Tag: non hodgkin's 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.

Initial Side Effects of Chemo

.Reading time 7 minutes.

After chemo treatment I started feeling sick to my stomach. It was hard to find anything I wanted to eat. I didn’t have the taste bud issues that many people experience, initially, but nothing sounded good. I felt drained and tired. I was blessed to have a lot of support from my family so I was able to just lay on the couch. Addy and I would snuggle up and watch movies, or read books, or binge watch kids series. We both loved the show Jesse and Liv and Maddie, I can still sing the theme songs word for word.

My hair started shedding pretty badly within the first week. It didn’t fall out in clumps, but I would wake up in the morning and find strands all over my pillow. It was itchy and I felt like it was obviously going to get to the point where it was going to be gone. So I decided to cut it really short, like a boys haircut. That lasted about a week because the shorter it gets the more itchy it gets when it falls out. So I decided just to shave it off. My mom came in with clippers and we just went for it. Addy came in while we were shaving my head and burst into tears, that was the hardest part, I honestly couldn’t have cared less about my hair at that point. Thankfully I was blessed with a decent shaped head and I was super skinny due to the cancer, so I kind of looked like a sick Sinead O’Connor. It felt so much better to just have a bare head! Although, I was not confident enough to just walk around like that, I still wanted to look normal in public.

I ordered a lot of wigs, but I didn’t spend a ton of money on them. I looked at real hair wigs but they were really expensive, like upwards of five hundred dollars. If I was going to be bald forever I probably would’ve considered it, but being bald from chemo is temporary for most people. I recommend looking at places locally like hair shops and if you’re an Amazon Prime member they’re a good place to get wigs at reasonable prices as well. I also ordered a lot of head scarves, although you can use any kind of scarf on your head, the scarves designed for chemo patients really work well. They wrap around your head and have little ties in the back and you don’t get weird little wings on the sides like you might with just a basic scarf. I liked the chemo hats with sparkles and pretty designs, it makes not having hair fun and helps you still feel pretty, which to me is important because it helps you feel better.

I recommend lots of cotton knits, soft stretchy material for hats, scarves and clothing. I was tired a lot and being in comfortable soft clothing means you can nap anytime and be comfy. I lived in stretch pants and tank tops and hoodies. I was down to about 120lbs, which wasn’t super skinny for my height, I’m only 5′ 3 but I didn’t look healthy, I looked sick, and I was losing about 2lbs a week.

That brings me to food. I wanted to eat, but nothing sounded good most of the time. There were a couple things that almost always sounded good, pot stickers and egg flower soup. I could only eat 3 or 4 pot stickers, but I could eat a whole cup of egg flower soup. You can buy egg flower soup mix in the grocery stores, or you can make it yourself. It’s typically 2 cups of chicken broth, about a tablespoon of frozen peas and carrots, you bring that to a boil, beat an egg and slowly stir it in, you can add a little sesame oil to make it a little more interesting. It’s easy to make, eat and digest and has a little bit of protein. I probably had that soup every other day when I was sick.

So the first 2 weeks I had shaved my head ordered a couple wigs and some head scarves. I was getting sick to my stomach every day and had no energy. But I felt like I could handle this. Then the phone rang, it was my oncologist, When the head of oncology calls you at home in the evening it’s never good news.

I had no idea that when they biopsy a tumor they put it in a petri dish and watch it grow. Apparently mine had been growing like crazy, more so than a regular strain of B cell lymphoma. They had done some more tests on the tumor and discovered something awful. I had double hit lymphoma. That’s when everything changed. Chemo was now going to be in the hospital, 5 days straight of infusion, intrathecal chemotherapy, that means spinal tap or lumbar puncture and possible blood transfusions.

Welcome to R-EPOCH with Methotrexate. I don’t think I can handles this.

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…

Getting a Port and a bone marrow biopsy

.Reading time 5 minutes.

So once you decide to get chemotherapy you usually have the option of getting a port put in your chest or receiving chemo through an IV. I decided to get a port. A port is a small device that has a tube that goes directly into a vein in your neck, it is about the size of a quarter and typically it is placed just under the skin on one side of your chest. Blood draws are done through the port, as well as chemotherapy. Once again I am given conscious sedation and the placement of the port goes off without any complications, thanks in part to my dad making it very clear to the surgeon that I needed a lot of drugs.

At this point it is important to note that I believe having an advocate with you during all procedures is extremely important. My dad was my advocate and was with me during almost every single procedure and when I had to be hospitalized, which happened quite often. I had a nurse tell me once “you should always have someone with you to make sure we don’t kill you” and although this might seem unprofessional, after going through this journey, I agree 100% and found her honesty refreshing.

After the port was placed I was wheeled back to my room and shortly afterwards there was a new doctor in my room with a nurse and to my surprise I was going to have a bone marrow biopsy. I didn’t know what this meant, but let me tell you, if you are ever presented with this unfortunate situation make sure you demand lots of drugs. I can only conclude that this doctor thought I was still drugged up enough from the previous procedure that I didn’t need any more drugs to keep me from feeling anything. But she was wrong….I’m laying in my hospital bed and the doctor pulls up my gown to expose my hip, she makes an incision in my hip with a long scalpel all the way to my bone, and I start crying and repeatedly telling her “I can feel that.” She then takes, what my dad later described as a dent puller and drills into my bone while the nurse holds me down and I scream and cry. All my dad could do was keep telling me it was almost over. This is one of the worst things I had experienced thus far. After it was over the nurses left me alone the rest of the evening, apparently they could here me screaming through the door and decided I just needed to rest. The next day my oncologist came to visit me I told him I never want to see that doctor again! He kind of smiled and said “ya I heard that didn’t go very well.”

One thing that going through all this has taught me is that you have to be your own advocate and defender, as well as having someone with you to speak up when you can’t, or say things you’re not comfortable saying. On this journey there were multiple times that I would say “I don’t want that nurse again” or “I’m not doing that” and although it might seem strange because most of us are raised with doctors being authority figures it’s important to listen to your instincts. But keep in mind, sometimes it doesn’t matter that you don’t want to do something, as I also learned, there are times you just have to accept that there are scary things on this journey and you are going to have grin and bare it.

The first 2 weeks

.Reading time 7 minutes.

So I guess I should start by saying before I got cancer I was a healthy person. So being admitted to the hospital was weird especially because I knew something was really wrong, but I felt a strange sense of peace. I was anemic at this point and had to be put on IV fluids. I don’t like needles! So I tried to argue with the nurse and told her I don’t want an IV, as if that was an option at this point. So she brought in a specialist in placing IV’s who told me that her husband was also terrified of needles and promised I wouldn’t feel a thing. I let her do it and she kept her promise, I didn’t feel anything. I also needed to have my stomach drained because the mass that had been growing there caused fluid to develop in my abdomen. Warning this is gross!

Before you have a procedure like an MRI or a biopsy or really anything where you have to be sedated you’re not allowed to eat. So it is my second day in the hospital and I still haven’t been able to eat or drink anything, ice chips will become your saving grace during these times. Day 2, I am taken into an operating room and am put under what they call conscious sedation. Basically that means although you aren’t supposed to feel anything you’re awake and can see it. These types of drugs are administered through an IV and typically you get a little gas through an oxygen mask. So I’m in an operating room laying on the table and can’t speak or move. I can see the nurse come over with what looked like a 12 inch needle and a tube, I can feel something go into my abdomen. Not pain but pressure, a few minutes later he walks away with a large container, imagine a juice pitcher, full of dark colored fluid, told you this was gross. At this point I lose consciousness, I was also having a biopsy on the tumor in my abdomen. I’m assuming that the needle was probably for the biopsy and the tube was used to drain the fluid. Either way gross!

I wake up as I’m going down the hall back to my room. I felt a little better because all of the fluid that had been building was putting pressure on my stomach. I get back to my room, it’s a nice room for a hospital. I’m on the corner 12 stories up, with a view of the city of Seattle, it’s a large room and I don’t have to share it with anyone. A nurse comes in to check on me and informs me that I can now eat something and hands me a menu. Hospital food is normally not very good but when you haven’t eaten in 2 days it’s a 5 star dining experience. I order a greek plate, which has hummus and pita bread and olives and celery sticks and cucumber and yogurt dip. I was able to eat about 2 pieces of pita bread and a couple olives. My relationship with vomiting became a normal part of life for the next year and a half. We’ll get to that later….

I am a rebellious person and although I wasn’t supposed to I needed a shower and thought I might feel better afterwards. Taking a shower attached to an IV is uncomfortable at best, I managed to wash up and made the mistake of trying to wash my hair which was still long, down to my lower back. Being anemic means your body is struggling to function normally, so when I got out of the shower I couldn’t get warm, my boyfriend at the time finally arrived around 9:30 pm, late as always. But I convinced him to let me sleep on the guest cot with him instead of in my hospital bed because I needed his body heat to stay warm. I slept like crap, I still couldn’t get warm and at this point in my journey I was still very reluctant to call the nurses for anything, especially when I had gone against their advice and taken a shower. I was also in pain but didn’t want to tell anyone out of fear it would spark more intrusive procedures. The tumor in my abdomen was at least the size of a grapefruit. I woke up the following morning and climbed back into my hospital bed, the nurse came in to check my vitals and said a doctor would be coming in to talk to me later in the day.

Around 10:30 in the morning a man walks in, he’s wearing a Christmas sweater with a unicorn on it and unicorn socks. He sits down and introduces himself as John Pagel. He’s the head oncologist in the blood cancers and hematologic disorders department of the hospital. He says “I have good news, you don’t have ovarian cancer, you have non hodgkins lymphoma and it’s treatable.” I felt a little relief and reassured by his style choice, no one trying to prove anything would dress like that….

Symptoms of non-hodgkin’s lymphoma

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The symptoms I’m going to talk about are symptoms that I experienced and by no means are a complete list of symptoms that are possible.

My symptoms started long before my diagnosis. I started experiencing abdominal pain in my lower abdomen first. I started losing weight, Then severe back and neck pain followed. I knew something was wrong but I was scared to go to the doctor, so i put it off until I was losing weight and noticed a bulge in my lower abdomen as well as a bump on my back right by my rib cage. I finally went to the emergency room. The doctors knew that something was very wrong but I didn’t want stay at that hospital so I left before they could do anything besides an ultra sound. I asked them to refer me for imaging at a different hospital but they refused, So I ended up going to a different hospital to the ER and going through more blood tests and imaging. The ER doctor asked me to stay in the hospital but I refused. I just wasn’t prepared to commit to what I knew was going to be a long hard fight. The following week I got a call from Swedish medical center in Seattle, the doctor from the ER at Overlake where I had been the previous Friday made a call and referred me to Swedish for care. So I decided to go in and made an appointment to see a gynecologist there, at this point all 3 doctors I had seen thought I had ovarian cancer, although nothing beyond blood tests and ultrasounds had been done. So I went in for my appointment and didn’t even get undressed, the doctor took once look at my abdomen and my blood work and admitted me to the hospital. And thats where my story begins…