Liz & Lymphoma

Hi, I'm Liz. On November 4, 2015 I was diagnosed with Stage 3 Hodgkin Lymphoma. This is my story.

[lizandlymphoma]

1 year cancer free mothafuckassssss 🎉💪🏼🎉 One year ago today was my last chemo 👋🏼 I did it!!! One more year to go and I'll be considered cured. 🤞🏼S/O to my mom, dad and brother for their constant love and support. I could not have made it through all this without the three of them by my side. I've looked my demons in the face and fuck if I'm not stronger for it. GO ME. GO ME. I DID IT. GO ME.

[lizandlymphoma]

One year ago I shaved my head after losing my hair to chemo. It has been...well to put it simply, it has been a rough fuckin year. I now know that just like many animals in the wild, we must shed our skin in order to grow. My #chemocurls are wild and un-tamely, but I love them. Here's to another year of growth- both on my head and in my soul. And in the name of Destiny's Child: I'm a survivor. #cancersucks #hodgkinlymphoma

[lizandlymphoma]

Cancer changes you deeply, yet everyone around you expects you to be exactly the same as you were before.

[lizandlymphoma]

Why do people think that telling me how much my hair has grown in is a compliment? Remarking on my hair at all really should not be a topic of discussion. Saying something like "wow your hair is really getting thick" is not a compliment, it's a reminder. My hair being thick isn't a source of joy for me. It's a daily reminder of the hell I just went through, something I'd really like not to think about more than I already have to. You complimenting my hair is a cop-out honestly. It's the easiest thing to bring up and just makes me think that you don't really care to get to know the more pressing issues of what I'm dealing with. Like you don't want to take the time and ask how I myself am really doing. So you take the easy road and point to something I have zero control over. My hair's coming in nicely? Trust me, I know.

[lizandlymphoma]

How fitting...September is Lymphoma awareness month and I've just found a lymph node under my arm. I have a call in to my doctor to see what he thinks...I am both extremely freaked out but also not sure I should be worried. Lymphoma doesn't usually come back that quickly. I should be okay. I hope.

[lizandlymphoma]

I hate never really knowing how I'm going to feel from one day to the next. I've had a few days in a row of barely making it out of bed. And I feel like people are thinking that I'm just lazy and fat and have no ambition. But honestly, I swear to you if I could not feel so up and down and up again, I wouldn't. It's so weird waking up and trying to gauge how I'll feel that day. And for the people who are on the side of "just force yourself to get up and be happy" y'all can go jump right in the lake. I can't force myself to be in a crap mood, so how can you expect me to be able to make myself be in a good one. Summer is my favorite season, and we have had a beautiful summer here in Wisconsin. I have spent the majority of it inside, in my room, on my bed. If that doesn't make you realize what I'm going through I guess nothing can.

[lizandlymphoma]

This website has lots of great information about how best to get back into the professional environment after surviving cancer.

The time has come that I can no longer justify being out of a job. It has been almost one full year since I was a nanny in Nashville, and I’ve been having a lot of anxiety about finding a job. I’ve been really stressed out about what kind of job I can do well and how to even begin to search for one. If you’re in a similar situation as myself, I’d recommend scrolling through this website. It has some good tips for resumes and also educated me a bit on the types of questions that interviewers and employers can ask RE: your cancer.

[lizandlymphoma]

Check out the gnarly bruise I developed over the last few days at the sight of my port scar. For those of you who don’t know, that’s what a port looks like (top right image) and the base is just slightly larger than a quarter. It gets implanted in your chest (mine was on my right) and hooks up into a central vein just below your collarbone. It has a tube that runs through said vein all the way down to an artery near your belly button. Ports are typically used in hematology patients, and are popular because chemo drugs can be injected and blood samples can be drawn many times, typically with less discomfort than a “needle stick” IV occurring each time. That being said, they are uncomfortable as hell!! I got used to mine pretty quickly, once I stopped worrying that I was bleeding out. (That can happen if it isn’t placed properly in the artery in the stomach.) But being used to something and being comfortable with something are two VERY different things. I couldn’t sleep a certain way while it was in because it would push up against my port and cause me pain and discomfort. I couldn’t reach my right arm over my left shoulder with it in. And it hurt. It felt like a bee sting for a while after chemo. So as you can probably guess…I am SO glad to be rid of that thing. If this post makes you uncomfortable, that is unfortunate, but it’s important to me to share the realities I have faced and am still facing today.

[lizandlymphoma]

Transitioning to Posttreatment Liz

I was just struck with some serious inspiration and I want to share it with you all here. 

I don’t know exactly how many people keep up with my blog, I know I have a few solid regular followers (shout out to y’all) but I think I didn’t do that great of a job posting on here regularly during treatment. I mean, I did, and if you consider how shitty I felt for months on end, it’s not super surprising to me that I struggled to keep up here. 

SO, what I want to do now, is have this blog as a platform to reach out to people who are currently or have at one point, gone through something similar to what I have! I have noticed recently that there are a handful of predominant organizations and websites dedicated to cancer, and some especially for young-adult cancer. However, I’ve really struggled to find a community specific to us young’ins in pre/current/post treatment of Hodgkin Lymphoma. 

I have found, even just here on tumblr, SO many kids posting about their lives with and after cancer, and in specific, Lymphoma. I want to find a way to harvest all that and bring together a community that people my age can come to and connect with. A place for support, information, happiness and positivity. 

I have been struggling with finding a purpose post-cancer- I feel like I might have finally found it. I have always been extremely fond of, and drawn to, the idea of giving back, of helping others. I think this is exactly the way I could do it, and finally feel fulfilled. Personally, I just don’t think you go through cancer and come out of it able to just walk away. Part of that feeling comes from my age. Like I said last week, I’m glad to have had cancer at 22. I’ve got the rest of my life ahead of me. And it would almost feel like an insult to those who don’t, to not give back in whatever way I can.

I’m still figuring out exactly how this is going to happen. But tumblr can be an incredibly effective platform and community, so I feel positive about starting out here. 

Let me know what you think, friends! I’m so very eager to get this up and running effectively, so any contributions, suggestions, or ideas of any kind are always gladly taken. I just got struck with the idea literally one minute before writing this, so, as is anything that comes with cancer, the road is just beginning to be paved.

I will leave you with the song that inspired this all to come to fruition:

Alabama Shakes, “Hold On”

I was particularly struck by the first verse

“Bless my heart, bless my soul. Didn't think I'd make it to 22 years old. There must be someone up above sayin', Come on, Brittany, you got to come on up. You got to hold on...”

Happy Monday, and much love,

Liz

[lizandlymphoma]

The Long and Winding Road

It’s now been 7 long months since I was diagnosed with Lymphoma, but my story really began all the way back in August, 10 months ago. August is when I first started to feel sick, noticed the lump under my arm, and went to the doctor for the first time. So really, it’s been 10 months since I began this journey of mine.

In this time I’ve had surgeries, scans of all sorts, been pumped with poison, attended physical therapy, regular therapy, and what feels like more various doctor appointments than really I know how high to count. I think, if I can brag a little bit, that I have handled all of this rather gracefully. I’ve gone through some huge changes and really traumatizing things for my health, all while trying to do so with a smile on my face. I’ve found that happiness really is the path I’d much rather be on.

To be honest, the last 10 months seem like a blur of all those things listed above. I don’t remember many specific events, but rather the way I’ve felt throughout them all, and that “oh yeah, I did go to the dentist the day before my first chemo” or “that’s right, my nurse’s name was Liz, too!”. It all kind of comes back to me in flashes- I feel a little bit like Jason Bourne when he’s trying to piece together his identity. 

Anyway, to say that this has been a “long journey” feels like, to me, the biggest understatement of the century. What’s more, it’s not even close to being over yet. So, I prefer to think of it as a “long and winding road” as The Beatles so elegantly put it. It’ll always be there, and just when I think I get close to the end, the Road will continue on. 

I was struck by something my doctor said to me yesterday, “I’ll be your doctor for a long time”. I guess I hadn’t really thought of it in that way- such a permanent way. I will be going back to Dr. Shah for years to come, hopefully in only a “social check-up” way, but I will be seeing him into my adult life and beyond. We talked about my 5 and 10 year visits, and to think of a life 10 years away from cancer blew my mind. I’ve been so largely focused on getting through each individual day, that looking into the future with any kind of distance is kind of exciting to do. In  the next 10 years I can do whatever the hell I want, and by then I’ll only be 32. To me, that’s totally kick-ass. I’m glad I got cancer when I did, I have a whole life ahead of me to look forward to.

There are still a few things on my radar... tomorrow I am having breast surgery. It sounds scary to say, I think every woman worries about a surgery like this happening in her lifetime. A few months back my doctor spotted a lump in my left breast, after examining a recent PET scan I had. I’ve had to wait until chemo was over, and my white blood cells were back to a safe count before I could have the surgery to get it removed. Yesterday both of those boxes were officially checked, and I got the go-ahead from my doctor. I’ve met with my surgeon and she confirmed what the ultrasound doctor, and mine have said, that they are 99.99% sure it is not malignant...phew. However, it’s fairly large and has been causing me discomfort and pain, so I say the sooner it is out of me, the better! 

So, as you can see...the “long and winding road” is moving on, still. 

[lizandlymphoma]

KO!

Last week was my 12th and FINAL chemo. I can’t believe it’s already over. I swear I blinked and it was done. Of course I say that now that I’m out of the thick of it all, but in reality that was the longest six months of my life. However, I am proud to say that I have officially been deemed IN REMISSION!

It was looking for a while like I was going to need a small amount of radiation, but after consulting with a handful of other Oncologists and Hematologists about me, my doctor felt it was not necessary!! I am relieved that I won’t have to do so, as they were going to have to radiate part of my breast...not something I wanted to happen.

So, yes...I am in remission. That feels pretty great to say, but honestly I don’t think it has fully set in yet. I’m still feeling kind of crummy from chemo last week so I think once I’m in a better condition I will have the capacity to process it all.

I still have a long, long road ahead of me. I’ve got a list of appointments coming up in the next two weeks and I’m not planning on heading back into “real-life” any time soon. But it does feel pretty cool to say that I am a CANCER SURVIVOR. Pretty bad-ass.

[lizandlymphoma]

Purple flower series I painted for a few of my doctors and nurses at Froedtert. Tomorrow is my last chemo and I wanted to give them something to show my appreciation. The flowers signify regrowth and are purple for #HodgkinLymphoma. Watercolor on heavy weight paper

[lizandlymphoma]

Decided it was time to stop looking like a deranged scientist. My first hair cut since the big chop!

[lizandlymphoma]

I've been having some stomach issues lately and my doctor thinks it's a good idea to stay away from gluten. That's right, you heard me, gluten free. I am so grumpy!!!

[lizandlymphoma]

Spending this beautiful spring day breaking in my watercolor pencils and enjoying the sunshine

[cosmicbananapeel]

Things Robbed Of Me By Dastardly Cancer

I used to be able to take pills. Give me a pair of Lemsip and they’d be gone with barely half an inch of water. Now I have to smuggle speck-sized pills in spoons of yoghurt or else I vomit the rest of it up.

I used to have really nice thick hair and eyebrows. I really liked my hair. I hadn’t had short hair since I was a child. Now it’s brown smoke.

I used to sort of have direction. I mean I was drifting out of control but at least I had a job and a place of my own. Now I’ve been smacked off track and I’m simply floating with nowhere to go and no means to get there.

What am I going to do?

[lizandlymphoma]

Getting diagnosed with cancer was kind of like getting to hit a "redo" button on your life...you get this weird second chance on life type of outlook. And while that's awesome, evading death, it's also really, really terrifying. Quite simple put the world is my oyster... You get this rebirth and all I want is for my lack of direction to at least point me in the general direction. I haven't been quite that lucky yet. So I just kind of float through my days in a ball of senseless wonder. At lest I know I'm not the only one feeling like this.

[lizandlymphoma]

I just purchased my first wig! For a while I wasn't sure if I would want one or not, but I figured that it would be something fun to have even if I don't wear it all the time. Can't wait to share it with you!