What surprises me is that the treatment for breast cancer is just about the same worldwide for more advanced breast cancers which is Adriamycin Cytoxan and Taxol or Taxotere in the chemotherapy realm.  And just when I get a tad feeling sorry for me as I have to drive 60 miles (95 kilometres) one way to see my Oncologist, I get an email that puts it all into perspective.   Women who live in extremely remote areas that have to fly in a small float plane every week to and from treatment, women who live on islands that have to take a ferry or a boat to treatment, and women who are forced to relocate sometimes thousands of miles away from friends and family because they feel treatment close to home isn’t as good. They leave everything familiar to seek healing.

Perhaps one of the most unexpected emails I received was from a cloistered nun from a Monastery in Australia.  One of her sisters at the Monastery who was not computer literate, was undergoing Chemotherapy and needed some help and information.   Recently, I got a follow-up email from her telling me how well that Sister was now doing after treatment!  These nuns pray for me, I am happy to report!

Today I apologized to a young mom who lives in Mexico for my wrong beliefs.  She was diagnosed at age 34 with Triple Negative Breast Cancer.  She went to Houston, Texas for surgery and is receiving chemotherapy in Mexico as she wanted to be near her husband and daughter while undergoing treatment.  I am sorry to admit that when I think of treatment in Mexico, I immediately think it is substandard to the United States.  Where this young woman is being treated in a modern hospital in a mid-size city in Mexico, that is definitely not true.  Her Oncologist just returned from the American Society of Clinical Oncologists (ASCO) conference in Chicago and is up on the latest and newest treatments for breast cancer.  He hospitalizes her overnight after each AC chemo to keep a watchful eye on her after infusion since she is receiving dose dense.   She tells me that her hospital room in Mexico is much nicer than the one she had in Houston.

Sadly, I hear from women who lose their jobs because of breast cancer.   One woman from Ireland who lives in a very small town and was fired from her job during treatment, knows that it will be extremely difficult for her to find a new job as everyone in town knows she had breast cancer.   She said that being fired from her job was more traumatic for her than being diagnosed with breast cancer.

I cry each and every time when I hear from women of young children who pray they can make it to their children’s high school graduation.  It does not matter what country they live.  And I cry even more when I hear from breast cancer survivors who never thought they would make it to that milestone in their children’s lives, and they have as their kids may now be in college, getting married, or starting families of their own.   These survivors never take that for granted!

So if you are in the middle of chemo, facing a Mastectomy, or scared silly about Radiation or Radiotherapy as it is called in some countries, remember your sisters from around the world.  We are all in this together.

I had symptoms of a heart attack during Adriamycin, but thought it was side effects.  Clearly, I remember the night with shoulder pain, chest pain, and sweating. From then on walking up my steps, I had to rest every other step I was so out of breath.  Immediately, I developed a serious cough and even more fatigue.  You might ask, “Why didn’t you do something?”    Well, in my case the side effects of AC were so bad this seemed normal to me.   I never even mentioned this to my Oncologist as being out of breath is normal on AC.   My heart rate also elevated to 112 beats per minute which also can be normal during AC.

Thank God my Oncologist sent me to the Cardiologist when my Echocardiogram came back with “scary bad results” to quote my Oncologist.   We all blamed it all on Herceptin, but looking back, the symptoms were during Adriamycin.  Herceptin just added to the damage.  The Cardiologist immediately put me on heart meds.  After 10 months of heart meds, my heart has greatly improved I am thrilled to report. 

MD Anderson, the #1 cancer hospital in the USA, recently completed a study about heart failure and Doxorubicin (Adriamycin) with some amazing findings discovering the molecular basis for Doxorubicin’s damage to the heart.  It explains why some people can have a very small dosage of the drug and still get heart damage, yet others who have large doses have no heart trouble:

“Even in this age of targeted therapies, doxorubicin remains an effective agent used mainly in combination with other drugs against a variety of malignancies, including breast, lung, ovarian and bladder cancers,  as well as leukemia and lymphoma,” said Edward T.H. Yeh, M.D., professor and chair of MD Anderson’s Department of Cardiology and senior author of the study.

“However, its use is limited by its cardiotoxicity, which can lead to heart failure,” Yeh said. “We’re excited because we’ve identified the molecular basis for doxorubicin’s damage to the heart.”

The full article can be found here:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Because of their findings, MD Anderson is undertaking yet another study to determine if a simple blood test could tell a patient’s risk for cardiac toxicity during Doxorubicin (Adriamycin).   I find that to be absolutely incredible!

But as we wait for that to occur, if you are currently on Adriamycin, watch for these severe heart problems and let your Oncologist know immediately.  Do not hesitate to use that word “heart” when talking to your Oncologist.   If you have taken Adriamycin in the past, pay close attention to your heart.  After my experiences, I would recommend that you see a Cardiologist so your heart can be monitored.  Heart failure can happen many years after taking Adriamycin.

Has all of this been worth it?  Yes, I am still feeling better each day.  That is worth so much.  Do not get discouraged.  It is all overwhelming, but pay attention and speak up!

Recently, I celebrated my first birthday post-treatment.    Pre-cancer I dreaded birthdays because of being a year older and everything that goes along with that experience.   No longer am I ashamed of my age and trying to reduce it by a few years.  Everyday is a birthday to me.

Constant tears came to my eyes on my birthday and even a few sobs as I thanked God for the gift of life.   Gratitude truly overwhelmed me for how far I have come, for all those who helped me, and for being alive.   That emotion came from the depth of my soul and rose so strongly that it just came out my eyes like a fountain that had no where else to go.

Surprisingly enough, I got an email on my birthday from a breast cancer patient who is 34 but feels 74.  She was wondering if she will ever feel her real age again.  I assured her she will, but it will take time to slowly return to her actual age.   Finally, I am back to feeling my age.  What an amazing thing to feel 30 years younger than I did just a few short months ago.  I have found the fountain of youth!!  And my sympathy and compassion for older people has increased tenfold because I lived in my 80s for many, many months before returning to the wonderful 50s.

If you are a cancer patient going through active treatment, it does get so much better.  You may feel like dying today as you struggle your way through chemo.  That’s okay, but keep fighting.  There is so much hope.  Perhaps you feel like giving up because you don’t have any more strength or courage to muster.  Keep going.  You can do it. Just get through this hour and this day.   Don’t let anyone tell you there isn’t hope.  Next year will be so much better!  Keep remembering that and use that mantra to help you get through!

And if you have a family member or friend who is a cancer patient or cancer survivor and celebrating a birthday, send them an e-card from www.morebirthdays.com    It will be the most meaningful thing you can do!  And while you are at it, consider making a contribution to the American Cancer Society.

Cancer Rehab is a rather new field at many hospitals.  Since there are more and more cancer survivors, hospitals have realized that cancer survivors feel abandoned after over a year of intense treatment to suddenly be thrust aside and on your own. For years there have been rehab programs for heart patients, stroke patients, and just about any other kind of rehab.  Many cancer patients have debilitating side effects.  Prematurely they often decide that this is the way it is going to be.

In my case, since I already had Lymphedema in one arm and was receiving treatment, I thought I would have to live with the very limited range of motion I had in that arm as a result of Mastectomy, Chemo and Radiation in addition to many other side effects.

My local hospitals, the Mercy Health Systems in Toledo, Ohio, recently became affiliated with the STAR Program which is a program from Oncology Rehab Partners.  It was developed by Julie Silver, M.D., an assistant professor at Harvard Medical School, who is a cancer survivor.  A year after cancer treatment ended, Dr. Silver then in her 30s,  realized that cancer survivors needed help to heal.   Here you can find out if there is a STAR Program certified hospital near you:   http://www.oncologyrehabpartners.com/    My Lymphedema Specialist talked me into being a guinea pig for the program – I am Patient #2 at my local hospital.

My course of treatment has been Physical Therapy and Occupational Therapy based which has been a tremendous help to me.  Not only has my arm improved by 75%, my body pain has lessened, my fatigue has greatly diminished, and I feel more prepared to handle the stresses of daily life post cancer.   This has taken commitment on my part.   There are other elements to the STAR Program which are done at home like exercises, writing down fatigue levels,  monitoring your diet, and more out-patient hospital treatment.

If you are a Cancer Survivor or Cancer Patient, I would advise you to seek out a good Cancer Rehab Program.  Don’t wait until your Oncologist or physician tell you to, because they may not.  Often, they overlook that aspect of treatment.  You have to be willing to dedicate the time and effort it takes to do the work. But remember, it is worth it.

I had six months after active treatment ended before I started the Cancer Rehab Program.  I needed that six months to have the stamina to face more challenges.  Everyone is different.  Know what is the appropriate time for you before you start rehab.  For some people that might be immediately after active treatment ends.  For others, it may be longer.

Most insurances will pay for Cancer Rehab, but check with them before you start any program.  My insurance pays for 20 Physical Therapy visits and 20 Occupational Therapy visits per year.

If you are in the midst of Chemotherapy or active cancer treatment, take time to learn your lessons through the pain and suffering.  They will be valuable gifts to you in the future.  And if you have never been a cancer patient, I hope my lessons can be helpful to you.

1)  You only have so much energy in a day.  Use it wisely.  Plan things that take a lot of energy during your peak energy times of the day and  week.

2) Learn to listen to your body and respect what it needs – exercise, healthy foods, and nourishment from other sources.  Say no to things that do not nurture you or bring you life.  Just ask this simple question:  “Does this help me or harm me?”   Never hesitate to say no to things that harm you.

3)  If anything is not serving you well, people, places or things, begin removing it from your life.  It is a process, but make the first step.  The first steps are difficult, the remaining steps are easier.

4)  Make time for what is important to you and make sure you know what is!

5)  Appreciate all of life each and every day and give thanks.  And when those rough times come, I always say to myself,

“It’s better than Chemo!”

6)  Make plans for the future and dream big.  Picture yourself living life in these dreams!

7) Listen to the still, small voice of God.  He has a purpose for this second chance at life.

8) If you do not have 100% confidence in your doctor, medical facility, or medical staff, find another.  We often spend more time shopping for a new piece of clothing than finding the right fit in a medical professional.  Your life is in their hands.  Make sure you trust them with it!

9) Pray for those who supported you during treatment and return their love and friendship.  Their faithfulness helped you survive and continue to thrive!  Be grateful and show your appreciation.

10)  Begin to forgive those who abandoned you or never went out of their way for you during cancer treatment.  Learn how to be friendly yet keep your boundaries in place when and if your paths must cross.  They have proven themselves not to be friends.  Let them go in peace and remember with love the valuable lessons they taught you.

This new mammogram technology was only approved by the FDA in February, 2011.   http://www.diagnosticimaging.com/tomosynthesis/fda-approves-first-3-d-mammography-imaging-system

In one day, I heard from two women who had Tomosynthesis.   It probably saved their lives, and certainly gave them a much better chance of survival.  In their cases, they had to pay $50 and $40 more respectively in addition to insurance.  At my local hospital, they do not charge any additional, so check with your hospital.  So many women I hear from had lumps that were never discovered on a regular Mammogram.  By the time they were diagnosed, they were Stage 3 or Stage 4.  And over 40% of women who are diagnosed with breast cancer find their own lumps.  The cold, hard reality is that many , many women diagnosed with advanced breast cancer had nice little letters from their mammography center saying they were okay.

This story from Jane:

My breast cancer was found when I went for a routine mammogram and the woman at the front desk talked me into having a new test called Tomosynthesis.  Sometimes insurance doesn’t cover the additional costs, but my radiology center was offering it for $50.  The woman behind the desk reminded me that I would pay more for a pair of shoes, so I agreed to have it done.  Well guess what – nothing showed on the Mammogram, but there it was on the Tomosynthesis. That woman may have saved my life as my breast cancer was then caught early (Stage 1).

This story from Michelle from Iowa:

Since it is new technology, it can be difficult to find Tomosynthesis or 3D Mammography, however, more and more breast cancer centers are getting these new machines.  I would encourage you to find out where you can get this 3D Mammogram, ESPECIALLY IF YOU HAVE BEEN TOLD THAT YOU HAVE DENSE BREASTS OR DENSE BREAST TISSUE.  

On April 1, 2013, California became the fifth state passing a  law, which was bipartisan, that required patients to be told if they had Dense Breasts following Connecticut, Texas, Virginia, and New York.  Katie, one of my blog readers and a breast cancer patient, sent me this great information on Dense Breasts:

http://www.breastdensity.info/index.html

The only downside I can see to 3D Mammograms/Tomosynthesis is that according to USAToday, it has two times the radiation because it is like a CT Scan of the breasts.  http://www.usatoday.com/story/news/nation/2012/10/09/3d-mammogram-tomosynthesis/1615719/   There are pros and cons about this, but I will let you decide for yourself.   The stories of Jane and Michelle made me a believer.

My Chemo Nurse said fingers and toes have twice the circulation as other places in your body, so by icing them, it constricts the blood vessels and prevents the Chemo from infiltrating those areas. 

I would highly recommend you ask your Oncologist about this.  Make sure you have their permission.  Your Oncologist may look at you questionably, but get them to say okay!  Mine gave me the go ahead.  In fact, it worked so well for me, they are now recommending it for others.  One more added bonus, you get so sleepy from the drugs pre-chemo.  The ice wakes you right up!

Mary, a friend of mine, is 10 years out from Taxol treatment.  Both of her feet are numb and this will never go away.  She suffers greatly because of this on a daily basis.  If you can prevent neuropathy, it is worth the sacrifices. On my first attempt at doing this in the Chemo room, a young gal next to me  was Stage 4 Breast Cancer had iced on several chemo regimes.  She attested to me that it worked for her, so that gave me encouragement I needed to continue.

I am now 11 months since my last Taxol infusion.

1)  I have no neuropathy in either hand or any fingers.

2)  I had no nail discoloration or nail loss on either hand.

3)  My left foot had no nail discoloration or no neuropathy.

4)  My right foot has numbness on the upper tips of all 5 toes and I had one toenail discolored, but no nail loss.  I pulled my right foot out of the ice too often.

Here is what I did:

1)  I took two small dish pans to infusion purchased at a Dollar Store for $1.00 each.  Some people take frozen peas or baggies of ice.  The dish pans worked better for me.

2) Before the Chemo Nurse began the Taxol, I had her fill up the dish pans with ice.  I only used the ice during the Taxol infusion, not with the preliminary drugs.

3) I kept my socks on (brought an extra pair for after Chemo) and had the nurse give me a washcloth to put over the ice for my hands. (thin gloves would have worked as well)

4)  I soaked my hands and feet in the icy dish pans as long as I could tolerate it, then I would pull my hands and feet out of the ice for short breaks.   The nurse got me two towels to dry off when I was through.  I did it for the entire Taxol portion of the infusion.

With the annoyance the little bit of neuropathy causes me daily, I am so thankful I took the time to do this to prevent debilitating neuropathy.

Katie Brown from Bainbridge Island, Washington wrote and told me about the Clinical Trial she is participating in for her diagnosis of breast cancer.  The Clinical Trial is called                I-SPY2 and is currently recruiting patients from across the country in various locations (see below).

Terry Maas, an Oncology Research Nurse Coordinator at Swedish Cancer Institute in Seattle, Washington where Katie is receiving treatment, encourages women to look at these Clinical Trial websites to allow yourself time to absorb the information, educate yourself by identifying and understanding new terminology, while formulating questions you may have, so you can further discuss them with your Health Care Team.  Ms. Maas recommends reviewing www.ISPY2.org and http://clinicaltrials.gov/show/NCT01042379 to learn more about this I-SPY2 Clinical Trial.

I-SPY2 will help get investigational drugs to the market much more quickly.  Katie is undergoing standard chemotherapy treatment for her tumor, Taxol with Herceptin, then on to Adriamycin and Cytoxan with Herceptin.  In addition, a yet unnamed drug is being added.  The trial drug she is on is MK2206 which is in pill form and for her is taken as part of the Taxol protocol.   Katie’s tumor shrunk by one-third after only two chemo treatments!

This from the www.ISpy2.org website:

I-SPY 2 is a clinical trial for women with newly diagnosed locally advanced breast cancer

Today most women with breast cancer receive standard chemotherapy.  We know that some breast cancers respond well to standard chemotherapy but some do not.  The I-SPY 2 TRIAL (Investigation of Serial Studies to Predict Your Therapeutic Response with Imaging And moLecular Analysis 2) is a clinical trial for women with newly diagnosed locally advanced breast cancer to test whether adding investigational drugs to standard chemotherapy is better than standard chemotherapy alone before having surgery.  The treatment phase of this trial will be testing multiple investigational drugs that are thought to target the biology of each participant’s tumor.  The trial will use the information from each participant who completes the study treatment to help decide treatment for future women who join the trial.  This will help the study researchers learn more quickly which investigational drugs will be most beneficial for women with certain tumor characteristics.  The I-SPY 2 TRIAL will test the idea of tailoring treatment by using molecular tests to help identify which patients should be treated with investigational drugs.  Results of this trial may help make investigational drugs available to more women in the future.

____________________

HERE ARE THE LOCATIONS WHICH ARE CURRENTLY RECRUITING FOR I-SPY2 PARTICIPANTS:

Please refer to this study by its ClinicalTrials.gov identifier: NCT01042379

Six months into being an “official” Cancer Survivor, I made this realization:  Life is not going to be what it was before the cancer diagnosis.  Somewhere in the back of my mind, I believed that someday, somehow, everything would shift and it would be business as usual, and my pre-cancer life would come back magically.   I kept waiting for it.

This all started because one morning as I was donning my Lymphedema gear, taking my medicine cabinet full of pills and supplements, trying to walk because of the severe pain (side effect of the drug Arimidex), and inserting my prosthesis in place of my amputated breast,  it finally hit me that “this is the way it is going to be and you damn well better get used to it.”

I was praying and asking for guidance about what I need to do so I can move forward and not stay stuck. The big, burly, bearded husband of Food Network television’s star Southern cook, Paula Deen, popped into my head.  Why is he in my head, I wondered? I don’t even know his name!  So I googled “Paula Deen’s husband” and interestingly, I found out his name is Michael Groover and he is a Harbor Pilot.   Hmmm, I thought, what does that mean for me?

I found this definition and explanation:   A harbor pilot, often known as a maritime pilot, is a boat pilot with specialized knowledge of a particular port or harbor. The pilot is needed to direct large ships into a port where there are specific deep water channels surrounded by shallower flats.     Without the services of a harbor pilot, docking ships would become a big hazard. There would be a real chance of running aground and damaging the ship and the cargo.   It’s precision work, and as with the many steps and players involved, safe docking and undocking is crucial to the ultimate success of the voyage. 

Wow, I need a Harbor Pilot to help me with this part of my journey as I do not have the knowledge or tools to navigate these unchartered waters of Cancer SurvivorSHIP.  While I was out to sea in cancer treatment world, my medical team did all the captaining of my ship.  Now, I needed someone experienced in the hazards of maneuvering my ship into this new port.  And it is okay because I have never been here before, and it is all new to me.

A friend had told me a former pastor of mine from 20 years ago, who was a gifted counselor and a cancer survivor, would be glad to speak with me.   He is a survivor of a rare cancer.  He was not expected to live, but 4 years later, he is still here and celebrating life.  We shared cancer stories.  And when I heard about all that he had to deal with on an everyday basis because of all the damage done because of Chemo and high dosages of Radiation, it was inspiring and uplifting.

He then listened to me and was able to immediately assess where I was on my survivor journey.  “AA” he said, “Adapt and Adjust.”  He told me that the biggest learning curve for him in the past 4 years was adapting to what he can do, eliminating what he cannot do, and adjusting to new, yet exciting ways to live life. 

Two simple words, but because he has been there, he knew exactly what I needed.  He is a Harbor Pilot.    The imagery of my Cancer SurvivorSHIP coming into a new port, with new things, new possibilities, and new opportunities resonated with me.  Sure, in order to adapt and adjust, I have and will have to give up things that I can no longer do, no longer take care of, or that no longer serve me.   But I have, I can and I will. For the first time in a very long time, I felt real hope and not manufactured hope!   There is a big difference.

If you are a Cancer Survivor, please take time to focus on those simple words – adapt and adjust.  Perhaps, like me, you have been waiting for life to go back to the way it was before cancer.  Unfortunately, it will not go back.   But with some adapting and adjusting, you can be ready to accept the new life that awaits you.  Also, look for a Harbor Pilot to help guide your way to this new port – a support group, a counselor, or someone who has been there.  You cannot navigate these treacherous waters alone.

If you are not a Cancer Survivor, I’m not going to let you off the adapting and adjusting hook!  Perhaps it is time to review your life and see what you are holding onto that no longer serves you.  Oh, there can be many things:   a job, a relationship,  a certain way of doing things, a grudge, old habits, clutter, painful thoughts…the list goes on.  Time to adapt and adjust to new ways, new thoughts, new ideas, and new hope!  And if you cannot maneuver those waters of change, find or hire a Harbor Pilot to help you.

I would love to hear your stories!     Denise