“For last year’s words belong to last year’s language, and next year’s words await another voice. And to make an end is to make a beginning.” – T.S. Eliot
I can’t believe it has been over three months since I’ve written here last. Active treatment is over. I took my last dose of Xeloda a week ago.
January 2025 June 2025January 2026
It’s funny… the way people treat me is very much determined by the way I look, but cancer is tricky that way. The most support I got was during and after my double mastectomy (thank you!) but that was honestly the easiest part of this treatment journey. The first six months of chemo were harder – pain, nausea, fatigue and hair loss. But the hair loss was an outward manifestation of what I was going through, which made it easier for people to relate.
This last six months of chemo were much harder for me. Yes, my hair started growing back. Everyone I talked to told me how much better I looked. But the pain, nausea and fatigue were still there. What made this round so much harder was the addition of hand and foot syndrome, a side effect of the Xeloda. My feet were the worst. When they were just red, it felt like a sunburn under the skin but when they turned purple? It was like my feet were dipped in acid. My skin cracked, causing deep sores that wouldn’t go away. There were a lot of days during the last six months that I couldn’t even walk. My fingerprints disappeared and my fingertips were tight and swollen. Touching anything was painful. Several of my toenails turned black and fell off. Not only was I physically in pain, but mentally it was difficult not being able to do anything. I ended up gaining over 20 pounds, which also made me feel worse.
at podiatrist for neuropathysplit thumbsore on toehands healing from cracksskin peelinghand starting to get crackscracking before skin came offmore skin splitsskin starting to come off
The thing is… the hand and foot syndrome doesn’t look that bad. And I know it could have been worse, but the pain was just too much on top of the abdominal pain and bone pain and joint pain and headaches. The last six months I have had to focus on making it through one day at a time. I think I cried more in the last six months than I have in my entire life put together.
And then, last Wednesday, I was done.
I know I should be happy that treatment is over, but my body and mind are still in survival mode. I feel lost. There is nothing I can do now but wait to see if it comes back. I see other cancer patients celebrating and getting their ports removed. My oncologist wants to leave mine in because of the high chance of recurrence. Every three months I will go get the port flushed, get bloodwork and have a physical exam. If anything hurts more than a week, call to get seen so she can do a scan. TNBC often comes back in other places – lungs, liver, brain or bones. So, the fear is there all the time. Is this a normal headache or the cancer? Is my arthritis acting up or did the cancer come back?
I felt really good Tuesday and got so much accomplished around the house. But Wednesday I couldn’t get out of bed. I’m not sure what to expect or how to adjust to this new normal. What can I realistically accomplish? How do I cope with the fear and worry? It’s a lot.
A year ago, I posted about the balloon rally and all the memories it brought up. This year, I got up and went by myself to look at the balloons. It was a huge win for me as I haven’t been able to walk very well (thanks, Xeloda). Parking, walking to the field, taking pictures and walking back to the car… Little things, but things I haven’t been able to do in a really long time. I felt hopeful and that was amazing.
As promised, I’ve been thinking about ways to create joy in my life. I want to focus not just on passive things that make me happy, but also habits and actions that I know will bring me closer to my best life.
Organization
200620072013
I used to get up every morning and make lists for the day. Nothing makes me happier than a good journal/calendar. After I got cancer, one of the worst side effects (for me) has been chemo brain. It is next to impossible to remember things or focus on anything for more than two minutes. I am having trouble with comprehension, recall and just general problem solving. I haven’t been making lists because it is hard for me to write them and even harder to follow through. I want to rectify that and this post is a step in the right direction.
Short Term Goal
Post on the blog more often. Try using Post-It notes for lists so that I can add single items when I think of them instead of staring at a blank piece of paper.
Long Term Goal
Find a planner that I really like before the new year. Get it set up and write in it every day. Make it part of my morning routine so that I can start training my brain to work again. So far, I really like this one but am open to suggestions.
Looking Up
I love the sky. It is every changing, but always beautiful. There are no expectations, just acceptance of what is. My house is located in the city, and we don’t have much of a view. It is frustrating to see only a small patch of sky. I can feel myself getting more and more depressed. I need to look outside of myself and remember the beauty that is all around.
Short Term Goal
Walk outside. Look up. Every day. I take my medicine every morning and every night, so I am going to try and watch the sunrise and sunset from my porch.
Long Term Goal
Get in the car and go. Go chase that storm. Watch the sunset from a hill outside of town. Take an early morning drive and watch the sun rise over the lake. Stop making excuses.
Travel
I love a good road trip. My favorites are national/state parks and kooky tourist attractions. There is something about travel that makes you grateful for home. The beauty of nature and the creativity of humans are two things that always inspire me. Right now, travel is hard. I don’t feel well and need to stay close to my doctors. We have a primitive cabin on some land a couple of hours away, but I haven’t been there since my diagnosis. The thing I’m most worried about is the lack of running water and a bathroom. I need to find a way to balance my health with activities that I enjoy.
Short Term Goal
Since walking is hard for me right now, I am going to try going for drives with my husband. There is a lot of beautiful scenery around Las Cruces and no reason not to see it.
Long Term Goal
I will be done with chemo the first week of January. I will need a month or two to recover and start feeling better. My husband’s birthday is in March so I want to plan a road trip for the two of us.
Bathroom still not done, still tired, still taking mirror pics.Four pills in the morning, four pills at night.
Almost halfway through. I start my 4th cycle on Wednesday – Keytruda and Xeloda. I’m starting to feel really down. The days feel endless. Everything is hard. My hands hurt. My feet hurt. I’ve been using the wheelchair when it gets too hard to walk, but I hate feeling like an invalid. I hate asking for help. Sometimes I question my life. Am I really in constant pain or is it in my head? Am I really tired or just lazy? Is it worth it? Logically, I know that it is. I want to give myself grace, but I also want to scream.
I know that finishing treatment won’t be the end, but it is what I’m looking forward to right now. In January, I will be done with active treatment. How long will it take to feel like myself again? Many months, I’m sure. Maybe a year or more. Maybe never.
I need to lift myself out of this funk and find something constructive to do with myself. I need a plan, a goal. Wednesday is my birthday. It is also the day I start back on chemo and immunotherapy. My day will be spent at the oncologist’s office and getting infusions. But I want that day to be a new start for me. The beginning of another year should hold hope and bring some joy. So, I’m going to give myself the next two days to feel sad, and then it is on to the business of creating the life that I want.
I am going to make a list of things that make me happy. Using that, I’m going to make two plans – one short term and one long term. In order to hold myself accountable, I will post them here. I need something concrete to focus on in order to move forward. If you have any advice or ideas on how to avoid spiraling, please let me know!!
In other news, they built a Starbucks a few blocks from my house and I have to pass it on my way to the doctor’s office. I’m thinking a post-infusion treat is in order!!!
I’ve had several people ask me for the link to donate, so find the info posted below. Please note that any money donated to the GoFundMe goes directly to medical bills. Cash App or Venmo donations go to living expenses (bills, food, etc.).
I was feeling sorry for myself this morning. I hate feeling sick and tired all the time. I’m over the constant pain and feeling alone even in a room full of people. “I’m not built for this,” I thought. “It’s too much.” But then I remembered that NO ONE is built for this. There is nothing natural or normal about chemo. This isn’t easy, but that’s ok. I’ll get through this the same way I’ve gotten through every hard time in my life. One day at a time, one hour at a time. It is important for me to document this feeling. Years from now, I want this to pop up in my memories and remind me of how far I’ve come. Future me: don’t take anything for granted!!
So, two cycles down. I was really hoping that this chemo would be easier for me. Maybe I am just weak? Why do I get every possible side effect from everything I do? *sob* So frustrating. The second cycle really hit me hard. The fatigue is out of this world. But the Hand Foot Syndrome? It is beyond frustrating. My feet start turning red and are tingling non-stop. After the first few days, they start burning. It feels like a sunburn from the inside. This time, I started getting some blisters around my toes.
It became hard to walk. I spent almost a week in either bed or the recliner. Nausea was worse. Now taking meds every day to control it. GI issues worse. Taking meds every day to control it, but still an issue.
Today was the first day it didn’t hurt to walk. I almost feel good.
I went to the oncologist’s office for my labs. On the way there, I started crying and sat outside for a good five minutes trying to get myself together. I couldn’t stop thinking that tomorrow I will get another infusion of Keytruda and start the chemo pills again. I know I’m going to start feeling bad again. It is overwhelming, and I don’t want to be doing this. As soon as the nurse started the blood draw I started crying again. So embarrassing. Sometimes I hate being me.
I should be done with all of this in January. The busy months are coming up, so I have my birthday to look forward to. Halloween. Thanksgiving. Birthdays. Christmas. It should help to have these little goals.
I really need to get out of this funk. If I can’t control it, I need to let it go. Breathe.
I want to be happy. I want to be positive. I want to be a good example of how to face obstacles with grace.
But…
Everything is so hard. It hurts. I am tired. The reality of cancer is that the things you have to do to fight it also destroy you. I can’t remember the last time I wasn’t tired or the last day that I didn’t cry. People tell me to think about the future, about life after treatment when things will be easier. Hope is important. But, for me, it is not enough to hope for things to get better. Because what if they don’t? What if the cancer spreads and chemotherapy never ends? What if I die waiting for things to get better?
For me, it helps to put things in perspective. Something is bad. Okay, imagine if it was worse. How would I deal with that? How would I manage? Now there is a space for me to be grateful.
Today I am challenging myself to find the positives in the negatives, to flip the script in my brain.
Last night I couldn’t sleep because everything hurt. My hands and feet were tingling. I had severe abdominal pain. My legs were cramping, and I couldn’t get comfortable. I got up and took a long hot bath, remembering that less than two months ago I had surgery and was unable to take a bath. Back then, all I wanted was the ability to soak in some hot water. And now I can. Any time I want I can fill the tub and relax. There are so many people around the world that don’t have that luxury.
Gratitude.
My fingernails keep breaking down to the quick, but they aren’t turning black and falling off.
My face is covered with peach fuzz, but that means my hair is growing.
I feel nauseous, but I’m not throwing up.
I have to do more chemo, but I’m already done with one cycle.
I’m always worried about money, but I have a roof over my head.
Everything is hard, but I’m not doing it alone.
I’ve been in active treatment now for eight months. Of course I am going to get tired of it. But this isn’t a sprint. It’s a marathon. Today, I need to take a breath and readjust my attitude. Tomorrow, I go in for another infusion of Keytruda and start my chemo pills again.
The last time I wrote (3 weeks ago), I was so happy and hopeful. After meeting with the oncologist, she told me that I would have to do another six months of chemo in addition to the immunotherapy. Since I only had a partial response, it is the standard of care. I was a bit deflated, but still feeling strong. A couple of days later, I had to go to the emergency room. The skin around my incision was swollen, red and hot to the touch: cellulitis. I was given IV antibiotics followed by ten days of pills every six hours. A week after finishing, the symptoms returned and they started me on another antibiotic. I finished it and it seems to have worked.
Mentally, I’m doing ok. Physically, I’m doing ok. I’m just so tired. The last couple of days have been a struggle.
July 29, 2025
Before I was diagnosed with cancer, I was a painting contractor. We started the bathroom remodel right before I had my first chemo. Seven months later it still isn’t done. When I look at this picture, I see all the things I can’t do. Patching the wall, sanding the door and painting everything should take a day at the most. I see it. But I can’t make myself do it. All I want to do is sleep – curl up on the bed and hug a pillow. I want to hold as still as possible until it passes… But how long can a life be put on hold? I’m struggling right now to reconcile what I want to do with what I need to do with what I’m actually capable of doing. I don’t like this version of myself.
Mirror Me from my (still) under construction bathroom!
When I started this journey, my oncologist told me to expect a year of treatment: chemo + immunotherapy, surgery and then more immunotherapy. It seemed impossible at the time to even imagine getting through so much. But here I am. Chemo + immunotherapy DONE! Surgery DONE! I’ve already started the immunotherapy, so it feels like I can see the light at the end of the tunnel.
I’m tired, yes. Scared of recurrence, yes. But more than anything I am grateful for this life and the people I get to share it with. There is so much that I took for granted before. I won’t make that mistake again.
Today is a big day. I’m meeting with my oncologist to review pathology results and finalize our plan moving forward. Best case scenario I will finish the immunotherapy and be done with active treatment. But I know that there is a chance I will have to do more chemo. While that scares the hell out of me, I know that whatever happens I can handle it.
It’s been six months since my first chemotherapy treatment, seven months since my diagnosis. I am feeling so good right now. The immunotherapy side effects are there, but manageable. My surgery went smoothly and I am recovering well. I won’t get biopsy results for two weeks, so I am here enjoying the good stuff. The reality is that this may be a temporary reprieve. If I need more chemo it will be back to square one. But I don’t want to think about that right now.
I need a moment to enjoy my life, to bask in the absence of everything that comes along with chemo. To breathe.
Last year vs. this year. Lost 50 pounds, my hair, my breasts but gained so much appreciation for life. I can honestly say I’m happier now because with gratitude comes peace.
There has been so much physically I couldn’t control that I was forced to let go of worry and expectations. I found that other areas of my life benefited from this attitude shift as well. I was able to let go of a lot of hurt feelings and sadness and forgive myself (and others). Instead of dwelling on the past I am looking toward the future and finding joy every day.
Now that I’m past the actual surgery, I want to document the crazy that happened around it. I was a ball of stress. Thank goodness my family was there to talk me through it and help me manage the nerves.
Tuesday: I went to my oncologist’s office to do labs. Nothing unusual as I’ve had them done dozens of times in the last six months. While I was there, the surgeon’s office called. They lost my preauthorization for the surgery. I spent an hour on the phone trying to get a copy so I could email it over to them.
Wednesday: Back at the oncologist’s office. She explained that we are waiting on pathology reports. If they find cancer in the tissue that is removed, then we are discussing more chemo. Every step of the way has come with caveats, so I asked her straight out about my prognosis. “Unfortunately, TNBC is very aggressive,” she said. “Even with your treatment and having this surgery, there is still a 50% chance it will return.” Not what I wanted to hear. After all the pain and tears of the last six months, I was hoping for more. 1 in 10. Even 1 in 5. But 1 in 2? My life just became a roulette wheel, and I started spinning.
Labs looked okay, but they were still waiting for cortisol results. Later that night, a doctor called me at home. My cortisol levels were dangerously low. I would need to take the emergency prescription they had given me the month before – a double dose Thursday and Friday before surgery and the hospital would administer it via IV. Ideally, they would like the levels to be better, but the team agreed that postponing surgery was not an option.
Thursday: I got a call in the morning that they had forgotten to schedule my scan to find and mark lymph nodes. In order to go ahead with the surgery Friday I would need to be at the hospital at 3 pm, fasting for 4 hours before. They would inject the radioactive dye into my breast and mark the sentinel node. I scrambled to rearrange my schedule and ate early so that I would be ready. As soon as I finished eating, the phone rang. The doctor doing the procedure was leaving early. I needed to be at the hospital by 1 pm instead. The girl who called was laughing and talking to someone else in the background and I started to spiral. It seemed so disorganized and unprofessional. I told her I just ate, but she said it was fine. It had to be done that day.
When I got to the hospital and checked in, they sent me to radiology. The woman at that desk was very rude and refused to take my paperwork because I didn’t have printed lab orders. I explained that the hospital had called, so I didn’t have any paperwork. She sent me back to registration. Five minutes of phone calls and the girl there finally figured it out. She was holding my order in her hand but told me to go back without it. I asked to take it “just in case” but she said no and shredded it. As soon as I got back to radiology it was the same story – no paperwork, no check in. Lucky, I saw the tech that did my last nuclear dye procedure in the back. He was telling them he had an emergency patient coming in, so I was able to flag him down. Again, the disorganization and lack of communication on the hospital’s part was making me very nervous.
EDIT: When I got home, our air conditioning was off. They ended up replacing parts to fix it while I was in the hospital.
Friday: When I got up to get ready for the hospital (shower – no lotion, deodorant, makeup, cream or powder of any kind) we didn’t have hot water. The cold shower made me super grumpy. They ended up having to replace my hot water heater while I was in the hospital.
6am check in for 8 am surgery. The surgical team was fantastic. I had a list of questions for my surgeon, but she addressed them all before I even had a chance to bring them up. Her confidence made me feel more confident. My husband and one of my daughters stayed with me until I was ready to go back. My nurse said that the surgery would only be four hours – less than we were expecting. The plan was for them to go home, and the nurses would call when I got out of the operating room. My time in the recovery room would give them a chance to drive back and we would meet in the hospital room where I would stay overnight.
All I remember from recovery is the nurse telling me how sorry they were, but they couldn’t get ahold of my family. No one was answering. I felt so alone and started imagining the worst. What could have possibly happened in the last few hours that was so bad no one was there for me? As they wheeled me to the regular hospital room, I saw Mike and my daughter waiting and a huge wave of relief rolled over me. It was the BEST feeling, just knowing that they were ok. It turns out the staff had been calling MY phone (on Do Not Disturb in my bag) instead of HIS phone. The surgery had lasted a little over seven hours. Since they hadn’t heard anything, they came back just in case. Thank goodness.
I had a lot of visitors that night and got pretty tired so went to sleep early. The night nurses were great. I did take some pain meds about 11:30 pm, but other than that the night was uneventful.
Saturday: I could feel a lot of pressure and a little pain returning in the morning. A nursing assistant came in at 8 am to introduce himself and I asked for some more pain medicine. A few more visitors and more waiting and I still hadn’t gotten anything. By 9:30 I was in tears. I told Mike that I was going to try and go to the bathroom. I would call the nurse from the bathroom to help me and ask for pain meds again.
EDIT: Around 10 am I found a broken piece of plastic in my mouth next to my teeth. I’m assuming it was from being intubated?
They had installed a second seat over the toilet to make it higher and it wasn’t lined up correctly. When I peed, it splashed all over my socks and formed a puddle at my feet. I was so embarrassed. I pulled the cord for the nurse, but the same (male) assistant came instead. He just stood there looking at me, with a disgusted look on his face. Made no move to help. I was stuck halfway up and couldn’t use my arms to pull myself the rest of the way. My legs were shaking and I was so uncomfortable. Mike had to ask him again to help and he said he would go look for someone to clean it up and left.
Poor Mike had to help me to the bed, take off my soiled socks and throw them away and clean me up the best he could. We had to ask for new socks a couple of times. When he finally brought them, we asked about the meds again and he said he forgot. Sorry.
The nurse came in and kept apologizing for the delay. I was just happy to get some relief. When my daughter (a nursing student) arrived, she was upset that they hadn’t checked me at all or emptied my drains so she asked the nurse to take care of it. The hurse spilled the cup of bloody fluid all over my bed so I had to get up so that she could change it. After stripping the bed, she got a call and had to leave. The assistant came back, fumbled with the bed and finally my daughter made it for me so I could lay back down. He was telling us what a “shithole” the hospital was and how much he hated it and he wanted to go home early.
Two hours went by and no one had come to clean the bathroom. I had visitors and had to tell them not to use the bathroom in my room. We asked the assistant again, but he shrugged it off.
FIVE HOURS LATER I needed to pee so bad! I ended up walking down the hall to the waiting room to use the visitor’s bathroom. When I walked back, the head nurse asked what was going on. Needless to say, my bathroom got cleaned right away. I was so ready to leave that place!!!
The surgeon was great and cleared me to leave. She said she put in the orders and my prescription. I got the notification from my pharmacy that my prescription was ready an hour later. Still waiting. Another hour went by. The nurses were laughing and talking outside my room. It turns out they had ‘forgotten’ about my discharge papers because they were so busy. Another nurse blamed the surgeon and said she didn’t turn the paperwork in. I have a hard time believing that.
I weighed myself at home before I left for surgery and came in at 220. At the hospital, I weighed 215. I think maybe the scales were calibrated differently because the weights were taken in the same clothes about 2 hours apart. When I got home, I weighed 205. So, 15 pounds lighter!! That’s crazy. I still haven’t looked at the incisions. The doctor said I could take a shower today or wait to take everything off at her office tomorrow. Let’s see how brave I am.
Overall, even though I had a hard time dealing with hospital staff, my experience with the actual surgery was a good one. I am thrilled to have the cancer out of my body. Life is good.
