Tuesday, August 14, 2018

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 breastcancer.org'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.  

Tuesday, February 20, 2018

Where has the time gone?

My husband said, "Did you realize you hadn't updated your blog since July?" 

"Wait, what?  It can't have been that long!" 

Indeed it has been.  And so I apologize, because I know that when I don't blog for a long time people assume that I am dead.

Not yet.  In fact, my routine hasn't changed since I last blogged, although a few non-cancer related things have. 

I am still on Kadcyla, as I have been since November 2015.  I have spots in my lungs that are barely active.  The only thing that shows in my liver is that the biliary tract is mildly distended, and although that has shown on sonogram and PET, nothing seems to be growing.  My last PET was almost six months ago so I suppose I'll be due for another in April.

The Kadcyla hasn't been easy on me as noted before.  I get a lot of headaches. I get a lot of nausea and heartburn, and a lot of fatigue and aching bones. When the neuropathy in my fingers and toes got so that I couldn't knit, he backed me off to every six weeks, so that's where I am now. (I was only learning to knit so no loss.)  I still struggle for a couple weeks after the infusion but then I start to feel better after about ten days, but not healthy.  Food is still an issue for me - eating is painful.  But I have gained all the weight my oncologist wanted and even a couple pounds more.  It's the fruit Popsicle diet - bad for your teeth but it's about all I can tolerate without discomfort.  The wildest thing is my liver function tests have been going up and up and up for the past six months.  He did a sonogram which didn't show anything but the biliary dilation so the numbers are likely a function of the Kadcyla.  Not sure what he's going to do about it.  He said if it was fatty liver, well, he'd do nothing, but that didn't show up on the sonogram either.  So who knows? Another thing I don't worry about.

The scariest thing is I have heard through the patient grapevine that my oncologist will retire at the end of this year.  He has kept me alive for a long time and it makes me very nervous to start with somebody new. But that is nearly a year away so no point in worrying over it now.

The best news is I have a new grandchild!  He was born December 1st, and is now at that adorable age where he's squirming and smiling.  He is the happiest baby I've ever seen since my oldest 30 years ago.  We recently took him and his brother to a playground on a very chilly, windy day and he was all smiles.  In fact, I have never heard him cry for more than a second and then he is easily soothed.  He allows me to carry him, which his brother never really did, and so I have learned just how heavy 14 pounds is when you are an out-of-shape, almost-60 cancer patient.  The two boys are so adorable, I turn into a rag doll around them- a complete love mush whom the oldest happily bosses around.  I love it.  Maybe I can't hold the baby for long, but I can play knights and fireballs just fine. 

Yes, I said almost 60.   April 5th, I'll be 60!  Wow, officially a senior citizen, no denying it now.  All this cancer business started at age 52.  I had a child in middle-school so was able to pretend to be a young mother, but now I'm a for-real old lady approaching a milestone birthday, with no end in sight.  I really hadn't felt worried about aging, or my husband aging, for obvious reasons.  (Somebody else's problem, you know?) My husband is a decade older than I am (will be 71 this summer)  and now, for all we know, I could go on for another decade myself.  All the concerns I had about that situation are back in place, but again, my mantra is that I don't worry about the future.  He works out religiously three times a week so is in good physical shape. Alzheimer's runs in his family but no signs yet.

My oldest son and his wife are planning to start their family, which is very exciting.  Having a grandchild who lives in the same town I do would be life-affirming gift. That is a future I can't stop myself from imagining; a new grandchild where I could pop over and help while mom or dad naps, babysit, and go to parks and just be there - without a difficult three hour drive between us like I have with the other two.  All of them together at holidays playing - it will be joyful. It is imagining those scenarios that keeps me going.

My youngest son - the one whose high school graduation was the thing I wanted to live to see?  He graduates college in June.   He will have a double-major in Mathematics and Computer Science from The California Institute of Technology, aka Caltech.  (I cannot brag about that enough.) He has already accepted a job offer in Silicon Valley, and just like that, he will make more than my husband and I ever did in decades of working.  We are proud of him, and will also be very happy to have no more college bills. (Thanks Dad, the money you left me covered all of his college.) 

My husband and I, like any elderly couple, have our routines.  It's funny, we moved into this house 25 years ago with four kids.  Next door was an elderly couple - nice people, but we were always amused because the old man watered his grass with a hose, wearing holey, ancient green sweat pants that showed his butt crack.  Now, a young couple live in that house with two children - and we are the elderly couple. (I'm not sure what they may laugh at since we have a sprinkler system,  but I make sure my husband's butt crack stays hidden.  Mine too.)

Because we don't know how I'll feel from day to day, we don't do any travelling or anything like that. We don't need to spend thousands for me to sleep and have a headache in a hotel room bed.  When my son graduates, we are thinking of something simple, like Hawaii, as a rest for him and a rare family vacation.  He may be too much of an over-achiever to enjoy it though, not sure he's the sit-on-the-beach type. (He wants to go to Japan, but for me....just no.)  We'll see if there is anything left of the inheritance money for this trip.  I'm also thinking a Vuitton purse might be a fine birthday gift!  (I don't think age will ever take away my love for fashion, but even I balk at $2,000 for a handbag. Maybe I can justify it with a milestone birthday?)

I shop on Amazon more than I should, because it is nice to have a package coming to the door, even if it's Breathe Right nasal strips. (Oh my god, those things are AMAZING!)  When the college bills are finished (one more payment), maybe we'll do some things around our crumbling house with the peeling pain and broken garage doors and....oh, shit,I just realized what the neighbors are laughing at. 

Our two greyhounds, however, prevent a lot of that at the moment.  They are getting old, as dogs do. One is afraid of her shadow, loud noises scare them both, yet the youngest is still a big puppy-like pest when people come over, following them from room to room.  Worse, she jumps when they enter.  Which might not be so annoying if she was little, but she's the size of a pony.  (While I have not been able to teach her not to jump, I have taught her to control her excitement by going outside and running a lap in the back - so when people come over she runs to the back door for her excitement lap, skittering across the hardwood to get there, which is hilarious.)   I want to hire a housekeeper but the dog has been a problem before.  Surprisingly, not everybody wants a waist-high dog following them from room to room and sniffing their crotch while they clean.  Boarding them is incredibly expensive.  Every time we go visit the grandkids and stay somewhere overnight, we double the cost of a room to board our dogs. It's a hundred a night for them!  What a racket. 

My little kitty died.  We tried to keep her alive too long I fear.  She gave us a great 18 years and it was hard to let her go but we were doing her no good with the treatment.  I'd like another cat to be honest, but not until the dogs are gone.  I still hear Pixel - there are sounds that mimic her jumping off the table and coming to see me,  and she's been gone for six months already.  I miss her.

And, that's it.  A boring life, but it is a life.  You can see why I haven't blogged though.  It's not so easy to just say "I'm alive" every few days.  I'm at the phase of life where I am waiting for others to do things that excite me while my treatment is stable. No cancer blogging material.

I do quiet things - artistic, crafty things, and read and play on the Internet (although I've even been taking a break from that for a bit).  I have become a perfume addict, with maybe 100 samples I'm methodically trying, from vintage to brand new, and am learning all about it and the difference between Chypre and Gourmond, White Flowers to Aquatic, and I am smelling the individual notes in each perfume.  I go in themes; I just bought samples that movie stars of the 50s liked, as well as wedding day scents of famous royals.  Maybe I'll pop into the blog to write about perfume or one of my other interests since my health is continuing to be stable.   My current wearable favorites are Miss Dior, Mon Guerlain, M. Micallef's Ylang in Gold,  and my old favorite, Joy. 

I will let you know if I have a PET upcoming and what it says.  When I first was diagnosed with mets the idea of living 8 years seemed almost impossible - a pipe dream.  Now, it seems realistic to live another 8 and another 8 after that.  Never give up, my ladies with mets.  If you read back early in this blog, you'll know I didn't have an easy time of it, and it didn't look good for a while, and progression happened with many chemos.  And yet......here I am. 

My best advice to you who is newly diagnosed and finds this is to not assume your time is limited.  Doctors shouldn't give out statistics because they are not for people, they are for populations.  Don't nag yours for one if he doesn't volunteer because he doesn't know.  Every person is different.  If yours does give you a number early on, don't put your faith in it.  Living years happened to me, no reason it can't happen to you too. Don't stamp an end-date on yourself, because you are going to feel pretty foolish when that date passes. 

On the other hand.....you'll never be more happy to have been a fool.


Almost 60!


Thank you to all who have used my Amazon affiliate link when doing their shopping.  If you click there before a shopping trip, it gets me a few dollars every month, and since all of my unnecessary but still fun shopping is done online now, it really helps.