Code Pink Episode 3: Chemo, Port Access, & The Pain They Don't Tell You About

*In this series, I will share a very raw personal journey. As you read this blog series, none of the information provided should be considered expert medical advice. What I went through may or may not be the same for the next person. I tried to share common reactions to treatment and how to manage. I am also not paid to advertise certain products. Please follow the direction of your medical doctor. The information in this series should be read with a smile. Please also be aware, I am very honest. I tell it how it is. I don’t sugar coat but I can be sarcastic. For that, I apologize for the occasional profanity. The tips and suggestions are things I’ve learned along the way, helped me, and information I want to share with you.

Chemo days are LONG days. Plan to spend 5-7 hours/day at chemo. I can’t speak to every facility or everyone’s chemo regime, but the morning of chemo I would go in at 8:30am and get my port accessed and have labs drawn. At 9:00am I would meet with the oncologist and review how I was feeling, weight, diet, pee/poop status, and she would decide if I got chemo that day based upon my labs. She would also do a physical and we would talk about what worked the last cycle and what didn’t. Medication adjustments were made if needed. At 9:30-10:00am I would sit in the infusion chair for my pre-meds. Around 11:00-11:30am I started my actual chemo infusion. Infusions would last anywhere from 1.5-3 hours long. After the infusion they’d let the remaining fluids run in rounding out a 6-7-hour day. All of these times were dependent on the previous task. If labs were bad, no chemo. If labs were good, we were a go for chemo but then the pharmacy had to mix it and send it down. On days one and five (when I started a new medication) I sat out in what I called gen pop or general population (a little jail humor for my deputy husband), instead of a private room so the nurses could monitor me closely in case I had any emergency side effects or reactions.

            I remember my first day and I was anxious about accessing my port as it was still tender from surgery so I lathered it up with Emla (numbing) cream. The access went fine so that was good, just a little sore. I started with pre-meds which included Zofran and dexamethasone to help with nausea. I also had a bag of fluids going. After the Zofran was done I got another mediation called Emend which is a long-acting anti-nausea medication. Unfortunately, I had a reaction to that and it had to be stopped. My tongue swelled and got tingly, the roof of my mouth got tingly and my neck and ears got red. No more of that. No need to die before the dang chemo even starts! After that, I was switched to Aloxi.

            Once pre-meds were done I got the chemo. We started with the “Red Devil” aka Adriamycin (Doxorubicin). Adriamycin is an anti-cancer medication from the anthracycline antibiotic family. It is very toxic and there is typically a lifetime dose of this medication. It is also dosed based upon weight. It looked like red kool aid. I noticed the nurse pulling back on the syringe as she was giving it to make sure we were still in the vein…if not the chemo can leak into the tissue and kill it. I thought, Ok, pulling back for blood was a good idea. I remember one nurse telling me the red devil med was stealth and because it was red in color it blended in with my circulating blood and the cancer cells never saw it coming. A little guided imagery for ya…whatever helps paint a strong mental picture I guess!

            After the red devil they hung the Cytoxan (Cyclophosphamide) for 1.5 hrs and I waited. I ended up sleeping every day. We got a lot of education at the bedside. I learned all about the side effects and the pharmacy of medications I was going to start taking. I learned about good hand washing, foods to eat and ones to avoid, flushing 2x to make sure that my toxic urine and poop got out of the toilet for the next person, washing my clothes separately etc. It was all very overwhelming and scary. Luckily they give you handouts on everything in case you forget. My nurses also recommended bringing someone with for education day, a fresh set of ears.

            By the end of the chemo I was felt my stomach growling and felt very dizzy. My mom took me home and I could barely make the car ride. I got so nauseated but I never threw up. I wish I would have, I probably would have felt better. I remember being walked upstairs and lying in bed while my mom rubbed my sore back (a normal side effect is bone pain) and my tummy to help with nausea. I got a cool wash cloth for the excruciating headache. My Dad hit the grocery store for saltines, ginger ale, lemon drops, cough drops, animal crackers, you name it. Anything to get me to eat. All I could do was lay in bed and try not vomit. I took my 4 medications and went to bed that night.

            For three days after chemo I would feel extreme fatigue and nausea. I often went into the clinic or ER for fluids because I was dehydrated. I lost 13lbs in the first week and my oncologist told me things could not continue that way. Dang, I thought to myself at one point…OK…high school jeans are gonna fit again! But I knew that wasn’t healthy. Around days 5-8 after chemo the nausea subsided but the fatigue remained. I ended up taking medication for chronic constipation and actually developed an anal fissure that would hurt and bleed every time I pooped. Just about the time I was going to go back in for my next cycle (days 12-13), I’d feel “normal” and back to myself all for everything to start all over again. This cycle continued for two months (4 cycles of A/C) while I was on that chemo treatment.

            In month 3, I started Taxol (Paclitaxel). I decided to do stacked doses which is three doses in one. This way I only had to do four cycles, once every other week. The other option was 12 cycles, once a week. No thanks, I didn’t want to be poked eight extra times even if the side effects were supposed to be less. Nothing changed on infusion days except the pre-meds and the infusion time was longer. According to my oncology nurses, Taxol has a high rate of allergic reaction so they gave me Benadryl, Pepcid, Aloxi (anti-nausea) and Decadron (steroid). All of these medications help fend off allergic reaction and help with nausea. It was also good, per the nurse, that an emergency epinephrine kit along with an intubation kit was standing by in case they needed to put a tube down my throat to secure my airway. OK… good tip!!!! Within a couple minutes of getting the IV Benadryl I was LOOOOOPPPPYYY!! I guess I entertained my husband for a good 30min. He has blackmail videos to prove it. It made me very giggly, irritable, gave me tremors. Eventually, I had to get up and walk around because sitting in the chair one more minute wasn't going to happen. I’ve had oral Benadryl before but this is apparently a normal reaction for someone who doesn't take a lot of home medications (not used to it) and how fast they gave it. After I walked around the infusion center I fell asleep for 2 hours. As soon as I woke up I asked if I had an allergic reaction. Apparently not if I slept through it.

            I had no nausea, no vomiting, and I wasn’t as tired. I could eat again. It still tasted metallic but I could eat and drink whatever I wanted. But HOLY bone pain Batman. I again had a cycle. Day one, felt great. Day two, I had burning and redness in my hands. My first infusion I thought I was having an allergic reaction but I learned it was a normal response. On day three, I would wake with extreme muscle and bone pain. The muscle pain felt like I had just done the hardest lower body workout of my life. The bone pain felt like sharp, stabbing twinges in my knees and shins. I also developed neuropathy or numbness in my fingers, toes, heels, and face. With my hands, I felt like I've touched a hot burner and scalded off my fingertips. It was constant throbbing. With my feet, I felt like I'd run a marathon over hot coals and my toes were going to shoot off the end of my feet. The numbness was excruciating at times. Like when I was trying to go to bed. Just touching my heels to the bed was painful and often kept me up at night. Wrapping my feet in a heating pad helped sometimes. I found pain medications wouldn’t touch this type of pain. I sat under two heating pads and stretched in the shower. My doctor eventually gave me a medication called Gabapentin for nerve pain, typically given to chronic pain or diabetic patients. According to my oncologist, neuropathy can last years after treatment is completed. The bone and muscle pain lasted four days and then I felt better again. Taxol was a lot more manageable for me than A/C.

            The day after each chemotherapy infusion I would go back into the hospital (the 24hr mark) and I’d get a shot called Neulasta (Pegfilgrastim). Neulasta is given to help stimulate the growth or production of healthy white blood cells during what’s called the Nadir period. The Nadir period is the low point in between chemo cycles when you have low blood counts. The Nadir period usually starts 7 days after chemo, peaks 10-14 days, and you recover 21-28 days later. This is why some people get chemo every three weeks because it allows the body to make their own white blood cells. If you are on a more accelerated or dose dense schedule like every one or two weeks, they may give you Neulasta. This shot can be very painful (typically given in the back of the arm) as it stings when it’s given. Ask for the shot to sit at room temp as this can help with the burning sensation. Just a heads up, this little shot was average $8000. When I first saw the insurance bill I just about dropped to the floor. BUT…in the grand scheme of things…getting an infection and requiring an ER visit or hospitalization would cost a lot more than $8000. That’s how the nurses justified it to me anyways!

           Throughout chemo, people asked me all the time how things were going and I believe people genuinely care but weren’t ready for a real answer. Sometimes I answered honestly and sometimes I put out a blanket "OK" type statement.  I don't know if people really understood what it's like to have cancer and go through treatment and that's OK. Thank goodness not everyone has to experience this during their lifetime. On May 18^th, I had my last day of chemo. There were times I thought the day would never come. Days, I questioned the process. At age 33yo, I never imagined I'd be diagnosed with stage 2 breast cancer. It was physically, mentally, and emotionally challenging but was done! It is by the far the hardest thing I’ve ever had to do and experience. I don’t wish it on anyone.

  After chemo my family and I went out for BBQ (my favorite food) to celebrate. Everyone wore their cancer sucks shirts...we looked great!  It was fun to celebrate being done with this phase! As part of the celebration I did a balloon release!! There was one balloon for each day of chemo. Gone are those balloons and my days of chemo infusions. It felt good to let this phase go.

*Tips For Surviving:

In an effort to be more transparent and to help me come to grips with reality, I shared the following on my Caring Bridge Site: Chemo is not rainbows and unicorns. IT SUCKS

1.      I went in every other week and got poked with a 1inch needle in my chest. The needle allowed the nurses to draw bloodwork and connect my IV tubing. The positive was that they don't fish around for a vein multiple times.

2.      I got 3-4 medications to help prevent or lessen a side effect or allergic reaction before my 3-hour infusion. Those medications in turn had side effects.

3.      After the infusion, I was tired for days to a week. I usually felt like myself again 7-8 days after an infusion.

4.      I had no energy. Some of this is was due to low hemoglobin and low oxygen but the meds make you tired. I took naps almost every day. I used to box and workout 3-4x/week and during treatment I couldn’t walk up a flight of stairs without getting short of breath. It's humbling.

5.      Nothing tasted right. Losing taste, or having a metallic taste is normal. Some people even develop mouth sores. Many times things don't sound good so I ate the same meals over and over or I don't eat at all.

6.      I didn’t sleep. Pain kept me awake at night along with thoughts about how much cancer sucks. I tried different sleeping pills, meditation, rain noises, and some work, some don't. Eventually I fall asleep after being up for hours but I didn’t ever feel rested.

7.      My mind constantly wandered. Thinking about treatment, thinking about pain, about my kids, my husband, going back to work. Wondering what my future held. Would I live a long life...would I not? Sometimes due to the meds I know what I wanted to say but I couldn’t say it. I felt foggy and didn’t have clear thoughts. My mind rarely shut off. This fogginess lasted for months after chemo ended.

8.      Just when you felt good (a week after infusion), you had to be careful about venturing out into the world because that's when you are at the biggest risk for catching an infection. I was never more aware/afraid of germs in my life. I used the little wipes at the grocery store to wipe the cart, I avoided crowds, avoided sick people the best I could, and I had hand sanitizer everywhere, I didn’t venture out of the chemo bubble often. Not even for holiday or family gatherings. Getting an infection with no white blood cells to fight it is a big problem. Getting the slightest fever would have sent me into the ER and likely incur a 2-5 day hospital stay. It's scary. It's hard to live life like that.

            I wasn’t trying to complain or be negative. People asked daily how it was going. This was my honest answer. Even when you have a good day, cancer has a tendency to remind you who's in control. I tried to find strength in the people around me and enjoy little moments every day. Some days were good and some were bad. It depended on the day. As you go through treatment it’s important to be mindful of your body and the changes it goes through. As I previously stated, the nurses should go through basic education regarding side effects and what to expect. Don’t be afraid to call the nurse line with questions or concerns, you don’t have to be alone with your worries…that’s what they’re there for. Better to be safe than sorry when your immune system is compromised!