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Rachelle
My Lenten Reflection: My Daughter’s
Courageous Travails With Cancer
Rachelle, my 40-year-old daughter is a registered nurse at a hospital in New Jersey. After high school, we sent her to study in America with my cousin Richard and his wife, Mercy, a pediatric nurse, as her guardian. During her practice at the hospital, she met Bob, her Cuban husband, a CPR trainer who now handles a Safety program. They have been happily married with three lovely and talented daughters, Arielle, Gabriel and Janelle.
Last year in early December, she was diagnosed to have a rare kind of breast cancer – 'inflammatory and aggressive'. Inflammatory breast cancer is an uncommon type of breast cancer. This disease occurs when the cancer cells block the lymph vessels in the skin of the breast causing the breast to become red, swollen, and warm. It usually grows rapidly and often spreads to other parts of the body. Treatment usually starts with chemotherapy, generally followed by surgery and/or radiation.
Below are excerpts from Rachelle’s weekly e-mails.
I Want to Be An Active Member
of the Decision-Making Team
Dr. Norman San Agustin, a Cancer Surgeon, promised papa to take care of me. Dr. San Agustin has a busy practice, but in an emergency I do have his personal cell phone number to call.
My oncologist, Dr. Stephen Schreibman is a no-nonsense kind of a doctor. He looks at the whole picture and deals with things step by step, all the while explaining and wanting my input on his decisions. He gets straight to the point and is always there when I have a question or when I am not feeling well. To give you an example, I started with fever one day. I called him and was given antibiotics and instruction to see him the next day for blood work and check up. He is available 24 hours/7 days a week and says that he even carries his beeper to the bathroom with him.
I am looking forward to meeting the other medical professionals that will be handling my cancer treatment. I want to be an active member of the decision-making team when it comes to what will be best for me.
The rest of the medical team includes the cardiologist Dr. David G. Dickinson, the gastroenterologist, the liver specialist, and the pulmonologist. I am going for a second opinion with Dr. Deborah Tepmeyer, who is a leading Oncologist specializing in Inflammatory Breast Cancer. She is the Clinical Specialist at the Cancer Institute of New Jersey located at Robert Wood Johnson Hospital in New Brunswick.
Sharing Her Feelings
Through Her Weekly E-mails
I am getting anxious to go for the surgical removal of this breast mass. It’s getting more and more painful, and it radiates to my axillaries and back area. To help relieve the pain, I use a hot pack made of eucalyptus and lavender leaves – very soothing. But, the emotional pain is harder to soothe.
I want to share my feelings and talk… At this moment I feel so numb! I am so worried about my girls that when I found out I had cancer, the second person I called was the school counselor. The girls went to talk to her at school and their teachers are so kind as to walk them back home everyday to spare me the effort. My girls also met one of the teachers who survived breast cancer. This made it real to them that this cancer can be beaten.
Sometimes, knowing too much about treating symptoms is not to my benefit. But, I have to realize that sometimes just treating symptoms the old fashioned way with chicken soup, hot water bottles, and plenty of rest, is better than taking too much medications. I have to save my liver and kidneys now that I am on chemotherapy since the drugs used can cause liver and bladder toxicity.
Keeping myself on the upbeat mood is what I have opted for on a daily basis, but I do not deny myself my true feelings, which I offer to God and the Holy Spirit to help me turn them into positive motivators for me. This hurdle and test should only make me stronger and make me a better person.
Gathering My Support Systems
At this time, I am gathering my support systems (friends, neighbors, teachers, etc.) and putting them in place to help take care of Robie and the girls at this challenging time in our lives. The couple, who lives in the house next to ours, Jay and Natalie, and their daughter Stephanie, are very helpful and concerned. Natalie’s mother, who was in her ‘80s also had breast cancer. I am drawing from her knowledge and experiences.
One of the side effects of the chemo is dizziness and it is safer for me not to get behind the wheel. On better days, I drive only within one to two mile radius. It helps that Uncle Dick and Tita Mercy live just ten minutes away. They have been very kind and generous with their help. The girls enjoy going over to their house to play with the dogs, not to mention eat the delicious food that Tita Mercy cooks.
Look Good, Feel Good
The American Cancer Society has given my name to a counselor, a researcher, and a breast cancer survivor who will handle my case and give me answers to my questions, as well as support me both emotionally and educationally. I was surprised to learn that they have researchers who have educational materials pertaining to my specific diagnosis, which is Inflammatory Breast Cancer. Since this is the rare form with only one to three percent diagnosed, there is not a lot of information for a lay person to read about.
The American Cancer Society has this program called 'Look Good, Feel Good'. It is offered free of charge to cancer patients. In this two-hour session, representatives from cosmetic companies come and demonstrate how to put on make up. There are massage therapists as well as demonstrations on how to use scarves. Anything to help a cancer patient look or feel better.
I Need Two More Wigs
I met a fellow nurse, Dona-lee, who shares treatment days with me. She came all the way from Montreal, Canada to get treated by Dr. Schreibman. We share tips on how to cope with our illness. She saw me today for the first time without hair. She had a big smile on her face and commented,
'Oh my, you look absolutely fabulous. Not all people look good without any hair!'
That made me feel so good. Hair loss doesn’t bother me at all, it is when the nails start falling off – not because of the cosmetic appearance because you can hide it with gloves – but because of the pain that comes with it.
Sara called because she is going to buy me a wig and she wanted to know what size. That was really thoughtful of her. I was surprised that the package arrived so soon. Thank you for the beautiful scarves. My favorite is the red and black burnt design, very fashion trendy and in time for my Valentine’s Day dinner date with Robie (in our kitchen with the ambiance of candles). The wig fits perfectly. Robie is thrilled to see my head with hair. I wish you could send me two more styles. I’ll send you the pictures of what I want.
Taking a ‘Cocktail’ – A Mixture
of Three Chemotherapeutic Agents
A 'full medical day' means getting blood work, as well as CT Scan of my chest, abdomen, and pelvis at the Breast Center. This is done as a baseline guide and to check for present or future cancer metastasis to other organs. I also picked up from there the reports and films taken of my breast MRI. It looks like this cancer is more extensive than I first thought.
With a sigh of relief, I have started my chemotherapy last December 14 and a second dose on the 16th. I have been given what they call a ‘cocktail’ – a mixture of three chemotherapeutic agents. Then, it was a weekly treatment after that. I wasn’t given a specified length of time, only that I will need A LOT due to the nature of my aggressive cancer. Well, good news at least with the results of the CT Scan. It showed no metastasis to the lungs, liver, spleen, or other organs. Meantime, I have to go for an MRI of the liver and of the brain, the latter because of the daily dizziness I am experiencing.
I am hoping and praying that my liver functions tests would at least be near normal values. The liver is the organ that detoxifies the body of medicines and chemicals. Since chemotherapy is the most toxic of all drugs, my liver should be able to rid my body of the toxins.
I am feeling more and more tired with a lot of bone and joint pain – side effects of the chemo. My oncologist prescribed the use of pain medications every four hours. I have interrupted sleep at night, which leaves me exhausted during the day.
Catching the Girls’ Flu
The first week of January has been a little rough. Arielle and Janelle were sick with fever (103*), sore throat, coughing, etc. - Typical flu like symptoms. I had to nurse them back to health, wake up at 2 a.m. and at 4 a.m. checking their temperatures so I can medicate them. Now, I have the fever, sore throat, earache, and diarrhea. I called Dr. Schreibman just to keep him updated of my condition.
After the first week of March, I had to go for my stress test, echocardiogram and EKG so I can be medically cleared for surgery. Although the good news is that there is nothing wrong with the ventricular function of my heart or the conductivity of its electrical system, the over-all capacity has been compromised by chemotherapy.
Mama, do you recall that I had difficulty breathing. They just found out that I have a blood clot in my lungs. This requires medication that will liquefy the blood clot – a situation that would delay my operation. However, Dr. San Agustin is introducing a surgical technique that would control the body condition so I can go through with my surgery.
(Yesterday at noontime, Max and I received the good news from Rachelle herself that her 8-hour operation went very well. The whole procedure lasted from 1 to 8 in the evening. Bob and the girls waited in the hospital until it was over.)
Worrying About Finances
I was just informed by the Oncologists’ office that there was a balance outstanding for $4,500, which covers treatment during the months of December until February. I have also received in the mail, bills for laboratory work up and diagnostic tests, plus Bills from the radiologists who read the films of the test. I am grateful that Robie’s medical insurance from his job covers 90 percent of all costs. This means we are responsible for only 10 percent.
The medical claims administrator, whom I call when I am given a difficult time by bill collectors or doctor’s offices, is so friendly. I just call her and she straightens everything out for me saying,
'You don’t need this aggravation, just relax and I will take care of this.'
The money you have sent has definitely lifted the burden of anxiety and financial worry with regard to the medical bills and household expenses that used to be covered by my paycheck.
'Be Strong So Mommy Can
Draw From Our Strength'
During the winter season, we expected 15 to 22 inches of snow - A blizzard for the tri-state area. While I was in chemo, Robie took the girls to a park close by where they had fun and excitement sledding and snowboarding. The youngest, Janelle, who has no fear, tried everything, and wiped out three snow boarders. Janelle is such a thrill to watch. She just weaves in and out of all those people. She zooms by and all I hear is, 'Hi, Mommy!' I am confident that she will be okay in whatever she wants to do. I am hoping that next year, she will be voted into the Gifted and Talented program just like Gabie.
Arielle, the eldest, will be starting Middle School next year. Robbie bought her a book about what to expect, prepare for, and challenges, she is to meet. She was truly delighted. She is a very sensitive girl, but she is not really swayed by her friends, and stands up for herself. I just pray that my girls will grow up to be sensible to what is right and wrong. Arielle has been such a rock for her sisters. She reminds them,
'Be strong so Mommy can draw from our strength.'
Gabie, the middle child, has blossomed from the Gifted and Talented program and even made it to the super honor roll this marking period. However, she is the one who has been affected most. She cries herself to sleep every night. Last night, she came to us and said that she feels that it is unfair for me to be sick and to go through so much. THIS IS THE MOMENT WHEN MY SICKNESS FINALLY HIT ME.
I Have Too Much to Live For
I realized that I have to fight this battle more than the 300 percent that I am giving it! I have too much to live for… too much that gives meaning to my life – not wealth of possessions, but wealth of the love of my children, my husband, my parents, my family, and my friends. These are the ones that count the most. Being blessed with these will get me thru… it is more than enough!
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