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!


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