“Where did my eyelashes go?” I literally said this out loud just last week. I was getting ready to meet one of my Origami Owl Jewelry Bars (party) hostesses and set up her party. I was putting on my mascara and when I got to my right eye, I had a clump of eyelashes missing. Obviously, the picture is not of me.
With all of the help for breast cancer survivors, why isn’t anyone concerned about eyelashes? As I have noticed over the 5 years since chemo, my eyebrows have thinned out, too. I see all of these tips in magazines for making your eyebrows and eyelashes fuller but what if you don’t have much to work with?
I remember being so self-conscious when my eyelashes fell out during chemo. After my 4th round of Red Devil Chemo, (Adriamycin), my eyelashes were gone and I did my best to compensate with eyeliner. I wore glasses so it wasn’t incredibly noticeable but I knew it. I am 5 years out from that beast of a chemo (Red Devil) and thankful to be here.
Okay…my view/opinion about breast cancer… the very hormone, estrogen, that defines you as a woman ends up globbing together with other estrogen cells to become breast cancer. So the very hormone that makes you a woman, trys to kill you, and the treatment robs you of your hair, eyelashes, eyebrows and so much more. I hope you can infer that I find this entire concept, hideous, outrageous and unacceptable. However, I can’t change that so I will only give it this small paragraph.
Just wondering…we have the option to cover our scares with tattoos and some tattoo artist provide that service for free. We’ve come a long way.
Just what about eyelashes and eyebrows. Can’t somebody help? Would a company step up and donate services to breast cancer survivors to donate eyelashes and free makeovers at least once a month?
Maybe, we will find a solution before someone else asks, ‘Where did my eyelashes go?”
On February 26, 2009, I was back at the Cancer Center for my last AC/Red Devil Chemo. I was thrilled! My PICC was inserted in my right arm and this was going to be the first time that it was accessed. First, I met with Dr. Wonderful (Hematologist-Oncologist) to review my progress. She was surprised that during my last visit I was able to take the AC chemo in the vein and today would be the last AC treatment. YAY! She examined the port site and there was no improvement. In fact, it looked even more suspicious so she was very confident in her decision to not use the port on the last visit. After a review of lab work, I was off to the chemo chair.
The only downside to a PICC is the bandage removal each time that it is used. My skin was very thin by this time and if the bandage was ripped off, a layer of skin would come with it. Some nurses were more patient than others. Once the bandage was removed, the site was cleaned and the chemo infusion began. I put my feet up and listened to my praise and worship music while I updated my notes regarding my visit.
Routine At Home
When I went home, I ate a light dinner, visited a few minutes and went to bed. By the 4th dose of AC chemo, more of the drug was in my system and it hit me hard. I took my anti-nausea medicine regularly with my purple Gatorade. I laid very still so I wouldn’t get sick. I stayed in bed until mid afternoon the next day. I rested Saturday, Sunday and stayed home from work Monday. I usually went to work by Monday but this was different. I was extremely exhausted, weak and nauseous. I kept hearing Jerry’s voice (my 1st chemo nurse) in my ear. “Don’t be a hero.”
I returned to work Tuesday, March 3rd because I needed to prepare the FCAT test booklets. I worked all week from March 3rd until the following Monday, March 10th. During that week, I noticed a couple new symptoms: shortness of breath, extreme exhaustion and a low-grade fever, 99 degrees. Gale was helping me with testing preparation and she noticed that my breathing had changed. My breathing was labored and every now and then I had to take a deep breath just to catch my breath. I called my doctor’s office and the nurse told me that I should be okay as long as it wasn’t a high fever. So, I went on working for the entire week and the following Monday, 3/9/09, I still had a fever so I called the doctor. She told me to come in that afternoon.
When I went to the doctor that afternoon, she was concerned with the redness around my port site and that I had a fever for a week. She put me on immediate bed rest. I told her that I had FCAT that week and she said, “I don’t care. You don’t go back to work until I tell you that you can go back to work.” OH MY! This was a major roadblock. I called my principal to tell her and I apologized profusely. Then I was sent to the chemo lab for IV antibiotics because they were supposed to work faster than the pills.
The next day, my mother-in-law went out of town with some friends. I told her that I would be fine. I did not feel well at all. I could barely breathe and I hurt all over. I ate popsicles and stayed hydrated with purple Gatorade. By mid-afternoon, my fever was getting higher. I went to the chemo lab for my IV antibiotics and my fever was 101 degrees. It was definitely getting worse. The chemo lab nurses had to report my condition to Dr. Wonderful (Hematologist-Oncologist) and well….she sent me to the hospital. I called Doug and my mom and told them that I was being admitted to the hospital. Even though I didn’t want to go to the hospital, I loved my doctor. That’s why I call her Dr. Wonderful (Hematologist-Oncologist) because she was so smart. She suspected all along that the port was infected and that is why she refused to use it. She admitted me to the hospital because she was concerned that the infection would lead to Sepsis, a condition in the body fighting a severe infection spread through the bloodstream.
I stayed in the hospital 7 long nights and 6 long days. No wigs…just my fuzzy hat, minimal makeup, and occasionally I got dressed and sat in the chair. My dearest friends visited me and saw me in my fuzzy hat. By Friday, I really wanted to go home for the weekend but Dr. Wonderful said no! I had to stay the weekend and on Monday, March 16, 2009 that infected port was removed from my chest by the Breast Surgeon. She had to take several inches of the surrounding skin so that she could ensure that the infected skin would be gone. I have a really bad scar but I am alive. I was released from the hospital that night and I went back to work the next day.
After the side effects of the January 15th chemo subsided, the next two weeks were pretty normal. I was working every day and Monica, Principal’s Secretary, made pink curtains for my office. She was so thoughtful. I was learning to embrace the pink. During chemo education, I was given suggestions for some wig shops in town. My friends Debbie and Moe, met me at the wig shop after work so that I could order my wigs and have them ready when my hair fell out. With A/C (red devil) chemo, I could expect my hair to fall out between two and three weeks and I wanted to be prepared. I had already ordered turbans to wear at home so I could be comfortable.
My church always participate in a two week fast in January. The fast was coming to a close with a special service on January 25, 2009. The service was a time of worship and prayer. I was 10 days out from my first treatment so Doug, Kelsey, my youngest daughter, and I went to church that night. At the end of the service, they asked for those who needed prayer to come forward. There were so many people who went forward and I was one of them. I’m not sure how it happened but I ended up right in front of my Pastor. I told him that it was aggressive breast cancer and he began to pray. When he was done, I turned around to see that Kelsey was crying. I hugged her and told her that I was going to be fine. Our friends Rudy and Bridget came down to support us and they had not heard of my diagnosis. We briefly updated them and found our seats. As I went to bed that night, I just asked God to renew my blood with his healing power as it flowed through my body while I slept. I thanked him for healing me and giving me strength to get ready for my next treatment on Thursday. Well, about 2 AM I woke up to the extraordinary feeling of warmth circulating through my body. It started in my right leg and went all through my right side and through my mid section. It was like the blood was flowing through my circulatory system. I just cried and thanked God for his healing power. I will never forget that night and I have never told anyone about it until now.
Ready or not it was Thursday, January 29th…time for my second chemo. It was the same routine on January 29th as it was on the 15th:
I worked most of the day.
I left work in time to take a shower and to listen to my praise and worship music.
My mom came and picked me up because I couldn’t drive myself.
I met with Dr. Wonderful (Hematologist-Oncologist) to review my blood work.
I went to my assigned chair in the chemo lab and got started with the A/C (red devil) chemo infusion.
Then, I went home to eat dinner, provided by the dear staff at my school. They sent food with me every Thursday.
This treatment hit me sooner than the last one. I went to bed about 8:30 PM and stayed there. I only moved to take the anti-nausea medicine and sip my favorite purple Gatorade. I laid very still so as not to get sick. This treatment hit me with extreme nausea and fatigue. I stayed in bed only eating when I had to take meds and got up around noon the next day, Friday. Saturday, I sat in my special chair in the living room and rested now and then. There was no need to try to be a hero.
Wigs, Turbans…Not SO Boldly Bald
My wig order was due Saturday and I was supposed to pick them up on Sunday. I wanted to bond with my girls in a hair cutting celebration but it didn’t really turn out to be a celebration. It was still too raw for all of us. The girls didn’t really want to cut my hair so Kelsey took the pictures and Paige reluctantly began to cut my hair. All of us had to hold back tears and we tried to smile through the tears. I admire all of the women who journey through this disease and boldly go bald. That just wasn’t me. After my head was completely shaved, I joined Doug and his mom in the family room. I was wearing a soft beige turban. Turbans and wigs were part of the new normal.
On January 12, 2009, the port was in place and we were ready to go. A portacath is a small medical appliance inserted near the left clavicle and had a tube that went directly to the superior vena cava. This positioning allowed the infused chemotherapy to be spread throughout the body quickly and efficiently and that’s what I needed.
Alone Time With God
Thursday, January 15th was my first chemo treatment. I went to school that morning and stayed the majority of the day because I had a late afternoon appointment. I left work early enough to come home and take a shower and get alone with God and listen to my praise and worship music. In fact, this would become my routine before each chemo. Each time I prayed, “Now God, if this is all a mistake and when I get there they are so apologetic, I won’t even be mad….but, if I need to go through this experience, I trust you and rely on you to give me strength.” You see, I am only human. Yes , I’m a Christian and I need to practice what I preach but….I am human, therefore, I rely on God for strength. Before I knew it, my mom was at my house to pick me up and we were on the way.
Visit With Dr. Wonderful (chemo doctor)
When I arrived at the doctors office, the nurse brought out a pill for me to take, Emend, so I would have it in my system before my treatment. It would help with the side effects of nausea and vomiting. It was my turn to see the doctor first. I went back to the office and Dr. Wonderful asked me how I was doing. I told her that I was scared. There were so many negative stories about chemo and I was scared. She assured me that everything was going to be alright. She reviewed my lab work to make sure my blood counts could sustain the first dose of A/C (red devil) chemo. She ordered more testing: Bone Scan, Breast MRI and BRCA testing. After all, I had two daughters at home and we needed to know if I carried the BRCA gene. She also gave me a prescription for an anti-nausea pill to take for 24-48 hours after chemo.
Dr. Wonderful reminded me that I should have minimal contact with the public:
no trips to the grocery store
no eating out
no drive throughs
no church (Well, I still went to church for a while but I avoided all of the handshaking/greetings.)
The chemo lab was ready for me. I went to my designated chair and was greeted by Jerry, one of the best chemo nurses. As he was attempting to access my port, he said, “I’m going to need a long needle.” I know that I went pale. I looked at my mom with the same look you give your mom when you are getting your childhood immunizations. She excused herself to go get a water or snack. I just know she left.
By the time she got back, I was all hooked up to the ‘red devil’ chemo. It was literally red. Jerry brought me a warm blanket, I reclined my chair and zoned out to my praise and worship music. I updated my notes, lab reports and chemo orders from my doctor’s visit in my notebook. Jerry checked on me frequently since this was my first time to receive A/C chemo. When I was almost done with my treatment, he said to go eat a good healthy meal with protein, non greasy, because it might be all I have to eat for a few days. I took his advice and had a very healthy meal.
When I got home, I visited with my girls and husband and around 10-10:30 PM, an indescribable feeling came over my body. It was like the room was spinning and I felt like a 50 pound blanket was covering me. Per Jerry’s advice, I went straight to bed. I didn’t want to vomit/get sick so I laid very still. My mom came in with the anti-nausea medicine and I really didn’t want to move to take it because I didn’t want to get sick. Every time I moved my head, I felt an overwhelming feeling of nausea that I could barely hold back. So, I laid very still!
The next morning, my mom came to stay with me and brought me some pears to eat with the anti-nausea medication. Purple (light) Gatorade became my best friend. It was the only thing that felt good on my stomach. When I would eat or drink, I would try not to lift my head any more than necessary. When someone would come in the room to talk to me, I would not move my head to look at them. They would have to move to my direct line of vision.
I slept the next day (Friday) until about 1:00 PM. I sat out in the living room for a couple of hours and tried to eat something and headed back to bed. Saturday, I spent most of my time sitting up in my special chair in the living room. I still had a strong feeling of nausea. On Sunday, I went to church, avoiding all of the hand shaking. Later that afternoon, my dear friends Debbie and Moe brought an amazing meal of baked turkey, mashed potatoes and rolls. I was feeling good enough to eat a little more each day.
I returned to work on Monday trying to keep life as normal as possible. The new normal would begin. The neupogen shots had arrived at my house and Paige would start to give me that injection Monday night. I am so blessed that she graduated from Nursing School on December 11, 2008. God knew that she would be essential to my recovery. God is so good!
Before you start chemo, you have to attend Chemo Education. I had never heard of Chemo Education. Chemo Education is scheduled with a nurse. My nurse was the sweet nurse from Dr. Wonderful’s office. I am going to refer to the Hematologist-Oncologist/Chemo Doctor as Dr. Wonderful. Doug, my husband, went with me to Chemo Education. The clinic suggests that you bring at least one of your care givers. I had my calendar with note paper in the back and I was ready to take notes.
The nurse went on to explain…
1. 4 weeks of AC chemo every other week… with this chemo you may experience the following side effects… sores in your mouth, loss of nails, nausea, vomiting, fatigue, body aches and pain and you will lose your hair. This chemo was known as the red devil. After each cycle of this chemo, you will need Neupogen shots. (Neupogen shots stimulate the production of white blood cells. The shots will be needed between 5-7 days after each treatment. It depends on results from lab work.)
2. 4 cycles of Taxol and Herceptin (No extra shots with this chemo. YAY!) With this chemo, you will experience the same side effects as the AC chemo. Your hair will not begin to grow back until this chemo is out of your system.
****Everyone responds differently to chemo. The nurse did say to eat protein and foods that contain potassium. Also, the acrylic nails must come off immediately. (I loved my nails. As an Assistant Principal, I would attend meetings at school and at the district level and I liked for my nails to look nice.)
As I returned home with handfuls of information, I realized that I needed to organize all of this information so I could find it as needed. I had a couple of small piles already…. chemo info, notes from two doctors and my mammogram and CT report. I decided to organize the information in a 3 ring binder.
I set up the notebook according to the following categories:
2. Doctor’s visits – I took notes at every conversation with each doctor, filed it by date in the notebook and put a copy of the notes and the lab reports in a plastic sleeve.
3. Copies of all Test…CT Scans, PET Scans, MUGA Scan, Pathology Reports, Echocardiogram, etc…
4. Miscellaneous Information
I took my notebook and calendar to every visit. I had questions written ahead of time so that I didn’t forget anything. As I sat in the chemo chair receiving the infusion of chemo, I organized my notebook. When I got my very first chemo, my nurse, Jerry, asked me what my notebook was for and I told him that I take notes at every doctor’s visit and ask for a copy of my chemo orders and all lab results. He replied with something like, that’s a good idea because we aren’t Jesus Christ. We aren’t perfect.
One more tip about the organization of the notebook. In the front of the notebook, I had a 3 ring pencil pouch so that I would always have my writing tools and a 3 ring business card holder. I kept a business card from every doctor and everyone affiliated with my treatment.
The most important thing that I want you to remember is that you are in charge of your health care decisions. You can research your doctors, be an advocate for yourself or designate an advocate. You are more than a statistic. You are so important to God that even the hairs on your head are all numbered. (Matthew 10:30 NIV)