Day 1,981 - New Beginnings

 Hello, world...I'm back. 

Since my last post almost 5 years ago, there has been so much that has transpired in the world. We collectively spent two of those years in a global pandemic, political tensions, and a whole boatload of mind-numbing occurrences that would make anyone question whether or not they've entered an alternate universe.

However, during that time, I reached new milestones...chapters in my life that I never thought I'd live to see. I ended up on the Dean's List every semester, received my associate's degree, and graduated with honors in May 2020. I moved out of my childhood home again and transferred to the University of Maryland. I saw the band that inspired me to keep fighting through cancer, My Chemical Romance, get back together and see them perform live in concert, something I never thought in a million years I'd get to do. I saw friends get married, have kids, earn promotions, and travel. I also can say that as of March 20th this year, I made the five-year post-transplant mark. I'm officially in a state of remission. I made it. I survived.

This is cause for celebration, right? Well...

The fact of the matter is that the path to get here was one that contained a great deal of pain and hardship. Since receiving this second lease on life, I had to say goodbye to my pug and cat, who passed away in 2020, one month apart from each other, just after I transferred schools. I had to cope with the passing of good friends, including those within my support group. I even had to lay my father to rest last year. I say all this because the takeaway I had from these past five years is that while looking back it feels like dying was easier and living is harder...life still goes on regardless. It forces us to keep moving forward. So you either keep trucking forward, or you surrender to despair...and I almost did just that.

In 2020, at the very start of the pandemic, I attended my graduation on a virtual platform from my bedroom. Being in an almost constant state of quarantine as I waited for classes to start up again (this time at a new campus), I often found myself sitting alone with my thoughts. This made it all too easy to unlock the door in my mind that kept back the flood of cancer trauma. The problem is that once opened, it gets harder to close it back up without repercussions. Juggling the emotions with "normal" everyday life as an essential employee was like trying to scoop up the flood in a bucket, but there's only so much it can carry at a time.

Foolishly, I kept insisting to my peers who saw and pointed out the danger accumulating that I was fine. I knew very well that I wasn't, but I figured if I just distract myself with work or studies, then I'll be fine. So, while everyone was mandated to wear a mask in public, I was wearing two; one to prevent the spread of covid and the other to conceal the pain that worsened day by day. Eventually, there were close calls where I felt like I was drowning, and I was so tempted to just give up. Thankfully, I had a strong support system of friends who willingly pulled me out of these moments of distress. By the end of 2020, I finally took the initiative to seek help and reached out to a therapist, who has helped me confront the damages of this flood in a safe manner. In the end, I wouldn't be here if it wasn't for everyone who stood by my side that year.

I bring this all up because I know what it's like to put on a brave face and pretend like everything is fine, only to suffer in silence when you're alone. I know what it's like to support and comfort everyone around you but pay little attention to your own needs and desires. I recognize just how important mental health is for not just those in active treatment but also those who are in remission. Whether your cancer struggle lasted 6 months or 3 years...it's still a moment in your life when the world gets flipped upside down. To not acknowledge the pain there and put off the necessary healing process, it can be just as lethal as the silent buildup of cancer cells taking over.

Fast forward to today, I gave an interview on my own cancer story when I realized just how impactful my story can be for others. I underwent things most cancer patients never have to face. I endured 3 years of various treatments and a risky bone marrow transplant. The knowledge that I've gained and the experiences I encountered might be worth the pain if it can benefit someone who is currently looking for a lifeline. I've noticed many young adult survivors try to give back to the cancer community by actively pursuing a career in the medical field. Others have also held fundraisers to benefit the advancement of treatment, while some advocate and promote legislation that will allow others to receive life-saving care. However, I know I don't need to be in the spotlight to make a difference. That is why I decided to revive this blog I started back in 2015 in the hopes that maybe it might reach at least one lonely soul and encourage them not to give up. I know when I was in the midst of my cancer ordeal, I wish I had found a kind of hope that I could relate with. I wish I could have heard from more young adult survivors who stood up against the near impossible odds and actually make it. I wish I could have been able to reach out and ask for advice when it came to issues that only young adult cancer patients face, like fertility, fashion, and dating. I want to try to be that lifeline for someone else.

So here marks the start of a new chapter. 

My name is Maddie. I'm 30 years old. I'm a full-time student and a full-time accountant. And I'm a cancer survivor warrior. 

Day 40 - Head Pains

Hey everyone...this is going to be a short post. For the past couple of days I've been dealing with major headaches from my medication, and I haven't really been doing a whole lot besides sleeping or staying in the bedroom with lights turned off...

In all seriousness though, the pain is so bad I can barely focus on a whole lot, and I'm currently on a cocktail of oxycodone, regular strength Tylenol (which never does much for me), Ativan, and heat compresses to my head and neck to try to manage. I'm almost positive the headaches would go away if I took an Advil, but it's a bleeding risk and I'm not allowed to...which just makes matters difficult in the meantime.

However, today marks 40 days since transplant day...meaning I only have a mandatory 20 days remaining here in Baltimore. If all stays the same and I just hold out this headache situation for 20 days, I get to go home!!! I'm past the halfway point now! Hopefully, my blood counts continue to get better between now and discharge day so I can write more. For now...I need to avoid looking at the computer screen and continue to sleep it off.

Day 27 - An Evil Horse

Amazing what a little extra sleep can do to a person. All my life I've never been a morning person, but for one month I gave up my late nights and woke up at the crack of dawn to take giant pills on an empty stomach and walk (or more recently been wheeled over) across the street to my daily 8:30am appointments. This made me not only very cranky but extremely tired. Fatigue was already killing me and to have to force my body to do something it was not ready to do was absolute torture.

Thankfully it all came to an end when my mom took over as caregiver this past week. Since there was no more turnover of caregivers during my appointment time, I was able to put off my appointment until around noon...and thank God I did. I've never felt so much more awake and energized!! It was so bad that I actually shocked my nurse practitioner when I walked in the other day with a smile (first one she's seen since transplant day). Despite my body still feeling quite fatigued, I felt like I could take on anything.

I also started to see my blood counts slowly but surely begin to climb, which is a very good indicator that the transplant has taken and grafting has begun. My sister's cells have begun attaching themselves to my bone marrow and have started setting up shop to create more cells to take over as the dominant immune system and kill the cancer. Since this happened I've stopped needing the daily shots, stopped taking some pills, but started adding many more...fun.

I also had the worst ever pain to hit me at 4am a few mornings ago. I remember turning over in my sleep and then BAM!

I woke up to the most god awful pain twisting in my lower leg. Strained in agony, my mom came over to try to smooth out the cramp that was burning. It suddenly dawned on me...I was experiencing my first ever Charley Horse. I had been fortunate to go through my life without experiencing this pain, but due to certain medications I'm on and the fact that my potassium levels were a slight bit higher than usual and magnesium levels a bit low (also thanks to my meds...), I was susceptible to the agony of this crushing moment. Thankfully the pain subsided quickly and the soreness went away after a couple days...still...that was THE WORST.

I've also acquired new, more interesting side effects such as tingling sensations in my fingertips when touching cold or warm objects. It's the weirdest feeling, but neuropathy is quite common with the recent chemo that I was on. I've been told it will go away on its own in the next couple months...so I guess I have to get used to that.

Finally, I got the best news when I went to my appointment today...I'M GETTING DAYS OFF!!!!

Since my counts are now on the rise, I will be getting Wednesdays off!! You know what that means?!? MORE SLEEP!!!!!

But in all seriousness, this is a major improvement and one I'm definitely going to highlight as a stepping stone to recovery. I'm hoping that when all this is over that I can go back to school (hopefully by the end of the summer) and possibly visit my grandmother and recuperate by the beach for a little while. It seems to be calling my name and the ocean has always been the best place for me to heal both physically and mentally. One day...one day I'll get there. It's only a matter of time.

Day 14 - I Just Want To Sleep

It's been 10 days since my last post...and I've been struggling with how to follow up on my blog. Part of me feels it's too soon to say anything after the loss of Needa, but another part of me feels like there is never really going to be a right time...so I might as well give it a go. I'm struggling to just come up with the words to simply explain how I'm feeling because I don't feel like myself. Lately, I feel pressured to not let myself be anything but positive and optimistic. Emotionally, I've been rather numb since my last post. I haven't allowed myself to truly grieve and by doing so I wake up every morning trying to convince myself that it actually happened. My friend is gone and there isn't anything I can do to change that. I'm stuck in the acceptance stage of grief and will probably remain there until I come home. Until then, I can't afford to dwell on the issue.

Every day since then has been a serious challenge for me physically as well. My blood counts dropped to almost undetectable levels and my energy is completely gone. Simply putting on a shirt in the morning is enough to make me feel like I ran a mile. It got to the point where I had to accept the fact that I couldn't make the walk across the street and had to take a wheelchair to my appointments for two days. All I want to do is sleep...and I could if it weren't for the early morning appointments or the several different pills I take around the clock. I now live vicariously through the 10 alarm clocks I have set on my phone that tell me when to eat, when to take a pill, and when to sleep. It's insane.

The only joy I really get is seeing my caregivers rotating in and out. With every new face is a new adventure and a closer step to the finish line. I even got a little taste of that today when I went in for my appointment this morning and my blood tests showed a tiny increase in my counts. Despite it being a small victory, I was told that I could stop taking two of the pills I've been taking. What a relief!! Finally, I'm seeing some progress and a good indicator that everything is going as planned!

The only thing I need to look out for now is bone pain from the daily Neupogen shots I'm getting (same ones I had with the ICE chemo earlier this year)...which I have prepared for with a stash of oxycodone; thank God for pain meds! I also have to start keeping an eye out for any signs of GVHD which will most likely be starting at around Day 30-40. I'll probably talk more about that when the time comes. So stay tuned for more updates!!

A Risk Well Taken

About 20 minutes ago I received a phone call...what may be the best phone call I've ever had the pleasure of taking. I immediately stopped what I was doing and answered, despite not knowing who it was. The soft, timid voice of my oncologist was on the other end of the line and asked to speak with me...a sense of urgency was detected. I knew right then and there it was regarding my recent PET scan. He sounded as if he had little time to take the call but I'm so glad he did...because it was the best news I could have hoped for.

"The scan results show an almost complete response, with very little cancer activity detected. This is very surprising as you have only had one treatment and the scan having been done only a week after. I'm moving your next chemo date up to this Monday and I need you to go get your bloodwork done sometime this weekend. I don't even think it's necessary for you to repeat the scan as I'm sure you will be in a remission following one more cycle of this chemo. I will reach out to the transplant team at Johns Hopkins to see if you can get a transplant within the next few weeks. Congratulations!"

I was at a loss for words and only managed to utter a thank you before the conversation ended. I took a minute to process before staggering up the two flights of stairs to tell my dad and sister the news. The transplant is a go!!!! The pains of this chemo and the risk I took were worth it entirely!! I received news that many people thought would never happen. The odds weren't even in my favour and still, I was determined to seek the impossible! And I succeeded!

Needless to say, my faith has been restored through this news, and I'm so proud of myself for making the decision I did. It was all worth it in the end. All of it! Now I have to scramble yet again to find caregivers and rush to get the necessary appointments needed to proceed. I'm potentially looking at a transplant this next month so I have to act fast. But for today...I intend on celebrating the news and letting it sink in...I might just have a new lease on life.

Sleeping The Days Away

Happy New Year everyone! It's been a couple days since I've written in here so I thought I'd give a small update while my eyes are open. I'm fighting so hard just to stay awake to type this. My sleep schedule is so messed up lately and it's mainly due to cancer and this chemo regimen. I'm typing in my hospital bed while staring out the window to the view of rush hour traffic. Every part of my body is screaming for me to go to sleep, and I will...but first I want to let everyone know what's going on.

Two days ago I got the call from my insurance telling me I have the ok to get treatment at a nearby hospital. They reserved a bed for me for Monday morning. Yesterday, my mom dropped me off before heading to work. She wanted to leave early as she would be facing not only traffic but an ice storm. I was in an unusually chipper mood most of the day. I took a tour of the floor I'm staying on and flipped through all the movies they have on demand. I did some connect the dots and a little bit of reading. But most of the day was spent resting.

Night time came along and the first drug was administered as soon as my blood work went through. I took a ton of pre-meds along with some Benadryl which made me super sleepy. I was completely out when a nurse came in very late at night telling me I needed to get an injection. I was so confused partly from the meds but also because I had no recollection that I needed such an injection in my stomach. The nurse told me I could refuse it but I wasn't going to turn down what my doctor said was protocol. I could barely keep my head up but managed to give the ok. Literally, the next thing I know I get a huge pinch in my stomach and I was once again knocked out.

Another haze of confusion happened around 4am when I was told I needed to have blood drawn. I was told they couldn't take blood from my port like they did earlier in the day and that they needed to draw blood from my arm. So I started rolling up my right arm when they said it NEEDED to be my left since I had an IV in my right arm. I kept trying to tell them I had nothing in my arms and that my right arm was the easy access. They kept insisting I get it in my left arm. So instead of fighting it, I decided to roll up my left arm, thinking it might put the matter to rest and me along with it. One more pinch and I was falling back to sleep again.

Next thing I know, I'm woken up again at around 5:30 am to take a pill. This time I had absolutely no recollection of it. The only reason I know this happened was because the nurse told me it happened. So bizarre. All morning and afternoon long I've been trying to catch up on sleep. I'm so sleepy and bored here. The food isn't too bad but my appetite has been really bad these past few weeks. I've also lost 10 pounds in almost 2 weeks.

Well, I'm already starting on my second drug for the day. The next one is a 24-hour drip and if I don't have any reactions then hopefully this chemo will be smooth sailing...hopefully. I think I'm gonna try to sleep some more and type again later when I'm awake enough sound coherent. I'll be in the hospital until either Friday evening or Saturday morning...that is if everything goes well. I'm sure I'll have more to talk about as the days go on. Thank you all for your support and stay tuned for any updates!!

Reflections And Moving Forward

Today is New Years Eve 2017. Today is also a Sunday. And today happens to be the day when my oncologist decided to give me a belated Christmas present...my last chemo start date!!!!

He said that even though the hospital has openings tomorrow, he wants me to prepare to be admitted on the 8th. One reason for this is because the hospital is planning on being super busy tomorrow, and he wants me to have the best monitoring possible, since I have a track record of having adverse reactions to new chemos...like not being able to breathe (which is the scariest thing EVER). It's probably best I have as much help as possible going into this.

Another reason for the one week delay is he has already scheduled my next PET scan for the earliest possible date (January 17th in the late afternoon...fun). He wanted me to have this PET scan shortly after the first cycle of chemo to see how quickly I respond to the chemo (the quicker the better), and also as a start point to compare with a PET scan after my second or third cycle. So as the appointments stand at the moment, I'm looking at being admitted next Monday on the 8th and if all goes well, I'll be discharged on the 10th, followed by 2-3 weeks off before I go in again for the second cycle.

In a way I'm a little pleased that I have a week to prepare myself, as my preparation is mainly buzzing my hair super short again, since I've been told I will most definitely be losing my hair immediately after starting this chemo. I plan to buzz it Wednesday, but I don't even really care about the hair loss factor anymore. The only priority I have with this treatment is that it works. It's a long shot but I just have a good feeling about this. I just hope I'm right. And if all goes well, I can proceed to transplant immediately afterwards. This new year is the beginning of the end.

Looking back on this past year is honestly one I'm very proud of. Despite getting the worst news at the beginning of the year, thinking I had run out of options, a miracle happened. My body proved that it can still respond to chemo (let alone a chemo that was only supposed to keep me stable, nothing more). I also felt the closest I was to being normal. The day after I received the horrible news in January, I marched with millions of women around the world for The Women's March. I made many new friends this year. I took non-credit courses, because I missed being away from school and wanted to learn more for the sake of learning. I also travelled EXTENSIVELY...the Caribbean, UK, Europe...all because of the kindness and love of others. Dreams came true when I was able to see my family in France after over 10 years. And even though I came back from my travels to once again bad news, I found both my faith and hope grow. This was truly the year I LIVED...and I wouldn't change anything about it. All I can do is move forward to whatever the future has in store. I feel ready and charged to take on this chemo and am whole-heartedly praying for a transplant in my future. So here's to 2017 and may the new year bring us hope and joy!! Happy New Year!!!

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