A Risk Well Taken

About 20 minutes ago I received a phone call...what may be the best phone call I've ever had the pleasure of taking. I immediately stopped what I was doing and answered, despite not knowing who it was. The soft, timid voice of my oncologist was on the other end of the line and asked to speak with me...a sense of urgency was detected. I knew right then and there it was regarding my recent PET scan. He sounded as if he had little time to take the call but I'm so glad he did...because it was the best news I could have hoped for.

"The scan results show an almost complete response, with very little cancer activity detected. This is very surprising as you have only had one treatment and the scan having been done only a week after. I'm moving your next chemo date up to this Monday and I need you to go get your bloodwork done sometime this weekend. I don't even think it's necessary for you to repeat the scan as I'm sure you will be in a remission following one more cycle of this chemo. I will reach out to the transplant team at Johns Hopkins to see if you can get a transplant within the next few weeks. Congratulations!"

I was at a loss for words and only managed to utter a thank you before the conversation ended. I took a minute to process before staggering up the two flights of stairs to tell my dad and sister the news. The transplant is a go!!!! The pains of this chemo and the risk I took were worth it entirely!! I received news that many people thought would never happen. The odds weren't even in my favour and still, I was determined to seek the impossible! And I succeeded!

Needless to say, my faith has been restored through this news, and I'm so proud of myself for making the decision I did. It was all worth it in the end. All of it! Now I have to scramble yet again to find caregivers and rush to get the necessary appointments needed to proceed. I'm potentially looking at a transplant this next month so I have to act fast. But for today...I intend on celebrating the news and letting it sink in...I might just have a new lease on life.

PET Prep

I SURVIVED!!!!! 

I've made it over the first hurdle of this ICE chemotherapy. I apologize for not typing as much during that ordeal, but I was not kidding in my last post when I said I was "sleeping the days away". Besides the occasional visits from my friends and family, I was so drugged up on Benadryl and other things that I slept through it entirely. Most of the hospital trip was a blur, and I didn't feel comfortable posting something in that state.

Even the return home was unbearably tiring. The first two days I literally spent in bed. Every part of my body ached, and I had absolutely no energy to do just about anything. Simply going up a flight of stairs was enough to cause my head to spin. The nausea was under control thanks to the two strong anti-nausea meds I was living off of. However, I hear that the next round will be harder, as the chemo naturally builds up over time...and I still have two cycles waiting for me.

Along with the anti-nausea meds, I'm back to giving myself daily injections. Unlike the fertility treatment shots I was on two years ago, these are mainly to keep my white blood cell count up. My immune system is completely shot down with this chemotherapy, and to prevent hospitalization, I need to take a shot every night. Thankfully there isn't any bloating and I haven't experienced any changes in hormones. I also get away with any pain by applying an ice cube to the spot just before the pinch...so I really shouldn't complain...but it's become such a chore.

So here I am recovering from the aches and pains...which is no small feat. To celebrate this moment, my doctor scheduled a PET scan to see how I'm responding to treatment. I am not going to jinx anything on here, but I will say this...I have a very good feeling about the upcoming results. I can feel it...

Then this morning while doing the necessary labs for the scan tomorrow, I realized...I never did explain what the PET scan process is to you all who have never had one. Let me enlighten you...it's quite the process. A PET scan is a positron emission tomography which uses nuclear medicine to capture full body images. As I said I went to do "necessary labs" this morning...necessary as in a pregnancy test. You can't undergo something with THAT much radiation if you have any chance of being pregnant. Even though I'm on a shot that makes pregnancy almost impossible, I still have to be tested. Naturally, my social life (or lack of one) has become an ongoing joke between me and the radiologists.

Tomorrow I have to report to the radiology department after fasting all morning and afternoon (my appointment is late in the day...yay...). Once I'm called back and vitals are taken, I'm led to a tiny room with a reclining chair. The technician then proceeds to prick my finger to test my blood sugar. If it's too high then I can't proceed with the scan, but that has never happened (and hopefully never will). Then they set up a temporary IV and leave the room to get the radioactive dye used for the scan. The dye comes in a metal casing...almost like it's top secret or something. I always joke that it's going to give me super powers for the day...because you know they've heard that joke a million times. Haha!

Once it's injected, the technician reclines my chair, turns off the lights, and instructs me to take an hour nap. I'm not allowed to talk, read, listen to music, etc...nothing stimulating so the dye can circulate in my body without any issue. Once the hour is up I'm told to use the restroom and then report to the CT machine. The scan itself takes about 30 minutes to do and they capture images from the head down. The images not only show what your organs look like but how they are functioning, and any cancerous activity is easier to see under this scan. Unfortunately, the scan cannot be repeated too frequently due to the amount of radiation involved...so it may be another month until I can get it again. Hopefully, by that time, I might be looking forward to proceeding with a transplant come March! You never know, right?

So that's the gist of what will happen tomorrow. I have a very good feeling about this scan, and I'm SUPER eager to see what the results are. Despite how toxic and harsh this chemo is, something about it just feels right...like it's meant to be. I just hope I'm right and that I've made the right decision. I'll let you know in the next few days when the results are in.

Sleeping The Days Away

Happy New Year everyone! It's been a couple days since I've written in here so I thought I'd give a small update while my eyes are open. I'm fighting so hard just to stay awake to type this. My sleep schedule is so messed up lately and it's mainly due to cancer and this chemo regimen. I'm typing in my hospital bed while staring out the window to the view of rush hour traffic. Every part of my body is screaming for me to go to sleep, and I will...but first I want to let everyone know what's going on.

Two days ago I got the call from my insurance telling me I have the ok to get treatment at a nearby hospital. They reserved a bed for me for Monday morning. Yesterday, my mom dropped me off before heading to work. She wanted to leave early as she would be facing not only traffic but an ice storm. I was in an unusually chipper mood most of the day. I took a tour of the floor I'm staying on and flipped through all the movies they have on demand. I did some connect the dots and a little bit of reading. But most of the day was spent resting.

Night time came along and the first drug was administered as soon as my blood work went through. I took a ton of pre-meds along with some Benadryl which made me super sleepy. I was completely out when a nurse came in very late at night telling me I needed to get an injection. I was so confused partly from the meds but also because I had no recollection that I needed such an injection in my stomach. The nurse told me I could refuse it but I wasn't going to turn down what my doctor said was protocol. I could barely keep my head up but managed to give the ok. Literally, the next thing I know I get a huge pinch in my stomach and I was once again knocked out.

Another haze of confusion happened around 4am when I was told I needed to have blood drawn. I was told they couldn't take blood from my port like they did earlier in the day and that they needed to draw blood from my arm. So I started rolling up my right arm when they said it NEEDED to be my left since I had an IV in my right arm. I kept trying to tell them I had nothing in my arms and that my right arm was the easy access. They kept insisting I get it in my left arm. So instead of fighting it, I decided to roll up my left arm, thinking it might put the matter to rest and me along with it. One more pinch and I was falling back to sleep again.

Next thing I know, I'm woken up again at around 5:30 am to take a pill. This time I had absolutely no recollection of it. The only reason I know this happened was because the nurse told me it happened. So bizarre. All morning and afternoon long I've been trying to catch up on sleep. I'm so sleepy and bored here. The food isn't too bad but my appetite has been really bad these past few weeks. I've also lost 10 pounds in almost 2 weeks.

Well, I'm already starting on my second drug for the day. The next one is a 24-hour drip and if I don't have any reactions then hopefully this chemo will be smooth sailing...hopefully. I think I'm gonna try to sleep some more and type again later when I'm awake enough sound coherent. I'll be in the hospital until either Friday evening or Saturday morning...that is if everything goes well. I'm sure I'll have more to talk about as the days go on. Thank you all for your support and stay tuned for any updates!!

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.