The Calm Before The Storm

Hey, everyone!! So much has been going on since my last post, and I apologize for not really documenting it this past month. However, I will try to sum up everything as best I can now. I last wrote about the fantastic news that I'm currently in a temporary remission...it still blows my mind that I can even say that. About a week or so after I got my results I received a phone call from Johns Hopkins; they have given the ok to proceed with a donor bone marrow transplant.

I was completely thrilled until the transplant coordinator told me they wanted to get me started on the process ASAP. She scheduled about 8 different tests and scans to do in a matter of two days and to start the bone marrow transplant the following week. I was like WAIT WAIT WAIT WAIT WAIT!!!!!!

It was at that moment that I realized I was not mentally prepared for this. I was still getting over the fact that I wouldn't need to proceed with a clinical trial; that I had to wrap my head around the idea of being in a hospital on the brink of death for at least 4 months.

I asked the coordinator what the rush was, considering I hadn't anticipated starting transplant until October. She went on to say that my oncologist and transplant doctor were insistent that it was urgent. When I asked why I hadn't heard from either of them directly, she said my transplant doctor was on vacation and I would be hearing from my oncologist about further instructions. I then ended the call and told myself I wouldn't worry about it until I heard from one of my doctors directly.

Needless to say in 24 hours, I heard from my doctor but there was no sense of urgency in what he was telling me. In fact, all he said was "Johns Hopkins wants you to start soon...but it's not a life or death situation if you wanted to wait. You can continue the current chemo treatment until you are ready." I took a sigh of relief. A few days later I received an email from the transplant doctor at Johns Hopkins giving me the ok for October. I was relieved to hear this, but boy was I still upset at the transplant coordinator for causing unnecessary panic.

However as each day pass, the more I became anxious about the upcoming ordeal. I started to look into the details...and they aren't pretty. The transplant coordinator told me that at the start of the transplant process will be scans and tests to make sure I'm healthy enough to go into it. My sister, who is my donor, will also be going through these tests. When these are finished, I go inpatient and get a catheter put into my chest (definitely not looking forward to this after the experience I had with my chemo port). Then I begin 5 days of extreme chemotherapy (10x harder than what I've been on) followed by a day of full body radiation therapy. Out of everything that I will be going through, this will be the most challenging for me. Everyone always tells me "oh radiation doesn't feel like anything...it's not a big deal" but for me...it's a phobia. I've been scared of any amount of radiation ever since I learned about the after-effects of WWII's Hiroshima. Now I know what you're thinking..."Maddie, please, you aren't going to be exposed to THAT much radiation and treatment lasts about 15 minutes."....that's not it....it's the fact that other cancers (breast cancer especially) run in my family and this will put me at an even higher risk to develop that later on. The last thing I want is to expose my body to potentially enduring this nightmare all over again. But I guess, that's the payment we have to make in order to gain a few more years of life, right? It's definitely a mental dilemma for me.

Anyway, the day after radiation is when my sister comes in to donate her bone marrow cells and I receive them. Then the torturous wait begins. For about 2 weeks I will be monitored to make sure I don't have any serious adverse reactions, which is always a major risk with donor cell transplants. If all goes well, I will go into the outpatient housing across the street from the hospital for the remainder of my recovery period which can range anywhere from 3 to 6 months. I will be fighting on all fronts...physically, mentally, and emotionally I will be drained. I will also be restricted to how many visitors I can get. It's going to be tough...and with all these factors flooding my thoughts lately, I need to learn to accept it and prepare with the time I've been given between now and October.

Before I was diagnosed with cancer, I had been saving up to take a trip to see London and around Scotland (where some of my ancestors are from). I've also been dying to see my family again in France. Of course, everything was put on the back burner when I couldn't afford that and dealing with cancer. With the many challenges I've endured (barely making it out with my life at some points), and the risky path that lies ahead, my friend Katie decided to make a GoFundMe to grant me this wish. So with the remainder of the time I have left, I will be traveling to the UK and France for the month of September. I am so incredibly grateful to all who donated and cannot express how much I need this going forward. When I am in the hospital, I will have something to look back on....the medical miracles that have happened this year and the wishes granted to travel and see my family.

I will not be able to write while I'm away, but I will write all about it when I return (I'll take lots of pictures I promise). I will also have access to my blog while I'm in the hospital and I can guarantee that I will be writing A LOT then. For now, I'll leave you with this and see you in October!!!

A Metabolic Miracle

Yesterday was truly an eventful day. To start off, I woke up to the sound of La Marseillaise playing on the television. It was Bastille Day, so I dressed head to toe in my blue, white, and red. My nails still had the lingering colors from the 4th of July. I was completely overwhelmed with fatigue, despite sleeping for several hours, but nothing would stop me from getting out of the house to meet with my friend Tara. I had reason to party!

On my way over to meet up with her, I got stuck in rush hour traffic, literally moving at 2 mph. Listening to the soundtrack of Midnight in Paris, I started tapping my fingers on the steering wheel. A pang started increasing on my middle finger where I was pricked before my PET scan. The stupid nurse at the time tested the very center of my finger which was now bruising and super sensitive. Suddenly, I started to wonder if the results had come in yet. They say no news is good news, but the anxiety I felt was increasing. In the standstill traffic, I eagerly commanded Siri to call my oncologist's office on speaker phone.

After a few rings I got a hold of a nurse and after explaining to her my reason for calling, she asked for my medical record number. As I started reciting my memorized label I heard a click and silence on the other end. She hung up on me. 

Thinking she might have accidentally pressed a button, I commanded Siri again to redial. A few more rings and a different nurse answered the phone. Before I could explain what happened she told me there was another patient ahead of me and to hold. Hesitantly I said ok...my mistake. As I sat there in the sluggish traffic with the agonizing elevator music playing on a loop, I started to notice a GIANT rain cloud creeping over me. I literally sat like this for 30 minutes before anyone bothered to pick up my line...only to be told that my oncologist wasn't in his office today and they already left a message. At that moment the downpour hit.

By the time traffic started moving again the thunderstorm started to calm down. When I finally met up with my friend, all that was left from the storm was the muggy humidity. Despite the heat, we went out for lunch and toured a local library for books...I had to get some more material and inspiration for a book I'm trying to write. After I dropped her off at her house and was about to head home, I decided that since it was the 14th of July, I would treat myself to a crepe at a little french restaurant...as is tradition in my family.

It was around 7 pm when I started heading home when, in the middle of Edith Piaf singing in the car, my phone went off. It was a call from my oncologist, Dr. Oh. There wasn't anywhere to pull over and talk, so I had to hurry and find a parking lot to listen to his voicemail...it couldn't possibly wait until I got home. I came up to a building that used to be my old pre-school, pulled into a parking space, and frantically reached for my phone. Dr. Oh's meek voice excitedly came over the car speakers...

"Congratulations Miss Madeleine! The PET scan results are back and although the lymph nodes are still there and haven't changed much, there is no longer any cancerous activity. It's a metabolical success!"

I wanted to scream with excitement! I never thought I would hear this. It's a temporary remission but remission nonetheless!
"I will contact Dr. Meade at Johns Hopkins to see what to do to begin the transplant process and will be in touch with you when I hear from him. Enjoy your weekend!"

I was so excited that for the remainder of the ride home I had the windows rolled down and screamed "I'M CANCER FREE!!!" every other mile.

It was truly the best Bastille Day I've ever celebrated. Not only do I get to look towards a possible finish line, but now I get to bypass the clinical trial altogether. Admittedly, I'm a little disappointed since I did this stupid hormonal therapy for absolutely no reason. Now the real battle begins. These next two months I will be mentally preparing myself for the battle of a lifetime. I will most likely be jumping straight into my transplant the day after I return from seeing family in France. I will be inpatient in a hospital on my birthday and spending Thanksgiving and Christmas in Baltimore, fighting to stay alive. 

I don't know how many visitors I will be allowed to see (let alone the fact that my friends live far away and are busy). I'm also struggling to find a/some caregiver(s) for the 6 months I will be staying in Baltimore. Neither of my parents can financially afford to take off work for that long amount of time and both my siblings are in school....but I will ultimately cross that bridge when it gets here. For now, I just need to focus on my strength physically and mentally. The finish line is there and I can feel it. I want to move on. Whether it's life or death...I don't even care, as long as I get there. My will to live has been renewed since my last post...so despite the odds, I like my chances.

My Mind Holds The Key

Hey everyone...sorry for the brief hiatus. When I last posted on here I had great news from the PET scan. Nothing has really changed in that regard and I have another PET scan awaiting me this next month. It will be the determining factor on what course of treatments to take place for the rest of the year. If the scan shows that the chemo reaction has been improving, then I might just be able to forgo any clinical trial, possibly add radiation or more chemo to get me to remission quickly, and then jump straight into a transplant. If nothing has changed since April or the cancer has spread, then we focus on a clinical trial in October and do that as many times as it takes to get me to remission followed by the transplant. No matter what happens I will be spending several months in the hospital at some point in time. It's going to be a long uphill battle ahead of me with a lot of uncertainty.

Instead of really celebrating my PET scan results, I found my mind plagued by the thoughts and worries of what is to come and how my odds are beyond scary. My anxiety and depression were starting to take a serious toll on me. When people were smiling and celebrating my news, I tried my best to enjoy it as well, but instead, I found myself distracted looking too far into the future instead of one day at a time. People compliment me on my hair and how it's growing back, but instead of appreciating the compliment I would feel detached and think to myself, "I'm just going to lose it all again during the transplant." I was in a very dark place. Everything became robotic going to chemo, sleeping it off, and waiting for the next appointment. I started to lose interest in activities and found my feelings of isolation worsen when more and more friends started moving away.

Then, out of nowhere, a very good family friend of mine offered to take me on her family vacation to the turquoise waters of the Caribbean. Despite my anxiety about what others might think of this and feelings of not deserving such a blessing, I decided to take a leap of faith and go. Looking back on it, I am so grateful for the wonderful opportunity because I truly believed it saved my sanity. Spending a whole week with fun loving people, no worries, and surrounded by beautiful sites and adventures...I was able to heal. I went horseback riding on the beach, snorkeling in the beautiful waters and sailing for the first time. I even marked off my bucket list relaxing in a hammock by the beach under the stars. It was truly a piece of paradise.

When I returned I had a sense of calm for a few days and still felt like it had all been a dream. But when chemo came around, I was truly dreading every moment. The entire ride to the infusion center felt like I had a giant rain cloud over my head. I wasn't ready to return to this nightmare and needed to find a motivation to get me through. So after a couple weeks of being back, I decided to visit my grandmother in South Carolina and spend some quality time with her during my off week of chemo. While I was there I learned a bit about my family and got to see my Aunt and cousins who also live down there. I even met up with one of my high school friends who went to school down in Charleston and spent an afternoon with her. Not only that, I spent the sunny days of my stay by the beach again.

Since I was little I've always been a fan of the woods and mountains, but ever since this whole cancer situation started 2 years ago, I've found that the beach is the best place to breathe. Something about the sound of the waves and the smell of the salt water...or digging your feet into the sand and soaking in the sun...or walking along the creeping waters for miles listening to music with the waves crashing in the background...it's very therapeutic. One day while I was at the beach, I found myself recalling a quote I read several years ago. "Strength isn't something you have; it's something you find." I was on the quest to find my strength to continue.

For the last two years, my body has been trying to kill me. Physically and mentally it has tried to bring me down and put me in the ground. But for two years I have continued to fight and persevere to stay alive...but what was it that kept me going? One morning I decided to wake up early to see the sunrise on the beach (since I never see the sunrise as I'm normally a night owl).

                                                                                          (A panoramic I took)
So as I looked out at the horizon that morning I found my answer. I keep moving forward because I have the motivation of my friends and family. I also have my ambition to live and to leave a legacy behind. And as I looked at the sky filled with so much color, I recalled how beautiful life is and I have the desire to see more of it, if I can help it. Surviving everything so far has only made me stronger...I can only imagine what I might think this time next year.

So when I returned home the other day, I not only had the motivation to write more again but to continue to fight to stay alive. I just needed to clear my mind, refocus on the now, and to only prepare for what lies ahead. I might still be afraid but I know I don't really have control on the outcome...just that I have to fight to get there. Besides, worrying means you have to suffer twice. I may have to be realistic, but I also have to remain hopeful that I can beat the odds and survive. It's all in the mind. And as Arcade Fire once sang...my body is a cage but my mind holds the key.

It's About Time!

Today I'm rather speechless but in a good way. I woke up still feeling quite unwell from my recent chemo appointment...the usual side effects of nausea, mild cramping, and mouth sores. After hitting the snooze alarm about 50 times, I rolled out of bed, slipped my shoes and coat on, and dropped the pug off at the vet for his scrub down. As soon as I got back, I had the intention to just make a beeline straight for the bed again and snatch some more z's before the day officially began. Before I could drift back into my slumber, I did what every 24 year old would do...checked my phone for any new notifications. Surprisingly I found an email had been sent to me with the title "PET scan results". Usually, I would be up and alert but I was so insanely tired that I just casually opened the message without even thinking twice and expecting to hear the worst.

My eyes glossed over the message. "Dear Maddie. Congratulations---"
                                            Wait a minute...WHAT?!

                                                 Congratulations?!?!

"Your scan shows a marked response to treatment, much better than with any other treatment so far."

I must be dreaming...surely I didn't wake up yet.

"We should continue this treatment until we have feedback on the CAR T-cell project."

                   IS THIS REAL LIFE?!?!?

It's about freakin time I get a PET scan result that shows some form of improvement!!! Only one thing to do at a time like this...PARTY!!!!!!

Finally, a victorious battle in this war against cancer!!

Patience is a Virtue, But Sleep is a Necessity

 I just got back from my 5th chemo appointment for this current treatment, and I figured I'd give you a funny little story and a quick update. So before anyone asks me, I had my PET scan this past Wednesday morning and I'm still waiting for the results...yes, you heard me right. Still waiting.

I normally get a response about the results within 24 hours, but the reason for that is because all of the PET scan results I've gotten in the past have come back with bad news followed by an emergency follow up appointment to discuss what the next option is. However this time...it's Friday evening already and I am still waiting. I have already sent my doctor an email and a voicemail, but I was told today at my chemo appointment that he is doing hospital rounds and might not get back to me until the end of his shift. I was also told that "no news is good news"...which is cool and all, but I'd really like some sort of confirmation...along with a reason to celebrate for once. Haha!

So since I didn't hear anything about a change in my treatment, I went in for chemo at my usual time...bright and early in the morning today. Due to the anxiety of waiting for results, I didn't go to sleep at a decent hour and only got about 5 hours total by the time I woke up. I quite literally rolled out of bed, put a beanie on to cover my horrific grow-out, bedhead, got my things and left. I figured I might just crash and catch up on my sleep after I sign in and get settled. I went straight to the reception and asked if there was anything on my file about my results or any changes in my treatment today. Sadly the receptionist told me that she had no access to scan information but that the nurses might be able to tell me if they came in. She then proceeded to put my wristband on and I took a seat in the waiting room.

Suddenly a woman (let's call her Nan) leaned over and told me about her latest PET scan and how she was starting a new type of chemo for her very aggressive form of breast cancer. She told me how her oncologist was absolutely amazing and that they always get back to her asap. I asked her who it was and she mentioned the name of my previous oncologist...the one who told me that I needed to quit my job and lectured me when I cried after receiving news of my cancer diagnosis at 22. I decided to bite my tongue and not mention this as she seemed thrilled with this oncologist. To each their own, right?

This small talk conversation was ok in my book until she started comparing her cancer to mine. Now I understand why some people do this. It's a failed attempt at empathizing another's situation. They are looking for validation for their own situation as well as comparing the severity of their cancer with others...despite them being completely different problems. I notice that a lot of people try to make it seem like their cancer is more important than someone else's and try to explain how I "should be grateful" that I don't have their specific cancer. Normally I just shrug that kind of talk off, ignore it, or change the subject to something else...but despite my attempts, I seem to have only encouraged this person not only to continue talking about uninteresting topics, but continue talking in general.

A few moments after sitting down, my nurse (let's call her Emmy) showed up at the door to welcome me back to my usual spot in the infusion center. I normally sit all the way at the far corner of the room, because I like to listen to music, read, or occasionally take a nap...and it's the most quiet section of the infusion wing. Immediately, I shot up and bolted for the door....

...as she also signaled Nan to follow. As I was getting my weight and blood pressure checked, I asked Emmy if my scan results came in. Sadly, she told me that she can't see anything on my file until the doctor does and she thinks they haven't come in yet. Usually I would feel a bit discouraged by this, but the only thing on my mind was that I just wanted to lie down in the comfy chair and take a nap. So, I made a bee-line for my usual spot and just as I was unloading my backpack and taking off my jacket, I could hear Nan asking Emmy if she could take the chair next to mine. The first thought going through my head was...

In that moment I knew...I was not going to be getting any sleep for the next couple hours. The only thing separating us was a curtain (like they have in the hospital). Her treatment actually turned out to be shorter than mine...but you also have to take into consideration that a good half of getting chemo is hooking a needle up to your chemo port (a little implant device under your skin on your chest), taking your pre-meds, and waiting for the pharmacy to prepare and distribute your chemo drugs (which they can't do until the previous two steps are done). So despite all my attempts of trying to sleep through it...I had put up with an hour of Nan talking about totally random stuff like her new industrial strength toilet she's getting put in today, her FIVE cats and how she adopted each and every one of them, as well as her life story. I didn't even have an opportunity to chime in, she just kept going on and on...

Within half an hour of her babbling, I learned her age, how many kids she had, where they went to school and what they are doing now, her job, her 5 cats, and she probably mentioned a whole ton more I don't remember. I was in a torturous (yet humorous) stage of sleep limbo where as soon as I would start zoning out and approach the blissful drift of sleep...I would be asked a question like "so how many cats do you have?" or "do you like mexican food?" or "I've traveled all around the world, have you?"....

Again, I normally wouldn't be too upset about holding small talk during treatment...it's a rare thing as most people bring relatives or friends along to socialize with instead of communicating with strangers. It also gets your mind off of how slow time seems to be moving when getting chemo (for some people you are there for practically a whole day). But out of all the days to befriend someone, it was the day I desperately craved sleep. So ultimately I didn't want to shut her down in case future (hopefully more interesting) conversations occurred. However, as time went on, I felt certain that if I listened to one more story complaining about her backyard pool (no joke), I would have ended up like Kahn in Star Trek...

Thankfully, in the end, her chemo sequence literally lasted 10 minutes as opposed to my 1.5 hour long chemo...but before she left I overheard the nurse telling her when she was expected to come in next and what her chemo schedule would be. Of course, with my luck, I found out she has the same days/times scheduled as me.

Despite it all, she seemed nice and I'm sure the reason she wanted to engage in conversation was because she was feeling lonely. I tried my best not to completely ignore her for that reason. And who knows what will happen during the next chemo treatment. All I know is that I've learned my lesson...bring headphones.

Anyway, I posted some funny videos of this chemo adventure on my instagram: https://www.instagram.com/madomelodic/
You can check that out along with my gofundme/MakeAWish (there's a link in the top right corner of my blog). Please share it!!
Leave your comments below and let me know what you think of my chemo adventures with Nan. If you want to see more updates (including my upcoming PET scan results) please subscribe or submit your email address on the right hand side so you get updates when I post!! Thank you everyone! I hope you all have a super awesome Earth Day and I'll post again soon!! Until then!!!

Active April

So this past Friday, I started my second cycle of this chemo regimen. Woohoo!! At the end of this month I get my PET scan and see if it's working. I'm having very good vibes about this treatment (despite the horrific mess that happened on day one) so I'm hopeful that I'll get good results...for once.

But that's not the only thing I've started. Apparently, I've been gaining weight like CRAZY this past month. Now most people think cancer patient=sick person=losing weight....and while that may be the case for some people, especially before they are on treatment...other people tend to gain weight during chemo. This is because of the steroids that are given to you as your pre-meds. For me they are these two little green pills I take and they taste like chalk in my mouth. Thankfully my nurse gives me some apple juice to take them so the taste doesn't linger...bleh!

These little green pills are not just monstrous in gaining weight, but they also seriously mess with my sleeping schedule. The first night after my treatment, my body doesn't know what to do to get to sleep. It's very difficult to describe to someone who hasn't taken steroids before. The best way I can describe it is, my body feels like it just ran a marathon and it's tired...but at the same time my mind is awake and I feel like I have a huge rush of adrenaline that I can't bring myself to a state of calm long enough to fall asleep. I've never really had coffee before, but I would assume this is what it feels like to consume 3 cups of coffee just before bed after being awake for hours.

In addition to this, I found out another contribution to weight gain is that my last treatment, the immunotherapy I did this past winter, caused my thyroid to freak out and now it's under-working. Originally my doctor thought it might bounce back, but after doing more bloodwork, it's been confirmed that I have hypothyroidism, which if not treated can cause fatigue and weight gain. DOUBLE WHAMMY!

So facing this new month of April, I've decided to take some action towards that. Even though chemo is quite a bother, I've come up with an "Active April" workout routine for the entire month as well as taking daily medication for my thyroid. Hopefully by doing this, I'll see some improvement and get back to where I was originally. This month is definitely going to be a busy and challenging one, but at the same time I feel confident about it. Just gotta take one day at a time. Eventually...I'll get there...to that finish line.

Click here: https://www.youtube.com/watch?v=hUgmp2STrNg

GoFundMe: https://www.gofundme.com/maddies-travel-fund