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Check out what my nurses left me...kinda looks like a jar full of lollipops.

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There's a really good story behind this. @jlochlinp

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Channeling my inner Iris Apfel today thanks to @lad_named_felix

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#Thanksgiving! Clockwise from bottom left: sweet potatoes (my half had marshmallows), oyster stuffing, spiced cranberries with zinfandel, me making gratitude jazz hands.

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Thanks to JLP’s work team, spearheaded by this lovely lady, I got my Deep Dish Maple Bourbon Cream Pie on Thanksgiving (you may remember from my last post that I really wanted to make it but just didn’t think I had it in me)! I am so grateful that my husband has such a dynamic, caring, wonderful team. We are so lucky!

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What if This Was Your Last Thanksgiving?

Ah, Thanksgiving. When I was younger, it was a FEAST, man. My grandpa handled most of the dinner, including his famous oyster dressing that of course no kid could possibly force down, let alone enjoy. We had what every good Midwestern Thanksgiving should have. The gargantuan turkey. Mashed potatoes loaded with butter. Sweet potato casserole with marshmallows. Green bean casserole. Jiggly platters of both chunky and smooth cranberry sauce squeezed straight from their cans. Hot dinner rolls. And of course, Jell-o salad. Bananas and strawberries suspended in red Jell-o. And/or shredded carrots held motionless in orange Jell-o. I can’t remember if we had both at Thanksgiving dinner or if they traded off.

As the years have passed, Thanksgiving has gotten less and less celebratory. Traveling has become harder, someone always has to work Black Friday, or we’re so exhausted from having to squeeze five days of work into three to be able to take the time off that no one has really wanted to go all out. I think the last few years, we’ve gotten a turkey and then bought sides from our favorite carryout counter and pies from our favorite bakery, decorated the table, bought a couple bottles of wine and bubbly and called it good.

This sounds so dumb, but realizing this might be my LAST THANKSGIVING has somehow made me nostalgic for that feast I grew up with. I want those sides! I want that Jell-o salad! I want the oyster dressing and cranberry sauce next to each other on my plate so I can eat them together like my mom taught me. I do have some concessions: I can do without the green bean casserole, and instead of canned cranberry sauce I’m making a pretty rad-looking spiced sauce with zinfandel from Epicurious. I’m also making some pretty fun sweet potatoes with brown sugar and pecans and just putting marshmallows on a quarter of the dish so MamaJo and JLP can enjoy the rest.

So we’re going for it! I’m making the sides nobody else will probably eat, but I’ll cut down the recipes to “Mandy size” so I can enjoy them. I know my limited breath and energy means I’ll be at one of the three separate markets every day this week, but that’s ok. I’ll cook ahead what I can, and we’ll order pies from the local bakery. Though I REALLY wish I had my druthers and could make THIS Deep Dish Maple Bourbon Cream Pie.

MamaJo is on the turkey, her famous “mashed potato cloud” and a green salad. That’s enough Thanksgiving for her and JLP; I’ll arrive with my Midwestern tokens of Thanksgiving FEASTS and be prepared to load my plate and rattle off my list of thankfuls. Which is quite a bit this year, given the fact I’m even thinking about

a) shopping b) cooking c) EATING.

(As an aside, did you know I’ve gained 10 pounds since going into hospice? I eat whatever I damn well please, and it stokes the hell out of the nurses!)

What about you? What would you have if you were pretty sure this was your last Thanksgiving?

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Palliative care specialist BJ Miller on What Really Matters at the End of Life. “Healthcare can become about making life more wonderful instead of less horrible.”

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Weekly prep.

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You’re mine and that’s it. Forever.

Photo by Kim James.

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Today's #ctfd: stocked up on Halloween Candy (also I needed peanut butter crackers). Also holy crap today's #freshair is intriguing!

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Today's #ctfd: Donut dog and TV in bed.

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Today's #ctfd. Goodies from @tinroofbakeryandcafe and RHOC on the tube!

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More on Hospice

Hospice. If you haven’t been around it, it’s such a scary, final-sounding term, right? Like, “all hope is lost, she’s gone into hospice.” When we were weighing the options of stopping treatment, my mind skipped right to this very irrational vision of me, immediately shriveled up in a hospital bed in our spare bedroom, hanging on by a thread. But it’s not like that at all; in fact, it’s really the opposite. Hospice is your own personal team helping you get the most out of the time you have left, and they’ll be as hands-on or -off as you need them to be.

It really is a “you do you” mentality. And they’re just here to help facilitate it. I have nurses who visit once or twice a week, who’ve gotten me on this magical concoction of meds that make me feel better than I’ve felt in ages. We sit and have coffee and chat and review my chart, all in the comfort of my home. And then I can just go about my business as usual, whatever that might be. Date nights. Writing. Froyo runs. Puzzling. Whatevs.

Because you do have to give up other avenues of care to be enrolled in hospice (you can’t, say, be undergoing chemo AND be in hospice at the same time), there is a feeling of finality to choosing it. And yes, hospice is there to make the end-of-life transition easier. But I think by sharing this, my hope is to rub away some of that stigma, that “quitting” treatment and going into hospice is admitting some sort of defeat. Or that somehow hospice = deathbed.

Lord knows I questioned the doctor whether stopping treatment meant I was “conceding.” I really said that word. Like, what, I was letting the cancer win if I chose a more compassionate way to live my life? One where I could order in (and actually ENJOY) ribs with all the fixin’s on a Sunday night?

It is so the opposite. I have been given the opportunity to live this chunk of my journey in Mandy style, maybe just toned down a tad. And yes, there will probably come a time when I will need that hospital bed in the spare room, but if you asked me today, I’d say it was a long way off. So far it doesn’t even seem tangible. But when the time does come, I know I’ll be in very capable hands. And I’ll have been thankful for this gift of time hospice has given me.

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On Terms

It was a gradual decision to discontinue treatment and enroll in hospice care, but looking back, the signs were there for a good chunk of time. There was the reaction to one of the chemo meds three rounds in a row. No matter how the doctors and nurses tweaked the orders, my body just would have preferred to forego the Taxol, thankyouverymuch.

There were the trips to the ER after the last two chemo treatments, once with excruciating pain and another with a very. scary. nosebleed situation (my first trip in an ambulance!). And of course there was the realization that my “feel good window” between 21-day rounds was getting shorter and shorter, and my days and nights shuffling from bed to bathroom to (occasionally) outside in the same athleisure wear were getting longer.

When none of your docs are pushing you to go for it, and instead start asking what’s on your bucket list, or what you would do if you had a period of life that had some quality attached to it, it’s probably a pretty good sign that the treatment window is closing.

Don’t get me wrong, I could have pushed. I could have taken the last two rounds of treatment (though, quite frankly, it would have been hell). I could have sought out the latest clinical trials and put all my hope eggs in the miracle basket. But it didn’t (and still doesn’t) feel right. I was a mess, man. There was no Mandy, really, those last six weeks of treatment. I just didn’t have it in me.

After 6 months on the same 21-day cycle, when my doctor just baaarely finished uttering the thought that I didn’t have to return to treatment if I didn’t want to, I felt a sense of peace and calm that I haven’t felt for ages. It was such a realization that I could live out this last bit of my journey on my terms!

I still felt like I was quitting, though. Of course there were lingering doubts. What if that miracle was out there and I wasn’t giving myself the chance to experience it? But I also didn’t want to take the chance of living a miserable existence while I chased that rainbow. Since giving up chemo and enrolling in hospice (and tweaking my meds a bit), I’ve felt so much more like ME. Yes I’m still tired, but my appetite’s coming back, my lethargy has waned, and I’ve even cracked open one of the coloring books so many kind souls have gifted me. I’m drinking coffee again and am even going out tonight for a STEAK DINNER DATE NIGHT with JLP for our sixth anniversary! (I will probably take three bites and bring the rest home, but that’s ok too! I will have gotten dressed, put on my eyebrows, and LIVED LIFE for an evening!)

I don’t know how long I have left on this journey, and really I don’t want to know. But I’m glad we made the decision to live life on our terms, day by day, for as long as we’ve got it. What a fucking gift.

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On Being Selfish

I just spent an hour googling “helpful tips when someone you love has a terminal illness,” but I didn’t like some of the advice. Seems like I’m an anomaly even in dying. The biggest difference? I don’t want anyone around. Maybe it’s not permanent, but that’s how I feel right now. I don’t want any visitors. I don’t want to host. I want to sit around, watch TV, lay with my dogs, eat whatever my body’s craving (it’s all sweets and carbs, you guys. I own a tub of Red Vines). Scroll Facebook and maybe crush some candies. I don’t want to talk to anybody. I DON’T WANT TO BE ON.

The pain I feel in my abdomen after being upright during a couple-hour visit is too much. The tightness in my lungs after talking for a couple hours is not worth it. So what are these people gonna do, just sit by my bed and stare at me? I’m too lucid for that. Can you say AWKWARD?!

That’s it, right? I’m too healthy for sit-by-her-bedside-and-read-her-stories visits, and I’m too sick for come-over-and-hang-out-and-chat visits. What the bloody hell? 

You know what I’d love? Is if someone said, I’m coming over for your grocery list at x o’clock. And I’d have the most detailed list for them! Plus cash! And reusable bags! And I wouldn’t give two shits of they put all the food in the right places when they returned. I really wouldn’t!

And someone else could say, are the dishes in your dishwasher clean or dirty? I’m coming by at x o’clock to do them. And I’d let them! But I’d stay in bed and not feel guilty about it one whit. And they’d do them and leave! But before they left, maybe they’d check to see if I had any laundry that needed folding or ironing. I don’t even care anymore if someone else handles my chonies.

And someone else could ask, did your dog get a walk today? How’s he handling all that construction behind your house? Need me to run him around a bit and tire him out? (Because do you know how tiring he is every fucking day when there is a crew of roofers behind his house that he wants to MURDER?!)

Or, I made you a lasagna, pop it in the freezer and enjoy whenever. I’ll drop it by your porch at x o’clock, leave the ice chest outside.

And nobody has to sit with me, or watch movies with me, or write me to tell me how they can’t handle this. They can just pop in, do, leave.

And I know part of this is my fault; up until 6 weeks ago, we were handling it all, so we politely declined help. Also I was feeling super shitty and didn’t want anyone around, even if it was to help us out. I didn’t have the energy to get up and unlock the door, even if it was for someone who was willing to do my dishes.

But it’s different now. Chemo wore me the fuck out. Is it ok to ask for and accept the help but decline the visits? It feels so selfish, but at the same time, I’m ready!  

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Fuck cancer.

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Big Talks

At the behest of UCSF’s social worker, I called the Social Security Administration yesterday to talk about long-term disability. She said the application process can take six months to a year, and most initial applications automatically get denied. But lo! Not if you have “a disability that will result in death” (per the application). If you’re filling out the form online, and you click that little box, a blue message pops up that asks you to call your local Social Security branch immediately.

Guess what? Turns out when you have terminal cancer, they not only fast track your app, they’ll even fill it out with you over the phone! A lovely lady went through the process with me and all I had to do was answer the questions. It was so easy! Almost pleasant, even! The process might still take 30 days, but it’s nowhere close to what our kind social worker warned.

This is one of many Big Scary Tasks we’ve had the pleasure of working through since my diagnosis in April. The shitty thing is, I’m going to die of this disease, but nobody really knows when (or how. Will my organs fail? Will I get pneumonia? Septic shock? Infected cat scratch? NOBODY KNOWS!). So I have all these tasks to do while we wait for the inevitable:

Find a funeral home and make arrangements (I’ve narrowed it down to two, based on their websites, but I guess we should still make appointments).

Talk to a lawyer about my “last wishes,” then inform family about them so there’s no confusion if I’m incapacitated and can’t express them myself.

Make a binder for JLP about our monthly expenses and when bills are due.

Go through all the boxes I’ve been meaning to get to for MONTHS and shred stuff like old cable bills (seriously WHY do I still have those?!).

Clean my office in case the time comes that I need hospice so we can put a hospital bed in there.

I think off and on about writing those big, final, emotional letters to friends and family, but I just can’t do it. I hope when the time comes they know that I loved and cherished them. If there is an afterlife (and I’m pretty sure there is), I’ll more than likely ask the powers that be if I can stick around somehow so I can still be here for them.

The kicker is, I feel ok! Sure I have some pain (sometimes more than others), I’m pretty tired, and tomorrow I go for a biopsy on a new lump they found in one of my boobs, but on the whole, I’m up, I’m mobile, I can drive myself places (when I haven’t taken a pain pill), I can write long diatribes (when I haven’t taken a pain pill). I don’t really see “the end” coming for a while. But I guess this part is the weird gift, right? I can make these big plans and have everything in place to make it easier for JLP. If I’d had a freak accident or something, and we had none of this figured out, the poor guy would have so much to wade through on top of his grief! It is a weird thing to be thankful for the time I’ve been given to make my “transition” easier for the people I love. But there it is, even in this crazy situation, another thing to be grateful for.