Cancer

Breast cancer

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!

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

Posted on by mainelyhopeful

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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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.

A royal fuss

Posted on by mainelyhopeful

So much angst over Kate Middleton exposing her breasts in public. And by public I mean any place a high powered lens can invade your privacy.  Last week it was Harry’s ass.  This week Kate’s breasts. Why does it seem like this is so much worse?

The magazine who printed these should simply photoshop pink ribbons over Kate’s nipples and call it a PSA, just in time for the pink washing of the world that was formerly known as October.  God knows, we need more fun pictures depicting breast cancer.  Kate will be redeemed and the magazine can cash in on breast cancer.  Win/win.

Here. They can use my ribbon. It even comes with a pretty little chain of daisies.  Fun and feminine!

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This makes me think of how breast cancer awareness ads always show perky young, blemish free (heavily photoshopped?) breasts and when someone dares show what a real breast with cancer looks like in an effort to educate women it’s deemed “shocking” and comes with an accompanying warning.  Really? A warning?

A certain glow

Posted on by mainelyhopeful

Two full weeks out from my final radiation treatment, I feel well. Still kind of tired at times. Lately I am in bed between 9 and 10 pm, where I have a standing date with Barnabus Collins via my little Kindle Fire (I still have not read one book on it and my pile(s) of hard covers continues to grow).  I usually last through one or two episodes, then it’s lights out.   I wake up feeling refreshed, no aches and pains until mid afternoon when I start to walk like I’m 90 years old.  A cat nap fixes me right up.  All in all, no complaints.

Yesterday we had a celebratory lunch at a restaurant owned by a close  family friend.  She and her daughter told me how good I looked. That I glowed.  My response was “that’s the radiation!”. Later that evening I was blaming my “glow” on hot flashes. I imagine it’s a combination of the two.  Or it could be that my new feeling of wellness actually does show on my face. In any event, it was nice to hear. Even if family and friends are contractually obligated to tell you how great you look at the end of cancer treatments.

I have been losing time again. As in I have to look at a calendar several times a week to remember the day of the week, date, etc.   I don’t think it’s remnants of chemo brain so much as time this past year, particularly the last two months, has ceased to exist in any meaningful way other than how many more months, weeks, days to the end of treatment and how many days, weeks, and now months, it has been since my sister passed away.  I’m trying really hard not to focus on how many years (!)  until I can truly say I beat this and be certain.

Can we just talk about my colonoscopy?

Posted on by mainelyhopeful

I cannot believe you even opened this.  Why would you want to read about that?  It happened. The end.

In other news, life is slowly returning to some semblance of normal. Last week I had the above mentioned date with a man and his colonoscope, which took up more of my week than it should have.  That was my first week post treatment and it just seemed like business as usual. This weekend we went out for dinner and a movie and had a great time with family and friends enjoying a lobster bake and being treated to an air show.  I realized at some point over the last couple of days that next week I can actually make plans, do as I please, be spontaneous (hey! it could happen) or do nothing at all. I was asked to accompany my mother to the coast for a business appointment and I quickly did a mental inventory of what my week looked like and it was like this  [                                          ]  a blank canvas. No appointments. No one drawing blood, inspecting skin, zapping me, poking me, asking all sorts of intimate questions that are, quite frankly, none of their business.  I’m not sure what to do with all of this new found freedom. There is a lot I should do, but once I fill that time up with busy work it’s no longer a lovely white space to do as I please in.  I want to turn calendar pages that are clean and white with no appointments penciled in. Just rows of empty uniform little squares to fill however I like.  I could get used to this.

oh! and my Bucket List is coming along nicely.  With the help of Thing 1 and his lovely wife I will be a grandmother around tax day!   I guess the rest of the list is up to me. Unless someone wants to get a tattoo for me?  No?   sigh

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9 long months

Posted on by mainelyhopeful

Today I wrapped up treatment for breast cancer after 9 long months. I still have to take Tamoxifen for 5 years and have regular followup visits with Oncology, but the biopsies, surgeries, chemo and radiation are behind me.  I celebrated by reading and baking in the sun for 30 minutes until that tiresome little voice in my head (which sounds annoyingly like my med oncologist) reminded me that my skin had been damaged enough for one summer and I get more than enough Vit D in my supplements and diet.   I will celebrate more this evening with a bottle of champagne and this weekend with the family at a concert.  Then it’s back to more fun.  Colonoscopy on Wed (btw, don’t ever mention rectal bleeding to an oncologist, even in an offhand … it only happened once, weeks ago.. kind of way or you WILL get your ass reamed sooner than you had planned), then catching up on routine health care that has kind of been sidelined, a physical, dental visit and eye doctor. By mid-October I should be all tuned up.

Cancer was actually evicted way back in November by my surgeon, but she didn’t get all of her shit out of my body until just now.  Tenants have all the damn rights, don’t they?  It occurred to me today that the last time my body was held hostage for 9 months, I gave birth to my first daughter (number two arrived slightly undercooked at 34 weeks).  This time all I get for my trouble is some scars, gray hair and a little PTSD that I’m certain a weekly infusion of  martinis will clear right up. 

There were lot’s of congratulations and a few hugs from the staff today and even “we’ll miss you”.  I had to say “no offense but I won’t miss you”.  There is a Survivor’s Day planned on Sept 8. I receive notices of these events periodically. I have had zero interest up until now.  I was told I should attend this next one and how nice it would be to see me in “happier” circumstances. Nice sentiment, but the idea of hanging out at the cancer center for anything now that I don’t have to has no appeal. Even if there is “really good food” and balloons.  Maybe I will feel differently when there is a little time and distance between myself and the good folks at the center, but not yet.

Today was also bittersweet. My sister was looking forward to celebrating the end of treatments.  I thought of her all day and missed her terribly. I was pretty sure at 1:12 p.m. I heard a big WOO HOO all the way from Heaven though.

All in all this past year has pretty much been a shit storm but I made it.