If you're interested in following Julie's story check out her website & Caringbridge sites.

The AirBnB event Julie refers to is "Sangria & Secrets with Drag Taste".

For more information on her local support group and Stage 4 resources:
BAYS (Bay Area Young Survivors)
BCA (Breast Cancer Action)
METAvivor

Episode Notes:
[00:01:08] I remember feeling so kind of envious that they were entering this New Year with such optimism. And I was starting off the year wondering if it was time to get hospice involved and to stop treatment for my breast cancer because had been through so many treatments. And at that time I was so sick.

[00:02:03] I was diagnosed in 2016, so I had early stage breast cancer in 2011 and then went through surgery and chemotherapy, had a few years of quiet and then had a reoccurrence and it had spread to my bones at that point and then 2018 then spread into my liver, which is a much more lethal diagnosis than when it just is in your bones.

[00:04:01] And it was weird as the months went by and the people I knew were experiencing job loss or wanting to just tear their hair out because they were working from home with three to four kids running around home schooling at the virtual learning at the same time. And once I stabilized on the clinical trial, we actually were we were doing pretty well. I mean, we, of course, were missing, gathering with our friends and family and being able to have a birthday party or go to dinner. But just being healthy was enough to make everything else easier to deal with.

[00:05:13] But I also had, like some feelings of gratefulness that I was actually getting to spend more time with her. And those feelings have continued through this kindergarten virtual learning. I mean, some days, of course, like any normal person, it can be extremely frustrating trying to keep her on track with her work or just knowing how much she's missing out on in terms of the social emotional growth that they have when they go into the classroom. But I was not totally looking forward to dropping her off for six hours a day from Monday through Friday. So I feel like we got I am trying to at least appreciate this and to at least be grateful that I am getting this extra time with her and that I'm here for this. I mean, when you experience a severe illness that really puts you on death's door, I mean, it just it still continues to be just amazing to me that I'm here and feeling so good and just looking back like, wow, that really happened. And it didn't happen. It didn't, I didn't die, but it came really close. And and now look at me and look at my life. And then also for any cancer patient, there's that. Well, and how long is it going to last for?

[00:08:11] So he ended up going back into the hospital with the symptoms of covid. It came back positive and then after only about a week in the hospital, he actually ended up passing away from from the disease.

[00:08:48] My dad was in his 80s and did have multiple health conditions. And as his cardiologist put it, we were going down this road anyway. Covid sped up. Things go much quicker, but that this was the direction his body and his diagnosis were we're headed anyway. But like I said, if regardless of how or why he died, the inability to grieve together as a family.

[00:09:35] Yeah, and she was worried about the risk not only of me bringing something to her, but to myself, since I am an active chemo patient. But now that the with the vaccinations, my mom's fully vaccinated and so are my husband and I. So my mom just flew up from Ohio last week and this is the first I've seen her since my dad's passing.

[00:10:31] in those first weeks when things were first, you know, becoming evident that the virus was here and there was so many unknowns that did feel a little riskier or even just going to get my labs drawn or go into the pharmacy.

[00:12:11] So overall, I did I did feel pretty safe. I would say. I know a lot of people in my breast cancer community that felt a lot more, that were a lot more worried about it and they were really pushing and advocating to be able to move up higher on the vaccine list. Because of that, they said, you know, we can't stay home, we can't work from home to get our labs and get our prescriptions and to get our chemotherapy. We have to go in there. We have to be around a lot of people. So they were advocating to have us get a higher priority here in California than we originally did.

[00:13:26] And a lot of people find that once they are metastatic, being part of BAYS isn't as - it doesn't give them the same fulfillment - because it can be kind of tricky to be dealing with your metastatic issues and, you know, listening to people who are newly diagnosed. It just you've been through it so many times. You've met so many people, you've heard the same things. And you just they're so worried about recurrence. You know, anybody who's a stage one or stage two breast cancer patient, I mean, they're terrified of it becoming metastatic, spreading beyond their breast to other parts of their body. And they're terrified of that. They're going to die of this disease. So sometimes the relationships between people who are an early stage patient in a metastatic patient can be tricky.

[00:14:17] Know for me, I've known a lot of the people in BAYS for a long time now, and I've continued to be find great joy in my relationships with them. But I just know, as in general, it can be kind of hard for some of the metastatic women. We feel like we're their biggest fear. So so it is nice to have two separate groups that can meet.

[00:16:09] Yeah, I also when I was younger, I thought, oh, gosh, I wish I had been alive before. I would have been out there marching. And I was ready for, you know, things to happen in my life to get me out there on the streets. And I have I have attended protests, but it did hold me back this year. Having been immunocompromised, I didn't really feel safe going into going to a march or protest with my status like that. [

[00:18:06] I do hope that when there's, you know, this that's not over with, that a lot of racial reckoning to continue that as there's more events in the future that I hopefully will feel more comfortable myself being there health wise and bringing my child along, because I would really like to introduce her to that.

[00:19:10] Kind of freeing to have an empty calendar. As much as I love my social life, sometimes I can feel a little busy. So it was kind of nice to glance at the calendar and say we have nothing going on.

[00:19:30] I joked that it was a terrible time to have a bucket list during a pandemic because you're not going to get to go see the Great Wall of China or go to New Zealand or anything during last year.

[00:21:03] But that was one of the things that made me really realize that my dad was not going to be here for that much longer because he even in the midst of the wedding, he really had a hard time accessing a lot of joy because he was tired and he was in pain.

[00:22:22] was going to make it there. And as that day came about and in the morning, in the afternoon, I just started to realize there is no way I can leave the house tonight. There is no way I can make it there. And it was really hard for me to admit that. It's not easy for me to say I can't do something.

[00:23:29] I've had some times when I haven't been feeling well and pre covid when my friends have just come over and just sat with me, you know, they're really good friends that I feel comfortable laying in my bed sleeping while they bustle around, cleaning up my kitchen or my bathtub or all the different things my friends have done when they've been over.

Julie: [00:23:49] The community we have is insane. They are so helpful in so many ways, giving of time, giving them money, resources. If you're going to have cancer, having it with this group of friends is the way to go. [00:24:02][12.9]

[00:26:25] So we went ahead and decided that we would see that family freely in each other's homes without masks, knowing that we were being very cautious and safe outside.

[00:26:42] the change in my daughter, the change in her, she was very tearful there, just she would cry and say, Mommy, I don't know why I'm crying. I'm just sad. I'm like, honey, you and everybody else. Of course you're sad. Of course you're crying. This the sucks. But once she got to play with her cousin, it just she just lit up.

[00:27:17] I drop her off there on my way to chemo and she does zoom school with her cousin and then they get to play. And when I go to pick her up, she never wants to leave.

[00:27:34] And so one of the ways that we didn't feel as isolated was that we spent a lot of time on our sidewalk where the kids are roller skating, scooting, biking, and all the parents, all the children and parents are masked and we can stand apart from each other. Our own houses and bathrooms are right there. So if we need to go take care of anything. And so having that ability to just be outside with the multiple people on our block really kept us from feeling isolated like some people have had to feel.

[00:28:47] But for my own sanity, I've done a lot of Zoom's with my friends, which which I know a lot of people have a love hate relationship with.

[00:29:04] I know I have friends who are on Zoom all day long because they're teachers or they're in meetings and I'll just sign on in the evening with them. And just a half hour, 40 minutes, I'm like, oh, I'm done with this!

[00:32:12] But in general, I think just the slowed down pace of life I did really enjoy at the beginning. I really felt like it was a good reset for me to have nowhere to be and just to have so much time to devote to our household. Of course, then that being said, I don't think that as much as I love my husband, you know, he's not supposed to be everything to me. You know, I'm supposed to have other friends in the mix that I can do different things and talk to about different things with. So that was definitely one of the hardest things, was having so much time with each other and not having these other outlets.

[00:33:06] So him not getting to have that that break and get away and have do his do his own thing separate from the family. I know that was hard for him. And I'm looking forward to when he gets to take off to the airport by himself without us. I think that'll be really good for him.

[00:33:27] I feel really guilty environmentally about the impact that our travel has here in the city. We bike and walk most places and we really try to be environmentally conscious. But flying is so bad for the earth. And so taking a break from that at least alleviated my guilt for the year. That was one good thing. That was a silver lining.

[00:34:29] Well I hope I continue to stay healthy, number one, because everything else doesn't really mean anything if I'm not healthy and and here to take part and enjoy it. I'm really looking forward to my daughter getting into the classroom.

[00:35:29] I hope we can still do things safely as we move to reopen more fully. I'm really looking forward to having some group dinners I love to eat and my my tastes are a little bit wider than my husband. So having more people to eat or things with something I'm really looking forward to.

[00:36:13] So all being able to be together at my mom's the summer is something that's really looking forward to.

[00:36:33] It's hard to live in that space of a hopefully I'll be here for years to come and there's no need to rush through and do all these things right now. But and I know it's not guaranteed to anybody, but statistically speaking, it's much less guaranteed to me. And I want to be able to do those things when I'm still feeling good, because if you put it off, you know, to when you know that your disease is progressing, then it's like, well, OK, now you know that you should have gone on a safari, but it's too late. You can't physically even make it. Not that I think we're going to go on a safari, although I would love to. And I had thought that I really wanted to try to save up for something like that. But I do think that that might be a little too much to plan for my body at this time. But but yeah, planning some kind of big trip is it's also something I'm looking forward to