Thursday, December 31, 2009

Imagery Exercise for Expressing Anger

I've been thinking a lot about the "fire" dream. I wrote that to see fire in your dream can symbolize destruction, passion, desire, illumination, transformation, enlightenment, or anger. Since anger and resentment are a common response to cancer, I'm wondering if it signifies anger? I found this imagery exercise for expressing anger that uses fire! Imagery and visualization are powerful tools. It allows you to create a mental picture that expresses the anger and allows you to experience relief from it. The exercise goes like this:
Imagine that you are building a fire. Pile up the kindling, put in some paper. If you like, take a little charcoal fluid and flame it up. See the fire burning and burning. It's becoming a huge fire. And you know that it's your anger. Experience your anger. Be the fire. Feel the fire inside you raging. What does it feel like to be the fire? What color are you? What other details do you notice? Now, throw a little water on it. It's sizzling. Throw some more water on it. It's so big you may need to bring several hoses. Finally, the fire is beginning to go out. There's still some smoldering. Put it all out. It's completely out. Now dig a hole. Scoop up all the ashes, put them in the hole, cover the hole with dirt, and plant your favorite flowers.
After you've completed the exercise, take some quiet time to think about how you felt when you were going through it, and how you feel now. You might want to write about your feelings in your journal, express them to a friend, or use them as the basis for a poem, song or picture.
I haven't tried this exercise yet, but when I do I will report back to you all!

Wednesday, December 30, 2009

Burning down the house

The other night I dreamed that I was in my childhood home and my friend Karen was with me. I started a bonfire inside the house (Why? I have no idea!) which, of course, set the house on fire, which then spread to the neighbor's house. We got out safely and the firefighters got the fires under control relatively quickly. So, I wondered what this dream could mean. Depending on the context of your dream, to see fire in your dream can symbolize destruction, passion, desire, illumination, transformation, enlightenment, or anger. It may suggest that something old is passing and something new is entering into your life. Your thoughts and views are changing. In particular, if the fire is under control or contained in one area, then it is a metaphor of your own internal fire and inner transformation. It also represents your drive, motivation, and creative energy. Alternatively, the dream may be warning you of your dangerous or risky activities. You are literally "playing with fire".
To dream that a house is on fire, indicates that you need to undergo
some transformation. If you are setting a fire to something or even to yourself, then it indicates that you are undergoing some great distress. You are at the brink of desperation and want to destroy something or some aspect of yourself. To see a firefighter in your dream, represents your higher Self. You are experiencing a period of cleansing and purification. The firefighter is the symbol of a true hero and of hope. To see something burning, indicates that you are experiencing some intense emotions and/or passionate sexual feelings (Yeah, right). There is some situation or issue that you can no longer avoid and ignore. Alternatively, it may suggest that you need to take time off for yourself and relax. Consider also how you may be feeling "burned out" or "burned up". To see a bonfire in your dream, suggests that you need to find a new path and set forth toward a different goal. It is time to freely express yourself and let go of the old outdated ways of thinking.
To see your childhood friend in your dream, signifies regression into your
past where you had no responsibilities and things were much simpler and
carefree. You may be wanting to escape the pressures and stresses of
adulthood. Consider the relationship you had with this friend and the
lessons that were learned. Alternatively, the childhood friend may be
suggesting that you have been acting in a childish manner and you need
to start acting like an adult. She better not be suggesting that, although
I have felt a little whiny lately! So, my amateur dream interpreters,
what do you think it means?

Tuesday, December 29, 2009

Young Survival Coalition

Tonight I attended the local Young Survival Coalition meeting. Young Survival Coalition (YSC) is the premier international organization dedicated to the critical issues unique to young women and breast cancer. YSC works with survivors, caregivers and the medical, research, advocacy and legislative communities to increase the quality and quantity of life for women diagnosed with breast cancer ages 40 and under (although they let us old folks attend too). Today, the YSC is a growing international group of thousands of survivors and supporters. Embracing the motto, "Action, Advocacy, Awareness," members attend conferences; lobby federal and state legislators; speak at universities, colleges, and health fairs; and run an annual awareness campaign targeted at the medical community - encouraging doctors and researchers to focus more resources on this underserved segment of the population. The YSC also strives to educate and support young women living with a diagnosis of breast cancer. Is this right up my alley or what?
The local affiliate is comprised of some really cool women, from survivors to newly diagnosed to those of us currently in treatment. We met at Jupiter's at the Crossing to enjoy appetizers and pizza. We discussed the upcoming Susan G. Komen 3-day for the Cure walk scheduled for August in Chicago. Some of the coalition members are planning to either walk it or volunteer to be a crew member. I'd consider walking it but to do so each individual has to raise $2300. So, dear friends, who would be willing to donate should I decide to register?

Monday, December 28, 2009

Take time every day to laugh, to think, to cry

Still in this weird funk! I think I'm just tired. While it has been a long few months, it hasn't as time moves so fast now. All we have is now. I think I'm worried about being up to the challenge of running AWF. The bad ass, take-no-prisoners person you all know and love has taken me 25 years to create. This persona is the one you have been allowed to see. She is strong and capable; there is nothing she can't do. The one who writes this blog tends to be a little more vulnerable with definite weaknesses. In this position (Executive Director), I feel like I must be "on" all the time. I have to guard against stupid mistakes as it takes 20 years to build a reputation and only 5 minutes to destroy it! I think that's what I miss most about riding (the Harley) as that was a time I didn't have to be "on". I could just be Tami. It was a very freeing time. I've been thinking a lot about my career and what I have accomplished. While there have been some very defining moments and I have enjoyed the ride, I worry that I will not have the stamina to continue the "good fight". To that end, I have been reading some inspirational accounts of folks who battled cancer and what they accomplished whether they beat cancer or not. One of the stories I found was about Jim Valvano, who died of bone cancer.
James (Jim) Thomas Anthony Valvano (March 10, 1946 – April 28, 1993),
nicknamed Jimmy V, was a college basketball coach. Shortly before his death, he gave a speech and noted the following: "To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special." Shortly before his death he established the Jimmy V Foundation.
The Jimmy V Foundation is a charitable organization dedicated to saving lives by helping to find a cure for cancer. The foundation seeks to make a difference by generating broad-based support for cancer research and by creating an urgent awareness among all Americans of the importance of the war against cancer. The V Foundation performs these dual roles through advocacy, education, fundraising, and philanthropy. Its motto is “Don’t give up. Don’t ever give up.” What a wonderful legacy. I can only hope my legacy will be as good!

Sunday, December 27, 2009

My aura's lacking

Since I'm still in this weird mood, I decided to have my aura read. Many alternative healing practitioners use Color therapy healing rooms to assist in balancing the energy of the color or colors we are lacking in. Colors bring about emotional reactions within us and therefore can be used to assist us in identifying our emotional, physical and spiritual needs. As individuals our personalities, likes and dislikes differ and so our reactions to colors will differ also. We may not always be attracted to only one color, but many have found that when we can identify visually with a specific color, we can begin adjusting our state and frame of mind in order to allow for a more positive flow of energy in our life.
I am lacking the color black in my aura. A lack of black in my aura means I may be feeling overly sensitive and emotional (have I not been saying that?). Black protects us from negativity. I'm told I should consider taking time to meditate, breathe deeply and relax. I should try to be motionless and emotion free. Apparently I can achieve the change I desire by getting out of my own way! Also, during a tarot card reading the Four of Cups card came up in the "Emotions" position. This signifies the current state of your emotional self. The Four of Cups signifies a period of rest in your life and dissatisfaction with material gains. Re-evaluation of your goals. Need I say more?

Saturday, December 26, 2009

Still a Reformer?

On my quest to find myself, I keep taking these personality and career quizzes waiting for one of them to tell me that there is a rock star or artist inside me just waiting to emerge but it never happens. They all keep telling me that I'm right where I belong. So, why am I not feeling that these days? My emotions are so intertwined with work and I seem to be taking everything personally these days. That is no way to conduct business. This is a new experience for me as I am usually so good about keeping the emotion out of it.
According to Uri Geller's Life Signs, I am a Reformer. The Reformer likes to do things the right way. She is opinionated, judgmental and quick to anger if rules are broken. Critical of herself even more than of others, the Reformer strives to be at her best and sets high standards. Self-knowledge is essential. The Reformer will exhibit the best in human nature to cope with a difficult, essential role (such as a lawyer, police officer or social worker). The Reformer is not seeking stardom as she will never care for the good opinion of the world if she feels that the world happens to be in the wrong. So why am I chafing at the role I have been so used to? Why is it not feeling right? Uri says that an embittered Reformer can be dangerous. Should I be concerned about this or is it just a "holiday funk" I'm in?

Friday, December 25, 2009

Discombobulation

Merry Christmas! I hope you all had a nice holiday. What is it about the holidays that brings introspection? I'm feeling a bit discombobulated today. I'm not sure exactly why. Maybe it's because I've been doing some soul searching. I've been asking myself this question: What do I want to look back on in my life and say that I never regretted? I feel like I'm trying to "find" myself. Finding oneself is a journey, not a destination. A lot of it is trial and error. I guess that's the price you pay in return for the satisfaction you receive. But more often than not, you hit a bump in the road, and sometimes fall flat on your face. One must be prepared to understand and accept that this is a part of the process, and commit to getting right back up and starting over. It's not going to be easy.
One thing that is suggested is to be forgiving and learn to let go. That's how I feel about my relationship with Mike. Nothing's the same since his accident. The past 4 1/2 years have been about dealing with the aftermath of his accident. I've been waiting for the Mike I know and love to "return" rather than being willing to accept what is. Somehow I got lost in the process. Letting go does not always mean leaving them. Letting go can also mean being with them, caring for them, but not allowing them to drain you, hurt you or not give you the ability to live your own life. My question is this, should I be trying to "find" myself at the same time I am on this cancer journey? Is it even possible?


Thursday, December 24, 2009

God Bless Dr. Scholl

My hands are killing me! My skin is dry and cracked and very painful. The skin is the largest organ of the human body and performs several important functions, such as protecting the body from external toxins and facilitating waste elimination. When a person’s immune system is compromised by an illness such as cancer, the skin is unable to undergo its natural reparative process - the visible result being dry, rough skin. Radiation and chemotherapy further dry out the skin, and without sufficient water the skin is unable to regenerate itself properly. The result is chronically dry, unhealthy skin that is vulnerable to further damage. A slight tear in the skin can lead to infection in a patient whose immune system is currently suppressed - a potentially dangerous combination. Therefore, skin needs to be kept as moist as possible during treatment. The prevalence of moisture is essential for healing, which can also relieve dry itchy skin and prevent peeling and flaking. being comfortable in one's own skin means more time and energy can be focused on what's most important - a full recovery.
So, I bought myself a Dr. Scholl's Quick Heat Paraffin Wax Spa to dip my hands! It works by dipping you hands (or feet) in the melted wax 3-4 times, coating them with the wax, placing a baggie over them and slipping on the mitts to keep the warmth inside. By doing this the parafin softens your hands (feet). After approx. 10-15 min. you just slide the wax off your hands and they feel extremely soft. It brought me some soothing relief from my dry/chapped/sore hands. This treatment has been used in spas and physical therapy departments in hospitals as the penetrating heat from the melted wax can relief pain due to arthritis, tendonitis, muscle spasms, aftercare for breaks/sprains, and joint stiffness. The dipping process can be somewhat messy but it sure felt good. After dipping my hands, I slathered them with Lubriderm Extra Dry Skin lotion. While still sore, they feel much better. I'll have to do it again tomorrow!



Wednesday, December 23, 2009

Isis: Protector and Empowerer

Today, I was able to spend a little time with some old friends (Eunice and Gerard) as they were passing through CU. They gave me this cool gift, a necklace with the Egyptian Goddess, Isis. It is just the neatest thing! For those of you who don't know, Isis is the goddess of rebirth. She remains one of the most familiar images of empowered femininity. She was worshipped as the goddess of medicine and wisdom. She is a winged goddess often portrayed with wings outstretched in a protective position. As a winged goddess, she brought the heavenly scent with her through the land, leaving lingering scents of spices and flowers in her wake. {Eunice's way of saying I don't stink! LOL}.
Isis spent time among her people, teaching women necessary skills including how to tame men enough to live with them (well somebody had to!). Isis has many gifts to share with modern women. She embodies the strengths of the feminine, the capacity to feel deeply about relationships, the act of creation, and the source of sustenance and protection. At times Isis could be a clever trickster empowered by her feminine wiles rather than her logic or brute strength, but it is also the goddess Isis who shows us how we can use our personal gifts to create the life we desire rather than simply opposing that which we do not like.
The myths of Isis and her husband, Osiris, caution us about the need for occasional renewal and reconnection in our relationships. Isis also reminds us to acknowledge and accept the depths of our emotions and our own limitations. Do you think they are trying to tell me something? So, a big shout out to Eunice and Gerard for the perfect gift. I will wear it during chemo for empowerment and treasure it always. Thanks, I love ya both!

Tuesday, December 22, 2009

Yes, Virginia, chemo brain is real!

I'm sure not getting much work done so far this week but "planning" my to-do list for next week. LOL! I'm beginning to wonder if I should be working during treatment as I've felt so out of it lately. While some people choose to take some time off from work during treatment for breast cancer, others decide to work through treatment. I, obviously, have chosen to work during treatment. Unfortunately, my treatments have side effects that sometimes affects my daily routine (like nausea and fatigue). Yes Virginia, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown. Cognitive effects such as memory loss and lack of concentration can have an impact on work. They suggest keeping a work journal. In your journal, you may want to:

  • Record meetings and appointments with time and date, who the appointment was with, and what was discussed. Keep track of work meetings and doctor's appointments.
  • Jot down important conversations. Make notes that include ideas you want to remember and decisions made during the conversation. If you have regular meetings at work, bring your journal for note-taking.
  • Track deadlines. List when things are due, and keep a timeline of goals met along the way.
  • Make a to-do list and add to it each time you think of something new. Check off items as you accomplish them.
  • Set realistic goals for tasks to be completed. Try to stick to your goals if you can, but don't push yourself too hard.
  • Keep a written schedule to help remember your work days and days off.
Hell, I had to do that before I even started chemo! What does that say about me?

Monday, December 21, 2009

Bill chose not to inhale, I'd like the same choice!

Since I've been complaining about no appetite, an old friend suggested "medical marijuana". Chemotherapy comes with some pretty common, and unpleasant, side effects. Many patients lose their desire to eat and experience nausea and vomiting. Still others develop a condition called cachexia (loss of body weight and muscle mass, and weakness that may occur in patients with cancer, AIDS, or other chronic diseases) in which they lose a significant portion of their body weight, both fat and muscle. This condition, especially when combined with the loss of appetite and nausea, can cause those being treated for cancer to feel physically weak and emotionally drained. The National Cancer Institute (NCI) explains that maintaining an adequate weight and absorbing sufficient nutrients can help patients feel, look, and function better, and may even help their bodies tolerate cancer therapy.
Traditionally, patients are given drugs called antiemetics (a drug that prevents or reduces nausea and vomiting) in tandem with their chemotherapy in order to reduce nausea and increase appetite. But not all people respond adequately to these medications. That's where marijuana comes in. It has been know for years that THC (delta-9-tetrahydrocannabinol), the main chemical component of marijuana, tends to stimulate one's appetite. In fact, THC has been available since the mid-1980s for cancer patients in a synthetically engineered capsule form. This medication, known as dronabinol in the medical world, has been shown to reduce nausea, increase appetite, and help patients gain weight. Right now there is a study under way, supported by the NCI, which is designed to measure the impact THC therapy, as dronabinol, has on the management of these symptoms in cancer patients.
Interestingly, some people feel that this form of THC is not as effective as marijuana would be in its natural, plant form. This might be because one of the chemical components of marijuana, cannabidiol, is not contained in the prescription pills, and this compound has anti-anxiety effects that some patients find helpful. Therefore, there are those doctors, patients, and others who contend that the marijuana plant should be available for medical purposes. Others don't think so, arguing that smoking marijuana can have a negative effect on lung function, and that the chemicals released may contain carcinogens. While experts note marijuana's active ingredients can help some cancer patients alleviate nausea, vomiting and loss of appetite from chemotherapy, they caution that it must be weighed against the cancer risks of smoking the drug, especially in light of the availability of other, less risky alternatives. But research aimed at getting the benefits of marijuana's therapeutic ingredients while eliminating its cancer-causing potential and other undesirable effects should proceed, they add.
The American Cancer Society (ACS) is deeply concerned about the quality of life of cancer patients, and supports carefully controlled, legal clinical studies of marijuana and research to see if it can be delivered through a transdermal THC skin patch. I don't wish cancer on anyone, but if those against medical marijuana ever had chemo, I'd bet they'd understand!


Sunday, December 20, 2009

Still more fun...

At least now I'm feeling halfway human, finally. Did you know that mouth sores and sinusitis can also come along with chemotherapy? Yeah, me neither, until now! Chemo can cause sores in the mouth and throat. It can make these areas dry and irritated or cause them to bleed. Mouth sores are not only painful, but they can also become infected by the many germs that normally live in your mouth. Infections can be hard to fight during chemo and can lead to serious problems. It's important to take every possible step to prevent them. A weakened immune system from chemo can increase the risk of sinusitis. Sometimes, certain chemotherapies can irritate the mucous membrane inside the nose, mouth, vagina, etc. Bummer!
It's been a melancholy weekend. The other day I watched a small, perfect snowflake fall onto my glove and was awed by it. Today, I watched it snow and it just made me sad. Cancer has changed me permanently. I was just walking along, living my life, when I was blindsided by the diagnosis of breast cancer. Since I didn't have a family history of the disease, I'm sure I said, "It won't happen to me" at least once. But now I've learned in a very painful and immediate way that it can happen to me. I sometimes find myself overwhelmed by fears that it will reoccur. So, my awareness is double-edged. On one hand, I have become at least somewhat less concerned with trivial matters and try to carry with me a strong measure of calmness. Even on difficult days, I try to remember how fortunate I am to be alive and feel grateful. On the other hand, I also have the very real fear that any day I can wake up and encounter a loss of some sort.

Saturday, December 19, 2009

Down for the count!

I can not tell you how wiped out I am. I couldn't be too far away from the bathroom and my back was bothering me. I could not find a comfortable position to be in so I didn't make it to Missouri for Martha's memorial service. We had planned to go but it was just too much. I only hope she understands. I'd like to think she does. With every round of chemo, the fatigue and exhaustion seem to get worse. Could it be the cumulative effect of chemo? One of the hardest aspects of ongoing chemotherapy is the constant grind. There is no counting down until the end of treatment, as another round is always right around the corner. They say the cumulative effects of chemotherapy, such as fatigue, skin changes, weight gain (due to early menopause) and dry, red eyes can be trying. However, I find the emotional wear and tear to be the biggest challenge. I am still working on accepting that resting after chemo is part of my job now and that I need to do it in order to remain alive and feeling well. And I try and savour the days when I feel healthy and strong. As I always say, Time flies when you're having cancer!

Friday, December 18, 2009

Way too tired!

I have been so tired today. I'm also irritable. I'm supposed to be getting ready to head to Missouri tomorrow morning for Martha's memorial service but I'm moving slow. The laundry is in the machine and the suitcase is ready to be packed-lets just hope I can get it all accomplished by tomorrow morning. Fatigue is the most common side effect of cancer treatment, and it often hits without warning. Everyday activities -- talking on the telephone, shopping for groceries, even lifting a fork to eat -- can become daunting tasks. "Overwhelming" is the most common description used. When compared with the fatigue experienced by healthy people, cancer-related fatigue is more severe, it lasts longer, and sleep just doesn't bring relief. The causes of cancer-related fatigue are not fully known. Problems like low blood counts, sleep problems, stress, eating too little, lack of exercise, and other factors may be linked to this type of fatigue.
What are some signs of cancer-related fatigue
  • feeling tired, weary or exhausted even after sleeping
  • lacking energy to do your regular activities
  • having trouble concentrating, thinking clearly, or remembering
  • feeling negative, irritable, impatient, or unmotivated
  • lacking interest in normal day-to-day activities
  • spending less attention on personal appearance
  • spending more time in bed or sleeping
Boy, I've hit them all today!

Thursday, December 17, 2009

The hair it is a fallin' out!

Eek! My hair is starting to come out in clumps now! I've got these bald spots on top of my head now. It's pretty freaky. They warn you that it will happen like that but I shed a lot of hair in the beginning and didn't experience it coming out in clumps like this! Dr. Phreak's Freak Show here I come! This is what they say: Hair usually begins falling out 10 to 14 days after you start treatment. It could fall out very quickly in clumps or gradually. You'll likely notice accumulations of loose hair on your pillow, in your hairbrush or in your sink or shower drain. I guess the fact that I made it six weeks before it started falling out in clumps is pretty good.
One suggestion is to consider shaving your head. Some people report that their scalp feels itchy, sensitive and irritated during their treatment and while their hair is falling out. Shaving your head can reduce the irritation and save the embarrassment of shedding. Some men shave their heads because they feel it looks better than the patchy hair loss they might be experiencing. Also, a shaved head might be easier for securing a wig or hairpiece. Something to consider I guess. I didn't mind cutting and even buzzing my hair but I haven't yet wrapped my unbald head around shaving it completely! Any thoughts on the matter?
All in all I'm doing alright. Eating doesn't really interest me and the indigestion is annoying bordering on horrible. I am a little tired but not too bad. The worst thing today was the fluctuating blood sugar levels. It's been running a little high lately so they gave me insulin to inject myself with but only during "steroid" time. So I did inject myself this morning which helped it settle down. I do have to check it again tonight before bed in case I need more. I did take it easy most of the day but chose to make a live appearance on Channel 49, WCFN tonight re: domestic violence. It was a segue from the Chris Henry story. They say that there will be an investigation as to how Henry, 26, wide receiver for the Cincinnati Bengals, happened to fall from the bed of a moving pickup truck driven by his fiancée, Loleini Tonga, in Charlotte, N.C., at about noon Wednesday. Just goes to show that domestic violence can happen to anyone, anywhere at anytime. So tragic.


Wednesday, December 16, 2009

Round #3 of chemo finished

Today was Round #3 of chemotherapy. They switched it up and gave me the Herceptin first, which caused me to get nauseous before chemo was even over. I had to take additional nausea medicine immediately after the chemo. I also drank some caffeine-free peppermint tea and drank a big bottle of Gatorade Tara bought me. (Thanks Tara!) That got me through the rest of my work obligations but I needed more nausea meds when I got home. Today my blood sugar was elevated so they have prescribed me insulin to inject myself with but only when I'm on the steroids and my blood sugar is elevated. See, the fun never ends!
But the good news is that this time I will only have 2 shots to elevate my white blood cell count and they will be tomorrow and Friday. Also, I was actually hungry during chemo which hasn't happened before. Usually I can't eat during or after chemo and today I was able to do both. I was so hungry during chemo I called Bert to bring me some lunch from Strawberry Fields. (Thanks Bert!) That is Melanie's fault as she got me hooked on their Tuna Salad and Antipasto Salad! See, Melanie is always feeding me-she's a great mom.
I was reading the Parade magazine that comes in the Sunday paper and they had an article about preventing breast cancer. A report recently published by the American Institute for Cancer Research (AICR)/World Cancer Research Fund confirms that a healthy lifestyle has a dramatic impact on breast cancer. An international panel of experts from leading universities and research centers reviewed more than 900 studies of the links between diet, physical activity, and weight in cancer prevention. The report concludes: “Women can cut their risk of breast cancer by almost half if they watch their weight, exercise daily, breast-feed their babies, and limit alcoholic beverages.” Susan Higginbotham, director of research at AICR, notes: “We estimate that almost 40% of breast cancer cases in the U.S.—about 70,000 cases a year—could be prevented by making these straightforward, everyday changes.” She adds one more reminder: Do not smoke. Smoking has been shown to contribute to breast cancer and many other cancers as well. So kids, perhaps you should take the findings of this study seriously and cut your risk of breast cancer!

Chatty Cathy

For those of you who were looking for this post earlier (like last night), I apologize. I begin a round of steroids the day before chemo and take them through the day after chemo. They don't make me overeat nor do they give me "roid rage" but they do turn me into Chatty Cathy. Sadly, I know that I'm doing it but I can't stop myself! Unfortunately for Deb & Kim (my friends and colleagues at AWP) they were on the receiving end of it tonight! Now don't get me wrong, we had a great converasation. We spent a great deal of time discussing religion, yoga and eastern philosophy as Kim is a yoga instructor. So, I did not return home until 3am! I have to apologize to Deb and Kim if I kept them up too late but I thank you for letting me yak at you!
Did you know that people often think of yoga as merely a physical practice. The true measure of progress in yoga, however, is the amount of peace that is experienced in life. Yoga is an ancient eight-fold physical, mental and spiritual system. It consists of yamas and niyamas (ethical codes of conduct), asanas (steady poses), pranayama (breathing exercises), pratyahara (withdrawal from the senses), dharana (concentration) and dhyana (meditation), leading to samadhi (the superconscious state, bliss, or deep peace). The primary aim of yoga is moksha, or liberation. Yoga can lead practitioners to experience true inner freedom, peace and harmony within ourselves and with all that exists: other people, but also with the animals and plants, the ground that they walk on and the very air they breathe.
Yoga is derived from the Sanskrit word "yug," which means "to create union." The primary union in yoga is the union that exists between spirit and matter. It's believed that the link between the body, mind and spirit is the breath. The breath is the spirit that sustains life, as in "the holy spirit" of Christianity. Yoga, though having roots in Hinduism, is not a religion. The regular practice of yoga, can, however, deepen religious faith and help one progress along a spiritual or religious path. Yoga is an expression of the fundamental unity of life. The practice leads to a place inside of the self that is free from worry, fear, anxiety and ordinary worldly concerns. Yoga is not just a practice of asanas and pranayamas. Rather, these yoga practices equip a person with a heightened awareness that enables him/her to celebrate a common essence that pervades all human activities. Deb, we really have to have Kim teach us yoga!







Monday, December 14, 2009

Melt me into a paperweight for all my loved ones!

Here is my beautiful granddaughter Gabriella Marie Ruessler or "Gabby" for short. This picture was taken while we were at the funeral home making arrangements for Martha. It was nice to hear a baby's laugh during such a trying time. Hannah had her laughing so hard. She is just the sweetest thing. I think we'll keep her! We had a private viewing this afternoon before the cremation. Martha's remains will then be returned to Missouri for a memorial service. We are unsure of exactly when the service will be held. We are also unsure of my ability to travel down to Missouri as my next round of chemo is scheduled for this upcoming Wednesday.
I was surprised by the different items available to memorialize a loved one. Cremation jewelry is among the newest and most popular ways to memorialize loved ones. Cremation jewelry is, simply put, jewelry that contains some of the cremated ashes of a deceased family member or loved ones. Cremation jewelry has many names and comes in a variety of forms. Cremation jewelry is a modern take on cremation, an old practice, dating back to the days of the Vikings, the ancient Hindi societies and others who cremated (and still do cremate) their honored dead.
Traditionally, cremation memorials were simple vase-like pieces of pottery in which a cremated person's ashes were stored and displayed for generations. Such traditional cremation memorials are still common, but cremation jewelry is an important new compliment to these memorials. Families will often store most of the loved one’s ashes in a more traditional memorial, such as an urn, but then use cremation jewelry to share the remainder of the ashes among far flung relatives. Cremation jewelry, filled with tiny portions of a loved-one’s ashes assures that family memories will always be nearby for those wanting to preserve them.
Today’s cremation jewelry is available in many styles and materials, and may serve many purposes. It is as unique as the people it memorializes. Cremation jewelry comes in the form of attractive, pendants, bracelets and other items that have a small container in which a portion of the cremated ashes can be kept. This is a unique keepsake for those who would like to keep part of their loved ones close in a physical way.
Or you can get a Memory Glass Keepsake (what I refer to as a paperweight). The Memory Glass Keepsakes are hand blown and formed to a marvelouse glass sculpture in which the ashes of your loved are melted in. You can see lines and streaks of ashes in combination with colorful lines through the crystal glass. This family heirloom will memorialize your loved one in a unbelievable piece of modern glass artwork. The glass memory keepsakes require only a small amount of ashes. Many different colors can be created for different family members. I absolutely agree with cremation and I love paperweights, so go ahead and "melt" me into paperweights for all my loved ones!

Sunday, December 13, 2009

A sudden loss...

Today was Hannah's 16th birthday! It should have been a good day. But it wasn't. We found out that Mike's mom died in her sleep overnight. We are in shock – it is all so unreal. I'm not sure Mike entirely grasps this fact but we have been talking about it and trying to process it. We did not break the news to Hannah until this evening although she said that all day she felt as if something was wrong. I think she felt Martha's passing as she has the ability to tune into such spiritual things. Death seems to be all around us. I have been chasing death away every day yet here it is permeating our lives. This is the third death we've been informed of this weekend-my friend and colleague Deb learned of her grandson's maternal grandmother's passing and Hannah's friend learned of her great-grandmother's passing. Each of us must travel on our own unique journey in experiencing the loss. Each person's experience of loss will have subtle nuances that will make it unlike any other loss, but the commonality--the grief response--with the intense feelings of loss, anger, depression, loneliness, fear, frustration, desperation, these are emotions that others will have also felt, endured and survived.
Sudden loss or death creates special problems for the survivors. Many of
these problems compound the grief response. The grief response following sudden loss is often intensified since there is little to no opportunity to prepare for the loss, say good-bye, finish unfinished business or prepare for bereavement. Families and friends are suddenly forced to face the loss of a loved one instantaneously and without warning. This type of loss can generate intense grief responses such as shock, anger, guilt, sudden depression, despair and hopelessness.
I take some comfort in the fact that Martha had recently come over for a visit. If this cancer has done anything, it has brought the family closer together. I stopped harboring all the negative feelings toward several family members on both sides of the family. I knew I could not battle cancer while holding all those grudges, so I let them go. I have forgiven all the family members who I felt had "wronged" me in some way, no matter how big or how small. I am also grateful that Hannah had a chance to know her grandmother. They used to be quite close when Martha lived in the area several years back. I am sorry that we will probably not be able to attend her memorial service down in Missouri as I have chemo on Wednesday and the family is hoping to have the service by the end of the week. Unfortunately, I will not be able to travel that far right after chemo. We will have to say goodbye in our own way, right here at home. I have to believe that Martha is at peace and no longer in any sort of pain.

Saturday, December 12, 2009

Phantom Breast Pain

I have been having weird sensations in the breast that no longer exits! Not pain exactly but definite twinges. I wondered if that was common so I looked into it. In a study conducted at Johns Hopkins Hospital, researchers found that more than one third of the women who underwent mastectomy (surgical breast removal) to treat breast cancer experienced phantom breast sensations and other pain after surgery. The incidence of phantom breast pain was similar, regardless of whether or not the women had breast reconstruction after breast cancer surgery. Phantom breast pain is similar to the phenomenon of phantom limb pain experienced by persons who lose an arm or leg. Even when an arm or leg is gone, some amputees feel pain that their brain interprets as coming from the missing limb. Some patients complain of breast pain (known medically as mastalgia) that they associate with their surgery even years after the surgery occurred.
In patients who undergo mastectomy, the “limb” is their breast. This phenomenon, though not uncommon, is poorly understood. The most likely explanation is that when nerves are severed, the brain rewires the region that previously processed sensations traveling from the now damaged pathway. Adding to the confusion is the tendency of injured nerves to fire randomly in the area where the damage has occurred. Patients who experience pain in their breast or breasts before surgery are likely to continue having pain afterwards as well. This is especially true in women who experience what is known as phantom breast pain, sometimes known by the acronym PBP. If there is any good news related to mastalgia, it is that it breast pain is very seldom an indicator of cancer; a fact that should offer some comfort to women living with the fear of recurrence.
I also read that EMDR (Eye Movement Desensitization and Reprocessing), a type of trauma therapy that works wonders is good for people experiencing phantom breast pain. Because losing a breast can be traumatic, a few sessions of EMDR can help stop the pain. So, should it get worse or really become painful, I know where to turn!

Friday, December 11, 2009

life will knock you down. get back up.

The slogan on the shirt (which is hard to read in this picture) superimposed over the word survivor, says life will knock you down. get back up. I found this shirt from Live Life Solid and had to get it. If you remember, I previously blogged about feeling like a Bop Bag-you can knock me down but I'll pop back up. One of the statements in my numerology reading is "the positive aspect of your tendency to live in the here and now is that you rapidly bounce back from any type of misfortune and like a chameleon have an uncanny ability to reinvent yourself throughout your life time". That's what I'm talking about! I have always had this ability, even as a child.
The phrase “cancer survivor” entered our vernacular in 1985, in a poignant essay in the New England Journal of Medicine. The author, Dr. Fitzhugh Mullan, wrote of his own cancer and what it was like for cancer patients to pass through what he called “the seasons of survival.” Dr. Mullan stated, “Survival…begins at the point of diagnosis because that is the time when cancer patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate, and to some extent, long-term future.”
A diagnosis of breast cancer stays with you your entire life -- just ask
anyone who is a survivor. The moment you find out you have breast cancer
everything changes. Emotions and thoughts race through you. After the
initial shock wears off, you start to navigate toward your new normal,
redefining many areas of your life and making adjustments to reflect your
new physical and emotional state. I am, of course, still navigating my way
through this journey!

Thursday, December 10, 2009

My "Expression" Number

You may remember that I had a mini-numerology reading. The Expression number describes your potential natural talents and abilities - mine works out to be a 4. This is what it reads:
You believe that action speaks volumes more than words and express your respect and love for others by using a practical down-to-earth approach. You believe the greatest path to your own personal truth is to live by your personal convictions. For this reason, you are often very concerned with taking care of yourself, maintaining your belongings and property and making sure that your family and children are well cared for. You are a diligent, hard worker who is always willing to lend a helping hand but only if it is for the good of all concerned. You don't have much patience with arrogant people and you openly express your dislike of people you consider to be controlling or pushy. Sometimes this resistance expresses itself as an outright defiance of authority. You are very courageous and almost always right but often your willingness to fall on your own sword for the sake of principle also makes you "dead right."
As you can be quite rigid in your opinions, you often end up in many
arguments. One of your challenges may be to learn to express yourself
in a way that does not seem autocratic or bossy to others. Your role in society is to create structures that bring fulfillment to the highest of human aspirations. You are a wonderful planner and administrator and you know how to facilitate organizations and services that meet people's needs. You are creative, intelligent and have an attentiveness to detail that can border on obsession. Your self-discipline and willingness to practice until something is perfect also leads fours to careers in performance, especially athletics and music.
So, would you say this reading is right about me?

Wednesday, December 9, 2009

My head is cold

Not everyone loses their hair during chemotherapy treatment ... some lose all their hair, some only lose part of their hair, some people only get thinner hair. It all depends on the type of drugs that are used. Nothing can really prepare you for the trauma of reaching up to brush your hair and a huge clump comes out ... or waking up and finding wads of hair all over your bed and pillow ... or running your fingers through your hair and ending up with clumps of hair in your hand. For me it has been a lot more traumatic than I had anticipated.
Although I still have some hair, today's weather made me realize that I can no longer run around without a hat! My head, ears and neck were cold. I ran out to get the mail and my head felt like a popsicle. My head is cold even in the house now. What the hell? I wasn't prepared for that. I found the above-pictured hat on line-it says Save 2nd Base. I might have to buy it. After all, one can never have too many hats! I also found this list on line:

The Benefits of Temporary Hair Loss

NO BAD HAIR DAYS
NO SPLIT ENDS
AN OPPORTUNITY TO SEE THE REAL COLOR
A CHANCE TO TRY A NEW COLOR OR STYLE
SAVE MONEY ON SHAMPOO & CONDITIONER,HAIR CUTS, PERMS, RAZORS, AND MORE
TAKES LESS TIME TO GET READY
NO NEED TO TWEEZE EYEBROWS

It gave me a good laugh. Again, it's all about attitude (but I am not liking this cold head thing!)

Tuesday, December 8, 2009

The Secret

Ok, you've probably all heard about Rhonda Byrne's The Secret-it's a book and a DVD. As you know, I'm all for positive attitude and thinking but does the law of attraction really work? Do we get what we ask for? I certainly don't remember asking for cancer. And I do still have my moments when I wonder why God hates me so much. Do I not have the right to be angry? Do I not have the right to scream at the heavens that my life sucks? The Secret says that you are a magnet attracting to you all things, via the signal you are emitting through your thoughts and feelings. So, I'm asking for a "sucky" life when I say "My life sucks!"?
Rhonda says to open yourself up and become a powerful magnet to wellness and health from wherever you are now:
(I've added my comments in the {} parentheses!)

--Love yourself! Deeply, profoundly! Make lists of all the wonderful things about you. Add to it every day. {Ok, check, I think I'm pretty awesome}
--Free yourself of any past resentments or disappointments you may be holding about you. {Done}
--Let go of any and all resentments from the past you may be holding of everyone and everything. {Done}
--See yourself as completely well in your mind and visualize yourself doing things in a complete state of perfect health. {Can do}
--Do not speak of your illness, or disease with others. {Seriously? I'm guessing any counselor worth their degree will tell you talking about it is good therapy!}
--Love and appreciate everything and everyone, and especially yourself. {I can try}
--Know you have the power within you to heal yourself. {Yes, I believe that}
--Never criticize or blame yourself or anyone else for anything. {Yeah, right!}
--Be grateful for the wellbeing that is coming to you. {I practice gratitude pretty much daily}
--See yourself as only well. {I practice visualization - see the entry entitled Xena: Warrior Princess!}
--Be happy, knowing that in your state of happiness your body is healing itself. {I'm as happy as I can be most of the time}
--As you appreciate, as you love, as you are happy, as you are grateful, you are summoning wellbeing and it is pouring through your body and disease is vanishing in the moment. {Ok, got it}
--Laugh! Hire funny movies or recall any memories that make you laugh. Laugh your way back to health. {ABSOLUTELY!}
--Make lists every day of all the things you are grateful for, including being grateful for your healing and complete well being. {I do}
--You must do whatever you can to remove your attention from disease. {Why do you think I spend so much time at work?}
--Distract yourself from thoughts of disease, and put all of your focus and attention on doing things that make you feel good. {Again, why do you think I spend so much time at work?}
--Make your happiness the number one thing in your life. {Trying...}
--Resist nothing, love everything! {Easier said than done}
--Know that there is no such thing as incurable. {Again, I believe!}
--As you love completely and feel the joy within you, disease cannot exist. {Ok}
--Know and accept that you are perfect as you are right now. {You said it sister!}

Alright, if I can't commit 100% to all of the above, does it mean I won't regain my health? Does it mean I want to have breast cancer? Somebody call Rhonda and see if she's available to come explain this all to me.

Monday, December 7, 2009

Live Life Solid

Because life is short...
roll with it.
don't gossip.
say yes.
talk less.
listen more.
be patient.
love deeply.
hug your kids.
hug 'em again.
forgive.
face your fears.
have no regrets.
seize the day.
trust.
do right.
never waiver.
make memories.
good job.
now go make some more.
Live Life Solid.

Be solid in your thoughts. Solid in your actions. They define you.

This came from the Live Life Solid website (www.livelifesolid.com). I really like what they stand for. Now I'll be the first one to tell you that it's not always easy to be positive when fighting cancer but it is my goal to remain upbeat and positive. I do not have the strength to fight when there is negativity as it takes too much energy to be negative. The website states this: Live Life SOLIDTM was just a tiny spark of an idea a year ago. We were tired of the constant barrage of negativity and discouraging news that seemed to be everywhere...on television, the internet, in papers and magazines, on the radio, in daily conversations, at work, at home, standing in line at the store, driving in traffic and on and on. It grew old, it got depressing. We decided to take a step away from that negative energy. We decided to fan that tiny spark of an idea and do something positive with it! Slowly, the spark began to grow. The concept of bringing a brand to folks that spoke positively was formed. We worked and reworked our concepts, or, as we like to call them, our "solidisms" until that little spark roared! Our wish? That our positive energy apparel and gifts inspire people to think twice about their thoughts, their actions, and most importantly - their consequences. Our choices in life define us and inspire those around us more than we will ever know...

I am choosing how I want to live this life. I own this cancer! That's the statement I am making with the "buzz cut" and by fighting this out loud. World take notice--I am a survivor!

Sunday, December 6, 2009

Dry, cracked and splitting

Today was a lazy day as I had a headache and napped for part of the afternoon. Later, I ventured out with the new haircut just to see how people would react. While I did get some second looks, for the most part people didn't seem to notice or care. But my head and neck were cold! I'll have to make sure I have a hat and scarf on when I go out. The newest side effect is the damage to my fingernails! Though warned, I was surprised by the effects the chemotherapy drugs are having on my nails. They say nails can become brittle, dry, discolored, develop lines or ridges, and may even fall off. This is true for both fingernails and toenails. My fingernails are dry, cracked and splitting. Nail damage is a common side of chemotherapy drugs belonging to the taxane group, like docetaxel and paclitaxel, and the anthracyclines (adriamycin, for example). Taxane groups are chemotherapy drugs that work by stopping cell division, thus stopping the growth of tumors. In 2006, a study showed that 20 to 25% of nail alterations were diagnosed as side effects of chemotherapy. Cracked and brittle nails can be a painful and debilitating side-effect of treatment making simple tasks like turning the page of a magazine excruciating.
Just as chemotherapy affects your hair because of the rapidly dividing hair follicle cells, it also affects your nails. You may see a line in the nail related to the cycle of chemotherapy. This line is not permanent and grows out with the nail, usually in about six months. There may even be multiple lines and indentations reflecting the different cycles of chemotherapy. Nails may become pigmented or discolored. They may become more brittle, so they won't grow as long as they used to and may break more easily. The area around the nail bed may become dry, and your cuticles may fray. You have to be careful to never rip or peel off the loose cuticle. Only cut it carefully with a CLEAN pair of nail scissors. The nail may actually lift off the nail bed. While this, too, is reversible, you need to be very careful, for two reasons. First, the nail is more vulnerable and may fall off. Second, because the nail is not tightly bound to the nail bed, it can become a site for bacteria to enter. Practicing excellent hygiene will avoid infection.


Saturday, December 5, 2009

The GI Jane look

I absolutely could not stand my hair falling out any longer. I swear I was shedding more than the dog! It's hell to look into the mirror and see bald spots. You just can't imagine what it's like to have to clean out the drain because your hair is clogging it. Besides, it was quickly turning gray as well as being dry & brittle. So, I took matters into my own hands and asked Sam to "buzz cut" me. Here's the results! Did you know that a buzz cut is the American name for a type of haircut named after the sound of the electric razor which is used to shear the hair very closely to the scalp? I refer to it as the GI Jane look because in many countries, armed forces recruits are given buzz cuts when they enter training, originally to prevent the spread of lice. See, a bonus-no head lice!
Love to Know Hair notes that buzzed haircuts for women are a great option if you want to make a statement, are undergoing medical treatment and want to deal with hair loss on your own terms, or just want plain change. How about medical treatment and making a statement? Buzzed hair can work on anyone who chooses to wear it, and buzzed haircuts for women can be stylish and show power and confidence. I had to laugh when I saw their website which actually has this posted:
Although you may feel ready to join the head shave league, please do not take the dive into this deep water under the following circumstances:
  • After a break up
  • While you are under the influence of alcohol or drugs
  • To rebel against your parents (take that Mom!)
  • Because of peer pressure or a “dare”
  • Because you want to fit in
  • To make a statement while experiencing passive-aggressive emotions
I guess undergoing chemo is a legitimate reason. Bert says that the new haircut makes me look like my dad and my brother (nice self-esteem builder, huh?). Guess we can stop questioning my parentage now.

Friday, December 4, 2009

My "Soul" Urge

Since I have been wondering about my future and where it is headed, I had a mini-numerology reading. One's Soul Urge describes what you value or want most in life. My Soul Urge number is 5. With a 5 Soul Urge, the desire to have complete freedom to be in control of your affairs is paramount in your makeup. Happiness is having the latitude to go where you want to go and do what you want to do. Tasting life in an unrestrained fashion produces a sense of fulfillment. This is what I meant the other day when I wrote about riding all the carnival rides-life is to be experienced fully!
My report says that I love change. I live to experience as much as possible in the shortest amount of time possible. I appreciate the fact that life is short and are bound and determined to make the most of every minute I have on this earth. I have an inquisitive mind and a thirst for adventure that is only slaked by the collecting of unusual experiences and plenty of travel. In fact I can't think of a bigger disservice to one's soul than to give up one's right to pursue their heart's desire. I feel smothered by individuals who define love as giving up your heart and soul for another. My definition of love is more spiritually sophisticated. I believe that an expression of true love for another soul is the courage to let them go to pursue their own path. I intrinsically understand that without change there is no evolution. This is why somehow, I end up as being the catalyst for change in many situations. Sometimes the change that my very presence provokes is constructive and good and sometimes I am the culprit that causes complete chaos. However often my motivation for revealing secrets or destroying relationships is to clear out the old and create way for the new. That is so eerie, especially in light of what is happening at work!
Most interestingly, the reading says that I am also graced with an astounding amount of courage. Like water, I have the ability to wear down obstacles like water in a stream wears down a rock over a long period of time. Although I may appear unpredictable or unreliable to others I am actually a very complex individual who often harbors a clear vision of who they want to be and how they want to live in the future. I never think of myself as courageous -tenacious, yes, courageous, no.

Thursday, December 3, 2009

And the tarot card says...

Today fatigue hit again but the bone pain didn't and for that I am thankful. Unfortunately, the fatigue never gives fair warning-it just hits you. Patients discussing cancer-related fatigue describe it as distressing and persistent. They express a sense of tiredness and exhaustion that is in no way proportional to their activity level. Factors associated with fatigue are the presence and severity of anxiety, pain, lower sleep quality, physical inactivity, and poor performance status. This quite often translates to little desire to either work or socialize. Well at least I'm still working (probably more than I should). But when I'm fatigued, it makes me question my purpose in life.
And today's tarot card is the Ten of Pentacles which suggests that my power lies in community. I am a success and I value my reputation. I pass on and share my status, values, knowledge and ethics by example. My work here is done and I am ready to take it to the next level. I am empowered by reputation and my asset is social validation or standing. Overall, the Ten of Pentacles is a card of a good home life, security, prosperity, and happiness...on the surface. Looking closer, the family appears not to notice how lucky they are, which is the deeper message of the card. The man and woman do not walk together; rather, they pass each other briefly as they go through their mundane motions. The people in the situation take what they have, and each other, for granted. They are so wrapped up in their daily routines that they do not take the time to acknowledge the magic and blessings around them, symbolized by the ten pentacles surrounding their home. The ten pentacles also have a deeper meaning, echoing the ten Sephiroth of the Tree of Life. This serves as a reminder to look past the trappings of the material world, and seek the blessings of the soul. Just exactly how do I seek the blessings of my soul?

Wednesday, December 2, 2009

Riding all the carnival rides


I had my last shot (in a series of 3) today so this round of chemo (#2) is officially finished! Keep your fingers crossed that I don't experience that debilitating bone pain again. The doctor cut the shots down to 3 from 4 in hopes of avoiding the intense pain this time. I mentioned the peripheral neuropathy and the nurse just had to point out that statistically only a very few people experience that effect. I believe I noted the % in yesterday's blog entry. So, I informed her that I have always been that kid who just had to ride all the carnival rides in order to experience the carnival to the fullest extent. Apparently, I must experience this cancer experience to the fullest extent also. No matter how small the %, I will be in that category! I used to think that was a good trait to possess as I would experience everything life had to offer. Now I'm not so sure!
I found this quiz on www.blogthings.com called What Carnival Ride Are You? My results are You Are a Ferris Wheel. Deep down, you are a fun, whimsical, and easygoing person. You often enjoy life for what it is, and the littlest changes in course can be quite thrilling. In relationships, people tend to feel what you feel. It can be liberating at first...but after a while, the people closest to you end up feeling a little trapped. Your life has perfectly normal cycles of ups and downs. However, you can't help but sometimes feel that you're missing out on the most exciting aspects of life. You only are happy when you're experiencing the highest of highs. Your low points just make you feel depressed, restless, and bored. At your best, you feel on top of the world with a great sense of perspective. You believe that anything is possible, and that you are happily looking down on everyone else. At your worst, you feel like your life is going in circles. You often feel like you're not going anywhere. This is sometimes psychologically disorienting. And sometimes it brings on a sense of hopelessness. Wow! I think the quiz might have pegged me.

Tuesday, December 1, 2009

Knock me down and I'll "pop" right back up

I swear the fun just never ends. I have decided that I am like one of these "punching bags" that you can knock down but I pop right back up! Every time I think I've got this cancer crap under control, something else crops up. There's just no keeping me down! I will not allow the cancer to win. Now I'm dealing with chemotherapy-induced (chemo-induced) peripheral neuropathy (CIPN). It is a set of symptoms or problems caused by damage to peripheral nerves. Peripheral nerves are nerves that control the sensations and movements of our arms and legs. Chemo-induced peripheral neuropathy is caused by the chemotherapy drugs used in cancer treatment. Because chemo goes throughout the body, it can damage many different nerves, leading to neuropathy. CIPN often affects both sides of the body the same. In most cases, symptoms of CIPN start in the feet and over time start in the hands, too. I'm already experiencing the "dropsies" so I"m afraid it's also starting in my fingers. It is sometimes called "stocking/glove distribution." I am now often awoken out of a (somewhat) sound sleep by terrible pains in the soles of my feet! I jump out of bed and literally land on my feet on the floor. As much as it hurts, it also makes the cramps ease up. I then have to "walk it off" which can take several minutes.
Neuropathy occurs in approximately 10–20% of cancer patients receiving chemotherapy. Certain chemo drugs such as the carboplatin and docetaxel that I receive are more often linked to CIPN. Sometimes the symptoms of CIPN are short-term. They go away over time after treatment is done. In other cases, it can take up to 2 years for the symptoms to totally go away, and sometimes they last much longer and need long-term treatment. Severe CIPN may never go away. Yet again, I just have to be in that small number of people who experience it. Will I ever tire of being "unique"?



Monday, November 30, 2009

A new-found respect

I now have a new-found respect for the current physical limitations of my body as well as the requirements of the Residential Advocates at A Woman's Place. I "played" a Residential Advocate today, covering shift, answering calls and working with both residents and non-residents. I had forgotten exactly what that entails. It plum wore me out! My hat is off to all of you! I'm not really feeling all that bad other than being a little tired/fatigued. There is just so much to do and not enough staff to do it. We really need to get more staff back on board. How I long for what was just a few short weeks ago, "normal".
The newest wrinkle in the chemo saga is a urinary tract infection (UTI). Apparently, a lowered immune system due to chemotherapy, can cause a UTI. If you are undergoing chemotherapy, or are elderly, you may be more susceptible to the urinary tract infection spreading throughout the urinary tract to the kidneys (pyelonephritis) or into the bloodstream (urosepsis). What may begin as a mild signs of a urinary tract infection could escalate to an infection which is much more serious. I'm telling you, the fun just never ends! Does anyone think maybe I've been over-doing it? Not to worry, I'm taking care to deal with the issue before it gets out of control.

Sunday, November 29, 2009

Losing hair

I am far less fatigued today! I even woke up hungry this morning. The digestive problems have been few and far between so far but when they do decide to hit, its imperative that I am near a bathroom! They warn that when your hair begins falling out, it will fall out in clumps and it really does! I can't describe what it's like to see all that hair in the shower-it's unreal. I found this quote on-line, “There are studies that show that for many women, losing their hair is worse than losing a breast. That's because you can conceal the loss of a breast, but hair loss is so obvious and apparent. ” I think its right on the money! I'm still pretty freaked out about losing my hair so I've ordered some scarves and hats. Maybe I should just shave it off now and be done with it!
I am receiving carboplatin and docetaxel as well as herceptin. All cause hair loss (including head, underarm, pubic, eyebrow and eyelash hair). Hair loss may begin after the first few chemo treatments. The extent and location of the hair loss varies from person to person. Currently, there is no known prevention for hair loss due to chemotherapy. Through the years, attempts have been made to reduce hair loss by using tight bands or ice caps. These techniques were thought to reduce the blood flow to the hair follicles, thus limiting the chemotherapy exposure. Unfortunately, these techniques did little more than cause headaches and have been abandoned in most settings. It may take from three to six months after therapy is completed or it may start growing back while receiving chemotherapy. The "new" hair may have a slightly different color, texture, or curl. I'd be happy to lose all my leg hair but that ain't happening! Hair generally grows back after treatment. But what if it doesn't? There are no guarantees!

Saturday, November 28, 2009

Fatigued!

I can't believe how fatigued I feel! I did so much better with the first round of chemo. Cancer-related fatigue (CRF - sometimes simply called "cancer fatigue") is one of the most common side effects of cancer and its treatments. It is often described as "paralyzing." Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep. It may not end - even when treatment is complete. Fatigue can be confused with tiredness. Everyone gets tired. In fact, it is an expected feeling after certain activities or at the end of the day. Usually, we know why we're tired and a good night's sleep will solve the problem. Fatigue is less precise, less cause-and-effect. Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or longer). Fatigue can have a profound negative impact on a person's ability to function and quality of life. Boy, they're not kidding!
Well, I did manage to get about 4 hours of work in today. I have a grant that has to be Fed Ex'd out on Monday afternoon. It is very close to being finished. Maybe I can finish it up tomorrow and have it out first thing Monday. Luckily, I had most of it already finished and now it's just adding the project specs, putting the attachments together and editing! Shouldn't take too much longer (I hope). Now, I just want to go to bed!

Friday, November 27, 2009

All I want to do is sleep

Today all I want to do is sleep! I was doing good yesterday and even worked the midnight shift at AWP, completing 7 hours of data entry! Now I just want to take a nice long nap. The digestive symptoms have been easier this time as I've hit them head on with Gatorade and Ensure. I have had a slight headache off and on but it's probably the Herceptin. Maybe that's why the fatigue seems to have hit me faster and harder this time. They note that if you are receiving Herceptin every 3 weeks, you may have stronger side effects. Or maybe it's the cumulative effect of the chemo? I don't know as I'm too tired to think! But sleep is fleeting. I feel lucky to grab a few hours at a time but how I'd love to a decent night's sleep.
A study in the Sept. 1 issue of the journal Sleep shows that the sleep-wake activity rhythms of breast cancer patients are impaired during the administration of chemotherapy. Results indicate that the first cycle of chemotherapy is associated with a temporary disruption of these rhythms, while repeated administration of chemotherapy results in progressively worse and more enduring impairments. Disruptions are most pronounced in patients who were poor sleepers before starting chemotherapy. I think I'm royally screwed here!




Thursday, November 26, 2009

A day of thanks

A quiet day as I gear up to do the midnight shift at AWP. It was a scaled down version of Thanksgiving Day-turkey & gravy, stuffing, sweet potatoes, rolls and pumpkin pie only. Not our usual fare but nice enough. I prepared the turkey and stuck him in the oven right before noon then promptly fell asleep on the couch! Guess I needed the nap. My hair is really starting to fall out now. Especially around the temples. Think I'll call Sam to have her buzz it down even shorter. I think if I hadn't been so tired this morning I might have cried when I saw the hair coming out so furiously. Or maybe I've just accepted it as inevitable.
We had the hair discussion at chemo yesterday and someone said it best when he said, "I'd rather be hairless and alive than hairy and dead". I guess that says it all. Makes me think about what I'm thankful for. I'm thankful for my family (well most of them anyway), my friends & co-workers who have come through for me in such a big way and the support from all the folks I work with in C-U and Springfield. That's really what keeps me going these days. I'm also thankful to have discovered the cancer early enough to kick its ass! I'm thankful for my medical team who are helping me win this fight. I'm thankful to have a fighting spirit and will continue to chase the devil called cancer because I am on the offensive. He'd better watch out!

Wednesday, November 25, 2009

Long, long chemo day

Today was a marathon chemo day. It wasn't as busy today as it was the last time. I arrived at 8:30 am for my labs, saw the doctor at 9:30 am and started chemo at 10 am. I finally finished at 5:00 pm. I managed to watch 2 movies on my laptop, watched a little tv, had a few small conversations and listened to music as well as made 800 trips to the bathroom as I must have drank 6 bottles of water! I hope they don't charge me rent! They did start the Herceptin, which was a slow drip that took 90 minutes. They run it slowly to monitor you for any adverse reaction. They also give you a bell to ring in case you start feeling one of the adverse effects. Herceptin causes flu-like symptoms in about 40% of the people who take it.

These symptoms may include:
  • fever
  • chills
  • muscle aches
  • nausea
Side effects generally become less severe after the first treatment. Your
treatment team will monitor you during your infusions, especially your first
dose, and can adjust the infusion if you are very uncomfortable. If you are receiving
Herceptin every 3 weeks,you may have stronger side effects. If you are receiving
Herceptin with chemotherapy, you may also experience chemotherapy side effects.
Lucky me! A great big thank you to Tara, who met with me in the Oncology Waiting Room to discuss finances and also brought me chapstick that I desperately needed! She's a lifesaver. Also, a big shout out to my friends Jacque for the baked mostaccioli & garlic bread (it was delicious) and Vic for the Peppermint Tea! Thanks to both of you.

Tuesday, November 24, 2009

Round #2 tomorrow

Tomorrow is Round #2 of chemo. They are adding the Herceptin, which will prolong chemo by probably an hour or so as it has to be a slow drip so they can monitor any potential reactions to it. Cancer cells grow in an uncontrolled fashion. Herceptin works on the surface of the cancer cell by blocking the chemical signals that can stimulate this uncontrolled growth. Genes are like instruction manuals that tell each cell of our body how to grow, what kind of cell to become, and how to behave. Genes do this by ordering the cell to make special proteins that cause a certain activity -- like cell growth, rest, or repair.
Some cancer cells have abnormalities in genes that tell the cell how much and how fast to grow. Sometimes the cancer cells have too many copies of these genes with abnormalities. When there are too many copies of these genes, doctors refer to it as "overexpression." With some forms of gene overexpression, cancer cells will make too many of the proteins that control cell growth and division, causing the cancer to grow and spread. By blocking the signals, Herceptin can slow or stop the growth of the breast cancer. Herceptin is an example of an immune targeted therapy. In addition to blocking HER2 receptors, Herceptin can also help fight breast cancer by alerting the immune system to destroy cancer cells onto which it is attached.
While I am not looking forward to tomorrow, today was a really good day at work-busy but extremely productive. Getting people housed with our rapid re-housing dollars is so satisfying. I love it when a plan comes together! When I finally got home tonight, I had a big, ole piece of pumpkin pie. A big shout out to my soul sister, Deb, for sending the pie home with Hannah. It is delish!

Monday, November 23, 2009

Pumpkin cravings

I've been hearing about people craving burgers while on chemotherapy. According to the discussion boards it's a very real phenomenon. Actually everyone is different and may crave just about anything. Most of the time I don't want anything but when I do feel like eating I usually want something with pumpkin. This is especially strange as all my life I have hated pumpkin. Pumpkin anything turned my stomach. Now, my taste buds recognize it as a new & different sensation and can't get enough! They did say that if you eat foods you love it could trigger "food aversion" and eating foods that are foreign to you could become all that you want to eat. If you would have told me that I fall in love with pumpkin, I'd have told you that you were delusional. But now I want pumpkin spice cappuccino, pumpkin muffins, pumpkin cookies, pumpkin roll, pumpkin cheesecake, pumpkin pie, pumpkin pie blizzard, pumpkin soup (yes, I said pumpkin soup) etc... I absolutely can not get enough pumpkin! I think I'll start off my Thanksgiving feast with dessert--pumpkin pie (bet you knew that was coming, huh?) So, if anyone has any good pumpkin recipes please feel free to share them with me!

Sunday, November 22, 2009

Pleasant Weekend in Cancerville

All in all it was a good weekend. Yesterday we went shopping in downtown Champaign and got our H1N1 vaccinations. Then we all got our hair done and had a nice buffet meal right here at home. We treated ourselves to cupcakes from Cakes on Walnut and frozen custard from Jarling's Custard Cup! Today, we took the dogs (Harley & Rudy) out to the Dog Park to romp with the other dogs for a couple of hours. Then, I went to lunch with my friend, Jacque. After lunch, we went shopping. It was an enjoyable few hours. It was nice to feel normal and enjoy good food and time with good friends. My focus was truly on me this weekend.
You see, rarely can I ever devote 100% of my attention to anything. If I'm at work, the cancer is on my mind. If I'm dealing with the cancer, work is on my mind. If I'm trying to get something done at home, I have Mike to deal with and cancer is on my mind. It's inescapable! Someone recently told me that perhaps it is good to have all your crises at the same time so you get them over with. If I could get some reassurance that I've had more than my share of crises and now I'm done, I'd be inclined to agree. So, I'm gearing up for Round 2 of chemo (scheduled for Wednesday, November 25). I know you are all jealous of the fun Thanksgiving holiday I'll be having. But I fear that after this second round, my hair will be only a distant memory. For now, I still have my hair and plan to stay in denial about losing it!