My Non Hodgkins Lymphoma Journey

September 7, 2020

2020 has been a whirlwind filled with goodness and unexpectedness. The biggest thing this year has brought is being diagnosed with Anaplastic Large Cell Lymphoma. I was beyond shocked when I discovered a lump in my armpit and ended up a diagnosis of cancer. I didn’t believe this was real life, but it was. I was ready to fight for the life my husband and I had created. Parker and Hadley are so young, and they need their mama to be healthy.

The road to my diagnosis was quick and slow all at the same time. In those moments, I had no idea what to expect. Many people have wondered how I got to this point as I undergo my third cycle of chemotherapy. Today I wanted to share all the things that happened in two and a half months: the good, the bad, and the ugly.

The Beginning of My Non Hodgkins Lymphoma Journey

Around May 14th:  I was in the process of weaning Hadley from breastfeeding. I wasn’t able to breastfeed Parker, so this was all new to me. Pain in my armpit started to appear, and I wasn’t sure if it was normal or not. I gave it about two weeks to see if it would go away.

May 26th: I gave my pain about two weeks to go away, but it didn’t. I decided to feel where the pain was coming from finally. What I discovered was very unexpected, a lump! Shock filled me, and I immediately told CJ. The initial thoughts that came to mind was a clogged milk-duct since I was weaning and had no idea what I was doing.

May 28: After speaking with CJ about the lump I discovered, he asked me how long it has been there. After telling him two weeks, he told me to go to the doctor. So I made an appointment with my NP to have my lump checked out. This lump was under the skin, and nothing showed on the outside. She poked and prodded me, but couldn’t make any decisions as to what was going on. The NP referred me to get an ultrasound and possibly a mammogram.

June 9: I ventured to the Christ Hospital main campus to get my ultrasound and possibly a mammogram. Going through all this during a pandemic is hard! No one was allowed to go with me. During this appointment, I wasn’t allowed to get a mammogram because I was still breastfeeding. The ultrasound showed some more answers as to what was going on underneath.

The doctor still was unable to tell me exactly what it was. He said he would have been more concerned if I wasn’t breastfeeding, which made me feel better. We needed to figure out exactly what was going on and informed me more tests were needed. I scheduled my next appointment for two days later.

June 11: I went back to Christ for my follow up appointment. My mom ended up coming with me and stayed in the waiting room. I am so glad she decided to go with me; it was a more challenging process than I thought it would be. During this doctor’s appointment, they tried to aspirate the lump to see if any fluid would come out. Unfortunately, nothing came out.

Plan B was to biopsy the lump. I didn’t look at the machine/needle they used, because it probably would have freaked me out. However, it sounded like a clicky drill, but who knows. They had to get a piece of the lump to run further tests to find out what was going on. This whole process ended up being more painful than I had anticipated.

Side note, this was the last night I breastfed Hadley. The pain in my armpit was too much, and I was worried she would harm me more accidentally.

June 17: My lump biopsy happened on a Thursday, and the didn’t have my results until the next Wednesday. My NP called me first thing in the morning to schedule an appointment for that afternoon to give me my results. My mind started running all the possibilities that it could be. My husband consoled me, saying they probably wanted to provide all test results in person, and there was no need to worry.

My appointment was scheduled for 2:00 that day, with the plan to go to the appointment by myself. Thank goodness my sister in law had called and offered to come to hang out with the kids so my husband could go with me. I will forever be grateful for that!

We went to the doctor’s appointment together, and knew we would fight together with whatever the results were! The doctor came into the room, and I could tell something wasn’t right. She then informed me they found a protein marker within the lump called CD30. The protein that is commonly found in some types of Hodgkin and Non-Hodgkin Lymphoma.

To tell you I was shocked would be an understatement. If anything, I thought it would be breast cancer or something to do in that area since the lump was found in my armpit. She then informed me I would need to meet with an oncologist and surgeon about taking out more of the tumor.

June 24: I got an appointment with the oncologist pretty quickly. After being told, my tumor had CD30; this was the most significant appointment so far. I was nervous as I didn’t know what was going to happen. Of course, this is me, so I can’t make things go smoothly.

*First, a fun fact! I am going to the same oncologist my dad went to when he was diagnosed with Non-Hodgkins Lymphoma back in 2011. It made it more comforting to go to someone who treated my dad and is doing well to this day!

*Second. At this point in the diagnosis process, I was having cold flashes, which would sometimes result in fevers. The night before my appointment, I had the worst one yet. I checked my temperature before going in, and it was normal. Well, welcome to COVID-19 days and the questions they asked. I had to answer yes to having a fever, and they even checked me in the waiting room.

My temperature ended up being elevated, but they still agreed to take me back. I was very thankful for that! I knew I hadn’t been around anyone with symptoms, and my doctor decided that I probably, in fact, didn’t have COVID, but need to be extra careful. The doctor’s meeting went great, and I had everything lined up to move onto the next steps.

After I left the oncologist appointment, I headed to get tested. It ended up being negative.

June 29: The day I met with my surgeon for a consultation. I was very thankful for this appointment CJ was allowed to go with me. The doctor checked out my lump and asked me a series of questions about everything going on. At the beginning of the meeting, he scheduled my surgery for the following week. Not going to lie; I was a bit bummed. I wanted my pain to go away.

This was when I trusted the doctor I was meeting with and told me everything I was feeling. I mentioned the fevers and my horrible pain. He looked again, and at this point, my right breast was starting to become swollen and red. After deliberating and taking more notes, we decided my surgery was going to be in two days.

The timetable was moved up due to the pain and fear that I had an infection. This gave us a slight glimmer of hope; maybe it’s not cancer and just an infection. On a positive note, it was a good thing I got COVID tested because currently, you have to have a negative test 6-7 days before surgery.

June 30: The first of so many days of fasting. I had lost a bunch of weight at this point in time, nothing sounded good, and I would forget to eat. Of course, on days I needed to fast, I was always the hungriest.

That day’s fun event was a skull to thigh positron emission tomography (PET) scan. This wasn’t bad at all! I went in, to have a radioactive dye injected into my arm, and then waited for an hour to fully circulate around my body. I sat in a nice chair that reclined, with the lights on low (a mother’s dream)! The whole scan took about 15/20 minutes to complete, and then I was off to get food!

July 1: The big day for my surgery was here! We had to arrive several hours early to prepare, and in case the surgeon was running early. All that time, I was getting more and more nervous. I would have to be put entirely under and had only had it happen a couple of other times. I turned to CJ multiple times and said, ‘Just kidding, I don’t want to do this, let’s leave.’ Ha. I was too far in, and there was no turning back.

The surgery went well, and I woke up super confused and groggy. While I was in recovery, the hospital informed me they would be keeping me overnight due to my expected pain level. The tumor in my arm was much bigger than they had anticipated it to be. They weren’t able to remove it all since some of it was on my nerves.

The hospital stay wasn’t bad. The first time staying overnight with no baby, so sleep was a lot better. I was on a liquid diet, but did get Jello! Thank goodness I only had to stay one night and was discharged the next day. I was able to FaceTime the kids and check-in. Parker was a little traumatized by me staying over and not coming home.

July 2: After being discharged from the hospital, I headed home for a couple of hours. Then it was back in the car to the oncologist appointment. My results from the biopsy weren’t in, but my scan was. The scan showed a big concentrated area near my armpit, a small bit in another spot, and my spleen was slightly enlarged. It was nice to see where the cancer was and have a visualization.

July 8: After my surgery on the 1st, I came home with a new little friend, a Jackson-Pratt drain. The drain was put in place to allow fluids to be collected without leaving a hole in my armpit packed with gauze. My new little friend took a bit to get used to. We had to drain him every couple of hours in the beginning and track to make sure it was working as expected. I ended up naming him “Bert” after one of Chris Pratt’s roles in Parks and Rec. On this beautiful day, I got to say bye to “Bert.” It was nice but a little sad.

July 9: That Thursday was a busy day. I left my house at about 9:15 am and got home around 5:30. The day was full of fasting, scans, and finally, answers. I was extra thankful for my wonderful dad, as he took me and spent the whole day with me.

The day started with a bone marrow biopsy. One thing with Non-Hodgkins lymphoma is that it can be in your bone marrow also. For this test, I was put in a ‘twilight’ state of mind, so I could still be awake during the procedure. It took place in a CT scan while I was laying on my belly. They had to stick the needle in my lower back to test. The scan was quick and painless.

The Reality Of  My Non Hodgkins Lymphoma Journey 

In between appointments, my dad and I went for coffee plus a snack. Then it was time for my oncologist appointment. This appointment was a big one, the one I could never be fully prepared for. I was told I had an official diagnosis, my chemotherapy plan, and all the drugs’ side effects.

  • My official diagnosis: Anaplastic Large Cell Lymphoma Alk Negative; Non-Hodgkins Lymphoma
  • My Chemo Treatment: Cytoxan, Adriamycin, Prednisone Pills, Adcetris
  • IV therapy every 21 days for 6 cycles
  • After all 6 cycles, I will have another PET scan and possible bone marrow transplant

July 10: Now that I knew chemo was coming, it was time to put my port in. A chemo port is an implantable device that attaches directly to your artery. Having a port is super helpful when receiving chemotherapy since they can give you all your meds into that device and don’t have to get needled pricked every time.

This procedure was supposed to be quick, painless, and under light anesthesia. I am sure by now; things don’t always go as they are supposed to in this story. As they wheeled me into the operating room after receiving my calming medicine, I proceeded to vomit. Since this happened and they weren’t sure if it would happen again, the plan changed to put me fully under. I wasn’t complaining because I would rather be oblivious to people cutting into me!

July 15: Now that I have my official diagnosis, port placed, and my first chemo was scheduled and it was time for my last test. This time it was an echocardiogram to test my heart. They needed to determine a baseline of my heart’s health before chemotherapy started, just in case anything were to happen. Let me tell you; it was one of the coolest things ever. It was a sonogram like for a baby, instead of for your heart. I just laid there watching, fascinated, and didn’t want it to end. SO CRAZY!

The First Day Of Chemo In My Non Hodgkins Lymphoma Journey

July 16: Well, the day had officially come, my first day of chemo! I was so nervous and had no idea what was about to happen. CJ and the kids were able to drop me off, which helped. Then to my surprise, ladies from my MOPS group showed up with signs, balloons, and encouragement gifts. The nurses were wonderful. I brought lots of things to do since I was there for over 3 hours with all my medicines.

It has been a very emotional couple of months. I am so glad to have answers finally and start the process of feeling better. This whole ordeal has made me grateful for the life I have. Life is short, and we need to live it the best we can! Also, trust your body and advocate for yourself. You know your body better than anybody else, and know when something isn’t right. Error on the side of caution and get things checked out, I’m glad I did!

xoxo,

Katie

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About Katie

About Katie

Katie

Welcome to my little corner of the internet! Living Amidst is a Cincinnati-based lifestyle blog. Katie is a wife, mother, and a woman fighting Non-Hodgkin's Lymphoma. This little space was created when my son was four months old and I lost who I was. Living Amidst became my corner of the internet to find myself again. My Instagram and blog focus on motherhood, self-care, and my journey through my recent diagnosis of cancer. Read More

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