Chemo & Capping Day 1 down!
Chemo Day 1 Done!
First round went well
I am really happy to say that Chemo day 1 is done - 15 more to go until this part of my adventure is over. Tim has been such a wonderful wingman through all of this and I can't imagine going through this without him. My chemo days are pretty long, at the center from 9 am - 4 pm, because of capping and the two meds I am on. But the infusion center is really comfortable, my nurse is wonderful, and they are allowing Tim to be back in the infusion area with me to help with cold capping. We have to cold cap for 4 hours after the last infusion of medicine that i receive, so this past week cold capping was done by 6 pm and I was ready for bed shortly there after.
Some of you have asked how I felt during the chemo infusion. The best way I can explain how I felt during the treatment was that I felt normal! The needle insertion into the port was intimidating - I don't like needles or things inside of me. So having a port on my chest to administer medicines through has been a test of my comfort zone. During the treatment I had good energy, was able to do things, and with the capping the day moved along fast.
I slept most of the day on Friday and my body felt pretty exhausted, but day by day my energy is coming back. By yesterday (Sunday) I had good energy in the morning and was able to be more mobile around the house. But taking a walk further than the mailboxes at the end of our street feels like the furthest I could venture - that walk whooped me.
Beyond being exhausted I have managed to avoid some of the bad effects of chemo this round. I felt nauseous the evening of the infusion. But I have some great meds that seem to be keeping that at bay. I have an appetite, but am not eating as big of portions as I might usually eat. My chemo symptoms will continue to compound with each treatment, so I anticipate that I'll feel pretty tired as the months tick by.
I have to be more fastidious about washing hands, staying away from people who are sick, and making sure I am staying a safe distance away from others. So COVID protocols are still strong in our house. My immune system is going to take a big hit, so we're trying to keep our habits strong as I go down the chemo path.
Why am I having chemo?
A few of you have asked why I need chemo if they got the tumor out with good margins and clear lymph nodes. So I figured I'd write about that in this post! There are many kinds of treatments often used to treat breast cancer: surgery, radiation, hormonal, and chemo therapy.
- Surgery addresses the tumor itself and the locations where it has traveled that the surgical team can detect.
- Radiation therapy treats the region where the tumor was to ensure that any smaller cancer cells left over in the area close to the tumor are zapped and told to behave. Because I have chosen to have a double mastectomy, I don't have to have radiation. However, if I had decided to have a lumpectomy to just remove the tumor I would have had to have radiation therapy.
- Chemotherapy is a systemic treatment, so it treats for any rogue cancer cells that my tumor has sent throughout my entire body. The decision by my care team to recommend chemo was based on my oncotype (tumor's genetic make up). My tumor was a small one, but it was grade three (high malignancy) and aggressive. Even though no cancer cells were found in my sentinel lymph nodes that were taken out, it doesn't mean that cancer cells were not sent to lymph nodes that were not taken out. I am thinking of it like an insurance policy. I might not need to use this insurance policy (as in there may not be any rogue cells in my body), but by taking it I reduce my chance of my cancer returning in a significant way.
- Hormonal therapy is another systemic therapy (as far as I understand it) that I will be put on after my chemo is complete. This is used to suppress my hormone levels (estrogen and progesterone) so that any rogue cells that made it past chemo and the surgery are not fueled back into a growth process. This kind of therapy is something that I could be on for years to come.
Living on Cancer Island
I live on cancer island all the time right now. It's basically my life with phone calls from doctors, convos with Tim about managing schedules, going to appointments, processing new information and treatment options, and looking into research about managing my BRCA1 mutation. I could live on Cancer Island all day long if I let myself, but it gets pretty dark and depressing. So instead I actively choose to do things to take my mind away from this part of my life to gain some control and get a break from a dark place.
For me, Cancer Island is a mixed Pandora's Box of emotions (joy, understanding, fear, and confusion among others), treatment options I am weighing, physical feelings (tiredness and discomfort from surgery). Because of this, there are times when I don't feel like talking about my health, how my treatments are going, or my feelings about my cancer diagnosis. I even have to tell Tim that I don't want to visit Cancer Island at times! It is important for me to protect my heart and avoid opening a box of emotions or unknowns during conversations. Without these boundaries conversations can turn into me rehashing my situation over and over again with lots of different people. It becomes emotionally exhausting and can make me feel sadder than I was when our conversation began.
It doesn't mean that I won't ever want to talk about my life on Cancer Island or my feelings right now. But it does mean that I am relying on friends and family to help me take a break from Cancer Island. Feel empowered to ask how I am doing and how I am feeling. Just understand that sometimes I am not going to feel like talking about myself. The most fulfilling conversations for me at the moment are about how you are doing. Let's talk about "normal life" and anything that we would talk about on a regular basis. Cancer can take away a sense of normalcy and control from me if I let it. But it doesn't have to! Hearing about normal things from you reminds me that life goes on and this will just be a chapter in my life that I can look back upon once it's over with. That's a silver lining from my past experiences with cancer, I know that this is just a moment - it's not forever.
A "thank you" is in order!
Thank you for sending me care packages, pick-me-up notes, texts, and phone calls. They truly brighten my day! I am trying to figure out who sent me a LOVELY set of teas and I cannot figure out who they are from. If you sent them my way send me a text so I can say thank you! They are delicious and have made for some great afternoon treats to round out my hydration routine. During chemo I am guessing that there will be days when I don't have a lot of energy. Please know that I am thinking of you and feel your love, I just might not have the pizzaz to connect right at that time.
Sending you my best from the Alamo City!
-Nicole
