#FINALLY GOT THE PICC OUT THREE DAYS AGO!!

[froegs]

so sorry I died! Here’s mop

[phoenix-nerd]

So a little bit of a vent, I know I don't post on here often but I didn't know where else to put it. Now from here forward, I'm going to leave a trigger warning for the rest of this text: Disease, Near Death, Starvation, Bleeding, general hospital stuff, health-related issues, talk of death, mortality, etc.

For context, I've been struggling with my health for the past couple of years. I never really brought it up to anyone and I tried avoiding it to the best of my ability. I had no energy and was tired almost all the time. My stomach was in constant pain and I could never figure out why. That was up until a few months ago when I experienced my first flare-up. I started bleeding internally and I couldn't stomach anything. I couldn't eat and I didn't eat for a total of 34 days. I lost around 38 pounds in just a few weeks, I lost my ability to walk more than three feet without collapsing, I was vomiting and excreting blood, I developed a Bartholin's cyst, and so many more symptoms. I couldn't even ride in the car without being in constant pain from the movement. It got to the point that I could feel my body dying. I went to E.R. over 8 times, each time they were never helpful and asked invading questions relating to my past traumas. I even got turned away at the door of the main hospital I was a patient for. It wasn't until the last visit that I was finally hospitalized and sent to a hospital in a different city. They ran several tests on me and for my first week there I was essentially comatose. During my whole stay, I was hooked up to I.V.s and had to get a PICC line put in my arm. I had to get put under and had some very invasive operations done on me which I am not comfortable enough to disclose to anyone. After they disclosed to me that I have Crohn's disease. That's why I didn't have the energy to talk or hang out with anyone, that's why it hurt to eat and hurt to not, that's why certain foods and spices upset my body more than others. They also told me that during a flare-up, I get open sores all over the inside of my digestive system. From my mouth to the end, and because I wasn't hospitalized sooner, one of these sores tore open to another organ. I'm actually going to schedule surgery soon and terrified of it and want it to be over already. They also told me that Crohns has no cure. I relearned how to walk, I had to learn how to stomach solid food again, and I had to regain some weight. I was hospitalized for a little over half a month. I now also have to go in every month to get an I.V. infusion so this hopefully never happens again but it's never certain as flare-ups can be completely random. Crohns is also a disease that can worsen over time so I can't help but worry it'll happen or that my body may reject my treatment. I also discovered that I'm 10x more likely at risk to develop cancer and a mutation of the BRCA gene runs in my family, so while nothing confirmed as that'll all be in the future, it's still a worry for me that I might develop ovarian cancer as my life goes on. All in all, I'm terrified of the future and scared of dying. I don't want to be alone when this happens but I don't want to hurt people if I leave too soon. I know the reality of that might be slimmer in reality than in my head, but I can't help but worry. It also doesn't help that lately my hair's been falling out. I've been distant with people for so long because I wanted them to leave me thinking I was a bad friend than ever forcing them to face the trauma of losing a friend early. I know that one day I will pay the toll to the river Styx (if my family can even remember I'm pagan and to pay my way) and drink from the river Lethe, but I'm scared of Thanatos collecting my soul before I could fully live the life I want. I know I likely won't die of this disease, however, I can't but worry and feel like my world is crashing around me. If you've gotten this far, thank you. I needed to get this out of my system. This will be my first and last post like this. So the rest of my page will be filled with whatever fandom I'm into or whatever fanfic I'm reading. So yeah, more memes instead of depressing stuff like this lmao. 

[appalachianwiine]

Swim - Chapter 6 - Soon You’ll Get Better

The buttons of my coat were tangled in my hair

In doctor's-office-lighting, I didn't tell you I was scared

That was the first time we were there

Holy orange bottles, each night I pray to you

Desperate people find faith, so now I pray to Jesus too

And I say to you

Ooh-ah, soon you'll get better

“Soon You’ll Get Better” by Taylor Swift

It’s another restless night for the both of them. The nurses are in and out a half dozen times, leaving little more then two hours stretches in which they can sleep. Lydia doesn’t seem terribly fussed by this, waking rather grumpily for vitals and then drifting back off to sleep as the nurse exited the room. Daryl on the other hand manages less than four hours of broken sleep. 

By the time 7:30 rolls around Lydia is wide awake and asking for breakfast. Daryl, who had only gotten to dozing again a half hour before, sits up with a groan. He runs a hand over his face and rubs the sleep from his eyes, looking over at Lydia, who’s moved from the hospital bed to sit at the foot of the hide-away. 

“Alrigh’.” He mutters. “I’ll go down an’ get us some breakfast.” 

“Can I have pancakes?” Lydia asks eagerly. “And juice?” 

“Sure kiddo.” Daryl sighs, swinging his legs off the side of the hide-away and into his boots. “Then you gotta take a bath okay?” 

“A shower.” Lydia frowns. 

“I don’ know ‘bout that.” He mutters, bending over to lace up the boots. “You ain supposed t’ get that PICC line wet, but I’ll ask the nurse.” Lord knew a shower would be easier on him. It would give him a good 15 minutes to think.

“Okay.” 

“Good girl.” He yawns. “I’ll be back in 10 minutes. Behave.” He leans over to kiss the top of her head. 

“I will.” Lydia promises. 

When Daryl gets to the elevator he finds Ezekiel waiting. Yesterday’s buoyant, playful man was gone. The Ezekiel who stood next to him looked twice as tired as Daryl felt and as though all the joy had been sucked out of him. 

“Daryl.” Ezekiel forces a strained smile. “You and Lydia sleep well?” 

“Not really.” Daryl mutters. “Not that Lydia seems t’ have noticed. You an’ Henry?” 

“No.” Ezekiel frowns, stepping into the elevator as the doors open. “Henry got his round of chemo yesterday evening. He was up most of the night being sick. I’m going to get him something to eat. I want him to at least try.” 

“Sorry man.” Daryl follows him into the elevator, a knot settling in his stomach. Lydia’s first chemotherapy treatment was today.

“Oh he’ll get through it.” Ezekiel sighs. “I just hate seeing him like this. This is not my little boy.” 

“Yeah.” Daryl licks his lips. He doesn’t much want to make conversation, but he’s stuck in the elevator with the other man and they’re going to the same place. “So uh, how y’all likin’ Atlanta?” 

Ezekiel raises his eyebrows. “Given the circumstances it’s not my favorite city.”

“Ah.” Daryl mutters, he hadn’t thought of the reason they were in Atlanta. Stupid given Ezekiel had told him just yesterday. “Sorry.” 

“It’s fine.” Ezekiel shakes his head, stepping out of the elevator. “Lydia starts treatment today yes?” 

“Yeah.” Daryl nods. 

“I’m sorry.” Ezekiel whispers. “It’s… it’s not something I would wish on the worst of us.” 

The air between them lingers heavily as they enter the cafeteria, it’s quiet this early in the morning, the staff shuffling about quietly, one or two tired parents clutching pagers and looking around nervously. Daryl follows Ezekiel to the counter, ordering after him and taking the number given to him. He finds himself once again standing next to Ezekiel, waiting for their orders to be ready. 

“I uh - I saw Henry the other night.” Daryl says finally. “The night we were admitted.” 

“You did?” Ezekiel frowns. 

“Yeah um - he was hiding behind the nursing station and uh - you picked him up and he -” 

“Was laughing.” Ezekiel finishes. 

“Yeah.” Daryl nods. “It was ten o’clock at night on the cancer floor and he was laughing.” 

“That’s Henry.” Ezekiel smiles. “He’s always made the best of the worst situations.” 

“He's done this before?” Daryl asks. 

“No - not this exactly.” Ezekiel says. “But um - when he was four he was in a very bad car accident.” 

“Oh.” Daryl frowns. “Was he uh - was he -”

“Mine then?” Ezekiel finishes. Daryl feels his face grow hot. “No, he wasn’t. I was a newly licensed foster parent in Prince William County, and he was my first foster child. His brother and both parents were killed in the accident. The parents instantly, the brother after a few days.” 

“Shit man.” Daryl mutters. “That’s rough.”

“Yeah.” Ezekiel says. “He’s had it harder then most, but he still laughs. He still makes the best of what he’s given. It’s a gift from God.” 

“God.” Daryl monotones. 

“You don’t believe in God?” Ezekiel offers a half smile. 

“I do.” Daryl says. “But I don’ think he’s worth worshippin’.” 

“Hm.” Ezekiel frowns. 

“No speech?” Daryl chuckles. 

“No speech.” Ezekiel says. “Your relationship with God is not my business, and mine is not yours. But God has helped my son. He’s given us this clinical trial. He’s given me a place at the zoo. He’s shown me Carol.” 

“‘S a little preachy.” 

“You asked.” Ezekiel smiles. 

“Fair.” They linger in silence until Ezekiel’s number is called and Daryl’s shortly there after. As they’re walking back towards the elevator Ezekiel speaks again. “I hope Lydia handles her chemotherapy well.” 

“Thanks.” Daryl nods, stepping into the elevator. “How - when will we know?” 

“Well every child reacts differently.” Ezekiel says. “Henry handles some better then others. He does fine with the cisplatin but the vincristine is pretty hard on him. Thats the one he got last night, I expect we’ll be here for at least a week with the side effects.” 

“Shit man.” Daryl mutters. Will it be like that for Lydia? She had a different kind of cancer, surely the treatment would be different? 

“He’s a strong boy.” Ezekiel says. “He’ll get through it.”

“Yeah.” 

They  linger in silence until they get out of the elevator and make their way to their separate rooms. Lydia takes the pancakes and juice with glee, someone’s turned on the television for her while he was gone and the grating sound of Disney Channel ran through they room. Daryl took his coffee over to the pull out bed and sat down, sipping it gingerly. The disney jingle pierced his brain as one of the many formulaic shows started up. He needed sleep, but coffee would help for now. 

The door pushes open, reminding Daryl for the millionth time that their world is completely different then it was two days ago. 

“Hey Lydia.” Dr. Rhee says. “Sleep good?” “I guess.” Lydia nods, not really paying attention, her eyes focused on the TV as she ate.

“Good” Maggie grins. “Mind if I borrow daddy for a bit?” 

“Okay.” Lydia shrugs,. 

“Come with me Mr. Dixon?” Dr. Rhee motions him out of the room. 

“Yeah.” Daryl nods, picking up his coffee and following her into the hall. His stomach twists into more knots. “Are her biopsy results bad or something?” 

“They’re not back yet.” Dr. Rhee assures. “I just wanted to talk to you about the chemo she’ll be starting today and get the consent forms signed.” 

“Oh.” Daryl nods. “ Yeah um, sure.” 

Dr. Rhee leads him to the nurses station and picks up a clipboard and pen, holding them out to Daryl. He takes them. The form is thick, at least ten pages long and on the top page alone he see’s a bold heading ‘Vincristine effects and side effects.” The foreign word floats in front of his eyes, 

V I N C R I S T I N E. 

It sounds almost as bad as ‘Leukemia’ does. 

“Just in here.” Daryl blinks, Dr. Rhee is standing across the room. He nods, and hurries to the door she indicates. The room is small, a little more personal then the other rooms. There’s a low table with a few toys, and a hot water heater and packets of tea and instant coffee by the wall. A couple of arm chairs sit against one wall and there’s a table with three chairs - one to one side, and the other two opposite - in the middle of the room. “Would you like a minute to go over the form?” 

“Nah.” Daryl shakes his head. “Jus’ - tell me ‘bout the chemo yerself.” He figures she’ll be able to explain it better then the consent form can. That will be full of legal jargon and confusing terminology. Daryl wasn’t stupid, but he wasn’t going to attempt the consent form until he had a bit more time. 

“Right.” Dr. Rhee smiles, taking a seat in one chair and motioning Daryl to the two opposite. He sits heavily in one, setting the clipboard down with a soft thud! “Today we’re going to give her a round of vincristine. It’s a type of chemotherapy, the most common used in treating most pediatric cancers but particularly leukemia’s. We’ll be using her PICC line to administer the drug, but because of the effects of vincristine on the kidneys we’re going to push fluids first. She’ll get fluids for 4 hours and then a half hour of chemotherapy followed by four more hours of fluids.” 

Eight and a half hours of stuff going in her and only a half hour of it the medicine she’d need. Good lord what did that mean it would do to his little girl? He swallows hard and nods. “What um - what - when will stuff start happenin’?” 

“Side effects or when will it start killing the cancer?” Dr. Rhee asks. 

“Both I guess.” 

“Well, it will start killing the cancer almost immediately, but right now there’s so much in her body we’re going to have to do quite a bit of it in conjunction with other therapies to get ahead of it.” Dr. Rhee explains. “Now the good thing is that vincristine is predictable. We’ve been using it for decades, so we know what to expect and how to balance it. Some effects take longer than others but she's probably going to be pretty nauseous not long after she gets the dose and we should expect this to increase. We can give zofran if things get too bad, but she probably won't be very interested in food. She might throw up, and diarrhea isn’t uncommon either. After about a week of treatments her blood counts will be at their lowest, that’s when we really need to be careful about infection. It’s likely she’ll get mouth sores and they’ll be pretty painful but we can manage them with morphine.” 

“A - a week.” He mutters. “She’ll uh - won’t we have a treatment plan by then?” 

“Yeah, we will, but vincristine is a staple in all leukemia treatment. It’s what we combine it with that changes.” Dr. Rhee says. 

“And we - her hair?” Daryl mutters. 

“It depends.” Dr. Rhee says. “Some kids want theirs shaved as soon as it starts falling out, but others want to wait until it falls out on its own. Child life came and talked to you?” 

“Yeah.” He nods. “Gave her a Barbie with uh - with wigs an’ hats an’ stuff. Seemed t’ like that.” 

“Good.” Dr. Rhee sounds far away now, the knot in his stomach growing steadily as the words fill his mind. Her hair. A week. Vincristine. Leukemia. Cancer. The words run across his mind in bright flashing colors, filling the whole space and leaving room for little else. Words he’d never thought about before and feared were now front and center in his mind. “Mr. Dixon?” 

“Huh?” His eyes snap up to hers. “Sorry did - can you repeat that?” 

“I asked if you had any other questions.” Dr. Rhee frowns. “Do you need a minute?” 

“No.” He says hurriedly. “But uh - are we gonna be here the whole week?” 

“Probably more like 2 or 3.” Dr. Rhee says. “First admissions are usually long.”

“Oh.” Daryl mutters. “I uh - I didn’t really… prepare for that.” 

He didn’t have another set of clothes and all of Lydia’s were mismatched, haphazardly grabbed out of the dryer in a panic. Then there was the dog. He couldn’t be left with Rick and Michonne indefinitely. And work. He’d have to talk to his captain about a leave of absence. It was something he hated to do, Dwight had already been so understanding of the situation with Lydia’s adoption. 

“You met Carol?” Dr. Rhee asks. Daryl nods. “Well she can help you with some of that. She has a network of people that can help. You have her number?” 

“Yeah. But I don’t want to be a bother.” Daryl says. 

“You won’t be.” Dr. Rhee insists. “Even if it’s just coming to sit with Lydia for an hour so you can get your stuff she’ll be happy to help.” 

“Yeah.” Daryl mutters. “I’ll give her a call I guess.” He won’t have much choice. It’s the start of the work week, everyone else will be working crazy hours but a teacher was predictable. “And uh - can Lydia have a shower?” 

“A bath.” Dr. Rhee says. “She needs to keep her PICC line dry, but I can get her a cast cover so she can bathe more comfortably.” 

Well he wasn’t going to get his few minutes of peace then.

“Thanks.” Daryl mutters. “Uh is there anything else I should know?” 

“No.” Maggie shakes her head. “Just the consent forms. I’ll give you a minute to go over them.” 

“No need.” Daryl mutters, reaching for the pen and signing his name at the back of the forms.  “I ain’ got much choice if I wan’ her t’ be okay.” 

“I understand.” Dr. Rhee nods, taking the form from his outstretched hands. “I’ll send the nurse in to start her fluids in a half an hour so you’ll have time for that bath.” 

“Thanks.” Daryl mutters. 

As predicted Lydia was not thrilled about the bath and not being able to use her arm. Daryl has to wash her hair himself, scooping water over her head with a cup in a fashion he hadn’t done since she was six year s old. It was something she clearly wasn’t thrilled about, fat crocodile tears rolling down her face and her voice a high pitched whine the entire time. Daryl does his best not to look at the bruises lacing her torso and legs as he washes, dries, and helps her dress. They’re turning yellow-green today, and he hates the sight of them, they make him angry. 

The fluids go in surprisingly well, once the nurse explains to Lydia that it’s just like water she doesn’t have to drink she’s surprisingly compliant to them being attached. Within a half an hour however she’s up for the toilet. It’s a bit of an ordeal to drag the infection pump to the bathroom and back and it’s one they repeat every half an hour or forty five minutes. Dr. Rhee hadn’t been kidding about keeping her hydrated. He hadn’t seen her potty dance this much since she was much smaller, and it seems to frustrate her too. He expects relief for them when the fluids finally stop, but then Dr. Rhee enters the room holding a small yellow bag with a biohazard sticker on the front. 

Jesus Christ he’d take her to the toilet a thousand more times to avoid that. 

“Okay Lydia.” Dr. Rhee smiles. “Are you ready for your medicine?” 

Lydia frowns warily at Dr. Rhee, and her eyes fix on the bag in her hands. “I have to take all of that? Does it taste bad?” 

“Well you don’t swallow it.” Dr. Rhee says. “It goes in your PICC line just like your fluids, but some people say they taste it anyway but it just tastes like metal.” 

“Does it taste a lot?” Lydia’s even more wary, he wishes Dr. Rhee hadn’t told her that.

“No.” Dr. Rhee promises.

“Can daddy sit with me?” Lydia asks, looking back over at Daryl as Dr. Rhee approaches the infusion pole and disconnects the fluids. 

“Of course he can.” Dr. Rhee smiles, handing the empty bag of fluids to the nurse. 

“Daddy.” Lydia whimpers, holding out her arms. Daryl climbs onto the bed and lets her crawl into his lap. 

“‘s okay.” Daryl whispers, running a hand over Lydia’s hair and settling back against the pillows. She’s shaking in his arms, her face turned pointedly to the infusion pole. He kisses her hair and looks over at Dr. Rhee, the medication is connected now and he watches a thin stream of yellow fluid move down the line, into Lydia’s arm and up towards her heart. It makes him feel sick. 

“There.” Dr. Rhee says. “All connected.” 

Lydia doesn’t answer, and Daryl pulls away slightly to glance at her. Her eyes are glazed over and she's whispering very softly. “Lydia oh Lydia, oh have you seen Lydia.” 

“Hey, hey,” Daryl whispers, holding her tighter and trying to get her to snap out of it. “”S okay.” 

“She was singing that in the OR yesterday.” Dr. .Rhee says.

“Lydia oh Lydia, that encyclo-pidia” 

“She did?” Daryl’s heart sinks. She had to have been utterly terrified to sing that. 

4 years she’d worked her ass off to get to a place where she could express her emotion. Countless hours of therapies and difficult conversations and the constant reinforcing that it was safe to express herself, to not disappear like with her mother, and here she was regressing before his eyes. He wanted something different. He wanted better. She deserved better.

“Shh.” He whispers, kissing her hair. “It’s okay to cry. Jus’ cry.” 

Lydia never does though, but she doesn’t let go either. 

Towards the end of the infusion she drifts off to sleep, having been utterly worn out by the episode. He doesn’t move or put her down, in his arms she’s safe. In his arms he can protect her. 

Please, he begs silently Please let her be okay.

[coolpolarbear123]

Band Camp Day 7

To quote me at Taco Bell earlier: “This week hasn’t been an emotional rollercoaster--it’s been an emotional downhill with [our band director] fueling it.”

August 25th, 2019

10th Grade | 11th Grade | 12th Grade | Last Year | This Year | All

Day 1 | 2 | 3 | 4 | 5 | 6

To the ready...:

It defeats the purpose of linking things days after making the posts, so I actually took the time to make the links, you’re welcome

Also I forgot to mention this, but a few days ago, I went up to the piccs and said, “Does it ever occur to you that the piccs essentially have a burn book” and now we’re making that

So today was a three-hour day (whoa)

It started with a band picnic, where all the piccs went except for Roommate and one other member of GB (I mentioned her yesterday, but I don’t think I made a name for her)

They had work

NSL hung out with the saxes

The rest of us took a cute picture though

We went out to the hiking trails and hung out on the beach (we’re next to one of the great lakes asdfghjkl)

I say that like the three people who read these don’t know that

I could straight up use names

Anyway we collected rocks, the mellos and tubas were there, we sang songs and changed the words so that it was all about rocks

We eventually sang some Phineas and Ferb songs, doing the same thing

“Bow chica wow wow/that’s what my rock rock”

Anyway, after that we had our three hour rehearsal

the entire thing was supposed to be on our actual football field, but we were on the practice field for two and a half hours so hmmm

Only thirty minutes on the field

hmmmmmmmm

We were mad at that

But before we get to what we did on the field, we have to talk about what we did on the practice field

Only halftime

Six new pages of drill, three of them wrong

“Walk in 8-to-5 for 14 counts, turn around, and do it for 28″

However the dots we were supposed to end up at were not 14 steps and 28 steps away

So like had to fix that

That’s what happens when you reuse old drill

Also person 5 was charted twice, and trying to fix that was like: BD: “Okay go to that dot” #5: *Goes there* BD: “Why isn’t there anyone in either of those spots?” The picc section: ????????

Yeah so with the band properly annoyed and now forming drill that straight up looks like Meijer-bought titties, we finally got to go into the dome

To quote my roommate, “They could be titties or the finest ass depending on your mood.”

Where we did, like, two run-throughs of pregame

thanks

Non-compliance stuff

If one trombone is noncompliant, the entire section goes up, and this was the third day in a row they didn’t go up, so go them

Last year they were up every day

One of the noncompliance songs is this song that goes “I’m alive, awake, alert, enthusiastic” with arm movements

And the piccs reference it quite often

So a few days ago when it was the noncompliance song, you better believe the piccs were doing it in our seats

(we sit in an arc and watch people humiliate themselves in front of us for noncompliance)

When we do the handshake, the actual handshake bit of it is four beats, so we literally say “alive awake alert enthusiastic”

Oh I remembered what the other G’s are in “The GGGGG’s”

Gays, God*ammit, Gordeeta, Gamers, Gingerbread

I’m Gingerbread--we assigned everyone to one

We sang the cult songs

Last year we ended in the band room, this year in the dome (our football field)

Then GB went to Taco Bell because that’s a picc thing

We’re already planning picc bonding for tomorrow, so that’s cool

But yeah! That’s the end of band camp! It ended on a pretty chill day but because of the lead up we’re all tired and emotional (angry)

I’m gonna go be productive and e-mail people/sign up for classes/clean/get ready for the first day of classes tomorrow/etc

I have an 8am and it’s 10:04 pm, so that’s how we are

I’ll update the links tomorrow, since I have a ton to do tonight, but thank you guys so much for reading! As always, shoutout to the the members of my first band whom I miss so much. I finally got to see you guys again last spring, and you mean the world to me. Shout out to my second band for sucking so much I needed to create this series. Shout out to my third band for being the biggest family I’ll ever had--especially the piccs who have grown so much in the past two years. You guys are incredible

[justinsdaysinthedark]

Post # 6 - It is what it is

I'd be lying if I said I haven't spent the past half an hour with tears flowing from my eyes staring at a blank screen wondering how I'm going to get everything I've got floating in my head out. I suppose listening to Coldplay live in Argentina probably wasn't the best choice of music to set the mood. I'll work on that one in the future...

Where do I start? It's been a question I'm often asking myself at the start of these blog posts and it's certainly not the easiest one. What do you guys know? There's been so much happen since my last post on Thursday night.

Friday July 26th: I saw my doctors around lunchtime who came in quite concerned. Whilst they were confident my lymphoma was one called DLBCL (Diffuse Large B- Cell Lymphoma), some tests had come back with suspect results that it could be a more aggressive and harsh type of lymphoma called Burkitt's lymphoma and if confirmed, chemo was starting that night with no time to waste. There was also one marked in the middle (a cross of the two) called Burkitt's Like Lymphoma which is treated similarly to DLBCL. Whatever it was, I couldn't change it. I just wanted answers and if treatment needed to start, let's get it underway!

Adam, my incredible haematology doctor sent off another test of my gall bladder to finally get the confirmation I was after. It was urgent. He had to know. It was reassuring of Adam to state "Justin, we need to know what this is. Preliminary results are due back later this afternoon and that will hopefully rule out Burkitt's. if it is Burkitt's, we'll start chemo tonight and I'll be with you every step of the way - even if I have to stay back a few hours."

I know doctors earn a fair coin on a lazy day, but how many give you that much confidence that you and your health is important to them? I'm going to have it a guess and say not many but alas, I am so incredibly lucky with the team of doctors I have.

4:00pm and Adam strolls in the door heading straight for my room. My heart drops, similarly to what it had when Michael dropped the news I had lymphoma. "Good news. Preliminary results are back and we're confident it's not Burkitt's. You can't rule out anything in life, so there still is a small chance it could be. We're happy to wait for the final results on Monday, figure out a treatment plan from there and start Chemotherapy next week. Spend Saturday and Sunday on day leave and I'll see you next week."

This was news to my ears. In a time of what has been negative or no news, I could spend the weekend with family relatively freely and forget everything was happening for a few hours each day. My Uncle Bob and Aunty Denise were down from Tasmania to see me, as was my Aunty AJ and cousins from Bairnsdale so it all felt like it fit into place.

Friday night saw me considerably more relaxed with this news...that was until Collingwood started and it was the demolition it was. Slightly humorous side note, the nurse came in around 9pm for my nightly observations. Naturally, my heart rate was up a bit more than normal watching the football (118BPM - normally between 70-85BPM). This caused the nurse to call in the team of doctors who wanted to put me on an ECG machine for the night and monitor my heart. I assured them it was because Collingwood were on and if they gave me an hour, I'd be okay. It took some convincing, but it finally worked. Back they came an hour later and it had gone down - crisis averted.

Saturday afternoon and evening was wonderful. I went down to dads for dinner and was fortunate enough to spend some much needed time with family over a beautiful dinner and good laugh.

Sunday was much the same. I went home, mum did a fair chunk of washing for me as I spent it being me. Seeing Courtney, napping in my own bed and even headed over to Fountain Gate and got some much needed new clothes and other miscellaneous items - something that seems so simple but is such a luxury when you've spent the past 15 days in hospital.

Monday July 29th: They say the more you think positively, the more positive news you shall receive....or it goes something like that right? I woke up this morning the most upbeat and best I'd felt in weeks. I felt fine. I felt no pain, almost like I'd woken up from a shitty hotel! In all honesty, I felt like I'm abusing the system however I keep being quickly reminded how much I need to be here. Did I wake up so positive because I lived my old life for 16 hours over the weekend? Is it because I was hoping to hear a reasonably positive outcome with this lymphoma test? Probably a mix of both if I'm honest. But whatever it was, I was hopeful.

Adam came around at roughly 10:00am. Didn't really have much for me in terms of news but more of an outline of the day. If they hear the results of the test they were waiting on, they'd write me up a treatment plan ASAP and get chemo started this afternoon. At worst, I'd be starting it tomorrow (Tuesday). They just needed that definitive answer of what type of lymphoma I have - an answer I'd love more than anybody.

Either way, we agreed i'd need a PICC (Peripherally Inserted Central Catheter) line in which basically is a long-term cannula. It runs from the inside of my arm right up and around and stops basically just outside my heart. This is for easy access for the chemotherapy and even an easy exit for blood tests - something that's proven incredibly difficult to take from me over the past few days. Additionally, these lines can last up to six months verses the three days you get from a cannula. There were too many positives to say no to!

This wasn't scheduled for any time in particular, so 1:00pm came around and I was about to be taken to get the PICC line in.

Just as I was about to leave, Adam came in with a few words I'm all too familiar with. "Well, the pathology tests we were waiting on have come back inconclusive..."

Woah. Wait. What? How do tests of my gall bladder that was removed six days ago come back inconclusive? How does one of the main sources not have enough 'data' to tell them what sort of lymphoma I have? I was just stunned.

Adam continued "As a result, we can see some signs of Burkitt's lymphoma and that's what we're going to treat you for. You're young. You should be able to handle it and it's better to over treat you than under treat and be stuck where we are at the moment. It's an intense 16-day chemo treatment that will totally wipe out your red and white blood cells as well as your platelets. We foresee you being in here for another 3-5 weeks, depending on how well your body goes getting these levels back up to normal post this first treatment..."

I honestly say this but that's all I remember from this conversation. I was hoping I'd be heading home this week but looks like that definitely won't be happening. Today marks day 40 of the past 55 days in hospital (day 15 of this stint) and if I go off the longest suggested time expected, I have another 35 days to go. That honestly crushed me.

I got taken down to get my PICC line in - quite an easy process. Very similar to putting in a larger cannula, just a whole lot longer and uses local anaesthetic as well as being guided by an ultrasound and X-ray. I'm lucky enough to have two ports, which will hopefully speed up some of my medication and how much they can pump in. Does it feel weird? The only weird part was feeling it slide down past and near my heart - but that's okay now!

By the time I return, dad made his was in to try and help process the news. We get Adam in to once again explain the process. In layman's terms, I'll be starting an intense and high-dose 16-day chemotherapy program kicking off tomorrow (Tuesday) morning. Most of the time across the next 16 days, I'll be hooked up via IV drip getting whatever medication is required. I think I saw I have rest days on days 7 & 8 which I suppose will give me two days to look forward to. At the end of the day, it's something I'm not certain on and will be a day by day process and constant learning about what's going into my body to help fight with me.

I do have one request for you all. With my body not producing red or white blood cells or platelets over the next few weeks, I do request if you are planning to visit however are sick to stay away those extra few days. With my immune system going to be at the lowest it's been, I don't particularly want to pick up something I don't need. Additionally, as much as I'd love flowers, they're also banned due to the infection risk of the spores mixing with the chemotherapy and causing some dangerous damage from the inside.

At the end of the day, if you're not sure please message me and check as I'm not entirely sure myself about everything. I'm constantly learning as I'm going.

How am I feeling? I'm nervous. I'm nervous at the unknown. How will this affect me? How bad am I going to feel? Will I lose my hair? What will my energy levels be like? In advance, I do apologise if over the next few weeks I'm not myself. Truth be told, that's because I probably won't be.

In a way, i'm finally excited to start my treatment first thing tomorrow morning (after yet ANOTHER lumbar puncture). I was so envious of both people next to me getting their first rounds of chemo today. I know mine will be intense but I just can't wait.

I've learnt so much about cancer and chemotherapy over the past four days and I know there's so much more to learn. Today I learnt I'll be incredibly highly cytotoxic, which basically means all needles and anything used on me need to go in a separate bin just for me. Additionally, I'll have to get used to the good old double flush after the toilet to ensure all waste is disposed of. Mouth ulcers are a big issue with most chemo patients as well. I'll have to start brushing my teeth after every meal and taking a special mouthwash 3x daily to assist with keeping these under control. There's plenty of other little things, but they're two I least expected.

Everything really hit me last night....not like it did tonight though. I just had twenty minutes to reflect and it just became a sudden realisation. What I'm going through is real. It's not a 'joke' anymore. It's not something they're looking at as a potential cause. It is the cause. I have a legitimate medical issue and it's finally time to fight lymphoma. All well and good to be talking the talk like I have been - it's now time to walk the walk. This sits well with me. If I give somebody my word, I do whatever I can to get it achieved. Unfortunately for the lymphoma throughout my body I've given it my word and it's time to fight it. Round one begins tomorrow morning.

I leave tonight feeling a whole lot better than I did when I started tonight's post. I didn't learn from my words earlier as Coldplay live from Argentina is still playing however I'm in a much more comfortable mind space.

My best friend of a lazy 20 years, Dylan visited tonight with his partner, Jacqui. One phrase popped up more than most and they made me aware it was a common phrase coming out of my mouth.

"It is what it is."

I can't control what's happened to me as "it is what it is." What I can control from here though is how I fight lymphoma. Thanks for the visit tonight guys, I appreciated the two hours spent here in what's been an incredibly tough afternoon.

Much love.

Juzz xx

[gothify1]

Several weeks ago, I got an email from Cartier’s PR team inviting me up to San Francisco to attend its Women’s Initiative Awards. From previous experience, I knew that press trips with Cartier are fun and fancy. However, I didn’t know I was in for an experience that would move me deeply. Upon arriving to an uncharacteristically sunny and balmy San Francisco, I was introduced to the Women’s Initiative program from previous laureates and Mercedes Abramo, president and CEO of Cartier North America. I learned that the Cartier Women’s Initiative is the world’s largest competition that gives female entrepreneurs who are running social impact-driven companies the opportunity to win coaching, mentoring, and financial support. I’m going to hit you with some facts to put this in context: Since the initiative started in 2006, more than 18,000 women have applied, and more than 200 businesses from 51 countries have been supported, which has created almost 7000 jobs around the world.And not just any jobs, but jobs that are directly making the planet a better place. These businesses are doing awe-inspiring and frankly humbling work. I heard from finalists who were doing everything from creating a centralized 911 emergency system in Kenya to providing employment opportunities to Middle Eastern refugees. And it’s not like Cartier has to run this program. I would guess they might sell just as many Love bracelets without it. Yet the company sees tremendous value in supporting women all over the world. In Abramo’s words, “It’s very dear to who we are and what we stand for. We’re a company primarily targeted at women, so it aligns very well with our values of bold, pioneering women.” After getting to hear elevator pitches from all 21 finalists, there was one woman I knew I had to interview. As you might have guessed, she and her two co-founders have a fashion-related product, but one that happens to be changing the lives of people with chronic illnesses. I sat down with Emily Levy in a sunny little corner of the room to learn more about her story. Levy went undiagnosed for seven years with chronic neurological Lyme disease, and when she finally got her diagnosis, she was told she would need a long-term IV to pump antibiotics to her heart. As for how Levy was supposed to protect this expensive medical device (known as a PICC line)? She was advised to wear a sock on her arm. Yes, as in a sock designed for feet. “I was known around campus as the girl with the cut-off sock on her arm. I noticed that people were treating me differently once they could tell that something was going on with my health,” says Levy.  Drawing from her experience, she was inspired to create Mighty Well, a company that sells stylish clothes and accessories for people with chronic health issues. “What we’re putting forward is a sick girl who started a company with her two best friends,” says Levy. “I was in a sorority, but not many of my ‘sisters’ were there for me. It was really my two best friends—now my co-founders, Maria del Mar Cortez and Yousef Al-Humaidhi—who helped to take care of me when I could only take on a partial course load, could no longer go to parties, and getting dressed in the morning was hard. Even just dealing with the amount of medical supplies and nursing visits to my dorm room, they were there for me.” As if this story couldn’t get any more moving, Levy’s friendship and business partnership with Al-Humaidhi grew into a romantic relationship, and the pair were just married last month. When I asked Abrams about what stood out to her about Levy’s business, she remarked, “At [just 25 years old], she identified a problem from personal experience, and she found a way to instill confidence in others and help them through this process. It’s just magic that she put those pieces together to create a wonderful product.”. That first product is a PICC line protective arm sleeve using sportswear fabric technology—a stylish, serviceable solution for the six million people who get a PICC line placed every year, including people receiving chemotherapy. The company has expanded since then to include the Mighty Wrap, which conceals IV lines, the Mighty MedPlanner, and the Mighty Pack, a backpack designed to fit over wheelchairs that has a hidden insulated medical compartment. Levy brought up the recently released Mighty Pack when I asked her about any anecdotes from customers. “We’re a scrappy startup, and within 24 hours of releasing the backpack, we had two young women both in wheelchairs tag us on social saying that the product gave them mobility and that no one was staring at them because they had medical supplies. Dealing with my illness, I’ve felt ‘less than’ too, and I want to be a face for them and show them that just because you’re sick doesn’t mean you have to live a sick life. I still face a lot of health challenges and a lot of doctor visits, but what motivates me every day is getting tagged in those pictures.”  It’s clear that Levy’s company has a significant impact on her customers, so next I asked about the impact being part of the Cartier Women’s Initiative had on Levy and her business. In what I’m learning to be typical Levy fashion, she draws on personal experience to make her point. “My husband, Yousef, is from Kuwait, which is a huge market for Cartier. A lot of women go to Kuwait as teachers and end up marrying men they meet there. Unfortunately, a lot of women are seen as coming there with the aim to find wealthy husbands. In my case, Yousef and I met in college in the United States, and for a year and a half, I didn’t even know where Kuwait was on a map. “When I went to Kuwait for the second time to get married, I told his family members that I was a finalist for the Cartier Women’s Initiative, and they treated me like a businesswomen instead of someone who was coming to find a husband. It was a completely different level of respect because a brand like Cartier stood behind Mighty Well.” Indeed, Ambramo concurs, “It’s all about helping get these women the recognition and exposure they deserve.” That’s respect and exposure for a business that not only does social good, but also reflects inclusivity in multiple ways at its core. For my last question, I asked Levy if she had anything else to add. “Yes,” she replied, “I want to highlight that my co-founder Maria is here on a H-1B visa. She’s originally from the Dominican Republic, and we have faced the challenges that are being talked about in the media. I think it’s so important that we’re sharing our story that I’m a Jewish American, she’s Latina and Catholic, and Yousef is Muslim and Arab. And all three of us have started a social-impact company. The world is telling us we shouldn’t be friends, but I don’t believe that.” As the interview concluded, I rose from my chair without a second thought and then realized Emily was struggling and couldn't immediately lift herself from her seat. Before this moment, there had been no visible cues that Emily was sick, besides the IV port she showed me below her clavicle. Mighty Well often talks about how chronic Lyme disease is an invisible illness, and it was to my eye (until that instant). I helped her up and we swiftly moved on from the moment, nervously laughing a little as we exited the room. In retrospect, I should have paused and asked her what that felt like. To have this great interview—here she was being honored by Cartier and getting to share her and her co-founders’ important work with Who What Wear, a company she mentioned she loves and follows—and then as our conversation ended, being reminded, for likely the millionth time, that her illness can get in the way of simple actions like standing up from a chair. It could have been an opportunity for me to further step into her shoes and gain a deeper perspective on the condition that inspired her company. Without speaking on behalf of Levy, I can only assume that it didn’t feel good. But by creating Mighty Well, she’s a part of the solution—a solution that makes the daily reality of those who have chronic conditions feel just a little bit better, a little bit more supported, and a little bit more confident.

[netrf-org]

The Road to PRRT: A Path of Self-Discovery and Growth

By Josie Rubio, NET Blogger, A Pain in the Neck

Sitting on a yoga mat in a Brooklyn park, looking across at the Manhattan skyline, I recently found myself taking stock of how much had changed in just a month and a half. In mid-May, I’d just been released from the hospital for the fourth time this year, after a blood infection. Since severe NET-induced diarrhea had persisted since January, I had been doing daily IV hydration at home almost four hours a day. It was hard to imagine then a life in which my guts weren’t constantly roiling or when I didn’t have to wear diapers to bed.

An Unlucky History of Cancer

I’ve had two separate, unrelated cancers within the past five years: first, refractory Hodgkin’s lymphoma and the neuroendocrine tumors. Occasionally I buy a lottery ticket to see if my luck goes the other way. I’m always genuinely surprised when I don’t win.

I had previously had a Whipple procedure for my NET tumors in early 2016, followed by a liver ablation. Almost exactly a year ago, I received the news that the ablation was successful and the cancer was unlikely to come back. The next day, my oncologist delivered the news that they had missed seeing a new tumor in my pancreas. I would always have this cancer, which would be treated more like a chronic disease.

My tumors are pretty aggressive. Despite relatively good health up through December, I had severe diarrhea and could barely keep food down by New Year’s. My potassium dropped so low that I was rushed to the hospital. I spent most of January at Memorial Sloan-Kettering Cancer Center. I received radiation for the second time; the first was in 2014 for the lymphoma, during a month-long stay at Sloan-Kettering that also included an autologous stem cell transplant.

The radiation helped a little bit. I received several additional radiation tattoos—small dots to help line me up in the machine—so I now have a grand total of 15—14 radiation dots and one small Libra symbol I got when I was 20. “You’re like Tommy Lee now,” a friend noted about my rock star number of tattoos. However, I stopped improving a few weeks after the radiation, and I still was significantly sick with diarrhea.

When dacarbazine chemotherapy didn’t help and I ended up in the hospital for a blood infection in March, I had an embolization for a liver tumor. That also didn’t help curb the diarrhea caused by the VIPoma tumors. Finally, a few rounds of carboplatin and etoposide helped slow the diarrhea a little bit but I was so sick immediately following the chemo, I ended up in the hospital again because of a second blood infection.

Getting PRRT is good news

At every appointment with my oncologist, I would ask about the peptide receptor radionuclide therapy (PRRT) treatment called Lutathera®, which had been approved by the FDA in January. 

In June, I was the first patient who wasn’t part of a clinical trial at Memorial Sloan-Kettering Cancer Center to receive PRRT to treat the neuroendocrine tumors in my pancreas.

It wasn’t available immediately as hospitals sorted out the logistics, from health insurance to training for administering the treatment. At an appointment in May I asked and received the familiar answer, so I was pleasantly surprised the following day when I got a call scheduling a meeting with the doctor who would administer the PRRT.

In June, I was the first patient who wasn’t part of a clinical trial at Memorial Sloan-Kettering Cancer Center to receive PRRT to treat the neuroendocrine tumors in my pancreas.

Though PRRT is new in the U.S., there’s quite a bit of data on it since it’s been available elsewhere, particularly in Europe, for so long. My VIP-producing tumor, however, is very rare, so there’s less information. However, when it works, it shrinks the tumors and keeps them at bay enough to relieve the symptoms. From what I have learned, a person may experience relief for an average of three years, though I fear I will be the exception. According to the tests that measure Ki-67 markers, my tumors are very aggressive. What would I have? …The guess is something closer to six months.

The doctor explained how the targeted radionuclide therapy works: essentially like a Trojan horse. My bloodstream wheels the Lutathera Trojan horse to the NET tumor’s receptors—the enemy gates, which accept the gift of the octreotide, a synthetic hormone I also inject subcutaneously several times a day. A chelator, however, has bonded a radionucleotide to the octreotide, so once the bind has occurred, the radioactive atom emerges and destroys the unsuspecting tumor cells.

The doctor warned that, like chemotherapy, the diarrhea could become significantly worse as the cells were destroyed, temporarily increasing the release of VIPoma into my bloodstream. In addition to the Lutathera, I would also be given anti-nausea medication and a corticosteroid to combat other possible side effects, as well as four hours of intravenous amino acids to protect my kidneys from the radioactivity.

“I’m absolutely glowing”

…Oh, I would also be radioactive. I’d received radiation and had various scans over the years that made me radioactive, with the cards to carry around in case I was stopped or scanned at an airport or checkpoint and tested positive for radioactivity. But this seemed like it would be on a whole new level, the kind that might make me glow in the dark.

I would have to avoid babies and pregnant women for about 10 days instead of just one, but I would also have to keep people at an arm’s length for at least a day. My sheets and clothing that I wore for the first five days post-treatment would have to be washed separately. I was told repeatedly not to pee in the shower, something I don’t do anyway; however, I’d have to be careful about my bathroom habits since most of the radioactivity would be flushed out in urine.

That night, a mosquito found its way into the guest bedroom and buzzed around my face. “Serious question: If a mosquito bites me while I am radioactive, will it die or turn into a superhero mutant?

I arrived at the nuclear medicine department on the appointed morning exhausted. The doctors and nurses looked at my PICC line and started a peripheral IV as well and asked me questions as they explained the long- and short-term side effects.

It’s strange to be a toxic creature. There were so many precautions. People wore little booties over their shoes. They woke me up long enough to bring me to a scan, which showed good uptake of the Lutathera in the pancreas. I celebrated by resuming my nap until about 5 pm, when I was cleared to go.

A friend picked me up after treatment and took me to her apartment with an extra bedroom made up for me. “Should I put you on a blanket?” my friend asked. She put down a sheet on one end of the couch and watched TV with me from the other end of the room. We ordered takeout using the Seamless gift card former coworkers chipped in to buy me, and I used plastic silverware and my own cup.

That night, a mosquito found its way into the guest bedroom and buzzed around my face. “Serious question: If a mosquito bites me while I am radioactive, will it die or turn into a superhero mutant? Should I phone the on-call oncologist?” I asked on social media.

Friends kept asking if I would develop superpowers.

I worked remotely for a few days and stayed in my semi-isolation. I was feeling sorry for myself and crying radioactive tears when I realized my diarrhea hadn’t worsened. In fact, I had solid stools again. I took my Zofran® and didn’t experience nausea and ate all of the best types of the small chocolate bars from the mix my friends had out.

Alone with my cancer?

Going to a friend’s house following PRRT was new to me. When they asked if I had somebody at home, I started to cry—full-body-wracking sobs. I couldn’t sleep next to someone for five days after treatment. That wouldn’t be a problem. My boyfriend of 12 years and I had just parted ways. He says we were headed that way anyway. After I overheard a conversation in which he talked about how much he enjoyed reconnecting with a recently divorced friend during a business trip, and how nice it was to walk around London by himself not thinking about cancer, I knew a break up was the right thing to do, even if I felt like he was doing it for the wrong reasons. He said he’d been with me since I’d become really ill in January only out of a sense of obligation. He said he was tired of dealing with cancer for five years and deserved a vacation to Europe that he’d booked without me.

He was tired of dealing with cancer. I thought I’d dealt with it pretty well, considering, but he made me feel really bad, like I’d been a burden destroying his life. During those months I was so sick, I had actually hoped for a quick death, in part because I felt so bad for him. I had wanted him to move on, but I’d expected to be dead first.

I felt like I’d deeply disappointed everyone. Teams of doctors at a top cancer center have been helping me fight for my life for more than five years, and I was unraveling. I felt alone and abandoned despite so much support from family and friends.

Though I was staying with my friends, I had to return to my own place several times for things I’d forgotten like syringes and, inexplicably, shirts. (I made sure my ex wasn’t there, because I didn’t want to see him: he needed to stay at our apartment that week so he could pack for his upcoming move.) At one point, I found myself in the bathroom staring at his toothbrush, contemplating the satisfaction I would have at placing it in my radioactive mouth. (I didn’t, of course.)

Finding the will to fight

The break up happened in late May; I was a little in shock. I hadn’t been eating well or sleeping much for weeks. When the doctor asked me about my medications, I admitted hadn’t been taking them as regularly as I was supposed to. I felt like I’d deeply disappointed everyone. Teams of doctors at a top cancer center have been helping me fight for my life for more than five years, and I was unraveling. I felt alone and abandoned despite so much support from family and friends. It’s so easy to focus on what you don’t have.

What I did have that morning was a team of doctors and nurses, as well as a radiation specialist, prepping me for PRRT. I was introduced to two other doctors who would be observing, one of whom was from the PRRT Treatment Center in Rotterdam, early pioneers in PRRT. I couldn’t fully bask in my minor celebrity status because I kept falling asleep. In addition to my PICC line, they also put in a peripheral IV. The PRRT mechanism itself looked like a metal contraption that should be in an office supply catalog for mailroom. I actually don’t remember much as I kept falling asleep. I don’t think this is typical; it was weeks of physical, mental, and emotional exhaustion catching up with me.

Enjoying a bit of freedom

I had a Mediport® placed earlier this year, then removed because of a blood infection. The Mediport was placed again after treatment and my PICC line was removed. For the first time since January, I don’t have to do daily hydration. I can shower without using an arm shower cap or AquaGuards®.

It’s little things like that that make me like Alec Baldwin’s “enthusiastic Parker” character on Friends. Quiet bowels, diaperless nights, unencumbered showers are all cause for celebration.

About two and a half weeks after the PRRT, I felt a familiar ache in my scalp, a very specific feeling of hair follicles letting go of hair. I’d hoped it was because I’d been wearing a garden sun hat, but by Monday, tiny pieces of my super-short hair were on my pillow and my laptop and my work desk. I had been warned of mild alopecia, and my hair had already thinned from the previous chemo. Being a swarthy lady is the bane of my existence; about 90 percent of my beauty routine involves hair removal. Of course, my mustache is still fuller and more luxuriant than I’d prefer. I’d wear a wig, but I’m lazy. Yet I’d rather be bald and active—on a yoga mat, on a beach—than have a full head of hair and be attached to an IV pole four hours a day.

My bowels don’t feel quite as stable as they did initially but the doctors have reassured me that I’ll continue to improve with further treatment. I am told that some of my symptoms might come back a bit before the next treatment.

Finding joy & support

The other day I found myself crying when I saw how scans after PRRT can significantly reduce the tumors. They were tears of gratitude. I really thought I was dying earlier this year, and I’m grateful that this might buy me some more quality time with family and friends. It’s probably not a very long time, but I’ll take it. My break up hurt, but we can both move forward now with our lives and nobody needs to die first.

As for the rest of my emotional health, I still have some sad days, but I’m feeling better every day. In fact, I’m often happier than I have been in a long time. So many friends have rallied and given me so much support, I’m far from alone and surrounded by so much love. No matter how our opinions on the break up differ, here is a fact: We had six or seven containers of dental floss in the bathroom and he took all of them. I don’t want that kind of person around. From now on, I want only the kind of toxicity in my life that combats tumors, not the kind that makes me feel apologetic for having cancer. I might actually have to admit to myself that I won’t win the lottery, but many days, I still feel extremely lucky.

Editor’s Note: PRRT is not for everyone. Josie’s story is not intended to represent typical indications or protocols for PRRT. To find out more about PRRT, talk to your treatment team.

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[sciwriteblog-blog]

                                   CHRISTMAS LETTER 2017

This letter is way over the top.  There are three sections, my travails, politics, and predictions.  My recommendation:  Skip the travails and go to the next two. Trump’s recent complaints about the FBI are laying the groundwork for dumping Mueller and Rosenstein.  Trump’s tactics are unprecedented in American history, undermining public trust in basic institutions like the press and now the FBI as a pretext for “executive action.” He’ll be dumped in 2020 and possibly the Republican congress sooner.  See my comments under Predictions.  

There was lots of excitement in 2017.  Just like in 2015, I paid an unscheduled visit to Alta Bates Hospital.  Same problem as before:  bugs got in my PICC, the infusion line through which I pump the TPN that keeps me alive.  (A PICC, or peripherally inserted central catheter, is for infusing TPN (total parenteral nutrition,), liquid “food” pumped out of a plastic bag through an infusion line into my vascular system to substitute for food ingested through the normal route because my gut is sickly.  I do this every night.)  It wasn’t bacteria this time but fungi, an infection called “fungemia.”  These little buggers are floating around always and everywhere just like bacteria.  How did the fungi get into my blood stream?  Through the opening in the clave used to hook the pump to the infusion line. It’s the only way.  Once the bugs get in, they go straight into the bloodstream right along with the TPN.  Worse, they “colonize” the PICC line, growing in a warm dark place where the immune system can’t get to them.

Major symptoms this year were less severe than the sepsis in 2015:  low grade fever, rapid pulse, mild malaise.  Nicki, a nurse at Herrick hospital, coached me during one of my weekly PICC dressing changes on the fever (101.4) and heart rate (above 90 bpm) levels indicative of blood infection.  The fever had been going on for some time and now my heart rate was also elevated, so after I went home and thought about it, I returned to the hospital, just a block away, to have my blood drawn for culture.  Two days later, I got a call from the doctor:  “You have a fungal blood infection; they’re waiting for you at Alta Bates Hospital; get there as soon as you can.”  

The treatment was simple: One daily infusion of 250 mg Diflucan, an anti-fungal, over 90 minutes for the three days I was in the hospital and for up to 10 days afterward as an outpatient.  Also pull the PICC line where the bugs hide out.  I could have done all this outpatient but doctors want you in one spot, so I spent three days inpatient.  Compared to the bacterial sepsis two years ago, fungemia is a cakewalk. I was never really that sick.  Had Nicki not commented, I might have gone on weeks longer not realizing I had a potentially serious infection.

I also paid two visits to Alta Bates ER on the July 4th holiday weekend.  Severe back pain this time.  I have a developmental anomaly; one of my intervertebral discs just never became a real disc.  This is the presumed reason I can’t sit for long.  X-rays and MRI’s show a strange-looking structure where a disc is supposed to be.  Is that thing really in me?  When the mattress atop the box spring sags even the slightest bit after years of use, my back senses the mis-alignment and generates pain far in excess of what seems justifiable or tolerable.  This is the third time in 12 years of such, so I have experience with it, but this time was so bad I couldn’t get to the mattress dealer before I became more or less incapacitated.  

I slept on the floor to avoid a mattress that looked perfectly fine.  Monday, July 3ed, I couldn’t get up off the floor and walk to the kitchen.  After a struggle and realizing the pain was getting worse not better, I called 911. The fire department arrived so fast I didn’t have time to crawl on all fours to the door while still talking with 911. The firemen banged on the door, taking me and the gurney down three flights of stairs; strapping fellows those firemen.  When one asked how I got to the door, I said, “I put on my track shoes and sprinted, how do you think?”   With little appreciation for my humor, we trundled through the Berkeley streets while they quizzed me on my demographics and shot me up with something that made my head spin AFTER we arrived at the ER when I no longer needed it.

Ninety minutes later I’d been given a shot of Dilaudid the brand name for hydromorphone, an opioid pain killer, and scripts for same and Valium, a benzodiazepine tranquilizer/muscle relaxant.  I wasn’t too sure about becoming a dope addict until I got a new bed, but at least I could walk.  To get to the CVS pharmacy and then home, I used the Uber app I had downloaded two days before for just this situation.  It worked great; a driver picked me up in no time; followed by a comfortable ride to the pharmacy ….where they were out of hydromorphone in a country overflowing with opiods!  Was half of Berkeley high on it for the holiday?  Back to the ER where I asked the clerk to ask the doctor could he prescribe a different pain killer?  The doctor couldn’t, and said the muscle relaxant would do.  Okay, back to the CVS, get the Valium, and finally home.  

Next day the 4th, the same problem all over again.  I couldn’t walk.  Same drill: Call 911, say hello to the firemen, “I hoped I wouldn’t see you guys again so soon, but they didn’t give me a pain killer yesterday, so here I am,” and find a doctor more forthcoming with pain scripts.  Getting home, I struck up a friendship with an Algerian Uber driver, who agreed to drive me on errands until I felt safe enough to drive or walk myself.  Next day, Wednesday, we drove to the mattress discounter and bought the firmest one in the place.  It was delivered Thursday.  Saturday morning, after two nights on the new mattress, much relief finally. The nightmare was over, most of the meds untaken.  Long-term solution:  Buy a new mattress after 7-8 years use, at least a year before it’s time for a new on.

Medical billing is notoriously slow.  Just last week I got a bill for the ambulance ride to the hospital on the second day, July 4th.  To go less than a mile, they wanted $2,419.42.  Outraged, I called the 800 number and asked why I was billed for the second day, but not the first?  Molly, the billing agent, looked this up and told me that there had likely been a coding problem and that my supplemental insurance had probably covered the second ambulance ride just like the first.  Relief!  When we were done with the transaction, Molly asked if there was anything more she could do for me.  I said, “You just saved me $2,400, what more could there possibly be? ”  We parted on good terms.

Last year I mentioned two articles I was writing on the weighty topic of whether climate causes civil war.  Note that interpersonal violence, better known as violent crime, goes up with temperature; people lose their temper when it gets hotter.  This is not in dispute.  There is even a study showing that retaliation for hit batters in baseball goes up in hot weather.  The dispute is about whether political violence, that is, coups d’état, revolutions, armed insurrections, etc., are more likely to take place as temperatures rise. I had written a story for a science writing class about 3,000 words long focusing on the Syrian civil war including the climatology involved, the relevant history and politics of the Arab Spring, and governance of Syria, which, needless to say, is bad indeed.  There was also a second article, more than twice as long, about the general problem of climate and war.  This has relevance for a warming world, of course, but is based on historical data from years in which the temperature was above normal due to natural variation.  In warmer years was there more civic violence?  Interestingly, there was an ongoing dispute among peace and conflict researchers about just this question.  

Meanwhile, I ran across a call for science manuscripts at the Atlantic Monthly, that bastion of American liberalism.  The somewhat flippant tone of the request made me wary about just how serious they were about the science, but this was the Atlantic Monthly, so I decided to try them out. Having spent so much time on the long story, I wanted to know what chance it stood of finally seeing the light of day.  After too much time polishing them, I emailed to the editorial staff links for both articles on my Tumblr blog.  Bad idea. They politely told me they would “Take a pass on these.”  At least they seemed to have read them, but the feedback I had hoped for on how to make them publishable, especially the long one, was not forthcoming.

Pulling myself together after the rejection, I thought, “Well, these people are looking for infotainment, not science,” and sending both articles was really dumb, no matter how much I wanted the feedback.  There is really no way to know which article was problematic although it was probably both. What’s ironic is that the long article is really better even though it’s too technical because it demonstrates that three UC, Berkeley professors who claim their data show that climate causes civil war, are flat out wrong.  There is agreement among other researchers that what the data does show is that when crops fail because of heat or drought and there are marginalized groups within a society, only then is civil conflict more likely, as these excluded groups revolt. This was very much the situation in Syria, where a six-year drought ignited a powder keg of political repression, triggering the worst civil war in this century.  Climatologists are in general agreement that climate change played a role in the drought, placing stress on people by drying up their crops leading to food shortages and leaving no choice but to revolt in the face of a government that refused any aid at all.  Now, after more than seven years of war, the Assad regime, with Russian assistance, has crushed that revolt.  The Russians are supposed to be the revolutionaries.  Not under Putin.

Writing about this now, I think I know what I did wrong.  Maybe I’ll go back, write a new draft and try again, setting aside for a while my latest project.

 Politics:

Last year, I said Hilary lost the election by ignoring voters who used to be solidly Democratic. The Reagan Democrats, the Forgotten Man (and Woman), shook the political landscape.  But this was really nothing new.  For some time, political scientists have studied why working class and rural whites vote for Republicans against their own economic interest. Trump lost the popular vote by nearly 3 million, and won in the Electoral College on the basis of fewer than 80,000 votes cast in swing states that were once safely in the Democratic column, Wisconsin, Michigan, and Pennsylvania.  A small percentage of Obama voters switched to Trump in those states, putting him in the White House.  Even in the midst of the best economy in years, voters who switched from Obama to Trump are still looking for but not finding a better job, a higher standard of living, and relief from the large impersonal forces of automation and globalization that define our time.  But if disappointed by Trump, those voters will turn against him in 2020 if the Democrats find the right candidate.  But the Democrats are so divided they just might fail even with two or three more years to work at it.

As late as Spring 2016, a clueless Paul Ryan, Speaker of the House, was touting the Holy Triad of Wall Street Republicans: free trade, open borders, and tax cuts.  Trump ran against all three and won an Electoral College upset.  Now he is about to sign a tax plan made for corporations and the rich that betrays his populist base.  The real purpose of the tax plan is to create deficits that can be used as a pretext to defund Medicare and Social Security, programs Trump promised his supporters he wouldn’t touch.  Why does he sell out his base?  Because the fat cat donors who call the tune in the Republican Party want the tax cuts they bought with their campaign contributions.  Some things never change.  

Predictions  

The speculation that Rex Tillerson will quit the State Department or be fired next month was quelled somewhat by Tuesday’s State Department briefing at which Tillerson talked like a man with plans who was looking forward to next  year.  If Tillerson leaves or is ousted, then Mike Pompeo, now CIA director, becomes Secretary of State; Tom Cotton, now a Senator from Arkansas, takes the helm at CIA; and Hilary can run for the open seat in her former home state.  Pull for Tillerson because he is moderate and pursues diplomatic solutions.  Both Pompeo and Cotton are inexperienced, have military backgrounds, and are hard liners. Their ascent would tilt the scales toward war.

Trump will fire Mueller and start a national furor, perhaps soon.  You might think that Trump would find relief when he fires Mueller, but there may be only short-term comfort in the firing given Trump’s history of sexual misconduct and the new political climate on harassment and groping.  Just ask Roy Moore.

If the presidential election were held today, Trump would be trounced in the popular vote and would probably lose the Electoral College.  But the Democrats would have to win at least 55 percent in the popular vote to have sufficient margin to win the electoral vote in states where they were weak in 2016 including Wisconsin, Michigan, and Pennsylvania. Can the Democrats overcome their internal divisions, much like those in the Republican Party, and find a charismatic candidate who will excite the country the way Trump excited the Forgotten Folks?  Don’t bet on it.

There are too many unknowns to call the Senate, now precariously in Republican hands 51 49. The number of Senators up for re-election favors the Republicans, just 9 seats to the Democrats’ 24.  But “passion,” which is hugely important in the emotional business of political campaigns, favor the Democrats: energy, anger, and enthusiasm. Also, midterm elections always hurt the sitting president’s party, the Republicans in 2018.  Ditto for the House races below.  Bottom line, the Republicans keep the Senate.

That energy might win back the House for the Democrats, but jerrymandered districting favors the Republicans.  It will take high turnout and lots of atmospherics to overcome that advantage and win the 25 additional seats required to win control of the House.  Bottom line:  The Democrats win back the House.  

We will know about all these predictions except the presidential when next we meet.

Oh, yes.  This will be another year of drought in California after a two-year hiatus from the three years of extreme drought before the hiatus.  Some things never change.

Happy Holidays,

Fred

[nah-nee]

Me Time

Jessie left for Alaska yesterday, and Namrata left a few minutes ago to go out on a Friday night-- something the weekend worker like myself is unable to do-- and so, I took some time early today to get ready for bed. I went through my whole skin routine, showered, brushed my teeth, got my stuff ready for work tomorrow, and made myself a cup of tea. With it only being a little bit past 9 pm, and with seemingly no distractions at the moment, I took it upon myself to have a little bit of time to myself to blog and reflect on some stuff. 

I thought today was a day well spent, because it was a good balance between work and leisure. The day before, Jacob actually visited me and we had a really, really good time, it was something I definitely was kind of looking forward to, although I didn’t want to be outright about it. We cuddled, made out, had sex, and then I took him to this arcade bar I wanted to take him to this whole summer, and then went back home where I cooked us dinner and watched the newest episode of Hero Academia. After that, we cuddled and made out more, and fooled around more, until he left around 11:45 pm. 

I really, really missed cuddling and kissing him. I always forget how nice it is, being pressed up against him like that. I think it’s because I hardly ever get to see him, or I’m always so busy with something that I haven’t been able to enjoy the little stuff like that lately. 

So anyway, today. I finally got my first full shift in since I got back in Cleveland this morning. Albeit, it was to be a sitter, but it was still eight hours. Nine hours actually, since the sitter who was supposed to take over for me was late by an hour. The case wasn’t too awful, it was your typical lady who was confused and kept trying to pull out her PICC line and foley. It probably would’ve been more of a nightmare if she didn’t also have her boyfriend or her brother there as double duty surveillance, especially when near the end, she started getting really agitated and kept swatting my hands away whenever I tried to grab her wrists to keep herself from scratching her PICC line out. Coming out of that shift, as you can imagine, combined with Jacob staying late, and having to sit in a confined room for nine hours straight to essentially fight with a woman, I was pretty exhausted. But I managed to drag myself to the gym straight after, and bust out a light workout, officially getting my usual three workouts of the week in, on top of the two days in a row I spent running. I’m hoping to continue the habit to run on the weekends, maybe after tomorrow’s day shift? 

After that, I got dinner at Chipotle with Nick, and it was actually a good time. I’ve come to realize that when I’m Nick and Matt together, they both kind of rub off of each other for the worst, and... not to sound bad, but they kind of act like assholes together. They just act very immature, and it’s something I’ve realized I’ve slowly become not a big fan of. So there’s that, although it was kind of a thought I’ve pushed to the back of my head. But anyway, with it just being Nick and I, we actually had really nice conversation. He asked me if he would still be invited to me and Jacob’s wedding, and how he would act at our wedding, and Matt’s wedding. We talked about him and Jackie, and how he can’t wait to date someone for real, and how the one thing that really psyches him out about getting into a relationship is to just have someone who’s there to just see if you’re okay, or to just check in out of the blue to ask how you are. We talked about how I deeply hope for Jacob to find more motivation and a way to fight his laziness, to find his own, individual drive and to do things for the sake of himself and not for others. We talked about our futures, and what we’re gonna do about nursing in our lives, and how successful our older brothers are. I don’t know, I just really liked it, because it’s one of those rare moments where I felt like I could talk to Nick being genuine and honest, Nick bullshit and antics aside. 

So now here I am in bed, listening to music and blogging. I’m waiting out a little bit until Jacob’s shift is finished so I can text him a little bit before I go to bed. But yeah, there’s my week. 

[ohcrackerjacks]

You don't have to talk about it if it makes you uncomfortable, but why don't you have a belly button? What do the scars look like?

This is a picture from a really long time ago, and the pills are in the way, but there it is, it’s a p big dent. See, back in 2010, I suddenly got hit with Crohn’s Disease, never been sick before or had symptoms, it just attacked me. It was discovered that not a single part of my colon was clear of ulcers, they were everywhere and I was losing a lot of blood (over the course of a six month out of nine period, I had had 9 blood bags and one or two bags of plasma), and losing weight rabidly dropping from 120 to around 105-108. After two weeks in Thomasville, I was transferred to the Children’s Hospital, Scottish Rite and was scheduled for a colonoscopy the next day, for the new doctor to see things for himself. My colon perforated and I was suddenly rushed into emergency surgery, where they removed the entirety of my colon, giving me an external stoma and pouch. After a few days of wound care on my incision, it was discovered I had a serious infection called MRSA, a very deadly infection that could kill if it entered the brain, and it was in my blood stream. They had to reopen my incision all the way through the abdominal cavity and I was stuck with an open wound and a wound vac. After healing for about two or three weeks, I had to learn how to hold my neck up, I was so weak. I had to learn to stand and walk again and it was the worst, most grueling process in my life. I was finally going to be released and the day of my release they removed my PICC line and I went to the bathroom and suddenly blood and puss were gushing out of my wound and I had to remain in the hospital to be treated because the MRSA had returned. After three straight months, give or days a week or a few days, I was finally released after rehab and was showing signs of being able to get around well on my own. My wound was still healing, and to this day it’s numb from where the nerves never grew back. I had to go back in September to have a surgery to create what’s called a J-pouch out of my small intestine so I that I could later have a reconnect surgery and go to the bathroom like any normal person, and what was supposed to be a two week stay, turned into over a month. After finally being released once again, I went home and weeks before my next surgery, my stoma was spitting out almost nothing but acid and I had severe burns and raw skin all around which were extremely painful because that was where my external pouch need to be attached, and we scheduled the surgery for much earlier. After going back to Atlanta, I was given a reconnect surgery and it was the easiest stay by far. As you could guess, I have PTSD and severe anxiety, especially when put in a hospital/doctor situation. Since, I’ve had some small yeast infections in my pouch resulting in “Pouchitis” but it’s never been anything serious. The scar to the left on the picture is where my stoma used to be, the bottom being my open wound where it never completely healed straight, and the center, through my belly button, is how far they had to cut to remove my colon, and I’ve been doing okay for several years. TBH, I don’t know who I would be today if I hadn’t gone through all of this, and really I’m thankful, because I was on the very edge of death multiple times and I was strong enough to push through it and it made me stronger, and for that, even though it sounds crazy, I’m thankful for it.