Honoring Alma Sanchez on Triple Negative Breast Cancer Day – March 3, 2015

Alma-Daughter (2)Hello Courage and denise4health honor Alma Sanchez on Triple Negative Breast Cancer Day on March 3, 2015.  Alma wrote her story on my Blog for 2014 Triple Negative Breast Cancer Day.  Her story, a young mom only in her 30s with triple negative cancer went viral.  Then Alma received the devastating news, a few months after her blog post, that she now has Stage IV Triple Negative Breast Cancer with metastases to her lung.

https://denise4health.wordpress.com/2014/03/03/triple-negative-breast-cancer-a-young-moms-story/

Alma is the most courageous woman I know, and I have been fortunate to meet plenty of them – so many of you are beyond courageous!   But Alma stands out – her faith, her courage, and the fact that even with her first go round with cancer, she had to fly from her city in Mexico to Houston for surgery and other medical visits.

When Alma was diagnosed as Stage IV, she was in a chemo-based with experimental drug Clinical Trial in Houston– she and her husband flying back and forth once again so she could be with their small daughter, sometimes so sick she didn’t know until minutes before if she could board the plane.   Alma would leave the hospital chemo chair and go to the airport.  Alma’s cancer had progression during the Clinical Trial in Houston.  These flights are outrageously expensive.  Plus, because she is going between countries, her insurance often does not pay for coverage which results in staggering medical bills.

Alma is awaiting confirmation for a Clinical Trial in Los Angeles because Alma and her husband NEVER GIVE UP and are amazing, courageous, and inspiring people!     Alma is a woman of great faith.  Alma’s faith and courage shine through.  I literally just got this message from Alma while I was writing this, so you can see for yourself!!

From Alma –

“Hi my friend! I’m right now traveling back to LA! They still don’t have official confirmation from Genentech (the company behind the Clinical Trial) but they told me I don’t have anything that could exclude me, and they scheduled me for tomorrow to receive treatment. They think they’ll get confirmation today. We are taking a leap of faith, and we are now flying through 2 airports in Mexico and 2 airports in the USA to get to Los Angeles. Pray for me, dear friend, that I can receive treatment tomorrow…and that it works for me…not only because of me, but for the millions of women who today need a better treatment than chemotherapy . Trusting God, we start this new journey.”

Please say a prayer for Alma and her family as this next round of Clinical Trial challenges begins.  The Clinical Trial that Alma will be participating is an immunotherapy clinical trial which hopefully will prove to be a major breakthrough in Triple Negative Breast Cancer and many other cancers.   This video does a fabulous job of describing how it works!  Thank you, Alma, from all of your breast cancer sisters, past, present and future.

http://blog.biowebspin.com/dan-chen-pd-l1pd-1-pathway/

Actress Kathy Bates, Lymphedema Spokesperson

Kathy BatesMarch is Lymphedema Awareness Month so I was absolutely thrilled to see that Oscar-winning actress, Kathy Bates, is a spokesperson for Lymphedema.  Ms. Bates had breast cancer with a double mastectomy with many lymph nodes removed.  As a result, she has Lymphedema in both arms.   Her recent February, 2015 appearance on the television show, “The Doctors”, was extremely informative.  Plus, the doctors added much to the discussion as did Ms. Bates own Lymphedema Physician.  As a fellow Lymphedema sufferer, I am so happy she is informing the public of this condition and reaching out to women who may have Lymphedema but have not gotten proper treatment!

Please watch this educational video!  It is worth the time to do so!

New Spring Arrivals at http://www.hellocourage.com  Marchcollage2015a

Molecular Breast Imaging (MBI) Quadruples Detection of Breast Cancer in Women with Dense Breast Tissue

Molecular Breast Imaging (MBI) could save your life if you have dense breast tissue.  New studies were recently released that confirms that it is nearly four times as effective in detecting breast cancer in women with dense breast tissue:    http://www.sciencedaily.com/releases/2015/01/150123101604.htm   NewTechnologySign I did not know this technology existed until about two months ago, even though it has been around for several years.  Not many hospitals have this technology.

On my Facebook page, I posted that Susan G. Komen of NW Ohio had grant money available in my area for uninsured or underinsured women for mammograms.  A friend saw the post.  Her husband lost his job, and they have been without health insurance for quite some time.  She had not had a mammogram in two years which greatly concerned her and found she was eligible for the mammogram.  At the small hospital where she had the mammogram, she was told she had extremely dense breast tissue. so they wanted her to go to a much larger hospital (Promedica Toledo Hospital) for Molecular Breast Imaging (MBI) which would also be funded by Susan G. Komen of NW Ohio.

My friend went for the test not knowing what to expect other than she was told dye would be injected into her bloodstream and mammograms would be taken with the dye present in her system.   Here is a good explanation of what occurs:    https://www.karmanos.org/?id=517&sid=1

My friend said the test consisted of four images and each one lasted seven minutes.  She said the hospital staff did many things to make her as comfortable as possible.  She indicated that you sit for the test (some technology has you lying down), they had a television and reading material while the test was being administered to help distract you.   The Radiologist told my friend that the previous mammograms she had since age 35 were virtually useless in her case because her breast tissue was so dense.   The Radiologist saw “a small spot” on the MBI and immediately gave her an ultrasound.  She finally got the “all clear” and the Radiologist told her after the test was completed, that she would need Molecular Breast Imaging (MBI) technology every year for breast cancer detection purposes.  My friend is so grateful that her care was not “short changed” because she was on a Komen grant.

In this video, Dr. Christine Granfield, a Radiologist, gives her view on Molecular Breast Imaging: https://www.youtube.com/watch?v=q-1KIevhwao

So women with dense breast tissue, please take note of this test and pass the word to others!!  I’ve received so many emails from women with dense breast tissue that were not diagnosed until Stage 3 or Stage 4 because their tumors went undetected.  If you have ever been told you have breast dense tissue, I urge you to talk with your doctor and see if this technology is available near you.

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NEW HATS AND SCARVES ARRIVING DAILY at http://www.hellocourage.com    Please check them out!  CH-h4activitydenimred1CH-h4reversibleblackwhite2SC-hijabbrownorange1SC-orangefloral1 CH-h4STpastel1SC-DDbreastcancerinfinity

Post Traumatic Stress Syndrome (PTSD) in Breast Cancer Survivors

Melissa is a breast cancer survivor of 2 years.  She has endured multiple surgeries, chemotherapy, radiation, Herceptin and is facing even more surgeries due to breast cancer.  In her earlier years,  Melissa was a Critical Care nurse in the Navy and was deployed in 2004.  After she retired from the Navy, she screened veterans for Post Traumatic Stress Disorder (PTSD) as a Nurse Case Manager for Operation Enduring Freedom/Operation Iraqi Freedom at a Veterans Administration Hospital.  Melissa was an expert at identifying PTSD and referred the veterans to Mental Health for Treatment.   So even with all of Melissa’s training, education, and military experience as a Nurse, Melissa says that no training prepared her for breast cancer PTSD, but it just made her aware that she has it.

According to the National Cancer Institute:

PTSD in cancer survivors may be expressed in these specific behaviors:

  • Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.
  • Avoiding places, events, and people connected to the cancer experience.
  • Being continuously overexcited, fearful, irritable, and unable to sleep.

Melissa says that with PTSD, your world becomes much smaller.  A cancer diagnosis,  chemotherapy,  radiation,  side effects, body image disturbances, etc. make up the perfect scenario for one to suffer from PTSD.  Studies show that over 50% of breast cancer survivors suffer from PTSD.  I believe it is much greater for women who have had “the breast cancer treatment book” thrown at them.  Melissa believes that more focus needs placed on the psychosocial effects of breast cancer treatment.

Melissa now works as a Clinical Nurse Navigator in a civilian hospital for GI/GU Oncology.  In order to cope with her flashbacks from chemo and PTSD, Melissa tries being proactive by avoiding the Chemotherapy Floor in the hospital where she had chemo and arranges to visit her Oncologist appointments at his satellite offices and not at the Cancer Center where her appointments were during treatment. Working with cancer patients on a daily basis does not bother Melissa, in fact, her experiences make her definitely understand what they are going through.  Her coworkers know her trauma and try to shield her from the breast cancer recurrence stories as best they can.

Like Melissa, I am still learning to live with PTSD.  On a recent trip to my Cancer Center, the chemo flashbacks were firing in my brain like a machine gun.   It struck me that it was the same week in January that I had Chemo #2 three years previously.  It was a Tuesday, the same day of the week, and same kind of cold January day, I was sitting in the same waiting room, on the same floor where I received chemotherapy, and being called back to an exam room.  My brain and body could not tell differentiate between the past and the present.   Several hours later, when I arrived in the safety of my home, my body literally started shaking like it would after Chemo.  And I had to sleep with the television on to distract my brain in order to fall asleep – what I had to do during cancer treatment.  The next morning, I vomited,  just like I always did the morning after all 16 chemo treatments.

Melissa has tried therapy with a PhD Cancer Psychologist, and it didn’t work for her.  She says what works for her is time and the love of supportive family and friends.  But therapy certainly may work for you.

Melissa and I agree on what helps us:

(1)  Have a panic buddy,  a cancer survivor friend, whom you can email or call to help talk you from the past to the present.  We call it “talking us off the cancer ledge.”

(2)  Have a go to place – a website, a survivor story place, a support group, a news article – anything that gives you hope and encouragement.  For Melissa, she keeps a clipping about a survivor who has a similar diagnosis to hers who has been alive over 10 years.  For me, I go to the Posting Boards on a favorite cancer website to read survivor stories of women who had bigger tumors than I had and more lymph nodes removed and are still alive.

(3)  Both Melissa and I play over in our heads all the positive things we are doing to keep cancer away – like regular checkups, taking certain drugs and supplements, trying to eat lots of vegetables, and staying away from bad things and toxic relationships.

(4)  Melissa said she often has to have a good cry to clear the air of her fears.  I think she is on to something.  Today, I finally gave into the tears about everything I’ve been feeling emotionally, and it really helped.

(5) Refrain from sharing your fears and flashbacks with family and friends unless it is someone who really understands.  Otherwise, you may end up feeling worse by being told your fears are unfounded.  No one can really understand unless they have been through it or a similar life-changing trauma.

candlecalm(6) Take time for yourself to do something you enjoy.  As cancer survivors, often we have forgotten how to just enjoy life as we used to do.  This may be because of side effects from drugs, financial struggles, or not enough energy to do beyond the basics. But it is so important to find something you enjoy that will help bring peace when you are in the  midst of a full-blown PTSD attack.

Take that first step whether it is getting professional help or learning your own coping mechanisms.  If you have coping skills that work for you, please share them!

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Hello Courage is now offering lovely neck scarves.  We all could use a little Spring!  Check them out!

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The Financial Burdens of Cancer – Part 1

If you were recently diagnosed with cancer, the feelings are absolutely overwhelming.  The ongoing thoughts that go through your mind after whether you will live or die, are finances.  Will I lose my job, will my insurance cover my medical expenses, who will take care of my family, will I have to file bankruptcy, will I have to go on welfare, will I lose my house, my car, will I ever be able to work again and the playlist continues over and over in your head.  It is beyond terrifying.

financial_burden_need_moneyWhen I was diagnosed, I felt all of those feelings as I was single and self-employed without any sick time or short and/or long term disability benefits.  Looking back with the old, “If I knew then what I know now”, I give this wisdom and advice:

1)  INSURANCE:  Most of us have absolutely no idea of what insurance coverage we have for a catastrophic illness like cancer.  Who knows if your insurance will cover all chemotherapy drugs (some are $20,000 or more per infusion!), blood transfusions, port placement, for example, the drug Herceptin for one year ($60,000), or a compression sleeve?  Most of us never even heard  these words before diagnosis.   Ask your hospital to check with your insurance company to make sure they are “in network” before you start treatment.

I made the decision to go out-of-town to the University of Michigan Cancer Center because I felt my life depended upon it.  When I called my insurance company, they said University of Michigan was out of network, and I would have to pay 40% of my medical bills, which would have resulted in over $100,000 or more of additional medical expenses. YIKES!  I called the insurance office at the University of Michigan Cancer Center for their help.  Within days, with their help in convincing my insurance company I needed their care, my insurance company agreed to pay my medical bills 100% except for deductibles and considered that hospital “in network”.  LET SOMEONE ELSE FIGHT THIS BATTLE.  If you go to a large hospital, they have staff that deal with the insurance companies so you don’t have to do so!

Also, because I did not have prescription drug coverage, the Neulasta shot was not covered.  Neulasta helps increase your blood counts after chemotherapy and costs on average $4,000 to $9,000 PER SHOT!!  A cancer patient may need as few as 4 or many, many more shots!   However, my hospital said if they administered the shot the next day with me as an out-patient, it would be covered.  It entailed my driving another 120 miles round trip on the day after treatment, but it saved me $36,000 for the four shots I needed!!

There are also very expensive anti-nausea meds, Emend, which costs $100.00 per pill.  If you do not have prescription drug coverage, the hospital can give it to you intravenously which has a much longer effect, and then most insurances will cover it.

There is a program for cancer patients who have high co-pays for drugs such as Neulasta or Neupegon – if you have high copays, check this out for help in paying those co-pays:  https://amgenfirststep.com/

2)  HELP: Ask your most detail-oriented and computer savvy friend to help you find what services are available to cancer patients in your area. Upon diagnosis, friends and family ask how they can help you.  PLEASE take them up on their offers as you need to practice this new and difficult skill of accepting help.    Many don’t qualify for state welfare benefits, but other help is available no matter how small.  It all helps!  For example, I just learned that in my city there is a new program for cancer patients and their families called Nightingale Harvest. The only requirement is that you are in active treatment.  You need a note from your Oncologist–then they provide food, cleaning supples and toiletries to the cancer patient and family throughout treatment free of charge.  What a marvelous charity!

While I was undergoing chemotherapy,  my hospital put me in touch with an organization that gave me $300.00 in gas cards based on miles driven to and from treatment.  Their only qualification – undergoing cancer treatment.  I will never forget their kindness.  It still brings tears to my eyes when I think about it.

Here is a compilation of numerous organizations that provide help to cancer patients:

http://www.1uponcancer.com/freebies-and-discounts-for-cancer-patients/

3)  BEYOND HELP - If you are in a situation such as you have no insurance coverage, have no savings, lost your job, or any other dire situation, let friends and family help by either setting up a fundraiser or an online fundraiser such as http://www.gofundme.com   or  www.youcaring.com   to raise money for you and your family.   Please don’t be too proud, as people do want to help you!

4)  CLEANING - Most cancer patients have very little energy and especially no energy to clean your house.  Cleaning for a Reason is a service in the USA and Canada providing cleaning services to cancer patients while in treatment. http://www.cleaningforareason.org/

5)  MEALS – The best thing friends and family can provide are meals with food a cancer patient can eat.  This varies from person to person.  This website offers a free calendar where friends and family can sign up to bring meals to the cancer patient, and then sends email reminders to the patient and the food preparer!   www.mylifeline.org

6)  PERSONAL CARE – Many organizations offer things such as massages, reflexology, relaxation, emotional health, and other classes for cancer patients and their families.  The hospital where I received radiation treatment, provided me with a weekly massage at no charge.  It was a great comfort to me.

7) FAMILY TIME – One amazing organization, Little Pink Houses of Hope, provide vacations to breast cancer patients and their families.  For more information, go to:   https://www.littlepink.org

8) AMERICAN CANCER SOCIETY –  http://www.cancer.org  The American Cancer Society will put you in touch with help.  They also offer a free program for female cancer patients…Look Good, Feel Better.   http://www.lookgoodfeelbetter.org    I attended and it helped so much!  They provided makeup and skills to help you cope during treatment, like how to draw in eyebrows.  I HIGHLY recommend attendance at this free class.

You will make it through and things will get better.  But in the meantime, ask for help and accept help to relieve some of the financial burdens of cancer.

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I offer chemo hats for every budget and keep my profit margin low to help others – please check them out at http://www.hellocourage.com     CH-h4flappergrayred1

UPDATE: Stage 4 Miracle Breast Cancer Patient

Denise McCroskey:

An update on Catherine Jackson, Stage 4 Miracle Breast Cancer Patient

Originally posted on denise4health and Hello COURAGE:

miraclebreastcancerTis the season for miracles and here is one for you from Catherine Jackson, a Stage 4 breast cancer patient.    Many of you read her story and have asked for an update.  The most recent update on Catherine’s miracle story is at the end!  She had her latest PET scan in December, 2014.  If you have not read her miraculous story, you will be encouraged and amazed!

Note from Denise:  Catherine and I became acquainted when she wrote me shortly after an initial diagnosis of Stage 4 breast cancer in August, 2013.

Catherine commented  on my blog several times while she was undergoing Taxol chemotherapy.  In true “Catherine style” she was giving encouragement to others.  Catherine always amazed me because in spite of her trials, she was always positive and upbeat.   We had no contact since last September, 2013 until April, 2014 when Catherine posted this update on my Blog which absolutely astounded me.  It will you as…

View original 1,448 more words

Lymphedema Warnings

Since it is the holiday season, that may mean hauling gifts, moving Christmas trees, lifting heavy boxes, shoveling snow and perhaps flying to visit family. Which makes it a great time to talk about Lymphedema!!  You do not want this to happen to you:

Breast Cancer Survivor who lives with Lymphedema

Breast Cancer Survivor who lives with Lymphedema

Lymphedema is like strapping a brand new puppy to your arm 24 hours per day.  It constantly demands attention.  Never is there a moment when you do anything from walking to heavy work, that you aren’t thinking about your arm and Lymphedema.  I hear this from people who see my compression garment and ask me, “What did you do to your arm?”   My response:  “I have Lymphedema from breast cancer.”   Sometimes,  I get tired of dealing with the questions and explaining so I have used these responses:   “Shark Bite”  “Bar Fight”  “Snowboarding”  “Alligator wrestling”  and “Parachute got tangled”.  I do that because when I tell them the whole breast cancer connection,  9 times out of 10 I hear this response:  “Well, it’s better than the alternative.”  But people respond the way they do because they have no idea about what it is like to live with Lymphedema.  And if you are a new breast cancer patient and haven’t been warned about the ins and outs of Lymphedema, you do not understand either.

Recently, I got an email from Jan, who had completed “Red Devil” Chemo and was in the middle of Taxol.   She had some questions for me.  One was her arm was bothering her.  After we wrote back and forth, she told me she had 18 lymph nodes removed during a Mastectomy.  I told her that her arm symptoms definitely sounded like Lymphedema warnings and that she should get to a certified Lymphedema therapist immediately.  Jan wrote me back just a tad perplexed.  Not one person – her breast surgeon, her Oncologist, her family doctor – NO ONE had told her she was at great risk for Lymphedema.   My telling her was a total and complete surprise to her.   She was horrified to know that her medical providers neglected to tell her this extremely important fact!!  Jan lives in a rather large city in California.  This should NOT be happening!

Jan is not the first person I’ve heard from that has never been warned about Lymphedema.  It still shocks me!  Since I have to live with the challenges of Lymphedema every day of my life, it is so frustrating to me that women are not warned about this great malady while going through breast cancer treatment!

Brenda from North Carolina and I became acquainted after she wrote me to tell me she was the fashion diva of the chemo ward when she bought hats my online store, Hello Courage  (www.hellocourage.com)  Brenda has a great sense of humor and always makes me laugh.  Brenda has been hit hard by a major Lymphedema onset shortly after her Mastectomy and lymph node dissection which happened after chemotherapy.  These are Brenda’s words about her emotions as she deals with Lymphedema.  Brenda has had such a flare up, she has to use a Flexitouch pump.  With Brenda’s great sense of humor, she has had plenty to say about this huge contraption.  But here Brenda speaks from her heart and tells us her emotions when dealing with the daily challenges of Lymphedema:flexitouch

“Lymphedema is a real hit to the emotional equilibrium. I knew very well, especially after reading your blog, that I was almost guaranteed to have issues, but somehow the reality was nothing even CLOSE to the abstract. The idea of having to wear a glove and sleeve just doesn’t seem that bad… until it’s OMG, MY ARM IS HUGE AND THIS HURTS AND WHY WON’T IT RESPOND TO WHAT WE’RE DOING? And then you look at the pictures of limbs that have gone rogue and just won’t be tamed, and you panic, thinking “Is this going to happen to me? What then?” Suddenly the LympheDivas sleeves don’t look so cute, and Lymphedema gets serious in a big hurry!

I think the timing is part of the whole emotional aspect of Lymphedema as well.   It seems to fall under the “last straw” category, after you’ve already fought through everything else in breast cancer and are, quite frankly, worn down and hanging on by fingernails. I’m pretty good at putting on the happy face and plodding forward, but when you’re still weak from Chemo, having ungodly nerve pain after the mastectomy, dealing with seromas, and cording, and radiation burns, it’s just the cherry on top of the big ol’ crap sundae!  And while you got through chemo, and healed from surgery, finally, and your skin grew back after radiation, are dealing with the side effects of Aromatase Inhibitor drugs, the harsh reality that Lymphedema is forever washes over you. It’s just too much!”

Amen, Brenda.  Well said!  So PLEASE ladies, if you have had one or more lymph nodes removed, make sure you make an appointment with a trained Lymphedema specialist or get to a Lymphedema class. You can find a therapist or a class at larger cancer centers or a larger hospital.   The reason it is necessary for you to do this is to find ways to PREVENT Lymphedema from occurring.  Many of us couldn’t have stopped it from happening.  But many of us CAN!  Please take this warning seriously.  Many surgeons and oncologists tell their patients, “Oh you only had 2 nodes out, you are not at risk.”   That is WRONG information.

I’ve written much about Lymphedema in the past which was what Brenda was referring to — giving many facts, what to avoid doing, warning signals, what you need to do if you have had ANY lymph nodes removed.  Please read them again!  It may save you from the realities that Brenda and I both deal with on a daily basis.

https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

https://denise4health.wordpress.com/2012/08/15/lymphedema-lymph-nodes-and-breast-cancer/

ALSO, please be sure to read the Comments left by other women below!  Very helpful information!!

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Brenda was the fashion diva at her hospital thanks to hats from http://www.hellocourage.com —  big hat sale going on plus Discount Code — check them out and also my wicking sleepwear that helps you sleep while dealing with hot flashes!  THANKS SO MUCH FOR YOUR CONTINUED SUPPORT!

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