Let's Get This Party Started

The two weeks leading up to my first cycle of chemotherapy were quite busy.  I met with my surgical oncologist, had a bone scan, took out my intrauterine device (IUD), had an echocardiogram, cut my hair and established care with an oncology dietician.  

I consumed all the information they shared with me as well as started down the research rabbit hole to ensure that everything that I was doing was evidence-based and current best practice.

I wasn’t just going to kick cancer’s ass, I was going to KICK CANCER’S ASS!!!

My surgical oncologist discussed what my options were after my 6 cycles of chemotherapy to shrink the tumor.

Given the size of my tumor on my left breast, a mastectomy was really the only true option.

“How about my right breast?” I asked.

“My symptoms have been bilateral.  I know the MRI only showed cancer in my left but because I have dense breast tissue, aren’t I at an increased risk for it coming back in my right?” I added, knowing what the literature said as a result of  my late night research parties.

My surgical oncologist shared, “That’s a possibility but doing so doesn’t increase your chance of survival.”  

“I don’t just want to survive, I want to thrive.  I don’t want to go through this again.  I have my babies to take care of and watch grow up.  Too many plans to get cancer again!” I thought in my head. 

“Okay, what about if my genetics results come back and show that I have the BRCA gene?” I followed up.

“Yes.  We will see what your results are after you have completed genetic testing.” she said.

The surgical oncologist also added, “I am going to try and see if we can biopsy your left axillary node that seems suspicious.”

“They wanted to biopsy it when I had my breast ones done, but said it was too close to vascularature to attempt it at the clinic I was at.” I shared.

“I think we can get it here.” She said confidently.

Slowly, the plan was starting to come together.  As the picture of my fight became clearer, my anxiety settled a little.  

While my anxiety never went away completely,it stopped bubbling and overflowing like it did during the initial days.

I am happy to report my bone scan was uneventful, no sign of metastatic spread!

“Oh thank God!! It's still JUST BREAST CANCER!” I thought while reading the report.

My breast friend Amy  told me that her medical oncologist told her that “a hormone based intrauterine device (IUD) needed to be removed since it’s contraindicated when you have hormone based breast cancer.” 

As a result of this information, I talked with my healthcare team who stated, “Yeah, that would be a good idea to have it removed.”

In between my bone scan appointments, I also had my intrauterine device (IUD) removed since it was hormone based.

“Thank you Amy!” I thought as I drove away after its removal.

“No sense in feeding my breast cancer more hormones to grow!” I added.

On the Friday before my first chemotherapy, I had an echocardiogram (echo) that was done to ensure that my heart was healthy enough to start chemotherapy.

Some of the chemotherapy drugs are known to cause inflammation around the heart and weaken it a bit.

An echocardiogram is also done before starting chemotherapy to establish a baseline and to have something to compare it to on subsequent exams.

My heart is strong and healthy going into my first chemotherapy.  

“Phew, some more things that are going in the right direction for me!!” I thought as I devoured yet another report.

I will have another echo done in about three months to make sure the chemotherapy drugs aren’t damaging my heart.

The technician who completed my exam was great, warm and sympathetic.  Eased my nerves instantly.  

I’ve come to really value and appreciate the providers that are good at their job and show up.  

Okay, two last pieces before getting into the chemotherapy experience.  Of course, they are additional examples of how my breast friend Amy who came into my life to brightened the dark path that is breast cancer for me.  

During our initial conversations, Amy shared with me the most beautiful story.  

She had long dark, black hair.  I saw pictures, it was gorgeous.  

She knew that she was going to lose it due to the chemotherapy regimen she was on. 

She decided she was going to turn a sad situation into a positive one.  She cut her hair and donated it before starting chemo.  

I cried when I heard her tell the story, “That is the most beautiful gift.” I told her.

I attempted to be like Amy and donate my hair but it was a few inches too short.

I had it cut anyway as a transition style before my hair started to fall out.  

“Maybe, this way it won’t be such a shock when I am bald?” I hoped when I looked at myself in the mirror not really loving it.  

Amy also shared with me that she paid out of pocket to have a dietician who specializes in oncology.

“Someone who studies nutrition and diet as it relates to cancer, this is exactly what I need!” I thought as I listened to Amy.

So, on that Friday, before chemo in addition to getting my haircut and an echo, I met with an oncology dietician.

I had already started a plant-based diet the day after Christmas, as I concluded after much research that it would be the best lifestyle change for me in starving the cancer and decreasing my future risk for recurrence.  

My dietician reviewed with me my diet and made some recommended changes.

She also advised me on a fasting protocol prior to chemotherapy as well as cryotherapy during chemotherapy.  

Several pieces of evidence based research articles were sent for me to review and learn about their effectiveness.  

I will talk a little more here shortly about my experience with fasting but I want to stress to you, the reader, to make sure you notify your physician or oncologist that you are fasting or would like to fast as well as be followed by an oncology dietician to ensure safety and that you are doing it correctly.  

Now onto my Chemotherapy Cycle 1 experience…

Since my first chemotherapy session was set for Monday, I needed to start fasting on Saturday.  

I stocked up on bottled water and vegetable broth.  I had my last cup of coffee Saturday morning and savored every last drop.

I opted to fast for 36 hours before my first chemo, so I could have breakfast and lunch on Saturday. 

I didn’t know what to expect or if I would be able to complete the fast in its entirety.

Amy shared with me that the first 24 hours are the hardest, after that it would get a little easier.

“Remember what Amy said, I just need to get through the first 24 hours,” I would repeat over and over in my head while my stomach was growling.

“Take another sip of water, keep drinking.  Stay hydrated.” I would add.

I also chewed lots of gum, like 3 packs through the duration of my fasting!

As I would fall asleep, hungry, I would visualize the cancer cells starving.  I would imagine them shrinking and feeling hungrier than what I was experiencing. 

It would help me get past the hungry feeling, I would think “Die! Die! YOU unwelcomed invader!”

On Monday morning, I got dropped off at the hospital.  With Omicron blowing up in Wisconsin, I didn’t want to risk anyone in my family getting sick.

My parents and Tyler fought me saying, “Someone needs to be with you!  You can’t go alone!”

“Look,” I said, “I wouldn’t be able to live with myself if any of you contracted COVID because of me being in the hospital!”

“Besides, I like to process things on my own terms.  It will be good for me to be able to go ‘in’ to get through this.  It’s what I preferred during my miscarriage and when I was pregnant with Maya.  I do better this way.” I added reassuringly. 

My first stop would be to get labs to ensure I was healthy enough to do chemo as well as have an IV placed for the chemo to be administered for the first cycle.

It took them three attempts and they used an ultrasound device to actually find my veins.

“I have terrible veins,” I shared with the phlebotomist. 

“I can see that,” she responded.

“I blame my grandma, they are her veins.” I said with a chuckle as she was advancing the needle yet again.

After labs, I would wait. And wait. And wait some more.  I waited for over 2.5 hours before they called me back for my chemo.  

I was supposed to start at 8:30 AM and it wasn’t until 11:00 AM when I was roomed! It was shared with me that it was because they were waiting on my lab results.  

As determined by my medical oncologist, my chemo regimen would be 2 targeted HER2 drugs (Herceptin/Trastuzumab and Perjeta/Pertuzumab) and 2 systemic ones (Docetaxel/Taxotere and Carboplatin).

This regimen is often referred to as TCHP and is a common treatment for HER2 positive breast cancer.  

I shared with my nurse that I would like to use ice for before, during and after Taxotere and Carboplatin on my hands and feet to reduce peripheral neuropathy in those extremities.

She shared with me, “we don’t do cryotherapy here, it’s not a proven method.”

“WHAT?! ANOTHER ROADBLOCK IN THE ROAD?” I thought to myself.

“Do you have ice I can use during that time?” I asked her.

“Yes, we have ice here.” she responded.

During your first chemotherapy, it takes additional time as they administer the drugs one at a time and wait in between to check for a reaction.

I didn’t really feel too much as the HER2 drugs were administered.

However, emotionally I was as a little nervous since my bilirubin levels were a little elevated BEFORE starting chemo so my medical oncologist ordered some specific tests before allowing me to proceed with the more systemic chemo drugs, the ones I wanted to complete cryotherapy before, during and after with.  

“How can my bilirubin levels be elevated since I have been doing a plant-based diet and drinking plenty of fluids the past three weeks?” I wondered as I waited to see if my treatment would be altered.  

Ultimately, my medical oncologist gave us the green light to proceed with the systemic chemo drugs.  

However, no ice was provided for me to use to decrease my risks and symptoms of peripheral neuropathy, a common side effect of these drugs.  

After waiting for hours to start my chemo and again for the test results to confirm that I could proceed, I was tired.  I was too tired to fight the lack of ice issue. 

“NEVER AGAIN.” I thought “Never again will I not have ice for my treatments, I will bring my own and take control for next time.” I added, hoping that by not doing it for this first treatment would lead me to a lifetime of dealing with numbness and tingling in my hands and feet.  

However, there was a little light during my treatment…

My childhood best friend, Amanda, the one whom I would write letters to monthly and send via mail when I was only 8, the one whom I would spend summers watching her compete at the county fairs, the one whom I would tell all my secrets to and would heal my heart after break-ups with boys, the one whom would dance with me for hours at high school dances even if we were the only ones dancing, the one whom I would have weekly hot tub dates while watching Ally McBeal, the one who would study with and quiz me for hours to ensure a good grade…has been one of my biggest advocate and has put one of the most amazing people in my life, in my corner to fight this breast cancer…Dr. Anna. 

Not only is Amanda my childhood best friend, whom I shared sleepovers, dances, dates, secrets and heartaches with, she's also a kick-ass cardiac surgeon in central Wisconsin.  She has reached out to several colleagues from medical school who now practice in the field of oncology to get cutting edge advice for me.  AND she put Dr. Anna in my life.  Dr. Anna, is a former colleague of Amanda from a reputable hospital in central Wisconsin, and an active practicing surgeont with decades of experience.  

Dr. Anna facetimed me while I was receiving my chemo treatment.  She was asking me how I was doing, how my treatments were going and if I had any questions. She encouraged me to reach out to her at any time, with any questions or concerns and I know she meant it. 

“What? I can’t believe she is taking time out of her busy day to talk with me…someone who is not her patient!” I thought while she was putting my fears at bay.

And just like that, my load felt a little lighter.  My mind felt more at ease. The path was a little less dark.

My mom came into the hospital towards the end of my treatments to learn how to give me injections.

I would need to have injections starting on Day 2 post chemo for 8 days straight to help my body produce white blood cells to improve my immune system function.  

AND then I was on my way home, I didn’t eat until the following morning per the fasting protocol.

Lincoln and Maya had the house decorated with the most beautiful signs and drawings.   They ran to me as I entered the house and gave me the biggest hugs.

“This is why I am doing all this! I will go through hell and back for these two people, my favorite humans on the planet!” I reminded myself as I embraced my children.  

I didn't sleep much that first night. The steroid they had me take to prevent toxicity kept me awake as well as all the fluids I was drinking, which sent me to the bathroom.

It’s okay because I would need to leave early the next morning to have my axillary lymph node biopsied, the one they attempted to get December 16, 2021, but were unable due to too much vasculature surrounding it.

Unbeknownst to me, Tyler had ordered coffee from one of my favorite coffee shops, Ancora, for me to drink before I left for my appointment. HEAVEN in a cup! :) 

My aunt Kathy (well she’s really a 2nd cousin but to me she’s always been an aunt) arrived to drive me to my appointment.  

They were able to biopsy my axillary lymph node successfully without any complications.  The staff were all fantastic as well.  

Now, we just needed to wait a few days to hear what the results were.  

My mom came and picked me up to take me home.  I would not be home for long as I finally obtained a second opinion at another healthcare facility in Wisconsin.

How did I obtain this 2nd opinion you ask?  If you guessed Amy, you would be correct!

Amy suggested I call her assigned breast center and talk with their amazing nurse navigator.

The nurse navigator at her assigned breast center was able to get me an appointment and have me added to their system so they could have access to my records.

We were able to pay out of pocket for my 2nd opinion.  

My dad drove me to the appointment since Tyler’s January 13, 2022 work deadline was days away. It was crunch time for him.

The medical oncologist we saw for my 2nd opinion was phenomenal.  He knew my medical history and had extensively reviewed my reports and imaging with regards to my breast cancer diagnosis.

He asked me what I was doing for my nutrition and if I did cryotherapy during my treatment the previous day.  

I responded, “I am being followed by an oncology dietician and doing a plant-based diet. I was NOT able to do cryotherapy because my nurse yesterday told me that it wasn’t a proven treatment.”

He shared, “The plant-based diet is good for your type of cancer. I am really sorry that they did not provide you with ice but there is a lot of research that suggests cryotherapy is effective at reducing symptoms of peripheral neuropathy.  I would encourage you to bring your own ice for next time.”  

He confirmed that my treatment plan at my assigned breast center is what he would do.

“Phew, thank goodness.” I thought.

He also answered questions about my risk factors in getting COVID and what my options were if I did.

“If you test positive for COVID you are eligible to receive monoclonal antibody treatment. If you cannot get them at your assigned breast center due to high need there, contact me and I should be able to get you treatment here.”  he said.

“Oh, my gosh! That gives me such peace of mind to know that I have more options available.” I replied appreciatively.

He ended the session by concluding, “Even if you don’t get your treatment here, I am always available by email or phone to answer any of your questions.  Please do not hesitate to reach out to me.” 

“Thank you, thank you, thank you!” I said.

My dad and I left the appointment thinking, “Who is this doctor?  Is he human? He was absolutely fantastic!” 

On the drive home, I was also thinking about another thing the medical oncologist from my 2nd opinion said, “Typically, how your first chemo cycle goes is how the other ones will.”

“What are the next few days to week going to bring to me?  How will the chemo affect me?” I wondered as my biopsy site started to ache.

I have gone back and forth with regards to how I should share what my chemo symptoms were and I have concluded that I will list them for ease of reading.

Most of the worst symptoms were experienced from Day 0 - 12.  

Here was my experience with chemo symptoms for Cycle 1: 

1. MOUTH and GASTROINTESTINAL (GI) SORES: Sores lined my mouth, throat and entire GI tract.  Eventually, I was diagnosed with mucositis.  Each morning I woke up, it felt like I had strep throat.  Eating was a challenge. I would swish my mouth out with a baking soda and salt rinse, run the humidifier and drink lots of water.  Tylenol was my friend too.  

2. BURNING SENSATION THROUGH MY ENTIRE GI TRACT: It literally felt like my entire GI tract was on fire.  Definitely had acid reflux.  This further complicated eating since everything I ate seemed to hurt. Bowel movements felt like fire too.  

3. NUMBNESS IN MY FACE, LIPS, TONGUE AND MOUTH: This one I was not expecting at all.  The best way to describe this symptom is like when you go to the dentist and they use numbing medicine before your procedure.  It felt like this constantly.  At times swallowing was impaired due to the numbness.  Eventually it wore off as I was nearing the Day 10-12.

4. FACIAL AND SCALP SORES AND REDNESS: Around Day 10 my face became extremely red and flushed along with sores developing on the lower half of my face.  My medical oncologist called in a prescription and numbing cream however when discussing this with my oncology dietician she suggested I eat oatmeal for ALL my sores as well as use oatmeal based soaps and lotions.  The oatmeal did the trick and worked wonders.

5. BONE PAIN: The injections from Day 2 - 10 that my mom gave to me nightly to encourage my bones to make white blood cells in order to improve my immune function gave me some of the worst bone pain I have ever felt.  I took Clartin 30 minutes before each injection as suggested but I still had quite a bit of bone pain.  It started in my breast bone and then would move around to my hips, back and iliac crest area.  Sometimes the pain was so great nothing would give me relief.  No positions were comfortable and pain medication was mediocre at controlling the pain.  The best thing was a heating pad during those times.  

6. FATIGUE: This I was expecting, the worst fatigue lasted from Day 3 - 7 and then I started to perk up a bit.  The tricky part is that you take a steroid medication to prevent toxicity due to chemo starting the day before chemo and ending two days post chemo.  The steroid kept me awake even though I was SOOO tired.  Once the steroid wore off, I felt like my body was telling me I needed to sleep extra. 

7. BIOPSY PAIN: I know this isn’t a symptom related to chemo but rather the procedure I had the next morning but it still impacted my experience during the first 10+ days.  It was uncomfortable to sleep for several nights due to the pain.  I would ice the area on and off throughout the first couple of days which did provide some relief.  

8. BRAIN FOG: It was hard to write out my thoughts, especially Day 2-8.  My processing time was delayed.  Answering simple questions seemed challenging.  

9. MENTAL WEAKNESS:  Around Day 5, I reached out to Amy and asked her what she thought about me taking the drugs prescribed to me for anxiety and depression.  I discussed with her that I thought I had mental toughness, but now I was being thrown a curveball.I didn’t feel like myself.  For me, it felt like I had a new board game, a chemo/cancer one and though I am familiar with my previous ones I was terrible at this new one.  I didn’t know all the pieces and I kept rolling, “Go back 3 spaces.”  Amy validated that this was “normal and it would ebb and flow, take the medicine if you need it..don’t delay.” We would stay up texting about our darkness and how we can get through it.    

After Day 10-11, I started to feel like myself, I started to get pieces of my old gameboard back.  I felt like I was in my own body again.  I could eat more and workout.  

Around Day 16 my hair started to fall out.  Hmmph.  I’ve dedicated an entire post to this experience which was quite a rollercoaster, please view my “HAIR LOSS AND CUT” post for a raw, humble look at this experience.  

As I neared Day 18 and geared up to fast yet again for cycle 2 of chemo I thought, “Jeez,  I feel so great! I feel like me!  I have to do this all over again!  What a mind f***” 

Then I did what I always do when things get tough, I put on some motivating music and took myself outside with nature for a nice walk and talk with my inner Ashley.

At the end of my walk and talk, I reminded myself of this quote from David Cooks, “Your ABILITY to endure is always greater than your WILLINGNESS to endure.”

AND endure I will!