A nice outing

 Tuesday, October 7, 2014

I did go for the yoga class, but was disappointed when I found that the teacher was sick so there would be no class.  As a "newbie" my name wasn't yet on the list to call ahead of time. However, the trip to the Oncology offices was not a wasted trip.  Far from it.  I poked around the resource room acquainting myself with the loads of reading material & brochures for various programs.  I only now feel ready to participate in some of these programs.  I don't know how people find the time or energy to do some of these things while they are in the midst of treatment.  Since the last surgery 5 weeks ago, I think I can finally begin to realize that most of this is in my rear view mirror (with help of my doctors & G-d).  For so long, one thing after another kept complicating my recovery.  I was always on alert, waiting for "the other shoe to drop" (shades of PTSD anyone?).

When I walked into the resource room, a feeling a deja vu came over me & I realized this was the room my mom & I brought my sister's wig to donate 8 years ago after she died(from the same cancer that I had).  They have a wig lending program there just like a library. I started talking to the volunteer behind the desk & we had a wonderful long conversation.  Another lady walked in who also hadn't received notice about the class being cancelled.  She had a cute little therapy dog with her.  Lily (the dog) came over to me & let me stroke her ears for the longest time.  She looked like a very small cocker spaniel-"parti" colored her human mommy told me.  I could tell she had been around for a while cause her muzzle was graying.  She showed me some of her tricks which were impressive like picking up the end of her leash & standing against a person to give it back(especially helpful for people who can't bend over to pick up dropped items).  Then the lady behind the desk said "Isn't that something how she can do all of that on only 3 legs".  Three legs? I hadn't even noticed! The lady with her then held her up so I could see her scars.  I then heard the sad but ultimately successful saga of how this had happened.  Poor Lily was minding her own business in her fenced back yard when a neighborhood dog escaped his fenced back yard, jumped into hers & attacked her viciously.  The owner ran out of the house & pulled her dog away from the attacking dog (incredibly dangerous, but I would have done the same thing).  The lady suffered 2 fractured vertebrae in the process of saving her dog. Lily's left front leg had to be amputated.  Apparently the vet bills alone were $8,000 & the case ended up in court. Sad story, but I was so glad I heard it with Lily  right there in front of me looking very content. 

After I finished in the resource room, I went to the lobby to shop.  Yes, shop.  They were having a fund raising boutique sale (purses, scarves, hats,jewelry & purses).  Apparently they will be there the first Monday of the month until the winter holidays.  Fun, fun, fun.... Mostly I just window shopped, but somehow I did justify a PINK wallet.

Trying to get back to "normal"

I've been a maniac about writing in my journal (now on volume 4 since starting in November of 2013) but neglecting this blog.  One reason is that it's so daunting for me to figure out where to draw the line between public vs private information.  In my journal I rant about my illness, my finances, my family relationships, perceived wrongs from "friends", etc.  I don't want to rant about private things on a blog.  Recently 2 people have asked me when I'm writing my book.  Me? write a book? I think I need to become more disciplined about blogging first.  I wish I had started my journal at the beginning of my diagnosis (February-March 2013, I have to look up the exact date by digging through my files of medical reports & bills which now fill a black bankers box I got at Walgreens).

A few days ago, a friend sent me a link to a "cancer memoir".  I immediately read it, primarily to get an idea of what/ how I should write about my experiences. Very oddly, it gave me a lot of self confidence because it was so poorly written.(I'm not sure I can write very well, but I know I can write better than that author)  I read it to the end, but was glad when I was done.  I ended up not liking the author very much in addition to disliking the poor writing.  I know that cancer stories should not be a game of who had it worse, it's all relative to the person who is going through it, but she irritated me by "whining" about medical issues that I considered "easy".  She also griped about how expensive it is to have cancer even with insurance (I had no insurance for about the first 8 months of my treatment)  but then talked about shopping for pretty things, eating out & traveling.  Well enough about her, what about me?

Since I last blogged, I've finished the 2nd series of chemotherapy, had 2 more operations (making a total of 3 in a year).  I now have clocked 30 days in the hospital between August of 2013 & August of 2014. I've had a couple of CT scans,various x-rays & 2 more PET scans. (Oh and yet ANOTHER colonoscopy, making a total of four in just under a year and a 1/2) I also had a ride in an ambulance leading to my 2nd operation . The most recent (3rd one) operation was 5 weeks ago.  It was a same day surgery.  I had never had one of those before.  I discovered what the difference is between in patient & out patient surgery.  When it is out patient, nurses shout at you as you are coming out of anesthesia "Wake up, wake up, wake up, take a deep breath, wake up" on an endless loop.  They irritate you into opening your eyes & breathing just to make the loop stop.  (I'm exaggerating just a little here, they were nice nurses).  They then tell you it's time to get up & go to the bathroom. Huh? Are you nuts? It took 2 people & 2 percocets to get me down the hall to the bathroom.  Before I knew it I was in the car being driven home.  I was scared & very dubious but it did work out.  Someone was here with my mom & me the first two nights, cause as you might remember I am the primary caregiver for my mom. 

The last 2 operations had nothing to do with my cancer, they were to correct & address problems connected to the first surgery when they took the cancer out of me. Everything points to the cancer being GONE! I see the oncologist every three months for a couple of years & get my blood tested whenever one of my doctors says to.  My oncologist is my favorite doctor.  I call him my quarterback cause as far as I'm concerned he's in charge.  He has a sense of humor that I like. He refers to my "52 doctors" cause of all of the complications I've had.  I don't really have 52 doctors, it's more like 7 or 8. 

Tomorrow I am going to try to take a step in the right direction of getting at least 1/2 way in shape. I've been on the sofa recovering from one thing after another for almost 2 years.  I am a slug.  I'm going to try a yoga class at one of the Oncology offices.  I figure if I bomb out I'll be in good company.  I am so not ready to try this at a regular gym or yoga studio.  I also have one more week of not lifting, pushing, pulling, carrying, etc any thing weighing more than a gallon of milk. Hopefully, I will be able to write an update tomorrow to let you know how the class went.

Upcoming topics:
The story of a tube that broke off in my kidney during a procedure last December & how it recently came back to haunt me & the fact that my medical bills have been reduced to "only" $18,000.

Confessions To A House Guest

I'm excited about even the possibility you might be able to visit, but you've never been here so I think it's only fair to warn you about a few things.

The carpeting is 25 years old & disgusting.  We would get new carpeting, but besides me being a penny pincher, who would move all of that heavy furniture? Also, I keep thinking someday we'll move and we'll put new carpeting in then to sell the house.  The carpet does clean up nicely with a yearly professional cleaning, but..... that yearly cleaning happened....10 months ago. Currently it looks like a kids party just happened here. What can I say? We spill a lot.

We have 3 cats & I know you are not a cat lover.  They will probably bother you because they can sense a non fan a mile away.  Your bedroom door will close to keep them out, but currently your bathroom is missing a towel rod.  It fell off & I have no idea how to put it back up.  The good news is that as of this minute, all of the toilets, showers & sinks actually work.

I've been stingy with the selfies cause I hate the way I look in pix, but when you are here, you'll see the real thing,the good, the bad & the ugly.  Let's just say that given my health distractions, eye brow waxing has not been a top priority. 

This is my mom's house so the decor reflect her & my late father's changing tastes over a marriage of 56 years. I like some of it, especially the things that have been in their homes since my childhood.  Some of it is just weird & there is too much of it.  I mean it's a perfectly nice house & neat & clean (mostly, on a good day) but much of it is not my taste.  I've created a "nest" of sorts upstairs in my rooms where you will be sleeping.  It reflects me & I love being surrounded by my own things that trigger great memories or just make me happy.  I hope you enjoy it!
 

I'm a collector, not a hoarder!

I have a friend who is close to making Aliyah (moving to Haifa,Israel).  She is packing everything she wants into the allowed number of suitcases  (I think it is 5).  Everything else is being sold or given away. She is shipping NOTHING. ( She may be leaving some personal items with a relative in his garage.)  She wants to start fresh.  I admire her tremendously for many reasons, one being that try as I might, I don't think I could ever start "fresh"
  I really don't own that much "stuff" (ala George Carlin) and during my last move about 10 years ago, I did almost start fresh, getting rid of about half of my belongings.  On a previous move when I still had what I considered a house full of items, the movers got there & groaned because I had so little & they were being paid by the hour, so they wouldn't make very much on my move. I guess what I am saying is that the amount one owns is in the eye of the beholder.  I think I have a lot, the movers think I have too little to bother with.
Right now, I think I have as little as I could possibly tolerate.  Everything I own fits into a bedroom & 1/2 and about 12 large plastic storage containers.  I have one large antique china hutch that has been integrated into my mom's decor.  Plus, I have all of my kitchen utensils, pots, pans, small appliances, etc. I have mementos from loved ones including my maternal grandmother's wedding dress & of all things her electric waffle iron which I am afraid to use cause of the old wiring. I know I could have it rewired, but then is it still hers? I have quilt squares that both my grandmother & greatgrandmother made.   I am an inconsistent crafter, so I have 1/4 closet of supplies.  I do still use them when I am in the right mood.  I LOVE costume jewelry & native arts.  I am a snob about sheets.  I don't have very many, but the ones I have I could never part with.  Anyway, my goal here was not to list my possessions, but to be thrilled for my friend & the achievement of her goals.  She is a true pioneer.  
An image came to mind of a wagon train traveling west approaching the mountains.  My friend would be the one lightening the load by throwing items out of the wagon.  I would be the one weeping by the trail over some chair my great grandfather made with his own hands. (I actually have one of those!)

Neil Simon & Sholom Aleichem Part Two

Upon reflection, I have a fear some may think I was making fun of my mother in my previous post.  Never, never, never!  I was making fun of the situation & of my reaction to it.  My love & respect of my mother continues though the woman she once was is getting harder & harder to find.  I will never give up looking for signs of that mother still being in the present. 
A friend of mine told me not to worry about this, that Jews look for humor in the worst of situations.  I agree.  We also never cease to find the guilt at enjoying that humor!
Several days ago I was filling up my mom's medicine containers for the week & tweeted that I needed an in house Pharmacist to help me. (I also need to keep track of my oral chemotherapy drug & other various pills I take)  I think I also need an in house blog editor.  Come to think of it, I could also use a person to fill the role of an old fashioned "wife", someone to cook dinner, run errands, make phone calls, balance the check book, reorganize closets, etc, etc, etc...... Any applicants? Just kidding,don't apply! Going through applications is another piece of paper work I don't have time or energy to get done.

Neil Simon meets Sholem Aleichem

Last week my roommate thought she saw a scorpion & freaked out.  We do occasionally get scorpions in the house & I hate them with  a passion.  My roommate used to be the one to kill them cause I was so afraid & disgusted by them.  The job of scorpion killer has fallen to me like almost every other job in this house.  I was on the phone when she told me there was a scorpion across the room.  I told her to step  on it & squish it as much as she could & that I would come with the dust buster as fast as I could.  Meanwhile, I was holding the phone between my ear & shoulder & accidentally disconnected the phone call. (They must have thought I was nuts cause they could hear my end of this conversation.  Fortunately, they called back by the time this episode was over.  The person I was speaking to had no sense of humor & no experience with scorpions.)  I got the dust buster & asked my roommate to lift her foot.  She did & what was there? A piece of cat hair! No scorpion.  My roommate went to the bathroom & came back all in a "tizzy".  Her voice was tremulous & she said she was "shaking like a leaf".  I asked why & she said the scorpion episode scared her death.  I'm not sure what exactly I said, but it was something like "Well, no big deal, it was just cat hair".  She said "Well thanks for all of the sympathy" with her voice dripping with sarcasm.(Neil Simon's Brighton Beach Memoirs popped into my head)  I was aghast.  I couldn't believe what I was hearing.  This from a woman who thinks I'm weak because I get upset about having had cancer, a broken ankle & a kidney stone at the same time.  Despite knowing better I answered "You're kidding, right?" She said no.  I said (again knowing better) "This coming from a woman who can only show me sympathy when I'm laying on the floor with a broken bone?" (Neil Simon again).  She said "Yes" & something about how she has to remind me to keep a stiff upper lip.  (You'd think we were British, not Jewish~~yeah I realize you can be both) So I say something to the effect that sympathy seems to only travel UP the family tree(OK, the fiction ends, the "roommate" is my mom).  She said "Yes".  I asked why, she said (this is where Fiddler On the Roof enters the story) "Because I am the Mama!" There was nothing to do but leave the room & laugh.  Thank G-d I get plenty of support from lots of other people. 

The "D" Word

The following is SLIGHTLY fictionalized in an attempt to protect people's dignity.  By the way, dignity is NOT the D word of the title.
I have a much older roommate who, through a series of circumstances, I have become responsible for.  Slowly but surely the years are catching up with her.  Until recently this was with glacial slowness, so slow, I had to think back several years trying to find the genesis of this dreaded "D" word---Dementia. With the benefit of hindsight, I can see clues I missed at the time.  I have an advanced degree that should make me an expert on the "D" word, but when it happens to someone close to you, an expert makes excuses just like any other friend would. Lately, these changes and symptoms have begun appearing more rapidly. 
Yesterday, some events occurred that made me realize I need to write about it to help myself process it & also maybe if there if just one person out there who can benefit from my experience I want s/he to read this.
My habit of trying to use logic  to get through to her is a hard one to break.  There is no sense in trying to use logic, it will lead nowhere. Yet, I am still finding myself in the middle of these ridiculous, going nowhere, conversations. I am learning though because more & more I just walk out of the room to try to diffuse or interrupt the situation.  This method really works.
I have started writing an "itinerary" for the day for my friend to try to keep track of what day it is and a bare bones schedule of what to expect that day & when.  It also helps to keep track of medication times.  Sometimes, I put menu for lunch & dinner on this itinerary.  (I want to work towards 2 simple choices for each meal, but I'm not there yet).  This idea came up because I brought my friend's dinner to her one evening & her first response was "I don't like that".  My inner sarcastic self silently said "You're welcome". I didn't engage this, just retreated to kitchen to get my plate.  We both ate what was on our plates.  Our diets are slightly different these days as our doctors have  specific things they  want us to eat & not eat. Any readers of this blog know I'm having some health challenges lately.  I've found I have more energy in the morning than later in the day.  Sometimes I make a larger meal at lunch time & just soup & sandwiches for dinner.  
I try not to say "Do you remember when....?"  Instead I try to say "I remember when....." Chances are when asked directly if she remembers something, she won't, but if I describe it, it becomes a familiar memory to her, tho sometimes, she still says, "I can't remember that",
I've been trying to stick to a schedule too.  If I feel the need for a nap, I set my phone alarm so I am awake for the next item on the schedule.  This avoids my crabbiness at being repeatedly awakened & asked "Am I going to get any dinner tonight?" For some reason, the alarm on the phone is less annoying & awakens me faster. 
I am being rather strict about insisting she do things for herself that she is perfectly capable of doing.  She is not physically incapacitated.  She gets around with a walking aid.  Waking me up to turn on a lamp is not acceptable! She can also go to the fridge & get her own cold drink, etc.
There are times when my friend seems aware of her confusion & says insightful things, like "It seems I went to sleep, woke up, and everything was changed".  However, those times are outnumbered by some innate need to fill in the gaps in her memory with anything, whether real or imagined.  I have faith in the stories I have heard for years, but newer additions to these stories I take with a grain of salt.
I have a great need to protect the illusion she is the same as ever.  I need to get over this.  If we have a visitor I try to interrupt some of these stories that make no sense or lead nowhere.  I usually just get a dirty look from my friend that says "Shut up!"
I've started cleaning out her bathroom because she has been self medicating with inappropriate items that may be making certain problems worse.  I'm afraid to do it all at once, cause then she will notice & be annoyed.  We keep the Tylenol in the living room because she was taking too much of it.  There are ointments & creams prescribed for one problem she has started using for other problems.  These were the first things I scooped up & put someplace else.  My friend's husband invested wisely, but he didn't expect either of them to live beyond 70 or 75. My friend is outliving their savings, but lives with the illusion that there is plenty of money.  I am tiring of explaining this to her.  I need to just avoid it.  It's hard though when she wants outside help here practically 24/7.  The outside help never says "no" or " you can do that yourself" like I do. 
The thing that happened yesterday that prompted this blog post is just too personal to share at this time.  Let's just say I needed a little of my old friend to help me through a tough day & she was nowhere to be found.  Her body was here but I didn't recognize the person inside of that body.  I wish I knew when she left, I would have liked to say good bye.