#and he said this to the radiation oncologist

[consolecadet]

My dad has cancer. He's almost certainly going to be fine -- it's prostate cancer, slow-moving and very curable. I've known for a while, but he posted about it on his much-more-highly-read-than-mine blog today, so I think he's okay with the public knowing now. The way he's dealing with it is so classically his side of the family: learning as much as he can about the science behind the illness and the treatment and finding as much humor as possible in the situation.

I don't know if he realizes how acutely I understand that a joke about how humiliating or awkward something is is still, at its core, an admission of how much that thing hurts. I know he's got an 85% chance of being physically A-OK from prostate cancer after the treatment he's about to undergo, but even if he's zesty as an orange bodily afterward, I worry about his emotional health.

[reasonsforhope]

"Doctors have begun trialling the world’s first mRNA lung cancer vaccine in patients, as experts hailed its “groundbreaking” potential to save thousands of lives.

Lung cancer is the world’s leading cause of cancer death, accounting for about 1.8m deaths every year. Survival rates in those with advanced forms of the disease, where tumours have spread, are particularly poor.

Now experts are testing a new jab that instructs the body to hunt down and kill cancer cells – then prevents them ever coming back. Known as BNT116 and made by BioNTech, the vaccine is designed to treat non-small cell lung cancer (NSCLC), the most common form of the disease.

The phase 1 clinical trial, the first human study of BNT116, has launched across 34 research sites in seven countries: the UK, US, Germany, Hungary, Poland, Spain and Turkey.

The UK has six sites, located in England and Wales, with the first UK patient to receive the vaccine having their initial dose on Tuesday [August 20, 2024].

Overall, about 130 patients – from early-stage before surgery or radiotherapy, to late-stage disease or recurrent cancer – will be enrolled to have the jab alongside immunotherapy. About 20 will be from the UK.

The jab uses messenger RNA (mRNA), similar to Covid-19 vaccines, and works by presenting the immune system with tumour markers from NSCLC to prime the body to fight cancer cells expressing these markers.

The aim is to strengthen a person’s immune response to cancer while leaving healthy cells untouched, unlike chemotherapy.

“We are now entering this very exciting new era of mRNA-based immunotherapy clinical trials to investigate the treatment of lung cancer,” said Prof Siow Ming Lee, a consultant medical oncologist at University College London hospitals NHS foundation trust (UCLH), which is leading the trial in the UK.

“It’s simple to deliver, and you can select specific antigens in the cancer cell, and then you target them. This technology is the next big phase of cancer treatment.”

Janusz Racz, 67, from London, was the first person to have the vaccine in the UK. He was diagnosed in May and soon after started chemotherapy and radiotherapy.

The scientist, who specialises in AI, said his profession inspired him to take part in the trial. “I am a scientist too, and I understand that the progress of science – especially in medicine – lies in people agreeing to be involved in such investigations,” he said...

“And also, I can be a part of the team that can provide proof of concept for this new methodology, and the faster it would be implemented across the world, more people will be saved.”

Racz received six consecutive injections five minutes apart over 30 minutes at the National Institute for Health Research UCLH Clinical Research Facility on Tuesday.

Each jab contained different RNA strands. He will get the vaccine every week for six consecutive weeks, and then every three weeks for 54 weeks.

Lee said: “We hope adding this additional treatment will stop the cancer coming back because a lot of time for lung cancer patients, even after surgery and radiation, it does come back.” ...

“We hope to go on to phase 2, phase 3, and then hope it becomes standard of care worldwide and saves lots of lung cancer patients.”

The Guardian revealed in May that thousands of patients in England were to be fast-tracked into groundbreaking trials of cancer vaccines in a revolutionary world-first NHS “matchmaking” scheme to save lives.

Under the scheme, patients who meet the eligibility criteria will gain access to clinical trials for the vaccines that experts say represent a new dawn in cancer treatment."

-via The Guardian, May 30, 2024

[kickthecan-revolution]

The first person I talked to today in the waiting room was Mark. I met he and his partner yesterday I think? He’s getting radiation for basal cell carcinoma on his face, just six rounds. I mostly talked to his partner yesterday but she wasn’t there today. He asked me a lot of questions about my experience and then I asked a few of my own about his – he used the phrase “mental thought traffic” that I really like. They called him away abruptly, but he came back to say goodbye and to catch my name again. He radiated kindness, that sounds cheesy, but it’s true

The second person was Michael. I got up to use the bathroom and when I came back, he had sat down. The only chair was right next to him, kind of close, but of course we’re all wearing masks so I only worried about it a little. He immediately started talking to me and told me his life story – gay, his partner died years ago, and he adopted his partner’s niece as his daughter. He moved into his parents’ home here in San Francisco after they died, they bought it 50 years ago. He has chestnut brown hair and the most beautiful skin – it was very hard for him to talk, clearly something was going on with his mouth. I was shocked when he told me he was 75- he leaned in and whispered, “it must be the hair dye”. I said no, it’s your beautiful skin! At the dentist, they found tongue, cancer, two months later he broke his hip and had to have another operation, and then two months after that, his oncologist found more cancer in the lymph nodes. I don’t know what his diagnosis is or life expectancy, that’s not a question that you really ask. He talked about how the hip replacement was more vulnerable and frightening than the cancer and he really doesn’t ever want to leave his house but he may have to if he gets older and doesn’t have anyone to take care of him.

He is a historian by profession, and I learned some things about Germany before World War II I had no idea about. I could’ve listened to him for hours, he was fascinating and so lovely and said his first crush was on Hawkeye from MASH / he probably shared that crush with both men and women.

He got called away abruptly and we gave each other a hug goodbye. Then it was my turn, they used a machine where I could watch my breath move from a big circle to a small one and I had to hold it in the small circle as long as they told me to. At first it freaked me out, I know that holding your breath is critical in radiation but then I got competitive with it and wanted to hit the small circle each time.

A few hours after I was done, I had an acupuncture appointment. I did not bet on sitting with my acupuncturist, both of us crying in the darkened office. I feel like my life is so fractured across so many of these kind of strangers that I occasionally feel very close to. It’s surreal.

Nine down, 11 more to go. I am over it, but I think I’m just exhausted and not feeling well from the infusion. It’s all doable.

[aria-ashryver]

I have some... less than groovy news, unfortunately 🌻

Tw: cancer

So, the MRI showed a significant spread of cancer in my brain. Not only are there a number of visible tumors, but the entire lining of my brain is riddled with disease.

I have started radiation treatment already, but for me, unfortunately, it won't be curative. There is just too much cancer.

The radiation I have been getting over the last few days is in the hopes of "slowing the progression" of the disease and "buying me some time". I don't know WHAT kind of time frame I am looking at, because I haven't had further scans to see how well the radiation has worked on me, but one of the doctors did say that "perhaps it's time to start having the tough conversations with your family".

Another doctor said "all we can do now is hope that Dr Okonji (my original oncologist) can come up with another course of treatment".

All this to say: I don't know what the future holds for me. I have to wait 2 weeks to speak to my oncologist, because I have to have a recovery period post-radiation.

Hopefully I'll know more soon, and I'll have better news to share! I am hopeful that Dr Okonji will step up to bat for me again (he's always been absolutely BRILLIANT and resourceful), but honestly, I don't know the science here. I don't know what options there are to treat cancer once it has infected the lining of the brain. Maybe he'll drum up a miracle, or maybe there is nothing to be done. But I'm still fighting this thing as best I can.

Whatever happens, it's all going to be okay 💛💛💛🌻🌻🌻 sorry for the heavy news, my loves

[maudeboggins]

.

last thursday I saw my oncologist and said I was experiencing breathlessness and she said it sounded like anxiety, yesterday I went to the ER for a fever and they x-rayed my lungs and found a spot on them which could be he start of pneumonia or scarring from radiation or anything else really no one can tell. anyway now I am on antibiotics and it was NOT anxiety. getting medical treatment when you have diagnoses of mental conditions is literally so hard and this is not the first time Ive had real symptoms dismissed as "just anxiety" only to have ACTUAL SCANS OF MY PHYSICAL BODY like ultrasounds or x-rays show that there is REALLY SOMETHING THERE. there is sooo much stigma of mental illness even in psychiatry

[contentment-of-cats]

Self-advocacy is exhausting

So, got a call and was asked about my stay after surgery and readmission for the incision infection. Surgery great. Surgeon great. Nurses awesome.

But.

It's noted in my record that I have small, deep veins. Brittle from chemo and radiation, they are prone to collapse. The ER nurse had to use ultrasound to find a capable one. They collapsed when I was on the table which is why I went into surgery with one IV site and came out with three. They were considering a site in my neck. I have begged people to use the power port. It's used for blood draws, it's used for fluids, it's carried my chemo - it's there for a reason.

And the reasons they won't access it are numerous. It doesn't have the flow rate we need. We have to keep it in reserve. It can't handle certain medicines. Finally, one nurse said, "We can't access it without your oncologist's permission."

It was Sunday night and I shot my onco an email detailing my problems - by now five sites collapsed. He spoke to someone about it and next thing I knew it was discharge time Monday afternoon. Why does a patient need to advocate to the point where they're worn down? I look like I've been slamming heroin.

The interviewer seemed perturbed, and referred me to the patient advocate's office. I'll make the call. Just not now. My self-advocacy is on fumes. I need to regroup.

[secretlythepits]

Passenger Seat

This week—

This week—

This week did not go as expected. My husband made choices that last minute excluded me from important oncology appointments. Fine. It’s his choice. But I didn’t call my dentist about a problem I had because I was supposed to be there as a support. I didn’t go to my godson’s wedding across the country because of these appointments. My husband doesn’t quite understand this. I hadn’t wanted him to feel guilty about needing help. The sacrifices I made were cutting but pointless.

His decisions were erratic, fear-based choices. When I tried to get him to slow down and think, he told me not to start.

Because anything that might be emotional, psychological, spiritual, or neurological is off the table.

I didn’t start.

I need to stop.

The mini surge of resentment I felt flooding my body from my toes to my locked jaw puffed my chest with an unintended deep breath.

It’s information, I told myself. Anger is information.

It’s telling me I’ve given too much. Middle age has taught me that I should never give so much that it hurts. Not even in an emergency. Not even to my children. Give only to the point I can freely give up whatever it is being taken. Because, let’s face it, this is not pure generosity. It’s patriarchal expectation and familial obligation— which seems to be always the case for wives and moms. Do we ever choose what we give? Isn’t it just that we made a choice to marry and have kids and then everyone else got to define what that choice entailed?

But I digress.

I gave too much. I allowed myself to be squeezed out of my own life— which he gladly accepted and also expected. But I was never happy to do it. I was willing to give to a point, but then damn, it swallowed me up. Again. Maybe that is always the path of caregiving. Maybe. But maybe I can and should put protections around my vital parts.

Yesterday I was in the bathroom when he announced that he was leaving for the appointment. The appointment that is 10 minutes away from our home, scheduled for 1 hour and 45 minutes later. He wanted to be seen earlier and go to work.

Don’t start.

Things I know that he doesn’t: His pathological restlessness is a fear/trauma response. He is alienating others (or kids) with it and hurting himself. Chemo is affecting his thinking. He wanted to go to this doctor, the one who lied to him, the one who will always say he is ok until he actually dies, for reassurance, to step back into comfy denial again.

Things that failed to take place at this appointment because I wasn’t there: discussing clinical trails (the main oncologist said this doctor was supposed to to research them), discussion sleep medication for his insomnia, accountability for lies about CT results, probing questions about the recent PET scan. All that happened was that my husband waited for an hour and 45 minutes and was told everything looks fine, go ahead with the radiation (which was already decided by the radiation doctor).

I missed my godson’s wedding for this.

(It was a small nature wedding on a Wednesday across the country. I wasn’t expected and to be honest, I try to avoid most weddings, but I wanted to be there for this one. It was too late to book without making myself be a disruption.)

I missed calling the dentist for my pain.

I missed working out for this.

(Didn’t want to sweat before the appointment.)

When I asked about it, he said he didn’t need to talk about anything else with the doctor because radiation was going to take care of it. Actually, radiation will destroy a couple tumors but won’t increase your survival; you need a systemic treatment for that, which is why you were supposed to discuss clinical trails. I don’t remember it that way. Well, both the main oncologist and the radiation oncologist said that, so—

I dropped it and picked up myself. I went on a walk. I realized that it felt like he was the driver of my life right now and he’s drunk. I don’t feel safe. I am so angry. He’s behaving erratically and I don’t want to be stuck in the passenger seat. He won’t give up his keys and I don’t want to have an argument about it. It feels useless because he is drunk and can’t think clearly. I need to get out. That’s my only option. Drive myself.

So, what decisions do I need to make to steer my life in the direction I want it to go?

Basically, I just want to take good care of myself.

The road we are on is long and windy. It’s a closed course so I have to keep going until the end. I need to focus on myself. I need to remember Bolivia and how earlier this year I booked a flight, defied gravity, and created an adventure out of an idea.

But it’s strange.

Imagining a new life, a beautiful life full of so many gorgeous possibilities—

while sleeping next to someone who is coughing and contemplating the loss of his own precious life, the single span he believes in.

This year contains 365 weeks, I swear.

[some1s-sista]

It’s hump day already??? This week is flying by.

Had an appointment with my radiation oncologist yesterday. I don’t need to see him again until January and then we’ll move to a yearly check in. So that I’ll be seeing him in Jan and the surgical oncologist every June and between the two it would be very hard for someone to miss a reoccurrence.

He was very happy with my recovery and very happy with my weight loss. “Tell me what you’re doing!” I think he thought I was going to say Ozempic or Wegovy, but no. I have a huge rack of meds I take everyday as it is. No more meds for me! I told him I’m walking 30 mins every day and keeping my calories below 1200 a day (and admitted I’m not perfect and have cheat days on occasion). But he was super happy with the 31 pounds and said “most women on hormone therapy do not lose weight, they gain.” So I told him it’s definitely coming off slowly cuz the Arimadex wants me to gain, menopause wants me to gain, and building muscles again wants me to gain. And I remind myself of that every time I get discouraged. So he asked what has made me successful this time and I said “Reduce the chance of reoccurrence…maintain a healthy weight. Reduce the chance of problems with lymphedema…maintain a healthy weight. Reduce my blood pressure…maintain a healthy weight. Everything points to that, so that was enough impetus for me.”

Next up, I see my medical oncologist in September. Probably check on my heart and bone density again, and hopefully can finally have my chemo port removed! We’ll see.

[misschf-aisa]

I have an epic tale that is my day yesterday. I think it would be good for me to write it all out as if someone was going to read it, but in a place where it will be lost as soon as I post it. Tumblr is the perfect black hole for this space shot.

I should provide context, but it would only make the story longer and I just don’t have the energy. Okay, maybe a little.

Friday my dad, who is 78, said he’d gotten a voicemail, his oncologist wanted to see him for a checkup at noon Monday. Bad weather was in the forecast for Monday morning, but weathermen are notoriously unreliable so I just said something about if it’s icy you’ll have to reschedule. He was like, of course, and we went about our lives.

Today is Monday and I woke up to a world covered in a good quarter inch of ice. Nothing awful, we didn’t lose power, just enough to make the dog not want to go outside to do her business. (I made her go outside against her wishes, for which I was glared at while she crouched and pooped, but it wasn’t in the house.)

It crossed my mind to check in with dad, but no one would go out in this weather, right? Yeah, you see where this is going.

I got a text around noon. Dad had skidded into a ditch and couldn’t get the car out. Help. I ground my teeth a little, but managed to refrain from texting questions about what the hell he was doing in his car on a day like today. That wouldn’t be helpful, especially after he said it had really scared him. So okay. I glance out the window and my little Fiat is encased in ice. Dad never really fit comfortably in it anyhow. I call my oldest son who just moved to town from Washington state after mustering out of the Navy. He says his 4WD truck is in the garage and he’ll come pick me up.

Oh, I forgot. I have to go because I’m the one with the AAA (thanks @l82theparty) and I’ll need to show them my card before they’ll pull him out of the ditch.

Hey, it would be smart to call AAA now and get the ball rolling since there are probably a shit ton of people in ditches today. So I call dad for a more specific location so I can tell AAA where to find him. He says his GPS just keeps giving him the street number, which is one I don’t recognize. Can he give me a cross street? No. Can he give me a landmark? The route between his house and the doctor’s office is pretty easy to recognize, we’ve done it a thousand times for two rounds of chemo and one round of radiation. No landmarks, just this street number. Okay, we’ll try sharing his location. Nope, that is way too technologically advanced. On the up side it killed time until my son showed up in his truck to collect me.

Some more questions with dad on the phone and we’re still no closer to understanding where he is. So I plug the street into the map just to get an idea and that’s when things begin to go sideways. This street shows up outside of town. Way outside of town. It’s between towns so that I can’t even tell you which little town it’s close to because it’s really just not. We follow the bouncing ball down the highway, past the casino on the outskirts of town, past the toll road, out to a place we’ve never heard of. It took us an hour to get this far, for the record.

I’ve decided my GPS has screwed us so I call dad again, confident we’re going to have to go back into town and comb the streets between the cancer center and dad’s house. But I ask him about the landscape he’s in, and he’s confirming everything sounds right. We drive up and down scary hills covered in ice, then some twisting roads also covered in ice, and Dad is on the phone saying that totally sounds right. To my son’s credit the truck only slipped on these roads a couple of times while he gritted his teeth and complained that he should have put something heavy in the truck bed.

We pass a dead end sign, and Dad doesn’t remember seeing one of those. I’m starting to believe we’re fucked. We pass another sign that says no outlet, and dad doesn’t remember it. My son gives me a look, and I shrug. Then we hit a patch of road that is a skating rink and the kid manages to slide himself onto a patch of grass as we both stare at my father’s car at the bottom of this icy hill in the middle of fucking nowhere. At least we found him, right?

Son and I slip and slide on foot down to the car where dad is fine, he’s got the heater on and the radio, just feels foolish and can’t get out because there’s a tree against the driver’s door. Because, dear reader who has made it this far, he’s not in a ditch. He skidded onto the side of the road where the land drops off into a ravine that was maybe 50 feet deep? I can’t say for sure because when I looked at his front tire and how close it was to the drop off it looked more like the Grand Canyon to me.

Okay dad, we’re not going to touch the car. You’re safe, don’t jostle yourself too much, I’m calling 911 for the first time in my life.

(Why is he in BFE? Oh, sorry, that’s Butt Fucking Egypt if you’re from around here. And I still don’t have an answer for that one.)

Meanwhile I look at the icy incline behind us and tell my son no tow truck is ever going to make it down that hill. A nice young Wagoner County Sheriff’s deputy shows up and his answer is to call a wrecker. I mention that no tow truck is ever going to make it down that hill and he gives me a look so I carefully inched my way back up the hill to sit in my son’s truck and wait.

About 20 minutes later it started to rain. About 30 minutes later it’s raining hard. Still raining hard another half hour or so later when the tow truck arrives on the scene.

Would you believe the tow truck driver said his boss won’t let him take his truck down that hill? He says he wouldn’t leave a person down there though (damn human of him) and the deputy, my son, and the tow truck driver trek down to Save Dad.

I watch from the top of the hill because they don’t need any women down there spouting truths and whatnot and getting in the way. I watch them pop the trunk and get my dad’s walker out. I’m standing in the pouring (so cold) rain watching through a layer of fog that has developed as shadowy figures hunch around the two open doors on the passenger side, I’m assuming they’re figuring out how to get dad out of the car on this side.

I can’t see, so I move over and step into a puddle of ice cold water. It’s not really integral to the story, except I was expecting to be pulling dad out of a suburban drainage ditch so I wore the wrong shoes. My nylon running shoes and my wonderful thick warm socks sucked up that icy water and held it like a lover. It was like the opposite of napalm; instead of fire sticking to my body it was ice cold water.

Meanwhile the boys have come far enough up the hill I can see they have dad sitting on the little bench on the walker and my son is walking backwards pulling it while the deputy and tow truck driver are each pushing a handlebar. My son falls down once, then gets up again. I’m not sure how, but they all manage to get back up that hill and get dad in the truck. It doesn’t matter in the grand scheme of things but now I know exactly how much cold rain is required to saturate my rain resistant coat.

The story ends with my son managing to get the truck turned around and safely off of the ice sheet it was resting on. We’re all home and dry and safe and warm. My girl cooked me dinner and made me a hot toddy and snuggled me in warm clothes and an electric blanket. Dad’s car has probably depleted its battery by now because we were all three sitting in the truck when my son asked if he should try to walk back down and turn off the hazard lights. We left it.

So, how was your day?

[coffeecat1983]

Mario Bros: Thanks for Everything prequel preview.

Yes, I'm still on this idea. Our scene is after Tony collapses and tests are run, a visit to the doctor to find out the results…

The air in the office was suffocating, the walls felt as though they were closing in as Tony stared at the paper in his hands. Beside him, his twin sat with his back hunched, shoulders tight as his fists rested on his knees. "Whadda ya mean, 'you can't do anything'?" Arthur's voice was low with anger. The Oncologist had dealt with angry family members before, but none held the fury that was pouring off of the man across from him. Gathering himself, he motioned to the paper that held the test results. "As I said, it's moved incredibly fast and wrapped down the spinal column. There's no way to surgically remove it, and at this point radiation therapy would only serve to make what life Tony has left miserable. At most we can provide treatments for any pain or discomfort, but beyond that…" he motioned outward, a sign of helplessness. "There's gotta be-" "Art…" the voice was soft but pulled Arthur back instantly. Tony stuffed the paper in his jacket pocket. "I just wanna go home, please." he finished. Giving in, Arthur stood along with him and with an agreement to call the doctor should things change, the twins left. The drive home was quiet, the Lincoln rumbling its low purr as they pulled up in front of the apartment building. Turning off the ignition, Arthur didn't move. Unbuckling, Tony lightly touched his shoulder. "I'm goin' in." "Yeah. Be up in a bit." Arthur muttered. He watched his older brother go inside. Once Tony was out of sight, Arthur broke. His chest heaved as he repeatedly and violently slammed his fists into the edges of the steering wheel, hot tears burning his eyes. The tension in his body burst out as he let out an agonized scream before doubling over, hands clasped over his mouth as he shook with screaming sobs.

[reasonsforhope]

"In a first-ever human clinical trial, an mRNA cancer vaccine developed at the University of Florida successfully reprogrammed patients’ immune systems to fiercely attack glioblastoma, the most aggressive and lethal brain tumor.

The results in four adult patients mirrored those in 10 pet dog patients suffering from brain tumors whose owners approved of their participation.

The discovery represents a potential new way to recruit the immune system to fight treatment-resistant cancers using an iteration of mRNA technology and lipid nanoparticles, similar to COVID-19 vaccines, but with two key differences: use of a patient’s own tumor cells to create a personalized vaccine, and a newly engineered complex delivery mechanism within the vaccine.

“Instead of us injecting single particles, we’re injecting clusters of particles that are wrapping around each other like onions,” said senior author Elias Sayour, M.D., Ph.D., a UF Health pediatric oncologist who pioneered the new vaccine, which like other immunotherapies attempts to “educate” the immune system that a tumor is foreign.

“These clusters alert the immune system in a much more profound way than single particles would.”

Among the most impressive findings was how quickly the new method spurred a vigorous immune-system response to reject the tumor, said Sayour, principal investigator at the University’s RNA Engineering Laboratory and McKnight Brain Institute investigator who led the multi-institution research team.

“In less than 48 hours, we could see these tumors shifting from what we refer to as ‘cold’—very few immune cells, very silenced immune response—to ‘hot,’ very active immune response,” he said.

“That was very surprising given how quick this happened, and what that told us is we were able to activate the early part of the immune system very rapidly against these cancers, and that’s critical to unlock the later effects of the immune response,” he explained in a video (below).

Glioblastoma is among the most devastating diagnoses, with median survival around 15 months. Current standard of care involves surgery, radiation and some combination of chemotherapy.

The new report, published May 1 in the journal Cell, is the culmination of seven years of promising studies, starting in preclinical mouse models.

In the cohort of four patients, genetic material called RNA was extracted from each patient’s own surgically removed tumor, and then messenger RNA (mRNA)—the blueprint of what is inside every cell, including tumor cells—was amplified and wrapped in the newly designed high-tech packaging of biocompatible lipid nanoparticles, to make tumor cells “look” like a dangerous virus when reinjected into the bloodstream to prompt an immune-system response.

The vaccine was personalized to each patient with a goal of getting the most out of their unique immune system...

While too early in the trial to assess the clinical effects of the vaccine, the patients either lived disease-free longer than expected or survived longer than expected. The 10 pet dogs lived a median of 4.5 months, compared with a median survival of 30-60 days typical for dogs with the condition.

The next step, with support from the Food and Drug Administration and the CureSearch for Children’s Cancer foundation, will be an expanded Phase I clinical trial to include up to 24 adult and pediatric patients to validate the findings. Once an optimal and safe dose is confirmed, an estimated 25 children would participate in Phase 2."

-via Good News Network, May 11, 2024

-video via University of Florida Health, May 1, 2024

[kickthecan-revolution]

Big day yesterday. Met with the oncologist and cried during the appointment. Told her about the hard symptoms, including the neuropathy, and she said ok we need to drop the chemo dose for this next round, that can be permanent nerve damage and we want to avoid that. It’s a little better today but it’s in my face as well. I wasn’t going to mention it so I’m glad I told her.

Then met with the plastic surgeon and he said I am a good candidate for a reduction during the lumpectomy and he can take these 36 triple D boobs and make them a small D. When I looked at the pictures, I was shocked. The surgery is going to be intense but I feel like I can do it. Smaller boobs will be less breast material to radiate.

Came home, my friend R is here and she spent the night. We ordered steak and salad and potatoes and watched the DNC. I fell asleep at 9pm.

A week and a half until the last infusion. It’s hard to walk or move much but I’m just so close. As my friend Wendy said “keep your feet on the earth and just keep moving forward. You have to get through it to be done with it.” I did call our People team to know what will happen work wise if I need more treatment and they were helpful. I hope I can have my normal life soon but until then, I’ll love this one as much as I can. And that’s a lot.

[darklydeliciousdesires]

The Dark Passenger - Chapter Fifteen.

I wanted to update this yesterday, but I had to go into hospital to be checked over (don’t worry, I’m fine, just tired as I was there until 12:30am) so here, apologies for it being a little late! Again, 40 notes to unlock the next chapter. Don’t let me down!

Previous chapters - One  Two  Three  Four  Five  Six  Seven  Eight  Nine  Ten  Eleven  Twelve  Thirteen  Fourteen

Words - 3,506 

Warnings - 18+ content throughout, minors DNI!

Tag list - In the comments. Please DM to be added/removed

“Sit, good girl. Spin, good girl! Alright, speak. Yeah, you’re smart as hell. Give paw, yes! Here you go.” Sitting in the afternoon sun two weeks on from his diagnosis, EZ enjoyed the simple pleasure of going through Sally’s tricks repertoire with her, feeding her little mouthfuls of chicken as a reward. With his medication now coursing through his system, he felt clearer headed than he had in a long time, the darkness within him caged off, the beast placated, no longer running rampant through his brain. Gone. All gone.  

Well, except for the dark passenger that remained. The dark passenger he hoped his impending radiotherapy treatment would be successful in shrinking enough for it to be removed via surgery, EZ fresh from his early afternoon appointment with Doctor Ruiz, his oncologist. She was very confident that an aggressive schedule of radiotherapy would see results, but had warned him that because of the fact they were upping the dosage of radiation to as high as safely possible in an attempt to thwart the tumour’s size and progress along with the drugs, he was likely going to feel like hell.  

The course would last for six weeks, his treatments every day for five out of seven days. Because of the fact that he was likely going to succumb to the side effects, and also was forbidden from riding or driving while going through his treatments, he’d put control of the club into Bishop’s capable hands for the duration, his VP vouching that he would run things smoothly, and all he had to concentrate on was getting better.  

Now that he’d actually decided to do so, now that he realised his life was worth fighting for.

That fight, it was less for himself and more for the family who had pleaded with him to reconsider, seeing his father moved to tears, telling him that he couldn’t bury his son, Angel and Bella also tearfully speaking of their love for him, and unwillingness to let him resign himself to something that wasn’t set in stone. Also, the little slither of optimism that if he lived, he could begin putting the wrong things right that he’d had come to him while he was in the hospital was a voice that had eventually grown so loud, he couldn’t ignore it. Dying wasn’t an option at this point.  

Still, though, he was set in his stance over one person in particular, which was a conversation he found himself having with his sister-in-law, watching her pull up in the yard, Sally wiggling with excitement over her arrival, making happy chirruping noises of delight once she saw Bella climb from her car.  

“Go get her!” Letting go of her collar, Sally hurtled over, Bella cooing ‘my sweet baby!’ while bending to lovingly stroke her face and ears. “How the hell you drive in those heels, I’ll never know.”

Bella looked at her feet and back at him. “Natural bloody talent.” Reaching him, she leaned to kiss his cheek, EZ returning the gesture before she sat down at his side. “How’d your appointment go?”

“Not bad,” he said with a slight shrug, Sally settling in at his feet. “They’re starting next Monday, if you’re still alright to take me there and run me back again? I realise you’re busy with writing, so if you can’t then don’t stress, I can get a cab.”

Bella had offered to take him for his treatments, since she had little in the way of physical commitments other than her twice weekly meets with the band to brainstorm and rehearse their new material. “Of course, it’s alright, you daft lump!” She nudged him with affection, stroking his forearm. It was lovely to have the brother-in-law she remembered back again, but Christ, it was at such a cost. “What time do we have to be there?”  

“8am. I know it’s quite early, but at least it gets it out of the way and means you’re free for the rest of the day then.”  

“Oh, your brother is going to be so pissed off. That’s his horny time,” she chuckled, EZ arching an eyebrow.  

“Surely with Angel, that’s any time he has sex on offer?”

Her snort laugh had him smiling in an instant. “Yeah, I suppose that’s true!”

“So, how’s your day been? And shit, how’d you get that? Looks sore.” Pointing to the bruise he could see forming on her inner elbow, he winced a little.  

“I’ve been taking pole dancing classes with Camille. She doesn’t charge me, and I get to do it in an environment where I don’t feel embarrassed by my thoroughbred knees, like I would in a room full of other people, so Amelia and I go to her house twice weekly around her work. She isn’t in today, so we had a morning session and then went for lunch.”

At hearing his ex’s name, his heart jumped sadly in his chest. “How is she?”

Pulling her cigarettes out, Bella lit up before replying. “I ain’t gonna sugar coat it, mate. She’s sad without you.”  

His response had left the tip of his tongue before he could process it, delivered on a soft snort. “She shouldn’t be.”

“Well, she bloody is,” Bella affirmed, trying not to be too abrupt in tone, failing somewhat. At least now she knew she wouldn’t get her head bitten off for it, being able to relax a little and not have to watch what she said, or be cautious of the tone of her delivery, save antagonising him. “Sorry, I didn’t mean to snap, but she’s so in love with you. All she wants is for you to go back to her.”

“Bella, I can’t.” He dropped his head, looking down to where his fingers stroked swirls into Sally’s coat. “I lied to her, I cheated on her, I hit her, and I manipulated her. I know it wasn’t me, but I still did it. I don’t deserve someone as pure and beautiful as she is. I don’t. I’m not worthy of her.”  

Cocking her head until she caught his eye, she rested her hand on his forearm. “Don’t you think that’s for Camille to decide? Tell her your truth, and then let her be the judge of whether she wants to be with you.”  

He saw that there was a certain amount of sense to her words, her reasoning quite fair, but he remained resolute. “Can’t do it. Because if it is a worst-case scenario – and I’m not saying it definitely will be – but if it is, I don’t want to cause her any further pain. She’s too good for it.”

She nodded, but couldn’t help but offer another little nugget over her friend’s current state of mind regarding him. “She’s in pain already, EZ. Being without you.” Seeing her husband turning the corner in approach, she squeezed his shoulder before getting up, meeting Angel halfway with a kiss, while EZ felt like he’d just received a particularly acute punch to the gut. He could have done without hearing that, but held no grudge against Bella for revealing it. Being his family, but also friends with Camille, he could see she was trying to be loyal to them both.

While he sat in quiet contemplation, Angel and Bella headed out for lunch together, the topic of discussion eventually landing on what she and EZ had been speaking of.

“Well, I think he’s insane, having a sweet, gorgeous chick like that still wanting to be with him, but that’s EZ all over. He fucks shit up and then acts like one of those, what do they call them…” Trailing off, he snapped his fingers, frowning with concentration. “Those dudes who like pain inflicted on ‘em.”

“A masochist?” Bella offered, spearing a cherry tomato from her plentiful salad with her fork.

He clicked his fingers again, pointing at her. “Yeah, that’s it. Thank you for being the thinking part of my brain when it’s being slow-moving, my darling.”

“Hey, that’s my husband you’re bad mouthing,” she spoke through a mouthful of tomato and spinach.

“I know I ain’t the sharpest knife in the damned drawer at times, B. Besides, nobody has it all, and I got the gorgeous face, the hot body and the hella big dick, so I ain’t too pressed.”

She snorted on giggle, winking and sipping her wine. “Yes, you absolutely do, big sexy. I’m adamant in my stance that you’re smarter than you think.” Leaning across the table, she gave him a kiss, stealing one of his fries and receiving a slapped hand for it, Angel muttering something about her never ordering them as a side but always happy to steal his. “Anyway, we were talking about EZ and Camille.”

“We were,” he began, glaring when she stole another fry. “God damnit, woman! Quit it!”

“What? It was only two!”

Catching the eye of a passing server, he beckoned her over. “Can we get a side of fries here, please? Before I take my wife and throw her into that little fountain you guys have out front.”  

The server looked entertained, Bella poking her tongue out at Angel. “Sure, sir. Regular or truffe?”

“Ooooh! Truffle, please!” she confirmed, Angel exclaiming in annoyance further.

“And now I can’t steal any back because truffle tastes like burned plastic!”

She giggled, sipping her drink again. “So, back to EZ and Camille. I think he’s mental too, to be fair. I mean I get that he’s going through a hell of a lot, I honestly do, but having her there for him, supporting him while he goes through it, I can’t see why he’d turn that down, why – as you put it – he's being somewhat masochistic about it all and punishing himself for something he couldn’t help.”

“Because he thinks it’d be selfish, and he’s been like that enough towards her as it is.”  

Bella pursed her lips a little, nodding slowly. “Yep, you’re right. Thinking on it, that’s exactly what he’s doing. I wish he wasn’t, though. For his sake and hers.”  

Angel shrugged, resting his hand atop hers. “No matter how crazy we think he is, I guess we just gotta respect what he wants. Even though he’s hella wrong.”  

The four days between then and EZ’s treatment beginning seemed to pass by in a blur, until the night before was upon him, EZ taking Sally for a two hour walk before returning to an empty clubhouse, figuring the guys likely thought he needed the peace and quiet of his own company, leaving the space vacant.  

The truth was, he was looking for any distraction he could. He was nervous. Who wouldn’t be at the prospect of having something that - in greater, less contained doses, of course - killed people, burning their skin and internal organs, and left entire cities poisoned and inhabitable when unstably released into the atmosphere.  

And it was being beamed into his brain, almost every day, for a month and a half.  

“So long as it shrinks the fucking thing, I suppose.” he muttered while scrolling through the menu of the local pizza shop, before remembering that his buddy Horace had recently branched out into deliveries. Oxtail, rice and peas and hard food it was. With a side of festival. He was starving. It was surprising he had an appetite at all, but then reasoned he hadn’t for most of the day, only fuelled by coffee and the few swigs of apple juice he’d had, plus a handful of almonds.  

“Might as well eat while you still feel like doing that.” Loss of appetite had been noted as one of the possible side effects, and if not that, then he knew the most common, the nausea and vomiting would likely mean that sustenance would fall to the bottom of his priorities list. Well, at least it wouldn’t hit him at once. Doctor Ruiz had advised it would likely begin to affect him after the second or third week.  

When the morning came, he was remarkably calm, leaving Sally sleeping on his bed and heading outside the yard to meet Bella, who was a few minutes early. Getting the first treatment over and done with was the easy part, he found, the nurses all lovely, the radiographer absolutely hilarious, setting him at ease with his infectious laugh and similar humour.  

“So, you got your music for me?” he asked, EZ pulling his cell out. He was told that he could make a playlist that the radiography team could play while he was undergoing treatment, Doctor DiMarco taking his phone from him and snort laughing at the name of the folder.  

“Chernobyl tunes,” he hissed. “Oh my lord, you’re a funny one, Ezekiel. Okay, you just lie there and get comfortable, a nurse will be in shortly with the mask you’ll have to wear for the duration of the treatment to keep your head nice and still, and off we go, my friend.”

Lying back on the table, EZ felt quite composed, giving the nurse a big smile when she came in, fitting him with the netted looking mask, EZ still being able to see through the thousands of tiny holes within it, being told that the treatment would begin momentarily before she left the room. Hearing the opening bars of the song Protection by Massive Attack filtering through the speakers, EZ closed his eyes as the machine above him began to hum.  

He’d chosen that song because prior to his relationship with Camille, he’d never heard of the band, but spent many evenings lying in her bed listening to them as they talked, EZ now wishing with everything he had that those moments had been more genuine from his perspective. She truly was wonderful.  

A few more minutes passed as he continued to think of her, a realisation hitting him; those moments, even steeped in the fact they’d come from a dark place, they must have been more genuine, for him to be sitting there drawing comfort from them now, remembering lying with his head in her lap as she’d stroked his hair, laughing at something he’d said, listening intently to him, being her wonderful, beautiful self.  

Maybe it was why it hurt so damned much now he had chosen to be without her, because while his intent hadn’t always been genuine, his love for her very much had been.  

Now he could separate between his true self and the changes that were because of his dark passenger, it made it worse in a way for him, to know just what it had demanded of him. If he could press a knife into his own head and cut the damned thing out himself, he would. He’d bleed rivers of blood for it to be gone, for it never have hampered him in the first place, to have never hurt Camille as badly as he had. It was a regret he knew he’d live with for a long time, or at least until he got over her, what he’d done to her, too. He was still emphatic about them not getting back together.  

The first two weeks of his treatment went by smoothly, everything fine until he hit the tail end of the third, the fatigue suddenly smacking into him like an out-of-control truck.

“EZ?” A hand gently shook his shoulder, waking him with a start. Turning, he saw Bishop, casting his eyes upwards as they sat together in the clubhouse. “Go to bed, hermano. You need rest.”  

He nodded, getting up and stretching, Biship giving his arm a supportive squeeze. “We got everything handled, don’t worry.” They’d been having an informal chat about how things currently lay with their endeavours, EZ trying hard to remain awake, and failing miserably. He trudged upstairs, stripping down to his boxers and flopping onto the bed, asleep within moments. He managed three hours, until the churning in his stomach awoke him, running to the bathroom to expel the contents into the toilet bowl.  

It was like that for the rest of the night, turning him into a zombie with a raging headache by morning.  

“It isn’t like it could hit me in waves, oh, fuck no. It had to all come at once, like bam, let’s fuck him up,” he complained mildly with laughter as he sat with Nestor the next morning, just him and a few of the girls who worked the bar there, the latter taking in the alcohol delivery, while he and the former drank coffee at a table.  

Nestor raised his eyebrows, shaking his head. “I’m surprised you’re even out of bed, jeffe. I’d be burrowed in my pit if I were going through all of this.”  

He shrugged lightly, scratching his jaw. “Eh, I might go back up in a minute. I... I...” Suddenly, he felt strange, like something was slipping from him, his vision blurring, the last thing he was aware of being Nestor racing out of his seat, catching him as he toppled from his chair. Dark... strange sounds, Nestor’s voice... the taste of blood...  

“Hey, you back with me?” He attempted to focus, Nestor gently pulling his hand from beneath his head. “Seizure.”  

He’d been told he might suffer those more too, the pressure from the swelling upon his brain upping the risk, especially since he’d begun having them as a result of the tumour prior to the treatment beginning. He guessed he needed to let his doctor know, so they could up the medication he was on to prevent them. His oncologist had warned that they might need to re-examine the dosage, should the seizures begin again during the radiotherapy course.  

“Yeah, yeah I am,” he confirmed, rubbing his eyes, still feeling a little dazed, the side of his tongue sore, realising he’d bitten it in the throes of the convulsions. “Thanks for catching me.”

Nestor helped him to his feet, bracing a hand between his shoulders. “No problem.” He went back up to bed shortly after, managing to get a little more sleep, until the nausea awoke him. It was like that for another week, EZ worsening the further he went into his therapy, his anti-nausea meds only actually working if he could keep them down long enough for them to get into his system. More often than not, he couldn’t.  

Week four was agony, his headaches chronic, his mood low and irritable, being left alone for the most part, only his brother coming to regularly check on him, sleeping on the sofa some nights when he was really bad, just so he had someone there with him. Along with not being able to keep the anti-nausea drugs down, the same went for the whole other barrage of pills he had to swallow, including the drugs which assisted with controlling his seizures, Angel terrified he might collapse and hurt himself, swallow his tongue, anything.  

Eventually, he managed to map his sickness, knowing that early morning was a good time to be able to keep something in, so taking the pills he could on an empty stomach. The doses he took later in the day after food, though, when his nausea was rampant, usually didn’t last long enough to take effect. He was tired, he was sick to his stomach, his head continuously pounded in pain, he ran on little sleep, and everything was just too much.  

“Hey, oh, love. You look so poorly,” Bella cooed softly, stroking his shaven head as she sat down on his bed, EZ curled into a ball, feeling like death. Once the radiation had affected his hair, meaning it had begun to fall out in patches, he’d decided to do away with it completely, shaving his head clean, his facial hair remaining intact save for a little patch beneath his chin. “Is there anything I can do for you, anything you need?” she asked. He looked delirious with exhaustion and pain, yet the word EZ croaked as he lay there was clear as a bell.  

“Camille.”  

He managed to fall asleep with Bella lovingly stroking his head, but when he woke up, it was the hand of another who offered such affection, turning onto his back and opening his eyes to see her there, returned to his side.  

“Hey sleepy,” she whispered, EZ feeling tears pool in his eyes, tears of fatigue, of gratitude, of love, of remorse.  

“I’m sorry,” he croaked, Camille stroking his head, shushing him softly.  

“So am I.” Leaning to him, she kissed his cheek, her scent so comforting, the zesty notes of her perfume mixed with gardenia filling his nose. “I’m sorry you didn’t ask for me sooner, so I could have been here for you. At least I’m here now, and I’m not going anywhere.”

He nodded weakly, turning to push himself into her arms. “Thank god.”  

There was much, much more he needed to say to her, but at that moment, all he needed, all they both needed, was the comfort of being reunited. Anything else could wait.  

[golbrocklovely]

As some who is very aware of cancer (3 of 4 grandparents and both parents either have or had cancer) I want to remind everyone that even if they choose to do chemo or radiation, that doesn’t mean it is because it has spread or is still active. They often choose to follow up with a treatment purely for preventative measures. The one “good” thing about testicular cancer is that it is isolated in the testicle which means it won’t spread as quickly until it has spread into the bloodstream. They caught it early and he is probably going to be totally fine. If they choose to follow up with other treatment, does not mean he is going to die. We need to remain positive and have faith in the oncologists. Not all chemo is the same either, so depending on the blend of drugs they use he may not have as rough a go. He might still have a hell of a time, but there are also chemo blends that are relatively easy to manage. My one coworker would go for treatment and come to work right after with no issues except minor fatigue. Trust that he will be okay. We just have to love and support him as much as possible.

i totally agree with you. when my dad was going thru treatments, i know the doctors asked him if he wanted to do another round of chemo even tho all of the cancer had been removed and wasn't growing back. so he considered it, but decided against it. granted, about a year and half later it all came back again and twice as strong as before.

but my dad had also held off on going for so long even tho he had stomach pains for for years and he was also in his late 50s and not the healthiest. so, there's a lot of differences between him and colby lol

but that being said, the first time around my dad did chemo, he lost no hair and was at most just tired. he was in really good spirits too. so, hopefully if colby has to go thru chemo or radiation, it's a less painful one and works hard as hell. the slight positive is that (assumingly) colby is overall a really healthy person so that will work in his favor either way.

i just pray that this all works out for him and he doesn't have to worry about this anymore. this is just such a hard thing to see someone i love go thru. and i hope all of us send him as much love as possible.

[contentment-of-cats]

Medical reality check

Sometimes I feel as if the time since February 2022 has been a long, strange bad dream. Mom's decline into severe dementia came at the same time I was diagnosed with cancer, with her coming off the rails at the same time I was hospitalized and given the nephrostomy. I met with my oncologist yesterday, and I got a big check.

"I'm sorry that she's gone, but maybe now you can fully focus on your own health."

Having my focus all for myself. There's a concept.

85 percent of the people diagnosed with my type of CRC at stage T4a die. I am one of fifteen percent who survived treatment and surgery and achieved remission. Roughly half of those who start treatment at that stage do not make it to surgery, the stats are worse for those who have to have the resection before chemo and radiation. It is also very likely that this cancer will recur and/or metastasize. As a friend said, I am on the measured mile. It's terrifying, but also freeing.

Doc also said that when I talk about not bouncing back, not getting better as fast as I want, that they treated me with the most aggressive radiochemotherapy and a second round of 5-FU or FOLFOX-5 (called by chemo buddies 'the five fuck yous'). He reminded me that most people could not survive the treatment. He reminded me that I have time and to cherish it. To think about whether I am trying to heal for myself, or to please others. To internalize that I am on pain meds to ease the pain from damage left by my treatment, and that the pressure to get off them and 'be better' is a medical decision - not one that needs to be decided by people who think I shouldn't take oxycodone for pain that can hit a seven or eight on a bad day.

10 is the pain I woke up with after the big surgery in November 22. I woke up screaming. I was on 10mg of oxycodone every four hours for six weeks.I am now on 5mg every eight-twelve hours. I may be taking these along with robaxin and gabapentin for the rest of my life.

For my test results, my white cells are all normal or low normals. I may not rebound since these levels have been steady since the end of December, and will have to take greater care to avoid getting sick. I will get sicker, and stay sick longer. My Carcinoembryonic Antigen test shows me to be under the value that would indicate something starting up. My Natera test ought to be back by mid-next week.

Focusing on my health for the measured mile.

[secretlythepits]

Coffee and Oncology

If you haven’t been around cancer, let me tell you, you can judge how serious your situation is by the coffee availability. Regular doctors don’t have coffee machines for patients, but once you’re in the cancer world, they do. When you’re waiting in general areas, like where patients go for labs, the coffee machines are hit and miss. Generic pods. Lipton tea. Expect powdered creamer. On a good day you might find a packet of cocoa, but not two so the caregiver gives it to the patient who takes it but only drinks a sip.

The radiation waiting room has fancy coffee pods. You can choose your roast or a delightful tea. The creamer is liquid.

The specialist oncologist’s waiting room has top notch coffee, your choice of creamer and a variety of brews. All specialty.

The new oncologist literally has a Starbucks coffee machine. Choose your roast; it freshly grinds it for you. Or press the button for a steamy chai latte. It was glorious coffee and it will be mine every three weeks for who knows how long.

I always get a coffee, because first of all I am an accepter of beverages. I always say yes. But also, I feel like I deserve a little treat on these crap days and it’s nice to sip something and not have to pack and clean a travel mug. Another cancer luxury: free valet parking.

Ah, the perks of malignancy!

I like the new oncologist. He is my favorite so far and my husband loves him too. He is extremely careful with his words. He wants patients to feel hopeful and positive. It would be easy to gloss over his painstakingly choreographed phrasing and forget anything is wrong. This is good for my husband. My legal eagle brain, trained on 2 decades of Law and Order, noticed the sidesteps and avoidance of promises. I notice how he said “some” patients instead of most, or all, or you.

The doctor met with me privately afterwards, at his suggestion and with my husband’s permission, to answer the more realistic caregiver concerns. I like that he prioritizes the mental well-being of his patient. It is very hard to ask direct questions when the answers would be painful to my husband. I got the distinct impression that he likes to drip information. I told him it’s hard to tell my husband he needs to get financial matters in order because he takes it as a blow of negativity, so his doctor told me that he would talk to him at the next appointment. Such a load off my shoulders. He also told me that he doesn’t push treatment once quality of life is compromised. Another relief. I left the appointment feeling freer. A wonderful surprise.

So now it’s what I expected: immunotherapy with or without a gentler chemo (depending on labs). We just see if it works in a few months. Then we see how long it works and we hope the adverse effects don’t make treatment infeasible. Most likely, this treatment will be much less horrific and painful than the first time around, and the schedule seems doable. I think the next few months should be pretty even keel.

All of this is for now.

Drip.

Drip.

Drip.

This coffee is too damn good.