Day 4 - Needa

I hesitated writing this blogpost simply because I'm struggling to find the words to talk about my dear friend Needa. But after sleeping on it, and realizing that the [metaphorical] lump in my throat isn't going away, I decided to dedicate a blogpost to her.

I met Needa at one of the lowest moments of my life. I had just found a new lump on my neck right after Christmas 2016 and I eagerly looked forward to attending my bi-weekly cancer support group at the start of the new year. It was obvious that the 3rd chemo I tried didn't work and I was starting to run low on options. So I went to support group on January 12 with a very heavy heart...but because Needa entered my life that day, I left my group with a friend.

Needa had triple negative breast cancer, a rare and aggressive form, but she could have easily fooled anyone. Not just because of her AMAZING wigs, but because she had the best attitude about it. She lit up the support group session with her infectious humour and her never-ending love for everyone there. She used to make fun of certain (non-cancer) aches and pains she was experiencing such as chin cancer when she hurt her chin or ankle cancer when she would twist it. I remember during that session I felt like my life was slipping away because everyone around me was getting married, graduating, moving on with their lives, etc. But Needa pulled me aside after group and made me realize that just because I have limitations with this cancer, doesn't mean I have to surrender anything to it. She pointed out that I fought for fertility treatment to preserve the possibility for a future family. She said, "Why stop there, Maddie? Fuck cancer! You've gotta live your life!" and then she asked if we could hang out sometime soon. It was the first friend I had made in support group who was single like me and knew the ropes that I was having to climb socially.

Sadly there were only two times she and I actually hung out (outside of group) due to our schedules this last year. The first was when our dear friend from group, Katie, arranged to have some of us go out and party in Rockville. Since I didn't have a mode of transportation there and back, Katie took me there and Needa drove me home. I remember laughing everytime we entered a wooded area or passed a farm because Needa kept saying "Geez Maddie! Where the hell do you live??" It was a long drive with no talk of cancer, but instead full of fun and laughter. That night, I didn't even feel like a cancer patient...I felt like me...because of her.

From that day on, I felt like I could go to her for advice on anything. We had a bond. Like the older sister I never had. She taught me so much about confidence and inspired me every time I saw her. Whenever I was low, she raised me up. A year after I met her, this past January, I was in the hospital for my final chemo. She came out to visit me and gave me a little present; Deadpool socks and a bag of Cheetos (she LOVED Cheetos). She was going to take me home when I was discharged (as were the instructions from the nurse)...but after grabbing my bags and running out of the hospital we hopped in her car and she smuggled me into our support group last minute. It's one of my greatest memories because she made me feel like my age and not my cancer. It also ended up being the last time I ever saw her.

Shortly after that, I found out that my chemo worked and I was preparing for a bone marrow transplant. All the while, I found out that Needa received the lower end of the stick. Her cancer came back, this time in the lungs, and she got pneumonia. While my health got stronger her's declined. Even after I messaged her to keep her head up as she tried to do radiation and chemo all over again, she was still rooting me on and promised to take me to the next Deadpool movie when I got out of transplant in May. But yesterday, I found out it will never happen. As Katie pulled up to my apartment in Baltimore to caregive for me, we both got the news that Needa passed away due to respiratory failure. We stood hugging on the sidewalk, crying in each other's arms. It didn't feel real. It still doesn't.

I almost wanted to deny it. How could someone so pure and full of joy be taken so quickly like that? She had her whole life ahead of her. My sadness quickly turned to anger. I realized this battle was actually a war and this cursed beast called cancer has claimed the soul of one of the strongest fighters I have ever known. Cancer doesn't discriminate...it feeds on the innocent and feasts on the best of us. And if there was one thing Needa taught me best, it was to never let cancer cast a shadow on your life. Live your life as best you can...have as much fun as you can....laugh....and be proud of the life you lead. She taught me to accept my life with its flaws but to see the beauty and potential there is. She gave me hope.

Needa, I only knew you for little over a year but I feel like I knew you a lifetime. That's how I know you were a good friend. And for your sake, I hope I can fight my own cancer back so I can live to see the day when this cursed beast finds its downfall. I hope to see justice for you. And yet...part of me still hopes that this is all just a nightmare and that I will wake up from it, see you standing by the door with the car keys to say "well...are you ready to go to support group?" ....Rest easy girlfriend, and know I'll never EVER forget you.

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!!!

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!!