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.

Mindfulness and Meditation

Uh oh...Maddie's gone MIA again. This time there's really no good explanation why besides just being lost in my thoughts and neglecting to document them. After my week in hell I kind of went into a "hibernation" of thoughts, fears, and seclusion from the world. There was a good week where I just didn't want to do anything. I kind of cut myself off from the world in order to process all the horrible news and doubts I got from the doctors and specialists. It was a blur really. I found it very hard to really take in everything, and guilt started creeping back into my life for having to get my siblings involved with my future transplant now. I felt horrible for my parents who had to take in the information and face the unknown. After the roller coaster of being told either I'm going to be cured or die...I just didn't know how to take this anymore. So I hit my shut down button and turned in on myself.

After a few days of hibernation, I started to be somewhat more active. I took my mom to Gettysburg, took up therapy again, and started attending a "mindfulness and meditation group" which really helped sort out my thoughts in a calming manner. In all honesty, I think I might have been lost without this group. My hair had continued to fall out to the point where I had to completely buzz it off. I also became very weak and my appetite disappeared. If I hadn't joined this mindfulness group and taken up therapy again, I probably wouldn't be here to write on my blog anymore. I would have given up.

The group even helped me get to a state of confidence when faced with my next obstacle...my new treatment. My first immunotherapy appointment was coming up and I went into it thinking "well I've gone through 2 kinds of treatments...I know everyone in the infusion center...I know I can do this and I'll just take whatever symptoms come with it".....little did I know this would be an ordeal on it's own.

I went to my first appointment with my head held high. I greeted the nurses there as if I had just seen them yesterday (it felt like I had). They got the needle into my chemo port with ease, but there was an issue with the blood return. After a few flushes and a little bit of time, they fixed the problem. I was then told that because it's immunotherapy, I didn't need any premeds (chalky steroid pills that keep me awake for hours) and they started me right away on my hour long IV drip. I started watching the news of Hurricane Matthew on their little TV system they have for patients...when all of a sudden I realized I couldn't take a deep breath. At first I just shrugged it off thinking maybe it was my anxiety...and then my breathing got shallower and shallower. I was becoming flushed and had just enough breath to call the nurse over and tell her I couldn't breathe.

All of a sudden it was panic in the infusion center. So many nurses rushed over to take my vitals, put an oxygen mask on, cut off my IV, and call over one of the oncologist to diagnose the situation. Apparently this drug was causing my veins to constrict and they had to administered a drug to fix it. They said I would need to take this as a premed before each of my treatments (darn). Once I was off the oxygen mask they started me up again on my treatment and before I knew it I was done. But since I had never had a breathing problem ever in my life, I was totally scared going to sleep that night...thinking I would go to sleep and stop breathing in the middle of the night and not wake up.

With a little meditation that I had learned from the group I was able to coax myself to sleep and haven't had an issue since. I may not be back to the mindset I was before my week in hell, but I can definitely say without a doubt that thanks to meditations, I am so much more better off than I was before. Sure I have my low points and dark moments but I truly think the positive outweighs the negative. We all have to find things to laugh and smile about. Every once in a while we just need to breathe and take notice that we are. I think everyone, not just cancer patients, should take a moment everyday and just look at themselves from the inside out, breathe, look around, and realize how lucky they are to be alive.

"Look around, look around at how lucky we are to be alive right now!" -Hamilton the musical

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.

Wait For It

Well the results are back folks!!! 

I got an email from my oncologist at 11pm last night saying the pathology came back...and we're looking at the same Hogkin's Lymphoma which means...NO HYBRID!!!!

This is brilliant news because at least we know what we're working against and the outlook seems mostly clear. Considering I had taken an entire month to do my fertility treatment, there is the likely possibility that these new progressions actually formed during that time. So my oncologist sent my pathology report to a specialist at NCI for a second opinion...during which time I'm going to continue my immunotherapy treatment one more round. Then I repeat the PET scan next month to see if there is any decrease. I'm so relieved because if there is a decrease then I'll hopefully be in remission by the end of the year and start on the new chapter of this journey...the bone marrow transplant. Although that chapter is scary to think about, I'll be happy to get it done and over with so I can move on with my life.

As I've stated before in my blog, I'm kind of in this waiting cell as I'm fighting this curse. Everyone around me is going about moving on, forming families, achieving dreams, working, and going about life...and I'm on the sidelines watching. But as the character Aaron Burr in Hamilton states "If there's a reason I'm still alive...then I'm willing to wait for it"...if everything goes as planned and I'm in remission by the end of the year then I'll be one step closer to TRULY living again. Until then, I watch the hours pass while the list of things I want to do grows. I might feel very much alone and secluded right now as people in my life are moving away, but I know my time will come to move on and start a new, happier journey. I'm willing to wait and fight for that.

I'm beginning to realize why people call a bone marrow transplant a "rebirth". It's not because you have no hair or you have to build back your strength and immunity. It's because you are now relieved of the curse of cancer and can not only resume your life but start things over. I originally was majoring in theatre at college, but this cancer has put a GIANT perspective on life. I want to use my talents to help others who are in my current situation. If I am given the chance of a "rebirth" I will change my major to music therapy. It's not only a successful career option, compared to theatre, but it's something I would enjoy doing as I would be helping bring smiles to others in need.

There are also many other things I'm waiting to do. I want to go out and meet people. I want to travel and learn about the many worldly cultures. I want to try to make a difference with whatever I have left on this Earth. I want to eventually have a family of my own. All of these are things I'm willing to wait for. People say "patience is a virtue"...well cancer patients know that all too well. Whether it's waiting for a diagnosis, treatment to be done, or for that confirmation of remission...strength and patience are what we learn best from it all. And it's hard to come to terms with that especially when we feel weak, helpless, or alone...and that's why I form a list of reasons to keep fighting. Afterall...I'm the one thing in life I can control.

Inspiration I got for this post is from the amazing musical Hamilton...check out this beautiful song:

https://www.youtube.com/watch?v=ReTP6x_sDiM

A Little Bumpy Road

Well thankfully this week has come and gone. I had been dreading my neck lymph node biopsy on Wednesday. Although I was very tense and nervous about it, I tried to mentally prepare and go in with an attitude of "just go in, get it done, and get out"...but sadly many things went unexpectedly wrong.

To start off, my mother and I came up with the idea that we would stay at the Hilton that she works at the night before my procedure...so as to beat traffic in the early morning and instead drive the 5 minutes it takes to get from the hotel to the interventional radiology department. So the day before the biopsy, we signed into our room, unpacked, and as my mom set off for work downstairs, I decided to make a day of it and take the shuttle to Tysons Corner Mall. I don't have a whole lot of money to splurge but I did go to the bookstore there where I got 30% off the new Harry Potter book, then got two bath bombs from Lush and got an order of pizza to take back to the hotel for my mom and I to have for dinner. I also got to look around at most of the other stores there which was cool since I never really have the chance go to that mall.

Anyway, so I head back to have dinner, a shower, and started getting ready for tomorrow. Sadly the next day already started off on the wrong foot by waking up to find that I was soooo sore from the hotel bed as opposed to the bed at home. I rolled out of bed, put on some loose clothes, packed up and started heading over to the Kaiser building. When we got there, the first thing I had to do was bloodwork not only for the procedure but also for my upcoming immunotherapy treatment. Got that out of the way and started heading down to where the interventional radiology department was. There aren't that many Kaiser sites that have these special radiology rooms. They look like a mini (3 bed) ER used for doing biopsies and procedures while also using scans and ultrasounds (which is what they used on my neck to find the perfect spot to stick me...it's the safest way in my case).

We signed in at the front desk and then waited. My stomach was already begging for food and water but because I was going to be sedated, I wasn't allowed anything. An hour of playing solitaire on my itouch passed and they still hadn't called me back so I decided to check what the issue was. I asked the front desk and was told that the patients before me needed more time (perhaps something went wrong with them or they needed more time coming out of sedation?). I then asked how much longer it would be and I nearly burst out laughing at the response I got....ANOTHER HOUR.

By the time I was called back I had been waiting there for 2 hours and 10 minutes in a waiting room...I was absolutely appalled and it was at that time my mind started racing. The battle with anxiety was about to begin.

When the nurse called me back, I could already feel blood pressure beginning to rise and despite feeling so prepared last night, I started getting serious worries. I worried about how safe the procedure was, how sedated I would be, how much pain, etc....by the time they were about to start my IV I was already entering a full-fledged panic attack. My breathing was off and it was actually rather terrifying having all these thoughts going through my mind. It wasn't until they started kicking in the sedation that I started to settle down a bit. The procedure went as well as can be expected, though the numbing process felt like my neck was on fire. They stuck me 6 times for the needle biopsy to make sure they had a large enough sample. I was actually really grateful for the doctor performing the biopsy as he knew my concerns and walked me through it at a pace I could tolerate.

When it was all over and I managed to drink a little juice and some crackers, my mom decided to take me over to the Silver Diner down the street to get a bite. I got my usual lunch whenever I go there, a grilled cheese. I felt pretty ok despite a really really sore and swollen neck. I was told that once I got home I needed to put some ice on it every once in a while throughout the day. As we headed home I started to feel a little queasy though. I thought this was because the country roads were a bit bumpy. I tried to sleep through it and had some fresh air coming in, but the moment we entered my hometown, was just horrific terror. In the middle of a one lane street my mom had to stop as I threw open the car and said goodbye to my first meal of the day. Obviously the sedation hadn't completely wore off in time and it was very unsettling to my stomach...not to mention tear jerking to think of.

The rest of the day I spent lying down on a mountain of pillows to support my neck and ice pack. I sipped on some soup which was the only thing I could keep down, and napped through several hours. It was quite the bumpy road that I truly wish I never have to travel down again. I should have my results in next week and from there we decide on what to do in terms of my treatment plan. My bone marrow biopsy will still be the finish line...this is just the detour we have to make to get there. In the meantime I just had my 5th immunotherapy treatment and I can already feel the fatigue slapping me in the face. Oh well...it isn't gonna stop me from trying to be productive as much as I can...but for now....

zzzzzzzzzzzz

Roses And Thorns

I never really admired the rain when I was a child. I think it's because I always had the mentality that rainy days meant staying indoors...which no child in the 90's wanted to do. The sky would go grey and the possibility of a power outage would linger in the air. We'd get out the board games and books to pass the time as the rain started to pour down. The worst was when kids would go to school looking forward to recess only to be told that it was cancelled due to the weather. It was always such a downer for me growing up.

It wasn't until I hit my late teens that I started to truly cherish the rain. Nowadays I love everything about it. The smell of the air just as it starts to pitter-patter and the sound of rolling thunder in the distance. The joy of stepping outside barefoot in the pouring rain as you walk around in the puddles...rain boots were never my style. And as your hair starts dripping to the point when you look like you're happy crying, you just start dancing like no one's watching!

I spent most of today running errands, getting my blood work done for my biopsy, and paying bills. The moment I got home and stepped out of the car I looked up and the clouds were sweeping in. The smell of the oncoming storm was overwhelming. My doctor would probably kill me for what I did next and my neighbors probably thought I was crazy...but I took the opportunity that nature gave and decided to have some fun. I splashed through the puddles and ran up and down the driveway. I spun in circles while laughing ridiculously. I kinda felt like Liesl from The Sound Of Music dancing in the rain.

Maybe it's because I'm a spontaneous extrovert. Maybe it's because I look for adventure when my life gives me troubles. Or maybe I just like to rebel at what life gives me and to make it my own. Lately my perspective has definitely grown in the fact that I try to notice the little victories and blessings every moment of every day. Don't get me wrong...there are definitely moments where I feel low, alone, and I go through a box of tissues in the span of a day. There are days when I feel trapped like the younger me on a dismal rainy day. But every rainy day has it's perks and there's always something to make you smile and be thankful for.

I suggest we all take a moment to look at our lives and appreciate what we have. A good friend of mine came up with a game called Roses And Thorns. The roses represent the good experiences and the thorns are the bad. For every thorn you say that happened to you today, you have to come up with two roses. By doing this kind of reflection every day, we can look back and see that the day wasn't wasted. You might be surprised to find how few thorns there are compared to roses. Because seriously...who wants a bouquet of thorns?
                           
So the next time it rains and you are stuck inside...or the next time you feel like there was no point to the day...or you feel low in general...change it! Make today your day! Find something to do that will bring you joy despite the gloom. Embrace the rain clouds you've been given and make the best of it. And at the end of the day, count your roses among the thorns. I guarantee you'll look back and smile.

"And rain...will make the flowers grow!" -Eponine from Les Miserables

Quite The Setback

I don't really know how to start this post besides saying I didn't see this coming. I mean I had my worries that my cancer would come back farther down the line, but I don't think anything could have prepared me for the news I received after this PET scan I had at the beginning of the week. This scan was supposed to be the green light towards my bone marrow transplant. It was supposed to show me either in remission or on the way to remission. Sadly that wasn't the case for me. Despite the immunotherapy, which is supposed to be highly effective for cases like me, it isn't working to the highest degree. It's successfully killing off the cancer cells that showed up at the beginning of the year, but at the same time new progressions of cancer are forming during my treatment. I'm in that 1% of unsolved cases again. It's beginning to appear obvious that my body is seriously trying to kill me.

My oncologist has no explanation for why this is happening and I have to go in for my THIRD neck lymph node biopsy in a couple weeks. This biopsy is to see if my cancer has mutated into some kind of hybrid which can happen in rare cases of my immunotherapy treatment. In the meantime I continue to do the same treatment since it's not killing me and partially working. After the biopsy my doctor will determine what treatment to proceed with...whether it's a different drug, a mix of my previous chemo and immunotherapy, a five day infusion of a harsher chemo, or a clinical trial and hope for the best. At the moment my bone marrow transplant is now postponed until who knows when since you can't get a transplant until you are in remission. I had just started getting my head around the transplant process and had the mentality of "well this time next year it will all be over with"....now I'm back at square one.

I spent the first day after receiving this news just bawling my eyes out. Now I'm going through a stage of anger and disappointment with my body. I've already wasted almost two years to this curse of an illness...while everyone around me is going on with their lives (finishing school, working, getting married, having families) I'm stuck in some sort of limbo. All the while everyone is giving me the broken record of "stay positive" and "you'll get better" but after hearing this twice and getting disappointed both times, I find it really hard to let that sink in again. I hate feeling defeated and being forced to pick myself up again. So I'm not going to look at this like I'm definitely going to be cured. Don't get me wrong, I want to be in remission, but I can no longer look to the future like I had been. This is now a war that needs to be taken one day at a time until I win...and I will win.

So now I'm making weekly plan sheets where I plan out each day with what I can do in terms of my energy. Most of the days I will spend studying, reading, watching documentaries, compose music, and learning everything I can. If I can't go back to school any time soon then I'll study at home. And even though my social life is diminishing slowly, I'll do what I can to stay upbeat. I will try to get more involved with my support group and other activities they can offer while I'm still feeling ok. I even found a children's hospice not far from town that I am looking to volunteer at and hand out my Happy Bags. I might even bring my ukulele and plunk out some tunes. Haha! My oncologist told me that not just being positive helps defeat cancer but having a sense of humor is key. If I can keep my attitude up and make others smile, laugh, or have a good time then that can help them AND me. I need to maintain this and as long as I do, cancer can't get the best of me. And as I've said before, my motto in life is a quote by Charlie Chaplin...."A day without laughter is a day wasted." Let's not waste any day we have. If you spread joy then you reap joy. Just something I think we can all work on during such struggling times.