Nothing Can Truly Prepare You for Chemo Hair Loss…

Chemo hair loss shaved head October 26 2016
October 26, 2016

Dealing with a Breast Cancer diagnosis is hard. But even harder is dealing with all the side effects that come with Cancer treatment. While the side effects are not fun, the hardest one to face is chemo hair loss.

My Stage III, triple positive, HER2+ Breast Cancer diagnosis came in September of 2016. The days that followed my Breast Cancer diagnosis pretty much went by in a blur. Countless tests to determine how far cancer had spread. And more tests to get a baseline to see how the tumor would respond to the treatments that were to come.

While cancer had spread to my lymph nodes, luckily it had not gone any further. You can read more about my diagnosis in my earlier post, You Have Breast Cancer.

I started my six rounds of TCHP chemo on October 11, 2016. The day after my Power Port was installed. Cancer treatment hair loss is quite common. You know it will happen, and you do your best to prepare yourself for it. But when it finally happens, you suddenly realize that all the knowledge in the world will never truly prepare you for the feelings associated with chemo hair loss.

After speaking with previous Breast Cancer survivors, as well as doing my own research, I thought my hair loss would start to occur after my second treatment. And my second round of chemo treatment was scheduled for November 1, 2016. Needless to say, the chemo hair loss fairies had other ideas.

With just one round of chemotherapy behind me, the treatment side effects began to kick in. There was the fatigue that was unlike I had ever experienced. A dry mouth, and a sense of taste that was so far off, it made it very difficult to find something that was appetizing to eat.

Many said that I could expect my hair to start thinning after the first round of chemo, but what I experienced was beyond just normal hair thinning. The chemo hair loss became noticeable during my morning routine of straightening my hair before work. Combing it resulted in more strands on the counter and the floor, but, by far the worst was when it came to washing my hair. The change felt like it happened overnight. My chemo hair loss went from a few strands falling out to large clumps getting stuck in my hands. Words cannot even express the pain and emotions that I went through in dealing with chemo hair loss.

I held out for as long as I could, but the chemo hair loss forced my hand on October 26, 2016. I didn’t want to lose my hair, to lose a part of my identity, and bald. Forced to have to wear an itchy wig for who knows how long. But I also didn’t want to go into work feeling like there were huge clumps missing in my scalp.

Apparently, my feelings regarding my chemo hair loss were more psychological than actual. Although my husband did say that it was noticeably thinning. Even just running my fingers through it caused strands to fall out and everywhere. My mom had had the idea to take me wig shopping long before I started my Breast Cancer Treatments. While everyone at work knew about my diagnosis, and I had my wig ready to go, I still was not ready to admit to myself that worst was yet to come.

Your hair is part of your identity, that which makes you, you. Chemo hair loss takes away the control you have over your identity, which is why I tried my best to hold off on using my wig for as long as possibly could. I was not ready for this stage in my Cancer journey, but I had to find some strength deep inside me to take control of the situation. After many tears, I made the tough decision to have my husband shave off what remained of my hair.

Post Chemo hair loss August 12 2017
August 12, 2017

I was an utter mess during the whole process, but he was the rock and support I so desperately needed. Of course, he made some references to Sinéad O’Connor, which of course made me laugh in the middle of all my tears.

Shaving my head was hard, but the second hardest step in the chemo hair loss process still lay ahead. How would I be perceived at work? Would I get strange looks from people I barely knew? How would my co-workers treat me with my new “hair”?

I felt so self-conscious, so not myself, as I no longer had my own hair.  Instead, I had to hide my nearly bald head under this wig that made me feel like an alien inside my own body. Luckily everyone at work was very kind. I received many compliments on my new do, from people I only saw in passing. Not knowing what to say, I I quietly smiled and said “Thanks.” Because how do you explain to someone that you barely know, and only see in passing, that your new haircut is not real?

While the wig made me look normal, it was the most uncomfortable thing in the world. My wig was breathable, yet every hour the wig spent on my head felt like torture. I could not wait to get home to take the thing off my head. It was itchy and made the hot flashes from the chemically induced menopause 100 times worse. I spent the rest of my time dealing with chemo hair loss by wearing fabric caps. Depending on the weather, I either put a baseball cap over it or my newly acquired Boston Red Sox winter hat.

The months passed and with it my six round of chemotherapy. The worst of my treatments were over and with it my chemo hair loss. My hair was slowly starting to return, and I had grown so tired of the wig that I couldn’t wait till my hair was long enough so I could say goodbye to it once and for all. But in my mind, I was self-conscious. I feared my post-chemo hair loss look would not be met with a positive response.

The internal nervousness of my post-chemo hair loss was so bad that I posted a picture to my personal Facebook page in May regarding my lack of hair. Luckily I received nothing but positive responses from my friends. Their support helped me put my fears aside, and while I was still nervous, I went to work on May 23, 2017, for the very first time without my wig, and now the rest is history.

The photo above, taken on August 12, 2017, shows that my hair is coming in quite nicely. Of course, it’s still growing way too slow for my taste. It’s better than nothing at all and is proof that I am moving forward towards being normal once again. Whatever my new normal may be.

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You Have Breast Cancer – Dealing with a Breast Cancer Diagnosis

Pink Breast Cancer RibbonWhy is it that a few simple words can seem to change your life forever? At only 37 years old, dealing with a Breast Cancer diagnosis is the last thing on your mind.

Background:

Long before I found myself dealing with a Breast Cancer diagnosis, I had a lump in my right breast for about a year. It appeared in August 2015, during a stressful time in my life. In the spring of 2015, we learned that my dad had Metastatic Pancreatic Cancer. Metastatic means the disease had spread to other parts of the body. Leaving it untreatable by conventional forms of Cancer treatment. He had received a Parkinson’s Disease diagnosis many years before, so the addition of metastatic cancer led to the only logical decision. He chose to enter hospice care, and spend whatever remaining time he had left in the comforts of home.

2015 went by in a blur. My husband and I spent every weekend we could at my parent’s house, helping them out in whatever way we could. A 40-hour workweek combined with our always on the go weekends took a toll on me both physically and mentally. I barely slept, and it was painful to watch my father slowly wasted away. Not because of cancer, but the fact that the Parkinson’s was beginning to take its toll. At the end my dad could no longer swallow, so he eventually starved to death. We lost my dad in October 2015.

My Symptoms:

Towards the end of my dad’s life, in August 2015, I had a lump appear in my right breast. It appeared pretty much out of nowhere. This lump was not something that slowly grew in size like you would expect. It appeared, in what felt like, overnight, and remained the same size for an entire year. We all have learned the “traditional” symptoms of Breast Cancer, and this lump did not fit any of those criteria. It was movable, and it would consistently cause throbbing, stabbing pains, so the last thing on my mind was the thought of having to deal with a breast cancer diagnosis. I believed it had to be benign as it did not fit any of the symptoms of Breast Cancer.

My dad was the primary concern at this point, so dealing with this lump was the last thing on my mind. It appeared to go through cyclical changes throughout the month, which lessened my concerns that it could be anything but a benign cyst. This lump never got any larger, and it always remained movable, until the Fall of 2016. Suddenly it started to protrude in ways it hadn’t before. I had a firm lumpiness under the nipple that was quite obvious as I lay in bed at night trying to fall asleep. These sudden changes scared me. Not knowing if it was good or bad. Scared that I might face a future where I would be dealing with a breast cancer diagnosis. Instead I kept telling myself it had to be benign, otherwise, it would have already killed me, right?

During this time I was also dealing with a plethora of other health concerns, which caused me to finally seek the assistance of a Naturopath. For years, I dealt with a variety of issues, ranging from Migraine auras to brain fog, and joint pain, just to name a few. After doing a lot of reading, research, and dietary trial and error, it seemed gluten was the culprit. Figuring I had nothing to lose, I removed all gluten from my diet, including all topical products. It had been well over a year since I embarked on a Gluten Free diet, and while I was feeling better, I still was not back to normal. I knew I wasn’t unintentionally poisoning myself, which left me feeling frustrated and unsure what to do.

One appointment, and one test later, my Naturopath determined that I had Adrenal Fatigue. My cortisol levels were low in the morning, peaked around noon, then crashed in the early evening. These results explained my low energy levels in the early morning and late in the day. As we determined a course of action to treat my Adrenal Fatigue, I also requested she check my lump. I knew I had to have it looked at sooner or later. A mix of emotions washed over me as she took me into one of the exam rooms. I kept telling myself that it was benign, and her prognosis would validate what I had been assuming it was for so long.

Mammogram at 37:

Needless to say, the look on her face, as well as her response, left me feeling anything but comforted. She was “highly concerned”, a comment I would hear countless times throughout my journey, that it was something other than a benign lump. As I lay there on the table, tears began to roll down my face, as there was no possible way that this could be cancer. I thought I was done with Cancer. Instead, I sat there facing the possibility of having to deal with a breast cancer diagnosis.

She was so concerned that she scheduled me for a mammogram and ultrasound the same say before I even left her office. As she worked on scheduling my tests, she popped in an out of the exam room to check on me. I cried as my hopes for a benign lump had vanished. Hell, I mean who wouldn’t be when faced with the possibility of a Breast Cancer Diagnosis? She mentioned that I should call my husband and see if he could go with me for the tests, for some moral support during a very scary time.

One minute I was thinking it was nothing more than a fibrocystic cyst that would fade on its own once I hit menopause, instead I was getting my first mammogram at the age of 37. As I sat in the waiting area for my test, scared, and alone, because my husband could not come into the testing waiting area with me, I fought back the tears as I the potential of dealing with a Breast Cancer diagnosis ran through my head.

They squished my breasts for the mammogram, which hurt like hell, and then took me into another room to complete the ultrasound. With that test completed, I laid in wait. Waiting for the radiologist to come and discuss the results. While holding onto hope that it couldn’t be Cancer. After what felt like forever, the radiologist finally entered the room. My husband and I both tried to get some form of information out of him. “Yep, that’s a palpable lump” was his only reply. They couldn’t tell me any more than I already knew. Yep, I have a lump in my breast that can be felt. Gee thanks, Captain Obvious!!

Tests, Tests, and more Tests:

My Naturopath called that night to follow up, partially to check in on me and make sure I was doing OK and to let me know that she was working on getting me in to see a Breast surgeon ASAP. I kept asking questions, but the only response I kept hearing was that she was “highly concerned.”

The weeks that followed went by in a blur. I had my first appointment with the breast surgeon. They asked us to pick up the imaging disk from my mammogram and bring it with us. I had my husband pick the disk up on his way home from work. He left work earlier than I did, and was closer to the hospital where the imaging was done.

When I got home from work, I found out that he had tried to look at the image, but never got that far before the tears started. Long story short, the dictation included on the disk perceived it to be Breast Cancer that had invaded the lymph nodes. He told me about this when I got home from work that night, bringing me to tears. I could not possibly have Breast Cancer, and I still held out hope until the very end that I would not be dealing with a Breast Cancer diagnosis. My travels across the internet had taught me that there were benign conditions that looked like Cancer on imaging, and the doctors only had the images to base their prognosis on.

I met with the breast surgeon, and she looked at the lump and reiterated the same thing I had been hearing all along. She was “highly concerned” and we wouldn’t know for sure what we were dealing with, without a needle biopsy. Yet another frustrating appointment, leaving me knowing nothing more then I did going in. I still held out hope that it could not possibly be cancer, even though everyone else in the world seemed to think otherwise.

An ultrasound-guided biopsy was ordered. It was the only way to truly know what we were dealing with. My lymph nodes were enlarged, but still small enough that they could not be felt by hand alone. And the test was to be performed on the lymph nodes as well as the lump. As I lay on the table during the biopsy, I tried to get a feel from the doctor as to what exactly she was getting out of the lump. What did it look like? The response, “It looks like cells.” Again, I left this appointment frustrated and anxious, while still holding onto the fact that I would not be dealing with a breast cancer diagnosis in my future. I was apparently the only one who thought this way because everyone else seemed to think otherwise.

Breast Cancer Diagnosis:

It was on September 13th, 2016, that my life changed forever. This was the day I had the followup appointment with my breast surgeon. It was the day I would learn the results of the biopsy. The day where facing having to deal with a Breast Cancer diagnosis would become a reality. As I sat in the exam room with my husband, I still held out hope that it was benign, and I would leave that appointment being able to resume some form of a normal life.

I remember saying to the surgeon when she first entered the room, “I hope you have good news for me,” but the look on her face and the first words out of her mouth said it all. “You have Breast Cancer.” My heart sank. She examined the lump once more, then stepped out so I could get dressed. It was at that point that the tears began to fall. I could not possibly have breast cancer. The thought of dealing with a breast cancer diagnosis made me feel like I was stuck in a bad dream. One I was sure I would wake up from at any minute.

When she returned, she reviewed the biopsy results, and there is very little that I can say that actually sunk in beyond ER+, PR+. There was still one test that was outstanding, the HER2 test, which is what determines the aggressiveness of the tumor.  I left that appointment with paperwork and my first of many pink ribbon pins. It felt surreal, as there was no way I could be dealing with a breast cancer diagnosis at only 37 years old.

Next on the list was a Breast MRI, CAT scan, and bone scan, all to determine whether cancer had spread past the breast and lymph nodes. A Breast Cancer diagnosis also meant I would be referred to an oncologist. Yep, that is the one doctor I never had expected or wanted to have on my list.

Oncology:

Time is of the essence with Breast Cancer. In what felt like the blink of an eye, I was scheduled to meet with my oncologist for the first time. Yet another appointment that went by in a blur. I left that office feeling like I knew nothing more than when I walked in. I was lucky enough to have the company of my husband, mom, and a close family friend at my first appointment. They were able to digest more of the information my oncologist provided. And later advised me of what I needed to be concerned with. In the midst of all this, the HER2 test came back positive as well. So beyond just dealing with a breast cancer diagnosis, I was dealing with an aggressive form as well.

On a positive note, the bone scan had come back negative, meaning cancer had not spread to my bones. The CAT scan was mostly negative, except for a spot on my liver. The doctors were 99% sure was benign, but needed additional tests to make sure. Two more MRIs were ordered. One of my brain, and one of my liver to make sure cancer had not spread to either location. Apparently the brain and liver are the two most common areas for Breast Cancer to spread to.

Both MRI tests came back negative. Stage III ER+, PR+, HER2+ Breast Cancer was my official diagnosis. Next up was to finalize a treatment plan to attack the Cancer. Herceptin and Prejeta were prescribed as targeted HER2 chemotherapy medications. Docetaxel and Carboplatin were added in as the general cancer killers. Shorthand for my chemotherapy treatment plan was TCHP. I was scared to death. My Breast Cancer diagnosis had to be a bad dream. One I would wake up from at any moment.

Breast Cancer is quite common, and it has a high survival rate. But it’s hard not be scared when you’re faced with dealing with a breast cancer diagnosis. Particularly with so many unknowns. How will I respond to treatment? Will I have negative side effects? Without realizing it, anxiety takes hold, and you find yourself fearing the worst. Especially when they review all the potential side effects of the medications you will be given. Although most are rare, it’s still enough to kick your anxiety into high gear.

As the start of my cancer treatment crept closer, the appointments I feared the most was creeping up on me. A short, outpatient surgery visit was all that was needed to place the port in my chest. This was a little bucket like device, placed under the skin. It would be used to administer my chemo treatments. In my entire life, I had never been through any type of surgery. Dealing with a Breast Cancer diagnosis brought a lot of firsts. This included all the tests I had been through in the past month. All of which did not help my anxiety levels.

The port surgery had been scheduled for October 10th, 2016. Followed immediately by my first round of chemotherapy, scheduled for the following day. I wasn’t sure which I feared the most, the surgery, or the chemo itself. I have to say it was a tie as they both had their own anxiety-inducing unknowns.

Surgery & Chemotherapy:

Luckily the port installation surgery went without a hitch. It was same day surgery. The only issue was an allergic reaction to the Chloraprep used to clean my skin. They closed the incisions with medical super glue, which I referred to as blue goo. And bandages placed over those areas as an added level of protection. They sent me home with pain medication, and guidance to not remove the bandages for 24hrs.

In preparation for my first chemotherapy treatment, I had to take the bandage off that was covering the port. The nurses would be inserting a needle into the port to administer my IV chemo. In order to minimize any pain felt during this process, lidocaine applied to numb the area. The bandage over the second incision was the only one that remained. It protected the incision used to insert the hose into my vein. I removed it later that night.

Despite my nerves, my first round of chemo went fine. It wasn’t until a few days after my treatment, that an itchy rash appeared. The rash was the exact shape as the bandages that had been on my skin. I took Benadryl religiously for weeks before I was finally able to get the itchy rash under control. In my entire 37 years of life, I had never gone through surgery. So I learned the hard way that I was allergic to Chloraprep. Luckily it was not a life-threatening allergy. They only used Betadine on my skin from that point forward.

Oncology scheduled me for six rounds of TCHP chemotherapy. With my treatments once every three weeks. With every round I went through, the side effects that I dealt with seemed to get worse and worse. There was fatigue that was unlike anything I have ever experienced. A facial rash that looks like acne, but much more painful, muscle fatigue, hair loss, and even fingernail separation.

I did my best to stay strong when it came to dealing with a breast cancer diagnosis. By focusing on taking things one day at a time. Being strong and positive all the time was hard. There were days where I hated what my treatments were doing to my body. I just wanted the entire process over with so life could return to normal. Of course, genetic testing was the remaining unknown in dealing with a breast cancer diagnosis.

Genetic Testing:

When you think of Breast Cancer and genetics, the first thought that commonly comes to mind are the BRCA genes. The ones made famous by Angelina Joli, but there is much to genetic testing than just those two. It took approximately a month for the gene test results to come back. We wanted the results as soon as possible, so the nurse drew my blood, prior to the final round of chemo on Jan 25th, 2017. We received the genetic testing results not long after. In addition to dealing with a breast cancer diagnosis, I had tested positive for the ATM gene. I was also indeterminate for two others, one being BRCA2 and the other CHEK2. That means not enough clinical documentation existed to determine whether these results were positive or negative.

Needless to say, the gene testing results meant I had to make the tough decision to have a double mastectomy. Being ATM positive puts you at a high risk for Breast Cancer. That meant, it was not a matter of if, but, when Breast Cancer would appear in the other breast. I didn’t want to go through dealing with a breast cancer diagnosis for the second time.

Conclusion:

I know this was a long post, and I’m sorry about that. There isn’t a cliff notes way to summarize everything I have gone through in dealing with a Breast Cancer diagnosis. I will do my best to keep you all updated on how things are going as I feel able to. Dealing with a Breast Cancer diagnosis is scary. And if my post helps just one person feel like they’re not alone, then I have done my job. Breast cancer is scary and no one ever wants to feel like they are facing it alone.

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