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!!

So I Almost Died...

This week started off as planned...and then started going south...and then into oblivion. I went to the gynecologist for my first out of three Lupron shots (thankfully I get it only once every 3 months). This is the hormonal therapy I will be taking leading up to the NIH trial that I wasn't ready for last month. I have already had this shot before to try and salvage any fertility during my first chemo treatment, so I already knew what to expect. It's an intramuscular shot that they normally give you in the butt. This time they tried to go up a little higher close to the side of my hip so my butt wouldn't hurt every time I had to sit down and drive somewhere. Still, about an hour after receiving the shot, my hip area was incredibly sore. I mean it's a BIG shot...no joke.

                                                   "I got shot in the buttocks"
Then to top off the pain in my hip, I've been dealing with increasing muscular lower back pains from God only knows what I did...something obviously stupid. Anyway this pain has been keeping me up at night and only happens when I'm sitting, resting, and sleeping. I've dealt with this EXACT same pain before when I had shoveled too much snow last year after giant blizzard, and when that happened the doctor gave me some pain meds and told me I had to wait it off. So after I did some routine bloodwork, I went upstairs to urgent care expecting the same thing. This time however I got a new person and she looked at my chart and told me that because she noticed I had cancer, she wanted to "rule things out". She wanted to have me do more bloodwork and a CT scan...it was 9:30pm. I was like OH HELL NO!!

I already felt uncomfortable doing any kind of scan, as I had already underwent a CT, PET, and MRI all in one week at NIH. That's A TON of radiation and I didn't have my doctors ok for this. I told her this and she kept insisting that she knew better and that it was the only way I'd get relief. Considering I was tired and had been waiting for her from 7pm to 9:30pm, I just wanted to get out of there. So she gave me minor pain meds (which didn't quite work all that well) and I bolted out of there.

Two days later I was scheduled for my first round of my 4th chemo treatment. The purpose of this chemo is to try to reduce any progression and any current tumors between now and when my clinical trial starts up. I had been given the choice of either chemo or radiation, and I chose this due to the fact that I'm not crazy about the idea of radiation as it's actually one of my phobias. I was also told that this chemo regimen was very similar to the first chemo I did (the only one to have the biggest response back in 2015) and was less toxic compared to it. So I figured it was definitely worth the shot and if after two rounds of it there was no improvement, I could switch to radiation where I'm pretty much guaranteed a chance at a temporary remission. So I went into this treatment not thinking much of it. Just get in and out...(granted the whole ordeal was supposed to take 3.5 hours).

After getting hooked up through my chemo port, and pre-meds were taken, they got the ball rolling. First drug took about an hour. No big deal as I spent that time watching a little bit of the news and doing connect the dots. Second drug was practically a breeze as it lasted only 10 minutes....boy do I wish all chemo treatments were that fast. Then all of a sudden I see them hooking me up to this big reddish-orange bag of what looked like freakin Fruit Punch!!

I was rather amused at it and watched as it took FOREVER for it to slowly go through the tubes up to my port. I actually was encouraging it as if watching a race since it was the last drug in the sequence and then I was homebound.

However what seemed like the fun drug turned out to be the drug from hell. Not even 5 minutes passed when all of a sudden my connect the dots were making more little dots all over the page. They were multiplying and I felt flushed. I looked up and started seeing stars and immediately pressed the help button and with my last full breath screamed for my nurse in desperation. This had happened before while taking a previous treatment...twice. So I knew the drill. Just keep trying to breathe, focus on the nurses as they took me off the drug and hook me up to an oxygen tank, and most importantly try not to panic. But then I started losing function of my body...my blood pressure jumped to the high 150's, my oxygen dropped to the mid 50's, my head started to want to pass out and everything was spinning...I wasn't getting enough air and I'm surprised I stayed conscious at all.

Then one of the nurses said "oh my god, look at her arms!"...and with all of my will power I managed to get my head up long enough to see it...the most disturbing skin mutation I had ever seen had appeared. My hands and arms started to form a splotchy bright purple rash under my top layer of skin. Apparently it was also on my face. Now if it had been some cool looking X-men superhero mutation I might be ok with it. Something like this:

                                                     Or like this:

But instead it looked like this but PURPLE all over my arms and both sides of my hands:

Almost immediately panic set in. The first thought was, "oh my god...I'm dying". Then when I started to recover from the oxygen mask my next thought was "oh my god...this isn't going away...it's permanent!". Just then the nurse took hold of my arm and was telling me that it was starting to fade away. In my hysterics, I couldn't see it for myself and I didn't believe her at first. It wasn't until about 5 minutes of my mixed crying and deep breathing that I noticed it was starting to slowly disappear. Then the thought processed changed to "I need this to work. I don't want to do radiation. Please tell me there is something that can be done." One of the doctors on site told me he got in touch with my oncologist, who was at a different clinic at the moment, and said he was going to give me a call back. He also said that if I didn't hear from him, then to call him back after 12:30 pm the next day. I still haven't heard from him and by the time I post this I'll be picking up the phone to call him.

I'm desperately hoping to hear that something can be done. I don't want to hear the word radiation. Not only that, I'm still incredibly traumatized by what happened and keep looking at my hands and arms every other hour to make sure they are the translucent pale skin they always look...bleh...stupid Irish genetics. Thankfully the only reaction I've been battling is fatigue...I basically spent the whole day sleeping yesterday when I got home. I don't know what today has in store for me in terms of plans or symptoms...but I'm going to try to remain as upbeat as possible. Wish me luck on my phone call...

UPDATE!!! My doctor told me that I will be continuing chemo treatment just not with the third drug. So I've still got a chance that it could work without having to kill myself or undergoing radiation. Yay. lol!! Your amazing.

Detox

Just figured I'd post a little blurb on here with an update. After my sob story last month, I had a lot to think about. Obviously.

As I stated before, I am NOT giving up and I'm going to keep fighting to the bitter end. So rest assured I'm not just kicking the bucket and watching the days go by. My oncologist told me that I'm supposed to be hearing from someone at NIH about the enrollment for a clinical trial. It's a trial called the "CAR T-cell Project"...no idea what it stands for, but I did get a brief low-down on the details when I met with them last fall. Essentially it's pretty easy. After taking self-injections for at least a week (yay...), I go in one day and have two catheters put in (one in each arm). Through one catheter they withdraw blood and it goes through some kind of machine where they separate the T-cells. They return the leftover blood through the other catheter. Then over 2 or 3 weeks, they genetically modify the cells to attack my cancer. They return my cells (I'm assuming through an IV) and see if it works after about a month. It sounds TOTALLY cool and super sci-fi but I think they are on to something.

While I'm waiting for that phone call from NIH, my doctor and I are trying to look into other clinics around the country if NIH can't take me asap. During this time I've also been trying to eat SUPER HEALTHY. Not just fruits and veggies but I've been looking into supplements and vitamins. I figured I'd give anything a try in order to slow any progression or see if I have any luck in decreasing any cells. I'm desperate for a miracle and I won't go down without a fight.

So I'm currently detoxing this week and boy is it a KILLER. My body is showing all the usual symptoms of detoxing (minor skin irritation, body aches, bloating, and general irritability) but it's draining on me. Don't get me wrong, I'm not overdoing it...I feel like it's necessary to cleanse after having all these toxins roaming in my body. It's just....I can't seem to stay focused. I even got angry at my blender while making a shake last night, because I was so frustrated that I couldn't figure out how to put the lid on. Waking up this morning I had one mission...to search for new motivations to keep me going.

First stop was Hot Topic and I got a new carrying bottle for my shakes...it's a Deadpool design. For those who live under a rock or don't care for superheros, Deadpool is an anti-super-hero who is a cancer survivor and finds humor in everything...my hero through this nightmare.

Then I made a stop for a new heating pad that was on sale at Bed Bath and Beyond, because last night when my back decided to scream for help, my heating pad conveniently disappeared. And once I finish this post, I'm going to be bold and write up a message to one of my idols. He has inspired me to write what's on my mind and in my heart, and his music has been my rock through this whole journey...I'm speaking of none other than the genius himself...Lin-Manuel Miranda. My letter to him will be posted here, in the impossible miracle that he may see it one day.

The Woes of Thanksgiving

Hey everyone...as I stated in my last post, I went a little MIA to just take some time for myself. I don't really know how well I succeeded in that since I'm still overwhelmed with the stress of cancer issues...but I'm gonna take a moment to catch you up. REWIND!!

In my last post I mentioned how I had breathing problems during my first treatment of this new immunotherapy and that the nurses decided that next time to prevent that from happening I would need to take some pre-meds...no problem. Well the next time I went to my appointment, I was all prepared, didn't even seem anxious about the last time...I just wanted to get in and out that day. They hooked me up, and after dealing with staff problems and blood test result problems, they started me on my pre-med followed by my treatment and then BAM!!!

 Last time it was a slow progression of not being able to breathe...this time it was quick and sudden. I felt like I was being strangled from my chest...I would breathe but no air would go into my lungs. I've never had issues with drowning but I guess that's what it feels like. As the nurses rushed over to stop my treatment, give me an emergency shot of steroids, and put an oxygen mask on, I started seeing stars. It was weirdly fascinating actually...my only thought (besides "I can't breathe") was "so this is what the paparazzi look like"...weird I know.

Eventually the nurses got my vitals back to normal and I could breathe easily on my own about 2 minutes later. We started the treatment again and then...no problems. It turns out the reason for my breathing problems was because they were administering it too quickly, and my body wasn't capable of adjusting to the drugs fast enough.
As they say, third times the charm...my next treatment came around and the nurses adjusted my infusion time so I am there for 2 hours COMPLETELY doped up on benadryl and other pre-meds just for precaution. It was smooth sailing and I never stopped breathing...instead I just slept through it. I'm just happy they didn't discontinue this treatment due to my body's reaction. It's not just the breathing problems now...I have MAJOR headaches the day after...so bad I can hardly move without feeling like my head will explode...thankfully that goes away after a day or so.

I've also noticed that my legs are feeling very fatigued due to my being anemic. I can't walk for very long without needing to sit down and take a breather...staircases are the death of me sometimes. Thankfully handicap parking comes in handy for those rough days where I just want to get in and out of the doctors office instead of hiking across an entire parking lot. It also comes in handy on days like Black Friday shopping...which my sister and I experimented on today. We had a lovely spot just waiting by the entrance to the mall, where so many other people were driving in circles to find a spot. Who knew cancer had perks? Haha!

Speaking of Thanksgiving, to be honest, I didn't really look forward to it. After Halloween, it's just been a crazy ride of bad news, unnecessary drama, and raised emotions. But the thing that really set me off was hearing some people complain about petty things the day before Thanksgiving...it really got under my skin this time.

Most people use this day to reflect on what they should be thankful for...but most people don't even realize the enormity of it all. Hell, I don't even need a single holiday every year to know how thankful I am to still be alive! I remind myself everyday and thank God for modern medicines and doctors. A lot of people like me would never make it this far in other countries. So many children go without food, drinkable water, medicine, and even proper education! And to hear people I love complain over something like sweet potatoes or point fingers at others and complain...that just really upsets me. I mean.....

So with Thanksgiving in the past, I urge you all to keep reminding yourselves how lucky you really are. I mean, you are simply lucky to even have internet access and read this silly post!! I'm not saying we all live plentiful lives...I know we all face our own trials and struggles...but there is ALWAYS something to be grateful for. And with that being said, thank you to everyone who has supported me through EVERYTHING...I love you all and I hope you had a happy holiday.

Mindfulness and Meditation

Uh oh...Maddie's gone MIA again. This time there's really no good explanation why besides just being lost in my thoughts and neglecting to document them. After my week in hell I kind of went into a "hibernation" of thoughts, fears, and seclusion from the world. There was a good week where I just didn't want to do anything. I kind of cut myself off from the world in order to process all the horrible news and doubts I got from the doctors and specialists. It was a blur really. I found it very hard to really take in everything, and guilt started creeping back into my life for having to get my siblings involved with my future transplant now. I felt horrible for my parents who had to take in the information and face the unknown. After the roller coaster of being told either I'm going to be cured or die...I just didn't know how to take this anymore. So I hit my shut down button and turned in on myself.

After a few days of hibernation, I started to be somewhat more active. I took my mom to Gettysburg, took up therapy again, and started attending a "mindfulness and meditation group" which really helped sort out my thoughts in a calming manner. In all honesty, I think I might have been lost without this group. My hair had continued to fall out to the point where I had to completely buzz it off. I also became very weak and my appetite disappeared. If I hadn't joined this mindfulness group and taken up therapy again, I probably wouldn't be here to write on my blog anymore. I would have given up.

The group even helped me get to a state of confidence when faced with my next obstacle...my new treatment. My first immunotherapy appointment was coming up and I went into it thinking "well I've gone through 2 kinds of treatments...I know everyone in the infusion center...I know I can do this and I'll just take whatever symptoms come with it".....little did I know this would be an ordeal on it's own.

I went to my first appointment with my head held high. I greeted the nurses there as if I had just seen them yesterday (it felt like I had). They got the needle into my chemo port with ease, but there was an issue with the blood return. After a few flushes and a little bit of time, they fixed the problem. I was then told that because it's immunotherapy, I didn't need any premeds (chalky steroid pills that keep me awake for hours) and they started me right away on my hour long IV drip. I started watching the news of Hurricane Matthew on their little TV system they have for patients...when all of a sudden I realized I couldn't take a deep breath. At first I just shrugged it off thinking maybe it was my anxiety...and then my breathing got shallower and shallower. I was becoming flushed and had just enough breath to call the nurse over and tell her I couldn't breathe.

All of a sudden it was panic in the infusion center. So many nurses rushed over to take my vitals, put an oxygen mask on, cut off my IV, and call over one of the oncologist to diagnose the situation. Apparently this drug was causing my veins to constrict and they had to administered a drug to fix it. They said I would need to take this as a premed before each of my treatments (darn). Once I was off the oxygen mask they started me up again on my treatment and before I knew it I was done. But since I had never had a breathing problem ever in my life, I was totally scared going to sleep that night...thinking I would go to sleep and stop breathing in the middle of the night and not wake up.

With a little meditation that I had learned from the group I was able to coax myself to sleep and haven't had an issue since. I may not be back to the mindset I was before my week in hell, but I can definitely say without a doubt that thanks to meditations, I am so much more better off than I was before. Sure I have my low points and dark moments but I truly think the positive outweighs the negative. We all have to find things to laugh and smile about. Every once in a while we just need to breathe and take notice that we are. I think everyone, not just cancer patients, should take a moment everyday and just look at themselves from the inside out, breathe, look around, and realize how lucky they are to be alive.

"Look around, look around at how lucky we are to be alive right now!" -Hamilton the musical