Day 285 - The Unreachable Star

Hey folks...I’m not dead!

I’m sorry it’s been a while. I had intended to post several times, including when I reached the 6-month post-transplant point, but so much has happened and time has been very scarce. As I mentioned in my last post, I jumped right back into my studies the moment I got discharged from Baltimore, and it has seriously eaten away at the little free time I had to begin with. These past few months have been extremely eventful, to say the least, so bear with me as I try to summarize them and bring you all up to date.

On September 20th, I made it to the 6th-month mark, and my scans showed more unexpected improvement from the last! Although the cancer had been completely eradicated, my new immune system went above and beyond. The scar tissue that lingered inside after all of the many treatments I endured decreased significantly, to which my oncologist said that this is a very good sign. My blood type also switched over from my old type O Positive to what is my sister’s type, B Negative. My energy is slowly, but steadily, coming back to me. By the time I started my full load of courses on campus for the fall semester, the ringing in my ears had subsided, and I was even able to jog my first mile (something I didn’t even think would be possible so soon after a transplant).

At this time, I also started the re-vaccination process...ugh! Since my immune system was essentially the same as a newborn child’s, I had to get the whole nine yards of booster shots. For the first round of shots, I ended up getting a total of 7 shots (including my flu shot) all in one sitting. My takeaway from that experience is I now understand why children don’t like shots. If you ever find yourself getting a Hepatitis B shot, brace yourself...it’s not pleasant. Otherwise, despite the following two days being sore in the arms, I adjusted and distracted myself with my schoolwork.

In October, I decided to take a chance and audition for the theatre department's holiday showcase. I initially went in with absolutely no expectations, especially since it had been over 8 years since I auditioned for a theatrical performance. When I got my first neck biopsy in 2015, my vocal cords didn’t adjust well, and I still have trouble hitting certain notes that would normally sit easily in my range. However, I managed to blow my expectations out of the park when I got the courage to sing “If I Loved You” from the musical Carousel. I didn’t even believe how well I did until I listened to a snapchat recording my friend took of my audition. It felt so unreal...unreal to think how far I had come. It was as if everything suddenly fell into place at that moment...and for the first time in a very long time, I felt like me again. The reality set in especially after I got the email telling me I made it into the show, where I made many new friends. I had a blast singing Christmas songs to veterans and their families at the Walter Reed National Military Medical Center. It was as if the past three years were simply a nightmare I had woken up from.

Sadly, November proved to be incredibly challenging. In the midst of so much going on at school, rehearsals, and doctors appointments, I ended up having to take a whole week off from class due to a really nasty chest cold. It was a smack in the face because this should have been something I would have recovered from easily had my immune system not been so low. Instead, I lost my voice, was put on a TON of drugs, and could barely manage to leave my bed. At the same time, I was facing many family and home stresses that started to take a toll on my mental health. Survivors guilt also crept in, and I had this overwhelming and reoccurring feeling like I’m not supposed to be here...that I didn’t deserve to be here. I knew that I was not ok, but felt like I needed to put on a happy face and pretend that everything was ok. I funneled my pains and dark thoughts into a box in the back of my mind. It wasn't until December arrived, that the box imploded.

The holidays did not turn out how I had originally anticipated it to be like. Tensions at home were extremely high, and exam week was approaching. I thought that if I put all my focus and hard work into my studies, that all will be well in the end. I lost so many hours of sleep and worked ridiculously hard to make sure that I ended the semester with straight A’s. But as soon as my professors logged in every perfect grade, the world hit me in the face. The box in the back of my mind opened up and hell was unleashed. I felt trapped, afraid, and anxious about the future. Tiny things were triggering major panic attacks that would lead to multiple questions. What do I do with my life? Where do I go? Why am I still here? Will the cancer come back? How much borrowed time did I get from the years of treatment?  Is it even worth it?

Poison was seeping into my head...and it felt like I was very alone. Despite the major accomplishments I made, the satisfaction from them was not enough to overpower these attacks. However,  on December 17th I hit a lot point, and I decided to play some showtunes on a televised music station. The first song that came on was ‘The Impossible Dream” from Man of La Mancha...and I instantly felt at peace.

I was reminded of my grandmother, who used to repeatedly play that song over and over for me when I was little. It later dawned on me that, 8 years ago on this exact date, she had peacefully passed away. But what also occurred that same day, just last year, was the moment I made the decision to take on my 5th and final chemotherapy. Despite doctors and specialists telling me how risky it was and the likelihood of it not working, I chose to fight and persevere. Earlier this year, a miracle happened, and I was put into remission after only two rounds of this chemo and eventually given the green light for a bone marrow transplant. I knew in that moment that my grandmother was there with me that night. She was one of the reasons I fought so hard to live. She is one of the reasons I’m still here, because I “still strove with [my] last ounce of courage, to reach the unreachable star.”

The next day, I started to pick myself up again, and I set a plan in motion. I want 2019 to be my redemption year. I want this next year to be the year where I take back what cancer took from me. I’ve already started on this path with my studies, but I don’t want it to stop there. Because of cancer, I had to plant my feet in the ground and stay with my parents while those around me were moving on with their lives. Because of cancer, I was forced to abandon the workday world and limit my activity and interactions with others. Because of cancer, I gained a lot of weight, lost my hair, and inevitably became incredibly self-conscious. Because of cancer, I lost friends either from fear of associating with someone like me or from the disease itself. Well, you know what? I’m done sitting by and letting this cancer claim undeserved victories! 2019 is the year I take it all back! And I plan on using this platform to show just how far I'll fly!

"Here I go, and there's no turning back! My great adventure has begun! I may be small, but I've got giant plans to shine as brightly as the sun!!"

 -Jo March from Little Women the Musical

Day 106 - Post Treatment, Still Fighting

It wasn't until I started writing this post that I realized I'm post 100 days after transplant. Wow. Already I feel like I've come so far, and yet I have so much more ahead of me; just thinking about it makes me queasy.

At the start of last month, I took on a major stepping stone; I went back to school for an online summer course. These last few weeks have been very difficult as I have no energy to do much, and I'm still dealing with some lingering side effects from transplant. However, the great thing about this online class is that I can do it at my own pace (for the most part) and it gives me something to do. If I didn't have that, I'd be extremely bored and most likely severely depressed. I'm not even allowed to go back to work until next year when my blood counts are back and I've gotten all my childhood vaccines again. At the moment, I essentially have the immune system of a newborn baby.

Physically I'm still very weak, which definitely has an impact on what I can and cannot do. I sleep for a majority of the time and have hardly any appetite. I've also been dealing with this pulsing sensation in my ears that just doesn't seem to go away. After seeing an ENT specialist, I was left with more concerns than I would have liked. He couldn't tell me if this was something neurological, vascular, or nothing at all...but he did have suspicions on whether it was related to the blood clot I had at the end of my transplant ordeal. Next month I get an MRI to check and see if there are any problems...if so, I might need surgery.

Needless to say, this past month has been emotionally difficult considering everything going on. My hair is starting to come back, and I've managed to lose 10 pounds since I was discharged, thanks to my waning appetite. I resumed my perfect attendance at my cancer support group and have even caught up with a few friends of mine. I even managed to go to a Celtic festival with my mom and sister for a few hours (I had been dying to eat some haggis since my trip to Scotland). Despite all these wonderful things happening, I still feel empty and low. I thought things would start looking better once I was out of transplant, but the reality is that the fear of relapse is ever more present.

Everyone keeps telling me to "Stay positive!" or "You're cured!" and "You can finally go back to normal life!"...and I'm really trying...but the PTSD from dealing with this transplant, and everything that has happened in these past 3 insane years, is starting to catch up with me. It's gotten to the point where I had to decide what I want to do with my life based on my health predicament. I've been avoiding the summer sun in fear that just the mildest burn could end my life. Every day I have a moment of panic where I quickly check my neck for fear of finding a lump again. I can't sleep at night, because I keep having nightmares where my transplant doctor tells me my cancer has come back and there's nothing left for me. Everyone has been complimenting me on my hair growth, but I can't even enjoy it since I fear for a future where I'm told that I will have to lose it all over again. I try so hard to repress the fears, but it's just too much. There are very few people who seem to really understand as well. It's frustrating to think that even after all the treatment I've endured, I'm still fighting...only this time for sanity and peace of mind.

Thankfully, I'm planning to take some time for myself and get away from home at the end of the month. I'm hoping to be in a better state of mind when I return so that I'm ready for the fall. In September is when the real showdown happens: two transplant follow-ups, a CT scan, and I begin the childhood vaccines. In the meantime, I'll just keep writing essays for my class and distract myself with the World Cup. I may never "go back to normal life"...I've already accepted that...but I hope that with time I can move forward and away from this nightmare. I just have to remember that there is still so much left for me to do and that even in my darkest moments, there's so much to be grateful for.

Anyway, I hope you all have a wonderful 4th of July, and I'll try to update again on here soon!

Day 63 - Home Sweet Home

Hey everyone!! I'm so sorry...I had meant to post an update much sooner than this, but things were constantly getting in the way. For one, I'm still experiencing headaches at an alarming rate. I'm hoping that will die down as the days go on as it's medication related and I discontinued a pill that caused the horrible pains just 3 days ago. Another reason I've been delayed in writing up a blogpost was due to the agonizing pain of a blood clot that formed in my jugular vein which thankfully I caught in time. I was dealing with fevers and couldn't sleep since just the slightest touch to my neck was excruciating. At first, the doctors thought it was simply muscle related, but after doing an ultrasound they immediately found the clot and started me on a blood thinner injection I have to do twice a day for the next five weeks. This all happened just days leading up to my discharge.

Discharge day was last Thursday and what I was anticipating to be a smooth and easy day, turned out to be anything but. I started off with getting my catheter taken out. It was quick and easy, but it definitely stung like a bee sting thanks to all the alcohol prep and the fact that they had to put pressure on the spot of my neck where my clot is as they took it out....not pleasant. Then I came back to the cancer clinic to get my lab results back only to find out that I needed a blood transfusion. They were ready to access my chemo port but after several attempts poking me in the chest over an hour, they didn't have any luck. My port hasn't been used in about 2 months (it had been covered by the bandaging of the catheter) and it was quite tender being in the same spot as where my catheter had just been. In the end, I had to get a lovely jab in the arm with a huge IV. Again...not fun.

Finally, the day came to an end, and I was able to leave Baltimore the next morning. Part of me was relieved to finally be away from the constant appointments and being stuck in the tiny apartment for most of the day. Groundhog Day finally came to an end!! I'm happy to be around trees and greenery again instead of the cold grey buildings of the city. I love city life, don't get me wrong...it was just not ideal being in Baltimore of all cities. Still, I can't help but count my blessings that I was able to get such great care from Johns Hopkins...I can't recommend a better cancer center.

I'm taking things very slowly though as I am trying to readjust being back home. On the first day back, I managed to pull muscles in my legs, because I wasn't used to climbing 2 flights of stairs over and over while unpacking. Whoops. Now that my legs are recuperating, I'm looking forward to what the summer has in store for me. I'm taking a summer course starting next month and I plan to slowly build back my endurance so I can start working out again. It's still too early to go back to work though and I've been told I won't have my old energy back until probably next year. That's ok...if there's one thing cancer has seriously taught me, it's patience and just taking things one day at a time.

So, once a week for the next four weeks, I will be reporting to follow up appointments....and then once every other week following that for the next six months. At the end of discharge day, I got the results of my first CT scan which showed that I'm still in the clear and that there are no signs of recurrence (something that would be very rare at this early stage). Hopefully, it will last. If I make it to the one year mark, I'll be in a generally safe place...even better if I make it to 5 years with no signs of cancer. However, if I relapse between now and March 20th of next year, there's really nothing left for me....but I feel confident that all will be well. There's nothing I can do now but wait for the next scan. Only time will tell if the transplant worked. Time...something I hope to have much more of. There's gotta be a reason why I've made it this far and defied the odds.

It's Happening

I hardly know where to begin. I'm currently in the middle of a tornado of events, most of which are positive but shocking. I finished my second and most difficult chemo round about 2 weeks ago and did a repeat PET scan just to be sure of the previous results. I got the phone call just last night....the scan shows absolutely no cancer activity whatsoever!! My doctor was so excited for me on the phone and he told me that the transplant team over at Johns Hopkins was so siked to hear the news. They want me to prepare for a transplant set for March 16th!!!

So naturally this morning I got a phone call from the transplant coordinator to discuss what needs to be done. I've already had a dental exam last week which showed no need for any additional work, and once I get the paperwork done on Tuesday (stupid Presidents Day weekend) they will start setting up my appointments for next week!! She told me however, I need to start getting my caregivers organized so that I start getting 24/7 care starting March 7th....which is only a couple weeks away!!

Yup...this has definitely been me since I got the call.

All day I've been scrambling to get in touch with a few people who previously offered their assistance and I have a few days set...but still a lot of empty slots. I need to get 24/7 care for at least the first month of treatment (the second month, my mother is planning on taking unpaid leave to be there for me).

I know it's a lot to ask of my friends but any help is so appreciated!! It's going to be complicated as I'm working with a lot of people's work schedules. It's truly a stressful scramble, but I just need to keep reminding myself I still have time. I just hope it all works out...and I'm sure in the end it will.

I'm also a little on edge since I'm going to have to get another catheter put into my chest on the 9th and I'm already really kinda worried about that. When I had my chemo port put into my chest 2.5 years ago, not only was I completely awake and aware of everything, but it just wasn't a good experience at all; a bit traumatic to be honest. Hopefully, Johns Hopkins will be a little more considerate of my anxiety. I just really don't like the idea of having something else inserted into my chest...ugh. I'm trying to convince my mind that it'll be like Iron Man and his arc reactor. If he can be so chill with that, then I can be ok with this thing in my chest for 60 days.

I really shouldn't be worrying so much though...instead, I should be excited. I beat the odds! I've done what the doctors thought was impossible. I took the risk of chemo and ended up being on top with a chance of a temporary cure. I say temporary because most of the doctors believe that this transplant will only buy me time...possibly long enough until the next best cure comes along. The transplant alone is a major risk with a 1/3 possibility that I may not survive...but I'll take it the chance!! I've been fighting this for almost 3 years now...I'll be glad to finally be free.

PET Prep

I SURVIVED!!!!! 

I've made it over the first hurdle of this ICE chemotherapy. I apologize for not typing as much during that ordeal, but I was not kidding in my last post when I said I was "sleeping the days away". Besides the occasional visits from my friends and family, I was so drugged up on Benadryl and other things that I slept through it entirely. Most of the hospital trip was a blur, and I didn't feel comfortable posting something in that state.

Even the return home was unbearably tiring. The first two days I literally spent in bed. Every part of my body ached, and I had absolutely no energy to do just about anything. Simply going up a flight of stairs was enough to cause my head to spin. The nausea was under control thanks to the two strong anti-nausea meds I was living off of. However, I hear that the next round will be harder, as the chemo naturally builds up over time...and I still have two cycles waiting for me.

Along with the anti-nausea meds, I'm back to giving myself daily injections. Unlike the fertility treatment shots I was on two years ago, these are mainly to keep my white blood cell count up. My immune system is completely shot down with this chemotherapy, and to prevent hospitalization, I need to take a shot every night. Thankfully there isn't any bloating and I haven't experienced any changes in hormones. I also get away with any pain by applying an ice cube to the spot just before the pinch...so I really shouldn't complain...but it's become such a chore.

So here I am recovering from the aches and pains...which is no small feat. To celebrate this moment, my doctor scheduled a PET scan to see how I'm responding to treatment. I am not going to jinx anything on here, but I will say this...I have a very good feeling about the upcoming results. I can feel it...

Then this morning while doing the necessary labs for the scan tomorrow, I realized...I never did explain what the PET scan process is to you all who have never had one. Let me enlighten you...it's quite the process. A PET scan is a positron emission tomography which uses nuclear medicine to capture full body images. As I said I went to do "necessary labs" this morning...necessary as in a pregnancy test. You can't undergo something with THAT much radiation if you have any chance of being pregnant. Even though I'm on a shot that makes pregnancy almost impossible, I still have to be tested. Naturally, my social life (or lack of one) has become an ongoing joke between me and the radiologists.

Tomorrow I have to report to the radiology department after fasting all morning and afternoon (my appointment is late in the day...yay...). Once I'm called back and vitals are taken, I'm led to a tiny room with a reclining chair. The technician then proceeds to prick my finger to test my blood sugar. If it's too high then I can't proceed with the scan, but that has never happened (and hopefully never will). Then they set up a temporary IV and leave the room to get the radioactive dye used for the scan. The dye comes in a metal casing...almost like it's top secret or something. I always joke that it's going to give me super powers for the day...because you know they've heard that joke a million times. Haha!

Once it's injected, the technician reclines my chair, turns off the lights, and instructs me to take an hour nap. I'm not allowed to talk, read, listen to music, etc...nothing stimulating so the dye can circulate in my body without any issue. Once the hour is up I'm told to use the restroom and then report to the CT machine. The scan itself takes about 30 minutes to do and they capture images from the head down. The images not only show what your organs look like but how they are functioning, and any cancerous activity is easier to see under this scan. Unfortunately, the scan cannot be repeated too frequently due to the amount of radiation involved...so it may be another month until I can get it again. Hopefully, by that time, I might be looking forward to proceeding with a transplant come March! You never know, right?

So that's the gist of what will happen tomorrow. I have a very good feeling about this scan, and I'm SUPER eager to see what the results are. Despite how toxic and harsh this chemo is, something about it just feels right...like it's meant to be. I just hope I'm right and that I've made the right decision. I'll let you know in the next few days when the results are in.

So I Almost Died...

This week started off as planned...and then started going south...and then into oblivion. I went to the gynecologist for my first out of three Lupron shots (thankfully I get it only once every 3 months). This is the hormonal therapy I will be taking leading up to the NIH trial that I wasn't ready for last month. I have already had this shot before to try and salvage any fertility during my first chemo treatment, so I already knew what to expect. It's an intramuscular shot that they normally give you in the butt. This time they tried to go up a little higher close to the side of my hip so my butt wouldn't hurt every time I had to sit down and drive somewhere. Still, about an hour after receiving the shot, my hip area was incredibly sore. I mean it's a BIG shot...no joke.

                                                   "I got shot in the buttocks"
Then to top off the pain in my hip, I've been dealing with increasing muscular lower back pains from God only knows what I did...something obviously stupid. Anyway this pain has been keeping me up at night and only happens when I'm sitting, resting, and sleeping. I've dealt with this EXACT same pain before when I had shoveled too much snow last year after giant blizzard, and when that happened the doctor gave me some pain meds and told me I had to wait it off. So after I did some routine bloodwork, I went upstairs to urgent care expecting the same thing. This time however I got a new person and she looked at my chart and told me that because she noticed I had cancer, she wanted to "rule things out". She wanted to have me do more bloodwork and a CT scan...it was 9:30pm. I was like OH HELL NO!!

I already felt uncomfortable doing any kind of scan, as I had already underwent a CT, PET, and MRI all in one week at NIH. That's A TON of radiation and I didn't have my doctors ok for this. I told her this and she kept insisting that she knew better and that it was the only way I'd get relief. Considering I was tired and had been waiting for her from 7pm to 9:30pm, I just wanted to get out of there. So she gave me minor pain meds (which didn't quite work all that well) and I bolted out of there.

Two days later I was scheduled for my first round of my 4th chemo treatment. The purpose of this chemo is to try to reduce any progression and any current tumors between now and when my clinical trial starts up. I had been given the choice of either chemo or radiation, and I chose this due to the fact that I'm not crazy about the idea of radiation as it's actually one of my phobias. I was also told that this chemo regimen was very similar to the first chemo I did (the only one to have the biggest response back in 2015) and was less toxic compared to it. So I figured it was definitely worth the shot and if after two rounds of it there was no improvement, I could switch to radiation where I'm pretty much guaranteed a chance at a temporary remission. So I went into this treatment not thinking much of it. Just get in and out...(granted the whole ordeal was supposed to take 3.5 hours).

After getting hooked up through my chemo port, and pre-meds were taken, they got the ball rolling. First drug took about an hour. No big deal as I spent that time watching a little bit of the news and doing connect the dots. Second drug was practically a breeze as it lasted only 10 minutes....boy do I wish all chemo treatments were that fast. Then all of a sudden I see them hooking me up to this big reddish-orange bag of what looked like freakin Fruit Punch!!

I was rather amused at it and watched as it took FOREVER for it to slowly go through the tubes up to my port. I actually was encouraging it as if watching a race since it was the last drug in the sequence and then I was homebound.

However what seemed like the fun drug turned out to be the drug from hell. Not even 5 minutes passed when all of a sudden my connect the dots were making more little dots all over the page. They were multiplying and I felt flushed. I looked up and started seeing stars and immediately pressed the help button and with my last full breath screamed for my nurse in desperation. This had happened before while taking a previous treatment...twice. So I knew the drill. Just keep trying to breathe, focus on the nurses as they took me off the drug and hook me up to an oxygen tank, and most importantly try not to panic. But then I started losing function of my body...my blood pressure jumped to the high 150's, my oxygen dropped to the mid 50's, my head started to want to pass out and everything was spinning...I wasn't getting enough air and I'm surprised I stayed conscious at all.

Then one of the nurses said "oh my god, look at her arms!"...and with all of my will power I managed to get my head up long enough to see it...the most disturbing skin mutation I had ever seen had appeared. My hands and arms started to form a splotchy bright purple rash under my top layer of skin. Apparently it was also on my face. Now if it had been some cool looking X-men superhero mutation I might be ok with it. Something like this:

                                                     Or like this:

But instead it looked like this but PURPLE all over my arms and both sides of my hands:

Almost immediately panic set in. The first thought was, "oh my god...I'm dying". Then when I started to recover from the oxygen mask my next thought was "oh my god...this isn't going away...it's permanent!". Just then the nurse took hold of my arm and was telling me that it was starting to fade away. In my hysterics, I couldn't see it for myself and I didn't believe her at first. It wasn't until about 5 minutes of my mixed crying and deep breathing that I noticed it was starting to slowly disappear. Then the thought processed changed to "I need this to work. I don't want to do radiation. Please tell me there is something that can be done." One of the doctors on site told me he got in touch with my oncologist, who was at a different clinic at the moment, and said he was going to give me a call back. He also said that if I didn't hear from him, then to call him back after 12:30 pm the next day. I still haven't heard from him and by the time I post this I'll be picking up the phone to call him.

I'm desperately hoping to hear that something can be done. I don't want to hear the word radiation. Not only that, I'm still incredibly traumatized by what happened and keep looking at my hands and arms every other hour to make sure they are the translucent pale skin they always look...bleh...stupid Irish genetics. Thankfully the only reaction I've been battling is fatigue...I basically spent the whole day sleeping yesterday when I got home. I don't know what today has in store for me in terms of plans or symptoms...but I'm going to try to remain as upbeat as possible. Wish me luck on my phone call...

UPDATE!!! My doctor told me that I will be continuing chemo treatment just not with the third drug. So I've still got a chance that it could work without having to kill myself or undergoing radiation. Yay. lol!! Your amazing.

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....