Treatment

Chemotherapy, radiation and hormonal treatment for breast cancer

Don’t ask

Posted on by mainelyhopeful

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Oh, I don’t mean you. You can ask me anything.  Don’t Ask is the red banner I imagine has been placed prominently across my medical file and/or employment files at my local hospital.  I had my 6 month check with Oncology yesterday and all is well on the cancer front, though apparently I am working on an ulcer. Maybe.  Or more likely my body is just reacting to the absolute clusterfuck my life has been for the past 18 months or so.   While discussing the possible causes of the stomach pain I’ve been having (yes.. I “went there” and anyone with a past diagnosis of cancer knows exactly where “there” is) and how I’m not sleeping much these days, I mentioned my husband had recently passed away.  It was exactly a year ago since she asked how my summer was going and I reported that my sister had just unexpectedly passed away.   Her face.  I almost felt sorry for her.    I was told I am doing “remarkably well” whatever that means.  Am I supposed to open a vein every time I tell someone new?  Wear widow’s weeds?  Image

As I was leaving she mentioned again how remarkably well I seem.  I told her I had no choice and she said “you can always crumble”.  I told her “not yet”.  Besides I got shit to do. I’ll schedule a break down for another time, thank you.

Last week I had a job interview.  The first step was a telephone interview with all of those ridiculous getting to know you questions.  Then I got to do it again face to face.  Things were going well until the interviewer asked “what is the biggest personal challenge you have had to face in the past year and how did you handle it?”  So, I told her.  Tissues all around.  This could go either way.. a pity hire or a big red banner across my file that says. Don’t Ask!   I’m okay with either.

I used the kitty graphic because those crazy eyes are exactly how I feel these days but the graphic below speaks to me.  I hope it speaks to you too.

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Hypochondria.. another fun side effect of cancer

Posted on by mainelyhopeful

hypochondriac

So, I’m done with cancer, but is cancer done with me?  On Thanksgiving night I pulled an abdominal muscle.  The pain went all the way through to my back. I knew I pulled a muscle. I felt it.   For the next 10 days I would feel the pain if I stretched or turned the wrong way. It would sometimes be worse in my upper abdomen, sometimes in my back or rib cage.  It would stop me in my tracks at times and a deep breath could bring me to tears. There’s not a whole lot that can be done for a pulled muscle so I never tried to get in to see my doctor.  I just suffered silently (ha!!).    Okay in the interest of full disclosure I may or may not have mentioned to my family that I should probably go to the ER, if I screamed suddenly they should just ignore me, and that I likely had a few cracked ribs, but I’d probably be okay.   They got off easy… I was treating myself to much more dire internal commentary.  What was that tearing feeling?  An abdominal aneurysm?  Wait.. is my liver enlarged?  If I do have a cracked rib.. why?  Bone mets?  Am I being paranoid?  Wouldn’t a brain lesion cause paranoia?  I also was sure I had gall bladder disease and maybe biliary colic (what’s biliary colic?.. I have no idea but it sounds impressive).

As of  today, I think I will probably pull through. I can only feel the pain if I force it.  I’m sure I’ll pull another muscle with all these crazy contortions I’m putting myself through to see if I can reproduce the pain proving it was indeed a pulled muscle versus needing immediate surgery for some kind of internal injury.

p.s.. hypochondria is a recognized medical condition.  So I’m only a little crazy.

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Waiting to exhale

Posted on by mainelyhopeful

I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis.  I don’t recall ever having to wait more than a week for results before.  Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming.  I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone.  I called the cancer center yesterday and left a message which was finally returned this morning.  All clear.  I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram.  I know they are read the day of the test or the next day at the very latest.

No one on my team of medical experts has used  the words “cancer free” yet. Or even “no evidence of disease”.   Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!  

Just a quick post from sunny Texas!

Posted on by mainelyhopeful

Here on vacation with the boy and his missus who are awesome hosts as always.   The weather has been gorgeous! I was worried that my chemopause would make the heat unbearable but that hasn’t been the case.  It was only really hot one day and by evening was beautiful.  Apparently there is a Nor’Easter brewing at home. So sorry to be missing it.

I dutifully wore the compression sleeve while flying and had no problems at all. Maybe I wouldn’t have anyway, but why risk it? I’ll wear it on the flight home as well.

I am now able to cross one more thing off my bucket list. I got my tattoo on 6th Street in Austin on Monday.  I used a very scientific method to choose the parlor/artist. I picked the building with the friendliest looking storefront.  It was amazingly clean and bright.  I’m not sure what I expected but I felt like the whole process was more sterile than my medical treatment at times. The artist, David, was covered in tattoos and piercings (of course) as was the rest of the staff.  He was great, explaining every step, offering to stop if it hurt too much, and fast!  He sent me off with better skin care instructions than my radiation oncologist. Go figure! Just goes to show you should never judge someone by their choice of body art.  If you are ever in the Austin area, looking to get some ink (doesn’t that sound badass?) visit Affinity Tattoo and ask for David.  He won’t even question the fact that you are a 50 year old conservatively dressed woman with her husband and son along for support getting your first tat. No judgment.

p.s. it really didn’t hurt. It didn’t feel good, mind you, but I wouldn’t call it painful.  Maybe biopsies and endless needle sticks have desensitized me to pain or maybe I was just too excited to be getting the tattoo but it wasn’t bad at all!

As for the rest of the bucket list.. I’m working on it and while my bucket list isn’t all that long, my fuckit list grows daily.

Check out the chemo curls!  Still not long enough in the front to cut and style, but it’s getting there!

I went with the forget-me-nots. The skin looks angry and red, but that didn’t last long at all and it looks great now! Didn’t he do a great job?

Bits n Pieces

Posted on by mainelyhopeful

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?

Posted on by mainelyhopeful

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

Posted on by mainelyhopeful

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

Posted on by mainelyhopeful


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

Posted on by mainelyhopeful

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.

I’m not even joking about the PTSD

Posted on by mainelyhopeful

Okay, maybe I am a little.  I don’t suffer from the kind of PTSD that has me diving under tables, self-medicating with drugs bought off of sleazy characters in back alleys or laying awake staring at the ceiling every night. Instead I have these little flashbacks of the past year that leave me feeling a little sick to my stomach or with a lump in my throat.  The next several months (ie. the entire holiday line up from now until July 4th) is one long anniversary of cancer.  I found the lump October 30. Happy Halloween.  I had surgery the week after Thanksgiving and started a 6+ month course of chemo two days after Christmas. New Years was spent sick and in pain from the first infusion. I started radiation the week before July 4 and that lasted the entire summer.  In every family photo celebrating holidays and birthdays I am either wearing a wig or a scarf.  Every celebration was wonderful, but I was exhausted or not feeling well through all of them.  Concerts, movies, even simple dinners out had to be planned so I could rest up a bit ahead of time and I always came this [] close to canceling, but never did.  I decided no matter how I was feeling to take the words “fake it til you make it” to heart.  99% of the time my attitude is positive, but then I have a precancerous polyp removed and a wonky pap smear and what would have previously elicited only a mild concern gives me pause.

Now I should just be putting this behind me and moving on (and I will!) but wouldn’t  you know the anniversary of my cancer diagnosis begins during the month of Pinktober, where everywhere I look there are constant reminders of breast cancer. I have an appointment at the Cancer Center tomorrow and I suspect it will be especially obnoxious. You literally cannot leave the house, pick up a newspaper or magazine, turn on the computer or television without being engulfed in a Pepto Bismol colored haze. It’s all good. Just in case, ya know, you’ve been living under a rock and haven’t heard of breast cancer. Now you know.

I’m not suggesting you don’t wear pink. You might look really good in pink! I’m not suggesting you don’t purchase pink items. I use a royal blue spatula myself and I’m not going to judge you if you want a pink one. My favorite present after my diagnosis is still the pink afghan my aunt crocheted for me that I wrapped myself in during chemo. But that blanket was made, given and received out of love. It wasn’t part of a marketing ploy to tug on heartstrings and loosen purse strings.  Be mindful of which companies actually support breast cancer charities when you purchase their pink items and which are only using breast cancer to fatten their bottom line.  Or, instead of licking pink yogurt tops (Really Yoplait?  You can’t just donate based on sales?) make a donation to the carefully researched charity of your choice. I support the American Cancer Society http://www.cancer.org  and recently have joined http://www.armyofwomen.org/ and signed up for a 20 year research study that anyone can take part in, men or women, any age, with or without a history of breast cancer https://www.healthofwomenstudy.org Check them out.

One more anniversary to mention. Today I am 

Look what I can do!