Tag: double hit lymphoma

5 years

.Reading time 3 minutes.

on August 17th 2022 I celebrated 5 years of remission. My oncologist didn’t think I would make it to see one year. But I never let that get in my head. I really think the worst part of having cancer was what saved my life, but that’s a story for another day. I look back on these 5 years and see all the blessings that came out of such a dark time. All the family members who spent hours at the hospital. All the neighbors who stepped up to help my family and friends who were there for random texts and phone calls. There was so much love and kindness. Times when things are at their worst are the times you see the good in people. Even random people. I remember I was in the grocery store one day and a man stopped and asked if he could pray for me, and he did right there in the store, holding my hand. At the time I thought, boy I must look really bad, in all fairness I had no hair and looked like a skeleton. I had a man at the hospital also in the treatment center walking by put his hand on my shoulder and wish me luck with everything. I have carried all the goodness and love with me and spread it around in the work I do everyday. I really believe that in suffering through difficult times we learn strength and understanding in a way that we probably wouldn’t have otherwise. There is wisdom to be gained in struggle and struggling to survive is a great teacher. For me I truly learned patience and contentment in simple everyday things. I was unable to walk for a period of time and in a wheelchair I was unable to leave the house because of needing to be hooked to a machine and I was unable to eat regular food for 5 months. All of these struggles taught me that life can be really hard, harder than relationship troubles harder than financial problems, truly to the core of human existence hard. Making it through all of that has taught me to appreciate everything, everyday, because it’s truly a gift.

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.

Initial Side Effects of Chemo

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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

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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…

Going Home

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So finally after almost 3 weeks in the hospital I got to go home. I had been so anxious to be released, it was a week before Christmas and my little Addy had only been to visit me a couple times and was really having a hard time. I had developed lymphedema in my legs because of all the fluid that had been building up. I was wheeled out to my mom who was waiting in the car with Addy in the back seat. I was so happy to be out of the hospital and all I wanted to do was go Christmas shopping. We went to mall straight away. I kept telling myself I was fine and I could do this, unfortunately my body disagreed. Going up the stairs was exhausting I had lost 30 lbs while I was in the hospital and carrying extra fluid in my legs made it feel like I had weights on my ankles. Not to mention having cancer eating you every minute of every day takes a toll on your energy.

I made it through the mall but it was not easy and I actually didn’t have the energy to stand in line to even buy anything. We ended up just going home, but I was determined to try again! Being home felt so nice. I decided that I was just going to live on my parents couch and Addy got their spare bedroom. I had been living next door on the same property but I knew I was going to need a lot of help and I am so blessed to have the most amazing parents. I never had to ask them for help they just seemed to know that I couldn’t do this by myself.

Second attempt at the mall; this time we went to the mall near our house, no stairs! However, I still couldn’t walk very far. Luckily the mall had riding carts you could rent. It was weird not to be able to walk, but Addy had fun riding on the cart with me. We were there to see Santa and do a little shopping. We make it to Santa Clause, Addy sat on his lap and he asked what she wanted for Christmas. She just burst into tears, he asked if it was her first time seeing Santa? I told him no, but that she might be having a hard time because I had just come home from the hospital, he said he hoped I was ok and I struggled to say I have cancer.

(I still can’t tell this story without crying) Addy calmed down and took a picture with Santa. We went to pay for the pictures after it came out of the printer and the elf at the register said “it’s already taken care of, Santa wanted to give you an early Christmas gift.” My mom and I both lost it right there in the mall, we thanked Santa through our tears and headed home.

On the way home we listened to Christmas music. The Trans-Siberian Orchestra, the Christmas Canon song came on, I tried holding my breath so I wouldn’t cry but the tears just started streaming, I heard my mom sniffle, I couldn’t look at her. Moments like this you think about things like, is this going to be my last Christmas? Will this be the last time I get to take Addy to see Santa? Should we go to the mountains to play in the snow because I might not ever get to see snow again. I wasn’t afraid, but I wasn’t ready for it to be over.

I went Christmas shopping again, this time without Addy and my mom. My boyfriend at the time took me because everyone had agreed, except for me, that I couldn’t drive by myself or go anywhere alone. I was able to walk a little bit better, it was the day before Christmas eve. I was just walking through the store looking at kids stuff and this woman walks up to me and says “you look like you could use a little Christmas miracle” and hands me a card and walks away, I open it and it’s a $50 gift card, and there I am crying in public again.

There is so much kindness in the world, it gets over shadowed by so much of the ugliness, but I believe most people are good. Going through this made me look at people differently. You never know what someone else is going through and some people are battling things you can’t possibly imagine. It’s important to be kind, smile, hold doors open for people, do something nice for a complete stranger, you never know the impact you might have on someone else’s life.

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.