JOURNAL

Chemotherapy 101

Updated: Feb 19, 2018


My medical oncologist, Dr. Maryliza El-Mary is smart and kind. She went through my treatment plan and explained what would be done for my CHEMOTHERAPY. I would be taking four drugs INTRAVENOUSLY (IV) through a Port-a-cath or Mediport. This way I would not have to go through any issues of finding a vein and or damage any veins while receiving chemo. I have six rounds of chemo with a immune boost the following day. This port will be accessed at least a dozen times. The port would help to not only protect my veins but distribute the drugs easier throughout my body. A titanium port was surgically inserted into my left bi-cep just underneath the surface of my skin. Shaped like a triangle with bumps to mark the shape and to help make it easier for nurses to insert the needle between the markers. After two treatments, it was a great decision to have it done. The other option would have required to have a surgical doctor place a port in my chest. After all checks of my heart were cleared I was given the green light to start chemotherapy.


My first chemo round was Wednesday, April 13th. As mentioned I would be getting four drugs. The first day is the longest. They time the infusion of the drugs slower as to make sure you are not going to have a reaction to any of the drugs. One drug took an hour and a half while the other three took one hour each. The second round three of the drugs will take 30 minutes and one drug an hour of infusion time. I also have to take prep drugs of Tylenol, Steroids, Benadryl and Hydration prior to receiving the chemo drugs. The first drug was Perjecta (generic name Pertuzmab) this drug combined with Herception the second drug is to specifically treat my HER2 positive breast cancer. The second drug Herceptin (trade name Trastuzmab) is part of the Adjuvant treatment treatment of the lymph-node positive, HER2/ neu protein positive breast cancer. The 3rd drug Docetaxel (trade name Taxotere) takes care of breast cancer and can lower white and red blood cell counts. This also has side effects of nerve damage. This is the drug which has me wearing oven mitts on my hands with ice packs inside to constrict my veins so the drugs don’t go to my finger tips and toes. Note: have lunch prior to this drug. Longest drug to infuse. And last but not least the fourth drug was Carboplatin (trade name Paraplatin) which is also to treat specifically the breast cancer. This one gives you what is called the CHEMO BRAIN FOG. Completing sentences I would learn can be really fun with chemo brain fog.


The SIDE EFFECTS is a doozy of a list. To name a few, decrease in appetite, mouth irritation, mouth sours and heat, weakness, swelling, muscle aches, joint aches, headaches, fever, vomiting, itching, nausea, anemia, difficulty sleeping, and my favorite diarrhea and this list could keep on going and going. This was the first stage and I was ready to get started. Even with the list of side effects I took the mindset that the list is there and noted. I would be prepared with how to treat them if any or all I would experience. But I stuck with the attitude not to expect it and I was awarded a good first round of side effects. I got to see a lot of my bathroom for 5 days. At all hours of the day. Jumping out of bed at 3am and running to the bathroom in the dark half asleep can be quite a show of skill. That same week food felt like I was eating with a burnt tongue. I had no taste buds. Eating with plastic flatware was better than metal flatware. But I was going to be proactive. Before chemotherapy started I had changed my DIET, starting doing YOGA and MEDITATION again. I also started seeing an ACUPUNCTURIST once a week. This really helped with the side effects. The one thing that I need the most help with is EXERCISING. Walking is what I consider exercising. Which technically it is. But I have it ranked low on the priority list. I would rather meditate five times a day over 30 minutes of exercising. I would like to start RESISTANT TRAINING. My sister, Johna I will ask her to help me with that one. She has built a strong body to be proud of. And I need some lessons.


So after the second week which entailed living in my bathroom and no appetite, the third week brought the loss of my hair. It was Tuesday, April 26th. I was getting ready for my day and went to run my fingers through my hair and pulled away strands of hair in my hand. “And so it begins,” I thought. At my first chemo round I met the sweetest and most kind nurse practitioner. We talked about the chemotherapy and the side effects, how to treat and emergency situations that would need immediate attention. We covered hair loss and she would give me a prescription for a wig and suggested a wig maker in Beverly Hills. I made an appointment for two days later. I had my friend EvaLotta come with me. Great to bring a girlfriend. It was fun and relaxing. I found the perfect wig. It was real hair and it matched my hair color perfectly. Once she told me the price of $4500 and later when I learned my insurance would not a cover wig. The answer was decided. I decided to rock it like my fellow sister and brothers and go bald or with a head scarf. I would welcome the summer with no hair. I saw more benefits with that then spending or justifying paying for the wig. I understand why someone may want to pay that amount. They did amazing work. Anything to lift the spirits. I would not judge someone’s choice to pay such a high price. For three or four months of no hair, I would leave the beautiful wigs for people who suffer from loss for a longer period of time and really need it more than me.


As a quick mention I did look into the Cryo Cap (example of one of the companies out there) which is a treatment to prevent hair loss. This would have required that I wear this special hat and place ice packs that would keep my head temperature between 40-50 degrees. I would need a friend to help me because this is outside contracted treatments. Nurses generally to not help or are required to help patients to get this treatment. It would cost approximately $365.00 per treatment (I had six rounds). Plus a deposit for the hat, ice packs and cooler for another $375.00. For a total of approximately $2400. Which there would be no guarantee it would work. Plus no washing your hair until three days after treatment, no heat which meant no dryer, flat ironing and or curling iron. Why would I want to keep my jacked up hair for that much. Another reason to just shave it off.


Which brings me to telling my girls that mommy was going to “SHAVE IT OFF!” I wanted this to be something special and teach them the power of choices and taking action. I am not a victim. I was ok with my hair falling out for the first few days. It was nice. For someone like me who has really thick hair. I mean really thick hair. Lightening it up felt really good. I have always appreciated my hair and the thickness of it. But a choice between life or my hair, chemo and the hair going was top choice. Ava knew my hair would fall out. She actually asked me the day I told her I had cancer. “Will your hair fall out?” So the expectation for Ava was a little more settled. As for Gryffin who is five, trying to tell her that mommies hair was going was going to need a little finesse. It was Friday, April 29th a few days after realizing my hair was falling out, I asked Ava, “What do you think about shaving my hair off?” She replied, “Is it falling out in chunks?” I replied, “no, but it’s falling out.” Hair was kind of all over me and I was ready. But I needed my girls to feel ready too. Ava asked, “Can we do it Sunday or Monday?” Knowing that she had a soccer tournament Saturday and Sunday. I said, “ok, we’ll wait.”


Gryf would need a talk too. This I knew would need a little more thought and explanation. That night at dinner I told Gryffin, “You know Gryf how mommy is taking medicine to get better. Well the medicine can also make my her hair fall out. What do you think of me shaving my hair off?” She looked at me with this confused look and then said, “Ok. Who is going to do it?” I replied, “Your dad is going to shave it off.” She said, “Ok” and then jumped off my lap and went into her room. Ten seconds later Ava walks back into the room and says, “Gryf is crying because you are going to shave your hair off.” My heart immediately fell open. I asked her to come back into the kitchen. She walked back in with the cry that could break a million hearts. I asked her, “Why are you crying?” She replied, “People are going to make fun of you.” I grabbed her and held her tight in my arms. “Some people may make fun but others will not. That’s ok.” She proceeded to let me know that she was afraid that her school friends would make fun. I told her that, “some will and that’s because it’s not something that they are not used to seeing. It’s kind of a natural reaction until someone explains to them why I chose to shave my hair.” I told her that my hair would grow back and that I wasn’t scared to shave my hair. I explained that the medicine although will help me, it does make my hair fall out. It seemed to make her feel a little better. The roller coaster of emotions would come up again.


It was Sunday night, May 1st and I was surrounded by dear friends that wanted to come and show their support. I was able to have a nice gathering and reflect on my journey so far. What a great evening to reconnect with an amazing group of ladies. I was able to share what I had learned so far and give information for reference. I knew nothing before getting diagnosed about breast cancer. I am still learning. 1 out of 8 will be diagnosed with breast cancer. Knowing your family history, knowing how to prevent, doing self breast examinations, mammograms or ultrasounds that lead to detection, will help anyone’s survival. Through this journey and beyond I will now forever be an advocate for Breast Cancer Awareness. I have joined a sister and brotherhood that will forever change how I see life.


My girlfriends left to attend to their Sunday night family rituals to get ready for the week ahead. My sister Johna and her family were left and I felt the time was right to shave my hair. It was a powerful experience. I had Ava, Gryffin and Paloma cut my hair shorter. Let them have at it and just have fun. Gave them a chance to giggle and release any feelings of worrying they might have had. Hair is hair and it will grow back. I wanted it to feel liberating for them too. To know that in adversity there are always #silverlinings, #blessings to be found. #BlessingsAreEverywhere. Shane then took over and was completely overjoyed to shave my hair. Something he has always wanted to do. Well cancer would now give him that opportunity. He finds beauty in women who can rock a shaved head. It took twenty one years. Here was his chance to see me with a shaved head. He was gentle and really sweet. Complementing me with every stroke. I kept my eyes closed the entire time. It was quiet when he first started. Soon little comments came from Gryf. “It’s ok for mommies to not have hair,” and as Shane got closer to the middle of my head, Gryf roller coaster of emotions started, “Maybe we made the wrong choice?!” Hearing the sadness in her voice. “Mommy’s making the right choice Gryf, her hair will grow back,” Shane replied. A few minutes later in in the silence, you could hear a pin drop and we all heard a little, “toot.” It took a little gas to be released and the room broke out into laughter. I laughed while my eyes still closed, “who tooted?!” And simultaneously Paloma and Ava yelled, “Gryffin!!”


Soon the comments started to flow, “Wow you have a nice shape head.” “You can rock a shaved head.” “Wow you can see the grey.” “Maybe you should keep your hair short when it grows back. It looks good short.” All while my eyes were still closed. I could feel Shane getting close to the end with no more hair to shave. I opened one eye and then the next. It was done. I had a shaved head. It felt great. I felt beautiful. It was powerful to be surrounded by my family. Breast Cancer had given us all another gift. My head felt lighter and cooler. I took out all the scarves I ordered after learning the cost of the wig. I spent a whooping $113 with free shipping for nine from Scarves.net. I watched a YouTube video that showed 10 wraps in ten minutes. Feeling good about my new skills. I was fully immersed in the treatment and healing journey. I’m willing to take lessons from anyone offering. Lol.


I want to end this journal entry by thanking all those who have made a meal or donated to our family using the MealTrain.com that my sister set up for us. I had never heard of this before and a friend from school told me about it. What a #blessing. We get offers to help and this has been the best form of help we could receive. The donations will be used for meals outside of the meals listed on the calendar. The donations have helped to pay for some of the things that insurance does not cover. The INTEGRATIVE MEDICINE can get quite costly. I believe in the support of eastern medicine to help strengthen and detox the body of all the WESTERN MEDICINE of chemo drugs that can be quite taxing on the body. VITAMIN and SUPPLEMENT THERAPY and NUTRITION with Dr. Nalini Chilkov . Along with ACUPUNCTURE with Dr. Rochan Olson at Healing Hand Wellness Center to help alleviate the chemo side effects and to keep my energy circulating, weight up and body strong. Thank you to all the care packages that I have received. The girls love the little surprise we receive in the mail. The cards, charms, art therapy, words of wisdom all of it have all been added to my healing bank.


Thank you for supporting me and for all your comments and messages. Please feel free to check in with me. Email MySoulLegacy@Gmail.com, Facebook @mysoullegacytribe and Instagram @mysoullegacy. If you happen to be in the neighborhood stop by and say, “Hello” to Shane at the store at Garbstore Case Study. He needs the recharge too and I am thankful for those who have stopped by to check in with him. He is managing our business and work with two great employees. I miss being with him daily and being each others soundboards.


Overall I am feeling great. I am showered with so much love it’s the most powerful and beautiful gift that cancer has given. I am full of gratitude. The tremendous amount of kindness that has been bestowed to me and my family is overwhelming. Kindness and courage go hand in hand. It’s a cycle of nurturing yourself. When you are nurturing your relationships you are nurturing the reflection of what you see and need in yourself. You can’t help but be kind and have courage in return. Take time to reflect and see how you look at the world. At the core of your soul it is kindness that is your essential nature. Express kindness in thoughts, feelings, speech and actions.


I look forward to sharing with you all the next journal entry.


Until then, my sincerest love and gratitude,

Novelyn

XOXO

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