Fifteen Minutes Of Pure Terror

This morning I went in for my final pre-transplant appointment, where I got my radiation measurements done, as well as attending a class with one of my nurses to go over the dos and don'ts for these upcoming three months. It started out a little rough as I was once again reminded of the dreaded radiation appointment to come. Fortunately the doctor I saw today was very reassuring and told me not only will I be on strong anti-anxiety meds, but I can play some music during the half-hour session to make things more comfortable. After a teary moment, I seemed to come to terms with it especially since it's only one day and apparently a very low dose of radiation.

Next was the caregiver class that my mom and I attended. We went over my schedule as well as how to take care of my catheter which I will get on Tuesday. Everything is approaching so soon and although I'm prepared, I'm still pretty anxious...mainly because I just want it done and over with. It all seems to be coming together. So to celebrate the pre-transplant testing being done, my mom took me out to grab some dinner. All was well until we arrived at the restaurant.

Just as I sat down at a booth, my phone was going off. I answered the phone to my sister in a panic. My sister, as I've mentioned before, is my donor; a complete match for this bone marrow treatment. So the moment I heard her voice I knew something was up...and the words I heard out of her mouth sent my own mind into panic mode. "They are postponing the transplant!! They need me to do more bloodwork at the last minute and therefore the transplant has been postponed a week!"

My first thought was "No...No....Absolutely not...NO!" So after reassuring my sister that this will be sorted, I called the coordinator (who happened to also leave me a voicemail on my phone with the same notification). My hands were shaking as I was waiting for her to pick up. It's a bit of a blur recalling what I said to the lady when she answered, but I know I told her off. I said it was incredibly unacceptable since I not only scheduled everything with caregivers and agendas, but my life is literally on the line and I cannot push the transplant back any further than the set date. For example, if I did, I would have to redo the PET scan which will most likely show some minor growth happening (since I haven't had chemo in over a month), and that would mean I'm no longer eligible for transplant. So the coordinator told me that she would make some calls to see what she can arrange and get back to me.

Fifteen minutes passed in sheer terror...I could sense I was already on the verge of a panic attack. I'd come so close and so far...there was no way I could put off the finish line now. Those fifteen minutes were not only the longest in my life but the scariest. It actually put my phobia of radiation into perspective. One could even say God was testing me to see if I truly wanted to proceed with a transplant...and HELL YES I DID!

Finally, I got a call from the coordinator telling me that although the phlebotomy station that usually does bloodwork is closed for the weekend, she managed to persuade the transplant clinic to squeeze my sister in to have blood drawn bright and early tomorrow morning. This means the bloodwork results will be back JUST IN TIME for my first treatment next week. I was so relieved that I don't even remember how the conversation ended...all I could think of was "I cannot believe this just happened..."

So after a good meal and a stop off at the pharmacy to pick up a giant box of transplant supplies (literally a box)...I managed to get home with a sense of relief. My mind is a little more relaxed, but my heart is still racing. That could have been the worst news ever if they hadn't figured out a solution and postponed the transplant. Hopefully, with a good night's rest, the shock will subside. Onwards and upwards, right?

Only Uphill From Here

Today was the day I just made a decision that could define the rest of my life. This morning I woke up to a phone call from NIH, wanting to know if I wanted to proceed with the clinical trial or not. I told them when I last spoke to my doctor a week ago, he told me to continue with the screening for the clinical trial while he spoke with my transplant doctor to see if he was still on board with this last chance shot of the ICE chemo. I finished screening on Friday with a biopsy to confirm that I'm still dealing with the same strain of cancer and not a hybrid. Now that the screening passed, they were set to start me on the clinical trial by admitting me overnight to get a catheter put in...all they needed was my consent to move forward. Without hearing back from my oncologist, the pressure was high. Doubts were running through my mind at the last minute.

During the phone call, I was told that there is no future date set for the clinical trial. They are looking at the end of January as a potential availability...but if I proceed with the chemo, I'll most likely miss that...and then who knows how long of a wait it will be until it's available again. This means...if I choose to do chemo and it doesn't work, then I'm stuck out of options entirely. On the other hand, going into this trial is very very risky and is most likely not to work at all...whereas statistically speaking the chemo stands a better chance....although my transplant doctor might debate me on that since I didn't initially respond to most of the other treatments I've tried. The odds have never been in my favor.

Thankfully NIH was able to get me in touch with my oncologist at the last minute, and he basically told me that whichever decision I make it's not a wrong one...we are in such a grey area that no matter which option I pick, it will have risks. After conferring with him, I told him that I just had a good feeling about this chemo...and if it gives me one more shot to a transplant, then I want to take it. So he told me he would let NIH know of my decision to put the clinical trial on hold for now (again), and he would contact the hospital to see when I could be admitted.

WOAH WOAH WOAH...Hold up....admitted???

Apparently, that little detail escaped my oncologist when he last spoke with me about the ICE chemo.

I knew it was a lot harder and more toxic, but I had no idea it was done, inpatient. He then told me that the treatment can cause very bad nausea and the first day of the treatment is a 24 hour IV line of the first drug. Then I have two or three more days of chemo in the hospital before I'm discharged. I'll have 2 weeks to recover before I have to report once again to the hospital. This was a bit of a shock considering how close it was to the holidays, and the idea of spending Christmas day in a hospital bed starting this chemo wasn't ideal. However, in a couple hours, I was able to shake it off...I thought to myself, if this has the potential to provide a miracle, what better gift could I ask for Christmas?

I have this week to prepare myself and I go to the hospital next week. I honestly just hope that I respond well to this chemo. I don't care about losing what is left of my hair...I also don't care about the wretched nausea. As long as I stay breathing through it and survive the next three months of this treatment with no progression of cancer, I'll be happy...even more so if I can get into remission again. But like I said, I have a good feeling about this chemo. The people who did the biopsy said that the progression of cancer was very minimal during these last 2 months...so much so that they had to go deep into my chest wall near my heart to get a very small tumor to biopsy. Hopefully this means it won't take long for the day of remission to come.

So Much Uncertainty

Yesterday I received the dreaded call from NIH. After spending a good 15 minutes going over health questions and reviewing the risks involved with the clinical trial, I got some of my own questions cleared up along with a general schedule of events which I'm not crazy about.

They told me that if all goes well with the blood tests, scans, and biopsies, then I can start on the clinical trial as soon as the 18th. If that's the case, I go in on that Monday to get the T-cells taken out of my blood through a catheter. Then I have no plans until that Friday or Saturday when they will want me to come in and do 3 days of chemo (this means I could very well be doing chemo on Christmas morning...lovely). During this time they are genetically modifying my cells so that by the 27th, I'll go into NIH as an inpatient, receive my cells and then be monitored until January 6th...guess I'm not celebrating New Years either...yay...so much for celebrating the holidays.

While I'm inpatient, there is a very good possibility that I will have to deal with CRS (cytokine release syndrome). This is like when your body responds to the flu or a virus...except ten times worse. I can experience fevers up to 106, high blood pressure, quick heart rate, and even neurological side effects like problems with speech. They told me this is common and even deadly, but also reversible if caught in time.

As if that wasn't enough to scare the living daylights out of me, I also found out that only 2 other Hodgkin's Lymphoma patients have done this clinical trial...both of which initially responded, but in a matter of a couple months relapsed. Currently, they are still in the first stage of the trial and that means they are only administering the smallest dose. Meaning...if this doesn't work or I relapse, I can't go in and get a higher dose...it could be years before they go to the next phase. I would have to resort to "some other therapy" and I'm already low on options.

So although I'm prepping going through hell and back again for this clinical trial, I've already sent my oncologist an email with this information and have told him that if there is any other trial with better odds (even out of state or country) I would rather shoot for that. I'm that desperate. I will not go down without a fight but at the same time, I must admit, I'm starting to wonder if there will ever be a cure for me. As much as I want to keep pushing for answers and options, I can sense I'm already starting to lose hope. After everyone told me how "promising" this clinical trial is, it doesn't seem to be for my particular cancer. I don't want to surrender but I also don't want to fool myself into doing something mentally traumatizing if it will have hardly any effect on me.

In the end, I'm just going to have to wait to hear back from my oncologist. I have an appointment to get A TON of bloodwork done and an EKG tomorrow. I told the doctors at NIH that I refuse to go forward with any other scans or biopsies until I receive the blood test results. I'm not doing a repeat of this past February. And why bother testing anything else if I may not even be doing this trial at all (either because the blood tests come back and I'm not ready, or I find a better option)? Nothing to do but wait and see, I guess.

Iron Man Saved The Day

One day before my lymph node biopsy, and I have already had a major break down. I knew from the moment I got my schedule of this whole ordeal that this week was the first week of this hellish month. It started off easy with simple blood work, CT scan, heart ultrasound, a trip to see a dermatologist and an endocrinologist...all things I was able to do on my own. This was just the calm before the storm.

I left the house, with my mom, at 6:30 in the morning in order to reach NIH by 8am (traffic's a killer when you live out in the country and have to go into the city). I dressed for the occasion with my Deadpool socks on...the thought of "get it over with" racing through my mind. First I had a PET scan...I've lost count as to how many of these I have had in the past. For those who don't know what the protocol is, you are taken back into a room where they test your blood sugar (the finger prick test) and then hook you up with an IV. Next thing you know, they are giving you an injection of radioactive tracers and then they leave you alone for an hour so the tracers can work their way around your body. Then after an hour goes by you go and get a full body CT scan. This whole process takes about 2 hours. 

Anyway, I was getting my IV hooked up, and for some reason I started to become anxious and teary-eyed. When the technician (who looked to be in his 50's) asked me what was wrong, I told him that I was very nervous and quite scared about my upcoming clinical trial this next week and how it's incredibly risky. He then responds with "I know how you feel...my mother is having heart problems and will have to do a clinical trial"...my jaw almost dropped, and not because of his mother. First of all, you don't tell a cancer patient "I know how you feel" because 99% of the time YOU DON'T. Every cancer case is different and everyone handles it in their own way. Secondly, he was comparing me, a 24 year old facing a terminal diagnosis, to his mother who I would assume is over the age of 65...WHAT?!?!? That was enough to set me off first thing in the morning.

After I got through my PET scan and met up with my mom in the cafe for a light brunch, I had to make my way back to the radiology department where a nurse could check my veins to see if they would be ok for the upcoming trial. Now I had been told by the research nurse a few days ago that I will most likely not have any complications here and have no need to worry...therefore I didn't think much of it when I walked over to the appointment. Unfortunately...the moment I sat down and the nurse looked at the veins in my arms and hands, she told me that they wouldn't be able to put catheters into my arms for the clinical trial...instead I would need to have a catheter line surgically inserted into my neck or groin the Monday morning before I start the 4-6 hour long clinical trial procedure.

At this point I had just about had it. I pulled my beanie over my head so no one could see the pure anger heating up on my face. I literally wanted to scream. Here I am, trying to be strong, trying to be brave, doing what I have to do in an attempt to save my life...and yet it feels like no matter what I do, nothing can stop this snowball of bad luck/news from growing. I'm already trying to wrap my head around the fact that despite having a chemo port implanted in my chest, the folks at NIH want to put a picc line (an implant catheter) into my arm for extra measure. Now I have to go an extra mile to get ANOTHER procedure to get a catheter placed in my neck. Not to mention I still have no idea what the timetable is for this upcoming week, I don't know my odds, and my family is struggling with the possibility of my having complications. I immediately broke down and I wish I had a pillow to scream into.

Finally I had one last appointment for the day...an MRI. I had only had one of these before and it wasn't a pleasant experience as my ear plugs fell out half way through and the technician didn't want to stop to help. I had to lie still with the clanging noises blasting in my ears while stressing over the thought of having cancer at the age of 22. When I was brought back to get my second IV hooked up for the scan, I told the tech everything that had happened before. I was kind of an emotional mess remembering that and also because of what had happened at the last appointment. He was very quick at reassuring me by giving me a buzzer to press in case that should happen, so they could stop the scan and help me. He then put my ear plugs in and placed a rather comfy set of headphones over top. I joked saying, "You should hook up some music to these!"
To which he replied ,"No problem! What music do you want us to play?"...in disbelief I said ANYTHING!!! He laughed and asked me what genre of music I like to listen to when I'm down. I blurted out classic rock. All of a sudden I started hearing music in my ears...and through the welled up tears I started to laugh as well. The moment came when I was told the scan was going to begin and just as the table started rolling me into the machine I heard it.....
"*click* *click* *click* *click* I AM IRON MAN!!!!".....I found my strength again.

I left that appointment feeling so much better thanks to the AWESOME experience the technicians gave me. I even gave them high fives on the way out. Not only was this day ending on a better note, but it gave me new confidence going into this. This month is only going to get harder, each day being more difficult than the last. I'll admit...I'm scared, vulnerable, and still worried about what the future holds for me if I have one, but I'm going into this clinical trial with guns blazing and a determination to fight.

That being said...there's one thing I want to discuss before I end this post. In the past several days I've been getting a lot of people acting like I'm already on death's door...just so you know, I'm still kicking and walking on my own. I also deal with people who CONSTANTLY tell me to stay positive and don't stop fighting....as if I haven't been positive for the past two years! I never stopped staying optimistic and I have NO intention on stopping this fight. The one thing I can't stand more than that, is the people who are delusional or in denial about the severity of the situation. I am in a spot where if I don't do anything, I die...but if I go into this clinical trial there is also a 50/50 chance of dying as well...only quicker. Now I am hoping that I pull through and survive, but I'm not going to dismiss the feelings I have about the possibility of dying and just pretend that everything is hunky-dory. So to address these people and pretty much everyone...if you want to talk to me, then talk to me as if cancer doesn't play a role in my life. Talk to me like I'm still Maddie, because believe it or not, I still am. And especially don't tell me things like "oh I can't believe it's as bad as you say it is" or "you're going to be cancer-free soon enough"...it honestly doesn't help me to think like that. I think I might elaborate a little more on this topic in my next post...and if all goes well, I plan to write even more often this coming up week and the next. For now, I need to call it a night as I have my 4th lymph node biopsy to go to at the crack of dawn....yay....

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

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.

A Never-Ending Battle

So hey peeps! It's been a while since I've written in this blog...and I kind of failed at it last year during my chemo treatments. So I figured I might as well just do a recap of everything that took place last year up to now...cause it's a rather intriguing story and not to mention, an ongoing uphill battle. So hang on tight....it's quite the ride!

After my butchered biopsy (which I still have a pretty wicked scar on my neck from), I had my first PET scan and my first bone marrow biopsy. The PET scan wasn't as bad as what I thought it was...just very time consuming. Unlike CT scans and MRI's, you get injected with this radioactive dye and you have to stay in solitude for I think about 45 minutes or something like that. Then you go into a CT scanner and the radioactive dye picks up the glucose from the cancer cells in your body and confirm what is there. I find these easier than previous scans however there is a lot of radioactivity so they can't be done back to back. The bone marrow biopsy is definitely a pain in the rear...and I mean that quite literally. To be light on the subject, they stick a needle into your hip bone and extract bone marrow for testing. Luckily I opted to get some meds to make me a loopy and tired but I'm still awake during it which is a bit unpleasant.

However I made it through and got the good news that I didn't have any cancer in my bone marrow. This meant I can move on to the next step...chemo.

Now when you have to go in for chemo every other week, they suggest you get a chemo port put into your chest...this makes accessing a vein a breeze....the procedure is quite awkward but done rather quickly. Then I went to my first chemo treatment a couple days after that. I was on ABVD chemo...which are four drugs administered once every other week for 6 months. My mom luckily was able to work that in her schedule and brought me to every appointment from July to December. If it weren't for her, I don't know what I would have done...she was there holding my hand through it all...thanks Mom, I love you.

Anyway, as I went through every treatment I noticed my body didn't react like a standard cancer patient...which could be because I was generally in good health and I was young. I didn't loose ALL of my hair but lost about half and thinned to the point where I had awkward patches. I also didn't experience much nausea until the last two treatments in December...those were the hardest. Instead my biggest symptom was mouth sores but even went away with each treatment. And despite the emotional stresses I went through and the fact that I had to ultimately take disability leave in August, I was one of the lucky chemo patients. By the end of it all I celebrated Christmas with family with the thought that the new year would be better and had so many plans. I was going to go back to work, I wanted to travel to Europe in the summer, I wanted to get an apartment, and I wanted to go back to school. But everything was completely demolished the moment I had my first PET scan after chemo.

The scan came back with a little tiny acorn of a cancerous reading in my chest. We thought it could be a false positive so we aimed to try again after a month (you can't do PETs back to back). When I did it a second time, I got the awful call from my doctor telling me I had to skip work and come in. There she told me words no person ever wants to hear. Not only did my cancer come back, but it grew 3X it's size in one month and was past the point of chemo/radiation. I would ultimately need a bone marrow transplant with a donor and she left me with a 5 year life expectancy. This was coming from the same doctor who told me just last year that this was curable and all I needed was chemo. I was broken...and I wouldn't have it.

I sought a second opinion at Johns Hopkins in Baltimore and there they actually gave me options. They would put me on immunotherapy and then because my bone marrow came back negative for cancer a second time, I would be able to use that for my bone marrow transplant. It's quite complicated when explaining how it works, and I will probably mention it when the time comes. But for now....this is what I face....and this is latest update.

I start my immunotherapy on May 6th and I do this every 21 days for 3 months and then I go into prepping for my transplant. I'm very nervous, very scared, and very very on edge about this. But as I've learned this past year...I need to take one day at a time. If I do everything Johns Hopkins says, I will be able to stay alive for most likely longer than just 5 years...if I do nothing, I won't even make it to the end of this year....and that's not an option for me. This may be a never-ending battle...but what life isn't? And this is the thought that makes me feel normal.