Acceptance Does Not Mean Defeat

Yesterday I went to what may be my last chemo for a while. About three days ago I was getting ready to go to bed and noticed that my collarbone felt somewhat strained...not hurting but like something was pulling on it. I ran my fingers down my neck to the location only to find fear and disappointment. One collarbone seemed raised like there was a mound sitting atop of it. At first, I thought I must be imagining it as it didn't feel like the usual marble lumps that I've had in the past, but as the fear settled in I could tell something wasn't right.

My first instinct was to try to rationalize it by saying I didn't know if it was something leftover from last month's growth and it's slowly fading away. But wouldn't I have felt it then? I'm not sure. All I know is that anything I feel at this point, with the PET scan just around the corner, is not supposed to be there. At chemo, I had my nurse feel it and she confirmed something was definitely there. We continued chemo as usual but I sense it will be my last. My oncologist was very clear the last time I spoke with him that if I'm not in remission by the time this PET scan is supposed to happen, then transplant is no longer an option. My body is rejecting chemo all together which leaves me no other option but a clinical trial which is still in its early phase with little odds and few statistics. Now I know I'm not supposed to pay attention to statistics, but the last time NIH (the facility doing the trial) gave me an option (immunotherapy) it had absolutely no effect on me. Why should this option be any different? People have actually died from this clinical trial and it's still very risky.

I sent my oncologist a desperate email 2 days ago with my concerns and begged him to see if there were any other viable options that could give me the same reaction as this past chemo and can still make transplant a possibility...but I am worried that this email will just return with a giant no. I'm still waiting to hear back from him. In the meantime, I've already taken the first steps towards this clinical trial and set up another appointment to resume the hormonal therapy that I stopped back in the spring when I saw good results from the chemo. I was really hoping to avoid going back on it since I gained 30 unwanted pounds alone from it.

Yesterday after chemo my strength collapsed and I broke down very hard from it all. I feel like this is all my fault. I know my doctor is going to tell me I should never have gone travelling to see my family because then this may have been avoided. I could be recovering from a transplant right now instead and looking towards at least a temporary remission. But instead, I didn't and these are the consequences I have to face. I still don't regret the decision I made because mentally it put me in a better place and I needed to see my family who have had my back through all this overseas. I needed it...but was it worth the risk? I don't know anymore. I feel like I just threw my life away and I didn't mean to.

That being said, although I accept the consequences of my actions, it doesn't mean I'm defeated. If I must abandon the transplant, then I will use whatever remaining power and strength I have towards this clinical trial. I have no idea if it will work or if I will survive it...but I won't go down without a fight. I want life. I want to move on. I want to finish school. I want to have a family of my own someday (which is something I've already fought against cancer through fertility treatment). I will not throw my hands up. The anticipated news still stings and God knows I've cried buckets since yesterday. I know there are going to be people siding with the doctor saying "this is what you get" and I respect it. But to those who still support me, I embrace and love you all.This fight doesn't end here and whatever happens, I will never stop until all of this is over...whether it's my last breath or a cancer-free life.

When I was in France visiting the Pantheon, I came across a statue with the engraving "Vivre libre ou mourir"...live free or die. I was so empowered by this and it's something I intend to go forward with this in my head.

Sick and Tired of Being Sick and Tired

I must apologize for the brief break I needed to take from my blog. After receiving the news last month about my transplant being postponed indefinitely (or until I get back into remission), I had trouble accepting the setback and needed to rekindle my flame of strength going forward. The first round of chemo since I came back from Europe was rough seeing as I wasn't mentally prepared for it. Not only was it mentally draining, but physically it made me very weak and for my first off-chemo week I became very sick with a nasty cold.

By the time I started feeling somewhat better, I went in for my second round of chemo. This round wasn't too bad...mainly because I celebrated my 25th birthday (which I wasn't originally planning on doing at home) and had the perfect distraction of decorating the house for Halloween...even though we hardly got any trick-or-treaters. The much-needed distraction started to pick up my spirits, and so I decided to call my oncologist to set up the "Take Two" PET-scan. However, the response was not what I was anticipating at all.

My oncologist started asking me the usual questions..."How are you feeling?"...."Have you noticed any new lumps?"...etc. I told him that everything was the same as usual and that nothing new had shown up. Besides the little hiccup of a cold and the usual fatigue, I felt ready to take on the PET scan and get the show on the road. Then after a brief pause on the phone, he said, "I think it would be best if we proceed with one more round of chemotherapy."

I wanted to throw the cell phone across the room. He explained that right now he's very optimistic about how I'm responding to the chemotherapy but that Johns Hopkins is very uncertain about moving forward, in fear that I am becoming immune to the treatment. He thinks that if I were to proceed with the PET scan now, it wouldn't be convincing enough to sway them otherwise. So he suggested that I do one more round (another 2 treatments of chemotherapy) and then set the PET scan for the 28th of November. 

Knowing and trusting my oncologist 100%, I agreed to proceed this way even at the risk of weakening my resolve. So instead of preparing for a scan this week, I'm stuck at home once again recovering from the fatigue plus the additional side effects from the flu shot I got at the same time as chemo this past Friday.

I hate feeling bored and useless. I hate this constant lingering around and waiting for a finish line that's only pushed back further and further away. I have no regrets, but the circumstances are not ideal. I'm incredibly grateful for the support system I have between family and friends, but I feel like I'm missing something. Once again I feel like I'm trapped inside a glass box watching my friends move forward to bigger and greater things...jobs, weddings, families, etc...and I'm just stuck. With the lack of energy, I'm not exactly able to go back to work. Going back to school would be very risky...practically impossible if I somehow go into transplant at the end of the year. So all I can do is wait.

If there's one thing I've definitely learned these last few days...it's that I'm sick and tired of being sick and tired. So I've decided to focus on the little victories of every day. I've been studying and perfecting my French. I've even resorted to taking free (non-credit) online courses provided by Yale to prepare for the day I (hopefully) do go back to finish school. I try to maintain my strength by doing small exercise routines every day. I'm trying to read more, and I'm catching up on missed movies and shows. Whenever I have the strength, I try to go out and do something productive...whether it's going grocery shopping or hanging out with a friend. They are small goals but I'll do whatever I can to pass the time. It's the only way to feel close to normal.

"Life doesn't discriminate between the sinners and the saints; it takes and it takes. And we keep living anyway; we rise and we fall and we break and we make our mistakes. And if there's a reason I'm still alive when so many have died then I'm willing to wait for it." 

                                                ---"Wait For It" by Lin-Manuel Miranda

I Was Prepared

Today's post is going to be a short one as I'm still really upset by this recent bit of news. Friday, my oncologist scheduled me for a last minute PET scan to see if I was still ready to go into transplant in a week. I just got the results back today. Apparently, there was some small amount of growth that occurred during my travels. It's small but enough for my transplant doctor to deem it unsafe to go through with transplant just yet. So my oncologist suggests doing two more rounds of chemotherapy (6 weeks) and trying another PET scan after that. If I respond to treatment, I will see if a transplant is still an option late November. If for some reason I don't respond and my body has once again become immune to treatment, then I will have one last option which is the clinical trial that I was looking into at the beginning of the year.

I'm very distressed and upset with this. I have no regrets about traveling because it put me in the right frame of mind going into a transplant; I needed it mentally. I hadn't seen family in over 10 years. However, I'm upset with this stupid cancer because I was prepared for the next step. I was ready to fight. I was ready. This ruins all my plans. I feel bad because I also started enlisting help from friends and family to be caregivers during the remainder of the year. I was about to start packing. I knew what was going to happen and was ready. But after missing only one treatment, everything is put on hold...again.

I will keep writing here...but I think I need time to process this bit of horrible news.

Just Around The Corner

Hey everyone!! I'm back from my travels. Needless to say, it was much needed!! Not only did I get to see my family in France, but I also got to see the sites in Scotland that I had been dying to see for years now. I came back October 1st and although I was sad to return home, I landed at the airport with a confident and ready mind.

The first 24 hours were a bit shaky, I'll admit. I didn't adjust well to jetlag, and I had to postpone my chemo treatment a few days allowing me to recuperate. I also woke up the first morning to another US tragedy, the Las Vegas shooting...which didn't help my emotional composure. It was a rather horrible "welcome home". However, by the time Thursday came around, I was feeling better and took my first pre-transplant steps. I completed (hopefully) my last chemo treatment, and immediately following that, I buzzed off what little hair growth I had accumulated over the last few months. Surprisingly, I actually liked seeing my hair short again. I think it's simply a relief that there's one less thing for me to worry about.

Then later that night, I got a call from my oncologist. He told me that he had managed to schedule me in for a last minute PET scan for the following evening to check and make sure there had been no growth during my travels...though he seems pretty confident that all will be well. I was actually excited and couldn't wait to start!

The next morning, just before my scheduled scan, I received another call. This time from the transplant coordinator at Johns Hopkins. I told her that if all goes well with the PET scan that I would be ready to proceed with the transplant. I may still be very worried about what lies ahead, which is normal when facing the unknown, but I'm in a positive state of mind and just want it to be over with. "The sooner the better!" I thought....until the coordinator told me how soon and the slight change of plans.

She told me that she already has a transplant date set if everything goes according to plan. October 17th is when I go in to get a catheter put into my chest. This will be the first big challenge for me as the days leading up will be merely preparatory scans, tests, and consultations. The following 5 days after the catheter surgery will be very heavy doses of chemotherapy. I will be losing all of my hair during this time and will be very sick and weak. This doesn't trouble me too much as I'm already used to chemo sickness and hardly have any hair to worry about now. After the 5 days of chemo is the 20-minute full body radiation. This is the scariest part out of the whole ordeal as it is a major phobia of mine and I worry about the long-term effects. However, I have been told it is a very low dose and I will experience hardly any reactions besides fatigue. I will also be pre-medicated with anti-anxiety meds which should help me endure it. So...yay?

The day after radiation is my so-called new "birthday"...transplant day.

My sister, who will be my donor, will be giving some of her bone marrow cells to me that day. I don't really know what to expect, but it's probably not going to be as big of a deal as people make it out to be. After that is the long recovery and wait period to see if the transplant works.

Initially, I was told that the first month I would be inpatient within the hospital. However, less than two weeks before this scheduled transplant, the coordinator tells me that I will now be outpatient for the entire process. This means that I will be in a separate housing unit across the street from the hospital from the 17th of October until the end of the year. This also means I have to scramble to find last-minute caregivers. Thankfully two angels have stepped up to help me during the month of October. Now I just need to figure out what to do with months November and December. My mother has already offered to cover as much time as she can (especially during the holidays since I don't expect anyone to be free during that time). I have also created a calendar for anyone of my friends/family to volunteer their time to be a caregiver (let me know if you are interested).

With all that being said, I would like to take this moment to thank everyone who donated to my fundraiser; granting me the wish to see my family in France and to see where my family comes from in Scotland. It was an experience I will never forget, and I'm incredibly grateful for it. This trip was a much-needed escape from everything that has happened and the best way for me to approach what will most likely be the riskiest moment of my life. I thank all of you who contributed, from the bottom of my heart! You made me the happiest I have been in a long while.

I would also like to take this time to show my appreciation to you all. I'd like to thank everyone who has supported me these last two years, who have stayed in touch with me or have been reading this little blog of mine to keep up to date. I like to think of this blog as not only an outlet for what I'm experiencing but also as a way to either relate or understand what people dealing with cancer might have to go through. It hasn't been easy...and the hardest part is just around the corner. I promise I will continue to write my experiences while I'm in Baltimore these next few months.

I will most likely be getting my PET scan results in the next few days and will write more as the time to transplant approaches!

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.