My story
In 2007, I was a 38-year old young woman who had recently gone back to college to work on my Master’s Degree in Accounting. I had just received a promotion to Sr. Financial Reporting Analyst in July 2007, had passed two sections of the CPA exam, and was preparing to sit for my third exam section on Wednesday, November 21, the day before Thanksgiving. My future looked bright as I was making plans to fast-track into the corporate world, my goal since I had entered it at such a late stage in life.
On November 21, my plans came to a screeching halt as my world was turned upside down with the diagnosis of breast cancer.
On Saturday, November 17, I stepped out of the shower and noticed that the nipple on my left breast appeared to be pulling inward. As I reached down to touch my breast where the inverted nipple was, I placed my fingers on what felt like a golf-ball size lump (my tumor was 3.5cm – the size of a walnut). I panicked and almost passed out. I immediately knew this was not good. I called the hospital and my doctor, and they told me there was really nothing they could do for me on the weekend and that I would have to wait until Monday to be seen. This was the longest weekend of my life.
On Monday, November 19, I saw my GYN, who sent me for an ultrasound on Tuesday. Because of abnormal results on the ultrasound, the doctor wanted to perform and immediate mammogram — my FIRST and LAST mammogram. The mammogram showed a spiculated (irregular borders like tentacles) region in my left breast at approximately 11 o’clock, and the doctor told me I needed a biopsy the next day – the day of my next CPA exam section. I asked her if it was important to have the biopsy done right away and explained to her that I had an exam scheduled for that day. She told me the biopsy must be done right away and that the test could wait. It was then that I knew it was probably going to be bad news.
It was on November 21 that I was diagnosed with breast cancer, and my life as I once knew it, was over. My surgeon explained to me and my family what to expect from this day forward, what decisions would need to be made, and possible tests that would need to be done. She was very caring and compassionate as she carefully explained the details to us and answered initial questions that I had about the cancer and the process. She also told me that she herself had been through breast cancer a year ago, which gave me added confidence and comfort in her guidance and direction through this process.
My entire family – husband, mom, dad, brother, and sister-in-law were there during my biopsy and diagnosis. My initial reaction was one of relief – relief that I actually knew what was going on. I felt that once I had the diagnosis, we could get on with the treatment. Never once did I think I was going to die. Of course, I went through every emotion you could imagine (bitterness, anger, frustration, resentment, sadness, regret, acceptance, anxiety, and depression) as I tried to reconcile what was happening. Yes, there were times I had a pity party, but during the actual treatment period itself, I had a supernatural strength and positive attitude that I attribute to my faith in God and the love and support of many friends and family. My husband had a difficult time dealing with this, and he spent a lot of time in denial. This was additional stress for me, but somehow we got through it. Now he realizes what he did during the process, and we talk about it quite a bit so that if something happens again, he is aware of how to deal with the circumstances.
I almost felt as if God had allowed this to happen to me because He knew I would use this situation to give Him honor and glory and to draw others to Him. I spent many hours journaling on my Caring Bridge website about the work God was doing in my own life and how he was using what many people saw as a negative situation to be an outreach for me to others who were hurting during that same time. The hours I spent writing, praying, and studying my Bible transformed me into a more thoughtful, caring person. This was a painful process for me spiritually also because it was during this time that God revealed many spiritual “cancers” that were present in my life as well. It took getting me still and focused on Him to realize that the wheels had come off the bus of my life and that I needed to pay attention to Him in order to receive true and complete healing.
From 2007 to 2010, my life revolved around doctors. I set up imaginary “finish lines” for the process, only to be disappointed time and time again because things didn’t turn out as planned. So many doctor visits, complications, and detours in the process…it’s so hard to explain without sounding like a medical chart. To put it simply, if it could happen to me, IT DID, a fact that led to depression and loss of self-worth. I had always been a high achiever and to be reduced to a person who couldn’t remember people’s names, events, or facts was quite humbling and devastating to me.
I had received a one-year extension on the parts of the CPA exam I had passed, but that one year passed very quickly, and it was time to start studying again in the fall of 2009. By some miracle, I found the strength, stamina, and memory to study and PASS the last two sections of the CPA exam!!! In fact, it was because of this intense studying that I was able to sharpen my memory and begin to feel more like myself again.
Today, I feel healthy and strong and have a job I love that allows me to travel to lots of interesting places, to meet new people, and to grow and stretch in ways that are exciting and challenging. This has been my best year yet!
Below is an overview of SOME of the details of my diagnosis of invasive ductal adenocarcinoma with lymph node involvement, stage IIB, during 2007-2010:
–Surgeries: (1) Dec. 2007 – bilateral mastectomy with lymph node removal; placement of Power Port for chemo injections; insertion of tissue expanders inserted underneath the chest wall muscle for reconstruction during surgery – recovery time approximately 2 months (2) Dec. 2008 – Implant exchange with tissue expanders. (3) March 2010 – Oophorectomy – removal of ovaries because of increased estrogen production.
–Chemotherapy: 8 cycles of chemotherapy which lasted 5 months (Jan. – June 2008);
–Radiation Therapy: 25 days of radiation therapy – 5 weeks (July/Aug 2008)
–Doctor visits:
-Plastic surgeon: saline injections into the expanders for stretching the muscles and skin (This was the most painful part of the cancer recovery process.)
-Oncologist: blood draws, check-ups, chemo treatments, Neulasta shots (low white blood cell counts), port flush, side effects of chemo (insomnia, fatigue, nausea, vomiting, fever, chemo brain (memory loss), pain, bleeding, peeling feet, headaches, restless leg syndrome, night sweats, peripheral neuropathy in hands and feet, constipation, depression, and hair loss.
-Physical therapy: three different treatment regimens lasting approximately 4-6 weeks each time to restore range of motion in left arm and shoulder after lymph node removal
-Lymphedema specialist: Since having my lymph nodes removed under my left arm, I have a slight case of lymphedema (swelling in my arm) because my lymphatic system does not drain properly. I saw a lymphedema specialist for about a month to receive lymphatic massage and learn how to perform the massage on myself. I also wear a compression sleeve when I fly and when I perform rigorous exercise or activities with my left arm (housecleaning, gardening, etc.) I can only lift 15 lbs. with my left arm now.
-Family doctor: regular visits to update her on my progress and keep her in the loop
-Counselor/psychologist: to talk about emotional, psychosocial issues
I have been cancer-free for four years in December 2011.
My “new normal” and how I’m different today than before my diagnosis:
- I try to prioritize my life differently than before. I know what really matters and spend the time to make my relationships successful.
- I wear my compression sleeve when I fly.
- I listen to my body. It has taken me four years to regain my stamina and energy. After the cancer, my husband worked part-time so that he could do the housework and laundry because I did not have the energy I once had.
- I go to the doctor more than I used to.
- I don’t sweat the small stuff, and most stuff is the small stuff. I used to be pretty uptight about life, but I am much more mellow and flexible than I used to be. Life’s too short to spend it being bent out of shape.
- I cannot get needle sticks or blood pressure taken in my left arm.
- I stretch a lot with my arms and shoulders because they get stiff.
- I cannot carry more than 15 lbs. with my left arm because of my lymphedema. This has been difficult because I travel a lot. I injured my right elbow in 2010, making it very challenging to carry anything since both arms were limited in use.
- I cannot sit in hot tubs because of my lymphedema.
- I have to be careful about eating certain foods like soy because they convert to estrogen in the body.
- My tumor was estrogen/progesterone receptor positive (ER/PR+), which means I can never have any hormone replacement therapy – EVER – even though I have had my ovaries removed! Fun, fun, fun for everyone!
- I take Arimidex every day to prevent the return of cancer. This is a five-year regimen.
My advice to others:
For survivors:
- Use this time to water your spiritual garden.
- Seek counseling if you are having emotional or psychosocial issues. You may need counseling during your treatment and/ or after your treatment, depending on how the illness affects you, what your support system looks like, and what your coping mechanisms are. Do not feel as if this is a weakness. You are going through a battle right now, and you need to be healthy mentally in order to heal physically. A positive attitude is one of your best weapons.
- Prayer works. Use it.
- Try to eat right, exercise, and drink water.
- Chocolate Boost is a very good vitamin supplement drink. You can even freeze it, and it tastes like ice cream! Ensure – yuck! Some foods made me sick, and I didn’t feel like eating much, so I drank quite a few Boost shakes as meal replacements.
- Write down your thoughts.
- Keep your mind sharp by working crossword puzzles, writing, reading, and interacting with people. Work if/when you can.
- Caregivers get tired, stressed and frustrated too. Don’t be too hard on them, even if you do feel terrible.
- Celebrate the good days; push through the hard ones. This too shall pass.
- Ask for help if you need it. This is not the time to be hard-headed or prideful. You need to get well. Let your family and friends pick up some of the slack if needed. Communicate to them what you need; they are not mind-readers.
- Rest. Rest. Rest.
- Don’t beat yourself up if this process does not move as quickly as you expect it to. You will surely get frustrated. It will take time. Expect it. Plan for it. Learn something from it.
- Don’t spend too much time on the internet looking up your diagnosis. It will drive you nuts! Read to educate yourself broadly enough to ask educated questions, but then quit. Your diagnosis will never be exactly the same as someone else’s, so reading the internet will only make you worry.
- Write down your questions before you go to the doctor so that you don’t forget to ask them. If you are having symptoms that are unusual, write those down and tell your doctor also.
- Keep your family doctor in the loop with what is going on.
- Keep a list of your doctors, their addresses, and phone numbers on a spreadsheet. Take this to every doctor’s appointment and let them include it in your file. Each doctor you go to needs to know who your other health care providers are.
- Keep a list of your medications, the dosages, who prescribed them, and what they are for on a spreadsheet. Include any over-the-counter medication on this list. Take this to every doctor’s appointment and let them include it in your file instead of writing it down each time.
- Get a pill box so to keep your pills organized. Set a timer if you need to to help you remember to go to the pill box and take the pills. I know this sounds silly, but when you are taking pain pills or you are experiencing short-term memory loss, this can be very important.
- Be your own advocate with your healthcare. If you are not satisfied with the care you are receiving from your healthcare provider, change to one who is recommended by a friend. Talk to people who have been through what you are going through to see how their healthcare providers treat them and the care they receive. Ask for recommendations on FaceBook. If you don’t feel comfortable using a public forum for the answers, ask the question publicly, and ask people to inbox you with their feedback.
- Ask for copies of your medical records and keep them organized in a binder.
- Take a friend or family member with you to the doctor so that they can hear what he/she says. Being the person who is ill and the one responsible for keeping all of the information straight is not an easy task.
- If you lose your hair, wear a cap at night or your head will get cold.
- If you are going to have a mastectomy, go shopping in advance to buy pajamas and shirts that button up the front. You will not be able to pull tops over your head for a while.
- If you take chemo, don’t wear your favorite body lotion or fragrance. After the illness, our sense of smell tends to bring back very vivid memories, and trust me, you won’t want to remember this every time you wear your favorite fragrance.
- Write thank you notes to pass the time. It will help you feel more grateful and loved and will be a nice gesture at the same time.
- If you are going to experience hair loss, I recommend shaving your head before the loss begins. The sight of the hair loss can be demoralizing, not to mention messy.
- Human hair wigs require drying and styling and are heavier than synthetic hair wigs. Synthetic hair is wash and go! Human hair wigs are also much more expensive than synthetic wigs.
For families:
- This illness will most definitely change your life also. Be sure to take care of yourself too. If you need a break, find someone to take your place as caregiver and give yourself permission to take a break from the responsibility of being the caregiver.
- Be patient with your loved one. They are going through a difficult time and may not know how to express their emotions appropriately.
- Use this time to water your spiritual garden.
- Seek counseling if you are having emotional or psychosocial issues. You may need counseling during your treatment and/ or after your treatment, depending on how the illness affects you, what your support system looks like, and what your coping mechanisms are. Do not feel as if this is a weakness. You are going through a battle right now, and you need to be healthy mentally in order to heal physically. A positive attitude is one of your best weapons.
- Prayer works. Use it.
- Try to eat right, exercise, and drink water.
- Write down your thoughts.
- Ask for help if you need it. This is not the time to be hard-headed or prideful. You need to get well. Let your family and friends pick up some of the slack if needed.
- Help your loved one monitor her physical needs (medication, following doctor’s instructions after surgery, eating properly).
- Treat your loved one with dignity and respect. Don’t treat her like a child. Give her space and recognize her need to be involved in decision-making.
- Husbands, recognize that your wife is experiencing a lot of emotions and physical challenges right now and may not be able be with you sexually for a while. This will not last forever. She needs to feel you hold her and know that you still love her and accept her for the woman that she is regardless of her physical or emotional condition.
- Husbands, you may need to read some literature on how to help your wife through this challenge and how to help yourself through this challenge. You will make it through this stronger than ever if you recognize you have a need as a caregiver – the need to find out how to be there for your wife. Do not try to pull this off on your own – seek guidance from a counselor, a pastor, a website, a pamphlet. There are endless resources to help you.
- Listen to your loved one. You don’t have to provide all the answers or fix things, because you can’t. She needs you to listen and be there for her.
- Try to get her moving. Go for a walk, even if it’s a short one.
- Wet a cold cloth for her and hold her hair back if she is vomiting.
- Keep the bathrooms clean so she is not exposed to harmful bacteria while her immune system is low.
- Try to go to the doctor visits with her and be a second set of ears. Take notes. Ask questions.