How I Learned to Adjust to Post-Cancer Life

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.

Fearful — often irrational — thoughts about cancer recurring or metastasizing began to disrupt my daily life.

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.

Three Month Follow-up with My Oncologist

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.

Birthday Trip 2020

Mood: Exhausted 😴

A few weeks ago, my husband and I were finally able to get away and take our annual birthday trip. This particular trip had been rescheduled a few times due to my chemo treatments last year, and the resort we wanted to go to, not opening when scheduled due to the pandemic.

It wasn’t easy to travel internationally during the pandemic, but it was well worth it. We had to get a COVID test within ten days of arriving in Jamaica, and within three days of arriving, we had to go online, fill out a form for each of us, and send our COVID results in for approval. So, time was short, especially to get the test results back and sent in. We didn’t hear anything back after a little over a day, and we started to panic, so we called our travel agent to see if she could help. It just so happens that she has a contact at the Jamaica Tourist Board, so she got in touch with her, had us send some information to her via email, and we had our approvals the day before we were scheduled to leave by 6:30 am the next morning. Whew!!

I am not going to go over all of the details of our trip because this isn’t a travel blog; it’s a blog concerning everything related to and revolving around my breast cancer. So, something happened while on our trip, and to say that my reaction shocked me is an understatement.

A few days before we left, I let my husband know that I was not ready for the trip as far as my energy level was concerned. I had been battling fatigue, and I still am to this day, so I was concerned that the trip was going to wear on me far more than it did back when I was healthy. But I needed the break as I had recently been under a lot of stress, and it felt like everything I was dealing with was becoming far too much for me. We all have our breaking point, right? Well I was very much on edge, and I knew that I was headed for a mental breakdown if I didn’t get away to relax and destress. As it turns out, I was right; about halfway through our trip, I was already physically exhausted even though I kept my activity level much lower than I usually do while on vacation. But I powered through because we had some wonderful surprises during our trip that made everything we had to go through to get there, worth it!

So two amazing things happened during our trip! The first was getting to see and spend time with a few employees from the resort we were supposed to go to. Because the original resort didn’t open on time, there are several people from the entertainment department that are traveling around and performing at some of the resorts that are open in Jamaica. We have been friends with these amazingly talented people for years and years, and they are like family to us. We hadn’t been able to see any of them in two years, so I was super excited when I found out that they would be at the resort we were going to. So we had a family reunion of sorts, and we were able to have lunch together quite a few times and find a little bit of time to spend together on the nights they were at the resort to perform.

It was amazing to get to spend with our friends, and it made me so happy! But, at some point during the trip, I don’t remember precisely when, out of nowhere, I had a complete breakdown. Sadness suddenly overcame me, and at first, I didn’t understand why. I was embarrassed because an employee saw me start to cry and walk away from where we were seated, and she followed us out of concern for me. It was very kind of her to check on me, but I was overcome with grief and sadness, not a good moment for me, especially while on vacation in my favorite place in the world. I remember feeling like I did when I was diagnosed with breast cancer. I asked, “why did this have to happen to me? why me?” while crying my eyes out. It was painful because I remembered how things were two years ago when I saw my friends. Life was normal two years ago; life was good, or so I thought. The reality is that I already had breast cancer in September 2018, but I didn’t know I had it; there were no signs of it at that time. I eventually calmed down and enjoyed the rest of our trip, but my breakdown was a harsh reminder that it had not been that long since I found the first tumor and started down the long road of fighting cancer.

Our friends & family in Jamaica

The second amazing thing that happened was getting to see two more of our friends from the scuba diving department. My husband is a Master Diver, and a considerable part of our trips involve him diving twice a day, every day. As with our friends from the entertainment department, we have known most of the dive crew at our favorite resort for years, so they are also like family. My husband received a curious message from a friend the day we arrived in Jamaica, and we didn’t understand what he meant until a few days later when he arrived at the resort to dive with my husband! It was an incredible surprise to see our friend and find out that he was staying for the week to dive specifically with my husband. Our friend lives in Ocho Rios, where our favorite resort is located, and that is one and a half hours from where we were. The next day our friend’s boss arrived at the resort and had lunch with us! So we had another friend of ours came to see us, and that was another wonderful surprise! It was great to see my husband so happy and enjoying his week with a dear friend and having a few surprises along the way; it absolutely made his trip!

All in all, we had a wonderful trip, and it was great to get away and relax somewhere besides home. The next time we can travel and see some of the people we love, I will not be surprised if I have the same reaction; in fact, I will be expecting it. I am human, after all, and I have a very different outlook on life after everything I have been through.

Cherish your family and friends, and stop taking people for granted because someday, they might not be there anymore.

Fatigue & Depression

I have been going through quite a bit of fatigue and depression lately. I am still experiencing fatigue almost every day, so when I do have a burst of energy, I make sure to take advantage of it. On days when my entire body is hurting, I try to remind myself that I had my 4th surgery not that long ago, so I don’t need to be so hard on myself when I just want to rest. Resting has become another problem in the form of not being able to sleep properly. It is not out of the realm of possibility for me to be awake until 2 or 3 in the morning, sometimes even later, at least a few nights a week. I realize that fatigue is linked directly with depression, so I am beginning to understand how everything I have been dealing with within the last few months is all part of the same problem.

Not all of my depression is linked to breast cancer, but most of it is. I was talking to a breast cancer patient the other day, and she was asking me how long it has been since I had finished each portion of my treatment. I hadn’t thought about the timing of everything in a while, so as I was answering her questions, I was surprised that time has passed much quicker than I thought. It has been 11 months since my last chemo treatment, 7 months since my last radiation treatment, and 4 months since my previous reconstruction surgery; at times, it feels like a lifetime ago, but when I am having a bad day, it all seems like it happened yesterday. Even with all of that time passing so quickly, my body and mind are still healing. I have been experiencing what I thought were some of the side effects that I had at the end of chemo again, but chemo ended almost a year ago, so I am beginning to realize that some of them are symptoms of depression, as described below. Luckily, we are going on vacation soon, and the timing couldn’t be more perfect. I need a break; I need time away from everything that has been hurting my heart and soul lately, and I need to get my mind and body back on track, and I will!

Depression may be a side effect of breast cancer and fatigue is often a symptom of depression. Some people may have a tendency to depression, which treatment can make worse. At the same time, fatigue itself can lead to depression. Not knowing why you feel drained week after week, and not knowing that this abnormal feeling is normal for many people going through treatment, can make you depressed.

Treatment for breast cancer may leave you feeling sad, tired, or depressed. These feelings are complex conditions, resulting from and affected by many factors: your cancer diagnosis and treatment, aging, hormonal changes, your life experiences, and your genetics.

If you’re abruptly going through menopause 10 years earlier than you naturally would, with a quick lowering of hormone levels, you may experience feelings similar to postpartum depression.

Sadness is a natural part of your breast cancer experience, something you need to express and move through. If you don’t allow yourself to feel sad and grieve, the unresolved grief gets in the way of feeling better and getting better. You may be having hot flashes and trouble sleeping. You may be feeling overwhelmed or even debilitated. All of these factors can lead to fatigue and depression.

How can you tell the difference between fatigue, sadness, and clinical depression? The symptoms of clinical depression include:

  • an inability to cope
  • an overwhelming feeling of helplessness and hopelessness
  • inertia
  • an inability to concentrate
  • memory problems
  • panic attacks
  • loss of pleasure in what used to make you happy
  • lack of interest in sex or food
  • sleep problems

If you think you’re depressed, talk to your doctor. If your doctor doesn’t have experience treating depression, ask for the name of an accredited psychotherapist. Together you can sort out if what you’re feeling is depression or extreme fatigue. Therapy can help you feel supported and allow you to talk about what’s bothering you. Antidepressant medicines can help ease feelings of sadness and anxiety and help you feel better. An accredited psychotherapist with experience treating depression can help.

Follow-up with My Surgeon

On Wednesday, I went to see my surgeon to go over the results of my mammogram and to have him take a look at my breast implants and surgery site from my surgery that was just about four months ago. When he came into the exam room, he said that yes, I have some small cysts in my right breast, but that he is 0% concerned about them. I asked him if the cysts could turn into cancer, and he said no, they wouldn’t as they are benign. I asked him if anything needs to be done about the cysts, and he said that we do not need to do anything concerning them; they will most likely go away with time. He said that he is very pleased with the images from my mammogram and ultrasound and that everything is clear and looks great! {He explained to me when he ordered the mammogram that we had to wait for at least six months after finishing my radiation treatments to do it, or the images would be cloudy, so that is why I had to wait so long.}

Next, he took a look at how I have healed from my last surgery and how my breast implants are settling in. Everything is looking good so far, but my chest has not finished settling into place, meaning that the area under my left breast, in particular, has not dropped down and rounded out, it is still somewhat flat. It takes time for the internal part of the chest to heal and for the implant to get into place, so there is nothing to be alarmed about; my body just needs more time.

We do have to watch for a complication from my breast implants. It is called Capsular Contracture, and it is a breast augmentation complication that develops when internal scar tissue forms a tight or constricting capsule around a breast implant, contracting it until it becomes misshapen and hard. When my surgeon put my breast implants in, he added donor tissue to help prevent this complication from happening, but that doesn’t mean that it won’t happen anyway. He said that if it does happen, I will need to gauge my level of pain, watch for distortion, let him know that I have a problem, and that I am in pain that I can’t bear. He explained that some patients would have a severe case of Capsular Contracture and have very little pain, while others would have a milder case and have horrible pain. He said that if the pain is too much for me, I need to tell him to fix it, meaning I will need to go into surgery and have my implants removed. Whether or not I would need to have a new set of implants put in or have them left out is hard to say; it just depends on the circumstances. Being the excellent surgeon that he is, he told me that this could happen when we were discussing the option of breast implants. I told him that it was worth the risk to me as I was feeling very out of proportion after my first reconstruction surgery. I wanted to feel like me again and not the stranger staring back at me in the mirror.

The reason why we were even discussing this horrible complication on Wednesday was that he pointed out that the implant in my left breast is much firmer than the implant in my right breast during my exam. The firmness is caused by the 25 radiation treatments that were part of the breast cancer treatment performed on my left breast. So, it is already firm, and I need to watch it and check to make sure that I don’t have any harder areas that could indicate a problem is developing.

Unless I notice anything in the meantime, I will not go back to follow-up with him until six months from now. I have fewer appointments with my oncologist and surgeon these days, a real sign that I am healing and adjusting to life after breast cancer. 💕

My First Mammogram in 18 Months

On Monday, I had my first mammogram in 18 months. Once my temperature was checked, I signed the necessary paperwork, and then I went over to the registration area. I noticed while going through the process of registering that the paperwork from my surgeon ordering my mammogram, said to do an ultrasound “if medically necessary.” I prayed that I would not need an ultrasound because I knew that meant that they saw something during the mammogram and would need to take a closer look.

The breast center that I go to, which is in the same building as my surgeon and oncologist, takes terrific care of me. I barely waited for 5 minutes before the nurse came to get me to take me to the back so I could change into a gown. I love the gowns there, they are pre-heated, and so are the blankets! It’s the little things I guess, anything to feel more comfortable when you are waiting to go in to have your breasts smashed in a machine. I was incredibly nervous because I couldn’t help but think about the last time I had a mammogram; when the results said that I had a mass that was “highly suspicious of malignancy.”

When I went back for the mammogram, the first task we needed to take care of was to go over everything I had been through concerning my breast cancer and treatment. It was hard to recount everything from the number of treatments to how many surgeries I have had, what type of surgery it was, and when everything occurred. It was hard to go through the details, not because I couldn’t remember them but because I could, and it was just so much to go through in a short period of time. Even now, when I start thinking about everything that has happened, I get depressed, and sometimes I am brought to tears. I am lucky to be here, and I know that, but that fact doesn’t take away the memories and pain of every blood draw, surgery, and treatment that I have endured.

I didn’t realize how different the process of a mammogram would be with breast implants, so it was a shock to go through what seemed like twice as much imaging. First, I had a regular mammogram, and the standard trays were used with the usual amount of images being taken. But since I have breast implants, I had to have extra imaging done with my implants being pushed up and out of the way. I won’t lie, it was painful to have the edge of the metal platform jam into the scars under my breasts, but it was necessary to be in that position to move my implants out of the way. Once we had finished the mammogram, the tech had me go back to the waiting room while the doctor looked over the images. I waited for a few minutes, and when I saw the tech come back, I was hoping that it was time to leave, but no, the doctor asked for a few more images. So we went back to the mammogram room, and she took two more images, and then sent me back to the waiting room.

I waited for a few more minutes, and then a different and very pregnant tech came to get me. I noticed right away that she was taking me into the ultrasound room, and I immediately got upset. She told me not to worry and that this was normal, but I knew better. She only imaged my right breast, the side where I did not have breast cancer. Once she was finished getting more images, she took me back to the waiting room while the doctor took a look at the ultrasound images. After a few minutes, the mammogram tech came to take me back to the mammogram room for one last mammogram image of my right breast. Now my anxiety is starting to kick into high gear! “What did they find? Do I have cancer in my right breast now? I can’t go through everything again!” My mind was racing, and I wasn’t going to calm down until I knew what was going on. Still, at the same time, I truly appreciated that they were taking their time to make sure that they were able to see and identify what was showing up in the images and give my surgeon and me accurate information.

This time instead of taking me back to the waiting room, the tech had me wait in the mammogram room while the doctor took a look at the last image. She said that I might have to go back to the ultrasound room with the doctor so she could pinpoint the area that was causing concern. Sure enough, I went back into the ultrasound room, and the tech did some measuring and marked an area with a pen for the doctor. The doctor came in and took a few extra images, looked at everything carefully, and then told me that I have some tiny cysts in my right breast, but they are benign, there is no sign of cancer! 😊