Cancer Care in Miami

Feeling like Shattered Glass from David Arsham 

So, here's the thing. You're 77, you have cancer and you have Medicare. So what does the wonderful American Healthcare system offer you?

Early 2010 

Your daughter announces her alarm that you have lost 22 lbs.

October 2010 

You get a chest x-ray to have surgery that you end up not having on your hand, and the x-ray suggests problems in your right lung, hey, maybe emphysema or COPD. Because of course, emphysema is unilateral, as is COPD.

December 2011 

You take too much thyroid hormone by mistake and while in the ER, just for the sake of billing, your attending physician orders an x-ray that shows NODULES in your right long. Oooooh, bad. Your geriatrician could not possibly care less. Like really, weight loss, stuff in your lungs, who cares?!

February 2012 

You start with a brand new geriatrician in ta new system of care (UM), Dr. Roos, but oops, he's going to retire and btw, he thinks you should get out more and poo-poohs the difficulties of social interaction with celiac disease that requires a strict Gluten Free diet, and oh, by the way, so many social gatherings revolve around food and contamination is this whole big issue if you have celiac disease.

November 2012

Dr. Roos retires and  Dr. Xxxxxx takes over. He's not worried about those nodules because who knows what they are?!

Interim period of total exhaustion, more weight loss.

April 2015 

You have a big GI bleed not once but twice after not following your hematologist's advice and taking salicylates, in the form of Pepto Bismol, Bismuth Salicylate. Your hematocrit falls below 30. 

May 2015 

You see a GI doc who orders a CT virtual colonoscopy, but hey, you don't really complete the instructions and you have too much stool in the colon to get a clear picture. But, whoops, what the hell are those nodules in your lungs?

July 30 2015

After prodding the geriatrician, Dr. Xxxxxx, you get a PET scan which shows WOW do you have uptake in your lungs and colon. Only look at that, now you have uptake in both lungs and gee, what the hell is that primary in your colon. Oh, by the way, what's that sitting on top of your kidney and adrenal gland. Hmmm.

August 2015 

You elect no treatment, just state you want pain management.

October 2015 

Recheck, hey everything is PEACHY KEEN. You so healthy!

_______________________________________________

First Week of  December 2015 

You: "Oh MY GOD, the pain in my chest is driving me insane. I am so scared this is cancer pain, the one thing I was afraid of," 

Geriatrician Xxxxxx: "Why would you think you have CANCER?" 

Me: "Because of the fucking PET scan that showed she had metastatic cancer?!" Nice version: "Remember the PET scan that showed she probably had colon cancer with mets in her lungs? Remember that one?"

Geriatrician Xxxxxx: "What PET scan? Oh, that PET scan. Hmmmm. What's your dose of Tylenol?

Second Week of December 

Consultation with the Concierge Geriatrician. We sign on. It's only $6000/year. Referral to high-powered Oncologist!!!

Third Week of December 

Referral to the utterly wonderful oncologist. Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Dr. Xxxxxxx at The Miami Cancer Institute! Motto: Fight, fight, fight! Bill,  bill, bill! "We need to figure out if this is even cancer! You look healthy to me! What do you mean fatigue and loss of 20% body weight? So healthy!

December 27 2015 

MRI shows apple core lesion in the sigmoid colon and "suggests"* primary colon cancer with perinodal involvement. Just an FYI, that's a constriction of the colon that looks like this:

Kind of distinctive, no? Like, not too easy to fit things through there.

January 4 2016 

PET scan shows nothing in the colon but WHOA those lungs, OMG the thing growing into the pleura and all that hot fluid, ouchy, ouchy!

January 14, 2016

Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Super Wonderful Oncologist Dr. Xxxxx wants to talk to you about your PRIMARY LUNG CANCER.

Me: "Um, I'm sorry but what about that MRI that showed the Colon Cancer primary and perinodal involvement?"

SWO Dr.: "Whaaaa? I didn't see that? Was that from UM?"

Me: "No, that was the one you ordered that was done on  December 27th?"

SWO Dr.: "WTF? (paraphrase)"

Decides to get two biopsies, lung and colon, and oh, btw, hypochondriac mama says she has clotting problems, so Dr. Wonderful Oncologist says she has to get platelet studies before biopsies.

Wait. Wait. Wait. Call. Wait. Told Off By Scheduler.

Beginning of Third  Week of January 

"All you need to do is go to Outpatient Registration. No appointment is necessary."

January 28, 2016

Me: Drag very fragile Mom (You) to Outpatient Registration at South Miami Hospital. They recognize she is so week they tell her to remain seated and bring all documents to her.

Transportation to Lab.

Wait. Wait. Wait. Apologetic Phlebotomist appears to ask who scheduled this appointment and then tells you that the blood for these tests can only, ONLY be drawn between 7 am and 11 am M-F.

Everyone apologizes profusely, OMG how did this happen, poor, poor sick Mom.

January 29. 2016

Return following morning at 9 am. Pre-registered due to staff's incredible sympathy for how awful patient looked day before. Sits at main desk to sign, wheeled to lab.

Phlebotomist takes you right away. Sits you in draw seat. Turns to co-worker:

"Before I stick this lovely lady, I just want to be sure about the procedure to send all those platelet studies to UM."

"I don't know. Let's call Xxxxx, our Supervisoer, who is on lunch break at 9:20 am.

Speaker Phone: "Oh, you have to schedule those in advance with University of Miami Hematology, to make sure there is someone there to receive the specimens and do the testing right away.'

Off Speaker Phone: "FUCK ME WE CANNOT ASK THIS POOR LADY TO COME BACK A THIRD TIME!"

Me.: Like REALLY.

You: groan and slump further in chair, in utter exhaustion.

"We are going to work this out. Could you sit right here with your Mom?"

Me: Looks at watch that says 9:45 am.

Door closes. FRENZY behind closed door.

10:05 AM: "Our supervisor got UM to agree to take the sample if it's there by Noon."

Interlude

Complaint to sister of friend who just happens to be VP of Miami Cancer Institute. Cue many phone calls, apologies, "Oh, things like this should never happen and will never happen again!"

Blood drawn, and you know after all this saga and all the complaining done about various parties that the tests are totally NORMAL.

Last Week of January:

GI Specialist says at pre-op appointment he will have to do sigmoidoscopy to get biopsy because lesion described by MRI is too tight for a colonoscope. Wheee! Easier prep!

February 4 2016

Sigmoidoscopy. Wait. Wait. Wait.

We Interrupt this procedure for announcement that friend of 28 years has committed suicide and left you in charge of finding home for her three cats and btw, she also had fish, which are now also yours.

Wait. Wait. Start to freak out.

GI Doc comes out to tell you that he was up and down that sigmoid colon and found no apple core lesion, no lesion period and not even bleeding or polyps and has the 97 photographs to prove it. Went all the way to the splenic juncture but NOTHING.

"That lesion?  It isn't there. I couldn't find it. If she has mets, it isn't from her sigmoid colon!"

Once again, it's not like you'd miss this because hello, hard to get past it without noticing:

Aside: My. Friend. Committed. Suicide. Second friend who was in Menninger Clinic in Topeka as a teen in the 1970's who has committed suicide.

February 11 2016 

Fill out boat-load of online medical history and medication issues that is promptly ignored later. Appointment with Dr. Xxxxxx, the Miracle Oncologist. "Dr. Xxxxxxxxxxx is great. He will stick needles in your chest!!!! We will figure this out!!!

Dad and Stepmom visit, Dad goes to talk to Mom. "It's a bird! It's a plane! It must be lymphoma! Most common cancer in Celiac Patients!!!! Let's tell her, because that's so awesome easy to treat!"

February 18 2016

Thoracentesis. "Ooops, didn't we tell you about all the fluid in your thoracic cavity?" Only 700 mL. No biggie." CT-guided lung biopsy.

Dr. Xxxxxxxxxx says "I really can't say it's lymphoma. We need cytology and pathology. She's probably going to need to be drained again. BTW, about that pneumothorax, she might need to be admitted overnight until it resolves.

Gluten free meal delivered for patient who hasn't eaten in 16 hours. Oopsie WHAT IS ALL THIS GLUTEN?

"What gluten?"

"The whole wheat roll and mashed potatoes with gravy?"

"OOPSIE. You meant gluten free without gluten?"

Dr. Xxxxxxxxxx: "Okay, she can go home if she goes home with you and you keep an eye on her, even if she's asleep, to make sure she doesn't have her lung totally collapse."

Me to You: YOU ARE STAYING IN MY HOUSE. I CANNOT STAY IN THE 80+ F HOARDER HOUSE WITH FLEAS OVERNIGHT WITH YOU.

You: Ugh! I can't stay in the hospital overnight, so okay.

February 22 2016

Dr. Xxxxxx, Miracle Oncologist: "It's a bird, it's a plane! It's metastatic cancer in your lungs and it probably comes from your colon! (Runaway, runaway!) We need to do exploratory endoscopy to proceed! We will call you!"

February 26 2016

Fill out boat-load of online medical history and medication issues that is promptly ignored later.

Dr. Xxxxxx: "Did they call you? We were wrong! We don't know what is! It's a bird, it's a plane, it's probably just lung cancer, unless it's not and then I don't know!"

Me: "WHAT DO YOU MEAN?"

Dr. Xxxxxx: "Well, immunohistologenetics shows that they don't know FUCK about this cancer! (accurate paraphrase) So here's my plan: 1) Chemo and radiation, except you said you don't want that; 2) Radiation, except you don't want that and we don't know where the fuck to put it! (another accurate paraphrase); 3) do nothing and just have pain management.

You: "I might want to start some pain management. This really hurts!!!! Tylenol doesn't cut it!"

Dr. Xxxxxxxx: "Here, try this pain Rx for a patch that has this opioid. BTW,  we could do this blood test to see if your EGFRs are susceptible to treatment with this specific drug that might work for your cancer if what I think you have is what you have except I don't know what you have but maybe you have this rare thing because you look WONDERFULLY HEALTHY. Maybe I should have thought of this earlier."

Wait 45 minutes for blood stick and Rx script.

Take Rx script to Marco Drugs with badass clinical pharmacists who pay attention and have software that actually works.

"We cannot fill this! She's allergic to another opiate in this exact same drug class! It could make her have anaphylaxis! You need to call her doc back ASAP! It says RIGHT ON THIS PRESCRIPTION that she is allergic to Demerol! WTF! (paraphrase)"

Consult by text message and phone call with Clinical Pharmacist Daughter Who Graduated from Second Best Pharmacy Program in USA, and who is currently in Residency for Critical Care:

C: "I wouldn't give it to her. WTF is wrong with their software that it even let them generate that script!?!?!?!" Seriously? It really says she's allergic to Demerol right on the script? Like, I can't believe that. REALLY? OMG!!! WTF!!!!!!??????" (Paraphrase, but literally)

PA from Dr. Wonderful Oncologist's Office: "So since she can't take the Fentanyl patch and doesn't like oral pain meds, we thought Naproxen Sodium was a great plan."

Me: "Aleve? Really?"

PA: "Well, no, we want her taking the 250 mg pill instead of the 220 mg pill! Her insurance might cover it!"

Me: "So you want her taking an anti-inflammatory for her cancer pain?"

PA: "Yes! It should work if she takes it every 12 hours and doesn't care about her stomach, small intestine or kidneys anymore!!!! (paraphrase)"



Saturday, February 27 2016 

You: "I don't know what kind of cancer I have and whether I should try to treat it or if it's a waste of time and effort and feeling sick versus feeling totally horrible from treatment. By the way, this Aleve+ they prescribed isn't working. I don't know what to do anymore. Every week they tell me something different- colon cancer, lung cancer, colon cancer, lung cancer..."

Me: "I have nothing. LIKE, NOTHING AT ALL. I don't know what to tell you, Mom. I support whatever you want to do, because the only thing I can say is that it expresses cytokeratin 7 and isn't Non-Hodgkin's Lymphoma."

You: "And this is what happens when you can pay for healthcare?"

Me: "Yep. Best healthcare in the world, Mom!"

________________________________________________________

* "Suggests" is a great way to avoid legal liability for being wrong or being right but about the wrong place or the wrong presentation or whatever the f*** is not right there.


© Bright Nepenthe, 2016

Your 2nd Amendment Rights and My 9th Amendment Right Not to Get Shot Because of Your Idiocy

"A well regulated militia being necessary to the security of a free state, the right of the people to keep and bear arms shall not be infringed." - Second Amendment of the US Constitution, 1791

As any of my international readers will have noted, we kind of have a gun debate going on here in the USA. By "kind of" I mean that a lot of people, including children people, are getting shot here on a daily basis and some whiny people think it's a problem. By a lot of people getting shot, I mean that this is the 300th day of the year and according to Gun Violence Archive there have been 280 mass shootings in the 300 days of 2015, and as of this morning, 10,834 deaths, and 22,025 injuries. 

That little anti-Republican conspiracy magazine known as Mother Jones keeps having incredibly subversive articles on the subject. Like the one that pointed out more Americans have died in the past 25 years than have died in all wars (combined) that the US has fought in since 1776. Then there's that liberal-fomenting bastion, Harvard, which keeps providing them with their extremely biased images like this one:

We even have unhelpful articles like Christopher Ingraham's recent Wonkblog post on WashPo, about toddlers getting a hold of their parents' or grandparents' guns and shooting themselves or their people, like that's a problem and not just natural selection. All this talk about gun locks and smart guns and proper storage and too many carry permits makes my head ache. I mean, look a the stuff Wonkblog is making us look at:

Anyway, as a lot of you know, I've got health issues. I've spent no small amount of time in doctor's offices what with my, and my mom's, health. Maybe that's why this little gem caught my eye yesterday. From the Beaumont NBC affiliate:

"A witness told KCEN's sister station 12News that a woman was in the waiting room of a medical office. When she reached into her purse to pull out some paperwork, a gun fell out of her purse causing it to discharge. The round went through a wall and hit another patient in the hip."

Well, it turns out that it was all fine and hunky-dory and that the other patient was only shot a bit and could be discharged right away after treatment at a local hospital. I would have to be just plain dumb to be unsettled at the idea of people getting shot accidentally in a doctor's office or outpatient clinic. Admittedly, I always thought my doctor's office would be a safe place to have to sit and hang out, waiting endlessly to be seen. I mean, way safer than a movie theater or a university or a Wal-Mart or a post office or a fast food restaurant. Because, you know, doctors heal and all. But it turns out that going to the doctor isn't just potentially dangerous to your wallet, at least in Texas. It can be dangerous to your person. Because some idiot got a concealed weapon permit from a place that evidently forgot to test whether the person knew how to put the safety on their fecking gun.

I keep looking at that second amendment and wondering what is "well regulated" about militias (which we don't really have) and guns in the USA? Is one amendment more important than another? Because, personally, I would like to invoke my unenumerated Ninth Amendment right not to be shot because of someone exercising their purported Second Amendment right to bear their stupid firearm they don't know how to use safely. I think the Ninth Amendment means they can't take away my right not to be shot by idiots, doesn't it? I mean, the founders didn't spell it out, but they clearly foresaw the need that there might be some rights that shouldn't be infringed on, that weren't enumerated. I'm calling this one my unenumerated right not to be shot. (Yes, I know Scalia et al will say this is a complete misinterpretation of what the Ninth is about, by the way.) Speaking of my right not to be shot, that cute little thing called the Declaration of Independence,* which was drafted back in 1776, has some examples of unalienable rights that speak to me. Life (definitely not shot), liberty (freedom from being shot) and the pursuit of happiness (so much easier to be happy when you're not worried about being shot) were envisioned by our founders. What the hell happened?

*Incidental irony- Independence from one of the countries with the lowest rate of gun homicide in the world, and one with a complete ban of handguns, etc. If you want to get really jazzed about firearm related deaths in the US, take a gander at Humanosphere's take, which is sooo 2013. Here's a closing shot of nice and shiny "facts have a liberal bias" graphic:

© Bright Nepenthe, 2015

The Things That Keep Me Up At Night...

The Sleep of Reason Produces Monsters

Los Caprichos, No. 43

Francisco Goya

I come from a family of people who struggle with sleep. One of my cousins once had a period of time where he slept only about an hour a day. I neither fall asleep easily, nor do I stay asleep easily. But sometimes I think it's more to do with some generalized anxiety thing than just some neurological weirdness. I've ardently resisted having a sleep study done, since the idea of falling asleep with electrodes all over my head and body, in a bed not my own, is just unpalatable, not least because of my back and neck problems. 

The stuff that keeps me up at night, these days, feels almost like I'm suffocating. There is of course, the biggest issue of all, that of my Mom, worrying about her, as I see her growing ever frailer by the week. She gets annoyed if I hover (defined as too many welfare checks and not enough appreciation for Fox News and the GOP) and annoyed/sad/lonely if I don't hover. I worry about her being in pain and not trusting that I'll keep her at home with nursing services if she tells me. I worry she is having more GI bleeding than she's willing to admit to, since she looks so pale. I worry she still insists on driving to her daily acupuncture appointment, though I've suggested getting her a driver. Today, we had a huge fight about her wanting to give a potted ground orchid to her beloved acupuncturist. That would be the same acupuncturist that told me she mustn't lift anything heavy because of the risk of hemorrhaging. And you know, I'm thinking fifty pounds of heavy Chinese-style glazed pot and rain-wet potting soil was probably the kind of thing her acupuncturist was thinking was heavy for a 5' 1" tall, 118 lb woman who's had a number of GI bleeds in recent months.  After a bitter discussion in which she tried every diversion tactic and misdirection ("Do I hear that you don't like my getting my primary treatment from an acupuncturist?" "No, Mom, you hear that I don't like it that you're ignoring her very sensible and clearly stated to you advice!" "I'm not lifting it. I'm going to roll it to the car and push it up an 8 foot long ramp to get it in the back of the car!" "All of which still uses ab muscles, last I heard. How about my husband I lift it together and carry it a good 15 feet to a car parked outside that gate and then take it to her house so she doesn't have to lift it either?" "Why do you have to try to micromanage me?!" Because I'm following your Chinese doctor's advice you wanted me to follow, remember?") we agreed that tomorrow she would ask her acupuncturist when she could bring it to her for her birthday. Of course, I went behind her back and talked to the acupuncturist in person, in her office, about my husband and I bringing the plant to her. I am sure now, after it's gotten thoroughly soaked in the rain, that she'll try to roll it to her car and take it tomorrow morning, because... that's just how oppositional she is. Let's hope she doesn't get any bleeds. My mom... Oy. She's the kind of person who worries that when she dies that someone will take the decades old appliances out of the house when she's gone, in spite of my pointing out anyone buying the house will likely gut it in order to make all those new-fangled updates people like in houses these days and that it might be more salient to think about who will take her kitties. Things I worry about are the placement for her three shy indoor cats, and her two outdoor kitties. (I already have 7 cats and her cats cannot join us. I already have one refugee from her household.) These are all reasonable things to worry about. Aren't they?

But... there's more. Of course, there's more.

My husband and I are headed toward retirement. We want to leave Florida, and there is another worry. Having become a professional guardian, I wonder what will happen to my wards when they transition to successor guardianship. And I struggle with what to do about one of my GAL kids, who plainly needs a guardianship, in about 15 months time. She is an incredibly behaviorally disturbed, low cognitive functioning youth who has almost been trafficked and who is prone to aggressive outbursts. Like, I'm sure if she does what she does now, at 18, I'll be explaining to a Criminal Court judge that she is incapacitated and doesn't bear responsibility for assaulting her school teachers and showing the judge my letters of guardianship. If my husband retires in 5 years, that will mean a scant 3-4 years of guardianship to get her circumstances in order well enough, and to find a successor guardian or guardian entity. And therein lies yet another problem. Our public guardian provider does not take these cases anymore. Who will take care of these still young, lifelong, low functioning, high needs wards? These disabled adult children, as the Social Security Administration calls them. I have known this soon to be 17 year old child since 2008. How can I turn my back on her, given her history? Do I give it a good 3-4 years and then hope I can find a new and caring professional guardian for her, as well?

These are the things that keep me up at night. Trying to sleep shouldn't breed monsters.

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© Bright Nepenthe, 2015

Women Vote GOP. Yes, We Do. #IStandWithPP

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© Bright Nepenthe, 2015

Boundaries and Balance

Artist Unknown but boy does it capture the feeling of a balanced heart...

So you know, in the last few months, I have had all kinds of challenge to my intention to do good and stay sane and unfatigued, compassion-wise.

There was the foster parent who told me that she was disappointed that I didn't get the foster youth placed with her and didn't try hard enough, when the youth and her placement agency wanted to place her elsewhere, and oh, by the way, I was trying to stay in touch while my terminally ill mother was getting her PET scan only she didn't because she didn't adhere to the instructions and I was trying to reschedule it. My bad for not picking up the phone. Yeah, that one really sticks in my craw. Personality disordered much?

There are the group or EFC (Extended Foster Care) home providers who seem to think I am a taxi service and that I'm failing in my transportation duties. (Let's just forget all commitments to other youth and to my own family, because, hey, let's just.)

There's the group home provider that won't even give you the courtesy of a hello or eye contact, because your GAL youth is a difficult youth. Hey, you're right. It's all my fault. I just love it when you won't reply to a text message or only call me to rant.

There is the judiciary, kind of forgetting they're talking in front of a person's 12, 15 and 16 year olds about how terrible their parent (who still has custody for 2 of 3) is and how long their criminal history (back before 1990) is. Kids just love to hear their parents called bad apples. Love. It.

There are all the bashing emails. The ones where you reply trying to point out all the good things the case manager did. The ones where the one thing that went wrong today is all everyone's fault, evidently. Every. One's.

There are the aged out teenage kids, who sometimes resemble leeches until you realize that you are the only one that picks up the phone call. That helps them move from one placement to another. The only one that will give them the money for the spontaneous GED test or the daycare they need for their child if they have any hope of getting that GED. And maybe they aren't leeches as much as desperate, because for sure they are not getting that from anyone else in the system.

There's the fact that I haven't had time to see my mom this week. Not since Sunday. Wow is that messed up.

How do we maintain the boundaries that keep people from draining us dry, and still have heart enough to truly care?

A tough one, this question.



© Bright Nepenthe, 2015

Palate Cleanser La Petite Comtesse Version

 

Un cadeau de La Petite Comtesse, la Fée Fuchsia, m'a envoyé hier. Qu'est-ce que une fille douce, non?

 

 

Source Unknown, but looks a lot like the Apple Dahlia. 

I'm really hoping that this next week is an improvement over the past week, which we just won't review, for the sake of sanity. Pretty flowers are a fine start. As was the 10 hour night's sleep.

 

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Between a Rock and a Hard Place

A Rock and a Hard Place, attribution unknown

This brief post is about what it's like to be a case manager. It is a pastiche of actual comments from some of the truly wonderful case managers I've known. And I've known more good ones than bad ones.


"I feel horrible. I'm taking care of everybody else's neglected children and feel like I'm neglecting my own children."

"One day I came home from work, like usual, after 8 pm, and my daughter asked me why she never saw me anymore, why I never went to any of her extracurriculars. I had to quit doing case management. I couldn't bear it."

"So I do all this work, get a master's degree, hardly sleep, really care about each and every child in my case load, spend my own money buying them things my agency won't, and then this judge, who thinks that parents can do no wrong and practically own those kids, sends them home to get beaten with a belt? I have to get out of here. Maybe I can go into medical social work or something. I just can't stand this anymore."

"I missed his first words, his first steps, his first morning at pre-K. I can't miss any more."

"You're on your own out there. Your supervisor won't raise a finger to help and will only tell you what you did wrong. Your administrator's door is always closed. I'm up there facing a judge and there's nobody that has my back."

"At my agency they have all these layers. I'm supposed to have someone else do all the referrals for me. But if they don't get made or services don't get started, it's my fault, and you can bet I'm going to get blamed for it. But, if I do them myself, then I'm accused of not following their structure, and of being inefficient with my time. I just can't win."

"Overwhelmed? I was overwhelmed last year. This year, I'm almost drowned. I don't know where I can go. This is the third agency I tried. This system is broken, and while I want to try to keep these kids safe, no one's really helping me do it. Some judges give them right back and others don't want to even give their parents a chance. Staffing after staffing of what I'm supposed to be doing that I haven't done yet for this case or that. No money to do it with, all these insurance snags or limitations, no way to do anything nice for these kids, foster parents that you don't like, and program managers talking about money, money, money. I don't want to quit caring about these kids, but I have to get out of here, or I will. I am almost too tired to care about myself."

"I feel so terrible about leaving her case, because she has such abandonment issues. But my whole unit was reassigned. I just don't know why they do this. I'm so sorry. If I give you my personal cell number, you could call me with her, when you visit. I don't want her to feel like I just disappeared and forgot about her, like her family did."

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A Little Shop of Horrors

from Wikimedia Commons

I title this post "A Little Shop of Horrors" in honor of a PET scan. Actually, a PET scan is a thing of surprising beauty, from a scientific and visual standpoint. It's only when it belongs to someone you know, care about or love, that you have a problem. But more on that later.

So here I am, writing again. It's like I drank some real Nepenthe and forgot this blog, right? Only not so much. It's partly that I had nothing positive to say, about the world, about child welfare, about so many things, that I thought, hey, fallow is good, fallow is fine. So now, by virtue of not posting for two years, it's like my own private diary, right?

You'll notice the delphinium flowers above. (Don't you have problems with delphinum/delphinia?) They're to honor my Mom, the lady that can grow officially Zone 8a plants in Zone 10b. That's my Mom. Growing things. Hey, she even grew me, though, for a while there, she sure didn't water me much. That long stretch between 13 and 24? Yeah, that was no man's land. DNRs were signed, grandparents died, muggings, breakups, rape, yeah, there was bad shit during that time. But in the end she showed up. She's been around on quarter time or so, since. But the early years, in between trying to commit suicide when I was 3 and when I was 13, those are the golden years. The books! The music! The theater! Oh, the enrichment of those years! They were the truly formative ones for me. So much of who I am, especially intellectually, owes to those years, in spite of the fact that pretty much everyone says I am my father's child, rather than hers.

So on Monday, I'm going to be 54, and the following Tuesday, Mom will be a frail 77. I have contemplated our age difference a lot recently, thinking about how unformed I was at 23, how wounded at 24, and then reflecting on how my Mom had me, at barely 23. I was, to say the least, a challenging child. I can't imagine. Especially, I can't imagine my Mom and my Dad and how they ever managed the quantum entanglement that resulted in a hurtful marriage and me. I can kind of understand, knowing both of them, what led my mom afoul when I was 3 (hey, long before post-partum depression was understood, and regular depression is still such a taboo... A failure of will, what a lack of discipline, pull yourself up by your bootstraps and just get on with it, no matter how many times you get knocked down!) and how my parents circled one another like a they were like bowling balls, or twin stars, on a gravitational track into a black hole. Swish, swish as they swirl around each other, both to be extinguished, crushed and then, the quanta exit to form new worlds.

Wow, that got side-tracked... So anyway, after years of diffident and sometimes hostile-avoidant interaction, here I am worried about my Mom. The same Mom I overtly blamed, in a sadly seen by her diary, at age 16, for the ruination of my "family" (not that it had been all that awesome, mind you) by her refusal to try anti-depressants, and for her lack of "participation" in my life. (Yeah, that thing about not showing up at all for anything in school still burns. Award ceremonies (senior year got 5, but friend's parents were the one's clapping for me). Parent Night (I was a guide, showing everyone's parents around but mine), College graduation (all she cared about was that Phi Beta Kappa pin but she didn't go to the ceremony, even for that...), So yeah, she watches Fox News now (incessantly and thinks Bill O'Reilly is awesome and that Bobby Jindal is soooo smart) and I watch BBC and Al Jazeera. Oil and water, my mom and me, the mostly my father's active, go-getter child, on a social justice crusade because, hey, ya gotta do more than fill your time gardening. (Oops, I do garden, come to think of it...) And yet, she influenced who I am, my intellectual curiosity, my interest in music, art, literature, more than my Dad ever did. My dad was never around much and then he left. Such common wounds, these. Yet bridged, or bandaged, by urgency, by foreseeing a future with so little time.

About 5 years ago, my mom lost 30 pounds. It seemed gradual, but one day, as leaving after a visit, I hugged her and I realized that there was just too little of her to be right. Enter the aggressive pursuit of fixing my Mom. After a 1.5 hour wait and total indifference from her then GP, I ditched him on her behalf and after asking the Provost of UM (connections, man!) for a recommendation, got to an autoimmunologist (old school) and a really good geriatrician. Aggressive pursuit of reasons for weight loss and a slew of other things (platelet aggregation disorder? Hematologist! Refractory celiac? Diverticulosis? diverticulitis? GI! Nodules in the lungs? Pulmonologist!) led eventually, five years later, to now. Ah. Let me talk about now.

At the last geriatrician appointment, my frail mom, who used to be 5' 4.5" was measured as barely 5' 1" ("Stand up straight, dear!" said the kind nurse with the Caribbean accent) and 119 lbs, up from 118 lbs (and way up from 107 lbs!), but I know it's only because she didn't take her sweater off. This was the appointment where we found out that the cancer in her lungs maybe probably came from elsewhere only we spoke in code because the language my mom speaks is "Don't touch me, I'm tired and I am tired especially of all this." Later, I read the PET scan report and found out that what we had been told was primary lung cancer and early stage 4 was actually primary colon cancer and waaaay stage 4. Like lungs, adrenal glands and colon. Oh, my! Three colonoscopies over the past three fifteen years, capped by a virtual colonoscopy in May of this year, and none of them showed... the clearly visible on PET scan massive lesion with more than half the maximum uptake of the radionuclide-tagged glucose (8.1 on a maximum scale of 15)!

Today, I saw the actual scan, with a good friend of my mom's who is her acupuncturist and a modest practitioner of Chinese Medicine. My mom, who naively but firmly stated to me that her friend had both seen the scan and understood how to read it, doesn't know that her friend Mary and I sat down and I basically interpreted a little shop of horrors for her. About the best I can say is that it hasn't made it to her brain. The lesion in her colon is so large that in comparison to her frail frame and narrow hips, it took my breath away. A lesion missed by so many exams, a lesion that will consume her.

In recent weeks we have made end of life preparations- Advanced Directives, Living Will, Designation of Healthcare Surrogate, Trusts. so much planning. Yet all I can remember of this, right now, is a narrow pelvis and a colon cancer the size of Texas, in my mind. I've had other friends who have battled cancer- some lost, many won, with all the modern techniques and treatments. But this is somehow different. Both the painfully accurate five years long conviction that something is really wrong with her, and heartrending reality that it's too late to do anything now that we finally, finally figured out what was wrong. And the unrelenting reality that she is being eaten alive from the inside out and there is nothing I can do, or anyone can do, now, to fix it. Did I mention how strained my Mom and I have been? Or that I would do anything to "fix" her? To buy her more time? To buy her no pain?

When we were working on the trust, the deed for her house will be tied to her trust, of course. I was so absorbed thinking of what will become not of the house, but of her garden, her life's work and the one thing that makes her happy. An ecosystem for cats, for birds, for squirrels, opossums, raccoons and at one time some sort of exotic fowl that I still can't confidently identify (cruelly killed by some predator, crushing my mom). No one will be able to maintain that garden, and as my husband says, with maybe too much gusto, no one is going to want that garden... Something inside me just quails at this. It was the one thing, in 54 years on this earth, that I knew made her happy. She, the one who grew camelias in Miami, delphinia, and so many other northern plants I love, the creator of magic, reader of stories with voices, the offerer of wonderful books, art, music, is dying. Somewhere, the intersection between PET scans and gardens spells disaster. I can drop a Google Maps pin and show you where. 

There is this garden. It's a slice of magic. And it's gonna die. Just like her.

It hurts.

It hurts so bad.

Garden as a metaphor for a person? Hey, why not.

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