Little Distractions

Hey peeps! Sorry I've taken a little longer to write something on here. I even meant for this post to be up yesterday, but with everything going on in the news about the Brexit vote, I got so consumed and didn't get around to writing anything. Needless to say, I was quite upset with the turnout but I'm not gonna spend time talking about politics on my blog. I also took some time for myself last week by taking a tiny beach trip to visit a close family friend with my sister. But I'm back now and just completed what is either my last or second to last treatment of immunotherapy (which will be determined on the outcome of my next PET scan in 3 weeks). So before I become totally zombified by fatigue next week, I decided now would be the best time to make a new blogpost.

With being past the halfway point of my immunotherapy and with my transplant coming up really soon, I've been pretty emotionally stressed and my anxiety has been building up on the inside. I don't have very many people I talk to about my fears since I don't really know how to express it to people who don't know what I'm going through. Not to mention my first instinct is to bottle it up. So by containing my struggles, I've been having an overload of thoughts.

Because of this, I've been trying to distract my mind of the stuff that is to come. I made sure to make a trip to the beach last week, because I knew it would be one of the few opportunities this year before my transplant and that I seriously needed it. I've had so much stress and emotions bottled up in my head that I needed to just get rid of and I manage to do that best at the beach. I spent a few hours just sitting in the sand watching the waves coming in...just hypnotized. I tuned everything out except for the sound of the waves and the smell of the ocean breeze. It was enough to bring my mind to halt and I quickly found myself in a blissful state of meditation. I managed to clear my mind and I noticed my stress levels dying down. After that I took a long walk along the beach with my ipod (with the volume on low). Besides the rosy sunburn I managed to obtain despite putting sunscreen on twice, I actually thoroughly enjoyed my beach visit. I was just happy I was able to get that reset button for the year and it has put me in a better frame of mind for my upcoming transplant. There is definitely something therapeutic to a day at the beach.

Along with some arts and crafts, books, and movies...I've learned that it's also the little things that make for great distractions. This can be taking the longer way home in the car after running errands and enjoying the view. Or exploring a new path when going for a walk in the evening and then sitting down somewhere to watch the sun set. Or watch a video of Ellen Degeneres or James Corden (definitely been the ones to make me laugh a lot lately and great pick-me-ups). Or plunk out a few notes on the piano. Or write a letter to a friend. Or light a candle or two and listen to some good soundtrack music and just daydream a story. And when feeling very very low, sing something...even if it sounds bad, belt it!! Haha!

Sure I still have the fears about what is to come but by having these little moments for myself, I manage to minimize the fears and come to slowly accepting my situation. I've even started making preparations for what I will bring for my hospital stay. I have my embroidery and coloring books in a box. I have a new journal set aside for the two months I'll be in Baltimore. I have a set of books stacked to take with me that I've already begun to read (thank you Dana, Gregory, Tom, Tiffany, and Mom). I even spent a little of my work savings to get an instrument I've always wanted to play...I GOT A UKULELE!!! It's beautiful! It sounds so cheery and it's color is a mahogany shade....so naturally I had to name it after the Hunger Games character Effie. ;) I'm hoping since it's so compact I can bring it with me to the hospital and maybe it will keep my spirits up while I'm there.

So that's pretty much the latest with me. I will probably post again for the 4th of July as I have plans on going out with my mom that day and to see the fireworks. I'll be taking my camera with me so I'll be sure to post pictures of that adventure. I'll also be tending to my Happy Bags project now that I officially got all the materials and goodies I need for them. I will post pics of them here when they are all done (there's a lot of them). I'm hoping I can take them to Johns Hopkins this coming up month when I go in for my next consultation...even if I can't personally deliver them to all the kids, I know I will be brightening someone's day. After receiving so much support myself from nurses, doctors, support groups, family and friends...I just want to give back so others can experience that love even from just another cancer patient. And with that, I'll leave this blogpost with a happy note.

Drawing On Strength

Hey peeps! So I just finished my second immunotherapy treatment yesterday. All went well and since they monitored me the first time, they didn't need to stick around long and I got to leave right after the needle was out which was nice. Though I have acquired my next symptom...nausea. Although very very mild, it still is very triggering any time anyone so much as mentions food or shows me a plate....my appetite is totally gone and I keep getting small waves of feeling like I'm gonna be sick. But despite that and the constant fatigue that has been plaguing me since my first treatment, I decided it's time I post an update on here. So hello again!

Since my last post (which I apologize for being about two weeks ago) I've been dealing with an emotional roller coaster. It hasn't quite gone away yet as I had a minor meltdown even at my treatment yesterday. The fear keeps creeping in the back of my mind about the unexpected to come and the loneliness I'm going to have to endure. But I've been trying to keep my mind distracted on other things as much as possible. It's always been a challenge for me when people say "go to your happy place" because I never really established one particular place in my head. I also have difficulty focusing on a specific spot in the room because then that just makes thoughts move through my mind like bullet trains. Sometimes instead I try to look at pictures and ask myself things like "where/who is this? what was this picture taken? who's taking the picture? what would I do if I was there?...etc"

However this was impossible this past week as I went into the dentist again to get some cavities filled. It's mandatory to do all dental work before you go in for a bone marrow transplant...I guess to minimize any chance of infection. So there I was lying back in the chair facing the ceiling waiting for my mouth to go numb. I can't exactly hold up a picture to my face to distract myself from the drill so instead I asked if I could put in my earbuds and listen to some music on my ipod. I got the ok and was told to just close my eyes and relax. I didn't exactly go to a "happy place" but when I turned on my ipod, I realized the last thing I was listening to was movie soundtracks...and I had an epiphany.

All throughout my childhood I did competitive figure skating. I used to pick my own pieces of music to skate to and they were always from movie soundtracks. I skated to everything from Pirates of the Caribbean, to Harry Potter, to Titanic, even the musical Phantom of the Opera and more. Every time my music would start I would envision myself as a character in that movie/musical and to me it wasn't just a skating program...it became a performance. Since my skating days, I've still embraced soundtracks and listen to them when I'm alone. Sometimes I find myself choreographing skating routines or act out scenes from that movie in my head for fun.

(This is me skating to Titanic in 2006)

But that day at the dentist was a bit different. The movie soundtrack that came on was from a Marvel superhero movie (specifically one of the X-men movies). With my eyes closed, I found myself not choreographing something, but seeing one of the characters in my head...Professor X (James McAvoy version although I have nothing against Patrick Stewart). He told me to make a list in my mind of every X-men superhero I could draw strength from and look up to. He told me with each one to really invision them and think of examples of moments where they showed that strength. So as the music started intensifying in my ears and the dentist started to drill, I went to work.

1. Mystique - for not being afraid to be herself
   
2. Magneto - for his passion in standing up for what he believes in (even if his views are sometimes in the wrong)
   
3. Beast - for accepting what has been done to him and moving forward with a positive light
   
4. Wolverine - despite having sass and a temper, he always puts those he loves first
   
5. Nightcrawler - for always holding true to his faith
   
6. Deadpool - HE'S A FREAKIN CANCER SURVIVOR AND KICKS BUTT!
   
7. Professor X - for overcoming his fears in order to do the right thing and going above and beyond to help others like himself
   

Those are just a few of the ones I listed. My list went so long that by the time I finished I was told the procedure was over and I could get ready to go. When I left and got in my car I finally realized...this could be my way with coping. With the hundreds of soundtracks I have on my ipod, anytime I grow fearful of something, I can draw on strength of my heroes/favorite characters and it will be a lingering distraction and a way to cope with my fear. I don't need a happy place to run away from my problems...what I need are people I can look up to in order to face these difficult times that are approaching. I got this!

Frozen In Time

Most people know a lot of the ways cancer can interrupt someone's life. As a child, it makes going to school and making friends extremely difficult. As a parent, it makes raising children and working almost impossible depending on the severity of the cancer. As an elderly person, it can sometimes send your retirement savings out the door and survival rates decrease with age. But the one thing that people don't really seem to get is you feel like your life has completely stopped. Everything you planned to do is either on hold or forgotten. You miss out on the opportunities that healthy people take for granted. And for someone who is 23 years old, the time when everyone says is the prime of your life, it's very hard to cope with.

I find that every time I reconnect or hang out with someone I feel so happy to see them and get all excited with the things going on in their life. Whether it's because they are graduating college, getting married, starting on their dream careers...and then they ask me 'what's new?' and then this little seed of jealousy begins to form. I begin to remember that I'm not working, not finishing school, don't really have a social life let alone a dating life...I feel almost like a failure because I haven't truly accomplished what I wanted to do in my life. My head just screams IT'S NOT FAIR. 

All these things I was hoping to do, I can't because of this mutation in my body. I kind of wish cancer was a mutation where you get super awesome skills like the X-men movies make it out to be. Then I wouldn't be complaining and would probably sign up to work for some cool secret mission.

A friend of mine once sent me a post about this feeling of isolation. It said cancer is like a kidnapping. It takes you away from the comfort and joys of life. It forces you to do things no person should have to endure. It messes with you psychologically and sticks with you for the rest of your life. It's true! Cancer is a kidnapping! 

And during that kidnapping it feels like you are stuck in a glass room forced to watch everyone else move on with their lives. The people outside of that room don't really know how to react. Some of them will stay close by...some will ask "what can I do to get you out?" (when we all know there isn't anything to be done except treatment)....and then there are the many who will wave and walk on by.

The ones who stick around are the ones who will be there for you when the glass walls come down and remission begins. The ones who say "what can I do?" are the ones who will stay in touch and be that extra wave of support. And the ones who walk by....well I've learned, they are the ones who come and go in our lives. You can't truly blame them because they have their own lives to lead....but this is where that seed of jealousy begins. It's human error to have jealousy...I for one am truly guilty of it. I experience it all too often when I'm on social media and see the amazing experiences my friends have. I know it's wrong and I know people have their own demons and struggles. It's just something I will have to overcome.

So while my life is frozen in time...what can I do? Well, I decided to make a bucket list. Bucket lists don't have to be for the terminally ill. They are a great way of brainstorming the things you want to do with your life and also to think of goals you can achieve in the meantime. For example, the top of my list of things to do is to go visit Harry Potter World in Florida....I know...I'm such a dork. 

But the next thing on my list is to watch the AFI Top 100 movie list. Last year I managed to get through half, and I still have many more to look forward to enjoying. Then I follow that with a big dream like meet celebrity like Ellen Degeneres or travel to Scotland....followed by composing a piece of music or reading all of Jane Austen's novels. I alternate between the big dreams and the currently doable dreams. There are quite a few things on my list, but it's a motivation and it truly makes the days have purpose. It's the little things that truly make life worth living and it's the little things that get us through the rough spots.

Not Alone

Before I begin this post, I'd like to apologize ahead of time if my thoughts don't sound too coherent. This is mainly because I am still physically and mentally drained from my recent immunotherapy treatment. I will try my best to convey my thoughts in either words or my lovely little gifs. Haha!

As I stated in my last post I completed my first immunotherapy treatment. It took hardly any time at all and thankfully I had no adverse reactions. Little did I know I was dealing with a raging storm on the rise. 

Unlike standard chemotherapy which is a series of toxic drugs that kill both cancerous and healthy cells, immunotherapy specifically targets your immune system and reprograms it to kill only the cancer cells. In order for this to work, your body normally reacts as if you got a really bad case of the flu since your body is working double time at killing cancer cells. Luckily the only "flu-like" symptom I've experienced is fatigue...but WOW did it hit me like a giant slap in the face.

When Monday came around I went for a dental cleaning....apparently it's mandatory I get checked out before my transplant. As soon as I came home from that I seemed to have passed out on the bed and slept through the entire day. I woke up around 1 am when my mother came home and she asked why I was awake. I told her my lack of activities today and she asked how I was going to sleep through the night. I simply responded "like this!" and passed out again. 

I slept through the whole night and woke up at 11am just in time to get ready for my first follow up with my oncologist. I was so out of it that morning that I came to my appointment with some major bedhead and had a giant sweater on in 75 degree weather to cover up my embarrassing sunburn...I was not in the mood for a lecture on sunscreen. My doctor proceeded to tell me that fatigue is extremely common and I should be feeling better by the end of the week. Then she said something to me that caught me totally off guard....if all goes well, I only have 2 more infusions of my immunotherapy before I go in for my transplant process.

We're still looking at potentially mid to late August when I'll be entering the hospital...so soon. Everything seems to be happening so quickly especially since most days I've spent inside with not much to do (rainy weather and all). What's worse is I don't even want to stay cooped up in the house all day. I'm 23 and I want to go out, travel, meet new people, work, go back to school...MINGLE! When I explained this to my doctor she told me that it's very common to feel that way. She told me I should go to my "young adult" support group, but I don't even feel like I can connect with anyone there. I'm the only 20-something year old and everyone else in the group is in remission. Then there's the fact that I can't really hang out with my friends as much because most of them are graduating and moving on with their lives. I don't want to bother them with something they can't really understand. And the times when I'm actually invited out to places by friends, happens to be the time when my body feels so dead to the world that I apparently look like an extra from The Walking Dead...and I'm forced to turn it down.

Obviously this past week has been taking a very emotional toll on me. The fact that I'm going into this transplant without really knowing what will happen and with only my immediate family to visit me in the hospital when they have the chance...it's very hard to take in. But the thing keeping me going strong is actually this blog. I've received quite a bit of feedback from you all and it has prompted me to keep writing more. I've been able to reach out to people like me, and by enlightening them about my story, we share a comfort that we aren't alone. The joys of having technology are in abundance. And it's through technology that I will be able to communicate with people and mingle when I'm alone in a hospital room. I take comfort in that and feel confident I can get through it...even though I fear it. Knowing this, I feel prepared when taking on this transplant.

Every cancer story is different because everyone faces it in their own way...but no story should be taken lightly. Every cancer story is a trial and a hardship for not just the patient but everyone around them. It's just another reason why I decided to write this blog...not just to show the strength and experiences I have...but to also display the weaknesses and fears that a lot of other cancer fighters face. Some people may read this blog to come to the realization of what family members, friends, and peers who have cancer are going through...others may read it to know that they are not alone....because you aren't alone.

Not Alone (by Darren Criss)  <------ Listen to this!!

One Battle Down...But Who's Counting?

This past Friday I had my first immunotherapy treatment. It is my first step on this uphill fight against my aggressive form of Hodgkin's Lymphoma. I normally don't like to view cancer as a battle though because even if I reach remission, the fear and anxiety of it returning will always be a little seed planted in the back of my mind. It's like that with all cancer patients. I experienced this myself last December when I finished my chemo because the doctor told me initially that it was all I was going to need to be "cured". People tell us survivors not think about it and to just move on with our lives when we are done with treatment...like it's the end of a book. But when you finish a book that took up so much of your time or thoughts, you don't want to put it down. You'll be thinking about it and remembering all the parts that stood out to you the most. It stays with you. It changes you.

Going to this appointment on Friday I felt confident and strong. I had the same team of nurses from my last chemo experience there for me. It felt more like I was going in for my Masters degree in dealing with cancer instead of just round two. So I wasn't really afraid and knew what was coming. It was an even easier experience than the last chemo since instead of ABVD (4 drugs), I just had the one (Brentuximab). However, despite all the confidence going into this, I knew that this was going to be the first step into a battle that will never really end. And I'm ok with that. It's either I learn to live with this anxiety or accept a death too soon....the latter not being an option. There is so much to live for in this beautiful world that I can try look past it and just take one day at a time.

I will admit, I did get a bit queasy at the thought of all the possible side effects of this drug. A lot of them were the same as the last chemo I had, but not all of them. There is a good chance I could lose sensation in my fingers and toes and can experience a fever for the first 24 hours after each of my treatments. Thankfully both of those didn't happen this time around and all I really experienced was a bit of fatigue which is very normal. No nausea or mouth sores to date, but I did get a lovely blush shade on my chest, shoulders, and face because I forgot to wear strong sunscreen. Drugs like that make your skin super sensitive (whoops...I'll remember next time that's for sure). My bad.

Overall I left the infusion center feeling very much normal actually...which is great! The last thing a cancer patient wants to feel like is someone who is lame or can't do anything for themselves. Cancer patients want to be active and feel like their life isn't any different than someone being productive. They want to be a part of something and want to socialize. We want to mingle, communicate, and laugh. And my motto in life is a quote by Charlie Chaplin: "A day without laughter is a day wasted!"

So I have come up with a brilliant idea...I don't have much to spend but I want to make "Happy Bags" for kids in the Pediatric Oncology department at this nearby hospital. If there is one thing I love to do is bring smiles and laughter to kids who need it most...who need to know that they are loved. I have so many ideas and want to try to make it a weekly thing while I'm doing my immunotherapy...before I myself have to go into the hospital. I'll post more about this in my next blog post when I have all the stuff I need. Stay tuned!!!

Congrats! You're A Mom!

After my procedure last week I entered my healing and rest phase. I'm still technically in that phase, but it's nowhere as bad as what it was originally. Two days after my procedure my stomach had swelled quite a bit and I felt like Violet from Willy Wonka...minus the blueberry of course.

It's called Ovarian Hyper-Stimulation Syndrome...otherwise known as OHSS. It's fairly common after this procedure and I had only a mild state of it. Things seemed to be settling down after a couple days until Sunday evening rolled in. I woke up in the middle of the night with absolutely crippling lower back pain. However, this wasn't a new pain I was experiencing. I have been dealing with this back pain for the last 2 weeks, but kept putting off seeing someone about it because the fertility treatment was my first priority. I know...stupid me. I had only myself to blame for the complete agony I was facing. And although this back pain only lasted about an hour after taking some over the counter meds and a FLAMING HOT bath at 4 am, it still kept plaguing me and my sleep.

So I made the decision to go to Urgent Care the next day since my usual doctor was unable to see me. They decided to run some tests to see if I had any infections and checked my back to see if there was any bone problems. I told the doctor that this had been ongoing and it only happens late at night for about an hour then goes away. They figured it's not the cancer or anything but probably something to do with my muscles. (Seriously I cannot express how painful it is when it comes...it's almost labor pain, it's that bad).

Then the doctor got the results of the urinalysis and came back looking quite concerned. As she closed the door behind her she started off by saying how everything looked normal and that there were no infections or anything. They scheduled an appointment with my primary doc and gave me some pain meds in the meantime. Then she told me something else came up on my tests. It was then when she dropped the P-word: Pregnant.

I was like OH HELLLLLL NO! IMPOSSIBLE!!! I think I may have even had a mini heart attack when she told me this because it was absolutely not possible. Unless there was some sort of divine intervention, there was no way this was accurate. She then calmed me down and told me that it was most likely to do with the fertility injections I was taking and that it was lingering in my system. I relaxed a little but then realized...shoot....they aren't going to let me do my immunotherapy this week if I come up positive for a pregnancy test despite it being a false positive.

So today I spent all day at the doctors...getting my back checked again, getting prescriptions, getting blood work re-done, and confirming my immunotherapy appointment. Thankfully my oncologist is well aware that it was due to my fertility treatment and she knows I'm not pregnant. So Friday is still a go for treatment! And not only that, it is confirmed that my back pain is a result to muscle related injury. Yay!...I guess? But I have the all clear! This Friday I start my first immunotherapy treatment and my first step on this uphill battle for my life.

Something To Hope For

Bear with me when reading this...I'm still recovering from yesterday's adventure.

It was a very long day for both my mom and I. We woke up with very little sleep yesterday morning at around 5am to head over to the fertility center where my finish line stood waiting for me. Soon after I signed in and sat down in the waiting room, we were whisked away to the pre-op room. I may have looked dead to the world but on the inside I felt like the energizer bunny. So many thoughts were going through my head: Is it worth it? Will it be successful? Will I have any complications? What if the anesthesia doesn't work? Will I be in pain?....you get the picture.

Thankfully when the anesthesiologist came in he was very quick about putting the IV in and explained everything in a manner that was very calm yet entertaining. I admire him for that since it was 7am and he seemed to be rather chipper. He even joked with me saying he needed my other arm for the second IV and for a brief moment I was like WHAT??

Shortly afterward I was brought into the OR and before I knew it I was out like a light. My brain is still kind of fuzzy after that. I remember the doctor coming in telling me that they were able to get 13 eggs which was pretty remarkable especially after 6 months of chemo I did last year. Of course then he followed up by saying he won't know how many will be able to freeze since they have to be tested to see if they are mature enough. The next thing I remember is the nurses asking if I could walk a straight line which I seemed to have mastered quickly as the next memory I have is waiting in the pharmacy for pain killers. Then I remember being in the car and feeling sick to my stomach every time we went over a speed bump...seriously hate those things. And then I slept pretty much the rest of the day.

But then I woke up this morning to the best news I could have asked for. One of the nurses called to tell me that they were able to freeze all 13 of the eggs. They said that this was pretty much a miracle as normally not all the eggs that are retrieved are mature enough to freeze. She also said that since I am very young doing this, it definitely improves my chances of having at least 1 or 2 pregnancies!! I am gonna be a mom one day!! And the sweetest thing about this is tomorrow is Mother's Day. I felt so happy that I had to go and celebrate the most fitting way possible....by going to see Marvel's Captain America Civil War movie.

I'm still in recovery though. My insides feel all messed up and I'm bloated which is incredibly uncomfortable. But I can now say, after the news I got this morning, I have no regrets. Now I can climb this uphill battle with cancer with some light at the end. A family of my own and a life to hope for.