Day 63 - Home Sweet Home

Hey everyone!! I'm so sorry...I had meant to post an update much sooner than this, but things were constantly getting in the way. For one, I'm still experiencing headaches at an alarming rate. I'm hoping that will die down as the days go on as it's medication related and I discontinued a pill that caused the horrible pains just 3 days ago. Another reason I've been delayed in writing up a blogpost was due to the agonizing pain of a blood clot that formed in my jugular vein which thankfully I caught in time. I was dealing with fevers and couldn't sleep since just the slightest touch to my neck was excruciating. At first, the doctors thought it was simply muscle related, but after doing an ultrasound they immediately found the clot and started me on a blood thinner injection I have to do twice a day for the next five weeks. This all happened just days leading up to my discharge.

Discharge day was last Thursday and what I was anticipating to be a smooth and easy day, turned out to be anything but. I started off with getting my catheter taken out. It was quick and easy, but it definitely stung like a bee sting thanks to all the alcohol prep and the fact that they had to put pressure on the spot of my neck where my clot is as they took it out....not pleasant. Then I came back to the cancer clinic to get my lab results back only to find out that I needed a blood transfusion. They were ready to access my chemo port but after several attempts poking me in the chest over an hour, they didn't have any luck. My port hasn't been used in about 2 months (it had been covered by the bandaging of the catheter) and it was quite tender being in the same spot as where my catheter had just been. In the end, I had to get a lovely jab in the arm with a huge IV. Again...not fun.

Finally, the day came to an end, and I was able to leave Baltimore the next morning. Part of me was relieved to finally be away from the constant appointments and being stuck in the tiny apartment for most of the day. Groundhog Day finally came to an end!! I'm happy to be around trees and greenery again instead of the cold grey buildings of the city. I love city life, don't get me wrong...it was just not ideal being in Baltimore of all cities. Still, I can't help but count my blessings that I was able to get such great care from Johns Hopkins...I can't recommend a better cancer center.

I'm taking things very slowly though as I am trying to readjust being back home. On the first day back, I managed to pull muscles in my legs, because I wasn't used to climbing 2 flights of stairs over and over while unpacking. Whoops. Now that my legs are recuperating, I'm looking forward to what the summer has in store for me. I'm taking a summer course starting next month and I plan to slowly build back my endurance so I can start working out again. It's still too early to go back to work though and I've been told I won't have my old energy back until probably next year. That's ok...if there's one thing cancer has seriously taught me, it's patience and just taking things one day at a time.

So, once a week for the next four weeks, I will be reporting to follow up appointments....and then once every other week following that for the next six months. At the end of discharge day, I got the results of my first CT scan which showed that I'm still in the clear and that there are no signs of recurrence (something that would be very rare at this early stage). Hopefully, it will last. If I make it to the one year mark, I'll be in a generally safe place...even better if I make it to 5 years with no signs of cancer. However, if I relapse between now and March 20th of next year, there's really nothing left for me....but I feel confident that all will be well. There's nothing I can do now but wait for the next scan. Only time will tell if the transplant worked. Time...something I hope to have much more of. There's gotta be a reason why I've made it this far and defied the odds.

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.

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.

Sick and Tired of Being Sick and Tired

I must apologize for the brief break I needed to take from my blog. After receiving the news last month about my transplant being postponed indefinitely (or until I get back into remission), I had trouble accepting the setback and needed to rekindle my flame of strength going forward. The first round of chemo since I came back from Europe was rough seeing as I wasn't mentally prepared for it. Not only was it mentally draining, but physically it made me very weak and for my first off-chemo week I became very sick with a nasty cold.

By the time I started feeling somewhat better, I went in for my second round of chemo. This round wasn't too bad...mainly because I celebrated my 25th birthday (which I wasn't originally planning on doing at home) and had the perfect distraction of decorating the house for Halloween...even though we hardly got any trick-or-treaters. The much-needed distraction started to pick up my spirits, and so I decided to call my oncologist to set up the "Take Two" PET-scan. However, the response was not what I was anticipating at all.

My oncologist started asking me the usual questions..."How are you feeling?"...."Have you noticed any new lumps?"...etc. I told him that everything was the same as usual and that nothing new had shown up. Besides the little hiccup of a cold and the usual fatigue, I felt ready to take on the PET scan and get the show on the road. Then after a brief pause on the phone, he said, "I think it would be best if we proceed with one more round of chemotherapy."

I wanted to throw the cell phone across the room. He explained that right now he's very optimistic about how I'm responding to the chemotherapy but that Johns Hopkins is very uncertain about moving forward, in fear that I am becoming immune to the treatment. He thinks that if I were to proceed with the PET scan now, it wouldn't be convincing enough to sway them otherwise. So he suggested that I do one more round (another 2 treatments of chemotherapy) and then set the PET scan for the 28th of November. 

Knowing and trusting my oncologist 100%, I agreed to proceed this way even at the risk of weakening my resolve. So instead of preparing for a scan this week, I'm stuck at home once again recovering from the fatigue plus the additional side effects from the flu shot I got at the same time as chemo this past Friday.

I hate feeling bored and useless. I hate this constant lingering around and waiting for a finish line that's only pushed back further and further away. I have no regrets, but the circumstances are not ideal. I'm incredibly grateful for the support system I have between family and friends, but I feel like I'm missing something. Once again I feel like I'm trapped inside a glass box watching my friends move forward to bigger and greater things...jobs, weddings, families, etc...and I'm just stuck. With the lack of energy, I'm not exactly able to go back to work. Going back to school would be very risky...practically impossible if I somehow go into transplant at the end of the year. So all I can do is wait.

If there's one thing I've definitely learned these last few days...it's that I'm sick and tired of being sick and tired. So I've decided to focus on the little victories of every day. I've been studying and perfecting my French. I've even resorted to taking free (non-credit) online courses provided by Yale to prepare for the day I (hopefully) do go back to finish school. I try to maintain my strength by doing small exercise routines every day. I'm trying to read more, and I'm catching up on missed movies and shows. Whenever I have the strength, I try to go out and do something productive...whether it's going grocery shopping or hanging out with a friend. They are small goals but I'll do whatever I can to pass the time. It's the only way to feel close to normal.

"Life doesn't discriminate between the sinners and the saints; it takes and it takes. And we keep living anyway; we rise and we fall and we break and we make our mistakes. And if there's a reason I'm still alive when so many have died then I'm willing to wait for it." 

                                                ---"Wait For It" by Lin-Manuel Miranda

I Was Prepared

Today's post is going to be a short one as I'm still really upset by this recent bit of news. Friday, my oncologist scheduled me for a last minute PET scan to see if I was still ready to go into transplant in a week. I just got the results back today. Apparently, there was some small amount of growth that occurred during my travels. It's small but enough for my transplant doctor to deem it unsafe to go through with transplant just yet. So my oncologist suggests doing two more rounds of chemotherapy (6 weeks) and trying another PET scan after that. If I respond to treatment, I will see if a transplant is still an option late November. If for some reason I don't respond and my body has once again become immune to treatment, then I will have one last option which is the clinical trial that I was looking into at the beginning of the year.

I'm very distressed and upset with this. I have no regrets about traveling because it put me in the right frame of mind going into a transplant; I needed it mentally. I hadn't seen family in over 10 years. However, I'm upset with this stupid cancer because I was prepared for the next step. I was ready to fight. I was ready. This ruins all my plans. I feel bad because I also started enlisting help from friends and family to be caregivers during the remainder of the year. I was about to start packing. I knew what was going to happen and was ready. But after missing only one treatment, everything is put on hold...again.

I will keep writing here...but I think I need time to process this bit of horrible news.

Just Around The Corner

Hey everyone!! I'm back from my travels. Needless to say, it was much needed!! Not only did I get to see my family in France, but I also got to see the sites in Scotland that I had been dying to see for years now. I came back October 1st and although I was sad to return home, I landed at the airport with a confident and ready mind.

The first 24 hours were a bit shaky, I'll admit. I didn't adjust well to jetlag, and I had to postpone my chemo treatment a few days allowing me to recuperate. I also woke up the first morning to another US tragedy, the Las Vegas shooting...which didn't help my emotional composure. It was a rather horrible "welcome home". However, by the time Thursday came around, I was feeling better and took my first pre-transplant steps. I completed (hopefully) my last chemo treatment, and immediately following that, I buzzed off what little hair growth I had accumulated over the last few months. Surprisingly, I actually liked seeing my hair short again. I think it's simply a relief that there's one less thing for me to worry about.

Then later that night, I got a call from my oncologist. He told me that he had managed to schedule me in for a last minute PET scan for the following evening to check and make sure there had been no growth during my travels...though he seems pretty confident that all will be well. I was actually excited and couldn't wait to start!

The next morning, just before my scheduled scan, I received another call. This time from the transplant coordinator at Johns Hopkins. I told her that if all goes well with the PET scan that I would be ready to proceed with the transplant. I may still be very worried about what lies ahead, which is normal when facing the unknown, but I'm in a positive state of mind and just want it to be over with. "The sooner the better!" I thought....until the coordinator told me how soon and the slight change of plans.

She told me that she already has a transplant date set if everything goes according to plan. October 17th is when I go in to get a catheter put into my chest. This will be the first big challenge for me as the days leading up will be merely preparatory scans, tests, and consultations. The following 5 days after the catheter surgery will be very heavy doses of chemotherapy. I will be losing all of my hair during this time and will be very sick and weak. This doesn't trouble me too much as I'm already used to chemo sickness and hardly have any hair to worry about now. After the 5 days of chemo is the 20-minute full body radiation. This is the scariest part out of the whole ordeal as it is a major phobia of mine and I worry about the long-term effects. However, I have been told it is a very low dose and I will experience hardly any reactions besides fatigue. I will also be pre-medicated with anti-anxiety meds which should help me endure it. So...yay?

The day after radiation is my so-called new "birthday"...transplant day.

My sister, who will be my donor, will be giving some of her bone marrow cells to me that day. I don't really know what to expect, but it's probably not going to be as big of a deal as people make it out to be. After that is the long recovery and wait period to see if the transplant works.

Initially, I was told that the first month I would be inpatient within the hospital. However, less than two weeks before this scheduled transplant, the coordinator tells me that I will now be outpatient for the entire process. This means that I will be in a separate housing unit across the street from the hospital from the 17th of October until the end of the year. This also means I have to scramble to find last-minute caregivers. Thankfully two angels have stepped up to help me during the month of October. Now I just need to figure out what to do with months November and December. My mother has already offered to cover as much time as she can (especially during the holidays since I don't expect anyone to be free during that time). I have also created a calendar for anyone of my friends/family to volunteer their time to be a caregiver (let me know if you are interested).

With all that being said, I would like to take this moment to thank everyone who donated to my fundraiser; granting me the wish to see my family in France and to see where my family comes from in Scotland. It was an experience I will never forget, and I'm incredibly grateful for it. This trip was a much-needed escape from everything that has happened and the best way for me to approach what will most likely be the riskiest moment of my life. I thank all of you who contributed, from the bottom of my heart! You made me the happiest I have been in a long while.

I would also like to take this time to show my appreciation to you all. I'd like to thank everyone who has supported me these last two years, who have stayed in touch with me or have been reading this little blog of mine to keep up to date. I like to think of this blog as not only an outlet for what I'm experiencing but also as a way to either relate or understand what people dealing with cancer might have to go through. It hasn't been easy...and the hardest part is just around the corner. I promise I will continue to write my experiences while I'm in Baltimore these next few months.

I will most likely be getting my PET scan results in the next few days and will write more as the time to transplant approaches!