When we last left Heather, she was just beginning to settle into her recently revealed lymphoma diagnosis, and looking to reap the rewards of being a pitiful pathetic sack of shit.
Heather starts a new blog, which only lasts for 3 posts before it is abandoned. Again says she’s private about a lot of things but these posts are raw.
She shares a TED talk called “What almost dying taught me about living” and posts an Amazon wishlist along with the GFM. I don't even know what kind of shit she put on there.
Heather’s first blog post starts with an introduction, she’s a senior kinesiology student applying to PT school (she did not meet the requirements for UNG’s PT school apparently), and she is a survivor “of many circumstances.” She says that after she became sick, she got depressed and hopeless, but realized that she could still be happy while also making “an even bigger impact now.” She watched a Claire Wineland video (her episode of a series called My Last Days) that changed her life and she’s watched it 20-30 times.
Claire says “the quality of your life isn’t determined by whether you’re healthy or sick or rich or poor. It’s determined by what you make out of your experiences as a human being.” This sparked something inside Heather (to use her illness for attention) to stop “living for treatments and medicines and doctor appointments and allow those things to help me live.” She wanted a bigger platform.
She feels like she’s in an odd place as a married 22-year-old college student who founded a nonprofit (she founded a college fundraising club) and is fighting chronic debilitating illnesses while applying to grad school, to hopefully one day work at the children’s hospital that she holds so near and dear to her heart. “Kinda crazy right?” This bitch wants a movie written about her so bad. Heather says being chronically ill puts her in the grey area between the “kingdoms” of sick and healthy. Our world, OuR sOciEtY isn’t built to care for and support people with chronic illnesses. “We do an injustice when we keep teaching sick that they cannot start living until they are healthy.” This is an interesting line coming from someone who demonstrably can’t handle being told by medical professionals when they can’t help her further and she has to learn to live with her symptoms. You’ll see.
Heather goes on a beach trip, drinks fruity drinks, no medical issues reported.
She shares an article “What lighting the white house gold would mean to me as a pediatric cancer survivor” (Heather never had pediatric cancer.)
Her next blog post is inspired by Megan Rapinoe giving a heartfelt speech after the US women’s team won the World Cup. Love more hate less bla bla bla. Love is when you’re nice to people. Heather has been through more in her 22 years than some people’s whole lives (that’s conceited!) but she chooses love.
She posts a bunch of worn shoes for sale, including a pair of very broken-in Chacos sandals. Ew.
Heather makes a Fiverr listing to write articles. I assume no one took her up on this offer, because she is not a very good writer.
Heather is tagged in a post swimming at a river somewhere. Looking very tanned and lively!
She posts asking if anyone has any connections to get a cheap domestic flight. (Wouldn’t that be nice) They are going to Orlando.
The summer semester ends and Heather posts about her “family” for the summer. Have you noticed yet what I mean about codependency and boundaries? That gets worse.
Her next blog post is about people who are mean, and an encounter she had with her service dog at the park where an older man told her she must not have learned to read and she wasn’t in a disabled park. She tried to be nice to him but he was still mean to her. Heather copes with people being mean by trying to empathize with them. He may have been having a bad day and he doesn’t know she’s sick. It still made her quite upset.
Heather travels to Orlando to meet professional soccer player Alex Morgan and the Orlando Pride women’s soccer team, and the guy who founded TWLOHA. Being sick is hard but they saw past that and they were nice to her. Even though being sick is the only reason she was there and the only thing they knew about her.
The TWLOHA guy Jamie posts about Heather on his Instagram, says she was diagnosed with a rare form of cancer at 16, lost the game she “loved and played incredibly well” (lol) and doctors told her she wouldn’t live beyond 18. (Heather was diagnosed with SLL at age 21)
Heather is also apparently an ambassador for the chronic illness accessories brand Mighty Well.
She reposts the Amazon wishlist and GFM links, and attends a Rally Foundation event for childhood cancer.
Heather gets swindled into hawking Mary Kay, which fails miserably. She posts about her first party, she can’t wait to see where this business takes her and how much it will help her and Ryan. Lol. Lmao.
For childhood cancer awareness month, Heather gets her own special shirt through the Rally Foundation as a Rally Kid.
She shares the trailer for Claire, the documentary about Claire Wineland. Heather says Claire inspired her and changed the way she views her illness. (Heather wants to be Claire)
Heather attends the childhood cancer awareness Braves game, wearing an oxygen cannula. She wears a cannula out in public inexplicably for a few weeks and then never again. In her post about the baseball game, she names several organizations that she says have “loved on me directly and do amazing things in the childhood cancer world.”
Heather posts for National Suicide Prevention Day wearing a TWLOHA shirt. She says many people don’t know the struggles she’s personally faced, there’s a toll taken mentally when you’re physically sick. (Heather has previously cited her mental health issues as being triggers for her physical health issues, not the other way around. She first struggled with PTSD, depression, anxiety, and suicidal thoughts before becoming sick.)
Being sick is hard but she chooses hope and chooses to keep going.
She attends the Atlanta United childhood cancer game, again with the oxygen. Heather says being a “lymphomie” isn’t a club you ever want to be a part of, but once you are, they’re some of the most supporting and loving people you’ll ever meet. Well, yeah, everyone has fucking cancer. This is yet again, just, a very weird thing for her to say.
Heather makes a long post on FB about feeling stressed over bills and health, new diagnoses, “most caused as a side effect from treatment.” Her body is at war and she works hard to make it look easy but it’s hard. She’s felt anxious and alone but after another disappointing appointment at Emory, Heather went back to CHOA to get her ass patted/visit “a couple of” her former doctors. She talked to Dr. Garza, and took a selfie with him (no oxygen) and he helped her gain perspective.
All the good things in her life like meeting Ryan and founding her club and getting her dog came from “a terminal illness.” Her entire life and identity revolve around childhood cancer even though she insists being sick sucks. Heather says being healed or cured doesn’t mean literally fixing your body, it means being proud of your life and fixing your perspective. What the fuck is this bullshit lol. “This life ain’t easy but I’m so grateful to live it.” ??????
Dr. Garza is smiling like he's being held up at gunpoint.
She attends a cookout for Miracle UNG wearing the cannula. IDK why she lets the tube dangle like that. Is that normal?
Heather posts a smiling hospital bed photo but the caption is about how being sick is hard. She says she doesn’t make posts like this/show these pictures often (not true) because they’re hard and it makes her seem vulnerable. She went in for a simple procedure but they found problems that will need following up with, and she had 7 seizures while coming out of anesthesia. She will also be having a port placed soon. She’s felt bad lately but being at childhood cancer events and talking to other lymphoma patients she realized a lot of people are a lot worse off than her and she should be thankful.
Lots of super cute hospital babe selfies from this visit.
Heather shares a post from Rally Foundation featuring herself. The post says she’s battling SLL and many of the side effects that have come post-treatment. She LOVES being a Rally Kid!
She shares the GFM link again, she has upcoming procedures, plus will be paying $45 a week for home infusions “that will be so beneficial to me in the long run.” She says she’s stubborn and independent and tries to forget she’s sick most of the time but she’s working on embracing her life. (all she talks about is being sick!!)
The official USWNT page posts a photo of the team with Heather. She got to meet them in Charlotte, cannula included. Again, Heather posts about how the team saw her for who she was instead of a sick person, even though her identity as a sick person is the only reason she was there.
A few days later Heather has her port placement surgery. It will stay indefinitely while she receives home infusions 3x a week (saline for POTS lol) and she can have labs drawn from it as well. She said that because of her issues with anesthesia the procedure was done under local only and it was traumatizing for her and she cried and hyperventilated until it was over. (aren’t port placements usually done under local anesthesia?)
She names her port Polly, like any well-adjusted adult would.
there's a few more pics from this visit that I've compiled from other photo dumps
Wishlist is updated with port accessories.
There’s some kind of chemo shortage in the news and Heather makes a few posts about it. She says she was on the drug in question (Vincristine) and the side effects were awful but it did help. (the only drug I've seen her claim is "FC therapy" which is Fludarabine and Cyclophosphamide, these are often administered in conjunction with Rituximab. Vincristine
is listed as being used to treat non-Hodgkins lymphoma, but this is the first and only time it's ever mentioned by her.)
Heather gets into PT school again, says it was her first choice, so many have doubted her but she’s had great support. She has a special shirt made for it. She takes graduation photos, her cap says “nevertheless, she persisted” with a CMN balloon.
A week later, Heather posts from Northeast Georgia Medical Center (I started numbering the hospitals while I was writing so I could keep them all straight, because there's a few hospitals with multiple campuses and she jumps around a lot. NGMC is hospital 3) asking for prayers, “out of the ICU but still much going on and decisions to be made.”
Then a post saying she’s making a secret FB group to share health updates.
More hospital pics, rough day she says, she is going to update in the group.
The first post in the group includes the GFM link, her payment methods, the Amazon wishlist, and a list of other items they could use like grocery and gas cards. The group description lists Heather as having POTS, adrenal insufficiency, EDS, GI dysmotility, and migraines, all following diagnosis with SLL. Interesting.
A group member comments with advice about POTS and PNES, Heather asks them to PM her.
She advertises the group on IG with the caption “1 dog, 2 hospitalizations, 3 code blues, 4 IVs, and a never ending bucket of friends to support me!” That’s a pretty shitty way to refer to loved ones, IMO.
Heather gives an update that last week she started seizing at her internship, went home, eventually went to the doctor, transferred to hospital 3, where apparently she coded. She was in the ICU for a few days, no answers, they didn’t give her her adrenal steroids, making her worse upon discharge. A friend came to stay with her so Ryan could go to work and when the home health nurse came to access her port, she had a seizure and stopped breathing. 911 called again and she went to hospital 1 (Northside). Yesterday she went into adrenal crisis, and learned she has non-epileptic seizures and “we’re figuring out how to treat them because they are now lasting over 17 minutes.” She loves visitors.
Multiple smiling hospital and doctor selfies.
Another article about her, this time in the Atlanta Journal-Constitution. Heather is described as a survivor of childhood cancer. (Heather never had childhood cancer) the article says her health issues motivate her to work even harder, bla bla.
Heather says being in the hospital when the article came out makes it more special. (weird thing to say)
Heather has 2 seizures, lasting 5 and 9 minutes each. Cardio and neuro and hospital MD are “all on the same page. Oncology and endocrinology have been harder to get in touch with.” She will see Emory seizure clinic in March if she can’t get an earlier appt.
More fun happy hospital selfies with friends!
Heather comes home from the hospital but she is unnerved knowing another seizure could happen at any time. Neuro is going to try and get her into the seizure clinic sooner. Potassium is still low and she’s waiting on home health to get orders from cardiologist to resume infusions. (This confirms that the infusions are saline for POTS as this is the only condition the cardiologist treats her for)
One day later Heather is feeling bad again.
No hospital this time though, just a few seizures. Home health nurse came to do her infusion because BP has been “very very low (90/60 ish)”
Heather also makes time for a cute sponsor post on Instagram, featuring a teddy bear to hold her infusions. Cute little sick baby with her cute little sick baby toys.
The next day Ryan calls 911 and they end up at hospital 1.
Same day they are back at home, EMTs and hospitals gave her meds to stop the seizures and more fluids then sent her home. She is going to call neuro for another appt. (I’m confused how she can just have random episodes that require going to the ER this frequently and then meds stop the seizures. Why can’t she be given these rescue meds to keep on hand? I’m pretty sure they give her Ativan.)
2 days later, back in the hospital, “not in the ICU but in the unit right next to it” lol. Heather says please pray, it’s been a bad day.
Another photo posted the same day from inside the hospital room. Heather’s board has her at Northside Hospital. “TESTS: LABS 0948-0954 ACTIVITIES: HEART MONITOR PHYSICIAN(S): IMS, DR. PUHALOVICH” Puhalovich is a neurologist.
Heather says she had a 29 minute seizure & rapid response was called, and she had 8 seizures while admitted to PACU the night before. Rapid response was a “very bad experience.” (that's crazy, I thought it was supposed to be pleasant) Heather says she is in pain and she’s cried a lot. Emphasizes that she has NON EPILEPTIC SEIZURES and are not caused by an electrical impulse in her brain (sort of) but affect her body the same way and are still seizures. (Everything I can find online says that this condition is psychogenic and is treated with psychotherapy.)
The next day Heather has a near 30 minute seizure, her cortisol drops below 1.0, and she has 8 total seizures. But she’s fine and able to smile whenever visitors are there!
The following day’s update starts with Heather saying she’s been trying to decide what to keep private vs public, which is always a good sign when you're a liar. She woke up in the middle of the night with severe nausea, sat up in bed, had a seizure, fell out of bed, and had several more seizures back to back. She probably has a concussion. So she didn’t go home today, she says.
More med adjustments. She’s not allowed out of bed.
They can't send her to Emory (Hospital 2) so she has to wait in line for the seizure clinic like the plebs. Also something is going on with her heart. She’s worried about being discharged and being home alone. (if this is really a concern wouldn’t home health set her up with caregivers? I’d like to think so, at least)
Heather got her own shitty pink hospital gown so she can be the most special little princess in the hospital. It has a Venus symbol with devil horns on it and says “well-behaved women rarely make history”. Lol. OK. She posts selfies in her new pink gown, one serious and one smiling, with a caption about medical PTSD and “white coat syndrome”.
She says the first hospital she went to this time (hospital 3, NGMC Gainesville) told her everything was all in her head, that she was faking and her seizures weren’t real. Nurses didn’t check on her during the seizures and they laughed at her. Even when her stats were dropping? Heather even cried coming out of the seizures and they didn’t care.
The hospital where she is now wants to find answers to her seizures that ARE real and her cardiac problems and how it’s related to the POTS and lymphoma. Trying a lot of new meds and some help but most don’t. They won’t give her any more IV pain meds since she can’t have them at home “so now pain is a problem.” (her mouth works? Her stomach works? How does she normally take pain meds? I think you just like the strong stuff)
Heather comes home from the hospital, has PT, home health visit, and a cardio appointment. 10 seizures throughout the day. Says this is their new normal for a while. Cardio appointment went fine she says, refilled prescriptions and continuing saline infusions “as long as they continue to work.” (what about the heart problem from the hospital?) Heather needs rides to appointments since she’s not supposed to drive, and she updated her wishlist. There’s always time to update the wishlist!
Someone comments asking what kind of seizures Heather is having and she says grand mal. Yowza!
At an endocrinology appointment, Heather falls out of her chair and has 5 seizures before the wambulance takes her to the ER. She gets rescue meds and “sleeps them off”.
Heather graduates from college and delivers cookies to the first responders “who have saved my life these last few weeks”. (are these seizures life-threatening?)
It’s a great day but that night Heather has 15+ seizures and is taken to hospital 1. She gets pain and rescue meds and Heather says she has been fine ever since, “just sleepy.” Luckily the next day she was still feeling well enough to take pictures with Santa!
Heather has a neurology appointment and, in her words, “got pretty upset about nothing being able to be done and I had 4 seizures after. I do in fact have a very bad concussion that’s confirmed.” Good news though - after calling the Emory seizure clinic every day, she was able to get in earlier.
It doesn’t go as expected. Heather says she has to see a neurologist before she can see a PNES specialist, and the neuro couldn’t do anything for her except refer her to the PNES clinic. (as far as I can tell from the Emory website, they do not have a separate PNES clinic or team. This is also the first time Heather describes her non-epileptic seizures as PNES specifically - this does confirm Psychogenic Non-Epileptic Seizures. From everything I can read about PNES, the only treatment for it is psychotherapy. Heather never mentions this. I can only assume that any doctor would recommend this to her when epilepsy treatments don’t work.)
Heather says the neuro told her that hospital 1 kept bad records and hospital 2 needs their own because of it. The neuro ordered a 48-72hr EEG at hospital 2 so they can show the clinic how many seizures Heather is having.
She makes a post about all the gibs she’s gotten from the wish list. She ends it with “Thank you Hope for Heather family.”
2 days later we get an update from Ryan that Heather is in the hospital, not as bad as before, but will be in for a few days and won’t have her phone. No visitors. (3 guesses where she is?) Group members post wondering if she’s ok.
After a week we hear that Heather is feeling better.
She makes a group post when she comes home but remains cryptic about the circumstances.
Heather is begging for money and items 24/7 but somehow she can still afford to buy presents for the kids in the Aflac center (where she was never a patient).
After the new year, we find out that Heather spent Christmas in a mental hospital. She says that her physical health has affected her mental health for the last 6 years and she hit her tipping point. She’s ashamed and embarrassed about it but she doesn’t want others to suffer silently.
Heather takes a break from posting for most of January, at the end of the month she updates the group that she’ll be admitted to Emory (hospital 2) for a day long EEG. She’d love company. Also posts the GFM link again.
A few days later Heather says she’s been in survival mode for over a month. She says Emory was supposed to keep her for 3-5 days (even the ambulatory EEGs are only 2-3 days?) but she was only there for 6 hours before being told they got what they needed. Heather feels dismissed and disappointed, here she says they’re non-epileptic seizures with no cure and “a possible mix of epileptic ones” but they couldn’t justify her stay to insurance. Interesting. Could it be possible that insurance knows something Emory doesn’t know?
A few days later Heather posts on IG smiling and wearing a #stopthestats shirt with a caption about suicide prevention. She says she spent 7 more days in a behavioral clinic “with little help.” ????? Reminds me of Polissa. No help came (in the mental hospital).
Ryan loses his job due to downsizing.
Heather makes a collage of hospital bands that she’s saved over the years with the word HOPE written in the middle. She says she cried when she was done making it.
Heather has her port checked, says it didn’t go as planned, I am pretty sure she had a replacement.
Still floundering with the Mary Kay.
The next week, Heather has a doctors appointment and faints, then has an allergic reaction to the snack they gave her, which caused seizures. ER trip, wambulance, fluids, meds. Then she goes to the fire station that night, seizes again, wambulance, ER, meds.
She’s worried about Ryan finding a job and potentially losing her health insurance. (She probably ought to quit going to the ER, then)
Miracle UNG (formerly HOPE club) features Heather in a post, saying she’s fought through SLL, daily activity impacts caused by POTS, and has had 97 blood transfusions over the course of 7 years (I think she is counting IVs and infusions. Or just making this up. AFAIK this is the first time she’s mentioned a statistic like this but she’s never discussed needing a blood transfusion.)
Heather’s port is infected, pain, relentless seizures, no job for Ryan. Gib money please.
Infection worsens, there’s a hole in her chest cavity she says, and they’re pulling the port to place a PICC temporarily. She’s worried because she’s unsure whether home health can run her fluids thru the PICC. (reminder, she only had the port for IV saline fluids for POTS)
Her procedure is at Wellstar Kennestone, Hospital 4. She says she had a few seizures afterwards and in pain even with meds. She names her PICC Priscilla. (Here is where I get near confirmation that the port was replaced earlier, as she refers to it as ‘Polly 2.0’) Smiling hospital selfie.
Heather makes a post for National Eating Disorder Awareness week, where she admits to having disordered eating, specifically restricting. So she’s anorexic. She says that her urge to restrict was brought on by her serious illnesses. (Doubtful considering her mental health issues predate her physical health issues.)
Surely restricting couldn’t be negatively impacting her health. Surely not!
On the same day she posts in the FB group that she’s been in the ER nearly every day and the seizures haven’t stopped and no one knows what to do. (the only recommended treatment for PNES is psychotherapy.) Heather sat in her neurologist’s office and cried until they offered to refer her to the Mayo Clinic. She says they do think she has a mix of epileptic and non-epileptic seizures. (if that’s the case why aren’t they treating the epilepsy?)
A few days later she goes out to a drag bar for her birthday with friends. No medical issues reported.
Rare disease day gets a special post where Heather mentions her SLL (not a rare disease), EDS (a goddamn epidemic lately), adrenal insufficiency, and the type of seizures she has. She says just because it’s rare doesn’t mean it’s fake. (????)
Heather is admitted to the hospital after having multiple seizures & hitting her head on concrete during the first one. Clumsy dizzy girl. After EEG and tests with nothing new to report she goes back home.
Her birthday post gets reposted by Mighty Well for all the spoonies to fawn over.
COVID starts and Heather shares an info post from CHOA for her “fellow oncology kiddos.” (Heather has just turned 23 years old.)
Only a few days later she’s sick with an upper respiratory infection.
She shares a Rally Foundation post saying Heather “had scans last week and did not receive the news she was hoping for.”
Heather says they’re getting desperate for money because they’re currently uninsured. She’s negative for flu strep and RSV. She posts a selfie with her cannula and her PICC line showing, saying “what about the high risk people?”
Heather says her lungs are in rough shape so she already uses oxygen. (Heather has never reported chronic respiratory issues of any kind. She hasn’t been seen wearing the cannula for several months prior to this photo.)
She’s still preparing for PT school but is diagnosed with pneumonia, and probably COVID.
Heather says she received a lot of negative feedback about having a false negative Covid test, and that she was hurt and didn’t want to update again. (Heather has a habit of reacting very harshly to criticism or questioning of any kind. Usually she will make an emotional appeal to the group about how badly her feelings are hurt, and either stop posting temporarily or threaten to stop posting. Of course, these posts always have several ass-patting comments about ignoring haters and trolls.)
She reposts the GFM link on her profile, saying they owe $2000 for ambulance rides, an $8,000 bill from Hospital 4 and $9,000 bill from Hospital 1, among other bills. Heather says it’s not to get pity, “just to give insight”. (Insight so that people will take pity on her and give her money.)
She makes another hospital bracelet collage with the word BRAVE on it. She says her life isn’t full despite adversities, it’s full because of them. Sure.
She employs the same fundraising tactics she used for dance marathon, asking her FB friends, “If we hit my goal of $10,000 I’ll be able to pay both ambulance bills and afford my medication I vitally need. Can you help me get to $1000?”
She makes a FB fundraiser, saying she can’t get vital medicine because they’re uninsured. They have bills going to collections.
This one raised $1,690.
Heather celebrates the 14th anniversary of TWLOHA, the organization that saved her life.
Another defensive group post about how some people think they’re scamming because Heather posts photos while claiming to be sick in the hospital. Heather says some photos were taken days or weeks prior to posting, she does have a terminal illness and she does in fact stay in the hospital a lot of the time. Anyone who thinks or says otherwise will be blocked and removed from the group.
She does go home a few days later, still beggin.
A week later we get a super masturbatory spoonie pic talking about “may we think of the high risk people (like me)” and wearing a shirt with all her diagnoses. AI & EDS & PFD & POTS & PNES - no SLL listed. This is one of many hints that the SLL diagnosis (if even real) is just a happy coincidence for Heather; it has no effect on her quality of life, as she admits in the future. “May we remember them and thank them and stay home for them.” God.
She's reposted by "spooniesistershop" where she got the shirt from.
Heather asks for prayer requests, she’s been in extreme pain out of nowhere, whole body aches, seizures. Neck swollen, lungs burning.
Another IG post about how she’s better at quarantining than everyone else. Calls herself a cancer kid again (Heather is 23 at the time).
Heather and Ryan have an outing in masks, 3 days later Heather goes out to eat with classmates.
She and Ryan have a roommate and Heather has already latched onto her.
PT school starts virtually in May.
It’s also EDS month, Heather posts a webMD pasted definition and includes several photos of a completely normal range of motion.
May 15 is the 6 month mark of her first hospitalization (Nov 15) and the beginning of her recent mental health decline. Started with being unable to get her seizures under control (medication isn’t effective on PNES episodes, the only treatment is psychotherapy. Episodes are not life-threatening.) Heather says it’s the day her old life ended and her new one began. OK.
10 days later she’s posting pics of a beach vacation with a new classmate. No health issues reported.
Heather knows this is odd and takes to IG to explain that she’s sick all the time, even when her symptoms disappear. She says she’s open for any questions or comments (not true).
Heather has a PET scan, she needed time to process, typing through tear filled eyes. The scan came back with “a new mass, well masses.” She says Mayo refuses to take her case, not much they can do. She asks not to share this info “as you all know I’m a very private person.”
The next day she has 7+ seizures, becomes disoriented and agitated after, and rips out her PICC line… before arriving at the doctor Heather has already decided another port seems to be the only option. Also her roommate gets a shoutout “for diving right in the emergency situation.” As if she had a choice? Literally less than a month before she makes her roommate come to her rescue. Poor roommate.
Unfortunately Heather gets another PICC, placed in her other arm.
She has an ultrasound and then posts to the group asking if anyone wants to shave their head with her. She says “that should tell you how my week has gone.” Very direct implication that Heather is stressed out and not undergoing treatment to cause hair loss.
Unfortunately the next day she is back in the hospital with a pulmonary embolism that started in her PICC line (the PICC line that she only has for saline infusions for POTS that she claims she got from chemo as a teenager, when she did not have cancer). We learn on JUN 15 that Heather’s lungs are filling with “gunk” and fluid and she’s taking 6 different antibiotics and steroids.
The following night JUN 16, Heather is placed on a ventilator, a friend posts an update in the group on JUN 17.
Heather miraculously shares a post on her Facebook profile the following day JUN 18 (prayers for Rally Kid Heather)
The day after, JUN 19 the friend posts another update, her team is working hard but her stats keep dropping.
JUN 20 Heather posts an eyes-closed hospital bed selfie and a caption about how this admission was different because she couldn’t have visitors and she “was dying alone.”
I've been dying because I have a whole set of insane hospital selfies that I compiled from this visit, and I couldn't figure out where the hell they went in the timeline. Well, I JUST REALIZED THEY GO RIGHT HERE! I'M GENUINELY EXCITED TO SHARE THESE
Again Heather posts asking who wants to shave their head with her. She says tomorrow (June 26) is the first cut and it will probably all be gone in the fall. Bet.
Apparently she found a way into the Mayo Clinic so she’s going there soon “to find a better treatment plan there with more positive outcomes.” Says her hair is falling out and it’s very traumatizing to her.
Also the full moon aggravates her seizures.
Says her meds are hitting hard, “this relapse is kicking my butt.” Sure.
Heather shows off a new shirt about being in the “chronic mets club” and she says she’s relapsed again, worse than before, but she’s a warrior and survivor.
Another Tshirt fundraiser through CustomInk, two different designs this time. $2350 total raised from these two.
Heather reminds everyone that she was on a ventilator and it was scary.
July 13 2020 Heather debuts a shaved head, eyebrows and eyelashes intact. Thanks to everyone who loves her, buy a Tshirt.
.She’s happy with the number they’ve sold “but we can do better!” What a weird thing to say.
Heather has a photoshoot to commemorate her new Bold, Bald, Beautiful head. PICC on display, toob dangling in the middle of summer. Lots of asspats.
Heather says her “cancer-versary” is July 24, 2013. (Heather was diagnosed with SLL in 2018. In 2013 she had been diagnosed with IBD and PFD.) She says it’s been 7 years and now she has no hair (she has eyelashes and eyebrows) she’s gained and lost friends and “trusted the wrong people” but she’s a warrior. In a roundabout way she implies that she’s facing palliative care and the end of treatment options. She claims over 100 blood transfusions, over 200 platelet transfusions, over a years worth of hospital stays, comorbidities as a side effect of “poison chemo,” a ventilator, port, 2 picc lines, multiple relapses, and infections that should have killed. The drama.
Heather tells the group that the doctor has decided not to remove the lymph nodes that have masses, meaning “for chemo” (more chemo? I don’t think she meant oral chemo) and “a possibility of radiation.” She finds this out on Jul 24.
Mayo appt has to be moved because of covid. Jul 26 she asks for prayers, and Jul 27 she’s complaining of “the side effects” and it’s one week before finals.
Heather asks this info to stay in the group, saying “I fight a quiet battle and I don’t plan on changing that.” Are you sure about that?
Heather gets a new wig and friend Summer comes to visit. Heather says she needed her and thanks her for “always coming when I ask”. Eyebrows intact.
Heather says she can’t control what people think and she won’t play victim and “pull the cancer card.” She says she’ll fight like hell for her health and it’s better to have loved and lost than never loved at all. Hmmmm I wonder what happened.
Heather has a pool day with M, who has actually lost her hair to chemo twice, and posts a caption about how close they are.
She goes to visit CHOA and laments that she’s not young enough to go there anymore.
The next day, Heather announces her medical withdrawal from PT school for the 20-21 year, she intends to begin again next fall. She will take the year to go to Mayo and work on her boundaries.
When they get to Mayo they wind up extending their stay so Heather can have time to see every specialist over the span of a week, even though they don’t have enough money to afford food and gas for that long. They also have plans to return once a month for the following 3 months.
Heather wants a photographer friend to take photos (free of course) for childhood cancer organizations to use in their marketing materials. (But she doesn’t want to be famous or remembered, she fights a quiet battle.)
Heather is taking a CMA course while she’s not in PT school. Again says here that she was diagnosed at 16 (she was diagnosed at 21) and took comfort in mentoring younger kids in the Aflac unit (Heather never stayed in the Aflac unit).
Heather posts a selfie for childhood cancer month, she’ll fight for her remaining time on earth, no matter how long she’s here. Eyebrows and eyelashes intact.
OK I'm gonna wrap up here because I'm a little drunk and sleepy. Believe it or not, it still only gets worse from here. Yee and haw.
