Tag: lymphoma

Quiet voices

.Reading time 7 minutes.

Writing about cancer is harder than I thought. I thought I would be able to convey all of the pain and emotion that I experienced while writing about the factual and detailed accounts of my experiences, but I don’t feel that’s happening. I reread my posts and think to myself, well that was short and emotionless. I’ve noticed that even when talking to people about my experience I tend to keep it short. I guess I don’t want to sound like a whiner or like cancer makes me special. But for some reason when I see someone who I haven’t seen in awhile or at family events it comes up and I feel like people are probably thinking, “here we go”. Cancer doesn’t define me, but it’s definitely changed my life. Sometimes it takes an extreme event to make you look at your life from a different perspective.

Growing up I was really close to my grandparents and I do believe in spriritual connections to our ancestors. When my brother and I were young we lived with my grandparents for a few years after my parents divorce, We went to their house every day before and after school after my mom remarried. We have always been close. When my Grandad passed away I had a dream that the phone rang and I was told he died, a few minutes later I woke up to the phone ringing and it was my uncle, calling to tell my mom that my Grandad had passed. The following night my Grandad came to me in a dream and hugged me as I sobbed and told me it was going to be ok, I woke up with tears streaming down my face, and to this day I can’t tell this story without crying. Losing my granddad was really hard on everyone but most of all my Gram. After he passed she didn’t want to be in the house alone and she just kind of lost her gusto, My Gram passed a few years later, one of the things she always said was “getting old is not for the weak”. My Grandparents both passed away close to thanksgiving and the holidays have never been the same without them. Christmas time at their house was always magical, the house always smelled like steaming turkey and pumpkin pie and my gram would make krumkake. Krumkake is a rolled cookie that is made one at a time on a cookie iron and if you’ve ever made it, you know its truly a labor of love. The living room would be wall to wall presents for everyone and the excitement of looking at all those presents and trying to see which box was for who and wondering what was in all of those packages was so exciting. Wrapping paper would pile into garbage bags as all of the presents were unwrapped, bows and wrappeing paper balls would be thrown across the living room at eachother. It was the best part of my childhood and even as I got older the magic was always there. My grandparents house was always home and when my gram decided to sell it, it was devestating. I’ve driven by their house a few times since and the feelings of sadness and loss are overwhelming. All of this to say, we were really close.

When I started experiencing symptoms but didn’t want to go into the hospital I had a dream. In my dream my Gram came to me and said “soon you’re going to be here with us” and she hugged me and I sobbed hysterically and I remember the feeling of dread and being terrified. My Gram had never come to me in a dream and now here she is trying to make me face something that I didn’t want to see. I wanted to pretend it would go away if I drank kombucha and didn’t eat sugar. That dream was a lightening strike and I couldn’t look away. When I told my parents about the dream, I told them with tears streaming down my face, but I lied. I told them that my gram told me I needed to get help and that it was going to be ok, I lied to them because I didn’t want them to feel the dread and fear that I felt. But honestly, that dream really pushed me into accepting the fact that this was not going to just go away. I had to do something or I was going to die, There are so many things that happen in life that might seem insignificant or even impossible but these little moments can lead our steps in one direction or another and can truly change the trajectory of the path we’re on. After I started getting treatment I told my dad the truth about the dream, I don’t know if I’ve ever cried that hard in my life. In that moment there was just a quiet understanding between the two of us, he didn’t try to dismiss my experience he just listened and let me cry. I needed to be afraid, I needed that to push me into getting treatment.

This has been a random post and I have been trying to focus on the factual experiences of my journey with cancer but so much of battling cancer is emotional. So I’m going to try to let things out a little more, I need to be able to express the pain and emotions that were such a huge part of this journey.

R Epoch

.Reading time 4 minutes.

So like I said nothing goes as planned. The first time I went in to the hospital, in house as they like to call it, I was so upset about having to be there, and having to have this treatment. My dad went with me, we had a small bag packed. The nice thing is you don’t have to wear a gown, you can wear your own clothes. I always picked soft leggings, a tank top and a zip up sweatshirt, that way all you have to do is take off the sweatshirt for a nurse to be able to access your port. Plus I hate gowns! Talk about degrading. So we go in and the room is small there’s a recliner for my dad and a hospital bed and a bathroom. When you’re going through chemo you will almost always have your own room because you have no immune system. So the nurse comes in and accesses my port, again always say yes to lidocaine. They start with 1 bag of saline and a bag of chemotherapy, it takes 4 hours to complete. I was anxious so I didn’t sleep this time. Once the bag was done they kept coming in to check on me, they are checking for a reaction. I was waiting for a new bag to start but the nurse said they wouldn’t be starting one until the next day, um ok can I leave then? Nope! So frustrating! So the next day I get chemo all day, slow drip, and for the next 2 days, so what I was told was that I would be in house for 3 days, but it was actually 5 days and oh well if you want to go home and this wasn’t what you were told, sorry, your connected to a tube and a machine. One night a nurse came in with a giant syringe full of bright red fluid. This is rituximab, it can be extremely dangerous because of the reactions some people have to it, so the first time you get it, it’s delivered by hand extremely slowly under the supervision of a nurse, so she sat next to my bed and slowly injected this bright red fluid into my iv tube. My dad and I sat there talking to her about where she was from etc. Afterwards I was really tired, but didn’t have a bad reaction so that was the only time that drug would be delivered like that, from there on out it was put in a brown IV bag, apparently it’s sensitive to light. 24 more hours in the hospital, and although I was terrified the whole time about the spinal tap, they decided not to do it this time. I was so relieved. Finally after 5 days I got to check out. I would have to go back in 16 days but you can’t focus on that. Time to go home and spend the next week throwing up pretty much all day and being exhausted. Thank God I had my parents, I wouldn’t have made it without them.

The power of words

.Reading time 6 minutes.

When I had cancer I never had “the talk,” like they show in movies and tv. The scene where your oncologist sits down with you in an office and says “you have stage ___ cancer and your chances of survival are ___. He called one day and said you have a more aggressive type of lymphoma than we first thought and its going to take more chemo and prolonged stays in the hospital to adminster the chemo. I was pissed! I questioned everything. is this really necessary? What do you mean spinal injections? What if I say no?

No was not an option…I had to think of Addy, I had to do everything I could to beat this. I used to have dreams that the hopsital was trying to trap me inside and someone on the outside was trying to take her away. Those thoughts and that stress was scarier than anything that was actually going on.

I knew I was really sick and obviously cancer can kill you, but I never sat there thinking “oh my god I have cancer and I could die”. My oncologist told me once “you have to own this” and I thought own what? I never thought I was going to die.

But words are a powerful thing and sometimes they hit you like a cement truck. At a visit to my oncologist about 5 months into treatment, he just came out of left field and said, “you need to understand that there is a real possiblity that you will die from this” I just nodded my head. My dad was with me, we left a few minutes later and on our drive home we were both silent. He reached over and grabbed my hand and said “I know thats not what you were expecting to hear” and I just burst into tears” after months of awful appointments and non stop vomiting and fatigue and fevers and shaking and not being able to do anything because I had no immune system, how could he put that in my head! I felt off all day, I had trouble sleeping that night. It was like he planted a seed, and it could grow…

I couldn’t let that happen, I can’t be afraid all the time. So I just put it out of my head. I found shows to binge watch with Addy, and focused on sleeping and took my pain pills, which honestly probably helped me cope with a lot more than just pain. They made me sleepy so I napped a lot which is really important when your body is trying to kill you.

Today was my 3 and a half year remission anniversary and my 6 month checkup with my oncologist. Everytime I see him now he gets emotional and tells me what a miracle I am. Today I asked him how close I actually was to dying, he put his thumb and forefinger together in a pinch and said that close. He said that most people who come in with symptoms and disease as advanced as mine was don’t survive. I feel lucky, but I also think it helped that I never internalized the fear of dying, I tried to embrace the changes in my body, I looked like a skeleton but it was fun to shop because all the clothes that I could never wear before fit perfect now. I was light as a feather and I could wear a different wig everyday or a pretty head scarf. I bought rainbow wigs and blue and black wigs and pink wigs, I still have them, I can’t wear them anymore because my hair has grown back really thick but they work great for Addy for halloween or just goofing around.

This post has gotten off track but in truth I have found blogging to be a much easier way to talk about cancer than actually verbalizing it. For some reason when I try to talk about it out loud I stumble over my words and have a hard time articulating what I’m trying to say.

Today after my appointment I was really emotional. On the drive home I thought of all the things that I went through, as much as I could remember, and I thought about how much life has changed since then. I don’t have to go back to see my oncologist for an entire year, and he told me today that if my disease was going to come back he thinks it would have already.

So today is a good day and I am grateful for so many things.