If you have been following along with my story, I shared Part 1 last week. I talked about my diagnosis and my experience throughout that process.
If you haven't read it yet, I would start here at My Breast Cancer Story Part 1: The Diagnosis.
I also want to start by saying I truly appreciate each and every one of you who reads this. Thank you! Thank you! If this helps you, good! If this can help someone you know, please share it with them. Thank you friends!
Part 1 left off on October 15th, diagnosis day, and then I shared that I had met with my doctor and we had discussed a plan.
We met with my doctor and the plan was to start chemotherapy. We also planned to have scans periodically to see the progress and change the plan if the treatment stopped working.
I was scheduled to have an implanted port put in, to make the infusions easier.
"An implantable port is a catheter with a small reservoir (port) attached to it. It can be used to give chemotherapy or medicine into your vein, or to take blood. Implantable ports are sometimes called portacaths or subcutaneous ports.
The catheter is a thin, soft, flexible tube made of silicone. It is usually put in (tunnelled) under the skin of your chest or sometimes in your arm. One end of the tube goes into a large vein just above your heart. The other end connects to the port.
The port is a small disc that goes under the skin on your upper chest or arm. You will be able to see and feel a small bump on your skin where the port is."
Quoted from MacMillian Cancer Support
The port was rather uncomfortable and did protrude out from my chest. It hurt when bumped and I was very self conscious about it being seen. It was convenient at times, but overall I would not recommend it. Being stuck with a needle in your chest is an experience in itself. Imagine someone placing a thumbtack looking needle in your chest. Not enjoyable. I applied lidocaine to numb the area, but that didn't always help me. I had some nurses miss the port and end up hitting the sides. Let's just say, ouch. I did not enjoy the port. The two plus sides of having a port was that I was only stuck with a needle once and throughout the chemo infusion, I was hands free rather than having one arm immovable with an IV. I would say if you are getting chemo weekly for long periods of time, get the port.
After having my port put in, I was scheduled to have my first chemotherapy appointment. I started with labs, to check my blood counts, saw my doctor and then would have my first infusion. All of my treatment at this point was chemotherapy through infusion, which meant the medicine was administered in an IV bag.
I had prepared for this day for two weeks. Friends and family gifted me the "cancer essentials" to get through chemotherapy and I brought a bag that looked like I was staying for the weekend. Truly I didn't know what to expect at all. You can read and research what it might be like, but everyone’s experience is different.
(I do plan to create another post on the chemotherapy essentials and the products that helped me the most when sitting and receiving chemotherapy.)
Finally the day had come, infusion day. With no idea what to expect, my husband and I headed to the hospital on October 28th, 2021. I remember coming out of the elevator on the cancer floor and seeing older or elderly people. I felt looks. Yes, I'm young and yes I have cancer, I thought. And still to this day, I’m told all the time, “Gosh, you’re too young to have cancer.” First I went and had my labs drawn, then saw my doctor and lastly was called to my infusion room. I remember walking into the room and finding a comfy chair and a TV and thinking this maybe wouldn’t be too bad. My husband was there with me and I was thankful for the support. I started with a common breast cancer drug called Taxol. They said that they would give a Benadryl drip to start to counteract any reactions to the drug. I did not like the Benadryl. I started feeling light headed and felt like I was almost floating. Did not feel like I was in control at all. I hated this feeling and was thankful that it didn’t last long. Then once the Benadryl was done, I was given Taxol. We found a Hallmark movie on the TV and although it took almost 4-5 hours, the time seemed to go by relatively quickly. A smooth first appointment. We did not touch my bag of tricks that I had brought, besides the blanket I brought from home, my water, some snacks and my phone. I didn't use anything in that bag the first day. When we were done, they unhooked me and put some gauze over the port and I was sent home. Yay, first day down! I had done it. Treatment day 1 finished.
I remember getting home to the kids and my daughter was so worried. She was worried and wondered if I was okay. Mind you, both kids were used to stay at home mom Ally, not my mom is gone at treatment for 5 hours Ally. They didn't understand why I would need to leave like that and all we could do to explain was that mommy was getting the medicine she needed to feel better. Just as you would explain medicine and sleep helping someone who is sick. They understood, but it was definitely a big adjustment for them. Thankfully both my parents and in-laws are very present and truly helped so much watching and helping with the kids. My husband also took on a lot of the jobs that I usually did at home to help! Thank you hubby!
I got home that day and felt tired. They mentioned I would feel tired from the Benadryl and I did. I got home and took a nap for most of the afternoon. That first day went by like a blur and I was in such a weird state of mind. Imagine finding out you have cancer, starting a harsh treatment just 13 days later and still processing everything that is happening. Crying. Questioning. Crying. Feeling horrible that my kids were having a hard time. Crying. It was a cycle. I felt like everyone was trying to help, but no one knew how. Happy upbeat Ally, turned into a scared and mind racing Ally. My head raced from thing to thing. How long do I have with my kids and my husband? Would I be here to celebrate big events? What if I'm not here next year? Spiraling. The next day after my first day of treatment, I remember sitting in my bed and telling myself I need to read my devotional. I remember praying, "God, I need you. Help me. Help me to understand this." I opened up my bible and devotional and his words helped me. I remember putting on my headphones and listening to gospel music. For some reason it calmed me and sent me to a holy place. God was there and he was protecting me and keeping me safe. Listening to that music calmed me.
Over the next few days, my attitude changed. God gave me confidence and my mindset became positive and I knew that thinking in a positive way would help me tackle cancer. I prayed throughout every minute of the day. For extra patience with the kiddos, for the little moments, for anything I needed and for what was going through my head. God was present and here with me every moment of those days.
After my first appointment, I noticed a skin rash on my arm. It was on my wrist and was very itchy. It progressed and moved up my arm. I contacted my doctor and they mentioned that I must have had a reaction to the Taxol. At my next appointment, a week later (I was going every Thursday morning.), they administered a steroid through my IV that cleared up my skin within seconds. I have never seen something so incredible. I remember watching it disappear before my eyes. Wow. My doctor mentioned that they would be switching me to a different makeup of Taxol and hopefully that would help the rash. We planned to start that at my next appointment.
Meanwhile, my daughters birthday was coming up and I have always loved hosting parties. After just two appointments, we had her birthday party. A party both Saturday with one family and Sunday with the other. This was a big weekend for me. I wanted to celebrate my daughter and wanted her to feel extra special, as she should, but I also remember feeling overwhelmed and worried that I was pushing it too much. We have video of my daughter and I standing by her cake and singing happy birthday to her. Watching it back today, I still feel all of the emotions. I remember singing to my beautiful girl and watching her eyes light up. I remember thinking, what if I won't get to be here with her next year, then giving her a hug and wanting to cherish every moment. Memorizing every nose twitch when she smiles. Every little thing. Then I remember thinking. I will be. God has got this. The weekend was amazing and our families made it such a special weekend. I can still remember every detail. The moments you live for. At this point, by looking at me, there was no way you could tell that I was going through treatment or had cancer. I had all my hair and besides feeling tired, I was doing okay.
Treatment number 3 came the next week and I was anxious to have another treatment with a new drug that we hadn't tried yet. We did labs as normal and then went right to infusion. I told my nurse that I had been an easy patient, or so my nurses had said, and she was excited to have an upbeat and positive patient. They started the infusion and I started to feel like my heart was racing. I tried some deep breaths to slow it down, but couldn't. Then I remember my lips tingling and started feeling very hot. I let the nurse know and she quickly set off an alarm. In less than 1 minute I had about 15 nurses and two doctors in my room. They shut off the drug immediately and quickly gave me something to stop the reaction. Instant relief. What a scary moment. I had a major allergic reaction to the drug. I didn't get to have treatment that day and they sent me home early. We would try a different drug again next week.
I went home this day feeling down. I felt like even though the cancer treatments weren't fun, at least they should be killing cancer. Not getting treatment wasn't doing anything for me. I was staying in the same Stage 4 cancer spot and without treatment it wasn't getting any better. I prayed for God to give the doctors a drug that would work. One that would give me amazing results. I needed treatment.
We saw my doctor the next week and he reassured my husband and I that he had another treatment in mind. It was the same drug Taxol, just had been created with a different makeup or had different ingredients. He thought that the castor oil, that is used when creating the infusion drug, was what I reacted to. This new form of Taxol had a different ingredient, but should give the result we wanted. Abraxane.
During this appointment, he also asked us if we were Christians. We said yes and that we had a big community praying for me. He let us know that he sees lots of patients and has seen lots of miracles. He recommended a book to us called, "Christ, the Healer". He told us it was a good read and would be worth buying. We purchased the book and I started reading it throughout the following weeks.
They next appointment went amazing. My counts were great and my infusion, with the new drug, went without a hitch. God is good and helped us find another drug that would work and do its job. We continued to pray that this drug would give us results. I continued to use Abraxane, the chemo infusion that worked, for the foreseeable future.
After the fourth week, I started losing my hair in clumps. I was sitting on the couch and the entire back of my sweatshirt collar was covered in hair. It was very itchy. When I would comb it, very carefully with a pick, I would cry. Huge clumps of hair. At this point I came to the conclusion that it was time to cut it. I researched and found that if I shaved it at a level 2, then it could fall out slowly and wouldn't hurt my scalp. I had my husband take his clippers and we shaved my entire head in the kitchen. Many tears were shed and no one can prepare you, as a woman, to lose all of your hair. Thankfully at this point, my eyelashes and eyebrows were still intact and because it was winter in Minnesota, I started wearing beanie hats everywhere I went. It worked. According to my fam, I rocked it. I called it convenient, but still got sad when I looked in the mirror. I was grateful that I still had my makeup to help me still feel girly.
Besides losing my hair, on abraxane, I didn't have any symptoms. My life seemed like nothing had changed besides treatment and I was able to continue being a stay at home mom with both kiddos. My energy was up and I was doing all the things. A blessing.
Another thing that I did, while at my cancer treatments once a month, was a Zoladex shot and a Zometa infusion. The Zoladex shot is a shot to put me into menopause and basically stop my body from producing any form of estrogen. This came with menopause symptoms and I was told that I would not be able to have kids again. I had wanted more kids and had prayed for God to give me an answer the entire year prior. Sometimes God answers prayers in ways you would never imagine. God said, no and that's okay. My answer to that prayer. Would I have maybe wanted it another way, sure. But, God’s plan for me was have a sweet girl and boy. Maybe his plan is for me to reach kids teaching someday? Or be the best auntie around? All I know is that I hope in someway I can be a light to kids, even if it’s just my own.
I also had a Zometa infusion every month. A bone infusion to strengthen my bones. When I was diagnosed with stage 4, the bones in my back were hollow. Zomeda strengthens those spots and creates new bone. A short 30 minute infusion.
Going back to Zoladex, the shot I took every month. I remember the first time I got the shot. I was told, "Yep today you get the Zoladex shot. Did you apply the lidocaine?" I was terrified. No? Was I supposed to? The nurse said she could give me ice to numb the area because it was quite a big needle. I was nervous. I knew it was going to really hurt and I prayed and prayed that God would help me do it. The nurse came in and it was the quickest needle I've ever had. It hurt just a little, but was done quickly. Thank the Lord. I found out after getting the shot, that this shot is the biggest gauge needle possible. And they have to have it so big that a small pellet can be inserted into your abdomen. How fun. Each month this process hasn't gotten much better and I've actually had nurses administer the shot that have never done it before. Ouch. I dread these monthly shots.
After 7 treatments, we had our first scan after starting chemo. After learning that MyChart sends results directly, we decided to not look at them on MyChart ever again. We would always wait until our appointment to find out the results and then the doctor could explain it to us. Thankfully this time, we had an appointment the same afternoon as the scan and didn't have to wait long.
Our doctor was amazed and mentioned that the scans were incredible. I was responding VERY well to treatment and everything was shrinking. He asked if we believed in miracles and my husband and I both looked at each other and cried. We were so worried about the results and the doctor telling us was the best news we could have received. The medicine was working!! Prayers were being answered! My doctor mentioned that we would stick to the same treatment for now and then go from there.
When talking to family, we decided that we also wanted to get a second opinion at Mayo Clinic. We are blessed to have the best hospital in the world in our state of Minnesota. We thought what could it hurt and that getting an opinion from some of the best doctors in the world could only help. The thought was they would either say, "Yes, keep doing what you're doing." or would be able to give another option that would only work better.
We scheduled an appointment for January 6th, 2022 and made the drive to Rochester the evening before. If you have ever been to Mayo Clinic, in Rochester, you can agree when I say, wow! I have never seen such an incredible campus full of so many doctors and nurses. It even looks like the best of the best.
We met with our doctor and he shared with us that he wanted to switch gears and would have me start a pill-form therapy of treating my cancer rather then infusion chemotherapy. An anti-estrogen therapy that would target the estrogen and stop the production of it. (Estrogen is what was fueling my cancer.) I started on a pill called Kisqali that I would take every day for three weeks and then take one week off. I also started a pill called Letrozole that I took daily. He mentioned that there was a chance that I would grow back all of my hair and because it was a pill and that I could stay home and take my medicine from home. He also said that these Kisqali can be used for years and that they are some women on this study have used for 7 years without needing to switch, because they have had clear scans. He also mentioned that there are 5 other types of this pill to switch to. If one stopped working, we would switch the next one in line.
My husband and I looked at each other and I could tell in his eyes that we were both relieved. Excited for a plan that wasn't only working for now, but could be planned on for years. We were looking at years, rather than months. YEARS with my family and friends!! We left Mayo Clinic excited and ready to start a new treatment. Our doctor at Mayo shared his change of treatment with the doctor we had been working with in town and he implemented the plan for us.
I got the new pill form and we started the new treatment. I felt good and felt like nothing had changed. My life seemed to go back to normal and I was still a doing everything like I did on Abraxane. We scheduled my next Mayo appointment for April 8th. We were still doing the monthly Zoladex shot and Zometa infusion in town as well. These being the only times I would have to go to the doctor.
My doctor at Mayo also mentioned, that if I was okay with it, I could have my port removed. He said I would only be getting the Zomeda infusion once a month and it wasn't necessarily needed if I was okay with a needle infusion in my arm. I jumped on this and quickly scheduled for my port to be removed! Yay, no more horrible port needles!
After I changed from chemotherapy to Kisqali, I slowly lost my eyelashes and eyebrows. I was surprised that they had held on throughout chemo, but I'm so glad they did. I think they must have been holding on for dear life throughout chemo. This was probably the hardest part about the entire process. Some might say, "It's just your eyelashes and eyebrows." But, it was a big deal. If you know me at all, I've been blessed to have long eyelashes since I can remember. God knew I needed them throughout chemo. Even though my head was shaved, I was able to wear hats and still do my makeup and mascara. I still felt girly. When I lost my eyelashes, I felt down. I didn't feel "pretty" and I struggled with my confidence. No one can prepare you for losing things like this. It was horrible. I started taking a hair, skin and nail vitamin, which was approved by my doctor. Which helped not only my hair grow back, but I also noticed it helping my eyelashes to grow back too. Thankfully, they are full and back now, but I will never take for granted doing my mascara again. If you know someone going through losing their hair, eyebrows and eyelashes, please do anything to brighten their day!
Meanwhile, I had finished my "Christ the Healer" book and had prayed and believed that God had healed me. I felt confident knowing that Christ could do anything and I just felt like I was healed.
Something that stuck with me throughout this time was something I read in a book called Seeing Beautiful Again. When creating a cake if you were to pick the ingredients by taste, you would probably eliminate the flour and raw eggs, because they don't taste good. Without those ingredients, you cake wouldn't be good and wouldn't turn out as a cake. Just as your story. If I were to write my story and not include the bad thing, it wouldn't be God's story for me. If it were up to me, I definitely wouldn't have chose cancer to be apart of mine, but in God's story for me it does. And without that piece it wouldn't be complete. I was meant to have cancer for a bigger reason than even I know. God will somehow use this for good. God will be my "possible" in the midst of what can sometimes feel so impossible.
The last part of my story, the MIRACLE is next. What happened at the April 8th appointment? A miracle. I will dive into our scans and what happened at Mayo Clinic in my next post.
For those of you who made it this far, thank you! This was long! If you have any comments or questions about my journey, I'd love for you to share below! If not, thanks for following along with my journey so far!
Xoxo,
Ally