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! 🙂

My 5th Surgery: Revision of My Reconstruction Surgery **WARNING: GRAPHIC PHOTOS**

In a previous blog post, I wrote about my follow-up appointment with my surgeon on February 22nd. During that appointment, we agreed it was time to remove the lump under my left arm that has been bothering me for over a year. We scheduled my surgery, and I started to prepare for it. By prepare, I mean following the pre-op instructions that I am given, such as making sure I stop taking certain medications a few days before surgery.

My surgery was on Thursday, March 4th, at 9:00 am at the surgery center. This time I had to go to a hospital-associated clinic and get a rapid Covid test the day before surgery. I didn’t have to pay for the test, so that was a relief because I still do not have medical insurance, and I will have to pay the surgery center fee, my surgeon, and the anesthesiologist directly out of my pocket.

Just like my surgery in April 2020, my husband had to drop me off at the front door of the building. He wasn’t allowed to go up to the surgery center with me and sit with me until I went into surgery due to Covid, but he can come to see me once I am awake in post-op. Once my surgery was over, my surgeon called my husband and let him know that everything went well and that the post-op nurse would call him once I was awake.

I went through all of the pre-op steps with my nurses, such as changing my clothes, getting an EKG, checking my blood sugar, hooking up my catheter, signing paperwork, etc… My surgeon came by to take a look at the area he was removing and to mark a few spots as a guide for himself. He asked me if I had any questions; I didn’t as I am sadly getting used to this process, so he said he would see me soon and left. A few minutes later, my anesthesiologist stopped by to check on me and ask me a few questions. He grabbed a stool and sat right beside me, facing me, as he spoke with me. Little details like what he did just to talk with me is why I prefer to have my surgeries at the surgery center versus the hospital. At the surgery center, I do not doubt that I am getting the best care, one on one, which reassures me that I am being cared for by people who love what they do and want only the best for their patients.

Before I went to the OR for my surgery, I went to the restroom one last time. I know it probably sounds silly, but I always worry that I will pee during surgery accidentally, so I make sure to take care of that just in case. I have never asked anyone if it is even possible to do that, but I guess it is a superstition of mine as I have done it right before all of my now five surgeries. Anyway, when I came out of the restroom, I had two nurses waiting for me, and one of them said, “We are going to walk you straight to the operating room from here.” I laughed and said, “What, I don’t get a ride this time?” They explained that since I was already up and mobile from my bed, I may as well walk directly into the OR. It is a short distance as well, so why not walk in? I told them that I like walking into the OR better because I don’t have to perform the awkward maneuver of moving from my bed to the OR table.

This surgery was much shorter than my previous surgeries, being only about 30 minutes long. The last thing I remember is one of the anesthesiologists; I had two of them this time because one of them was shadowing, commenting on the smell of the mask he put over my mouth and nose; we agreed that it smelled like a new plastic beach ball, and then I was asleep. By the way, I have never had anyone ask me to count backward as I am falling asleep; almost all of the anesthesiologists I have had have told me to think of somewhere else I would rather be at that particular moment.

Everything went well with my surgery, and before I knew it, literally…hahaha, one of my post-op nurses was welcoming me back and asking if I wanted something to drink and what kind of crackers I wanted. When I had surgery at the hospital, they never gave me a choice; I had water and saltines, but the surgery center is different and better in so many ways, including giving me a choice of what I wanted. I sipped my water and ate a peanut butter cracker as I woke up a bit more and waited for my husband to arrive. As usual, I was nauseous, so the nurse gave me some medicine in my IV. I did have the anti-nausea patch behind my ear, but it wasn’t working; it rarely works on me for some reason; I am not sure why.

I will update you about my recovery in a few days and how my follow-up appointment went with my surgeon, which is scheduled for Wednesday afternoon.

Prepped for surgery!

Getting Back To Me

Cancer takes so much away from both patients and caregivers. A little over a month after my diagnosis, I had the first major surgery I have ever had in my life, and during that surgery, cancer took a portion of my left breast away from me. Once I started chemotherapy, little by little, the drugs and cancer began to take even more from me. Cancer took all of my hair, some of my toenails, it dried out my skin, it aged my face and body, it took my confidence, energy, health, and my overall well-being both mentally and physically.

When I heard from other cancer patients that it could take a year to two years to recover from fighting cancer, I didn’t believe them. Before cancer, I always thought that I was strong and doing reasonably well health-wise, other than having type two diabetes. I lost over 100 pounds a few years ago, and I had even discovered in October of 2018 that I was starting to enjoy running.

I am often asked if I had any signs that I had cancer before I found the first tumor during a self-exam in February 2019. Looking back, I did have symptoms, but I didn’t know it at the time. About one week before Christmas in 2018, I started a run, and five minutes in, I was out of breath and extremely fatigued. I was bothered that I couldn’t continue, but I just assumed that I was coming down with a bug or something, so I wrote it off and promised myself that I would get back to running as soon as I felt the energy to do so. When my husband and I went home to see my Dad for Christmas, I noticed that I felt even more exhausted than I had a few weeks earlier. It seemed like no matter how much sleep I got, it wasn’t enough, and the simplest task wore me out. Then a few weeks into January 2019, I woke up one day with my left shoulder blade, my shoulder, and the left side of my neck hurting. I thought that I had slept funny on that side and that it would work itself out in a few days; it didn’t stop hurting until I had my first surgery when all of the tumors were removed.

As I sit here two years after my breast cancer diagnosis, I am beyond thankful for so many things. Recently, I am most thankful for the fatigue I have been suffering from for so long, finally subsiding and helping me get back to me. I never really knew what real fatigue felt like until I had aggressive cancer and had to go through a rigorous schedule of scans, blood draws, surgeries, chemotherapy, and radiation treatments to save my life. But now, I am getting back to a regular schedule when it comes to working out, and with each workout, I feel better and better. Last night I ran 1.50 miles in 20 minutes, not bad for someone who has been through so much and hasn’t gone on a run in over 25 months! I am proud of myself and I am really enjoying working out again.

I am getting back to me, day by day…. 😁

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.