The Beginning of the End

Hello from Baltimore!!! 

I've finally made it to the start of transplant!! On Monday I packed the car with all my comfy clothes, activities, and even my ukulele for the long stay at Johns Hopkins. My mom and I stayed in a hotel the first night since I had to wake up super early for my first procedure, and I couldn't check into my apartment until Wednesday. I took advantage of the hotel's pool and did a few laps since I was told I wouldn't be able to swim for several months. My mother also treated me out to a restaurant that serves all-you-can-eat meat since I was told any meat that I have for the rest of the treatment needs to be cooked well done (I'm not a fan of that). It was the calm before the storm and I definitely enjoyed every minute of it.

Tuesday rolled around and besides radiation day, it was a day I was absolutely dreading. I went to Johns Hopkins early in the morning to get a Hickman catheter placed in my chest. I was nervous because 2 years ago when I had my chemo port implanted, they had me on twilight sedation...and for some reason, it didn't work which made the procedure incredibly traumatic. So I was very tense going into this one especially since this catheter was going to be partially sticking out, and cosmetically, I didn't like the fact that I would be carving up my body even more.

Thankfully, the doctor who was overseeing the procedure was absolutely wonderful. Not only was he from the same area I'm from (which is out in the middle of nowhere), but he seemed to really understand what I was going through. He talked me through everything and was incredibly reassuring. And sure enough, the moment the twilight sedation hit me, I was out. Slept like a baby...and I was so incredibly happy to wake up to the doctor saying "it's all done!" that I had tears of joy. Not only did I not realize anything going on but they decided to do it on the same side at my chemo port meaning fewer scars. I'd tell you what happened after that but I honestly have no recollection of anything that happened besides waking up in bed at the hotel again. Crazy.

Anyway, the following day was Wednesday...moving day!!! More importantly CHEMO DAY!!!! At around noon I checked into my first appointment in the transplant clinic (known as the IPOP...no idea what that stands for yet). I quickly learned to appreciate this catheter since they do all the bloodwork and chemo through it. I will never be pinched again while I have it in...thank goodness, my veins can take a rest. Once the bloodwork came back all clear they hung up my chemo bags on the IV and got started. The chemo was quite honestly so much easier than I thought it would be. I mean...I've already done several over the last couple years so I'm kind of used to it by now. I even felt totally fine when I was finished and walked out of there proud.

It wasn't until after chemo that the whirlwind of events happened. First I had to check into my apartment. After figuring out the parking and filling out the paperwork, my mom, my amazing caregiver Linda, and I drove down the street to the closest supermarket to pick up some food to stock the kitchen. It was really confusing figuring out what to buy since I may have an appetite now but later on I know I probably won't. After zooming up and down the aisles we finally purchased some meals and went back to unload EVERYTHING out of the car. I lost track how many trips I made...and it didn't help that I'm on the top floor either haha!

Needless to say, I slept very soundly last night. Today was Chemo Day 2 out of 5 and all went well again. Chemo lasts for about 2.5 hours so it's not too bad. Here's hoping the rest of the week goes as smoothly. Transplant day is this coming up Tuesday and I can't wait!

Yes...I really miss my pug.

Fifteen Minutes Of Pure Terror

This morning I went in for my final pre-transplant appointment, where I got my radiation measurements done, as well as attending a class with one of my nurses to go over the dos and don'ts for these upcoming three months. It started out a little rough as I was once again reminded of the dreaded radiation appointment to come. Fortunately the doctor I saw today was very reassuring and told me not only will I be on strong anti-anxiety meds, but I can play some music during the half-hour session to make things more comfortable. After a teary moment, I seemed to come to terms with it especially since it's only one day and apparently a very low dose of radiation.

Next was the caregiver class that my mom and I attended. We went over my schedule as well as how to take care of my catheter which I will get on Tuesday. Everything is approaching so soon and although I'm prepared, I'm still pretty anxious...mainly because I just want it done and over with. It all seems to be coming together. So to celebrate the pre-transplant testing being done, my mom took me out to grab some dinner. All was well until we arrived at the restaurant.

Just as I sat down at a booth, my phone was going off. I answered the phone to my sister in a panic. My sister, as I've mentioned before, is my donor; a complete match for this bone marrow treatment. So the moment I heard her voice I knew something was up...and the words I heard out of her mouth sent my own mind into panic mode. "They are postponing the transplant!! They need me to do more bloodwork at the last minute and therefore the transplant has been postponed a week!"

My first thought was "No...No....Absolutely not...NO!" So after reassuring my sister that this will be sorted, I called the coordinator (who happened to also leave me a voicemail on my phone with the same notification). My hands were shaking as I was waiting for her to pick up. It's a bit of a blur recalling what I said to the lady when she answered, but I know I told her off. I said it was incredibly unacceptable since I not only scheduled everything with caregivers and agendas, but my life is literally on the line and I cannot push the transplant back any further than the set date. For example, if I did, I would have to redo the PET scan which will most likely show some minor growth happening (since I haven't had chemo in over a month), and that would mean I'm no longer eligible for transplant. So the coordinator told me that she would make some calls to see what she can arrange and get back to me.

Fifteen minutes passed in sheer terror...I could sense I was already on the verge of a panic attack. I'd come so close and so far...there was no way I could put off the finish line now. Those fifteen minutes were not only the longest in my life but the scariest. It actually put my phobia of radiation into perspective. One could even say God was testing me to see if I truly wanted to proceed with a transplant...and HELL YES I DID!

Finally, I got a call from the coordinator telling me that although the phlebotomy station that usually does bloodwork is closed for the weekend, she managed to persuade the transplant clinic to squeeze my sister in to have blood drawn bright and early tomorrow morning. This means the bloodwork results will be back JUST IN TIME for my first treatment next week. I was so relieved that I don't even remember how the conversation ended...all I could think of was "I cannot believe this just happened..."

So after a good meal and a stop off at the pharmacy to pick up a giant box of transplant supplies (literally a box)...I managed to get home with a sense of relief. My mind is a little more relaxed, but my heart is still racing. That could have been the worst news ever if they hadn't figured out a solution and postponed the transplant. Hopefully, with a good night's rest, the shock will subside. Onwards and upwards, right?

On The Doorstep Of Transplant

At the start of last year, I honestly never thought I would make it to this point. So many times I was told that the odds were against me, that my cancer was considered incurable, and twice I was given a 5-year life expectancy...it would have been insanely easy to give up. There were moments where I thought I was going to, and that an early death was inevitable. There were even moments where my body was visibly breaking down and I felt like I was already at the end of the road. However, after making a very bold and daring move, I've received a miracle...an unlikely remission and the potential for a cure. After two and a half years of 4 chemotherapies and one immunotherapy, I'm at the doorstep of the final round...bone marrow transplant.

Tomorrow is my last pre-transplant appointment where I will be told one final time what to expect, what to do, and what not to do during the next 3 months. I start the transplant process on the 13th when I get a catheter put into my chest. The following 5 days after that I will be receiving chemotherapy to completely diminish my white blood cell count, followed by one day of total body radiation to deplete my bone marrow and immune system altogether. Then finally, the 20th of March...transplant day. My sister will be coming in to donate her bone marrow and give it to me the same day. The purpose of this transplant is to obtain a new immune system that will recognize my cancer as foreign and destroy it.

Yes I am imagining my sister's immune system as an army of daleks...

Afterwards is the start of a long recovery, hopefully. I will be staying across the street from the hospital and reporting there every day to be monitored for at least 60 days. This is to make sure I don't get sick and to also prevent any side effects from my sister's immune system taking over (there is the possibility of her immune system seeing healthy parts of my body as foreign and can try to destroy it...fun). I will be writing in here about any changes, updates, and experiences I might encounter during my stay in Baltimore.

The end result is the part that is entirely up in the air. I've been told that my odds are anywhere between 30-50% that I will be completely cured...however, my transplant doctor seems very optimistic as I've been shown to defy the odds before. I also have a complete match with my sister so I have a chance of a better outcome. However, I've also been warned that if the transplant doesn't work or the cancer comes back within a year from the 20th, there is really nothing left for me in terms of treatment. I've currently exhausted all possible chemotherapies and immunotherapy treatments. Now, if I relapse within 1-5 years then there is the possibility of other treatments becoming available for me, especially clinical trials. If I make it to the 5-year mark, the odds get better every year that I have been cured.

But no matter what happens, I am determined to fight to live. My wanting to go back to school and work only fuels this. It's going to be a very difficult 60 days, and the treatment I will be enduring leading up to transplant is horrifying to think of. Radiation, for instance, has been a major phobia of mine since I first heard about it when I was a child. I know it's painless and non-invasive, but just the thought of destroying my body with something invisible while being aware of it is extremely unsettling. I also don't look forward to having a catheter sticking out of my chest and maintaining it for the duration of my stay in Baltimore. But if these things are necessary to live...then I have no choice but to put my faith in it and endure.

So I will spend these last couple days mentally preparing myself, listening to my "fight playlist", and spend as much time appreciating the small things. I look forward to bringing you all on my transplant journey as well, so stay tuned for more!! 

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!!