Iron Man Saved The Day

One day before my lymph node biopsy, and I have already had a major break down. I knew from the moment I got my schedule of this whole ordeal that this week was the first week of this hellish month. It started off easy with simple blood work, CT scan, heart ultrasound, a trip to see a dermatologist and an endocrinologist...all things I was able to do on my own. This was just the calm before the storm.

I left the house, with my mom, at 6:30 in the morning in order to reach NIH by 8am (traffic's a killer when you live out in the country and have to go into the city). I dressed for the occasion with my Deadpool socks on...the thought of "get it over with" racing through my mind. First I had a PET scan...I've lost count as to how many of these I have had in the past. For those who don't know what the protocol is, you are taken back into a room where they test your blood sugar (the finger prick test) and then hook you up with an IV. Next thing you know, they are giving you an injection of radioactive tracers and then they leave you alone for an hour so the tracers can work their way around your body. Then after an hour goes by you go and get a full body CT scan. This whole process takes about 2 hours. 

Anyway, I was getting my IV hooked up, and for some reason I started to become anxious and teary-eyed. When the technician (who looked to be in his 50's) asked me what was wrong, I told him that I was very nervous and quite scared about my upcoming clinical trial this next week and how it's incredibly risky. He then responds with "I know how you feel...my mother is having heart problems and will have to do a clinical trial"...my jaw almost dropped, and not because of his mother. First of all, you don't tell a cancer patient "I know how you feel" because 99% of the time YOU DON'T. Every cancer case is different and everyone handles it in their own way. Secondly, he was comparing me, a 24 year old facing a terminal diagnosis, to his mother who I would assume is over the age of 65...WHAT?!?!? That was enough to set me off first thing in the morning.

After I got through my PET scan and met up with my mom in the cafe for a light brunch, I had to make my way back to the radiology department where a nurse could check my veins to see if they would be ok for the upcoming trial. Now I had been told by the research nurse a few days ago that I will most likely not have any complications here and have no need to worry...therefore I didn't think much of it when I walked over to the appointment. Unfortunately...the moment I sat down and the nurse looked at the veins in my arms and hands, she told me that they wouldn't be able to put catheters into my arms for the clinical trial...instead I would need to have a catheter line surgically inserted into my neck or groin the Monday morning before I start the 4-6 hour long clinical trial procedure.

At this point I had just about had it. I pulled my beanie over my head so no one could see the pure anger heating up on my face. I literally wanted to scream. Here I am, trying to be strong, trying to be brave, doing what I have to do in an attempt to save my life...and yet it feels like no matter what I do, nothing can stop this snowball of bad luck/news from growing. I'm already trying to wrap my head around the fact that despite having a chemo port implanted in my chest, the folks at NIH want to put a picc line (an implant catheter) into my arm for extra measure. Now I have to go an extra mile to get ANOTHER procedure to get a catheter placed in my neck. Not to mention I still have no idea what the timetable is for this upcoming week, I don't know my odds, and my family is struggling with the possibility of my having complications. I immediately broke down and I wish I had a pillow to scream into.

Finally I had one last appointment for the day...an MRI. I had only had one of these before and it wasn't a pleasant experience as my ear plugs fell out half way through and the technician didn't want to stop to help. I had to lie still with the clanging noises blasting in my ears while stressing over the thought of having cancer at the age of 22. When I was brought back to get my second IV hooked up for the scan, I told the tech everything that had happened before. I was kind of an emotional mess remembering that and also because of what had happened at the last appointment. He was very quick at reassuring me by giving me a buzzer to press in case that should happen, so they could stop the scan and help me. He then put my ear plugs in and placed a rather comfy set of headphones over top. I joked saying, "You should hook up some music to these!"
To which he replied ,"No problem! What music do you want us to play?"...in disbelief I said ANYTHING!!! He laughed and asked me what genre of music I like to listen to when I'm down. I blurted out classic rock. All of a sudden I started hearing music in my ears...and through the welled up tears I started to laugh as well. The moment came when I was told the scan was going to begin and just as the table started rolling me into the machine I heard it.....
"*click* *click* *click* *click* I AM IRON MAN!!!!".....I found my strength again.

I left that appointment feeling so much better thanks to the AWESOME experience the technicians gave me. I even gave them high fives on the way out. Not only was this day ending on a better note, but it gave me new confidence going into this. This month is only going to get harder, each day being more difficult than the last. I'll admit...I'm scared, vulnerable, and still worried about what the future holds for me if I have one, but I'm going into this clinical trial with guns blazing and a determination to fight.

That being said...there's one thing I want to discuss before I end this post. In the past several days I've been getting a lot of people acting like I'm already on death's door...just so you know, I'm still kicking and walking on my own. I also deal with people who CONSTANTLY tell me to stay positive and don't stop fighting....as if I haven't been positive for the past two years! I never stopped staying optimistic and I have NO intention on stopping this fight. The one thing I can't stand more than that, is the people who are delusional or in denial about the severity of the situation. I am in a spot where if I don't do anything, I die...but if I go into this clinical trial there is also a 50/50 chance of dying as well...only quicker. Now I am hoping that I pull through and survive, but I'm not going to dismiss the feelings I have about the possibility of dying and just pretend that everything is hunky-dory. So to address these people and pretty much everyone...if you want to talk to me, then talk to me as if cancer doesn't play a role in my life. Talk to me like I'm still Maddie, because believe it or not, I still am. And especially don't tell me things like "oh I can't believe it's as bad as you say it is" or "you're going to be cancer-free soon enough"...it honestly doesn't help me to think like that. I think I might elaborate a little more on this topic in my next post...and if all goes well, I plan to write even more often this coming up week and the next. For now, I need to call it a night as I have my 4th lymph node biopsy to go to at the crack of dawn....yay....

Drawing On Strength

Hey peeps! So I just finished my second immunotherapy treatment yesterday. All went well and since they monitored me the first time, they didn't need to stick around long and I got to leave right after the needle was out which was nice. Though I have acquired my next symptom...nausea. Although very very mild, it still is very triggering any time anyone so much as mentions food or shows me a plate....my appetite is totally gone and I keep getting small waves of feeling like I'm gonna be sick. But despite that and the constant fatigue that has been plaguing me since my first treatment, I decided it's time I post an update on here. So hello again!

Since my last post (which I apologize for being about two weeks ago) I've been dealing with an emotional roller coaster. It hasn't quite gone away yet as I had a minor meltdown even at my treatment yesterday. The fear keeps creeping in the back of my mind about the unexpected to come and the loneliness I'm going to have to endure. But I've been trying to keep my mind distracted on other things as much as possible. It's always been a challenge for me when people say "go to your happy place" because I never really established one particular place in my head. I also have difficulty focusing on a specific spot in the room because then that just makes thoughts move through my mind like bullet trains. Sometimes instead I try to look at pictures and ask myself things like "where/who is this? what was this picture taken? who's taking the picture? what would I do if I was there?...etc"

However this was impossible this past week as I went into the dentist again to get some cavities filled. It's mandatory to do all dental work before you go in for a bone marrow transplant...I guess to minimize any chance of infection. So there I was lying back in the chair facing the ceiling waiting for my mouth to go numb. I can't exactly hold up a picture to my face to distract myself from the drill so instead I asked if I could put in my earbuds and listen to some music on my ipod. I got the ok and was told to just close my eyes and relax. I didn't exactly go to a "happy place" but when I turned on my ipod, I realized the last thing I was listening to was movie soundtracks...and I had an epiphany.

All throughout my childhood I did competitive figure skating. I used to pick my own pieces of music to skate to and they were always from movie soundtracks. I skated to everything from Pirates of the Caribbean, to Harry Potter, to Titanic, even the musical Phantom of the Opera and more. Every time my music would start I would envision myself as a character in that movie/musical and to me it wasn't just a skating program...it became a performance. Since my skating days, I've still embraced soundtracks and listen to them when I'm alone. Sometimes I find myself choreographing skating routines or act out scenes from that movie in my head for fun.

(This is me skating to Titanic in 2006)

But that day at the dentist was a bit different. The movie soundtrack that came on was from a Marvel superhero movie (specifically one of the X-men movies). With my eyes closed, I found myself not choreographing something, but seeing one of the characters in my head...Professor X (James McAvoy version although I have nothing against Patrick Stewart). He told me to make a list in my mind of every X-men superhero I could draw strength from and look up to. He told me with each one to really invision them and think of examples of moments where they showed that strength. So as the music started intensifying in my ears and the dentist started to drill, I went to work.

1. Mystique - for not being afraid to be herself
   
2. Magneto - for his passion in standing up for what he believes in (even if his views are sometimes in the wrong)
   
3. Beast - for accepting what has been done to him and moving forward with a positive light
   
4. Wolverine - despite having sass and a temper, he always puts those he loves first
   
5. Nightcrawler - for always holding true to his faith
   
6. Deadpool - HE'S A FREAKIN CANCER SURVIVOR AND KICKS BUTT!
   
7. Professor X - for overcoming his fears in order to do the right thing and going above and beyond to help others like himself
   

Those are just a few of the ones I listed. My list went so long that by the time I finished I was told the procedure was over and I could get ready to go. When I left and got in my car I finally realized...this could be my way with coping. With the hundreds of soundtracks I have on my ipod, anytime I grow fearful of something, I can draw on strength of my heroes/favorite characters and it will be a lingering distraction and a way to cope with my fear. I don't need a happy place to run away from my problems...what I need are people I can look up to in order to face these difficult times that are approaching. I got this!

A Never-Ending Battle

So hey peeps! It's been a while since I've written in this blog...and I kind of failed at it last year during my chemo treatments. So I figured I might as well just do a recap of everything that took place last year up to now...cause it's a rather intriguing story and not to mention, an ongoing uphill battle. So hang on tight....it's quite the ride!

After my butchered biopsy (which I still have a pretty wicked scar on my neck from), I had my first PET scan and my first bone marrow biopsy. The PET scan wasn't as bad as what I thought it was...just very time consuming. Unlike CT scans and MRI's, you get injected with this radioactive dye and you have to stay in solitude for I think about 45 minutes or something like that. Then you go into a CT scanner and the radioactive dye picks up the glucose from the cancer cells in your body and confirm what is there. I find these easier than previous scans however there is a lot of radioactivity so they can't be done back to back. The bone marrow biopsy is definitely a pain in the rear...and I mean that quite literally. To be light on the subject, they stick a needle into your hip bone and extract bone marrow for testing. Luckily I opted to get some meds to make me a loopy and tired but I'm still awake during it which is a bit unpleasant.

However I made it through and got the good news that I didn't have any cancer in my bone marrow. This meant I can move on to the next step...chemo.

Now when you have to go in for chemo every other week, they suggest you get a chemo port put into your chest...this makes accessing a vein a breeze....the procedure is quite awkward but done rather quickly. Then I went to my first chemo treatment a couple days after that. I was on ABVD chemo...which are four drugs administered once every other week for 6 months. My mom luckily was able to work that in her schedule and brought me to every appointment from July to December. If it weren't for her, I don't know what I would have done...she was there holding my hand through it all...thanks Mom, I love you.

Anyway, as I went through every treatment I noticed my body didn't react like a standard cancer patient...which could be because I was generally in good health and I was young. I didn't loose ALL of my hair but lost about half and thinned to the point where I had awkward patches. I also didn't experience much nausea until the last two treatments in December...those were the hardest. Instead my biggest symptom was mouth sores but even went away with each treatment. And despite the emotional stresses I went through and the fact that I had to ultimately take disability leave in August, I was one of the lucky chemo patients. By the end of it all I celebrated Christmas with family with the thought that the new year would be better and had so many plans. I was going to go back to work, I wanted to travel to Europe in the summer, I wanted to get an apartment, and I wanted to go back to school. But everything was completely demolished the moment I had my first PET scan after chemo.

The scan came back with a little tiny acorn of a cancerous reading in my chest. We thought it could be a false positive so we aimed to try again after a month (you can't do PETs back to back). When I did it a second time, I got the awful call from my doctor telling me I had to skip work and come in. There she told me words no person ever wants to hear. Not only did my cancer come back, but it grew 3X it's size in one month and was past the point of chemo/radiation. I would ultimately need a bone marrow transplant with a donor and she left me with a 5 year life expectancy. This was coming from the same doctor who told me just last year that this was curable and all I needed was chemo. I was broken...and I wouldn't have it.

I sought a second opinion at Johns Hopkins in Baltimore and there they actually gave me options. They would put me on immunotherapy and then because my bone marrow came back negative for cancer a second time, I would be able to use that for my bone marrow transplant. It's quite complicated when explaining how it works, and I will probably mention it when the time comes. But for now....this is what I face....and this is latest update.

I start my immunotherapy on May 6th and I do this every 21 days for 3 months and then I go into prepping for my transplant. I'm very nervous, very scared, and very very on edge about this. But as I've learned this past year...I need to take one day at a time. If I do everything Johns Hopkins says, I will be able to stay alive for most likely longer than just 5 years...if I do nothing, I won't even make it to the end of this year....and that's not an option for me. This may be a never-ending battle...but what life isn't? And this is the thought that makes me feel normal.