Waiting for the Other Shoe

Today I’m in remission and I’m thrilled. It’s been three years of treatment and just last month I actually started running. To tell you the truth, I really hate running, but I felt so overwhelmed with gratitude for the ability to run, my body wanted to run. It was very unlike me as my sister will attest. I’m back to taking care of my family, my hair has grown back and is almost back to normal, absent the chemo curls. Of course I have a completely new perspective on life in general, and I am truly enjoying the moment.

But there is always an undercurrent of anxiety, wondering if (and most likely) when it will return. I just attended my 41-year-old girlfriend’s funeral (she had ACC, an even more rare cancer than myeloma) which was a reminder that cancer doesn’t wait just because you want it to. I’ve had friends and relatives who were emotionally jarred when their breast cancer came back a second, then third time. I wonder if it’s better to think you are in the clear, or better to expect that it will return. Both outcomes do a number on your psyche.

If my myeloma were to come back tomorrow, what would I do? I think I would visit both of my outstanding doctors and get their opinions – they were both magnificent. But I wouldn’t want to stop there. Knowing more than when I started, I would want to know about the most innovative research happening in myeloma – about every possible treatment and potential cure. I would want to know where the best clinical trials are happening and if I’m a good match. Knowing all of this before I relapse is critical. After is too late.

After relapse, the family is in a panic – which treatment to choose, where to live, who to help with the kids, how to give them a sense of normalcy in a world of crisis, and how to cope with it all when you’re under tremendous stress and have a seriously reduced mental capacity while on medication. It’s a terrible time to begin your research.

As a new patient, I want to be able to go online and see all the doctors that specialize in myeloma so I feel like I am making a choice based on solid information. I want a doctor that is beating the “average” 4-6 year life expectancy and achieving closer to 7-10 years or beyond. I want to understand who is doing what research and identify the areas of research that look the most promising. I want to know how to sort through all of the available clinical trials on www.clinicaltrials.gov and match them to my personal profile and my best potential outcome. Right now, all of this takes more than just hours – it takes days or months to wrap your head around all that is out there. All this assumes you are capable and willing to do the deep dive into the research in the first place. I think most importantly, I want to feel like I am making a proactive and personally crafted choice, not succumbing to whatever life is handing me.

I think that I am not the only one with myeloma that wants this. So one of our first projects is to create the Myeloma Specialist Directory to share what we are learning and help other patients find a myeloma specialist that suits their desired approach to treatment. We invite great myeloma doctors to participate. We invite you as patients to invite your doctors. We want to gather as much information as we can, as quickly as we can before we put our life into someone else’s hands.

If you are a Myeloma Specialist, you can submit your listing here: Myeloma Specialist Directory

Here’s to running, remission, research and a little more control when it comes to the other shoe.

 

The Power of the Patient

“You may want to get checked out. It may be cancer.”

A doctor I had visited on vacation was calling with results of a PET scan to check a potential urinary tract problem. What they found on the scan were bones that looked like swiss cheese in my spine and hips. A few days later, I was diagnosed with multiple myeloma. But how could this be? I was healthy and fit, 44 and female; a wife and mother of 6. I eat whole grains, limited sugars, and I exercise. I don’t smoke or drink. I haven’t been exposed to toxic chemicals to my knowledge. Why was I getting a cancer whose patients were mostly male and in their 60’s or 70’s?

A wave of emotion came and went and came again – denial, frustration, fear, hope, a drive to action to save my life and feeling of loss of control as we realized we couldn’t do it alone. What control did I have over these crazy-active cells that were now destroying my bones?

I would need to trust my life with a doctor who would prescribe treatment. I would rely on a team of nurses, lab technicians, counselors who would do the daily work – take the labs, run the tests, hook up the chemo, give the medication and listen. I would need a 24-hour a day caregiver to get through a stem cell transplant. I would need to be driven to my appointments and have someone fix my meals. I would need a friend’s hand to steady me as I walked down the street and back. If I ever loved anything more than life itself, it was having the power to direct that life. Even with a highly supportive husband and family, I felt like my freedoms were being taken away.

But we did have power and choice. Our choosing began. We went to the first doctor we found on our insurance plan. He wanted to start treatment that Friday, but we hadn’t even run all of the tests to confirm that it was myeloma. He was a general oncologist and had a few myeloma patients. We found a myeloma specialist but thought the facility wouldn’t be covered by our insurance plan. We decided to move forward with him anyway and we are thrilled that we did. His motto? “Know everything you can about the enemy.” My husband commented that it was “the difference between a high school coach and an NFL coach,” in his level of knowledge about the disease. Our insurance plan did cover the expensive treatments, which was a massive blessing. We’ve since lived internationally and due to the need for travel, I’ve now been treated by 4 intelligent and competent myeloma doctors at 3 leading US facilities.

This was not our first family experience with cancer. Seven years ago, my brother-in-law died of Acute Myeloid Leukemia (AML). The disease had progressed so far by the time he was diagnosed, he was in the hospital for almost the entire year of his treatment. His last child was born while he was in the hospital and all of his kids were under the age of 10. Brothers and sisters from a family with 8 siblings watched over him (sometimes full-time) charting progress, medications and outcomes. After the capable doctors reached the end of their protocols, we pushed to enroll him in a clinical trial. We know in great, painful detail a patient’s side of cancer.

We’ve learned to push. We’ve learned why the medical model is broken when it comes to curing diseases. It is not a caring problem or an intelligence problem or even a funding problem. It is organizational behavior problem. Curing disease involves a family of stakeholders – patients, doctors, nurses, staff, researchers, and pharmaceutical companies. Each family member adds something unique that drives towards a cure.

As a cancer patient, you have two things no one else in the family has. You have an unsurpassed motivation to live and are playing “beat the clock” to do it. You also own data – valuable, priceless data.

You own the knowledge of your family history, your white count, your potassium levels, how you felt after taking medication, what you ate for breakfast and if you took a walk today. My sister was telling her 3-year-old he was hungry and was therefore cranky. He said, “My body is my body and your body is your body.” He was right. You may forget how to describe what you are feeling at your doctor’s appointment, but you know your body in great detail.

As a patient, you have power. The level of detail you have is something that the best doctor in the most renown facility does not have. If he or she can’t see it, they can’t help do what they do best. If we share it, we get every stakeholder doing what they do best. And it is only through the push by the patient that things move faster. It is a blessing that we as patients don’t have the luxury to wait. How else would we be motivated to find a cure?

In the last 20 years of myeloma research, the life expectancy for myeloma patients has gone from 2-4 years to 4-6 years. Progress? Sure, but not enough for people who want to live for the next 30 years. I believe we can speed up the progress.

So what if you knew which of the 7 types of myeloma you had and mapped your genome? And what if you could see (worldwide) a group of patients that had the same type of myeloma? Or patients like you with the the same genetic indicators? And what if you could see which treatment they used and which had the best outcomes? And what if doctors or researchers from any facility in the world could access that data? Do you think we could collectively find a cure, even if we stumbled on it by accident?

The collective thinking potential is incredible.

This is why we started the CrowdCare Community. We bring patients into the disease-curing family, not as a passive participant, but as a driver of their own care. Please join us to drive to the cure faster.

Yours in Health,

Jenny Ahlstrom

 

Learning Somethin’ About Bees

Three Stings By Shel Silverstein

George got stung by a bee and said,
I wouldn’t have got stung if I’d stayed in bed.
Fred got stung and we heard him roar,
What am I being punished for?
Lew got stung and we heard him say,
I learned somethin’ about bees today.

I know this amazing woman who is the mother of 6 and the founder of a K-12 school. Nancy is truly remarkable and wise. More importantly, she is a woman who knows how to do hard things. She gave me sympathy but not pity when she found out I had cancer. Every time she sent me flowers, an email or a cake, she would say,

When you are ready, I would love to know what you are learning.

She was right about the learning. This compressed time of adversity has been the time I’ve grown the most. I’ve learned that Dexamethasone is great for keeping lots of mental balls in the air, but wears on relationships and nerves. I’ve learned that Thalidomide sucks brain cells and ruins a perfectly good memory. I’ve learned how to cut up a t-shirt and turn it into a turban. I’ve learned that ginger chews and homeade ginger ale help a troubled tummy. I’ve learned that watermelon and butternut squash are your friends when you desperately need fiber. I’ve learned that family is what matters. I’ve learned that I want to serve and help relieve suffering and now I am qualified to do it because I understand the pain.

We’ve started a Forum called What I’ve Learned from Multiple Myeloma.

Please share with the Myleoma Crowd what you’ve learned during this refining time. We will all be better for it.