Wednesday, April 27, 2016

How to be a Good Friend to Someone with Terminal Cancer



Her husband Patrick has big plans for the Northwest Arkansas METSquerade. Plans to double year one donations in year two, three, and stand up METSquerades all across the country. There's a disenchanted look in Lisa's eyes and her lips spread into a half frown. I know what she's thinking; that she won't be alive to watch this baby grow. But that's not the worst of it...

Cooper and Karis are Lisa and Patrick's world. Two of the most expressive and imaginative children I have ever met. Cooper tells people with great conviction that his mom has been imprisioned for stealing, buys his sneakers at the liquor store [where she buys EVERYTHING], and that he makes his own shirts out of sheep's wool from their farm. All complete fabrications. 100% bombastic. Authentic Cooper.

Karis' best friend is her momma Lisa. She's barely four, but there's an ancient understanding in her clear aqua eyes. Her hair is wavy, wild, and BIG, Dallas big and will not be tamed. She's a real life version of the cabbage patch doll and lots more lovable. She takes me by the hand to show me her favorite room which is really not a room- it's storage under the stairs. There's an avalanche of pink toys there but she knows exactly where everything is. She's the kind of little sister who just wants to tag along with big brother. Who tries to play as rough but gets twice as irked. She's daddy's princess who secretly wants to be a tomboy and the light in momma's eyes. You can't help but to adore her. That's Karebear.



Lisa was diagnosed with de novo MBC to bone last summer at the age of 36. She had been healthy and still technically is in spite of the rogue cells that sleep inside of her. She has responded exceptionally well to her first line therapy of Letrozole and Ibrance and the only active cancer in her breast will be removed next month. Our prayer and sincere hope is that she'll be an exceptional responder to this therapy which means she could go on for 3, 6, even 10 years without progression! But hope and prayer alone is not a strategy. This is why we're working so hard for the METSquerade benefiting Metavivor; her greatest ally to transform a terminal illness's into a chronic condition with a good quality of life.

Many of our family gatherings center around event planning and fundraising which frankly is a pleasant distraction, but there are frequent reminders of cancer's vice grip on her life. When cooper picks up a monster truck I see the thoughts broadcast on Lisa's face. " Will I be alive to watch him take his drivers test?" As Karis demands to be picked up and spun around by daddy, she wonders if she'll be alive to dance at her wedding. Those thoughts may be dark, but for an MBC patient who has just a 10% chance of living 10 years, they are an acrid reality.

I tell Lisa that it's ok to have those thoughts but not to dwell on them. Today she's stable. Today she's active. Today she's alive. So we live for today and we plan optimistically for tomorrow. She does the same for me. I too am living with terminal breast cancer.
So what do you do, say, and how are you to BE when your best friend (and you) have incurable cancer? You laugh heartier. You sing louder. You love more authentically. You LIVE more sincerely. No one is guaranteed tomorrow but ours our promised lesser so. For those who have lost friends, daughters, mothers, lovers, mourn them and honor them by investing in the cause.




To Lisa,



May our families grow old together. 
May we rock our grand babies on the front porch while we wear Depends because, let's face it, when we laugh hard, we pee a little. 
May we defy every statistic. 
May cancer be but a footnote in this crazy life we are blessed to share. 

I love you.



Monday, April 18, 2016

Top 7 Loving Tips for Caregivers




1. The most important thing for a caregiver is to be supportive and understanding. There will be times when the cancer patient may be grumpy and irritable; try to remember it is not directed at you personally.

2. Learn as much as you can about her cancer and treatment plan. Go to all medical and treatment appointments. Take notes and ask questions.

3. Make a binder and put all lab and screening test results in page protectors in that binder. Become familiar with which lab tests should be done each time. Ask the nurse or technician to check that they are on the list. Sometimes a test gets left off the orders by accident.

4. Familiarize yourself with insurance coverage and check the Explanation of Benefits from the insurance company. Sometimes a treatment is denied because the doctor did not provide the right documentation. This can be fixed quickly if you contact the doctor’s billing office. 

5. Let the social worker at your hospital help. She can help resolve billing problems and also steer you toward organizations that can help with living and medical expenses or arrange fun outings.

6. Take care of yourself. You need to stay healthy and strong to help your loved one.

7. Ask for help when you need to. No one can do this alone. 



Monday, April 11, 2016

Be Your Best Advocate




In July 2013, Kristin Todd was a happily married, 32-year old nurse practitioner enjoying the 34th week of her pregnancy when she discovered a lump in her breast.  Her prenatal appointments were scheduled so that she would have a chance to meet each doctor in the practice prior to her delivery, and her next appointment was with an obstetrician she had not seen before.  

Upon meeting the new doctor, Kristin reported that she had found a lump in her breast, but after a physical exam, the doctor dismissed it, saying she was too young for breast cancer. The doctor also said that they would wait until after her baby was born to do any kind of diagnostic testing anyway. 

As a medical professional herself, this answer didn’t sit well with Kristin. She knew this wasn't the case. She contacted her primary OB-GYN in the same practice and explained her concerns. This time, her doctor agreed that further testing was warranted and scheduled her for an ultrasound and biopsy.  The results came back- Kristin had invasive ductal carcinoma (ER/PR+ and HER2-).  

In the weeks leading up to her delivery, Kristin had a lumpectomy and lymph node dissection. She was induced at 37-weeks and gave birth to a healthy baby boy, Logan. At only three days postpartum, Kristin had a port placed for chemotherapy and underwent her first PET scan which revealed liver and bone metastases. This was certainly not the way any new mother would want to spend the first few days with her baby. 

Kristin received six rounds of chemotherapy and had her ovaries removed. After the chemotherapy, she entered NED (no evidence of disease) status for about 4 months, but then experienced a recurrence in her bones during the summer of 2014. She received radiation to the spots on her rib and spine and then enjoyed NED status for another 10 months. This past fall, however, Kristin was diagnosed with another recurrence on her liver.  

Kristin credits her family for helping her throughout this experience. Her father, a physician, was instrumental in helping Kristin seek out excellent medical care and expert opinions. Her mother and mother-in-law both came in from out of state to help care for baby Logan. Her sister, cousins, and friends all pitched in to help any way they could. 

Today, Kristin is hopeful that her upcoming scan will show resolution of her liver metastasis, having completed four rounds of Doxil chemotherapy. She looks to her son as her light and motivation in life. “I so believe in the power of the mind,” she states. “I have so much love and support around, along with my own positive outlook that I know I can get through most anything.” 


Receiving a diagnosis of Metastatic Breast Cancer can be overwhelming. So much emotion, so much information, so many decisions- it may feel more than you can handle. But we want to help you find that inner strength and reclaim your power. This comes through being your own best advocate. 

Kristin’s story provides some great examples of ways you can advocate for yourself as you navigate your way through your changing life. Let’s take a closer look at them. 

Take an active role in your health care 
In the course of your treatment, you will often hear the term “health care team” and that may bring to mind the many physicians, nurses, and therapists that you encounter. Make sure you aren’t forgetting the most important member of that team- YOU! You need to feel confident in and comfortable with your plan of care. Don’t be afraid to ask for a second opinion or to request an explanation if there is something you don’t understand.  

It’s a good idea to keep a running list of questions that you can bring with you to appointments.  It’s not uncommon to forget things during the hustle and bustle of a doctor’s visit, so writing things down will help.  

Kristin recommends taking a step back and re-evaluating what makes you happy, what is truly important to you. In her case, she finds that her patients bring her a lot of joy, so she has continued to work part-time. Staying physically active and meditating daily keep her focused and calm. Kristin also keeps a daily gratitude journal. "It helps to remind me that during my really down days, there is ALWAYS something I can find to be grateful for", she states. Keep doing the things you love and surrounding yourself with those you love. You may find that it'll help get you through each day.  

Educate yourself 
The more educated you are about your disease, the better able you will be to  take an active role.  It is really important that you take the time to learn as much as you can. This will allow you to better communicate with your team and make decisions that are right for you. 

There are some really great resources available to help you in this regard. 


Accept Help 
Advocating for yourself doesn’t mean that you have to do everything on your own. Sometimes the best thing you can do for yourself is to admit that you can’t do it all. Asking help when you need it is truly a sign of great strength.   

Can your mother come help watch the kids? Great! Is your neighbor offering to make dinner for your family this week? Take her up on it!  

Understand your rights and your benefits 
If you are a working woman, you are going to have to make some decisions regarding how you want to proceed.  Some women may choose to keep working as long as possible, scheduling their appointments around their work hours, while others may opt to take short or long-term disability. Discuss with both your employer and your health care team what options are best for you.  Make sure you understand what you are entitled to regarding benefits and payment during this time.  

When it comes to health insurance, it is important to be aware of your policy and what is covered.  If you have any questions regarding your coverage, don’t hesitate to contact Human Resources or the insurance company directly. With extensive medical treatment, you want to be sure you understand it all- deductibles, co-pays, out-of-pocket maximums. Start a file with all of your paperwork, so that you can refer to it if any questions or problems arise.  

Take care of your whole self 
During your cancer treatment, you focus so much on your physical well-being, but you don’t want to neglect your mental and emotional needs. It is normal to experience a lot of anxiety and stress, and you may want to find someone to talk to during this time, whether a therapist, a support group or a friend.  





Monday, April 4, 2016

The Realities of Living with MBC


Kelli Parker became a Metastatic breast cancer patient at age 33.
She is a wife, mother, Walmart sr manager, and fierce and outspoken advocate for MBC.
She promotes for less pink, more research, and promotes awareness and conversation through her social media.
On March 30th, Kelli opened a conversation for her Metastatic network:
"What would you most like people to understand about the reality of living with metastatic breast cancer?" 


Join the conversation: Visit Kelli Parker's Facebook and Twitter Page

What would you most like people to understand about the reality of living with metastatic breast cancer?

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123 comments
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Denise Chynoweth what it truly means.
Pamela Hacker i agreeeeee
Patty Silvers New That we might not look sick but the side effects of our meds pile up and the fatigue and anxiety are real.
Jersi Baker Very real
Megan King
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Erica Tubbs Baadzhi the sadness that whips up and wacks you in the face when you least expect it
Leah Townsend What reality is for us...what our true quality of life is, what we have to go through, how we have to feel, what all gets taken from us JUST to be alive.
Ruth Hirsch Josa that just because you are NED or clear scans does not mean that you are cured or beat it. All the side effects that we all have to endure just to try to keep things stable and by stable I do not mean cured.
Nancy Shell That we wake up and go to bed with it everyday. No day is the same for us. One day we may be able to do things and the next we may not. That we want to make plans, and be able to actually carry those plans out but truth is we don't know if we will be able to do them. They should understand that we want to go out. We want to have fun and get together but when the time comes, we may not be up to it.
Polly Barker Walker That it's not something we "beat" and even though we look well... That doesn't mean we feel well,
Colleen Logan Hofmeister Most people are DUMBFOUNDED when I tell them 30% of all breast cancer diagnoses will become metastatic, that mammograms don't detect all breast cancer, and that a paltry percentage of all monies raised go into research for stopping metastases and findi...See More
Connie Conrad-Baker I agree ^100% spot on... Couldn't have said it better!
Kim Schmidt Ramsthel True. That some days when they ask me how I am I just say fine even though I don't know how I am making it through the day because they really don't want to hear about my pain again. How can I be in pain I look fine. Or the best is when someone asks yo...See More
LikeReply2March 30 at 2:59pm
Megan King
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Shannen M Chavez That regardless of anything else we are still dying from this .. It's inevitable unless we are in some freak accident and lose life instantly.. I just choose to stay as positive as possible which allows me to live my life on my terms
Kim Schmidt Ramsthel While I do have an overall positive outlook or attitude I still have my moments where I am angry. I do my best to let it go because that's not how I want to live my life. I also don't want to be a negative nelly 24/7. Everyone has a balance. Mine just happens to lean more towards the positive side.
LikeReply1March 30 at 3:01pm
Shannen M Chavez That's great  we all choose how we personally deal with our own situations, ups & downs and emotional status.. Nothing is right or wrong in our situations.. I choose positivity because I cannot change the cards dealt to me just my outlook on it.. 
Megan King
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Sheila Rodriguez That there's no magical treatment; your special curry/turmeric/raw veggie enema isn't going to cure me! AND, I'm NOT failing or losing just because I can't be who you think I should be based on your reality TV viewing and 10-15 minutes of some special ...See More
Angela Valverde-Meza Being a stage 4 breast cancer survivor means something different for us. We will never beat it. We don't always look sick. Stage 4 is a marathon where the finish line is death, unless we find a cure. For some, the race is longer and for others it is shorter. Never stop praying for us. Put your money toward a cure.
Beth Angst-Beaver You never know what each new day will bring. Good day, terrible day, ehh day. And it never goes away. I am not a better person because of cancer. Just cause I look good on the outside..........My positive attitude isn't going to cure my cancer. Just ca...See More
Linda Christine Ellis Time side affects of meds who can we trust in the medical profession to many questions unanswered I feel invisible around my hospital how to get my consultant to listen many thanks god bless dying from the outside in not with out a fight cancer 0 Linda will win with dignity until the fight is over 😇😇
LikeReply4March 30 at 11:58amEdited
Cheryl Harmon-Miller That it's not fake..
Kristy Senior Hart That I'm not going to get better! It's not something that is just going to go away! I want them to stop saying "you beat it once, you can beat it again"
JohnandAlissa Thomas That even though I look the same as I did at dx, I am not the same person, at all.
Michelle Heitmann That the 'other shoe' can drop at anytime without warning. I suddenly lost use of my legs this past Friday...been in the hospital ever since. But...this seems to be neurological only...from my Rads in 2012. They are still testing. My previous spine sur...See More
Kelly O'Reilly Ugh!  so sucky! Hope they figure out something and fast!
Kim Schmidt Ramsthel Ah man I hope they can figure out what is going on. I agree you would think getting metastatic cancer would be enough.
Megan King