#StoriesOfHope Introduction First off- I want to say…this story is not about Breast Cancer. It’s about fighting your way through the Breast Cancer jungle! It’s about dealing with a life threatening disease. It’s about coping with all the doctor appointments, procedures, and loss- Loss of dignity, loss of job, loss of finances, loss of control, loss of “yourself”. But most importantly- it’s about survival. I am not a medical professional. I am not an expert on Breast cancer. But I have lived with this disease for over 5 years. My hope is that this story will help you cope with your journey. My goal is for readers to realize that others share similar feelings as well as similar challenges. You are not alone. My Story Cancer! Me! How can this be? I sat there reflecting on myself; 44 years old, active, healthy, never smoked, didn’t drink or party. A mother of 5 children. No one in my large immediate family had any signs of cancer. Yet here I was, sitting across from one of the top cancer doctors in the area confirming my worst fears- “yes you have cancer”. A few months prior, I noticed a small pea size lump surrounded with a red rash on my right breast. I own a small horse ranch-I thought maybe a spider out in the barn had bitten me. The rash did not go away, and started to get larger. The small lump was still there. I felt great- not sick in any way. I just had a monogram a few weeks prior. I really did not think it was cancer but decided to see a doctor just to make sure. The doctor diagnosed an “abscess” and prescribed antibiotics. I finished the medication, but the redness and lump were still there. While taking a shower one evening, I noticed large swelling under my right arm. I immediately called my doctor. The doctor stat ordered testing and stat ordered an appointment with the cancer doctor. I think I knew at this point, but still held hope. Now here I was being told that I had Inflammatory Breast cancer at stage 3C. I needed to immediately start chemo, to stop the cancer from spreading. I am glad that I called my doctor and had it checked out, instead of waiting to see if my symptoms went away. I am glad my doctors realized the emergency and stat ordered the testing. After 4 months of weekly treatments, I had my first mastectomy. After healing, I started daily radiation. After I healed from the daily radiation at the highest level possible, I went through my second mastectomy and reconstruction. I had a 15% chance of survival and I am still alive today after over 4 years of daily battle. Never give up hope. Never feel like it is not worth the fight. Always believe you can win this battle Getting “the news” No one knows how he or she would react to the news that they or someone they love has a life threatening disease. But I believe there is no right or wrong way to react. It’s ok if you cry, its ok if you try to be strong, and its ok if you choose to not believe and want second opinions. I remember when the Doctor told me, I tried so hard to be strong. My husband and I talked it over with the doctor and as soon as we left his office, I went into the bathroom, sat down on the floor, and prayed to God for strength. Fighting back tears, and fighting a fear that wanted to consume me, I decided that I needed to make a choice- give up now or fight. I decided to fight. I am not going to say it has been easy- it has not. But through it all, I believed that I could win. I believed that I could make it through whatever treatments I had to go through. I believed that my family and friends would be there to support me. I believed that God was with me. Positive Attitude The Internet is a wonderful tool. I strongly believe in becoming educated on your illness, but DO NOT become obsessed with it. It is so easy to sit on your computer and research for hours. But in doing that, you are reading over and over negative information. It is hard to maintain a positive attitude if you are constantly reading information that you feel is negative. The same thing goes for talking to friends and family. I use to tell my friends that they were not allowed to cry around me- if they felt the need to cry when talking to me- then they had to leave the room. If they wanted to tell me about someone they knew who had Breast Cancer- then please do not tell me that they “died”. That information or behavior is not good for your mental well-being. Surround yourself with positive people, and positive information. Read inspirational books. It’s hard sometimes to maintain a positive attitude when dealing with such a horrific situation, but I believe that a positive mental attitude helps you to heal. Doctor Appointments It amazed me how many patients would miss their doctor or treatment appointments. I understand that they are sick. I understand the treatments have made them weak. I understand they have been to the doctor’s office three times in the past week. With that being said-DO NOT MISS YOUR APPOINTMENTS. You are in a life battle. You have to show up. I use to think that my body was fighting a battle inside me. The chemo, or radiation, or other treatments I thought of as a renewal of my army. I know this sounds crazy but it helped me to stay positive. I also would pray while the chemo or radiation was being administered. I would Thank God for his healing through these tools. I had many well-meaning friends that would tell me about some herb or natural treatment that was guaranteed to heal my cancer. I know they meant well, and it is a personal choice to try this or not. But I believe that these people are not medical professionals. It is great to use herbs and such to prevent cancer, but when you have been diagnosed, you do not always have the time to “try” these options. If you believe there is something out there that will help you, please discuss it first with your doctor. It may affect the medications that your doctor is prescribing for you. I think it is important that you have faith in your medical staff. Your life is very well in their hands. I honestly do not know how my doctors do it. They have always made me feel like they were doing all they could to help me through this challenge. I felt they always had my best interest at heart and went the extra mile to do what they could to ensure I received the best possible medical care. I believe they treat all their patients in this manner. But if you do not feel your doctor or their staff acts in this manner, you need to consider your options. Stress is detrimental in healing, and if you feel you need to question everything your doctor is doing or not doing, then this is adding unnecessary stress on you. Chemotherapy The first words out of my mouth when I was told that I had cancer were “when can I start chemo?” In my ignorance, I thought this was the cure all for cancer. I was scared because all I knew of chemo was what I had seen on TV. In my mind, chemo meant being bald, laying in the bathroom too sick to move, never spending time with my family. Never riding my horse, or playing fetch with my dog. Being too weak to do anything. I am pleased to say; for the most part this did not come to pass. When I was diagnosed, I was at an advanced stage of inflammatory Breast cancer. Inflammatory breast cancer is the most uncommon but most deadly form of breast cancer. My doctor decided to start me on weekly treatments and see if I could withstand the treatments. One week I would have both Hercepton and Chemo, and the next week, I would just have Hercepton. Then Hercepton and Chemo, and so on. I recommend taking someone with you to your treatments. Not that you are going to be good company- they usually give you something right away to relax you. But you need to take the anti nausea medication right away- BEFORE the nausea sets in. So someone else needs to drive you home. In the four months that I was given chemo, I only became nauseated two times. I was weak at times; I would usually sleep the first day or two. But after that, I was able to get up. I was able to do things with my family. I even was able to ride my horse- although my family usually had to saddle her, and lift me on. Even if I just rode around at a slow walk for five minutes, I would feel better afterwards. Yes-I did lose my hair. Pre-chemo I had hair that was down to my waist. I loved my long hair. I lost it right away. It was hard. I cried. I thought my younger kids would be grossed out. But no one cared. My family still loved me. My kids thought it was cool that I had a wig. I usually only wore a baseball cap because the wig bothered me. It was different, but then my hair grew back. It came in wavy where before it was straight. One of the hardest things about being bald was how strangers would act. Friends and family were fine. But strangers out in public- they did not know how to treat you. They were never mean to me, but they just did not know what to say. It was an eye opener to me. Now I wonder if pre cancer- I was like that. Did I act nervous around someone going through chemo? Did I not look them in the eye? Did I not want to stand next to them in line? Did I not know how to talk to them? I am not sure, but I do know that post chemo, I will not act like this. There are many side effects of chemo. There is what I refer to as Chemo brain… when going through chemo you may find that you are forgetting some things, or you say the wrong thing. Do not get too upset with yourself- you have not lost your mind on top of everything else. This will go away. The other condition is neuropathy. I still get a tingling feeling in my feet when I stand after sitting for a period of time. But after you move around some, this goes away. Although these conditions are not what we would choose, it is something that you can still maintain a normal lifestyle with. Surgeries No one knows how they will react to being told that they need to have a part of their body removed. For me, the choice was easy, because I believed I was in the middle of a cancer war, and this was one way I could win this war. I have inflammatory cancer, which is an extremely aggressive cancer. The decision was made to remove both breasts. In addition, I needed to have my lymphoids removed under my right arm. Even though I was ok with the decision, nothing prepared me for seeing my body with a portion of it removed. The doctors will try to prepare you by showing you pictures, and discussing it with you, but to actually see your body like that was hard for me. But it has gotten easier with time. My relationship with my husband stayed strong, he loved me anyways. But I felt less a woman at times, embarrassed with how my body looked. My reconstruction has been a slow process. For me, I had several surgeries. The loss of my “life” was hard to deal with. The doctors would not allow me to do things I loved- ride my horse, pick up my kids, and do anything physical at times. I had a hard time dealing with having to slow down. I felt guilty that everyone had to do so much for me. But they really wanted to help. It is hard for the people who love and care for you. They want to help but they do not always know what to do. And the one with cancer does not want to ask for help because we are use to being “superwoman” and doing it all. But stay strong, this too will pass. You need to focus on getting better. Breast cancer may take a part of you physically, but it does not change whom you are inside. It cannot touch you there without you allowing it to. Radiation When I started radiation, I did not know what to expect. After doing weekly treatments through chemo, I was afraid of hearing the radiation would be daily. Would I be too weak to do anything? All the fears I had before starting chemo came rushing back. But although I would get tired easy, it was not unbearable. I drove there and home myself, which for me was an hour each way. I was able to stay up and do things. My skin did burn; in fact the focus area was jet black by the end of my treatments. It remains a reddish color still to this day. I am sure it affects everyone differently, but for me, this treatment was not too difficult. Loss Of Job I had worked for my job for over 25 years when I was diagnosed with cancer. My supervisor told me to not worry- take whatever time I needed to get better. I truly believe at the time, he meant it. I tried at one point to return to work after radiation. I became so weak, and just was not able to do the work that was needed in my level of position. My doctor felt I needed to be off work and even though I felt I needed to work- the true decision was to choose between my life and my career. I went back off work, and after several months, my employer contacted me and said I was being terminated for taking too much leave. I was hurt! Too much leave- I am fighting stage 3C cancer with a 15% chance of survival, and they thought I was taking too much leave? I did not think that the 18 months of doing chemo, radiation, and several surgeries was unreasonable. All I could think of was all the times that I had worked long hours, missed something in my personal life to complete a work project, or such and here they were telling me that I was terminated while I was in a war with cancer. But the truth is, I was not able to go back to work. My degree of cancer automatically qualifies for permanent disability, and if it were not for my employer terminating me, I never would have applied. I would have tried to go back to work, even if I was not up to doing the job anymore. When I should have been doing everything to get better, I would have been pushing myself at my job. It is for the best. Yes- I feel the cancer has robbed me of my beloved career. Yes, it extremely hurt us financially. But that is not the fault of my employer. I am not able to work at a level needed to perform my work task. No- it is not fair. But cancer is not fair. I try to look at the positive. I am able to spend much more time with my family now. Being on permanent disability, I am at home more, spend more time with my horses, and do not have the stress associated with working. Not everyone dealing with breast cancer will lose their job. But if you do, it will be ok. You have ended a chapter in your life book. Be excited to start your new chapter. Finances I mentioned in the last chapter that I had lost my job due to needing so much leave for treatments. This had an impact on our finances. In addition, we were putting out money on cost of doctor appointments, medications, loss of my husband’s salary on some days, cost of wigs, etc. On top of dealing with having a life threatening disease, I had to deal with calls from my creditors, wondering how we would make our monthly bills and the guilt. Guilt that is was my fault that we were having financial difficulties. It is NOT your fault. You did not choose to get cancer. You did not do something that caused you to get cancer. There are many organizations that will help you during treatments. Contact them because you deserve the help. They will help you with gas, medical co pays, wigs, counseling for you or your family, housekeeping, etc. But they will not contact you. The doctors or hospitals will not contact them for you. You need to reach out and ask for the help. If you do, there are many organizations waiting to help you. Cancer affects the entire family When I heard the news that I had cancer, my husband was with me. He stayed strong. He asked the doctor questions, never showed any emotion. But it was tearing him up inside. He felt he had to be strong for me. My older kids were old enough to understand, the younger kids only knew I was sick and would lose my hair. My friends rallied around me. I was diagnosed with cancer in November. My birthday is in February. I can tell you I had more people- both family and friends- in attendance at my birthday party then ever before and since. I knew it was because they thought it would be my last birthday. I saw humor in this, and assured everyone that I was going to win this battle. It is easy to just focus on the one who has the cancer, but the entire family around that person is going through the battle with them. Cry together if you need to, laugh together too. Kids understand more if you explain to them what is going on. Cancer can either bring your family closer together or drive you apart. Keep communication open. Anger It’s ok to get angry at your situation but do not let that anger consume you. You are right, it is not fair. Cancer picks on all walks of life- rich/poor, healthy/unhealthy, old/young and so on. I did not feel the anger when first diagnosed with cancer. I went through an anger period after a few years. When first diagnosed, my entire focus was on winning the battle- just on surviving. But after about 2 years, I started focusing on how much my life had changed. How I could not ride my horse like I did pre cancer-I was not a top competitor any longer, how my arm was not as strong after the surgery, how I had lost my career- something that meant very much to me, how much my body was not normal anymore and never would be. But after a few weeks of feeling this way, and praying to God for guidance, I realized that I was focusing on this all wrong. Yes- everything I mentioned was true. But I am alive. I am able to still ride- still compete, and still enjoy my horses. Not working has allowed me more time with my children. I do not miss their programs. I am here when they get home from school. I miss my career and I am sure I always will, but I am ok with staying home. I am currently going through some reconstruction to help me feel better about my body. I do not regret that I made the decision to remove any area that the cancer could be active in. Going through anger is just a normal mental healing. But do not allow yourself to dwell in self-pity. You need to stay positive, and continue your fight. Accepting help This was very hard for me, and still is to this day. I am a very outgoing person who was use to helping others more then others helping me. Some would say I have superwoman syndrome but I believe most woman do. Having to go from that lifestyle to a lifestyle of others doing just about everything for me was difficult. Not being able to do stuff for my family was the hardest. But you need to focus on winning your battle. Ask for help. So many wanted to help me but were unsure what to do. I finally realized that I needed help. I remember one of the horse show circuits that we show horses on contacting me about doing a benefit in my honor with the proceeds going to us to help out financially. They were afraid that I would be offended by this but still wanted to offer. I am so thankful to them for doing this. Not only did it help us financially but also seeing everyone that day, coming to a show in my honor to help me was very rewarding mentally. My teenage daughter would drive me weekly to my chemo appointments and sit by my chemo bed doing her homework while I received my treatment. My oldest son no longer lived at home, but would always find the time to come by and visit me, and I always felt better after he left. My youngest three kids would color me pictures to hang by my bed, showing me how much they cared. My husband took over so many of the daily chores that a woman in the home does. My parents were so supportive of me, always remaining positive that I could make it. My sister made me a beautiful quilt. Friends would mail me cards that I would sit and read for hours on end- just to feel their love at my time of need. One friend would call me and talk- making sure I was still ok. My other sisters would help out watching the kids. Several cancer organizations helped me with financial help- gas cards, grocery store cards, store cards for Christmas gifts, free wigs, and the list goes on and on. It is not always the big things that you need to ask for help with. Sometimes it is help to maintain a positive attitude, sometimes help with knowing you are loved, and sometimes help with the kids. I remember my sister in law recently saying what a strong woman I have been through it all. I am strong when I need to be, but I also have my moments. I cry. I feel sorry for myself. I get angry. I feel like this is all my fault- I must have done something wrong to get this. Take a few minutes to feel this way, then jump off that pity wagon and focus on surviving. In closing Breast cancer has changed your life. It is something you will have to deal with for a long time. It has taken things from you that you were not ready to give. But through it all, you choose your attitude. It cannot take that from you. You choose how it is going to affect you. Stay strong. Surround yourself with positive people to help you maintain a positive outlook. Choose to do things that you can do, instead of focusing on what you can’t. Try not to allow your bed to become your best friend. Communicate with your loved ones. Get close to God; ask him for strength, courage, and peace as well as healing. Believe in yourself. Believe you can win. Believe you will survive.
Posted on: Mon, 19 Aug 2013 05:06:28 +0000
Trending Topics
Recently Viewed Topics
© 2015