Earlier this week I met a new friend, Lisa. She is a volunteer with an amazing organization called Angel Care. The volunteer, non-profit organization is kind of like e-harmony for women who have experienced and are newly experiencing breast cancer. I called and told them my story and I was matched with Lisa, a survivor who will encourage me and share her story with me. We met at Starbucks and it was sort of like a blind date I guess. My mind was racing -- I hope she's nice.. What if she's weird?... Well, it's just coffee.... Do I really need this?.... What if she doesn't like me?... All these questions. Well, Lisa is an amazing strong woman and I feel like I've know her for a long time. There was no weirdness, we hit it off and are going to be friends. She is a good hugger like me! She is there for me and will take me to chemo or go to doctor's appointments if I'd like her to. She gave me a copy of the wonderful Angel Care calendar, which is similar to the calendar produced in the movie "Calendar Girls" -- topless women holding flower pots, buns or cantaloupes in front of their chests. It's very well done and professional, but makes me smile. All of these women are breast cancer survivors like Lisa and me.
[Angel Care is a non-profit 501 (c) (3) organization founded in 1997 by Jan Harris, a breast cancer survivor, to provide caring support to individuals diagnosed with breast cancer. The Angel Care Breast Cancer Foundation is made up of breast cancer survivors who truly understand how it feels to be given this diagnosis. For those afflicted with breast cancer in the greater Puget Sound area, we provide free person-to-person emotional support, important resources to help inform breast cancer patients, networking with others about surgery options, and we help patients recover emotionally during treatments. Angel Care is an approved United Way agency. Angel Care volunteers help with empowerment, knowing which questions to ask the doctor, knowing how to recognize a helpful support group, finding beneficial reading material, networking with others about surgery options , recovering emotionally during treatment, etc. Angel Care exists to fill a need within the greater Puget Sound area, an area with one of the highest breast cancer rates in the nation. Our volunteers, breast cancer survivors themselves, empower the newly diagnosed as they struggle for survival, enhancing their emotional recovery while still going through treatment. We hope to reduce the fear that surrounds breast cancer—to a level where it motivates toward wellness instead of paralyzing with fear. Knowing survivors helps to give a powerful message of hope at this critical time. We are living proof that there is life after breast cancer. Care givers will offer encouragement and hope, helping the newly diagnosed deal with various emotions, offering someone they can turn to for support. The newly diagnosed need a network of survivors to assist them. E-mail: angelcare@angelcarefoundation.org]
Thursday, October 30, 2008
The Best Chemo Yet
Navelbine (I always think it sounds like I should be saying Navy Bean -- must be because fall is soup season) was a breeze today! I was in and out in two hours. The infusion itself took about 20 minutes. Wow! Easy in comparison to the Hell I've been through in the past. I didn't have any reactions and haven't experienced any side effects yet, other than being really tired and somewhat nauseous. I came home, took a percocet and went straight to bed. I was able to rest most of the evening. I started taking Xeloda today, too. So far so good.
Monday, October 27, 2008
Girl Scout BC Awareness Patch
I put together this information to share with Amanda's Girl Scout Troop. They will be earning a Breast Cancer Awareness Patch for the back of their vests. I think it is wonderful that the Girl Scouts organization offers this patch. We'll have a Q&A with the questions I've prepared, then we'll make pillows for the Breast Cancer Resource Center in Tacoma. This is a great group of girls (and moms) and I am happy to be able to do this with them.
What’s with all the PINK?
What’s with all the PINK?
October is BREAST CANCER AWARENESS MONTH. You may have heard about special events, like walks or races, to raise money for breast cancer research. Or maybe you've seen people wear those little pink ribbons on their clothes.
Is there a Breast Cancer Awareness Patch?
Yes, today we will complete the requirements for the patch.
I’m only a young girl, why is this important to me?
Breast cancer is a common cancer among women. It doesn't affect young girls or teens. But girls might want to learn about it because they know someone who has it or because they want to learn how to check for it when they are older.
Does Breast Cancer have a special significance for all Girl Scouts?
Yes, not only because we are female, but also because our founder, Juliette Gordon Low, died from it. Today, modern medical advances make detecting and treating breast cancer a lot easier than it was back in 1927.
Who is at risk for breast cancer?
Who is at risk for breast cancer?
All women are at risk for breast cancer. Many breast cancers may be curable if they are found early. Young girls and teenagers can’t get breast cancer. It’s always okay to ask your mom or doctor questions about your body as you change and grow.
Do you know anyone with breast cancer?
Amanda’s mom has breast cancer. She gets special medicine called chemotherapy and had surgery to make the cancer go away. Many of us may know aunts, grandmas or our mom’s friends who have had breast cancer.
Why should Girl Scout troops learn about breast cancer?
Since we don’t know what causes breast cancer or how to prevent it, the best protection is to detect it as early as possible. Girl Scouts can help remind their mom and other women they love about the importance of yearly mammograms and monthly self examinations. (A mammogram is very similar to an x-ray of the breast. Women should get their first mammogram by the age of 40. A self examination is a way to check for changes in breast tissue).
Is family history important?
Is family history important?
Family history is very important. Each girl will receive a form “Family Medical History”, to write down their significant health risks, such as heart disease, diabetes, strokes, cancer and other important health factors. This is for the girls’ information only and does not need to be shared with the group. It can be completed at home.
Can we do a service project?
Can we do a service project?
Today we will make pillows for the Breast Cancer Resource Center in Tacoma. The pillows will be given to women who are going through breast cancer treatment or who have recently had surgery. The pillows will help make wearing a seat belt or resting more comfortable.
What are some other things we can do to help out?
What are some other things we can do to help out?
You might consider sharing your knowledge with your mom, older sisters, aunts, grandmothers or neighbors and friends. Materials can be obtained from the American Cancer Society. You could help out with the American Cancer Society’s “Relay For Life” or Breast Cancer Awareness Run/Walk in your community or area. Girls can help with mailings, serve refreshments to participants, help with set up or clean up, distribute brochures and flyers, make signs or banners and much more. Contact the Seattle American Cancer Society office (http://www.cancer.org/ or 206-283-1152) for the dates and locations of events near you.
Thursday, October 23, 2008
Test Results & Chemo Round 3
I saw my oncologist today. The circulating tumor cell test was NEGATIVE! This is excellent news!! I've been waiting three weeks to hear the results of this test. A positive result would have indicated that there was in fact active cancer somewhere in my body, and my prognosis would have been poor. Even though the test was negative, there is a 25% chance that there are cancer cells floating around out there (it's such an inexact science). This is based on the size of active cancer left after the first two rounds of chemo. Today the oncologist put my survival rate at 75%. That is pretty good! There is basically a 1 in 4 chance that I could have a recurrence. I am facing more chemo and I'm ready to get going so I can get it over with. I had my port put back in yesterday. It was a day surgery and only took about an hour, no big deal. I'm a little sore today, but not too bad. The bone scan looked good. I have a PET scan scheduled for early next week. The PET is a complete body scan that should detect any "hot spots" (cancer). My third round of chemo begins next Thursday at St. Joe's in Tacoma. I will be getting two chemo drugs that I haven't had before: a weekly infusion of Navelbine and daily oral Xeloda. This will be a three month chemo cycle. My oncologist will continue to follow me closely and will order regular blood tests called CA 15-3 (a marker test), which he says isn't always accurate. I don't feel like I'm out of the woods, but feel like I'm on my way. Please continue to keep me and my family in your thoughts and prayers.
[What is a PET scan? A positron emission tomography (PET) scan is a special kind of imaging test which allows doctors to see how certain tissues and organs within the body are functioning. The most significant difference between a PET scan and other imaging tests such as MRI or CT scan is the ability to detect changes in the body at the cellular level rather than after a disease has progressed enough to actually effect the surrounding tissue or organs. A PET scan may be useful for helping to detect certain types of cancer, brain disorders, heart problems, and other conditions of the central nervous system. A PET scan is performed by injecting a small amount of radioactive chemical into a vein. As the chemical travels through the body, it is absorbed by the organs and tissues. During the test, a scanner records the energy produced by the cells. A computer converts the recording into three-dimensional pictures of an area of the body and any cells that are changing show up at a brighter contrast to any surrounding, normal cells. There is very little preparation involved prior to a PET scan and they are most often done on an outpatient basis. In general, most patients are simply given restrictions on food or drink for 6 to 12 hours prior to the test. The test takes approximately 2 hours to complete. PET scan technology is widely used in oncology as it helps to stage and detect certain types of cancer including breast cancer, lymphoma, and certain types of lung cancer. PET scan technology is also widely used in medical research.]
[Navelbine: Navelbine is an anti-cancer ("cytotoxic") chemotherapy drug. Navelbine is given through a vein by intravenous infusion (IV). There is no pill form. Navelbine is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. Navelbine Side Effects include: Low blood counts, increased risk for infection or anemia, nausea, vomiting, muscle weakness, pain along the site where Navelbine was given, peripheral neuropathy (numbness in your fingers and toes), hair loss and low platelet (these help to clot the blood) counts.]
[Xeloda: Generic Name: Capecitabine Xeloda is an anti-cancer ("cytotoxic") chemotherapy drug. Xeloda is taken as a pill by mouth. The following Xeloda side effects are common: low red blood cell count (anemia), fatigue, GI distress, hand-foot syndrome, skin rash, swelling, redness, pain and/or peeling of the skin on palms of hands and soles of feet, nausea, vomiting, mouth sores, numbness or tingling of hands or feet, swelling of ankles or feet, shortness of breath, back, muscle, bone or joint pain, dizziness, insomnia, cough, blood clots, excessive sleepiness, confusion, very rare seizures.]
[What is the cancer antigen 15-3 (CA 15-3) blood test for breast cancer? Cancer Antigen 15-3 (CA 15-3) is a blood test that is given during or after treatment for breast cancer. It is most useful in monitoring advanced breast cancer and the patients response to treatment. CA 15-3 is not a blood test that screens for breast cancer. It is a tumor marker test that is helpful in tracking cancers that overproduce CA 15-3. CA 15-3 is a protein that is a normal product of breast tissue, and it does not cause breast cancer. If a cancerous tumor (cells growing out of control) is present in the breast, though, levels of CA 15-3 may increase as the number of cancer cells increase. Not every breast tumor causes a rise in CA 15-3, so for patients with tumors that do not produce CA 15-3 or with early-stage breast cancer, this test is not useful. Only about 30% of patients with localized breast cancer (cancer limited to the breast) will have increased levels of CA 15-3. In patients with metastatic breast cancer, CA 15-3 can be found in 50 to 90% of all cases. If the patient has completed treatment for breast cancer, the doctor may test your blood for CA 15-3 on a regular schedule to see if levels of this antigen are rising or remaining steady. Rising levels of CA 15-3 may indicate a recurrence of breast cancer, but since other conditions can cause higher levels of this antigen, the test results must be taken in to consideration with the results of imaging studies. Levels of CA 15-3 will help the doctor determine if: treatment is working or needs adjustment, cancer has made an early recurrence without noticeable symptoms or cancer has progressed.]
[What is a PET scan? A positron emission tomography (PET) scan is a special kind of imaging test which allows doctors to see how certain tissues and organs within the body are functioning. The most significant difference between a PET scan and other imaging tests such as MRI or CT scan is the ability to detect changes in the body at the cellular level rather than after a disease has progressed enough to actually effect the surrounding tissue or organs. A PET scan may be useful for helping to detect certain types of cancer, brain disorders, heart problems, and other conditions of the central nervous system. A PET scan is performed by injecting a small amount of radioactive chemical into a vein. As the chemical travels through the body, it is absorbed by the organs and tissues. During the test, a scanner records the energy produced by the cells. A computer converts the recording into three-dimensional pictures of an area of the body and any cells that are changing show up at a brighter contrast to any surrounding, normal cells. There is very little preparation involved prior to a PET scan and they are most often done on an outpatient basis. In general, most patients are simply given restrictions on food or drink for 6 to 12 hours prior to the test. The test takes approximately 2 hours to complete. PET scan technology is widely used in oncology as it helps to stage and detect certain types of cancer including breast cancer, lymphoma, and certain types of lung cancer. PET scan technology is also widely used in medical research.]
[Navelbine: Navelbine is an anti-cancer ("cytotoxic") chemotherapy drug. Navelbine is given through a vein by intravenous infusion (IV). There is no pill form. Navelbine is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. Navelbine Side Effects include: Low blood counts, increased risk for infection or anemia, nausea, vomiting, muscle weakness, pain along the site where Navelbine was given, peripheral neuropathy (numbness in your fingers and toes), hair loss and low platelet (these help to clot the blood) counts.]
[Xeloda: Generic Name: Capecitabine Xeloda is an anti-cancer ("cytotoxic") chemotherapy drug. Xeloda is taken as a pill by mouth. The following Xeloda side effects are common: low red blood cell count (anemia), fatigue, GI distress, hand-foot syndrome, skin rash, swelling, redness, pain and/or peeling of the skin on palms of hands and soles of feet, nausea, vomiting, mouth sores, numbness or tingling of hands or feet, swelling of ankles or feet, shortness of breath, back, muscle, bone or joint pain, dizziness, insomnia, cough, blood clots, excessive sleepiness, confusion, very rare seizures.]
[What is the cancer antigen 15-3 (CA 15-3) blood test for breast cancer? Cancer Antigen 15-3 (CA 15-3) is a blood test that is given during or after treatment for breast cancer. It is most useful in monitoring advanced breast cancer and the patients response to treatment. CA 15-3 is not a blood test that screens for breast cancer. It is a tumor marker test that is helpful in tracking cancers that overproduce CA 15-3. CA 15-3 is a protein that is a normal product of breast tissue, and it does not cause breast cancer. If a cancerous tumor (cells growing out of control) is present in the breast, though, levels of CA 15-3 may increase as the number of cancer cells increase. Not every breast tumor causes a rise in CA 15-3, so for patients with tumors that do not produce CA 15-3 or with early-stage breast cancer, this test is not useful. Only about 30% of patients with localized breast cancer (cancer limited to the breast) will have increased levels of CA 15-3. In patients with metastatic breast cancer, CA 15-3 can be found in 50 to 90% of all cases. If the patient has completed treatment for breast cancer, the doctor may test your blood for CA 15-3 on a regular schedule to see if levels of this antigen are rising or remaining steady. Rising levels of CA 15-3 may indicate a recurrence of breast cancer, but since other conditions can cause higher levels of this antigen, the test results must be taken in to consideration with the results of imaging studies. Levels of CA 15-3 will help the doctor determine if: treatment is working or needs adjustment, cancer has made an early recurrence without noticeable symptoms or cancer has progressed.]
Monday, October 13, 2008
Encouraging Article
Triple Negative Breast Cancer: Making Sense of Estrogen, Progesterone and Her2 Receptor Status
by Kevin Knopf, MD
Most oncologists now are thinking of breast cancer as at least four diseases based on endocrine features - luminal A, luminal B, Her2 positive and the so called "triple negative" - breast cancers that express neither estrogen receptors, progesterone receptors nor Her2 receptors. These latter breast cancers, or "triple negative" breast cancers have a reputation (deservedly so) for being difficult to treat.
Yet many oncologists, like myself, have dozens of patients with "triple negative" breast cancer who are cured. And many who are not. What is the difference?
Well the therapeutic armamentarium is not as great with a triple negative breast cancer. Hormonal therapy (tamoxifen, aromatase inhibitors) does not work. The benefit we see with Herceptin (and a newer agent Tykerb) in combination with chemotherapy, is not available in either the curative (newly diagnosed) or metastatic setting.
And yet many women are cured. There was a recent article in one of our oncology journals that I read; it was the fifth out of five articles that issue and not a high profile article, but it reinforced thinking about triple negative breast cancer.
This was a study of many patients treated at MD Anderson Cancer Center in Houston with triple negative breast cancer. At this cancer center many women receive chemotherapy before surgery, or neoadjuvant chemotherapy, and thus the tumor can be examined to see what sort of response the cancer had to chemotherapy.
The results? Those women whose cancers shrank from chemotherapy had a higher chance of cure than those women who didn't. Another finding which was probably confirmed, rather than new, was that those women who developed metastatic disease with triple negative breast cancer were more likely to develop metastases to internal organs (like the liver and lung) rather than the bone. And a third finding was that many women whose cancer did recur had a recurrence within the first three years after diagnosis.
What is the take home message for our readers? I think the main message should be to keep fighting and to never lose hope - even though triple negative breast cancer is a tougher cancer to treat, if it responds nicely to chemotherapy then a survival advantage - and a good cure rate - will be seen.
We don't have a way of "looking" for that response in the traditional adjuvant setting - chemotherapy given after surgery - so maybe it's best to assume that we are curing each patient with triple negative breast cancer for starters. And we continue to look for better chemotherapy agents and better ways of determining which agents are right, so that we can cure even more patients with triple negative breast cancer.
by Kevin Knopf, MD
Most oncologists now are thinking of breast cancer as at least four diseases based on endocrine features - luminal A, luminal B, Her2 positive and the so called "triple negative" - breast cancers that express neither estrogen receptors, progesterone receptors nor Her2 receptors. These latter breast cancers, or "triple negative" breast cancers have a reputation (deservedly so) for being difficult to treat.
Yet many oncologists, like myself, have dozens of patients with "triple negative" breast cancer who are cured. And many who are not. What is the difference?
Well the therapeutic armamentarium is not as great with a triple negative breast cancer. Hormonal therapy (tamoxifen, aromatase inhibitors) does not work. The benefit we see with Herceptin (and a newer agent Tykerb) in combination with chemotherapy, is not available in either the curative (newly diagnosed) or metastatic setting.
And yet many women are cured. There was a recent article in one of our oncology journals that I read; it was the fifth out of five articles that issue and not a high profile article, but it reinforced thinking about triple negative breast cancer.
This was a study of many patients treated at MD Anderson Cancer Center in Houston with triple negative breast cancer. At this cancer center many women receive chemotherapy before surgery, or neoadjuvant chemotherapy, and thus the tumor can be examined to see what sort of response the cancer had to chemotherapy.
The results? Those women whose cancers shrank from chemotherapy had a higher chance of cure than those women who didn't. Another finding which was probably confirmed, rather than new, was that those women who developed metastatic disease with triple negative breast cancer were more likely to develop metastases to internal organs (like the liver and lung) rather than the bone. And a third finding was that many women whose cancer did recur had a recurrence within the first three years after diagnosis.
What is the take home message for our readers? I think the main message should be to keep fighting and to never lose hope - even though triple negative breast cancer is a tougher cancer to treat, if it responds nicely to chemotherapy then a survival advantage - and a good cure rate - will be seen.
We don't have a way of "looking" for that response in the traditional adjuvant setting - chemotherapy given after surgery - so maybe it's best to assume that we are curing each patient with triple negative breast cancer for starters. And we continue to look for better chemotherapy agents and better ways of determining which agents are right, so that we can cure even more patients with triple negative breast cancer.
Thursday, October 9, 2008
Me & My Bald Friends
Part of me didn't want to post these pictures. I don't think I look like myself and don't feel pretty. But, it's reality. I did think it was fun to take pictures with bald people I know (or met in an airport bar). So, why do most men look so handsome and distinguished with no hair? I got very puffy from all of the steroids. I was so puffy, in fact, that a nurse recently asked me if I was Korean or Japanese. She argued with me, insisting that I was Asian. She said she could tell by my eyes. Really. I was confused, recovering from surgery and wondered if I was imagining it. But, I wasn't. Why would someone do that? I think Asian people have the most beautiful facial features, but I'm not Asian. I am as caucasian as they come, with a huge dose of Scandinavian to boot. I am including a picture of me with my brother Danny, even though he's not bald... because lots and lots of people told me I looked like Danny when he shaved his head in high school. I wish I had a picture of him from back then. I am bummed that I didn't get a picture with Brad.
Wednesday, October 8, 2008
Feeling Deflated
I was talking to my friend Julie tonight. She asked me how I was feeling and I said, "honestly, I am feeling a little deflated". We both just started laughing. Ya, I'm deflated, that's for sure. Physically, it looks like somebody let the air out of my chest. Emotionally, I feel like I went from a complete high last Wednesday with the good news to a complete low on Friday with the bad news. It is good that my sense of humor is in tact!
Being as the reconstruction is on hold I decided to go get fitted for my prosthesis. The lady who helped me at Nordstrom was very nice. I'm all set. They are like explants instead of implants. Even though the reconstruction is purely cosmetic, I'm a bit disappointed that I have to wait. My reconstructive surgeon has an open house where women come and show off his work. They talk about all the different types of reconstruction and share their experiences. I am sure I would find this to be very educational. In time, everything in time.
[deflate, -flated, -flating: 1. to release the air or gas from something inflated, (as a balloon) 2. to reduce (currency, prices, etc.) from an inflated condition 3. to depress or reduce (a person or a person's ego, hopes, spirits, etc.) 4. to become deflated]
Being as the reconstruction is on hold I decided to go get fitted for my prosthesis. The lady who helped me at Nordstrom was very nice. I'm all set. They are like explants instead of implants. Even though the reconstruction is purely cosmetic, I'm a bit disappointed that I have to wait. My reconstructive surgeon has an open house where women come and show off his work. They talk about all the different types of reconstruction and share their experiences. I am sure I would find this to be very educational. In time, everything in time.
[deflate, -flated, -flating: 1. to release the air or gas from something inflated, (as a balloon) 2. to reduce (currency, prices, etc.) from an inflated condition 3. to depress or reduce (a person or a person's ego, hopes, spirits, etc.) 4. to become deflated]
Spa Day #3
Before I can plan spa day or weekend #4, I have to write about spa day #3. Austin gave me a spa package for my birthday. Hey, guys... this is a wonderful gift idea! The weekend before my double mastectomy surgery, Caryn and I spent the day at Gene Juarez in Bellevue. It was fabulous! Massage, facial, pedicure, manicure, wow -- it was so nice and just what I needed to feel pretty before going in for surgery. We had lunch at PF Changs and did a little retail therapy, too. I have known Caryn since 7th grade and we went to summer camp (at Lutherland) together for years.
Tuesday, October 7, 2008
Things People Say to Cancer Patients
Get ready... I hope you find this as funny as I did, I found it on the internet.... Relax. I'm including it to lighten things up, not because somebody said something to offend me. That is nearly impossible.
"It might turn out to be a blessing in disguise"
Really? It's a freaking BRILLIANT disguise then. Because right now this blessing looks a lot like the second leading cause of death in the world today.
"We could all get killed crossing the street tomorrow -- you never know"
I agree that we have no idea how long we've got. But I'm pretty sure that cancer is a little more life threatening than crossing the street. Which would you rather face when you wake up tomorrow? Cancer or crossing the street ten times? I thought so.
"Breast cancer? It's a good one to get I've heard -one of the better ones"
This is like telling you that it's good that it was your youngest son who got permanently disfigured because you liked him the least! Yes there are worse cancers. But there are no good cancers.
More…
· "You could step off the curb tomorrow and get hit by a bus" (not a good analogy, its like I already got hit by the bus and now its backing up over me)
· "You gotta think positively" (ok, I'm positive I had cancer, and I'm positive it wasn't fun)
· "You'll be fine"
· "So, your fine now right?"
· "My grandma died of that"
· "Can I see what is going on under that hat?"
· "If anyone can beat it it's you"
· "It's a good thing you have a pretty face"
· "If it's not your time, it's not your time" (then why bother with the surgery and treatment?)
· "Life is not fair" (thanks for the heads up)
· "Every cloud has a silver lining" (huh?)
· "Its just a bump in the road" (living with a cancer diagnosis, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
· "Don't worry"
· "You're lucky you didn't lose weight on chemo"
· 'Remember Lance"
· "You gotta be like Lance"
· "Lance beat cancer"
· "Just look at Lance"
· "Just think, you're done" (done? I'm done?...I guess I'm done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
· "You look good bald"
· "So, was the cancer bad?" (no, I had the good kind remember?)
· "This is a treatable disease" (Have they found a treatment for your insensitivity yet?)
· "How do you know if it's working?" (I die, if it didn't work)
· "You know you can eat more curry, its supposed to kill cancer cells" (great tip, thanks)
· "You'll be fine, you have a great attitude" (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. What does that mean?)
"It might turn out to be a blessing in disguise"
Really? It's a freaking BRILLIANT disguise then. Because right now this blessing looks a lot like the second leading cause of death in the world today.
"We could all get killed crossing the street tomorrow -- you never know"
I agree that we have no idea how long we've got. But I'm pretty sure that cancer is a little more life threatening than crossing the street. Which would you rather face when you wake up tomorrow? Cancer or crossing the street ten times? I thought so.
"Breast cancer? It's a good one to get I've heard -one of the better ones"
This is like telling you that it's good that it was your youngest son who got permanently disfigured because you liked him the least! Yes there are worse cancers. But there are no good cancers.
More…
· "You could step off the curb tomorrow and get hit by a bus" (not a good analogy, its like I already got hit by the bus and now its backing up over me)
· "You gotta think positively" (ok, I'm positive I had cancer, and I'm positive it wasn't fun)
· "You'll be fine"
· "So, your fine now right?"
· "My grandma died of that"
· "Can I see what is going on under that hat?"
· "If anyone can beat it it's you"
· "It's a good thing you have a pretty face"
· "If it's not your time, it's not your time" (then why bother with the surgery and treatment?)
· "Life is not fair" (thanks for the heads up)
· "Every cloud has a silver lining" (huh?)
· "Its just a bump in the road" (living with a cancer diagnosis, losing your hair, getting chemo, radiation, gaining weight, having hot flashes, being depressed and anxious is not a bump in the road its a major mountain.)
· "Don't worry"
· "You're lucky you didn't lose weight on chemo"
· 'Remember Lance"
· "You gotta be like Lance"
· "Lance beat cancer"
· "Just look at Lance"
· "Just think, you're done" (done? I'm done?...I guess I'm done with cancer everyone. Nothing left to do. How about hormonal therapy, all the side effects, more boob surgery and worrying for the rest of my life about recurrence)
· "You look good bald"
· "So, was the cancer bad?" (no, I had the good kind remember?)
· "This is a treatable disease" (Have they found a treatment for your insensitivity yet?)
· "How do you know if it's working?" (I die, if it didn't work)
· "You know you can eat more curry, its supposed to kill cancer cells" (great tip, thanks)
· "You'll be fine, you have a great attitude" (If attitude really matters then why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. What does that mean?)
Triple Negative
Understanding Triple Negative Breast Cancer
It is now commonly understood that breast cancer is not one form of cancer, but many different "subtypes" of cancer.
These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors. Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.
From Lifeline the quarterly publication of Breast Cancer Network of Strength (formerly Y-Me)
Developing New Treatment Approaches in Triple-Negative Breast Cancer
Unfortunately, with current treatment options, women with triple-negative breast cancer (or estrogen receptor (ER)- negative, progresterone receptor (PR)- negative and human epidermal growth factor receptor 2 (HER2)- negative breast cancer) have fewer choices and lower survival rates than women who have ER-positive, PR-positive, or either HER2-positive or HER2-negative breast cancer. Other characteristics attributed to triple-negative breast cancer are:
- rapid rise in cancer occurance following diagnosis
- peak risk of recurrence at 1 to 3 years
- increased risk of cancer spreading to the brain
- rapid growth and progression of cancer
- no validated targets for therapy (as opposed t HER2-positive breast cancers and therapies, for example, such as Herceptin and Tykerb to treat HER2-positive disease by targeting the HER2 pathway)
In an effort to increase treatment options and positive outcomes, triple-negative disease remains an area of continuous study. Right now, clinicians are considering different aspects of triple-negative breast cancer to determine the best course of action. When clinicians tried to understand why some women with triple-negative breast cancer respond to treatment and others do not, they looked at women with all types of breast cancer and saw that those who achieved a pathological complete response after treatment did well and those without a pathological complete resonse did not do as well. Women with triple-negative breast cancer who did not have a pathological complete response did especially poorly.
It is now commonly understood that breast cancer is not one form of cancer, but many different "subtypes" of cancer.
These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors. Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.
From Lifeline the quarterly publication of Breast Cancer Network of Strength (formerly Y-Me)
Developing New Treatment Approaches in Triple-Negative Breast Cancer
Unfortunately, with current treatment options, women with triple-negative breast cancer (or estrogen receptor (ER)- negative, progresterone receptor (PR)- negative and human epidermal growth factor receptor 2 (HER2)- negative breast cancer) have fewer choices and lower survival rates than women who have ER-positive, PR-positive, or either HER2-positive or HER2-negative breast cancer. Other characteristics attributed to triple-negative breast cancer are:
- rapid rise in cancer occurance following diagnosis
- peak risk of recurrence at 1 to 3 years
- increased risk of cancer spreading to the brain
- rapid growth and progression of cancer
- no validated targets for therapy (as opposed t HER2-positive breast cancers and therapies, for example, such as Herceptin and Tykerb to treat HER2-positive disease by targeting the HER2 pathway)
In an effort to increase treatment options and positive outcomes, triple-negative disease remains an area of continuous study. Right now, clinicians are considering different aspects of triple-negative breast cancer to determine the best course of action. When clinicians tried to understand why some women with triple-negative breast cancer respond to treatment and others do not, they looked at women with all types of breast cancer and saw that those who achieved a pathological complete response after treatment did well and those without a pathological complete resonse did not do as well. Women with triple-negative breast cancer who did not have a pathological complete response did especially poorly.
What? More Chemo??
October 3, 2008 - I saw the oncologist today. I went in prepared today to talk to him about my follow up: how much vitamin D should I be taking, what's the plan for blood tests, how long should I wait before starting reconstruction, etc.
This hit me like a ton of bricks. The six months of chemo worked well. It reduced the tumor from 4 cm down to 1.2 cm. The problem is that I didn't have a "complete response". In other words, the cancer that was left was still active. It could have spread through the blood supply and "set up house" in other organs (most likely are liver, lungs, brain, bone). It's likely that it didn't spread through the lymph system because the lymph nodes were negative, but it could have. All it takes is one cell getting "loose" and making it's way to another spot.
Here's the deal. The kind of breast cancer I have is THE most aggressive kind there is. It is known as triple negative. Reconstruction is on hold. The oncologist is ordering a bone scan and a special blood test. I need to heal from the surgery and then we will make a plan. He did say it was very likely that I will need another 3 months of chemo. I see the oncologist again on October 23rd to review test results and we'll go from there. Please continue to keep me and my family in your thoughts and prayers.
This hit me like a ton of bricks. The six months of chemo worked well. It reduced the tumor from 4 cm down to 1.2 cm. The problem is that I didn't have a "complete response". In other words, the cancer that was left was still active. It could have spread through the blood supply and "set up house" in other organs (most likely are liver, lungs, brain, bone). It's likely that it didn't spread through the lymph system because the lymph nodes were negative, but it could have. All it takes is one cell getting "loose" and making it's way to another spot.
Here's the deal. The kind of breast cancer I have is THE most aggressive kind there is. It is known as triple negative. Reconstruction is on hold. The oncologist is ordering a bone scan and a special blood test. I need to heal from the surgery and then we will make a plan. He did say it was very likely that I will need another 3 months of chemo. I see the oncologist again on October 23rd to review test results and we'll go from there. Please continue to keep me and my family in your thoughts and prayers.
Excellent News!
September 24, 2008 - I've been waiting all day to hear from the surgeon. He said he'd call today. 5:15 p.m. he calls. He went over the pathology report. The margins are CLEAR! Woo Hoo!! That is the best news ever. That means they got it all. He did say that the tumor was still active and measured out at 1.2 cm. I didn't think that mattered at all. Who cares if it's still alive and kicking, it's out of my body!
October 1, 2008 - Sue has been here since Sunday. She's been driving the kids around, running my household and taking me to appointments. She is wonderful. Today I had a follow up apointment with the surgeon. Everything looks good. They took the drains out. Yeah! I was happy to see the drains go. I couldn't get comfortable to sleep at night and plus, they were just gross. We went over the pathology report again. He said that everything looks good and the margins are clear. He said from his perspective I probably wouldn't need more chemo. I was ecstatic. I felt like my life had been saved. We started spreading the good news. It was fun to get the word out fast and let everyone know I was good to go!
October 1, 2008 - Sue has been here since Sunday. She's been driving the kids around, running my household and taking me to appointments. She is wonderful. Today I had a follow up apointment with the surgeon. Everything looks good. They took the drains out. Yeah! I was happy to see the drains go. I couldn't get comfortable to sleep at night and plus, they were just gross. We went over the pathology report again. He said that everything looks good and the margins are clear. He said from his perspective I probably wouldn't need more chemo. I was ecstatic. I felt like my life had been saved. We started spreading the good news. It was fun to get the word out fast and let everyone know I was good to go!
Surgery
September 19, 2008 - 9:45 a.m. check in for surgery (double mastectomy) at Overlake Medical Center in Bellevue. I am not anxious about losing my breasts. I am not that attached to them. They served their purpose when I nursed my kids. Right now all I can think about is getting the cancer out. After I'm healed I'll have reconstruction which means new and improved, bigger and better. (.)(.) Why not? Austin went with me to the hospital. Mom stayed with the kids. I am very confident in my surgeon. He is supposed to be the best. I hope they get it all. Just like that, 5:30 p.m. I'm out of recovery and in my room. I feel better than I expected. Very out of it, on lots of pain meds, sleepy, but doing well. The surgeon came to see me. He said he was pleased, there wasn't a lot of bleeding or bruising, things "looked good". So, that's encouraging. Very encouraging. Austin stayed for quite a while. Mary & Brad and Caryn came to visit me. Mom came to visit later in the evening. I'm 42 and still want my mom when I don't feel good. I think about that and get sad about the idea of not being there for my own kids. I can't imagine. I can't think about it or I just cry. All of the nurses that saw me commented on how nice the incisions looked and what a good job the surgeon did. Very good. Now, we're waiting for the pathology report.
My First Haircut
September 10, 2008 - I saw Lorna today for my first haircut & color. My hair grew in really gray and fine. It was so soft, like baby hair. I haven't been without a hat yet. The color turned out dark brown. It's pretty dark for me, but there's not enough to foil yet. When it gets a little longer we'll put some blonde pieces back into it. The cut is really, really short (well, my hair is about an inch long all over, really short in back). It's spiked up a little bit in the back and combed over to one side in the front. I will need to find a product that works well to keep it spiked up. I picked up the kids at school. Erin was the first person who saw it. She said she really liked it. I think she was being nice. :) I do think it's fun, but it also looks very butchy (no offense to my gay friends). Oh well, it's hair. So, I've been going without a hat. I wonder when I'll have my first bad hair day.
Done with Chemo, Going Camping!
August 12, 2008 - My last day of chemo! Yahoo!!! Debbie and Sid brought balloons and flowers to the hospital for me. I can't believe I'm done. Wonderful! The next big thing is the surgery (double mastectomy). I have to wait 3 - 4 weeks for my body to cleanse itself of the chemo before going in for surgery. Chemo was hard on me. I feel really wiped out.
August 16, 2008 - We had tickets to see Tom Petty at the Gorge with John & Kelly. There was no way I could go. I just finished chemo and I still feel like crap. Austin went for the day and had fun for me. Nathan went to Nana's house for the weekend and Liz had Amanda for a sleepover. I had the house to myself (a rare occurence) and just hung out, read my book, watched movies, drank cocoa and slept.
August 28, 2008 - We had four camping reservations this summer, three of which we had to cancel because I wasn't feeling well. I was determined to get one camping trip in this summer. It was part of my "do normal things, try to feel normal and you'll feel better" philosophy. Plus, we needed a family trip together. Austin and Nathan packed the car, we headed out and were on the road to Anacortes to catch a ferry for Orcas Island to camp at Moran State Park. We love camping at Moran. We love Orcas Island in general. Most of you know we were married there and it is a special place for us. We got there, set up camp and roasted hot dogs for dinner. We sat around the fire, made s'mores and really enjoyed ourselves. We were camping, a normal thing we do! The next day it started to sprinkle, then it rained, then it poured. So, we packed up and came home. I can camp in the rain, but if the inside of the tent gets wet then I draw the line. We tried. It was still a fun road trip.
August 16, 2008 - We had tickets to see Tom Petty at the Gorge with John & Kelly. There was no way I could go. I just finished chemo and I still feel like crap. Austin went for the day and had fun for me. Nathan went to Nana's house for the weekend and Liz had Amanda for a sleepover. I had the house to myself (a rare occurence) and just hung out, read my book, watched movies, drank cocoa and slept.
August 28, 2008 - We had four camping reservations this summer, three of which we had to cancel because I wasn't feeling well. I was determined to get one camping trip in this summer. It was part of my "do normal things, try to feel normal and you'll feel better" philosophy. Plus, we needed a family trip together. Austin and Nathan packed the car, we headed out and were on the road to Anacortes to catch a ferry for Orcas Island to camp at Moran State Park. We love camping at Moran. We love Orcas Island in general. Most of you know we were married there and it is a special place for us. We got there, set up camp and roasted hot dogs for dinner. We sat around the fire, made s'mores and really enjoyed ourselves. We were camping, a normal thing we do! The next day it started to sprinkle, then it rained, then it poured. So, we packed up and came home. I can camp in the rain, but if the inside of the tent gets wet then I draw the line. We tried. It was still a fun road trip.
Talking to the Kids
January 2008 - Kids are very intuitive. They would figure out before long that something was up. I was crying a lot. Austin was hugging me more than usual. Meals, cards and flowers started showing up. I knew we had to tell them the news and we did back in January. Amanda understands that mommy is sick and that's about the extent of it. She was afraid of me for a while when I first lost my hair. I don't think she recognized me. We got some children's books that helped. "Our Mom has Cancer" was a good one. We borrowed some from Nathan's school counselor, Bonnie. She was great! Nathan took the news pretty hard. He was embarrassed about the idea of me being bald. He point blank asked "are you going to die?". He wanted to know my survival rates and a percentage (he's a bright kid). I told him my survival rate was 99.9%, which is a stretch. It is acutally 80 - 85%, based on tumor size, type and lymph node involvement. After the second round of chemo I leveled with him. He deserved to know the truth. He wanted to know if I was cured and explained that the doctor would follow me closely for five years and then we would talk about being cured. It's easy to say please don't worry, but we all do. I want Nathan to focus on being a kid and not to stress about the cancer. We've tried to keep our routine as normal as possible. He still has soccer, guitar lessons, Sunday school, homework and friends over. Every night when Nathan said his prayers he would ask God to help me be strong and healthy. I love my kids so much. I cannot even imagine not being here for them. I have a lot of living left to do and I pray for full healing.
Communicating with Children: How to Tell Them What You Need During Your Breast Cancer Journey
The entire family is likely to feel anxious when a loved one is diagnosed with breast cancer, and communication plays a key role in coping. However, children have unique fears and concerns when illness comes between them and a parent they depend upon for love, direction and security, making the dual roles of parent and patient a difficult road to navigate. “It’s natural for parents to feel the need to protect a child from the fear and uncertainty that go along with breast cancer or any other serious illness by withholding information,” says Christine McGinnis, Psy.D., a family therapist in Roswell, Ga. “This is the wrong thing to do, because children then fill in the blanks with what they don’t know. By explaining your illness to your children, you can help them manage their fears and guide them toward accurate and hopeful interpretations of events during your journey toward recovery.” Although families may make every attempt to maintain regular routines, it is important to acknowledge that certain changes may be required due to medical and emotional needs. Children should be informed that these needs may make you less available at times, and be reassured that they will have access to you again in the near future. “Young children need to hear from you that Mommy isn’t feeling well, and that’s why she has to go to the doctor a lot and take medicine that makes her sick,” says Dr. McGinnis. “A teenager can handle a more detailed conversation in terms of the actual illness and what the treatment period is going to be like. But children of all ages need to hear that it’s okay to give you space during the times when you are feeling sick or just need a good cry by yourself.”By setting expectations for your children, you send a reassuring message that you are still in charge and that they will not be left on their own. But with energy divided between your normal responsibilities and the demands of treatment, you still may have to rely on the assistance of family members and friends to complete certain tasks. Asking children to help is a logical way to ease your burden, and pitching in can contribute to children’s sense of purpose within the family. However, it is important to be sensitive to how much your children want to be involved and to gauge their adjustment to additional expectations. “You have to remember that children are self-centered, and that this is what they need developmentally,” Dr. McGinnis cautions. “If you take away too much of that, they miss a part of parenting. And too much responsibility creates a danger that children might take on an adult role, which is not good for them.” When you do ask for help, try to give children tasks they can safely and easily perform. Keep in mind that age matters not just in terms of what a child can accomplish, but in how they may prefer to contribute. Younger children may feel good about bringing you a glass of water or helping to take care of the family pet. Teens may be more open to tasks that recognize their growing maturity and independence, such as driving younger siblings to school or picking up a prescription. Regardless of how large or small the contribution, children should receive recognition for their efforts. They need to hear that they have made a difference. They also need understanding when they resist giving the time that you ask for, even when the request seems small. “Children aren’t capable of comprehending your needs at an adult level,” Dr. McGinnis says. “They are struggling with knowing that their mother is sick, yet at the same time they really want Mom to make their breakfast and attend school activities. And it’s natural for them to want those things, even when they realize you’re not up to it.”
The entire family is likely to feel anxious when a loved one is diagnosed with breast cancer, and communication plays a key role in coping. However, children have unique fears and concerns when illness comes between them and a parent they depend upon for love, direction and security, making the dual roles of parent and patient a difficult road to navigate. “It’s natural for parents to feel the need to protect a child from the fear and uncertainty that go along with breast cancer or any other serious illness by withholding information,” says Christine McGinnis, Psy.D., a family therapist in Roswell, Ga. “This is the wrong thing to do, because children then fill in the blanks with what they don’t know. By explaining your illness to your children, you can help them manage their fears and guide them toward accurate and hopeful interpretations of events during your journey toward recovery.” Although families may make every attempt to maintain regular routines, it is important to acknowledge that certain changes may be required due to medical and emotional needs. Children should be informed that these needs may make you less available at times, and be reassured that they will have access to you again in the near future. “Young children need to hear from you that Mommy isn’t feeling well, and that’s why she has to go to the doctor a lot and take medicine that makes her sick,” says Dr. McGinnis. “A teenager can handle a more detailed conversation in terms of the actual illness and what the treatment period is going to be like. But children of all ages need to hear that it’s okay to give you space during the times when you are feeling sick or just need a good cry by yourself.”By setting expectations for your children, you send a reassuring message that you are still in charge and that they will not be left on their own. But with energy divided between your normal responsibilities and the demands of treatment, you still may have to rely on the assistance of family members and friends to complete certain tasks. Asking children to help is a logical way to ease your burden, and pitching in can contribute to children’s sense of purpose within the family. However, it is important to be sensitive to how much your children want to be involved and to gauge their adjustment to additional expectations. “You have to remember that children are self-centered, and that this is what they need developmentally,” Dr. McGinnis cautions. “If you take away too much of that, they miss a part of parenting. And too much responsibility creates a danger that children might take on an adult role, which is not good for them.” When you do ask for help, try to give children tasks they can safely and easily perform. Keep in mind that age matters not just in terms of what a child can accomplish, but in how they may prefer to contribute. Younger children may feel good about bringing you a glass of water or helping to take care of the family pet. Teens may be more open to tasks that recognize their growing maturity and independence, such as driving younger siblings to school or picking up a prescription. Regardless of how large or small the contribution, children should receive recognition for their efforts. They need to hear that they have made a difference. They also need understanding when they resist giving the time that you ask for, even when the request seems small. “Children aren’t capable of comprehending your needs at an adult level,” Dr. McGinnis says. “They are struggling with knowing that their mother is sick, yet at the same time they really want Mom to make their breakfast and attend school activities. And it’s natural for them to want those things, even when they realize you’re not up to it.”
Spa Weekend #2
July 26, 2008 - Dacca, Katey and I went to The Willows spa in Woodinville for the day. It was wonderful! I felt like buttah after a massage and body wrap. We sat outside in a cabana and had pedicures while drinking a glass of wine. Fabulous! We spent the night at a hotel in Kirkland and had a nice dinner outside at a restaurant on Lake Washington. It is nice to get away, just relax and focus on me. I just finished week #9 of the second round of chemo. I have three weeks to go. Dacca is also a survivor. She was diagnosed four months before me and has been my guide through this process. She can tell me what's coming and what she's been through. It's very helpful to have her so close by and always there to talk.
The Triathletes
Summer 2008 - My cousin Keri completed the Danskin Triathlon this summer. She is a wonder woman and just had a baby a few months ago! On the back of her shirt she wore a sign that said "I Tri for Dena". That is so awesome!! Mary and Andrea both completed the Lymphoma Luekemia Society Triathalon, in honor of people they know who have battled or are currently fighting cancer. I am one of those people. I am honored that they would do this in my name! Here's what they had to say about their experiences.
Mary: I did it! On Saturday, July 26th I completed my triathlon at the Federal Escape Triathlon in 1 hour 40 minutes. The Sprint distance triathlon involved a 1/4-mile swim, 12-mile bike, and a 3-mile run. Although I did not set any Olympic records, I did raise money for The Leukemia & Lymphoma Society to help with cancer research. Thank you for your generosity and support. I must admit, the race was tough. I have a shoulder injury and was unable to swim freestyle; therefore I swam the distance on my side. But once I made it to the first buoy in the middle of the lake, I new I could do it. Sink or swim as they say. Out of the water, soaking wet, I throw on my shoes & helmet and off I go. I loved the bike ride ... my strong sport ... probably because you can rest going down hill. I did drop my water bottle (same spot as 3 others), but continued on. Unfortunately, when it was time to dismount my bike, I forgot to take my feet out of the straps. Crash!! What a concerned crowd! (My husband, kids and family). Good thing the adrenalin was pumping. I laughed at myself, brushed myself off, racked my bike and off I ran. Not too much blood, the band-aid can wait. It’s really odd to run when your bottom and legs are numb, but I knew that it will get better after the first mile. There’s the finish line... I made it, my body was a bit dehydrated (hence the dropped water bottle) but I was smiling. Yeah!! What an experience. Despite the minor hurdles, I did enjoy this accomplishment. I finished 8th / 15 for my age group. I wasn’t last!
I know that my story was nowhere near as tough as the years of doctor visits and the months of chemotherapy that cancer patients endure. To the cancer patients, every day is a test of endurance that I cannot imagine. Please continue your prayers for all cancer patients and my loved ones:
Dena (Best Friend)
Jeannie (Sister)
Brad (father-in-law)
Christy (Brad’s Aunt)
Andrea: What an amazing accomplishment. I have finished my first "Team In Training" Triathlon in Maui, Hawaii on June 8th in about 4 hours & 54 minute, .9 mile swim, 25 mile bike, & 6 mile run, and we have one more this weekend in Bellingham, WA, Lake Padden, June 28th. My family is coming to cheer me on, and I am so excited to share this with them. The "Team In Training" teams for Maui where able to raise over 1.2 million dollars for "The Leukemia & Lymphoma Society" It really is a great feeling to be apart of raising this much for such a great cause. Read on to hear of my journey. A huge, huge thank-you to all who have supported me and this cause. Now for the highlights of my Maui race: We flew out friday and for me sitting on a plane for over 5 hours was tough in itself, but made it to Maui and immediately had to head to bike pick-up, which was about 4 miles away. Of course, we had to ride our bikes back to our hotel. Brief relaxation, then dinner then off to bed. Yikes, Saturday 6 am morning wake up to have a pre-race day practice, which meant getting up early to mimick our race for the next day. Back on the bike to ride another 4 miles to our swim location (where our swim will be taking place the next day), swim about a half mile, then back onto the bike for a 12 mile loop of the race course, up death hill, plus many more hills. Not done with biking yet, we still have to pick up our race packets, eat breakfast & lunch and then back on the bike to ride another 4+ miles back to our hotel. Tired, need a nap, no time, small break, but need to go shop for trinkets for the family. Got some! Now we must rush off to our Pasta dinner for carb. loading for race day. Very heart warming to see over 250 other "Team In Training" participants from all over the country. Many participants with Cancer diseases. This is why we are doing it! We are helping them, and they too are racing for the cause. My heart goes out to them and all that face this disease. Awesome dinner, ate way to much. Is it bed time yet???? Way tired, am I really in Maui, or is it just a dream, I think a dream, since time is going by way to quick. Have to pack for race day, get all my numbers on, swim gear, bike gear, run/walk gear, check to all. Bed time finally!!! Race Day!!!! 4am comes way to quick, I think I slept maybe two hours. Tired but excited to have it be race day. Big smile. Months of training has paid off. I am ready, Wait, we must ride to our race location, back on the bikefor a 4+ mile ride. Oh my we have not even started our race, and I have to get on my bike again. Tired before race, hungry, maybe, but definetly tired! Food? Don't I need to eat something? Yikes, too excited, nervous, whatever to eat, but I force a fig newton bar down, and I think a banana, and a "heed" race drink. OK, I am set, need to get all marked up with a sharpie with my race numbers. #380. Organize bike and gear in a smal spot. The ladies on either side of my gear think they are camping out, as both of them take up a very large space, what do they think this is. Space hogs! Oh well, I am relaxing, meditating, taking it all in, as I know I fly home tomorrow, and want to remember this moment of calm pre-raceness. I AM READY! Picture time with team mates, we are all in our black tri shorts, TNT jerseys or black swim tops, swim cap & goggles in hand. Ready! Hawaiian Blessing. Just beautiful, blowing of the shell, hawaiian women priest gives us a tear jerking prayer and then it is time for the swim. I am in the last heap #6, Have to wait and watch most of my team mates head out for the swim. My turn, I am off, I loved the swim. Though most of my team mates felt like they where in a washing machine ( guess it was pretty rough). It did not bother me at all. Love it, meditated through it. I have a mantra all the way through the swim. I am doing this for Makahala (my daughter-she loves the water), Kurt Gegner my dad who passed away from Leukemia, & Bridgette DeBacker who has Leukemia, & Dena Pinard who has Breast Cancer. This is why I am doing this, so my chant through the swim was these people. Finishedthe swim, onto to bike. My next chant was dedicating my bike ride to: my son Kurt, who loves to ride his bike, My dad, Kurt, Bridgette & Dena. Tough, tough, tough ride, we have to ride the course twice, which means death hill twice. Of course that is not the only hill on the course, oh no, probably about 80% of the course is hills, I mean up hills of some type. But back to death hill. Yikes, made it up with a smile, I am thinking round two, I will need to walk it, but by the time I come around or round two, I have a bit of shot blocks, heed drink & water in me, just maybe I can make it up, Oh, thank goodness for awesome team mates!!! Thank-you Teri!!! I pass Teri, and she gives me a big "Go Team, go Andrea" And that gives me that extra boost to make it up that &%*^%* hill. I hollar...waaaaaaahooooooo, I feel like I am done with the bike, and it is all done hill from here. NOOOOO, really I need to ride at least another 8 miles, OK I can do this. Bike done!!! Last transition, onto my most difficult event the run, or in my case the walk. OK, we are in about 100 degrees plus, it is hot. I really do love myWashington weather. Back to my chant dedicating the run to my dear husband, Jeff, who has always supported me 200%, my dad Kurt, Bridgette & Dena. This keeps me focused! I can do this, it is a mind game for me to try to run and not pass out, so I of course do the whole two loops walking with every once in awhile a run in there. Thank goodness for the cold water, ice sponges and seeing lots of team mates, our coach Lance, mentors, & ANN (our coordinator). Seeing everyone on the course really helps the mind stay focused. I also had a disposable camera in my back pocket, and decided to take some pictures, I felt like a tourist. Silly me, but I have some pictures to prove that I made it through that aweful run/walk. Finally an end in sight. The finish line!!! Oh my goodness, I did it, my team mates where there and i have a great picture of me finishing, wow, what an amazing journey. Message time to get my body a little R& R. Rest....................not yet, may have to wait till I get home tomorrow. Do I finally take a nap or onto to the victory dinner. First, must quickly pack up the bike for its journey back to Washington, then must clean up and prepare for the Victory Dinner. Ahhhhh, we can all relax and try to dance and eat and maybe go for a midnight swim......ha, ha, ha. Love that water. Will miss Maui and its water, wish I could have stayed and absorbed the beautiful Hawaiian islands, but back to reality and onto my next triathlon trianing with the better half of the team. The "Lake Padden" Diehards- You all rock and we will all have a new venture to write about after this weekend. I AM A TRIATHLETE! and I accomplished it while helping a great cause "The Leukemia & Lymphoma Society". Thank-you to all for your support, and all of my awesome teammates who helped me accomplish this! See some of you in Bellingham for round two of the Triathlon world.
Mary: I did it! On Saturday, July 26th I completed my triathlon at the Federal Escape Triathlon in 1 hour 40 minutes. The Sprint distance triathlon involved a 1/4-mile swim, 12-mile bike, and a 3-mile run. Although I did not set any Olympic records, I did raise money for The Leukemia & Lymphoma Society to help with cancer research. Thank you for your generosity and support. I must admit, the race was tough. I have a shoulder injury and was unable to swim freestyle; therefore I swam the distance on my side. But once I made it to the first buoy in the middle of the lake, I new I could do it. Sink or swim as they say. Out of the water, soaking wet, I throw on my shoes & helmet and off I go. I loved the bike ride ... my strong sport ... probably because you can rest going down hill. I did drop my water bottle (same spot as 3 others), but continued on. Unfortunately, when it was time to dismount my bike, I forgot to take my feet out of the straps. Crash!! What a concerned crowd! (My husband, kids and family). Good thing the adrenalin was pumping. I laughed at myself, brushed myself off, racked my bike and off I ran. Not too much blood, the band-aid can wait. It’s really odd to run when your bottom and legs are numb, but I knew that it will get better after the first mile. There’s the finish line... I made it, my body was a bit dehydrated (hence the dropped water bottle) but I was smiling. Yeah!! What an experience. Despite the minor hurdles, I did enjoy this accomplishment. I finished 8th / 15 for my age group. I wasn’t last!
I know that my story was nowhere near as tough as the years of doctor visits and the months of chemotherapy that cancer patients endure. To the cancer patients, every day is a test of endurance that I cannot imagine. Please continue your prayers for all cancer patients and my loved ones:
Dena (Best Friend)
Jeannie (Sister)
Brad (father-in-law)
Christy (Brad’s Aunt)
Andrea: What an amazing accomplishment. I have finished my first "Team In Training" Triathlon in Maui, Hawaii on June 8th in about 4 hours & 54 minute, .9 mile swim, 25 mile bike, & 6 mile run, and we have one more this weekend in Bellingham, WA, Lake Padden, June 28th. My family is coming to cheer me on, and I am so excited to share this with them. The "Team In Training" teams for Maui where able to raise over 1.2 million dollars for "The Leukemia & Lymphoma Society" It really is a great feeling to be apart of raising this much for such a great cause. Read on to hear of my journey. A huge, huge thank-you to all who have supported me and this cause. Now for the highlights of my Maui race: We flew out friday and for me sitting on a plane for over 5 hours was tough in itself, but made it to Maui and immediately had to head to bike pick-up, which was about 4 miles away. Of course, we had to ride our bikes back to our hotel. Brief relaxation, then dinner then off to bed. Yikes, Saturday 6 am morning wake up to have a pre-race day practice, which meant getting up early to mimick our race for the next day. Back on the bike to ride another 4 miles to our swim location (where our swim will be taking place the next day), swim about a half mile, then back onto the bike for a 12 mile loop of the race course, up death hill, plus many more hills. Not done with biking yet, we still have to pick up our race packets, eat breakfast & lunch and then back on the bike to ride another 4+ miles back to our hotel. Tired, need a nap, no time, small break, but need to go shop for trinkets for the family. Got some! Now we must rush off to our Pasta dinner for carb. loading for race day. Very heart warming to see over 250 other "Team In Training" participants from all over the country. Many participants with Cancer diseases. This is why we are doing it! We are helping them, and they too are racing for the cause. My heart goes out to them and all that face this disease. Awesome dinner, ate way to much. Is it bed time yet???? Way tired, am I really in Maui, or is it just a dream, I think a dream, since time is going by way to quick. Have to pack for race day, get all my numbers on, swim gear, bike gear, run/walk gear, check to all. Bed time finally!!! Race Day!!!! 4am comes way to quick, I think I slept maybe two hours. Tired but excited to have it be race day. Big smile. Months of training has paid off. I am ready, Wait, we must ride to our race location, back on the bikefor a 4+ mile ride. Oh my we have not even started our race, and I have to get on my bike again. Tired before race, hungry, maybe, but definetly tired! Food? Don't I need to eat something? Yikes, too excited, nervous, whatever to eat, but I force a fig newton bar down, and I think a banana, and a "heed" race drink. OK, I am set, need to get all marked up with a sharpie with my race numbers. #380. Organize bike and gear in a smal spot. The ladies on either side of my gear think they are camping out, as both of them take up a very large space, what do they think this is. Space hogs! Oh well, I am relaxing, meditating, taking it all in, as I know I fly home tomorrow, and want to remember this moment of calm pre-raceness. I AM READY! Picture time with team mates, we are all in our black tri shorts, TNT jerseys or black swim tops, swim cap & goggles in hand. Ready! Hawaiian Blessing. Just beautiful, blowing of the shell, hawaiian women priest gives us a tear jerking prayer and then it is time for the swim. I am in the last heap #6, Have to wait and watch most of my team mates head out for the swim. My turn, I am off, I loved the swim. Though most of my team mates felt like they where in a washing machine ( guess it was pretty rough). It did not bother me at all. Love it, meditated through it. I have a mantra all the way through the swim. I am doing this for Makahala (my daughter-she loves the water), Kurt Gegner my dad who passed away from Leukemia, & Bridgette DeBacker who has Leukemia, & Dena Pinard who has Breast Cancer. This is why I am doing this, so my chant through the swim was these people. Finishedthe swim, onto to bike. My next chant was dedicating my bike ride to: my son Kurt, who loves to ride his bike, My dad, Kurt, Bridgette & Dena. Tough, tough, tough ride, we have to ride the course twice, which means death hill twice. Of course that is not the only hill on the course, oh no, probably about 80% of the course is hills, I mean up hills of some type. But back to death hill. Yikes, made it up with a smile, I am thinking round two, I will need to walk it, but by the time I come around or round two, I have a bit of shot blocks, heed drink & water in me, just maybe I can make it up, Oh, thank goodness for awesome team mates!!! Thank-you Teri!!! I pass Teri, and she gives me a big "Go Team, go Andrea" And that gives me that extra boost to make it up that &%*^%* hill. I hollar...waaaaaaahooooooo, I feel like I am done with the bike, and it is all done hill from here. NOOOOO, really I need to ride at least another 8 miles, OK I can do this. Bike done!!! Last transition, onto my most difficult event the run, or in my case the walk. OK, we are in about 100 degrees plus, it is hot. I really do love myWashington weather. Back to my chant dedicating the run to my dear husband, Jeff, who has always supported me 200%, my dad Kurt, Bridgette & Dena. This keeps me focused! I can do this, it is a mind game for me to try to run and not pass out, so I of course do the whole two loops walking with every once in awhile a run in there. Thank goodness for the cold water, ice sponges and seeing lots of team mates, our coach Lance, mentors, & ANN (our coordinator). Seeing everyone on the course really helps the mind stay focused. I also had a disposable camera in my back pocket, and decided to take some pictures, I felt like a tourist. Silly me, but I have some pictures to prove that I made it through that aweful run/walk. Finally an end in sight. The finish line!!! Oh my goodness, I did it, my team mates where there and i have a great picture of me finishing, wow, what an amazing journey. Message time to get my body a little R& R. Rest....................not yet, may have to wait till I get home tomorrow. Do I finally take a nap or onto to the victory dinner. First, must quickly pack up the bike for its journey back to Washington, then must clean up and prepare for the Victory Dinner. Ahhhhh, we can all relax and try to dance and eat and maybe go for a midnight swim......ha, ha, ha. Love that water. Will miss Maui and its water, wish I could have stayed and absorbed the beautiful Hawaiian islands, but back to reality and onto my next triathlon trianing with the better half of the team. The "Lake Padden" Diehards- You all rock and we will all have a new venture to write about after this weekend. I AM A TRIATHLETE! and I accomplished it while helping a great cause "The Leukemia & Lymphoma Society". Thank-you to all for your support, and all of my awesome teammates who helped me accomplish this! See some of you in Bellingham for round two of the Triathlon world.
Monday, October 6, 2008
Admitted for Chemo
June 26, 2008 - I am still having allergic reactions to Abraxane. They want to slow it way down, combine it with a saline drip and give me the infusion over a 24 hour period. So, I'm being admitted to St. Joe's in Tacoma to receive my chemo. They call this desensitization. The idea is that over time they can speed up the infusion once my body has desensitized to it. Whatever. Just "Git R Done"!! This is week five. I have seven more weeks to go. I have my hospital bag all ready to go: PJ's, toothbrush, lip gloss, my ipod, gum, book, knitting, ice breaker candy to suck on while they access my port, and a picture of my kids. Mary, Debbie and Dacca visited me a lot at St. Joe's over the next seven weeks.
July 3, 2008 - Kristen brought Nathan to see me at the hospital. She also brought some really fun games that would become part of my hospital bag. Have you heard of Farkle? It is a great game and I highly recommend it. It's a dice rolling game, kind of like Yahtzee only better. She also brought Pass the Pigs - pig rolling, fun and funny! We also played a lot of Uno. I was in the hospital for 24 hours or more at a time and there was lots of time to pass beween naps. The thing is, there's only so much I could do drugged up the way I was. The Benadryl and anti-nausea meds made me really loopy and sleepy.
July 3, 2008 - Kristen brought Nathan to see me at the hospital. She also brought some really fun games that would become part of my hospital bag. Have you heard of Farkle? It is a great game and I highly recommend it. It's a dice rolling game, kind of like Yahtzee only better. She also brought Pass the Pigs - pig rolling, fun and funny! We also played a lot of Uno. I was in the hospital for 24 hours or more at a time and there was lots of time to pass beween naps. The thing is, there's only so much I could do drugged up the way I was. The Benadryl and anti-nausea meds made me really loopy and sleepy.
Now I'm Diabetic!?
June 23, 2008 - The massive amounts of steroids I have been on in order to tolerate the Abraxane have wreaked havoc on my blood sugar levels. In essence, I have steroid induced diabetes. I have seen an endocrynologist and he started me on insulin shots. I have to test my blood sugar five times a day. This is crazy. One more thing. I can't wait for this to be over! I am thankful that it is temporary. Again, I will do what I have to do. Good news, alcohol doesn't raise blood sugar, so I can have a drink!! The only thing is that my mouth tastes like metal, so I haven't even enjoyed a glass of wine since I've been diagnosed. Maybe I will try a margarita. Icy, cold things (like smoothies) taste really good to me. Hey wait a minute, didn't I have a margarita on that spa weekend? :)
Spa Weekend #1
June 20, 2008 - I really needed a break. Treatment is wearing on me. Debbie and I got a last minute deal and went to a resort in Tuscon for the weekend. It was HOT and so relaxing! It felt good to bake in the sun as much as I could. I have to be careful because the chemo makes me burn easily. Still, I lathered on the sunscreen and went in the pool. Loved it! Check out the huge cactus.
Second Half of Chemo Begins
June 3, 2008 - I had my first Abraxane infusion today. It's a "taxane", related to Taxol, but is easier to tolerate. I had a reaction (puffy eyes, red face, tightness in the chest), but was able to tolerate it with massive amounts of steroids. I didn't have an anaphylactic response, Thank God! The reactions worry me and I wonder how effective this drug will be if I'm allergic to it. I want the cancer out and gone. The steroids concern me, too.
[Abraxane is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Abraxane is classified as an "plant alkaloid," a "taxane" and an "antimicrotubule agent."Abraxane Side Effects: Abraxane: low blood counts, hair loss, nausea, abnormal ECG, peripheral neuropathy (numbness of hands and feet), pain in joints and muscles, weakness and fatigue.]
[Abraxane is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug. Abraxane is classified as an "plant alkaloid," a "taxane" and an "antimicrotubule agent."Abraxane Side Effects: Abraxane: low blood counts, hair loss, nausea, abnormal ECG, peripheral neuropathy (numbness of hands and feet), pain in joints and muscles, weakness and fatigue.]
Anaphylactic Reaction to Taxol
May 13, 2008 - My first day of the new drug, Taxol. It didn't go well. I had an anaphylactic reaction. I felt a whoosh of heat rush to my head. It felt like my head was going to explode. I turned red instantly, even the whites of my eyes were red. My heart raced. I thought I was going to have a heart attack, stroke or die. I couldn't breathe, my airway was closing. It felt like someone was sitting on my chest. My face, eyes, lips and tongue were swelling. Scary!! My chemo nurses, Alicia and Angie were on it, as was my friend Julie who remained incredibly calm the whole time. I received oxygen, mega amounts of steroids and Benadryl, then went to Auburn hospital where I was admitted for the night. I received more steroids, IV fluids and Benadryl. Mom and Paul came to see me. I had a rash all over my body, even on my hands and feet. I was still incredibly swollen. Have you ever seen a bald woman with a head to toe rash? It was literally on my head. Not pretty. I am really sick of having cancer and all of the crap that goes with it.
Okay, this is hilarious: While at Auburn Hospital a doctor came in to see me. He said, "okay, I see here in your chart that you have breast cancer... uh huh... and I see you've already had your mastectomy." (Come on, I'm nearly a B, was wearing a sports bra and sweat shirt, but really...) I said, "well, actually, no I haven't had the surgery yet". He turned beet red and hustled out of the room. I never saw him again. It really cracked me up. I bet he tells that story to this day. I also bet he never makes that assumption again.
[Anaphylaxis is a serious, potentially life-threatening allergic response that is marked by swelling, hives, lowered blood pressure and dilated blood vessels. In severe cases, a person will go into shock. If anaphylactic shock isn't treated immediately, it can be fatal. Anaphylaxis may begin with severe itching of the eyes or face and, within minutes, progress to more serious symptoms. The condition can quickly result in an increased heart rate, sudden weakness, a drop in blood pressure, shock and ultimately unconsciousness and death.]
Okay, this is hilarious: While at Auburn Hospital a doctor came in to see me. He said, "okay, I see here in your chart that you have breast cancer... uh huh... and I see you've already had your mastectomy." (Come on, I'm nearly a B, was wearing a sports bra and sweat shirt, but really...) I said, "well, actually, no I haven't had the surgery yet". He turned beet red and hustled out of the room. I never saw him again. It really cracked me up. I bet he tells that story to this day. I also bet he never makes that assumption again.
[Anaphylaxis is a serious, potentially life-threatening allergic response that is marked by swelling, hives, lowered blood pressure and dilated blood vessels. In severe cases, a person will go into shock. If anaphylactic shock isn't treated immediately, it can be fatal. Anaphylaxis may begin with severe itching of the eyes or face and, within minutes, progress to more serious symptoms. The condition can quickly result in an increased heart rate, sudden weakness, a drop in blood pressure, shock and ultimately unconsciousness and death.]
End of Round One
May 6, 2008 - I finished the first round of chemo today. I am done with Adriamycin and Cytoxan. The next drug will be Taxol for 12 weeks. I had an MRI and the tumor is shrinking! It's working! I have to say that people have been amazing. Keri organized people to bring meals three days a week, which has been a huge help. Sue has been here several times to help with the kids so I could rest. I've had someone give me a ride to chemo each week. Thanks to Austin, mom, Keri, Mary, Debbie, Julie, Kristen, Dacca and Auntie Debbie. I am job sharing with Bobbie and she's been wonderful, and my boss Sandy has, too. Thank you everyone! We're half way there.
Enumclaw Hospital
March 17, 2008 - I developed an infection, which became an abscess. Let's just say it was near my leg. I was in severe pain. I developed chills, vomiting and took percocet for the pain, which didn't help. I could barely walk. Ouch! The next morning I went to my regular doctor. He referred me to a surgeon that he knows personally and works with often. I went to see the surgeon immediately. He happened to be located in Enumclaw (for those not familiar with Enumclaw, it is a small lovely rural town about 15 minutes from Auburn. Enumclaw is my mom's home town. I love Enumclaw, but wouldn't choose to go there for medical care when I could go to Seattle or Tacoma). The surgeon took one look at me and said I needed surgery that day. Long story short... I was admitted to Enumclaw hospital. Enumclaw hospital has 38 beds and was built in 1949. I had surgery later in the evening and was hospitalized on IV antibiotics for four days. I really missed my kids. I have to say that I received excellent care at the hospital (especially from my favorite nurse, Kirk), but I was happy to go home. No chemo this week.
Neupogen Shots
March 10, 2008 - I have to get a blood test (CBC) done every week the day before chemo. They are watching to see if my white count is high enough to tolerate chemo. If it's not high enough I have what is called Neutropenia. When that happens I have to give myself shots to boost my white count. I'm Neutropenic this week. I have to give myself daily Neupogen shots between now and next week. I hate giving myself shots, but it must be done. Luckily, I have some great anti-anxiety medicine (Ativan) and that helps relax me so I can give the shots.
[What is Neutropenia? People can get neutropenia when treated for cancer with chemotherapy drugs. Blood is made up of billions of cells. There are many different types of blood cells, but most of the time you hear about two kinds - red cells and white cells. There are more red cells than any other type of blood cell. They are very important as they carry oxygen from your lungs to all parts of your body. White blood cells are just as important, but for a very different reason. One of their jobs is to protect you from infection. There are several kinds of white cells. Each has a special function. The most common ones are: Neutrophils, which surround and destroy bacteria in your body; and Lymphocytes, which are the key part of your body’s immune system, and defend against viruses. A third kind of blood cell, the platelet, helps your blood to clot. The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections.]
[Neupogen (filgrastim) is a drug given to patients who have neutropenia. An injection of Neupogen stimulates white blood cell production. It is a clear liquid that is usually given as a shot Use For Breast Cancer: Chemotherapy for breast cancer affects all the rapidly dividing cells in your body, including bone marrow cells, which produce white and red blood cells and platelets. Fewer bone marrow cells means less blood cells. Injections of Neupogen can boost production of your neutrophils, a special type of white blood cell that helps your body fight infection.
How Neupogen Works: Usually, your body produces a protein that stimulates the production of neutrophils. But during chemo for breast cancer, your body may not make enough of this protein. Your CBC may reveal that your neutrophil blood counts are low, and that you are neutropenic. Neupogen injections will boost production of your neutrophils.]
[What is Neutropenia? People can get neutropenia when treated for cancer with chemotherapy drugs. Blood is made up of billions of cells. There are many different types of blood cells, but most of the time you hear about two kinds - red cells and white cells. There are more red cells than any other type of blood cell. They are very important as they carry oxygen from your lungs to all parts of your body. White blood cells are just as important, but for a very different reason. One of their jobs is to protect you from infection. There are several kinds of white cells. Each has a special function. The most common ones are: Neutrophils, which surround and destroy bacteria in your body; and Lymphocytes, which are the key part of your body’s immune system, and defend against viruses. A third kind of blood cell, the platelet, helps your blood to clot. The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections.]
[Neupogen (filgrastim) is a drug given to patients who have neutropenia. An injection of Neupogen stimulates white blood cell production. It is a clear liquid that is usually given as a shot Use For Breast Cancer: Chemotherapy for breast cancer affects all the rapidly dividing cells in your body, including bone marrow cells, which produce white and red blood cells and platelets. Fewer bone marrow cells means less blood cells. Injections of Neupogen can boost production of your neutrophils, a special type of white blood cell that helps your body fight infection.
How Neupogen Works: Usually, your body produces a protein that stimulates the production of neutrophils. But during chemo for breast cancer, your body may not make enough of this protein. Your CBC may reveal that your neutrophil blood counts are low, and that you are neutropenic. Neupogen injections will boost production of your neutrophils.]
Sunday, October 5, 2008
Starting Chemo
January 27, 2008 - Hats, Hats and More Hats! My friend Caryn brought over a huge assortment of hats and fun earrings for me. She is awesome! I have a huge box of hats now. The kids love trying them all on. She brought a purple cowboy hat, fake fur hat, sun hats, fun caps, every kind of hat you could imagine. I am set. I have knitted a few hats. Dacca, Sallie, Dana, Karen & Kay knitted hats for me. I have a growing collection of baseball hats (which I love to wear) and bandanas to wear under the hats. Auntie Deb brought back two Minnie hats from Disneyland. Mom ordered some hats for me, Judy made some special ones and Sue sent a sparkly pink one.
February 2, 1008 - Went and got my hair cut really short. I couldn't imagine seeing all of my long hair fall out. I don't look like myself. I've had long hair for such a long time. Debbie went with me. We went out to lunch, shopping and had a pedicure. Fun day. I look in the mirror and don't recognize myself. I can't imagine being bald!!
February 12, 2008 - First day of chemotherapy. My first round of chemo was weekly for 12 weeks. I took daily oral Cytoxan and had a weekly infusion of Adriamycin. Adria is red. It looks like Hawaiian Punch or red Kool-Aid. I received anti-nausea medications and steroids before the infusion. During the infusion I listened to the chemo play list on my ipod. When the "red stuff" started going in I played Onward Christian Soldiers and visualized an army going in through my veins to kill the cancer. It was a surreal experience. It seemed like I was doing what had to be done, but could this really be happening to me? I had to be strong and fight. After chemo I came home and slept for a while. All in all it's not too bad so far.
[Cytoxan is an anti-cancer chemotherapy drug. The side effects of Cytoxan and their severity depend on how much of the drug is given. In other word, high doses may produce more severe side effects: low blood counts, hair loss, nausea and vomiting, poor appetite, loss of fertiliity, discoloration of skin and nails, mouth sores, bladder irritation, diarrhea, slight risk of developing blood cancer such as leukemia.)][Adriamycin is a trade name for Doxorubicin. Adriamycin is an anti-cancerchemotherapy drug. This medication is classified as an "anthracycline antiobiotic." Adriamycin is given through a vein by intravenous injection (IV). Adriamycin is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives adriamycin must be carefully trained. If you notice redness or swelling at the IV site while you are receiving adriamycin, alert your health care professional immediately. Side effects of Adriamycin: Pain along the site where the medication was given, nausea or vomiting, low blood counts, increased risk for infection, anemia and/or bleeding, mouth sores, hair loss, urine may appear red, red-brown, orange or pink from the color of the medication for one to two days after you receive a dose, darkening of the nail beds, problems with fertility. A serious but uncommon side effect of adriamycin can be interference with the pumping action of the heart. You can receive only up to a certain amount of adriamycin during your lifetime. This "lifetime maximum dose" may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs. Your doctor will check your heart function before you may take any adriamycin and will monitor your heart closely during your treatment. Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended. There is a slight risk of developing a blood cancer such as leukemia years after taking adriamycin.]
February 15, 2008 - Wig shopping with Julie. We tried on tons of wigs. It was fun and hilarious. The lady at the wig store was very cool and she'd obviously dealt with cancer patients before. I tried on cool purple one that I thought would be fun for Husky games. We tried on all kinds. I wound up with one that looked really close to my regular hair. It's human hair and I like it, but don't know how much I'll wear it. It seems weird to one day wear a hat or scarf then the next day wear the wig. Nathan is glad I have a wig and we'll see if he likes it. Maybe I'll wear it if we go out to dinner or something. Anyway, it's good to have it as an option.
February 19, 2008 - MUGA Scan on my heart. A test to check for heart damage prior to starting the Adriamycin, which can cause heart damage. The scan turned out fine.
February 26, 2008 - I've had three weeks of chemo so far. My hair has started falling out. It's happening fast. One day I put a brush through it and the brush was full of hair. Time to shave my head! Yikes!! What will I look like bald? I don't want to know... Debbie came over. We had a shot of tequila and she shaved my head for me. What a friend! In the end, it's just hair. Saving my life is what's really important. I know that, but I sure do miss my hair.
February 2, 1008 - Went and got my hair cut really short. I couldn't imagine seeing all of my long hair fall out. I don't look like myself. I've had long hair for such a long time. Debbie went with me. We went out to lunch, shopping and had a pedicure. Fun day. I look in the mirror and don't recognize myself. I can't imagine being bald!!
February 12, 2008 - First day of chemotherapy. My first round of chemo was weekly for 12 weeks. I took daily oral Cytoxan and had a weekly infusion of Adriamycin. Adria is red. It looks like Hawaiian Punch or red Kool-Aid. I received anti-nausea medications and steroids before the infusion. During the infusion I listened to the chemo play list on my ipod. When the "red stuff" started going in I played Onward Christian Soldiers and visualized an army going in through my veins to kill the cancer. It was a surreal experience. It seemed like I was doing what had to be done, but could this really be happening to me? I had to be strong and fight. After chemo I came home and slept for a while. All in all it's not too bad so far.
[Cytoxan is an anti-cancer chemotherapy drug. The side effects of Cytoxan and their severity depend on how much of the drug is given. In other word, high doses may produce more severe side effects: low blood counts, hair loss, nausea and vomiting, poor appetite, loss of fertiliity, discoloration of skin and nails, mouth sores, bladder irritation, diarrhea, slight risk of developing blood cancer such as leukemia.)][Adriamycin is a trade name for Doxorubicin. Adriamycin is an anti-cancerchemotherapy drug. This medication is classified as an "anthracycline antiobiotic." Adriamycin is given through a vein by intravenous injection (IV). Adriamycin is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives adriamycin must be carefully trained. If you notice redness or swelling at the IV site while you are receiving adriamycin, alert your health care professional immediately. Side effects of Adriamycin: Pain along the site where the medication was given, nausea or vomiting, low blood counts, increased risk for infection, anemia and/or bleeding, mouth sores, hair loss, urine may appear red, red-brown, orange or pink from the color of the medication for one to two days after you receive a dose, darkening of the nail beds, problems with fertility. A serious but uncommon side effect of adriamycin can be interference with the pumping action of the heart. You can receive only up to a certain amount of adriamycin during your lifetime. This "lifetime maximum dose" may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs. Your doctor will check your heart function before you may take any adriamycin and will monitor your heart closely during your treatment. Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended. There is a slight risk of developing a blood cancer such as leukemia years after taking adriamycin.]
February 15, 2008 - Wig shopping with Julie. We tried on tons of wigs. It was fun and hilarious. The lady at the wig store was very cool and she'd obviously dealt with cancer patients before. I tried on cool purple one that I thought would be fun for Husky games. We tried on all kinds. I wound up with one that looked really close to my regular hair. It's human hair and I like it, but don't know how much I'll wear it. It seems weird to one day wear a hat or scarf then the next day wear the wig. Nathan is glad I have a wig and we'll see if he likes it. Maybe I'll wear it if we go out to dinner or something. Anyway, it's good to have it as an option.
February 19, 2008 - MUGA Scan on my heart. A test to check for heart damage prior to starting the Adriamycin, which can cause heart damage. The scan turned out fine.
February 26, 2008 - I've had three weeks of chemo so far. My hair has started falling out. It's happening fast. One day I put a brush through it and the brush was full of hair. Time to shave my head! Yikes!! What will I look like bald? I don't want to know... Debbie came over. We had a shot of tequila and she shaved my head for me. What a friend! In the end, it's just hair. Saving my life is what's really important. I know that, but I sure do miss my hair.
Diagnosis
January 5, 2008 - I found a lump on the left side of my chest. It was like a small marble near the surface of the skin. I didn't think it was breast related at all. I thought maybe it was a cyst or growth or something, but not cancer. Still, I thought I better get it checked out.
January 8, 2008 - I had an appointment with my doctor to follow up on physical therapy I was receiving for my back related to a car accident. While I was there I mentioned the lump. He did a breast exam, didn't seem worried, but referred me for a mammogram.
January 9, 2008 - I had my first mammogram. The radiologist said the lump looked "suspicious" and followed up with an ultrasound the same day. It was determined to be a 1.5 cm suspicious mass. I could clearly see it on the ultrasound. It was a black jagged blob, surrounded by fog (edema/fluid, swelling). She said it needed to be biopsied. I started to worry. What if it's cancer??
January 10, 2008 - I had a needle core biopsy. It hurt and I was sore for the weekend. The cute pink ice packs really helped. I kept thinking that it was worth it to know what we were dealing with.
January 14, 2008 - Monday moring as usual. We got the kids off to school, Austin headed out for work and I was getting ready for a meeting later in the morning. I was sitting at the diningroom table, going over a client file. The phone rang. It was my doctor. He asked if I could please come in to the office later that morning. I asked if he had received the biopsy report. He said he had received it but wanted to talk to me about it later in person. I asked him to please just tell me... He said it was "an invasive ductal cancer". SHIT! Cancer????!!!! I was in shock. I called Austin. I told him he needed to come home. I said it was cancer. He turned around and came home. He walked in the door and just held me as I broke down. We both cried. Cancer? No way. How could this be happening to us? I kept thinking, wasn't it enough to have a special needs child? How am I going to deal with cancer? What will happen if I die? I thought I was going to die soon. My mind was racing. We calmed down a little, went to see the doctor. He went over the pathology report with us and prayed with us. We all cried. He recommended a surgeon and oncologist. The cancer journey began.
Pathology Report: Left Breast 11 0'clock, core biopsy Invasive Ductal Carcinoma, with the following features: Modified Bloom-Richardson grade III of III (tubule formation score 3, nuclear pleomorhism score 3, mitotic rate score 3).
January 15, 2008 - Austin and I met with the surgeon. My mom joined us too. We covered a lot of information. The surgeon's nurse gave me a copy of Dr. Susan Love's Breast Book, which would prove to be an excellent source of information. We talked about scheduling the lymph node biopsy and putting a port in. I was in new territory. There was so much I didn't understand and felt like I was asking stupid questions.
January 25, 2008 - First appointment with the oncologist. He said my tumor is Type IIa, Grade 3 and triple negative, which is the most aggressive kind. He recommended doing chemotherapy first, then surgery. This is known as neoadjuvent chemotherapy. He also ordered an MRI.
January 29, 2008 - PET Scan. They scanned my whole body to see if the cancer was in my bones or had spread.
January 30, 2008 - PET Scan looks good.
January 31, 2008 - Breast MRI. The tumor measured out at 4 cm. It had increased from 1.5 cm. I could tell it had grown, it was so close to the surface of the skin. It felt like an egg under my skin. I am sure it felt bigger because it was surrounded by fluid and seemed swollen, but it had also grown.
February 5, 2008 - Pre-op appointment with the surgeon. [When discussing the surgical treatment of your breast cancer with you, your surgeon will discuss whether or not your breast cancer is invasive. Breast cancers can be confined within the lining of the endothelial cells along the breast duct (in-situ cancers); or it can start to spread beyond the breast duct (invasive cancers). This is important because the blood vessels and lymph vessels that potentially spread the cancer beyond the breast run along this area. If the cancer has spread beyond the lining of the breast duct, and is picked up by the blood vessels or lymph vessels, then it can potentially spread elsewhere in the body, or “metastasize.” Lymph vessels are small channels that drain all the tissues of the body. Lymph vessels drain excess fluid back into your circulation. As lymph fluid drains back into your circulation, it goes through lymph nodes. Lymph nodes are collections of lymph tissue that have a high concentration of white blood cells, the cells in your body that fight infection and cancer. The lymph vessels of the breast drain into the lymph nodes in the axilla (underneath the arm), and sometimes into the lymph nodes along the sternum, (or breastbone), and above the clavicle (collarbone).]
February 7, 2008 - Surgery for sentinel node biopsy and port-a-cath placement. [A sentinel lymph node biopsy is a new technique. This was developed as a test to determine if breast cancer has spread to the lymph ducts or lymph nodes in the axilla without having to do a traditional axillary lymph node dissection. Experience has shown that the lymph ducts of the breast usually drain to one lymph node first, before draining through the rest of the lymph nodes underneath the arm. That first lymph node is called the sentinel lymph node. That is the lymph node that helps sound the warning that the cancer has spread. Lymph node mapping helps identify that lymph node, and a sentinel lymph node biopsy removes only that lymph node. The sentinel lymph node is identified in one of two ways, either by a weak radioactive dye (technetium-labeled sulfur colloid) that can be measured by a hand held probe, or by a blue dye (isosulfan blue) that stains the lymph tissue a bright blue so it can be seen. Most breast cancer surgeons use a combination of both dyes.] [The oncologist may recommend that you have a port or "port-a-cath" inserted in your upper chest wall (the space between your collarbone and your breast) to make chemotherapy easier, safer and more comfortable. The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. There are several benefits to having a port: No need to find a vein every time you receive chemo. A special needle fits right into the port, so all you feel is the stick. The medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body. Blood for blood tests can also be taken from the port.]
February 8, 2008 - Lymph nodes are negative!! This is great news.
January 8, 2008 - I had an appointment with my doctor to follow up on physical therapy I was receiving for my back related to a car accident. While I was there I mentioned the lump. He did a breast exam, didn't seem worried, but referred me for a mammogram.
January 9, 2008 - I had my first mammogram. The radiologist said the lump looked "suspicious" and followed up with an ultrasound the same day. It was determined to be a 1.5 cm suspicious mass. I could clearly see it on the ultrasound. It was a black jagged blob, surrounded by fog (edema/fluid, swelling). She said it needed to be biopsied. I started to worry. What if it's cancer??
January 10, 2008 - I had a needle core biopsy. It hurt and I was sore for the weekend. The cute pink ice packs really helped. I kept thinking that it was worth it to know what we were dealing with.
January 14, 2008 - Monday moring as usual. We got the kids off to school, Austin headed out for work and I was getting ready for a meeting later in the morning. I was sitting at the diningroom table, going over a client file. The phone rang. It was my doctor. He asked if I could please come in to the office later that morning. I asked if he had received the biopsy report. He said he had received it but wanted to talk to me about it later in person. I asked him to please just tell me... He said it was "an invasive ductal cancer". SHIT! Cancer????!!!! I was in shock. I called Austin. I told him he needed to come home. I said it was cancer. He turned around and came home. He walked in the door and just held me as I broke down. We both cried. Cancer? No way. How could this be happening to us? I kept thinking, wasn't it enough to have a special needs child? How am I going to deal with cancer? What will happen if I die? I thought I was going to die soon. My mind was racing. We calmed down a little, went to see the doctor. He went over the pathology report with us and prayed with us. We all cried. He recommended a surgeon and oncologist. The cancer journey began.
Pathology Report: Left Breast 11 0'clock, core biopsy Invasive Ductal Carcinoma, with the following features: Modified Bloom-Richardson grade III of III (tubule formation score 3, nuclear pleomorhism score 3, mitotic rate score 3).
January 15, 2008 - Austin and I met with the surgeon. My mom joined us too. We covered a lot of information. The surgeon's nurse gave me a copy of Dr. Susan Love's Breast Book, which would prove to be an excellent source of information. We talked about scheduling the lymph node biopsy and putting a port in. I was in new territory. There was so much I didn't understand and felt like I was asking stupid questions.
January 25, 2008 - First appointment with the oncologist. He said my tumor is Type IIa, Grade 3 and triple negative, which is the most aggressive kind. He recommended doing chemotherapy first, then surgery. This is known as neoadjuvent chemotherapy. He also ordered an MRI.
January 29, 2008 - PET Scan. They scanned my whole body to see if the cancer was in my bones or had spread.
January 30, 2008 - PET Scan looks good.
January 31, 2008 - Breast MRI. The tumor measured out at 4 cm. It had increased from 1.5 cm. I could tell it had grown, it was so close to the surface of the skin. It felt like an egg under my skin. I am sure it felt bigger because it was surrounded by fluid and seemed swollen, but it had also grown.
February 5, 2008 - Pre-op appointment with the surgeon. [When discussing the surgical treatment of your breast cancer with you, your surgeon will discuss whether or not your breast cancer is invasive. Breast cancers can be confined within the lining of the endothelial cells along the breast duct (in-situ cancers); or it can start to spread beyond the breast duct (invasive cancers). This is important because the blood vessels and lymph vessels that potentially spread the cancer beyond the breast run along this area. If the cancer has spread beyond the lining of the breast duct, and is picked up by the blood vessels or lymph vessels, then it can potentially spread elsewhere in the body, or “metastasize.” Lymph vessels are small channels that drain all the tissues of the body. Lymph vessels drain excess fluid back into your circulation. As lymph fluid drains back into your circulation, it goes through lymph nodes. Lymph nodes are collections of lymph tissue that have a high concentration of white blood cells, the cells in your body that fight infection and cancer. The lymph vessels of the breast drain into the lymph nodes in the axilla (underneath the arm), and sometimes into the lymph nodes along the sternum, (or breastbone), and above the clavicle (collarbone).]
February 7, 2008 - Surgery for sentinel node biopsy and port-a-cath placement. [A sentinel lymph node biopsy is a new technique. This was developed as a test to determine if breast cancer has spread to the lymph ducts or lymph nodes in the axilla without having to do a traditional axillary lymph node dissection. Experience has shown that the lymph ducts of the breast usually drain to one lymph node first, before draining through the rest of the lymph nodes underneath the arm. That first lymph node is called the sentinel lymph node. That is the lymph node that helps sound the warning that the cancer has spread. Lymph node mapping helps identify that lymph node, and a sentinel lymph node biopsy removes only that lymph node. The sentinel lymph node is identified in one of two ways, either by a weak radioactive dye (technetium-labeled sulfur colloid) that can be measured by a hand held probe, or by a blue dye (isosulfan blue) that stains the lymph tissue a bright blue so it can be seen. Most breast cancer surgeons use a combination of both dyes.] [The oncologist may recommend that you have a port or "port-a-cath" inserted in your upper chest wall (the space between your collarbone and your breast) to make chemotherapy easier, safer and more comfortable. The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. There are several benefits to having a port: No need to find a vein every time you receive chemo. A special needle fits right into the port, so all you feel is the stick. The medication goes right into the main blood supply entering the heart, so it can be sent quickly and efficiently to all parts of the body. Blood for blood tests can also be taken from the port.]
February 8, 2008 - Lymph nodes are negative!! This is great news.
Subscribe to:
Posts (Atom)
