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.

I Get Another Shot

Wow, what a roller coaster it's been in just a week. It always seems that a trip to NIH indirectly gives me a blessing in the strangest, unexpected way. At the start of last week, I was preparing myself for what seemed like a truly horrible experience and also one with very little odds. I went and had 20 vials of blood drawn, a CT scan, a very uncomfortable MRI, an echocardiogram, a physical, and a giant consultation. I even had a crazy ordeal where I tripped over a traffic cone that I didn't see and someone unnecessarily called an ambulance despite my attempts to say I'm ok....it was so stupid. And yet once again, it seems I may have done it all for nothing...but with good reason. I HAVE ANOTHER OPTION!!!

I was told by NIH that the clinical trial was still in its very early phase with the lowest dose possible. It was already done on two patients, both of which initially responded but relapsed after only 4 months. It's promising but at the moment it doesn't have very good odds to convince me to go through it all. So at the beginning of the week, I sent an urgent email (or two...or three...oops) to my oncologist explaining the situation and begging him for any other possible options.

While I was sending him one of the emails, I recalled what happened when I first relapsed in January of 2016. My oncologist at the time told me she estimated I only had 5 years to live (yeah I didn't stay with her for very long afterwards), briefed me on a transplant and told me that I was to do a very intense chemo treatment known as ICE. Eventually, I got a second opinion and we went with a different kind of treatment...one that wasn't so toxic but ultimately ended up being not very effective. And then it dawned on me...there was a chemo that I hadn't tried!!! ICE chemo was also statistically proven to be successful with primary refractory Hodgkins Lymphoma (the 1% of lymphoma patients...aka me). Immediately I sent my doctor an email with this information and asked for his opinion expressing my strong desire to aim for a transplant (even though there is no guarantee that I will respond to anything).

So as I waited for his response, every trip I took to NIH to proceed with screening I did so with the hope and prayer that I may not need to go back there and resort to a clinical trial that most likely wouldn't work and under the doctors who treat me like a lab-rat and not a human being. God knows I have been a bit weary in my faith these past 2 years with cancer....but I went to the NIH chapel after every appointment and prayed for one more chance at a transplant. Just one more chance.

About an hour ago, I received the call from my oncologist. He is definitely willing to give the ICE chemotherapy a try!! It will be tough, I'll be sick, I'll lose my hair...but he and I definitely think it's a shot...my only shot...at a transplant. He warned me if/when the time comes for transplant, I cannot hesitate or delay. And I told my doctor that if he told me I needed to get a transplant tomorrow, I'd be packing my things up right now and going first thing in the morning to Baltimore. I know what the stakes are now and I'm ready to get to work. BRING. IT. ON.

(If chemotherapy was a college course...)

So I'm supposed to get a biopsy done this week to double check and make sure I'm not dealing with a hybrid cancer (that would change the whole outlook entirely if it is...hopefully, that's not the case). During the rest of the week, my oncologist is going to get in touch with my transplant doctor again to get their opinion. If they aren't on board anymore, he's going to speak with other transplant specialists at Johns Hopkins and even the transplant coordinators at NIH if necessary. But it looks like my prayers have been answered and there's a chance transplant may actually be in my future. The fight isn't over yet and the battle to stay alive has begun. This has already been the best Christmas present I could ask for, to be honest. I'll update again as soon as I start the treatment which will be in the next week or two. I'm going to pray that I don't experience any adverse reactions and I tolerate it well. More to come but tonight is a victory!!

The following video was essentially what was going through my head this week...(the king and sheriff are the two NIH doctors I've been seeing) 

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.

I Saw It Coming But It Still Hurt

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

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

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

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

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

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

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

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

Crushed

I'm still at a loss for words after what happened this past week. I'm still trying to cope. I'm still grieving and still very bitter. My body is quite exhausted after all the stress I have taken on and everything I went through, that it's been a struggle every morning to get out of bed or even talk to friends and family members. I understand everyone is concerned and trying to find solutions for me....but at the moment I just need to breathe, gather my thoughts, and build myself up again. I feel like people are shoving things down my throat, telling me what to do and what not to do with my body...telling me I need to do this and that....criticizing me for doing this and not doing that. I'm not avoiding people...I just don't have any words and I'm still very numb. Even the tiniest things set me off now. I feel broken, my body crushed.

I found out that the reason I would have to wait 6 months to do this clinical trial is most likely because the numerical sequence found in the cancer that the T-cells would attack, can also be found in the uterine lining in women who have normal estrogen levels (which I have despite several treatments I've done). Therefore, to prevent that attack and my possibly bleeding out during the procedure, I would need to do lupron shots or some kind of hormonal therapy for 6 months to prevent the numerical sequence from showing before I undergo this type of clinical trial.

I don't know if I have 6 months. I don't know if it's worth the wait. People are telling me "oh just get a hysterectomy"...but I don't think people really understand how that was never supposed to be on the table, it will definitely have an impact on me as I'm only 24, and I'm not mentally prepared to even consider it yet. I have sent out 2 emails desperately asking my oncologist to send me any other options in terms of treatment...I have been waiting by the phone all day with nothing so far. I'm waiting to hear from the nurse at NIH to see if I can have my scans sent over so I don't have to wait another month and a half to have another PET scan (as the one I had was unnecessarily done in the end). I'm looking into other places, but it would be nice to hear back from SOMEONE before I make any decision on what to do next.

So here I am stuck in this limbo...waiting...impatiently...riddled with anxiety. Wondering how much my cancer has already progressed over the course of the past month or so. Wondering what options are left for me...if there are any. I'm so much more scared than I've ever been and trying not to let it show 24/7. I can't sleep well because of that. I'm trying to hold onto what little strands of faith I have left, but I feel like it's slipping through my fingers. I know I'm not alone but oh how I feel it, all the time now.

NIH Update

Just as I posted my last blogpost, I received a call from NIH. It was a call I was hoping never to get. Despite the screenings and tests I have already gone through...I was told I can't partake in the clinical trial after all. Apparently they need me to be on hormonal therapy with my gynecologist for 6 MONTHS before I can be on any clinical trial. So after all of the processing, tests, scans, the mental preparation of the upcoming month.....I'm told that it was all for nothing. I was ready for it and on the eve of the first biopsy with the trial starting on Monday...I'm told I can no longer do it. And the doctor even had the nerve to say "Oh I understand how upset you are".....I actually started to yell back on the phone. No they don't. They don't understand that I waited a month to hear from them after finding out my cancer was practically terminal and that this was my only hope. They don't understand that I said yes to a clinical trial knowing full well it could potentially speed along death in the hopes that I might live. They don't understand the impact this decision has had on my family and how it was literally the only prayer answered...now taken away. I am a mix of so many emotions right now and I can't even compute it all right now. I need time but I don't even have that. I have already sent a message to my oncologist to see if there is ANYTHING I can do and begged for help. I will even travel to the ends of the earth for an answer. But this is the biggest setback I've ever had and I feel incredibly hopeless.
So please disregard that last post...it means nothing now.

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....

Guinea Pig

It's been quite sometime since I've been able to say this on the blog, but....I got good news!! In the afternoon on Valentine's Day I got a phone call from one of the research doctors at NIH. They said they have a start date for the first round of the CAR T-cell clinical trial.

February 27th is when things will get underway. Although it's very good news, and this could potentially change my life if all goes well (50/50 shot)...I feel very uneasy about the whole ordeal after learning all the details.

Tomorrow I go in to meet with the doctors again at NIH and to get blood work done...woo....I did this back in the fall of last year when I was looking for answers, so this is the easy part. Then starting next week I begin the cycle of scans. I have to get a PET scan (so used to these), an MRI of my brain (obnoxiously loud but doable), EKG (the thing where they put stickies on your chest and they get squiggles on a paper of my heart and stuff), Eco cardiogram (which is an ultrasound of my heart), and last but not least ANOTHER neck lymph node biopsy (these are NOT fun and I've already had 3). And I may very well be getting my THIRD Bone Marrow Biopsy (which is incredibly painful, they don't knock you out, and I remember everything from the last two...even got sick the last time...so fun). Most of these scans and tests will be taken place over a day or two...I will be leaving NIH feeling miserable every freakin time.

Then first thing on the 27th, I go in to start the project. They will be putting 2 catheters in (one in each arm), and hooking me up to a machine that takes blood out of one arm, cycles it through the machine to take out the T-cells, and returns my blood in the other arm. Not too bad, right? Well the following three days I go in for chemotherapy....again.

It's a low dose of chemo so I won't be losing my hair or have to take steroids...I'll just feel kinda nauseous. During this time however, they are genetically modifying the T-cells they extracted, so that they will specifically target my cancer and kill it. The moment they are put back into my body, they will replicate and start attacking. It'll be an army of T-cells!

That same week I go in to retrieve my T-cells with a simple infusion. It's all over right? NOPE! Due to the likelihood that I will be experiencing "reversible but intense" symptoms, I have to stay overnight as an inpatient in their hospital for 9 freakin days. It's not as bad as the 6 month stay of a bone marrow transplant at Johns Hopkins, but I already feel like a major lab rat at NIH...only I've been promoted to guinea pig instead. Let's face it, I'm going to go mad.

And yes I know what everyone is going to tell me...read books, bring your laptop, watch movies, talk on the phone, etc....all the things I'm already planning on doing. But I'm a social butterfly...I need to be around people (preferably people who are not my doctors or nurses). Don't take this post the wrong way...I'm SO INCREDIBLY happy that I got this phone call, and that I'm starting on this clinical trial ASAP so that if it doesn't work, I can try it again but with bigger doses. I'm so thankful that ONE of my prayers have been answered and this has the potential to save my life...even if I am the only statistic for Hodgkin's Lymphoma. I will fight this cancer to the bitter end and will do whatever it takes to cure myself. I'm very optimistic and going into this procedure with a positive outlook...but it still doesn't fix the fear that I have going through it all.

I'm going to feel very scared, alone, and worried everyday of this procedure. I expect I will be writing in here daily while I'm staying in the hospital. I may even do live videos (if I don't look too horrendous). I hope my friends and family will keep in touch during those days, as I will most likely be alone in the hospital through a good part of it. The one thought that is pushing me forward is "well...hopefully this time next month, I may have found an answer, and it will have been worth the pain"....I hope it's true. So....