breast cancer

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

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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!

What color ribbon does imaginary cancer get?

Posted on by mainelyhopeful

In the news over this past week there have been two stories of women who faked cancer for monetary gain.  One  who faked breast cancer will be spending a year in prison with her new implants.  Hope it was worth it. In a conversation recently about this I suggested she should have been sentenced to a few rounds of chemo.  I wanted to suggest making her volunteer in a breast cancer clinic, but can you imagine being a patient with actual cancer and having that around?  I’m guessing it wouldn’t end well.  Then yesterday I saw another story about a woman faking bladder cancer.  This one got a wedding paid for by friends and family.  She was ultimately turned in by her own sister who was worried about her niece and nephew. Can you say “emotional abuse” boys and girls?  Another one back in April got her dream wedding after lying about having leukemia.

Scamming is nothing new, but scamming your own friends and family?  And letting them believe you are dying?  I can’t wrap my head around it.  Less than a week after I was diagnosed we got word that someone who I have long considered family had ovarian cancer. I can honestly say I cried over that more than my own diagnosis.  I prayed for her and asked everyone who offered prayers for me to do the same.  I asked after her often.  Ultimately it came out that it was a lie.  I wish I could say I was stunned, but I had been suspecting it for a while.  I am relieved that she is not sick. I’m happy she will not leave behind a son and grieving parents.   I kind of tabled my reaction because I was fighting my own battle and because I honestly wouldn’t know what to say to her family/friends, but now I don’t mind saying I am beyond pissed. Yes, I know it’s not really any of my business. No, I wasn’t personally affected, but someone who I love deeply was.  This person was devastated by the news that two people he loved had cancer and he couldn’t do anything about it.  He was living and working in another state while his heart was here. While I was downplaying my own struggles at the time out of a desire not to cause more stress and anxiety for those I love, she was taking the other road… causing needless stress and anxiety. I don’t know what her motive was. I don’t know if there was a pay off.  It really doesn’t matter at this point.  Some things can never be undone.

Sometimes people just suck.

No going back now

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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.

Image

What I would tell my providers….

Posted on by mainelyhopeful

.. if I weren’t such a chickenshit  so unwilling to distract them from the very important work of saving lives. 

First of all, if you are part of a “team” caring for a patient, then please pass on all pertinent information regarding that patient’s care to the rest of the team so that she doesn’t have to repeat herself ad nauseum. In my case, as far as I know, my labs and test results were shared, but other things that certainly impacted my emotional well being, if not physical, were not. Or they were and having me repeat them was some kind of test of my mental/emotional status.   The latter is being generous and I’m guessing it’s more the former.

Please read my chart occasionally. Just before a visit would be awesome if you can fit it into your busy schedule.  If YOU sent me for testing you should be looking for those results.  If I have to ask if you’ve received them and you have to go rifling through the chart to see if you have, it makes me feel a) the test wasn’t all that important to my case, so why the hell did you send me for it (at the tune of $4,000.00 I might add)? or b) you’re just not all that interested.  I realize I am not your only patient. I am not your sickest patient. I have the “run of the mill” breast cancer that elicits a big ho hum in the world of cancer treatment, but for the 15 minutes I am in front of you I should damn well be your only patient.  And you should be as prepared for my visit as you expect me to be.

If you are leaving your practice, a mention to your patients would be really good form.  When I got my diagnosis I was assigned to a team of 3 doctors. Two of the three of you had been here for only one year.   Having lived in this area my entire life and worked in the medical field (first in the  hospital where I receive treatment and then as a medical transcriptionist) I am familiar with most of the doctors, at least by name and specialty.  It would have been comforting to be sent to a surgeon with a long standing practice, however I was very happy with you and you did a great job. No complaints.  Except. You’ve apparently left the area. This is after telling me that if I had any problems in the future I could forego the referral route and just make an appointment.  You told me my followup would likely be with Medical Oncology and there was no need to see you on a regular basis but I could (and probably should) check in yearly to remain active in the practice.   I only found out you had left when my Radiation Oncologist mentioned it.  In hindsight, when I had my port out you said “No need to come and show me the scar. You never have to see me again”.  Okay then.  While I make it a policy not to get emotionally attached to someone who tells me I have cancer, a quick note from your office manager would have been nice. If I do have further need for a breast surgeon I would hope I wouldn’t just be passed off to whoever happens to replace you.  No offense to the newbies, but in the future I want a surgeon who has been here longer than five minutes and plans to stick around.   Same goes for my oncologists.

And oh, the breast care navigators. You nurses are wonderful. You are available anytime  we need to talk.  You come and hold  our hands through difficult tests and procedures.  You run support groups.   I’m not someone who would normally avail myself of a service like this. It’s not that I am unappreciative. In fact, having my hand held during my second biopsy and sentinel node mapping, not to mention getting a phone call immediately after hanging up with the doctor (who delivered my diagnosis over the phone, btw, and only afterwards thought to ask if I were alone) to make sure I was okay was more helpful than I can express.  However, sitting me down less than 24 hours after I received the news I had breast cancer and going over such things as drainage bulbs, tattooed nipples, and the importance of knowing how to draw on eyebrows, complete with a demonstration of how alien like I would look without eyebrows by holding your two fingers over your own, was not only unnecessary (in my opinion), but unwelcome. I may have been looking at you intently and nodding appropriately, but in my head I was screaming “what the FUCK!”.  I can’t speak for other women, but at that point in time I only wanted to know if I was going to live.  Without knowing whether or not I would need a mastectomy (I didn’t) or chemotherapy (I did), much of that information was not pertinent to my case at all.  Once my course of treatment was decided would have been the more appropriate time to discuss the things that applied to me. I should mention the nurse who held my hand and spoke with me over the phone was not the same who sat down with me.  I have no idea if it would have been different speaking with her.  Two completely different personalities.  

I don’t want to make it seem like I am ungrateful for my care. I’m not.  I feel like I got the best care available to me.  My questions were answered and I tried to answer yours as truthfully as I could to aid in your care of me.  However,  I’m not someone who wears their heart on their sleeve or complains about physical discomfort. Outside of members of my immediate family, if anyone asks how I’m doing 9 times out of 10 I will say “fine!” no matter what is going on with me.  I don’t complain about things that I consider minor or things that you, my doctors, have told me to expect and how to deal with.  So, when I fill out those questionnaires at the start of each appointment and mention something like daily nosebleeds for 6 months straight, brain fog, exhaustion, etc..if you brush it off, I won’t mention it again. That doesn’t mean my course was “easy”. I know compared to many people it was easIER, but trust me, it wasn’t easy. Not by a long shot.