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"Breast Cancer Journey"


Prologue
The Nightmare Ends

By barbara.wilkey

May 14 2011

Many of my fans have asked how I am doing, so I've decided it's time for a breast cancer update. I'm waiting for an 'all is well' statement from my doctor, but I've not received one. I see my oncologist the end of June and my prayer is for more information.

As many of you know, I finished chemotherapy the end of March. Chemo presented its own set of problems. For me the worst was the fatigue. Second was the nausea, which was controlled thanks to the medicine. There are still certain foods I can't eat. Chemotherapy affects everyone differently.

Two weeks after chemo, I began taking the hormone therapy drug, Tamoxifen. I'll take this drug for five years. It has presented its own problems. About six hours after taking my first pill, I began itching. I took the pill on a Saturday morning. I continued itching through the weekend. I resembled a gorilla with a severe case of fleas. The first thing Monday morning I called my oncologist. He said it much kinder than I'm going to say it, but my interpretation of his words was, "Get over it. It's the only drug that works on your type of cancer." He did suggest a lotion that helped, but hasn't stopped the problem.

I see my family practitioner the first of June to make sure it's the Tamoxifen. Maybe I caught something from my first graders.

In April, I began radiation therapy. The treatments were scheduled Monday through Friday for six weeks. The sixth week is the boost. During this five day treatment, the radiation is concentrated only on the surgeon's incision instead of the entire breast. I have three treatments remaining. Minor fatigue and nausea are present, but for me, the worst side-effect is the pain. Under my right arm the blisters have broken and it hurts. My incision has also blistered. My underarm and down my side resembles a large, raw, bloody steak. Getting radiation on raw skin only makes it more tender and painful. Placing my arm at my side is no longer possible.

I'm treating the area according to my radiologist's orders. I'm using Silvadene cream, a prescription cream, and exposing the area to air as much as possible, but the pain remains. Many of you have offered suggestions before on how to handle different effects of chemo. I'm asking for suggestions to help with this pain.

I look forward to the final treatment and for healing to begin. So far, I've been cut up, injected with poison, and now burnt. I'd prefer to say set on fire, but that's probably just a tad extreme. I'm not sure what else is required to fight this dreadful disease. My first surgery was July 29th, 2010. I've been fighting this battle for ten months and I'm in need of a 'time out' before the next round. I continue to ask for God's healing hand and guidance. I know He walks beside me. I've learned not to pray for patience. The last time I did, I got pregnant with my youngest son. I was 40 when he was delivered. God has a sense of humor.

I would like to thank my FanStory family for the prayers, support, and the love you have shown me. Without you, I doubt I would have faired as well.
God Bless all of you.

Author Notes I am so sorry. I forgot to acknowledge Snowpaw for allowing me to use the beautiful art work, Pink Rose Doubles. I am sorry.
I want to thank all of you again. Truly without your help, this journey would have been more difficult. Thank you.


Chapter 1
My Continuing Fight with Cancer

By barbara.wilkey

December 22, 2010

Many of my fans have asked specific questions about my chemo treatments. I'll try to address those questions. As to the chemo drugs used and how often one receives treatment, it depends on the type of cancer and how your body relates to the treatment. I have survived Phase One; which, in my case was treatment every fourteen days, a total of four.

On chemo day, I enter the treatment center of my hospital. This area is set up into small rooms. I've been lucky enough to get a window each time. I think the nurses realize confining my little old ADD (Attention Deficit Disorder) self to a room for three or four hours without a window would not be to their benefit.

The room has a recliner, for me, and a comfortable chair for my husband. After reviewing my lab work, taking my vitals, and accessing my port they begin pumping a flush and some Decadron, an anti-inflammatory drug and some Aloxi, an anti-nausea drug through my port. After these are completed, then the chemo drugs begin. First, Adriamycin, known by many as the 'Red Devil' because of the side effects, second Cytoxan, and finally, Bevacizumab are pumped through my port one at a time.

There is a TV, but I have yet to watch it. I usually grade papers or edit my next post. My blood pressure is taken often and the nurse reminds me to let her know if I feel any discomfort. I am often asked if I want something to drink or crackers to eat.

These drugs have many side effects. I'm sure your prayers and blessings have helped me withstand many of them. I'll only discuss the ones I had.

1) Baldness (I solved this problem by styling and profiling in hats and scarves.)

2) Extremely dry skin (I am still working with this one. My skin is naturally oily, but I am discovering the benefits of many lotions.)

3) Heat flashes with facial flushing. (I don't have a clue what to do about this one. I can't strip down to nothing during class and stand in front of the air conditioner. Suggestions are welcome.)

4) Fatigue. (Again, I'm failing here. I rest as often as I can, and often come home from work and nap.)

5) Sores in the mouth. (I gargle with salt water. It seems to help.)

6) Nausea. (Ginger ale and ginger snaps are becoming a necessity of life, plus very expensive pills. I have also learned that sucking on ice cubes help.)

7) Poor appetite. (I eat small meals, but try to ensure they include protein.)

8) Darkening fingernails and skin. (I am sure, like my hair, my fingernails and skin will grow back to normal someday.)

10) Low white blood count. (I take a Nuelasta shot on Friday afternoons to help counteract the low white blood count.)

11) Blood pressure rising. (Mine is still low enough they aren't treating it, but I may be soon adding more pills to my already too many daily pills.)

12) Hoarseness. (I drink a lot of water, especially during class.)

13) Bloody nose. (So far this has been minor, but it's being watched.)

14) Soreness on the palm of hands and feet. (The lump on my left hand had the doctors and nurses concerned, but it left after four days without causing any further incident.)

15) Loss of fertility. (I am almost 57 years old, this is a blessing.)

The fatigue, in my opinion, is the worst side effect. I'm used to being busy. Now I am forced to stop and not only rest, but nap, especially the second and third days after a treatment. My balding didn't affect me as much as I thought it would.

I took off Wednesday from work last week because I was so tired. I had hoped resting a day would help. It did not. Friday my body said enough; fatigue and vomiting hit with full force. The effects of chemo get worse with each chemo treatment, they are cumulative. I was told I had a choice to stay in bed or be hospitalized. I chose to remain in bed.

I am taking strong antibiotics, in case there was an infection. Everybody is sure my body was exhausted and words have been mentioned that they hope I learned my lesson about resting. My answer is a wimpy, "yes".

Thursday, December 23, I'm ready to embark on Phase Two, a chemo treatment every week for twelve weeks. The other two drugs stop and a new drug begins, Taxol. Bevacizumab will remain with me. Phase two is supposed to be gentler, because there are only two drugs, but many of the same side effects. One I haven't seen that I could see is pain in the joints and muscles. There will be an increase in blood tests. I am beginning to think this particular hospital supports a colony of vampires.

After Phase Two, I'll give an update on whether I go on to Phase Three of chemo or straight to radiation treatment. The decision hasn't been made yet.

I hope this answers some of your questions and it isn't too technical. I want to give thanks to our awesome Heavenly Father and to all my FS friends. Your support, prayers, and well wishes are amazing. I've learned to draw strength from God and my family and friends. I wish there was some way I could tell you how much each one of you mean to me. Without each and every one of you, I would not be able to do this. I think we all need a group hug.

I've added a free verse poem. Please remember I am not a poet. I write romance novels.

Again, Thank You!!!!!!!!!!


BIG "C"

Cancer has my attention
Life's goals are nonexistent
I can't hide, or even flee
This fight I can not shun
I have no choice, but to win
Five years I'll fight to survive
My goal: To be cancer free
I'll greet that day with open arms
Then, a survivor I'll be
I've been praised for my strength
I'm my son's Guiding Light
Accolades oft repeated
I smile and let them pass
My Faith in God from Day One
Plus, the acts of my supporters
Their prayers and good wishes
Will make my goal obtainable

"Thank you all for your support"

Author Notes Evil Eddie is playing with my bullets. We'll see how it comes out. MERRY CHRISTMAS!!!!!!!!!!!!


Chapter 2
Diagnosis: Breast Cancer

By barbara.wilkey

September 11, 2010

Cancer - "a malignant tumor or growth caused when cells multiply uncontrollably destroying healthy tissue." Webster's College Dictionary, second edition.

The word 'cancer' causes fear to dwell in people's hearts and minds. When the doctor called after my initial biopsy and said I had invasive breast cancer, I thanked her, hung up the phone, and yelled, "SHIT." This may not seem strange, but I do not swear.

Many of my FS friends already know what I'm facing but for the rest of my fans I'll bring you up to date. My first surgery was July 29. They removed the cancerous lump, two centimeters of extra tissue surrounding the lump, and four lymph nodes. I was only facing radiation treatment.

When I returned for my one-week checkup, I learned the follow-up biopsy showed noninvasive cancer in the top and bottom margins of the extra tissue and invasive cancer in one of the extracted lymph nodes. Silently tears rolled down my cheeks. The only thing I was sure of at that point, was I needed to get myself together before I faced Andrew, my twenty-four year old son, who sat in the waiting room.

The following day, I found a quiet place to cry and yell. After my daylong pity party, I realized I had no option but to fight this dreaded disease. I feared I wouldn't find the strength. Through prayers, well wishes, and blessings of my friends and family the strength found me.

Fan Story has blessed me with friends on six continents, Africa, Asia, Australia, Europe, North and South Americas. How could I not find strength with that many friends pulling for me? THANK YOU!!!

My next surgery is September 16. I'll have a segmental mastectomy and an axillary lymph node dissection. Bottom line is I'll lose more breast tissue and all the lymph nodes under my right arm. Chemotherapy, radiation, and hormonal therapy are part of my future. According to my chemo oncologist, some sort of therapy will continue for approximately five years. Who knows when my life will resemble normal again?

God blessed me with four wonderful sons. I've often joked when I make it to Heaven I'm going to ask, "Of all the women on Earth, why was I given boys? I am a girly girl. I love pink, romances, mom movies, am extremely emotional, and enjoy all things feminine." I know God doesn't make mistakes, and He does have a sense of humor, but please? To add to this irony, one thing that sets me apart from all this testosterone is my femininity. My cancer is estrogen-receptor positive - cancer that grows faster in the presence of estrogen. How ironic is that?

I've searched for the positive facts and have discovered a few. I have naturally curly hair. I keep it short because my curls tend do their own thing, no matter what I want them to do. Well, I've heard there's a good chance when my hair grows back, it'll be straight. Another positive fact; I've heard Chemo is a great weight loss program. I wouldn't recommend it for everybody, but it wouldn't hurt if I lost a few pounds.

For all the friendship and love you have shown me, I thank all of you and my prayers are with each of you.

Again, please remember I am not a poet, but this came to mind.

Cancer cannot instill fear.
I believe in myself.

Cancer cannot conquer my body.
I am an instrument of God's Healing.

Cancer cannot invade my soul.
I will fight back.

Cancer cannot cripple my love.
I feel loved more each day.

Cancer cannot steal my body.
My friends offer me strength.

Cancer cannot corrode my faith.
God promises to answer my prayers.

Cancer is a spawn of the Devil.
It cannot survive in God's Light.

Cancer cannot control me.
Jesus is my Lord and Savior.

Author Notes The greatest healing therapy is friendship and love.
Hubert H. Humphrey

I want to apologize to all my Australain friends. I am so sorry I left that goregous country out. It will not happen again. All of you have been very gracious about my mishap.
I agree with Hubert H. Humphrey. I have felt the healing power.


Chapter 3
Cancer update

By barbara.wilkey

June 17, 2012

Many reviewers have asked how I'm doing. It's been a year since I've finished with chemotherapy and radiation treatment. I'm going to attempt to answer the question the best I can. I went to the National Cancer Institute site to see how I'm really doing.
http://www.cancer.gov/cancertopics/coping/life-after-treatment/page4


The following is a quote, then I'll take each symptom and discuss it as it affects me.

"You may find that you are still coping with the effects of treatment on your body. It can take time to get over these effects. You may wonder how your body should feel during this time and what are signs that cancer is coming back. This section describes some of the problems that can occur when treatment is over. Some of the most common problems that people report are:"

Fatigue: I still suffer from the lack of energy, but I have more energy than I did during chemo. During the school year, I couldn't wait for Fridays so I'd have a few days off. By Monday mornings, I was raring to go.

Memory & concentration changes: I laughed at this one because I've always had a poor memory. I do think it's a little worse.

Pain: A few weeks ago, I would have said not a problem, but lately I've had a sharp pain by my right rib cage. I see my radiologist on June 21st. I was told I could have some problems because of radiation therapy.

Nervous system changes (neuropathy): YES!!!! The tips of my fingers and toes are numb and when I'm really tired they tingle. I've been told it's due to nerve damage from chemo and will remain the rest of my life.

Lymphedema or swelling: I lost 16 lymph nodes due to breast cancer. I'll have these problems for the rest of my life. My school district is sending me to a training in Keystone, CO the end of June and first of July. There are certain precautions I need to follow in order to fly. I'll have to wear a compression sleeve and glove on my right arm and hand. Since I live at sea level in TX and Keystone is 9000 feet up in the mountains, I'll struggle with the change in elevation. I'm determined not to have problems and enjoy my trip.

Mouth or teeth problems: Other than a dry mouth at night, no problems. A glass of cold water sets on the table by my bed.

Changes in weight and eating habits: What female wants to discuss weight issues? I'll go straight to eating habits. During chemo, I couldn't eat pizza, spaghetti, plus a few other foods. Well, I still can't eat them or anything with marinara sauce. I can eat fresh tomatoes. Every so often, something I eat the previous week upsets my stomach the followin week. I keep my anti-barf pills with me at all times. When I asked how long this would last, I was told the rest of my life.

Trouble swallowing: I feel left out. So far it's not a problem.

Bladder or bowel control problems: Let's just say I'm on a first name basis with every restroom in any area in which we have traveled.

Menopause symptoms: I could write volumes, but I won't. I have solved the hot flash problem by having my husband install an air conditioner in the bedroom window. We have central air and keep the house around 72 degrees; still not cool enough for me to sleep. My oncologist prescribes some pills to help with this. The side-effect is they may cause suicidal thoughts, but he assures me with my personality he doubts that'll be an issue. I've given my family and close friends the warning if I start acting strange to let me know. LOL

Now for a few personal notes:

1) My husband, Brian, and I spent a few days at Corpus Christi, TX. He thought it would be nice for me to get away and relax. I agreed I could use some time-off. Within minutes after we arrived, I realized Corpus Christi was not the right place for me. I take anywhere from seventeen to eighteen pills a day, depending on the day. Every pill states to stay out of the sun and the heat. My radiologist has told me to keep my right side out of the sun. I spent about twenty minutes at a time wading in the Gulf, then we would do something inside, like a museum. I still enjoyed the gulf, just a little at a time.

2) I'll explain the reason for taking so many pills. Some of them are to help insure the cancer doesn't return. Many others are to help with the side-effects of those pills and to help with the remaining side-effects of chemo. The rest are because chemo caused my allergies to be much worse than they were originally.

3) Many of you already know that chemo causes a person to go bald, which I did. My hair did grow back the same color, but my otherwise wavy hair has become extremely curly. I got my first trim a few weeks ago. I thought my curls would disappear with the trim. NOPE. They're still here. I received a call a few days ago from Shirley Temple. She wanted to know how I got all those curls, just teasing. I often get stopped by strangers asking if the curls are natural.

4) Chemo made my finger and toe nails thick and ugly. My fingernails have finally grown to where they look almost normal. All but one toenail looks fairly normal. I do miss my beautiful long natural fingernails, but I'm headed in that direction again.

5) Itching is another problem. I've seen a dermatologist, who said the itching is due to nerve damage from the chemo. When I get hot, I feel needle pricks over my entire body. I take medication that helps with this, but doesn't solve the problem. After all, I do live in Texas.

6) Research has shown worrying about cancer returning is normal. I don't dwell on it, but when I read about some one's cancer returning, I get depressed for a few days. It's a good thing I have a short attention span and stay busy. Something else soon takes over my thoughts. Our first day in Corpus Christi, I learned about Robin Roberts' new health issue. She had been in remission for five years. I felt pretty down. Later that day, my son sent me the photo of my kittens sleeping in Diva's basket. Those two's antics made me laugh, again. Diva was not laughing.

7) I teach first grade so being flexible is a must. I need to be flexible in everything I do now. I can still do the things I want but sometimes I need to find a different way to do it. For instance the trip to Corpus Christi and getting in the gulf. My family still eats pizza on Friday evenings. I eat something I enjoy so I don't feel left out.

8) All in all, life is very good. I've had to change some eating habits and get more rest. At my age who sunbathes, anyway? My first graders are always busy and keep me on my toes. Usually, when I'm down, one of my boys seems to know it and calls, just to check in. I always can click on FS and what my friends have posted, I laugh, I smile, and sometimes I cry, but I always enjoy reading. It helps me stay focused. Your friendships, well wishes and prayers immensely helped me. I lean on you often. I rely on God to get me through the rough days.

God Bless all of you. You're in my prayers.

Author Notes The artwork is the photo of the kittens in Diva's basket Steven sent me while I was in Corpus Christi. Do you still think they're innocent??
I have written this informally, so it's really not in any official form.


Chapter 4
Chemo - Phase Two

By barbara.wilkey

February 27, 2011

On Thursday, Phase Two of my chemo treatment reached the ten week mark. It's a milestone because I discovered if I'm finished with chemotherapy in two weeks or if I'll continue for an additional thirty weeks. I'll continue with the chemo drug Bevacizumab.

Nothing with me is ever cut and dry. A side-effect of Bevacizumab is it causes sores that won't heal. I have one of those sores on my lower back, right smack dab on my spinal column. This sore is approximately sixteen weeks old and hasn't healed. I've missed two Bevacizumab treatments, but have still received my weekly Taxol treatments.

My chemo oncologist refers to the sore as a sinus. The sinuses I know about are the ones around your nose. I've discovered a sinus can be "a channel for blood; a widen channel containing blood, especially venous blood," or "channel leading from body cavity; an elongated tract leading from a pus-filled region of the body to the exterior or to the cavity of a hollow organ."

My problem is the location, the spinal column. I get, thank Heavens, not often, a wave of pain starting from my lower back traveling up my spinal cord and ending at the base of my skull. It lasts only fifteen to thirty seconds, but it's severe. Other than this occasional pain, I don't feel the sore.

I've an appointment with a general surgeon March 24, and he'll decide if this sore is insignificant. If it is, then I'll continue with Phase Three of chemotherapy. Like I said, nothing with me is ever cut and dry. So I continue my wait.

Whether I continue with the Bevacizumab or not, in seven weeks I'll begin radiation treatment, every day for six weeks. It seems the side-effects are similar but milder than chemotherapy. The difference is my breast will feel like it's severely sunburned and the two treatments together worsen that effect.

When I met with the radiologist, she told me I'm not allowed to nude sunbathe while undergoing radiation treatment.

I laughed.

She stared.

I finally said, "I'm fifty-seven years old and bald. I've had five babies. I'm a grandmother and overweight."

She smiled. "I understand, but as soon as I don't caution somebody that would be the person who does."

Okay, she had me on that one.

As many of you know, I've been fighting fatigue and my red blood count is extremely low, side-effects of Taxol. I'm looking forward to saying good bye to that drug.

The side-effects of chemotherapy are cumulative and each week they become a little worse. On Wednesday, I went to work as normal but within two hours I required a substitute teacher and came home. I slept the rest of the day and through the night. I worked the next two days. My doctor has suggested I take a day off each week for the next two weeks, but I'm too stubborn to admit it's necessary.

I'm grateful for your prayers and well wishes as I fight this battle. I know I'm not alone. I have my family, friends, FanStory friends, and the help of the Lord and Savior who carries me when I'm not strong enough to continue.

God Bless you all.

Author Notes Thank you Sarey Freeman for the lovely artwork, Shasta. I was looking for the breast cancer symbol and found this. It's a beautiful shade of pink, so I chose it.
UPDATE: since June 10, 2010
Ankle surgery, nothing to do with cancer, a torn tendon.
1st breast surgery
2nd breast surgery
Phase One Chemo - 8 weeks
Adriamycin, Cytoxian, & Bevacizumab every other week
Phase Two Chemo - 12 weeks
Taxol every week
Bevacizumab every third week
Phase Three Chemo - 30 weeks & radiation treatment daily for 6 weeks.
Bevacizumab every third week.


Chapter 5
Chemo Therapy

By barbara.wilkey

October 27, 2010

Tears and fears surface
Toxins fill my veins
AC cell killers attack
The good and the bad

Chemo therapy shows no mercy
Affecting hair and nails
Robbing me of dignity
Replacing it with fatigue

With supportive prayers
A few modern drugs
God's promises and inner-strength
I face this long harrowing fight
Tempered by battle
Aided by family
Supported by faith
Encouraged by friends

Gifts from God:
VICTORY

Author Notes Thank you wolf6249107 for the perfect artwork, a wing and a prayer. Please remember I am not a poet, I write romance. This is free verse and the puncuation is minimal.

My chemo begins tomorrow. My chemo oncologist wanted to start it a few weeks ago, but my incission had not healed.
This therapy will kill my white blood cells as well as my malignant cells. An injection the following day called Neulasta, will aid the growth of new white cells. An expensive pill called Neulasta is supposed to help the vomiting and nausea. I have been told I will lose all my hair and my fingernails will become discolored and possibly fall off. Since my immune system will be weakened I am supposed to avoid crowds with colds. I laughed at this one, I teach first grade. I also cannot afford any cuts or bruises.

My chemo dr, calls it AC, the acutal drugs are Adriamycin and Cyton. My treatments will be every other week for 8 weeks, then I switch to every week and a new drug will be added.

Thank you for all your prayers and well wishes. They mean more to me than I can express.


Chapter 6
Cured of Cancer?

By barbara.wilkey

June 26, 2011

Many of you have asked how I'm doing, so I thought it's time to do another cancer update. After the surgeons chopped me up, two breast surgeries, and my oncologist injected me with poison, chemotherapy, for twenty weeks, and finally my radiologist set me on fire, radiation therapy, five days a week for six weeks, I looked forward to hearing the words, "You're cured." After all, I went through this so I'd be cancer free.

On June 17, I went to my radiologist for my one month check-up. She said I was doing very well. The new growth of skin looked good and the burning sensation under my right arm should stop in about a month. I should just keep doing what I'm doing. GREAT!!! I went home and marked my calendar, July 17 no more pain under right arm.

No words indicating I was cured. I decided that may not be her area of expertise. After all, she did set me on fire. I'll wait for my oncologist.

June 23, I met with my oncologist. I bared my breast for him, eager for him to tell me I was cured. He told me I was doing well, but they needed more blood work done, my vitamin D level was a little low. I'm positive this man supports a colony of vampires. I agreed to have more blood drawn.

He also mentioned studies show the reoccurrence of cancer is lower for those who exercised 150 minutes a week. I can handle two and a half hours a week. He hasn't answered my question.

"Am I cured?" I finally blurted out.

His eyes met mine as he said, "I can't answer that question. It doesn't work that way with cancer. If you die at 100 from a heart attack, you were cured of cancer. If you die at 100 from cancer, you were in remission."

Now I know why there's security posted around hospitals. After I considered doing him bodily harm, I decided to get ice cream.

This journey through cancer has not been easy. It seems to be a private journey for each person. My hair is very short, but is growing back. My fingernails are starting to resemble fingernails again. I have mentioned before that for me the fatigue was the hardest part. I'm still working on getting my energy level where it used to be. Radiation therapy was more difficult than for most people. I was told after chemo it would be a breeze. It wasn't because I had a severe reaction to it.

Now I feel cheated because after going through the treatments, I expected to be cured. I guess now I adjust to spending the rest of my life with the fear that someday cancer may rear its ugly head.

I'm positive with God's help I can manage that. During the times I fall short, he will be there to lift me up and wrap his comforting arms around me.

Author Notes Thank you for your concerns and support. I appreciate all of you.
I also don't understand what my oncologist's problem is. 100 years old? I plan on living to 115.


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