Undermining efforts

Over the last month some pretty big things have happened and shifted. For example, do you guys know about chocolate? I just discovered it! Previously, I was never into chocolate bars. It was just ... too much. A little chocolate sauce? Fine. Chocolate cake? Sure. But eating a hunk of chocolate never appealed to me. Until a month ago. Dark chocolate with sea salt? Heaven! In two weeks I ate an entire bar that flavor. I like to take a little piece and suck on it after a meal. How did I go so long without enjoying this aspect of life? Has everyone else known all along?

Hey, did you know you can inject human growth hormone into your skin to stop the aging process? Yeah, just get some vials of it and inject yourself. No problem. Oh wait. One small, tiny problem. IF YOU HAVE CANCER! Why, you ask? Well, while HGH stops the aging process, it has the word "growth" in it, and do you know what it grows? Cancer cells! That's right, if you inject yourself with human growth hormones, it will speed the growth of cancerous tumors, cancer cells, and you are basically fighting all the chemo and other drugs you're ingesting in an effort to kill the cancer.

The anger I felt upon finding out she's been doing this was so overwhelming that I couldn't have Laurie in our place. To think of how much work we've put in to help her, and she's doing something to make it harder? She's Jewish - when she dies it'll be a closed casket anyway. So why is she speeding up the death? Nobody will notice how good she looks once she dies; we'll just be sad she's dead. Apparently she is friends with a neighbor who is a doctor who gave her these vials. I asked Josh why the guy is not being reported to the AMA or whatever.

Last Thursday, Laurie went to chemo, and had another allergic reaction, complete with being rushed to the ER section of the hospital. She was released about four hours later, but this is terrible. The best chemo cocktail to kill her cancer is one she's developed an allergy to? Not such a happy new year. When Josh and I were talking about goals and stuff for this year, at first it was things like getting into Cuba, doing the NYC marathon, and then it took a very dark turn. "I don't even know if my mom will stay alive the whole year!" What do you say to that? Especially when you've just found out she's been undermining her own treatment? 

Back in the saddle. Except not quite.

Laurie restarted chemo. The first week didn't go well. Then this week, they tested her blood levels (I guess they were testing something IN her blood rather than HOW MUCH blood she had in there, but who knows?) and they were way too low, so they wouldn't do the chemo.

When Laurie had her tumor removal surgery, they figured out how to grow the tumors artificially, and then tested about 90 different types of chemo on them to see which type worked and that's how they decided which chemo to use on her this go-around. It's different from the chemo she had last time. I guess it ravages her body more than the old chemo did?

I came home around 7:30 tonight, and Laurie was super pissed that her chemo-ing didn't happen today. She was slamming around the kitchen cooking dinner. Danielle whispered to me, "She's going to break something," but I pointed out we couldn't say anything. Half our kitchen stuff comes from her house.

After changing out of my work clothes, I went into the kitchen and offered to help. "I don't NEED help. What I NEED is for my body to WORK." Josh immediately zoomed over and pulled me away, while telling his mom he knew she was upset but she can't speak to me that way.

In sum, not a great day. 

My comfort or yours?

For Sunday night dinner, I am making an appetizer plate with focaccia, salami, prosecution, roasted peppers, a couple of cheeses and olives. Then we will have Italian Wedding Soup. For dessert I am putting out the apple pie made yesterday. When Josh heard what was for dinner, he frowned. "Why can't you make real comfort food?" Apparently his comfort food is Jewish food. But mine is hearty soups, and Italian food. I am stressed, I am unsettled, and I am seeking comfort food for myself. Josh can go make his own comfort food if he wants it that badly.

Laurie only thinks in black and white. Either she's definitely dying or she assumes she's fine and all this fuss is ridiculous. She veers back and forth between the two multiple times a day. It's hard to keep track. Lately she's been on the "after chemo I'll be dead OR cured but no in between!" bandwagon.

Laurie's scans came back showing both improvement and ... spreadage. (I don't know if that's a real word.) The doctor seemed pleased, even though the cancer having spread doesn't sound good to me. Apparently though, they can do surgery to cut out a big chunk of the cancer and that definitely sounds good. So that's happening Monday. Except before that can be done, the new fluid in Laurie's lungs has to be taken out, so that's being done today. After the Monday cancer-cutting, there's a three week recovery period.

Of course I just got put on a client Friday afternoon where we were told, "Expect to stay until at least 8pm each night." Great. I totally lied and told them a relative is having major surgery Monday and I need an hour to cut out and run to the hospital, so they are checking with the partner if that's okay. I am waiting to hear if it'll be allowed.

This is terrible of me, but I want Laurie to do her recovering from her surgery at her house, not ours. Obviously, I am feeling very selfish lately.

An extra boost

Tomorrow Laurie goes for scans to see how well the chemo worked. Josh met me at the front door and warned me today that she had an extra boost of crazy in preparation. Honestly, it's weird to think she might be dying. Laurie works out almost every day. Sometimes she'd skip the day after chemo. Aside from chemo side-effects, the only sickly symptoms she's ever had are side-effects of other medications taken to deal with either the side-effects of chemo or side effects of medication taken to deal with possibly dying.

Josh mentioned he might be going crazy. We are supposed to be going away for Thanksgiving, but that could change depending on what happens with Laurie. I am not sure that will be enough, or be soon enough. I almost wonder if Josh needs anti-depressants or anti-anxiety or something. My job with the crazy hours is supposed to end late next week and maybe couples running will help Josh. 

Over and exhausted

A week and a half ago was Laurie's last chemo treatment. Apparently it's customary to make this a big deal and celebrate it. The lowest number of hours I have worked in the last six weeks has been 73. So I basically had time to run out of work, go to the hospital and say "Congratulations!" and then run right back to work. Josh's dad suggested a family vacation to celebrate, so I packed Josh off and sent him vacationing.

I'm a little out of the loop due to work so am not sure of timing, but think she is going to get a bunch of tests done soon to see how well the chemo worked. Laurie had this sort of thing done maybe two thirds of the way through the chemo adventure, and the results were not pretty. So I don't have much hope that this round of tests will be uplifting.

Laurie is basically in deep denial and acting like things are fine. I don't know how to deal with that. Josh has said it's a huge relief she is back in her own home. I put him in charge of getting back the extra keys. His sister is off wherever. We are not clear where she actually lives, and I kind of don't care. At one point a couple of weeks ago, Josh told me, "When we have kids, she will never be allowed to babysit them." I just said okay, and didn't point out the likelihood of her wanting to is slim.

In sum, we are all exhausted. And kind of tired of each other. I don't know how other cultures do that thing so smoothly where multiple generations live together, and when people marry into families they move in with them. 

Bandanas and glasses

Laurie now wears a hat any time she leaves the house. None of us can see any hair loss, still. On Tuesday when I came home from work, Laurie was dressed as a Crip with a blue bandana on her head, and an outfit that matched it. In a complete coincidence, I was wearing a red dress. Alex took one look and started humming that Jets/Sharks song from West Side Story.

At dinner we found out that Laurie had ordered her bandana online. We were all trying not to laugh as we gently let her know in the future she could buy them at the drugstore down the street.

Josh told his sister she's got to get out and spend less time at our house. She is breaking and neglecting our stuff (yes, I realize a lot of this is stuff Josh stole from his parents' kitchen, but at least we take good care of it) left and right. We are down half a dozen drinking glasses, two wine glasses, and more. She routinely (still eats all our food) neglects to close the refrigerator all the way. She uses knives (like, chef knives) to slice open cardboard boxes and leaves them all over the house. Including on the floor once.

Please do not worry that she will be homeless, because she won't. She can go stay at her parents' house. She can go stay with friends. She can get her own apartment. But she can not stay here, breaking our things and making messes. We are trying to transfer her from being a family member who should make herself at home, to a guest. Who sits primly on the couch and doesn't go in the kitchen. Ever.

P.S. Thank you for the article. I showed it to Josh's dad. 

18 Weeks

There are 18 weeks of chemo. I don't understand so much of what is going on, and it feels like I'm just walking around with my jaw on the floor staring in shock at everything.

Laurie is taking anti-depressants. When she's taking them regularly, she's sort of okay. Then she thinks she's okay, goes off them, and spirals horribly. Laurie's seeing a special cancer therapist, but is super phony-positive to the point that Josh went with her one day to be like "Here's what's REALLY going on." He told me Laurie walked in and greeted the therapist by gushing "Look at you! That is the most DARLING pantsuit ever!" Wtf is that? She's so deep in denial about what's going on. Laurie also keeps going through all these crazy diets super fast, to the point it's hard for us to keep up. One week she's not eating meat, the next week only vegetables. My head is spinning.

Josh's sister has moved back, sort of temporarily. She's ... weird. She's a yoga instructor. Who seems to rarely shower. She travels a lot. She talks a lot about being real, in a way that implies nobody but her is. I am keeping my mouth shut because this is Josh's sister, but you know what's real? The $12 of organic strawberries I bought that you scarfed down while at our house.

She also has that rich-people dismissive way of talking that I hate. Everyone is spending a LOT of time at our house and she will say things like "Sam, I think my mom would like some tea. And I'll have some too, thanks."

Laurie has chemo on Mondays and then around Thursdays feels well enough to run around own. She spends the early part of the week at our house. Please don't ask me why - I don't know. She lays around watching Netflix, napping, snacking and talking to us. Yesterday Laurie announced to us, in the middle of the day, that she wanted carrot cake. Josh ordered a cake at Whole Foods and told me he paid over the phone and could I pick it up on my way home. The bakery lady showed me the cake when I went to pick it up. It said FUCK CANCER across the top. Um. There was no way I was going to hand this to Laurie. I can not use the word fuck in front of them.

So that's what is going on. Every day when I come home from work, I have no clue who exactly will be here. Or what mood they'll be in. Sometimes Laurie thinks she's going to kick cancer's ass, and sometimes she's convinced she's dying. Last week she was convinced she was having a heart attack and trying to insist she be driven to their vacation house two hours away. My head is spinning on a regular basis. 

Care through cooking

Probably not a huge surprise, but I'm not too mushy. This woman at work was talking about communication styles, and love languages (which is the corniest term I've ever heard). Like how guys try to fix problems? That's how they show their love. I guess I'm a guy deep down? I am a doer and not a sayer. I show my love through food. Gifts of food, acts of service.

I took the idea of apple matzoh pudding and made it into muffins and gave them to Laurie. Because everyone will eat either the top or the bottom of a muffin. The idea of doing a late seder was tossed around, and I scouted out all the food and spent last week walking around with my lists. Nobody ever definitively said "Go!" so it's probably not happening. Except at any moment it might? We're probably waiting to hear from the doctor in China before a decision is made. Word on the street is that if the biopsy results were disastrous somebody would have gotten in touch, and it's sort of a "no news is good news" situation. I thought the whole point of going to Texas was because of fast turn around times though, so wtf China doc?

Tonight I made meatloaf and smashed potatoes with asparagus. Josh stood in the kitchen watching me while we talked, and when it came time to dig my hands into the meatloaf mixture and mix it, he got skeeved out. Admittedly, it's not like Ghost with the pottery wheel. Josh refused to believe that I've made this for him before. "I'd have remembered seeing you do that." In the winter I probably make meatloaf once a week.

Now I'm laying in bed trying to come up with good comfort food for tomorrow.

The longest week

Last week Josh's mom flew back to Texas and got biopsies. She flew back on Thursday. There are no results yet. This confuses me, since I thought the whole point of going all the way to Texas was that their hospital gives results quickly. It stresses me out that if it really IS cancer, it's just sitting in Laurie's body, growing bigger and bigger each day. It's hard to understand how she is not just screaming out the stress every second of every day. How she keeps all her freaking out inside is incredible.

This week results should get announced. We are hoping and praying it was a freak misdiagnosis. Laurie claims she feels fine. She looks fine. Her only change is that now she's taking one sleeping pill and one anti-anxiety pill. Maybe that's what's keeping her from screaming all the time.

Josh and I have had a lot of morbid discussions about health and death and stuff. We're like really fucking grownups now. 

Cancer is confusing

So they left for Houston today. Passover was canceled, then switched, then canceled, then I got asked to "throw together a seder meal" for Saturday, then it was downsized. Making decisions is a hard thing to do when you're worried you're dying of cancer. But they left today. Even though I'm worried, I'm also kind of relieved to be honest. It's just been so high-stress all week.

Apparently Laurie got stuck with some shitty doctors, and today Josh spent an hour trying to explain to me why it might not be cancer at all. I can't tell if he honestly thinks this or is just trying to convince himself. This is what I have pieced together from the last week:

• Laurie started coughing and couldn't stop so when she ran into a pediatric PA friend of hers, she mentioned it to that woman, who (rightly) said, "Sounds like something you should see a real doctor about
• Laurie saw a real doctor who did a PET scan, pointed out a bunch of black masses, and announced cancer (I am a little confused about this - if I couldn't stop coughing I would expect an X-ray of my lungs to happen, but whatever.)
• She went then to an oncologist (who Josh referred to as The Oncology Bitch) who told Laurie, "Yeah, that's cancer. Anything over 10 millimeters (maybe a different size-word, I forget) is cancer. This black mass is 4.6, this mass is 7, this mass is 3.5... and this is the protocol for cancer treatment. Case closed." When they asked her why she was saying it's cancer if she's saying anything 10 is cancer but each mass is under 10, she wouldn't answer. 
• This is the point when I got told what was going on, and Josh made a slew of calls to get his mom an appointment with someone else local, plus at Anderson. It turns out that guy did his residency at Anderson and late last week when Laurie met with him, he suggested doing some tests but he was going on vacation and could meet with her to discuss the results two days after they come in, which would take a few days after the tests. So when he heard she got an appointment in Houston, he told her to just go there. 

Apparently at the Houston hospital, they can get results in minutes or hours instead of days. And any care, whatever she needs, can be done there. Plus the last local doctor here said that if she can get her treatment, whatever it may be, in NY, he has experience coordinating with them. 

So it seems like priorities have shifted dramatically. Obviously cooking in my kitchen was not kosher. They didn't care about using different dishes or anything. Nobody cared. I gave Josh two packages of Passover food that would travel well, and the name of a kosher deli in Houston. Right now they are planning to come home on Friday, but that's tentative. Josh is hoping the masses are benign and can be taken out with tiny needles (he called it something else) that would leave tiny scars.

It's good that we had last week to process and talk Laurie out of working with the bitchy oncologist. It gave us time to shift her thinking. Where it used to be a mindset of "I'm going to die soon," it's now more like "We're going to find out exactly what the hell is going on and then treat it and kick its ass, and I have now aligned myself with kind, knowledgable doctors I trust and will follow their protocol to the letter in order to get better." I am glad we had a week with Laurie - I feel like we sent her to Houston in a great mindset and much less hysterical. She was basically making me feel hysterical when she first told us. 

And during Passover, too

Today Laurie told us she has stage four cancer. That it started out being ovarian cancer and spread to her intestines and lungs. They are talking about going to some cancer hospital in Houston, Texas next week. I am a little confused by this - isn't Sloan Kettering supposed to be like, the best? Plus, wouldn't a NY hospital be more capable of helping a patient during a Jewish holiday than a Texas hospital? Or maybe they'll just skip Passover this year.

This is kind of shocking. How do you go from being fine to having stage four cancer? Shouldn't you first have stage one? And two and three? We knew she was sick but didn't know what exactly was wrong. Josh even joked that it might be "dental work" she was recovering from. He is beyond devastated. 

Dumb drama queen

Alex got sick last week. I think it was like a mild flu. She then got better and had no fever. Then on Friday Alex woke up, coughed, and decided she had the flu again, but worse. Except she had no fever. We had a huge screaming fight with her insisting she was on death's door and me insisting she needed to suck it up and go to school.

It was the dumbest fight we've had in a long, long time. I don't know why I was digging in on this. Ultimately I told Alex if she was so sick that she couldn't go to school then she needed to see a doctor since she'd been sick for over a week. So she went to the doctor. Where she was diagnosed with a fucking sore throat. And got told she was a smidge dehydrated. You know what she was prescribed? Hot water with honey. No shit. I am disgusted by her. 

Pneumonia and me

This morning Doug checked and decided I’m doing great. Happily it doesn't hurt when I'm inhaling anymore, but he told me the pneumonia is still there and I’ve just adapted to it. That must be why I am still exhausted and everything makes me out of breath. I still shouldn’t overexert myself, no lifting over 10 pounds, and no flying for a while. I was too embarrassed to ask if that meant I shouldn't have sex.

After that, I emailed another note to work, and got this in response from my manager: I don’t want you to come in until you have a clean bill of health. Colds and flu abound in all offices so don't rush back. That is really a relief. I feel better enough to work. From home. Part time. Between naps.

My sisters and cooking [insert dramatic sigh here]. They can cook. Not as well as I can, but they can cook. They don't like it the way I do. If I'm around to do it, then they don't want to. When Josh has taken me on vacations, I think they cook simple things. Like, I make pasta and from that ravioli. Portions of it get frozen. They'll throw a portion in boiling water and call that cooking.

Alex made a big batch of soup, and applesauce. Basically I eat those and oatmeal every single day. Sometimes Dani makes me a smoothie for breakfast. When you can barely taste anything you don't care what you're eating. You just eat whatever is put in front of you.

I am my pnuemonia's bitch

I tried to work from home Tuesday, but it turned out sitting in a chair AND breathing was too hard. Today was Attempt Two and it still didn't work. My eating has been terrible all week. So has everybody else's, I think. Danielle asked me what to make for dinner one night and all I told her was "something in the crockpot." So she made the filling for apple pie in it, and then they all ate that for dinner after ordering a pizza.

When I went to Doug, after he diagnosed me he gave me a note for work. Apparently this is a thing? Like so they don't think you went on a vacation but claimed to be sick? I emailed a pic of it to all 16 of my bosses, plus an HR person.

When you compare Thursday's health to Monday's health, it seems like there's no hope of getting better any time this month.

Where's the progression?

I got pneumonia. It is a little confusing how this happened, because normally you get bronchitis first and then it turns into really bad bronchitis. Nope, not in this case. In this case, I noticed around lunchtime that I didn't feel quite right, brought home deli-bought soup that didn't get eaten, went straight to sleep and woke up slayed by pneumonia. Josh was so worried about how my breathing sounded that morning that he said if I didn't go to the doctor he would call 911 on me claiming I'm too fat for him to carry downstairs to a cab so they should send their strongest EMTs.

Today was my first shower since Thursday. Today was also the first meal I ate sitting upright and not in bed since Thursday. And by "meal" I mean applesauce. Let me just say, the whole pulmonary process inside the body is really complex. Breathing is like the hardest and most tiring thing I've ever done in my entire life.

Work didn't happen for me on Friday, and I don't think it's happening tomorrow either.

Two down

Alex sounds like what contagious would look like if it had a face. You hear her cough and just want to pour buckets of Lysol down her throat. She stayed home today and didn't leave her bed, which was stocked with tissues, books, water, and cold medicine.

This morning Josh popped into her bedroom while I was getting ready and came back out shoving something in his pocket. Later I found out he took some of her medicine. It didn't save him. When I got home from work he was asleep on the couch with a box of tissues on his belly.

Now they can be best sick friends. Tonight I made applesauce and chicken soup. I told Danielle to get out while she's still healthy.

One down

In the middle of the night Alex woke me up. "I can't breathe." So I gave her my inhaler and went back to sleep. Apparently she just sat there for a few minutes, before waking me up again with the same complaint. I gave her my inhaler again and this time watched to make sure she did it right. We sat in the dark staring at each other. Alex shook her head. Right as she started to say, "It still isn't working," I could tell her lungs opened up. I sent Alex back to bed.

This morning she woke me up over an hour before anyone's alarm was supposed to go off. "I don't feel good." So I told her to stay home. By the time I'd gotten to work she'd texted me twice - that her throat hurt and that her chest hurt. When I called Alex, she cried. I called Doug to make an appointment but the woman told me nothing was available until tomorrow afternoon. I took the appointment to reserve it, and told Alex. She told me she couldn't wait that long and announced she was taking over my inhaler.

I called the office back and asked them to bump me up if anyone cancelled because my sister was really uncomfortable. After work when I was a block away from home, Doug called. I kept walking, and ran up the stairs instead of taking the elevator to get to Alex while he was still on the phone.

I gave Alex my phone and told her to talk to Doug. She sounded so pitiful. I went to change out of my work clothes and Alex came in and laid across the foot of the bed. She told me Doug was emailing a list of things to buy at the pharmacy. I forwarded that to Josh and an hour later Alex was drugged up with Mucinex. Hopefully tomorrow she wakes up better, because Al has a test.

Clearly a sign I should go back to Europe immediately

I've come down with something. Summer flu? Food poisoning? Whatever it is, I didn't have these sorts of problems in Europe. Obviously I should cross the pond back there to get rid of it.

Raining and pouring

Josh broke his fingers playing basketball. I woke up with a sore throat Saturday morning and now have a cold. This morning Josh was making us an omelette and dropped the frying pan right as he was about to plate the food. The comedy of errors just continued that way for both of us throughout the rest of the day. When we compared pathetic moments, it was agreed we'd just order in pizza.

I paid, closed the door, and in handing the box to Josh we both dropped it face down on the floor.

Convinced I would slip in the shower, hit my head and die, I am in bed dirty, having not showered. We're both thinking of staying home tomorrow. Not making any sudden moves. Not touching anything that can break, not using the oven or stove or knives. Maybe we'll order matching helmets.

Because four would be too much

Tomorrow I'm going to school. Not because I feel better enough to, but because I missed Wednesday, Thursday and Friday and just worry that a fourth day in a row would be too much. Today I took a nap in the morning, and then another nap at dinner time. On Saturday I went out for four hours, but it was about one hour too much, and had to take a cab home, then take a nap mid-afternoon.

Little House on the Prairie episodes have been my near-constant companion. Josh even watched one with me at one point. He made Vitamin Water ice pops for me. I love how on Little House they play the "uh oh" music when something "bad" is about to happen, and the bad thing is always like ... someone decides to make eggs late at night and they create a ton of noise in the kitchen. Their bad things are just always so wholesome, it's so cute.