Transitioning from Cancer Patient to Cancer Survivor

Kelly from Missouri wrote and told me her devoted husband is worried sick over the fact that she has not bounced back yet from breast cancer treatment.  He has flashbacks because Kelly’s dad had a cancer diagnosis, then sat around the house for two years, then died.  Kelly’s husband is concerned Kelly will have the same fate.

Kelly and I were discussing that even though she has completed active treatment, she still feels very much like a Cancer Patient.  She does not feel like a Cancer Survivor.  When I reviewed Kelly’s journey over the past 10 months, it is understandable that she has not been able to make that transition from Patient to Survivor.  I think you will agree with me.

In 10 months Kelly has endured a triple lumpectomy then a bilateral mastectomy because she had cancer in both breasts and each was a different type.  Kelly then had separate surgery to remove more lymph nodes.  Three weeks later Kelly started 4 months of dose dense chemo followed by 33 radiation treatments.  In the midst of this, Kelly found out she had the BRCA/2 gene mutation.  She finished Radiation on January 2, 2013 after having severe burns that caused her horrific pain and discomfort.  Radiation had to be halted then restarted.  And at the end of treatment, Kelly had a Hysterectomy on January 11, 2013, also related to breast cancer!!   In between all of that there was port placement, port removal, tests, tests and more tests, scans, scans and more scans, and medications galore.  Is it any wonder Kelly does not feel like some amazing Cancer Survivor?

It is frequently said that the two most difficult days in a Cancer Patient’s journey is the day they are diagnosed and the day active treatment ends.  Once you are finished with active treatment and are declared cancer free, the world looks upon you as suddenly you are all better again and are now some marvelous, heroic survivor.

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Please check out my online shopping store at www.hellocourage.com   or click on the sign below – I had these custom Subway Signs made with words that were important to me to make the transition.

Survivor Sign Black

 

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When you go from Normal Person to Cancer Patient, it is forced upon you.  Most of your choices are made for you, and you become a puppet for the medical teams that treat you.   However, when you go from Cancer Patient to Cancer Survivor, suddenly you are thrust back into the world from the cancer bubble, like a bird thrown out of the nest.   Once you get thrown out of that nest, I have found that so much of the journey has just begun.  I shared that with Kelly and her husband.

Here is what isn’t over when you finish that last treatment:

1)  Fatigue and exhaustion from a year or more of treatment.  I was cautioned by my Oncologist that it can take one to two years to get through this part of the process.  Blood counts are still recovering and so is every part of your body.  It takes time.

2)  Chemo Brain – this is really overwhelming and very frightening.  In my case, I’ve always had a good memory and very good cognitive abilities.  Suddenly, those were gone.  That absolutely terrified me, so I started a rigorous training schedule for my brain.  I am happy to report after six months, I have improved dramatically.  I am now able to carry on a conversation without constantly searching for words and no longer do I get lost while driving in familiar areas.

3)  Side effects from ongoing medications – The majority of breast cancer patients take either Tamoxifen or an Aromatase Inhibitor like Arimidex.   These can cause severe side effects.  I have severe hot flashes and night sweats which wake me up a minimum of four (4) times per night.  And the joint pain is horrible.  However, I have it easy compared to a lot of women.  These drugs will be part of your life for 5 to 10 years, so it is necessary no matter what the side effects, you make the most of it!  And that is difficult.

4)  Lymphedema – If you had lymph nodes removed during surgery and suffer from Lymphedema, you know the many long-term effects of this condition and how it is something you have to deal with on a daily basis.  Because I recently picked up a heavy item without thinking (a heavy bag of groceries), I had a huge flare up of Lymphedema which requires much attention and treatment.

5)  Medical bills – the reality of the expense of cancer can be overwhelming.  I have received letters from so many who have unbelievable deductibles and co-pays or no insurance at all.  This can quickly add up to thousands and thousands of dollars or with no insurance, hundreds of thousands of dollars.  The stress for these women and their families is incredible.

6)  Relationships – Also, I receive numerous letters from women who have realized their marriages or relationships with their significant other are in bad shape after the stress of cancer.  Some women have actually become victims of domestic violence while going through cancer!  Some are now dealing with separations, divorce, lawyers and the court system.   They are not only worried their children won’t have a mom to raise them because of cancer, they are dealing with the break-up of their marriage.

6)  Earning a Living – perhaps you have had to quit working during cancer treatment or find that your old job no longer is a match for the new, post-cancer you.    Certainly, that brings its own unique set of challenges.

7)  Fear of Recurrence – Learning to live with this is probably the most challenging thing.  Ask any cancer survivor.

But here is the encouragement.  At the 6 month mark of finishing active treatment, I began to notice a major shift  in how I was feeling.  I began to feel a little more like a survivor and less and less like a patient.  Going from daily or weekly medical appointments to monthly or every 3 months drastically contributes to that fact!  Just being away from medical facilities is healing!

I’ve written before about the dangers of depression after active cancer treatment is over.  Be on the lookout for this and do something about it before it becomes debilitating.  When treatment ends is when depression often sets in.

The best wisdom I can impart is give yourself time and lots of it.  No longer can you say yes to every committee that comes your way, every social event that you are invited to, or every cry for help that comes along.

I do observe that some Cancer Survivors feel they have to really live life to the fullest and be busy every second, because they do not know how long they have to live.  This could prove dangerous over the long haul, I believe, as it may be causing too much stress to an already overtaxed system.  Balance is the key.

It is time to refocus, rebuild, and renew.  Now is the time to see a counselor to help you focus on new goals, new dreams, and new hopes.  Do not be too hard on yourself.

And to Kelly and her husband…give it time. You have both been through a war.   The healing will be slow and steady.  Try to enjoy the process.

The Importance of Breast Self Examination

Forty (40%) percent of all women diagnosed with Breast Cancer found the lump which led to a breast cancer diagnosis.  It is imperative you do self-examinations on your breasts on a monthly basis in addition to regular mammograms.

Before breast cancer, I was absolutely diligent in doing breast examinations in the shower at least once per month.  When I found “the lump” that got me  to the doctor, I learned that the large tumor was underneath and not the lump that suddenly appeared.   I was unable to feel the breast cancer tumor in my breast because it was close to the chest wall, directly underneath the nipple, and I was a DD cup size. I was not pushing hard enough on my breast or doing examinations lying down in addition to upright examinations.

Just about a week before I found the “save my life lump”, I noticed my nipple inverted and my breast skin was having some minor dimpling.  I did know that these were possible indicators of Breast Cancer.   Because I noticed this, I was really paying attention to my breast.  And thank God I found that lump when I did.  I could have been Stage 4 instead of Stage 3 had it gone undetected for even a few more months.

Not only are you looking for lumps, but signs of Inflammatory Breast Cancer which most often does not form a lump.  According to the Mayo Clinic, here are some of the symptoms of Inflammatory Breast Cancer:

Signs and symptoms of inflammatory breast cancer include:

  • Rapid change in the appearance of one breast, over the course of several weeks
  • Thickness, heaviness or visible enlargement of one breast
  • Discoloration, giving the breast a red, purple, pink or bruised appearance
  • Unusual warmth of the affected breast
  • Dimpling or ridges on the skin of the affected breast, similar to an orange peel
  • Tenderness, pain or aching
  • Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
  • Flattening or turning inward of the nipple

Here is a 5 Step Explanation with Diagrams to teach you how to do a proper breast self-examination.  I also recommend you ask your doctor to teach you how to do these simple procedures which could save your life.   Mark your calendar to remind you to do your monthly self-examination.

http://www.breastcancer.org/pictures/self_exam/step_1

Chemotherapy and Flashbacks

I am in the middle of a one-year cancerversary from going through Chemotherapy which for me was Adriamycin Cytoxan and Taxol over a 5 month period.    Just writing about this makes me feel nauseated.  So I had to look up “Chemo Flashbacks”.    Many people suffer from Chemo flashbacks.  I am not alone!

I had pancakes at a restaurant a few days ago.  It popped into my brain that I had not had pancakes since going through Chemo.  Pancakes were one of the foods I could eat in the beginning of Chemo.  Just eating that pancake made me sick.  I had to stop.   I still cannot look at juice bars as I ate so many juice bars to stay hydrated.  I have to hurry past them in the grocery store.    I lived on cottage cheese to keep my protein levels up.  No way can I eat cottage cheese now.   I paid attention to the warnings people gave me about being careful not to eat your favorite foods on Chemo as you won’t like them when you are done.  There certainly is truth to that statement!

One of my Chemo Nurses told me about a favorite patient she had in the days when anti-nausea meds were almost non-existent.  She ran into him at a local mall and was thrilled to see him thriving after his near death.   He was overjoyed to see her as well, but took one look at her and immediately vomited in the middle of the mall.  His body just spontaneously reacted 10 years later!

My former brother-in-law is a 35 year cancer survivor.  The medical staff gave him Watermelon Jolly Ranchers to help the nausea.  To this day, he will throw up if he even sees that hard candy.

The Journal of Clinical Oncology did a study of over 600 cancer patients that received chemotherapy.  Over one-third of the former cancer patients had flashbacks and other symptoms of Post Traumatic Stress Disorder.

Megan, a volunteer with SHARE, wrote about her Chemotherapy Flashbacks years after she finished Chemo:

For me, specific odors, flavors, songs, books and movies recall in a flash my experience of breast cancer:

  • Whether I’m cleaning my computer keyboard or removing the gummy residue of a price tag, the smell of rubbing alcohol conjures up the chill of my port being swabbed for an infusion, and I feel again the fear of the poisons about to be poured into my veins.
  • There’s a wonderful peanut-butter-and-chicken soup in Jane Brody’s “Good Food Cookbook.” I used to love it. Now not so much. My husband used to make it for me after chemotherapy to stimulate my appetite and make sure I got enough fluids. Now the taste of it calls to mind mouth sores and the dreadful, deep lethargy of post-chemo malaise.
  • Daniel Powter’s song “Bad Day” seemed to be on the air 24/7 the year I was chemo bald. Most people I know hated the song, but I liked it. “You had a bad day” — simple words, but they hit the nail on the head for me. I was having a bad day every day. Once in a while, I hear the refrain again and remember the misery of seeing my pasty face and hairless scalp in the mirror, the effort it took to face the world exposed like that, the comfort of singing under my breath, “You had a bad day/ You’re taking one down/ You sing a sad song just to turn it around …”

If you are a former Chemo patient, please post and let us know if you have had these flashbacks.

Protecting Your Heart during and after Breast Cancer

My Oncologist forced me to see a Cardiologist when he discovered Adriamycin Cytoxan (Doxorubicin) Chemotherapy and Herceptin damaged my heart.  I am so thankful he did because I have learned so much that could have gone unnoticed.

A group of Cardiologists at the University of Michigan said Nuclear Stress Tests results showed that  I suffered heart attack during Chemo and Herceptin.    I did have heart attack symptoms like arm pain, chest pain, and breathing difficulties, but thought they were chemo symptoms because chemo will cause these symptoms as well.

There are many new studies out in 2012-13 on the dangers of Chemo and/or Herceptin and severe heart damage.   These studies warn cancer survivors to look for heart problems for up to 5 or more years after you are finished with the drugs.     In most people Adriamycin Cytoxan AC Chemo (Doxorubicin) increases cholesterol, while it is more rare during Taxol.  M D Anderson, the top cancer hospital in the USA, just released some findings on why this Chemo drug causes heart failure:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Before Chemotherapy, the protocol is to have a MUGA scan or ECHO cardiogram of the heart.  Then your Oncologist monitors it every 3 months until treatment ends to make sure your Ejection Fraction (EF) does not go dangerously low.  Mine went dangerously low – it fell from 65 to 39 and has remained at 39.   This Cleveland Clinic website gives great information about EF, what is normal and what isn’t:    http://my.clevelandclinic.org/heart/disorders/heartfailure/ejectionfraction.aspx

If you are  prescribed anti-hormonal drugs such as Arimidex or other Aromatase Inhibitors  post treatment, these drugs can also raise your cholesterol.  Tamoxifen can raise or lower cholesterol depending on the person.   Normally, your Oncologist is not interested in your cholesterol levels, but your estrogen levels while on these medications.   Thankfully, my Cardiologist stays on top of this.

Chemotherapy raised my cholesterol.   It raised 36 points after Chemo even though it was normal previous to Chemo.  My Oncologist immediately placed me on a low dosage of Lipitor.  Within 2 months, my cholesterol dropped from 225 to 154 and LDL from 150 to 61.

Oncologists do not check your heart after Chemo is over.  Their job is to keep the cancer away, not be concerned about your heart.  Your General Practitioner may not be aware of the heart dangers after Chemo and Herceptin.   But you need to be concerned about your heart and take actions to protect it no matter what your age.

My recommendations:

1)   Ask your General Practitioner to monitor your heart closely after Chemo is finished.  If they are not already aware, educate them or ask them to research Chemo drugs and the heart.  Ask them to prescribe periodic cholesterol blood tests, liver tests, and additional ECHO or MUGA scans.  Check with your insurance company to see how often they will pay for this.

2)  If you have not had a Nuclear Stress Test, talk to your General Practitioner about this for their recommendations.

3)  Keep on top of this for the 5 years or more after Chemo as you are at a much higher risk than you were previously.  If symptoms show up, immediately get a referral to a Cardiologist.  They are your best line of defense!

4)  If you have any heart-related symptoms, get to your doctor or emergency room immediately.

It is doubtful I would have kept on top of the heart issues had I not been forced to do so.

I don’t want you to make that mistake.

Paraben Free Living After Breast Cancer

Living Paraben-free after Breast Cancer has been a huge challenge.  Parabens are preservative chemicals used everywhere – food, cosmetics, shampoos, soaps, cleaning products, and on and on!    There have been some studies done that show most tumors from women with Breast Cancer contain parabens.  Parabens are estrogenic and estrogen feeds most breast cancers.  That is why I need to avoid them.  I think everyone should be more aware of the dangers of parabens.

Wikipedia does a good job of explaining parabens if you need more information:http://en.wikipedia.org/wiki/Paraben

Imagine today you have your house full of your favorite cosmetics, soaps, detergents, and foods, and tomorrow you are told, “Get rid of it as it could kill you.”   I’ve been researching products for over a year now.  Some of them are absolutely outrageously expensive.   My goal was to find great and healthy products at reasonable prices.

This is what I am currently using:

1)  Dr. Bronner’s Magic Soaps – My Kroger Food Store has an organic section, and I am able to buy it there, at Walgreens,  or on Amazon.com.    I use the liquid soap for bathing and washing my face.  I also use Dr. Bronner’s bar soaps (I use the baby castile soaps) as it is the mildest.  It was gentle enough to use all through Radiation.

You can use this in the laundry or for cleaning as well.  Dr. Bronner’s company says there are 18 uses for it.  I’m still figuring them all out, but I like the product.  Dr. Bronner had some unusual beliefs as shown by his writings on his soaps.  He is deceased and his products live on by his family members.

2)  I’ve recently discovered YES TO CARROTS –     http://www.yestocarrots.com/      I have been using the shampoos, conditioners and face creams so far.  I love them.  They are sold at Walgreens, CVS, Rite Aid, and now Walmart.  The hair products are great.  I paid $7.99 for the shampoo (on sale from $8.99) and the same for the conditioner.  I’ve researched the ingredients, and they are all safe for me.  They keep adding new paraben-free products to their line.

3)  Apple Cider Vinegar and White Vinegar – back to basics.  I use this for cleaning.  If you pour about a cup in the toilet and let it for about an hour, it removes all of the built up grime, dirt and lines that bleach didn’t remove!!   This Reader’s Digest Article gives 150 uses for vinegar!   http://www.rd.com/home/150-household-uses-for-vinegar/

4)  Baking Soda – I use this for brushing my teeth (prevents mouth sores), I use it as a scrub in place of scouring powder, deodorizing the cat’s litter box, and the list keeps growing for its uses.   Of course, I use it in my refrigerator for odor removal.  This website lists 75 uses for baking soda!  http://lifehackery.com/2008/07/22/home-4/

5) Aloe Vera – I started using Aloe Vera during radiation and find it to be helpful as a moisturizer anywhere on your body!

6) Calendula Lotion or Cream – sold at health food stores, I also discovered this during Rads.  Great moisturizer at a great price!

I’m still researching paraben-free makeups that don’t cost $100 per ounce.   If you have some suggestions, please email me at b4Denise@hotmail.com  or leave a comment here!   Aveda has great products that are paraben free.  I do use some Aveda products, however, the prices are quite high.

Also, I discovered that Dial has a liquid soap for hand cleaning, that is Dial Naturals.  It is great and is sometimes on sale for $1.00 – paraben free.