Bifurcation

Nepenthe by Loui Jover

In recent years, I lost my love affair with blogging. I came back to this space occasionally, for moments of needed catharsis, often feeling that writing about my cares made me forget my cares. (Nepenthe, get it?) But with the current political climate making me once again feel that it is something like civic duty to speak out about science, facts, the state of country and its impact on our world, I feel as if Bright Nepenthe has become too personal a space to address issues of relevance in the the post-truth world. Truth and Facts and Science have become such controversial things. And so, I have started a new blog, ad capere scientiam in order to blog factually about important things like global warming, climate change, the environment, vaccines, race, gender, orientation and why gay conversion is the stupidest idea ever. Bright Nepenthe isn't going away. It's still a place where I will write from time to time about feeling and being. But I hope that you will join the discussion at the new blog, since it's a critical time in our country and in the world.

© Bright Nepenthe, 2016

Wreckage

Azalea, Rhododendron subsessile, Luzon, Philippines

It's been six weeks since my mother died. In that time I have dealt with enough BS, enough detritus from the termite-ridden hoarder house, enough estate financial mess, enough unresponsiveness from CPAs, argued enough with hospice people that they already took their equipment. I have had friends and loved ones tell me how they are going to help me instead of asking how they could help me, until I said "Enough already, how about you listen." I have listened patiently until I can bear no more as people helpfully tell me that I should think of how happy she would have been that Trump won and that evil Hillary lost and that it's a shame she didn't live long enough (in agonizing pain) to have seen it and then quietly said, "Enough already." I have caught ten of her cats, put one to sleep, found a home for three, and worried about whether I'll have to euthanize the other six, a mother cat and five kittens, because no one seems to want them. (Everyone coos and says how sweet they are. Possible home for the mother cat, against all odds. No takers for the kittens, though.) On the heels of finding homes for two and euthanizing one of my friend's cats back in the spring, I can definitely say that my sentiment in looking for homes for ten cats is, "Enough Already."

All of these things have been rough, but somehow I anticipated them because my mother never dealt with any of these things. Because she was ever fearful of everything but everything that could take her out of her bubble, the bubble where even catching a female cat that kept having kittens and getting her spayed was too much of a risk because "then the cat won't trust me anymore or let me pet her so what's the point." (Point would be my not having to bottle feed four abandoned kittens in one litter and find homes for five of them in another litter.) Yes, it's been good times. I laugh darkly when people ask me if I'm grieving and bite my tongue to keep from saying "I'm too effing busy to grieve."

I guess, if you read this blog, you know I also anticipated the loss of my mom's huge, sprawling, beautiful but overgrown garden, which was more like a forest by the time she died because she had been unable to work in it for more than two months by that point. But I had plans, and had asked her friend and fellow gardener to help me remove some of my mother's precious plants to use them in her own garden. I was assured repeatedly that everything was set with the friend. I had also arranged for my mom's yard guy, post removal of the special plants, to severely trim back things from the walls of the house, which will be tented for termites on December 5, and in general to make things more navigable. I blithely went away, sure it was all taken care of. The friend's gardener was going to dig things up. The friend's gardner knew what he was doing. In spite of the English/Mandarin language barrier, and the Mandarin/Spanish barrier. The friend. The gardner.  My mother's yard guy was going just going to trim things back. This was all going to work out okay. All the irises, all the special ground orchids, but especially the rare plants, would be taken care of.

Boy, was I naive. 

So when I showed up on a Monday morning, one month after my mom died, and saw the rare and difficult to cultivate, endangered azalea from Luzon razed to the ground, I cried. The special Chinese imperial jasmine that was hard to cultivate, was in similar circumstances. They were supposed to have been dug up and carried safely away to their garden haven. Where I expected big holes in the ground, instead I found corpses of my mother's beloved plants. The fragrant, heritage gardenia, grown from a cutting of my grandmother's favorite gardenia? (You know about me and my Irish grandmother, right? You go check out modern gardenias with your nose. Like modern roses, they often have hardly any scent. This was from a plant that was growing in my grandparents yard sixty years ago. And growing gardenias from cuttings isn't easy...) The gardenia was broken off at ground level and uprooted, instead of being pruned back. I was really just too stunned for words. I'd already been dealing with a house in which every time I turn around I find some fractured (literally) relic of my childhood, whether a little marble bust of a child reading a book, or a genuine wedgwood vase or the large mineral specimens from my collection that my mom snagged from my room while I was in graduate school and placed precariously in her garden and then allowed to get broken. I'd already seen so much memory from childhood broken. But this just took my breath away. My friend Maria was one of the only people that got it. She stood looking at the tatters of the garden and cried with me. 

Mammaw's Gardenia

I guess the wreckage of the garden is final proof that Mom is really gone. With all her quirks, her bubble, her Fox News love affair and her infuriating ability to deny reality and be passive-aggressive with me all while asking for my help... It still felt like a vise had gripped my heart. As much as I resented her, I still loved my mother. And that garden was the most important thing in her life. Immediately, my husband and a bunch of other people told me 1) I tried so hard, 2) the cats were more important, or 3) my personal favorite, it was just a bunch of plants. 

Maria was spot on, in her hazy English: It is too awful. It feels like she died all over again.

Azalea, Rhododendron subsessile, Coral Gables, Florida

Yesterday I was in a store and I saw a packet of Cherry Rose Nasturtiums. They were my mother's favorite color for these annuals. It's a variety that is usually hard to grow. She used to pierce each seed with a hot needle to fracture the shell a bit, to make it easier to start the seeds. She'd always grow a few extra to give to me when I lived in my former house, which had better gardening space. I looked at that packet and just started crying. A store clerk asked me if I was okay and I said "not so much." 

Grief is the oddest thing. In the midst of feeling overwhelmed and resentful and exhausted, it still finds something to steal from you when you feel there is simply no room for anything else. It can still take your breath away.

© Bright Nepenthe, 2016

Grief, or The Triumph of Nature over Nurture

I'm still trying to parse it. The grief over more than a decade long labor of love, hard work and very literal sacrifice. The risks that were taken, marital and emotional. The huge emotional investment. The financial investment, which, to be frank, consumed no small amount of a personal trust fund. I still wake in the middle of the night and think, no, no, it's a dream: Your adopted child isn't a drug addict who is so far gone that he is selling his personal possessions to fuel his habit, and that of his friend whose bong he broke. He didn't just tell you on FaceTime that he feels wonderful and stress free and that this is the best he's ever felt. And he didn't liquidate most of his checking account's available balance on the 1st of April by the 2nd of April on drug paraphernalia and drugs. He didn't text me on Friday with the facile request for a cash deposit bail out I wouldn't give him, after successive and rapid overdrafts on his checking account, thinking somehow that I hadn't noticed the $385 drug paraphernalia purchase, the cash withdrawals and deposits of cash from that TV or bike he mentioned he was going to sell. He didn't stop going to class, stop eating gluten-free in spite of the celiac disease, start gaining 70 lbs, stop cutting his hair for three months, stop shaving his beard off for two months or stop living in his dorm room that we paid for, with his friends who were not drugging, in order to go live in the apartment of his friend whose parents evidently haven't noticed they are supporting more than just college for their son.

But he did.

Grief. people. 

Twelve years of knowing a child you realize that you no longer know. That you kicked out of the house in late December 2015 for his explosive and seemingly irrational anger and demands for money that raised that visceral red flag that you didn't quite understand on a cerebral level at the time but that you felt with every fiber of your being was a sign something was very, very wrong. All of which you now see, thanks to the paradigm of years and years in the child welfare system dealing with substance abuse cases, through the filter of substance abuse behavior. The paraphernalia charge on his bankcard and stark admission of enjoyment of his drugging, bailed-out-of-life life, both by FaceTime and SnapChat, only confirm the very saddest of realities.

So much loss. So much grief. Really, there are no words to define it.

The genes... They won. They won big. They crushed the nurturers. They crushed their very souls.

© Bright Nepenthe, 2016

The Hurting Redux, or Mental Illness Stole Another One of My Friends

From The Bumper Book, illustrated by Eulali

Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;

Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
~ William Wordsworth, 

from Ode on Intimations of Immortality... (Tintern Abbey)

Last month, a friend of 28 years committed suicide. She had been plagued with depression most of her life and had a pretty good Cluster B personality disorder set. She was also beautiful, smart, funny, and poignant. She loved cats and Shakespeare and flowers and pink and lace. She loved fairy tales, poetry, classical music, and art. There was her love of The Twilight Zone and the conflicted opinion about the merits of Nathaniel Hawthorne and why Hemingway was horrible but wonderful. She was a great supporter of civil rights and liberalism. We loved so many of the same things. We met in 1988 and would fall out of touch sometimes, but always fell right back in sync when we were in the same geographic place again. I knew she was mentally ill, but I loved her in spite of it. She knew that I knew. Eventually, she told me much about her history and how it all started. Ironically, her history was so much like that of my other friend, the one that committed suicide in 1997, who left me in charge of finding homes for all her pets. Back in 2012, I saw the writing on the wall about how this whole thing was going. It finally went there. Frankly, the circumstances are so freakily similar to those that took my friend, who I called "Cindy" in my post in 2012, that I just can't even.

My friend had a kind and gentle heart and, in her own way, raged against the dying of the light even as she tried to take apart the lamp. I feel, quite unreasonably, as though a world that would let a person like my friend wither in her mental illness until there was nothing left is just a messed up place. But I guess we already know it's messed up, especially for the mentally ill.

My friend trusted me with what was most important to her- her kitties. I found what seems like it will be a wonderful home for two of her cats (together) but had to make the excruciating decision to put the third one to sleep because he was very ill with FIV. He was a sweet kitty, the sibling of the two girlcats and of a lucky one-eyed boycat that I placed with my BFF Gloria, almost five years ago. I'm still wracked with, not exactly guilt, but heartache, over the decision to put Hamlet to sleep. I consulted with a lot of people about the decision, and the only potential shelters I'd found to provide sanctuary would have kept him in a cage. I couldn't be sure if they would really attend to his painful stomatitis. Everyone assured me it was a valid, or even a good or right choice.

On Sunday, I received a box, full of my own books that I had loaned my friend over the years, with what appear to be some of her final messages, scrawled all over on the outside of the box. I say final because that last "please," at the end of the "forgive me- please take care of my cats" just trails off. First and foremost, on the top of the box was her message about Hamlet having FIV. I keep looking at that box, wondering if fulfilling 66% of her wishes was good enough. I'm trying hard not to beat myself up over it. But it's really hard. Preventing suffering seems like the best choice, though. I wish I could have done more. For her, too. She was in so much pain.

                   

So I watch her fish (I also inherited them), and listen to my Blanchard wind chimes. History does repeat itself. 

It feels no better the second time around.

© Bright Nepenthe, 2016

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