Bits n Pieces

I haven’t blogged for a bit. Life is pretty much back to normal. We have had a few household projects, the main one being redoing my office. I should say transforming my former junk room into a workable office space. It was one of these rooms that anything I didn’t know what to do with would get dumped in.  I had one small bookcase groaning under piles of books and more piles in every corner.  This summer when we redid the bathroom we sacrificed the office closet and that left us with some extra wall space, which is now sporting new bookshelves. I spent all weekend sorting, dusting (good Lord where does it all come from?) and re shelving books by author and genre. I made room for some of my sister’s books as well (she got two whole shelves!) and even parted with a small stack of my own (baby steps… I have a hard time letting go of books). Found homes for all the assorted “stuff” and organized my workspace.  I now have a combination library/office and the best part is I actually had the energy to work for two days straight instead of a few hours at a time and then having to recuperate on the couch.  At my last oncology visit I was told the chemo was all out of my system and I’m finally starting to feel like that is true.  Just a little post chemo weirdness though.. my eyebrows fell out again.. not all of them, but they became noticeably thinner and now have returned. My eyelashes completely fell out twice since returning.  I wasn’t aware that could happen but a little googling tells me it’s not that unusual and it will likely happen a few more times.  My fingernails never peeled or got terribly discolored though  that is a pretty common side effect of the chemo I was on. I kept them short and with layers of polish to keep them strong. Now, however, I have white lines in all of them and one thumb nail looks bruised.  All of the nails are peeling but from underneath. As long as I keep them polished they look fine.

I just realized tomorrow is the anniversary of when I discovered the lump that got me into this mess.  Maybe I’ll bake a cake. Or have a drink to celebrate.  Actually I probably should celebrate the fact that I found it.  Or not.  Most likely, not.  My doctors haven’t use the words “cured”,  “cancer free” or “NED” (no evidence of disease). I’m not sure when or if I will ever hear those words before the 5 year mark (countdown started after I finished treatment and began Tamoxifen.. so five years from September, 2012).  I have my first post diagnosis mammogram scheduled for November 12. Maybe I can get a little Ned out of them then.  I am prepared to be told there are changes from last year. I should hope so considering I’ve had surgery and radiation since then. Unfortunately that won’t make it any less scary to hear, I’m afraid.  And if the radiologist utters those words, regardless of what the changes are my doctors are obligated to follow up with more tests and then I get to wait on results again. I’m starting to get that I won’t feel free of this for many, many years, if ever.

I am flying for the first time since surgery this upcoming weekend. In preparation I visited the Lymphadema Clinic and was fitted for a sleeve and glove.  My doctors never said much about the need for this but I requested a referral. I was sent to P.T. where I was told compressing the arm if I’m not already having trouble would cause more harm than good (makes sense). Since I had heard that women who previously had no problems did when flying I asked if I could have a sleeve just to bring along as insurance and promised I wouldn’t wear it unless I needed to.  The physical therapist agreed and set me up with the Clinic.  At the Clinic I was told I HAD to wear the sleeve when flying because once I had problems they wouldn’t go away.  She then proceeded to explain all about lymphadema.  Who needs that!?   I have had no problems at all, but I only had one lymph node removed and I’ve been pretty diligent about exercising the arm and following as many precautions as I can.

 
In other news, I’ve finally narrowed down my tattoo to 3 choices.  As of this weekend it was 4 but I decided against f*ck cancer in a fancy script.  As I’m going to be a grandmother, that would be unseemly.   I know I’m a bit off schedule having insisted I would get one before I turned 50, but I couldn’t commit.   I’ll be in Austin next week. Where better?

These are the 3 top contenders.

The forget me nots in honor of my sister.

This means Survivor (too cliché?)

Care to vote?

Speaking of voting… robocalls are the devil.  We have one registered Republican, two Democrats and an Independent at this address and we all voted early since we will be away on November 6. These calls are driving me batshit crazy!

Just had to get that out.

Searching for love in all the wrong places?

It’s not often I blog twice in one day but this was too good to pass up. I was looking at my blog stats and clicked on search engine terms and on 10/17/12 someone found my blog searching with “strip me to the waist and use a whip on my back”.   First.. eww really?  Second.. bwaHAHAHA.. can you imagine their disappointment?  I was hoping to find more but the rest were pretty legit searches for blogs dealing with breast cancer, chemo and all the rest.  Oh except someone searched “using brouhaha in a sentence”. Is it weird that it makes me a little proud that my blog came up in that search?   I wish someone would search shenanigans now.

I wonder who else isn’t reading my blog

I already know which of my offspring doesn’t and have stored that information along with my Christmas shopping list and will revision. I know my doctors don’t because none have dropped me from their practice and/or apologized for prompting me to complain in what was going to be a positive blog about journeying through breast cancer.   My husband would probably read it more often if I added some obscure music facts and/or video.  Yesterday I found out someone else hasn’t been keeping up with me. Paula Young Wigs. I got an email asking why I hadn’t made a purchase in a while and offering me incentive to come back.  I immediately started to fire off a reply that I no longer needed a wig because my hair had made a triumphant return!  Luckily before I hit send I realized the people at Paula Young not only don’t care why I needed a wig to begin with, but would be even less interested in why I don’t.  Then I started wigging out (see what I did there?) about the so called quality of these wigs if they expected me to have replaced them already.   I mean, I had one freebie from the ACS and bought two myself so I would have some variety. How many wigs does the average wig wearer own and how often do they need replacement?  If I sold wigs I would sell them in days of the week packs like the panties we used to get as kids.  I’m telling ya, nothing could screw up your day more than wearing Thursday’s underwear on Monday.  Maybe that’s not such a good idea after all.  Women who are wearing wigs because they’ve lost their hair to chemo or other medical conditions have enough stress.

Back to the panties for a second.. I always figured they were a good idea for kids.. reminds them to change every day.  Now I see they make them for adults too and I’m entertaining myself with possible reasons why.  If my underwear say Monday I am supposed to be at the office….

Oh! They also have them for men. Now that’s probably a good idea.

Grit and Grace


Last night we saw the Glen Campbell Farewell Tour at the beautiful Merrill Auditorium in Portland, Maine.   The show was opened by two of his children who are part of a trio calling themselves Victoria Ghost.  The three of them, along with another son (the drummer) are also part of his band.  Amazing talented offspring.   If you were not aware that Glen was suffering from Alzheimer’s you might think he had had a little too much to drink. It made me sad thinking about how many times he may have humiliated himself and his family before the diagnosis, how many fans may have turned away, at least temporarily. With the help of teleprompters he remembered most of his lyrics. When he got stuck the audience would sing along or he would turn to one of his children.  He mentioned he was in Portland, Maine at the beginning but then kept giving shout outs to Portland, Oregon.  To be fair, I’ve seen other performers make mistakes like that, simple slips of the tongue that can be expected when you wake up in a different city every day.   I have to admit, before I saw him,  my cynical side was wondering exactly who this tour was for. If he was so far gone into his disease, how could it be for him? Would he even remember?  Were his handlers just trying to make a few more bucks off this legend while they could?  Seeing how his family cared for him on stage and how genuinely happy he was to be there dispelled all of that.  His kids and the rest of the band handled his gaffes with humor and grace. They gently brought him back to the moment.  He joked around about his memory, he teased his daughter and was wife who was off stage.  He just beamed with pride at all of them.   He sang all of the favorites; Galveston, Rhinestone Cowboy, By the Time I Get to Phoenix, Wichita Lineman, Gentle on my Mind and some I hadn’t heard in years like Where’s the Playground, Suzie?.   Two that were really powerful were True Grit (he claims he made John Wayne look so good he won him the Oscar!) and It’s Your Amazing Grace.

True Grit

One day, little girl, the sadness will leave your face
As soon as you’ve won the fight to get justice done
Someday little girl you’ll wonder what life’s about
But other’s have known few battles are won alone
So, you’ll look around to find
Someone who’s kind, someone who is fearless like you
The pain of it will ease a bit When you find a man with true grit

One day you will rise and you won’t believe your eyes
You’ll wake up and see, A world that is fine and free
Though summer seems far away
You will find the sun one day

It’s Your Amazing Grace

Everything I have in this world
I give it to you
Everything I see in this world
I see it through you, oh yes I do

You’re all that’s in my heart
You’re all that’s in my head

You know I believe this
That your amazing grace
It’s your amazing grace
Yes it is

I hold my head in my hands and I cry
When I think of you
Amazing grace
Keeps us together

You’re all that’s in my heart
You’re all that’s in my head

You know I believe this
That your amazing grace
It’s your amazing grace
Yes it is

I hold my head in my hands and I cry
When I think of you
Amazing grace
Keeps us together

When I started this blog, the first thing I did was seek out blogs of other women going through breast cancer. There were many. And then I found blogs of caregivers, men with cancer, mothers blogging about their children with cancer, women with cancers that are largely ignored while they are constantly  bombarded with breast cancer awareness.  I cannot start my day until I check in and read what is happening in their lives, how they are doing with treatment or how life is beyond treatment.  They run the gamut from heart wrenching, funny, inspirational,  uplifting, sarcastic and cynical.  One thing they all have in common is true grit and grace and I’m so happy I’ve found them.

How to (re)train your brain

Are you suffering from chemo brain, age related dementia, permanent brain damage from doing this   during presidential debates?  Is your give a shit broken and you just can’t seem to learn new things?  Well, have I got a deal for you!  A FREE website to retrain your brain. Just sign up and play a few games especially selected for you  http://www.lumosity.com   And by free I mean you can play for 5 minutes but in order to unlock the full glory of your brain it’s gonna cost you.

Yeah, so I signed up last night thinking it was just another free game site (like I need another time suck) and (I kid you not) when I tried to sign in today I could not remember my user name and password. Phew! I found this site just in the nick of time apparently!  Just signed up again and after answering a bunch of questions was  given 3 games to play.  After scoring, apparently there is an 87 percent chance I can improve based on my age and awesome skills.   For you math geniuses that means there is a 13 percent chance of me forgetting my user information again or deciding my broken give a shit is not on the short list for repair. I’m good with being in the minority.

No going back now

I have been saying since my hair came in (first white, now a mix of gray, silver and black) that I was done with coloring. It is what it is. After nearly a year of harsh chemicals flooding my body, radiation and a five year commitment to Tamoxifen and all of it’s lovely accompanying side effects, I’m just not feeling the urge to slather smelly color on my head every 4-6 weeks. For that matter, I’m not going back to many of the products I’ve used in the past.  During radiation I started using Tom’s natural deodorant.  Once you get used to not smelling like a meadow at sunset or a tropical beach it’s not so bad. If it’s safe to use during radiation, I’m good. I am slowly cleaning out my environment as well as what goes into and on my body. Will it prevent a recurrence?  No idea. Did I get cancer because of my dying my hair and using deodorants with aluminum and parabens? No idea.  I’m even cutting back *gasp* on alcohol.  Okay.. that’s not that hard. I drank very little through the months of treatment and after an emotional week around my sister’s birthday when we had several evenings out, averaging about 2 drinks a day,  I really felt kind of sick by the end of the week. I don’t have to be hit over the head with a swizzle stick to know why. I’ve given up diet soda and my caffeine intake is pretty minimal.  My diet was pretty good otherwise, lots of fruits, vegetables, grains and protein but there is a lot of room for improvement (always).

Oh yeah.. back to my hair and the reason for this post.. the reason there is no turning back now is my license is due for renewal this week. Yeah.. I get to have my picture taken at the DMV while just getting my hair back after chemo.  That’s gonna be a whole lot of forehead.  DMV photos are so lovely to begin with. This should be good. I could renew on line but I haven’t looked like my last photo (2006) in a while and never will again. My hair is long and black. I was about 25 lbs heavier. Anyway, feel sorry for the clerk, I will have no shame in playing the cancer card to get her to take my picture over (and over if need be) if it’s as bad as I anticipate. Wish me the DMV luck.

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A break up is imminent

 

Dear c,

After a 9 month whirlwind of mammogram, ultrasounds, biopsies, surgeries, heart scan, bone scan, chemotherapy, radiation, uncertainty, fear and exhaustion I am cutting you loose after my last dose of radiation on Friday.   I am giving you more notice than you gave me, btw.  You’re welcome.

Obviously this relationship was doomed to fail from the beginning.  I never even respected you enough to call you by your favorite title.. “the Big C”. You’re nothing but a little c to me.

I’m over you.  I’m not taking your calls. Oh sure, our mutual friends at the Cancer Center will want to get together periodically and reminisce about our relationship.  I’ll humor them. It’s the least I can do after how hard they fought to get me away from you. Eventually they will grow bored and our visits will be fewer and further between until you will be nothing but a footnote in my book of life.

So long, c. It’s not me, it’s you.

My Bucket List

I have been working on a bucket list since long before my cancer diagnosis and, I imagine like all cancer patients, decided I had better get serious about the thing. What follows is a work in progress. The items that are crossed off were not realized, but simply thought better of since it is apparent I will, in fact, live.

Get a tattoo before I turn 50  (I still have 2 months, get off my back)

Last 2.7 seconds on a bull named Fu Man Chu (that’s a stupid song anyway)

Get a red mustang convertible.  (I didn’t really want one that badly until my husband bought himself a sporty little BMW this summer. Someone clearly lost sight of who has cancer in this family.  Yeah, yeah, he says I can drive it whenever I want but he always checks when he gets home to see if I did.  I caught him chalking the tires the other night)

Have more patience.  (a work in progress)

Get published (does this count?)

Get arrested See above.  I figure a good writer has to have something interesting to write about.  I hadn’t worked out the details of my arrest, but I know it would involve much hilarity (and liquor). I bet at least one of my cousins (Ann :)) would have taken one for the team and joined me.

Become a grandmother. (Kids?  I can’t do this myself)

Travel more.

Clearly the list needs work, but I’m in no hurry to finish it.   The only thing my bucket is going to be used for this next week is ice to chill the champagne. 

Chemo cookies.

Ever think something is really funny until it’s not?  Just after my first round of chemo my mother gave me two big tins of ginger cookies (this was just after Christmas). I had picked up some crystalized ginger for nausea and she thought munching on a couple of these with a cup of tea would help too.  The ginger still sits on my counter all these months later. I’ve eaten maybe two pieces. One tin of cookies made it back to my daughter’s dorm and the other still sits in my dining room, largely untouched.  One day my husband reached for them and I overheard my daughter say “you cant’ eat those.. they are mom’s chemo cookies”.  I got a good laugh and some evil ideas.  Since that time if there is say.. only one stick of gum left I will say “I need that for my dry mouth”  hence our newly termed “cancer gum”.  It’s much like drinking the last cold beer on a hot summer day.  Nothing tastes better, especially if you know someone else (chemo cookie coveting husband) wanted it. I will sometimes (legitimately) ask the girls not to drink the last ICE in the house. This is a fruit flavored carbonated water with no calories, sugar or sodium that I love and there are days when it’s the only thing I want to drink right after a treatment.  Mostly though, nothing is really just for me. It’s all fair game. Until I want to mess with my husband and will claim chemo ice cream. This all got me to thinking about all the products out there sporting pink ribbons and how people will go out of their way to buy them when realistically they do nothing for cancer awareness.  Unless when you eat them you feel an overwhelming urge to donate or hug a cancer patient.  I mean.. who is not aware of cancer?  But.. you have to admit it is marketing genius. Which leads me to mention that if any of you marketing geniuses are reading this and think that’s it! Chemo Cookies! Cancer Gum!.. don’t do it. It would be morally and ethically wrong on so many levels. And also.. if you do, I want a cut.

Cookie?

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Good News, Bad News

The good news? Self inflicted carpal tunnel is not a reason to stop chemo early.  The bad news?  I have no excuse to stop chemo early. Ha!  Actually I told my oncologist that I wanted to continue after coming this far and she agreed.  My numbers were looking good and my hemoglobin is on the rise and I’m already feeling it. I have no idea how low it got because each week I’m told my numbers look good. I assumed that meant I was some kind of hemotologic savant, but apparently all it means is they haven’t bottomed out yet so lets see how sick we can make this chick before she cries uncle.  I will assume my all time low was week six. That was the first time I really felt the full effects of all of this. Week seven (last week) was much better with only one bad day physically and one day when I was doing an internal one woman rendition of Camille Image.all day. It was all very dramatic and silly.   Sunday and Monday were really good days. I visited with family, got a lot accomplished at home, did errands and bought some beautiful plants to start working outside as soon as I can.  Next weekend we have two daughters graduating ..college and grad school!, Mother’s Day to celebrate and lots of family time. I’m determined this will be a good week and I will have plenty of energy to enjoy the weekend (by that I mean I plan to spend the next few days doing as little as possible so I can fully enjoy the festivities on the weekend).

Only 4 more treatments left. I had my favorite oncology nurse in the lab today.  She took my port virginity so we have a special bond. Actually they are all pretty great. Except for that one redhead whom I have never seen again. She must have been filling in or was fired after stabbing me in the chest accidentally sticking the needle in some part of my anatomy other than the large bullseye with all the scarring from previous needle sticks. Honestly, I can see how that could happen. If you were blind.  After she offered to try again and I said “oh hell no! Sorry, you need to get someone else, you only get one shot to kill me“. She brought in a supervisor who slipped the needle in effortlessly. Before she did she asked if the skin was still numb from the spray they use. I said “Not as numb as that one”. We all laughed uncomfortably and I made a mental note that it’s probably not a good idea to insult people whose job it is to stick large needles in your chest.  I’m usually pretty good about keeping my internal running monologue to myself but sometimes my filter slips. And sometimes I only pretend it slips.  That chemo brain has to come in handy for something.

Off to watch the voice and root for my girl, Juliette!  Image