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. 💕
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.
A few days ago, I had an appointment with my radiation oncologist. I hadn’t seen her in over two years, so it was nice to see her, but I wish it had been under different circumstances. After we caught up on where we had been, I was finally able to show her the pictures from our vow renewal ceremony, so that was nice, and what we had been doing; we discussed my cancer.
Unfortunately, since the CT of my neck came back clear, she has to wait for the results from my PET scan. She needs to see the exact size and location of the tumor to figure out if she can treat me or not. If there is even the slightest part of the tumor in my previous treatment area, she can’t put me through radiation. I didn’t know that you couldn’t radiate the same area more than once, so we must have clear images to compare from 2019/2020 to today. My PET scan is tomorrow, Friday, and I am going back to my oncologist next Tuesday for the results.
So after my initial appointment, my doctor asked if I could come back in an hour to do some plotting with the tech. I didn’t need to be anywhere, so I said I could come back, no problem. When I came back, they took me to the CT room, measured a few coordinates, and went ahead and marked me with stickers in case I could have radiation soon. When I laid down on the table, my doctor came over and felt where the tumor was, and she said, ” it seems like it is very superficial; that might be why the CT scan didn’t see it.” I hadn’t thought of that being the reason for the clear CT, but it makes sense.
Next, they had me put both arms over my head, which is the position I will have to be in for the radiation treatments. It has been almost three years since my first surgery in April 2019, and it still hurts to have my arms up over my head for any length of time. I have gained a lot of mobility back since that first surgery but not 100%. Because of the pain I am in when in that position, they will make molds for me to rest my arms in so the pain and pressure will be decreased, making me more comfortable. When I put my arms up, my doctor felt the tumor again and said it had dropped slightly in location, taking it closer to the area where I had radiation before; this is not good if I want radiation to be the primary treatment to get rid of the tumor.
So, now we are waiting for my PET scan and the results. What will happen if I can’t have radiation? I am guessing that I will have to have surgery to remove the tumor, but after that, I am not sure. I will be asking my oncologist about that when I see him on Tuesday next week.
Yesterday I had my six-month follow-up appointment with my surgeon. It has been six months since I received my clear mammogram and ultrasound results and ten months since my last surgery. Two years ago, I met my surgeon for the first time, and he knew just by looking at the ultrasound he was performing in his office that I had cancer. The next day he did my first biopsy, and a few days later, he diagnosed me with breast cancer. I can’t believe that it has been two years since that horrible day, but I am grateful that I have had him by my side, helping me fight this horrible disease over the past two years.
Everything looks good as far as healing from my last surgery, and I have no signs of complications. I told him about a few areas where I am having some pain when pressure is applied, like during a self-exam. He said that the pain is nothing for me to worry about; it’s very normal considering I have had multiple surgeries and radiation.
I also mentioned to him that the area under my left arm that has been painful on and off since my first reconstruction surgery back in November of 2019, is still uncomfortable. The area bulges out past the curve of my breast, making it difficult to wear a bra for an extended period of time; plus, when I am not wearing a bra, it is obvious if my shirt isn’t completely loose. I have tried lifting weights and working out when I have had the energy, but it hasn’t helped reduce the area at all. He said that I wouldn’t be able to exercise the area to reduce the size or for it to go away, and offered to cut it out if I would like him to. So, we scheduled my surgery for next Thursday, March 4th, at 9:00 am.
Do I want to go through another surgery? Not really, but the discomfort and the way the area feels and looks to me are enough to override my feelings about having a fifth surgery. Luckily this surgery will be quick like my port placement was, about 30 minutes, so my healing and recovery should be relatively easy to get through.
Going in line with my last entry, here is an excellent article about adjusting to life post-cancer. It’s so easy for people to think that just because you are done with the surgeries and treatments, that you are back to normal. I get so tired of people asking me if I am done with “everything” and then responding with “so you are all good now” when I respond by saying that yes, I am done with the surgeries and treatments, but I am on medication the next ten years. I generally don’t say anything more as it is clear that the person I am talking to doesn’t even remotely follow what is going on with me. I know that the world doesn’t revolve around me, but it is somewhat insulting when someone I thought was a good friend, has such a conversation with me. I can say, though, that I have had this happen a few times, but they are still my friends, and I love them, so I am still here to talk whenever they want.
This article describes the hell that I am currently dealing with, and have been for months, and in many parts, it is almost as if I had written it myself. As I try to get through the bad days as best as possible, I have had a very positive change, thanks to this article. I have finally been able to get a handle on my issues with not being able to sleep, and I credit two things for that; the first is that I have found an app that works well for me when it comes to relaxing at bedtime, so I can fall asleep quickly before my mind has a chance to race and keep me awake. {the app is called loona}. The second is that now that the neuropathy is mostly gone from my hands, I am making jewelry again, which makes me very happy, so my stress level is much lower on most days. {My website is mmillsdesigns, where you will find my online shop and blog about my small business}.
I want to conclude by saying that it may sound odd to anyone who has not been in the position of having doctors by your side for many, many months, saving your life from cancer; that the routine, even if it involves the terrible experience of chemotherapy treatments or many surgeries, becomes something that you depend on and get used to as time goes by. It’s almost effortless to get emotionally attached to your doctors when you see them regularly, especially in the beginning after being diagnosed. I was going to appointments twice a week for months as the severity of my breast cancer was coming to light. My chemotherapy treatments were every week for four months, and my Radiation treatments were every weekday for five weeks. So when you have been deemed a survivor, for me, it was after my last clear mammogram on August 17th, 2020; there is a sense of relief as you hear the words “no evidence of disease,” but there is also an overwhelming feeling of loss as well because now all of the hustle and bustle centered around saving your life is going to slow down a lot as the doctor’s appointments become less frequent; I currently see my oncologist every three months, and I see my surgeon every six months. As I have said in past posts, the first two years after the end of my treatments is the most critical time in survivorship because the chance of re-occurrence is at its highest. After two years have passed, the chance of re-occurrence will drop slightly, and when I reach five years with no re-occurrence, the chance will substantially drop; so, that is why my doctors are closely monitoring me for the next few years.
After reading my commentary and the article below, I hope that you, my dear readers, will understand a bit more about the complexity of post-cancer life and survivors’ experience.
Medically reviewed by Jenneh Rishe, RN — Written by Jennifer Bringle on December 17, 2020
Moving on and finding some semblance of normalcy is much more difficult than advertised.
I’d just closed my eyes for a nap when the trill of the phone ringing snapped me back to consciousness. Gingerly reaching for the receiver, I answered hesitantly, nervous as to who might be on the other end.
It was my surgeon, calling with the results of my mastectomy pathology.
“The tissue from your breasts was totally clear,” he said with a smile I could literally hear in his voice. “And your lymph nodes were all normal, too. There was no evidence of disease.”
These are the four magical words every cancer patient longs to hear: no evidence of disease.
They’re the goal — the best possible result of months of grueling treatment. They mean you get to live.
Months earlier, I wasn’t sure I’d ever hear those words. After finding a lump in my left breast, I was diagnosed with stage 2 invasive ductal carcinoma, along with the BRCA2 gene mutation.
I faced a gauntlet of chemotherapy followed by a bilateral mastectomy with reconstruction.
There were bumps in the road along the way — an emergency room visit and an allergic reaction to one of my chemo drugs — but I’d finally reached the end.
I could finally relax and get back to my “normal” life.
The first clue that this would be easier said than done came a few weeks later, when I found myself in tears after being released by my surgeon for annual visits instead of the every few weeks I’d been seeing him up to that point.
Driving home that day, wiping away the tears suddenly spilling down my cheeks, I couldn’t figure out why I was so sad. Shouldn’t I be happy?
What I would soon learn is that this is a common occurrence among cancer survivors.
Once treatment ends and we get the all clear, the world expects us to move on, find our “new normal,” and become those smiling survivors we see in marketing campaigns.
The reality is, moving on and finding some semblance of normalcy is much more difficult than advertised.
In the days and months after completing treatment, I dealt with an array of unexpected emotions.
Sadness at the end of a comfortable routine with my doctors, whom I’d become very attached to during the months they stood alongside me, trying to save my life.
Fear that every little pain or cough could be a sign of new cancer or cancer that spread.
And grief over all I’d lost — my breasts, my hair, and trust in my own body.
As time wore on, I realized instead of becoming happier and less afraid, my anxiety was reaching new levels.
Instead of paying attention to my son and husband, I was often distracted, Googling symptoms on my phone.
Even happy moments like birthdays and vacations were marred by my irrational fears that a headache was a brain tumor, or my backache was more than simply a pulled muscle.
I knew I had to do something to get my anxiety under control.
Though I’d resisted asking for help, pridefully insisting I could handle it myself, I realized the time had come to seek professional assistance.
I scheduled a therapy appointment with a counselor specializing in the needs of cancer patients and survivors.
Even though she couldn’t personally understand what I was going through, her training and experience gave her a level of empathy and insight that made talking to her about my anxiety calming and productive.
During those sessions, she taught me another valuable tool to help quell my anxiety: meditation.
Through basic mindfulness techniques like focusing on my breath and learning to acknowledge and then dismiss negative thoughts, I became better able to manage my anxiety on a daily basis.
Using a guided meditation app before bed began to replace my nightly symptom Googling, leading to easier sleep.
While working on my mental health, I also started focusing on improving my physical health.
Cancer treatment left me weaker and more sedentary, so I started incorporating walks into my daily routine to rebuild my strength. Whether it was a quick jaunt on my lunch break or a treadmill workout in the evening, adding vigorous-yet-gentle physical activity helped me feel stronger and more energetic.
I also began paying more attention to what I ate. While I certainly still indulge in my beloved sweets, I also try to eat more fruits and vegetables daily.
These manageable changes to my diet and exercise may not prevent my cancer from returning, but they will help me build a body that’s strong enough to endure treatment again.
While all these new things certainly helped me adjust to life after cancer, I knew I needed something else to help manage my anxiety. After talking with my doctor, I made the decision to give a mild antidepressant a try.
I’d been resistant to adding another medication to my daily regimen, but I also reminded myself that I didn’t question taking a pill that might prevent my cancer from returning. So why was I so reluctant to take something that could help me with the anxiety that had taken over my life?
For those of us who’ve survived cancer, there’s a great deal of pressure to live up to the persona of strength that gets bestowed upon us during treatment.
We’re treated as though we’re almost super-human — the ones who beat death.
But the truth is, that fortitude is often a facade, masking the fear and pain that cancer survivors live with after treatment ends.
The process of working through those emotions to achieve a sense of normalcy in our lives is an ongoing, personal journey.
While what worked for me might not work for everyone, finding my own formula has allowed me to regain something I thought I’d lost after cancer — happiness.
As I said in my previous blog post, I have had some struggles recently. I have been trying to write about what has been going on, but it has been challenging to put it into words. I am still not prepared, but there may never be a good time, so I may as well start to talk about it.
I had a check-up with my oncologist back on the 7th of January. I didn’t write about my appointment right away because it was an unusual appointment, not my usual, “Yes, I am doing fine on my medication. My sleep is improving, as I am averaging just one night a week, where I am still awake at 5 or 6 am, instead of several nights a week. I am still fighting fatigue…blah, blah, blah…”
My bloodwork has improved to where all of my levels are normal except for my red blood cell count, it’s still low, and unfortunately, it may be my regular reading from now on. It’s not terribly low at all, 4.18, where 4.20 to 5.40 is a normal range. But being even slightly low, I can feel it, so hearing that I might not ever be in the normal range makes me terribly sad as I hate feeling this way. I asked if there is anything I can do, that some cancer patients say that they take iron to fight the fatigue. My PA said that I could take iron, but she cautioned me that it could upset my stomach, so I should take it only every other day to start if I decide to try it. She also said that she had heard that there is a liquid version that might be easier to take, but she hasn’t seen it, so she wasn’t even sure where I could get it. I am on the fence about taking iron, so for now, I am not doing it.
My PA explained that one of the essential readings they are looking at when I come every three months is my Hgb or hemoglobin. Low hemoglobin levels usually indicate that a person has anemia. There are several kinds of anemia: Iron-deficiency anemia is the most common type. This form of anemia occurs when a person does not have enough iron in their body, and it cannot make the hemoglobin it needs. High Hgb is known as polycythemia. This means you have too many red blood cells. Polycythemia vera is a cancer of the blood in which your bone marrow overproduces red blood cells. With polycythemia, a blood test also shows a high red blood cell count and high hematocrit. So low or high Hgb would be bad for me, it would mean I am either anemic, which was also a concern during my chemo treatments, or I have cancer in my blood. My Hgb is a little low, only one point from the lowest acceptable level, but nothing to worry about for now.
Now for the tough part…for most of my appointment, I cried a lot. It was hard to talk about, even with my PA, whom I adore. I kept looking away from her while I was talking and crying; I was embarrassed. Why was I crying? It was a lot of things, but mainly the fact that I have had an overwhelming feeling of guilt recently. Why do I feel guilty? As it is, it’s hard being a cancer survivor, and for me, it is tough because I have always had a great deal of empathy for people, but now it includes other cancer patients. Recently quite a few people I know, through various ways, are dealing with having a cancer recurrence. I feel guilty because I am still doing well; I am OK for the most part. They are experiencing my greatest fear, and I am feeling guilty because it isn’t me. It is also a reminder that my breast cancer was incredibly aggressive, and it could return at any time.
It is easy for most to say, “don’t live in fear, don’t worry about it,” but honestly, someone who says that to me clearly doesn’t understand how horrifying it is to go from barely needing to see a doctor to countless scans, blood draws, chemotherapy, radiation and four surgeries in a matter of fourteen months. All three of my doctors, my cancer treatments, everything I went through saved my life without a doubt, but it also damaged me in every way. I don’t know if I will ever be myself again, many cancer patients tell me that I won’t be, but I am doing everything I can to defy that future.
At the end of February, I will reach the second anniversary of my first appointment with my surgeon when I was diagnosed with breast cancer. In many ways, I can’t believe that it has been that long already, and in other ways, it feels like it has been a lifetime.
Thank you for being here; it helps to know that people care enough to read my blog, that the information I am sharing helps other cancer patients and their caregivers, and it helps me in more ways than I can say.
