Saturday, December 1, 2018

Healthline Mentor

I have had a long and excellent relationship with a company called Healthline.  I am not on their payroll, for the record, but we have done projects together.  One of them was my being a mentor to a woman diagnosed with metastatic cancer.    They were going to film our meeting. I was pretty excited about meeting Susan, although they told me almost nothing about her so I could do no research on her situation.  I have talked to a lot of newly diagnosed women online; my goal being to give them hope that some longevity is possible and that many of the things they hope can come true.  But I haven't met any newbies in person.

I loved meeting Susan, hearing her story and discovering our similaries.  However, I wouldn't exactly call her a mentee or me a mentor, as she had mets for four years and has spent her time in a support group for younger women to help them process their diagnoses.  Rather than being a mentor to  her, I considered us equals. 

That doesn't mean it wasn't an important or valuable meeting for me, and hopefully for her.  But we were definitely on the same page as far as cancer goes.

Healthline wrote a story about it and posted the video.  For some reason, the only way I can get the video to show is separate it from the story, (which may be my computer) so here it is, and here is the story: 


https://www.healthline.com/program/breast-cancer/metastatic-mentors-susan-ann

I hope you enjoy it and get something from it!  If you need to contact me, I suggest you like my facebook page and contact me through messenger as my email is becoming difficult to sort through due to spam.  I hate to think I've missed people who really want to speak to me but I'm sure I have.  




Thursday, November 29, 2018

Biological Odd Duck

There are cycles to living with metastatic breast cancer, especially for as long as I have.  Of course, first comes fear, sadness, mourning, then gratefulness, appreciation, acceptance, even tedium.  And denial.  Most people feel denial at the beginning, "This can't be happening to me." or  "I'm just eating wrong, I can fix with flax seeds and cannibis." (You can't.).

I recently have been in a State of Denial - my first, after 9 years.

It began when I took a trip to the State of Hawaii with my kids a few months ago. Because nothing interesting ever happens anymore, I no longer blog much.  What am I gonna say?  Discuss chemo, heartburn, fatigue, pain - and do it again?  That's a pretty boring story, even Stephen King couldn't make it interesting.  Now though, I was planning for something new: I was going to blog this trip! as well as give tips! about how to pack medicine!, conserve energy!, as well as normie things like what to bring, and even include photos but....I didn't.  Like Eeyore, I turned out to have "not much energy for a story."

In my adult life, vacations have been few and far between. Either money has been tight, traveling with kids difficult, or both.

Five or so years ago, during my gamma knife radiation treatment, my father died.  It took a while but his house was sold and that money shared between siblings.  My portion was used to pay for my youngest's education. To compensate my oldest we paid off his student loans. I bought an expensive handbag and with the very last bit I figured a family trip was in order.  My dad had taken us on a trip to Mexico and I wanted to share the wealth as he had.

But obviously, I can't go to Mexico, not after my unforgettable fight with cdiff.  No way.
We simplified and went to Hawaii, Maui specifically. Instead of hotels, I found a condo that fit us all with only one couch sleeper.  California to Hawaii is an easy trip, (try to get back east from where I live sometime - once I went to Pittsburgh on business and it took 13 hours and 3 plane changes).  It just seemed doable.

That settled, I planned the vacation around my chemo treatments.  I would have chemo, give myself as much time to recover as possible, leave for Maui and come back right before my next treatment. I hoped this schedule maximized my healthy time.  With the help of my son, reservations were made.  Done!

Years of missing an immune system taught me to pack face masks, spray disinfectant, hospital wipes, and to cross my neuropathic fingers tight (not that I'd feel them), hoping I wouldn't get sick from the germy plane.  Fortunately, I was surrounded by family (I made myself a citizen of the middle seat) and didn't see any creatures or sick people, so with hospital-grade wipes, I obliterated germs from trays and seat backs, listened carefully for somebody coughing or making a sick noise, and hearing nothing, I ignored the uncomfortable, yet adorable Kawaii masks I'd gotten from Japan.

Hawaii is breathtakingly beautiful, as those who have been know. Upon landing, it's like the stage  lights are turned up, the colors more brilliant than a child's happy drawing, and the air is made of La Mers lightest moisturizer.  It was more humid than the last time  I'd been (a decade ago) but the warmth hugged me like fleece.   Or maybe what was hugging me was my hair that frizzed into a shoulder-length ball in mere seconds.  I didn't even need sweaters this time - the only place I was cold was in the condo as my family needed overhead fans and air-conditioning.

While the flight is under 5 hours, by the time we were in the Islands,  I was exhausted, grumpy, achy, hungry, dizzy,  headachy and even sleepy.  All chemo dwarves accounted for.

What is it about planes?  The discomfort of the seats?  The pressurized cabins?  The roar?  The inability to move freely? (Even at 100 lbs its hard, I can't imagine those of you bigger than me managing). The bad TV? The drink cart always blocking the aisle when you need to pee?   It's just so tiring.  Maybe I'm just not a good traveler.   Maybe I should only go first class.  (Donations gladly accepted.)

So, the promised relaxation in paradise was delayed when we got off the plane and took a bus to the rental. When they told all of us in a crowded, small room with benches and screaming kids that it would be another two hour wait in the humidity for our rental car, I didn't think I could manage, so we left. They were on island time, two people working casually to rent cars for a room of 50, but I was still on California time, wanting my car NOW, to go to the condo NOW.  Only two hours into the trip, and I was whining,  "I don't feel good, my back hurts, I'm dizzy....we have to goooo..." We cancelled our cheap reservation and got a more expensive car that was available immediately.

That was an omen for the trip: nothing went as my imagination said it would.  Our happy family gathering at the barbecue to have hamburgers?  Nope.  The family swimming together and splashing in the pool?  Nope.  Walks on the beach, watching the sunset together?  Well, some of us. 

Of course, I point fingers at  me, we always know it's the mom's fault, cancer is only secondary.  There is a difference between feeling okay in your very own living room with your dogs farting at your feet, and in a living room when you travel.   I was nauseated a lot, which was strange considering the distance from my last chemo. I even puked (although to be truthful, I'm a non-drinker and I did have a free Mai Tai which set my stomach off.)  I was unable to eat much - I don't like meat and fish these days and shockingly, fruit plates were hard to find.  I was greatly fatigued, you know - my usual life, set down in paradise.  Our condo was not within walking distance of anything, which was not clear from the rental description.  The grounds were gorgeous, but no restaurants, no bars, and a golf course between it and the ocean that you couldn't cut through. they had to take you in a cart which meant you had to track somebody down.  My daughter-in-law had relatives in Hawaii, and she'd made plans to island hop, which meant my younger son was left with a sick mom and elderly dad while the people more his age were busy.  I couldn't help but feel for him.

That's not to say we had a bad time, I mean,who can complain about Hawaii?  There were moments when I felt good.  We had one long day in Lahaina where we shopped, then took a submarine to view ocean life up close which was lovely.  We went to the Old Lahaina Luau (highly recommended) and had a great time.  We sat in a place for breakfast where we looked right down on the water and saw fish fighting with each other.  We went to craft fairs and swimming and saw some lovely sunsets. I had an incredibly delicate shave ice that is not like other Hawaiian shave ices and I'm sure I'll never have it again.  It was like strings of cotton candy melting in your mouth, only ice.   A few Mai Tais and Pina Coladas were drunk by family (I learned my lesson early).  One night, my husband and son and I walked to the ocean to watch the sunset, and on the way back, struggling in the dark, we saw the milky way.  This, by the way, was on my husband and my 24th anniversary, another reason for the trip.  This California girl who had lived in cities all her life had never seen it.  It was exactly like any picture you've seen, a misty spiral of purple and blue spotted with pinpoint diamonds.  Right there, above me.  There are no words for how magical it was.

But despite many lovely experiences, my illness and fatigue interfered with much of the trip, whether in my own mind or not.  I vowed not to waste money travelling again.

I can feel bad at home.  I can feel guilty at home too.  There is no point in spending thousands to feel bad.

When I got back, I had an appointment with my oncologist.   My doctor had asked me about my trip, and I nearly lost it, tearing up while telling him how poorly I had felt; how I'd literally vomited, that the heartburn and bone pain had been unrelenting even lying in the sun, how very frustrated I was. It's hard to clarify because these are side-effects, not physical cancer, and in a doctor's eyes, I'm doing extremely well. Not that he wasn't sympathetic, he always is.  But compared to what he sees in his milky way of patients I'm still a bright light.

It was time for my yearly PET scan, and as he wrote out the orders he said some fateful words.  He said what he was hearing from me that the treatment was interfering with my quality of life - that there may be other options for me. After the PET we'll look at them. He never said what other options there might be or what he even meant, and although I asked, he did the doctor thing that they all do and said, "Let's see what the test shows first."  If there is one thing I've learned from this life is that doctors do not guess.  They are scientists and they need data. 

He was clear when he said it was okay to skip my next chemo which was in a couple of days.  He could see how upset I was.

I'm not a scientist, quite the opposite in fact, and in the interim, my fantasies took off. I heard that phrase and ran with it. Other Options? My imagination zoomed like a balloon leaking air,  certainly not what he had intended.  So, I skipped that chemo and did my PET. Then I got the results which were clean.  Really clean, as clean as the back of that airplane seat.  This time, it was No Evidence of Disease, no pesky inactive lumps in my lungs or strange twists in my billiary tree, nothing except the ever-present changes in the liver from having it partially removed, and the implants.  There was no evidence that I had cancer. Best scan I'd ever had.

Now, it was time for chemo, but did I go?  Hell no. I "forgot."  Honestly, I know it was some Wednesday coming up but I didn't look it up on my calendar.  I figured if they called me, I'd go.  But they'd called me exactly once in 9 years so it was not exactly a risk.  Besides,  I now decided that I was cured. I believed it, like a 6 year old believes in Santa.  I wasn't going to do treatment anymore.  Somebody has to be cured of this wretched disease, right?  Somebody hears the sleigh bells on the rooftop.  Why not me?  I've done well, been a good girl, went to every treatment, tried to help others who needed it.  I have been putting cancer fighting drugs in my body for 9 years. NINE.  Do you know anybody who has been on chemo for nine years?  Wouldn't you say, "oh my, that's enough!"  And, one of my drugs was new, maybe a miracle cure.  Who's to say that metastatic cancer isn't curable now?  Not everybody who was on the trial for Kadcyla is dead. My body, clearly, wants to keep going.

All in all, I had no treatment of any kind for 3 months.No port flush, no blood tests, no infusions - nothing.  I was done with cancer.

Astonishingly,  my energy began to come back.  I began getting up at 9:00 instead of 11:30.  Heartburn disappeared, constipation, and all the gut/stomach/intestine/bladder problems I haven't described because they are gross -  were gone.  I even became hungry and gained a couple of pounds and am close to my highest ever non-pregnancy weight.  I began cleaning things that hadn't been cleaned in years - I painted baseboards, cleaned the inside of lamps, room corners, got on my hands and knees and scrubbed floors, tile bleached. My house was built in 1947 and definitely shows its age and is hard to clean just because of that,  and the last few years I've mostly just done the basics so that I don't get a phone call from Hoarders - but I got much of it looking decent. I wanted it nice for Thanksgiving - I have really been hoping one of my family members wants to take that day and start a new tradition, but so far, it's me.  As I cleaned, I remembered when I had sepsis and still put Thanksgiving dinner on the table, how Whole Foods meals saved me many a time. Now I could do it without difficulty.  I bought a new couch for people to sit on, and trained the dogs that this one was not their bed. No more Whole Foods -   I even cooked Thanksgiving dinner myself instead of buying it as I had done over the past 6 years. And we had a lovely time.  I even ate, which I had not for many years.

I made plans.  I was going to get the garage cleaned of the junk, turn my sons room into a closet/spare room, or maybe fix the upstairs so when my stepdaughter comes with kids they have lots of room.  I was going to hire contractors to do what I can't, money be damned!  I can now get up and let them in, be dressed, handle the dogs.   Years of neglect due to fatigue - I was going to turn it around - I could turn it around!

I began believing - sincerely - that this had been an ugly decade in my life that was done. I was 50 when diagnosed.   I'm now 60.  I have no idea what a normal 60 year old feels like or if my fatigue is age or treatment.  But it started to think it was merely treatment.   If I went to Hawaii now, I'd be fine, able to enjoy the food, spend time touring.  I started thinking about a make-up vacation for just me and my husband, who has always wanted to see Florida.  I mentally put cancer in the past. I ignored cancer much as I could, and Pink October was invisible to me.

I still have some years left to enjoy - many people at 60 are active and world travelers and starting new things, why not me?  I started planning on getting my body strong - finding yoga classes, eating something aside from sugar. I have grandkids and future grandkids I want to play with and babysit and take places. I hoped that neuopathic and bone and post-surgery pain would disappear after I'd been off chemo for a while.  I figured it had taken me 9 years to get here, so improvement wouldn't be overnight, but I was hopeful with the changes I was already seeing.  Maybe I'd have surgery to fix my mastectomy, which is scarred and uncomfortable.   Maybe I could fix my damaged toe and walk better.  I was thinking of travelling to see my out-of-town relatives and visiting my son at his new job at facebook.  Driving 3-4 hours didn't seem as nauseatingly painful as it had before.  Maybe I could find a part-time job. Maybe I could become organized enough to do something aside from my hair appointment.

Maybe....maybe....maybe.......

Maybe I have options.

I felt healthy.  Normal.  Excited!

It's kind of amazing how quickly you can get over something that has occupied your mind and body for so long, but I did.   It's beautiful to feel this good, like a normal person must.   I truly believed I was cured.  I was flying high as helium balloon.

My next doctor's appointment rolled around. I wondered what the "options" were: would he say that I should go back to herceptin, or just not do anything and see him every few months for monitoring? Maybe have PETs more often?   This wonderful doctor who has been with me so long, whom I trust and respect; he didn't realize I'd misunderstood him, that I'd taken an off-hand comment and turned it into my new life.  He didn't know he had a pin in his pocket and he was about to pop my bubble of denial.

Go off treatment? He said, surprised   It is my body, of course, I can do what I want, he assured me. But he has never in his 26 year career had somebody not relapse with metastatic cancer, even the people on Kadcyla. Options? He meant a new anti-nausea or a daily Nexium.  He has always had a way with words, and he said about my longevity this far, that I am a "biological odd duck" and reminded me I have done so well on all of these treatments, but he doesn't have any patients who do well off of them. He brought his message home when he said that he has people who come to him, begging for something to help them - and there is nothing. He has to tell them no.  I am a success story, a rare one, but that does not mean I am cured, or that he'd recommend I ever go off treatment, or even that it will work forever.

I'm as terminal now as I have always been.  Pop.

Who am I to take what others want so desperately and throw it away?

Here I am, alive to see all those things I'd hoped for when I was diagnosed. My life over the past 9 years flashed before my eyes: my son's high school, then college graduation.  His settling into a job.  My oldest son finding his career, his beautiful wife and their plans for family.   My stepdaughters marriages, and now grandchildren.  And, who knows what more may come?  My husband and I celebrate 25 years of marriage next fall.  All of that I would have missed had I not done chemo. I'd be a faint memory by now, an empty chair at a wedding, a dusty photo on a shelf.

I've been given this gift. This very difficult gift.  It's wrapped in ugly paper with pictures of death, razor blade ribbons, and is so sharp you are covered with papercuts.  Yet inside is my life.   The chemos have worked for me.  I may not be healthy, but I'm functioning.  Do I want to stay alive, albeit in a diminished capacity, or do I want to have a few healthy months and let it go?

My best friend says she'd take the latter.  She'd let herself die.  I don't think she's thought it through, as death from cancer isn't friendly.  She also believes I live through others - the good things in my life truly belong to others, like my children's marriages or graduations.  But that is who I am, a person who cares for those she loves and takes pride in their accomplishments.   I'm not sure what accomplishment means in her mind, but I don't have to understand.  I just know I live in my head more than my body.

In reality, nobody knows what they'd do when actually faced with choosing between life or death, I don't take those opinions under consideration. As I have learned, it's a lot different being faced with an actual problem than imagining it.  There are very few who do not want the precious time they have and give it up readily.  That, of course, is different than accepting your fate when there are no choices.

The things I'm happy for may not be my accomplishments, but I take joy from them anyway, seeing grandchildren, seeing my children succeed. My eldest son lives a mile from me and I want nothing more than to be a grandma a child can actually see and know.   Heck, I want to fix my husbands phone for the 20th time. That is my life, and I want it.

So, I had an emergency chemo session this Monday, and I've had a migraine for two days and already can't eat.  There was no holdover from my days of health.  Now I'm hoping that during my little health fantasy, being off treatment, I have not allowed something ominous to start growing.

To live, I must live on these drugs.  And that simply has to be enough for me.


Frizzy Hawaiian Hair



Sunset


*********
Two things:  

Remember when I told you about Healthline's Breast Cancer App?  Well, if you haven't downloaded it yet, now is the time.  They are having live chats on a variety of topics, and I'm sure it is helpful and fun for many.  It is available in both the Google Play store and iTunes store, for free.  Get it now and you may see me there.

Also, if you are shopping on Amazon this season, please use this link:  https://amzn.to/2E59Z3K.  If you click through from here, anything you put in your cart and purchase in that shopping trip gives me a small stipend.  You can cut and paste that link and use it anywhere and it should do the same thing.  It has been very helpful to me to get $20.00 or $30.00 a month to spend but nothing has come through in months. My fault - that's what you get when you don't blog!  I'll try to do better.

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.

Love,

Almost 60!
Ann



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Thursday, July 6, 2017

Living Eight Years On Chemotherapy

"Hold your breath."

My nurses always say that before they stick the needle in, a habit they can't drop.  When it's a needle in your arm, they say "little stick." When it's in your chest port, it's "hold your breath."  I guess it makes the port stick out, or helps with the jab or something - I don't know.  My port is in my arm and holding my breath does nothing, but they always say it anyway, then apologize.  Habit.

The drip starts and I sigh.

I have a sick cat.  Ironically, I have to give her Sub Q fluids twice a day - a drip bag exactly like mine with the added bonus of three IV meds delivered in the bag port. Reminding her to told her breath won't help - she has taken to hiding in a closet because she doesn't like the needle stick.  People though, we obediently hold our breath.  We don't hide, we walk through the doors to face the discomfort, and even sometime bring our nurses gifts.

Cats are clearly smarter.

A few weeks ago I'd had another scan, and I'd gotten the results from my doctor.  I'm still NED. We were happy, both my doctor and I. But then ... I realized that I may be on this chemo for more years, and if not this one, another. My doctor has said that I am having a neurotoxic reaction to this chemo, causing bone aches, severe fatigue, stomach pain and headaches.  But it's working and he has pulled back as much as he can, stretching times between chemos. We went from every three weeks to every month, and he doesn't feel comfortable doing less.

When  he told me I was still NED, after our smiles faded, I nearly burst into tears. It hit me really hard that this was going to be my life.  Chemo drips and appointments are one thing, but living on a drug that causes pain, anemia, fatigue, neuropathy and toxicity - for 3 weeks a month, for the rest of my life - is quite another.  For literally three weeks after my infusion, I'm quite sick and can barely get out of bed.  I sleep over 18 hours a day.  Everything hurts and the strongest drugs don't really help.  I can't get dressed, or eat.  That last week is when I feel more normal and want to do things. My brain starts up again and I plan - I want to shop, clean, plan a vacation.  But then.....I have to get out of the closet and I have to open the chemo door, and I have to start all over.  I always hope it'll be different this month  - and it never is.  It's not much of a life.

I asked him, "What happens to your other patients who have been on this chemo for years; how long can I expect this?"  He looked at me sympathetically, knowing what I meant, and said something hair-raising, "Nobody in my practice has lasted as long as you on this drug without a relapse, you are the canary in the coal mine."

Chirp.

Two years on this drug.  I've now made it six full years with metastatic cancer to the liver and abdomen and lungs. My original cancer was discovered 8 years ago, and I barely finished treatment before I started again with mets, so in reality I've been on chemo for pretty much 8 years straight, with a time out for just perjeta/herceptin/zometa only.

I wonder if I can even blame the Kadcyla for the way I feel now, although I don't know since I've just started down the coal mine path.   I think my body is just finished entirely. It is telling me that 8 years of chemo is enough for me.

Eight years on chemo.  Is that enough?

People (rightfully) complain when they have four or six rounds - four months worth.  I've had hundreds of rounds.  I know I'm not the only one but google it - you won't find many.  I am in an elite group.

I don't believe it is possible to describe what that is like, either physically or emotionally.  My doctor saw it on my face and he sympathized when I pathetically whined, "Will I ever be done?  What if I'm NED still in a few years?"  He said, "You are almost worse off than somebody not NED.  You're in the same treatment but are always waiting for the other shoe to drop, never knowing when that could happen but knowing it will. We can talk about stopping though, if you are stable in ten years."

Ten years.  I do not think this is possible to do for ten more years.  Is that supposed to be hope?

I understood, having been there - at least when your cancer is growing you are "fighting" for something. You are being brave.  When it's not working, you switch to one maybe less uncomfortable or more uncomfortable, but there is a reason.  The pain has meaning; you are desperately fighting for life, for time.  Now?  It's a way of life.  One my doctor clearly believes I'll never be finished with.  I have achieved the goal of life at least temporarily, but I'm ungrateful - it is not the life I expected. I have won - I'm the person everybody with metastatic breast cancer wants to be - a person who has had years. I have also lost.  It is a life in which I am still breathing, but in which I cannot do most things, enjoy much, and one in which I depend on others for everything.

Is it possible that I am stuck in survival?

These six years have been the longest of my life but here I am with more stretching in front of me. My days are empty, just sleeping, discomfort and so tired.

And yet....there are those moments of joy - I've experienced weddings and babies and happy times. More will come: my stepdaughter is pregnant and we will have a new baby in November. Another stepdaughter is getting married, and my oldest son is planning his family. Next year my youngest will graduate from college, and all those things are miracles that nobody thought I'd be here to see.

But who expects their life to be only those things?  Can one live for only the miracles? Is that good enough?   I'm no longer sure.  I miss doing laundry and shopping and cleaning the kitchen, going to a restaurant, just the simple things that I don't feel healthy enough to do.   My life has been pared down to only a few days a year.

My little cat is 18.  Her kidneys are in failure.  They say that cats are so well taken care of now that they outlive their kidneys.  Like a cat, it is possible that we have learned enough about treating cancer that we are creating people who are outliving the lifespan they were supposed to have?  We can keep people going, but don't know enough yet about how to keep the side effects of treatment at bay.

My cat - it is time for her to go but we are doing all we can to keep her going to see my son once again; her moment of joy.  Who better than I to know that some suffering is worth a future happiness? We found her as a 3 week old kitten in the middle of a street when my son was 2.  She was dehydrated, her tongue was cracked and I nursed her to health with a liver paste she licked off my finger despite the pain. We have had 18 years of her purrs.  After her treatment, she is clearly doing much better than when she was diagnosed - she's eating, bright-eyed, using the catbox and not collapsed like when we brought her in to the vet.

But she sleeps in a closet all day.

Is she happy?  Is she living a cat life?

Am I living a people life?

It will not be long until I take my kitty in for that final shot, I know.

There is no final shot for me, at least until I make the choice to go off treatment and let the cancer come back, as all believe it inevitably will.  Who though, gives up in the midst of success?

It is not easy being a canary.  All eyes seem to be watching me, waiting to see how much I can take before I keel over.  But because I have been given what so many others were denied, I don't think I have a choice but to hold my breath and go on.  





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