Part of the journey

I'm hesitant to write this post, and yet, I am using this blog to document all of this journey Dominic and I are on.

I share this not in any attempt for sympathy, but to serve a larger story. The story of how we treat our health care, and how very big the journey really is.

I was over the moon with our airbnb I snagged for the 100 days we're required to live within 20 minutes of the hospital. I spent hours trying to locate a place within walking distance, as I did not want to be stuck in traffic on a freeway should Dominic be sick along the way. We gloated as we were door to door in less than 10 minutes. We crowed to the nurses how happy we were with our place. I made sad faces to the other families in our shoes who had not found such great places.

Then. The reality set in. I waxed poetic on a yoga group page how when we drove by to see the place before moving in, there was a yoga mat hanging over the porch upstairs so they must be good people. Never mind the champagne bottle right next to it. Never mind my experience with yoga people includes like any other group, the good, the bad and the ugly. And. As it turns out, that bottle was a harbinger of ugly.

The first week we were here was Christmas. I assume it was perhaps not as noisy because the kids went home for the holidays. We'd hear blaring music throughout the day, but just suck it up. Then, New Year's Eve, the party lasted until 6 am. I kid you not. They did go to a bar somewhere in the night, and I caught a couple hours sleep. I thought when I was awakened by shouting and thumping and blaring that it must be midnight and they had been home and quiet since ten, and were just celebrating and didn't mind so much being awakened to ring in the new year. Alas, it was nearer to 2:30 and clearly, the clown posse had just rolled in from the bars. I frantically tried to sleep through the wump wump, and finally, at 6 am I gave up and got in the shower. It was all quiet when I got out. I've said this already, but if I had known taking a shower would shut them up.....

So. We didn't say anything. It was New Year. A one-off, right?

I tried to imagine, in the afternoons when elephants would pace for hours at a time in clogs on wooden floors that perhaps a fantastic chef lives upstairs and is just working magic in the kitchen. It didn't really ease my irritation. But I tried.

The dryer is broken. It doesn't shut off. I set a timer when I put the clothes in. I remember when I met the host of the airbnb how shocked I was when she showed me the shared laundry facility and there was rat feces on the wooden counter and the floor. She knew we would be immunocompromised, and need a clean space to live. I think she hoped I wouldn't notice. But I did. And was so worried about having a place to live, I didn't say anything. It's heartbreaking to think this is how so many people live all their lives. So worried all the time and not being able to speak up for oneself. Anyway.....the dryer doesn't shut off. One night, the noise of the dryer woke me at 2 am. Had it been running since the evening? Was the person doing laundry in the middle of the night? I lay there thinking about the full lint trap every time I'd done laundry. I lay there thinking about the dilapidated space the decades old washer and dryer was inhabiting. I lay there thinking about the fire that had decimated our city, and nearly burned our own house down. Finally, at 4:30 in the morning, I slipped on a jacket and scuffed out to the laundry room and shut the thing off.

I did this again, albeit earlier the next night. And again the following night.
The next morning, I ran into an upstairs neighbor scurrying up the back stairs with her pile of laundry (she honestly looked like a cockroach to me). I introduced myself, and in a considered way, told her that I'd been shutting the dryer off for her at night and did she know it doesn't shut off, and I hope she's okay with me touching her laundry to make sure it's dry. She looked at me wide eyed and said she thought it had suddenly started turning off again. She'd be sure and tell her room mates...She asked if we'd moved in down stairs and I explained to her that my husband has just undergone transplant surgery and we are living here to be near the hospital. I didn't tell her what kind. For all she knew, he could be laying in a bed right below her with a brand new heart or liver. Whatever the case, I told her we are here to recover and be medically safe.

And with that information, she proceeded to host a party, less than a week after what I thought was a one-off, one that lasted until 4:30 a.m. complete with thumping music, people smoking and yelling outside our window, and what sounded like wrestling and kettle bell dropping. They hit the bars from around midnight to after 2 and we hoped they'd actually been reasonable and shut it down at midnight. Nope. They're gone just long enough that we could fall asleep and be jarred awake upon their return. I later found out it only ended at 4:30 because that is when the landlord called them to shut it down. Who knows how much longer they would have gone. Till I got in the shower at 6, I assume.

I'd met our other downstairs neighbor last week. I really like her. She's friendly but not nosy. She and her husband have two small boys who sound like they are well loved and cherished. They had Christmas lights set out front and lots of Christmas cheer all around their small entrance when we moved in feeling beat up and ready to relax and recover. I told her we love to hear the boys playing outside throughout the day. I was warned by our airbnb host that the children next door might be noisy. The babies noisy??? The neighbor and I commiserated about the noisy upstairs and how we don't like to complain but....something's gotta give.
Here's what's funny to me. The woman next door is kind of rough looking. She has short punkish hair, tattoos in obvious places like right across her neck, while the baby girl upstairs when not looking like a cockroach looks like the girl next door, all blond and blue eyed and generic looking.  Just goes to show about books and covers....

I've contacted my host. We may be looking to move. I'm not sure yet. I met with the neighbor earlier today, and heard she and a third neighbor contacted the land lord who "texted" the group to shut it down after 4 am. We'll see how things get resolved.

Meanwhile, Dom and I are kind of miserable today. We dragged our tired bodies to the infusion center, and I could cry for my husband undergoing so much pain and misery even without selfish animals upstairs. (I mean, come on, you can't be ignorant enough to not know blaring music and yelling and thumping on hardwood floors is not going to be heard. Especially since they've been complained about before.)
We told everyone who would listen how miserable we were. Except the other transplant patient we lived next door to in the hospital. I didn't complain to her. Until she told me her situation. She opted for an Extended Stay nearby. I believe it was setup by the American Cancer Society. She found a cockroach in her place. (An actual one and not a scurrying human). She thought I'd found a great place and I clarified that for her. The ACS is frantically searching for a new place for her and she is prepared to have to move weekly or even nightly as different hotels can accommodate. And none of it is free.

The Social Worker and our Transplant coordinators are furious about the cockroach. For an immunocompromised person, a cockroach can mean death. Flash to the rat feces in our shared laundry facility.  Flash to me mentally taking inventory in our pantry and hoping we're at least cockroach free.

So. What to do with all this information....I don't know. I'm processing. Most of the time, I try and see the good in things. And of course I have a never ending well of gratefulness that so many people have made it possible for us to even be able to live here at all. I don't know what we would be doing otherwise. People are turned down for transplant if they cannot find a place to live nearby. But I think about the stress of cancer, and transplant, and unemployment and dealing with medical insurance drama....and then this. I think things need to change round these parts. I'm wondering if I know anyone who is a grant writer. I'm thinking there needs to be a place for people to stay in these situations. There used to be, but management in the hospital decided they didn't want to be liable. There are facilities available to patients at Davis, but not to Sutter. The most help available is through the ACS, and they are extremely limited in resources. As revealed by the cockroach story. I'm thinking that after such a furious fire in Sonoma County, and so much poison in the air, there's going to be a heavy influx of people needing treatment for cancer. I'm thinking a smoothie and cutting out sugar and eating garlic and whatever other wonder cure there is out there is not going to stand up against the ailments that are going to come out of our toxic environment.

I'm not trying to be doomsday. I'm just reading the signs.

I'm thinking that I'd like to be able to create an airbnb system for people who are in our shoes. I'm thinking the need is only going to get greater. I'm thinking this journey is not mine alone.
I'm thinking a lot right now. I'm thinking an aspect of this journey is still only in its infancy. I'm thinking there's so much to be grateful for.

*Addendum: We barely heard a peep yesterday. Whether it was because they were too tired to move or gone or because the landlord read them the riot act, it was blissfully quiet. We slept like babies. Now, if they can just keep up this quiet for a little while,  I can handle another party in the future (just not less than two weeks in the future.) We shall see.
*Addendum 2: The woman I'd met from upstairs came and apologized. It took a lot for her to apologize.
*Addendum 3: I think the woman upstairs apologized and got my number primarily so she could text me less than 2 weeks later to tell me it's her birthday weekend, and she'd be having a few friends over, but she promised she would not let them turn the stereo on. I, in what I thought was generosity said be as loud as you like until midnight. Which they did. We were awake until it got quiet around midnight. But, as I'm sure you've guessed, around 2:30 and here we go again. This time, I bundled up and met with the usual suspects smoking on the porch and asked to speak with anyone responsible. Cassie came out. Did I tell you her name is Cassie? I didn't, did I. We share a name. When she introduced herself as Cassie, I said I'm a Cassandra that has been called Cassie. She said she is a Cassandra, but she only pronounces it Cassondra. For those of you that know me, we've long had fun with my name, and when people ask me which way I prefer, I say I don't care, just don't call me Cathy. (Which a family member of a relative did for many years.) But she is a Cassondra. Got it.
I digress.
There I was, on the porch of strangers at somewhere around 3 in the morning, feeling a little faint because somewhere these past eight months I aged eighty years and turned into a little old lady. I explained to Cassie that had she been honest about her intentions, we may have rented a hotel. (Not true, really, but...) I did buy ear plugs, that turns out were worthless. (I didn't buy the blue ones as a wise friend recommended.) I felt like the crotchety neighbor that everyone in the party probably hates now. I felt like the get off my lawn guy. I felt like a horrible party pooper, and at the same time, the people on the porch had been told about Dominic, and yet there we were. Discussing the music blaring through our apartment in the wee hours. They can't know that the fabulous amazing music that sounds so great to them is only an insidious thumping by the time it gets downstairs.
The music was turned down this much, (for a visual, please see me pinching my thumb and forefinger completely together. That space between my fingers is how much they turned the music down.) I texted her at 3:30 and basically let her know her word means nothing to me now. And then the music stopped. Just before 4.
And I'm reminded again that so many people have no other choice but to live this way constantly.
Like the family of 4 living next to us downstairs, trying to get by.
Urban living. We've been spoiled in the country.