Update March 17, 2021

 [Amendment to March 13, 2021 post]

Hi again friends, i meant to amend this post much earlier but the day has just gotten away from me. 

 

Amanda had a phone appointment with her medical oncologist this morning. This doctor was somewhat less optimistic than her radiation oncologist, but she did echo that if it had to be somewhere, the bones is the best place for it to be. Again, best worst diagnosis. Cancer is very slow-growing in the bones, and bones respond very well to radiation. They have 3 cancer drugs they're going to be starting her on, including the new drugs mentioned previously by the radiation oncologist, which it turns out are not more chemo drugs. She will also be on 2 supplements aimed at building bones and preventing osteoporosis. She may be on all of these for the rest of her life. Also, these carry their own less-than-ideal potential side effects, including possible osteonecrosis of the jaw, which is frankly horrifying. On the plus side, throughout these treatments, there will be more monitoring and surveillance on the progress of the drugs, to make sure everything is working as it's supposed to.

 

She needs to get some testing and other consultation done before she can start the new regimen, and there will be delays while we wait for insurance to authorize everything. Since it's "slow-growing" in the bones, they don't foresee the wait being a big issue, like it was with the breast tumor previously. Therefore, this does not impact our plans to visit Wisconsin. We're still finalizing the itinerary, i'll make a big post about all that soon, but the dates are set. We're leaving LA on March 23 and need to be back April 12. So, we are looking forward to seeing as many of you as we can in between those dates!

 

Sorry i haven't replied to any of the comments on this post or all of the PMs and texts i've received. These last couple weeks we have been overwhelmed with the weight of all of this. On Monday we tried playing video games and i just. Could not. I collapsed into a ball and held her and could not get myself to focus or do literally anything all day. I'm back up and running now but it's still difficult to concentrate on anything else. Please bear with me, i'm finding it especially hard to people.

Update March 14, 2021

 

This update starts out very bad. Please read it to the end though, it gets...less bad.

 

Amanda had her PET scan on Wednesday evening. It seemed like it went well, but she became concerned when they thought she was done, and then asked her to move into a different position and took an extra scan.

She already had an appointment scheduled with her radiation oncologist for Friday. They anticipated having the scan results ready by then, so she could discuss it with the doctor. Given that modern technology exists, though, and that Amanda is “a persistent little bugger” (her words), she knew the scans would be available online on RadNet as soon as they were finished. So she spent Thursday refreshing the page regularly, ready to pounce on that report as soon as it was available. The images themselves came up early in the day, but she doesn’t know what she’s looking at, so she kept waiting for the interpretation.

 

Shortly before our scheduled JackBox night with Nat and Cal, i took the dogs out to go potty. When we came back 10 minutes later, Amanda was crying, and pushed her laptop at me with the report open.

The cancer has spread to her bones.

 

Positive new lesions were found in four of her vertebrae and in her right scapula. This is a Stage IV diagnosis. Stage IV is typically considered a terminal diagnosis, incurable. Stage IV patients typically live an average of 2½ years after diagnosis.

 

Cal called literally minutes after we read that. Her and Nat got the full brunt of the raw pain over the next hour or so as we talked through what this probably means for us and the future. I started drinking. We each had an edible. We started calling and texting Alyssa. When the edibles kicked in, we ended the call and sat by ourselves, trying to manage our emotions, until Alyssa finally arrived. By this point Amanda was high as a kite and when the door opened she tactlessly shouted “Guess what! I’m going to die! The cancer is in my bones!!” And i could see Alyssa’s heart just drop straight out of her body. She knew she was walking in to bad news. But that was unexpectedly blunt. We each had another edible. Alyssa tried some scotch. We ate two packages of Oreos. We watched Into The Spiderverse and spent the night just trying to come to grips with this devastating new reality.

 

Some would argue that Amanda shouldn’t have gone looking for that report before having a chance to go over it with the doctor. They may be right. I might be one of them. But at least this way, we got all of our emotions sorted and out of the way privately, at home, before having to go into a doctor’s office and deal with it there. And also this way, we kind of knew what we were looking at and we were able to assemble a list of questions ahead of time. So, there are ups and downs to doing it this way.

 

The radiation oncologist was very impressed with her for having found the report, read it, and prepared questions. She said that she wanted Amanda to work for her. Once she found out Amanda is a vet, she said that makes sense, lots of vets tend to be like that.

 

So she went over the report with us, and she thought this was actually not a terrible report. First of all, she stressed, this is not a death sentence. Yes, it’s a Stage IV diagnosis, but we caught it early enough and the lesions are small enough that there is still a good chance they can be targeted and dealt with productively. The most likely outcome is that the cancer will become manageable, and Amanda will just have to be on medication the rest of her life to manage it, like diabetes or high blood pressure, but at least she will have a “rest of her life.” But honestly, curing it is still not entirely off the table; it’s just a slimmer chance. Amanda has chosen to cling to the “treatable” possibility; that definitely seems manageable and vastly preferable to dying at 35. We can still hope for “cured,” but she doesn’t want to get her hopes up too much.

 

As Drew put it, “this is the best worst diagnosis.” Still the worst because Stage IV, but the best Stage IV diagnosis possible.

 

So we have something we can work with at least. We’re still going forward with the hormone treatments previously discussed, but there will be additional drugs added which may or may not include more chemo. The plan for radiation has also changed, they may be able to specifically target the lesions and hit them directly with radiation. So there’s still hope.

 

It’s really concerning to think about some of the implications here though. We’re lucky we caught this so early. But it only happened because Amanda was persistent and firm with her doctors. After we got that lab report, she wasn’t scheduled to see her medical oncologist for ten days yet; she called immediately and got the appointment moved up to the next morning. The medical oncologist never gave any indication she planned to get a new PET scan, that was something Amanda wanted and demanded and the medical oncologist ordered just to make her feel better. Given their track record for getting orders filed timely, Amanda gave them a two-day head start and then started calling daily to make sure that PET scan actually got ordered. We’ll never know if that persistence is actually what annoyed them into approving it so quickly, but we do know this is the fastest insurance has approved anything regarding her treatment in the last year. So if we had just gone along with the doctors’ recommendations, let the flow carry us, and just taken everyone at their word, we would be at least ten days behind, probably fifteen or more, in finding these new bone lesions. Would we have still “caught them early enough?” Would we have caught them AT ALL? 

 

Even with these new words of hope & comfort from the radiation oncologist, it’s still been tough to process everything that’s happened. These last several days since the moment we saw that report have felt like forever and an instant at once, we have no concept of linear time right now and if we thought we were in low-power mode before, we’ve gone past the empty tank and are running only on borrowed energy now. There’s still no guarantees. This is still a terrible diagnosis, even if it’s not quite as horrible as we first thought. But she’s not going down without a fight.

 

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I want to once again thank absolutely everyone for all the support we’ve received through this last year. I know there is so, so much going on, virally, politically, personally, apocalyptically, and everyone is struggling. You have all been amazing to us and we truly have only made it this far because of your generosity, be it the money, the meals, the care packages, the video calls, the virtual game nights, the postcards, and everything else. I’m just going to gently put this GoFundMe link out here again, as always expecting nothing but humbled and grateful for anything.

 

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

 

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On a more positive note, Amanda was able to get her Covid vaccine yesterday! She got the Johnson & Johnson vaccine, one and done, so she doesn’t need to go back for a second dose. She should be considered fully protected from Covid (at least as protected as one can get) in about two weeks. She’s definitely feeling the effects of it today, she’s very tired, her non-surgery arm hurts now also, and she has a headache, but it’s a small price to pay.

 

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One last bit of news. We’ve low-key been planning this since December, for as soon as we had her post-op follow up schedule finalized. We’re coming back to Wisconsin for a visit. Originally, due to Covid, this was just going to be a small-scale, mostly hang out with our parents kind of deal. Given the news we’ve just received, though, we are hoping to see more of our friends and family. Amanda wants to hug everyone who’s willing to hug her. We know it’s not Covid-compliant, but we are seeking comforts in this moment, and if worst comes to worst... 

Update March 4, 2021

 

On Tuesday afternoon, we got the histopathology report on Amanda's tumor back from the lab. The surgeon, Dr. A, handed it to us and didn't explain anything. I don't remember if i posted the results of her surgery before, but the one thing she had really been hoping for was that she would get to keep most of her lymph nodes. After surgery we were told they had taken all of them. She was upset by this, wondered if it was necessary, wished it hadn't happened, of course.

 

The lab report revealed that of 26 lymph nodes tested, 21 were still positive for cancer.

That's a huge number, obviously. That's all of the sentinel lymph nodes and 3/4 of the axillary ones.

Furthermore, at diagnosis, she had one 35mm lump in her breast. What they ended up extracting in surgery was one 75mm invasive ductal carcinoma, plus an additional 70mm ductal carcinoma in situ (a pre-cancerous tumor). Her margins were clean but there are a lot of other little things in that lab report that sound nasty or discouraging.

 

She wasn't scheduled to see her oncologist for another week, but as we walked out of the surgeon's office, she called them immediately and was fortunately able to move the oncologist appointment up to yesterday morning, so she could explain the lab report to us.

 

The main takeaway here is that the chemo was not effective. It may have helped contain the cancer a little but it certainly did not kill the tumor, like it was supposed to. She felt like the tumor was shrinking during chemo, but during the four-month wait between the end of chemo and surgery, she started to complain that it was hurting again and felt bigger again. The doctors brushed this off as normal. They still can't tell us definitively if the longer wait contributed to these complications, but what is certain is that if the chemo had done its job, that tumor should have been dead and inactive regardless. Given all of the information we have currently, she would be considered Stage 3 now, up from Stage 2 at diagnosis.

 

The biggest concern right now is that cancer most easily spreads through the lymph system, so the number of infected lymph nodes is not a good sign. It's more encouraging that not all of them tested positive though, so it's possible the lymph nodes did their job and prevented it from getting any further.

They've ordered a new PET scan to find out for sure if it's been contained to the breast and the removed lymph nodes. We are still waiting for insurance to approve the PET scan so we can get it scheduled but we certainly hope that happens soon. If we don't hear anything today, Amanda's going to call them tomorrow morning and check in on it, and probably every day after that until they get their shit together and authorize the damn thing.

 

Setting the PET scan aside for the moment, this report still changes the way we're approaching her treatment going forward. She was originally expecting to get radiation after healing from surgery. Once they took the lymph nodes out, it was suggested she might not need radiation; now it has become definite that she will. The oncologist is optimistic that radiation will take care of any lingering cancer in her body. However, they have decided to be more aggressive with her hormone treatments. She was already expecting to be on hormone treatments for the next 5-10 years, but the stuff they were going to give her is not the strongest stuff available. However, to get stronger hormone treatments, she needs to be in menopause. They are going to be giving her regular injections to trigger an artificial menopause, which she will continue to receive until she goes into natural menopause. Given how young she is, that might be quite a while. But it will allow them to hit her with the most effective treatment they have.

 

This is all assuming that the PET scan comes back negative. If we find that the cancer has spread to other organs...that's a terminal diagnosis. Stage 4. At that point, further treatment switches from aggressively combating cancer to just making her comfortable and trying to prolong her life. We're trying not to think about that right now but it's a possibility that looms heavy over us.

 

By this point it should go without saying that we're scared. From where we started, this should have been an easily treatable, routine breast cancer case. And somehow it has become this fucking mess. In hindsight, yeah, we probably should have done surgery first and chemo after, which was what the oncologist recommended in the first place but the surgeon talked us into doing chemo first; if the chemo had been effective, he would have been right, and would have saved all but one of her lymph nodes. We had no way of knowing the chemo wouldn't work. It's useless to second guess the past at this point, so we're just focusing on moving forward. But yeah, we're scared.

 

There's still a couple things working in her favor, at least. The lab report shows that the cancer is still receptive to the hormone treatments, and her HER-2/neu status is still negative, which is good; those are the bright spots we're clinging to. Given everything in the lab report, the oncologist thinks there's about a 30-40% chance the cancer has spread. So the odds are still in her favor, but that margin is shrinking.

 

On top of that, we learned late last night that a friend and former coworker of hers died by suicide this week. That's been difficult for her to process, on top of the shock from everything else.

 

I don't have a good way to wrap this up. 

 

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UPDATE March 5, 2021 3:32 pm pdt

 

The PET scan is approved. We can call back in one hour to get it scheduled.

 

UPDATE March 5, 2021 4:28 pm pdt

 

Wednesday, 3:30 pm