#or spinal chemo

[portablechemist]

my partner and I got our covid boosters yesterday, and while I felt kinda crappy today, it's nowhere NEAR how shitty I've felt over this last year. last time I got a covid + flu shot, it knocked me on my ass for like 36 hours. just kinda made me realize how shitty some of the stuff I've gone through this year really was. it's totally possible that this one just... wasn't as bad, but I think it's totally fair to say that chemo (and everything after it) really sucks ass. to the point where I was like, "oh, those shots didn't hurt at all."

does make me think that I could totally handle getting a tattoo now...

[rosebramblewolf]

congratulations to my asshole on farting w/o sharting for the first time in one (1) week gd bless

[briarpatch-kids]

Another thing people don't realize about physical disability is that we're often restricted by location as well. I want to live in the woods but like... nobody is gonna drive 2+ hours each way from the city to shower me a couple times a week. I'm restricted to places that have home health services which is not that bad considering what other people go through.

I know someone who had their mom move an entire state over so she could get chemo because it wasn't available where they lived whole family had to pack up and move. Someone else had to move countries to get ongoing treatment for his spinal disease. Transplant patients have to live in expensive population centers while they wait in line for an organ because they MUST be within a certain travel distance from the hospital. Some people can't ever leave the hospital.

[skippyv20]

Our Prayer List🙏🏻❤️❤️❤️❤️❤️❤️

Prayers and good thoughts for Princess Anne. We pray for quick recovery and quick healing.

Prayers and good thoughts for our friend’s mother who is in the hospital fighting an infection. Also, for our friend who is going through a difficult time.

Prayers and good thoughts for @sandiedog3’s good friends, Darren and Kim. They are mourning the loss of their brother Simon. He was only in his forties and he spent that last decade nursing his much older partner with leukemia and dementia and now he has died suddenly bless him.

Prayers and good thoughts for Kylee who is missing. It has been months since her mother and grandmother have heard from her. Today is Kylee’s 18th Birthday. We pray Kylee is safe. We pray for her mother and grandmother as they are so worried. (This will remain until we hear Kylee is home safe and sound) June 15

Prayers and good thoughts for our friend’s 22 year old nephew who is struggling with anxiety, depression & panic attacks.

Prayers and good thoughts for The Princess of Wales as she continues her battle. We pray for The Prince of Wales and their children, and Catherine’s family during this time.

Prayers and good thoughts for our friend’s mother. She is battling gall bladder and liver cancer and had an ischemia that obligedi the surgeons to remove 70% of her intestine. She will have to live with a colostomy bag permanently. The doctors are waiting for her to be strong enough to submit her to chemo and immunotherapy to reduce the liver tumors. She is still young (78 years old) and also because she spent her life taking care of her children and their father who now has Alzheimer's

Prayers and good thoughts for our friend who is suffering from ringing in her ear. It is constant and she can’t sleep. Neither her doctor or dentist can find the cause.

Prayers and good thoughts for our friend’s husband who is in the hospital with a blockage, he’s been there for 2 days, and his wife is hoping he’ll come home on Monday. She will has had her surgery and is in terrible pain. Her husband is losing his job at the end of June, and her heart doctor said to be prepared for heart surgery once she heals from her foot surgery. She has a leaky aorta valve.

Prayers and good thought for our friend’s brother who was just diagnosed with terminal stomach cancer, secondaries in his liver and lungs. We pray for our friend and her sister to have their trip go smoothly as they plan their trip to be with their beloved brother. Also, we pray that their brother will be pain free and that he will be at peace.

Prayers and good thoughts for our friend’s BIL who has passed away. Praying for his family.

Prayers and good thoughts for my cousin’s 3 yr old granddaughter Maize who is battling cancer.

Prayers and good thoughts for our friend’s mother who is feeling a bit confused at this time.

Prayers and good thoughts for our friend who is having suicidal thoughts, and having difficulty finding employment. Praying she finds employment soon.

Prayers and good thoughts for our friend’s son and husband. Her son has spinal fractures and they don’t know why. Her husband is having issues with his back as well. Prayers and good thoughts for our friend’s husband who has just had surgery. We are praying for good results, and quick healing. May 8

Prayers and good thoughts for our friend who still suffers from effects of having Covid 19, and struggles. May 3

Prayers and good thoughts for our friend whose husband had a mental breakdown and they are now facing financial hardship. He is bidding on numerous jobs and needs prayers.

Prayers and good thoughts for our friend’s niece who is five months pregnant. She fell and hurt her hands and knees, to protect the baby. She is only 22 and having severe migraines

Prayers and good thoughts for our friend who is caregiver to her husband. Praying for them both. Praying for her to have extra stamina as caring for a loved one is so hard both physically and emotionally. Apr 10

Prayers and good thoughts for our friend’s oldest daughter. Her daughter is on dialysis now. She did test positive for drugs, and her boyfriend is a known drug dealer. This is of great concern. Mar 27

Prayers and good thoughts for our friend who is mourning the loss of her beloved father.

Prayers and good thoughts for our friend who is trying to find the right maintenance dose of medication. Without it she is susceptible to many different illnesses. We pray this appt brings good results. Also, prayers for her mother who is still recovering from surgery. Mar 24

Prayers and good thoughts for our friend’s FIL who has been diagnosed with cancer. Still waiting on results as to what type of cancer. He has been diagnosed with stage 4 cancer. Mar 11

Prayers and good thoughts for our friend’s treasured son-in-law. He has been diagnosed with esophageal cancer with mets to the liver and lymph nodes throughout his abdomen. He has a very poor prognosis - less than a year, probably just a few months. He is only 48 years old. Our friend is heartbroken, her son-in-law has been in the family for 17 yrs, and he is so very loved. He is scheduled for a PET scan next week. Mar 05

Prayers and good thoughts for our friend’s husband who will be having surgery. The waiting list is one month long. Also prayers for our friend to feel God’s loving presence during this trial she and her husband are facing. Feb 26

Prayers and good thoughts for our friend’s nephew who is struggling. Feb 11

Prayers and good thoughts for our friend who needs to have re-surgery to repair her broken femur bone, which has not fused. She was told that it was surgery failure the first time, and she would have to travel to back to Singapore to have the re-surgery done. Feb 5

Prayers and good thoughts for our friend’s nephew who has been diagnosed with rheumatoid arthritis. Feb 3

We pray for our friend who for 36 years has suffered from a progressive, painful, debilitating neurological illness that has her housebound, and she is tired.  Jan 19

We pray for Princess of Wales as she recovers after major surgery. We pray for her recovery to be quick and without any issues. We pray for Prince of Wales and children as they go through this trial as a family. Jan 17

We pray and send good thoughts for our friend and her daughter who is going through some things. Jan9

We pray and send good thoughts for one of our Tumblr friends who has stepped away and we await her return. Jan6

[watchinglikeafangirl]

I'm falling for Queen of Tears, I'm crushing so hard on Hyun-Woo. He is such a sweet husband in moments when he just acts without thinking about their situation. The story develops into a very different direction than I thought and I love it so far. I like how we can see there's history between them. They actually feel like a married couple and I feel like they really were in love but things happened and just like other marriages sometimes do, they fell apart over a miscarriage. They grieved differently, they lost touch, they felt like strangers so suddenly and stayed strangers ever since. It hurts but it's still visible how they still kind of believe in their marriage. Especially Hae-in, she's not confident about their relationship but she is confident about their marriage and I like how the show differs between the two and I like how these two still feel like they belong somewhere with the other even if it's awkward. And when she asks if he would come with her to get treatment, he says he obviously will which shows how entitled they still are. Yes, in the end, she went there alone but that's a slightly different thing because he didn't know she was leaving.

Also the scene at Sanssouci is just beautiful. I cannot say how much it touches my heart to see them stand in front of each other and just cry. And what do you mean he brought her sneakers all the way? What do you mean there's a kissing scene with the sunset? What do you mean he drew her a new lifeline since hers was too short? I'm whipped.

The scenes of her getting the treatment, how lonely, desperate and how much pain she bears, it got to me. Having had my own portion if chemo (healed ever since, it's been 18 years), and even though I was really small and young when it happened, I relate on a very different level. I know how scary it is to be surrounded by so many clinical rooms, how they puncture the spinal cord, how it feels hopeless. But it's all here in this show and I like how it's not overly dramatic. It's just how it is and it's not nice to receive treatment of any kind on that medical level. I just like how it's shown and how the show deals with it.

[houseofbrat]

So what you want Kate to not get chemotherapy so that she gets even more worse and more unwell? Who even thinks like that and William doesn’t smoke

First off, it's well known that William smokes. Just because he hides it better than Harry doesn't mean he doesn't do it. He clearly has smoker skin. That's why his skin looks so terrible & dry. So dry that soon we might be able to grate cheese on it.

"You want Kate to not get chemotherapy so that she gets even more worse and more unwell?"

Your ignorance is clearly showing.

This is how people die from cancer:

Catabolism: the body breaks down on a cellular level; substances released by tumor cells are strong anorexics.

Secondary infection due to immune system suppression.

Blockage of vital structures: trachea/esophagus, superior vena cava (SVC) syndrome, impacts to the spinal cord, pericardial effusion, pleural effusion, etc.

Side effects of medication/treatment: immune suppression, pulmonary fibrosis, Graft-versus-Host-Disease (GvHD), etc.

You do not die from cancer just because you have "cancer."

I wrote a long post yesterday differentiating that different people have different physiology. Just because you have "cancer" does not mean that it poses a threat to your life or health. Plenty of people have "cancer" that does not progress at all or affect them in any way. Just because you have "cancer present" does not mean it will affect your life or health in any significant way.

The situation is really like the anon said:

"Catherine has a much more serious cancer than they are letting on, hence, the decision to have chemo is not even a discussion point,"

"she’s not having chemo and there’s another reason why she’s missing in action,"

"she and William are panicking and she’s receiving chemo regardless"

My bets are on numbers two or three.

Kensington Palace is clearly lying. Can't wait for it to be revealed! KP's strategy before Kate's cancer announcement was to release the news that her medical records had been breached and paint Kate as a victim. After the cancer announcement, it was those pesky conspiracy theorists and the axis of evil who was to blame for Kate's reputation being slagged around the world, not the utter incompetence of William and KP.

Let's not forget that William is an emotionally damaged, thin skinned, control freak with a privacy fetish.

Let's also not forget that next Monday, 01 April 2024, begins a new fiscal year for the BRF.

[vcr-wolfe]

birthday time + updates

eeeuuueei i am ever older. i was never one for birthday parties of any sort but we made it this far

i have an update on mas cancer situation, its pretty good. in her last pet scan they werent finding much in the way. theyd been giving chemo both by infusion and thru spinal fluid which has been working. theyre going to finish the current course of chemo and see where to go next

hmm thats all. i do not have any updates on My health situation. i am still treading water here. all i can do is wait while they monitor

[squirrellypoo]

I will be your blood loss consultant

Hey IWTV fic writers - want to ensure your character's blood loss feels realistic? Got a situation where a petit coup has gone too far, or a character got gravely injured? I've got a unique perspective to offer to the fandom - I've lived for extended periods of time with extremely low blood counts* and I'm happy for you to send me WIP snippets or to ask for advice on blood loss storylines.

To break it down a bit further, from my experience, how being low on the different types of blood feels/affects you:

Red blood cells - Red blood cells carry oxygen around the body, so if you're low on these, you're effectively low on oxygen in the blood. This is the most obvious, but you feel really sluggish, tired, and will be breathing heavily at the slightest physical exertion. Physically, it kinda feels like you're moving underwater, and your limbs feel heavy, and even short walks feel hard. (I went from running 10km 3x a week to getting out of breath just walking up stairs, for example). Cognition is fine, but frequent naps are a requirement.

Platelets - Platelets are what allow your blood to clot and heal cuts, so a lack of these means you bleed and bleed for a long time. But also you bruise super easily, and bruises last a really long time (weeks/months). You can also have spontaneous burst blood vessels in the whites of your eyes. Parts of your body that wouldn't normally bleed also do - like waking up to blood on the pillow because your gums bled overnight. The most unexpected part for me was having a constant background rushing sound in my ears - kinda like holding a seashell up, but all the time (until a transfusion).

White blood cells / neutrophils - A lack of these doesn't make you feel that different, tbh, but a lack of WBC means you can't fight off viruses so you pick up every single cough and cold, and have it for twice as long as normal people. A lack of neutrophils means you can't fight off bacteria, so your body's normal bacterial cohabitors cause problems that can really mess you up. So you've got to be insanely conscientious about what you eat (no runny eggs, unpasteurised cheeses, raw vegetables!), and brush your teeth and mouthwash after you ingest anything. You'll really only need to worry about these symptoms though if you've got low blood levels for an extended period of time (several weeks+).

Overall though, I've described the extreme examples. If your character is young and healthy, they will probably only experience the red blood loss symptoms (and possibly minor platelet symptoms) for a few days, depending on how much blood was lost. If they're in a situation where a hospital would give transfusions, be aware that you'll only ever be given enough to get you out of the dangerously low territory, never so much that you'd be "back to normal" counts after the transfusion(s). But transfusions do make you feel better almost instantly (better, but not good).

But again, feel free to message me with any specific questions (I can also tell you how chemo, meningitis, spinal taps, surgery w/o anaesthetic feels if that's of use!), I'm happy to talk about all this and I want to give back to this fandom and IWTV fanfic writers in particular to say thanks for the hundreds of hours of enjoyment you all have given me!

* I'm absolutely fine now! Over my lifetime, though, I've survived off the blood of literally hundreds of people. A bone marrow transplant saved my life 14 years ago and I run marathons now and am probably healthier than most 40-somethings, except I'm still Clinically Extremely Vulnerable to Covid and can't go into crowded places or unmask indoors. But my bloods have been fine for over a decade and this is in no way traumatic for me to talk about!

Please consider joining your country's bone marrow donor registry and/or donating blood regularly if you're able to! Both saved my life.

[nochiquinn]

Sam's numbers came back good! In fact they came back as zero! Her preliminary surface-level spinal fluid and bone marrow tests came back with NO leukemia cells! Exclamation points!

She's officially in the physical rehab place and will be there for two weeks getting her strength back. (She can wear real clothes again!) If she's able to get back to baseline she gets to come HOME and just do clinic visits for the rest of her chemo. (While her basic tests came back clean, there's always a chance of a sneaky cell hiding somewhere waiting to replicate, so additional chemo is just to nuke whatever might still be in there.) There's also a chance this means no stem cell treatment, so that's good too.

This all depends on us keeping her insurance active. The next $570 payment is due on the 18th of January, and we've got a couple of insulin/CGM sensor refills between now and then. Donations help, sharing the GFM helps, everything helps. Thank you all so much. 🧡

[smalife1234]

It's our 6th weekly smiles!! I can't believe we've made it this far on Tumblr 🥹!!

What made me smile this week?

Monday, 9/2/24 - today, we had the day off because it was Labor Day! And it is my favorite month! It is Spinal Cord Injury Awareness Month! And also my third human year as a Quadriplegic! Which for me is baffling to me! Sadly, the day didn't end well. Luz, our friend, ended up feeling sick and not feeling well! She had bad back pain! But we chilled for the day and slightly slept in knowing I could enjoy those few minutes of sleep without being panicked by time! That made me smile!

Tuesday, 9/3/24 - today we went back to school! And this week is shorter! Yay, so that's fun. In the first period, I continued working on my online assignments, and then we got a bunch of papers, but I didn't do any of them (don't worry, they're not due this week). At 9:30 Am, I got called for senior pictures! I walk in there all nervous but come to find the people are pretty enlightening! So that made me smile! (Keep in mind Matthew only got these senior pictures) But first, Matthew Tucker and Sydney all got their indoor photos. Many poses and pictures were done! (And surprisingly I don't think y'all know Matthew wears glasses!) But there were some shots of him that needed his glasses removed and we cannot wait to see those images once they're ready! We then head outside and get their outdoor photos! They had a blast knowing Sydney struggled to figure out how to sit in the chair lol. All in all, it was hectic yet fun, and we enjoyed missing most of the second period! Lol, and also, I started my period today, which is fun! I mainly chart this because of endocrinology information since they ask me these types of questions and I've always been bad at remembering! So I'm smiling knowing I'm taking better care of my health! We soon went home and enjoyed our night.

Wednesday, 9/4/24 - this morning I woke up in a pretty good mood! And then I chilled on the bus for a while. In the first period, I had to work on a very confusing assignment, which basically talked to the teacher about it, and I decided I'd work on it tomorrow! In the second period, I chilled as we got some notes and assignments we had to work on. Sadly, this assignment was pretty difficult as well, and it was hard to work on, but soon I got it done, and it went well! Then in the third, I got all my work done and had a pretty ok-ish salad, and then in the fourth, we chilled and talked about a really weird subject. Lol, today made me smile!

Thursday, 9/5/24 - today I sadly woke up with symptoms of feeling sick! Like runny nose and coughing! So that scared me a bit. I continued working on my assignment and actually started labeling some of the sticky notes that were required to label the large mannequin. I soon got the hang of it! I started labeling the mannequin. Sadly, I only got two things labeled, lol, so that was fun. Then, in the second period, we had a sub and started working on a worksheet! That was very long lol! But I got some of it complete (don't worry, it wasn't due until Tomorrow!). Then, in the third, we chilled and just learned about our brains! And how it can lie to us again that was super cool! In fourth I was pretty tired because I was feeling semi ok! I was scared I was going to get sick, but by the end of the day, we chilled for a while! And slept most of that night

Friday, 9/6/24 - today I sadly woke up sick and super congested! I could barely talk without my throat hurting and it sucked! On the bus, I kept coughing. Thankfully, I had thought the congestion had gone away in the first period. I was all right, but I was still coughing and sniffing! But I actually got my mannequin fully labeled and got my labeling sheets fully filled out! And colored coded it made me proud that I got all that work done! I was only two hours into my chemo session so I was pretty impressed with how well I was doing! Lol. Then, for the rest of the class, I worked on skeleton labeling and drew some magnification of muscles and tissues! I think I did ok! Then, in the second period, we had a sub who will now be our permanent substitute because we found out that Mrs. Mauney was having a baby! And that Monday, we'll get information, or however many days pass, we will get more news as our substitute gets it! We enjoyed the class as it was pretty chill. Sadly, we had a quiz on Matter and density! I think I did ok then I finished the rest of that worksheet sadly my back was killing me and my throat was not feeling great :/ that didn't make me smile! At lunch, I kept coughing but enjoyed my salad 🥗. Then, in the third period, we chilled and did a sheet that required us to answer questions from different websites. It was super easy, and I got it done by the end of class! Then, in the fourth period, we were doing notes, but I felt so tired and drained and kept coughing my lungs out; my throat hurt, and my back hurt more than anything! It was really miserable! But I was grateful it was fourth period and Friday so I could deal with this sickness in peace. Later on at home, I basically sat and chilled most of the day and then headed to bed around 8:03 P.m., which is not normal for me, so I definitely knew that the cold wore me out! Today was exhausting but it also made me smile!

Saturday, 9/7/24 - today, I woke up at 8:00 Am not normal for me, considering I almost always wake up around six in the morning. I sat on Instagram most of the day and continued coughing my lungs out. My throat hurt less today than it did yesterday, and luckily, the back roller trick I did yesterday or last night had worked, and my back pain, for the most part, was mainly gone! So that was good! And then I ate ramen that day and two bags of Takis the whole day, so my appetite wasn't completely shot, but it also wasn't that great either. I mainly took a chill day, to be honest, considering I had just gotten sick and I just had chemotherapy! But during my chill day, which wasn't a lot of work, we brought in a Walmart order, and then Matthew had to dump a whole thing of moldy food! Not fun at all and then he had to dump old peppers out! Again, it was not fun. Then we did laundry, and then we went to bed around nine p.m. Today was very boring yet chill, and it was exactly what I needed! Today made me smile!

Sunday, 9/8/24 - today, I woke up around 8:00 Am again, so not normal, but I am happy to report I am feeling much better! I do have a runny/blogged nose, but my throat barely hurts, and my back is not even sore! I'm glad I did most of my recovery at home, and I believe I only need two more days, and hopefully, I'll be back up and moving! Only time will tell. In the morning, I mainly chilled on Instagram, where I've been finding myself recently. Then, around 10 or 11:00 Am, we did some laundry and chilled. We mainly watched shows and casually relaxed! We were laughing at how floppy my body was and how horrendous our friend Luz's burp was! It was so hilarious, and then we saw Donny's old self (outfit) and tried to fit it in his wheelchair (and no, sadly, we don't have a picture). It went horribly wrong and sent everyone into abrupt laughter! Then, later in the day, we got some yummy pizza with pepper flakes! And Parmesan cheese (don't hate until you try it!) was very good. Matthew and Emmie had 5 slices well, almost 5! I had a few bites since I cannot chew pizza very well! But my few bites were delicious! I got a new outfit and enjoyed the chill afternoon watching shows with my baba and my babe drinking beer 🍻! Lol, we had a nice night, and now I'm going to end the entry here! Thanks for reading this whole week, and I'll see y'all next week. This whole day and week made me smile!

What made you smile this week?

Img desc #1: shows the tall mannequin skeleton with some blue labelings.

Img desc #2: shows Emmie smiling on a cruise near a glass wall with a brown handrail Emmie is seen wearing a pair of black sunglasses 🕶️ and a green short-sleeved shirt and blue jeans she is smiling while sitting in her electric wheelchair

Img desc #3: Matthew and Tucker are seen facing back to back. Matthew, seen on the left of the image, is seen smiling while his head is tilted back towards Tucker's head. He has a dark green buttoned-up long-sleeved shirt, and his hands are cuffed around his bicep area. He is standing near Tucker, giving a big smile. On Matthew's face is a pair of bulkyish pair of transparent glasses. Tucker, seen right of the image, is seen with his arms crossed, his hands cuffing around his biceps. His head is tilted back. He is wearing a white long-sleeved buttoned shirt and a golden and black colored blazer with a golden and black bowtie. There is a wooden background behind them. They are smiling very brightly.

Img desc #4: the large mannequin is seen standing on a grey desk with a few blue labels taped to the mannequin.

Img desc #5: doc is seen smiling slightly with her face red from coughing and sneezing all day. She is wrapped comfortably in Emmie's hoodie, grey sweatpants, and white socks. On Doc's lap is a big puffy pillow. A big brown pillow is seen behind her weak floppy Head!. She is very comfy!

Img desc #6: doc and Emmie are seen smiling in the dark near a building Emmie seen right of the image is seen smiling in her electric wheelchair wearing a white short sleeved buttoned up shirt with beige colored squares designed on her shirt paired with her shirt is beige colored shorts. Emmie's hands are propped up by her electric wheelchair. Doc who is seen left of the image is seen in her electric wheelchair and smiling while wearing a brown colored short sleeved shirt and black skinny jeans and brown shoes she is smiling big!

Img desc #7: doc is seen looking shocked while wearing a grey short sleeved shirt and grey colored sweatpants! She is seen near a group of friends and a glass transparent door.

Img desc #8: doc and Emmie is seen smiling doc is seen beaming with excitement! And seen wearing a black short sleeved shirt and grey sweatpants Emmie her wife seen wearing a white short sleeved shirt and smiling in her manual wheelchair they are seen near trees and a beautiful sunset 🌇.

Img desc #9: doc is seen asleep in a car with her head strap (she barely needs this as of right now but she is getting close and we wanted her to be comfy) her back was sore and her throat hurt and she kept sneezing sadly not a fun day! She is seen wearing a pink Hawaiian themed Short sleeved shirt and beige colored shorts her eyes are closed and she's fully conked out!

[ink-asunder]

I hate how all doctors seem to be in denial of any possible side effects happening with literally any medication. "Oh BC doesn't cause weight gain!" It's literally the first side effect listed!! "Are you sure your vitamin levels aren't just weird?" Bitch I'm on a chemo drug. Of COURSE the spinal degeneration, fatigue, digestive issues, hair thinning, skin inflammation, and chemical hypersensitivity are caused by it. "I just don't understand why you have tachycardia all of a sudden 🤯." YOU PUT ME. ON A FUCKING MUSCLE RELAXER. AND I'VE HAD TACHYCARDIA EVER SINCE. FIGURE IT OUT.

I just don't get why I'm being blamed for iatrogenic symptoms. What, are you afraid I'm gonna sue you if you admit this is caused by the medical intervention YOU were responsible for?

And don't even get me started on undocumented side effects, because it's not even worth bringing up at that point.

[jennygamble]

Lepto outa left field!

After re-reading my last post, I can see that I was still grasping at what I didn’t understand at the time to be a serious event. My doctor said “it is a miracle from God” that I have recovered as I did. The truth is, yes, there was a narcotic effect that made me incoherent (not recognizing my family) and took me to the ER. However, Lepto Menengial disease also has this effect and can be catastrophic if not detected. So… ultimately this was a perfect storm and I am lucky I got through it!

The metastasized breast cancer has found two distinct homes in my body (my bones and my CSF cerebral spinal fluid). Neither are curable and each has their own concerns and treatments. I’m on a new oral chemo to treat my Bone Mets and an Intrathecal Chemo that delivers through my skull to treat the CSF. Yep, I have a port in my skull!!

Lepto Menengial disease is a very rare and statistically devastating diagnosis. So far, I have been very lucky to get it identified and treated (infusions twice a week). At the moment the treatment is working and soon I can enter the maintenance plan, which is infusions once a week.

And so as I write this “report” I can see how dramatic the changes in my life have been. I was delirious with hope on my initial Bone Mets diagnosis but the new lepto situation has forced me to face a less optimistic possibility. I know I am in superior care with my current medical team. I am benefiting from the best that western medicine can offer. I’m also working with an amazing oncology natural path doctor who is helping me support my body to be strong through this journey.

While these cancers are considered “incurable”; they are treatable and can add years to my life.

But the very best medicine is what I already have! Incredible love and support all around me! More thanks to come in future posts! My family and friends are the deep wells of love that fuel my will to stick around and to defy statistics! Jared, Cliff, Marina and Delilah are the ones keeping me going!

Life is so beautiful. There will never be enough of it to satisfy me so I continue my Carpe Diem and make the most of what I’ve got!

[pippindot]

So we have an answer for Pip's back now.

She had an MRI and CT scan. Good news, we know what it is, Dr says should make full recovery, no longer be painful, and not really be at risk for reinjury.

Sad news, turns out she has had 3 hairline fractures in her problem vertebrae this whole time. Dr said was a complete freak event where conditions were just right for this to happen, in that moment of pivoting her muscles were so strong and put too much torque and it broke her lil bones. She thinks the reason it has taken so long to heal is because the cells in charge of triggering inflammation and subsequent healing are lymphocytes...and Pip's lymphocytes were busy being stupid and doing cancer stuff. Then with the chemo, her body was never able to start healing properly. It is partly healed now already, and Dr thinks in 6 to 8 weeks we can start slowly ramping up activity. For now we just baby it while her body lays down protective scar tissue or new bone.

Dr not concerned at all, it is very stable and her spinal cord, nerves, and discs are all beautiful. We can still do our hikes and conditioning exercises, she wants her to build core strength and stay flexible. Just no sports quite yet, but we should be able to get back to it!! We really were doing everything we could and nothing we were doing made it worse (we just aren't allowed to continue chiropractor).

I'm glad I got peer pressured into this.. its good to have an answer. I cried though, I feel bad she had this happening for so long 😭

[skippyv20]

Our Prayer List🙏🏻❤️❤️❤️❤️❤️

Prayers and good thoughts for @sandiedog3 husband who is not well, and for @sandiedog3 who we know is worried. We pray for her husband to be pain free. We also pray for them to feel God’s presence during this time.

Prayers and good thoughts for our friend’s niece who is expecting in 4 weeks. She has had issues during this pregnancy and is doing much better now…so we will pray for healthy, and happy baby. Prayers and good thoughts for our friend. She is having cardiac issues and will be having many tests. Also her blood pressure is very high. Her mother had many heart issues and this has frightened our friend. She is very anxious and scared.

Prayers and good thoughts for our friend. She is going through a difficult time. She has had a rough 12 months and is feeling burnt out. She also is dealing with a narcissistic father, and taking care of her elderly mother with no support from family members.

Prayers and good thoughts for @sandiedog3’s good friends, Darren and Kim. They are mourning the loss of their brother Simon. He was only in his forties and he spent that last decade nursing his much older partner with leukemia and dementia and now he has died suddenly bless him.

Prayers and good thoughts for Kylee who is missing. It has been months since her mother and grandmother have heard from her. Today is Kylee’s 18th Birthday. We pray Kylee is safe. We pray for her mother and grandmother as they are so worried. (This will remain until we hear Kylee is home safe and sound) June 15 Prayers and good thoughts for our friend’s 22 year old nephew who is struggling with anxiety, depression & panic attacks.

Prayers and good thoughts for The Princess of Wales as she continues her battle. We pray for The Prince of Wales and their children, and Catherine’s family during this time.

Prayers and good thoughts for our friend’s mother. She is battling gall bladder and liver cancer and had an ischemia that obligedi the surgeons to remove 70% of her intestine. She will have to live with a colostomy bag permanently. The doctors are waiting for her to be strong enough to submit her to chemo and immunotherapy to reduce the liver tumors. She is still young (78 years old) and also because she spent her life taking care of her children and their father who now has Alzheimer's

Prayers and good thoughts for our friend who is suffering from ringing in her ear. It is constant and she can’t sleep. Neither her doctor or dentist can find the cause.

Prayers and good thoughts for our friend’s husband who is in the hospital with a blockage, he’s been there for 2 days, and his wife is hoping he’ll come home on Monday. She will has had her surgery and is in terrible pain. Her husband is losing his job at the end of June, and her heart doctor said to be prepared for heart surgery once she heals from her foot surgery. She has a leaky aorta valve.

Prayers and good thought for our friend’s brother who was just diagnosed with terminal stomach cancer, secondaries in his liver and lungs. We pray for our friend and her sister to have their trip go smoothly as they plan their trip to be with their beloved brother. Also, we pray that their brother will be pain free and that he will be at peace.

Prayers and good thoughts for our friend’s mother who is feeling a bit confused at this time.

Prayers and good thoughts for our friend who is having suicidal thoughts, and having difficulty finding employment. Praying she finds employment soon.

Prayers and good thoughts for our friend’s son and husband. Her son has spinal fractures and they don’t know why. Her husband is having issues with his back as well. Prayers and good thoughts for our friend’s husband who has just had surgery. We are praying for good results, and quick healing. May 8

Prayers and good thoughts for our friend who still suffers from effects of having Covid 19, and struggles. May 3

Prayers and good thoughts for our friend whose husband had a mental breakdown and they are now facing financial hardship. He is bidding on numerous jobs and needs prayers.

Prayers and good thoughts for our friend’s oldest daughter. Her daughter is on dialysis now. She did test positive for drugs, and her boyfriend is a known drug dealer. This is of great concern. Mar 27

Prayers and good thoughts for our friend who is trying to find the right maintenance dose of medication. Without it she is susceptible to many different illnesses. We pray this appt brings good results. Also, prayers for her mother who is still recovering from surgery. Mar 24

Prayers and good thoughts for our friend’s FIL who has been diagnosed with cancer. Still waiting on results as to what type of cancer. He has been diagnosed with stage 4 cancer. Mar 11

Prayers and good thoughts for our friend’s treasured son-in-law. He has been diagnosed with esophageal cancer with mets to the liver and lymph nodes throughout his abdomen. He has a very poor prognosis - less than a year, probably just a few months. He is only 48 years old. Our friend is heartbroken, her son-in-law has been in the family for 17 yrs, and he is so very loved. He is scheduled for a PET scan next week. Mar 05

Prayers and good thoughts for our friend’s nephew who is struggling. Feb 11

Prayers and good thoughts for our friend’s nephew who has been diagnosed with rheumatoid arthritis. Feb 3

We pray for our friend who for 36 years has suffered from a progressive, painful, debilitating neurological illness that has her housebound, and she is tired.  Jan 19

We pray and send good thoughts for our friend and her daughter who is going through some things. Jan9

We pray and send good thoughts for one of our Tumblr friends who has stepped away and we await her return. Jan6

[marshmallowprotection]

MC waking up early from the gas is interesting to try to figure out but I also find it funny because I, personally, can potentially justify it for myself. Maybe I don't have Saeran's tolerance for the elixir but I was pumped full of so much shit during chemo, including being sedated every couple weeks for spinal taps (and not even with gas, they did a syringe right into my central line). I wouldn't be surprised if I've built up some kind of tolerance, even if I've been off it all for a while. Medical nonsense coming through for once ✌️

You know, it definitely is possible that you could have a tolerance to it. It definitely isn't unheard of for people to have a hard time with anesthesia after going under so many times but there hasn't been a lot of study into that. With your added experiences, I dare say you might have a reasonable explanation of why you wake up on time.

I wouldn't have that even though I've been under a few times myself in the past for health reasons. I just know I would be knocked unconscious for a lot longer than the rest of them and it would trigger a bad ending. I have insomnia, and I might actually thank Rika for the experience if I wake up refreshed for once in my life. She should have gone into medicine instead of making a cult.

[newhologram]

New's March 2023 hospitalization update (2 years after March 2021 hospitalization)

I'll try not to meander too much in this health update, but there is a lot to unpack, and some backstory to lay out first. (tldr will be at the end)

Recap: I have a lot of conditions but this is mostly about my ulcerative colitis (diagnosed 2011) and endometriosis (suspected/undiagnosed). Every 2-4 years I get a colonoscopy to check the disease progression because colon cancer also runs in my family. My colitis has always been considered "mild" and my colonoscopies generally don't look that bad despite me not taking colitis medication the past 12 years since dx. But I'm still having debilitating GI symptoms, especially in the past 2 years since I was hospitalized in 2021 for the worst flare-up of my life. While recovering, suddenly in June 2021, what I thought was a "spinal flare-up" increased my level of disability so much so that I can't really sit up for long now.

In 2022, while trying to get to the bottom of my "back pain" with another spinal MRI, I noticed that my left ovary was very obviously enlarged but that no one had marked it on the report.

In 2022 I had 129 appts which included many ultrasounds/CTs/MRIs and we learned many things: my ovary is in fact enlarged and likely full of blood, the lymph nodes around my colon are enlarged, and there's wall-thickening (lesion) on my colon. Even before the lesion was discovered my PCP was already pushing me to oncology because of my ovary, so I now do bloodwork every 3-4 months to check my blood for signs of cancer. This is important and I get why they're checking it, because my symptoms are also suspicious for lymphoma or leukemia, but I really don't think that's what's going on at all. Still, here I am with a cancer doctor who doesn't wear a mask at his appts when he has CHEMO PATIENTS IN THE OFFICE. Wtf.

While spending 2022 trying to access an endometriosis specialist, I've become more and more disabled. I'm at the point where I constantly have intense pelvic/back pain even when not on my period. I've had to go to the ER over it multiple times. I was only able to access a gynecological oncologist who "treats" endometriosis via full hysterectomy and ablation. She wanted to "burn" the endo lesions (not remove them, which would allow them to grow back in 4-6 mos), and completely remove my uterus and ovaries. I pointed out to her that neither of these things treat endo and her dumbass tried to argue the outdated reason why.

There are only a few hundred endo excision surgeons in the world who would be able to handle the kind of surgery I need, which will likely involve multiple of my organ systems if the endo has spread as much as suspected.

Moving forward, I knew I needed to get the lesion in my colon biopsied, so I also fought for a GI last year. Since then I've gone through 4 different GI docs because they're impossible to make appointments with. I even had a consult with one for my scope, but my insurance wasn't with his surgery center, so I couldn't do it.

RECAP OVER, PRESENTLY: My body has been going through it and I still needed that scope badly, so my PCP urged me to go to the ER and try to get admitted for scope again like I did back in 2021. This is what happens when insurance makes it impossible for us to access care: we have to force it at the ER.

I finally had the mental strength to do it, so I packed my bags and went on a Thursday morning.

I got to my usual hospital around 10:45am. To my surprise, they got me in really fast and the doctor I spoke to agreed that I needed to be admitted and scoped immediately. I didn't even have to fight for it for 12+ hrs withering away in an ER bed like last time. She saw my records, heard my story, and believed me. They did labwork and got me in quick for a CT scan which confirmed my ovary is still enlarged, but also that my kidneys are a little backed up (have known this) and my bladder wall is thickened. These all further point to endometriosis. At this stage, it's likely invading my ureters, bladder, and bowel, which is why I'd need such a specific kind of surgery to handle it.

Our first concern was a colonoscopy to biopsy the lesion first and rule out cancer, and possibly confirm endo since that would be obvious under the microscope. I knew it was going to be a rough time, with the liquid diet/prep/enema/etc, but I thought at least I'd be comfortable there with my own room to rest in like last time. I had packed everything I needed to stay sane. I thought maybe I'd be in the hospital 1-2 days max, since we knew exactly what needed to be done.

But it turns out my insurance is no longer contracted with my hospital, so they had to transfer me into the city, a 40 minute ambulance ride away. I waited 5 hours in the ER bed with no fluids, meds, or pain relief while they tried to get my transport ready. I really hated being strapped into the gurney, very uncomfortable. The paramedics were nice enough and helped to keep me distracted during the ride.

I was put in a room with 2 other patients, elderly women who shouted and aggressively prayed to Jesus while both their TV's blasted from 7pm to 5pm the next day. I didn't sleep because of the noise, but also becasue my first nurse sucked ass. She was so awkward and not understanding what I needed, and would only give me ketorolac for the pain and no morphine (bitch, why would I be hospitalized for you to give me the SAME MEDS I HAVE AT HOME THAT I JUST TOLD YOU BARELY HELP?)

In the morning, I had a much better day nurse who gave me morphine, fluids, and colitis meds (steroids, anti-inflammatory stuff). And both noisy patients got discharged by evening so I had a good solid couple of hours all by myself in the room. One of my new roomies ended up being pretty loud/oversimulating but still much better. I know we were all going through a lot and in pain but the shouting really freaks me out :(

I was also allowed to have a liquid diet at some point before that. I had gone a full 24hrs with no food or water because the whole point of this was to get scoped, but when I brought that up everyone acted confused and said it wasn't on my file or anything. I had been waiting for a GI consult the whole time, for a scope. Finally he came in and wouldn't listen to me, kept saying that my efforts at diet/supplements don't matter with colitis and that I just needed to be on meds/other immune suppressants. I had to interrupt him several times to get him to stfu and listen to what I was saying, that this is likely ENDO, not just colitis, but that I need this scope and biopsy done to rule out other things urgently. So he finally was like "ohhh, endometriosis would make a lot of sense" and agreed to scope me in the morning (Saturday).

So it became night 2 and I was started on the bowel prep. I didn't sleep, but thankfully had another good night nurse who kept my spirits up. Wouldn't be able to sleep much anyway since they were waking me every few hours for vitals, and at 4-5am to take more blood. My blood pressure and potassium kept both being low, which is a new thing for me.

Nurse came to bring my enema before sunrise and by 7:30 I was first in line in the scope surgery room. Weirdly probably the easiest colonoscopy I've ever had, I usually have a really rough time with the recovery. But I noticed when I woke up (and stopped rambling lol) that they had not only bundled me with blankets but put a tube of hot air under them with me. Because I had told them that I usually shiver really hard after being put under. I'm sure that helped me not feel like death after, I was so toasty. I also wasn't anxious beforehand. Usually the little pulse monitor is beeping so fast because I get so nervous, but honestly I think I was just super numbed out by that point.

Once I was coherent, the GI brought me a nice color print of my colon pics. And wouldn't you know it, my colon actually looks good, inflammation-wise. Still really minimal, a few visible ulcers here and there, but not terrible. Which means that every time a GI tells me "diet and supplements don't matter, you just need to be on meds/immune suppressants", they're full of shit. Clearly all of my hard work with smoothies, bone marrow, etc, works. If it didn't work, wouldn't my colitis be terrible after 12 years living with it, with almost no meds?

He saw no lesion (but still took plenty of biopsies), which means that the lesion is on the outside of my colon (hi, endo). He did show me another important piece of evidence: part of my colon is very visibly twisted, which makes so much sense. The pain, pressure, weeks-long constipation episodes, my decreasing ability to tolerate solids. The endo is likely scarring/gluing it into that position. More reason I need excision surgery, because they know how to restore the anatomy of the pelvic organs.

After the scope, I was feeling hopeful about getting home by that afternoon. But they wanted to do a CT scan to check my uterus again (even though I'd just had the same scan a few days ago). And because the radiology dpt was so backed up, I ended up being kept a whole extra day. Just because they wanted to know my results, which were "unremarkable" even though the one from a few days earlier noted all the other stuff I mentioned. I was pretty upset but just tried my best to stay distracted when I wasn't able to rest. Had a lot of sweats though, suddenly. Night nurse wouldn't give me my midnight morphine because of my low blood pressure, so I was pretty uncomfortable. Nurse also informed me that I have grade 2 hemorrhoids, which the GI failed to mention. KINDA IMPORTANT, DUDE. But makes sense, colon stuff, blah blah. Not really my main problem right now, though.

Finally got discharged in the late morning/early afternoon. Hardly remember the past day being home except for the epic 3 hour long bath routine I did lol.

The morning after, I went to pick up the colitis meds they'd been giving me only to find it's $174, so I didn't even get them. I make less than that in a day, and I'm barely working 3-5 days a month at this point. Sometimes a period of 3-6 weeks will go by where I can't/don't work. Also since the source of this pain is not the colitis, but the endo, why the hell am I gonna spend so much on medicine when I already see good results from bone marrow and everything else I do? I bet you if I didn't have endo, my colitis WOULD be as "mild" as every doctor says it is.

I'm glad I finally got all of that out of the way… but the truth of the matter is that I'm nowhere closer to getting the surgery I need I may now have a little more evidence pointing to endo, but none of that matters when I can't access the experts. The best endo surgeon in Los Angeles doesn't take insurance and just a consult with her is $1500+.

My only barriers are the American healthcare system and money. These two 100% fake made-up things are keeping me from living a better and longer life, and I'm expected to be positive through this all because "it could be worse" or whatever.

There is so much that makes me happy, that I'm so grateful for, that really makes it worthwhile for me to stay alive to experience. I'm genuinely still able to have fun, day to day. I make my own little bit of fun out of whatever I can. But I'm in so much pain. I've been disabled my entire adult life. I've never known anything else. I've been frozen here the entire time, just trying to make meaning and find happiness hidden underneath it all.

So what's next? There's nothing more to do, no other way to fight when it's just about money. The only thing in I can do right now is try as much as possible to eat stuff that won't clog my silly twisted part of the colon and cause more pain. I've already lost weight from this ordeal, but the bone marrow might help me get my calories in at least. I'm hopeful the testosterone therapy will reduce some of the endo inflammation, but the damage is done. Scarring like that requires surgery to fix. No amount of good diet, acupuncture, positive thinking can unglue my organs from each other.

I know this all could've been so much worse, but it was hard for me and making comparisons is useless. Thanks to everyone who messaged me, sent memes, etc. Kept me from losing my mind at the hospital. Now my pain level is back up and the medical PTSD is slapping, so I'm going to do my best to stay hunkered down this week.

TLDR;

Colitis patient, 12 years. Colonoscopy was a year past due, unidentified lesion in colon, family history of colon cancer. Suspected endometriosis. PCP told me to go to ER because it can't wait, worsening condition, weakness, pain.

ER did a CT: ovary cyst still there, and kidneys backing up/thickened bladder wall (more endo points). Got admitted but to a different hospital kind of far from home. Mostly a shit-show, very overstimulating and didn't get taken care of that great at first.

Got colonoscopy, colon is looking alright. Still "mild" colitis, which means my supplements/diet works and my GI docs are full of shit about meds being the only way (but you knew that.)

But: part of my colon is visibly twisted, possibly explaining a lot of my pain. This would be due to endo and the only treatment is surgery, which I can't access. Pointless to pay $174 for colitis meds when this pain is not my colitis, but endo messing with my colon/other pelvic organs.

Since I can't afford such an expensive surgery, there is nothing else for me to do in this fight.

Unless I get a windfall, all I can do is eat gentle and keep surviving this pain.