Update July 19, 2020

 Hey all. I've been asked for updates on Amanda's treatment. Sorry i'm so bad at this. Update below.

The worst part about me being so bad about regular updates is that i can never remember what the last update was. So some of this will probably be a "Previously, On XYZ Soap Opera" type thing.

 

I believe i posted about the blackouts she had after her second most recent treatment. She was having difficulty walking more than a dozen paces at a stretch without getting lightheaded and, occasionally, blacking out. She fell in the parking lot at the oncologist after quick appointment where i stayed in the car. The oncologist thought it might be related to the white cell stimulator she was on, and discontinued it. Meanwhile the owner of our RV park lent her a wheelchair for trips to the bathroom or around the park. I think this was all in my last update, so everything after this should be new information to most of you.

 

Our new toilet finally arrived shortly after, and i discovered it needed an adapter It took a few days to get that, but it was installed and in use before her next scheduled treatment! So no more needing to run out to a separate building every time we need to pee. Her white cells were not high enough for her next treatment, so that got pushed by a week again. She had her last round of the heavy drugs a couple weeks ago, and was basically incapacitated for several days after, a usual. She didn't actually have any blackouts after that one, but she did feel like she was close to having one a few times, and has had to stop to rest even just moving from one end of the RV to the other sometimes.

 

After that, she got stronger and better. The lump is definitely shrinking. She's been greenlit to start the next set of drugs (the authorization department jerked us around for a week or so though, for some reason), which should be a lot easier on her body. The new drugs are not generally known to mess with white blood cell counts, so hopefully that should not be an issue going forward. This isn't 100% guaranteed, though; there have been outlier cases where the white cells are affected. All we know about that right now is that it's not *likely.*

 

Her family came to LA to visit last week. Her parents, sister, niece, and uncle rented an AirBnb in North Hollywood, with a guest house and a pool. Yes, we had concerns about them traveling and coming to visit during the pandemic, and we addressed them as best as we could. We moved our things into the guest house, while her family occupied the main house. Everyone stayed masked as best as possible while interacting, except in the pool. While swimming we attempted to stay as socially distant as possible. In the end it probably wasn't enough...but. It was very important for everybody to have this time together. It's the first they've seen each other since her diagnosis, and being 2000 miles away has been extremely difficult on her. She needed this visit. It did wonders for her spirit. And while battling cancer, that is absolutely as important as medicine.

 

We're still in the waiting period between treatments. She starts the new drugs on Wednesday. Hopefully things go as well as we've been led to believe.

 

This one is going to be difficult for her for another reason, though; it's going to be the first one she has where i'm not around to take care of her. I'm flying back to Wisconsin on Tuesday due to unavoidable business (our renter moved out and i have to get the house cleaned & prepped for the new tenants, get the lease signed, etc etc etc). I'll be wearing my modified construction respirator the entire time i'm at the airports/on the plane. Fortunately, Alyssa is available; Amanda and the animals will be basically moving in with her for the whole week i'm gone. There was almost a wrench thrown into this plan when Alyssa had contact with a coworker who tested positive for Covid, and was put into a mandatory 14 day quarantine, but she's done with that now and has not developed any symptoms; she will be getting tested to be sure before Amanda moves in.

 

I think that's basically where we're at right now. I do want to once again thank everyone who's donated to our GoFundMe, that campaign has been a truly humbling experience for us and, due to our difficulties with California's disability and unemployment programs, the generosity of our friends and family really is what's keeping us afloat throughout this. It's a debt we can never repay and all we can do is gush with gratitude towards you at every opportunity.

 

We also want to thank everyone who's sent postcards!! I'm very sorry we haven't written any personal thank-yous yet but they are very much appreciated and always a bright spot in her day when one comes in, even the ones from my friends who don't know her personally. Thank you.

 

I did already post a personal thank you to the person who sent us an envelope full of stickers, though, because we immediately stuck them on our faces and had to take pictures. So...that sort of tomfoolery is also greatly encouraged.

 

Thanks again everyone. You mean everything to us and we hope to see and hug you all in person someday when the world isn't ravaged by disease.

 ---

 

I'll just gently drop this link here again. As usual, i'll just say your support is immeasurably appreciated, but we don't expect anything from anyone. There's a lot of other things going on in the world right now that need attention, and a donation to your local BLM activists or people directly impacted by Covid-19 in our name is just as appreciated.

 

https://www.gofundme.com/f/help-out-wolfie-and-trevor

Update June 10, 2020

 I haven't posted an update in a while and a few people have been asking for one. Again, sorry, i've been bad about this and i've been pretty focused on current events.

First of all, i want to once again thank everyone who's contributed to the GoFundMe campaign. As we continue to be screwed over by the disability and unemployment system due to having lived here for less than two years, your generosity is literally keeping us alive and is a debt we can never repay. Thank you.

Second, we hope everyone is staying safe through these chaotic times, between Covid and the uprisings. We have not been able to participate in the protests due to Amanda's compromised immune system, which i absolutely cannot risk bringing Covid or anything else home to. Please stay in the streets extra for us. As safely as you can.

I don't remember exactly when the last update was so i'll jump in with the last few weeks. Amanda missed the original date for her third treatment, two weeks ago, again due to low white blood cells. To recap, the white cell count in a healthy adult is typically around 5000. They won't administer chemo under 1000 due to a risk of developing leukemia. She was below 200. However, they finally cleared up the paperwork for the authorization of leukine, a drug which stimulates white blood cell production, so she started receiving almost daily doses of that. As a result, last week her white cell counts were over 12,000.

She got chemo last Thursday. This round hit her harder than the last two; she was up vomiting all night Thursday. She mostly stayed in bed and slept for days after. Saturday or Sunday she started to have pretty bad stomach aches, and ate very little. On Monday, she went in for her leukine treatment. On the way back out to the car, she blacked out and collapsed in the parking lot. I didn't see it happen. I was sitting in the car and reading a book waiting for her with the dogs, we were going to take them straight to the park after. Zuul got up and started wagging her tail, so i looked over and saw Amanda was coming, then looked back to my book to try and finish the page before we drove off. A moment later i heard another woman shout, "are you all right?" and i looked back up to see Amanda walking toward the car, from exactly the point she had been at when i looked away. When she got in i asked what happened, she said she had blacked out and just sat down hard, right where she was. She was only down for a few seconds. I still feel awful that i was right there and didn't see it and couldn't help.

After several impassioned recommendations from friends, colleagues, and neighbors, she finally gave in and sent me down to the local dispensary to pick up some medical marijuana. Many people have recommended it specifically to help with stomach pains and body aches related to chemotherapy. I got her a bag of low-THC, high-CBD, watermelon-flavored gummies. She took one and went back to sleep, but she says she thinks it helped.

Monday night she blacked out twice more at home. We still don't have a new toilet in the RV - it's been ordered, should be here soon - so she asked me to walk her down to the park's bathrooms several times during the night. She'd had trouble while washing her hands the first time she went after we came home, so she just wanted me to be there with her in case she fell again.

I woke up in the middle of the night to find her missing. I immediately sprang out of bed and started throwing on my bathrobe and shoes to go look for her, worried she'd gone to the bathroom and may be lying on the pavement somewhere, only to find her lying on the couch. She had indeed gone to the bathroom, and blacked out again right as she was getting back to the RV. She made it inside and collapsed on the couch. She said she tried to wake me up before she went but i was unresponsive. She didn't know how long she had been on the couch before i came to find her, but she thought it had been "a while." I can't be sure but i think i finally woke up because Zuul came to get me to check on her.

Steve, the owner/operator of our RV park, lent us a wheelchair to help her get back and forth to the bathroom. He keeps offering to put her/us up in one of his RVs with a working bathroom, or to park one right outside our RV so it's closer for her, but we declined. She'd rather stay in her own bed, and the bathroom's really not that far. Now that she has the wheelchair it's not that big of a deal.

Tuesday, she went in for her next leukine injection, and mentioned the blackouts and stomach pains. The oncologist recommended discontinuing the leukine treatments for now, as these are apparently known potential side effects. Hopefully those 12,000 white blood cells haven't all been decimated by the last round of chemo and/or that the few treatments she received before they stopped have helped grow them back enough to get chemo again next week. Maybe they can tweak the dosage so she can regrow an appropriate amount of cells without completely incapacitating her? That's a conversation she'll have to have with the oncologist next week.

Today she is feeling much better. She slept well last night and has been awake all day. She says she feels like a people. So it seems that the leukine was the issue. She still gets lightheaded and "sparkly vision" a little when she stands up, so i've still been carting her to the bathroom in the wheelchair, but it's an improvement.

In other news, the mold may be under control but we've also now had to deal with a bedbug infestation. We had exterminators come in but we don't think they took care of the whole problem, we were still seeing them for a while, even after the three-day period that it supposedly takes all these chemicals to work. We haven't seen any in a few days but we've got new itchy spots popping up which seems to suggest they're still here. So that's lovely.

As for me, i've started running again this week, which is my primary method of stress relief. 4.5 miles Monday and today. It's been two months since i've run at all and four since i've gone that far. My injuries or muscle strain or whatever it was seem to have cleared up. So hopefully i can keep up with that, because i really need an outlet right now. I've been pretty burned out from dealing with everything.

As always i'll close with addressing everyone who wants to help out. I'll gently drop the GoFundMe link in the comments again but as always we don't expect anyone to donate, we appreciate everyone who has and it's really saved our butts but don't feel pressured. And if you only donate to one cause this week or this month, i don't even think you should prioritize us - there are lots of good lists going around for bail funds for the protesters or charities on the ground working for effective change and reinvestment into marginalized communities.

Otherwise the postcards are good - i mentioned last time that she really loves receiving postcards from friends and family, and a few of you stepped up and answered that call. Once again the mailing address is [redacted].

Long update, i know. Thanks everyone for everything you've done for us through this. It's been a journey. Stay safe. Love you.

Update May 8, 2020

 Hi friends, i've done a poor job of posting updates on Amanda's treatment. See below.

I haven't posted an update on Amanda since April 2nd, and i'm sorry. So here's what the last month has looked like.

 

After being jerked around by the system for a while, in no small part due to that clinical study i mentioned, (which she ended up being rejected from anyway), she finally had her first round of chemo three weeks ago. They say the effects of the first dose are usually felt about 2 days later, but they hit her after about four hours. She felt like complete shit and basically didn't leave the bed for a couple days, and after that she could only walk or stand upright for short periods of time for about another week. She was feeling pretty well back to normal almost 2 weeks later, just in time for her second scheduled dose. She went in for a blood draw the day before. The results came back that her white blood cell count was too low to receive chemo; from what i understand proceeding would carry a high risk of causing leukemia. So we rescheduled to this week. 

 

Meanwhile, her hair started falling out, which she's been having a hard time dealing with. Within a few days of that starting, her scalp was hurting so much just from the weight of the remaining hair, that she made the decision to shave it off. With Molly's help over Zoom, i buzzed her down to 1/2". She's more comfortable now, but still adjusting to it.

 

So she was supposed to get her 2nd round yesterday, but again her white blood cell count was too low, and they've rescheduled to next week. She's getting very anxious to continue treatment. She definitely felt like the tumor had shrunk a bit after the first dose, but now she says it's starting to cause pain in her boob again, which she hasn't felt since the first round.

 

That's where we're at right now. Hoping to get things back on track next week. She's trying to up her vitamin c and protein intake, since that's the best advice on upping white blood cell counts we can find, although the link seems tenuous at best. Otherwise there's really nothing we can do but wait for them to bounce back.

 

People are always asking what they can do to help, and i always say there's really not much. I'll gently post the link to the GoFundMe Elizabeth set up for us again, hopefully without seeming pushy, i know everyone is hurting right now. It's been over a month and we're still absolutely stunned by the support we've received through that. Right now we're doing okay financially, in no small part due to the GoFundMe, but her short-term disability claim doesn't seem to have been approved yet and i still haven't gotten my unemployment figured out - someone from EDD is supposed to call me within the next few days, so hopefully i'll get that sorted soon. So that's probably the easiest thing, but i was thinking that a more personal thing you could do is send a postcard. One of her Reservoir Dolls MRD teammates sent a couple postcards a few weeks ago and it really meant a lot to her. I haven't told her that i was going to suggest this online, and she doesn't go on Facebook more than about twice a year, so at this point it could still be a great surprise.

 

Thanks again everyone for all the love and support we've received through this. I hope you're all staying safe and sane out there.

Update April 2, 2020

I want to once again express our heartfelt thanks to everyone who's donated to this. We've just crossed 2 months' rent and that is a huge weight off our shoulders. We honestly didn't expect any of this. Some of you I haven't really talked to in years and I'd love to rectify that but i'm awkward and anxious about that sort of thing in the best of times, and these are certainly not the best of times. At the moment i'm just so emotionally tapped out and drained from all this cancer business and all this Covid business, i can't even check my 60+ FB notifications. I'm not likely to check or respond to messages for a while either, and i'm sorry. I'll post an update below.

Amanda did not start chemo yesterday as we had initially expected. I guess we were misinformed? But also the orders haven't cleared yet? We're being told it will be by the end of next week at the latest. She's signed up for a clinical trial, testing an immune booster that's common with treatment of other cancers to see if it's effective with breast cancer. We were worried that would hold up the start of chemo, since the onboarding process for that was expected to take 3 weeks, but fortunately (we think) she finished all the pre-chemo testing necessary for that yesterday, weeks ahead of schedule, while as i mentioned the actual chemo start is going to be later. So hopefully that's working out, and hopefully she gets the treatment rather than the placebo. To clarify: she will still be receiving the usual chemo treatment, it's just this extra thing that may potentially be a placebo. But, it sounds like it's very helpful for other cancers, so we're hoping it's helpful for her too.

Yesterday we had 3 doctor's appointments. I've already been on the phone today scheduling more. We were told she'd be assigned a case manager, which we hoped would be a person who would, you know, manage the case, making phone calls and scheduling appointments and treatments for us. In fact she's been assigned two case managers, one from the insurance company and one from the medical group, and so far all either has done is call her and ask more questions that she's already answered a dozen times. So i don't know how that's helpful.

 

She had her port placed yesterday, which is great, it's easy access to her veins for blood draws and injections, but she's still getting used to having a titanium tube in her chest (she told me that earlier today she unthinkingly gripped something between her forearm and chest briefly and that did. not. go. well.). She hasn't even started the chemo yet and she's already having unusual body aches and pains. Particularly where the port has been placed. She says her chest feels tight, like her skin doesn't fit, and...well, it's probably because it doesn't, they just embedded a titanium tube in it.

 

I think that's all the news for now. Like i said i likely won't be checking my notifications for a while, but please don't let that stop you from leaving encouraging messages from her either on this post or on her own page.

 

We love you all. Thank you for supporting us through this. I know these are weird and rough times for everybody. Hope everyone is staying safe.

Amanda's Original Post, March 22, 2020

[original post by Amanda]

 Hi friends. I'm afraid I have some bad news to share. Several weeks ago, I was diagnosed with breast cancer. It's at least stage 2, possibly stage 3. In addition to the main lump, it has spread to 8 lymph nodes, but no further so far. I'll be starting chemo on April 1, and having surgery sometime after that. It's difficult being so far away from friends and family. Trevor will try to keep everyone updated since I am bad at keeping up with Facebook. I love you and I miss you all. I am looking forward to kicking cancer's ass, and I hope everyone is doing well in these strange and uncertain times.

 

---

[Trevor comments, Mar 23, 2020 7:19 pm pdt]

Thank you everybody for your kind words. A lot of people have been asking how they can help, and honestly we don't really know what to tell you. We hate to ask for money, especially in these strange times where so many people are losing their jobs and are financially uncertain themselves, but, well, my whole industry is shut down and i haven't found work for weeks, and Amanda will likely be taking time off during chemo. So our friend Auntie "Elizabeth" Matter set up a GoFundMe in our name. Please, don't feel obligated in any way, but if you're so inclined, we appreciate anything you can give.

 

https://www.gofundme.com/f/help-out-wolfie-and-trevor