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.
Monday, November 30, 2009
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".
Sunday, November 29, 2009
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
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
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 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
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:
- muscle aches
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
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
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
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!
Saturday, November 21, 2009
This is me modeling the wig I got from the American Cancer Society. While my hair hasn't started falling out yet, my hairstylist, Sam, pointed out that I am "shedding" hair when she came to give me a trim today. Now we all lose some hairs naturally each day, when we brush, comb, or shampoo. Around 50 to 150 hairs are shed each day but this may mean the hair loss is beginning. But chemotherapy and radiation treatment will cause hair loss because it stops hair cells from dividing. Hairs become thin and break off as they exit the scalp. This occurs one to three weeks after the treatment. Patients can lose up to 90 percent of their scalp hair. The hair will regrow after treatment ends and patients may want to get wigs before treatment. There are some drugs in development to help prevent this hair loss from occurring (well hurry it the hell up already!)
So we got out the wig and styled it. Ok everybody, what's the verdict? I'm not sure I'll wear it as I also ordered a scarf yesterday just to be prepared. I'm sure I still won't really be prepared but I can certainly fake it! Actually practically everyone in the house has been trying the wig on. Hannah liked it so much she decided to color her hair a similar color. Even Sam's daughter Samara had to try it on. I have a picture of her modeling the wig but it will only post sideways. I tried to rotate it and save it but it only saved sideways so I didn't post it here. It's too bad as it's a really cute picture.
Friday, November 20, 2009
I saw the oncologist today for a check-up. My blood work was all normal so I'm good to go for chemo next week (lucky me). They will now add Herceptin to my protocol. Herceptin cannot be taken orally as it would be destroyed by the stomach. It is, therefore, given as a drip into a vein usually over 90 minutes followed by a period of observation. Herceptin can be given in conjunction with chemotherapy. Herceptin (trastuzumab) is a treatment for women with breast cancer whose tumors have too much HER2 protein. This type of cancer is known as "HER2-positive", "HER2+", or "HER2 overexpressing". HER2+ tumors tend to grow and spread more quickly than tumors that are not HER2+. HER2 stands for Human Epidermal growth factor Receptor 2.In HER2+ breast cancer, the cancer cells have an abnormally high number of HER2 genes per cell. When this happens, too much HER2 protein appears on the surface of these cancer cells. This is called HER2 protein overexpression. Too much HER2 protein is thought to cause cancer cells to grow and divide more quickly, which is why HER2+ breast cancer is considered aggressive. Studies show that approximately 25% of breast cancer patients have tumors that are HER2+. HER2+ tumors tend to grow and spread more quickly than tumors that are not HER2+.
We spent the evening playing this board game Hannah bought called Apples to Apples which consists only of two decks of cards: Things and Descriptions. Each turn, the current referee selects a Description and players try to pick, from the cards in their hands, the Things that best match that Description. The referee then chooses the Thing that appeals most and awards the card to the player who played it. Once a player has won a pre-determined number of cards, that player wins. The unusual combinations of Things and Descriptions are humorous to the extreme, and had us in an uproar. We laughed and laughed. I almost peed my pants once or twice.
Thursday, November 19, 2009
Ok, my friends and family have assured me that I don't smell. They have also assured me that if I ever do, they will definitely tell me. Hopefully, they will be kind when they do. I made Hannah "smell" me earlier and she commented that I smelled like sugar cookies. So, a shout out to Danyale for her gift of Vanilla Sugar Cookie shower gel and body spray--nice choice! It's keeping me smelling good!
It's been three long, busy days and I again found myself with no appetite today. We decided to have Chinese take out for supper and I got Shrimp w/ Snow Peas. I liked the crunch of the vegetables but it had no taste! Most chemotherapy medicines cause some degree of anorexia, a decrease in or complete loss of appetite. Loss of appetite, as well as weight loss, may also result directly from effects of the cancer on the body's metabolism. That's an interesting piece of news! Cancer treatments and the cancer itself can change the way some food tastes. Taste changes can contribute to anorexia, poor nutrition, and weight changes. With taste changes caused by chemotherapy, you may notice:
*either a dislike for or an increased desire for sweet foods
*dislike of foods with bitter tastes
*dislike for tomatoes and tomato products
*dislike for beef or pork
*constant metallic or medicinal taste in your mouth
I have that constant metallic taste in my mouth. It's yucky! These changes occur because chemotherapy drugs can change the taste receptor cells in your mouth that tell you what flavor you are tasting. Changes in taste and smell may continue as long as chemotherapy is being given, or even longer. Several weeks after chemotherapy has ended, taste and smell sensations usually (but not always) return to normal. Oh my god, what if my taste buds are permanently screwed up? I like to eat too much!!!
Wednesday, November 18, 2009
I swear I smell! And from what I can tell from the discussion boards, others having chemo are having similar experiences. So my first thought: "Peachy! Not only do I sometimes feel like crap, I kinda smell like it too!" (Doesn't do much for ones' self-esteem!) Now no one else seems to notice it. I can't figure out if it's my "imagination" or people are just too nice to mention it! Bruce A. Feinberg, MD, chief of the Georgia Cancer Specialists, is an oncologist and the author of Breast Cancer Answers states that when cancer patients complain that their skin has an odor, the first thing the doctor has to sort out is whether there is an odor present that is perceptive to others, or whether it's just the perception of the patient. The reason for this is that many chemotherapy drugs intensify or change the patient's sense of smell, so the patient notices odors that were not detectable before, or odors that were not noxious before become unpleasant.
So the first thing to do is ask my friends and family to tell me if they notice an unpleasant smell. So please tell me if I smell! If they don't smell an odor, the problem is likely to be with my sense of smell. If they do, I'll have go into hiding! It is reported that some chemo agents do affect the endocrine glands so that they emit a chemical smell. The only solution appears to be masking the odor with soaps and lotions that smell good. The problem will pass when chemotherapy is finished. One thing that makes me feel better is the Vanilla Sugar Cookie Shower Gel and Body Spray that my co-worker Danyale gave me last year for Christmas. I use it every day and hope it masks the smell.
Tuesday, November 17, 2009
Today was a long, busy day at work and no one felt like cooking, so we decided on KFC for supper. We ordered a bucket of chicken (extra crispy of course) and it contained 2 very large breasts. Hannah jokingly told me that the guy who waited on us was "flirting" with me which is why we got the 2 really big breasts. Bert exclaimed that he must be a "breast man" and I said, "Yeah, too bad I only have one!" Then we dissolved into fits of laughter!
I was supposed to see the oncologist tomorrow for a "check up" since it will be 2 weeks since the first round of chemo. But since I need to be in Springfield, and I'm feeling fine, I talked him into seeing me on Friday instead. Regular check-ins with the oncologist are important due to the type of chemo I'm having, which is called adjuvant chemotherapy. Adjuvant chemotherapy is the systemic therapy given to patients with no evidence of cancer after surgery. While surgery is used to remove all of the cancer that can be seen, adjuvant therapy is used to kill any cancer cells that may have been left behind that can't be seen. Adjuvant therapy after mastectomy reduces the risk of breast cancer coming back.
Even in the early stages of the disease, cancer cells may break away from the primary breast tumor and spread through the bloodstream. These cells don't cause symptoms, they don't show up on imaging tests, and they can't be felt during a physical exam. But if they are allowed to grow, they can establish new tumors in other places in the body. The goal of adjuvant chemotherapy is to kill undetected cells that have traveled from the breast. It is a difficult treatment to understand. As one patient said: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished". That is what adjuvant treatment is about. It is similar to life insurance. When you pay your premiums to the insurance company, you are recognizing a potential risk to your life that may or may not happen (car crash, sickness, earthquake, hurricane, etc.).
Monday, November 16, 2009
For those of you who know my sister and her sense of humor, you will understand the picture. This is the "new" bra she designed for me! Unfortunately, this prototype still needs a little work. There's no way to fasten it unless I use duct tape! Maybe that can be our new business venture--underwear for one-boobed women everywhere! I was looking at information on breast protheses on line and found this which made me laugh on About.com:
After breast cancer surgery, you can take control of your appearance and boost your self-esteem. With the proper fit, nobody will know you're wearing a substitute bosom ( LOL sounds like something my grandmother would say). Too funny!
I did go out to the American Cancer Society and get a wig. It is one made from human hair. It's darker than what I normally wear my hair color but I thought I'd get one just in case. I haven't yet made up my mind if I will wear it but I know that as soon as I start losing my hair, I'm going to freak out! I just want to be prepared. It does need to be cut and styled to be more in line with how I wear my hair. I'll probably get some scarves too. I have no idea what I'll wear when the hair loss starts. I'm definitely not looking forward to it!
Sunday, November 15, 2009
"Human beings, by changing the inner attitude of mind can change the outer aspects of their lives." - William James
Doctors can't prescribe a dose of "positive" attitude but they say that patients who "look on the bright side" tend to handle medical problems better than others. They seem quicker to seek help when they need it and more motivated to follow doctors' orders. Even more important, they appear to believe they're going to get healthier. Being an optimist also has been associated with a healthier immune system and an ability to better cope with physical pain. Still other studies have connected a positive attitude to a quicker recovery from heart surgery and a reduced likelihood of re-hospitalization, as well as to a superior ability to handle the emotional upheaval of life-threatening illnesses like cancer.
I still can't help but wonder if my breast cancer is a consequence of the negative attitude that I have been harboring for the past four years (maybe longer). Do not underestimate the fact that your attitude is the key to success in your life. Do not underestimate that you hold all the power and the keys to your own future. The longer I live, the more I realize the impact of attitude in my life. Attitude to me is more important than facts. It is more important than the past. It is more important than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, or skill. The thing is that we have the choice every day about the attitude we will include for the day, have for this event, for every moment in our lives. We can change our attitude, which will ultimately affect our lives. So I decided not to question or complain about my breast cancer, but to accept and embrace it as a part of me.
Saturday, November 14, 2009
Today I'm feeling better! The bone pain is dissipating although I still feel a little weak. I found a new website called chemotherapy.com that has some good information. I discovered that more than 50% of febrile neutropenic events occur in the first cycle of chemotherapy. Yikes! So preventing infection is of the utmost importance!
Simple but effective steps to help protect against infection triggered by low number of white blood cells:
- Always wash your hands with soap and plenty of water. Many infections are transmitted through hands and things that you touch, such as doorknobs. Washing your hands thoroughly is the most important thing you can do to prevent infection.
- Avoid people with colds or the flu.
- Avoid large crowds to reduce the likelihood of coming into contact with sick people.
- Bathe daily and carefully dry your skin.
- Take steps to prevent cuts or scrapes, as these provide entry points for infection:
- Use an electric razor instead of a blade to avoid cuts.
- Use caution with sharp objects.
- Wear gloves when possible.
- If you have a cut or scrape, keep it covered with a clean bandage until it heals.
- Prevent cracks in your skin by using lotion.
- Cook your food thoroughly to kill any potential microorganisms that may be on raw food.
So, I'll be following the above precautions as I move through this process. All of you should also feel free to take the above precautions (especially if you will be around me!)
Friday, November 13, 2009
Today, the bone pain was worse. I am having a hard time being comfortable sitting, standing or laying down. Yesterday it was my hips and back but today I swear it was in every bone of my body! The nurse described it as feeling as if a mule kicked you. Yeah, more like being trampled by the entire herd at the Running of the Bulls! I have to keep reminding myself that the pain means the shots are working. The reason why there is so much bone pain is that the cells are being produced in high numbers in the bone marrow, but can't all get out fast enough and are pushing on the bone - it's as if there is a mad rush to get out into the blood. The statistics show that 24% of people getting Neupogen injections experience bone pain. Yet again, I have to be in the "special" category! What is that about?
See chemotherapy treatment 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. Neutropenia is a condition of the blood, in which your white blood cells have a low count of neutrophils. Neutrophils, a type of white blood cell, is part of your body’s immune system, and it helps fight off bacterial infections. When you have neutropenia, you are at greater risk of infections, and your body is not well-equipped to fight back. Injections of Neupogen can boost production of your neutrophils. Neupogen (filgrastim) is a drug given to patients who have neutropenia (low neutrophil count). An injection of Neupogen stimulates white blood cell production. It is a clear liquid that is usually given as a shot (injection). 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. Cancer sucks!
Thursday, November 12, 2009
Today I woke up feeling pretty good but by mid-morning I had extreme pain in the hips and back. My first thought was "Great, now I have bone cancer!" as every ache and pain is now associated with cancer. I discovered that the bone pain is due to the shots I am receiving to elevate my white blood cells. To keep the white blood cell level elevated, injections of blood cell growth factors are given. These growth factors boost the number of white blood cells your body makes. The growth factor used in cancer treatment to boost white blood cells is Granulocyte Colony Stimulating Factor (G-CSF). The treatment usually starts a few days after chemo. The G-CSF is injected into the fatty tissue of the stomach, arm or leg.
Now, I am quite aware of the bone pain associated with these injections but I've learned there are other side effects as well but they claim that the side effects of G-CSF are usually quite mild (Like hell-the bone pain is excruciating!). They say to relieve the pain with Tylenol. I tried it, it didn't work. When I settled in for the night, I finally broke down and went for the Vicodin!
And there are additional side effects to look forward to that include:
- a skin rash and reddening around the injection site
- Feeling sick
- A high temperature (fever) and chills
Geez, will the fun never cease?
Wednesday, November 11, 2009
During chemo they warn of nausea and/or taste changes and that some foods may be particularly aversive. That I expected but I never thought that I'd be turned off to all food! They say this is not unusual because of the unpleasant experience of chemo. One way to avoid food aversion is to prevent the nausea from developing or relieve it as soon as possible. Yeah, that didn't work. Another way is to eat a variety of different foods and flavors, especially when feeling nauseated. Say what? That makes no sense to me at all. Apparently the foods should be bland, easily digested and leave no lingering taste or smell.
Now I am officially anorexic! What a hoot! Whoever would have thought that I of all people wouldn't want to eat? Anorexia is a problem for many people who are getting cancer treatment. It's hard to have an appetite when experiencing nausea, taste changes, constipation and fatigue. My problem is that food has become tasteless. I've been trying to "spice" it up whenever possible but that just adds to the constant heartburn I seem to have. They say to try stronger flavors like spicy, sweet or sour but all contribute to the heartburn. At least I am now approaching my "ideal" body weight although the doctor would prefer I not drop any lower than that. But this morning I woke up and I was actually hungry! I guess that's a good sign although I'm not complaining about reaching my ideal weight!
Although I felt a little drained today, I felt pretty good overall. I'm hoping to have turned the corner until the next round. My friend Kristen made me some delicious soup. I'm happy to report that I was actually able to taste the broccoli and celery in the soup. If you only knew how excited that made me. Hopefully that means my taste buds are coming back on line! Thanks so much, Kristen! Also, several people have suggested I add Ensure to my diet to stay nourished. Thanks to all for the suggestion. I'll pick some up to have on hand when I lay in my stock of Gatorade!
Tuesday, November 10, 2009
They say to eat light, consume high-fiber and stay well-hydrated for chemo. Two to three hours before an infusion, I should eat lightly and make high-fiber choices. That means I have to be up early! I hate early! Chemo drugs tend to slow peristalsis (digestion and bowel processes), so whatever I eat may remain in my digestive system longer than usual, and will dry out. Eating a high-fiber snack helps, since fiber helps retain moisture in the bowels. I need to drink lots of water or sports drinks, (and avoid caffiene) to boost my electrolytes. Staying hydrated helps the cells process the chemo drugs through my system faster. The faster the better if you ask me!
I must say that I believe that Gatorade is a miracle drug! It has been about the only thing that makes me feel human and helps me function. The use of Gatorade in medical conditions associated with extreme dehydration, such as diarrheal diseases and other causes of volume depletion, offers the medical community a relatively simple and inexpensive way to manage conditions that are often life-threatening.
Gatorade actually got its start on a spring day in 1965 when then-assistant Gator football coach Dwayne Douglas questioned University of Florida kidney disease specialist Robert Cade about why players lost so much weight during practices and games but urinated so little. In early September 1965 Cade and his colleagues began collecting all manner of samples from 10 UF freshmen football players. The results were eye-opening. The players’ electrolytes were completely out of balance, their blood sugar was low and their total blood volume was low. The impact on the body of this upheaval in chemistry was profound. “The solution,” Cade says, “was to give them water, but with salt in it to replace the salt they were losing in sweat. Also, give them sugar to keep their blood sugar up, but not so much sugar that it would upset their stomachs.”
Monday, November 9, 2009
I was napping earlier because I take over the AWP Hotline for the overnight hours. You'd think it would be hard to sleep at a time you are normally up but it was quite easy to "nap". I'm still amazed at how out of whack my system is. I guess toxic drugs can wreak all sorts of havoc. I am surprised by the strange noises that seem to emanate from my body all of a sudden! I'm not talking about passing gas, either. I mean "noises". It has been so weird that at work we now refer to it as "my alien baby". It growls and makes these weird sounds (almost like it's own language). Earlier today, it scared the dog! Harley was laying with his head on my stomach when all of a sudden "alien baby" let loose. Harley actually yelped, jumped up and ran off! I foresee some embarrassing times ahead.
Today I had my first injection to keep my white blood cell count elevated. I have to return to the clinic tomorrow, Wednesday and Thursday for more shots. They explained that white blood cells are the body's best defensive weapons in the fight against germs and disease, so when white blood cell counts drop as a result of breast cancer treatments such as chemotherapy, it puts the patient in a vulnerable position. Without adequate protection from these disease-fighting cells, viruses and bacteria suddenly become much more serious threats. There is so much sickness going around that I need to be extremely careful. White blood cells, or leukocytes, help fight bacteria and viruses. They're like the armed guards at the gates of the body, driving back the invaders. When there are too few white blood cells, a patient's immune system is compromised, putting her at increased risk of all types of infection: bacterial, viral, and fungal.
They say to think of chemotherapy as a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets tumor cells, but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor may refer to a low white blood cell count as neutropenia, since a shortage of neutrophils is often what the doctor is most concerned about. Sometimes I get tired just thinking about it!
Sunday, November 8, 2009
Yep, I crashed and burned. I did manage to get a little more sleep last night and took a much-needed nap this afternoon. My strength tends to ebb and flow so you never know what you'll get when. Actually, afternoons seem to be better than mornings. What they don't tell you is that it's not the cancer that'll kill you, rather it's the malnutrition and dehydration that'll do you in! They weren't kidding when they said you can't "power" through this, although I was positive I could. I do, after all, have superpowers. Unfortunately, my powers seem to be failing me! I've been downing the Gatorade to keep dehydration at bay. Next week's schedule has built-in rest breaks so we'll see how it goes.
I'm trying to figure out when I became a "cancer patient". I've been trying so hard just to be someone with cancer but now I actually feel like a cancer patient. Not that anyone has been treating me that way, because I wouldn't allow it. It's just how I now feel. It's a terrible, helpless feeling knowing that toxic drugs are coursing through your body attacking everything in sight! At chemo last week, I met people who are either in their second chemo protocol because they needed more or beat one type of cancer and now have another. Heaven help me I do not want to do this again (and I still have 5 more rounds in this protocol)! It was hell staring that in the face last week. They say talking about it helps but until you can describe it, you can't really talk about it. I have decided that if something sounds good, I'll go ahead and eat it even if it isn't on my new diet plan as now is not the time to deprive myself. Besides, I don't feel like eating most of the time anyway.
Saturday, November 7, 2009
A very, very quiet day. I did finally manage to get some sleep last night! Lately, it's been more like "resting my eyes" vs. sleeping. And I almost had an appetite, today! They warn you about the "big" side effects like nausea and hair loss but barely mention the others, like digestive issues (i.e. constipation, diarrhea, heartburn, etc). It's so annoying! I'm feeling very drained and a little "achy". The achiness is often described as similar to fybromaialgia pain but I have no sense of comparison. I just know that I don't like it! If this is what fybromaialgia feels like then I feel bad for all of you out there that may be suffering from it. It's hard to describe what it feels like. I did get out a bit today with my chauffeur, Hannah, and the fresh air was nice. But mostly, I just wanted to "veg out".
I was told that more monetary donations and other items rolled in today at work, which is absolutely fabulous. I've always said that Champaign-Urbana is a great community-they just keep proving it. I still don't know how to thank my co-workers for keeping the shelter running while I battle this cancer. As you can see, my timing remains impeccable! Get cancer and have a financial crisis at work at the same time. Make than an aggressive cancer that requires aggressive treatment! I never could be accused of taking the easy way out.
Friday, November 6, 2009
Today was an ok day because I only had a little nausea this morning and the heartburn is subsiding. But still not much of an appetite. They warn of food aversions but aversion to all food? Whoever would have thunk it? I managed to get a full day's work in but it was exhausting. The news media continued to follow-up, which was great but then there was paperwork that was needed immediately, calls from Springfield to take, discussion with the Board President and donations which took up a lot of time, keeping me there until after 6pm. But, it needed to be done and that's my responsibility. I did get "chastised" several times by others for not taking care of myself but I had to do what needed to be done. But I do appreciate the concern and promise to take it easy over the weekend!
We are still chasing the government dollars but the community is stepping forward to help. Carle Foundation Hospital donated $10,000 today and another $8,800 came in from personal donations. The United Methodist Church of Urbana donated $2,000 and offered the use of their food pantry. The groundswell of support is a big boost to the morale of the staff. We're still rattling the bushes looking for the volunteers we know are out there. The staff remaining at AWF are feeling positive and everyone is pitching in to make it work. There will never be any way that I can convey my appreciation to them. Even though the crisis is not yet over, I feel like the tide is turning. I will do everything within my power to keep the doors open and the program operational. This crisis will become an opportunity for an even better organization.
Unfortunately, while I feel that today was rather productive, and I felt pretty ok, I can feel the big crash approaching. I've been pushing the fluids as instructed to work the toxins out of the body and that takes more energy than you could ever possibly imagine. I fear what tomorrow will bring. Good thing it's the weekend!
Thursday, November 5, 2009
I did manage to get that awful taste out of my mouth and only felt a little nauseous today. But my digestive system is out of whack! I suffered terrible heartburn all night and was up & down eating Tums all night. Then this morning my stomach was a rumbling and I thought I might have to put on a pair of disposable underwear just to be safe. By this afternoon, I was afraid I wouldn't be able to go at all. It's amazing how quickly that can change. I don't have much of an appetite, either. I did manage to get in almost a full day's work today but with rest periods in between. I fear the crash that's probably coming after I am off the steroids. I'm hoping to get through tomorrow (Friday) before it happens. And I am definitely suffering from chemo brain! I'm trying to write everything down because I'm getting forgetful.
The best news is that United Way is depositing money into our bank account so we can make a payroll. So, at the very least, I feel that the work I have managed to do has been paying off. United Way has truly been our champion through this and I'm sure that there would've been no way I could've done this on my own at this point in my battle. I can never thank them enough! So be sure to generously support the Champaign County United Way. We are also hoping the State will be sending money soon and that the VOCA dollars will be released as we have legislators working on the issue. So keep your fingers crossed! I'm cutting this a bit short because I'm feeling tired and foggy (chemo brain) at this point. Yes, chemo brain really does exist-I'm living proof!
Wednesday, November 4, 2009
Today was my first round of chemotherapy. I am receiving the drugs carboplatin and docetaxel as well as anti-nausea meds. Actually a whole boatload of ant-nausea drugs! You'd think I wouldn't need anymore after what they infused me with but they sent me home with 3 prescriptions for anti-nausea! It wasn't bad other than a little nausea and this terrible taste it leaves in your mouth! They tell me to expect fatigue to hit within the next couple of days (probably Friday). I first had to have lab work done and then see the doctor before I could start the chemo protocol. Of course they had to have a machine malfunction in the lab that delayed all of us so I'm told them that's what happens when you let the new kid in. I seem to have electro-magnetic tendencies because I can walk into a room and crash computers! I once shut down the entire Motor Vehicle Department (yes in all 102 counties) for 30 minutes. It was my paperwork in the computer that caused the malfunction! I am now barred from that particular facility (just kidding). Then the doctor had been called over to the hospital for an emergency so that delayed seeing him and getting the ok for chemo. He was quite apologetic so I assured him I had cleared my calendar for the day and was not complaining because they had gone out of their way to accommodate me when I was first diagnosed.
They then started me off with a fluid flush, then anti-nausea meds, then the chemo drugs. I was told to expect to be cold but I never was. They keep dum-dum suckers on hand to help with the bad taste in your mouth but I had some tic-tacs in my purse so I didn't eat any candy (kudos to me). They also have snacks like fruit, crackers and drinks. Bert came with me so she ran out to pick up a healthier lunch since we were running 2 hours behind. I had turkey on 9 grain bread with a little cheese, mustard, lettuce & tomato. I only managed to eat 1/2 of it. I have felt a little queasy off and on tonight so I broke down and took some anti-nausea meds. Unfortunately they can suppress your immune system, make you dizzy and cause headaches. Geez! So much to look forward to!
So chemo wasn't so bad after all. I was surveying everyone about how chemo affected them and everyone was very forthcoming which helped me be more prepared, although I realize we are all different. But I did freak out as one lady came in and sat next to me who looked really, really sick. She has breast cancer, has lost her hair and currently resides in a nursing home. She told me that she has Stage 2 breast cancer (as I do). I can only think that hers has spread to other areas because she seems and looks so ill. She was very nice and I tried to converse with her but weird thoughts kept going through my head. I was thinking "I don't want to look like that" and "Oh my god, my family's going to put me in a nursing home!" I was freaked out enough to start texting people about how freaked out I was because I sure couldn't say it out loud! I was done at about 2:30 pm (started out at 8:45 am). I do have to return to the clinic next week (Mon - Thurs) for shots to keep my white blood cell count up. So much fun to be had!
I do want to say thanks to all the folks out there that checked in with me today either by phone, email or Facebook. I appreciate that I was on your minds and you were sending me positive thoughts and prayers. I know that's what got me through today. Also, I would be remiss if I didn't thank my family and my co-workers who are holding down the fort for me. But, because I felt ok, I did go do a live interview tonight on WCFN, Channel 49 discussing our financial situation. I must have had chemo brain already as I gave the wrong toll-free hotline number - I said 866 instead of 877 but corrected my mistake and their website will show the correct number. Maybe you shouldn't let me out and about?!
Tuesday, November 3, 2009
Tonight I had that "Oh My God" moment! I don't know if it was because it was such a heart-wrenching day at work since 9 people were laid off or because I start chemotherapy tomorrow. I was sitting at the 3 way-stop sign by Crystal Lake Park (north of Carle) looking through the open space between Carle Hospital and their North Parking Garage and saw the Mills Breast Cancer Institute. That's when it hit me-I have breast cancer! Now it's not like I didn't already know that but the realization slapped me upside the head and the tears started flowing. I wasn't able to leave that spot-I must have sat there for at least 5 minutes. Good thing there was no one behind me! I'm not sure what about that sign triggered me. It made me feel so insignificant and vulnerable.
I worry about the chemo drugs they will be infusing into me. I worry about losing my hair. I worry about nausea and losing my appetite. I worry about food tasting different. I worry about AWF/AWP and those few I'm leaving there to take up my slack. I don't for a minute think they can't do it but I worry about burnout. I worry most about fatigue (which could affect how much I'm able to work) because it is the most common complaint associated with cancer treatment. Fatigue is described as pain that is invisible. It cannot be measured and you can't push past it. All those years ago when I had meningitis I suffered from fatigue and lethargy. It was a horrible, helpless feeling because I really couldn't get out of bed. Some days I slept for 20 out of 24 hours. I fear feeling like that again. They warn that cancer itself causes fatigue as cancer cells develop so rapidly that they use a lot of energy. Also, as cancer cells die, they create waste products causing the kidneys and liver to work harder to eliminate the toxins, which can sap your energy. I haven't really felt sick but tonight I'm feeling drained and overwhelmed.
This once fearless woman now feels scared a lot of the time. I'm scared for my family. I'm scared about the financial repercussions of cancer as well as the work repercussions. What if I can't work full-time? What if I'm not up for the challenge of running AWF? Not knowing what my future holds is the worst!
Monday, November 2, 2009
A daily tarot card gets sent to my email every day. Today's is the Fool. The Fool card affirms that my alter ego today is a Quantam Leaper with a hero's heart. My superpower is liberated by free will and trust, which lead me to explore simple speculations for their own sake. I can move beyond the fear factor. I don't know where I'm going, and I don't care where I've been. I only know that, as the hero of my own story, its for me to find out. For like Alice, I'm on the verge of stepping into a rabbit hole; unless I stop short and play it safe, I'll know soon enough where following my own feet has landed me on this curious venture. The blissful frailty of unwritten conclusions and unguarded access sweetens the desire. So despite familiar warnings, irresistible promise draws my eyes wide open and away from domestic comfort zones, with only certain inquiry, hope and faith to recommend my course. I'll never know until I try. But, am I willing to risk it? Can I give up what's safe and comfortable and make the leap? It seems that the choice could soon be made for me.
It was a crazy day at work as there is still no money. We can't keep asking people to work without knowing if they'll get paid. I fear a massive lay-off is imminent. My only hope is that we can maintain a skeleton crew to at least keep the doors open. I definitely feel the strain and hate going into chemotherapy with this hanging over my head. I really don't want to be the Executive Director that shuts the doors of the shelter. I hope we can ride this out but I'm beginning to wonder. This "job" is certainly not fun anymore. Maybe it's time to take my toys and go home? God give me strength to persevere!
Sunday, November 1, 2009
What do I want? While a powerful and liberating question, it is also scary. While we don't have to act on what we want and wanting doesn't equal getting, the ultimate creativity is being in touch with your undiluted desires. Do we really believe that to be successful we must do more and do it faster? I realized that all the rules I live by have been self-imposed, based on the "I should do it all" philosophy. Perhaps it is time to stop and feel, to tune in to what I really want and really know. I think I've been searching for the "holy grail of balance" - to be right, satisfied and on top of things. But now I think true balance comes only when we are in touch with ourselves.
I'm always sure that there is a rock star or an artist somewhere deep inside just waiting to be discovered. Some questions that I am asking myself are: What do I want to learn in the coming months? What do I need to dump out of my brain to make more space for what I would rather focus on? Creative self, what enchantment and soul food are you hungry for?
Since being diagnosed with cancer, I now often ask myself, "How do I choose to spend my time and energy? " As I've said before, time flies when you have cancer. Time becomes a precious commodity. It's a question I ask when faced with a decision or an invitation. I try to choose carefully.