Follow-up with My Surgeon & Another Big Milestone

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.

I will keep everyone updated as to what happens.

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.

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.

My 4th & Final Surgery

Mood: Relived 😌

**Please note, if you are going to judge me for my choices, just go ahead and stop following my blog. It is unfortunate that I have to even mention this here in my blog that has been a huge comfort to me while on this terrible journey. Until you have spent even just one day of my cancer journey in my shoes, you have no right to judge me!**

I decided last Thursday to call my surgeons office to see if it was possible to come in and see him before my August appointment. When I wasn’t able to get a call back in a timely manner, time was not on my side so I needed to speak with someone quickly, I remembered that my surgeon had told me to never hesitate to text him if I needed him for any reason. So I decided to text him knowing that he was most likely going to be in surgery all day so it might be a while before he could respond back to me, but I was shocked when he responded back about 5 minutes later. I explained my situation to him, he answered “probably yes” when I asked him if we could move my surgery up to now and he said to call his office and schedule an appointment for Monday morning. If they said there were no openings, I was to let them know that I had already spoken to him and that he needed to see me on Monday. I was thrilled that he wanted to see me and talk since I was not supposed to see him until a few days after my mammogram in August.

So on Monday I went in to see him and talk with him again about my final surgery. We had previously talked about the surgery back in February at my 3 month check up for my first reconstruction surgery that was back in mid-November. I asked him a lot of questions in February so when I saw him on Monday I had all of the information I needed to make a decision. He examined me again and we talked about the details of the surgery. He wanted to make sure that my husband and I were on the same page with him as far as the results I would get from the surgery and that we didn’t have any unrealistic expectations. We let him know that we understand what the results will be and I told him that I wanted to go ahead and get the surgery done. His surgery schedule has changed quite a bit due to the virus but he was thinking that he could get me in next week because the surgery will only take 45 minutes to an hour. So on Tuesday, April 28th I will have my 4th and final surgery, and it is classified as a second reconstruction surgery due to having breast cancer.

So here is the big question…..what am I asking my surgeon to do and why?

Going through breast cancer was a terrifying and life changing event in my life. No matter how well you appear to be fighting the battle, it forever changes you inside and out. There were many stages that my body went through during the last year…..losing my hair all over my body, losing both of my big toenails, having burns on my chest from my collarbone to underneath my breast, losing feeling from under my arm to half way across my breast from having 18 lymph nodes removed {I am still numb a year later}….the list goes on and on. I will probably never get used to seeing the scars on my chest and yes, the scars will fade eventually, it has helped a lot to use Bio Oil on them, but the scars are big and long in some places and even though they were put there by an amazing, talented and experienced surgeon, they are more than just scars on the surface, they are much deeper than that, they are a constant reminder of the hell I have been through in the last 16 months.

When I had reconstruction surgery in November my surgeon left the side that the cancer was on a little bit bigger because the radiation treatments can shrink the area that is treated. To make me as symmetrical as possible he had to take more tissue out of the right side of my chest than we expected, so it ended up being a pretty big reduction. Once I had healed from the reconstruction surgery it was obvious, to me anyway, that the left side was still bigger than the right as it didn’t shrink as much as expected and I felt out of proportion, plus I had lost a lot of volume, at least a cup size if not a little more. At first it was nice to have a smaller chest, something I have never had before; but as I healed and my chest settled into a natural position, it really began to bother me that after going through two surgeries, I am not happy with how my chest looks. I asked my husband what he thinks but he loves me no matter how I look, so this was not any pressure or comments from him at all, it is all about me and what I see when I am looking in the mirror. I need to feel whole again, feminine, beautiful….and I don’t feel those things at all so I am doing this for me.

So after much thought, research and more than one extensive conversation with my surgeon, I am getting breast implants. There are only a few options to add volume back into the breasts, flap surgery where fat is taken from the stomach and put into the breasts, or implants. My surgeon recommended implants as it is a much simpler surgery for me to heal from, where the flap surgery is very involved and painful. I trust my surgeon without a doubt and I know that he would not do this surgery unless he was absolutely sure that it is safe and my best option. Yes, he wants me to be happy, but he is a very responsible surgeon who actually cares about his patients and not making more money.

Getting breast implants is something that had never, ever, crossed my mind before breast cancer, but I do not think the same way now about myself or the world as I did before cancer….as I said before, fighting cancer forever changes you inside and out.

Dermatologist Appointment

Mood: Excited 😄

I think I mentioned a while ago that I found a dermatologist that can not only remove my radiation tattoos, but he does it for free for cancer patients. Today I went in to Atlanta to see him and have my first laser session. He immediately knew who I was when he came into the room because he held out both hands to greet me and said that it is a pleasure to be able to do this for me. He understood why I wanted the dots removed and understood about me not wanting a reminder of what I have been through with breast cancer.

I have never had a laser treatment before so I wasn’t sure of what to expect. The doctor let my husband stay in the room so that was nice for me. We were both handed glasses to protect our eyes and then he went to one machine and lasered my 3 tattoos, and then to a second machine with a different type of laser. It felt like little electric shocks and it did hurt, but not terribly. His assistant had a tube in her hand that blew cold air on me while he used the lasers so that helped a bit with the pain. My husband said he could see little specks of color lifting out from my skin….very trippy.

The areas that were treated are so small that I really don’t have any aftercare. They told me that the top skin that was lasered will scab and peel off. Once the scab is gone I will be able to see how much of the ink is gone and the doctor suspected that I will need at least one or two more treatments to have acceptable results.

I won’t go back until a month from now because the treatments, at least for me, need to be a month apart. Once I have my final results I will post some before and after pictures.