all the good things – check

It has been sometime that I have noted down my gratitude.

Believe or not, they are right when they say that “it is the little things in life that makes a difference.”

But more importantly, since there are so many “little things or experiences” that are available to us every single day that by just reminding ourselves them and by being grateful for them, it is possible to feel good without needing a huge life event, a lottery win, or a miracle.

Try it yourself 🙂

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I am grateful;

  • for sleeping well and getting up without caring for what time it was – check

honestly, when was the last time you got up only you wanted to get up? For me the last few days were exceptions – other times I always had work to do, an office to go to,  house chores to do, a bus to catch, etc. It feels amazing to sleep knowing that you can get up whenever you want and when your body feels it just right

  • for enjoying my morning coffee – check

this drink is the best thing to smell in the morning!

  • for speaking to my family and my uncle, who has recently been diagnosed with cancer – check

my uncle sounds good. His wife sounds hopeful. Or, maybe they are just not aware of what this disease and its treatment course are like. They show little concern. Not sure this is just a visible mask they put on. Nevertheless, I enjoy seeing them upbeat and well. My own family, on the other hand, is quite demoralized by this diagnosis. I try to keep contact and support. One day at a time…

  • for walking and seeing the first flurries of the year – check

we always get the first snow around this time of the year 🙂 I love that white fluffy stuff. It is such an innocent thing. Cannot wait for the first serious dump of snow 🙂

  • for eating a healthy and hearty salad – check

I have eaten too much yesterday, with a lot of junk food…. this shows on my face, which is puffy. I know that I must be changing my relationship with food, especially with junk and easy food. When I am presented with food, I cannot help but eat. Not always, but you know, I am tempted. So even though I steadily and slowly lose weight in my own routine, whenever I travel, eat at airport or at professional meeting meals/snacks, go out for lunch or dinner with friends, am offered a treat at the office, or go out for shopping, I find myself either wanting to eat or eating. I am trying to be mindful of this pattern now.

  • for appreciating the moment and taking everything light and joyful – check

it is strangely beautiful that when you allow yourself to just do nothing and immerse yourself in the feeling of freedom (to do nothing), positive feelings start to fill your heart and mind. Everybody should take “freedom weekends” like these! I certainly must 🙂

 

Have a great Saturday everyone!

 

 

 

 

all the not so good things

Life is not all about feeling the positive, right?

Sometimes we must also face the sad, negative side of it.

Especially if it relates to people we care about.

Looks like my great uncle has been diagnosed with cancer. He will visit a specialist this week.

It broke my heart as he has been an important figure in my life. But I also know that he will be fine – he is in good health otherwise and has no other comorbidity. My family is experienced with cancer diagnosis and treatment, so is providing support, information, and access to specialists.

However, I also have a family member who has psychological issues when it comes to cancer and cannot handle this well . She supports my uncle and his family, but she is bored and down. Hope she will find a way to move to a better mental state soon.

I am here and away, and cannot do much other than thinking about and calling people.

Life is… well, life is brutal sometimes.

I am positive that my uncle will thwart this off with proper medical care. I am grateful for feeling this way and believing this full-heartedly.

when death baffles, again and again

I just learnt today that someone I know only through blogging has died of cancer this weekend. She was young (around early 30s), with a husband and a little son. May she rest in peace.

She was always open about the encounters with life about first survivorship and then being a terminal patient. My understanding was that she was diagnosed with breast cancer, treated and was on remission, only tho find out later that she now had multiple metastases in her body. It was frightening to hear the news for me. I had met her when she was on remission and I never thought that she would become terminal. But she did.

Still in that situation, she kept her chin up and her ordeal open for everyone to learn from. She was so positive and upbeat that it was again hard for me to realize that she was terminal. In one posts, she said “make no mistake, I am dying“. That broke my heart and I guess I started to take it a little bit more serious then. Communicating with someone whose days on this life is limited is a strange feeling…. Thinking that next day, next week, next year, this person will not be here…. How fragile and strange life can be, right?

Right.

Another thing that broke my heart was when she said that her doctor would be removing/or not removing (cannot remember which one and it does not matter really) her breast fillers (which she always hoped that one day would help with reconstructing her breasts). I thought she must have been heart-broken…. How did she stand so tall in the middle of all of these frustration and disappointment? She was a strong girl, but goodness knows, this could not be easy.

And a couple of weeks back, just like that, out of blue, we learnt that she was hospitalized, in pain, in hospice care, and having trouble with eating/feeding tube. And today we learnt that she had passed out last weekend.

I do not know what to think, what to feel for. I am certainly sorry for the family and friends. But I am feeling very weird, very weird.

She was here and now she is gone. She knew she was gonna die, but I never thought that would happen (duh me). What did she feel or think prior to her death in the hospital, the hospice care, right before her death? How did she face (I am sure she was courageous) death? The prospect of death?

Thinking about these nauseates me. 

She is not the first one that I knew and lost to cancer. On facebook I am still friends with a friend of mine who died of melanoma at the age of 40. I now follow blogs of not one but two deceased cancer patients. These numbers, you know are, likely to increase.

 I dislike cancer and what it does to us, directly or indirectly. I hope one day we will really be able to control this diseases.

Until then, all I can say is; please be aware of the risk factors of cancer, limit them as much as you can, see your doctor when you suspect something wrong is going on, take advantage of the screening programs (like colonoscopy, mammography and others), and be active in your own health care.

Rest In Peace GIF - Find & Share on GIPHY

gif by:https://giphy.com/gifs/rest-in-peace-gJ40p8pPDBBKw

 

 

what important thing I was reminded today

One of those days that agitating stuff has happened.

BUT

I will not let these ruin my morale and spirit.

 

I have so much to worry about and so much to be grateful about. The choice is mine.

Worry is not going to solve any problem, at least in a healthy way.

More importantly, many of the stuff I deal with are nothing when compared to life and death.

In addition, calmer mind works stuff better.

 

So here I am; agitated one minute and providing self therapy the next…..

Nevertheless, I seem to be handling this much better than before….

So, I must wholeheartedly congratulate myself, but the credit is not mine. Carry on and read the rest of the post….

…………………………..

A lot of things in life seems to be relative; youth/age, wisdom/ignorance, experience, goodness/badness, kindness/meanness, especially the breadth and depth and importance of issues..

From one person to other, from one life stage to other, from one issue to other, this relativity can shift easily.

While I was having my silly mental judo this afternoon, I read a genuine and open post from a dear fellow blogger who is a young patient with a terminal disease…. She said “do not ever let anyone steal your joy.”

I was immediately ashamed for suffering and having depressive thoughts about my silly problems….

I am happy to honor her wish and I would like to thank her for this beautiful post and very meaningful, very powerful words.

 

Raising awareness

I am re-posting of MeRaw, who has lost a young son to testicular cancer.
We all can contribute to raising awareness to help control cancer. Cancer is a very common disease (for example; in Canada, 45% of the residents are estimated to get cancer)…

On top of that, our special needs children/adults may require their families/health care team to be more vigilant about the cancer awareness/symptoms/management.
Help spread the word please.

The Journey of My Left Foot (whilst remembering my son)

Sunday 7th August

This weekend has been all about meeting up with survivors and raising awareness of Testicular Cancer, and taking part in the annual memorial trek up Mount Snowdon.

Last year I made a video to coincide with the weekend


This year I have decided to write a petition for Testicular Cancer screening to be made available to Special Needs young men.

Click on Frankie Angel bear to go to the petition

It would mean a great deal to me if you were to watch, read and sign.

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The Angel Zoe Kindness Project

What is Sparkly Shoes & Kindness day? Spreading kindness in the world however your choose. While wearing sparkly shoes of course (or some other sparkly accoutrements of your choice). And everyone’s invited!

via You’re invited: Sparkly Shoes & Kindness Day — Retro Girl & the Chemo Kid

 

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I invite all of you to read this post and wear “sparkly shoes” (or, if you are like me and do not have such a pair, wear a special pair of shoes of your choice) on Monday, April 4 to remember and cherish the 10th birthday of Zoe, a little girl  lost to cancer 4 years ago.

I have some high heels that I have not worn in the last decade or two. I will wear them on Monday for Zoe and her mom. I plan to post the pictures on Monday 🙂

Zoe’s story is narrated by her mom, Kiri, on her blog. It is a sad but also powerful story that always resonated with something in me. May Zoe rest in peace.

I hope one day we all will be free of cancer and its impact on us. Until then, be safe.

random thoughts (mostly on metastatic cancer)

1. It is kind of boring today – otherwise a very fine day. I checked on the net and it looks like I am not the only one; a significant portion of the people think that Sunday is the most boring day of the week. Nothing compares to Friday or Saturday, eh? Nothing prepares some to Monday, either 🙂

2. There are group of people who are really pushing for the metastatic cancer research. I am fully supportive of them. My thought on metastatic cancer (cancer that spreads to other parts of the body)? It is mostly ignored. I do not know why. It is ironic as this is where most urgently we need science and medicine to work for our patients. Why are we okay with letting people die of metastatic disease?

Shame. Huge shame.

On the other hand, there is quite an interest, funding, and many organizations about cancer prevention. Prevention is also important – I believe in reducing our risk of cancer by increasing our awareness and hopefully modifying our exposures and life-style factors (such as smoking, viruses, radiation, etc.) and implementation of screening and early detection programmes. But, these are not the only way to help control cancer. We must treat this disease better, too (i.e. whatever we do, we are not able to prevent or early detect/cure all cancers; at least for now).

Please do not ignore metastatic cancer.

I knew from before that there is quite a (negative) reaction towards one of the well publicized breast cancer organizations, Susan G. Komen organization in the USA, for their sole focus on prevention. It seems like we have another winner in this category, The Breast Cancer Deadline 2020, which would focus on prevention but not metastatic breast cancer.

Luckily, there are many advocates, like Robin @Majormac1 below in addition to many others, raising their voice to draw attention to metastatic breast cancer (as well as male breast cancer) and lack of interest by the “prevention” organizations on Twitter.

The more we advocate for it, the more attention it gets. Advocates rock – I appreciate their work so much.

 

And the tweet below from a metastatic breast cancer patients tells everything out:

The research into metastatic cancers, whether it is breast cancer or other cancers, is very limited. If we do not have funding, then we do not have much research. If we do not have research, then we do not understand it. And if we do not understand it, we can neither prevent or treat cancer. As simple as this. @LuluChange’s tweet is the heart of the dilemma; we cannot pretend to prevent cancer with limited research and lack of understanding about all aspects of cancer.

Please take a moment today and reflect on the effects of cancer on us as individuals, families, and societies. We must way ways to better control this disease, hopefully without leaving any patient (such as metastatic cancer patients) out.

 

3. The cancer language is so wrong sometimes. And the tweet below broke my heart. I too believe that no patient fails the treatment, but medicine and treatments fail them. Shame.

 

cancer, piss-race, awareness, and hope

Never under-estimate the power of hope.

Especially in the face of unknown, such as a cancer diagnosis.

If a charity run/walk,  a card, an email, a gift basket, a comment, a hug is giving hope to a patient, a sense of being cared/supported, I will do it.

Even though it is not going to be useful for many others, often less unfortunate ones that I cannot reach, I am not going to think about not doing it.

Well, of course I wish what I can do would be helpful for everyone.

But, if what I can do cannot be helpful for everyone, it should not mean that I should not do it or I should not support a small number of, even one, patient.

In cancer there is such a hierarchy, if you will. Those who are diagnosed with cancers that have generally good survival probabilities (such as thyroid cancer) are overlooked by many (not only physicians but also patients afflicted by other cancers). The same with the early stage patients who have better survival probabilities than the advanced and metastatic cancer patients. The use of terms “cancer” and “luck” in the same sentence is weird.

It is great that some types of cancers and early stages of cancer have good survival probabilities. I am so happy for this and I so hope the same progress for the others, especially the deadly cancers such as pancreatic cancer, early stage cancers with high-recurrence risk, and the advanced stages (stage III and IV) of any cancers. We need to have hope that one day we will see this, too. Hopefully soon.

Science and medicine is progressing in an exponential way; I think, overall, we are much luckier than the previous generations. I am sure decades ago, patients diagnosed with so called “good” cancers had grim prognosis as the treatments for them were not developed  yet. But it is possible today for a substantial portion of the patients.

If we are going to solve this problem called cancer, reduce the pain (both physical and emotional) caused by it, and find better prevention, screening, treatment, and cure strategies to reduce its impact on us, we gotta do it all together.

Not by fractioning.

Not by overlooking, ignoring, or selectively focusing on, or advocating for early stage, late stage, so called “good” or “bad” cancers. Or whatever.

Not by undermining efforts that aim to tackle cancer, whether it is raising awareness, advocating for more research, or health-care services, or development of better treatment and cure options (I understand though, sometime due to limited resources, we may need to prioritize the select efforts).

Cancer is not a piss-race: I wrote about this earlier and there are many others out there who presented their opinion. Of course I do respect others’ opinions and I expect the same in turn.

I understand that we all advocate for things we care for.

I care for all cancer patients.

If I can make one person aware of cancer…

If I can make one person learn about symptoms or screening tests for cancer…

If I can make one person understand their risk factors to develop cancers…

The truth is; there are so many people out there who are not aware of these.

And if they were, maybe they would help reduce their own cancer risks, seek medical care as soon as they experience the symptoms (not much later), and thus get an early diagnosis (early diagnosis can hugely help with better survival rates).

So, I think increasing awareness about cancer is important. So are advocating for better prevention and screening strategies, more research and research funding, and development of better treatment options for all patients.

This post is a little bit out of focus and probably not conveying what I exactly want to say; you will have to excuse me as today I am somehow pissed off about cancer, by cancer, the cancer piss-race and the hierarchy within it.

The life in the diary – XVI

Fiction

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May 6, 2013

I am feeling a little bit better today.

I had a nice walk around the beaches area. To me it is a small, lovely village in a big, big city. What a nice change of atmosphere in such a short distance.

I walked around the beach, sat on a bench for an hour so, ate a hot-dog and drank my tea. Yep, I have got a hot-dog; not necessarily the best food in the world 🙂 I feel like compensating for this by drinking the tea; a nice hot cup of papaya and mango tea. It smelt so good that I had to close my eyes for a second and enjoy that feeling entirely. That moment felt good… I am pleased to have delightful moments. However transient they may be….

I think feeling the sun on my skin cheered me up today. What is it about the sunlight that is so energizing, so nourishing? Science says it must be the hormones that are regulated by the sunlight. And maybe it is the vitamin D my skin cells produce when exposed to sun light?

Vitamin D… That brings to my mind the recurring question – I do not know what to do about the supplements. Should I take them? Should I not? Some scientific studies suggest that they are useful. But then the regulatory institutions/organizations say that it is premature to make a definite conclusion about the health benefits of many supplements. All these internet sites that promote them, all the people they say they benefit from them. Whom to trust? What to do? I feel stuck at a corner. What if they are useful? What if I am missing something by not taking them? Or, what if taking them would not benefit me, worse yet, harm my body? What if I would think it was fine to eat whatever I want as long as I take the supplements, as I would believe they would do all the good? No, I m skeptical. Way too skeptical…

That is so tiring…. Trying to make decisions fast, many all at the same time. Considering cons and pros of all these things that are new to me, new to my life. I am in a constant rush, carrying with me a heavy load of impatience. That stresses me;  the more hurriedly my mind tries to make a decision, the darker my psyche gets; I feel unhappy, confused, inefficient.. My shoulders sink – I do not want these feelings. To run away from them, I get up and walk away from the bench.

I love seeing the families with children, parents, and dogs; they are busy enjoying this beautiful spring day. That feeling eventually turns into resentment, though. Why can I not enjoy my life? Why was I denied this?

What is more unfair I wonder; to get cancer, or to get frustrated by others’ happiness, health, and joy?

I am very close to hating myself for this ever-expanding selfishness. I gotta remind myself that not everything is about me.

But then it is; is it not?

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The life in the diary – XVI

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The legacy of Terry Fox

Together with my colleagues, I walked at the Terry Fox Run today :)))

We were seven people and raised more than $700 for cancer research! What an amazing feeling… I am sure all Canadians know who Terry Fox is; for those not in Canada, please check it on internet (here is a brief intro).

Terry Fox was a brave, dedicated, and visionary young man who we lost to sarcoma at a young age. But, his legacy continues. He started his Marathon of Hope 35 years ago in eastern Canada with one leg (he lost the other leg to sarcoma). His aim was to run Canada from east to west, while raising funds for cancer research; he only asked $1 from each Canadian, which would total to $35 M. Unfortunately Terry died before he can finish the Marathon of Hope because of metastasis to his lungs… Since then the Terry Fox Foundation has raised more than $650 M and 84% of all money goes directly to cancer research.

Terry Fox is my hero and every time I remember him, tears fill in my eyes.

Hope we can continue his dream and eventually cure this stupid, sneaky disease called cancer.

joy journal – August 16, 2015

  1. I am grateful for getting up before 9 am. Days when I get up that early make me feel like there are so many stuff I can do within that day. I like this feeling. Often times though I have no idea how to fill the day…
  2. I am grateful for going to my favorite cafe and eating my favorite bagels and drinking coffee, while also surfing on the net. It was a delightful morning.
  3. I am grateful for doing grocery shopping this morning. I bought only a small amount of stuff, knowing that I can always visit the store should I need any items (it is 5 min away from my house). I felt abundant once I got some produce.
  4. I am grateful for yogurt. I time to time consume yogurt regularly and enjoy it highly. I had run out of it yesterday but was able to get two containers today. It is such a healthy food – I seriously think that it neutralize some of the toxins…
  5. I am grateful for eating an apple, salad and a healthy meal today.
  6. I am grateful for starting to declutter my home today. It is going well, I feel like I gotta declutter even harder, and am excited about the feeling it gives. Relief in so many different levels…
  7. I am grateful for finding items/clothes that I need while decluttering. It looks like I have forgotten what I have.. But then if they are not where I can see them, how can I remember every single item? Lessons learnt 🙂
  8. I am grateful for aerating my home today. Fresh air is awesome. It also cools down the upstairs, making sleeping easier and comfortable 🙂
  9. I am grateful for today being a sunday. I was free to do whatever I want to do and I enjoyed relaxing at home very much.
  10. I am grateful for turning the TV off. I am listening to the music rather. It is a first for me – in the last few days I was not paying much attention to the programs anyways; so why to keep it working for no reason? I am proud of myself for doing this (I always have had TV on to have a background noise – until this time; who said “never say never”? 🙂 )
  11. I am grateful for deciding to dump my VCRs and CDs as well.
  12. I am grateful for the little mat I have found today – it fit so well to is new place I am awed 🙂
  13. I am grateful for the trees in my yard. When they whoosh with the wind, it is so calming.. I would not buy a house that did not have a yard or no mature trees in it.
  14. I am grateful for flossing today 🙂
  15. I am grateful for living in a quite neighborhood.
  16. I am grateful for deciding to not throw a birthday party for myself. I want to, I really do. I want to have my friends around, eat, and laugh. But then the idea of shopping and cooking makes me highly hesitant. I made a deal with myself – I will not have the party but will give myself a gift. Something unique, original. something that will make me remember this beautiful age.
  17. I am grateful for all the books that I have at home but did not read. I thought about the books today extensively because I know I will purge them quite a bit too. But more than that I know that there a bunch of books that I have never read. These books excite me as I can grab any of them anytime and satisfy my need of reading without making new purchases. Very good 🙂 All I have to do is to continue my decluttering process and identify those books.
  18. I am grateful for the foods I eat, clothes I wear, furniture, laptop, internet, TV, cable I use, water I drink, and the air I breathe.
  19. I am grateful for reading a blog by a terminal cancer patient. She brings in a different vision to terminal disease; rather than resisting the idea of being terminal, she accepts it and sees the positive in every single moment. She sounds pretty sincere, refuse to be a victim of “why (i got this disease)”, and that is why I believe we need more patients like her providing their view. While I do not like cancer and deaths from cancer, if (and only if) it is inevitable having some kind of peace or acceptance around it very much lessens the “power” of cancer over us. That is what I thought after reading that post – that cancer had no power on that person. And I liked that. Very much indeed….

a list of resources for cancer caregivers

I must admit writing and thinking about cancer bring some heaviness to my heart. This post will be the last one about it hopefully for at least a couple of days.

I know a wonderful caregiver, who despite her senior age silently and all alone cried, suffered, and endured, and with almost no support from the rest of the family relentlessly cared for her daughter and helped her recover from cancer.

This caregiver will always have a special place in my heart and I will always have an incredible respect for her resilience, strength, and determination.

Caregivers are wonderful. I personally take this moment to recognize and appreciate their efforts, to thank them, and to let them know what an important role they have had in patients’ lives.

Caregivers’ emotional, physical, financial, and other needs I find are somehow neglected or not acknowledged. Yet, they may need support, understanding, and care, too.

I have collected some links below, which I hope may be useful. I am sure there are many out there, please feel free to explore.

cheers

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National Cancer Institute’s (USA) “Caring for Caregivers” booklet http://www.cancer.gov/publications/patient-education/caring-for-the-caregiver.pdf

American Cancer Society (USA) “What it takes to be a caregiver” booklet:http://www.cancer.org/acs/groups/cid/documents/webcontent/003199-pdf.pdf

Coping checklist for caregivers” link

Distress checklist for caregivers” link

Canadian Cancer Society (Canada) “If you are a caregiver” link

The American Society of Clinical Oncology (ASCO; USA) “Caregiver support” link at Cancer.Net

UC San Diego Moores Cancer Center’s (USA) “25 tips for caregivers” link

Helpforcancercaregivers.org 

survivor guilt in cancer

I have been reading a blog here (which blog unfortunately I cannot remember now) where the blogger was feeling a “survivor guilt” because s/he had early stage cancer, was now doing well, but was nevertheless feeling guilty of surviving while many others did not.

I have been hearing survivor guilt in cancer patients for some time. I wonder whether it is used to cover overlapping but distinct concepts?

The wikipedia entry for survivor guilt, although not specific for cancer, explains it; notice how different it is; i.e. those feeling survivor guilts blaming themselves for the death of others.

In cancer, I do not think any of the cancer survivors blame themselves for the death of others. But I know from many survivors that they will not feel good about their own survival (at least time to time) when they see others who are lost to this disease. It may be one of the reasons driving the patient advocacy, fundraising events, and support groups with which cancer patients and others affected by this disease relentlessly work to control and to reduce the burden of cancer (thank you all).

To me, this is different than the survivor guilt expressed by some cancer patients diagnosed with early-stage cancers or good/easy cancers (I do not appreciate this classification by the way), such as thyroid cancer, which generally have relatively good survival rates. I sense that this guilt is different. I kind of feel like some patients may blame themselves for not going through the same serious ordeal as other patients, such as advanced cancer patients do (multiple surgeries, chemo, and radiotherapy, recurrences, unavailability of effective treatment options etc..).

Do the doctors, media, and others who categorize these cancers/patients as easy to treat/cure have a role in this survivor guilt and somehow lead some patients to be apologetic about their own survival? Is this comparison among different cancers even useful or healthy?

I care about all affected by cancer regardless of their prognosis and I said it many times, only because it is true that, cancer affects all of us. In so many different levels. I just wished noone was apologetic about surviving cancer. Let’s continue to direct our collective efforts to help effective control and treatment of this disease in every cancer patient.

why hearing other opinions are important? cancer as one example

I have written a couple of times about my personal and professional sensitivity towards cancer. I think cancer is a disease that well deserves to be eradicated (though logically I am aware that this is not gonna happen in my life time, and until then reducing the cancer risk and encouraging more research and development of effective screening, diagnosis, and treatment strategies is a must).

Patient, survivor, and caregiver experiences shared in blogs, newspapers/magazines, online resources, and social media are incredible learning opportunities about this disease, its impact, and the vast array of opinions/experiences/attitudes about cancer. I admit prior to maybe a year ago, all I knew about cancer, risk factors, diagnosis, and treatment options were through medical journals and organizations. Since last year, I have been increasingly reading about cancer patients’ experiences, mostly through twitter and wordpress and I am amazed by how much I learn about the other face of cancer; the human experience.

I am also surprised to see that sometimes some cancer types (such as thyroid cancer that has usually very good survival rates) are annotated by some as “good or easy cancers” and thus patients affected by these diseases are left out (and often outraged by such comments – and rightfully if I may add), as if it is not enough to go through its diagnosis, surgery/treatment, and survivorship issues…. Today I am also surprised to see that a pancreatic cancer advocacy group made an ad implying that the patients affected by pancreatic cancer are “envious of patients affected by other cancers” (such as breast cancer) due to availability of treatment options  and relatively higher survival rates.

I do not understand why the research in deadly cancers (such as pancreatic, gastric, lung and other cancers, or metastatic cancers as a whole) has traditionally been neglected, which has led to limited treatment options and high mortality rates. That breaks my heart (seriously) and I believe is not acceptable and this is what we need to fight against. If we all push for more research and better medical care for all cancers, if we act in unity (rather than belittling or ignoring some cancer sites), does not our chance of controlling this disease increase?

I honestly used to think that some cancers were worse than others (i.e. high mortality cancers)… Now, after I saw different opinions and experiences by cancer patients, I am changing my opinion. I tend to agree with others (e.g. see the links above as examples) that cancer should not be a piss contest or a competition; cancer is cancer – each patient and their family/friends/caregivers seem to go through it in different, individualized ways but the main theme does not change: the uncertainity about the future, financial, emotional, social, and psychological impact, and most importantly, facing our own mortality.

That is why I have great respect and admiration towards each of the cancer patients and caregivers. Each one of them…

The personal choice – genetic testing and cancer prevention

I am sure many people heard that today the actress Angelina Jolie Pitt made her surgery public that removed her ovaries and fallopian tubes as a preventive measure to prevent ovarian cancer. She had previously had her mammary tissues removed to prevent the breast cancer as well.

Ms. Jolie Pitt is a carrier for a BRCA1 mutation that significantly increases her risk of developing breast and ovarian cancers. BRCA1 is a gene that when mutated causes some abnormalities in cells, one of which is the transformation of cells into cancer cells.  Ms. Jolie Pitt’s has expressed earlier that her mom had died of ovarian cancer; I am assuming her mom was also a carrier of this mutation.

Today’s public announcement by Ms. Jolie Pitt is followed up by opinions by others; some medical doctors says she has done the right thing, some individuals highly support her decision, and some others oppose it; if you look at the internet you can find examples these opinions.

I have a couple of things to say:

1. The increase in public awareness made by Ms. Jolie Pitt about hereditary cancers, specifically hereditary breast and ovarian cancers, is huge. It may or may not be easy to disclose such as personal information, but I personally thank her for her decision to publicly mention her story, increase the awareness, and help people think and discuss about these diseases, cons and pros of genetic testing, and the possible prevention measures (I am not saying that everybody should follow or should not follow her decision – please see below).

2. That being said, there are many women and men, who are carriers of mutations in BRCA1 or another gene (BRCA2) that increase their risk of developing breast and ovarian cancers, whose story remains unknown to many. Sometimes this is by choice (for example, to protect the privacy of individual or their family members, and to prevent potential negative consequences of disclosing such information) and sometimes even though the individuals are vocal about it, their voice and stories do not make a comparable impact on public’s awareness. In the first case, I think it is everyone’s own decision either way (to disclose or not to disclose) and I respect everybody’s decisions. Eventually, it is these individuals (and possibly their family members, as there is a chance that other family members who may carry these mutations are at increased risk of developing the diseases as well as the potential consequences of this knowledge) who will be most impacted by their genetic make-up and family history. But, I keep wonder why those individuals’ stories do not impact the society as a whole as in the case of Ms. Jolie Pitt’s case. I kind of know the answer, but I will leave it to you.

3. Important thing about genetic testing is the informed consent, where the individual is informed about potential consequences (such as estimation of the probability of developing a disease – in this case breast and ovarian cancers – so that individuals are aware of their risk and then can decide what to do in the light of this information). Surgical removal of susceptible tissues (such as breast and ovaries in the case of Ms. Jolie Pitt) or frequent monitoring of the susceptible tissues my imaging and other cancer detection methods without the radical surgery are among the options.

4. Some individuals may decide not to get genetic testing and thus not to learn their risk, and I respect that decision too. There may be negative consequences to genetic information (also here). I think it is a personal choice to get the genetic test or not, or to decide how to prevent the disease (or not), as long as the individuals are given knowledge on the potential positive as well as negative consequences (on themselves as well as possibly their family members) and they have had enough time to consider, contemplate, and decide what is best. Also it is their choice to disclose this information.

In summary, in my humble opinion, when comes to genetic testing and cancer (or any other inherited) diseases, the only thing wrong is not informing the individuals adequately about the potential consequences and their future choices. Informed knowledge is the power. Let the individuals decide.

PS. this is not a comprehensive essay on such a critical subject, so please do not take it at its face value. Seek knowledge and opinion from others, especially genetic counsellors and medical professionals.

tomorrow can be a better day

I am not sure what should be the title of this post: “joy journal” or “random thoughts”.

I will let you decide.

1. It is a sunday night 🙂 The day has been okay; I had breakfast at a cafe, spent time reading and writing, prepared a healthy meal and enjoyed it, and I am into this peaceful night a lot.. Maybe I will go to bed late, till I really relax browsing/reading. I have no interest in going to work tomorrow – I have been feeling so in the last few weeks. For some reason, I am feeling overwhelmed when I think about work. But then when I go to work and work efficiently, I feel great about myself, great about my work, and great about my day.

I can feel the stress on my body, though – my shoulders are tight and achy; I hope this feeling will be gone quite soon.

2) I have been reading quite a bit about the posts written on cancer. It occurs to me how different people go through it differently. And there is so much courage and effort there; important decisions, overwhelming feelings, obstacles that do not exist anywhere else but the reality of cancer to be overcome. Cancer is such as personal experience and such a demanding disease – physically, psychologically, emotionally, financially, and socially. Why do we have this disease? Why did it evolve and make itself an integral part of our lives?

Stories I have read as well as the writings by the patients reminded me that I have not been to my physician for some time and it is time to get my blood test done; running away from the medical care is not the solution – in contrast it can create problems. Cancer for one if diagnosed early can be treated more effectively. It saves lives.

I thank all who shared their stories and increased awareness about this disease. Very well done.

3) This morning there was high winds around here – before that though, it rained… The problem with rain immediately after a lot of snow is that it melts snow… And the snow we have had last week was too much and the city did not remove them from the fronts of our houses. So in the morning while going to the cafe, I noticed that there was an accumulation of rain on around my house, around the snow banks. It alarmed me; I tried to open a passage for this water to run down the street (I am on a street with a slight hill) so that instead of accumulating around my house, the rain would drain down to the street. I have checked it a couple of times, seems to work rather inefficiently. I hope tomorrow will be a better day..

Yes, tomorrow can be a better day 🙂 for everyone I hope 🙂

no headline today

While I really am interested in increasing awareness about the experiences of cancer patients, survivors, caregivers, and family and friends who are all affected by cancer, I must admit reading, thinking, and talking about cancer makes me “feel” it a little bit closer. And it is depressing.

To change the subject, I started reading and thinking about other diseases and got more depressed.

There is a limit to what one can undertake.

I think there is a survival mechanism somewhere in us that gives this feeling a break and directs us away from distress and helps find us things we can enjoy.

For me, that will be remembering the activities I enjoyed, like that 2nd hand store I like going around. I have been there more than 3 months ago. Time to re-visit. See what I can see, what I can find to purchase.

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.

Liebster award – answers and nominations

I have got an invitation by purpldragon a while ago to participate in the Liebster award- purpldragon; thank you for this 🙂

I have considered it a bit, while I am not sure why it is called an award, I decided it would be a great opportunity to link some of the bloggers here; I have chosen those who are affected by cancer (please see below).

First; an introduction to the Liebster awards:

According to purpldragon (and I quote) the “Liebster Award is a chain award created by bloggers and passed on from one blogger to another to encourage connections. It is a wonderful, fun way to interact and make friends in the blogging community.”

And again, according to purpldragon (and I quote) ; these are the rules:

1. Thank and link the person who nominated you.
2. Answer the questions given by the nominator.
3. Nominate 11 other bloggers, who have less than 200 followers and link them.
4. Create 11 new questions for the nominees to answer.
5. Notify all nominees via social media/blogs.

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For this award, I have chosen the following bloggers, who post about their experiences about cancer.

Cancer has an important part in my life personally and professionally. Learning from cancer patients, caregivers, and advocates through social media has been an incredible experience for me. I have great respect and admiration for those affected by cancer and I believe their “voice” in social media is highly important.

I nominate the following bloggers – I hope they will be okay with the nomination:

1. Celeta’s journey

2.  A Melanoma journey

3.  Going to beat this cancer

4. The cancer chronicles of Julie McG

5. Daddy’s Warrior Princess

6. I am not sick, I just had cancer

7. Steve Dang

8. mylifewithasideofcancer

9. On a Butterfly’s Wings

10.  The Sansone Files

11. Jamie Gilmore

My questions to the nominated bloggers are:

1. How do you feel about connecting to others going through cancer in the social media?

2. Do you think connecting to other cancer patients would be useful in supporting you and them while going through the disease?

3. What are the words, sentences, or questions you think are appropriate to hear from others when they first learn one has cancer?

4. Do you have care-givers?  or Are you a care-giver?

5. What kind of support would you like from cancer-related organizations and the government?

6. Do you think you sharing your experiences in the social media help others going through similar experiences?

7. What is your favourite book? TV show?

8. What is your favourite season?

9. What is your favourite breakfast?

10. Do you have artistic creations, such as poems, stories, drawings, paintings, and hand-crafting?

11. Is there  something you would like to share about your experience with cancer?

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My answers to purpldragon’s questions can be found below:

purpldragon’s questions:

1. What inspired you to start blogging? I had things to say.

2. What is something you dream of achieving? Happiness

3. Do you have any phobia’s if so what are they? Darkness

4. Do you prefer reading or watching TV? Reading; but TV is awesome, too

5. Which super power would you rather have, flight or invisibility? invisibility

6. What is something people don’t understand about you? My thoughts (unless they can read minds, they cannot know them anyhow 🙂 )

7. Do you keep a diary or journal, if so what would you do/ how would you feel if someone read it? I do have a joy journal that I post here. I am happy to share it with the world and I hope it will inspire others to write their own joy journals.

8. Is your bedroom usually neat or messy? Neat

9. How many countries have you visited (no matter how briefly) other than the one you live in? Four

10. What small things make you really excited, name at least three? Stationary items, coffee, writing letters, books, and a great breakfast

11. Do you have a favourite saying, if so what is it? “Live life, love life” (of “young adult cancer Canada“)

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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