random thoughts

I am watching a movie on Netflix that made me laugh aloud 🙂 It is a lovely experience.

It is also a beautiful Saturday night. When I was young, Friday and Saturday nights would be the best time of our lives. We would be free; get up anytime we want; and meet with friends and family.

Then would come the Sunday.

Sundays at that time were quiet… Most stores would close and traffic would be often silent. People would mostly remain at home, and get prepared for the next day, Monday. Sunday was the day of homework, studying, ironing clothes (yes, we have and still do iron our clothes, except that I became acclimatized to North America and except for job interviews, I do not put my hand on the iron).

So Sunday, like for most of us in North America, is now a fine day for me. I am still free; can get up anytime I want; and I can see my friends normally. Or shop. Or work.

What matters is that it is yet another day full of opportunities and comfort. So, I hope we all will have a pleasant Sunday tomorrow.

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Going back to the beginning of this post, I like comedy movies but hardly watch them. I now realize that this is odd.

As someone who has a tendency to get anxious (or depressive), I actually have an appetite for mystery and action movies. Sometimes I also watch horror movies – surprisingly they help reduce my anxiety if I am within an anxious episode. Drama is not for me, nor documentaries.

None of these, however, explains why I do not watch comedy movies more often, laugh, and have a chuckle or two every once a while. They absolutely lift my mood and as someone who laughs from the belly, each laugh makes my internal organs massaged and feel better (or, at least this is how I interpret the situation. I am sure thought it at least relaxes some of the muscles).

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Sometimes it is easier to not try whatever is better for my mood than continue with status quo.

Do you also feel the same way? “The effort” required to feel better (in this case, finding and choosing a comedy movie) may be discouraging. I was reading a blog a few minutes ago and our thoughts are kind of similar. The good thing is that both my fellow blogger, Snowbird of Paradise and I have found recently something that make ourselves feel better.

As she said, let’s not discouraged by the effort needed to feel better. We all have the same vulnerability to feel down. It may be hard to put the effort solo, so, let’s support each other, even virtually, even every once a while.

Let’s feel good, friends. Let’s feel good.

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random thoughts

This was another great work day; I am very grateful.

Tomorrow is off for us, as it is the Remembrance Day here in Canada. I have plans to meet with a couple of friends and then continue to work at home. That sounds good to me 🙂

Working, being kind to others, and being efficient feels good. Today, I have helped 4 trainees with their tasks. I feel like contributing to their development and moving the work ahead. They will do amazing job.

Young people are great; they have such great potential.

There is also a generational differences. For example, I still need to print out and read and work on the documents; they, on the other hand, work on the monitor. Better? Worse? I do not know. Whatever works for them I guess. I sometime envy this preference as I feel like consuming too much paper. Poor trees…

Young people also are easy to adapt to the changes and develop themselves technologically. One good example is how much they know about computers and programming languages. I can learn these too, but I will need a lot of time to do so. Well done youngsters; keep going.

Seasoned people like myself have experience that can help them develop themselves better. For example, today I was at the presentation rehearsal of one of the team members. He is good, and will get a lot better with the tips I have shared. For instance, to keep eye contact with the audience, not to turn our backs to the audience (while showing a point on the screen), hand gestures, body movements, and voice level and changes on the tone (all help to keep the audience’s attention on the presenter), having clear not decluttered slides, etc. I also helped with the sequence of the slides and animations to introduce points separately on a slide; he seemed to understand and like the feedback. How nice of him 🙂

I am hopeful about the next generations. I once was one of them, Now I am seasoned and old generation. We have a lot to learn from each other and the dynamism and energy of the young generations and the expertise and experience of the old generations make a great mix.

Life is good 🙂

random thoughts

It is Friday 🙂 lovely and sunny. Could not ask for a whether-wise better day. The forecast for the weekend is amazing as well. I am planning to clean the yard, specifically some unwanted growth here and there. That will feel good.

I had a very unfruitful meeting in the morning about a new project I was developing. I need support and the type of support I can get from them is not useful. There are so many black boxes here and there that it bothers me; some information is available to only a small portion of the people. Would it not be better if it was accessible by everyone? At the end these programs are there to support everyone (they say), but when comes to action, nothing much. Sigh.

I am frustrated and although I am feeling on the edge (nerve-wise), I know it is also good for me. I have been reaching to people to get their support and learn from their experiences. It is now at a stage that I cannot go further with them or without them. Time for me to take the action and then evolve from there. Inaction is the thing that I dread most right now and interestingly my frustration elevates my energy higher, not reducing it.

End of waiting and being dependent on others. I can do this, this way or that way. Better than not moving at all.

I said it. I better act on it.

feeling like writing

Many things have happened lately; some of them very positive and thus excite me, and some of them continuous issues, and thus worry me a little bit.

That is allright; I am welcoming all. No resistance to negative issues or worries. That lessens their effect on me. Additionally, I feel like I can ask for opinion and help more easily lately, which is a positive development on my side.

Work is going well. Today, I started to gain some momentum, which is good. I need a new priority list to start fully taking care of the tasks and projects. The positive, uplifting feeling thanks to the new office and the new building continues. I am getting lots of support from work regarding my new projects and some of the issues to be resolved, which is also awesome. I am grateful.

House is allright, though the crack on my wall seem to get enlarged a little bit. I will monitor another week and then take actions. It is better be fixed before the late summer. I accepted it as a challenging issue that could easily depress me. It actually did for a while, until I figured out what to do. Even describing it was a challenge at the beginning. Now, I am improving in terms of controlling my emotions. I noticed as long as I know what to do, I can deal more or less effectively.

There are financial consequences to me as in addition to the wall, the foundation, the hardwood floor need to be broken and then fixed and the walls need to be re-painted. I am hopeful that we will be able to find floor material and paint similar to what I have right now. Of course, once the walls are opened, I have no idea what else to fix can be found, which means additional worry and financial hardship. Let me hope that this will not be the case. After I fixed it, I will sell the house within a year or so.

Though my mind is turbulent, I remind myself that life is full of lessons learnt and opportunities. I am sure life will bring me the best after that. And I will do better in my decisions, the way I deal with issues, the way I see myself and life as a whole.

Hope is  a great thing.

Thanks for sharing your stories

Have you ever surprised yourself with the ways you dealt with things?

I am an antsy, reactive kind of person. Upon the occurrence of an issue, I have to assess the situation and then take the necessary actions.

Some people call me impatient: I happen to take the actions right away, rather than waiting; I think there are two reasons for that; a) as issues arise almost everyday, taking care of things right away is the most effective way (before I forget it or before other issues to deal with emerge), and b) unresponded issues almost always come back stronger. So, they can call me impatient, but I will do my best to take care of things as soon as possible.

Usually the issues, assessment, and deciding upon what to do are also stressful things; I often find myself experiencing the heaviness of the prospect and the stress coming out of it. Thus, my regular reaction to an issue would be an immediate “antsiness”.

Well, lately I have had some issues to deal with and I surprised myself by not feeling too stressed. I am not sure whether I accepted the situation as it is and effectively dealing with it, or I have been to similar issues before so I am more experienced in dealing with things. Maybe I have confidence, maybe I think I am not the only one in similar situations.

Not feeling isolated by thinking that the issue is specific to me (taking the “why me?” question out of equation) is helpful. Maybe that is why I am actually okay with reading the self-help books. Whether they are about our feelings/plans about our lives, interpersonal relationship, healthy-related issues, or work.

There is some kind of relief in this: we are not the only one going through life, with all the ups and downs.

Thanks for sharing your stories.

We cannot be not knowledgeable about cancer and its impact

A few of my posts are about cancer (e.g. here and here).

I had mentioned earlier that personally and professionally cancer has been a part of my life.

I read about cancer a lot; I learnt most about it by reading the posts by cancer patients, survivors, caregivers, or advocates. I learn how it may feel to be diagnosed by this disease, how the patient or the people around them feel, think, wish, and do. Or cannot do. How they are treated. How they wish to be treated. What treatment options do they have? How do they go through this individual journey? What works? What absolutely do not work? What is palliative care? How is it different than hospice care?

In Canada, according to Canadian Cancer Statistics 45% of the population will be diagnosed by cancer and 25% will die because of it.

These numbers are huge.

It can hit you.

It can hit me.

It can hit someone next door.

We know that there are some factors associated with it; for example genetics in some cases (such as BRCA1/BRCA2 mutations), or environmental factors, such as smoking or viruses. Science serves its purpose here.

What we do not know is how it affects persons and how we can understand and support those individuals or ourselves as individuals, society, or government and non-profit organizations. How would you support yourself or others if you did not know the needs and experiences of the patients, their caregivers, and others?

As a matter of fact, why do we not know about these? Seriously. For such a common disease, why is this lack of awarenesses? Is it because we prefer to filter this information out (it is scary I know and we may not want to think about it), is it because it is not even out there?

So far, I have seen only one channel of information valuable and constantly growing; the voices of cancer patients, survivors, caregivers and others affected by cancer. That is why the blogs, posts, tweets by these individuals are so important. They are doing this huge work to get the words out. Listen, understand, and support if you wish.

Cheers.

A powerful post by Janet Freeman (@ Gray Connections) on cancer and patient empowerment

There is a great post on social media and cancer patients’ perspectives and empowerment by Janet Freeman at Gray Connections.

The post can be found at http://grayconnections.net/2015/02/20/epatients-on-the-front-lines-precision-medicine-the-fda-and-me/.

With Janet’s permission, I have also copied and pasted it at the end of this post.

Cancer touches my heart personally and professionally. I have been hearing about “patient empowerment” and “patient involvement” in decision-making activities on cancer care, cancer research, and implementation of health policies. I had, however, never seen how much the patients could directly improve things (e.g. by supporting each other and sharing knowledge) and drive the cancer research field by making links with researchers, funding agencies, and being an advocate for each other so successfully at so many different levels.

Until today.

I am hopeful that there will be more advocates, like Janet and many others, for cancer patients.

I am hopeful that one day cancer will stop to be stigmatized and we will be able to have an open communication about it without judgement and with appropriate level of empathy and understanding. I hope one day, cancer diagnosis will not be used against cancer patients.

Thanks again Janet  for letting me to share your post.

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EPATIENTS ON THE FRONT LINES: PRECISION MEDICINE, THE FDA, AND ME

On February 19, 2015, I was an invited patient advocate speaker at the 11th Annual Moores Cancer Center Industry/Academia Translational Oncology Symposium. My topic, “EPatients on the Front Lines:  Precision Medicine, the FDA, and Me,” explained how cancer research could move faster and be more successful if researchers, pharmaceutical companies, and the biotech industry would collaborate with patients early in the trial design process.

You can see my slides here:

Here’s the text of the speech, along with the links on the slides.

# Slide Speech
1 Title Thank you for inviting me to speak to you today.  I’m going to share a view of precision medicine from the patient’s perspective.  If I seem a bit tense, blame it on the PET scan I’ll have 4 days from now.  I’ll post the speech on my blog tomorrow, so you don’t have to take notes.
2 Genome Scarf This is the legacy of an epatient.  It’s a genome scarf. It represents the chromosome 18 base pair sequence of colonrectal cancer patient Jay Lake.  Jay was a prolific science fiction author and my friend.http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/
3 Genome Scarf and Jay pic Jay was example of an epatient:  a patient who is Equipped, Engaged, Empowered, and Enabled, whether or not they’re online. In 2011, after several surgeries and chemo regimens, Jay was running out of options.  Friends told him about genomic sequencing and helped him research clinical trials. The science fiction community crowdsourced the funding to sequence and analyze Jay’s personal and cancer genomes. Jay shared his data with NIH researchers for his immunotherapy trial, and with Harvard’s open-source Personal Genome Project.  http://www.youcaring.com/medical-fundraiser/sequence-a-science-fiction-writer/38705
4 My journey-Diagnosis Like Jay, I’ve pursued cutting-edge scientific research in hopes of living longer with metastatic cancer. I was diagnosed with Stage 3a non-small cell lung cancer in May 2011.  I never smoked anything – except a salmon.
5 My Journey-Progression 1 After a month’s delay to treat pneumonia, I had concurrent chemo and radiation. My primary tumor and lymph nodes all responded. Two months later, a PET scan found a new hotspot on my collarbone. A biopsy confirmed my cancer had progressed.  Since I had severe radiation pneumonitis, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone.
6 My Journey-Progression 2 I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung.  I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months.  My oncologist told me I would be on chemo for the rest of my life.
7 My journey-Patient as Participant However, I wasn’t just a recipient of care. The information I learned in the Inspire online lung cancer community enabled me to become an interactive participant.  From other epatients, I learned to ask for my data, including radiology and pathology reports.  I also learned more extensive molecular testing was available at other facilities, and arranged to have my slides sent to the University of Colorado Hospital for a 10-oncogene panel. Unfortunately, all tests were negative.
8 My Journey-ROS1 & Trial Here’s where the tone of my story changes.  An online patient told me I fit the profile of patients who had the ROS1 translocation–relatively young, adenocarcinoma, neversmoker, triple negative for the most common mutations.  He sent me the journal article of early trial results.  After my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test.  I gave permission to use my remaining slides.  When I learned my cancer was ROS1 positive, I enrolled in the crizotinib trial in Colorado.
9 My journey-NED Thanks to precision medicine and the online lung cancer community, I’ve had  No Evidence of Disease for over two years. I’m not cured, but life is relatively normal for now–if you ignore the scanxiety every 8 weeks.  I chose to enroll in a trial for treatment in hopes of better option than chemo forever.
10 Smart Patient LC Trials Chart Epatients are very interested in the treatment options available in precision medicine trials, but sometimes we have trouble finding the right ones. New trial finders–like this format created with input from epatients–can help patients find the right treatment at the right time.http://www.smartpatients.com/lung-cancer/trials
11 Purpose of Clinical Trial For clinicians, researchers, pharmaceutical firms, and industry, clinical trials are scientific experiments.  For epatients, clinical trials are treatment. Clinical trials are hope. By collaborating with epatients early in the design process, clinical trials not only can recruit more patients–they also move cancer research forward in ways that are meaningful to patients. Here are some examples.
12 Life Raft Group One of the earliest examples of patient involvement in clinical trial design comes from the Life Raft Group.  In the year 2000, gastrointestinal stromal tumor patients involved in the early Gleevec trials began sharing their experiences online in ACOR. Now Life Raft Group has the largest patient-generated clinical database in the world, and is driving research on GIST genome sequencing and drug screening.  http://liferaftgroup.org/
13 LMS Direct Research Foundation Another example of patient-driven research is the Leiomyosarcoma Direct Research Foundation.  LMS is very rare–only 4 people in 1 million have it.  In 2004, over 800 of those patients were members of an ACOR online support group.  One group member read a journal article about a GIST molecular study, and emailed the researcher to ask “What would you need to study LMS?” The answer was “tissue samples”  Patients recruited 500 donors from the online group, collected  slides from clinics, deidentified them, and gave them to the researcher. The Stanford lab has since identified several molecular subtypes of LMS as well as potential drug targets, and published nine journal articles in its first four years.  Key elements of this successful research collaboration were a motivated online patient network and a researcher who listened to those patients and trusted them as collaborators. http://www.lmsdr.org/stanfordu.php
14 TLS protocol crowdsourcing Technology is providing new ways to incorporate the patient voice.  In December 2012, the FDA cleared an Investigational New Drug Application (IND) for a multiple sclerosis therapy.  What’s remarkable is that the clinical trial protocol was the first ever developed with the aid of global crowdsourcing. That helped define primary and secondary endpoints, inclusion/exclusion criteria, and remote monitoring strategies for tracking patients. http://dev.transparencyls.com/
15 ALCMI Young Lung Study 1 Patient networks and online technologies are also driving research for the most deadly cancer: lung cancer.   Currently 3-6 thousand newly-diagnosed lung cancer patients in the USA are under the age of 40, typically athletic never smokers.  The patient-founded Addario Lung Cancer Medical Institute designed a study of the somatic and germline mutations that might be driving the cancer in these young patients. The study is unique in that it allows patients to enroll either at a study site or online. It also provides genomic profiling data and treatment recommendations to patients as well as physicians.
16 ALCMI Young Lung Study 2 Because this trial was created in response to patient-identified needs and included the patient voice in all phases of trial development, it accrued 30 patients in the first two weeks.
17 Petition to FDA Patients, clinicians, and researchers can also collaborate on regulatory issues that impact clinical trials.  While working with a laboratory director at the University of Colorado, Dr. Dara Aisner, I realized that patients like me who had a genomic cancer variation might be unable to access essential testing under the FDA’s proposed regulations for laboratory developed tests.  By collaborating with medical professionals, I was able to help lung cancer advocacy groups submit comments to the FDA, and draft an online petition that collected over 700 signatures in less than three days. You can still sign the petition, by the way. https://www.change.org/p/protect-patient-access-to-precision-medicine-tell-fda-to-withdraw-proposed-ldt-regulations
18 CTTI The Clinical Trials Transformation Initiative, which seeks to increase the quality and efficiency of clinical trials, recognizes the patient voice must be included when defining the precision medicine landscape.http://www.ctti-clinicaltrials.org/home
19 Where to Find Epatients If you’re interested in finding epatients for collaboration, there are many places you can look for them.  Here’s where they may be hiding.

20 Obama Quote When President Obama announced the Precision Medicine Initiative, he said:“Patient advocates are not going to be on the sidelines. It’s not going to be an afterthought. They’re going to help us build this initiative from the ground up.”  He recognized the importance of including patient voices early in the design process. To be successful in the age of precision medicine, oncology researchers must collaborate with patients.
21 Thank You I hope I’ve encouraged further collaboration between cancer epatients, researchers, and industry. It will create faster paths to cancer cures.  Thank you for inviting me to share an epatient perspective at this symposium.

The life with cancer

I have read quite a bit about the cancer patients’/survivors’ experiences on the net.

I want you to know I admire your courage; the way you handle your diagnosis, treatment, all the changes and worries about yourself, your loved ones, and your future. I also understand your frustration with the doctors, nurses, or medical care as a whole that fails to recognize, acknowledge, listen to, understand, inform, or treat you as you deserve.

I admire the fact that your life, your body, and many things in them change so fast, so profoundly yet you keep going. I admire the strength you have; physical, emotional, and psychological. I love the fact that many strive to raise awareness about the issues around how cancer patients and survivors are treated, what they experience, and what further we need to improve.

Cancer affects all of us; it is just a matter of time for many of us. It is the patients, survivors, and their caregivers who make us see the life with cancer so sincerely, openly, and honestly. When we need help and support, we know where to find it. Thanks for sharing your stories.

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