Appointment With My Oncologist & A Big Milestone

When I had my appointment with my oncologist on August 5th, I was hoping that my red blood cell count would finally be in the normal range, but it isn’t quite there yet. I wasn’t too surprised as I have been tired lately and not feeling the greatest. At this point, nothing but time will help, so I am trying to be patient.

I am still having a lot of issues with my memory. It seems like only my short-term memory is being affected, but it is starting to drive me crazy. My oncologist asked me if I am still “fuzzy,” and I said that yes, I am still having issues. So, I am taking a week off Anastrozole to see if it helps clear my head or not.

The good news is that I have reached my first significant milestone! On May 23rd, one day after our 17th wedding anniversary, I made it to my second anniversary of being cancer-free! I am incredibly grateful that I have made it through the first two years, and I am hopeful that I will continue to stay healthy and cancer-free until my next milestone in another three years, at five years.

Once I have my next appointment in December, I will finally be on a different schedule with my oncologist. I will switch from seeing him every three or four months to every six months. I am making progress, and it feels good!

Long Break

Hi, I can’t believe that we are already in July and that it has been over three months since I published a post here! In my defense, I can tell you that I have had a lot going on since the middle of April.

In early May, I started looking for a house to move to because with the housing market going crazy, I was sure that the owner of the house we had been renting for the last six years would want to sell. About a week later, my suspicions were confirmed by a phone call from the owner. Finding a house was challenging because the home would be listed online, and not even 24 hours later, there were multiple applications on it. Right before we were due to leave on vacation, we went to see a house, and it was perfect! At first, we didn’t know if we had gotten it, but right before we flew out of town, we received the news that we had been approved and would get the keys on June 1st after we returned from vacation. So, my time was filled with stress from looking for a house and then getting ready to go on vacation, but it was worth it because we have moved into a house that is perfect for us and our vacation was wonderful!

While on vacation, we renewed our wedding vows on our 17th anniversary, and everything was perfect on our special day! Ocho Rios, Jamaica, is one of our favorite places to relax and reconnect with each other, so why not renew our vows while there. We were supposed to renew our vows two years ago, but between my breast cancer diagnosis and treatment in 2019 and Covid causing the world to stop in 2020, we had to post phone our trip and ceremony until this year.

I will update you with everything that has been going on over a few different posts in the coming days, which will include a huge milestone, a follow-up appointment with my surgeon, and how I am doing these days.

I will be back soon! 🙂

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.

9 Things You May Not Have Heard from Your Doctor About Breast Cancer

I can relate to quite a few of the issues described below. I appreciate this article because it reminds me that the way I have been feeling recently is very common for cancer patients. I need to continue to give myself time to continue to heal both physically and emotionally.

Medically reviewed by Michelle Azu, M.D. — Written by Anna Crollman on September 24, 2020

It can be difficult for others to understand what you’re feeling without going through it themselves.

When it comes to breast cancer, your medical team can provide you with a wealth of expert medical advice.

But when it comes to the actual experience — how to manage the side effects and long-term insight on your options — some insight may be better understood by talking to other women who have walked the breast cancer path before you.

1. Fertility treatment options are best explored before you begin chemo

Many times, this step can be overlooked in the process of expediting your treatment.

However, discussing fertility preservation options before beginning any chemotherapy — which could impact long-term fertility — is important.

2. When your hair falls out, it could be painful

As the follicles die, there can be a painful and tender sensation on the scalp.

Many survivors will recommend you shave your head with a close razor as soon as this sensation begins in order to minimize the discomfort.

It’s always important to talk to your treatment team about unfamiliar side effects you’re experiencing to know if they’re expected parts of the treatment.

3. You may experience significant weight gain from the steroids

Many people associate weight loss with chemotherapy, but some women have the opposite experience and actually gain weight. Either can be challenging, both physically and emotionally.

4. Medication can affect your sex drive

Lupron and other hormone-blocking medications can cause vaginal dryness and painful intercourse, as well as decrease your sex drive.

You’re not alone in these challenges.

There are treatment options, and the sooner you intervene, the better. Don’t be embarrassed to ask about your options in terms of topical lidocaine, dilators, and daily moisturizing.

If your oncology team cannot advise you further in this area, they should be able to refer you to a health practitioner who can. Your gynecologist may also be a good choice for discussing your concerns.

5. You have options when it comes to breast reconstruction

Don’t be afraid to get a second or third opinion. Most surgeons offer or recommend the surgery types they’re most familiar with.

They won’t be offended by you getting another opinion, and it will help you come to a decision as a more informed and empowered patient — which is critically important.

6. Your implants may be cold to the touch

This is a rare and unexpected experience that occurs in some women who’ve had implants, and it can be helpful to be prepared for this ahead of time.

Regardless, it’s important to inform your surgical team so they can ensure there are no concerns related to your healing.

7. Complementary treatments help to manage side effects

More and more, oncologists are recognizing the benefits of holistic and complementary therapies, such as massage, acupuncture, and more.

Ask your local cancer support centers or organizations for referrals. Some centers have an integrative oncology program where these services are offered by a team that can communicate with your cancer treatment team.

8. Life after cancer can be harder emotionally than active treatment

When all the appointments are done and you’re not being monitored regularly, it can be unsettling.

Sometimes it can feel even harder if those around you are ready to celebrate and “move on,” and you’re not.

Don’t be afraid if you find yourself struggling to cope. You’re not alone in these feelings and it’s a good idea to reach out to your treatment team about support services, which may include a mental health professional.

9. Reconstruction is a journey

Not everyone feels comfortable with their outcome after reconstructive surgery. For many, the first surgery is the first phase of a two-step process, or more in some cases if needed.

In my case, it has been 5 surgeries over 4 years, and I’m planning to do more revisions this year.

If you’re dissatisfied, give yourself time to adjust to the changes and then don’t be afraid to ask what revision options are available.

The bottom line

The first-hand experience you will gain by connecting with other breast cancer patients and survivors can help you feel less alone and help you navigate your own cancer journey with support.

Find other cancer survivors with similar stories in the BC Healthline app, the Young Survival Coalition groups, and even through hashtags on social media, such as #breastcancersurvivor#youngbreastcancersurivor, and #doublemastectomy.

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.