4.5.23

First of all I want to say: This is my first official week without chemo in 5 months!!! However, that doesn’t mean I still didn’t need to make a trip to the cancer center… 🙃

At the beginning we were overwhelmed with everything going on. How can I seriously have cancer when all the statistics would suggest otherwise… We decided to trust God. We prayed for wisdom in our decision making and for our doctors. We decided to trust that the doctors God placed in our path were the ones He had for us. We have not had to “fight” for one thing. When I went in for the lump my doctor automatically ordered the mammogram. I have heard of women that did not meet the normal criteria for breast cancer so they were told it can’t be or don’t worry about it. I had a second doctor appointment scheduled at a different hospital just incase Marshfield wouldn’t do the mammogram or biopsy. I didn’t even have to request the biopsy. When I went in for the mammogram the doctor told me the only way to know for sure was a biopsy and left it up to me. Then when he called to tell me it was cancer he told me that if I was his wife he’d push for an MRI. When we had our first consult with the oncologist he said right away, we want to do an MRI. When we were at the second appt for that day (with the surgeon) they came in to tell us the MRI was schedule, roughly two weeks from that day. Our surgeon was like: “That’s not good enough call so and so and see what they can do.” The nurse came back in ten minutes later and said she had me scheduled for the next day. When I found out I would have to have chemo I was worried they would want to try something that was newer and didn’t have the research behind it. As crazy as it sounds I would rather do chemo that has been around for years and years than to try something that we wouldn’t know what possible side effects could happen in 10 years… My doctor automatically went with chemo and I didn’t even have to voice my concerns about it. If you are like us, you see God’s hand in it all. Obviously not what we wanted, but He’s had us in the palm of His hand this entire journey!

On Wednesday I had another appointment with Plastics, per the recommendation of the plastic surgery doctor in Madison. He suggested to add more saline to the expander if I was going to do radiation. Long story short, radiation has a tendency to tighten your skin, by adding more fluid it can counter that side effect so that when I’m done and ready for reconstruction surgery my skin will be the right size. (Hopefully that makes sense!) One positive and I’ll call it a huge answer to prayer. When she poked me to fill the expander, I felt it!! 😀 The last time they added saline was at my 6 week follow up after surgery to get the expander to the amount they took out. She told me then they don’t worry about numbing you because typically women are still numb at that time. I was. I did not feel her poke me. But Wednesday when she poked me I was like “Hey, I felt that!” I know, a silly thing, but I was excited. And remember I like to celebrate the little things too. 😉🙂 It means my nerves are healing!

Once in awhile I will have a day where I am just mentally spent. As in, I want to be done with all of this. I want to feel like ‘myself’ again. I know it will be a life long journey of accepting my new normal. I hate that term, but that’s what it is. I hope that once I am able to have reconstruction surgery and get rid of this stupid expander I will feel like I can finally move on. Do any of you remember what the water babies from the 90’s were like? You picked them up ands they were heavy. That is what the expander feels like, only it’s sutured to my chest wall. 😬 And it sloshes when I move. 🙄 Although, that part has gotten a little better since adding more fluid. 🤪 Now it just feels like when your milk first comes in after having a baby. 🤪😬🤣 And it’s about as comfortable as that too. Eventually you get used to the feeling though. 😬

This diagnosis has been such an eye opener for me. I thought it was going to be a “simple” surgery to remove cancer and life would go on. I did not realize how drawn out everything could be. I know there are cases where the cancer is removed and life goes. But even then, life doesn’t just go on, it isn’t the same. We are 8 months into this journey with a possible 6-12 months to go before I can be completely done, surgeries and all. Even then life won’t be “normal” I am considered high risk and it is recommended that I have either a mammogram or MRI every 6 months. I think for a majority of women diagnosed with breast cancer you are looking at a year before reconstruction with chemo and radiation in between your surgery and finally being done with it all! That means this could potentially tie up 3 separate calendar years for me. Diagnosis, surgeries, and start of chemo in 2022, finish chemo, possibly radiation in 2023 and if I’m lucky my first reconstruction surgery in 2023 with the second one to follow 3-6 months later. Depending on the doctors availability and what we decide with radiation it’s possible that reconstruction won’t even be able to be scheduled until 2024. 😳

On to my consult from Tuesday

We met with my oncologist first. We talked over what my next steps would be. My cancer is ER+ which means that it is driven by the estrogen in my body. Once we make a final decision about radiation then we will start my hormone therapy. Basically I’ll get a shot every month to shut down my ovaries and then take a hormone pill to keep my estrogen levels down. I’ll have to do this for 5-10 years. If we choose to do radiation this will start after that. If we choose not to do radiation then we’ll start this right away.

My next appointment was with the radiation oncologist. We talked over some numbers and about my concerns. I have about a 15% chance of cancer coming back locally. By doing radiation I can knock that down to about 5%. He mentioned in the women that have radiation only about 2% have an actual “survival” benefit. Meaning by doing radiation it added years to their life.

He did not recommend radiation for me.

He said the risks didn’t outweigh the benefits in my case. We talked about the dermal invasion. He did say his gut instinct was to do radiation but he had consulted other radiation oncologists that specialize in breast cancer patients and according to them that is not reason alone to necessarily recommend radiation. He also mentioned if we wanted to get a third opinion we could set up a zoom consult with Madison. He couldn’t say enough good about them there and their knowledge. I’d been praying that God would give the doctors the wisdom/discernment to know what’s best for me. It’s funny, I got the answer I wanted. I went to the car and cried a few happy tears. And now I sit here wondering if this is too good to be true. Did he just not recommend it because I’m concerned about the cosmetic side effects. Our oncologist told us that if the cancer does come back they consider it incurable. They would look at ways to manage the disease versus curing it. The nice thing is we don’t have to make a decision right away. He said the soonest he would start radiation is three weeks after my last chemo and the latest they would start it is four months. I think we’ll go ahead and get a third opinion before we make the final decision. The first radiation oncologist started our appt with no you don’t need it and then switched (because of the dermal invasion), the second radiation oncologist said no you don’t need it (and he admitted he thought about recommending it because of the dermal invasion) getting a third opinion is kind of like getting the tie breaker. Aaron didn’t like hearing the term incurable. And I guess I don’t either. So you can continue to pray for wisdom, discernment, and a peace with whatever decision is made.

The white tab is the bottom. The black disc you see in the middle is the port in which they fill the expander. There is a special tool that goes over the port and marks the center to let her know where to poke in order to fill it. It usually leaves a little blue bullseye mark on me for a day or two. 😬

Meet Dr. Naqvi, my oncologist. We’ve been very blessed to have him as part of my treatment plan! He has been great to explain what is going on and at our consult on Tuesday he said something along the lines of: It’s our job to give you all the facts so that you can make an educated decision for yourself. You need to listen to your gut. I cannot tell you how nice it is to have a doctor that works with you. We never felt like we had a stupid question or pressured to make a certain decision.