Navigating a new reality

lord__again_i_bring_you_my_broken_heart_by_mistress_daydream-d5g0yoi

I’ve been pretty silent on the blogosphere. I’ve reblogged a few gems from some of the smart ladies that I follow, but otherwise have not had a lot to say. Mainly because life was becoming blissfully normal and really, who wants to read about the day to day musings of a 50 year old woman?  Nothing to see here folks.   I had planned to blog on the one year anniversary of my sister’s death.  That is coming up  on July 10.  Actually I planned to reblog the post I made about 10 days after she passed.  It’s not like anything has changed in that regard. She is still gone and we still miss her.   I was contemplating an update when I see my oncologist in July.  Truthfully I don’t expect anything new to come from that visit so unless something horrifying or hilarious happened on the way to the center it would be a pretty boring entry.

What I never in my wildest imaginings expected to be blogging about is the unexpected death of my husband.  On 4/29/13 we welcomed his new grandson in Texas.  On 6/1/13 we celebrated our 28th wedding anniversary with a trip to the coast that included eating lobster and looking for “treasure” in flea markets and antique shops. I looked for things to sell in my ebay business. He looked for vinyl and other collectibles that he could display in his “man cave”.  On 6/5/13 I spent the day setting up a charity lawn sale and when we both arrived home at the same time I told him I was too tired to cook and asked him to pick up sandwiches.  He did and we had a quiet evening.  He called a close friend and talked for a time, then called his son.  About an hour and a half earlier than he normally went to bed, he announced he was “freezing” and was visibly shivering.  I felt his forehead.. no fever. He was not sweating.  He had no other symptoms.  We both went to bed and slept normally. The next morning we were planning to visit our daughter in law before she flew home (she’d been here for a funeral) so he had the day off. We both slept a little later than normal.  When I got up he was in his recliner under two blankets. I asked he if was still cold and he said no, just achy and really tired.  While I made coffee he got the paper.  He didn’t touch his coffee or the paper and at one point just got up and went back to the bedroom. I asked if he’d gone back to bed and he said “for just a bit”.  I checked once, he was on his side facing the wall.  Fifteen minutes later I heard what I thought was loud snoring and went in. He was now flat on his back. I could not rouse him. I could not move him.  He appeared to be choking so I called 911.  While on the phone, he stopped breathing.  He was gone. Just like that. The EMTs were there in minutes and worked for over 45 minutes.  On 6/6/13 @ 8:26 a.m. my life changed forever.

Within hours my house was full of family.  My kids stayed with me for  more than 2 weeks (leaving in stages).   I had some wonderful quality time with the new baby.  I hated to see them all go, but my new reality involves living alone and doing for myself. I would love to hide under the covers or sit back helplessly and let others do for me, but that just prolongs the inevitable.

On the practical side there are decisions to be made, bills to pay, I had to buy health insurance for the first time in my adult life as we were always covered under his work plan (thank God I’m through with the expensive part of cancer treatment). I’m looking for work because even though my small business is making money, working alone is very isolating.

I guess I do have plenty to say after all. Huh, who knew?  Those of you who followed my journey through breast cancer are invited to follow my new journey through early widowhood.  I promise it won’t be all doom and gloom.  As is typical in our family there have been some hilarious moments that have you laughing/crying at the same time.

Remind me to tell  you about the financial institution that had me convinced someone had stolen my husband’s identity, had named names and was insisting I file a police report.  Only to find out it was their mistake after all (which I had been telling them for 2 days).  That’s a long story for another day.

They say God doesn’t give you more than you can handle.  He can stop any time now. I’m not the bad ass He makes me out to be.

In spite of it all, I remain mainelyhopeful.

Six month stay of elocution.

How does one end a blog? Do you just stop blogging or make some formal announcement?  I started this blog as a way to wrap my head around my diagnosis/treatment (a sort of self -therapy if you will) as well as to keep friends and family in the know without endless facebook updates. I would post a link to FB and those that wanted to could be informed.  What I didn’t expect to happen was finding a whole cyber community of other cancer patients/survivors/caregivers and genuinely wanting to keep up with them.  I never expected anyone outside my circle of family and friends to find, much less follow this blog.  That was kind of cool 🙂  I could just shift focus and blog about other things, but somehow now that I am done active treatment that just seems self-indulgent. At least on a blog that was specifically started to talk about breast cancer.  

So one final update.. I saw the oncologist yesterday and was given a clean bill of health. My tether has been lengthened to 6 months before my next check and the next time I have anything to report!

I’m going to continue to follow and comment on the blogs of the amazing folks I have met here in the blogosphere and who knows? I may decide I have something to blog about down the road but for now.. thanks for following along and all the support. 

Image

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.

I’m not even joking about the PTSD

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?

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.

A different 9/11 remembrance

While the rest of the country is reflecting on this day 11 years ago my thoughts have been on my sister. Today would have been her 52nd birthday had we not lost her two months ago.  As unreal as it seems that 11 years have gone by since we were brought to our knees by an act of cowardice by terrorists, it is equally unreal that yesterday marked the 2 month anniversary of when this family was brought to its knees.   I talk about Debbie in my blog of 7/21 when the shock was still fresh.   I had to recount to yet another medical provider the facts of her illness(es) and death yesterday.  I’m beginning to think my expectations of the medical community are unreasonable.  While I know they share information regarding my treatment between them, not one doctor has included the fact that my only sibling died unexpectedly in their reports.  Yet, they all want to be kept abreast of changes in family medical history.  Annoying is an understatement.

Today is exactly the kind of September day it was 11 years ago on Debbie’s 41st birthday when America changed forever. Bright sun, impossibly blue skies, cool air.  A perfect day for remembrance.  In a bit some of her family and friends will gather. We’ll visit the cemetery and then have dinner together and celebrate.  Not everyone can make it but those of us that can will raise a glass and remember.

A certain glow

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.

9 long months

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.

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.