I Saw It Coming But It Still Hurt

Well, ladies and gentlemen, this is the update that I could have easily predicted would happen. After waiting a horrific week of mentally preparing myself for either the transplant or the clinical trial, I finally got the call from my oncologist with the results of my latest PET scan. As I had previously suspected, there was a small progression that occurred during the last two months. This means transplant is no longer on the table and once again my only remaining option is a clinical trial at NIH. At first, hearing the news was quite the shock and a complete let down of what I had been hoping for since returning from my trip. The thoughts and fears from the beginning of the year resurfaced and the very real fears of possibly dying from this clinical trial were enough to render me numb to any comfort anyone could give.

My doctor still remains optimistic going forward into a clinical trial. He stressed that there have already been good results coming from the CAR T-cell project in other countries and even in the US they have been successful using this technique with other cancers. However, the risks are still very real including neurological problems, cytokine release syndrome (which results in very high fevers and possible death), and it would mean I'd be monitored like a lab rat for the rest of my life essentially.

I wish having cancer was this cool...lol!

There is also the slight possibility that I may not even be eligible yet for the trial as it was a very small progression, and my estrogen levels may not be where they need to be yet since I only just restarted the hormonal therapy. However, I should be hearing from NIH at some point by Thursday to set up a consultation appointment to discuss what the general timeline looks like. If all goes well, I could be starting the trial by the start of January...which means I'll probably be doing testing (including my third bone marrow biopsy) over the holidays...yay. My doctor has already decided to take me off the current chemotherapy I was on since I need to be off any treatment for about 3 weeks before starting a clinical trial. This could result in a major progression of my cancer...which I'm seriously not thrilled about.

After I called to inform my parents of the news I decided to shut my phone off and go see a movie. I needed to focus on something that was not cancer-related. After that, I found myself just roaming around without a thought going through my mind. I found I just didn't care or have the motivation to do just about anything. I also just needed to be alone...and I was ok with it.

This morning, however, I find myself picking up the pieces slowly and trying to absorb the shock that I already sensed was coming. It's not like going into a transplant would have been preferable either...both options have pros and cons and both are extremely risky. So going into this clinical trial I need to rechannel my brain to focus solely on the pros. The first being, a shorter recovery period. The entire process can be done within a month's time. Since it's through NIH, I'll be monitored by the top specialists in the country. I won't have to lose my hair (at least I don't think I will...I could be wrong). Those are just a few to list.

So yeah....not the best update in the world....but I saw it coming. Some people will be like "I told you so" or "It's your own fault for going travelling"...but you know what...if you really knew me, you would know I was in no state of mind to take on ANY risky procedure before going to France. I wanted to spend time with family (especially family I hadn't seen in over 10 years). I needed to get away. I was getting tired of constantly sitting on the sidelines watching life go by and letting cancer dictate what I was supposed to do. So instead I made 2017 my own. I made new friends. I took part in the historic Women's March. I learned more about history and read more books. I travelled both to Europe and to the Caribbean through the help of AMAZING and LOVING friends. I made dreams come true. I learned more about my family and spent time with them. Despite the end result, I was in a temporary remission for a small period of time...something I never thought would happen this year and maybe wouldn't have happened had I chosen not to do chemo over radiation. So yes...the end of the year gave me a disappointment but I honestly wouldn't change a damn thing about it.

Now that I'm in the process of picking myself up again, I can now focus on what I need to do this next month. I'll be posting more updates as I learn more about what is to come and walk you through every moment! Thank you to all who have been by my side since the beginning and who continue to support me through this very trying time. I love you all.

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.

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!!!

Numb

I knew something was wrong when I ran into my chemo nurse, and she gave me a hug and hinted at getting me impossible Hamilton tickets. I had an appointment with my oncologist to discuss the results of my PET scan. I told him I didn't want to hear anything through email or over the phone and would wait until I see him in person. I went into this appointment already expecting the worst and hoping for the best. I just wasn't really prepared to actually hear it being said to me.

Excuse me if I sound very blunt. I'm still very numb and recalling what happened makes me want to burst into tears, but it's an important chapter to this adventure and I figured I'd document it here. So after waiting a good long while, my doc comes in and broke the news as gently as one could. He said the treatment didn't work and we are looking at an incurable cancer. The cancer only progressed and even started attacking my bones. My only option is clinical trials at NIH and there are no statistics. I'm in a grey area where I don't know what will happen and how long I have anymore.

As I was hearing all these details of how my odds are low and that this treatment is solely to prolong however long my life may be, I started to drift into my infamous daydreams. I thought to myself that this is kind of like going into a duel. You are facing the end of a gun just a few feet away. You don't know if it will hit or miss. You don't know if you will die slowly, instantly, or escape it all completely intact. It's a risk and once the gun is loaded there's really no going back. I've heard the gun click and bracing for the worst and possibly the unknown. You start to wonder how people will take the news or what legacy you leave behind. But you can't show it...you can't be a coward and run away.

That is the best way I can describe to you how I felt and how I'm still taking the news. Apparently I'm a walking contradiction since I look and feel ok despite the increase in cancer. My doc says that I'm in the best shape to be going into this clinical trial so there is still some hope and I'm not giving up. I will fight this to the bitter end.

But facing ones mortality is truly a struggle that I'm still trying to understand. I feel like I haven't done enough. I feel like I have so much more to do. I want to travel and meet people. I want to go back to school and step back on the stage someday. I am worried about my family and how they will cope with this news. I feel like I've made more mistakes than accomplishments. I don't feel like I've had a chance to make an impact and make a difference. I don't want fame but I want to feel like I succeeded in any of my dreams. God only knows I've been praying and praying and yet I'm given all this!! It makes no sense to me. It's not that I fear death but I fear the lack of what I leave behind.

It's just a lot to take in and the wound is still very fresh. As I said, I will keep on fighting...but I need your help. Please...whoever is reading this...say a little prayer. Not just for me but for my family. Say a prayer for those who are also dealing with horrible news like this as I am not the only one suffering. Say a prayer that one day we find a cure and that future families will never have to face something like this.

The Woes of Thanksgiving

Hey everyone...as I stated in my last post, I went a little MIA to just take some time for myself. I don't really know how well I succeeded in that since I'm still overwhelmed with the stress of cancer issues...but I'm gonna take a moment to catch you up. REWIND!!

In my last post I mentioned how I had breathing problems during my first treatment of this new immunotherapy and that the nurses decided that next time to prevent that from happening I would need to take some pre-meds...no problem. Well the next time I went to my appointment, I was all prepared, didn't even seem anxious about the last time...I just wanted to get in and out that day. They hooked me up, and after dealing with staff problems and blood test result problems, they started me on my pre-med followed by my treatment and then BAM!!!

 Last time it was a slow progression of not being able to breathe...this time it was quick and sudden. I felt like I was being strangled from my chest...I would breathe but no air would go into my lungs. I've never had issues with drowning but I guess that's what it feels like. As the nurses rushed over to stop my treatment, give me an emergency shot of steroids, and put an oxygen mask on, I started seeing stars. It was weirdly fascinating actually...my only thought (besides "I can't breathe") was "so this is what the paparazzi look like"...weird I know.

Eventually the nurses got my vitals back to normal and I could breathe easily on my own about 2 minutes later. We started the treatment again and then...no problems. It turns out the reason for my breathing problems was because they were administering it too quickly, and my body wasn't capable of adjusting to the drugs fast enough.
As they say, third times the charm...my next treatment came around and the nurses adjusted my infusion time so I am there for 2 hours COMPLETELY doped up on benadryl and other pre-meds just for precaution. It was smooth sailing and I never stopped breathing...instead I just slept through it. I'm just happy they didn't discontinue this treatment due to my body's reaction. It's not just the breathing problems now...I have MAJOR headaches the day after...so bad I can hardly move without feeling like my head will explode...thankfully that goes away after a day or so.

I've also noticed that my legs are feeling very fatigued due to my being anemic. I can't walk for very long without needing to sit down and take a breather...staircases are the death of me sometimes. Thankfully handicap parking comes in handy for those rough days where I just want to get in and out of the doctors office instead of hiking across an entire parking lot. It also comes in handy on days like Black Friday shopping...which my sister and I experimented on today. We had a lovely spot just waiting by the entrance to the mall, where so many other people were driving in circles to find a spot. Who knew cancer had perks? Haha!

Speaking of Thanksgiving, to be honest, I didn't really look forward to it. After Halloween, it's just been a crazy ride of bad news, unnecessary drama, and raised emotions. But the thing that really set me off was hearing some people complain about petty things the day before Thanksgiving...it really got under my skin this time.

Most people use this day to reflect on what they should be thankful for...but most people don't even realize the enormity of it all. Hell, I don't even need a single holiday every year to know how thankful I am to still be alive! I remind myself everyday and thank God for modern medicines and doctors. A lot of people like me would never make it this far in other countries. So many children go without food, drinkable water, medicine, and even proper education! And to hear people I love complain over something like sweet potatoes or point fingers at others and complain...that just really upsets me. I mean.....

So with Thanksgiving in the past, I urge you all to keep reminding yourselves how lucky you really are. I mean, you are simply lucky to even have internet access and read this silly post!! I'm not saying we all live plentiful lives...I know we all face our own trials and struggles...but there is ALWAYS something to be grateful for. And with that being said, thank you to everyone who has supported me through EVERYTHING...I love you all and I hope you had a happy holiday.

The Week From Hell

Sorry for being a little MIA lately. This past month has been a roller coaster of news about my cancer and what to expect. To sum things up, the treatment that I have been on since May, "Brentuximab", is no longer working. It keeps my disease stable at the moment but my cancer is no longer responsive and has already shown to have had progressions in certain areas of my body. When I told my oncologist that I felt a lump on my collarbone, he immediately went to work and created a list of appointments for me which all happened this past week. So I guess the best way to talk about it is from the beginning...

MONDAY- This was originally supposed to be the easiest day for me. All I had scheduled was a session with my therapist. While I was there though, I decided to kill two birds with one stone and get my bloodwork done (I was originally getting it done Tuesday). Sadly this was a big mistake as I don't normally go to this lab and the usual guy I go to didn't work at this location. There was one person there, he could hardly speak a word of English, and was ABSOLUTELY HORRIBLE when it came to sticking people with needles. I think he got me at a pressure point or something because my arm was badly bruised afterwards and pain was shooting up to my shoulder. He couldn't even wrap my arm up properly with pressure...needless to say, I will never go back there again.

TUESDAY- Since I had the horror show of getting my bloodwork done the day before, I didn't have anything planned...instead I tried to rest my beaten up arm and was on a strict diet for tomorrow's appointment. Then I get a phone call from my oncologist to discuss my upcoming appointments...and in the middle of the conversation he went very serious and said something that has been echoing in my head lately. He said that because I've never been in remission and had no response from two treatments, I'm what you call "Primary Refractory" (very rare) and my chances of ever being in remission are very slim...pretty much at 20%. My odds aren't great but we both decided to keep moving forward and fight for that cure....I didn't exactly sleep well after that phone conversation...

WEDNESDAY- Today was PET scan day. Which meant I had to roll out of bed at around 5:45am, get changed, and head out to the center of Washington DC in the middle of rush hour traffic to get a scan that can take up to 2 hours to complete. Thankfully one of our family friends, Linda, decided to help us out and drive me to and from my appointment which made for an interesting ride. Haha! This way my mom could catch up on sleep since she came home at 1am from work. The scan went well...so much that I actually slept through half of it and got out 15 minutes earlier than expected. Later that day, my mom and I met up with Linda again and had dinner...I had hardly any appetite and what little I was able to eat, sadly didn't stay with me for very long and I had a rather sickly night.

THURSDAY- The day I was dreading the most...I was scheduled to meet with a top specialist from the National Cancer Institute (NCI)...but in order to get that appointment I had to spend hours of waiting and being carted from one room to the next. After going through intense vehicle inspections and finding my way through a maze of a parking garage, I went to admissions where I registered as a patient. I was surprised to see the lady handling my case was so rude, never smiled, and acted like I just didn't exist. That already gave me a very negative vibe. Next, I was sent to the wrong floor where after waiting 15 minutes in the waiting room I was told where I was correctly supposed to go. I went to get more bloodwork done and by this point I was already on edge. Then I went to the 12th floor for a head to toe physical. After the physical the fellow said that it was going to be up to an hour wait in the room until I met the specialist.

So I decided to pass the time by calling my mom while I waited. I had convinced my mom not to come with me because she already had enough on her mind with the phone call I got on Tuesday and I didn't want her to wait around during tests and things I can do on my own. So we passed the hour by talking on the phone until I heard footsteps on the other side of the door. Then all of a sudden an army of doctors filed into this little room...one of them even wearing a public health officer uniform which was very intimidating. I felt like I was contagious with some rare strand of Ebola or something. The way they looked at me made me feel like I could die at any moment. After they introduced themselves they just stared at me for a few seconds.

The man in the uniform did most of the talking and asked me detailed questions about the start of my cancer all the way to the present. He then continued to my options...he strongly advised I stay away from chemo and go with an immunotherapy, as my body seems to reject chemo treatments and it will only make me weaker. He said that the immunotherapy can be followed up with a transplant...not just any transplant....a donor transplant. My original plan to use my own bone marrow was now off the table simply because my own cells are trying to kill me. Then he went on to say that with the transplant I have a 1/3 chance of being cured, 1/3 chance of having complications and inevitably dying from them, or a 1/3 chance I simply don't make it past the transplant at all. But I have a better chance of surviving this with an immunotherapy rather than a chemo, because the immunotherapy is less toxic and I can build up my strength. The only thing that worried me at that point was...who is going to be the donor. My siblings have to be tested and I didn't want them getting involved in all this. I was devastated. I met up with my mom and Linda afterwards, and they treated me out to bowling and a makeover to get my mind off of things...after a good cry of course. I'm just happy they were there for me when I needed them.

                                   (not actually....this is just how I felt that day lol!)

FRIDAY- This was the day I was going to speak with my oncologist and discuss what the next step was going to be...the only problem was, I waited by the phone all day and never heard from him...I even had a set time I was supposed to expect him to call but the call never came. I sent him an email hoping I'd hear back the next morning...

SATURDAY- I waited by the phone and had my email open most of the day and again didn't hear back...I was beginning to worry that something might be wrong...

SUNDAY (today)- I finally got a call from my oncologist...apparently there was some sort emergency with a patient when he was supposed to call me on Friday. We spent a good 30 minutes discussing the pros and cons of my options when we finally decided that we are going to go with the immunotherapy and potentially a donor bone marrow transplant later down the line. I'll be getting treatment once every 2 weeks and hopefully symptoms won't be too bad. There's no set end date for how long I may be on this as it was only approved a couple months ago, so there are no long term statistics.

So with all this information that I've gotten over the course of 7 days...I feel like I need a serious vacation as an escape to get away from it all. I haven't cried over this since Thursday but I do have this lingering question of "what has happened to my life?"...my odds are no longer very favorable and I don't really know how to take this. I don't know what this means for my future or the plans I once had. I worry about my family and friends and how they will take to this news. All I know is that I have to live every day to the fullest, keep fighting to stay alive, and just give thanks for every moment I get.

Running Out Of Time

While I have a moment to step away from the whirlwind of events I've crammed into these next few days, I've decided to breathe and write a quick little thing about the past week. On Friday, the first of July, I hit my absolute rock bottom. It started off as a pleasant day...I was making plans for the 4th of July (spending the day at Mt. Vernon) and for the rest of the week. I knew I'd be feeling close to normal (health-wise) and I wanted to go out and do things with friends while I still could. I woke up that day thinking 'June was a mess of emotions and since it's the first of the month I'm going to make the best of what I have!'...I felt ready to take on this month's challenges...or so I thought.

I then proceeded to take a shower and it took only about a minute for me to realize the horrible mess accumulating at the drain stopper. I was losing my hair in clumps. At first I was confused. I didn't see this coming until I started my transplant, to which I was planning on buzzing it when the time came closer. So there I am standing in the shower, stunned at the muppet forming at my feet. All I could do was start to sob...uncontrollably. No one could have prepared me for this, especially since I was told that there was a 20% chance of "hair thinning" with the immunotherapy...no one said hair LOSS.

I spent the entire day in tears and utterly traumatized. A lot of what happened that day is a blur to be honest. I called up a very close friend and former co-worker from the salon I used to work at, and thankfully she was able to see me first thing the next day to give me a quick pixie cut. I cannot thank her enough for seeing me especially since if she hadn't, I would have ended up shearing off my own hair with a pair of scissors my mom owns...and that wouldn't have gone over too well. But my friend gave me my confidence back and even though I'm not crazy about my hair being so short, I've gotten several compliments, which is nice. Now I just gotta work the Anne Hathaway cut until I buzz it off completely for the transplant.

So there I was starting the new week off at the lowest I've felt in such a long time. To top it off, my 4th of July plans were immediately scratched because of the rainy weather and fireworks were cancelled. Instead my mom, who works at a really nice Hilton hotel, made plans with her boss to give me a getaway from the house. She got a room for me to stay in...but not just any room...A SUITE! I've never stayed in one so I felt quite pampered. It included a really nice shower, a giant TV (to which I got to watch My Big Fat Greek Wedding 2 and a marathon of Game of Thrones), free snacks and ginger ale in the pantry at the lobby, and a free breakfast. It was pretty awesome and I totally felt like Kevin in Home Alone 2.

Then plans started picking up again and the day after the holiday my friends (Alex and Matt) and I decided to take a holiday of our own and spend the entire day at Ocean City! The moment we started pulling up to the inlet I came up with the spontaneous idea of parasailing, and with little convincing, we decided to give it a go. I've always wanted to do it and figured now was the best time...and it was AMAZING!!!! We were up 600 ft with a beautiful view of everything! We were soaring for quite a while and got pictures to remember the event.

(I'm the one on the right)

Afterwards we went swimming in the ocean, despite it being FREEZING. By the time we decided to hit the boardwalk I was covered in sand due to the intense waves. Haha! Then we got some munchies and hit the arcade. I wasn't expecting to do very much there as my energy was starting to diminish...but then I saw it. The game with my name written on it. PIANO KEYS. You sit down and it's essentially DDR but with a piano keyboard consisting of 4 keys. And (not to brag but) I swept the leaderboard 1st through 6th. Not only that but I got 953 tickets out of it! I was completely overwhelmed with joy and giddiness. I felt so proud turning in my tickets for a little seashell trinket box and one lemonhead.

The day came to a close and we headed home after that. It was so much fun that we're already planning our next trip for when I'm fully recovered and cancer-free. Then Thursday I met up with my dear friend Natasha for a lovely little outing at the Rio (a little shopping outlet and park). We were wandering in and out of shops when Natasha mentioned that the movie 'The Secret Life of Pets' came out the next day...and then DING! The spontaneous light bulb went off again. I suggested we hang out the following day and see the movie...to which we did and I'm so glad! Not only a great movie but I was really happy to have another day to spend with her. You are still the Hoops to my Yoyo! lol!!

So here I am after the movie and looking back on the last 7 days and all I can say is WOW. I crammed so much in one week and even marked something off my bucket list. Next week is going to be appointment after appointment at the doctors...and I'll probably be getting news about my transplant process. I feel like I'm running out of time...time to hang out with people....time for those long walks....time for freedom. All of that will be gone when I'm contained in my hospital room facing only God knows what kind of pains and struggles. So until the day comes where I have to start packing my stuff up and leave for Baltimore, I'll try to stay active and keep writing in my blog as often as I can. I'll do as much as I can with the time I have (in moderation with my health of course) and stay upbeat. It's all I can do.

"How do you write like tomorrow won't arrive? How do you write like you need it to survive? How do you write every second you're alive?" -Hamilton the Musical