Have you ever had a time in your life when you wondered “what the actual fuck am I supposed to do with this?” Yea…I have. Unfortunately, more than once. But here I sit, all the better for it – because what came out of it is me believing in me and truthfully, friends, I wouldn’t give up one shitty hour of the story I am telling because it lead me to where I am today…
Dr. Burns had me scheduled for my mastectomy over the summer of 2014. That is the way you do this, right? Get diagnosed, have surgery to get it out and then treat any remaining cells that may have been missed through chemo and radiation. I remember asking him point blank “I am Beth. What does she do next?” I couldn’t imagine just sitting around knowing I had this time bomb that was growing rapidly in my chest and doing nothing while I wait for an OR to be available and the doctors schedules to jive. Dr. Burns said to me, “no one has ever asked me what to do next like that. I tell my wife to go see Jame in Cleveland.” So that is what I did. I will never forget the way he looked at me at that moment – and I hope and pray he never has to do this with her.
Dr. Abraham was once in Morgantown and then left to be the Director of the Breast Oncology Program at Taussig Cancer Institute and to be the co-director of the Cleveland Clinic Comprehensive Breast Cancer Program. Morgantown definitely lost a shining star, but trust that there are many of us who carpool to him yearly (more on the Dr Abraham fan bus later:).
By May 14, 2014 (remember I was diagnosed 5/6/2014), I was sitting in his waiting room to determine my plan of action and to get his opinion as well. He is an amazing spirit and true inspiration. His bedside manner and disposition is something to be studied and emulated – everyone who has seen him would agree. I walked in to my appointment and waited. Scared. Unknowing what he would say and what the plan would be. I just knew sitting around wasn’t right for me. He came in the room and said I was quite the celebrity. Apparently my boss at the time and my Jennie (that I know of) had texted him and told him I was special and to take very good care of me. He never would tell me who else texted – I just could guess those two.
He took the time to educate me and to tell me what was growing in my right breast had probably just started fairly recently because it was a very aggressive type of cancer from the biopsy results. I totally broke down on him because I knew in my mind that I had done this to myself. I knew that I had eaten the wrong things or stressed out too much or lived my life wrong. I knew I was responsible for this disaster taking hold of my life. He calmly told me horrifying facts – he said that it is not a true question of IF someone we love or ourselves will get cancer, but a question of WHEN. Statistically, 1 out of 3 people will develop cancer in their lifetime and 1 out of 5 will die from the disease – 1 in every 8 women get breast cancer. This is the world we live in and it is scary.
There was a newer chemotherapy drug on the market that had just been FDA approved in September of 2013. Very few people had taken it at that time, but he suggested this was the best course of therapy for me. Perjeta is only used when your cancer is HER2+. At the time, if you have the absence of the HER2+ marker, this drug is not an option. If I were to have had my surgery first, this drug would not have been on the table. I was totally on the fence though! I looked at him like he was crazy – you mean to tell me that I am just supposed to go ahead and live my life with this growing inside of me and try this new treatment? I have drawing after drawing after drawing of his explaining why this was the best idea – why my triple positive (ER+ – estrogen receptor – and PgR+ – progestogen receptor – and HER2+) invasive ductal carcinoma (IDC) was best treated by being left alone at first.
This new drug had been shown in studies to reduce the risk of your cancer coming back by 18% when used in conjunction with Herceptin for a year after diagnosis – not to exceed 18 treatments given every 3 weeks. In addition to this course of treatment, I was also to take Taxotere, Carboplatin every three weeks for 6 treatments. I was the second person to ever receive Perjeta at Mon General Hospital…the first to start in a mere 3 days before me in the same week. I had no idea what to expect – we didn’t know what to expect actually. NONE! But I trusted this team of doctors – Dr. Burns, Dr. Abraham in Cleveland and Dr. Saunders on the ground here in Morgantown. I knew I was in good hands.
By May 20, 2014, I was having surgery to place my port in my left chest wall. This is supposedly to more easily access a direct vessel to get the drugs into your system and to drawl blood out. I hated my port. After than surgery, Dr. Burns told me that I may be a little sore because I had one of the tightest muscles around my collar bone he had ever had to maneuver to run the line. I thought “seriously??? The only tone muscle in my indie body is the one you had to pry off to put a line under? How lucky am I???” The following week, I went in for my first of 6 full day treatments.
Let’s be honest…I had absolutely NO idea what to expect. This was just another in the list of unknowns I was about to deal with. Early on when my dad was first starting his chemotherapy, we had a long conversation. He told me about feeling 100% – as good as it could get at that time before he started taking those drugs. He took a pill form of chemotherapy to start that was something ridiculous like $13,000/pill! WHAT??? He had extreme fatigue with his treatment. As the time progressed after taking a dose, he felt a little better, but never got back to 100% – so the next round he started at more like 90% and so on until he just felt well under 50%. It is very hard to bounce back from the effects of chemotherapy between treatments, this I learned was so very true.
Jan, of course came up to attend my first treatment with me, but you already knew that. I had absolutely no idea what to expect from it. We spoke with the infusion coordinator and of course I had Heather to poison me. Kim accessed my port for the very first time. This was less than a week after it had been put in. NO THANK YOU! This thing feels like it is just below your skin and when they pull out that 1.5 or so inch needle to push in your chest…I just can’t. Although there was a lot I did not like about chemo, accessing my port was one of my least favorite things! Also horrible from all of this, the taste you get when they flush your port. It is simply saline, but you can taste it – and smell it from the inside. I don’t know how really to explain that, but it is awful! And even now, with my port out, I can still taste a normal IV flush in a way I was never able to before and it turns my stomach making me feel green.
So back to having no idea what to expect…all of these drugs come from the pharmacy in biohazard bags. The nurses who come to set them up wear special gowns and whatnot. The bags clearly state not to get them on your skin – because they can cause severe burns and reactions. What in the world are they putting into my body? Why don’t I need to wear a hazmat suit? Why does anyone think this is a good idea? LOL…all the things you think about when these drips are about to start! I had to take oral steroids for a few days leading up to my treatment and then had a steroid drip prior to receiving my medications to hopefully counteract some of the side effects that could come from this therapy.
I remember being able to taste or smell wild flowers as the carboplatin went into my chest. It was such a weird infusion. I remember having a hot flash sensation as the taxotere dripped into my system. The herceptin and perjeta were no big deal – but how was I really to know what caused me to feel so awful when I was getting all 4 therapies at the same time?
After the first treatment I remember coming home and thinking about how I needed to drink a lot of liquids. I took a huge gulp of Gatorade and promptly puked it into the kitchen sink. My port hurt. Seriously, hurt. I had ice on it for another week on and off and got very little relief. The day after my first treatment (a Friday) I woke up red. You read that right…red. I looked like a lobster and my skin was super hot to the touch. But, I felt ok. I had this false sense of everything being ok and I worked all day long. I came home and went to bed. Waking the next morning to my children’s needs – then 2 and 5 – I had no patience. I learned quickly how few patience one has when on such high doses of steroids. I went to wake my now ex husband and told him point blank that he had to get up and deal with his children before I killed them. I had never felt this way in my life!
It is a tired you have never felt. If I was a not enjoying the show I was watching but the remote was 8 inches away from my hand on the arm of the chair, that was too taxing and hard to reach for it to change the channel – seriously, that type of fatigue. We all think we know what tired feels like – especially if we have children or very demanding jobs. We are all wrong. I was a virtual zombie – and a super mean, grumpy one at that – the Saturday thru Monday after my Thursday treatments. I tried to drive to take Emlyn to a sleepover and then went back the next day to pick her up after my first infusion. I never again drove on this two day stretch – it was definitely not safe and a horrible idea.
This first treatment, I really had no idea this was coming. I got up on Monday morning and got ready for work. I stood in my closet and cried about not being able to lift my left arm over my head to get my shirt on. My port site hurt so badly it was unreal. Once I got it together, I worked the entire day. I went to get Emlyn from school and came back to work – that is what we did each and every afternoon during pre-k before we went to get Charly, so why would this day be any different? I got her situated, went into my then bosses office and sat in one of her chairs. She was not in that day and I remember simply losing my shit. I sat there and cried for about 20 minutes all alone – ugly cry, guys! Like I couldn’t pull it together cry. I was 4 days into this new life and had 3 months left ahead of me. 5 more treatments. I was sure I was not going to be able to handle it and that it was going to kill me. Luckily, I woke up the next morning feeling a little more human and that progressed until I went in to the hospital to have treatment number 2 and so forth through number 6.
I remember thinking that I had to be strong. I had to be the poster child of dealing with this crap. I had two girls who were 5 and 2 and I had to show them what beautiful was – that this was defined by inner strength and character, not your hair or outward appearance. Jennie and Tiffany definitely knew the truth as I tried my best to keep everything else to myself…remember that mallard duck looking all graceful on the surface but fighting like hell under the water? That was me! I put a smile on my face each and every day even if I did not feel like it. The side effects from treatment were no joke. I have already told you about the fatigue and the lack of patience, but there is so much more that went along with these three months.
Soon after treatment 1, I started to lose my hair. Beth helped me cut it really short so I was not finding 8 inch hairs all over the place. Then about a week and a half in the clumps started to pull out. That night, my husband and I shaved my head. My girls watched. Wow, did I look like my dad! LOL I did not much like to cover my baldness. I sometimes wore scarfs, but that was rare. I generally just rocked the shiny bald scalp and the little hairs that started to pop back in soon after they all fell out. Turns out, those cells are killed off once but they start to generate quickly (in my case at least) even before treatment is over. I did have a wig, but only wore it for about an hour in my friend Ambers wedding.
You know, since we are being real here, lets really go there! You lose all your hair. ALL OF IT! I am not sure I expected to lose it all. I was lucky to not lose my eyebrows or eyelashes. I did not wear mascara then though because I was so afraid of how delicate my lashes were at the time. The first hair I lost in clumps was actually my pubic hair. No one tells you about that. And one day, it is just all gone. The hair on your legs, arms, face, under your arms…all of it gone! It is actually relatively glorious! If only you could get the hair on the top of your head to come back in and everything else to stay away…work on that cancer researchers!
So, the Perjeta can cause heart problems. I had to have a baseline EKG and redo it three times to make sure my heart wasn’t being compromised. It can also cause you to have numbness and sensation loss in your extremities – especially in your fingers. I was always afraid that would happen to me. I did have weakness in my hands though. Nausea was also a huge problem. I took Zofran before treatment for 3 days and then after treatment for 4 days every 3 hours as set as alarms on my phone. I missed that dose one time and vowed to never do that again! If I didn’t have diarrhea, I was constipated – there was no happy medium there. Everything that left my body for three days after treatment smelled like chemicals. It is a smell I can’t truly describe, but I will never forget it. When you are on chemo, you are supposed to use the same bathroom always and children for sure are not supposed to share the restroom with you. This shit is serious, guys! You also have to watch what you eat – no fountain drinks or machine made milkshakes. Did you know that those machines are so dirty that they can cause a chemo patient to get very ill with their suppressed immune system? Why do we drink out of them when we aren’t on chemo then???
After my third treatment, I developed sores in my mouth. They stayed around for about 9 weeks. To say I was miserable from that would be an understatement. At one point, I counted 22 different places on my tongue, inside my cheeks and lips, and even on my gums. I used “magic mouthwash” which is a mix of Benadryl, Mylanta and lidocaine like I had nothing else to do just to breath. Eating was not really an option at that time. Talking was hard. Everything hurt and there was no way around it.
About this same time, I noticed I could no longer feel my tumor. Dr. Saunders agreed and sent me for an ultrasound. It was not detected! I was so excited that I was going to get a reprieve on the remaining 3 full chemo days. Dr. Saunders simply laughed that off and said there was no get out of jail free card. Even though we could no longer feel or see the tumor on ultrasound did not mean some of it wasn’t still floating around my body. It was also about this time my hair started to grow back in…WHITE. Like this silvery shiny white. That is why I am now a platinum blonde! My hair is that silvery white or pitch dark black…more white than black! But in my 30s, no thank you!
My 5th treatment brought vomiting along with the diarrhea. I could keep nothing down and nothing in. When you are on chemo, your first visit actually, you are given a card to hand to a ER if you are in need of being seen. I thought I was strong enough to not need to use that card. I mustered through my normal 4 day routing after the 5th treatment and then called Dr. Saunders on Monday morning because I felt so horrible and so weak. I walked in, had my bp taken (it was obnoxiously low – like 105/60) and Dr. Saunders was brought in immediately. I definitely got a scolding for this one! Why had I not come into the ER before Monday? Why did I let this get so bad? I was asked if I could walk to the 5th floor, because I needed IV fluids and at least a 24 hour supervision stay on the cancer floor. Of course I walked my ass up there. I got in that hospital, I did not need anyone to wheel me around to a bed! I was still so nauseous that I had dry heaves and was beyond miserable – still with all those mouth sores too. I had a shot of Phenergan and felt like I was floating in a second. I hate feeling that way, but was finally able to sleep. I remember Dr. Burns seeing me on the charts and stopping by to see why I was in the hospital. He told me I looked awful. HA! Damn straight I felt the way I looked too.
I was released the next day fully hydrated and with strict orders to never wait again. On our way home, my mom called and told me I needed to come home. My dad died the next day. The day before his 62 birthday. This is about chemo though…we will revisit this in another blog post…but quickly, it seemed as though many of the people at the service did not know that I had cancer too. I stood near the casket during the visitation and so many people kept telling me how much I looked like my dad. “A spitting image” one lady said. I would look over at him and I kept thinking, “Damn, do I look that bad? I mean, I feel that bad, but I am still standing!”
My mom was finally able to be with me on my last full chemo day though. I guess from horrible things you can sometimes find a rainbow. I was so relieved that we were finally to this day! Day 6 – the last $40,000 treatment day! Yes, this is how much each of my full days costs when you added the drug totals all up. I got through my Taxotere, and then we started the carboplatin. I remember feeling weird – like I couldn’t breath well and my bra started itching something awful around the bottom of my breasts. Then I thought I was just making this up – like it was all in my head. Remember, this is the drug that I could smell a field of wild flowers when it was dripping into my system. So weird! I finally mentioned how I was feeling and a swarm of nurses came in and Jean – Dr. Saunders right hand woman followed by Dr. Saunders. He had never been in the infusion center that I had seen when I had been there before. Now I started to freak out some – that did not help the itching I was feeling. I was having an allergic reaction to this drug. I was lucky it hadn’t happened before. They slowed the drip way down and kept going. I was told that if it happened earlier, I would have still had the drip but with a big ole bag of benadryl first and it would have been given much slower than it had been previously. I was also told I will never be able to have that drug again. Side note, that is totally ok with me and on my long term goals plan!
By Tuesday after my last chemo I was starting to feel much better. Within a week and a half after my last full treatment, I started to exercise again. I felt my strength coming back and I felt better each day. It was so empowering to know that I was feeling so much better and I was not going to be knocked down again! I had the one unknown with chemo left – to see how my body would react to only the Perjeta and Herceptin infusions alone. Luckily, I breezed through those additional 12 chemo days as I had to do that every 3 weeks for the remainder of the year. My surgeries and radiation were actually planned around that treatment.
I had my mastectomy in October of 2014 – I did have a bilateral and I will tell you all about that in the future. The exciting news though from this that deserves to go in this post is that I have no idea what grade or stage my cancer was…as I had 100% response to the 6 days of chemotherapy. All of that was worth it. I no longer had breasts, but I was al 100% cancer free at that moment! I celebrate my new birthday in October of each year now – October 16 to be exact! The day I was told I was cancer free and given a new lease on life! That was the day I began to believe in me – and friends, that is one of the best things I have ever done…all because of this crappy hand dealt to me. I would prefer to never do that again. The treatment days were definitely long, but the time was short and I made it…successfully at that, my girls told me soon after the summer was over that it was “the best summer ever” thanks to my village who saved them from me! Chemo-schmemo, no more!