I talked to my daughter about my last blog post. Did she think parents should tell their children when they are diagnosed with cancer, or should they lie and spare their kids a terrible and painful truth?
Her reaction was viseral and immediate. She said she thought it was wrong to lie to children about a parent's cancer diagnosis. She said she would have been very angry if she'd found out later that she'd not been told the truth, even though she was only 10 years old at the time. My daughter said she knew from the vibes in the house and how her father was acting that something was very wrong with me. She said if we'd have chosen not to tell her the truth and if she'd found out later, she would have been angry at the dishonesty, would have resented not being told the truth and would have had difficulty trusting us thereafter. She felt the ONLY right thing to do is to tell a child the truth about a parent's cancer diagnosis.
The CR magazine article Losing a Parent quotes Paula K. Rauch, a child psychiatrist and co-author of the book Raising an Emotionally Healthy Child When a Parent is Sick “If a child is kept in the dark about the severity of a parent’s illness, they can feel like they were betrayed or lied to and may even feel unloved,” she says. “That can leave them with problems trusting the surviving parent or the other adults in their lives.” From what my daughter said me, this would have been true for her.
I wonder too now if knowing the truth at least gave her some sense of control. She could do something about it; she could make me cards and write me letters, pray for me, talk to her friends about what was happening, seek support. She knew what the problem was so she was able process it. Maybe for kids it's the same as it is for us adults- sometimes the limbo of the unknown is worse than the hard truth.
I have lost appendiceal cancer friends who have been in hospice and who have had young children, so I asked my daughter if the honesty should extend to telling a child that a parent was going to die. She hesitated at that. She said she didn't think she could deal with knowing a parent was going to die and living with that daily reality as a child, but that she would want to be prepared. She would want to know that it was possible her parent might die, so that when it happened it wouldn't be a complete shock, that some part of her might have been ready. She could have at least gotten used to the idea, the possibilty.
Sunday, January 25, 2009
I talked to my daughter about my last blog post. Did she think parents should tell their children when they are diagnosed with cancer, or should they lie and spare their kids a terrible and painful truth?
Posted by Carolyn Langlie-Lesnik RN BSN at 11:09 PM
Friday, January 23, 2009
CR Magazine is a new magazine published by the American Association for Cancer Research. The magazine seeks to connect groups of those affected by cancer in a collaborative effort. The CR stands for Collaboration->Results. It will take all of us affected by cancer; patients, advocates, caregivers, healthcare providers and researchers working together in a collaborative effort to one day see to see results, to see cancer defeated. I believe in the premise. I subscribe to and love the magazine.
The winter issue that was recently published had a great article: Talking With Your Children . The article advocates having an open dialogue with your kids about your cancer. I agree whole-heartedly.
Talking to my kids about my cancer diagnosis was very difficult. We all want to protect our kids from pain, we want to provide them with a stable and nurturing environment, we want for them to feel safe and secure. Telling our kids that we have a potentially life-threatening illness is very difficult. It causes them pain, it disrupts their sense of safety, it makes them feel insecure. When we tell our kids we have cancer, we cause them to have feelings that we as parents have always tried to protect them from. Its hard.
My own kids were 10 and 11 when I had to tell them I had cancer. I did keep the information age-appropriate, and I was as honest as I could be. I told them I had cancer of my appendix, that is was serious and that I was going to get the best treatment I could find for my disease. I didn't tell them I'd been told I had a very poor prognosis and had very limited odds of surviving even three years. They didn't need to know that at the time. But I didn't promise them I wouldn't die, either. I just told them I was going to do my best to live a long time; that was true.
I went to their school to talk to both of their teachers to let them know I had a serious cancer, would have to travel across the country for surgery and that I would be gone for several weeks. I asked the school to please let me know if my children developed any problems.
I let my kids know they could talk to me any time about how they felt or about any fears they had. I also told them if they wanted someone else to talk to they could talk to their dad or grandmother. I told them they could also talk to their teachers, that their teachers knew. I offered to take them to a counselor if they felt they needed that.
After I told them, one of my daughters woke up several times sobbing in the middle of the night. She'd climb into my bed telling me she had dreamed that I'd died. I couldn't tell her I wouldn't die. I instead told her to look at me, that I was doing well, and I was getting very good care. That seemed to be enough at the time.
It was tough.
The one good thing was that my cancer was rare. My kids went to school and told all of their friends their mom had cancer. Over the lunch table they heard many stories from children who had lost grandparents, aunts and uncles to cancer. They came home uplifted, though...not one friend had lost a family member to appendix cancer, only to brain and breast and colon cancers. None of their friends had even heard of anyone dying of appendix cancer!
I've communicated with other appendiceal cancer patients who have only told their children that their mother had a "really bad tummy ache" and needed to see a special doctor. I kind of wonder if the kids didn't already know their mothers had cancer...I know in my own house the phone rang off the hook at first, the kids saw their dad crying for the first time, flowers came to the house from many people, there were messages on the answering machine for my husband "We are so sorry". I can't imagine with all of the cancer talk at my house that they wouldn't have somehow overheard the word and known that their mother had cancer. And if my kids had thought they weren't supposed to know, they wouldn't have had the opportunity to talk to my husband and I as they did about my diagnosis, they'd have lost that opportunity for support. I wonder sometimes if the kids who were spared the truth developed a terrible fear of stomach aches for the rest of their childhood?
There's a link to another article, Losing a Parent: How do you prepare kids for a parent's death? at the main article's side bar. I've known several appendix cancer patients who have died leaving young children behind. One parent was a hospice patient, and the nurse helped the kids and the parent work together to make a "Memory Box" of mementos for the child to treasure. I've communicated with several parents of small children who have lost their battle, some have left memory boxes, one wrote her child a letter he can read when he is older. I know of a family with 5 children who lost their father to a house fire...the mother found a non-profit program (Rainbows)that helped children who had lost a parent. I know those kids now, years later, and they are doing well.
I know our cancer diagnoses are difficult for our kids, but I also know now that in the end the experience helps shape their character. My kids now have great empathy for those affected by cancer. They do speeches at school advocating cancer research and telling our story, they have friends over to make appendix cancer ribbons to distribute.
I've learned that kids are resilient. They are stronger than we know.
Posted by Carolyn Langlie-Lesnik RN BSN at 10:38 PM
Sunday, January 18, 2009
For the past several days I've been posting what I learned at the recent Frontiers in Cancer Prevention conference, I learned so much there. I am very grateful for the opportunities the American Association for Cancer Research has given me via the Scientist-Survivor Program.
I attended many other prevention sessions at the conference. Among them chemoprevention...medications that may one day be given to prevent cancer in high risk individuals. Another session was dedicated to inflammation's role in cancer; there is an inflammation-cancer connection also.
While we all want a pill or food or chemical that will be a magic bullet in preventing or curing cancer, odds are there won't ever be any one thing that cures or protects against all cancers. Cancer is actually 200 different diseases and even those 200 cancers can be different from each other. Biologically, even two of the same types of cancer, such as breast or colon cancer, can be very different from each other genetically or epigenetically. I get emails often from people asking me what I think of the latest chemical compound, mushroom or vitamin...will it cure their cancer, maybe? Is it the "magic bullet"? Probably not. If it sounds too good to be true, it probably is.
Seventy percent of all cancers can be prevented. We can prevent cancer, and maybe prevent a cancer recurrence, by engaging in a healthy life style. We can avoid exposure to cigarette smoke (which has been implicated in more than 10 different types of cancer including pancreatic cancer, not just lung cancer). We can avoid excess alcohol consumption. We can avoid asbestos or other environmental toxins. We can eat a healthy diet with lots of phytochemicals from fruits and veggies. We can exercise. We can be vaccinated or have our children vaccinated against diseases like hepatitis and HPV to lower risk of liver and cervical cancer. We can spend some time out in the sun and/or take vitamin D supplements. There's lots we can do....even though it might take some time and effort on our parts. We can find weapons to use in our personal fight against cancer.
I for one am making changes. I think living a healthier lifestyle just takes working at it for awhile until it become habit. I did quit smoking years ago, but gained weight in the process that I never lost; my BMI is now greater than 25. I don't exercise a lot as I spend too much time in front of my computer. I eat too much red meat, too few veggies and too little fruit.
I want to live a healthier lifestyle to prevent cancer, but I also love to backpack and distance bike. I've become a backpacker since my cancer diagnosis. Backpackers are obsessed with weight and size. We want to carry less weight....I use a postal scale to measure ounces to try to shave weight from my backpacking gear (after struggling to hike mountains with 40 lbs. in my pack a couple of years ago). I have a tiny stove that with weighs 2 ounces, together with fuel it weighs 4 ounces. I have a 2 lb. tent (also a bigger 4.5 lb. tent I like much better). I want to reduce the weight of my pack; 25 lbs. instead of 40 would be ideal though I couldn't bring the good stuff at that weight. Then I got to thinking; I am about 25 lbs. overweight. I'm carrying an extra 25 lbs. all of the time. Maybe if I get skinny and fit I can bring better stuff when I backpack!!! Hunks of cheese instead of Ramen noodles! The big comfy 4 lb. tent instead of the 2 lb. cramped "tunnel" tent. The warmer sleeping bag.
I also like to distance bike. I have a 1993 great Trek bicycle that has an aluminum frame and titanium wheels. A newer and lighter carbon fiber bike weighing about 10 lbs. less would be great for biking...but cost about $1500. Got to thinking, I could lose the weight and ride a lot lighter for free.
If I lost the weight and got in shape, I'd feel better about myself and could wear my cute skinny clothes again, use better stuff backpacking, be faster on my bike, get to experience the natural endorphins....AND cut my cancer risk!
Hmmmm...lots of benefits to a healthier lifestyle. Look better, feel better, do more, have more energy, less cancer risk.
Since the conference I've signed up at my local YMCA and am working out 6 days a week now for at least 30minutes a day. I joined a running program at the Y (I've NEVER run before), so have a running group and a running coach now. I run three days a week, one day a week with a group that keeps me honest and holds me accountable. I'm told I'll make lots of friends in the group. I bought the good running shoes and am already signed up for a 5K run in April, so have some motivation to stick with it. I'm starting a Tai Chi class with a friend this week. The cost for all of this is less than I used to spend on cigarettes when I smoked, and the time is less than the time I used to spend watching TV years ago. And I stand to benefit greatly.
I'm also eating better...I am eating less red meat, more fruits and veggies and trying to drink green tea once a day. I think green tea is kind of tasteless, (I do espresso coffee regularly), so I use 4 bags of green tea to a mug once a day...with 4tea bags it has some punch/taste! It's said that 3-4 cups of green tea has great health benefits...with 4 tea bags to a mug, I get all of the benefit in just one cup! I am also now taking Vitamin D3 supplements as I live near Chicago where winters are long and dark.
So, I'm making changes...in part for cancer prevention, but in greater part as a quality of life endeavor. If I reach my goal of being skinny and in shape by April ` 1st, I'll look and feel better. I'll be in good enough shape to have more fun biking and backpacking....plus will enjoy the bonus of making new friends in my running and wilderness clubs. Definitely worth the effort.
Posted by Carolyn Langlie-Lesnik RN BSN at 5:36 PM
Saturday, January 17, 2009
American Association for Cancer Research: Frontiers in Cancer Prevention Post #5: The Human Papillomavirus (HPV)
The Human Papillomavirus Virus (HPV)
The human papillomavirus (HPV) is a sexually transmitted virus. It can be transmitted via vaginal, anal or oral sex. There are several types of HPV viruses.
HPV virus infection causes no symptoms, so those infected with the virus may be unaware they are infected. Up to 80% of those sexually active become infected with the virus, even those with few partners. Most cases clear spontaneously, but those that do not pose a cancer risk.
The human papillomavirus is known for its association with cervical cancer, but HPV infection also increases risk for cancers of the vagina, anus, penis, mouth and oral cavity. HPV viral infection is also responsible for venereal warts.
There is now a vaccination that offers protection against the HPV virus. While it does not offer protection against all strains of the HPV virus, it protects against HPV strains responsible for 70% of cases of cervical cancer and 90% of the HPV viruses that cause genital warts. The vaccine does not protect against all strains of the HPV virus, so those who receive the vaccine still need to have routine PAP smears. The vaccine does not hasten clearance of HPV infection once one is infected.
There are some issues remaining to be resolved in regards to the vaccine. The vaccination is currently rather expensive, approximately $360 for the series of three vaccines over a 6 month period. Right now, The FDA has approved the vaccine, Gardasil, for girls and women aged 9-26. It is best given to women before they become sexually active. Ongoing long term studies are in progress to learn how long the vaccine is effective. Research is also ongoing as to whether the vaccine is also effective in boys and men, who can acquire and transmit the virus, and who if infected may be at risk for anal and penile cancers.
Future advances hope to make the vaccine more affordable. It is also hoped that in the future the vaccine will require only a single administration instead of the series of three vaccinations over several months now required.
Posted by Carolyn Langlie-Lesnik RN BSN at 12:16 PM
Friday, January 16, 2009
DIET AND EXERCISE
There were several presentations about the effects of diet and exercise at the Prevention meeting.
Several foods and dietary habits are associated with decreased cancer risk. Diets high in fruits and vegetables, whole grains, healthy fats (like olive and canola oil), green tea and red wine (one glass a day) are associated with a decreased cancer risk. Research is also being done to investigate the possible cancer-fighting properties of curcumin (found in the popular Indian curry spice turmeric). Reservatrol, a phytochemical found in the skin of red grapes, is also being investigated for anti-cancer properties. Natural compounds in the vegetables broccoli, cauliflower, cabbage, kale, brussel sprouts are believed to boost the body's ability to repair damaged DNA and possibly prevent cells from turning cancerous.
Phytocehmicals are chemical compounds in fruits and vegetables that are felt to offer the protective cancer benefit. These chemicals give fruits and vegetables their color and flavor. It is believed these chemicals evolved as natural protection for plants against bacteria, fungi, viruses, and damage to cell structures, especially DNA, from the environment.
There may come a time when these phytochemicals are mass produced and sold as supplements in drug stores...but why try to duplicate what nature has already provided? The perfect solution may be to eat an orange....or some broccoli or some grapes. I read once that there are 200 different phytochemicals in a single orange. It could be the amounts and combinations of these phytochemicals chemicals in these foods accounts for their health benefit. While nutrients obtained from healthful foods protect against cancer, nutrients obtained from over-the-counter supplements are not always protective. Beta carotene supplements are now associated with increased lung cancer risk in smokers, and too much folate and vitamin B12 may increase the risk of methylation and the epigenetic silencing of genes. It seems the best way to obtain many of the helpful compounds is directly from the healthy foods.
On the flip side, some dietary habits encourage cancer....diets high in red meat and alcohol, for instance, encourage the formation of some kinds of cancer.
The cancer benefit of exercise was also discussed at the meeting. As it turns out even for those who are overweight there is a cancer prevention benefit from exercise. Cancer risk is decreased 30-40% in those who exercise vigorously for four hours a week and decreases 20% for those who exercise moderately for 5 hours a week. There is an exercise benefit even for those who are overweight.
Posted by Carolyn Langlie-Lesnik RN BSN at 6:56 PM
Thursday, January 15, 2009
Obesity is epidemic in our country. Over 60% of the US population is overweight, 30% are obese. John Hopkins School of Public Health in a press release estimates that by the year 2015, 75% of adults will be overweight; 41% will be obese.
It has been found that obesity increases the risk of cancer death and that higher grade tumors (more aggressive tumors) are more common in those who are obese. Obesity has been especially associated with colon, breast and prostate cancers. Ovarian cancer studies have shown that ovarian cancer recurs sooner and that life expectancy is shorter in women who are obese. Weight gain following a breast cancer diagnosis greatly decreases a woman's chances of surviving the disease.
Obesity is associated with insulin resistance. When our bodies become insulin resistant, we produce more insulin in an attempt to compensate. Higher levels of insulin and a substance called insulin-like growth factor are found in those who are obese. Insulin-like growth factor causes cells to reproduce and prevents cells from dying, which can contribute to cancerous growth. Vitamin D is also sequestered in fat cells. It is also thought that fat cells produce hormones or compounds that make cancer grow more aggressively.
Overall, research shows that increased weight is associated with increase cancer recurrence and decreased cancer survival...recurrence rates are doubled and there is a 60% increase in cancer death rate associated with obesity. The drug Tamoxifen, used to treat breast cancer, is less effective in those who are overweight.
A higher body mass index is associated with a higher cancer risk.
A healthy BMI is 18.5 to 24.9. A BMI of 25 or higher is considered overweight. A BMI of 30 is considered obese. You can calculate your BMI at this NIH link: Calculate your Body Mass Index
Posted by Carolyn Langlie-Lesnik RN BSN at 12:40 AM
Wednesday, January 14, 2009
I was privileged to attend a wonderful session on Vitamin D presented by Dr. Michael Holick, PhD, MD, and Professor of medicine, physiology and biophysics. Dr. Holick has been studying Vitamin D for 30 years and was granted General Clinical Research Center Excellence in Clinical Research Award by the National Center for Research Resources at the NIH in 2006.
Vitamin D has long been used to prevent the bone disease rickets in children and to promote bone health. Current research now links vitamin D to reduced cancer risk. Dr. Holick presented extensive research evidence to support his claims of a vitamin D-cancer connection. A recent study, the Creighton Study showed a 60% decrease in cancer risk over four years in middle-aged women taking 1100 units of Vitamin D3 daily. Vitamin D is now known to regulate 200 different genes and to inhibit cancer cell growth. As it turns out, the most aggressive and dangerous form of skin cancer, melanoma, occurs most on areas of the skin not exposed to sunshine and is a cancer has been found to be a associated with a vitamin D deficiency.
Vitamin D is actually a hormone. All cells in the body have receptors for Vitamin D. Vitamin D deficiency is very common as it is almost impossible to obtain adequate Vitamin D from the foods we eat. Our body's main source of vitamin D is sunshine. Fourteen different cancers have incident rates inversly proportional to the amount of ultraviolet radiation(rays found in sunlight)in the environment. These cancers occur more frequently in areas with less sunlight and less frequently in areas with greater sunlight. As early as 1941 it was discovered that cancer incidence was higher in the northern United States. Vitamin D deficiency is being associated with several types of cancer including breast, colon and prostate. There is much evidence that Vitamin D affects the immune system.
We live in an age where sun exposure is avoided as it has been thought to promote skin cancer and cause wrinkles. In the US Vitamin D deficiency is most pronounced for those who live in the northern United States (anyone living north of Atlanta, Georgia) as we do not have enough sun exposure in northern winter months to create Vitamin D; the sun’s rays in the winter are not sufficient for producing Vitamin D. We are also a generation that stays indoors and out of the sun as we spend so much time in front of our televisions and computers. When we do venture out, we are wearing sun screen, which prevents our skin from manufacturing Vitamin D. Our body can produce enough Vitamin D to meet our needs with just 15-20 minutes of summer sun exposure to arms and legs 3 times a week. It is now recommended that you put your sun block on in the summer after you have been outside for 15-20 minutes.
Sixty percent of us are also overweight, so may not be able to utilize the Vitamin D we do take in as vitamin D tends to become trapped in the fat cells. Also among those at particular risk for vitamin D deficiency are those with dark-skin and the elderly as darkly pigmented and elderly skin does not as easily manufacture Vitamin D from sunlight. A 70 year old only makes 1/4 as much vitamin D as a 20 year old exposed to the same amount of sunshine. Current vitamin supplementation through multivitamins is less than what is felt to be sufficient, Dr. Holick suggests about 1000 units per day. Additional supplementation may be recommended in the winter in northern latitudes or for those over 50 years of age.
Vitamin D deficiency is felt to be epidemic in our society, and is now also being associated with the development of diabetes and several autoimmune disorders such as MS and rheumatoid arthritis.
Interesting, I have a new oncologist. I asked him his thoughts on vitamin D and cancer. He said he is now testing his patients for vitamin D deficiency, and almost 50% of his cancer patients have a severe vitamin D deficiency.
The blood test to determine if you are vitamin D deficient is 25-hydroxyvitamin D. Normal levels should be at least should be at least 30-60 ng/mL. Toxic levels are those above 150 ng/ml.
For more information, you can go to the website The UV Advantage
You can view Dr. Holick's excellent lecture online at The Vitamin D Pandemic and its Health Consequences
Posted by Carolyn Langlie-Lesnik RN BSN at 10:29 PM
Tuesday, January 13, 2009
I was once again privileged to be invited to an American Association for Cancer Research conference as part of their Survivor<->Scientist Program. This conference, Frontiers in Cancer Prevention Research took place in Washington DC in November. At the AACR conferences, those of us who are survivors and advocates are able to access the great minds of scientists from all over the world who have devoted their lives to searching for a cancer cure. We are also able to meet other survivors and advocates from around the world. We attend sessions and listen to presentations about the latest discoveries in the field from the scientists doing the research. I am inspired when I attend these meetings. I become very hopeful when I see the progress being made against this monster of a disease.
I want to share here what I learned at this most recent conference. This particular conference inspired me to make many personal changes in my own life. I will share here what I learned from attending many of the sessions in a series of blog posts over the next several days.
EPIGENETICS: Epigenetics is a new field in cancer research. While we often hear that cancer is a genetic disease, or find many people who feel that cancer is "in your genes" and therefore unavoidable, in reality only about 10% of cancers result from the genetic defects inherited from our ancestors. In a long term study of identical twins, when one twin had cancer, only 15% of the identical twins developed the cancer. If cancer were a disease inherited in our genes, 100% of identical twins would share a cancer history.
Different genes in our DNA have been discovered that promote cancer or protect against cancer. Some genes can cause unrestricted cell growth characteristic of cancer (this may be helpful when organs are being formed before birth or when tissues are being repaired). Other genes are protective against cancer and destroy cancerous cells before they can metastasize or form tumors. It has been discovered that these genes can be turned on or off, so that a gene protective against cancer no longer protects, or a gene that causes uncontrolled cell growth can be turned on when it shouldn’t be. This occurs because of a biochemical process called methylation. These changes are referred to as epigenetic changes.
In research it has been discovered that the DNA of identical twins becomes less and less similar as the twins age, which accounts for the differences in the appearances and health issues of identical twins as they grow older. When you compare their genetics at birth, they are identical. When you compare their genetics as they age, though, they become genetically very different from each other. I personally worked with two identical twin sisters for a few decades. When I first met them they truly looked identical, now they are no longer identifiable as identical twins, their appearances have changed a lot over the years. I’m not sure if you would even notice a sister resemblance in them now. Epigenetics have caused their genetic expression to become different as they have aged.
The field of epigenetics has implications in the treatment and prevention of cancer. It is believed epigenetic changes occur based on our behavior...that things like smoking and exposure to environmental toxins can cause epigenetic changes that promote cancer or that effectively "handcuff" genes that protect against cancer. Our diet may alter our epigenetics in good or bad ways. This offers great potential for prevention of cancer. It also offers a great potential for cancer treatment. It is much easier to turn genes on and off through epigenetics and demethylation than to correct a mutated gene that is inherited. Currently there is an ongoing clinical trial using drugs that correct epigenetic changes in cancer patients.
To learn more, you can view this link to a NOVA program about epigenetics.
Nova Science Now: Epigenetics
In this NOVA video about epigenetics, two mice who are clones with identical DNA have had certain genes silenced or turned on. They have had epigenetic changes created by scientists. The result is identical twin mice that have totally different body structures and hair color:
Posted by Carolyn Langlie-Lesnik RN BSN at 9:32 PM
Sunday, January 11, 2009
I learned tonight that a family member I am close to, who supported me through my own cancer journey and who is my age, in her 40s and with a daughter still in high school, has just been diagnosed with cancer. Her mother died of cancer when she was a young child. She lost her father to cancer before he was able to meet his first grandchild. She more recently lost her step-mother to cancer. Then I was diagnosed with cancer. Cancer has traumatized her life already. Now cancer is back to terrorize her, this time on a personal and very intimate level. So far she is not accepting phone calls...but as soon as she is, I need to talk to her, to be there to support her as she supported me.
I'm trying to think of what exactly I want to tell her....so far I've thought of these things. They apply to all of us with a new cancer diagnosis, so maybe they will help someone else here:
*I know you feel like the bottom has fallen out of your life, that the future as you had planned it now seems insignificant, lost. Your normal, everyday life as it was before you received your cancer diagnosis was taken away from you the moment you became a cancer patient. You want your normal life back, even with it's trials and troubles...the life you at least felt you had some control over.
*I know you are terrified and angry and fearing the worst...thinking of all you stand to lose, thinking of all of the people who will be hurt by your diagnosis, thinking of the fear and pain this will cause your husband and children. I know you are terrified of abandoning your husband and children.
*I know your thoughts are not positive, and that you fear that the fact that your thoughts are not positive will condemn you (they won't).
*I know that the word cancer, to you, means a likely death sentence, as it was for your own parents. You fear causing in your own children the sense of loss you felt when your parents succumbed to this disease.
But I think of these things I have learned through my own journey that I need to also tell her:
*Your mother and father were diagnosed with cancer decades ago...so much has changed since then. In some cases cancer can be cured now, in others it can be a chronic disease for decades and not a death sentence. We live in an era where there are new and amazing advances being made against this disease every day. My own involvement in the Scientist-Survivor Program has given me a new hope for those of us fighting this disease.
*Many people, like myself, who were once considered beyond hope and help, survive many years cancer free. There is no one cancer that has killed ALL of it's victims. There are survivors of every type and stage of cancer. There's no reason why you can't be one of the survivors
And then the more practical things....
*Become educated and knowledgeable about your cancer, bring a written list of questions to your appointments, expect answers to your questions. If you don't feel your questions or intelligence are respected, get a new doctor who will work with you as part of your team and value your concerns.
*Chemo isn't as bad as it's reputation...nowadays they medicate and premedicate you to prevent many of the side effects that used to give chemo such a bad reputation (I was on chemo for 7 months and was nauseated only once, never threw up, GAINED weight and enjoyed eating (and athletic training)while on chemo. My Tuesday "Chemo Group" was fun, we laughed a lot and had a kind of "gallows humor" only cancer patients can enjoy. I drove myself to and from chemo and went grocery shopping on the way home from chemo. My life on chemo was pretty normal.
*Not everyone loses their hair to chemo, but if you are expected to lose your hair to chemo, make sure to get a prescription for a "hair prosthesis" (so your insurance will pay for a wig if you need one). See a stylist to help you find a wig that matches you current hair color, texture and style BEFORE you lose your hair..which will likely be after the first few treatments. And when your real hair grows back it may be different..a different color, a different texture, and maybe even naturally curly (or straight if it used to be naturally curly). Also, if you lose your hair, you lose ALL of your hair, not just the hair on your head.
*Don't suffer any chemo side effects you may have as "expected"...most of them can be treated so that you can live a pretty normal life while on chemo. Don't assume nausea and vomiting and feeling terrible are normal chemo side effects. I communicate with a woman who has advanced cancer that is surgically untreatable and who is on chemo who is still running marathons and working full time.
*Being in the cancer community can be a blessing...you meet very "real" people who share a lot with you and your new cancer values and perspectives and who inspire you. It's a great growth opportunity. You get the great feeling of belonging to an almost sacred society.
*If you can't sleep after chemo, maybe steroids are causing you insomnia, see if they can tweak the steroids or give you a sleeping pill for chemo days
*Seek peace of mind and emotional well-being through whatever and all channels work for you...support groups, counseling, antidepressants, a cancer survivor buddy, art, music, poetry...do whatever you need to do to keep your sanity and protect your mental health..your mental health is every bit as traumatized by a cancer diagnosis as your body and deserves equal treatment. We are our mind and our body and our soul and our spirit...to only treat your body and to disregard all of the other parts of our being is wrong.
*Find a way and allow yourself to express the anger that you are justified in feeling. Watch the movie Griffin & Phoenix if you need examples of justified anger and the need to release it.
*Be careful with over-the-counter healthful supplements...some can interfere with the effectiveness of chemo...everything "herbal" and "natural" may not be not good for you.
*Set limits if you are overwhelmed with too many well-meaning people...sometimes well meaning people can say and do the really wrong things...just let that roll off your back and avoid them next time if you can
*Nurture your spiritual side in whatever way is most helpful...writing, singing, praying, making music, yoga, Tai Chi, meditating, hanging out with people who inspire you
*Treat yourself to something special...a weekend or week away all by yourself or with a friend to help you regroup.
*Let yourself feel whatever you need to feel while going through the process. There are no wrong feelings, only honest feelings
*Don't expect your life to eventually get back to your "old normal" life...it won't, and that's okay...sometimes the "new" after cancer normal is richer and more meaningful...and less full of insignificant things you find don't matter after all
Posted by Carolyn Langlie-Lesnik RN BSN at 11:59 PM