Monday, April 24, 2017

It's About Time!

Today I'm rather speechless but in a good way. I woke up still feeling quite unwell from my recent chemo appointment...the usual side effects of nausea, mild cramping, and mouth sores. After hitting the snooze alarm about 50 times, I rolled out of bed, slipped my shoes and coat on, and dropped the pug off at the vet for his scrub down. As soon as I got back, I had the intention to just make a beeline straight for the bed again and snatch some more z's before the day officially began. Before I could drift back into my slumber, I did what every 24 year old would do...checked my phone for any new notifications. Surprisingly I found an email had been sent to me with the title "PET scan results". Usually, I would be up and alert but I was so insanely tired that I just casually opened the message without even thinking twice and expecting to hear the worst.

My eyes glossed over the message. "Dear Maddie. Congratulations---"
                                            Wait a minute...WHAT?!

                                                 Congratulations?!?!

"Your scan shows a marked response to treatment, much better than with any other treatment so far."

I must be dreaming...surely I didn't wake up yet.

"We should continue this treatment until we have feedback on the CAR T-cell project."

                   IS THIS REAL LIFE?!?!?

It's about freakin time I get a PET scan result that shows some form of improvement!!! Only one thing to do at a time like this...PARTY!!!!!!

Finally, a victorious battle in this war against cancer!!

Friday, April 21, 2017

Patience is a Virtue, But Sleep is a Necessity

 I just got back from my 5th chemo appointment for this current treatment, and I figured I'd give you a funny little story and a quick update. So before anyone asks me, I had my PET scan this past Wednesday morning and I'm still waiting for the results...yes, you heard me right. Still waiting.

I normally get a response about the results within 24 hours, but the reason for that is because all of the PET scan results I've gotten in the past have come back with bad news followed by an emergency follow up appointment to discuss what the next option is. However this time...it's Friday evening already and I am still waiting. I have already sent my doctor an email and a voicemail, but I was told today at my chemo appointment that he is doing hospital rounds and might not get back to me until the end of his shift. I was also told that "no news is good news"...which is cool and all, but I'd really like some sort of confirmation...along with a reason to celebrate for once. Haha!

So since I didn't hear anything about a change in my treatment, I went in for chemo at my usual time...bright and early in the morning today. Due to the anxiety of waiting for results, I didn't go to sleep at a decent hour and only got about 5 hours total by the time I woke up. I quite literally rolled out of bed, put a beanie on to cover my horrific grow-out, bedhead, got my things and left. I figured I might just crash and catch up on my sleep after I sign in and get settled. I went straight to the reception and asked if there was anything on my file about my results or any changes in my treatment today. Sadly the receptionist told me that she had no access to scan information but that the nurses might be able to tell me if they came in. She then proceeded to put my wristband on and I took a seat in the waiting room.

Suddenly a woman (let's call her Nan) leaned over and told me about her latest PET scan and how she was starting a new type of chemo for her very aggressive form of breast cancer. She told me how her oncologist was absolutely amazing and that they always get back to her asap. I asked her who it was and she mentioned the name of my previous oncologist...the one who told me that I needed to quit my job and lectured me when I cried after receiving news of my cancer diagnosis at 22. I decided to bite my tongue and not mention this as she seemed thrilled with this oncologist. To each their own, right?

This small talk conversation was ok in my book until she started comparing her cancer to mine. Now I understand why some people do this. It's a failed attempt at empathizing another's situation. They are looking for validation for their own situation as well as comparing the severity of their cancer with others...despite them being completely different problems. I notice that a lot of people try to make it seem like their cancer is more important than someone else's and try to explain how I "should be grateful" that I don't have their specific cancer. Normally I just shrug that kind of talk off, ignore it, or change the subject to something else...but despite my attempts, I seem to have only encouraged this person not only to continue talking about uninteresting topics, but continue talking in general.

A few moments after sitting down, my nurse (let's call her Emmy) showed up at the door to welcome me back to my usual spot in the infusion center. I normally sit all the way at the far corner of the room, because I like to listen to music, read, or occasionally take a nap...and it's the most quiet section of the infusion wing. Immediately, I shot up and bolted for the door....

...as she also signaled Nan to follow. As I was getting my weight and blood pressure checked, I asked Emmy if my scan results came in. Sadly, she told me that she can't see anything on my file until the doctor does and she thinks they haven't come in yet. Usually I would feel a bit discouraged by this, but the only thing on my mind was that I just wanted to lie down in the comfy chair and take a nap. So, I made a bee-line for my usual spot and just as I was unloading my backpack and taking off my jacket, I could hear Nan asking Emmy if she could take the chair next to mine. The first thought going through my head was...

In that moment I knew...I was not going to be getting any sleep for the next couple hours. The only thing separating us was a curtain (like they have in the hospital). Her treatment actually turned out to be shorter than mine...but you also have to take into consideration that a good half of getting chemo is hooking a needle up to your chemo port (a little implant device under your skin on your chest), taking your pre-meds, and waiting for the pharmacy to prepare and distribute your chemo drugs (which they can't do until the previous two steps are done). So despite all my attempts of trying to sleep through it...I had put up with an hour of Nan talking about totally random stuff like her new industrial strength toilet she's getting put in today, her FIVE cats and how she adopted each and every one of them, as well as her life story. I didn't even have an opportunity to chime in, she just kept going on and on...

Within half an hour of her babbling, I learned her age, how many kids she had, where they went to school and what they are doing now, her job, her 5 cats, and she probably mentioned a whole ton more I don't remember. I was in a torturous (yet humorous) stage of sleep limbo where as soon as I would start zoning out and approach the blissful drift of sleep...I would be asked a question like "so how many cats do you have?" or "do you like mexican food?" or "I've traveled all around the world, have you?"....

Again, I normally wouldn't be too upset about holding small talk during treatment...it's a rare thing as most people bring relatives or friends along to socialize with instead of communicating with strangers. It also gets your mind off of how slow time seems to be moving when getting chemo (for some people you are there for practically a whole day). But out of all the days to befriend someone, it was the day I desperately craved sleep. So ultimately I didn't want to shut her down in case future (hopefully more interesting) conversations occurred. However, as time went on, I felt certain that if I listened to one more story complaining about her backyard pool (no joke), I would have ended up like Kahn in Star Trek...

Thankfully, in the end, her chemo sequence literally lasted 10 minutes as opposed to my 1.5 hour long chemo...but before she left I overheard the nurse telling her when she was expected to come in next and what her chemo schedule would be. Of course, with my luck, I found out she has the same days/times scheduled as me.

Despite it all, she seemed nice and I'm sure the reason she wanted to engage in conversation was because she was feeling lonely. I tried my best not to completely ignore her for that reason. And who knows what will happen during the next chemo treatment. All I know is that I've learned my lesson...bring headphones.

Anyway, I posted some funny videos of this chemo adventure on my instagram: https://www.instagram.com/madomelodic/
You can check that out along with my gofundme/MakeAWish (there's a link in the top right corner of my blog). Please share it!!
Leave your comments below and let me know what you think of my chemo adventures with Nan. If you want to see more updates (including my upcoming PET scan results) please subscribe or submit your email address on the right hand side so you get updates when I post!! Thank you everyone! I hope you all have a super awesome Earth Day and I'll post again soon!! Until then!!!

Saturday, April 1, 2017

Active April

So this past Friday, I started my second cycle of this chemo regimen. Woohoo!! At the end of this month I get my PET scan and see if it's working. I'm having very good vibes about this treatment (despite the horrific mess that happened on day one) so I'm hopeful that I'll get good results...for once.

But that's not the only thing I've started. Apparently, I've been gaining weight like CRAZY this past month. Now most people think cancer patient=sick person=losing weight....and while that may be the case for some people, especially before they are on treatment...other people tend to gain weight during chemo. This is because of the steroids that are given to you as your pre-meds. For me they are these two little green pills I take and they taste like chalk in my mouth. Thankfully my nurse gives me some apple juice to take them so the taste doesn't linger...bleh!

These little green pills are not just monstrous in gaining weight, but they also seriously mess with my sleeping schedule. The first night after my treatment, my body doesn't know what to do to get to sleep. It's very difficult to describe to someone who hasn't taken steroids before. The best way I can describe it is, my body feels like it just ran a marathon and it's tired...but at the same time my mind is awake and I feel like I have a huge rush of adrenaline that I can't bring myself to a state of calm long enough to fall asleep. I've never really had coffee before, but I would assume this is what it feels like to consume 3 cups of coffee just before bed after being awake for hours.

In addition to this, I found out another contribution to weight gain is that my last treatment, the immunotherapy I did this past winter, caused my thyroid to freak out and now it's under-working. Originally my doctor thought it might bounce back, but after doing more bloodwork, it's been confirmed that I have hypothyroidism, which if not treated can cause fatigue and weight gain. DOUBLE WHAMMY!

So facing this new month of April, I've decided to take some action towards that. Even though chemo is quite a bother, I've come up with an "Active April" workout routine for the entire month as well as taking daily medication for my thyroid. Hopefully by doing this, I'll see some improvement and get back to where I was originally. This month is definitely going to be a busy and challenging one, but at the same time I feel confident about it. Just gotta take one day at a time. Eventually...I'll get there...to that finish line.
Click here: https://www.youtube.com/watch?v=hUgmp2STrNg

GoFundMe: https://www.gofundme.com/maddies-travel-fund