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
Showing posts with label Song. Show all posts
Showing posts with label Song. Show all posts
Saturday, April 1, 2017
Sunday, August 14, 2016
Wait For It
Well the results are back folks!!!
I got an email from my oncologist at 11pm last night saying the pathology came back...and we're looking at the same Hogkin's Lymphoma which means...NO HYBRID!!!!
This is brilliant news because at least we know what we're working against and the outlook seems mostly clear. Considering I had taken an entire month to do my fertility treatment, there is the likely possibility that these new progressions actually formed during that time. So my oncologist sent my pathology report to a specialist at NCI for a second opinion...during which time I'm going to continue my immunotherapy treatment one more round. Then I repeat the PET scan next month to see if there is any decrease. I'm so relieved because if there is a decrease then I'll hopefully be in remission by the end of the year and start on the new chapter of this journey...the bone marrow transplant. Although that chapter is scary to think about, I'll be happy to get it done and over with so I can move on with my life.
As I've stated before in my blog, I'm kind of in this waiting cell as I'm fighting this curse. Everyone around me is going about moving on, forming families, achieving dreams, working, and going about life...and I'm on the sidelines watching. But as the character Aaron Burr in Hamilton states "If there's a reason I'm still alive...then I'm willing to wait for it"...if everything goes as planned and I'm in remission by the end of the year then I'll be one step closer to TRULY living again. Until then, I watch the hours pass while the list of things I want to do grows. I might feel very much alone and secluded right now as people in my life are moving away, but I know my time will come to move on and start a new, happier journey. I'm willing to wait and fight for that.
I'm beginning to realize why people call a bone marrow transplant a "rebirth". It's not because you have no hair or you have to build back your strength and immunity. It's because you are now relieved of the curse of cancer and can not only resume your life but start things over. I originally was majoring in theatre at college, but this cancer has put a GIANT perspective on life. I want to use my talents to help others who are in my current situation. If I am given the chance of a "rebirth" I will change my major to music therapy. It's not only a successful career option, compared to theatre, but it's something I would enjoy doing as I would be helping bring smiles to others in need.
There are also many other things I'm waiting to do. I want to go out and meet people. I want to travel and learn about the many worldly cultures. I want to try to make a difference with whatever I have left on this Earth. I want to eventually have a family of my own. All of these are things I'm willing to wait for. People say "patience is a virtue"...well cancer patients know that all too well. Whether it's waiting for a diagnosis, treatment to be done, or for that confirmation of remission...strength and patience are what we learn best from it all. And it's hard to come to terms with that especially when we feel weak, helpless, or alone...and that's why I form a list of reasons to keep fighting. Afterall...I'm the one thing in life I can control.
Inspiration I got for this post is from the amazing musical Hamilton...check out this beautiful song:
https://www.youtube.com/watch?v=ReTP6x_sDiMWednesday, May 18, 2016
Not Alone
Before I begin this post, I'd like to apologize ahead of time if my thoughts don't sound too coherent. This is mainly because I am still physically and mentally drained from my recent immunotherapy treatment. I will try my best to convey my thoughts in either words or my lovely little gifs. Haha!
As I stated in my last post I completed my first immunotherapy treatment. It took hardly any time at all and thankfully I had no adverse reactions. Little did I know I was dealing with a raging storm on the rise.
Unlike standard chemotherapy which is a series of toxic drugs that kill both cancerous and healthy cells, immunotherapy specifically targets your immune system and reprograms it to kill only the cancer cells. In order for this to work, your body normally reacts as if you got a really bad case of the flu since your body is working double time at killing cancer cells. Luckily the only "flu-like" symptom I've experienced is fatigue...but WOW did it hit me like a giant slap in the face.
When Monday came around I went for a dental cleaning....apparently it's mandatory I get checked out before my transplant. As soon as I came home from that I seemed to have passed out on the bed and slept through the entire day. I woke up around 1 am when my mother came home and she asked why I was awake. I told her my lack of activities today and she asked how I was going to sleep through the night. I simply responded "like this!" and passed out again.
I slept through the whole night and woke up at 11am just in time to get ready for my first follow up with my oncologist. I was so out of it that morning that I came to my appointment with some major bedhead and had a giant sweater on in 75 degree weather to cover up my embarrassing sunburn...I was not in the mood for a lecture on sunscreen. My doctor proceeded to tell me that fatigue is extremely common and I should be feeling better by the end of the week. Then she said something to me that caught me totally off guard....if all goes well, I only have 2 more infusions of my immunotherapy before I go in for my transplant process.
We're still looking at potentially mid to late August when I'll be entering the hospital...so soon. Everything seems to be happening so quickly especially since most days I've spent inside with not much to do (rainy weather and all). What's worse is I don't even want to stay cooped up in the house all day. I'm 23 and I want to go out, travel, meet new people, work, go back to school...MINGLE! When I explained this to my doctor she told me that it's very common to feel that way. She told me I should go to my "young adult" support group, but I don't even feel like I can connect with anyone there. I'm the only 20-something year old and everyone else in the group is in remission. Then there's the fact that I can't really hang out with my friends as much because most of them are graduating and moving on with their lives. I don't want to bother them with something they can't really understand. And the times when I'm actually invited out to places by friends, happens to be the time when my body feels so dead to the world that I apparently look like an extra from The Walking Dead...and I'm forced to turn it down.
Obviously this past week has been taking a very emotional toll on me. The fact that I'm going into this transplant without really knowing what will happen and with only my immediate family to visit me in the hospital when they have the chance...it's very hard to take in. But the thing keeping me going strong is actually this blog. I've received quite a bit of feedback from you all and it has prompted me to keep writing more. I've been able to reach out to people like me, and by enlightening them about my story, we share a comfort that we aren't alone. The joys of having technology are in abundance. And it's through technology that I will be able to communicate with people and mingle when I'm alone in a hospital room. I take comfort in that and feel confident I can get through it...even though I fear it. Knowing this, I feel prepared when taking on this transplant.
Every cancer story is different because everyone faces it in their own way...but no story should be taken lightly. Every cancer story is a trial and a hardship for not just the patient but everyone around them. It's just another reason why I decided to write this blog...not just to show the strength and experiences I have...but to also display the weaknesses and fears that a lot of other cancer fighters face. Some people may read this blog to come to the realization of what family members, friends, and peers who have cancer are going through...others may read it to know that they are not alone....because you aren't alone.
Not Alone (by Darren Criss) <------ Listen to this!!
Sunday, June 7, 2015
It Looks Like A Botched Execution
There is so much going through my mind lately that I've been having trouble writing this post. I've been so concerned with tests and surgery and all the while trying to keep my job and my sanity.
Lately I had a neck biopsy to determine what kind of lymphoma I'm dealing with. I arrived at Suburban Hospital with my dad and sister just ready to get it over with.
(Not the best pic but yes I did get my haircut...LOVE IT!)
I had some difficulty with the IV due to my stupid anxiety but my sister was by my side the whole time and luckily they had a TV with a movie channel playing "Into the Woods" which I hadn't seen yet...so that kept me entertained a bit.
My CT scan came back just before the procedure and they found several enlarged lymph nodes in my chest which has been causing me slight breathing issues and coughing. The anesthesiologist was afraid of putting me under general anesthesia so she put me under a twilight version where I was sort of in a nap. I don't remember anything after going on the table in the OR. Next thing I know I wake up to graham crackers and apple juice which felt heavenly going down my throat as I hadn't eaten all day and it was 8pm. Apparently I had conversations with my sister about Jon Snow from Game of Thrones and The Tudors which made no sense but I have no recollection...too bad she didn't get a video. My ENT surgeon was great and gave me pain killers but left me with this HUGE scar on my neck that looks as though someone tried to behead me but got distracted half way through because of tea time.
(An accurate representation I'm sure...lol!)
There was no band-aid, just some stitches on the inside and surgical glue on the outside...leaving my neck totally stiff for the last several days. I can move it a lot more easily now but still have difficulty hugging people and turning all the way to the left.
Then after the surgery we get a call from the oncologist...she wants me to have a bone marrow biopsy. Now this is something I had a feeling was going to happen and was dreading the thought even more than surgery. I had done research on it before and everything pointed to pain and discomfort.
Luckily a few days later my oncologist made a change of plans and decided to refer me to radiology for the procedure so they can put me under twilight again so I don't remember anything and I won't feel any pain. I'll probably be so loopy afterward. Maybe I can get a video of the after effects. lol!
But in the meantime I've been trying to maintain a normal life...which isn't easy. Some people at my work are questioning why I've been taking so many days off for these procedures and appointments. Then I have people give me really weird looks when they see the disturbing scar on my neck. I have people asking to see me but my energy is literally shot so bad that I've had to start drinking Boost beverages. Just the other day I sat down to watch the Princess Diaries on TV only to find myself waking up 10 minutes before it ended...it's like I have no control on when my body decides to shut down for a nap. It's so frustrating!!!
Anyway I didn't want this blogpost to sound all ranty but this is basically what has happened in the last week. Now I'll have a PET scan and a bone marrow biopsy to look forward to which I'm sure I'll post for each. Until then I'll leave you with a link to a song that is basically my theme through all of this.
https://www.youtube.com/watch?v=LVxon65u3tA
Lately I had a neck biopsy to determine what kind of lymphoma I'm dealing with. I arrived at Suburban Hospital with my dad and sister just ready to get it over with.
I had some difficulty with the IV due to my stupid anxiety but my sister was by my side the whole time and luckily they had a TV with a movie channel playing "Into the Woods" which I hadn't seen yet...so that kept me entertained a bit.
My CT scan came back just before the procedure and they found several enlarged lymph nodes in my chest which has been causing me slight breathing issues and coughing. The anesthesiologist was afraid of putting me under general anesthesia so she put me under a twilight version where I was sort of in a nap. I don't remember anything after going on the table in the OR. Next thing I know I wake up to graham crackers and apple juice which felt heavenly going down my throat as I hadn't eaten all day and it was 8pm. Apparently I had conversations with my sister about Jon Snow from Game of Thrones and The Tudors which made no sense but I have no recollection...too bad she didn't get a video. My ENT surgeon was great and gave me pain killers but left me with this HUGE scar on my neck that looks as though someone tried to behead me but got distracted half way through because of tea time.
(An accurate representation I'm sure...lol!)
There was no band-aid, just some stitches on the inside and surgical glue on the outside...leaving my neck totally stiff for the last several days. I can move it a lot more easily now but still have difficulty hugging people and turning all the way to the left.
Then after the surgery we get a call from the oncologist...she wants me to have a bone marrow biopsy. Now this is something I had a feeling was going to happen and was dreading the thought even more than surgery. I had done research on it before and everything pointed to pain and discomfort.
Luckily a few days later my oncologist made a change of plans and decided to refer me to radiology for the procedure so they can put me under twilight again so I don't remember anything and I won't feel any pain. I'll probably be so loopy afterward. Maybe I can get a video of the after effects. lol!
Anyway I didn't want this blogpost to sound all ranty but this is basically what has happened in the last week. Now I'll have a PET scan and a bone marrow biopsy to look forward to which I'm sure I'll post for each. Until then I'll leave you with a link to a song that is basically my theme through all of this.
https://www.youtube.com/watch?v=LVxon65u3tA
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