I’ve applied to a lot of companies over the years for a variety of jobs. You know how it goes. They tell you what type of superhero employee they’re looking for, and you tell them how your particular superhero cape comes in every size, shape and color that they happen to need. You land the job and after a short period of time, you’ve conquered the learning curve, multitasking like a pro. Everyone relaxes, and you start arriving home most evenings at a reasonable hour. Even when you love your job, there still is that moment each day when you roll your sleeves back down, close the laptop, and turn out the office lights.

Unless your job is that of care giving, carer or care partner—the title changes but not the responsibilities. I’m not talking about those dedicated individuals who offer caregiving services for compensation. As wonderful as these people are, they have a job description and a defined end to their day. I’m talking about people who find themselves thrust into a position of caring for someone—usually a loved one—who is critically, and in many cases, terminally ill.

Back before my husband’s health took a sharp left turn, I had a great job, with great hours and an enviable benefits package. I was also pursuing my degree while juggling the standard responsibilities of wife and mother. Clearly, I don’t shy away from long hours of hard work. One day, though, I realized that somewhere in all of my busyness, my husband’s health was steadily eroding. And that erosion now required my full attention. I had not applied for the position of care partner, but I had agreed to care “in sickness and in health.” And just like that, I landed a job that lasted for 4 years, 11 months and 17 days. A superhero cape would have come in quite handy.

crayonsCare partners have a colorful job description. If Crayola had a representative color for every care-partnering responsibility, it would fill one of those big boxes that make an artist deliriously happy. Whether you are the care partner for your spouse, your child, your parent/grandparent or a friend, here are 50 of those shades. I’m sure there are more.

 

  1. spouse/partner
  2. cook
  3. maid
  4. butler
  5. organizer/event manager
  6. pharm tech
  7. nurse
  8. physical therapist
  9. mental health therapist
  1. financier
  2. chauffeur
  3. cheerleader
  4. occupational therapist
  5. legal aide
  6. insurance specialist
  7. HR rep
  8. scheduler
  9. parent/grandparent
  10. child
  11. sibling
  12. friend
  13. antagonist
  14. mediator
  15. IT guy
  16. spiritual advisor
  17. import/export
  18. teacher
  19. student
  20. fashion designer
  21. entertainer
  22. architect
  23. gardener
  24. sanitation executive
  25. entrepreneur
  26. historian
  27. philosopher
  28. negotiator
  29. police
  30. social media coordinator
  31. event planner
  32. author
  33. handyman
  34. interior space designer
  35. valet
  36. grant writer
  37. motivational speaker
  38. realtor
  39. travel agent
  40. nutritionist/dietician
  41. diplomat

amazingFor all of you care partners out there reading this, first of all, I salute you.  As a former member of your ranks, I recognize the 24/7 shifts of work and stress that go largely unnoticed and unsung by others. Secondly, I remind you to keep perspective. As difficult and taxing as care partnering is, you still have time to make memories with your loved one. Please do so at every opportunity before it is too late. Thirdly, I invite anyone who would like to add to my list of 50 shades, to write in their additional responsibility(s) in the comments below. Take a moment to pat yourself on the back for the magnificent work you do. You have certainly earned a moment of recognition.

Standing in the storm, adjusting my sails,

Sheryl McIntire

Do you want to give a shout-out to your care partner? Tell us in the comments or email me at sheryl@patientpower.info.

where-are-they-now[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. In this blog, Diana Riley shares with us her latest news. For previous conversations with Diana, click the link below.] 

Diana’s Story: A 17-Year MPN Journey

“…For the times they are a-changin’.” Bob Dylan wrote those words in the 1960s and, though change is never easy, those of us with MPNs are happy to see change. When I was diagnosed with essential thrombocythemia in 1997, every article I read put the life expectancy at about ten years. Thanks to excellent medical care, I am still here and doing well 19 years later.

TheTimesSwedenIn 2013, my original hematologist referred me to an MPN specialist, Dr. Brady Stein. He reviewed my previous bone marrow biopsy slides, and determined that what I actually had back in 1997 was not ET, but prefibrotic myelofibrosis, a term that did not even exist back then. So my diagnosis was changed to primary myelofibrosis. I already knew that I was JAK2 negative, and in 2014, I found out that I am CALR positive.

For many years, I was on anagrelide (Agrylin) to control my platelets. It worked very well for me, keeping my platelets in the 300s. I did have cardiac side effects from the anagrelide, which I had to plan my exercise around. It also lowered my red blood cells, and I was anemic for many years. Because the anemia happened gradually, I had no symptoms from it. I was still able to work, exercise and do everything I wanted to do. When I started seeing Dr. Stein, he weaned me off the anagrelide and onto peginterferon alpha-2a (Pegasys), which I continue to take today. My platelets run a little higher on the Pegasys, but I am no longer anemic. I also take clopidogrel (Plavix) and low-dose aspirin. I started these shortly after my diagnosis, as I had had a few episodes of visual disturbances. That was the only symptom of my MPN. This combination of blood thinners has prevented any further episodes.

When I first learned that I had a bone marrow problem, my first thought was, “I’m going to die.” I started making mental plans for my children’s futures, for my daughter’s wedding. When I got my MPN diagnosis, I was actually relieved, as it was much better than the worst-case scenario that was going on inside my head. Fast-forward 11 years to my 50th birthday. My supervisor at work commented that her 50th birthday had been a hard one for her, and she asked me how I felt about turning 50. I had never even thought about it. I told her that, at one point, I did not know if I would make it to my 40th birthday, so 50 looks pretty good. I continue to cherish each birthday as they truly are a gift.

Life today is as busy as ever. My husband and I recently celebrated our 40th wedding anniversary. We have three adult children who are all married. We also have nine grandchildren, one boy and eight girls, who range in ages from 3 to 13 years. They keep us busy with baseball and softball games in the summer, and basketball and volleyball in the winter. Our county fair recently ended. We spent a lot of time there watching two of our granddaughters show their horses. Their younger cousin was involved in mini 4-H, and she walked a pig, a cow and a mini horse. She also had a chicken at the fair all week. Of course, we had a corn dog and an elephant ear while we were there

When I am not involved with my grandchildren, I have a small vegetable garden, I work in the yard, walk the dog, crochet and make stained glass. I continue to work. I am a registered nurse, and I work with people who have diabetes. One thing I have learned is, a diagnosis of a chronic disease is never easy. It is truly a life-changing event, and some people need help accepting their diagnosis. Some of my patients have had their heads buried in the sand for years, ignoring their disease, and paying a hefty price in the end. It makes me sad that they did not get the help that they needed sooner. But do not let yourself be defined by your condition. I want to be someone who just happens to have myelofibrosis, not an MPN patient.

Over the years, I have attended several MPN patient educational events, and I even spoke at a Patient Power event in Chicago, in June 2014. These events are wonderful opportunities to learn about MPNs. The best part, though, is meeting other people with your condition. MPNs are pretty rare, and it wasn’t until I attended a conference in the fall of 2012 that I met someone else with an MPN. I actually keep in contact with two people who I met at these conferences. If there is one in your area, I would encourage you to make arrangements to attend. I would also encourage you to try to read as much as you can about your MPN. Ask your doctor questions about your condition and treatment plan. Knowledge truly is power.

When I was diagnosed with my MPN, I asked what I could do, besides take my medications. I was told to try to stay as healthy as I could—to eat a balanced diet and exercise every day. I have to say that I have tried to be a “good patient,” and I have done this to the best of my ability. When that miracle cure comes along, I want to be healthy enough to receive it! There is so much more research on MPNs now, than when I was diagnosed. At one point, I actually had become complacent and had quit seeking information about MPNs, as there was no new information. Not so now. There is a lot of research going on, with many new developments. This is all very encouraging for those of us diagnosed with an MPN. So Bob Dylan was right, “…the times they are a-changin’.”

No time for complacency,

Diana Riley

randy-broad-book[Editor’s Note: This blog has been reprinted by permission. It was originally printed in the publication, Patient Resources.]

In March 2008, at 52, Randall (Randy) Broad was active and in good health, except for a nagging cough. Chest X-rays and an endoscopic examination showed nothing and, according to his primary care physician, his symptoms didn’t warrant more expensive tests such as an MRI or CT. It wasn’t until he coughed up blood nearly two years later that he was sent to a pulmonologist for a bronchoscopy. A 3-centimeter mass in his lower left lobe was hiding behind his heart, and Randy was diagnosed with Stage III non-small cell lung cancer.

The news was delivered quickly and matter-of-factly. The pulmonologist referred him to a surgical oncologist, told him he had a tee time to make, shook his hand and promptly left. Still in shock at hearing the diagnosis, Randy brought a friend with him for support to meet the surgeon a few days later. This discussion also ended up being decidedly one-sided, with the surgeon dictating his plan of action, stopping only to take personal phone calls while Randy sat dumbfounded across from him. Frustrated, he turned to his friend and told him he couldn’t listen anymore. He got up to leave, and the doctor told him he wasn’t done.

“Well, I am,” Randy said. At that moment, he refused to just be along for the ride. “I decided I needed to interview doctors, to shop around. I found someone who also had Stage III lung cancer, and she gave me a referral. I took a different friend with me this time, and the doctor spent more than an hour with me at that first visit.

At the end of the appointment, he asked me what questions I had. I told him the only questions I had were the ones I didn’t know to ask. He assured me that was what he was there for. My friend looked at me on the way out and told me that  I’d found the right guy. I agreed.”

At the time, Randy was divorced, and his son (13) and daughter (14) lived with their mother. He didn’t share his diagnosis with the children right away. He wanted to process it first. After all, this wasn’t what he pictured when he thought of lung cancer. He wasn’t a smoker, and he wasn’t considered high-risk. When he was ready, he told them his news and followed up by taking them to the hospital’s family chaplain. On the way home, he asked if they would like to return for another visit with the chaplain. In unison, they said, “No, we don’t need to because we know you’re going to be fine.”

After surgery to remove the tumor, he had months of chemotherapy followed by radiation therapy. He had side effects related to the treatment, including nausea, lung infections and muscles that are forever challenged. He isn’t able to golf and ski like he used to, and he is very susceptible to pneumonia.

“If I get the slightest cold, it goes straight to my lungs. It’s a bear.”

In spite of that, Randy has been cancer-free since the end of 2008 with no recurrence. His life with lung cancer changed him significantly, and not just physically. Before his diagnosis, he thought of himself as a good father but he worked a great deal—so much that he felt he missed some very important family experiences. He decided to “live every day like he had cancer,”  and he started by writing a book for his children. They were young and didn’t know him as well as he wished. They hadn’t learned his values and his principles. His primary motivation was that when he was long gone, they would have a book on their coffee tables that could remind them of him. He teamed up with a professional life coach and in 2010, It’s an Extraordinary Life — Don’t Miss It was published. And, Randy was well on his way to a new career in corporate storytelling.

“It all boils down to having an authentic story to tell. What inspires people most is hearing how someone overcame adversity, because people can identify. We all face hurdles and the greater the obstacle, the greater the glory in overcoming it.”

At his leadership workshops, he tells the story of his cancer diagnosis. The experience was pivotal to him. He firmly believe if he hadn’t listened to his gut and stepped into the driver’s seat regarding his own care, he wouldn’t be here today. He ties that and other life stories to helping others realize their personal and professional goals.

His audiences range from advocacy groups in the lung cancer community and corporate events to patients and caregivers who follow his blog (www.RandallBroad.com).

Randy is extremely active in the lung cancer community, constantly working with patients and advocacy groups to promote education and empowerment. By being so involved, he’s in the precarious position of losing friends. One extraordinarily bad day, he lost three friends to lung cancer. It hit him hard. Now, he doesn’t take anything for granted. And each time he talks with friends who are battling lung cancer, he talks to them as if it might be their last conversation.

“It boils down to accepting life and realizing it happens, but it affects you every time. You never get used to it.”

Still, he’s committed to showing others by example that they have the right to know their options for treatment.

“There is a lot of fear and stress when you’re newly diagnosed that you can’t overlook. If my stories help one person, then it’s worthwhile.

Reprinted with permission, ©2016 Patient Resource LLC. All rights reserved

World Lung Cancer Day…August 1, 2016. Four years ago was the very first World Lung Cancer Day. It isn’t a fun day like Grandparents Day or a birthday. It isn’t a silly day like National Pizza Day or Hammock Day…There are 365 days each year, and we celebrate birthdays and anniversaries, graduations, and weddings. World Lung Cancer Day isn’t there to celebrate—just the opposite. We are trying to raise awareness for the deadliest of all cancers—worldwide! In 2012, there were 14.1 million new cases of lung cancer with 8.2 million deaths. That’s not cause for celebrating.

It’s ironic that the first World Lung Cancer Day was the same day Jillian started her chemo/trial treatments in hopes of prolonging her life. I was oblivious to any days or months associated with lung cancer. Now I have a slightly different perspective. I see these days/months as an opportunity to shout, jump, yell. I’d even stand on my head if it would help bring lung cancer into mainstream conversations.

I have to admit that for many years I participated in a breast cancer walk. My awareness of cancer was that I was more likely to get this type than any other. That was until Jillian and our world was rocked to the core with a lung cancer diagnosis. It’s not breast cancer that kills more women; it’s lung cancer. Which brings me to question the new law that was passed. Most people won’t know that H.R.2722 was signed into law this past April without fuss or horns and whistles that will permit the U.S. Mint to release a series of three coins commemorating breast cancer. I for one, signed a petition, albeit late, to stop this from happening. The first coins will be minted in 2018. And it makes me angry, frustrated, and..I just want to shout! And this saddens me.

Here are just a few of the findings noted in the bill:

  1. Breast cancer is the most common cancer among American women.
  2. Breast cancer is the SECOND leading cause of cancer deaths in women. But thanks to early detection that number has decreased since 1989.
  3. There is strong interest among the American public to do more to tackle this disease.
  4. Finding a cure for breast cancer is a goal of the United States Government.

I could go on…but it won’t change the outcome. I sincerely congratulate all women and breast cancer survivors for raising awareness to new heights. Besides October being pink with all the pink ribbon accessories you can purchase to support breast cancer, you can eventually buy a coin or three to commemorate this cancer. I am glad we have so many women and men who are surviving breast cancer. Some of my lifetime friends are survivors, as is my sister-in-law. Yes, they deserve a lifetime…all cancer patients do!

Lung cancer isn’t pretty, pink or sexy. The majority of people’s perception is that based on personal lifestyle choices (unhealthy living, smoking etc.) lung cancer patients gave themselves this disease. I realized while attending the Free to Breathe Leadership Conference this past June, that we all have unconscious biases, and that seems more prevalent with lung cancer than with any other cancer. As long as the bias remains, our loved ones with lung cancer will not see equality in research funding, understanding and compassion. Which brings me to a new bill that was introduced to the House of Representatives this past May by Rep. Nolan of Minnesota: H.R.5263. It’s entitled: “Women and Lung Cancer Research and Preventative Services Act of 2016.” Some of what this bill addresses is:

  1. In the U.S., an average of 198 women die each day of lung cancer.
  2. Lung cancer is the leading cause of deaths in women.
  3. The National Cancer Institute estimates this year 71,600 women will die from lung cancer—more than breast cancer (40,450) cervical (4,120) uterine (10,470) and other gynecological cancers (1,990)

World Lung Cancer Day is here again…and what is the state of this terrible disease? Well…since the last World Cancer Day, seven new drugs were approved for treatment. Seven!!! Our research scientists are getting more innovative with looking at these cancer cells. For instance, Dr. Adam Marcus from Emory School of Medicine has recently discovered that cancer cells have leaders and followers. The leader cell breaks off from the tumor and then returns to pick up the followers…without followers, the leader cell can’t continue to mutate and metastasize. Wow! Who knew? The Federal Drug Administration has recently approved the first blood-based genetic based test that can detect the epidermal growth factor receptor (EGFR) gene mutations in non-small cell lung cancer patients. A non-invasive test? Awesome! All the advances in screening happened because of research. And again, these are just the tip of the iceberg. There are more lung cancer survivors today because of these and other efforts. But the flip side is that lung cancer is still the leading cause of cancer deaths, receives the least amount of funding, federal or other, and the 5-year survival rate is less than 17 percent

As a lung cancer advocate, we have a lot more to do. We should do better for those, like Jillian, affected by lung cancer. I’m not advocating another law to commemorate lung cancer by minting a coin, nor do I fault the breast cancer community for getting one. I don’t want any one cancer to get less funding. I just want equal funding, compassion and understanding for lung cancer. I’m advocating that we owe it to everyone to work collaboratively to fund research. It’s great to have World Lung Cancer Day, Lung Cancer Hope Month and Lung Cancer Awareness Month. But we need more than a month or day to understand and break the hold lung cancer has within the patient. We need to fund innovative researchers, and we need to find new treatments and life-saving options that will lead to cures! I’d like to say no coins involved, but that would be silly, as we need coins and dollars, lots of them, to find a cure.

So with World Lung Cancer Day here, I ask that we raise awareness, continue to educate, and change people’s perceptions. Ask your congressional representatives to join the U.S. Congressional Lung Cancer Caucus and to co-sponsor Representative Nolan’s bill. And yes, fund lung cancer research. Anyone can get lung cancer—plain and simple.

Stronger than lung cancer,

Ros Miller, President & Co-Founder Jillian’s Dream

jilliansdream.org

facebook.com/jilliansdream

Twitter: @jilliansdream

LinkedIn: Jillian’s Dream

Late last month, Vice President Joe Biden held a Cancer Moonshot Summit at the White House, the intent of which was to vastly accelerate the “…understanding, prevention, diagnosis, treatment and care of cancer…” This summit had over 350 guests including Andrew and Esther Schorr, as well as 6,000 others participating throughout the United States. I […]

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In my last blog, I had an aha moment where I realized that I am becoming an advocate. I have had many titles over the years: daughter, sister, wife, mother, military spouse and volunteer. In all of those titles, I also realized that I tend to be a little controlling and driven. But never once […]

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I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in […]

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As we are at the mid-2016 mark, it’s probably appropriate that I update you on a behind-the-scenes look at Patient Power. Perhaps, like you, each year we do some goal setting, and we have a planning retreat near Seattle in August to start. Remember, Patient Power really has no “office,” as the team works virtually […]

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For those of us who are struggling with this beast called cancer, I hope this helps in your search for financial assistance. I have found this disease to be very emotional for me and, as such, looking and asking for a handout is very hard to do, not due to pride (okay, maybe a bit). […]

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Welcome to ASCO—The American Society of Clinical Oncology, and its annual conference.  I covered this onsite two years ago, learning some rookie lessons about comfortable footwear and conserving energy.  Here, at the world’s biggest cancer conference, is often where major clinical trial findings are presented. One significant study result presented on Saturday had the biggest […]

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