Category: Experiences

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My Radiation Experience

I have been quiet recently, but I have been that way with everyone, not just the wonderful people who follow my blog. I emailed my family updating them on how I was doing, and my cousin said he was just about to ask me. I wrote back, and I told both he and my other family members the following, and I think this explains it as best as I can.

“It is hard to explain, but when I am having the difficulties I was having, and still am, with trying to recover from the treatments, it is hard to write about it. Everything with cancer is physical and mental, and at times, the mental is the most challenging part to deal with. When I got to my last three radiation treatments, I was in tears and telling my husband that “I didn’t want to do this anymore.” I went through the same thing when I got to number 12 of 16 chemotherapy infusions. It is so hard to see what the meds, treatments, infusions, etc…are doing to your body, yet you have little to no way of controlling anything. Sure, you can fight the side effects, but that is generally done with more medication, and sometimes, that’s the last thing I want.”

So, I have been working on recovering from 10 potent radiation treatments, and it has not been easy. This coming Wednesday will be three weeks since I had my last treatment. My radiation oncologist said that the radiation would continue to work for three weeks after treatment ends, so I hope to start feeling better later this week.

About halfway through my treatments, I started dealing with very severe fatigue. Even the simplest tasks would tire me, so I had to rest as much as possible. I asked one of the techs one day if my radiation dose was more potent than what I had in 2019, and she confirmed that it was. Generally, when you have 10 treatments vs. 25, the amount is more concentrated so that there are fewer treatments, two weeks vs. five weeks.

Along with the fatigue, I had some painful side effects. My whole body started hurting all of the time, and sometimes Extra Strength Tylenol was strong enough to ease the pain, and sometimes it was not. When it wasn’t strong enough, I had to break into my hoard of oxycodone I had left over from my surgeries, which seemed to help. I was also getting headaches, I was dizzy at times, and worst of all, I had pain when I ate.

My treatment was done from the front to the back, meaning that even though my tumor is on the 8th rib in my back, I was lying on my back for treatment. My tumor is also about one inch from my spine, so that is a big reason why I didn’t have surgery. I didn’t think about the tumor’s location with other body parts because I just wanted the tumor to die. 

My radiation oncologist told me that I might have pain when eating but that it would start towards the end of treatment and should stop pretty quickly once treatment was over. I asked her why, and she said my esophagus was close to the treatment area. I hadn’t thought about anything like that, so I was shocked. Sure enough, on the weekend before my last three treatments, I started having pain when eating. At first, it wasn’t too bad, but by the time I reached my last day of treatment, it was excruciating.

On the last Monday of my treatment, I had an appointment with my medical oncologist before my radiation treatment. He asked me many questions about how I was doing with the treatment and my side effects. He is an entirely different type of oncologist, so he is always curious to know how patients tolerate other types of treatment. When I explained my pain when I ate, he immediately asked me if I wanted to have him prescribe oxycodone. I have often read about patients needing pain medication and being denied because there is such a massive issue with addiction. I didn’t think for a second that my oncologist would tell me no because he knew that oxycodone scared me. So I now have more of that medication than I need because he always prescribes 90 pills, but it is helping me with the pain I have when I eat, and so far, just one a day has been enough.

On June 1st, I have a follow-up appointment with my radiation oncologist. She will chat with me to ensure I have no issues with my recovery. When I was discharged from my treatment, she told me it would take 3 to 6 weeks to recover from the radiation treatments. When I see her for my appointment, I will be at five weeks since my last treatment and hopefully feeling much better.

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Radiation Treatments 1 & 2

First, I want to let you know that I do not have any pain in the area where I have my radiation treatments. A lot of people assume that I have pain during and or after treatment and I do not. I do not have any burns or irritated skin either. According to my radiation oncologist I should not experience any of the above.

I received my schedule on Thursday when I went in for my first treatment and the final part of the SIMs appointment. My doctor had told me 10 to 14 treatments, so I was happy that she decided on 10. So my first treatment was a few days ago on Thursday, and my last treatment will be on April 26th. I go in every weekday, Monday through Friday, with weekends off.

Thursday was rough. It was a longer appointment because they had to x-ray me and finish plotting for the coordinates to set the machine for my treatments. I had to have both arms up over my head for that whole process which was almost an hour. By the time they were done, I was crying because the pain was so bad in my left arm. It felt like my arm was being ripped out of the socket. I tried so hard not to cry, but the pain was unbearable. I was so embarrassed, and I apologized to the techs; they were very kind and stayed with me and rubbed my back to try to get me to calm down. I don’t remember it hurting that much when I went through the same process in 2019, so I was shocked that the pain was that bad. Luckily the pain didn’t last long and went away about an hour after I got home.

On Friday, my arm hurt again because it went through so much on Thursday. It seems like they are taking longer to get everything set up once I am on the table. They are not only setting the machine for my coordinates, but they are also moving me around so the markers on my body line up as well. Luckily with all of the plotting out of the way, I only have my treatment when I go in now, nothing extra from here on out except a visit with my doctor each Monday.

I’m sure when I return on Monday for treatment #3, I won’t have any more issues with pain. I will try to keep my movement as limited as I can in my left arm over the weekend. The excessive pain I am experiencing is only in my left arm and that is because I had 18 lymph nodes removed from under my left arm during my cancer removal surgery in April 2019. I realize that it has been four years since that surgery but when there are that many lymph nodes removed there are multiple nerves that are cut and disconnected, so at least in my case, I have never regained full mobility and I am still numb in the upper part of my arm over to half of my breast. I have learned to live with the numbness over the years. I can feel pressure but that is all, so it took awhile for me to be able to find the right pressure to shave under my arm and not cut myself. In my opinion it is a small price to pay for my surgeon saving my life and me being alive today.

As always, thank you for being here and supporting me. 💕

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Radiation Oncologist Appointments

Last Wednesday, April 5th, I had an appointment with my Radiation Oncologist. The office I go to had just been purchased by the hospital where my Medical Oncologist and Surgeon have their offices. Because of the purchase, I had to wait a bit and fill out all new paperwork, eight pages, before I could see my doctor. My husband could not go with me because his office forgot that someone was going on vacation, and they needed him to train a new employee and cover for the person who was out. I was OK with this only because I was meeting with the same doctor I had in 2019 for radiation, so I was comfortable going alone.

Once my paperwork was done, I had a relatively long wait until the PA came to get me to weigh me and take me to an exam room. She then took my blood pressure, temperature, and heart rate. She reviewed a few details from my paperwork, chatted with me briefly, and then the nurse came in to see me. The nurse took a look at my paperwork and then asked me about my surgeries and previous treatments of both chemo and radiation and let me know that my doctor would be in soon.

My doctor knocked on the door and then opened it a little and looked at me with a sad face, and I responded with my sad face and told her that I was happy to see her but not for the reason why. She came into the exam room and hugged me. We sat down, and she asked me what had been going on since the last time I saw her, which was after I had the biopsy of the tumors in my neck done by my surgeon, and the results came back positive for caner. I explained that when I had my PET Scan in March 2022, they found a tumor on my 8th rib on the left side of my back. We talked about the PET Scans I had in July and November 2022 and the most recent one two weeks before my appointment with her.

I asked her how many treatments I would have, and she said 10 to 14. I wondered if I would need to use the medicated lotion I had the last time I had radiation, and she said no. I was relieved because I couldn’t reach where the tumor was located to apply cream due to the limited mobility in my left arm. She said that I would not have any burns this time and I should not have any pain at the treatment site. She told me that she recently had a patient with a tumor very close to the exact location as mine, and the only issue she had was in the last two days of treatment when she was eating, she could feel her food moving through her esophagus. The location of my tumor and the esophagus are very close together, which I wasn’t aware of. I asked her what I could expect my results once my treatment was over. She said that the radiation would kill all cancer cells and that there should be no trace of my tumor left.

I will most likely not know my results from the radiation treatment until my next PET scan, which is in July. Due to having had a PET scan a few weeks ago and then have 10 to 14 treatments by the end of April, it would be too much radiation exposure to have a PET scan any sooner than my regular 4-month scan.

At the end of my appointment, she said that I would have to come back on another day for my SIMs appointment. The soonest appointment she had was the next day at 8:00 am, so I told her I would come back then. I chose that appointment because the next one available would have been yesterday, April 10th, which would have delayed my starting treatment by another week. So, if all goes well, I should start treatment this Thursday, April 13th. I do not have my start date confirmed yet as I am waiting on the office to call me and schedule my first treatment appointment. Once I go in for the first treatment, I will have my other appointments scheduled, and they will all be at the same time every day, Monday through Friday.

The reason why it takes so long to schedule my first treatment is that my doctor needs time to look at the CT that was done at her office, the PET scan images, and the report from a few weeks ago, as well as any notes from my medical oncologist. Once she has reviewed everything, she will determine the exact amount of treatments I will need and what my doses of radiation will be. If I remember correctly, the treatments start at a specific dosage at the beginning and increase as I go through each treatment.

So the following day, I had my SIMs appointment, and that is where they did a CT and marked the exact location for the radiation treatments. After the CT, they placed me in the same position I needed to be on the table so they would know where to line up the radiation machine to my body. Due to mobility issues with my left arm, they had to inflate a pillow made from thick paper to put behind it so I had the support I needed to put my arm back to the handles at the top of the table. For comparison, in 2019, when I had radiation, I had to have support then as well, but substantially more because my mobility was much worse than it is now. Once I was positioned correctly, they marked three locations on my body with clear stickers with x’s. I specifically asked that they not tattoo me as they did last time because that was a nightmare for me, and I had to have laser treatments to get rid of the tattoos after my treatment was over.

Sorry this post was so long, but I wanted to combine both appointments in one post vs. doing two. I will update you when I know when my appointments will be, how many treatments I will have, and when my last treatment will be when I once again get to ring the bell!

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Difficult News

I was going to write this blog post earlier in the week, but I have been overwhelmed with so many thoughts and emotions since I met with my oncologist on Monday, March 27th.

On March 21st, I had my most recent PET Scan. Everything went fine with the scan, as usual. I sat next to a sweet 80-year-old lady in the waiting room. She started to chat with me because she was complaining about the wait, and I told her that the wait could be long sometimes; it depends on what type of imaging you are there for and how many appointments there are. She asked me why I knew that, and I explained that I come in every four months for a PET scan since I am a stage 4 cancer patient. She asked me a few more questions and then handed me the book she was reading and told me to keep it. The book is by Zig Ziglar, Embrace the Struggle, Living Life on Life’s Terms. I haven’t started reading it yet, but I will soon.

This past Monday, I went to see my oncologist for my regular 30-day appointment and to get my PET scan results. My blood looks pretty good for me anyway, and I was happy to see that my ANC was 1.4, which is excellent considering that the low number in the acceptable range is 1.5, so that is the highest my ANC has been in months! So we were very happy with my blood panels.

Then we moved on to my PET Scan results. Unfortunately, my tumor has grown. It is roughly 1/3 of an inch larger, which is a slight increase but nonetheless an increase. My oncologist immediately said that I would need radiation treatments to stop the growth of my tumor and hopefully kill it. Luckily I will be going back to see the same radiation oncologist I saw in 2019 for my treatments which is great because I trust her and adore her. I will likely have three weeks’ worth of treatments or 15 sessions. I don’t know all of the details yet, but I will find out when I have my consultation and plotting appointments next Wednesday, April 5th. Matt will be going with me to my appointments next Wednesday, so it will be nice to have him with me because I will be there for half the day.

Understandably, I am overwhelmed with my thoughts and emotions. I am wondering what is next after radiation. My oncologist made it sound like I may not be taking iBrance while I am going through radiation, so that I will ask about that on Wednesday. He also said that he wants to keep me on iBrance for years, but if it proves ineffective, I may have to go through chemo infusions again, and he has told me it will be much tougher this time vs. 2019. So I plan on getting some of my questions answered because, by the time I go in for my appointment next Wednesday, my oncologists will have discussed what is going on with me and the next steps.

I wish I had better news to share but cancer is tricky and you never know what it will do, especially when it is as aggressive as mine has been.

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It’s Been A While

I am sorry that I haven’t updated in a while. I have had a lot going on, and at times, it has been overwhelming. I realized this morning that a year ago today, I was diagnosed with stage 4 metastatic breast cancer. This past year has been up and down for me. A year after being diagnosed, the two small tumors that I found on the side of my neck are gone. The tumor on my rib on the left side of my back has shrunk but is still there.

For the last two months, my blood has been on the decline. My white blood cell count and red blood cell count have been low, which is normal for me, but my white blood cell count has been dropping and getting close to anemia levels. My ANC, which is the Absolute Neutrophil Count, is also falling. The low end in the range is 1.5, but my oncologist says I can go as low as 1.0, but anything lower than that is serious. At my last appointment at the end of January,  my ANC had dropped to 1.1. “ANC is an estimate of the number of infection-fighting white blood cells in your blood. Knowing your ANC can help you and your doctor assess your risk of infection.”

So what does this mean for me and my treatment plan? It means that my cancer meds are wearing my body down. I rarely get enough rest to prevent me from feeling tired, so I am having more bad days than good. On the bad days, I feel like I am much older than I am. I have days where my entire body hurts, and when it’s really bad, I have to take pain meds to get some relief. My next appointment is on the 27th, and I have a feeling that my oncologist is going to lower me to 75mg because it feels like my system is not handling the medication very well anymore. I could be wrong, but I’m not sure. I trust my doctor and will, of course, do whatever he suggests. He reminds me often that the goal is to keep my quality of life as good as possible and to kill my tumor so I will go into remission. I will, of course, update you all after my appointment. Also, my next PET scan is coming up, it isn’t scheduled yet, but it will be in the first week of March.

OK, I do have some good news! I went to the eye doctor for my check-up, my last one was before Covid in 2019, and my prescription changed dramatically. Recently I have felt like my vision hasn’t been as clear as it was before, so I thought that it might have gotten worse. But the doctor told me that I needed my prescription to be lowered, not raised. She asked me when I was diagnosed with diabetes and what my last A1c was. I am very close to being prediabetic, and because of that, my contacts have been too strong for my eyes, hence the blurry issue. She asked me what I had changed, if anything, and I said I had mostly been eating a Keto diet. So Keto has been perfect for me; it has helped me lose a little weight and has made a big difference in my A1c and, therefore, my eyesight. My doctor has told me to keep doing what I am doing because I could possibly eliminate my diabetes which would be wonderful!

I will update again after my next appointment with my oncologist; hopefully, I will have good news concerning my blood labs.

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Oncologist Appointment on December 5th

On Monday, I had my monthly appointment with my oncologist. As usual, my vitals were taken, and my blood was drawn for my regular blood panel, which is a CBC w/differential. A CBC w/ differential measures the number of red blood cells, white blood cells, and platelets in the blood, including the different types of white blood cells (neutrophils, lymphocytes, monocytes, basophils, and eosinophils). The amount of hemoglobin (a substance in the blood that carries oxygen) and hematocrit (the amount of whole blood that is made up of red blood cells) are also measured. A CBC with differential is used to help diagnose and monitor many different conditions, including anemia and infection.

When my doctor came into the exam room, he handed me my blood panel results and told me that my blood looked good this month! My white blood cell count went up from last month to 3.9, which is only .1 from the low end of normal, and my ANC went up to 1.7, which is .2 into the acceptable range, which is the highest it has been since I started my medication in March. WBC count, RBC count, and ANC are the primary three levels that my oncologist looks at. My red blood cell count is lower, so it needs to be watched because if it lowers any more, I could develop Anemia. I take Iron every day, and I have been getting my B12 shots, so I am hoping that in the next month, my RBC count will improve.

Once we were done discussing my results, my oncologist said that he felt I was doing well and that I had adjusted well to my medications, so there was no need to change my treatment. We discussed the frequency of PET scans, and we agreed that I would have my next PET scan in early March, four months after my last one.

Yesterday I was not feeling well, which is not uncommon after starting to take the iBrance again after a week off and getting my Faslodex injections. Today I am in quite a bit of pain, primarily overall body pain, mainly from the Injections. Faslodex, for me, is very unpredictable. Some months I can barely tell I have had the injections, sometimes, I get terrible headaches and injection site pain, and sometimes, my whole body hurts like it does today. Generally, any discomfort or pain goes away with Tylenol and only lasts for a day or two if I have any at all.

Thank you again for your continued support! 💕

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