Living Now

I'm working with KU Med on this latest mortality awareness trip I'm taking, and, thus far, the people there have been wonderful. 

Even though I've been down this road before, I wouldn't know how to begin to coordinate the care I need, especially given the admittedly scattered state of my brain. I have been grateful to find out I don't need to know. From the time the biopsy results came back as positive and I was assigned Jessica as my nurse navigator, I've been caught in the net of the hospital referral system. They know who I need to talk to, and the right people have been calling to get appointments onto my calendar. (Or, in a couple of cases, where the appointments are harder to snag, they just put them on there unilaterally, letting me know I could cancel or move them if need be.) 

So far, I've seen a breast surgeon and a medical oncologist - the meetings were far more informative and productive than I could have imagined they'd be, given that we don't yet know the scope of what I'm facing. Next week is the radiation oncologist, then the scans which will tell me where the boundaries of my treatment will lie. (I should have a better view of the lay of the land early the following week.) Still waiting to hear from the plastic surgery team - I know they have a role in this somewhere.

So far, my insurance has not balked at any of the tests or appointments - and given the nightmare stories I've read, this is no small blessing.

Word of my returned illness has begun to spread without my help, for which I am grateful. I do want people to know - I need their help and support - but it's so hard to watch their faces when I share the news. No one wants this for me.

I've mostly stuck to my guns, and have not let the news-to-come ruin the days-I-have. 

I do have to laugh at some of my nesting choices. That quilt, whose parts have been in my closet for at least two years already? NOW it needs to be assembled?? !! 

That's OK. There are worse ways to spend my time - when my hands are busy embroidering the daisies I've chosen to hold the front to the batting and quilt back, my brain relaxes. When I focus on the task at hand, I let go of my concerns.  When I put it that way, perhaps I should give my gut a little more credit, eh?

One step at a time, this, too, shall pass.

Cancer Sucks. Still. Again.

Sometimes, it's hard for me to write the words I know I need to say. So, I'll just blurt it out.

My cancer is back.

I had three good weeks in there. When I visited Kate in February, I was heartened to see her responding well to her hormone regimen. She is still sleeping a lot but has color in her face, her energy is returning.

I returned home with a lighter step, and for a whole week began to look to the future; to think about things I want to do; start planning what comes next.

Then, I found my own lump. *sigh*

I went in for a biopsy the following week, and as I was pretty sure they would, the results came back as cancerous - a tumor analogous to the one I had removed 13 years ago. Now, I'm in the midst of tests and appointments - all the things that need to be done to determine what I'm facing. How far has the cancer spread, is it treatable? I won't have answers for these questions for a few more weeks. 

I am scared. No two ways about it.

But. 

I have a choice. The answers are going to be what they're going to be - I can't change them. I'm not in denial about the tough road ahead. But I can choose to not let the sword dangling over my head ruin the next three weeks. 

It is spring in these parts. The crocuses are popping up, the trees are blooming, the air is soft and welcoming (when the wind isn't trying to blow us off the map).

I can choose to be. here. now.

Like the birds, I am in nesting mode. Tidying up my space, finishing up a project or two, meeting up with friends. I have been tuning my ears to listen to the dawn bird song chorus as I take the dog around the block in the morning, enjoying the smell of spring on our long walks in the warm afternoons.

This approach works pretty well, until 4 AM. Then, I wake with my mind racing and my body tense and scared. It takes at least an hour most mornings to slow my breathing, relax my tense body, and purposefully turn my thoughts from a doom spiral that may well exist, but is not real here and now.

I choose to live today, the only day any of us ever have. 

So, there!

Fairy Wren Moves On

Fairy Wren continued to thrive in her house at the base of the tree outside of Louis' house all last summer, through the fall and into winter. She would leave him polished rocks and other small gifts. In return, he (with the help of his parents) would leave an occasional note asking about life in the magical world of fairies. At Christmas time, they left a card with their family photo on it, and a dog fridge magnet they'd made.

Each time I dropped off a toy, or a note replying to their questions, I smiled as I imagined a small boy's delight when he found the gift.

Then I had a dream one night about Puff the Magic Dragon. I've always loved the song; can't remember a time when I didn't know it. I woke singing the sad part of the song - "A dragon lives forever, but not so little boys", and I knew it was time for Fairy Wren to think about moving away.

Young Louis is five, soon to be six. Somewhere in there, logic begins to take hold as magic fades, and I wanted her to go while she was still real.

So, just after the turn of the year, I wrote one last note, telling Louis that Fairy Wren had gone to live with her friend Puff, in Honah Lee. She was going to play along Cherry Lane, where the two of them planned to enjoy sipping hot tea and reminiscing about the fun times they had playing with their human friends. 

I found a sun-catcher ornament showing a fairy contentedly walking in the woods, and gave it to them with my love.

I cried just a little as I dropped off the note and final gift. Fairy Wren didn't really want to go.

======

Were I in Louis' parent's shoes, I'd have been dying of curiosity, so last week, I sent them a note via the boring US Postal service, 'fessing up to my part in the story. I offered to meet them for coffee or tea, but haven't heard back. Perhaps they didn't get the note, perhaps they have been busy, perhaps they prefer to leave the magic as magic. It doesn't matter. 

I got to be part of the magic, and the memory will bring smiles to my heart for a long time to come.

Good Is.

Ashes to Water

Bob was set free from his gilded cage a year ago. 

You might recall, as I was doing my best to follow the requests he'd outlined in his will for how he wanted his death to be commemorated, I took some palm branches he'd once blessed and turned them to ash, so I could scatter them in the lake he lived next to, in the only home he'd ever owned, as he'd asked. (He wanted his real ashes scattered, but per the rules of the church, such was not one of my options, so this was the closest I could come.)

I took the ashes, tucked into the Salvadoran water jug he'd loved so well, to his funeral services, with all good intention of getting up to Lake Viking shortly thereafter to place them in the water. But, once all the dust had settled, I somehow never found the three hours I'd need to complete my task.

The jug has found a lovely home in the corner of my dining room, and I have taken comfort this past year in walking past and placing my hand on it for a few minutes, connecting to his symbolic presence.

As winter has turned to spring, I started to feel a tug. It was time to finish my task.

So, this past Sunday, a lovely spring day, I retrieved the ashes from their temporary home, and Bob's friend John and I climbed into my car to drive on up to the lake. We pulled up in the drive of Cory and Elaine's house (his good friends, across the street, who had let him keep his boat in a slip on their dock the entire time he lived there), stepped out into the cool quiet of the morning, and made our way down onto the corner of their dock.

We sat down. John said a prayer of letting go. I sang a final song of goodbye as I opened the pouch, took out the small bag of ashes, and carefully freed them just underneath the surface of the water.

We sat in silence for a long moment. I listened to the call of the geese standing on a dock a few doors down, watched them slip into the water, one elegant, the other awkwardly splashing off the platform. I felt the sun warm on my shoulders, saw its light glistening on the wavelets. I let the cold lake water dry on my fingertips without trying to wipe it off.

Time stopped for a bit as I watched a stream of ashes make their way from the corner of the dock out into the center of the channel, as if seeking the freedom of the open water just down the way.

Promise kept, I wept. 

DMV Moment

Once I got back from California earlier this week, one of my most urgent tasks was to get my new car properly licensed before the temp tags expired yesterday.

So, once I'd finished exercising on Wednesday morning (priorities!), I gathered my paperwork and something to read, and headed on down to the DMV.

There, I found myself with a 90 minute wait, which really isn't too bad given how close I was to the end of the month. (Procrastinators of the city, unite!)

I whiled away the time covertly watching the interesting characters gathered about the room, playing assorted games on my phone, reading articles I'd saved, and texting with a few of my friends. 

I tried to send this text to one group: "The DMV is certainly an interesting place to people-watch. Today's wait will be about 90 minutes. This close to the end of the month, I'm not complaining."

To be honest, I didn't even notice when my friends didn't reply - they do have lives after all.

Eventually my turn came, and I was a bit surprised when the gal behind the counter was genuinely smiling as I walked up. She said, "I agree - people watching is one of the bonuses of this job." I was a bit puzzled, but agreed. She then told me they'd seen my text, and had all laughed, trying to figure out who in the crowded room had sent the message. She'd bet on me.

They'd seen my text??? I wasn't sure how that could have happened, but went along with the banter, handed her my stack of papers, and was on my way within 10 minutes. 

Still confused after I'd gotten out the door, I checked my phone when I got to my car. To my dismay, I realized my text had not gone to my intended recipients (no wonder they didn't reply); instead I'd sent it to the (I thought) automated information number, the one which had texted me the link to check my place in line.

Oops! OK. I gotta admit it. I had no idea you COULD text those numbers back and have someone see the message. IF I had thought about it, I'd have figured any message sent there would go into a black hole.

Rereading the message, I can see why they thought I was intentionally sending the message to the office. I am most grateful, since I clearly wasn't paying close enough attention to whom at which I was typing, I was at least kind. 

Note to self...

Cancaversary #13

 

I must admit - back when my cancer diagnosis knocked me off the road and out of my camper van, I really didn't think I'd be alive thirteen years later, still trying to make sense of it all. 

But, here I am. wow!

So far, my cancer has stayed gone, at least so far as I know. The oncology team kicked me out several years ago; I never did have any follow up scans to make sure the surgery had caught everything. But, I have no reason to think it's actively lurking about; I have none of the symptoms which would signal it has resurrected itself.

This year, the knowledge is a bit bittersweet, given what Kate's still going through. Despite knowing the futility of the question, the thought still crosses my mind, "why her and not me???" I'd trade places with her, really I would...

But such is not within my control, so every time the question floats up, I let it go, let it float away again.

This year, knowing she is still here, knowing her cancer is undetectable (for now), I am SO grateful to be here in California to celebrate the anniversary with her. 

I think, somewhere in my head, she was still in the place she was when I'd last seen her in late October - complexion, tinged gray, breathing, a struggle. 

But between then and now, she's been busy doing all the things she can do to help herself heal - physical therapy, massage, acupuncture, yoga, rest - and she's made great strides in her recovery. She looks and feels worlds better than she did when I last saw her. *whew* 

She learned some valuable lessons about the price you pay when you attempt to push through it during her first bout with the disease; is actively working to not repeat those mistakes. When she returned to work two weeks ago, she returned on a part-time basis.

I am so proud of her.

We are here!!!!

Goodbye, Stealthmobile

Last time I brought the Stealthmobile, my beloved 2006 Mustang convertible, in for service, I asked my mechanic, as I always do, if he thought she would still be road-worthy for a while.

"Janice," he patiently replied, "Your car is in decent mechanical shape. But. If this was 1970, that would be a 1950 car. It's running well, but it WILL break eventually. After a car is 20 years old, parts get harder to find. I'm still happy to fix it, but you could be waiting a week or so while I dig up parts, and this is your only transportation. Think about it."

It's been a few months, and yes, I've been thinking. Because as much as I hate to admit it, he was absolutely right.

It's time to move on.

I've gone through most of the phases of grief. (I skipped anger - there's no bad guy in this scenario.)

I jumped straight into denial. 

Nah. It's a great car. What does he know? I've had very little trouble with it. It'll be just fine. (Janice, what happens if it breaks down on the road, and parts aren't available??)

Bargaining.  

OK. I'll get a new car, but there's no reason I can't keep the old one! (Janice, you only drive 6000 miles a year. That's not enough to keep two cars happily running. It's just not. And, if you kept the Stealthmobile, that new car would never get driven. It will not be as fun to drive. You know this. You would own a very expensive paperweight.)

Depression.

How can it have been 20 years already? Stupid passage of time! I DON'T WANNA have a car payment! I want what I already have (only still new enough to drive for a long time). I'm going to be so sad when spring comes and it's the perfect day, and...  the top on the new car will stay right where it is. (All true.)

Acceptance.

It's been a great run. I mean, how many people get to drive their mid-life crisis cars for 19 years? Very few. It's time to let someone else have the fun of driving the car. And, you know, when you drive to Minnesota these days, long about hour six, your butt starts speaking to you very unkindly. You WOULD be more comfortable in a vehicle that doesn't sit quite so close to the ground. Perhaps having a bit of cargo space wouldn't be so awful...

Fine!

I've known for a long time I'd probably be happy with a small SUV, and the new hybrids get decent mileage. I asked the few car guys I know if they had recommendations, and got a unanimous answer. (how often does that happen??) Honda or Toyota.

I went out a couple of weeks ago, test drove the CR-V and RAV4, and picked the CR-V because the seat fit my keister a bit better. (I liked both cars - had to find some sort of tipping point.) Once I'd chosen, I decided to go ahead with the purchase - best to rip the bandaid off quickly - and picked up my new car last week. (Yes, new. The used car market still has very little selection and the cars are almost as expensive as the new versions.)

Which left just one question - what to do with the Mustang?

The dealer, not surprisingly, was unwilling to give me much on trade. I offered it to Joe, who has loved my car as much as I do ever since I bought it right after he left for college, but he doesn't have a garage, and doesn't need another car, and all the practical reasons, so he turned me down. I then asked a couple of car guy friends if they could help sell it, and had it tentatively sold within two days.

But before the deal was signed, Joe came back around. Practical, schmatical. Was it too late to buy the car? I knew Lloyd would be deeply disappointed, but man. I don't care how old he is, Joe is still my kid. So, I backed out of the deal. (I had lunch with Lloyd last week; we're good - he's promised to forgive me. Soon. Once he lets go of the idea of owning the car.)

I had resigned myself to letting go, but have to admit I had tears in my eyes watching the tail lights disappear up the street after Joe came to pick the car up last night. Knowing it was Joe driving did make it easier. He has the skills to keep the car happily purring for a good long time. (a much more affordable pursuit when one doesn't have to pay for the mechanic's labor. ) 

Goodbye, Stealthmobile! You were the best impractical purchase I've ever made. Thank you for almost twenty years of driving fun; of putting the top down and letting my concerns fly out with the wind.

May you have a long life yet - and may Joe have as much fun driving you as I did. 

Godspeed.

Test Results

As scary and hard as cancer treatment is, researchers have made some helpful gains in the decade since Kate first had cancer - one of those gains is the availability of a personalized blood test which will show if DNA from her cancer is circulating in her bloodstream. When it was offered, Kate jumped at the chance to have it - one of the hardest parts of cancer is not knowing if it's really, really gone. 

They used the tissue from the tumor they extracted during her surgery in October to develop the test, and took a blood sample at the end of the month for the first run. It took time for the test to be ready, and the results from that first draw came back in early January. 

They showed a small level of tumor still circulating in her blood.

When she shared the news with me, my heart plummeted. It was SO NOT what I'd wanted to hear. I cried inside, and mentally braced myself against the possibility her treatments might not work to get it gone.

But then logic stepped in to assert itself. The test was done after surgery, yes, but it was before she went through her five weeks of radiation. Perhaps, just perhaps, that particular trip through the valley of misery wasn't just-in-case. Perhaps the rays had caught the remaining errant cells.

I waited with bated breath for the next few weeks. Hoping anyways, but afraid, so afraid, the cancer had established itself elsewhere in her body, out of reach of the radiation treatment.

I thought we'd have to wait another month or two for them to run the test again (it's an expensive little bugger), but they ran it at the end of January.

This time it came back negative!!!!! She is currently NED - No Evidence of Disease. The beast has gone back under cover! (I don't quite dare to hope it's vanquished forever.)

This time I did cry. It's been a week. Tears of relief still spring to my eyes and something eases in my chest so I can breathe a little easier whenever I think of it.

She didn't go through all that for nothing. She really, really, really (three reallys!) has a chance to get better a second time. I have no words for how comforting I find this knowledge.

I do know that knowing it's gone (for now - my brain insists on adding the qualifier) is making the Lupron (aka that damned shot)-induced process of instant menopause easier for her. Estrogen withdrawal is not fun, she is grumpy, exhausted, and hormonal, but it's also not the misery of chemo or radiation. It's her best shot of keeping the beast at bay, and she will follow the regimen as long as she can. 

Speaking from experience, side effects can become overwhelming over time - but I know she will take it one day, one step, at a time. 

We have today.

Thank you, thank you, thank you!

Tough Week

I was determined to ignore the news this past week, but it didn't work so well. I've pretty much avoided reading all political stories since the day after the election, and I stuck with that, but. To properly ignore a story, I have to know what's in it, and so I read the headlines. The headlines are bad enough.

I will say this for the man - he showed us who he was.

So much upheaval and disruption. None of it is helping to lower the price of eggs, no surprise.

I am grieving the country I thought I lived in. My emotional regulation center doesn't seem to distinguish between sources of grief, and so I've found myself also missing Bob, who is not here to tell me it will all be OK, and missing Libby, who will NOT be turning 59 when her birthday rolls around next week. 

*heavy sigh*

I'd want to DO SOMETHING, but I'm already doing the things I can do.  I never stopped the protest donations I started the first time he took power - I knew they were still needed. (If you're curious, the donations go to the ACLU, Planned Parenthood, Gabby Gifford's anti-gun organization, and Harvesters, my local food pantry.)

While I know I am not alone in my frustration and fear, I find these to be isolating emotions, and I haven't reached out for the support I know is out there. Soon enough.

In the meantime, Sylvester still needs his morning walk. 

We step out each morning into the crisp, cold, clean air, right around the time the sun begins to light the eastern sky.

We stop every few yards, especially for the first part of the walk. He needs to sniff the important messages left on the grass and the bases of the trees, and thus I have some time to look around and notice the world around me.

The streets are quiet.

Each morning, the gray begins to lift a bit earlier than it did the day before. 

The last couple of mornings, I've heard snatches of bird song! 

Tactile reminders: This, too, shall pass (but that doesn't mean it doesn't suck to be in the midst of it).

I just need to take one more step. I can do this.

Thoughts on Fear

If you've followed this blog for a while, you know one of my mantras is "Cancer isn't the enemy, Fear is the enemy." Given the givens of my world, I've had lots of opportunity to deal with feelings of fear popping up over the past few weeks, and so I've been mulling this over. Quite often, as a matter of fact.

Because I think I've been wrong. Or, if I want to be a bit more charitable towards myself, I think I've oversimplified my mantra.

Because Fear isn't my enemy. Fear is an emotion. It belongs in the uncomfortable feelings bucket, along with anger and jealousy, but it's not an enemy. Rather, like all the emotions which float across my internal sky, it is information. 

It's been trying to tell me something. And, it's been spot on. I DO find cancer scary. I DO find uncontrolled fires scary. (especially when they are threatening my personal people!) I DO find the current political scene scary. The danger is NOT all in my head; it is real, and Fear is doing its level best to try to protect me. 

So, I've been working to change my approach towards Fear.

Because, no, Fear isn't the enemy. But when I ignore it, or try to shove it under the rug, or stuff it in a pot, it does become a problem. It shouts ever louder and jumps up and down to try to get my attention, it makes a bump for me to trip over in the rug, it spills out over the edges of the pot and makes a mess on the counter. It grows. It traps me in a corner and stops me in my tracks.

But, when I invite it in for tea, and sit with it at the table and listen to its warnings, it shrinks. It just wants to be heard. After we have finished our tea, I've been thanking it for alerting me, for trying to keep me safe.

And then, I've been moving on.

Because the real enemy is the part of me allowing Fear to stop me from living today, the only day I have. I have discovered the way around that part - whatever that part is called - is to take one next step. Then another. Enough steps, and this, too, shall be behind me.

My favorite internet thought for today:

  

This, too, shall pass - but that doesn't mean it doesn't suck to be in the midst of it.

Amen!