The first day of the “work” staycation

I am hesitant to call this a “staycation” because I am doing anything but relaxing.

I got up before 8 am and started working right away. I realized one of the works I have been working on the last 1 month or so had a significant flaw. Naturally, I fumed and my agitation that started yesterday heightened again.

I was so pissed and lost my hope in doing a good job that I contemplated about quitting this line of work and leave here for good. Oh, how lovely my life would have been then? (ah, no really… it would come with its own problems that is for sure, but at that time the idea of leaving these behind looked so appealing, so lovely…anyways).

I talked to my family and it was great to know that they were well and sound. Yet I think with my toxic mindset, I negatively affected their morale. Boy.. At least I felt a little bit better. But, at what cost, I should ask. I will apologize tomorrow…

After that fiasco, I realized that I may not be able to solve that flaw just yet, so I moved on with other tasks that I must be taking care of. Two of them have moved quite nice and easy. I must say sometimes being pissed off or feeling inadequate makes me quite productive. After all, if there is one feeling that makes me feel better is to be able to move/progress something.. Anything! 

I want to remind myself that all hurdles are an opportunity to grow and do better….

I want to think that realizing that work of mine was bad earlier than later was actually a great thing for me overall…..

I want to believe that whatever I am going through right now will pass and I will feel good again…..

As my sister said today, there are so many insoluble and serious problems in life that these kind of things do not make sense after all.

I want to feel these.

I want to.

Please GIF - Find & Share on GIPHY

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preferences for social activities

I have just declined a social invitation from a nice couple that I happen to like. I have met with them last week for a dinner and I will be meeting with one of them for a breakfast this Wednesday. The social that I refused to take part was scheduled for the next weekend.

This is the second time that I said no to these lovely people. Seeing  them rather frequently is the first reason for my refusal and the restaurant choice is the second. The place they have chosen is an expensive diner with food that does not appeal to me. Honestly I have no reason to spend 90 bucks on something that does not even excite me.

But the first reason re; seeing them lately too frequently is something that I always knew but never voiced before. Well…. It is true. I live alone and am perfectly happy with it 99.9% of the time. When I see people rather frequently I develop negative reactions. I cannot help it.

At least I have been true to them and to myself.  I really like these people. Hopefully next time we will eat at my place.

These friends of mine seem to get me and do not push it, which is awesome. I had friends in Toronto who would get quite upset if I had declined their invitations. It was so weird, so ridiculous that eventually our friendship has ended. I have not talked to them for quite a long time. Honestly I could not care less. You cannot force people to socialize with you whenever you want it. See, I am still angry with those people.

Anyways; I am thankful that I continue to be assertive and say “No” as necessary and I have great friends who totally get it and still be cool with me.

I feel good about myself and lucky 🙂

unhappiness

poem

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sometimes we must accept that

we do not have all the answers

and we cannot get everyone’s circumstances

in these cases;

empathy has the softest voice

and silence has the sweetest tune……

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All rights reserved.  © https://lifeasiinterpret.wordpress.com/

PS: the interesting thing is that I wrote these words in anger as a response to a comment on one of my posts about unhappiness. I hardly get upset about the comments on my posts, yet in this case I had taken the comment as “blaming” me for my unhappiness, which is ridiculous. Nobody wants or plans to be unhappy. Right?

Right.

Cheers! 🙂

random thoughts

I have been quite relax lately about my budget; yesterday and this morning I have taken the cab to the office (rather than walking or taking the bus).

The reasons were the followings: yesterday it was raining so I decided against walking; and today only because I felt like I needed to pamper myself and it was better to be at the office right away, as there were many things that I would like to work on.

There was a mental judo, of course; I was beating myself for getting relax with money, but then something inside me said “You only do what you think is best for you. Tomorrow is another day. Do not take this as a complete failure“.

How awesome to be able to say this and even more than that, to be able to hear them among all the chatter that goes in my mind 🙂

I remind myself that every once a while, things will not go ahead as I planned or wanted them to be. Every once a while there will be other things more important than my cab fare. I know that I can start taking the bus tomorrow, if I do not feel like walking at all. And I can go to bed early to make sure I will arrive my office early, too, so that I will not feel the push in the mornings.

Even though I do not make it tomorrow, I will try it later again.

I will be gentle on myself. That is my promise; why to break my own heart?

Be gentle to yourself.

tomorrow is another day

One of those days that I feel meh.

My hands are cold for some reason and my appetite is not here, either (which is very unusual..).

It was actually another good work-day with many things learnt, discussed, and resolved. Plus, I have the night to myself, where I can relax reading, writing, watching TV, or listening to the music. I am not sick, all is well in my life, yet I just happen to feel this way.

Ok.. at first I screened my mind to find a reason for this feeling and could not find anything particular. So, it is not something that I know or remember that makes my mood a little bit down now. There is no benefit in resisting to this feeling; I just gotta accept and be at peace with the fact that sometime it feels all right, sometimes not.

Tomorrow is another day; it may turn out to feel just fine 🙂

I can only be compassionate and understanding

Since I wrote this post a couple of days ago, I have been thinking; there is so much truth to it. Yes, “there is a limit to what one can undertake”.

I have chronically low levels of energy; it has not been like this all the time; but in the last 5-6 years, this has been the case. Whether it is a natural change in the body/metabolism due to middle-age, or I have been undertaking too many work-related activities with too much of responsibility, or I have been living in geography with usually grey skies and icy, snowy, or long winters, I do not know. But, I walk less, I exercise less, and most importantly I want to do less (except the work activities).

What do we do when we have many to take care or think about? We all have lives and people we care about; the majority of us have houses and other properties to clean, organize and take care of, work and financial needs and worries are there, too. Include your health, hobbies, and wishes and plans for future. How do we deal with too many thoughts? Issues? I personally will shut down some of the issues to deal with those which needs to be taken care of immediately or that carry some kind of importance. Or, just to keep my mind occupied by other activities to give my mind a break. That means, the rest will remain somewhere out there or in my mind to be dealt later.

I can only be compassionate and understanding when the issues not dealt with come back more problematic, as I cannot deal with all. It is okay to shut down, relax, and recharge when it is needed. It is okay to prioritize and it is okay to err in prioritizations.

This is not “losing”, this is not “giving up”, this is not “not fighting up”.

This is acceptance. This is being human.

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.

joy journal – March 8, 2015

I cannot think about a better way to continue feeling better than writing the things I have been grateful for lately. I do not know what I will write right now, but I know that once I intend to write them, I will find them, I will remember them. That is in the simplistic term an effective therapy for me. Here I start;

1. I am grateful for my family and friends; for their love and support, their well being and health. I love them dearly.

2. I am grateful for today being a sunday. I have maybe another two hours before I go to bed and I can enjoy every minute. This being said, I can enjoy any minute any time; it is my choice and my right.

3. I am grateful tomorrow is a work day – one more day at home would get boring for me. I have the choice of taking a day off if I feel like I may need time for myself, or do not want to be in the office. That freedom feels good.

4. I am grateful for gathering myself up after the depressive day yesterday. I am not sure what happened or how I managed it. It did not happen because I tried something, some way, some strategy (such as meditation, talking to friends, or so); it just happened. I feel like my mind helped itself. It feels good.

5. Despite all issues, worries, or negative things going on in my life, I am aware that I am not the only one, so I feel some kind of relief. Many people have even more dare issues to deal with; sickness, grief, financial troubles, etc. I know I am not immune to life’s challenges. I know that I will go through them like anyone else.

6. I am grateful that I have food, clothes, furniture and a house to live in.  I am thankful that I can afford all of these.

7. I am grateful that this morning at my favourite cafe, instead of working i read a magazine. What a nice change! And change I like. Routine gets boring after a while; seriously does. I need change; different places to see, different colours to wear, different opinions to hear.

8. I am grateful for my blog, computer, and the internet connection that makes this writing possible.

9. I am grateful that I realized I need a break. yes, I do. how wonderful it would be if I could afford a mini vacation, a week maybe away from this cold winter and every day routine.

10. I am grateful that I support myself fully and I am capable of facing things, however scary or annoying they may be. I am thankful that I appreciate myself and thank myself.

11. I am grateful that there are some nice voices, smiling faces, supportive and compassionate souls here and there. it is nice to hear someone offering that they can listen to me if I want to talk it happened here yesterday; many thanks you 🙂 ). I am grateful that the waitress at my favourite cafe yesterday get my coffee ready before I asked. I learnt her name and I have thanked her. That was a high-energy experience. It re-charged me, gave me hope, and energy. Thank you Jessica. I hope when you need it, you will find many people around you to support you and make you smile, like you have done yesterday for me.

12. I am grateful for not being agitated right now; a little bit maybe but not too much. there is quite a relief in accepting things as they are and letting wishes, plans, and any other thing that do not work and bothers me go. That is a great feeling. Some may say it is a failure, I say I am liberated. Point of view.

13. I am grateful for the daylight saving time being started (or ended; I do not know which one) today. I have not enjoyed losing one hour today, but you know what; this one extra hour-long daylight in the evening gave me hope. this one extra hour of light made me feel like, even though it does not show its face yet, spring is about to come. a couple of more months and then things will be brighter. It feels good.

14. I am grateful that while I was depressed yesterday, I did not whine to anyone and reduce their energy by it. All needs their energy to go through their lives. I am happy that I have not negatively affected any one.

15. I am grateful that I realize I take too much to do and along the way get overwhelmed and inefficient (as I have been lately). It is time for me to say no to certain things. It is time for me to stop during the day and do something different. As a matter of fact, that is a great idea! why do I not have a “Change of the day” section here and write down things that I did differently!! That will be awesome! Great idea! even a small thing can make a difference in my life. I am grateful that I have come up with this idea right now. Another great thing about writing my joy journal! :))))

16. I am excited for the “Change of the day” idea and I am grateful for that. Excitement is a great thing.

17. I am grateful for making a list of things that I have done as a change lately: here is my short list:

a) starting a blog ( a few months ago)

b) writing poems and short stories (I hardly did before I opened this blog)

c) buying less groceries

d) eating more carrots

e) drinking tea at home, even for time to time

f) starting yoga and then taking a break from it before it became a routine activity

g) planning to start yoga again

h) starting to work at my favourite cafe

i) not visiting my favourite book store – now I actually wished I had; it is such an exciting thing to go through the books, buying them and bringing home, and then exploring them. Due to winter I could not walk there, but you know I will start sometime soon. So it is great.

j) changing my tooth paste

k) changing my laundry detergent; it smells so good I am very happy about it.

l) not shopping large – I enjoy shopping, buying things that I will need, especially if they are on sale. On top of the things that I need, I also purchase things that will feel like a present to me; a pack of pens, some other little stationary items, something colourful. I have not done that since the holidays because I have everything now. This probably saves me money, but at the same time I should mention I missed that feeling of shopping!

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.

arguments and relationships

Arguments can either kill the trust, rapport, or the love between two people or it may strengthen them.

I am of open and sincere communication as much as the other party allows. Let’s face it, not everybody opens up well enough. Understanding each other is essential in relationships but it can be quite limited because of un-openness leading to misunderstandings, not clarifying issues/meanings, and conflicting or changing priorities, life events, or feelings. Or just to protect ourselves.

Arguments sometimes is inevitable when the misunderstandings stack up tall or our feelings are hurt for some other reason. At those times, it is difficult to erase the ego or the agitation and to focus on understanding the opposite person and to express ourselves. Sometimes, though both listening the other person and communicating ourselves can help to open up, clear the air, and resolve the issues.

More importantly, we can understand ourselves better in such situations; are we constructive? are we confidently present our case and stand by our opinions/values/actions? Do we have dignity and respect? Do we have confidence and determination to stand tall if the other person is at fault?

Have you ever noticed and liked your behaviour/attitude after an argument, whether it turned out to be resolving argument or not? then you know what I mean.

Have you understood the other person better and realized what might have gone wrong in  your relationship? then again you know what I mean.

being peaceful, kind, and respectful while also being confident and expressive works well sometime. There are two people in the argument, in the relationship. All go both ways.

peace and cheers

has anyone ever said “you two were from different worlds?”

A couple of days ago I am having a conversation with someone and s/he says “I wonder whether we are from different worlds”.

I take it as an alienating statement and as if that person is pushing me away. Upset, I make my point, and that person says s/he meant something else, without telling me what it was.

I wonder; what would you understand out of that sentence?

I really am trying to understand.

thank you

You can not know what the other person’s life is

They say that until you get your own child, you would never know how a parent feels or how difficult is the parenthood.

I believe in this.

It is because I think we understand something better when we directly experience it.

I hence never claim that I understand how parents feel.

Though, I may be able to understand or relate how singles, people who do not have kids, and middle aged citizens can feel.

So next time before assuming you know what a single or childless person feels, thinks, or faces in life, stop yourself before saying silly things, such as;

“you do not have too much responsibility; you only take care of yourself, yet I have to take care of a family”

“we bought a house, what are you waiting for?”

“you are one person, you should be saving money, good for you!”

“we called you the other day, where were you?”

kind of things.

You can not know what the other person’s life, finances, troubles, or schedule is like. Not everybody lives your life.

Stop it.

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