Friday, August 26, 2016

Hello Again!

Wow!


Time flies! I haven't been on here as you can see in a while. To say that a lot has happened in a year is an understatement because A LOT has happened. I'm looking to pick up where I left off in my last posts. Please comment if you'd like me to touch base on anything specific. This is more of an introductory of me coming back into the blogging scene. :)


I'm thinking of my next post to talk about relationships and being single after cancer. One of the most common questions is when to disclose to someone your medical history of cancer and also the possible long-term effects you may have to deal with especially if it affects reproduction.

Tuesday, April 7, 2015

Do I have something on my face?

So I've been working on this blog for some time trying to get all my thoughts together in regards to this matter. It is going to be a bit of a rant and I apologize ahead of time but it will serve as kind of, hopefully, an educational blog for people on the outside to get a better understanding/view what its like to be a cancer patient and strangers staring at you.

#1: I'll start of with this we're still the same people as we were before our diagnosis. I tend to get a lot of pity from people for my diagnosis when I tell them I have cancer and I'm sorry but please don't. Don't tell me you're sorry because it's not your fault I have this illness. I don't need you to feel bad for me either because as much as a cancer diagnosis sucks at the same time it brings a whole new meaning to "live your life" that only people who have cancer understand. Before cancer I had this whole plan of how I was going to live my life: graduate high school, go to college, graduate college, pursue my career, be married by the age of 25/26, have kids right after I'm married, etc., essentially what we all sort of dream/plan. And I look back and in a way it's very robotic, of course every now and then squeeze a vacation or 2 between each of those milestones but we tend to go into a routine of our everyday life not appreciating the little things. Now I have this profound appreciation for everyday that I live because as quickly we come into this world we quickly depart. Now every day that I live I want to live it to the fullest which I know I would not feel like this if it wasn't for the cancer. I have now rearranged my primary goals and their importance and the one that is at the top of the list before anything is traveling and getting to see the world.

#2: Stop staring! I have to say nowadays that is one of my biggest pet peeves. When I go out to stores where there tends to be a lot of people I wear my mask as a precaution to protect myself from other people's germs and for some reason because people see me wearing a mask they associate it with I have to have something that is contagious and they look at me funny and scared. Common sense would be if I had something contagious do you really think I'd be walking up and down this aisle where I can give it to other people? And I know some of you would say just ignore them and don't pay mind to them which I do 75% of the time but the other 25% of the time means I've noticed you staring and I've caught you staring now please stop. The ones that tend to be the worst are of course kids and I know they don't understand but this is also where parents should educate and teach their kids that staring at strangers is not nice. At first I'll ignore them I'll let them have their moments of staring and looking at me for maybe the first 5 minutes but once it passes that and all they're doing is staring at me nonstop then I'm going to call you out and acknowledge you and I do so by waving at them and saying hello with a smile on my face and of course that always quickly makes them stop lol and it embarrasses them a bit. Also what always catches people's eye is my bald head which I embrace it by showing it off loud and proud (also Lola, my wig, tends to make my head sweaty and itchy too lol). People act like they have never seen a bald person and at that a girl!

I have to say I have encountered situations with people that in my head I'm asking myself "What is wrong with you?". I've had a woman in the middle of a Wal-Mart aisle blatantly ask me why I'm wearing a mask. The sarcastic Jennifer wanted to come out and say I have Ebola, at that time that was the craze and it has now sort of subsided but I nicely answered I wear it to protect myself because I have cancer. And for any cancer patients/survivors out there reading this knows this always opens the can of worms that comes with "I had cancer... Someone I know has cancer... My mother died from cancer... etc." and they start telling me their whole story. Of course I don't mind and it's nice to share stories and empower each other to keep surviving but I feel like sometimes there are other ways to go about asking why I look the way I do. I've heard kids as their walking by me and staring at me ask their mom "Why does she look like that?" and then we've already have a quite a distance walking away from each other that I never get to hear the explanation that parents give.

I remember when I went back to school after I got clearance from my oncologists I was in the library studying and doing homework as I waited for my next class to start a guy came up to me out of nowhere to the table I was studying at and asked "Why is your hair cut that way? Is it for your job or by choice?". At that time my hair was coming in and it was in the form of a pixie cut. And I won't repeat myself again because it continues with telling my story and diagnosis and so on. After I tell them my story its always funny that it proceeds with "Are you OK now? Like are you good now? You're not going to die right?". But it goes to show the ignorance of the people in our day and age. You would think that we have come so far compared to the past times but in a way we're still the same or repeating those bad habits.

I have to give props to my lovely pain in the butt that I call my hubby. I know it's the hardest for him because he always catches people's reaction before I ever do and I have to talk him into not giving the people the light of day because they just don't get it, they don't understand not to judge a book by its cover. We have now a plan to come up with a T-Shirt where in the front it will say "Stop staring! This mask is for my protection from your germs" and on the back it will say with an arrow "Or you'll have to deal with him" just some light humor when going out.

As I draw this to a close because I can go on and on about my stories and of course I'm sure there are people with maybe worse encounters and mine may look like nothing but I hope people can take from this is that I'm just like you. I may look different because of my hair and my battle wounds I have to show but don't look at me funny, a nice smile and acknowledgement would be appreciated. One JC Penney associate once asked me politely because I had catched her glimpsing at me a few times so I figured she had an inkling that I was a cancer survivor "If you don't mind me asking why is your hair so short?" And I told her why and she proceeded with a compliment that she liked the look and I wear it very well. I told my boyfriend that's how its done, not creepishly staring at someone trying to figure out why they look the way they do but just politely ask or start it off with a compliment.

Once thank you again for taking time out of your day to read this and I hope you enjoy it and gives you a couple of chuckles. :)

-Jennifer

Saturday, April 4, 2015

Update

So it's been a while since I've posted a blog and some time has now passed waiting for my admitting day to come. It is now Saturday and I am being admitted most likely this Monday evening since where I'm having my transplant done is Florida Hospital here in Orlando where they have limited number of rooms for transplant patients, there is only 16 rooms! They're always full as unfortunately the list of people expecting or awaiting to do a transplant is growing each day.

My last session of chemo was March 16th and then I had 3 weeks to kill time and "vacation" meaning eat whatever I want, do whatever I want under 2 conditions: don't get sick and don't get pregnant or as my nurse practitioner (NP) likes to phrase it "if you get pregnant, I'll kill you!". Of course she says it with a sense of humor (please don't get upset lol). I was lucky enough to have my birthday to celebrate outside of the hospital, one of my worries when this first started was when they said they were looking originally to admit me mid-March and be in the hospital for 3 weeks meaning I would be in the hospital for my birthday. Luckily admitting day was pushed to April 6th. Since then I've been trying to live it up, been eating every craving that hits my stomach from sushi to the best tripleta sandwich in my opinion from La Tripleta Truck on OBT to going window-shopping at the mall. Post-transplant I'll be confined to the comforts of my home as I will not have an immune system meaning if I was to get sick my body won't know what to do. I will be like a newborn baby and I have to wait a year after my transplant anniversary to re-do all of my vaccines from childhood. I'll also be on a limited diet for some time: no fresh veggies or fruits, no sushi, no foods from food trucks or restaurants and definitely no buffets.

For now I've just been planning all the activities and trips I want to go on once I get the green light from my doctors in regards to traveling and going out. I've also been finding hobbies here and there to keep me occupied like arts and crafts, I've really gotten into painting and decorating things. And of course I'll try to keep up with my blogging and keeping everyone informed on how I'm doing and what's new.

The actual day of my transplant will be April 15th, this is the day I will get my cells back that they had collected previously and harvested, they call it "Day 0". I'm really hoping that all of this works and goes well. Going through this process has sucked, all the meds I get and I always hate the side effects or feelings I get because of them. When I went to visit my transplant doctor this past week the talk of relapse came about and although I want to hear the possibilities and the "what if's" at the same time I get scared and worried. Like any other cancer patient/survivor the thought of recurrence is always in the back of your head. A mild headache can even freak you out to think "Is the cancer back?". My transplant doctor was very honest which I appreciated him for it as sometimes doctors don't like to be or avoid telling you things so that you don't freak out. I was told that if this transplant doesn't work a donor transplant would now come into play and that is a whole different ball game. The percentage of mortality from a donor transplant is 30-40% due to the 3 factors of the actual cancer killing me, the donor's cells attacking my body and/or by infection because I will have a low immune system. This was a lot to take in and I'm really hoping that this does work as I've seen and heard both sides people who survive through it and enter remission for the rest of their lives and people who unfortunately get scheduled for another transplant due to recurrence. Also there was talk of continuing chemo post-transplant as a precaution for about a year to a year and a half.

I'm definitely looking forward to the light that is at the end of this LOOOOONG tunnel. I'm looking forward to getting back to work even though as much as people complain about working and the long hours I just miss the interaction with normal people. I'm looking forward to the many trips that I plan on taking around the US and world. Finally I'm just looking forward to getting back my life cancer-free. It's been a long journey for me and unfortunately I'm starting to get tired of everything. I'm getting tired of the pity, the looks and stares, the side effects of medications, not being able to do certain things. My mom always tells me that I will have more than enough time after this to do whatever I want when I want but I'm tired of waiting for that. Right now is the time I see so  many people my age living life, graduating college, traveling the world while I'm stuck at home flushing my tri-fusion catheter line and making sure it doesn't get infected or clogged. No one else I know is worrying about medical crap like this that is not actually going to school for it or works in the field.

For now I'll just continue to dream about how I will one day be living my life post-cancer. Once again I will continue to keep everyone updated. I'll try to post on either Monday or Tuesday in regards to how it went for me at the hospital and getting settled. I'll also be starting chemo again on Tuesday, they will be giving me a new regimen which is a lot more aggressive to help get rid of any and all cancer cells that are still lingering.

Thank you for reading!

-Jennifer :)

Saturday, March 7, 2015

Journey to Bone Marrow Transplant

Hello again!!

I know I'm very late in blogging sometimes I get caught up playing GTA and forget to blog that day as well as I have been going back to the hospital for appointments. I left off my last blog stating that I'm currently getting ready to get a bone marrow transplant and I've recently finally got the green light to start the process. Now for everyone to better understand this because I know the first thing I thought of when the term "bone marrow transplant" was said was surgery and a big one and now I have to find a donor which we all know how long the process can sometimes be as we see it play out on shows like Grey's Anatomy (which I have to say so myself I'm really into and have been religiously watching on Netflix).

There are 2 types of transplants: autologous which means it comes from yourself in other words no donor needed which is what I'm having and allogenic which is where a donor is needed, the kind of transplant we hear and see more of. The way that autologous works is that my stem cells will get collected in the form of dialysis from my blood and then returned back to my body later on. Crazy huh? No major surgery and sounds so simple. I will be in the hospital for a minimum of 2 weeks which I have already began preparing by packing and getting decorations together so that I can make my room more 'homey'. I was finally able to get a tour of where I will be staying which was nice. I've also been trying to enjoy my freedom before I'm cooped up in a room for so long.

I recently got my updated calendar from my BMT coordinator and I have a tentative admission date of April 7th (I get to enjoy both my birthday and Easter! Yay!). So from now on I'll be traveling back and forth to the hospital getting ready for the BMT. I know this blog is a bit on the short side I kind of rushed to get this posted as soon as possible since I know I've been slacking in posting another blog and I've already been asked when I was going to post my next one. I'm definitely going to blog next about my experience while getting my trifusion line placed as it was very interesting... let's just say waking up from it felt like I had been drinking all morning lol.

Once again thank you so much for taking time out of your day to read my blog I appreciate it! I'm so sorry for the delay!! I'm going to post more stay tuned!

-Jenn

Monday, February 23, 2015

My Rediagnosis


Hello!

So this is my first time blogging and I'm still trying to figure things out so please be patient with me. I will start off with a formal introduction my name is Jennifer, I am 22 years old and I am currently a Hodgkin's lymphoma cancer patient and as the title states this is my rediagnosis story.

To start off from the beginning of my wonderful story I was initially diagnosed in June 2013, just 3 months after my 21st birthday (talk about a buzz kill huh?), with Stage 2 Non-Hodgkin's lymphoma. I can even be more specific and tell you the specific kind: Diffused Large B-Cell lymphoma, talk about memory. I had a lymph node in my neck by my clavicle that was protruding the skin and was experiencing all the symptoms of cancer (night sweats, loss of weight unintentionally, anemia due to the weight loss and the growing lymph node). The way that I found out is I was admitted into the ER because I was coughing up blood and they performed all kinds of tests and scans and through my chest x-ray scan they could see there was a tumor that looked to be either in my lung or on top of it. With a CT scan underway it resulted that the tumor was on top of my lung and was measuring 16cm, there were actually 2 separate tumors that were starting to overlap one another. This then created a biopsy to be scheduled to determine whether the tumor was benign or malign, now we all know the result no need for me to say.

I was admitted into the hospital, at that time it was called MD Anderson Cancer Center here in Orlando. My stay lasted 9 days of which I underwent chemo, my regimen was called R-CHOP, I had my power port placed in and given all the instructions and handouts that come with a cancer diagnosis. For the next 6 months I received chemo every 3 weeks and in the month of December 2013 I went in for radiation every day. Of course I lost my hair during the chemo which sucked terribly and took a huge blow on me. I was lucky enough not to experience the typical chemo side-effects. I did gain a large appetite and craved many foods due to the steroids I was given (worst thing ever invented!). By my 3rd round of chemo the tumor had shrunk significantly, more than half of it was gone. But as a precaution we still moved forward with finishing 6 rounds and a month of radiation.

Now you're wondering what happened that I was rediagnosed. As of January 2014 I was officially in remission and given the green light from my oncologist to continue my normal pre-cancer life. I started slow by going back to school and finishing my AA at my community college and then I would search for a job afterwards. Also it had been so long since I was in public places and interacting with people and with my hair growing back I was worried and nervous being around people that don't already know and understand my story. I graduated that spring and began my search for a job. By June 2014 I landed my dream desk job and  was getting my life back on track. I even started looking into getting my own place with my fiancĂ©. Of course during all of this I was still returning for my routine checkups and scans to assure that the cancer was gone.

By July 2014 unfortunately one of my scans was not looking 'normal' and from that point on started the battle of finding out what was going on and get answers if the cancer was returning. It wasn't until November after 3 needle biopsies, 1 surgical biopsy and multiple scans it was finally determined that instead of the same cancer returning, I was actually misdiagnosed the 1st time around and this time it was now Hodgkin's lymphoma. The chemo from previously helped but only fought off a specific set of cells and the radiation did not do anything. The news to both myself and my family was not easy to take in. Right when I was getting back on track and living my life again, I was sucked back into the life of a cancer patient.

Currently since being rediagnosed my life has been on pause. I'm currently waiting to start my bone marrow transplant. I am unable to work at the time due to my counts being low because of chemo and of course for any cancer patients out there #1 rule during treatment DON'T GET SICK! (and #2 for ladies DON'T GET PREGNANT!). I am hoping to blog my journey this time around. When I was first diagnosed I didn't think of writing or blogging although the ideas were presented to me I didn't find any interest and also pure laziness didn't let me either. I am wanting now to share my story and also keep everyone updated. I feel like my everyday life should be a reality show or drama series with all the chaos and craziness that happens going through this diagnosis again. I'll try to blog at least once a day, I know I have many stories to tell and topics to touch base on.