Reflections And Moving Forward

Today is New Years Eve 2017. Today is also a Sunday. And today happens to be the day when my oncologist decided to give me a belated Christmas present...my last chemo start date!!!!

He said that even though the hospital has openings tomorrow, he wants me to prepare to be admitted on the 8th. One reason for this is because the hospital is planning on being super busy tomorrow, and he wants me to have the best monitoring possible, since I have a track record of having adverse reactions to new chemos...like not being able to breathe (which is the scariest thing EVER). It's probably best I have as much help as possible going into this.

Another reason for the one week delay is he has already scheduled my next PET scan for the earliest possible date (January 17th in the late afternoon...fun). He wanted me to have this PET scan shortly after the first cycle of chemo to see how quickly I respond to the chemo (the quicker the better), and also as a start point to compare with a PET scan after my second or third cycle. So as the appointments stand at the moment, I'm looking at being admitted next Monday on the 8th and if all goes well, I'll be discharged on the 10th, followed by 2-3 weeks off before I go in again for the second cycle.

In a way I'm a little pleased that I have a week to prepare myself, as my preparation is mainly buzzing my hair super short again, since I've been told I will most definitely be losing my hair immediately after starting this chemo. I plan to buzz it Wednesday, but I don't even really care about the hair loss factor anymore. The only priority I have with this treatment is that it works. It's a long shot but I just have a good feeling about this. I just hope I'm right. And if all goes well, I can proceed to transplant immediately afterwards. This new year is the beginning of the end.

Looking back on this past year is honestly one I'm very proud of. Despite getting the worst news at the beginning of the year, thinking I had run out of options, a miracle happened. My body proved that it can still respond to chemo (let alone a chemo that was only supposed to keep me stable, nothing more). I also felt the closest I was to being normal. The day after I received the horrible news in January, I marched with millions of women around the world for The Women's March. I made many new friends this year. I took non-credit courses, because I missed being away from school and wanted to learn more for the sake of learning. I also travelled EXTENSIVELY...the Caribbean, UK, Europe...all because of the kindness and love of others. Dreams came true when I was able to see my family in France after over 10 years. And even though I came back from my travels to once again bad news, I found both my faith and hope grow. This was truly the year I LIVED...and I wouldn't change anything about it. All I can do is move forward to whatever the future has in store. I feel ready and charged to take on this chemo and am whole-heartedly praying for a transplant in my future. So here's to 2017 and may the new year bring us hope and joy!! Happy New Year!!!

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.