Well, here I am in beautiful Bethesda, Maryland! Well, actually my hotel is in Gaithersburg, MD, about a 20-30 minute drive away, but much cheaper than staying in Bethesda and I am now officially an expert at the subway system here so it's still quite convienent. And unlike the Chicagoland area (at least from what I'm reading on facebook), we have no snow here-yay!
So, it's been a LONG few days and I thought I'd catch you all up on the happenings in Amberley World/Cancer Land...
On Tuesday, I had probably the coolest experience of my life when I got 4 free tickets (in the 106 section-woo hoo! I've never had good seats to a Hawks game before!) to the Blackhawks game as they faced off against the Pheniox Coyotes. Section 106 is the PERFECT section for a Duncan Keith fan like myself because it is right behind the Hawks goalie (for 2 periods anyway), thus I got to spend lots of time admiring our defense and if you've ever seen my favorite commercial of all time-the Duncan Keith "OneGoal" ad where you get to watch him work-out (yum), they say he logs more ice-time than any player in the NHL because he takes in 30% more oxygen than the average human (is it his super human lung capacity or his super human work ethic? Lol, I've seen that commercial too many times...but I digress.) Anyway, the game was not their best effort and we lost 4-1 (Sharp stopped it from being a scoreless game on our part, gotta love Sharpie!), but the best part was I got to meet Duncan Keith after the game! A big shout-out for this opportunity to the people who made it possible-Dustin Sublett, Ben Corey, and Nicki Lalor-thank you!!!
Anyway, myself and my mom, sister Kiaya, and cousin Kelsey, all got to hang out with Duncan Keith for quite a while actually. I think we even managed to keep him pretty entertained with our crazy antics-he probaby won't forget us anytime soon! And Patrick Sharp happened to walk by and seemed intrigued by all the crazy stories, impersonations, and giggling that was going on and sauntered over and hung with us a few minutes and took some pictures. Bonus! Frolik also walked by and said hi (he looked really shy, awww!) and apparently Seabrook walked by, but I was so entranced looking into Dunc's eyes that I missed him :( Anyway, I'm very proud of myself that I was able to keep my cool and joke around despite having stars in my eyes :)
Enough about the Blackhawks though, you probably want to hear about the cancer stuff...So, after the game and the Keith meet-and-greet, it was around midnight and my flight to Maryland was scheduled for 6:05 am, meaning I was supposed to be at O'Hare by 4. Figuring it wasn't worth driving 75 miles home and 75 miles back in that timeframe, we went to the Oasis and got a snack and uploaded pics from the game and had Kelsey drop us off at the airport around 1:30 thinking we could check in, get past security and take a nap by our gate. Apparently, O'Hare isn't hustling and bustling around the clock and you can't check in at American Airlines until 3:30 or get through security til 4 so we spend the next couple hours on a crowded bench in baggage claim, no sleep there...
When my mom and I were finally able to go through security and get to our gate, our flight was delayed by an hour-oh and there was a girl sitting by who I literally thought was going to hack up a lung. I'm still immuno-comprimised from my last transplant so I had to take an Ativan to calm down my fears that I was going to catch some crazy killer illness from sick-girl. But I downed some EmergenC packets and fortunately didn't sit near her on the plane and seem to have gotten out unscathed-woo hoo!
I slept like a baby the entire flight (so I managed to get in a good maybe 2 hours of sleep) and we landed at like 9:30 MD time. We had time only to get our bags and then the NIH bus picked us up from the airport and took us to the hospital. We had to go through security and then to all my appointments with our luggage and everything lol! Since NIH is used to people coming from all over the country they are prepared for things like that and actually had a room of lockers to keep our luggage in so thankfully I didn't have to drag my baggage around all day.
I first had bloodwork done, then had a full-body CT scan done. I was really nervous about this, not because it requires drinking about a gallon of barium or being injected with dye, but because I was worried that in the month and a half that it took me to get 2nd and 3rd opinions, make my decision, and plan this trip to Maryland, that my cancer had spread EVERYWHERE. I kept just envisioning it all over my body and the thought was freaking me out! Thankfully, somehow the CT revealed that my liver spot hasn't grown AT ALL (in fact, it was slightly smaller, but this is likely due to variance in scanners, not actual shrinkage) and the only things that have grown were a couple of enlarged lymph nodes in my abdomen. So basically, better results than I could have hoped for!
I met with my transplant coordinator Sheila, and two of my other doctors-Dr. Halverson, who it appears will be my day-to-day doctor, and Dr. Shaffer (who is really cute and doesn't look any older than me, so yay! A cute doctor for once!). Dr. Halverson said that my CT came out about as good as it possibly could have and that you could fit all the cancer in my body in a dixie cup...I like that! It sounds manageable-wish I could just scoop it out and be done with it, but oh well, at least there isn't much cancer to eradicate! He also said there are always unforeseeable things so with cancer you can never say anything for sure, but that I am pretty much the ideal candidate-I'm young, have a fully-matched sibling donor, low tumor-burden/disease, no symptoms, otherwise healthy, have always been chemo-responsive in the past-and doesn't think there is any reason I can't expect to get great results from this trial (more and more stuff I just love to hear!). I officially signed the trial papers and am now enrolled at NIH/NCI-woo hoo!
Also, they said 2 things that make me happy for vanity purposes. 1) It is entirely possible I won't lose my hair. Though I might from this chemo, the drug that is notoriously for leaving baldies in it's wake is given over a much slower rate, so it is possible that my hair will stay. Time will tell I guess, but the transplant itself won't make me lose my hair, so either way, I probably wouldn't be bald as long as last time, which is a plus! 2) I will most likely not need another Hickman catheter! YAY! My friends may remember this as my "spark plugs"-basically a tube leading out of my chest connected to 2 lumens. Not very attractive, plus you can't get it wet so no showers, only baths, ugh! But they said I'll get a PICC line instead, basically the same thing but it my arm-much less obtrusive and you can just wrap it up to shower. This is a big victory for me lol :)
Anyway, I FINALLY got to go to our hotel, which turned out to be beautiful and very home-y (a fellow patient's mom recommended it to me and I can see why, it's great) and they give NIH/NCI patients a discount. Too bad I'm not drinking because every Mon-Thurs night they have a "social hour" complete with beer or wine, but also a full-spread of food. We happened to finally get there at 6:30 pm, so about a 1/2 hour before it ended, and got delicious spicy Thai-lettuce wraps, home-made roasted garlic hummus with french bread, home-made tomato soup, fancy salad bar, Terra chips, chips and salsa, delicous cookies......After not eating ALL DAY and barely sleeping, this was just what we needed. We ate and promptly passed out.
Next morning, after a quick, delicious breakfast from the breakfast buffet at the hotel, we grabbed the hotel shuttle at 7 am to take us to the subway and from there to NIH. I was admitted into the day hospital/infusion room thinking it was going to be a short, maybe couple hours, and I could leave. I quickly found out that was not the case. As Dr. Halverson later told me, "Well you know what NIH stands for right? Never in a hurry!" (Okay, so I have more faith in his medicane than his joke skills, but...). I think being that I just signed onto the trial protocol the night before my orders didn't get in right away, so I waited and waited, and waited...I finally got hooked up to some fluids around 12:30 (so much for an 8 am appointment!) and they started my Rituxin, which I've had many, many times before and is actually a monoclonal antibody (and a mouse protein...eww!) so it's like a smart chemo-it only attacks the bad cells and leaves the good ones that are usually sacrificed (like hair) alone. However, it's still a strong drug and lots of people have horrible reactions to it (I ended up hospitalized the first time I got it, though no problems since the first time) so since I hadn't had it in 6 months or so they had to give it to me at a very slow rate, gradually increasing as they saw I was tolerating it.
On a side note, because of risk of reaction to Rituxin they always dope you up with an insane amount of Benadryl. It was at this point of course that Dr Fowler decides to come say hi and check on me. So he woke me up and we talked (me probably a bit drunkenly lol), but it's funny because last time I met him I fell asleep in his office waiting for him so he probably thinks all I do is sleep lol....A thought which was probably solidified when he came back a half hour or so later and woke me up again to have me meet one of his success stories in the flesh. The girl he brought to me is only a few years older than myself, had the same cancer and sub-type (but did not respond to ANY chemo and had to go to transplant with a huge tumor still in her, not a good situation!), and was in the same clinical trial I just enrolled in. I've actually met her in a Primary Mediastinal B Cell Lymphoma facebook group I'm in and we've talked online before and she was one of the reasons I decided to go with this trial so it was cool to meet her-she looked great and healthy, even training for a marathon right now! So that was awesome, except that, like I said before, now all 3 times I've met Dr Fowler he's had to wake me up from sleeping lol!
Anyway, after the sleepiness wore off and the Rituxin was all released into me, I got an infusion of Fludarabine, a drug I've never had before. Hopefully it'll suprise my cancer with ninja-like stealthiness and it won't know what hit it, that's the plan anyway.
So the Rituxin and Fludarabine are the FR part of DA-EPOCH-FR. The DA just means dose-adjusted, but I'll keep it on because it makes it sound like I'm getting some really long, crazy chemo. The P is for Prednisone, which is a nasty steroid pill I have to take only while doing chemo and I think the C is for Cytoxon, which if I understand right, I'll be getting an infusion of the last day. That leaves the EOH-Etoposide, Vincristine, Adriamycin-which I get the pleasure of doing 24 hours a day, via my awesome new chemo-infusion system located oh so convienently in my new constant accessory for the next few days-the fanny pack. Yes folks, I am bringing back the pack. When I put my coat over it it looks like I'm about a good 5 or so months pregnant lol. Anyway, it's not a very cool look, but it's better than being inpatient in the hospital, which is the alternative. So I'll gladly wear my fanny-pack with pride! If anyone's wondering about why they do this, I think the idea is giving my insides a long-slow soak in these magnificant drugs, which has shown in trials to be more effective and actually lessens the toxic effects of them-specifically the cardiac-toxicity related to Adriamycin (the H). There is a life-time limit which I'm pretty much at because I had it with all 8 rounds of R-CHOP but supposedly this delivery of it isn't nearly as damaging and thus I'm still able to get this regimen.
Anyway, so that's where things stand at the moment. I made it through the night with my chemo "baby" attached to me and I have to go to NIH later this afternoon to get my bag changed. So far I feel fantastic, no nausea, fatigue, nothing. Just trying to stay as hydrated as possible and be a good chemo patient :) I should be allowed to fly back home on Tues night or Wed morning so I will be back in Hebron soon enough. Hope I didn't bore you all with my long tales of Blackhawks and chemo! Thanks for caring and taking the time to read!
Love you all!
-Amberley
