Monday, July 16, 2018

New App for Cancer Patients

Over the next month, I've partnered with Breast Cancer Healthline to test and use a new app for breast cancer patients, and I'm excited to share it with you.

Why an App?
The internet has changed so much over the years - when I was first diagnosed, the only thing available were articles,  forums and blogs. What I really needed was human interaction, so I found's forums and posted there to get the help and advice we all need so much, but I found certain aspects of it problematic, mainly, the vast number of sections.  I also read blogs, and when I couldn't find what I was looking for, started my own (this very one!) so the next person coming along would find what I'd wanted.

Then Facebook rose up.  There are plenty of breast cancer groups on facebook, many of which have done a lot of good.   I truly believe that my blog and facebook helped spread the word about metastatic cancer, and while groups and companies have a long way to go, those of us with mets are not always forgotten as we used to be.   There is a negative though - when you log onto facebook just to catch up with family for friends, you find that many of the groups have had people who have died. It becomes overwhelming, and certainly is not what a newly diagnosed woman needs to hear. 

Now, an App
The latest and greatest technology is an app. They are designed to keep you entertained, organized, help with shopping and productivity.  And now there is one designed for breast cancer patients, so we can talk to each other.  It's so simple - it's in your purse, in your pocket; it's easy to use and there are people waiting to talk to you at the push of a button.  And you get to control when.

The overall point of Heathline's Breast Cancer app is to match you with others who have breast cancer one-to-one. Not only just match you with similar women. They match you to another person who has put down some of the same concerns that you have.  There, you talk to them individually, via an ice-breaker question where you can start a private conversation -  or through group topics.  One of the things I enjoyed was the groups were not be broken down into every type and combination of breast cancer there is, as it becomes confusing and impossible to fit in.  So far, there are just five main topics, which seem to cover everything we need when it comes to breast cancer. And, yes, Stage IV is one of the topics.

Now, let me assure you this app is free and ad-free.  I am asked to advertise things on this blog every day and I say no to 99.9% of those things. Every app so far that I've been asked to look at has been the same - medication monitoring and doctor appoint remembering.  None have been about what we women need and want - communication.   I have worked with Healthline in the past and know the to be a trustworthy company.  This app is something I believe in, and I think it is handy to have, and if you are having one of "those" moments, you know, those "I need to talk to somebody who gets it or scream" moments -  well, this app can be there for you.  It is also very handy for those newly diagnosed, which is by far the most confusing time of a persons life.

So did I interest you?  How do you get it?

For Android or iPhone, you can download it here:

Here is an article about it, and I was interviewed! 

Sunday, July 8, 2018

Gifts, they keep on coming....

Me and my son at Caltech's Graduation Party

I've fallen back into the world of the consumer, living life as others do, unworried about the future,  as it should be for a person who has lived 3 years in remission.  The cloud is gone, the sword has disappeared, and I no longer worry about my illness and death.  Fantasyland?  So far this disease is not considered survivable - but that was before there were many of the drugs we have now.  We don't have new statistics as we haven't reached the end cycle of the studies.  I may have a relapse and die, as several long-term friends sadly have, or I may be on the leading edge of a new wave of Stage 4 Survivors.  For now, my doctor says stay in treatment, we'll talk about it in a decade, and he doesn't know more than that.  I can live with that, I have learned how.  Uncertainty is my jam.

Whatever happens with my cancer, it is not happening today, this month, the next three months or (with fingers crossed), even this year.  So sure, I am left with certain problems from years of continuing treatment but on the whole, living well.  I am back to buying clothes off-season for the savings, buying regular beauty boxes without worrying I'll be gone before it arrives, splurging again on a handbag or shoes since I believe I'll be here to enjoy it and I deserve it (as does everybody), and generally going crazy with the perfume!  (I smell wonderful, always, even if I wear PJs all day.)

But as much as I am back to enjoying frivolity, I have been given gifts much more satisfying.  For life continues to march forward, with milestone after milestone, ones I thought I would not be here to see. Now, each one delights me, and I enjoy it like a child on Christmas morning.   A couple of weeks ago I was privileged to watch my youngest son graduate -  from college.  Something that back in the early days of this disease, and which long time readers of this blog know, I never thought possible.  Well, that isn't even the truth, I never thought about it at all. 

I cried like a baby when he made it to his high school graduation and vowed to make no more future goals aside from making his college dorm bed.  And I haven't, but life in its beauty and sadness keeps coming.  This time - this graduation - there were no tears, just beams of pride.  (And a rather large dent in the bank account, chewed up feet from mismarked shoes and an argument with a stranger that maybe I'll tell you about one day.)

He has always been a high achiever, my baby, and he continued that at Caltech, one of the top technical/science schools in the world, graduating with a high GPA and a double major - in mathematics and computer science. Yes, I most certainly am bragging, but he's done, I can't brag about college again.  (I'm sure I'll find something else.)  He has never been home since he left at age 18,  except for Christmases and holidays.  He spent every summer interning and learning software engineering, and now he will start working at Facebook this fall, making, at age 21, a starting salary that made me gasp.  He seems happy to be done with college, and eager to start his new life but mostly, he seems to be enjoying each day.  And isn't that what you want for your kids?  To do better than you, certainly.  But to also be happy.  So wherever his path takes him, I'll be there rooting him on, even if it changes and becomes entirely different.  It does for most of us, doesn't it?  I am lucky that he is home for this summer - the last time he will ever live with me.  Then, the plan is to scrape up the last of my father's inheritance (which is how we paid for his school) and we'll go to Hawaii for a family vacation, of which we haven't had many since I got sick when he was 12.  Then he'll move to the Bay Area.  This time, I'll let his girlfriend make his bed,  and again and forever, it'll just be holidays and rare weekend visits.  Sad, as I would love for him to live nearby like his brother does, but this is as it should be.

The rest of my family is also doing well.  My stepdaughters are busy and happy and doing well in their respective careers, my grandchildren are incredibly beautiful and growing so fast!   My oldest son is also settled into a good career and has an active life with lots of friends and doing interesting and scary things. (Have you ever heard of Tuff Mudder?) 

So I did get everything I wanted that day I was told my cancer was life-ending - the knowledge that my family is well-ensconced in their own lives.  And now?  It's just my husband and me in our boring, married routines - watching TV, reading, me shopping, him shaking his head at me shopping. He is a decade older than me, and for the first time, I worry that he may go before me.  Fortunately, he's very healthy.

My best friend says that I'm now living life like an old person - enjoying other people's accomplishments and milestones instead of my own.  At 60, I'm too young for that, she contends.  She's busy packing and her house is on the market for a retirement to Belize and exciting adventures ahead.  Me?  Well, I can't argue with her, she's right. These days, an accomplishment of my own would be spending a few hours shopping or seeing a movie with a friend.   My husband would clap if I did laundry and took it out of the dryer on the same day.  So yes, I do live through my family.

Remember, although I'm in remission,  I still do chemo regularly.  I still don't feel healthy often. I keep thinking I should find a job at a little boutique or something; the money isn't important (although I'd feel less guilty adding another perfume to my shelf if I earned some).  Just the routine would be helpful.  Or, I should volunteer at my old school.  But then, I do chemo, and I'm sick for ten days, or I go out to lunch with a friend and am so tired after 2 hours I need to sleep for three.  I remember again how unreliable I am.  Not to mention my white count is usually about 1.3 before my chemo, which those who get chemo understand - I barely have an immune system. They always call the doctor to ask if it's safe to give me treatment and he always says yes. 

The point is, it isn't fair to others to inflict myself on them and it isn't always safe for me to be around others. 

I don't know what goals, if any, I would have for myself, if I hadn't gotten sick. Would my husband and I be travelling?  Have moved?   The thing is - I suspect, knowing me - nothing would have changed.  I've always been happy being an introverted homebody. I've never needed loads of friends or lots of activities.  I'd still have a job, so less of the inheritance would have gone to Caltech and we'd likely have spent some on long overdue home repairs.  But that's kinda it.

Years and years ago, when I first started down this road, back before my first chemo, December 2nd, 2009 (can you believe that?)  my doctor once told me that it was active people who suffered more with chemo - people who were athletic and physical.  People like me, who enjoy reading, watching TV, doing family things - we don't feel the slowing down as much. I suspect that is true.  There is no chance I would have uprooted my life at age 60 to go to the blue waters of the Caribbean sea,  and while I admire my friend's intrepid spirit, we all live our lives in the way that is best for us.  Needless to say, I'm glad it was me who got the disease, and not her. 

There are worse things, I think, than living life through the eyes and accomplishments of those you love.  Not having those people would be far worse. 

I hope to continue to live through other people's accomplishments for many years, as long as it is these people.

My husband, son, and me after the graduation ceremony.  

I'm sorry I haven't written this blog in a few months.  I have a few things to tell you so don't disappear!  And as always, you can find me on facebook although I've been less active there lately too for no reason other than my son is home and I'm enjoying that.