June-July-August- September, 1998
Well, many have asked so many questions about how chemo "feels" with other queries, so I thought I would put it down in print. First, going to the oncology department is a rude awakening. There are all ages, sizes and appearances. Not many people look too happy and many look unhealthy. Very different patient population than in other doctors offices. The staff is more than accommodating, very kind and caring, never rushing anyone.
First, you go to visit with your oncologist to review labs and any other tests that may have been ordered. My oncologist is delightful and so informative. If you ever have to choose someone, remember the name Dr. Hui. She always takes all the time needed to attend to you and any questions you may have. She seems thoroughly thoughtful as you discuss and question recommendations. She is a star. After your chart is reviewed and vital signs, you sit and wait for the chemotherapy nurse to call you in.
You are placed in a chair similar to the ones in a dentists office, only not quite as intimidating. There are K-thermia (heating pads) on each arm to entice your veins to relax and be punctured. The oncology pharmacist has already read the orders for chemotherapy and your drugs are waiting for you, all labeled and in IV bags or syringes, in various colors. There are dozens of different cytoxic agents used in chemotherapy. Depending on the kind of cancer, the size of the tumor, the kind of tumor, lymph node involvement, estrogen receptors site, carcinoma in situ and other organ involvement, you will have your very own recipe of chemotherapy treatment. It may or may not involve receiving radiation as well, and possible pill therapy following the IV therapy. So many ways and dosages to kill those little creepy cells!! They have crackers, hard candies and drinks available for those that have an appetite. They review your orders and the nurse begins the very unpleasant chore of looking for a vein. Working in the recovery room, where we start IVs all day long, I know what it can be like to be on both sides of the needle. Of course, I prefer to be the sticker and not the stickee! And, like many of my patients in the recovery room, pre-op area, I have lousy veins. The first time I went for chemotherapy, I had to have my friend from the recovery room come and start my IV. This second time, the chemo nurse did get in on the second attempt. I felt bad for her. Of course, in pre-op, we may use lidocaine with each IV start to help with the pain, but with veins like mine, lidocaine is not always helpful, so usually, I don’t get it. No pain, no gain.
Of course, there is the localized pain and stinging with the IV initially. That does subside. When the solution begins to flow into the veins you may or may not feel coolness from the medication, being room temperature. With one of the medications, Adriamycin, I am getting, there is some localized redness that scares some of the nurses. I am so pale and have sensitive skin , it all shows. It takes about an hour for it all to take place. The first medications that are given are to counteract some of the more undesirable effects of the chemotherapy. The Adriamycin also turns your urine and tears red, rather rusty in color. I have seen the urine change, but not my tears. It lasts about a day and a half. Your skin also becomes flushed and you may have a redness all over. You become more photosensitive and must avoid the sun. This was very hard for me initially. We do have a swimming pool and I LOVE to swim and had been swimming on a daily basis. Being a large woman, and exercise being important, this is one exercise I hate to omit. I cannot replace it with bike riding--avoid the sun or walking for the same reasons. I am also receiving Cytoxin. Toward the end of the infusion of Cytoxin, my eyes begin to sting and my nose feels stuffy and stingy also. That subsides after several hours.
After, my first treatment, I felt great, until 48 hours later. Then BAM!! I just had a generalized feeling of sickness. UGH! Even brushing your teeth makes you have the urge to wretch. The antinausea medicine had worn off and I could tell. I had other drugs to take, but I didn’t like the side effects they commonly produce, so I didn’t try them. Then I felt so nauseated! I ate one light meal each day for 4 days and drank plenty of fluids, Pepsi, to ensure no significant weight loss! I never threw up. As a fat woman I refused to give up whatever wonderful calories had passed through my lips!! HA! I felt very tired also and slept a lot during those 2 days. The weakness that accompanies the post chemo nausea is just as frustrating. One becomes very tired of spending nearly a week in bed every three weeks. The length of chemo seems to take so much time and consumes your thoughts as you try to plan to have somewhat of a normal life. I did go back to work on the 5th day and felt okay. I still had waves of nausea. I was okay as long as I didn’t have to smell food. If I could heat something up in the microwave, and minimize the aromas of cooking, I did better. Sometimes you want rice, potatoes and pasta and sometimes, you want strong foods such as Mexican. A week after the first treatment, I felt fine and not quite so tired. The second time Dr. Hui gave me some additional anti-nausea drugs to try. I felt as if my bedroom night stand looked like one you would see on television, of an old person, or someone deathly ill. I have so many different medications for so many different symptoms and I do not enjoy this. I also have kept a stainless steel basin handy for those unexpected occasions.
Another common side effect of some chemotherapy drugs is alopecia, hair loss. According to the literature, it takes 2-6 weeks to occur. Of course, with Adriamycin, my favorite medication, complete alopecia is to be expected. Less than 2 weeks after my first treatment, I noticed my head itching terribly. I scratched and my fingers were full of strands of hair. I thought ,"well, maybe I’ll just experience some thinning." The next morning, I knew it was more than thinning. As I first brushed my hair, so much came out that I filled the toilet with hair. I went into the shower and had to keep moving the hair with my feet to keep it from clogging the drain. Then, as I began to blow dry my hair, I had to stop 3 different times just to empty the hairbrush. There was hair all over the bathroom sink, rug and floor. I knew I couldn’t take this for the days to come. I had plans to have lunch with a friend and to go to Sloughouse to buy fresh corn. I wanted hair long enough for that. We had a good time, but Sloughouse had no corn because of El Nino. When I got home, I called my friend to please cut my hair or shave my head. She said to come on over . We decided to just cut my hair very short. What a shock! But it beat being bald too quickly. Then less than a week later, I became all but bald. This had a big effect on Troy, who was quite concerned that his mother, while needing the appropriate treatment, did not want me to "look like a dike." Betsy was in Croatia and would not be home until after the bulk of hair loss occurred. When she came home, it took a short while and then she was fine with my new look. She wanted to know if my head hurt, wanted to know if it was okay to touch my head, etc. That wanting "to touch it" seems to be a common reaction. While hair loss is the least of my worries in most ways, it probably has produced the most revealing emotional side effect. No one knew, unless I told them, about my not having breasts, but no hair makes you an open target for questions that I may or may not be prepared to answer. There are good days most of the time, but occasionally, there are deep days. Those days, no matter who you run into, the tears come and it is unsettling for both you and the one you are standing face to face with at the time. They are at a loss for what to say while you scramble for a tissue and apologize for making them feel badly. You search for words to come quickly because, no one has much time and you both feel so uncomfortable. You want them to know that you are really doing quite well but the fact remains, you would have not chosen this for your life. You are still grieving at the changes you have had to accept and at the same time you are learning to adjust to all the changes and are so grateful for all that is so good and so wonderful about your life, in 45-95 seconds, as you pass in the hall, leave a meeting, walk into work, meet at the grocery store, see each other at church. Terry and I have spent a significant amount of time together during all of this and this has had to have affected him as well. He has been so supportive and understanding that it is difficult to put into words. He makes me proud and he honors me, if that makes sense. You wonder about other hair--the hair on my legs isn’t growing either, or my arm pits. Some tell me, that while the hair on your head comes back with a gusto these areas do not! No more razors. Yea!!! My nose hair has all but disappeared as well. When you blow your nose, your nostrils stick together momentarily. And yes, the pubic hair and hair around your rectum becomes very thin as well. I won’t go into the details of that issue, just use your imagination. I am having fun wearing different hats and bonnets. I do not want a wig, too hot and just not me. I don’t care to have things on my head anyway, never did. Just wearing these hats and bonnets bugs me. But I don't want to be a shining light wherever I go either! And sometimes, people don’t know then, about chemo, and cancer related to me. I can hide. I am getting braver and cry less and less each passing week. I am going out bald more often than not. After my last chemo, Christie, my dear friend who has had to endure my changing mood, shaved my head completely. I want my hair to grow back evenly. She did a great job, only missed 2 single hairs. And I don’t look like Alfalfa--it’s too short! Boy am I ever saving money on shampoo and time in the morning blowing and brushing my hair!
The very good thing about the hair loss, is that hair is composed of fast growing cells and they are being killed. So, I know that if I have any residual cancer cells, which are also fast growing, the Adriamycin and Cytoxin are working to stop and kiss them good riddance. In spite of that, the loss of my hair seems to have the greater impact on me. I hate having anything on my head. Hats make it hotter, in the summer 100 degree heat, I’m whining. I have discovered that I am more vain than I had thought. I am closer to tears more often than when I initially heard about my diagnosis. I believe, and please understand that this is a journey of self discovery that I am on right now, no end result just yet, the reason it is so hard to be bald is a matter of privacy. When I had been told I had breast cancer, no one could tell by looking at me that anything was wrong. Part of me wanted to scream it to the world, stop doing what you are doing! I have just been given devastating news and please show some respect by screaming with me! Women are still dying at an amazing rate from breast cancer. Their bodies are being mutilated (surgery) and we are going about life. But I also loved it that people stopped me in the hall to tell me the latest joke about the parrot in the freezer--life is to be enjoyed and lived. Life is not to be stopped and watched as it passes you by. Sometimes we need to have little tantrums, like screaming at the world. After my second surgery, no one knew that both of my breasts had been removed, unless you were one of the ones I happened to show them to. I was amazed that it just didn’t look "that bad." People would still tell me jokes about the guy out on the golf course, etc. Now that I am virtually bald, the look I get is not of recognition and a smile, "oh, by the way," it’s of shock, "Becky, is that really you?" of deep penetrating "what’s going on with you?" Life and death is in the hands of our Lord. I never want to make light of life and death. But I sure do like seeing the funny moments in living. This is just so serious! And the conversation evolves too much about me and my mortality. I like attention like the next person, but this is not the stage I really want to be on. I’m more uncomfortable with focus on myself than I ever thought possible. This focus isn’t about the dinner I cooked for you, or the gift I bought you or the decision I made at work regarding a patient care issue. This leads peoples’ thoughts to examining me in all different aspects of my life. I don’t mean judging. I can’t see their thoughts except to know that it’s deep and quieting. It’s difficult to direct the conversation back to the joke about the blond on the railroad tracks. People have questions and I want to answer them and help them deal with this too. I want them to know that I am going to be more than fine, no matter what happens to me. I am going to live eternally. I’m sure someone can make up a joke about that! I can no longer choose what and when I want to talk about what has happened to me in the last couple of months. I have always been so open, direct and honest. I don’t want that to change now. It just catches up with me. I’ll talk to 20 people and tell them each my story and all that has happened and then, the 21st person gets a bag full of emotions. I break down and cry and feel just emotionally spent. It is the strangest thing. It has nothing to do with who the person is or what they have said or where we are. It has to do with the cycle of strength, or lack of it or the rollercoaster that I am on.
So being bald, brings the number of 20 people to talk to up more quickly than before baldness. I had no idea this would have this kind of effect on me.
I am all done with my chemo now. Each of the doses felt different. The worst was my first dose. Everyone is different though. I probably felt the weakest after the last dose. I was walking to the bathroom one night and I just felt as if I had not enough strength to walk the few steps from my bed and back. I did make it though. I felt sicker longer the last time, but not as intensely as the first time. I am so glad to be all done. I will have my hair back by next year. I had a total weight loss of 5 pounds! The ones that need the secondary benefit of weight loss don’t get it and the poor souls that need not loose an ounce are devastated with weight loss. It makes no sense!!
I saw the oncologist before the second treatment. She gave me a copy of the pathologists’ report from Stanford. I was so delighted with the diagnosis of medullary cancer in May, but it seems that mine is atypical medullary carcinoma, with the characteristics of both atypical medullary and a high grade infiltrating ductal carcinoma. Of course the statistics are not as good with this news. My course of treatment would be no different than it is now. This kind of took the wind out of my sails. I wasn’t quite as chipper the next couple of days. I just needed to assimilate all of this and remember who is really in charge no matter what those slides of cells showed the honorable doctor in San Francisco.
Recently, at my place of employment, too many of us have been made aware of our age and some with devastating illness such as mine. I have been asked so many times why this has happened to me and why that has happened to others. I do not have the answer, of course. But what I do know is that none of us has any guarantees in life. No ones life is without turmoil, illness, financial worries, job uncertainty, or some personal loss. What I do see happening for me is an opportunity to make my life count in an intense way, it may not have without the diagnosis of breast cancer. That is to tell others about the saving grace of Jesus Christ and the opportunity for eternal life each of us has. It is an opportunity to tell others that, if they take the opportunity to think about God and His son and what they can do for that individual, that my having had breast cancer serves a purpose that honors me. That I can be used to direct peoples’ thoughts toward God humbles me. I want so much for others to know how much God loves me and each of you. He wants and waits to have a personal relationship with each of us and will only make our lives fuller because of His love and truth that contrasts a world full of hopelessness and despair. He alone has the answers for why things happen to some and not to others. Those answers may be hidden from us at different times in our life. But to those that trust Him, we will some day learn the answers to all of lifes’ questions.
I suppose that another amazing thing about all of this is that I am going through the process at all. As a nurse, years ago I made up my mind that I would NEVER go through what I am doing right now. I have had the humbling honor to be with so many people as they are leaving this earth, as an ICU nurse. In my observations, I decided that quality of life is better than quantity of life. If had received a less than favorable diagnosis, I decided that I would not alter what time I had left on earth by spending it on surgery and chemotherapy, feeling miserable for days at a time and crying and moping. I suppose I felt that you should just live your life and then just die your death!! But then my situation arose. It is not a terminal diagnosis. But WOW do I ever want to live!! I can’t tell you the drive that is there!! It is the most incredible thing. This really is such a nasty pot hole in my life. I am going to try to come out of the pot hole and keep on that highway of life, whatever my life is that God has given to me. It is mine. That is the key that I so overlooked. I only have ONE life. Whatever that life is, I want it! I guess I had looked at quality vs. quantity as contritely as one could say, "If you are poor your life has no quality and therefore should be of limited quantity. Only if you are wealthy you can truly enjoy life as it is to be enjoyed and it should be long." As absurd as that statement is, unfortunately, we as human beings just say that over and over and over. Too easily, we overlook the suffering, the poor, the uneducated. They are to be taken care of, set aside to ease our minds. Never do we consider integrating them into our own lives. It would be such an intrusion and much too costly. But who are we to judge their lives as being without quality? I am rambling again, in areas that are too deep for me to go to today. Just please know that I am still here and am doing very very well. I have so much to be thankful for and one of the things is you. Keep me in your prayers as God brings me to your mind. I will keep you in mine and trust Him for all things.
Love and hugs,
Becky Richards, R.N., SNIII, September, 1998