I mentioned in a post a while ago that I would tell the story of my first chemo infusion and the reaction I had that almost killed me. So here it is. But I didn’t stop there. I’m taking you through the whole journey. Why? If you know someone who has cancer or is a cancer survivor, there are scars and issues that you will probably never see. They are not visible, but they are very real. So, please read this and understand the challenges those friends or family members are dealing with. At this time of the year, with the holidays here, please take some time to reach out to someone who has or has had this insidious disease and let them know you care. Ask them if there is something you can do. Stop and visit them. It will mean the world.
I was diagnosed with Stage 3 breast cancer in 2014. I found the lump myself on a Saturday morning and had to wait until Monday to see my doctor. That seemed like an eternity. She sent me immediately to the breast center at the local hospital. I had a mammogram just 6 months before, and it was normal. Now, they did a mammogram and immediately sent me for an ultrasound. After that was done, the tech went to tell the Radiologist. We had been talking about my grandson and her son (the same age), and had quickly formed a friendship while she was doing the exam. When the Radiologist came into the ultrasound room, I could tell by the look on his face that it was not good news. As he explained what he saw, the ultrasound tech’s eyes watered along with mine. I knew what it was when I found the lump, but it’s different to hear it out loud.
Next stop–needle biopsy the next day! I watched the screen while the female Radiologist did the biopsy. It was actually pretty cool. First, they numb the area, then they use this rather large need-type thing that they insert into the tissue. They load it with a thing that shoots into the tissue and collects a sample. She did this several times. I was glad I could see it all. I’ve worked in healthcare all my life–I’ve seen all kinds of surgeries, all kinds of terrible things in Emergency Departments. I’ve seen people die of terrible accident injuries. I’m not going to tell you that I’m immune to these kinds of things, but I am not squeamish about medical procedures. So, watching the needle biopsy was just another procedure that I got to see. Next was the MRI to make sure there was no metastasis to other sites in my body. Luckily, the metastasis was limited to my lymph nodes at the time.
It took forever to get the pathology reports back. My tumor was actually a cluster of tumors–both invasive ductal and invasive lobular. The pathology indicated it was a fast-growing invasive cancer that required immediate surgery, along with chemo and radiation therapy.
My daughter-in-law took me for my surgery. During the pre-surgical consult with the Anesthesiologist, I challenged him to keep me from being sick after the surgery. I always had terrible after-effects of anesthesia. He promised me I would be fine, and I was! Kristi took me home and offered to stay (she said the surgeon told her she should), but I was fine–not sick or fatigued. It was pretty amazing!
After the surgery, the complete pathology report of the tumors was even more curious. My tumors were surrounded by many tiny tumors–something they evidently don’t see all that often. Again, they said this was highly invasive and fast-growing and even though it appeared that the surgeon had excised the entire tumor and enough marginal tissue to be as certain as possible that it was all gone, they could not be certain.
Because of the nature of my tumors, my oncologist decided to have the tissue samples sent to two other pathologists to confirm the severity so she could determine the best course of action. Both confirmed the findings of the original pathologist. Chemo and radiation were required.
My fist chemo drug was Taxotere with Cytoxin (remember, toxins are poisons?). In typical me fashion, I did my research on Taxotere. It is made from Mayapples. Periwinkle, Chinese Happy Plant, and Pacific Yew. All beautiful plants and flowers. I gathered pictures of them on my tablet and intended to look at them while the poison they made was pumped into my body.
I took my Compazine in the morning. My daughter-in-law picked me up and took me to the Oncologist’s office. They have an infusion room there so their records are all in one place and they can keep track of patients’ blood levels, etc.
Kristi went in with me to see how long they thought it would be. She was going to Chic-Fil-a to have some lunch and read in the shade of a tree. They told her it would be about 3 hours.
The nurse took me back to the infusion room with the big, comfy recliners. I had my tablet, and I showed the photos to the nurses. I told them that these things that are so beautiful could not do me any harm. Boy, was I wrong!
My nurse inserted a “butterfly” needle in my left arm and took a blood sample to make sure I had adequate levels to be able to have the infusion. All tests were normal, so it was full speed ahead. She attached the infusion tubing to the needle and started the first part of the routine. This included an anti-emetic (to keep me from being sick–works in concert with the Compazine), and the Cytoxin. After the Cytoxin bag was empty, she hung the Taxotere bag and started that infusion. I focused my eyes on the photos on my tablet.
After what seemed like about 30 seconds, I saw stars. You know how in the cartoons when someone gets hit in the head they see stars? Well, I saw stars. After a few more seconds I felt severe nausea. As I looked for something to catch the contents of my stomach, I started to feel a heavy weight on my chest. I couldn’t breathe. I couldn’t move. At least the nausea was gone. I wanted to yell for help, but I couldn’t. Then, I started to burn up from the inside out. The heat was incredible. I could feel my whole body exuding sweat.
At this point, I realized I was heading for death. The funny thing is that I wasn’t afraid. I thought if this was what death was like it wasn’t so bad. I could feel myself slipping away. My eyes were closing, and I couldn’t hold my head up. The husband of the patient in the chair beside me was blocking the view of my chair from the nurses station.
At some point, I heard another patient yell, “She’s really red!” Immediately, every nurse was at my chair. They disconnected the infusion tube from the needle and pumped something into my veins that stopped the reaction. I don’t know who that patient was, but she definitely saved my life that day.
In a matter of seconds my Oncologist and her PA were at my side. Dr. M said they hadn’t had a reaction to Taxotere in over 6 years, and that was not drastic. She said she never saw this kind of reaction to that drug. I reminded her that I told her early on that I don’t react to drugs the same way other people do. She said that she remembered, but she didn’t think it was SO bad.
The PA sat beside me for the rest of the day. Kristi came back after about 2 hours and was surprised that I was already done. One of the nurses took her aside and explained what had happened and they were trying to figure out what to do now since it was obvious I couldn’t ever come close to Taxotere again. She explained that we couldn’t leave for at least another hour.
They scheduled an appointment for two days later to discuss treatment options. Dr. M told me that the best option now was Cytoxin and Doxorubicin. (I discovered this is a drug made from a soil fungus–how exciting…, but I did find photos of it.) She explained that this drug is hard on your heart, so I had to have echo-cardiograms several times before, during and after treatment. I told her that I didn’t think I wanted to risk another near-death experience. She said I was the one that had to make the decision. I asked her what she would do if it was her or a member of her family. She asked me if there was something I really wanted to be able to do in the years ahead. I told her I wanted to see my grandson grow up. She told me she would definitely have the chemo, and she would recommend it to a family member. She told me about a patient with a much less-invasive cancer who refused treatment after surgery. A year later she was back, but it was too late. There was nothing they could do but try to make her comfortable when the pain got too bad. I agreed to give it a try.
So, this was going to just be about the drug that tried to kill me, but I think I need to give you the rest of the story. It might help you or others going through this to know what can happen. I have no idea if some of these things are because of the Taxotere. I suppose some could be. I will probably never know. I do know there is a class action law suit over this drug, but I’m not the suing kind.
Doxorubicin, is a very thick red concoction that has to be infused through a port with a big fat long syringe after the anti-emetic and Cytoxin are infused. That meant I had to go back to surgery and have a port inserted. A friend from work took me for this surgery. While we were waiting, we helped the nurse enter all of my medications–after all, we were the electronic health record experts! That helped to make the time go fast, and relieve some of my fears. New Anesthesiologist. I told him that I wasn’t sick after my last surgery and challenged him to perform the same miracle. He did. I was so un-sick that I walked across the street to my Oncologist’s office after I woke up.
I managed to get through my course of Chemo and started Radiation right after. It was 8 months after my diagnosis when I finally finished all the treatments. But I survived, even though I almost died that day. I still take chemotherapy drugs – Letrozole. At first they told me I would have to take it for 5 years, but recently they said I may never be able to stop taking it. That makes me sad. There are many side effects, including bone loss (I now have osteopenia), and constantly being hot. My PCP asked me during my last visit why I wasn’t wearing socks–it was in the 30’s that day. I told him I am never cold. And, on top of that, I have neuropathy in my ankles and feet, so I don’t have much feeling there.
I’m not looking for sympathy…I’m telling you this because cancer patients and survivors may look OK and act OK, but they may be dealing with many things that you can’t see. Please be patient and encouraging with them. They need it!
So, I’m going to go through the list of things that I didn’t have before, but have now. Osteopenia, essential tremors that make small motor skills next to impossible, neuropathy in my feet and ankles that affects my balance and causes me to fall a lot, arthritis that is sometimes debilitating (if I go for a walk one day, I can barely move the next), and heat that is sometimes unbearable–at times it wakes me in the middle of the night and I’m covered in sweat. It’s not hot flashes–I went through that 46 years ago when I had to have a total hysterectomy. My scalp and back also itch–not all the time, but most often in the night. I wake up scratching my head, and I keep a back scrub brush on the floor beside the bed, and it comes in very handy! My allergies are worse. Foods that I used to love taste terrible to me now. In fact, I don’t really like to eat–nothing tastes good. I just force myself to eat at least twice a day because I know I need to. I just don’t want to. The only thing I really enjoy is lemon sorbet. Don’t know why… I never ate that before. Most people gain weight after treatment–I lost 30 pounds and have never gained it back. I was thin to begin with, so that doesn’t make my Oncologist happy. She is constantly nagging at me to eat more. My eyesight is worse–actually, the interesting thing is that I didn’t need glasses at all during my chemo treatment–it changed my eyes. It was great to drive without glasses. Not any longer. I have short-term memory loss, difficulty processing and retaining information, depression and anxiety, poor self-worth, very little enthusiasm for anything but being outdoors and spending time with my grandson. I get frustrated easily, and I lose my temper like never before. I also have recurring eye infections for no apparent reason–my eye doctor says it’s actually pretty common after chemo. My skin is incredibly dry. I use tons of lotion. But I can’t use lotion on my face–it causes things called millia, and it makes it look like I have teen-aged skin without the redness. I have to use “serum,” and even that causes these things, although not as bad as lotion.
On the bright side, my hair grew in pretty well, and it’s not as gray as it was before–I don’t color it any longer–no need. There are gray hairs, but they blend in with my regular color. My eyelashes fell out and grew back in several times. But my eyebrows never grew back. I tried to have “permanent makeup,” but after the first session I never went back. It hurt! And I had enough of things that were hurting. I can’t wear makeup because of the skin problems, so I look like I have no eyebrows (because I don’t).
OK, that’s about it. Please try to understand what cancer patients are going through, and the things that survivors deal with daily. Some don’t have chemo and radiation, some have one or the other, but not both. But no matter what, cancer is a diagnosis that is difficult to live with. I have a friend who was cancer free for over 10 years when it came back with a vengeance. You never know. PLEASE give them all the love you can, even though you may not be able to see the scars or the pain.