Thursday, August 17, 2017

Somebody said something nice about me today. I mean like, REALLY nice. I was so...



I dunno. Stunned? 

It's a funny funny funny thing. Because I have been toying about whether or not I should start making a list of the jerky shit that gets spewed. I don't think I've actually had it all that bad considering, but I thought, okay maybe I should start keeping track of what not to say to someone you know like, from other people. Start making a list. 

And I was e-ing with my cousin and she thought it'd be a cool idea if there was some sort of class-here, lemee go get it. It's really good. 

Maybe we all need to take a class on how to approach people after trauma.



I thought that was extra smart. Right? 


I have a person in my universe who-every time she sees me and it's a few times a week- she says something like: You know, it looks like you're really starting to take care of yourself. 

And I'm all like, uhhhhwhut? 

What (the f) is THAT supposed to mean? You mean like when I had to drag my sorry ass to work before I was ready because I had to pay my mortgage, you found me visually unappealing?

Uh huh.


Anyway, wow. Today someone else who's been privy to all the ins and outs of this saga-and haven't there been enough of those already, right?-said something incredible charming and all day, I felt like I ate a sparkler. 

People need more of that, don't they? Let's put that on our lists of Things To Do. 

----

I went to Oncology Essential Oils 102 Tuesday night. I almost texted my cancer pal because 6 power points in, we got the essential paradigm shift which is: People are starting to "live with" cancer rather than "die with" cancer. (And I believe that should be 'die from' no?)

And then she threw in a quote from a commercial about "The New Normal". 

Gaaaaaaah. 

You know what 'the new normal' is? Because I sure don't. I was strolling out of Whole Foods the other day with my overpriced little container of guacamole, using my $5 gift certificate we got at Veggie Fest feelin' all fantastic and I sneezed and it was like somebody kicked me from behind. 

When I laugh really hard-and thank goodness I do-I have to do an entire double handed ab protection maneuver so I don't end up with my organs in a puddle on the floor. 

Lately, I feel like a sideways accordion. 

New normal, my ass. 



It says: Life isn't about waiting for the storm to pass. 
It's about learning to dance in the rain.


I did send my friend my snapshot of the final powerpoint slide. And she said: Ugh. Spoken like a true person who never had cancer. 

And then we discussed the purpose of the gigantic-ness of the little girls shoes and lol-ed all the way home. 

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Thursday, August 10, 2017

Hope is red and it sparkles. Who knew. 


I could see my car when I left our courtyard and more specifically, I could see the bright orange parking ticket tucked under my windshield wiper. This was Tuesday and I was on my way to see the Primary Care's partner about that crazy Saturday pain. A parking ticket. Huh.

This week I read a children's book about what to do about a problem and I took the books advice. Hit it head on. Oh-kay.  


I got wooshed into the doctors office. I hate to be the one to point this out, but in terms of doctor's office art, this one was ugly. 






So here, I utilized the maneuver SOMEBODY told me about and this one's called: if you need to make an important doctors appointment, don't go through the hospital switchboard. Call the doctor's actual office, push the button that permits you to speak to the nurse, leave a message and they do get right back to you and they do hop right on top of it. Seriously cool and I would never abuse that and I hope none of us ever has to use that again but there it is.

Lots of questions, lots of poking, lots of possibilities. It came down to a question of Miralax or an infection in the top laparoscopic incision. He told me to get some Miralax-I was thinkin' what-are ya' kiddin' me? I had colon cancer. I have an industrial sized bottle left over from that little adventure. 

And call the surgeon. 

Off I went to the Dept. of Parking. The strangest thing happened where I took a number and sat down to wait? (I was the only one there waiting.) THREE DIFFERENT WOMEN were simultaneously rendered incapable of seeing me. Honestly and seriously I wish I had it on film. It was an amazing thing. 

Finally, after a very long while, one of them drew the short straw and up to the counter I went. I showed her my ticket. She wasn't able to find me in the system. There was a mix-up with my city sticker. She had to get the next level up person who came around and I just can't find the words to describe how unhelpful and ridiculous the situation became. 


We don't play these games at the library. I can't speak for anyone else but as far as I'm concerned, we're given the tools to solve the problem. And we do. 



Anyway, where I knew my Primary Care had filled out the form and faxed it-she said she didn't receive it. Hmm that's mysterious. I have the receipt from the fax. And then she said I was missing The Letter. The letter? Oh yeah, I was supposed to supply a letter describing my disability and at this point, she adds in that it has to be Written by the Surgeon. And for some reason she adds on that I have to now go to the Oak Park Township and apply for a temporary hang tag. Oh and PS, she's giving me till Monday to get all of this completed because what I really need to be doing at this point is racing around, right? 

I spoke to the surgeon AND his lovely secretary. He said the mystery Saturday pain is too far out from the surgery unless there's fever or vomiting or other wound-type drama, the only thing to do is watch it and hope the pain never returns. I said that part. Not him. His secretary said I could fax her these forms and she'd take came of them.

The next day, I tried faxing and of course(!) nothing went through so I called the secretary and asked if it was okay if I just came over and showed her what I needed. 

You see all these superfluous hurdles I had to hop in order for me to be able to walk less and recover from the surgery. Is this making one bit of sense to you? 

The secretary was charming. I got to go into a whole new section of the hospital complex which was weird and cool. I got the one paper I was permitted to take with me(this others had to be faxed from the doctors office) and I ran to the Oak Park Township and that is when-after all this crap-I was met with a glimmer of hope. 

Because I tell you what. This was really getting me down. 

I handed in my form and about 10 seconds later-with no judgment and not one iota of nonsense that they seem ever so good at delivering at City Hall(oh and when this ever gets cleared up I am going to raise Holy Hell about my treatment), I was handed a temporary hangtag. Oh cool, I said. My favorite color. 


Well, here's the thing. I don't really want one of these things. I don't know why this woman made me go get it-I sure didn't ask for it but today, just for fun, I gave it a whirl.





And here's why any of it made a difference to me. This surgery? I didn't puke for days. I was eating exceptionally healthy stuff and getting some nice exercise so I healed up fast. But still, every day I feel exhausted around 3:00. And at the very same time, I feel like I have all these nice hours with which to get important life things done? And I'm just way off my game in terms of motion. And this red tag felt like, finally finally, finally, someone really understands. And maybe that somebody is me. 







Sunday, August 6, 2017

The Pain Thing



When you go to bed with a wet head. 

I had been doing pretty astonishingly well, I thought. I am watching the scar go down amazingly fast (the surgeon said I was easily a week ahead in terms of healing) as I take photos of it to send to my cousin. Scars don't scare her. 

Then I ate this giant bowl of soup that a normal person probably could have gone swimming in(it was so good) after having eaten a giant bowl of pasta salad earlier in the day and I got this pain that slammed me to the mattress. What is it on the pain scale? asked P. 

ten.

I've never heard you say that before. 



------

I put heat on it and took a hot shower and did some massaging and took some over-the- counter pain things and pulled my shit together because I had to be at work. 

This book crossed my path. 

When a clown was a clown. 

Uh-huh. 
---------

People post their migraine forecasts on Facebook all the time. Does it make you feel better-I wonder. Or is it like a warning? Don't expect too much outta me today. For me, I don't want anyone saying,"I'm sorry." because my head fills in with something like, "you're such a loser/whining-complainer/other people have it way worse/shut up already." I want something more like: Rage, rage against the dying of the light but that's really quite a lot to ask-ha!-and I don't think my light is actually dying at the speed that's worth mentioning at this time, so I say nothing-with one exception. 

I e a friend. 



Good grief, she says. How is it today? 

That and a hot pre-sleep shower and the afterglow of taking two blue sleeping aspirins make me feel better.

Party on Garth. Party on Wayne. 

---------

This is a nice article. Oui?








Wednesday, August 2, 2017

You know what I forgot about? Fatigue. 

I was driving home from the Oncology Aromatherapy class last night and thinkin': Hey look at me. Out late on a school night.

Around 3:00 this afternoon? Pow. 

---------

I saw a picture of myself shot from above. This is P's new thing. Shooting out the window as I leave for work. I looked like a human crescent roll-so weak looking and my hair was the color of butterscotch. 




Yesterday afternoon, I went back to the scene of my last hairtastrophy and and had some slices of lightest brown tossed into the mix. 

It's a little ridiculous color-wise but what I never wanted to look like was everybody else. 

I also signed up for a learn to row demo class eventho it seems to be pitched towards those breast cancer girls who get everything. They do, they do, they absolutely do. 


Lost: One Groove. Reward if found. 

--------

I lost my marbles when I got home last night. It was after having been at this class to learn aromatherapy treatments-I guess-for people with cancer. 

I have huge interest in this because places I have worked massaging sell aromatherapy as an add on and I just don't know enough about it to trust that it's safe. This class didn't end up addressing cancer treatments yet. This was the part one and it was all about safety and how different oils are identified and the feeling of ants regarding peppermint and things like that. 

She had a couple of stories about how she was seeing big improvements in her patients with peripheral neuropathy and I thought hey cool. One of my first cancer massage clients-a long time ago-wanted me to go into her feet with my hands and demolish the shit out of them so as to encourage healing. 

I don't hurt people. That's not my thing.  

Then there was a slide about another oil that was supposed to shrink tumors. And the woman said,"I mean, why not, right? What have you got to lose?"

Ummm what?

And then later later later I got to thinking about these classes I've sat in on at this cancer wellness place and were they not all quite possibly sales pitches for something? Selling hope to the hopeless? Maybe? 

(Maybe I should have a class called :This is All Bullshit. Go Out And Look At The Sky. )

I got home, opened my email and was treated to a photo of the newly bald Kathy Griffin. She's shaved her head in solidarity with one of her cancered siblings. 

What a load of crap. Honestly, some of this cancer stuff f-ing floors me. 

---------

Yesterday. Doctors Appt. 9:15. 


The list


First of all, you should know that I love this guy. My Mother also suffered from Doctor Love. (She also had White Coat Syndrome. I do not.) I cannot explain it but this guy? We do the handshake thang and I already feel better. Go figya. 

I have my laundry list. You ready? I ask. 
Let's go. 

1. Do I have cancer? 

You should have seen his face. He was like, uhhhWhAt? But no-we were all business. And I said, yeah I know everyone has cancer cells and all, but am I done for now? Are you still being treated for anything he asked? Nope, said me. 

The answer is no.

Crossed that out.

2. Can you interpret the findings of the cat scan? 

Okay he says, big deep breath. The problem is that everyone is getting too much information and they don't know what to do with it. See that painting behind me? If I asked you to describe it, you'd say it's a yellow house. But if I asked a radiologist to describe it, they'd say, in the upper left hand corner there's blue sky and then there's a white cloud and then theres...and on and on. 

The important part of the catscan report was one paragraph and he seemed to think that it didn't-uhh uhhh uhhh/what's the word-diagnose cirrhosis. 

So he says, it would be a good idea to see a specialist. 

3. Referral to liver doctor. 
We talked about the different doctors and their personalities. They're all very good but this one is very academic. And this one doesn't like a lot of questions and this one is a goofball. 

Stop, I said. That's the one for me. 


Please never shove one of these into my orifcies. 

4. The hematologist situation. 
Do I switch now? Or wait? Or what? And he said, it depends on how you feel about the interaction. And I said, I don't care. I just want the information. He said, people switch doctors all the time. 

He gave me names of other hematologists and one of them is starred as well. 


This is blurry but doesn't it look like a surfer? It's his drawing of my liver 
and the blocked portal vein and the other little veins that grew in to replace it.
Newsflash: Your body? Wants to live. 



5. Parking Form. 

The GREATEST TRAGEDY of this surgery is that I lost my parking space. In the mix up of surgery dates and paperwork and everything? I set the payment envelope aside and forgot about it and like in an instant-I'm not kidding-somebody took the spot that I've had and been paying for-for probably like over 10 years. 

No-one to blame but myself. Oh and the horrendous and unfair parking system of my town. Them too. 


6-7. Back to work forms. 

8. Rowing. Can I? I have to ask the surgeon. 

9. Iron yes. Avoid tylenol

10. Beach-he said it's not the water that's a problem, it's what in the water. Hold off for now. 

The appointment lasted 45 minutes and I felt so much better.

-----
3:15 was the Ultrasound with a bagel chaser because the artist who did the Einsteins Bagel art taught at my school. I was supposed to have to wait because they were running late but 5 minutes later I was on the table. Nice tech. Let me watch the screen and ask questions. Done.


-----

Not sure what time, phone rang. It was the hematologist with the results of the test. The blood clot is what they call 'chronic' and what that means is that it didn't get bigger but it didn't go away. Stay on the same meds. Okay said me. Thank you. Goodbye. 






Monday, July 31, 2017

Bells are Ringing

I couldn't find my shoe this morning. Do you know I was back at work only 20 days after having been sliced open? That's pretty impressive, no? 
----------

On Sunday afternoon, I e-mailed my Primary Care. I wanted to give him some heads up about why I was going for this appointment and the appointments are only set for 15 minutes, so you cannot waste time. I also purposely waited till I was in the calmest state known to man. I'm not trying to fight here. I'm trying to live a little bit longer. 

This is what I wrote:

Hey Dr. (PRIMARY CARE)-
I have an appointment with you on Tuesday, Aug 1st at 9:15. If it's not too annoying to ask, could you look over the results of my June 6th cat scan? I saw The HEMATOLOGIST  on Friday thinking she had called me in to discuss it(I mean the cirrhosis and the cholecystitis is seriously alarming to me)but she had not. I'll need a referral to what she called 'a liver doctor' and I'd like to discuss seeing a different hematologist as well. 
Hope this finds you swell.
Thanks.

-Ann Farrell


Went back to work this morning. Oh Emmm Geee I was so happy to see my pals and all the demanding ("I think YOU need glasses", the patron said. Heh.) people were fantastic and just the entire swirl. Pure Joy. 

Got home, needed a bit of a recline. My rectus abdominis seems to enjoy a little pain at the moment-nothing brutal-many people suffer more every moment of every day. 

My email flashed with a new message from Loyola. It was from my Primary Care. (Is this cool to reproduce someone else email? If it's not I'll take it down.)


Hi,

We can definitely discuss all of that tomorrow. Based on the report from the CT scan, seeing a liver doctor (hepatologist) does seem like a good idea. The imaging is only suggesting a diagnosis, not definitive in the way they worded it, but it does warrant a specialist's input. We can talk more tomorrow, and we'll figure out the next steps. We can talk about other hematologists, as well.

If you have any questions or concerns, please feel free to send me a message via myLoyola or call my office any time.


Thanks for being my eternal groupie,
Your Primary Care


(Okay I made that last thing up. Low on jocularity lately, no?) 

So okay. I am breathing again, right? So I'm just sorta crashed on my bed and the phone rings and it's Loyola and guess who it is? The Hematologist. And for some reason I didn't get up. And I wish that I had, but I didn't. So this whole thing took place with me flat on my back. And that is not a good sparring position. 

So it's her and she's calling to see if anyone has called me about scheduling the Ultrasound. Remember, she ordered that last thing on Friday and here it is 4:30 on Monday and She's Just Checking.(uh huh) And the answer is no. And as our elementary school custodian Ralph Benning used to say-tell you the God honest truth-I wasn't thinking about it. 

She goes on to ask if I've been able to make an appointment with my Primary Care. I say, yes on Tuesday morning. And did I want her to go ahead and followup with the Ultrasound order because she sees in my email that I have requested a new hematologist. 

P was incensed. What that meant was, she had gone into my records and read my Sunday email to the Primary Care. He feels like that was a wrong thing to do. To read my email and call me and not mention that she'd read it until the conversation is almost done. 

Two things I have learned about the emailing your doctor thing. 1. There is NO guarantee that they're going to read it in a timely manner. They're doctors. They're doctoring. If it's something you need right away? Get on the phone. 

2. Anyone can read them. Lotsa times I'd drop a line to a doctor and hear back from a nurse. 

And thing 3 which is totally unrelated, I listened to another Dear Sugars episode yesterday and there  was some bit about having to Have The Conversation. And I HATE Having The Conversation. I seriously do. 

But even in my state of recline, I had the confrontation. I said, look, we seem to be having some kind of communication problem. We were left alone in the room for 35 minutes and you weren't prepared for the appointment. 

I didn't even know about the cat scan, she countered. 

(And I'll interject here from the perspective of a massage therapist? Before you come in? We're reading over your notes. That's the gig.)

Yeah well, you called me in. 
No I didn't.
Your nurse called and said you wanted to see me.
She said something. I can't quote her now because it wouldn't be accurate but I believe she felt as if that was not true. 

And I said, I want to talk to Dr. Primary Care about my hematology expectations because I don't think they're being met. 

So, did I want her to go ahead and call again about the Ultrasound. That's what I'm waiting for, said me. 

-----

Primary Care at 9:15. Ultrasound at 3:30. No food eight hours before. Woo.










Saturday, July 29, 2017

First a recipe. 


Baked Sweet Potatoes with Guacamole



Bake 4 skinny sweet potatoes in the oven. 40 minutes at 450. Or whatever. Crack open and slap a giant spoonful of store prepared guacamole upon the steaming orange flesh. Take a small spoonful of store-made mango salsa and decorate the top of the guac with that. Eat and rejoice. You're welcome. 


--------

Do you know how you're starting a new job and someone will say." It's not like this is brain surgery." which I have always taken to mean-something like: Nobody is going to live or die if they don't get their library book/relaxation massage/unsquished bananas/publishers clearing house envelope/yatayatayata. (Altho me without a library book is a very bad thing indeed.)

Well, doctors appointments are brain surgery. They have information and/or tests or treatments available that need to be delivered in a timely manner so as to possibly reduce some pain and hopefully extend your time on the planet. Or whatever. 

Are you with me on this?


I had a catscan pre-surgery. It's purpose was to give the surgeon more information. I got a strange sort of copy of the report-it was jammed sideways into a excel cube-so it was very long and hard to understand but there were a few unpleasant key phrases that jumped off the screen. 

You recall there was some trouble contacting the hematologist before the surgery. She was away. There was a sub who read my stuff and who's pre-surgical requirements for me were so extensive that I had to cancel the surgery. I didn't have enough time to make the required blood thinner transition and so the date got changed and all was well with one small exception. 

My hematologist wanted to see me.

And it was impossible because I was going to be in there in bed, so I put it off. We nearly ran away from the whole thing. Oh yes, we did. On these big, dumb, stupid surgeries, there's a point where you're not quite up for a day at work, but you could manage to look out the window of your car, so we've taken some little car journeys along the way. 

It is not ideal but it was something. 

But, this time, financial considerations being what they are, and having this impending information delivery crisis on the horizon, I decided knowing was better than not knowing and I made the appointment.

You maybe have noticed, that I go to a lot of these things on my own now. P has several commitments. My health bullshit is a drain on our relationship(<-- understatement). He provides drains too. Nothing is perfect but there are no weekends in New Orleans when you're dragging yourself down a hallway on a walker in Maywood and if it's not going to be some sort of news relating situation, there's no need for him and his legal pad to screw up his entire day in which he secures rubles which can be exchanged for guacamole. Generally speaking? I got this. 

For this one, I asked him to come. But no banter, I warned. For some reason, this physician and he would get into this hard-core jibber-jabber cross talk and it was really pissing me off. 

The appointment was for 3:30. He had additional obligations and asked me if I could make it later. The doctor had closed out all the remaining appointments so, one day they were there? And the next day-no. 






Got there at 3:20. Entered the room at 3:25. She didn't come in the room until 4:00 and when she did she said something like, How long have you been been in here? Like we decided to go camping or something. 

She had a medical student following her. 

So, she said, what are you here for? 





I'm sorry, what? said me. We got the message that you needed to see me. 





What? No. I was wondering why you were even on my list of people to see today. We're not scheduled till November. 


I look at the medical student. You wanna learn something here? I said. Don't do this to people. 


(Good! said my Dad when I told him.)

There's more words from her. She had not reviewed the cat scan. She looks it up and begins to read it. Oh no, she says. You have to talk to a liver doctor. 





P negotiated with her for a copy of the cat scan. I got out of her waste of time office like a bat out of hell because it was after 4:00 on a Friday and I needed to get on the phone to Loyola-from Loyola-because apparently I needed to see my primary care guy for a referral to a liver doctor. I initially took the Monday at 9:15 but P waved me in the direction of Tuesday. I have got to get back to work. 

We were pissed/shaken/rattled/rolled/folded/spindled/but not mutilated. 

We sat in the car with the doors open. What do ya wanna do? Ice cream? Hole in the Wall? No, Polar Bear. He had a strawberry sundae, I had a root beer float. We sat there. 

My phone rang. It was the hematologist. She said she had called radiology and that their findings were unclear and that she was ordering an ultrasound so they would know what the status of the blood clot is(and you could argue that if we hadn't experienced this ridiculous appointment-this information might have never come out-so there's good in it somewhere-if you look). If the blood thinners aren't working, I need to make a change. If it's not that? It's something else

One of the changes, and I'm going to talk about this with the Primary Care on Tuesday, is who's going to be the replacement for this hematologist and when. 


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Friday, July 28, 2017

I found my current hairlady from a massage client who used to manage a-not a Supercuts-the other one-Hair Cuttery. She was a manager there but not pulling enough dough(did you know most of these kind of service women are only making minimum wage and not EVEN getting any commission on product sales? To touch people's disgusting heads? It is an honor, a privilege AND a requirement to tip 20%. You don't have the 20%? Go someplace cheaper.) and I'm not sure how we got on my favorite topic in the universe(hair)but we did. 

Origin of favorite topic. It was the 70s? November 24th,1976.(You weren't born yet? Too bad.) I just looked it up. My sibling and I were upstairs cleaning our room. Ugh what a bummer but now I experience those same: You're not going anywhere today you're staying here and CLEANing moments in my own life and I understand. My Mom called us down. Come quick. Vidal Sassoon was on Phil Donahue. 

It was, quite frankly, mind expanding. Women who had kept their hair in a permanent bun-like women did in those days-who Sassoon exposed as getting mold in their hair from putting it up wet. Big funky cube shaped 'fros. Art and design on your head. Just incredible stuff for the time period. I wish you had been there. 

It's not actually the 'do that drives my interest. It's that one slice that makes you look as if your intelligence has been dramatically increased. There was an ad-when I studied that stuff. Cartoon of Frankenstein:"A bad haircut can make anyone look stupid."


I digress. 


I was talking to my massage client and my frustration was that this-not as cheap as Hair Cuttery but close-place I was going to, was costing me So Much Time. I mean, you expect that from a beauty school because people are learning how to hold all that stuff as well as a conversation, but I was getting stuck sitting there for hours. Like an entire Sunday morning. So not cool. 

I was getting bleach applied(I think they call it a Soap Cap? It's for resistant grey hair.) and then sitting and then something called Malibu and then sitting and then color and more sitting and that is not even the cut. 

So my massage client says, Malibu? Do you swim a lot? 

Umm nope. I leap around in the pool but not my head. Hmm she says. That's for taking the chlorine out of your hair. 

Hmmm, thinks me. Bad hmmmm. 

In the words of Judge Judy: Don't piss on my leg and tell me it's raining. 

I switched over to my client's hairlady. Strangely-it's even closer to my house than the last place. And that is coming from someone who would drive for a good haircutter. Far. Really far. 

----
She is Hispanic-probably late 40's and obsessed with looking younger. Not just her. EVERYBODY. 

She explained that her husband is younger than her and she fears he will leave her for a newer model. 

For me-good lawd have mercy-I have done so much learning in the Department of Self-acceptance. In a million years, I wouldn't ask to look younger. It's a stupid game that you will not ultimately win, right? 

Once, I visited an extremely handsome gay couple in the East Village for dinner. Their bathroom was ringed with a special shelf just for all their skin potions. So when you're 60, you're gonna look 55, huh? said me. I wasn't invited back. 

Heh. 

Here's another one I picked up from a hairman in Elmsville-the town of my yoot. He said, "You go to your class reunion and everybody looks old-except you." 


I have another doctors appointment this afternoon. It's with the blood lady. The hematologist. It's a little worrisome-ish based on her having looked at the new information from the pre-hernia cat scan and now, wanting to see me. 

Hmmm. This morning, looking old seems kind of even more okay as a goal. And getting old. That'd be even better.