Things will get better... right?

I distinctly remember a day in... maybe February?  I remember the moment, but not what day it was. I was sitting at work thinking about plans for the next few days. I remembered thinking how content and even HAPPY I was feeling.

It was just after I joined planet fitness with Sue, and that was going well. My back was slowly improving (hurt it right before Christmas, pain got so bad that i passed out in my hallway one night at 3 am. That was,,, not fun... and rather expensive... but I won’t go any further off on a tangent about that now)

My brother in law went through what I’ll call school, for a couple of years, to further his career. It was hard on my sister, lots of random times needing me to stay over and babysit when their shifts overlapped. But “we” are done. He did the hard work of course, but achieved the goal.

This was “supposed to be” a year we did x, y, z.

I won’t trivialize the losses of so many families  by complaining about what the actual plans were.

It’s just that this year wasn’t supposed to be fear and worry and sadness. And I guess that’s why that one sunny afternoon sticks out in my mind.

I fight to stay hopeful, despite all of the arguments and just general “bad” going on.

This morning I got up early and was driving to me sisters to help again and was praying/ contemplating things and feeing like I really needed an encouraging sign. I looked to my left and saw the most beautiful sunrise; you can see it in my Instagram feed if you care to. I’ll take it. It shouldn’t have been so bright and pretty given how cloudy today is, so there’s that.

these same four walls

tap, tap... is this thing on?

I have worked from home since Friday, March 13th. Fell down into despair but I feel like I'm better now.

I work for a tech company now, they're pretty cool, I won't say more because I would like to remain gainfully employed, especially now.

I have been relatively unscathed by  ::: waves hand around:::  THIS.  I have a friend who lost her son. A coworker who lost his grandpa.   But... knock on wood.

The terror was fierce at first, because I have family who works in a hospital, in ICU, treating people, with this beast.  I mean, we're in NY.  "upstate" ... but  we've had to deal with "dirty rooms" and kids crying themselves to sleep at night (is daddy going to die before my birthday, that will stop you in your tracks  for days)  and dark conversations about worst case scenarios

but... knock on wood... I'm ok so far... so the guilt about bitching kicks in, BUT

I am *TIRED *

tired of grocery store mild anxiety attacks (thank you dear sweet baby Jesus, in all sincerity, for Instacart and Hello Fresh, they truly have saved my mind)

tired of staring at the walls of my family room ( I hid in my other "living room" all day on Mother's day)

tired of hunching over my not quite ergonomic desk (fuck my shoulder and neck muscles are so tight)

tired of not being able to randomly go browse Michael's for some cheap acrylic paint and a flimsy wood "thing" that I can spend the evening painting

(but oh sweet Pete I have spent so much money on Amazon. I basically bought a BOARD the other day. Yes, a fucking board that I can tape watercolor paper to... and it  may or may not warp, depending on which review you believe but FUCK IT I AM GOING TO WATERCOLOR PAINT.) 

I miss my stand up desk at work 

I miss my friends at work

... and leaving work and going to Planet Fitness (yes I finally joined a gym and so that's probably the disturbance in the world order that caused this shit, I'm so sorry. I have a very eerie photo of the nearly empty gym the last day I went there, a whole row of empty cardio machines)

I miss our family dinners on Sunday when my sister's husband would cook us a feast and leave me a giant mess I would happily clean. 

I miss blasting my sirius radio in my car on the way to and from work and pretending I can sing You Say like Lauren Daigle....

tired of groundhog day, knowing that I have to stay home for a while more (my employer is not eager to jeopardize us by opening up too soon )  and get up and brush my teeth and join the zoom meeting to show my boss I'm functional today,

so I stay, in these same four walls

Day 2/365

It's nice to get a ride to work in a heavy snowstorm; to keep your karma intact you must then shovel the sidewalk when you are first at the office. Pay it forward and so on.

Heyohhhhhhh

I know there may be only one or two people out there who will read this...but happy new year!

New year, reasonably healthy, job going fairly well, all in all things are good... I miss some of my friends I don't get to see anymore though.

Hopefully this year I get even more back on track...

Is google reader even still working?

I started this post with a title of "You say goodbye, I say hello", but that doesn't seem to work.  Maybe it does. Who knows? Quite honestly I'm not sure anyone will read this post. But if someone does...

I am well. I feel *healthy* again, which if I could post in screaming neon red blinking letters, I would. I more or less won a spot on a fitness challenge team and won a 1 year membership to planet fitness, and it has been fun hitting the weight room again. I did it more than a dozen years ago and liked it, until an unrelated accident made me stop for a while. :::Cough::: fifteen years :::cough:::
People at work are starting to notice that I'm doing "something" and that feels so nice. While the voice in my head says I don't do enough cardio,  reality and my children's sports schedules intervene, and my college roommate assures me that she is The Slowest Loser but it is still progress. And so I am happier with myself than I have been in a while and there are even days I almost don't even think about ever having cancer.

Time marches on for my poor sweet father in law who is sad and lonely. It breaks my heart. He's lost without his girl. He has been sick with one thing or another a couple of times lately, and my kids and I flinch nervously, and then he gets better. It's hard. Hard to figure out how to fill his time, where he should stay or go...

My job may or may not be around for much longer. My company is reorganizing. I will stay until they gently put me to the door, but during the transition my department could end up growing and not vaporizing. One never knows. I know in my heart that if I need to get another job it will fall in place in time. It always does. In the fall almost four years ago, I interviewed for a wonderful job that I would have been fabulous at... Until I got cancer. So I was secretly happy in the end, when I figured out that the job was never meant to be, because  I was destined to be a crazy little contractor because it would allow me to focus on just making it through my treatments and healing. And caring for my in-laws. And running away to Pittsburgh every now and then to kiss sweet baby faces.

Three things, which make me happy: those babies. My gardens. And photographing (those babies and my gardens in particular, but also my own kids who are growing up so quickly I can't even discuss it.)

The Emptiness

I was raised Lutheran, but stopped going to church as a result of some events that took place while I was in high school. Nothing sinister...didn't really involve me, but my parents stopped attending, and so did I. That was one of the unhappier times in my life, as I struggled with relationships all through college, and felt very much alone and confused at times.


When I met my husband one of the things I liked about him was that he attended church regularly. His mother was thrilled that I agreed to be married in the Catholic Church (actually, a pretty little chapel at his college.)


I wasn't ready to convert for a couple of years, but eventually an old Irish priest of the parish won me over. My mother in law was my sponsor. I have picture of myself from that day, standing with her. This was back In The Old Days of film, so when the picture was snapped I had a strange little smile, but we only took the one photo. You know how it is, with pictures of yourself...but I still have it.


I sang at her funeral. There is an arrangement of Hail Mary, Gentle Woman that I have always loved, and it meant quite a lot to me, to sing for her. My nephew joined me, along with a few members of the choir who joined in for the Gentle Woman part of the piece.


Last night I sang with Stanley and the rest of the choir at the Holy Thursday mass. After this mass, we will not sing a Gloria again until the Easter Vigil on Saturday night. I was so proud to see my son lead the altar servers, carrying the heaviest ornate cross that is only used on special occasions.

At the end of mass, the priest carries the Eucharist from the main tabernacle to a side altar of repose; for this occasion the side altar area is decorated with flowers and the tabernacle is covered by a beautiful canopy depicting Jesus risen again.


After mass, the main altar and the other side altar are stripped bare. My husband and my son help with that work. I came down from the choir loft and sat near the right side altar, waiting for them. I knelt in the pew and wished that I had learned from her the specific prayers that she might say if she were beside me. It saddens me that the old traditions are being lost and forgotten. We sing pieces that many Catholic churches don't do anymore. Old chant masses and Latin pieces... The music is sometimes crumbling in my fingers...yet those are my favorite ones to sing.


I looked around the church. It's a beautiful old European style, in the shape of a cross, with gorgeous stained windows and beautiful statues. It was growing silent, as most other parishioners left to go home. It was nearly completely dark. The windows were black in the absence of any daylight. The main altar was empty, and the tabernacle door open.


I was filled with a hollow sadness. I don't cry often when I think of Lucille, because she is now at peace, no longer weak and in pain, and we never had to put her in a nursing home, so I'm grateful for that. But this will be our first Easter without Nana.


My son came to me, and asked if I was going up to the altar. I took that to mean that he wanted me to go with him, so I said yes. There were flower pots holding varieties of spring bulbs that were arranged around the altar. As I knelt there, my tears flowed a bit more, and when I was about to stand, I noticed something.


Right next to me, there was one small pot of miniature daffodils, just like the ones that bloomed on my kitchen counter at the moment my mother in law died. They were in full bloom.


I believe that this is not just coincidence ... And that she is telling me she is alright, just as I had asked her to do shortly before she passed..


We can choose to see signs of hope all around us, or we can let the emptiness take over and weigh us down.

Me again

I have made giant steps in the last week or two toward becoming ME again and not That Girl with Cancer.

While I was enduring the MRI / biopsy endlessness I recently blogged, I also was coping/ denying reality by applying for a challenge program run by the American Heart Association, with fingers crossed.

My husband first told me about the program, and then my wonderful friend who went to my imaging appointments convinced me to go for it, and she helped me figure out how to answer the "why are you applying" section of the documentation.

It boils down to being passive /cooperative during cancer treatments, and NOW, taking back control of my life and health.

The day after I FINALLY got my biopsy results, I got a call that I had been selected, along with ten other women.

I went to a kickoff meeting this week, and definitely felt like I've made a couple of new friends. We shared our reasons for applying and laughed and cried and took "before" pictures together.

The other BC survivor came right over to hug me, and I think she's a sweetheart. She had talked about not knowing if you even HAVE a future, and how nice it is to have to figure out what to do with yourself now, with that future stretching out ahead of you.

One of the other women reminded us that there were many other people who applied and would love to be in our shoes, and we should be taking full advantage of everything available to us.

In addition to nutrition coaching and sessions with a personal trainer over the next ten weeks, I also won a year of membership at a local Planet Fitness gym.

Today I gathered up my courage, called ahead, and went to work out. It was hard to walk in alone and with almost zero self confidence, but the manager was there and she congratulated me, showed me around, and then left me to work out.

Years ago I went to a gym regularly, then quit when I nearly broke my ankle in a freak accident volunteering at a fundraiser. I had two kids under age four, and just lost my gym mojo after that.

But I do enjoy the gym environment, and I liked the way PF has a 30 minute circuit set up, and what seemed like an endless row of various cardio machines.

I walked and jogged a bit on a treadmill, and then did a quick set on everything in the circuit. Somewhere along the way as the sweat ran down my face I remembered what a challenger from last year said to this year's group: "I've never been happier."

It definitely rang true for me. For the entire time I worked out I wasn't the sick girl anymore, just me again.

I went to buy new sneakers to celebrate; my sneakers were new in 2006 when I ran my first 5k. The clerks at Fleet Feet had a gentle laugh at my "vintage " Mizuno sneakers (it was a "they don't even make this model anymore..." type of schtick)

For now... I'm exhausted. Goodnight!

Some Bruising May Occur

(Note... Two things... One, this is very long because it covers about three weeks, so I'm sorry about that, and two, because my daughter is probably reading this, I really do NOT have cancer again. Promise. This is just about how you have to beat the dragon down once in a while. )


Right now there are more than 2.9 million breast cancer survivors in the United States. I'm sure they all go through something like this sooner or later...

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After I was "done" with two rounds of surgery, chemo, and radiation, I was really only starting what sometimes feels like a never ending round of follow up visits.

I alternate between images, surgeon, and (chemo) oncologist. My radiation oncologist told me I could call him if I needed anything, but he didn't want to drag me in to see him too every six months. Now mind you, I still have pesky things like TEETH and flu shots to take care of. So every month I'm handing my insurance card to SOMEONE.

Six months ago after a mammogram, the doctor who reviewed the images spoke to me before I even left the appointment me to discuss some "findings" along one scar, saying they were probably calcification. As far as I could understand it, this just meant some hardened cells along the incision; the doctor's opinion was that they're most likely benign cells that aren't a recurrence of the tumor.

Of course, the gap between hearing and understanding was about two weeks, and asking my surgeon and her intern to explain it to me again. The recommendation at the time was "we'll watch it and do an MRI in six months." The "me" portion of "We" has been nervously looking at that scar for six months, probing it with my fingertips every now and then, thinking "And...?" Oh, I've been watching it. Mm hmm.

My chemo oncologist warned me, "sooner or later they will find something they want to biopsy. Don't get too upset. You're going to have 40 years of checkups. They're doing their job." So I liked the promise a bit more than the warning, but I remembered both.

The MRI took some five or six phone calls to schedule, mainly because I was trying to get it scheduled before I had the surgeon's script ordering the test, so that I could get it on the calendar of my friend who accompanies me to all of my imaging appointments.

----------------------------

Having an MRI is a rather drawn out affair. You have to affirm who you are, over and over, and promise that there are no rogue bits of metal in your body for the machinery to rip out, and pinkie swear that you're not allergic to the dye. Then you offer up an arm for the IV. (Ugh... One of my very least favorite things in the world; my left elbow feels like Swiss cheese some days.)

Then you lie face down on what SHOULD be the headrest of a massage table BUT - The Joke's OnYou, you're going to slide backwards into a big tube, wearing earplugs to confine you further, with your hands pinned awkwardly under your body. This is so they don't fall off the table, but your fingers unfortunately DO fall asleep eventually. Breathe. Don't panic.

You might sing songs to yourself - only in your head of course, because you can't HEAR, or move much, or cough, or anything like that. You may walk through the words of national anthem, and then try to think of everyone famous that you've ever seen perform that song. And then you think your way through another song, and another, trying to stay very calm so you can please just get this IV out and go home.

(I'm not sure why "I" became "You", but I'm sure a psychologist would just nod at me.)

----------------------------

I couldn't get any results immediately from the MRI, but I think in the back of my mind I knew they wouldn't call to say say "oh hai, it's all cool, see you in six months."

So it was only a dull ache when my phone rang, and I listened to someone tell me they wanted me to come in for an ultrasound to take a closer look at that scar to see if there was anything to biopsy. I made the appointment huddled covertly in an empty office, because I work in a trendy modern workspace which is more or less a giant conference table, and so I slip away when I get phone calls.

What sucked, and what made me cry just a few tears when I hung up, was that I was right about to go see my sister for a long weekend of kissing my cute baby nieces. It was something we planned just after my mother in law passed, and I had the plane tickets already, and I thought to myself, "I can't get a break. One weekend of just having fun and relaxing." This is why we can't have nice things, kids.

I went in to see my boss and said "um, that MRI didn't go so well." I was suddenly tearful, and weary. I don't want to do this again, I said to her.... Telling people, and making appointments for tests and procedures and explaining to my boss that yes I will be out AGAIN and oh hey don't forget the vacation I put in for last month...

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So.... I went on my trip. I'm so glad I did. It would have been silly to waste the ticket, and I NEEDED to kiss those baby faces and eat cheesecake.

On the flight home I cried again, just for a few minutes, knowing that I had a lousy week ahead of me, and also knowing that my niece was running through her house calling my name, wanting to snuggle and watch her Monkey Show and eat my yummy Mac and Cheese with me, and not knowing when I can go to see her again. I wondered if the people around me thought I was afraid to fly, or if anyone even noticed my sniffles.

My second flight got delayed, and I didn't sleep well, and the next day spent a whopping two hours at work trying not to be sick, and then went home and slept for two hours and actually made it through the day. (so I was useless Wednesday after the phone call, out Thursday, Friday and Monday, and worked TWO hours Tuesday. I think I'm on track for employee of the month.)

--------------------------------

Tuesday's round of adventures started with an ultrasound. My friend was by my side in the waiting room, making me laugh through my tears. Partially because one staffer thought we were married...hey, it is NY State (yo, my wife is a beautiful black woman... sweet!)

The objective of the ultrasound was to try to locate the rogue cells and do another core needle biopsy. Oh, those are fun. I missed that staplegun sound, so close to my face. Not.

Unfortunately they couldn't see anything to try to biopsy. This is where I have to somehow understand why that's a BAD thing, and why we have to hunt down things that couldn't be seen in the ultrasound and hadn't changed since the last mammogram. But there's that whole I DON'T HAVE A MEDICAL DEGREE thing slapping me in the metaphorical face again.

The next person on staff that I spoke to was able to get me in for the MRI guided biopsy the Very. Next. Morning. Oh happy me. Now Wednesday was shot.

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Not only was I dreading going back in the tube, I was trying to understand how they would actually biopsy me during an MRI.

Well, let me tell you, it's kind of cool -- because technology is amazing. Unless it's you ...and then it is wretched. Lie on your stomach/ ribcage on a lumpy table. (Even getting into position is hard when you have another IV, and you are trying to get your "side" to fall properly into the magic opening in the table where they will use square plates to compress it while you lie there, head forced to one side so that you are forced to spend your time staring at the IV inside your elbow. Joy. )

And if you caught the word "compress" ... Oh yes. A 40 minute semi-mammogram. (And the female techs tried over and over to get the plates right but finally had to ask me if the guys could come in to assist. Extra compression because the spot is high and to the side? of course. Modesty-ectomy, no charge.)

The plates have a grid, and that allows the doctor to place what we will vaguely refer to as a "tool" (you're welcome). I never did really figure out whether the doctor performing the biopsy was somehow UNDER the table or alongside. I'm not really sure I want to think about it much. (Don't google it until after you're done with the procedure. The tool is way scary looking. I'd rather gaze at my IV. )

All during the procedure two really sweet technicians held my hands and wiped away my tears and rubbed my back (... they also were in position to hold me down should I try to move...?)

The irony is that the lidocaine, which numbs tissues, hurts most of all. It BURNS going in. For most of the procedure I wasn't in actual pain, just uncomfortable. It did take a long time, so long that my shoulder cramped, and I was dizzy when I sat up, from barely breathing (resting on my rib cage and trying to keep still) and had to drink juice while I was thinking "if I EVEN pass out in this room..."

And even THEN you're not done. Nope! Another mammogram, to verify the placement of a tiny "clip" or titanium seed marking the biopsy site.

The doctor told me that she thinks it is probably fat necrosis, which sounds bad, but google tells me that it's fairly common after injury/ surgery and doesn't mean the cancer is back at all, but we have to wait for the biopsy results which will tell us for sure.

When all was said and done, I got some steri strips, a tiny pink ice pack. I also got written reminders to watch for signs of infection....and that some bruising may occur.

My bruise is now (a week later) red, purple, blue, yellow and green. And giant. But knock on wood, no infection.

Unfortunately as of this morning I also had no official biopsy results yet. After a week... One that my coworkers have enjoyed very much, no doubt. I have called offices and ASKED for the results, but all the nice woman on the phone could tell me is that they're back, but the dr is doing surgery yada yada someone will call me back. Then I got a computerized answering service and I dutifully recorded my name, birthdate, test results I'm asking for, and the number I would PLEASE like them to call back.

Roller coaster, anyone?

Finally this morning I thought to call a person in Dr C's office whose extension I still had in my phone. I left a voicemail before 8 am, pleading. Please see if you can get SOMEONE to call me back with my results.

All of a sudden, there was the doctor on my phone. "No cancer. It's scarring." I verbally hugged him over the phone, and felt 100 pounds lighter.

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Right now there are more than 2.9 million breast cancer survivors in the United States.

Fortnight

It's only been two weeks since my mother in law died. A whirlwind of sudden activity after two weeks of excruciating limbo (aka "hospice"). I'm still surprised when I'm in a conversation with a friend and suddenly the wave crashes over me and I'm in tears.

I feel like I led a very sheltered life when I was young. Didn't have a big family; stayed home a great deal of the time because my father worked nights for a quarter century, and the necessary sleeping also precluded socializing at home. And I was more or less clueless about some life experiences, because I spent the vast majority of my free time sitting on my couch being quiet.

Every now and then something happens to me and I metaphorically kick myself for not realizing what other people go through. It happened when I had cancer. It was abstract for me, until I walked in for my first round of chemo. I was suddenly mortified to be fairly cheerful (to give myself a break, maybe optimistic is a better word, since my prognosis was good) and young-ish and somewhat strong compared to some of the frail older people I saw there. By my second round I was looking around the room thinking guilty thoughts like "wait... That kicked my ass... How do these older people get through this ?" (keep in mind I don't mean that in any offensive way...I swear... It was an instinctive protectiveness. Can't I do this for them? They shouldn't have to do this.) Then my third round I had the allergic reaction in mid- dose, and all eyes were on me. Beyond horrible. I aged mentally so much that year. I felt "young" until all of the surgeries and complications and treatments...and humbled to know that some people slog through this for months and years.

I went by a cemetery the other day- one I drive by all the time. I'm sure I even have pictures of it on Instagram, because the sun was hitting a certain way, or the leaves or the snow or something detoured me temporarily on my way to work.

But this time, I had this sudden rush or melancholy as I briefly took in HOW MANY STONES THERE ARE. And every one was someone who died and was mourned by a gathering of people who were crushed that they will never see that person again.

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In an interesting twist, my two year old niece has recently picked up a habit of pointing at a picture of my mother in law and saying "angel". The only time that word has been presented to her is in relation to a lighted Christmas figurine. So where did this come from? You tell me. My mother in law used to love seeing pictures of her on my iPhone. Is she checking up on her? I hope so.






.

Daffodil

Three months? I'm sorry. I just couldn't. I have been busy caring for my mother and father in law.

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(I am doing well for the most part, as far as my oncologist sees it. He has recently promised me some 40 years of regular checkups yet to come. I had to laugh later because, well, GOING ON 40! )


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Before I go into a long post, let me tell you that chrisstewart69.blogspot.com is a blog that you should be reading. I read it every morning. It makes me a better parent, who appreciates life and (my) children SO much more. The very first post has a link to a news story that will give you background.

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My sweet mother in law left this life on Friday. This past year has been a long path of trying to juggle life in general (with jobs and responsibilities and teen athletes) and elder care.

My mother in law had been in the hospital twice since Christmas, and came home "on hospice", which for us was peculiar because she didn't have a cancer diagnosis, but was so weakened by an infection in her arm that her doctor thought she would not rebound. Sadly he was right.

She was able to talk with us for a few days, and take antibiotics with tiny bites of yogurt or mashed fruit. She looked at me once and said "your hair grew back so nice". It cracked my heart into a thousand pieces. Considering my chemo was almost three years ago, it was a tiny small consolation to be sure she knew it was me there stroking her own hair away from her face.

Eventually she couldn't eat, and could only take sips of water from a spoon. But this was what she wanted. She was at home resting comfortably in her own bed. No hospitals or machines or drugs or tubes. And yet my feisty Irish girl was still there. I dribbled water all down her chin and she said "well I wanted a shower today anyway." She blessed me with laughter in her last words to me.

As she faded, we visited and held her hand and talked to her and kissed her face. She was like a music box, slowly winding down. My brother in law and nephew went to Washington DC to participate in a band festival and I whispered in her ear "a few more days.... They're not home yet." She stayed with us.

The brothers spent as much time as possible there, anxious. Then the day came that her husband said he'd like to be alone with her. No commotion, no visitors please.

That was last Friday. I busied myself with grocery shopping. I picked up a miniature daffodil plant from the small floral section in the grocery store. Set it down, picked up another, couldn't decide. Finally, after handling a few, I put one in my cart. I figured it would bloom in a week or two. No buds were to be found.

Exhausted after a long week, I dozed off in front of the tv, and stood at 9:30 to go to bed. As I was walking by the kitchen sink I noticed one full yellow daffodil bloom. I was surprised, and put a picture on Facebook. (Maybe Instagram too... Tap, tap.) There were no buds in the store. Really. I was afraid to verbalize what else was running through my mind when I saw that flower.

I continued on to my room after that and was just putting my head on the pillow when the phone rang. Then I knew. It was 9:40.

"Your mother died ten minutes ago". (The aide has always complimented me that I care for her as if she were my own mother. With 25 years of receiving nothing but kind words how could I not?)

So while she was leaving this life, a flower opened out of nowhere on a tiny potted plant. It gives me hope, in a way. Hope that SHE made it bloom and that it was a message that everything really will be alright and that she is okay and there really IS...



*********************


After not eating for a week, she was frail and thin and delicate. When I walked into the funeral home and saw her I sobbed. She looked like herself again. Beautiful.

In the middle of the funeral my nephew and I went up to the choir loft, where Stanley and Bette were waiting.... we sang the first part of Hail Mary (Gentle Woman), and they joined in.

My children were pallbearers, along with my nephew. They are between childhood and adulthood, being 18 and 15. They were so brave and yet I could see how much it hurt. We all knew it would happen and yet... You're never really ready.

It was so heart crushing at the end of her funeral to see my father in law shuffle down the aisle in his walker, behind her lavender casket. I sobbed when I saw her coffin poised just inside the light of the open church doors.

Then we went to stand at the cemetery and my heart ached again, to see my children and their cousin, in dark wool coats with white roses on their lapels, white gloves, and holding white long stem roses, standing solemnly on the other side of the coffin, facing us "adults".

Then they took their gloves off, laid them on the lavender, casket, and laid their white long stem roses on top. The bittersweet pride...

4040

Right now this is picture number 4040 on my phone, which reminded me that I have a blog. Oops.

I had a very nice experience last night being interviewed by a local news anchor for an October / breast cancer awareness piece.

I felt like I was able to get across my experience with early detection and the treatment options it offered me. The interview was also about my fondness for Dancing With the Stars and other coping mechanisms I used.

Fun... I'm not sure I want to see myself on a wide screen in high def, but we can roll with that.

October again (rerun)

This is a post I wrote a year ago, but it's still very much true:

http://goingon40.blogspot.com/2011/10/october-again.html

It explains why I don't wear a pink ribbon every day in October.

In other cancer-licious news, I have been offered a chance to participate in a pilot exercise class aimed at veterans of breast cancer.  It will be free for me, as it is a brand new class that they are creating, and want people to give feedback. I'm excited because I need to really get back to a healthy fitness routine. Once upon a time I was a little bit fitter, and even belonged to a gym and did the weights, treadmills, spinning, all of that good stuff.  LETS JUST SAY, it was over ten years ago and I want that ME back.

I have a treadmill and a universal sort of workout bench, so I am hoping the trainer leading the class will help me formulate a plan. That's what I need, a man with a plan (or a strong female coach with a plan.... not picky here! )

Here's the description...

a 6-week bone building, muscle strengthening, body toning, and metabolic boosting strength session.  This 6-week session is designed for beginners looking to take advantage of the research-based benefits of resistance training.  These benefits include reversing the changes (loss of lean muscle mass, decreased strength, and increases in fat mass) seen in people diagnosed with breast cancer as well as those going through hormonal changes and chemotherapy.   

Wish me luck!!

Bump In the Night

... these are the things that scare me...

Whenever a checkup approaches, I begin to sense a murky shadow become more and more defined, just behind my right shoulder. That's cancer, sneaking up behind me, waiting to tap me on the shoulder again. It's right. There.

On bad days, I feel like it's not a matter of IF the cancer will come back but WHEN it will, even though my oncologist, He Whom I Adored, assured me that once he was done treating me I wouldn't have breast cancer.  (Then why do I still need to have mammograms? So confusing.  Oh, I can get MORE. Awesome.)

On good days I think  "Oh hell no! I kicked cancer's ass! I need to live like I'm going to live forever (or at least till I'm 93 like my great aunt and her siblings did)  because I GOT ANOTHER CHANCE TO."  Those are the days I stop and take pictures of flowers and little things that I see that just make me happy. My Instagram feed (Carlyq80, naturally...)   is full of happy and bravado.

I went for my scheduled mammogram a couple of weeks ago, with a dear longtime friend who volunteered to bring me to chemo and was genuinely upset when I didn't take her up on it. Fine, I said, will you go with me from now on when I get images?  Absolutely, was the reply. And she hugs me every time we meet, and helps me walk in the building when I just want to run back to my car and drive, and drive, and drive.  And she waits in the waiting room for me, typing away on her laptop, while I go and stand before the machine, shaking, knowing that I will whimper in pain all through those "extra compression on the scars" images I dread so much.


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My mother in law is declining progressively. She appears to have Parkinson's. (I've believed so for years, but she has adamantly refused to even HINT at any symptoms to the only doctor she will allow to examine her. He takes her blood pressure, mumbles a little something about the aortic aneurysm we repaired a couple of years back, and goes away, not even realizing how useless he is to us. )   She has good days where she can walk almost unassisted, and bad days where she slumps to the side and forward and twitches so hard she almost falls out of bed, and is too weak to eat or even swallow but a few sips of water. And she sleeps.

I look at her and feel love for her, for the 24 years I have known her, and I feel pain for what she is going through, as the last shreds of her dignity are slowly stripped away. I sometimes go to a dark self absorbed place where I wonder how long it will be until the diapers and wheelchairs and hospital bed will be for me. Years? Decades? I tell my kids to someday put me in a kayak and let me paddle toward a waterfall, and they manage not to realize I'm serious.

I know that some of the gloom I feel is from Tamoxifen, and every now and then I can't take it...literally, I can't take the medicine.  I look at the pill and put it back in the bottle. I will take it tomorrow. And I feel the difference, and it gives me hope, even though I know I don't dare pull that stunt again for another month or two. The day is brighter, and I am more content and optimistic.


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The doctor called me into a small room, and I got dizzy. I tried to breathe and listen and understand.  She read my films, and she sees what are probably calcification spots, but until they're larger sometimes it's hard to tell, but there's nothing big enough to biopsy, and I should follow up with my surgeon and probably have an MRI in six months.

I remember how quickly things happened the last time, and I said to myself "This is different. It's not the same." But another voice was saying "I KNEW IT. HERE WE FUCKING GO AGAIN."

I walked out to my friend, and she looked at my face waiting for the smile and thumbs up, and all I could muster was to move my hand in a "Eh, so-so " motion before I started to cry.  I sat down next to her and she put her face right in front of mine, inches away.  "YOU'RE FINE. BREATHE. YOU'RE FINE. You've come through so much, you're going to be fine."  And I cried.


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The aide who cares for my inlaws every night seems to have a knack for calling with her daily updates just when I have managed to find a moment of tranquility. She is our guardian angel and my biggest nightmare all rolled into one. She cooks for us, she washes their bodies and tries to help them cope with their steady loss of any independence at all, she cleans their house and keeps us from having to see certain things that would break our hearts. She is a drama queen and a martyr and we couldn't do this without her.  Mom is really bad today and she can barely walk and I had to hold the cup up to her lips.  But I can handle it.  Well what the fuck is it then? She's really bad, or you can handle it?

My frustration bubbled over with one son the night before my visit with my surgeon. We screamed at one another, disagreeing about whether she is well enough to go to get the eye exam she has been demanding for weeks.  I quit.   "YOU take the daily calls" I shout, before I slam down the phone.  My husband brought up nursing homes and muttered some frustrated remark about "until they're dead" and I fled the house. The wind danced all round me as I walked around the pond, comforting me. The darkness closed in around me, and I walked, and walked.


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The smell of the hand sanitizer slaps me in the face every time I walk in to the my surgeon's exam room. It brings it all back. The surgeries that left me unable to use both arms for days, the wound that reopened and got infected and stayed open for ten days of misery and excruciating packing and re-bandaging. The tiny yellow tube/ hose that was put in when they took more margins and repaired the other damage. I was so happy to see that go.

The med student is so young, and so very cute and earnest. I was probably out drinking one night in college when he was born. He looks right at me with his big gray eyes, and tries to explain to me that these results are not bad. Not at all. He does a better job explaining that certain words like "probably benign" mean this and that, and they wouldn't use those words if there was any reason for concern, and when you look at the  scores and grades and.... (he starts to lose me there.... but he was pretty damn cute...)

It helps. I start to unclench my fingers. My surgeon comes in and restates everything he just said, and her decades of experience doing exactly this type of thing over and over carry me back to a limping optimism and growing relief. The shadows recede again for a while. I text my friends and let them snoopy dance and cheer for me.

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While I was in cape cod, on our last night we went out to an Italian restaurant a bit farther away from the house we use. When we were walking out of the restaurant, the sun was starting to set. I begged Mr C to hurry back. I had my good camera with me, and I wanted to photograph the sunset on the beach 200 steps from our house.

He dropped me off at a point where I could get to the beach in less than a minute. He and the kids went back to the house to play pranks on one another and eventually join me on the beach.  But while I was there alone, it was magical.  The wind was alive around me, and I could feel the endless energy of the earth and the sea. The water stretched out like the future I hope to have, one wave right after another and another. I shot and shot and shot so that when the fear comes back, I will have these photos to look at to remind me how I felt when I wasn't afraid.

Out of office message

Hi, this is Carly. I'm sorry I haven't posted a decent blog entry in (weeks?). .. Please leave a message.

I have been spending time on my garden and the Olympics and Instagram, when I'm not at work or helping care for my inlaws. Very discouraging. So my flowers make me feel better. This year my garden is looking great. So I'm sorry if you follow me on instagram and don't like flowers. :)

Summer's almost over, so I will go to the ocean soon. (Hopefully, no hurricane chaser this year.) Then my baby girl will be a high school senior :::thud:::

Knickerbocker 200th anniversary parade - Waterford

Knickerbocker 200th anniversary parade - Waterford, a set on Flickr.

Today I abandoned a long scribbled list of things I was going to do around the house, grabbed my camera, and shot about 250 photos of firetrucks. And firemen. And Ladies Auxiliary members. And a few dozen very overheated kids in marching bands.

The fire company hosting the parade has been in existence for 200 years. It was a nice parade, but the blazing sunshine was killing me. I was trying to hide under someone's little popup halftent and dodge two idiot guys who kept getting COMPLETELY in my way. I'd move up or down the street a little way (I was right near the reviewing stand, and everyone saluted as they approached, so that was cool). Every time I moved, eventually they moved again and were RIGHT. In. Front. Of. MEEEEE. Grrr. Stupid boys.

At any rate, I put about 45 photos up on Flickr so please click on the linked images and take a look - there are a few very old firetrucks that are lovingly cared for and taken out for occasions like today. Gorgeous.

Sundowning

Sundowning is a term that describes the way geriatric patients decline in the evenings. Weakness, confusion... In the morning my father in law is sharp and witty. In the evening he will look around the house where he has lived some 50 years and sadly say, "I used to have a house that was like this."

The sofa where I sat when I first met then some 23 years ago has been replaced by two chairs that gently lift one, two frail people up, up, up to standing, so they can shuffle to the kitchen to be coaxed to eat, before they return to sit by these windows and nap until the aides insist, "it's time to get up and walk. You need to walk, or you'll get weaker."

Some aides insist, and some just can't be bothered. They would rather read, or slip into a nap themselves, and put their hand out on Friday for a paycheck they don't really deserve.

It is a rocky path and a delicate tightrope. Trying to convey information among siblings without seeming to be too accusatory or demanding or unwilling to help... Trying to placate some of the persistent requests that come from boredom, confusion, frustration at loss of independence... from parents who don't understand we all work full time and have kids and their schedules... It's disheartening.

I don't know why the Hallmark channel moved and you can't watch little house on the prairie anymore. But to fix that I have to find a bill, and slip away from my desk tomorrow, and convince someone on an 800 number to give me information and maybe even arrange for a person to come and give you more than shitty basic cable, and yes I will disable the alarm system so we can save THAT money every month since you always have aides with you...

At the end of the day, we sundown a little bit too. We don't want the one additional call from an aide about some item that needs to be purchased, or to think about what happens next in this downward spiral, and what fights will happen when it comes time to sell the house.

I'm the lucky one

My dear Stanley, the organist at my church, had a very good day last Monday.  He bought a scratch off Lottery ticket, and he won a little sum of money, so when he was in another store he used his winnings and bought a more expensive scratch off ticket. And saw those magic words:  LIFE   LIFE  LIFE.  He won a ridiculous amount of money.

When I first heard through a text message yesterday morning, I must admit I cried big, selfish tears.  I don't care about the money. All I want is for him to keep playing up there in the loft, because there is something magical up there for me when he is on that organ bench.  I don't want the money to take him away from us.

Then yesterday afternoon, while I was working at our Steamboat festival on the canal, he walked up to me, with a giant grin. Honestly.  EAR TO EAR.  I just couldn't help but beam back at him.  "Are your ears burning today?" I asked him, laughing while a spoke.  I watched the "does she know" flicker across his face, and his eyes narrowed slightly as he asked me "Why?"  My smirk and "Everyone's talking about you" was my reply.  He told me the story and said that he will be on tv in a few days (which I know he hates... he doesn't even like to turn around when the priest has the congregation applaud for us at the end of every season. Stanley has a sign in the choir loft  - Soli Deo Gloria - to God alone the Glory - and it fits him to a T.)  He won't be a splashy, drive a convertible around town, sort of guy. The money will be used to help his nieces and nephews raise their children. 

I finally plucked up the nerve to say, "You're not going to quit, are you? I'll miss you... it won't be the same without you."  He shrugged that off very matter of factly - oh no, I'll keep playing.  I wanted to jump up on the folding table and dance.

The funniest moment came then, when I asked if he wanted a burger or hot dog, and he said "I don't know if I have any money with me."    I love him.




(I really don't want his money.  if you see only "lottery" in this story, you cynical chap, just go through some of these:



http://goingon40.blogspot.com/2009/08/it-is-hope-that-moves-us-forward.html  (the essence of my relationship with him)

http://goingon40.blogspot.com/2005/07/stars-and-stripes-forever.html  (a classic Stanley moment)

http://goingon40.blogspot.com/2012/04/hi-and-stuff.html (silly)

http://goingon40.blogspot.com/2009/01/clicked.html (  Stanley's shoes part 2)

http://goingon40.blogspot.com/2009/01/unclicked.html  (  Stanley's shoes part 1)

http://goingon40.blogspot.com/2011/08/remembering.html (this links to a video where he was interviewed about a friend of ours who was killed)

http://goingon40.blogspot.com/2011/04/so.html

http://goingon40.blogspot.com/2010/10/sunday-art.html

http://goingon40.blogspot.com/2010/07/sunday-art-traditions.html

http://goingon40.blogspot.com/2011/04/blue.html

http://goingon40.blogspot.com/2007/04/cant-quit-my-day-job-just-yet.html (oops)

Things of Random-ness

1. My sister was here for a few days. Nothing else really mattered to me. You can see the cutest nieces ever, in my instagram feed. (Or if you are my Facebook friend, but for some strange reasons most of my FB people don't know this blog exists. )

2. We had lobster. And yes I am afraid of those effers when they thrash their tails before you DROP THEM IN BOILING WATER. TAKE THAT. Except after the first one I did, I made my sister throw them in. We also made some really great cake magic together. It was her 40th birthday (so yes I am almost 47, and I really need to change this blog title...)

3. My fridge died today. Because it knows I bought a new dishwasher last week and maybe spent too much and I had fun with all that on the twitter with poly (and her brother, right?)

4. I have recently found something really good to bond with my own brother about. He is great at analyzing a book... We both read the Hunger Games and I found a book called the Girl Who Was On Fire (essays about HG) which we have been discussing.

5. If you are on Instagram look me up.(Carlyq80) but for pete's sake if you use the blur, do it right. It should usually be a band all of the way across your photo, horizontally, because a REAL lens would be focused at a certain distance from the camera... stuff closer or farther away might blur based on the aperture setting. Learn photography basics, people.

Carly Aka Char shared an Instagram photo with you

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Carly Aka Char just shared an Instagram photo with you:

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"I always feel like somebody's watching me... (my friend's daughter xo)"

Thanks,
The Instagram Team

It's summer

Drink it up... The late afternoon thunder, the days which all too quickly grow shorter.

I gardened all day, (this little fellow hitchhiked home with me from the garden store...) and now I am making dinner while I drink a glass of wine in my shorts and a polo shirt. Bliss!!

I am taking care of my friend's dad's garden while he's in the hospital. It's a beautiful, serene setting tucked away behind his house on a busy street. It's been 90 degrees all week, so I have made it my mission to keep everything from wilting. This means half an hour of wrestling with a super-long hose at least once every day, but I don't care. Each time, I notice something new while I water. (Ooh, I want one of those. And some of that. I wonder what it's called...) I want him to get well soon and teach me about his flowers, and to design an entire garden for me.