When setting out on any new adventure, part of the fun is not knowing what you will find around the next corner. Will it be a postcard picture perfect breathtaking cliff top vista? Or will it be just another turn on an otherwise twisty and ongoing road? Will the people you meet be kind and welcoming along the way? Or will they make you want to pick up and move on?

TV shows like “Route 66” and “Star Trek” come to mind when contemplating this. In the former, two guys drive a really cool corvette to some new destination along the fabled U.S. Route 66 in the early 1960s. In the latter, the Enterprise transports the captain and crew to a new planet in some far away star system. In both, our intrepid travelers meet the locals and have some sort of adventure that inexplicably plays out over 60 minutes (actually it is 48 to 53 minutes when accounting for commercials). Ultimately, every storyline ties together with some sort of thoughtful parable. Our travelers then move on to the next locale, repeat, and it’s all good. Unfortunately in real life, it generally is not so neatly packaged.

So it was with my first try at being a patient blogger. Normally, I am very private about health and personal matters, and am even less open about broadcasting these through social media. I guess my perspective is that everybody deals with challenging things on a daily basis, and they really don’t need my burdens. Consequently, this whole blogger thing is way, way outside my experience and comfort zone.

Additionally, and despite having done a lot of public speaking and writing, there always is a nagging internal doubt that what I am discussing will be accepted or benefit those who read or listen. This nagging doubt was really evident when writing and in the run up to posting the first blog entry.

For example, in the context of very public forum, how would people respond to the idea that there are prejudices and negative misconceptions about having chronic cancer? Would you all think I am nuts for bringing up such a sensitive topic? Would you even look at the blog in the first place? Even if you did, would the content be so banal that there would be a collective shrug? Again, more uncertainties and internalized doubt.

One thing I am learning is that having CLL is in part, one uncertainty after another with some more significant than others. Regrettably, life’s journey with CLL is not a 60 minute TV episode. Having gone through all the twists and turns of accepting CLL as part of my life, there were now even more related to talking about this in a social forum. So, all of my nagging doubts about the blog were, and remain, a perfect metaphor for life in watch in wait.

Given the tremendous response and feedback to the first blog, my neurosis and concerns were clearly unfounded. Around this turn on this part of the adventure, I found openness, richness and poignancy in the life stories people shared in their comments. They were all moving and every single one hit home for me. I read each of them multiple times and although I did not get to all of them, tried to respond to each one. I hope you were equally affected. Perhaps most importantly, I did not feel different.

While I doubt any of us came into this willingly, it seems that we truly are a community nonetheless. I am grateful that Patient Power has created a safe place where we can share our thoughts. Based on the overwhelming initial response, I came away feeling that this blog gave some voice to those of us who are in watch and wait. Again, a big personal goal in doing this blog in the first place is helping people. For me at least, your initial responses are edifying, and I can’t thank all of you enough.

A commonality in most of your responses was how we are all trying to live as normal a life as is reasonably possible albeit with a new, potentially fatal “feature.” This speaks to the duality of life in watch and wait. On the one hand, you are trying to go about your day like most other people. On the other, you are dealing with an incurable cancer. As much as you try to ignore it, it is always in the background and colors daily choices.

As evidenced by many of the comments and at one extreme, we face the challenge of integrating CLL into our relationships. For example, who do we tell and under what circumstance? One poster was dealing with the challenge of telling a new or potential partner that they have cancer. What courage it must take to do that! How do we tell our children? Even though my children are young adults, telling them truly was one of the worst days of my life. Several posters spoke to this as well. Another poster said it took three distinct tries to communicate their cancer fight with family before it felt “right.”

At the other extreme, many people literally seemed to just go about their day. One commenter said they choose not to be the “poster person” for cancer at their place of employment. Another said they didn’t want to play the “cancer card.” Given CLL’s heterogeneity, I guess it should be no surprise that every person deals with watch and wait in an equally diverse way.

On this part of my CLL adventure at least, I am glad that I went around the turn. That unfolding view was warm and welcoming! I hope to be in this locale for longer than a 60-minute TV episode, and not have the residents think I am overstaying my welcome.

Thank you for reading and please send your thoughts and ideas.

Always hope. Never quit.

C.J. Chris

Watch nowWhat is it about lung cancer? I know it’s that elephant in the room again, still. From time to time, I get that knot in my stomach when I think about Jillian, especially now, when there is so much going on in this lung cancer community. And it hits me…with that OMG feeling that punches you in the stomach. Jillian was diagnosed at one cancer center but chose to receive treatment elsewhere. So many times I found myself questioning the testing process, the diagnosis and the prognosis. Should I have been like a CSI investigator and watch the chain of all her testing? I sometimes think I failed at the time I was needed to be the best mom ever! OMG!!!

In discussions, doctors talk about the need to bring your tissue samples with you, should you seek treatment at a different facility. That thought took my breath away and the tears began to swell. When Jillian was diagnosed, the doctor assured me that the tissue samples were indeed hers, because they had a “bar-code” assigned to her on each sample, each test. But how did I know that was the case? How did anyone know that was the case? We weren’t there when they took the lymph node from her neck and sent it to some lab. We didn’t watch the chain of evidence so to speak, So when I heard talks about second opinions and taking your samples with you, a fear, a panic set in…and that ominous question arose: did we do enough for Jillian?

I get it. We have to trust our doctors and know that they are doing the right, the best thing for our loved one and us. At 28, with diagnosis, my daughter’s life was almost over—her lifetime cut into shreds. Jillian deserved a second opinion. Even though the outcome was as the same, the outlook and compassion was different. Jillian never wanted to talk about time left, quality of life or bucket list of things she would never get to do. She knew what her doctors knew. What she, what we, didn’t know was, throughout all of this “cancer sucks” stuff  and behind the scenes we were privy to, someone was still looking at her. In thinly sliced bits and pieces, stained and small. Someone was still trying to understand what her DNA, her genome was telling them. What secrets would unfold? Would they reveal themselves now when something could be drug? A new drug? A new clinical trial?

I admit, I don’t know lung cancer. I don’t understand the gene mutations or cellular structure. I know that listening to doctors talk about tissue samples, second opinions that I still have more questions than answers that will ever suffice the alleviate the grief and loss. But I also am reasonable to know that they are doing something on a cellular level to decode, demystify and break lung cancer’s back!

I’m a mom and used to feel omnipotent. I leave that, today to the researchers who are looking inside and outside the box working feverishly to make lung cancer a chronic disease and then a curable one. A part of me still gets very sad and feeling cheated that I didn’t do more for Jillian. But we all have a Jillian and want the same thing. If we could turn back time and accelerate the research into lung cancer—well, we wouldn’t need to talk about it, would we?

And I find that today, now at the 16th World Conference on Lung Cancer they are talking about this and more. It’s global. It’s overwhelming to have so many people from all aspects of lung cancer: doctors, clinicians, oncologists, researchers, advocates and yes, there are survivors all asking similar questions to mine. Looking for answers, leaving no stone unturned. Isn’t that the kind of community you’d want to be a part of?

Stronger than lung cancer,

Ros Miller

Learn more from Ros in our video, Ros Miller: Hope Is Stronger Than Lung Cancer

Patient CaféWe’ve just recorded Patient Café discussion #6 for people living with CLL. Even before all the discussions have been posted, the content has been viewed more than 6,000 times as people “drop in” for a cup of education, empowerment and community. I am so gratified we came up with this innovative and convenient way for patients to connect and sound off and kudos to discussion leader Carol Preston, a CLL patient herself, and the Patient Empowerment Network for acquiring funding. I hope we can produce many more in CLL and then other conditions we cover. I envision many cafés humming all at once and in multiple languages. We patients want to connect!

That desire for connection extends to the increasing number of “town meetings” we are producing. Just in October, there are three with me as in-person host and my wife, Esther, as host for the growing online live audiences. I hope to see my MPN brother and sister patients in Seattle or Houston or online and CLL brethren in Houston or online. Next year we are angling for funding for more events in Houston, Palo Alto, Tampa, Chicago and New York City. Maybe even more. And covering everything from advanced prostate cancer, lung cancer, CLL, myeloma, MPNs, lymphoma and melanoma to name a few.

As you may know, we are streaming the town meeting live. That means you can attend from anywhere in the world and for free. You can send in questions from the comfort of your own home. And we are working on ways the live online audience can connect with others in real time no matter where you are.

We are working on the discussions continuing beyond the town meetings with new communities that we are administering on our partner site, healthunlocked.com. Here you’ll find new discussions for U.S. audiences and soon other country-specific communities.

My personal commitment is that no one should feel alone or uninformed. It’s a tall order, and you can help by telling others about Patient Power and inviting them to join the Patient Power community that’s right for them. As our numbers grow so does the opportunity to win funding to do much more. And everything remains free to the community members.

I am excited about using the ever-changing communications technologies to do more and for all of us to connect in ever-richer ways.  I always welcome your suggestions and hope you can join us one way or another at one of our upcoming programs.

Wishing you the best of health!


It took me a long time to admit to others and myself that I was a cancer patient. But after that, it took an even longer time to see myself as anything else. I’m trying to transition back into normality.

Just a couple years back, I was enjoying the prime life: attending college, living on my own, paying my own bills for the first time, and in charge of my own life. I was in a constant high state with all the freedom I had—and loving the responsibilities.

January 2014, my senior year and last semester, I was diagnosed with stage II uterine cancer.

This was and still is unheard of for patients under the menopausal or pre-menopausal age to have uterine/endometrial cancer. This is because uterine cancer is thought to have a very close correlation with women who have hormonal imbalances, such as women in menopause.

At my age, 21, this diagnosis was rare.

I was many things, a teacher, a student, a daughter, a girlfriend, a roommate, and that random stranger that was able to put a smile on your face. But being a cancer patient wasn’t a label I ever expected to obtain.

By my senior year, I had already had two laparoscopic surgeries to remove the severe endometriosis discovered throughout my lower abdomen, and I had a partial hysterectomy. I was no longer a “newbie” to the medical scares that seemed be the only happening events in my life lately.

I decided to continue in full-time school to avoid losing my full-ride scholarship. I started treatments two weeks later and continued with four rounds of chemotherapy. Everything changed, and my freedom seemed to disappear quicker than my weight did. I felt less and less in control of my body every day.

I’m not sure if it was my extreme stubbornness or my motivation that kept me positive throughout my first few rounds of treatment. But either way, I kept my scholarship and was able to graduate in May; just a few weeks after hearing I was in remission!

But as a cancer patient, I had the support of the world’s best army:  a caring medical team, along with my family and friends.

On paper, it says that I’m better, like I subsequently should be. The treatments have come to a halt, and the concerned phone calls from family and friends have slowed their flow and become more of a seeping drip.

But still yet, I am feeling lost in the transition from Cancer Patient to Survivor now that I’m in remission. My entire world was picked up and turned around, and now I’m spit back out onto the assembly line of life, expected to fit back in and be “normal.” Have you transitioned from patient to survivor? Tell me your experience in the comments section.

Gaining strength from experience,

Eleanor Campbell

Ten years ago I didn’t know very much about the color teal or ovarian cancer. I did go for an annual Pap Test but that was the extent of my knowledge of gynecologic cancers. Since my sister had been diagnosed with breast cancer at the age of 42, I knew much more about pink and […]

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My adventure in the world of CLL started in February 2013, when during a routine physical, my physician noted that my white counts were “elevated.” Having a rather offbeat sense of humor, he was certain that his blood analyzer was faulty, and a second blood test would most definitely prove that. Well, the exact same […]

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This spring, I had the honor of speaking as part of a panel of doctors and patients in Phoenix, AZ, for a one-day melanoma town hall produced by the advocacy site PatientPower.info. Andrew Schorr, a two-time cancer survivor and founder of Patient Power, hosted the event that brought together a local audience, as well as […]

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Trevis Gleason could have dropped into deep depression when he was diagnosed with multiple sclerosis years ago. He was a skilled chef, had a budding career, and a million ideas, recipes and passion. But that’s not Trevis. Despite the progression of MS and the medicines that no longer stop it over the years since diagnosis, […]

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I was reflecting on the heroic ways my fellow patients go about their day and struggle not to be defined or confined by their disease. We all have our secret methods of coping, which—in speaking to my fellow clinic patients—run from changing socks after a night sweat to the overall benefits of chocolate. I would […]

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The other day my hematologist said to me, “You’re boring.” That may be the nicest thing anyone has ever said to me. His “compliment” came nine years after I had been diagnosed with CLL, chronic lymphocytic leukemia. On this visit, my blood numbers looked nearly perfect. I could exhale for the next few months until […]

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