. I will start will start with 4 cycles of chemo (16 weeks). Then I'll have a PET scan (a fancy CT scan) to see the progress. If, like the groundhog, I still see the shadow, then I get 2 more cycles (8 weeks) of chemo (aka more weeks of winter). If not, then I'll begin the radiation treatment for a month, and be done! So I'm looking at anywhere between 20 weeks and 28 weeks. I'm scheduled to start my first treatment on Friday, January 15.

Type of Chemo: I'm getting the standard ABVD chemo. See the wikipedia article on it for more information: http://en.wikipedia.org/wiki/ABVD . My chances of hair loss are 95%. More on this later.

To Do List Before Chemo Starts:

1) Get a bone scan (scheduled for Monday, Jan 11)

2) Get a bone marrow specimen (scheduled for Tuesday, January 12)

3) Have a port installed in my chest where the chemo will be administered (scheduled for Weds, January 13)

4) Get a PET scan (scheduled for Thursday, January 14)

5&6) Get lung and heart tests. These will most likely be done after my first chemo treatment on Friday, January 15th because we just don't have time to squeeze them in before.

So it's going to be a busy week. Planning everything with the doctor and scheduling all the appointments was extremely overwhelming for me. It's not that it suddenly hit me that I had cancer, but rather that it was really starting to control my day to day life. Hopefully after this next week I can fall into a routine schedule that still allows me to maintain some structure of a normal life.

The Beginning

So here's the beginning...

After 2 months of neck pain which I swore was just tension from work, I finally saw the doctor after my mother and a family friend felt my neck over Christmas and thought those "knots" where not muscle knots but glands. I made an appointment with my PCP for 12/29/09, and dinner plans with my friend Mike afterwards (since this wasn't going to take long). Though first looking at me like I was crazy, the doctor's tone quickly changed after he felt my neck. He called in his partner in the practice and they started speaking medical talk way above my head. Bottom line, I should go to the hospital that night and get it checked out, as the impending New Years Eve holiday would mess things up on Weds, Thurs, and Fri. Starving, I asked if I could quickly have dinner with Mike before the hospital and they said yes. Though a nervous and concerned Mike cooked me something with mushrooms (which I despise), it was nice to eat something and grab a book from his library before the marathon ER experience.

After 4 hours in the ER, a chest xray, some blood work, an EKG, and a CAT scan, my doctor arrived to tell me that they had found a soft mass in my upper chest that was 10 cm x 8 cm (pretty freakin huge as far as soft masses go!). This was an ABSOLUTE SHOCK to me and not at all what I was thinking I would hear. He said it was concerning for lymphoma, and basically, had no other valuable information for me except the referral number for a cardiothorastic (big word) surgeon.

Shortly after midnight, as I left the ER shocked and disturbed, I passed by friend Matthew's apartment. I called him and he was still awake. However, I couldn't really talk (how odd to call someone so late and not say anything). I managed to get out that I was on my way home from the hospital, and that he should come over. He told me to come upstairs while he got changed quickly. Seeing that I was clearly upset, he asked what was wrong. I just handed him the lab results and stood there crying. Of course, if you don't normally read lab results, you have no idea what you're looking for. So after a minute of really trying to figure out what the heck he was seeing, Matthew asked for clarification of what he was looking for. (For those who said that I "came out" with lymphoma very clearly, I say it just depends on who you ask!) I pointed out the section, whimpered more, there was a big hug and i lost it. Later at my own place, Mike came over and I handed him the results too (Matthew was there to point to the appropriate sections). It was a TOUGH night, but after discussing it a bit and vowing to fight it, we started talking about other subjects which lifted my spirits and got my mind off of it a bit. I'm truly grateful to them for being there in my darkest hour, giving me strength, and helping distract me from the scariness.

The next morning I had to call my parents, which I clearly was not looking forward to. I called my father on his drive to work and advised him to call me back when he was at the office (and no longer operating heavy machinery). As I like to call it, he jumped into "Health Care King" mode. I'm truly blessed to have such a tremendous health resource at my disposal. The information and expert opinions he obtain in the first few hours really helped ease my mind. I then called my mother, who was dizzied by the information, stopped writing, and just starting listening. Both phone calls were tough, and I bawled after hanging up on each. It's not really a conversation you ever think that you'll have, and it's so much harder over the phone rather than in person. Lots of deep breaths.

I spent the rest of the morning going back and forth with updates, telling my brother, trying to figure out if my new health insurance would cover this, and scheduling a "come in right away" style appointment with my cardiothorastic surgeon, Dr. Lajam. He confirmed a lot of what I'd already learned via some experts at BCBSRI. It felt good to have 2 people saying the same thing: it's common in my age group among males, it's very easily treatable, and it has a high recovery rate.

Dr. Lajam helped me understand that my tumor was pressing against some important veins coming up from my heart. He likened it to a 4 lane highway becoming a 1 lane highway; there's congestion and more traffic on side roads. Basically, the smaller veins going to the same place were getting more blood and pressure, causing them to swell. I believe this is called Supra Vena Cava Syndrome. My tumor was also pressing against my trachea, slightly restricting air flow. He wanted to do the biopsy the next day, but with the holiday, it was impossible. So we scheduled it for Monday.

I went into work after the doctor's appointment to abuse their fax machine. Both my coworkers were there, so I told them. They were extremely supportive, and I'm sure like me, nervous and scared! But we were all optimistic, and I shared with them my desire to keep things as normal as possible throughout all this, including work. I made several other phone calls that afternoon and evening to tell some close friends. I swear, I need to upgrade my phone plan with Verizon. It's probably the most I've used a cell phone in one week!

Welcome To My Journey

Remember that time I had hodgkins lymphoma???

Yea, hopefully it just becomes a memory and nothing more.

I've been talking to a lot of friends and family and distant acquaintances in person, via phone, via email, via facebook, etc. And frankly, 24 hours after "Coming Out" (who thought I'd go through that twice!) with lymphoma, I'm sooooooo tired of talking about it! :-) I've come to realize that it's starting to scare others more than it is me! So I thought a central resource of communicatoin from me, available to everyone (whether they are on facebook or not! ahem!) would be the best bet.

Now, I traditionally have hated blogs. I don't care what other people had for lunch or about their whiny outlook on the world. The only blog I have ever enjoyed is my nephews, and that's because it's all baby pictures, and who doesn't like baby pictures!? The last time I kept this detailed an account of my life was when I was on Semester at Sea. So let's pretend this journey is about as fun, interesting, and exotic as that one! There will certainly be discoveries and awkward encounters!

So follow along on my VERY candid journey through hodgkins lymphoma, narrated as only yours truly can.