I read this a while ago on The Lymphoma Club facebook page and asked for permission to post here. What Erin says touches my heart in it's deepest spot: "As of today 1-11-17 I'm done with chemo. I'm not yours anymore cancer. I'm free of you. Free of your fatigue. Free of the pain you caused me. No more inconveniences. No more stealing my time and life. I am in control now. I can do whatever I want with no resistance.
These last six months have been the most difficult and challenging of my life. I've had to deal with loosing my hair and my freedom. I had to restrict my activities to barely nothing. I had to stop my schooling which I am so in love with. I have worked to hard to get to where I am academically. I had to pause my relationships with my friends, boyfriend and family. Which my whole life revolved around. Cancer caused me to take care of myself which I never did when I was not sick. It was a huge adjustment.
I want to thank everyone sincerely for checking in on me when they did. I want to thank everyone who sent me gifts to keep my spirits high when I felt so low. I couldn't get through this with out them. I also want to thank everyone who donated to my gofundme. It has helped in more ways than one. I struggled with staying happy in my darkest times. Which was hard for me because before all this I was happy and busy all the time. I'm a changed person because of cancer. I know my life is forever in a different direction and I've learned so much about myself. I'm thankful for a clean scan which will be happening on February and I'm confident my cancer will never come back. I'm thankful of all of the doctors, nurses and different teams that helped me get to the place I'm in now. Remission. Remission. It's so strange to say. This seemed so far away in the beginning. I missed a lot of time. My whole birthday basically. A holiday. And I can't get that back. But I can live in the moment and not take any day for granted from here on out.
I love all of you and if I can give any advice to anyone it's don't ignore any strange occurrences in your life. Be cautious and do what ever you can to get to the bottom of it. Don't stop just because some doctors don't know what's going on with you. Don't listen to them. Be your own advocate. Research and get on top of it because no one else will. Take your health into you own hands. And above all know you can get through anything with your own inner strength." ~Erin
I am VERY thankful for Lymphoma facebook pages, and fellow Warriors like Erin.
It feels SOOOOOO good to feel like myself again! Holy smokes! I went on a little trip this past weekend to celebrate my birthday AND the fact that Bertha is GONE! We walked a LOT, and my body did not let me down! WOO HOO!
Had one little incident on the way home. I was supposed to take the ferry from Hatteras to Okracoke then to Swan Quarter but it was too windy. Ferries cancelled. WHAT?!? How do I get home? Had to drive up the coast a bit then they told me to look for a KFC/Taco Bell, then turn left to go inland.... About 10 minutes into the trip I look behind me and there are blue lights. Oh shit. This lady Sheriff comes up to me and says I was going 40 in a 25 MPH zone. Oh Shit. She takes my license and registration and goes back to her car. A couple minutes later she walks back to me and says "Ma'am, your license expired 2 days ago. Do you have any relatives in the area? I can't let you drive."
I explained my situation to her....about my last 9 months being a blurrrrr....and that I probably got a reminder about my license but I was too focused on surviving to notice. And then I was in a tizzy when I learned that I couldn't take the ferry and I didn't notice that it was 25MPH and I was just trying to get home......and....and....and (....all 4 dogs are being total angels, even Keeper. They were just sitting still. I think they had their paws crossed.)
She responded with "Let me go call my supervisor."
She walked back a couple minutes later with a ticket for the expired license and explained.... "I'm not going to give you a ticket for the speeding. Here's a ticket for the expired license but if you call the Clerk's office once you renew your license, they will take care of this for you. Now, I can't legally watch you drive because you have an expired license, but if you go park and wait for me to leave, I will never know if you got back on the highway and drove yourself home. Do you need help with directions?".
Angels. They are always there when I need them. You know, if she hadn't pulled me over, who knows when I would have realized that my license expired. I did renew it ONLINE while I was parked....so all is good in the world again.
facing a diagnosis of lymphoma, it can be difficult to know what to expect. I
didn’t know how chemo would impact my life, and there was no way for me to know
how chemo would affect me first-hand. Although there is lots of information
available about chemo, and how to prepare for it, going through it is
are five things I wish someone had told me before I started chemo. I hope these
five things I learned (plus one bonus!) will be insightful to anyone starting
Set reasonable expectations for yourself
probably best that you only plan to do one or two things a day. If you exert
yourself too much and do not feel well or energetic enough to fulfill other
plans, don’t be hard on yourself. Your body is going through so much and the
last thing you should stress about are the plans you are not able to fulfill.
Take it slow. Your friends will understand completely if you would rather veg
out and watch Netflix.
Listen to your body/report to your doctor
a big one for me. I say this to my friends who don’t even have cancer. You
should always be listening to your body. Our bodies are designed to fight for
us, and they will always speak up when something isn’t right. We just have to
listen close enough.
to your body becomes very important because the chemo will affect our bodies in
ways that we’ve never experienced. For me, most chemo weeks came with their own
set of side effects.
pain was the big one for me, which eventually led to being diagnosed with a
pulmonary embolism (the scariest part of my treatment.)
But because I listened to my body (and reported to my doctor), I was able to
catch the embolism in time.
found it helpful to keep a journal or note of each chemo week’s side effects
and then send them to my doctor, or sharing the list with him at my next
Playing the cancer card is OK
always thought it was super awkward to play the card, and wasn’t sure how to
even introduce the topic. Eventually, I figured it out, as I think you will,
too. Sometimes you really have no other choice but to play the cancer card. And
that’s okay. I believe we got dealt this card, and it’s only fair if we get to
use it every now and then!
Give your body a fighting chance
aside, make sure that what you are putting in your body benefits you in some
way. The stuff you are being injected with, although fighting the cancer cells,
is not strengthening your body’s natural resources. Do what you can to consume
the things your body loves and will benefit from. In contrast, I also say that
by listening to your body’s cravings (my craving was Sour Patch Kids!) you are
giving your body what it needs in that moment. We can talk about cravings more
Temper your expectations of your friends (and even your family)
cover this briefly in a video on my youtube channel. I’m not sure what you can
make of my tears in the video, and it’s been a while since I re-watched it, but
friends are going to let you down. Family is going to let you down. Going into
treatment and your cancer diagnosis, I recommend tempering your expectations of
who you think will pull through and be there for you. In most cases, the people
you expect to be there for you are the ones who can’t, and the people that you
don’t expect at all come out of the woodwork and bring their “A game.”
find that this filtering of the friends who didn’t stick around is a blessing
in disguise, and I’m actually pretty happy about learning these things sooner
rather than later.
part I really have trouble with when it comes to the friends department
post-chemo, is remembering that it’s OK for friendships to fall through with
friends who were there for you during treatment.
for life after cancer!
treatment ends, you are entering a totally “new normal.”
Life as you knew it will be very much different. You probably will have
different outlooks, you may be dealing with PTSD, and you will not feel like
yourself. No one mentioned this to me when I was diagnosed, or started
for this. Set goals for some things you want to accomplish post-cancer.
Changing your career path? That’s okay. I did, too!
Preparing for chemo
won’t make it go away, but you’ll be ready for it. And that’s half the battle!
I belong to this facebook group specifically for people with follicular NHL. IT IS PHENOMENAL. I love it. It includes a VERY diverse set of people from all over the world. It is amazing. (And confirms that Cancer does NOT discriminate. AT ALL.) Anyway, I posted about my scan being clear and Bertha being gone. The responses immediately started pouring in and my heart just got bigger and bigger. One of my favorite posts was "Good Luck Bubb" with a smiley and thumb up! LOL! LOVE IT! Then there was my absolute favorite....from someone recently diagnosed: "Since Bertha is gone from you I might adopt the name for my tumor, I got my port today and start treatment next Friday, hopefully Bertha will move out of me too!!"
Now *THAT* is totally awesome! Of course I immediately responded and told her that was a super fantastic idea and to consider me one of her Warriors. And you know, I don't even know this lady AT ALL, but I would do anything for her to make her battle easier. I think ALL the people in this group would. It's amazing. This is the good stuff about facebook.
BOOM! Maintenance Treatment #1 is DONE! It took a little longer than we thought it would, but it's all good. It did my heart good to see all the nurses again! THEY ROCK! Sissy was with me today too. I think I had to pee 6 times so that's a LOT of getting up and down for her to unplug my IV stand...but she just did it without even thinking about it. It's a little overwhelming to think that I have to do these treatments for 2 years, every 2 months. Actually, make that VERY OVERWHELMING. Ugh. I had no idea that this was going to happen....I don't remember this being something that my mom did....but if that's what I gotta do, that's what I'll do. I was thinking about it last night and remembered something that helped me when I was doing stairs at work. It was easier to do 15 flights of stairs if I counted DOWN vs. UP. That way when I was close to reaching the top, I was saying to myself 5 - 4 - 3 - 2 - 1!!! It motivated me. ESPECIALLY when I would say ONE!! So now that I'm doing these maintenance treatments, I think I will just focus on ONE at a time. Just ONE. That's it. I just need to get thru ONE. And then I'll be ONE closer to the finish line. Ok. Cool. THAT I can wrap my head around!
Thank you, Denise and Devinder and Chris for taking super fantastic care of me today....
That's a BIG bag of Rituxan! It took 3 hours to administer. BUH BYE LYMPHOMA!
I just got a call from Dr. Kritz. He presented my case to a board of Oncologists to make sure maintenance Rituxan was the best route to take. There is also an option to do radiation. The board consensus was NO radiation. YAY!