Standing Tall

Here's something that will help you look and feel better--no matter who you are or what issues are confronting you.

Good posture.

It seems a trifling thing and so it is easy to overlook.

When we are ill, worried, tired or frightened we close in on ourselves. It is both a physical and emotional response. It is also a protective reflex, but actually does just the opposite. Bad posture compromises our health.

Please pay attention to your posture. It is an important tool that will improve your overall physical, mental and emotional health.

Standing, sitting and walking with a straight back has many benefits:

• better breathing--you can take deep breaths which will increase how much oxygen you bring into your body and it will help relax you
• proper alignment of muscles and joints will mean that they can do their work without being inhibited or injured
  
• gives your internal organ the room they need to operate--e.g. acid reflux is greatly decreased, lungs can expand, your throat is open
  
• assists circulation--the health of your organs and tissues depends on proper circulation of blood and lymph fluids
  
• enhances self-image--standing tall makes you feel better about yourself-- you will view yourself as more confident and in charge and so will others
  
• improves muscle tone--prevent stiff muscles and tension in your back and neck by using good posture
• sends your body the message that all is well--or will be--a tense body produces stress that causes anxiety--avoid the negative spiral that a tense body can start

You may say--"Come on. I have every reason to slouch. I have bigger things on my mind. Will paying attention to my posture really help me?"

It will.

It really will.

Plan for Cancer After Care and Follow-Up

The post treatment phase of cancer care is, for the most part, a neglected area. This situation really needs to change. As cancer treatments are nearing an end you need to ask for an "After Cancer Care Treatment Plan."

Here is some information that will help you understand what a Cancer After Care Plan is and what it can do for you.

"Follow-up care" is-- regularly scheduled appointments over the next 2-5 years that provide an ongoing assessment of your health.

Purpose--to identify changes in health, check for signs of recurrence of your cancer and/or metastasis of your cancer. You doctor will also monitor any side effects from your treatments and determine if any late effects are developing. If you experience any significant changes in your health in- between appointments contact your physician.

Frequency of visits--depends on the type of cancer you experienced, but typically survivors return to their oncologist every 3 to 4 months during the first 2-3 years after treatment and once or twice a year after that for the next 2 years.

Which physician provides the follow-up care-- often, at least for the first few years, you can receive follow-up care from your oncologist. Some insurance companies have specific guidelines --ask the clinic manager or social worker for help with this.

Your Primary Care Physician should be kept informed about your medical information. Ask your oncologist to send copies of all summaries and reports to your Primary Care Physician.

Information that should be included in a "Cancer After Care and Follow-Up Plan--

• Date of diagnosis
• Physician, practice, hospital etc--all pertain names, phone numbers and addresses
• Type, stage and grade of cancer
  
• Summary of treatments --dates, location, complications, side-effects
  
• Summary of drugs--dates, dosages, who prescribed and why
• Suggested schedule for follow-up visits
• Follow-up tests
  
• Symptoms you should watch for --and what to do, who to call if symptom occurs
• Common long-term and late-effects of the treatments you received
  
• Suggested life style changes
• Referrals to agencies that can help you with physical, emotional, sexual, social, spiritual issues

All of this information and more is covered in a 2005 report entitled, "From Cancer Patient to Cancer Survivor: Lost in Translation." Here is a link that offers some offers additional resources and links that are interesting and helpful.

http://www.iom.edu/?id=31512

Asking for and receiving a Cancer After Care Follow-Up Plan may take some effort but it will be well worth it. You need to have an understanding of exactly what your follow-up care will look like. You need a plan.

Be proactive in this area, because, as we say at Chemossentials, reclaiming body, mind and spirit is essential to restoring your well-being.

Survivorship--An Interesting Label

Many of my friends don't like to be called a "Cancer Survivor." They describe a variety of reasons for this objection.

For some there is the fear that using the term "survivor" tempts fate. How do you know that have you survived? Cancer can return. Are you ever safe?

Others say that they have friends who worked hard to rid themselves of cancer, but they died anyway. They feel like they are disloyal to those loved ones by calling themselves survivors when really, they just feel lucky.

Some think the term "survivor" is overused to the point where it no longer has meaning. In years past you needed to be years away from diagnosis and treatment in order to be labeled a survivor. Now you receive the label as soon as you are diagnosed. What does the term "survivor" mean in that context they ask.

Friends say that they are confused with the current trend of calling family members and friends "cancer survivors. They don't argue that these people should be acknowledged for all that they do and go through--but where do you draw the line?

Where did all of this start? I did a little research and found out that Dr. Fitzhugh Mullan is credited with being the first person to coin the term "cancer survivor." The source of my information is the transcript for Neal Conan's Talk of the Nation NPR broadcast on June 9. 2004.

The transcript of the program is available for purchase so I can't give you a link to it, but I can tell you about the show. You can find this transcript in the National Public Radio Archives.

Neal Conan started the program by saying, "According to the latest estimates, there are 10 million Americans alive today who've had cancer which raises a host of issues about after care and screening and depression and health care and stigma, many of which are symbolized by the controversy over what we call people who live with this set of diseases. For many, 'cancer survivor' implies that they've been cured or that they've won a heroic struggle, and neither may be accurate."

Dr. Mullan talked about his relationship to cancer and how it lead him to use and embrace the term "survivor." In 1975 when he was 32 years old he discovered that he had a "major cancer" in his chest. He had surgery, radiation and chemotherapy. Mullan was sick, fearful of dying and desperate to know that he would be cured. What he came to understand was "..for most everybody with cancer, the binary notion of either death or cure ...isn't the reality. The reality is kind of a DMZ, a kind of purgatory in which, for a long time, it may not be clear exactly the outcome with lots of complicating issues that nobody really focused on."

He started to think of this period of time as the seasons of survival. He wrote an article published in the New England Journal of Medicine 1985 that developed this concept and coined the term "cancer survivor."

Mullan explained that if you get past the acute period where you are being treated for the disease, you will enter a longer period where the outcome of your disease is uncertain. You deal with medical complications, social, vocational and financial issues. If you get through that you continue on to what he calls the period of permanent survival--meaning that whatever problems you have will stay with you for the rest of your life.

You get to keep the good things that occur during this process too-- like learning how tough you can be. And that is what being a survivor is--dealing with this entire range of experiences.

Dr. Mullan says that while it may not be a perfect term, so far he hasn't found anything better.

No one else has either--or so it seems. Perhaps it is the correct word. Perhaps there isn't a word that really fits.

Dawn was the last person to call into Talk of the Nation that day. She said, "...I'm wondering why we need a term, why can't we just say We're people who were diagnosed and are living with cancer?"

That's a solid thought, but it sure doesn't fit on a tee shirt.

So what are your reactions and opinions on this term? Do you have any suggestions?

Don't Ask Don't Tell

A dear friend of mine has non -small cell lung cancer. She tells me that when people hear what type of cancer she has, they assume that she is/was a smoker. One of the first questions out of their mouths is "How did you get this? Did you smoke?"

Lung cancer has inflicted another ugly and painful change in her life-- she is constantly being judged. People seem to feel, or at least imply, that she is getting what she has coming to her. She told me that even some medical personnel were caught up in this blame game.

My friend and I spent some time exploring reasons why people felt it was necessary to make these assumptions and ask such loaded questions. We came up with a few ideas, like rampant foot-in-mouth disease, insensitivity, ignorance and/or fear.

It's the last reason that I think is the most likely culprit. I think that people are searching for a reason to distance themselves from you, the person who had to have done something so terrible that you called this down upon yourself. There has to be a reason that this happened to you. There has to be a reason why it won't happen to them.

I've had personal experience with this phenomenon. My younger daughter has significant disabilities. She has amazing gifts too but what the world at large sees is an individual who is non-verbal and has obvious cognitive deficiencies.

When she was younger most of our play dates were with a mother and daughter that we met at OT, PT and speech sessions. Inevitably, when we were walking around the zoo, shopping or just having lunch someone would come up to us and comment on our children. I would be treated like a saint while my friend would be treated like a criminal. The reason for the discrepancy in our treatment was just this, my daughter is Korean and I am not. My friend's daughter was her obvious biological child. I was judged saintly because I adopted a child with a disability. She was viewed with suspicion because her offspring's disability likely had something to do with questionable activities during pregnancy or bad genes that she willfully passed on.

Having a child with a disability is a scary thing. People want to find a way to assure themselves that it will never happen to them. That's where the judging comes in.

The disability community gave me a useful way of looking at this situation. They talk about the world in terms of being disabled and not currently disabled. It's a startling thought--but one that we should all consider. Most human conditions are transitory. Understanding that will help us be more open to all the possibilities life hold for each of us --and then maybe more compassionate and understanding of what it is like to live with these realities.

Anyone can become disabled, anyone can have cancer.


My friend wonders if the question--what did you do to get cancer-- implies that if you did smoke then you are less deserving of being helped.

She points out that whether you did or you didn't smoke, eat red meat, use deodorant, take HRT,
do drugs, etc that fact is that now you have cancer and you need treatment.

My friend is smart and quick- witted and she can take care of herself in these types of situations. But why should she have to? She is and always has been a non- smoker--but really why should she have to say that?

So here is the take away message, be careful about the questions you ask. Be even more careful about the way you judge others. It's a tendency that serves no productive purpose.

Getting a Second Opinion

QUESTION: Is it important to get a second opinion after you've received a cancer diagnosis?

ANSWER: YES! Absolutely!! Just do it!!

REALITY: Asking your physician for a referral to another doctor can be daunting.

You may worry that you will insult your doctor by appearing not to trust his or her abilities.

You may be concerned that asking for a second opinion could, in some way affect the type of care that your physician will provide in the future.

It is also likely you feel pressured for time. You want to start your treatment as soon as possible. You want the cancer gone--NOW.

For all of these reasons--and more--you may want to talk yourself out of getting a second opinion. But don't. It's important to spend some time planning how you and your medical team will approach your care.

Here are some things to consider that may help you take this important step:

• Physicians themselves ask for second opinions when they receive a serious diagnosis. "I've taken care of cancer patients for a long time. I have never taken care of a doctor who didn't get a second opinion." Vincent T. DeVita, Jr. M. D. Fromer Director, National Cancer Institiute, as quoted in Fighting Cancer by Annette and Richard Bloch.
• Asking for a second opinion does not have to imply a negative--instead it means that you want to investigate all possible treatment options.
• Some health care insurance plans require a second opinion.
• Medical knowledge in speciality areas is increasing at an amazing rate--you need to learn what other specialists can tell you about how they would treat your particular type of cancer.
• Typically you are not putting yourself in danger if you take 1-2 weeks to gather more information. Emergency treatment is a very different situation and will likely present itself in a way that makes it very clear that a decision needs to be made quickly.
• Getting a second opinion is considered a standard practice. If your physician is offended by this, then you should wonder why.
  

Your physician or someone one in the office should be able to direct you to other qualified doctors in the medical speciality area. The office should even be able to help you set up this appointment in a timely fashion.

Do this for yourself. Get a second opinion.

Managing cancer's side effects--staying ahead of the problems

Managing pain has become a much more effective process. The variety and types of drugs have greatly expanded and improved. The methods of dispensing the medicine has also improved, for example you can receive relief from pills, via your IV or through a patch.

I think that one of the most effective and important improvements in pain management is in the way we think about controlling the pain. The emphasis is on staying ahead of the pain -- not waiting for the pain to come to you. Taking pain medications at regular intervals is the best way to accomplish this goal. The idea is to prevent pain's physical, chemical and emotional changes from ever getting a foothold in your life.

The lesson we learned about preventing and controlling pain should be applied to other areas of your life too--especially while you are dealing with cancer treatments.

Here are some ideas about how you can stay ahead of the most likely problem areas:

• HYDRATION-- Stay hydrated--inside and out. Keep a water bottle near you--sip from it through out the day. Have regularly scheduled tea or juice breaks. Use smaller cups and glasses so that you aren't overwhelmed by portion sizes. Now that fall is here consider using a room humidifier. It will help your throat, nose and skin.
  
• NUTRITION--Eat 6-8 small meals a day. Serve small portions on small plates. Silverware can give off a metallic taste so get some fun, colorful, sturdy plastic knives, forks and spoons. Don't eat in bed. Sit at a table for each meal or snack. Try to remain in an upright position for 10-15 or 30 minutes after you eat.
  
• CONSTIPATION--not the most glamorous of topics, but hey, we're friends, we can talk about anything. Constipation is going to happen--the combination of taking pain meds, not being as active, changing eating patterns to name a few will wreak havoc on your system. Don't wait to deal with the uncomfortable side effects of constipation. Take all the meds that your medical team suggests--stool softeners, extra fiber pills etc. Also try adding 1 or two prunes to each meal. Add prune juice to your smoothies. Get up and walk around several times each day.
  
• EXERCISE--try to get outside and walk. It doesn't have to be far. Experiencing the fresh air and walking, even a short distance will be beneficial. Consider using exercise bands to keep your muscles in shape. Stretching exercises are good. Many exercise programs have been modified so that you can do them sitting in a chair. Consult with your health care team and find the right exercise program for you.
• SCHEDULE FUN--establish a movie night with family and friends. Even if you think you can't last the entire length of the film--give it a try. Have a film festival composed of the great comedies. Laugh and enjoy. In addition to giving you something to look forward to it offers your family and friends a way to participate. They can suggest and procure the movies, they can organize the room and determine the meal. It is a great way to spend a weekend evening. And of course if you are feeling like it you can see this movie at a friend's house or at a theater.
• KEEP A JOURNAL--this is a wonderful way to exercise some control over the crazy and frightening things that are happening to you. Keep track of your journey--but don't just record the negatives--try keeping a "gratitude journal."

Be proactive. You are the one in control. Dealing with cancer can make you feel powerless, but you don't have to settle for that. Staying ahead of the of the side effects will help you reclaim control of your body, mind and spirit.

Counteract the effects of cancer through Mind-Body-Spirit Connection

Whether you think in terms of mantra, mediation, prayer, or affirmations, setting your mind and spirit on a positive pathway will help to heal your body.  

There is a lovely Lakota prayer that I particularly like, "Whether the path is easy or difficult, I will not fear."  

That last word, "fear" is really what it is all about for me.  I need to rearrange my fears.  I need to put that energy to use to help me.  By having an affirmation (or mediation, prayer or mantra) that I can say throughout the day I fill the spaces in my mind and spirit with positive ideas.  I dwell on good things.  I start to believe that I will not fear and then little by little I don't.  My body feels better. 

Sometimes it is that simple.  Sometimes it takes a lot of concentration and effort. 

And just so I don't come across like a preachy, know-it-all -guru want-to-be, here is another thought that I hold in my spirit and mind, "A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort."

Sometimes that's enough to get me through the day.  

November is National Care Givers Month

Last month when I was volunteering in the Survivor’s Tent for the Strides for Life 5K Walk in Minneapolis, I noticed that for every survivor I greeted, there were 3-5 people accompanying them.  These people were their support team, the care givers who helped them or were currently helping them through their treatments. They were family members, friends and coworkers who drove them to their appointments, cooked them meals, called them just to check-in, sent the cards, and gave them sentimental gifts. They were the ones who kept track of the chemo schedule and made sure that a good dinner or silly movie was always available.

Chemossentials recognizes the need to say thank you to these very special people.  We also understand how difficult it might be right now to shop for thank you gifts. Chemossentials can help. Check out our “Giving Thanks” package – it provides an assortment of small gifts (including cards and packaging), that say thank you in a big way. 

CA-125--not valuable as general screening test

There is an email making the circuit right now that advises women to ask/demand that as part of their yearly examination a CA-125 blood test be done.  The email suggests that this blood test will provide an early warning of ovarian cancer.  

I wish this were true--but from the information I can gather it appears that it is not the case.  

 According to the information received from the Ovarian Cancer National Alliance the test is important if you have had cancer or if cancer is highly suspected, but it is not valuable as a general screening test nor should it be the only test used to detect ovarian cancer.   

The following link is from Johns Hopkins Pathology

Click here

The signs of ovarian cancer can be vague:

bloating

abdominal pain

frequent urination

difficulty eating

That means that you need to pay attention and be alert to changes in how you feel.  Don't hesitate to go to your doctor with these vague symptoms because early detection will keep you alive. 

Kathy Bates, the Academy Award winning actress talks about her experience with ovarian cancer--it's interesting--and informative.

Click here to listen to Kathy Bates

Talk to your doctor if you think something is wrong.  Be persistent if you have to be.  You know your body.  

Gifts--A Primer

I love to get gifts and I love to give gifts that make people happy.  Simple? It should be, but in practice, gift-giving can be quite a complicated matter. 

• Why should you give a gift?
• When should you give a gift?  
• What type of gift is appropriate and/or fun to give?  
• How should you give the gift?   

And all of these considerations are even more complicated if the person who will be receiving the gift has cancer. 

This July, my daughter Jessica and I started a small business called Chemossentials.  Our tag line is, "Gifts and specialized kits to counteract the effects of cancer treatments."

While supporting friends and family members with cancer, we saw first-hand how traumatic and devastating this battle can be. We also experienced the frustration and challenge of effectively supporting loved ones throughout this journey. From our experiences we've come up with some suggestions and ideas to help you.

Here are some things to consider:

Why should you give a gift?

• to remind someone how important they are to you
• to acknowledge the difficulty of their situation and offer your support
• to encourage them to remain hopeful and optimistic
• to empower them with gifts that will be practical and useful throughout their treatments
• to know that you're making a positive difference in someones life.
  
  

When should you give a gift? 

• Right away! Waiting risks not doing.  
• Consider this, cancer treatment is a cumulative process--the need for specific products may not be predictable, so having them readily available early on is crucial.

What type of gift is appropriate and/or fun to give? 

• Useful and practical items that make life more managable. We suggest our Favorite Things Bag
• Items that specifically target the side-effects of cancer treatments. Check out our Face-Time Add On and Kick Back Kit
• Products that are fun and provide an outlet for distraction. Take a peek at our Stress Relief Add-On and Summer Zen Package.
• Personal touches, such as favorite magazines, self-care products, books etc.

How should you give the gift?

• Don't be shy, even if it is difficult for you to express your feelings with words, your gift can say it for you, "I care. I'm here to support you. I'm thinking of you." 
• Get together with a group of friends and/or family members and have each person contribute a special item - a book, a hat, a homemade goodie, a picture, an inspiring quotation, a funny story etc - to a gift bag. Adding this personal touch to any gift shows how much you care
• For more gift-giving ideas please see our gift giving guide

Having cancer can be isolating for so many reasons.  Don't let the ones you love feel alone.  Even when you aren't physically with them, these gifts can be a constant reminder that they are in your thoughts.  

We invite you to check out our website--we hope that you will find just the right gift--one that will  satisfy both sides of this equation.  

www.chemossentials.com

Thank you and to you and your loved one--we wish you well on your journey.

Maureen and Jessica

Attitude Matters

If you've never read anything written by Stephen Jay Gould you are in for a treat.  He was a brilliant thinker who wrote beautifully on an amazing array of topics.  

He was diagnosed in 1982 with peritoneal mesothelioma, a cancer affecting the abdominal lining.  People with this type of cancer are given this statistic--50% of you will die within 8 months of your diagnosis.  

Gould's article, The Median Isn't the Message, provides another way of looking at these numbers.  Statistical averages, while useful in presenting data, do not reveal the potentially large variations and wide array of possibilities among individuals.  Never underestimate the will to live.  Never deny that hope and joy can play a huge role in survival.  

Gould was an evolutionary biologist who taught at Harvard.  I tell you this because as much as I enjoy his writing, sometimes he is just too smart for me. Nonetheless the points he makes are quite clear: 

• When interpreting the data on a particular kind of cancer, keep in mind your age, your general health, stage at which the cancer was caught, family support system, general attitude about life.  
• And remember -- you are not a number!  You are far more complex - with a unique history and set of circumstances.  
• Having hope and keeping joy in your life will help.  

Click here for a more extensive summary of his article

Sadly, Stephen Jay Gould passed away in 2002 of adenocarcinoma of the lung. For Gould, his prognosis of 8 months to live became 20 years of life.

Try a Different Question

I just read an interesting booklet from the American Cancer Society called "Listen with Your Heart."  In it, the authors suggest that in addition to asking someone "How are you feeling?" you may want to ask them "What are you feeling?"

That question requires an entirely different level of commitment from both the person asking the question and the person providing the answer.  You are opening yourself up to hearing some personal, raw, emotional talk.  Be prepared--and forewarned.  This question will not elicit the polite conversation that makes up so much of our interactions.  

As the question- asker your job is to listen.  Listen to the complete answer.  Don't change the subject, try to mitigate the pain, or provide solutions.  Just take it all in.  Be supportive.  You can say something like, "Wow, you have a lot going on--is there anything that we can do together that will help?  Is there anything that I can do that would help you right now?"

If you are the one answering the question--go for it.  Sometimes just voicing your fears, complaints, disappointments or grudges can relieve some of your tension.  I'm not suggesting that you go on a rant.  But, being honest under these circumstances can certainly produce some harsh words.  This may be the time where you can finally express some of your darker thoughts and emotions.  And then, hopefully you can move on.  

Another interesting and important thing about this question is that it can help people who are dealing with a reoccurrence of cancer.  

We like to think of life events as having a beginning, a middle and an end.  For cancer it goes something like this--you receive the diagnosis, you go through the treatment, the cancer is under control and you are done.  While each stage can involve months and be overwhelming,  you are working toward the end point where the scans and blood work tell you that you are doing well.  You want to put it all behind you and be over with all things cancer.

Unfortunately that doesn't always happen.  Many types of cancer are becoming chronic or the treatment can go on for years.  That's when asking "What are you feeling?" can be most valuable.  

"Here she comes!"

Over the past few years I have lost too many loved ones; many to cancer but heart disease, stroke and aging have made their claims too.  At times it feels like I am either saying goodbye or steeling myself for the inevitable and total separation that is to surely come.  

Here is a poem that I discovered in "The Family Handbook of Hospice Care."  I read it often.  It calms me.  It contains, for me, just the right amount of sweetness and mystery.  

     THE END OF THE JOURNEY

I am standing upon the seashore.  A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. 

 She is an object of beauty and strength.

I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.  

Then someone at my  side says: "There, she is gone!"

'Gone where?"

Gone from my sight.  That is all.

Her diminished size is in me, not in her.  And just at that moment when someone at my side says: "There she is gone!" there are other eyes watching her coming, and other voices ready to take up the glad shout: "Here she comes!"

And that is dying.

        ---Henry Van Dyke

Suicide Gene--using diphtheria toxin gene to kill pancreatic cancer

My beloved friend, Carole died this August.  She had cancer of the pancreas. 

The physician she was working with offered a combination of chemotherapy drugs that were slightly different than what was routinely being offered.  Several of her patients were still alive--living an active and good quality of life-- after 2 and for some 3 years. We were all hopeful that Carole would experience the same results.  For a time it looked like she would.  The cancer in her liver appeared to be vanquished and the tumor in her pancreas had shrunk by half.  The scans came back with wonderful news and the cancer marker tests cheered us.  

Then everything changed and she died--just that quickly. 

The following article is one that I would have shared with Carole.  We would have talked about it, looked for more info on the research team, maybe even contacted the people involved.  

"Jefferson scientists deliver toxic genes to effectively kill pancreatic cancer cells" Link  to article 

 

Making Strides

The weather cooperated, the turn out was wonderful, the band was great (think Van Morrison), the energy level was high and I got assigned to the tent that had the donuts and coffee.  

Yesterday, Saturday, October 11, hundreds of Breast Cancer Survivors and the people who support them, walked in the "Making Strides Against Breast Calander--Twin Cities" event.  

This event is hosted by the American Cancer Society with the proceeds funding research and supporting patients and their families in a variety of ways.  

I helped out in the Survivor's Tent.  Breast Cancer Survivors were encourage to come to the tent and enjoy coffee, donuts, music and massage.  They were also encouraged to 

sign up for a drawing of great gifts donated by local businesses and generous individuals.  In addition to that, there were several delightful and useful free gifts available. 

 It's always fun to be the one who gets to give out freebees.  And it is fun to meet and greet all the wonderful people who participated it the walk.

The overwhelming feeling in the tent was one of gratitude.  Survivors were grateful to be alive.   

Family and friends were grateful to be sharing this day with them.

 Women who had 10 or more years of survivorship to celebrate, reflected on how the diagnosis and prognosis of breast cancer has changed.  They talked about how much more open society is to hearing about breast cancer and offering ways to help.  They marveled at how far science has come.  And every one of them said they couldn't have done it--the surgery, the chemo, the radiation, the reconstruction, the day-to-day struggles without the love and support of their family and friends.  

Here are some pictures of some of the people who enjoyed the day and helped to make it so special.  I hope that I have the names right.  And thank you for letting me use your pictures!

Volunteers Penny and Megan

Emma with her Mom, Dad and Blake (her dog). They covered a lot of ground as they cheered on walkers!

The Finish Line

Dancing to the wonderful music and celebrating a terrific day!

Linda and Amanda working in the Survivors' Tent

What's So Funny About Cancer?

Really there is nothing funny about cancer.

Having cancer is a daily challenge--but that's why people are able to find the humor in some of the situations and events that intrude upon their lives. Humor can be a defense mechanism and it can also be a power grab.  If you can laugh at it, you control at least a small part of it.  And that helps.

For example, I just saw the most amazing T-shirt--it stopped me in my tracks.  It said,

           "Sure they're fake.  But my real ones tried to kill me!"

I couldn't help but gasp and then burst out laughing.  What unexpected, gallows- humor.  And perhaps a release for the marvelous woman wearing the T-shirt.  She certainly didn't seem like a "victim" to me.

Miriam Engelberg's wonderfully and sometimes, darkly funny book, "Cancer Made Me a Shallower Person:  A Memoir in Comics" presents a side of living with cancer that most books gloss over.  

Here a two examples of topics covered in an autobiographical, comic book style format.  In talking about how personal it is to tell people that she had breast cancer she related through cartoons and words that people stared at her chest trying to figure out which breast was  causing the problems.  She thought about marketing shirts with an arrow pointing at the guilty breast saying, "Cancer Inside."

My favorite vignette involves someone trying to be philosophical about cancer, life and death by telling her that we are all going to die.   After all , any of us could get hit by a bus. Engelberg wonders why it is always a bus? Is there some mad rouge bus out there waiting for all of us?  Ironically 15 years before her diagnosis, she really was hit by a bus and lived to tell about it.  Her cancer was another story.  Given the choice she would rather get hit by a bus again.

As cancer becomes more of a chronic condition it is appropriate that more outlets for expressing humor are developed.  

If any of you know of unique, classy and/or humorous ways this topic is explored please let me know.

Breast Cancer Awareness--Vaccines in the Future

October is Breast Cancer Awareness Month--make it a point to attend and support the upcoming events and fundraisers.  Last week I attended the Denim and Diamonds Gala for the Hope Chest.  This weekend I will be working at the Strides for Life event put on by ACS. The most inspiring and hopeful part of each event is meeting and talking to the people who have experienced breast cancer and are doing well today.  

The progress made in early detection and in treatment of breast cancer have been remarkable but there is still much to do in order to find the necessary cures.  

October is a good time to think about how far we have come in treating breast cancer and where we are going next.  One of the most exciting places that we might be going next is the development of vaccine.  

Here are two articles that may provide you with some information on where research is headed--or should be headed. 

www.guardian.co.uk/society/2008/oct/06/health.cancer/print

Valerie Beral of Oxford University, the epidemiologist leading this study suggests that 

"Genes played a part in only a very small number of cancers.  The processes of giving birth and breastfeeding protected a woman from breast cancer more than anything else."  

Dr. Beral believes that the hormone prolactin should be studied.  "The one hormone that has to do with breast changes doesn't appear until late pregnancy.  It produces the changes in the breast that make for lactation."  

The second article is about a new form of immunotherapy.

www.washingtonpost.com/wp-dyn/content/article/2008/04/13/AR2008041301616.html

The vaccine under development and investigation in this study is aimed at reducing the risk of recurrence for "patients who have a high expression of the protein HER2-neu."

"This type of breast cancer, representing about one-quarter of all cases, tends to be deadlier than other forms of the disease.  In this group, the vaccine reduced mortality by 50 percent."

The idea of a vaccine that can help prevent breast cancer is exciting and to my mind, absolutely the right way to go.  Prevention is the key.

Cancer Support Groups--What's in it for you?

Recently I have been thinking about the role of support groups.  Many of my friends diagnosed with cancer, have chosen not to seek out the company of others in their situation.  I imagine that they have a variety of reasons--but I wonder if they are missing out on an amazing experience.  

I wanted to know what type of impact participating in a support group could have on your life and your experience of living with cancer.  I took my questions to my friend Mary Ann.  From past conversations I knew how much she valued the relationships she established with the individuals in her support group.  She was gracious enough to let me interview her about the role her support group played, and continues to play, in her life. 

The first thing to know about support groups is that they rigorously protect their members' privacy.  Everything that Mary Ann shared with me was presented with the clear understanding that no identifying information could or should be used.  

Here are some excerpts from a number of support group conversations:

"Welcome to the club!  Not the place any of us wanted to be...but here we are.  Please let us know how things went as soon as you are able, we'll be watching for your message."

"Just because an insurance company denies something, if you have the energy it is always good to call them directly and ask to speak to a manager or supervisor and ask why it was denied.  Perhaps it was just an unwritten rule that they have.  But in my case, it did work."

"Hi, I don't know if this will get back to you before your surgery, but please know that you will be in my meditations to send healing energy your way."

"I know how overwhelming all this can be to you but I want  to add one more thing for you to consider! :)  If your surgeon talks about doing an axillary dissection you might want to find someone who will just remove and check the sentinal nodes first.  The chances of getting lymphedema are greatly reduced (although some women still get it).  I think most surgeons are now doing sentinel node biopsies, but it's still a fairly new technique, only a few years old I think."

I quickly came to see why Mary Ann felt that her support group was a wonderful and powerful resource.

Joining an on-line support group has several advantages.  Not having to worry about how you look was the first thing that came to my mind.  Bad hair day, or no hair day, all your clothes are dirty--no matter, just get on- line and type.  

At the start of treatment it's normal to be exhausted and overwhelmed by all changes in your life.  You may be in physical pain and you are certainly in emotional turmoil.  The thought of getting ready to go to one more appointment can be unthinkable.  Staying home and still being able to have access to others in your situation can conserve much needed emotional and physical energy.  

Nights can be long, bringing dark thoughts -- that's when reaching out, via the internet can be therapeutic.  If you want to "talk" at 3:00 AM you can.

Someone else may also be available at the same time, but maybe not.  You can leave your message and check back later to find a thoughtful response.  

Being honest and frank over the internet is easier for some people than meeting face to face.  When you are physically with a group of people you feel compelled to behave in a certain way. It isn't acceptable to fall to pieces in public--even if that is the only logical reaction to all the horrendous things that have been happening.  You may even deny or bury emotions in order to keep yourself "together" in front of others.   

Over the internet you are freer to say, "I'm coming undone.  I can't do this, I'm not strong enough.  I hate that this is happening to me and my family." You can say uncomplimentary things about your spouse or children.  You don't have to be embarrassed about tears or a runny nose.  

And it's good for the other people in the group too--they aren't distracted or put off by your tone or your anger.  They can focus on your words.  They can take the time to collect their own thoughts and compose their own words to help you.  

It's amazing how close you can get to others when you are distant in physical location.

Joining an on-line support group provides a lot of freedom, but that doesn't mean that there aren't rules of conduct. For one thing, as a member you need to live up to the name--you need to provide support.  Mary Anne told me that her group "... is always on her side."   She can count on that fact and it is a huge comfort.  Members of a support group treat each other with great sensitivity and respect.  Group members are dedicated to maintaining a non-judgmental enviroment.  

Some women decide to remain active in their group long after their treatment has ended.  They serve as the voice of experience, welcoming new members and reassuring them that they will get through the treatment.

Helping others is a powerful and direct way of continuing to help yourself heal and grow.  Guiding someone through the tangle of integrating cancer into their life without letting it take over their life is a wonderful gift--for both of you.   Helping someone find a balance is a great way to maintain yours. 

Remaining in a support group also provides an unofficial type of "after care." Many people discover that instead of being relieved and carefree, after cancer treatments are over, they are anxious and fearful.  In fact, doctors and survivors alike, are reporting symptoms of post traumatic stress syndrome.  Life never completely goes back to what was once "normal."  

While you were in treatment you were constantly monitored by doctors, nurses and  other health professionals.  Regularly scheduled  tests, scans and blood work told you how you were doing.  Life was arranged around your treatment schedule.  Then, suddenly, it seems, your treatment is finished.   The day that you thought would never come did arrive and you may be shocked to find that in place of joy and relief, your are experiencing sadness. 

You may feel abandoned and vulnerable.  "After treatment letdown" is a common subject among group members.  It's soothing to talk with others women who experience the same conflicting emotions.  Knowing that others went through this same conflict is reassuring--you aren't crazy.  Your support group members will tell you that what you are feeling is all part of the process.  

Finding your "new normal" takes some time.  Continuing to have the support and comfort of your group can be a lifeline.   

How do you find a support group?  

I asked several people how they located their support group--here's what they said:

*  ask members of your health care team for suggestions

*  ask hospital social workers for referrals

*  family member or friends may know someone you can talk with

   

*  religious groups may be able to provide information

*  ask people you meet in waiting rooms, labs, infusion centers if they 

  use support groups and how they found them

*  when searching the internet for information on your type of cancer, 

   see if any support groups are mentioned

*  ask your computer-savvy children to help you locate a few on-line 

   support groups.  

You may not find a group that works for you or you may find that you don't work well in a group.  But during the search process you are likely to learn some important things about yourself and how you want to manage your cancer.  Joining a support group can be one of the best things that you do for yourself.

"I so wish I had found this group earlier, you women are incredible!  Not only the support but the level of knowledge is unbelievable.  I am getting so much information that I wish that I had before...Thanks to you all I have a list of questions to bring to my oncologist.  I am in awe of all of you."

                      --support group member

Thanks to Mary Ann and her support group for sharing their posts.  

A Family Affair

In July, I wrote a story about my daughter Lauren donating her hair to "Beautiful Lengths." (Check out "Putting Our Heads Together" July 29, 2008.) In the story I credited Hannah, my niece with giving us the idea to make the donation.  Recently I asked Hannah to write to my blog and share her story--and here is Hannah's wonderful story.  

(And --thanks Hannah for the compliment on the website.  I will pass the kind words on to your cousin Jessica--the Chemossentials Webmaster.  It really is a family affair.)

  

I wanted to donate my hair because I had a lot of thick red hair and I wanted to give it to a charity so that someone else could enjoy my hair who needed it.  

After I donated my hair I was really happy that I gave it to charity.   It felt like I gave someone something they had wanted for almost their entire life.  

During the process I felt squirmy because I could barely remember the last time my hair was that short. I knew that I would not feel so hot in the summer and someone else would have something they had wanted really bad, like Christmas all over again.

After I donated my hair my friends thought really hard about if they wanted to do it too or not.  I told them about how I felt and if they did it they would feel the same way.  4 of my friends thought it was a great idea so they did it too.

Hannah

P.S. I also really like your website.  I like how you made it.  

How to Help Organize Medical Appointments

It is essential for someone going through cancer treatments to have a family member or friend accompany them on each visit.  Here's some practical advice on how to faciliate information gathering and organizing for office visits, chemotherapy sessions and radiation appointments.  

Before volunteering to help ask yourself:

• Do I have the time available to make this ongoing commitment?
• Can I be helpful or am I too emotionally involved?
• My friend or relative has an absolute right to privacy--can I be discreet and respectful?
• Can I be an assertive advocate?
• Can I be counted on to be on time for appointments, especially if I offer to drive?

Define your role:

• In addition to taking notes regarding the important information covered during the appointment, is it alright for you to raise questions or ask for clarifications of things that you don't understand?  
• Will you be in charge of organizing the notebook--putting lab reports etc into  the appropriate spot, keeping track of prescriptions, all receipts?
• Will you be in charge of the parking ramp ticket? 
• Will you help make appointments?

Basic supplies:

• Notebook--a 2-3 inch three ring binder 
• Pockets or folders that fit into the binder to hold lab reports  and scans
• Business card holder-- a page that holds 10-12 cards is usually adequate
• Bring 2-3 pens and highlighters 
• Post-it Notes
• An attractive and functional bag to carry all of this--think about a Chemossentials Bag

What to bring to each appointment:

• Insurance cards--I suggest that you make at least 5 photocopies of all insurance cards--some medical facilities are very well integrated, others aren't, so having this information available is convenient.  I've also found that handing over a photocopy eliminates the possibility that you will lose track of your important cards.
• List of all medications--include dosage, MD prescribing, pharmacy phone numbers and why you are taking the drug--have 5 copies of this information too.
• List of all vitamins and supplements you are taking.
• List of all allergies to medications.
• List of past surgeries and hospitalizations.
• List relatives who have had cancer, include type of cancer and age of onset 
• List of important phone numbers--doctors, dentists, neighbors, children's schools--any one you might need to contact.
• Snacks and drinks
• Cell phone and portable charger
• A sweater--medical centers are typically cold.  

Making the appointment:

• It is likely that the first appointment was already scheduled, when making future appointments try to schedule them in person before you leave.
• Schedule lab appointments and other tests and scans the same way.
• If you  are seeking a SECOND OPINION --and you really should to that--ask your doctor's office for help in setting up the appointment--the same holds true for appointments with other specialists.

The day before the appointment:

• Call your friend and confirm the time and location.
• Be sure you have the directions, know where to park and how much it is likely to cost.
• Review your role.
• Help your friend make a list of questions, concerns, clarifications that need to be addressed.  Talk about asking for a second opinion--this is a touchy topic for many people and this may be place where you can take over and ease the burden.
• Bring some things that can distract you both while you wait.

During the appointment:

• Record information in the notebook, put all lab reports, test results and scans into notebook
• Collect business cards of MDs, nurses, business and clinic managers etc and organize in notebook
• Ask about how to get help after hours--who to call and when to go to urgent care or the emergency room
• Ask if there is a nurse manage or someone to call with any and all questions

Follow-up:

• Set up next appointment
• Schedule tests and labs
• Get prescriptions filled 
• Use system to save receipts and drug information inserts

You will likely decide that there are other things that you need to and can do to help organize a medial appointment.  The information you record and organize will be used to make vital treatment decisions. Setting up a system that is easy for your family member or friend to access, understand and review is crucial.  

Here's another thing to consider-- being there during this time can also be a wonderful way to get closer to your friend or family member. Be creative and insert as much fun and joy into the process as you can.   Don't overlook this unique opportunity.  

Finding the Balance

When I was in grade school I was thrilled to belong to the "We Never Guess We Look It Up Club" so it was only logical that much later in my life I would get a MA in Library Science.  I've always liked having a question to investigate.  

It's a skill and passion that I've brought along with me as I've accompanied family and friends through cancer treatments.  I'm your factotum when it comes to finding out what the medical professionals and people who have gone through cancer treatments have to say about mouth sores, nausea, Traceva rashes, cuticle and nail issues, constipation, diarrhea, night terrors, diet, hypnosis, aromatherapy, acupuncture  as well as a host of  other issues.  It feels wonderful to put my research skills to use. 

But I sometimes think it is also a very sneaky way of being emotionally remote.  I have to watch that.  

I think that we all try to protect ourselves a little bit when someone we love has cancer. I do that by being in constant motion.  Always doing.  Lots of times the information that I come up with is helpful.  It does serve a purpose. Sometimes, however, I think that I am so busy doing that I miss opportunities to just be a friend.  

I need to remind myself to slow down a bit.  To listen more and talk less.  I should stop viewing every statement that my friend makes as being a research assignment.  

People need to say things out loud to help themselves accept those statements as the truth.  Often reality comes to us in bits and pieces.  As I read in a pamphlet on coping with bad news, "Sadness needs its own time to be."  

I need to learn how to just be so that I can accompany my friends as they go through the process of absorbing  the new reality of what is happening in their lives.  That doesn't mean that I will stop trying to find ways to keep them from enduring the awful side-effects of treatment.  My quests for answers and alternatives will continue. What I am going to try to do differently is to be more open to emotions and less afraid of where that will take us. 

Walking and Talking

My neighbor Gloria and I try to walk in the early mornings a few times a week. It's wonderful to get out of the house, walk around a lake or two, see the herons, eagles, and other walkers and runners with their dogs.

While starting up Chemossentials I bounced a lot of ideas off of Gloria during these walks. She is a clear thinker and a very creative individual. She has also experienced breast cancer so she offers a valuable perspective.

During our walks over the last few weeks I've hogged the conversation with my issues. I have four dear friends who are experiencing cancer treatments. They are fighting lung, bladder, pancreatic and breast cancer. Gloria has been a wonderful listener and a good friend, but really it was time for me to change the topic. I decided to try to be a more upbeat walking companion. No more talking about cancer--listening more, talking less--enjoying the beautiful morning --all of these things were my goals for our next walk.

We had a good walk and a good talk that day. As we were nearing home we came up behind a woman walking a Basenji. I love that breed--they are from Africa, are said to be able to climb trees and they yodel instead of bark--what's not to love? I caught the owner's eye and expressed my admiration for her dog. Her face crumbed. She took a deep breath and told us that her dog had cancer and this was the last walk that they would share.

Wow, I did not see that one coming. What are the chances of us meeting someone with a story like that?

I've been thinking about why we met up with that woman and her wonderful Besenji. All I have come up with is that Gloria and I are both dog -lovers and we have both, in our own ways, dealt with cancer. I hope that we were able to say something to her that was helpful. I hope that she could feel how sorry we were. I hope that we helped.

I keep thinking about her and her dog ---I hope that they are both peaceful.

Putting Our Heads Together

After receiving a cancer diagnosis it's reported that one of the first questions women ask is, "Will I lose my hair?" Being bald is a huge blow to your self-esteem. It can be the first and most visible sign that you have cancer.

Vickie Girard, author of "There's No Place Like Hope" wrote, "When I lost my hair, my eyelashes, my eyebrows, I felt as if I were being erased...Hair loss allows our illness to enter the room before our name."

Depending on the type of chemo drug being used, hair loss often happens sometime after the second treatment. Women are advised to be proactive and cut their hair before it can fall out clump by clump. That's what many of my friends have done--and they say it was sad, cathartic and liberating all at the same time.

For many women getting a great wig is a must. Again, lots of advice is offered about when and where to get a wig. Thankfully many affordable and wonderful looking wigs are available. Nonetheless, the insecurities and sadness that result from hair loss can be considerable.

After experiencing and processing the initial shock and sadness, my friends have been very "matter of fact" about this situation. They go on with their lives telling themselves and others that hair loss is an indication that the chemo is working.

I have always marveled at their resilience. I wanted to do something tangible to support my friends. I decided to grow my hair long enough to donate to an organization that makes wigs for individuals going through cancer treatments. In fact, I wanted to follow in the foot steps of my 10 year old niece, Hannah. Last winter she donated about 14 inches of her thick, fabulous red hair. Imitating her good example felt right, so it was a shock when I discovered that the amount of gray in my hair (and here I should say that no one, not even me, really knows exactly how gray I am because I have my hair artfully colored) made me a less than desirable donor. Ouch.

I quickly came up with another plan. When in trouble turn to family. My younger daughter, Lauren, has beautiful, straight, shiny hair-she could make the donation.

Here's what you need to know about Lauren--she also lives with a diagnosis--pervasive developmental delay. She is 23 years old and functions at the level of a 2-3 year old. Don't feel sorry for her or for us. She is one of the most wonderful individuals that you will ever meet. She is funny, stubborn and very, very social. Virginia Woolf could have been thinking of Lauren when she advised, "Arrange whatever pieces come your way." Lauren has done just that. And along the way she has helped us learn how to manage some of the more difficult "pieces" that life has thrown at us.

When Lauren was a baby we felt like all we could do was react to the reports the doctors gave us. We felt powerless. That must sound all too familiar to anyone who has gone thorough cancer treatments.

Lauren had her own way of reacting to her prognosis, she just keep on living her life, having fun and being her goofy little self. The rest of us took note and decided that all we really needed to do was support Lauren and be happy as a family.

We also learned that Lauren has a lot to contribute to any situation--and in this situation it was going to be her beautiful hair. So we did some research and found -- Pantene Beautiful Lengths --a non-profit organization that uses donated hair to create real-hair wigs that are given free-of-charge to women going through cancer treatments.

We want you to know about Pantene Beautiful Lengths. Check it out at http://www.beautifullengths.com/

So now, somewhere, a woman is sporting a shiny black wig that contains some of Lauren's hair. Another woman, a red head this time, is feeling good about herself because of Hannah.


Here are some pictures of Lauren getting her hair cut. Cindy --our wonderful stylist--was excited to be a part of this process. Cindy has had several clients who have had cancer and lost their hair. Helping Lauren make this contribution was a project that was near and dear to her heart. It was an emotional moment to watch Cindy put Lauren's hair in a ponytail and cut off the required 8 inches. Other stylists from the Hair District came to watch and offer praise and encouragement to both Lauren and Cindy.
















A few weeks after mailing the ponytail to Pantene we received a really lovely acknowledgement--here is a copy of the letter that they sent to Lauren.

Think about joining in and contibuting to the Pantene Million Inch Chain.

Denim and Diamonds

The Hope Chest of St. Paul is hosting their 6th annual Denim and Diamonds Gala event on October 2nd, in support of breast cancer research.

Chemossentials will be donating a bag containing specially selected products for their silent auction event.

Hope to see you there!

For more information please visit: http://www.hopechest.us/currentEvents/DD2008WebPage.htm

- Maureen and Jessica

Relay for Life Burnsville

Relay for Life Burnsville, August 1st and 2nd 2008.

Burnsville's Relay for Life was the first event of this type that I've attended. It was a modest event--maybe only 200 people. That was a shame because the quality of the speakers was excellent. Burnsville's mayor, Elizabeth Kautz along with State Representative Will Morgan and U of M cancer researcher Dr. Rober Secik covered topics that were thought provoking, inspiring and funny. Jill Holly, singer, song writer, performer and breast cancer survivor introduced the speakers and set a wonderful tone for the evening. The original poem that she read to start off the evening was perfect. I hope that she publishes it soon so that it can appear in blogs like mine.

Each speaker encouraged participants to have fun as they completed the laps throughout the night. There was food, music and an auction going on so there were plenty of opportunities for enjoying yourself. But there was also a nice balance of reality. Two parts of the evening reminded all of us of why we were there--the Survivors Lap and the lighting of the luminarias.
The Survivors' Lap was a powerful way to show that together we can fund the brilliant minds that will find a cure for breast cancer. It showed us that there is always reason to hope. Watching each person make that lap and knowing that in their not too distant past they were undergoing cancer treatments was sobering to me. I thought about how much each one of those lives had changed as a result of their cancer diagnosis and how happy and triumphant they looked walking together that night.

Lighting the luminarias that lined the track was a beautiful way of remembering and honoring the people who have died--they are why we are so determined to find a cure.
Looking at the bags decorated in a variety of ways, all with the name of someone sorely missed was a sweet and very sad experience.

I wish that more people from the Burnsville community had been there--unfortunately until there is a cure--there's always next year.

Just listen

It's devastating to hear that someone you care for has cancer.

Telling your family and friends that you have cancer has to be excruciating.

In October, a dear friend, someone I have known for over 30 years, sent an email telling me that she had just been diagnosed with cancer. The email went to three of us, women who had been dining together monthly for the past 20 years. We were all caught by surprise. Within minutes of receiving the email the three of us were on the phone talking and crying with each other.

Emails are often considered impersonal and imperfect methods of communication. In many cases this is true, but for us receiving this dreadful news via email was a gift. We had time to let the news sink in. It was alright to focus on ourselves first. And we need to do that. We could cry, be angry, engage in denial and swear a blue streak--all in the privacy of our own homes. We could do all of these things without pulling our friend into our despair. I think this is what the fight attendant is talking about when she or he says, "In the event of an emergency, oxygen masks will drop down. Secure your own mask before assisting others." The reasoning behind this is sound; you really aren't in a strong position to help any one else until you take care of yourself.

Our friend allowed us to take care of ourselves. She knew that we would be shattered by her diagnosis. Her email covered all the points we needed to know. The information was right there in black and white for us to read, review, print out and share. She told us about the treatment plans that were available to her and what wasn't and why. She talked about the physician she was working with and even attached a newspaper article about the doctor and her unique practice. She provide the facts, told us how she was handling the situation, gave us an idea of what we could do to help and let us know how important we were to her.

The four of us were scheduled to meet for dinner a few days after we received the email. We decided that we needed to take dinner to her house--none of us could imagine going to a restaurant.

It turned out to be a good evening. The credit, of course, goes to our friend. The way she delivered the news of her diagnosis set a tone that we followed. At dinner that night we were still profoundly sad and deeply worried, but I like to think that we were able to focus on her needs.

It is difficult and painful to hear that someone you love has cancer--but in order to be able to comfort and help, you have to listen to whatever it is that they want to say. All that you need to do at that moment is listen. Let them talk. Don't be afraid of silence. You don't have to provide stories of relatives who faced the same thing, you don't have to list doctors or clinics and you don't have to know every detail of their diagnosis. Just be there.