Sunday, June 26, 2016

Milestone


The One Thing I was (internally/majorly)whining about when I was in the hospital in September was this: I should be on my bike. Yesterday after work? 




Not far, not fast, completely inelegant but back. 

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Something Weird with the Blood Lady. 

The hematologist. We get in there with my list of only two questions because we can't remember why we have to be there at all. We're starting to get really jammed up with all these requirements and appointments. I've seen 14 different doctors since August of last year. Maybe even more. 

I wasn't even sick. 

Get there, get handed my list of medications. No Xarelto. The -we think she's an LPN maybe? We had a fine chat about soul food with her. McArthurs-she said. I've never been. Priscillas. She'd never been. Anyway, she didn't know how to spell Xarelto to add it to then list so I went on my phone to find this photo because I wasn't sure about the spelling either. 


This is a goofing around picture I took so I could make golfing jokes. Not as part of my permanent record. So now she wants to know how many milligrams and I'm like...aren't you guys supposed to know that? This is what's happened at every single appointment. They hand you a list of your medications. 

Doctor comes in. Blah blah blah. Goes to look at my files on the computer and must have realized that this All Important Life or Death Blood Thinner info was Never Entered. She asks me what day I started taking it. I was like.....no clue. Nobody knew the dosage. And she said something about me bringing the bottle in with me. Like that I should have. Or something. 

This is the medicine that I get frowned at for skipping. And nobody knows anything.

Then I remember. 

She had told me-we were talking about the question of me needing some of that fine medic alert jewelry-the thinking is, if I fall and bonk my head-it's game over, right? But she told me to simply write down all my prescriptions and put that list in my wallet. 

So I had that. Imagine. 

And if you learn nothing from this blogodochio of foolishness. It would fill me with happiness if you did that too. 

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So I get a box. It could not have come on a crappier day. Via our friends at Amazon. You know, I tried to be a part of that yearly subscription thing but it just freaks me out to have to pay to be able to pay. Like cable. Like costco. No can do. 

Not at this time, anyway.

So, in the box is a gift. Wrapped even. It's an ice cream cookbook. Yay! 

But what you don't know is that we had a stern discussion on this topic-it was me being stern-which is such a bummer when you have to do that to yourself. But it was like, ya know what? It would be CRAZY to spend money on an ice cream machine right now. We have so many things that need to get done.

But I HAD gone to the Goodwill and I HAD scored a-what I would call a brownie pan because that's what P really wanted for his birthday(actually he kept saying he wanted a 'water cake'. A cake made of water. Uh-huh.) and I HAD found a recipe for strawberry granita. Never heard of it. Never made it. Sounded interesting and not a lotta ingredients. Way up my alley. 


And then Amazon again. The next day. Delivering an ice cream scoop. And I'm thinking....Yayugghhhhhhhhh. 

Couple hours later. The downstairs bell rings. (Hey did you know I don't answer my door? True story.) I look out from the sun porch thing to see who it is and there's a green shirted guy racing away and a BIG BOX sitting on the stoop. 

Uh-huh. 

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So honored by everyone's kindnesses no matter what shape or form they arrived in-I smiled all day. 





So, make this.(Or have your kids make it.) And cut the sugar down to 1/3. 

You're welcome. 


Saturday, June 25, 2016

17 trips to the bathroom

4 vials of blood drawn

1 big argument

5 dollars worth of watermelon

1 nice surprise

1 uncool disappointment

1 Friday killing doctors appointment in the lower level of the cancer center


6 upcoming doctors appointments scheduled

390 page(good)book finished while lying on my stomach for the first time in almost a year lying on my stomach finishing a(good) book

20 milligrams Xarelto prescription down from 30

5 library books to return

24 17 minutes till I have to go to work

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P is a recycler supreme(understatement).

I got 2 shots a day for a while there and we were kinda left wondering what we were supposed to do with the needles. Not the sort of a thing you want in your dumpster, right? Altho the one in this photo was just floating around the neighborhood and ended up by my car as opposed to my dog's foot or something. 



I think he tried 4 places or maybe 6-I can't remember. Which was the dumbest one-let me think. I think it was one city service department that told us to come and get some stickers to attach to a laundry soap bottle and THEN we were supposed to put THAT in the dumpster. Like if the jug ended up in a landfill where the rats were all named Templeton who had a spider to interpret-everything would be okay. 

Another medical facility he visited had no idea and said they'd call back and They Never Did. 

The pharmacy didn't want them back.



A little ridiculous, no? Here they are making their way to the hospital where they would be included in the hospital's collection of unhappy sharps. 

You say you want a revolution.

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Thursday, June 23, 2016

Monday I thought I was dying.



When I thought I was dying, I found myself with a spare 30 minutes waiting for the Loyola switchboard to wake up and I looked around to decide how I wanted to spend my final moments of freedom and I banged my children's book out. Pow. Done. Happy. Happy. Happy. 



Then I did something I've never done before and that was put in a call to the doctor. Pronto as opposed to stat. And the Loyola phone woman-who was joyfully hilarious-which I find especially wonderful-that you can laugh like that when actually think you're on your way out-this was crack of dawn Monday morning asked me if this was acute and I didn't really know. 

And she said, in other words, are you trying to get in today? And I said, oh yeah. And we both cracked up. And then she accidentally called me sir and we were both laughing again. (She said she was going to hang up and go get more coffee.) It was going to be either 11:15 or 4:00 so I took the 11:15. 

Then I texted work. The people immediately above me are so good to me.


My primary care guy is my interpreter of maladies. 


It's the thyroid meds he thinks that might be giving me such a hard time. He explained(and please don't take this as actual medical knowledge-sometimes I wonder if I ever catch it all-there's so much in the department of terminology)that when you get your thyroid out, they give you a nice blast of thyroid substitute because if there's any thyroid they might have missed in the surgery? They don't want that engine kicking in. And that puts you in the realm of hyperthyroidism and that comes with a list of symptoms and they suck. Remember when I wanted to take them for a spin? Hmmmnot so much. 

In addition, the dietary changes we've made. (Subtle. Extremely subtle.) It is those kinds of maneuvers that set up your digestive system for fireworks and if you stop because they get too uncomfortable? The next time you cross over into green vegetable land-you're going to experience the exact same thing. ("Green means go", said my library supervisor. "White means stop.")

We talked about the hernia repair and the blood thinners and he was able to explain that it's people with A-fib that the fine print on the Xarelto commercial is directed toward. Not me.  He said it was a bad idea to skip some of the shots after the surgery because that's exactly when you'd want to NOT develop additional clots. 

oh. 

And that we can speak to the blood lady about the hernia when we see her again. Which is tomorrow. And that some people love Dr. Pink Shirt and I was like, oh yeah? I think he's a jerk.


Primary Care doubled me up on of my pills, wrote me a note to go to the Cancer program at the gym, told me to call if I had any questions and I was on my way. I didn't feel different but I felt a little better.

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Cool thing about working at a library. Your co-workers are readers so they Know Things. Karen mentioned FoodMatters and I watched it and I guess my most gigantic tidbit I walked away with was the guy said you should spend all your money on the best food you can get. I have always done the opposite. I think watching P. He gets what he wants-he doesn't try to save 37 cents like I do. It's a mistake. I'm trying to do better. Viva la watermelon! 

Ginger texted her friend to find out an herbal sort of a stomach thing  she swears by. I'm gonna check it out and let you know. 

And I'm surround by books. I'm reading Life, on the Line by Grant Achatz. So far-really, really, really good. 
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My Mother's      did not get along with his       . My Mother considered that one of the great tragedies of the universe and swore the same fate would not befall her          

She never considered the effect it would have when one person had to surf the turbulence created by another. You know like, for 53 years. 

This week          requested I gather       from the rehab facility he's been in for two weeks. It's a six day work week-this week and next for me but P could do it because his hours are weirder than mine so I made the calls to set it all up. 

You sure you want to ask him, I said to my Dad. Because I'm not playing around with this like last time. It's not nice. 

I got a call from the Case Management worker that           was in her office insisting she wanted an Actual Family Member to collect him. The Case Manager said, I don't know what else to do but to call you. 

"I don't. Know what else. To do." 

This kind of thing tears through my stomach like a serrated knife. 

This shit has got to stop. A theme for the week, eh?

Onward. 

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Wednesday, June 22, 2016

One of the medications I'm currently taking lists a top side effect as irritability.

May the Lord have mercy on your souls. 

Thursday, June 16, 2016

She towers in beauty, in the night
   of airless condos and overtaxed ceiling fans;
And all that's best of pre-cut shrink-wrapped produce
   Placed on her shivery shelves of fresh delight:
Illuminated by her single bulb
   What heaven to my tongue delights. 
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One fine day, I came home and on my way up the 37 stairs, I stopped to fetch the mail. In the pile of AARP applications and hospital bills was a small envelope from an old friend.

I got upstairs, opened it up, scanned her note and my eyes-which to my recollection have never bawled-even once during this whole extravaganza-got immediately damp.  There was a check enclosed. 


"Well, there it is, then", said my wicked evil internal voice. "Actual proof that you're a failure." 


(Can you imagine the leaps I have had to make to get even anything noteworthy on my resume with a rotten internal voice of that caliber? Do you know what it said when I got the initial 'You have a Cancer' call? It said, "Well. Maybe at last you've found a way to lose weight.")


I shoved my friends envelope into a folder. I was just. Overwhelmed. 


I peeked at it every so often like a backwards Close and Play. I didn't mention it to anyone. I needed time to decide where to put it. I wanted to get something equal to the magnificence of the person that sent it. Monumental even.



Here's something they don't teach you in cancer school: While I completely understood that the only actual vacations I'd be going on this year were lived vicariously via Facebook posts(I had a fabulous time in Italy, thanks.) The rest of your obligations don't take a holiday. You just fall further and further down the hole. 


The fridge was dying. Everything in the freezer was mush. 'Is that red stuff last years rhubarb?' we asked at the sight of torrential goo. "Ya know" I'd say picking up some half-frozen, frozen dinner "I hope I'm not getting botulism-after all this." 


So the house, has been upside down getting ready for the delivery. (And it's not even a house-it's a one bedroom condo. How do you lose a 38 pound corgi mix in a one bedroom condo?) And that's how the toaster ended up under the bed.  


She arrived Tuesday. Miss Frigidaire. Between 1 and 3:30 which is a fancy way of saying: 3:33. In her first 15 minutes of new life, Grantley and I were sitting here and our heads turned when she made herself a whole new noise we did not yet know. 


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Tuesday, June 14, 2016

My house is such disarray, this morning I could not find the dog. 


Uh huh. 

Monday, June 13, 2016

True Story






You know this commercial, right? I'm always joking that all of a sudden I have this crazy urge to go golfing like my boys Arnie and Chris and Kevin and the race car driver guy because I take this stuff now. 

My Mah used to actually admonish me that my failure to learn golf would make my chances at meeting a suitable suitor extra small and thankfully she was wrong about that too. 

We watch a lot of Channel 38 around here. We get 2, 5, 9, several variations on 11 and then blah blah blah 38. On 38, you get a whole buncha episodes of something in a row. Blue Bloods, Law-n-norder, and that creepy one-where they call people 'The Un-sub'. 

Criminal Minds. 

We were watching whatever the ones are on Saturday night and what comes on but this


Uh-huh. 



Friday, June 10, 2016

Here's what happened. We had waited two weeks for this appointment(post Buh-bye Thyroid Day) and P points out that this hernia business actually started way back in February(Funny how pain slips your mind. Good funny.) and if you don't remember exactly(who could blame you?), the deal-as we'd last understood it-was that they were going to do the thyroid and the hernia at the same time but they-the team-my fabulous cancer smashing team that I had just been walking around telling people how great I thought they were-we were to make the next available appointment with this Head Surgeon dude(aka: The Boss) to see about getting the hernia repaired. 

Pre-appointment home discussion was about when-like hey do you think they'll let me do this maybe in a month or something because I have got to check in with my various employment situations and ya know, after all this shit and by shit I mean all those thousands of needles shoved into me-okay maybe more like 75-my skin just needs to rest. And-I don't care if it's a 5 week recovery period-I Want This Done. 

We got there. My vitals were perfect or so they said and the two residents were going to be in next and we waited and in came this pink dress shirt filled by 'The Boss'. 

No residents at all. Impending doom. 

He didn't sit. Then exam was incredibly brief and the news was this: Your hernia is not your biggest problem. 





And we were like....wait, what? 





And he went on to explain-and here comes some fabrication for the purpose of illustration on my end-when the portal vein got a clot in it, a whole bunch of new veins(Imagine cooked spaghetti. That's what I'm doing.)rerouted themselves to my liver and so now, cutting into my belly wasn't going to be as easy as a simple slice. It was going to be Chef Boy R Dee in a can. 

He didn't say anything cool or illustrative or encouraging-seriously we could have used some sort of(ANY sort of) lilac scented marker of pleasantness or something in this situation but charm school was clearly not on his bio. He crossed his pink shirted arms and stood there. 



I've read that within a group there's always gonna be one person who fills the silences and that person turned out to be me. 'So that's it then.' I said like the brilliant genius you've come to know and love. (ha). 

Later P said, you know, he could have sent that paragraph in an email. The actual doctor time was probably 4 minutes. Maybe. 


I dunno, I certainly feel bamboozled at this point. Or baited and switched. Or actually more like permanently disfigured beyond what I imagine would be accepted in the colon cancer coloring book. 

We were walking Grantley later that day, and we passed an old car dealership and for the first time, I really looked at my sideways reflection in the window-P was watching me. And I thought, God damn I look like I have a cantaloupe in my belly. 
(Somebody is going to approach me and tell me how hilarious they think that last sentence is. Believe me-it is not.) 

I have forcibly resisted making a list of things I traded to rid my sorry ass of cancer. Like coffee. Or my taste buds. Or my jeans. T-shirts that are not V Neck. Or the mystery of my digestive system. Oops I gotta stop. I don't want to be that person. Nope nope nope. 


What happens next? More waking up to take a pill and then taking another and then after toast, another. The cancer cook book came. Black and white with no pictures. What a gigantic bummer and a half o rama. I told P this morning-I want to do the 3 Dune Challenge again. We had just completed it right before the cancer wagons started circling. I was looking at a Survivor work out program that had been absolutely free at the Loyola gym but they added a massage and some nutrition advice and turned it into a close to $300 for two months proposition. Yeah no. 

So we'll see, huh? 

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Thursday, June 9, 2016

I was massaging last night and the lady wanted to talk which is Fine By Me-altho I've really become adept-if I do say so myself-at not saying a word-I mean like: absolutely nothing. 

I'm not supposed to say nothing. I'm supposed to "check in regularly" (better like this or better like this or better like this?) but uggh, it ruins the entire vibe so I try and tell them up front to go ahead and speak freely but-for me-I don't think endless "howz the presha?" questions are at all relaxing and they either get it or they don't. (I think I-for sure-lose points with the Secret Shoppers. How many people my age get Secretly Shopped, I wonder. Cripes.) When I'm completely silent, I can coax the bolster out from under their ankles by sliding my hand under their calf and lifting just a tiny bit. They get it. 

The discussion topic last night was: What Is Wrong With People These Days? 

I always have to speak carefully as my existence depends on tippage-so I let them take the lead and then I agree or make the appropriate 'un-huh?' noises or a lot of times quote my Mother-she being of the generation born just past the Deeeeeepression. I gotta lotta nuggets to work with-believe me. And if they happen to say something really awful(and sometimes they do), I respond with,"Is that right?" and then go silent again. 

Last night, we got to the topic of the Target bathrooms-I was at the height of my comedic routine where I say: Why don't people just go to the bathroom at home if it's such a terrible problem?!?! And the woman said," Oh. Well, those bathrooms are for, you know like those people who've had colon cancer and things like that."





HA! I was howling laughing inside. I'm the keeper of the Target Bathrooms? Me? I could not imagine anything more fantastic than being able to shut that entire ridiculous "Look out! The Transgenders are coming for our children!!!!" conversation down once and for all. 

If only. But I kept my mouth shut. Because I knead the dough. : ) 

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Extra super double tired tonight. At my library gig, we divide the job by three. Two parts of which are standing and one is sitting. This week in an Incredibly Bold Move, I determined that I no longer need to hog the center time period. Everyone I work with has been SO generous in making sure I am okay and now it's time to start pushing a little harder. Yay them and yay me. 

On my way in every morning I get to make this decision: 



And I try try try and to use the door on the right. Baby steps, huh?

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I am on Page 70 of this book and it is, quite frankly, kicking my ass with his exquisite writing, giant insights and *gasp* impending doom. 

If you need something to read. 


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More l8r. 

Sunday, June 5, 2016



I ask you, how, could it possibly be so 

difficult to juggle four pills?

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I've been wanting to write about the character of a caregiver but I've always felt seriously jinxy talking about relationship details(it's never really a good idea) and that is not to say I live in perfect town-in fact at a recent city street makeover meeting there was some woman who burst out with the following sentence describing my street(ready?). 

She said: IT LOOKS LIKE A GHETTO! 
IT LOOKS LIKE A GHETTO! 

Isn't that fantastic? It puts me in the mind of Raymond

There was another neighbor once, who said she felt bad about moving to more northerly OP because she'd no longer be 'keepin' it real.'. I didn't know people actually said things like that. How embarrassing. 


Anyway, here's a little story that happened yesterday(It speaks to character, your honor). We went to get some sushi. Not real sushi. Those roll things. At Super Tony's. Department of Trying To Eat Better. Right?


We come home, get out of the car and start walking through the ghetto-I mean, we start walking toward where we live and I see this woman who lives in one of those Hover Round wheelchair scooter things. We've seen her before. No big thang. 

Until! I see a grocery bag filled with a loaf of inexpensive bread laying on the sidewalk. (Laying lying-I can never decide.) All I said was something like, hey-I think that bag belongs to that wheelchair lady and... 

...he's off. 

Running after the lady in the chair. Hmmm, I thought. Nice. 

In the ghettoooooooooooooOOOOOOOOOoooooo. 


Friday, June 3, 2016

I had been wondering if there was going to be something-through all of this poking and prodding and talking and nodding and mad dashes towards 1:30 appointments and medical bills that grow larger by the minute(no, really. They do.) and frabizillions of blood tests-that something within all of this would remove my sense of humor. 

I found it. 







I'm pretty sure it isn't even anything specifically cancery. I'm going to eliminate this one over-the-counter-that-I-thought-I-was-being-so-proactive-by-asking-the-pharamacist kind of a medication and see if my mood swings North because I tell you what, 














this week has not been pleasant at all. 


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My hair seems to have sucked up more than enough pigment-so that whole 'make it darker just in case it doesn't stick to post surgical hair' thing? Not applicable.  So it's this weird dark color which bothers me not. Not even a little. It's all entertainment to me. 

This is not to say that I am not SERIOUSLY(you heard me) disturbed by that kinda 'it makes you look SO MUCH YOUNGER' sort of a comment. 

'My Dear,' I would have said if I was in my right mind which I clearly wasn't,"Where DID you get the idea I wanted to look younger?"

Pfffft. 



So I think it's fair to say, it's been a rough week. 


On the good side-and we all deserve some good side today, don't we? I had a nice visit with my new best friend the endocrinologist. She smiled at me a lot



The cheese sat alone. 
P couldn't make this appointment. 
Frowny face.* 


I can't find my notebook* with all the official terminology but the thyroid gods have smiled upon me(it seems) and they're not recommending the frightening nuclear thing they drop down your throat(at this time) and generally speaking, with the exception of the endless checking-in I'm going to have to be doing for all of eternity, everything currently looks swell. Yay. 

I was, however, taking the pills wrong. 

I dunno. I thought pills could be friends and peaceably co-exist. And ya know...what is coffee but bean water? How could simple-even weak-bean water screw up fake thyroid? 

Oops. 

So, I'm getting better figuring it out. Kinda sorta. And I think all of this medication twisting, on top of just your basic life drama at the age of 53, kinda sucked the current life force almost all the way outta me. 

But I did about a half a weeks work at the library and today I did three massages and that, my friends, is significant bad assery-even for a person of 52. 

Pffftttttttt.