Tag: chemotherapy

methotrexate

.Reading time 2 minutes.

Oh how I fought against this one. Methotrexate is the drug that they injected directly into my spine. I was so upset when they told me about it that I cried all day, I tried to justify to my family why I shouldn’t have to do this. It wasn’t fair! I was so terrified. Having cancer is degrading and demoralizing because your choice becomes the treatment your doctor says you have to have to survive or death. Obviously it’s completely counterintuitive to choose death over the possibility of survival. I had to survive for Addy.

So into the hospital I go again. This time all of the chemo is delivered through IV except for the methotrexate. The doctor who had done my bone marrow biopsy walks in with another nurse. An intense feeling of dread comes over me. I tell them I need drugs or I’m not doing this. So they give me dilaudid and Ativan. I lay down on my hospital bed and pull my tank top up and curl into a fetal position and look at my dad. As soon as we make eye contact he says “stop! She needs more drugs” so they actually did stop and gave me more drugs, we wait a couple more minutes and they begin the procedure. Thanks to my dad speaking up I felt nothing except kind of a weird sensation. When they do this procedure they take a large syringe with a long needle and remove some spinal fluid and replace it with the methotrexate. Afterwards you are supposed to stay laying down for a few hours so that the fluid goes to your brain. They monitor you closely for headaches or any other adverse reactions. This ritual continued for the next 5 months every 16 days I would have to go in for chemo and a spinal tap of methotrexate. It was not fun but my advice to anyone is make sure you ask for drugs to help you through it. Going through all this is and enough don’t make it harder by suffering through painful procedures, it is your doctors job to keep you comfortable.

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.

First Chemo

.Reading time 8 minutes.

I made it through the holidays. I cut my hair, which had been almost to my waist, all the way up to my chin in preparation for it to start falling out. I was surprised how much I loved my short hair, my hair had been long most of my life. I was still feeling weak, but I made it to a family Christmas party and even played a few games of pool while I was there. I celebrated the new year and just a few days after was my first chemo treatment.

Chemotherapy just sounds scary! What you don’t realize going in is that the nurses are amazing and they are already preparing for how scared and anxious you may be, not to mention preparing for any possible side affects you may have. As I mentioned before I went to Swedish Medical Center in Seattle. They have a really nice infusion center, which is where chemotherapy is administered to most patients. So I arrived in comfortable clothing, I recommend wearing a zippered sweatshirt and a tank top underneath, that way you can just take off your sweatshirt and pull your tank top off your shoulder, to allow the nurse to access your port without having to take anything off. The first thing that happens is you get blood drawn from your port. This is a process, first they clean the skin around your port and then they ask if you want lidocaine, say yes! This will numb you because next they take a 1 inch needle, that is a little thick, and is attached to a little hose or line and stick it in your port. Next they will take a syringe full of saline and flush your port and then start to take some blood. The nurse will flush your port after the blood draw and then leave the needle and the line attached and tape it to your chest and send you off to see your oncologist.

Your oncologist will check your blood work to make sure your levels are ok and check you out to make sure you’re well enough to receive your treatment and that you don’t need any additional medication while you’re there.

I met with my oncologist, everything was as expected and down I went to get my first infusion of CHOP. That is the abbreviation of my chemo regimen, it stands for cyclophosphamide, doxorubicin, vincristine, and prednisone. Don’t know why that is the abbreviation since it has nothing to do with the letters in the word CHOP. Fun stuff! All of these drugs have some wonderful side effects, some of which include hair loss, fatigue, nausea, vomiting and some other more severe side effects that are all listed in the book of paperwork you get that you are supposed to read and then sign a waiver basically saying you know the risks involved with what is about to be put into your body.

I waited nervously in the waiting room of the infusion center, needle in place and line taped to my chest. I was tired and anxious and just wanted this to be over. My name was called and I was led back to a big recliner, I had my mom with me and she was given a chair to sit in, not as comfortable looking as mine. We had a little curtained off room with a TV and a little table. The nurse had me sit down and she asked me some basic questions, name, birthday, medications I was taking and then took my temperature and blood pressure. After all the formalities, I had to wait longer because they don’t just keep your chemo infusion on ice until you get there, the pharmacist makes it to order. While I waited I was given benadryl in case I had an allergic reaction to any of the drugs. I was also hooked up to some fluid, just because the nurse figured I could use a little extra hydration. I was told there was a kitchen in the infusion center with sandwiches and snacks free to all the patients and their family members. I didn’t feel much like eating though.

Finally my bag of drugs arrived and the nurse came in with another nurse, both in full PPE. One read off my hospital bracelet while the other one verified the information in the computer and then they asked me again my name and birthday. Then they read off the label on the bag of fluid full of chemotherapy and verify its all accurate and had been signed off by my oncologist. There are times that hasn’t happened and you have to wait even longer.

So once everything is verified the nurse will clean the line attached to your port and attach it to the tube coming off the IV pole, typically there is another bag of saline that runs with the bag of chemo to dilute the drugs a little, plus it gives you a little extra hydration, most of the time you need it. The nurse will use a Y shaped attachment to connect it all together so everything is still just running into your port. The nurse will set the machine that the IV bags are attached to, to run at a certain speed and that will determine how long your infusion will take. The nurse will come and check on you every 30 minutes, he or she will check your blood pressure and ask how your feeling, even if your asleep. I slept through most of my 4 hour infusion, thank you benadryl!

I left feeling a little drained and still groggy, but I felt a little better knowing this was all I was going to have to do every 3 weeks for the next couple months. I couldn’t have been more wrong. If there is one thing I would learn going through this it’s that nothing is going to go as planned…