Day 0 - A New Birthday

The last post I made on here was on Sunday, the day before my radiation appointment. There has been sooooo much that has happened to me in the last few days so I will try to break it down and condense as much as I can. So get ready for a whirlwind of events.

Radiation day crept up on me and left me no time to really mentally prepare myself. I tried so very hard to put up a brave front and felt so weak having to ask the nurse to up my anti-anxiety medication before I went down to the radiation oncology department. As every minute went by, my mind was racing faster and my blood pressure was naturally a bit higher that day. Ever since I was about 10 years old I always had this fear of radiation. X-rays and a few scans here and there were ok but full-on radiation exposure creeps me out. Something about the idea that invisible rays damaging the body is just so unsettling to me. For years I kept reassuring myself that I wouldn't need radiation therapy unless I was much older and ended up getting breast cancer, which seems to run in my family. But that was then...and this is now...and there's no transplant without a dose of total body radiation. So I bit the bullet. 

The machine was monstrous compared to my tiny 5'2'' self. 

It was intimidating as I climbed up onto the stretcher and laid down on my side. I asked to have some AC/DC music playing to get me going, but not even that could tune out the thoughts of worry screaming in my mind. I gripped my pillow, shut my eyes tight, and stayed on that stretcher for 30 minutes of exposure. It's true I didn't feel anything...just like taking a long X-ray. It's the fact that I couldn't feel the destruction that made my mind go numb.

After radiation, I was in a mental low and didn't feel like doing very much besides getting to the next day. I felt drained and disturbed to think that these invisible rays were entering my body, destroying my bone marrow and potentially damaging my organs in the long run. I've been reassured a thousand times that there are many safety checks and that the amount is measured on the tech's computers. It also was a very low dose. And in the end, I did it. I faced my greatest phobia...and I pray I never do that again.

The next day came along...March 20th...the first day of spring. It was only fitting for it to be my transplant date. They call it my "new birthday"...although I still prefer my own around Halloween, thank you very much. Anyway, the day started off as any other morning; getting up, grabbing breakfast, and making the walk across the street to the transplant clinic. I wasn't anxious or concerned at all and was just happy that the day finally came. I had been told that the transplant would be anti-climatic...though for me, it ended up being anything but. When I got to the clinic I had my vitals checked and they hooked me up to some pre-meds. My sister was already in surgery getting her bone marrow harvested for me. I was waiting in absolute anticipation.

(Just for you Noelle)

It wasn't until around noon that I got the big red bag full of my sister's bone marrow cells. They hooked me up the same way they would with any IV and I watched as the cells slowly dripped into my catheter. About 15 minutes into the infusion, things started to feel a bit odd. I was actually in the middle of FaceTiming with one of my dear friends when something just didn't feel quite right. My face started to feel flushed and I started to feel queasy. Shortly after I ended my call I spiked a fever of 103.5, was painfully vomiting, and I was shaking uncontrollably. Even piling 6 warm blankets didn't do the trick to stop the shakes, so the nurse decided to give me a bit of morphine which not only stopped the shaking but made me pass out.

Next thing I know, I wake up to the nurse telling me that I successfully completed the transplant and that the reaction I had was most likely due to the fact that some of my sister's red blood cells were still latched onto the bone marrow in the IV pouch. Since my sister's blood type is B- and mine is O+, it was like receiving an incompatible blood transfusion. Thankfully the moment the transplant was done the shakes subsided altogether and my fever began to drop. Despite that, they still instructed that I stay overnight in the hospital for monitoring around the clock. It was a very long and exhausting day and night.

In the end, everything turned out ok. The transplant was completed and now the long 60-day wait begins to see if it actually worked. I have a good feeling it will and I am confident that there will be a happy ending to this battle. The worst, I believe, is behind me. It's Day 3 now and I am just so grateful for every additional day that passes by. As I'm typing this I'm receiving my last round of chemotherapy to suppress my immune system so that my sister's cells can thrive. My white blood cell count is already below 1 and there is no going back at this point. I know in my heart that I've made the right choice to take on this transplant. I just pray that I have minimal side effects down the road. I'll give another update soon, I promise!!

Groundhog Day

Hello from Baltimore!!!! Wait a minute...I've already done that. This week has been a very peculiar one for me. Every day has felt more and more like a duty rather than a cure. I wake up in the late morning and have brunch. I walk across the street and go to the transplant clinic. I go to the same station to get my vitals check and then report to a lounge chair to get my chemo. I'm there anywhere from 2 to 4 hours (depending on my blood counts) and then released. Then, I walk back across the street to the apartment I'm staying in. Finally, after a little bit of free-time, I have dinner, take my temperature, and go to sleep....only to do the whole thing all over again the next day. I'm literally living in a Groundhog Day scenario and will be doing this for the next two months.

As for an update on my treatment regimen, I have successfully completed the pre-transplant chemo, with today being my last day. 

Besides the minor queasiness, it was generally well tolerated and now I proceed to the next step...total body radiation.

My appointment is set for the afternoon and I'm seriously dreading every minute that passes by. I know all will be ok and it will be over in a matter of minutes...but that still doesn't diminish the phobia that has been growing from an early age. I've been told mixed messages from the nurses regarding getting some sort of anti-anxiety med, and I'm determined to take two Ativan should they choose not to give me anything (as I know one pill will not be enough to calm me down).

After this is the big day!!! Tuesday I get my transplant!!!

My wonderful sister will be donating some of her bone marrow to potentially save my life. In all honesty, though, my part is very anti-climatic. It's given to me in a giant IV bag and I probably won't notice any side effects until a few days after Day 0 (Tuesday). The Groundhog Day ritual will still continue as I keep reporting to the clinic every day for monitoring. There are even two days where I will be receiving post-transplant chemotherapy to suppress my own immune system, allowing my sister's bone marrow to take over. Otherwise...it's just waiting and watching to see if the transplant works. I pray it does as it's the only thing left for me.

Anyway...that's honestly about all that is new on my end. I would like to take this time though to thank all the people in my life who have not only supported me but have willingly offered to be there for me during this difficult time. Special thanks to my mom who still stood by me even though I was at my lowest on Tuesday, and an extra special thanks to my current caregiver, Linda who has taken extra good care of me and put up with my crazy randomness this past week. Haha! I love you all and thank you from the bottom of my heart!!!

It's Happening

I hardly know where to begin. I'm currently in the middle of a tornado of events, most of which are positive but shocking. I finished my second and most difficult chemo round about 2 weeks ago and did a repeat PET scan just to be sure of the previous results. I got the phone call just last night....the scan shows absolutely no cancer activity whatsoever!! My doctor was so excited for me on the phone and he told me that the transplant team over at Johns Hopkins was so siked to hear the news. They want me to prepare for a transplant set for March 16th!!!

So naturally this morning I got a phone call from the transplant coordinator to discuss what needs to be done. I've already had a dental exam last week which showed no need for any additional work, and once I get the paperwork done on Tuesday (stupid Presidents Day weekend) they will start setting up my appointments for next week!! She told me however, I need to start getting my caregivers organized so that I start getting 24/7 care starting March 7th....which is only a couple weeks away!!

Yup...this has definitely been me since I got the call.

All day I've been scrambling to get in touch with a few people who previously offered their assistance and I have a few days set...but still a lot of empty slots. I need to get 24/7 care for at least the first month of treatment (the second month, my mother is planning on taking unpaid leave to be there for me).

I know it's a lot to ask of my friends but any help is so appreciated!! It's going to be complicated as I'm working with a lot of people's work schedules. It's truly a stressful scramble, but I just need to keep reminding myself I still have time. I just hope it all works out...and I'm sure in the end it will.

I'm also a little on edge since I'm going to have to get another catheter put into my chest on the 9th and I'm already really kinda worried about that. When I had my chemo port put into my chest 2.5 years ago, not only was I completely awake and aware of everything, but it just wasn't a good experience at all; a bit traumatic to be honest. Hopefully, Johns Hopkins will be a little more considerate of my anxiety. I just really don't like the idea of having something else inserted into my chest...ugh. I'm trying to convince my mind that it'll be like Iron Man and his arc reactor. If he can be so chill with that, then I can be ok with this thing in my chest for 60 days.

I really shouldn't be worrying so much though...instead, I should be excited. I beat the odds! I've done what the doctors thought was impossible. I took the risk of chemo and ended up being on top with a chance of a temporary cure. I say temporary because most of the doctors believe that this transplant will only buy me time...possibly long enough until the next best cure comes along. The transplant alone is a major risk with a 1/3 possibility that I may not survive...but I'll take it the chance!! I've been fighting this for almost 3 years now...I'll be glad to finally be free.

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.