Tag: cancer

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.

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.

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.

Going Home

.Reading time 6 minutes.

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.

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

.Reading time 2 minutes.

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…