a footnote in someone else's happiness

I shouldn’t have waited until Day 6 to say something to you, the two people I imagine might meander over here to read what I have to say from time to time. I owe you both an apology. 

That last post that was hanging around here since June 2020 for three-point-four years was "vagueBooking" at best. And the ensuing sustained silence may have insinuated that my brother was clawing his way through a serious medical swamp...from which he might not have emerged. 

He was. But he got out. 

I'm so sorry I didn't come back and tell you that he was ok. He is ok. 

That year—2020—was hell for a lot of people. And nobody who knew what was going on will ever be the same after having lived through it. Collective trauma and all that. 

For us, the stakes felt higher. Many people in my life took this approach: “Well we have to live our lives!” Or “sure but what’s the cost to our mental health?” It was especially surprising coming from the pastor who lived next door, but who knows what kind of stuff he was having to counsel people about.

Those are valid points! That said, all those folks had the luxury of assuming that Covid-19 would be a miserable experience, but they (and their loved ones) would likely come through it to the other side with their lives. Mental health is important, to be sure, but if your body doesn't make it, neither does your mind. 

We suspected that Covid would likely put my brother in the ground and didn’t want to take the chance, especially because my mom and I were his lifeline to the outside world. It felt as though every person I knew who was bitching about having to wear a mask didn’t actually give a shit about his life. Or what losing him might to do to mine, frankly. Eh, he has a pre-existing condition. What can you do? Those people are expendable, right? Certainly not worth being *uncomfortable* for more than a few months to try and protect. It's not like losing one of them could destroy a family or anything. And even if it would, that's somebody else's family and somebody else's problem. So all of us locked down harder than anyone else we knew.

Then we got smacked with something no one was ready for: That post I left you hanging on for three years? It had nothing to do with Covid. It was about a headache that turned out to be a brain bleed. 

The kid had to have a hole drilled into his skull so that the excess blood could be released and stop exerting pressure on his brain. Thank goodness it worked and he was ok.

We doubled down on our Covid-aversion measures. If we went anywhere at all it would be while re-breathing our own wet carbon dioxide, the mask digging into our cheeks and cutting into the backs of our ears. The alternative…the sheer idea of dropping the ball and letting something happen to him…just the possibility kept me up at night, even more so after this horrible virus sent my mother’s beloved sister--her person--to heaven far too early. And these kids? These amazing little imps were the only ones in their classes who stayed home then wore masks all day long for nearly THREE school years.   

Despite everything we did, in fall 2021 my brother stepped out to celebrate a close friend’s Very Important Day and BAM, it happened. He got Covid. And we had been right. It very nearly did kill him. 

I’m the one who had to call 911. To sit next to him for days in the overflowing ER when they couldn’t get a bed on a unit and bemoan the fact that the stubborn goat never signed a Power of Attorney so I couldn’t get him transferred to the hospital that actually knew five or three things about his complex medical history--and they were holding a bed for the guy. I had to relay all sorts of tenuous and terrifying information to my parents, going out of their minds at home; and to my husband, managing a fulltime job and two very small children (one of whom was still in diapers) at our house. Once my brother got a bed, my mother was at his side for the worst of it. And it was very bad. He was on the brink. The pandemic wasn’t anywhere near over for us. If I'm being very honest? It may never be over for us.

Somehow, he got through it. I’d be lying if I said he was ever going to be the same again (another myth about Covid—not everyone recovers 100%). I wish I could tell you some of the truly scary bits. But my brother doesn’t want me telling people his business. I’ve probably already said too much.

This is where I struggle: Yes. This happened to my brother, not me. His very supportive college roommates who live in different states, his revered colleagues and close high school buddies—who most decidedly are NOT receiving an average of 12 phone calls at any time of the day or night just to say whatcha doin' NOR are they dropping their spouses, children, work, obligations at a moment’s notice to sprint out the door because the call is coming from an emergency room—they are quick and loud to affirm: Yes! It’s HIS life. It’s HIS story! And if my brother doesn’t want anyone to know his business, then I need to respect that and keep my damn mouth shut.

I get it. I really do. He can't control anything about his health. So he keeps an iron fist around the information.

But…how am I supposed to continue being his emotional support animal on a need-to-know/need-to-tell basis? How am I supposed to jump off a conference call to answer the phone only to discover he’s bored or saw a funny meme or has a taste for Taco Bell or is craving Lemon Lime-flavored New York Seltzer brand soda we used to drink in the '90s that is no longer sold here or has a knot in his back or thinks he may be dying and doesn’t want to die or is tired of fighting and needs a pep talk…How am I supposed to manage that, while also trying to explain to everyone else in my life who has expectations of me that no, I'm not that lazy or scatterbrained, I'm just really tired and that pesky attention deficit disorder is probably to blame; no, melatonin does not work with my anxiety; I HAVE tried to meal plan--believe me--it fails when you can't follow through this evening, let alone know what might happen by the end of the week; I try to make sure the fridge is stocked and the undies are clean and the library books get returned and the kids' homework gets done and birthday party gifts are bought and the appointments are scheduled so at least my husband doesn't have to worry about those things, too...and I'm constantly failing...There's dishes in the sink and clutter piled on every flat surface in this house. How am I supposed to make anyone outside these walls understand when it's not my story to tell? This is not a week or a season. This is my actual life. And nobody gets it.

So I didn’t post at all. Because it isn't about me. It never has been.

What I can say is that I haven’t known any different since I was four years old. The guillotine that he could be snatched away has been over our heads since 1982, ready to drop with no notice. Every goodbye, every opportunity to give him something he wanted, every disagreement carried a silent “but what if this was the last…? Will you be able to live with yourself if THIS was the last…? It was hard for a kid to understand. I did grasp the severity of the situation, so I tried not to make a fuss. And especially now that I’m a parent myself, I don’t blame my folks for a single decision they made; they did and continue to do their very best, an amazing job considering what they have. Which is uncertainty and prayer.

I’m 45 years old. I have two exponentially rapidly growing small children who know that sometimes Mommy is gone for a long time without completely understanding why. This might go on for another decade and then I’ll have exponentially rapidly maturing teenagers who will leave this house and hopefully remember to call me on my birthday. Or it could all be over tomorrow. Then my exponentially rapidly growing kids might not look up from their devices long enough to see that I’m tangled up and lost in my guilt about what I could have done. They're accustomed to me going missing for stretches at a time. 

My friends understand that I sometimes can’t attend events because I need to be elsewhere. They agree, it isn't my story to tell. I really should be more respectful of my brother's privacy, for goodness' sakes, look at all he's going through. The ones close enough to see my actual life know that mentioning it to him will result in unfortunate repercussions for me. Those friends hear more of the story. And H. That man. He is the only one who understands what it feels like to try and, how does he put it? Sprint a marathon. And he's the one left holding the bag and keeping this chaotic ship afloat, solo, more times than is fair. Sure, he had an idea of what he was signing up for. By no means did that make it any easier.

Three years. I should have come back and told both of you dear readers that he was ok. Forgive me. Blame it on my ADD. For what it's worth, there were way too many details that needed to be redacted.

#NaBloPoMo

“Headfirst Slide Into Cooperstown on a Bad Bet” Fall Out Boy 

come down from your fences, open the gate

We moved to a new house two years ago, and location was the prime factor. Well, in the spring of 2021 get getting ANY home was the real prime factor, but we didn’t even look at anything that didn’t fall within the boundaries of the elementary school whose field backs up to my parents’s backyard fence. That way, I reasoned, when my folks retire, the children can walk to their house after school and have a wonderful time until we pick them up after work. 

But here we are, with a third-grader and first-grader…and these people are still working. So we pick them up from the bus. It’s fine, because we work from home and the bus stop is right on our corner. So much for plans. 

Another thing about this house? In order to jam as many single-family homes into what used to be a farm, they decided no one was going to get a yard—just communal green spaces over which the crotchety broad who lives next door will threaten to call the cops because 5yearolds have dared to laugh and have fun within 500 feet of her window. But that’s a story for another day. 

It sure does make me miss Sid and Bertha (RIP), our neighbors who put up this passive-aggressive fence because we weren’t timely enough with our leaf raking. 

#NaBloPoMo

“Desperado” The Eagles

it's a beautiful, messy, unfair world, after all

Tonight I put two little boys to bed.

I rubbed their backs, I stroked their hair, I watched their eyes flutter open, I reassured them I was not leaving when they complained. And when they were all the way out, I backed away slowly and closed the door behind me.

One of those boys is my two-year-old son, whom I carried for nine months and watched being lifted out of my own belly via the reflection in the chrome of the overhead lights in the operating room. The other is my 37-year-old brother, whom I prayed so hard for every single night in the months before I turned four because I was lonely and wanted a baby to play with but not one who would want to share my dolls.

***

So much has happened in two weeks. Two weeks? Has it been three? Has it been 47? What is time anyway? I feel like I've lived two years of events in the last three months. Normally I'd spend a lot of time trying to find words to describe how I feel about Covid19 coronavirus (hella terrifying), quarantine (confusion and struggle), #BLM (it's about damn time), murder hornets (only THIS much less terrifying than Covid), looting (opportunists coopting a movement) and 45's government (I'll never find words for that one). There aren't enough stolen wee hours of the morning for me to write coherently about what has happened, so I'm just going to start at the beginningish. It's almost 3am. Be kind.

***

The Thursday before Memorial Day, May 21, was already a bad day. It was the anniversary of the birth of the first baby who didn't live. She would have been seven this year. I had already been feeling emotional and lashing out at people for a few days because the 21st is just the date on the birth and death certificate; my water broke at the office on the 19th and I agonized over hearing her heartbeat every eight hours for two ungodly days of torture before actually delivering her into a world where her little lungs had no chance of providing a breath. And the ordeal lasted for months afterward. It's like my soul activates some sort of emotional muscle memory of that experience around this time, and this year was exacerbated by the anxiety and hopelessness of the pandemic. My mother brought over a card and a gorgeous cream-colored orchid plant. My brother showed me that he had a reminder on his phone of her birth date and mentioned he had a headache.

My brother wanted us to come over on Saturday and grill out with him. I was not loving the idea, what with the death sentence that coronavirus would be for him and lifelong agony it would be for me if we were the reason he'd gotten it. It rained. My brother somehow manages to get his way, so he fired up the grill on Sunday and we made our way over there. He was on the deck with my mom, all masked up and distanced. My dad wasn't feeling social so he was kind of off on his own in the corner. H, the kids and I were all down on the lawn, running around--them playing with a slew of new toys their Nani couldn't help but buy and us in chase, trying to get them to take some ever-loving bites of their hot dogs. Ro actually loved the steak her uncle prepared, so she ate the heartiest meal she'd had in a week. The only time my brother wasn't grumpy was when he was shooting water at the children and making them scream in fake terror and run for cover. I kept telling H that it seemed like my brother was mad at me. Then I saw his hands trembling when he was putting the corn on the cob onto his fancy grill. That was odd. Apparently that headache--a dull pain that he'd never really had before--hadn't really subsided and he was taking Aleve every day to unsuccessfully make it go away.

The next day was the actual Memorial Day. It was the day we all, including my folks and brother, were supposed to have been getting on a plane to Orlando to visit what we'd been telling the children was "The Beach" (Hint: It's Disney World). My brother had planned every single teeny detail as only a Manager of Project Managers like himself is capable of doing. I was mostly interested in finding out what is so special about the Dole Whip and whether we'd survive the rigorous timetable. Sticking to a schedule with two children under six is a nightmare and I'm not going to lie: the 8:30am breakfast with Belle was a joke--we can't even get them out of bed by 8:30am and Orlando is an hour ahead! Ro was going to have the first haircut of her life there. You read that correctly; her hair comes down past her little behind, just like Rapunzel. Not a single one of the seven of us has ever been to this magical place where everyone is supposedly always happy. But it's closed, along with nearly every other place there is these days.

My brother decided to see his primary care physician in a video visit on Tuesday. He kept calling while I was on conference calls. During the quarantine, this kid has taken to calling me on average of six times a day. I get it: He is lonely and bored and a little bit miserable. I can't always answer, but have always had this nagging feeling when I send him to voicemail that it's going to be a bad call that I've ignored. Most of the time he just wants to shoot the shit between his own meetings or when he's tired of tv or when he wants to see the children. But this time the follow up text was "I'm going to the Emergency Room."

What he thought was a tension headache was actually a brain bleed.

After that initial cat scan, they admitted him directly into the ICU. No visitors. No information. My parents were losing it, I was freaking out and he was in there, all alone.

***

One thing I may have not made clear about my brother is that he is a charmer. I cannot tell you how many people met him once and have remembered him forever. He has been working this voodoo on our parents and me since he entered this world, and somehow generally gets his way. I'd say a lot of that is because it really doesn't hurt us to make whatever he wants happen, and the precariousness of his health condition is kind of always hanging around like a lingering cough: This could be the last…do you really want that to be the last…? So while he was dealt a really shitty hand at birth, we have tried to make the rest of the stuff that is in our control a little less shitty. And perhaps he might take some of that for granted, because he doesn't know any different. That said, he works very hard and has made a name for himself. He's actually a bunch of people's boss. It's strange, because to me he's still a three-year-old running around in Smurf undies.

He knows someone who knows someone who knows the CMO of the hospital where he is admitted. They gave him permission to have ONE person be able to come and visit. And two days into his stay, the CMO came to his room to greet him and tell him so, personally. That very special allowed visitor is me. I feel incredibly guilty, because no other patients get visitors, but not guilty enough to stay home and leave him to suffer alone.

***

The ICU room is new. There's a giant flexible, shiny silver tubing coming in then out the back that is LOUD. AS. HELL. It creates negative pressure to continually suck out all the air in the room, thereby also sucking out any airborne germs. This is handy in the time of Covid19, and I'm sure by design. But the sound measures 65 decibels. And there is no break. You can't even hear yourself think in there, let alone dream about listening to a podcast.

The first couple days my brother was in ICU. Then they moved him to a sweet new room with lovely windowseat with a view of the nearly empty parking lot and two (!) televisions in it. During those idyllic days, I'd bring him a different meal each evening and rub his head while he watched reruns of "Chicago P.D." or "30 for 30" on ESPN (that Lance Armstrong was something). He could walk and talk and generally function fine, but the headache wasn't going away. They kept doing CT scans to check on the bleed. I managed to be there one day when the neurosurgeon was there, and they explained that in a normal patient, they'd take them to the operating room and "evacuate" the blood and fluids immediately to relieve pressure on the brain, but because my brother has a whole lot of extra stuff going on already, that would be risky. Mr. I Do What I Want had his three-chambered heart set on surgery.

Things have not been easy for this guy, as I have described in many a post here. But he has always been battling through it and coming out on the other side. This time is different. We are hearing a defeatist tone in his voice and exasperation and exhaustion like we'd never heard before. His best friend is expecting a baby and didn't reach out as much during this quarantine, which really hurt. I try my best to be there for him, but children need to be bathed, work hours need to be completed to pay the mortgage and I do need to sleep once in awhile. That unavailability hurts, too. Both of us. He really hasn't even gotten over breaking up with the longtime girlfriend, m, and kicks himself every day for having left her seven years ago. I don't feel right commenting on that relationship, but something needs to happen to give him the closure he needs because it seems like he just can't give anyone else a chance. He kept saying, "I'm tired. I am so tired of fighting. What is the point?" I would gently start listing the names of people who were reaching out with concern, love prayers and support. I don't think that did anything but annoy him, but he put up with it.

I had really been hoping the inflammation and old blood would magically go away without surgery (I read it can be reabsorbed by the body, but that wasn't going to happen in less than a week). They were set to operate on the morning of June 2, this past Tuesday. The delay was to accomodate several days of administering platelets and medication to encourage his blood to coagulate. Those would combat decades of blood thinner use he needed to keep his heart working without blood clots.

In those days before the procedure, he called EVERYBODY. Longtime buddies, out-of-touch friends and all his exes. Even m. He shared seven years of pent-up feelings with her and she was rightfully taken caught off guard. They are not getting back together. I don't think he got the closure he wanted. Whether he got the closure he needs is yet to be seen. Either way, she's been texting me for updates every day, along with his legion of fans.

The night before the surgery, several of his coworkers, his boss, my folks, my godparents and friends met up in the parking lot of the hospitals with signs and a Zoom meeting (where more work people joined) in a little rally. It was one of the sweetest things I have ever seen. My dad, who doesn't have the patience to sit through a feature-length film, drew a person holding a giant heart that said "You are special" and underneath was "Love Mom and Dad" and colored it all in--with thin-tipped markers. That must've taken forever. My mom made one with sports on it and something like "Get better very soon." We made a giant sign of taped-together easel paper that says "We [heart] you" in giant letters. Ro is obsessed with half purple/half pink hearts and is very proud of having mastered the shape. His nurse has taped those signs to his walls.

On the day of surgery, I was allowed to be there for the prep but told in no uncertain terms to GTFO as soon as he left for the operating room. He was irritated that he wouldn't be put all the way under but given "Twilight" sedation for the procedure. He was fiercely advocating for himself, and it made me very proud. They didn't know if he could survive general anesthesia. Which was ok, because apparently with brain stuff, most of the time the patient is kind of awake. His anesthesiologist turned out to have been in the same high-school graduating class, and they were catching up on classmates while she started his arterial monitoring line. Then they made me pack a bag with anything he might need for several days, take the rest of his stuff, and they wheeled him away. Six hours later, after the procedure, getting off the ventilator, the recovery room and the initial CT scan, I was let back in to see my baby brother with a drain sticking out of his head.

***

Pain is something you can build a callus to try and bear. This guy has had eleven open-heart surgeries, so this process is not unknown to him. But messing with the brain is messing with his head. He says the pain is so intense that only morphine makes him feel "a little better, but not a lot." They decided not to bore into his skull because they can get just as effective results from a subdural (under the skin) drain placement as making holes. But the surgeon told me that normally when he cuts into a patient's head, he'd see white from the bone. With my brother it was all red, no white. And because he has been taking Coumadin for almost all of his life, his blood doesn't want to clot and stop bleeding.

The evening after the surgery, I felt like I couldn't get any answers. They couldn't find his bag, with his phone or chargers in it, and I would be damned if I left before I secured a means to be in contact with him. It was finally located, somewhere, after they'd tried to tell me I had walked off with it that morning. I kept asking questions and the three nurses assigned to him kept putting me off, saying I had better talk to the neuro team. My brother was very very out of it; he wasn't going to be a reliable narrator, and worse, he kept asking me if he was going to die, and saying he didn't want to die. That broke my heart but gave me hope that he does have the mental strength to fight. At home, my parents were going out of their minds with worry. I finally cornered his lovely night nurse outside the room and was trying to make sure she had my phone number when he started yelling at me from inside the room. He didn't want me talking to his caregivers out of earshot. He wasn't giving me answers and they weren't giving me answers, and I had an entire crew of concerned people asking me questions. I promised not to talk to anyone without him as long as he GAVE ME INFORMATION. The next day, he called me and put the neuro surgeon on the phone while they were there doing rounds.

During the operation, they were able to remove a lot of blood. The surgeon said it came "pouring out like motor oil." There was new bleeding as a result of the procedure, which is what they feared when they had recommended against surgery. Instead of one spot, where the original spontaneous bleed had been, it was bleeding at the top, bottom, left and right of his brain. There was output coming from the drain, but the CTs they did 3, 6 and 9 hours after showed he was stable. They were pumping him full of coagulating medications, which "are very potent" and also not good for his heart. He also isn't making many platelets, so they've continued to give him those as well. At this moment they have to choose between the brain and the heart and they are focusing on the brain, even though the hematology team and cardiology team are watching him closely, as well. Encouraging the blood in his head to clot could also lead to bad clots that could get to his heart. This is all very disheartening. And unfair. The neuro said he's doing very well thus far and it'll be 72 hours of hell but then they expect things to get better. They do not anticipate any issues, but they will be ready if any arise.

***

I'm writing this about 65 hours post-op. It's 4am. On the day of the surgery he was in a lot of pain but still managed to make a "that's what she said" joke to a nurse putting in a particularly difficult IV. Yesterday they let him have more than a wet swab in the mouth, then ice chips. Being able to eat gave me hope that they didn't think they'd need to do emergency surgery on him at any moment. I brought him Gatorade, Sour Cream & Onion Pringles and ginger ale. He had red Jell-O. Today he got another stable CT, so they let him sit up at a 45-degree angle, walk around the unit with his nurse and use the bathroom. But he called me several times in misery, saying his entire body hurt from lying in these crappy beds for more than a week (he's starting to get not-open sores from the bed) and that he felt like an 18-wheeler had run over him, backed up and run over him again. He requested a Dairy Queen Heath Bar Blizzard, which was the only thing he ate today. If he can have a couple more stable CTs, they might talk about removing the drain. There has been no new output since yesterday.

When I was there tonight, rubbing his forehead and the pinching the bridge of his nose as I have been doing for 3-5 hours every day they let me in to try and get him relaxed enough to sleep, I noticed one of his eyes was suddenly kind of bloodshot, and there was swelling on the left side of his face. I told the nurse, who paged the neuro team, and they did a stat CT. As they were pushing him out the door, he tells a nurse, "DO NOT LET HER LEAVE." I don't have a good way of finding out what the radiologist said, and no way to know how he's doing tonight. That sucks.

Each day gets harder and harder to leave him. Yesterday at 9pm, I was trying to explain that I still needed to go to the grocery store and he was begging me to stay. I'm starting to see why my mother would spend weeks and sometimes months in the recliner at his side, only leaving to use the bathroom or a quick shower in the nurse's locker room. When I told her I won't drink anything after noon to try and prevent having to use the bathroom at the hospital, she said that's what she did during those times after his surgeries. He would ask her, "do you really have to go to the bathroom?" And I can picture exactly how hard that must've been for her. What I can't imagine is what it's like for her now, when she's stuck at home and can't be there. I've explained that I'm representing all of us, and when my hand is on his forehead, it's all of our hands on him, trying to make him feel the love we and the dozens of people on multiple continents who are praying for his recovery are sending. It's cheesy, but it's what's getting me through it. That and repeating all the prayers I can remember from CCD.

***

The thing that I just can't shake about this, and life in general, is just how damn unfair it is. This guy was born with his heart on the wrong side, missing a left ventricle. He has one lung, liver cirrhosis, a spontaneously spewing left leg and now a brain that might randomly bleed. The news that this ordeal could very easily happen again next week, next month, next year is probably eating away at his hope for a "normal" life. That said, he IS alive, and his brain is capable of still coming up with smartass answers to my questions even after the trauma of surgery. The same can't be said of so many other people who didn't have a chance.

H is constantly reminding me that life isn't fair. That I have a warped sense of justice, as if it's actually possible, when it just isn't a lot of the time. Deep in my heart I know this, yet every day it continues to poke me, aggravate, make me irate.

Today people at our company took a knee for eight minutes and forty-six seconds in memory of Floyd George, who was murdered by law enforcement in Minneapolis. Cities have been on fire in the last week. Looting, rioting, marching, protesting. To try and start to fix hundreds of years of injustice, somehow. People's anger had nowhere to go. At least anger can lead to some kind of action, and possibly a resolution. To me it is infinitely preferable to despair.

***

Kash just woke up, ran to our room and found I wasn't there. When he woke up his father, he said, "Mommy went to the hospital." I went up there, gave him some water, walked around holding him and sang the full roster of baby songs all the way from "She'll Be Comin' 'Round the Mountain" to "Hush Little Baby" until he relaxed enough to fall back asleep. I was able to comfort him, stroke his hair and rub his back. Six miles away my brother is suffering alone, with only the bloops of the monitors and the hum of the negative pressure fan to lull him to sleep. I hope he's dreaming of seeing Disney World.

hotdog bun

So they've been monitoring me very closely. This time. Finally.

And thank God for that, because last Thursday I went in for my every-other-week (why does "bimonthly" have two meanings?) ultrasound to check cervical length. Basically, a long and closed cervix points up toward your baby. It keeps your kid and the bag your kid is in on the inside of you. If it starts to shorten or open up, the bag can get pushed out and even pop. Last year they never did figure out what happened; my cervix looked closed after that baby's amniotic sac burst. And then the second child came and went. Plus, I'm of "advanced maternal age" now. Thus, the monitoring.

The last few appointments have gone great. I almost felt silly hopping on the table for two minutes, the technologist taking measurements and then some quick peeks at the baby, then the doctor saying everything looked great. I was assuming the same routine for this last check, but as soon as my insides showed up on the monitor, I knew something was wrong.

Normally, my cervix kind of looks like a closed hotdog bun with no hotdog. But this time, it seemed as though some curious little person wanted to see what was inside the hotdog bun and started prying it apart. And that curious little person was now vigorously sticking its little feet and legs into that opening, using it as a springboard to launch itself around.

The tech was tightlipped when I asked if that was normal (knowing it isn't) and she said I could discuss it with the doctor in a few minutes.

The doctor said that my cervix hotdog bun was "funneling," and that kids--she called mine "the little dickens," which I love--have a tendency to stick their arms and legs where they don't belong. And oh, if I hadn't eaten a huge, dairy-laden lunch, do I think I can go straight to the Operating Room?

So Jon and I went upstairs to the OR, they gave me a spinal sedation, they flipped me nearly upside down and my physician did a surgery to put a stitch in the cervix, in the part that was still closed so that it will stay that way. Hopefully. The whole thing took less than an hour.

The entire time, the anesthesiologist and I were having a very detailed discussion about great dining in the city of Chicago (He wants but hasn't been able to get into Schwa, but enjoys the housemade sausage at Table, Donkey and Stick. I sang the praises of The Bristol). The nurses call him Dr. Justin Timberlake, and I can see the resemblance. I kept looking at my doctor squintily (no glasses), and for all the OR gear, all I could see were her eyes behind a shield. She has some of the most beautiful eyelashes I have ever seen, and doesn't look to be using mascara at all. Then it was over. Doctor said she could see the baby bouncing around in there. I wasn't going to be able to feel anything from the waist down for a while, so they kept me overnight for observation. I didn't sleep, and for all my whimpering and the aggressive air conditioner, neither did Jon.

The last week has been pretty much bed and couch rest; they wouldn't let me even go downstairs. The pain is pretty much gone now, but they did have me on some anti-contraction meds the first few days--apparently when they monkey with your business down there, your body may go into labor. That which they were trying to prevent (cervix opening, baby-bag bursting, contractions, labor, delivery) is possibly what happened with the first baby.

Today I went in for a checkup and everything looks good, if you think a hotdog bun that is flopping open on one side and pinched shut on the other looks good. We saw a little booty wiggling around in there, and the doctor said I don't have to be on bed rest, but I can't really do anything, either.

Jon keeps telling me, and I keep telling my parents, this procedure is a GOOD THING. They did this to keep bad things from happening. But I will be honest, I am scared as hell. I don't want to think about a nursery color theme, I don't want to pick out a crib, I don't really want to think of names--at least until we make it to 24 weeks, when I know he or she has a shot to survive outside of me. I really don't want to think about the alternative.

reversal

I have been working in a hospital on and off for more than a third of my life. I'm used to the noises and the fluorescent lighting and the terse whispering and the weary-looking eyes of nearly everyone there. And unfortunately I have spent way too many hours in hospital waiting rooms. But when I found myself sitting on a cart in Emergency Department Pod A trying to wrap my mind around the fact that my water broke 23 weeks too early, I went sort of numb--and all I could think about was my brother.

Is this what it felt like for him all those endless mornings at 4 a.m. when he was getting prepped for surgery? When everyone was bending over backwards to make him smile or be comfortable and nothing really worked but he pretended that it did work just to make them feel like they were helping? Did it hurt him this much every time a nurse went digging around for an IV? Did his muscles cramp up like this? Was it just as annoying to have to drag a beeping pole to the bathroom while holding the back of a gown closed? How did he lie like this for WEEKS at a time? I was only there for three days. Oh my God it must have been so much worse for him. HOW did he endure this? How did he not complain more? How did he get through this over and over, so many times? I just wanted to see his face.

But I couldn't call him. He was in St. Louis, probably sitting at his desk toggling between work and ESPN. He was looking forward to holding his niece or nephew someday. Making plans to indoctrinate the child to root for Chicago teams despite the kid having 50% Los Angeles DNA. I kept picturing his expression on the FaceTime when I told him I was pregnant (he was the first person I wanted to tell)--usually so stingy with his smiles, he was absolutely beaming. It had been a tough time and it was nice to give him something to be happy about. A few days later, I got a text picture of him holding a friend's newborn and he looked so happy. I could just picture what a tremendous uncle he will be. For years I have said my children will call him the Hindi name for Mother's Brother: "Mama," and he has threatened all kinds of bodily harm if I made good on that promise. But as soon as he heard there was going to be a Baby, I was certain he would love my kid more than anything in the world--even if she called him "dookieface." This news was absolutely going to break his heart. If I could delay that in any way, I was going to.

A few hours into my stay, Jon and I were trying to decide how to tell the doctors we weren't going to listen to their stern recommendations. I decided it was time to call my brother. I gathered my composure and picked up my phone.

"Shut up, I'm already on the road."

I don't allow myself to think about what was going through my husband's mind on the 40-min drive to the Emergency Room, and I don't want to know what that five-hour drive was like for my brother. Jon has since said that anytime he sees someone frantically overtaking people on the road, he imagines them worried and rushing to a loved one, so he just gets out of the way.

Jon never left my side for more than a few minutes throughout the entire ordeal. My mom and dad were on the other side of my hospital bed. And then my brother burst into the room. Things did not magically get better. We were still helpless and losing our child. But when I looked around and saw that my team was complete, I finally let out a breath.

Many times I have tried to explain how I feel about my brother. Maybe everyone thinks of their siblings this way, I don't know, but making sure he's ok has simply always been a life requirement. I remember tiptoeing into his room at 3 a.m. to see that he was still breathing when I was 10. He came to visit me in Champaign after he got his drivers license, and on the way home his car broke down on an unlit stretch of Interstate 57 at Sauk Trail; the sheriff lit some flares and just left him there. My then-boyfriend couldn't understand why I was pacing around in tears thinking about my brother, scared and alone, waiting for hours after the flares went out for my parents to get there. And I cried just as much as our mother did at his college graduation.

I feel like an overbearing just-as-bad-as-mom who lectures and worries and causes the biggest eyerolls imaginable. Most of the time, I probably am. However, my brother dropped everything, threw together a bag, jumped into his car and drove 282 miles just to be in the same room as me and all he said was, "How could I NOT be here? You are my sister."

People say that you don't know what it's truly like to care about another person's wellbeing until you have a child. Having had one--albeit very briefly--I agree. But I think I already had a pretty good idea.

Happy Birthday, brother.

we held our perfect child, long enough to say goodbye

The cruelest detail was that I didn't actually hear that strong, healthy heartbeat until after they told us there was nothing they could do to save our baby.

***

Last Saturday, I had severe low-back pain. I thought I might have hurt myself, even though I hadn't been lifting or straining. Sunday night I felt weird, crampy twinges, some so severe I had to kneel down on the floor. I've never been pregnant before, and have long been regarded as a weakling when it comes to pain, so I figured it was gas and told myself not to overdramatize. It wasn't at regular intervals, but it kept me awake. Granted, I hadn't been able to sleep until the sun came up for the previous few weeks anyway. Plus, I'd had an (informal, I have technologist friends) ultrasound just three days before that looked fantastic. While the techs didn't feel confident about the sex of the baby just yet, they assured me our child was healthy--and showed me four strong beating chambers on the screen. In fact, I even saw Baby drinking amniotic fluid and moving around like a champ.

***

Monday morning I went to the office at 7. Any other day I would have been inhaling Cheerios at that hour. My mom recommended I call the doctor, but I got the answering service. I planned to call right when they opened at 8 a.m. Unfortunately, I had staggering--apparently they were contractions--pain and my water broke at 7:50. Just like the movies; a weird pop and a torrent of warm fluid. I can't get that horrible sensation out of my memory. And even though I'm pretty angry at God right now, I am so thankful this didn't happen while I was alone, especially while driving.

A coworker friend drove me to the Emergency Department and I called Jon to say he needed to leave work immediately and be with me in the ER. He didn't buy my fake-cool voice. I can only imagine the terrors going through his mind during that 40-minute drive.

The doctor did a check and said the outlook was extremely grim. Essentially, at 17 weeks our baby's lungs weren't developed enough to sustain him/her outside the womb. And on the inside, the child needed plenty of amniotic fluid to breathe, protect him/her as well as to continue lung development. Sadly, there was probably only a teaspoon or two of amniotic fluid left. And they didn't think it would last. If our baby would have been at least 24 weeks, he/she would have had a much better chance of making it on the outside.

***

For whatever reason, at the 14-week doctor's-office ultrasound, I couldn't distinctly hear the heartbeat. Jon and the doctor did, as well as my mom and dad with my brother's special stethoscope, but I just never felt confident I'd heard it and that made me sad. However, when they took me from the ER to Labor and Delivery and checked for fetal heart tones, it couldn't have been clearer: 165-170 bpm. A healthy rate for a 17-week baby in utero. That was devastating.

***

All the medical professionals were strongly encouraging Jon and I to consent to induce labor and deliver the baby. They worried I'd get an infection that could threaten my life or ability to have more children. While they never say "zero" or "one hundred percent," Baby's chances to make it were as close to zero as they could estimate. Hearing that right after such a strong heartbeat was excruciating. I was lost, but Jon was unwavering; we were absolutely not going to give up on a kid that wasn't giving up on us. They respected our decision but said they'd move ahead if I showed any signs of infection.

This continued for two days. They kept checking the heartbeat, which continued strong and thus became increasingly unbearable to hear. The baby apparently found a tiny pocket of fluid on my right side and was hanging in there, fighting it out. I was trying my best not to move and lose another drop of fluid for my kid. Everyone that came in the room already had that horrible, pitying look in their eyes.

***

On Tuesday evening, contractions started again and we stopped checking for heart tones. I am so thankful the universe made that decision for us, because Jon and I could not have lived with ourselves if it happened any other way. Regardless, we weren't going to get the baby, and if the placenta didn't come along when I delivered, I'd have to have surgery to remove it. So I consented for an epidural.

At 1:50 a.m. Wednesday May 22, our beautiful baby was born. From the look of it, our child was fighting to breathe until the very second it came into the world. Everything was perfect, from each little finger and toe to the cute little nose--which Jon swears looks just like mine. The mouth is definitely Muller. He/she was curled up and looked peacefully asleep.

My mom, dad, brother and Madelyn were all there, and most of them held our baby. It was tough watching them looking down at the little one. At 7 inches and 4.25 ounces, he or she was measuring tall, which I have to say is a little surprising. Baby was about the size of the doctor's hand.

But the absolute worst was watching Jon. He'd developed a fever, was shaking with the chills and was pacing around like a maniac until the baby came. I've wanted to be a mother since my high school babysitting days, but Jon was born to be a father. My already broken heart was completely crushed when I heard that he was cradling our baby and singing to him or her.

 The smudge on the left is a handprint.

No one knows why or how this happened. Not yet, anyway.

Apparently this is called Pre-term Premature Rupture of Membranes (PPROM) and it occurs in 2 percent of all pregnancies. If we were further along, perhaps something could have been done to save our child. Perhaps not. The maternal fetal medicine doctor says the membrane sac is extremely strong--experiments have been done where they drop cannonballs on it and they just bounce off. But no one knows why some can weaken and break. In my case, it wasn't a small hole, it was a blowout--impossible to put back together, even if the science had been there.

We have been researching this and there is all sorts of speculation, such as Baby had some kind of virus or infection that didn't show by making me sick, or a signal from either one of our brains telling my body he or she was ready to come out, inducing labor. The doctors were very clear that even though they will be testing the baby (including chromosome, which will finally tell us the sex), there's a very good chance we will never know how it happened.

***

Baby was cremated at a local funeral home and we will be taking him or her to two special resting places (one here and one in California) as soon as we decide where those should be. My parents handled all of that business. I've always been grateful for the love we have from family and friends, but at times like these, that support is pretty much what is helping Jon and I get to the next day. We haven't wanted to see anyone, but knowing people care give us strength.

***

It's so hard to describe what we're feeling (here's a link to Jon's post about this). The second I felt that gush of fluid, something in my mind snapped and sort of turned off. I am terrified of what will happen when it turns on again. Jon says that there was nothing we could have done better or differently these last four months. When I show signs of cracking, he is adamant: Yes, I was working a lot, but he's not wrong when he says my coming home and leaving my coworkers there to continue would have caused me far more stress than just putting in the 70+ hours a week. I'm not sure other people in our lives are as convinced as my husband, including myself. But I will have to learn to live with that. I hope I am able.

I am so grateful that our little one no longer has to suffer. There are few things worse than holding your child and knowing he or she will never take another breath. I wouldn't wish that upon anyone.

whatever you do, don't puke on her shoes

"So I know we got the t-shirts with his face on them; what are you going to wear underneath?"

"Um, the usual, Mom. Maybe a long-sleeve t-shirt because it's going to be cold."

"No I mean pants. should I wear dress pants?"

"You know this party is in a bar, right? I'm going to wear jeans."

"What kind of shoes?"

"I'm wearing gym shoes, but you can wear sandals--I know your feet get hot sometimes."

"No way! I don't want to get vomit on my feet!"

"What?"

"That's what happens in bars! People drink too much and then they throw up on your shoes."

"Have you ever been to a bar, ma?"

"Of course I have! Remember that one time my friend's son was getting married and she dragged me to her daughter-in-law's Bachelorette party? That was in a bar!"

"Did someone puke on you?"

"No, but she threw up NEAR me. And it splashed!"

"Oh my God Mom, no one is going to throw up on you at my brother's birthday party."

"I probably used up all the paper towels in that bathroom cleaning my feet off--oh my goodness it smelled so bad, too!"

"MOM. I can almost guarantee that no one will throw up anywhere near you at his party. I promise if it looks like it might happen, I will stand in front of you and take the splash."

"Oh and the one who threw up was a grownup lady! You know she was like 50 years old? What disgusting behavior. This is why I don't approve of drinking."

"Nobody is going to make you drink, mother."

"And people weren't looking where they were walking, Cadiz, they were STEPPING in it! It was yuck."

"Ok, then you'd better wear your gym shoes, then."

"I don't care if my feet are hot. I have to protect myself."

hey, at least i've saved on sick days

Have you noticed that if you get the flu shot, instead of dripping and coughing and puking and feeling like utter garbage for three days but getting over it, you've got prolonged sniffling, clearing of throat and acheyness that drags out over weeks and weeks? As more people get the flu shot every year, I wonder if we'll have hordes of functioning-but-irritated people instead of a good smattering of really sick people who stay home a few days. I'm not sure which is better.

Take me, for instance. I work in a hospital and while I'm not actually administering direct patient care (unless you consider the healing powers of a cheerful smile in the face of serious grumpiness), there are a lot of germs floating around the halls. So I find the flu shot necessary. But I've been feeling generally blah for a few weeks: sniffly, sore-throaty and really really tired. So I take an allergy-fighting med so I can work undisturbed all day, then basically collapse at the end of the night. This is really wreaking havoc on my extra-curricular time. You know, the hours I need to catch up on Spanish/Hindi soap operas and make baby booties.

I guess this is just a rite of passage of winter. But I'm so ready for it to be over. And I could really do without the bloody nose first thing in the morning.

I am here with you, because I've been there

Last week, one of my cousins overseas had a baby. Apparently he was admitted into the ICU shortly after being born and we weren't getting any details. I cannot explain to you the terror my parents and I experienced those few days until we found out it was just an infection and that everything would be fine. The parents and the grandparents of this baby now have a minuscule glimpse at what that terror is. As much as they love us, that part of the family has never really been involved, so they have no idea what my parents went through all these years with literally no family around.

I pray they never have to find out.

***

This week, I had an 11-year-old patient whose paperwork said "status-post Fontan surgery." And suddenly the words became blurry. Fontan is not a word I see every day, and it took me by surprise, right back to those days of not knowing what was happening or what would happen, or if I'd ever get to see my brother again. I can't help but cry.

I don't have any idea how she found out, but my mom got wind of this patient and happened to bump into the kid's mother in the hall. Seventeen years ago, our family was in a similar situation. The other mother's first question? "Please tell me your son is 40!" After scolding the woman for thinking she was old enough to have a forty-year-old son, my mom told her all about my gem of a brother. Soon, they were both crying together. 

***

Yesterday, a friend from high school emailed me about a 19-month-old she knows who has been battling a heart condition since before even coming out into the world. And they have another (healthy) baby on the way. I am definitely sending love to her family, because I know it's not going to be easy, even though I really really hope that it will.

***

Basically, my heart breaks every time I think about how much my brother has suffered. And while it's such a miracle that he's 28, a college graduate who went away to school, has a real job that takes him all over the country and handles his business every single day--never once using his situation to make excuses, he will never be free from the medicine and the checkups and the memories. It's almost too much for me to even think about, let alone imagine. And I will never be free from my own set of memories. It kills me that there are other kids and other families out there that have to go through it too. All I can do is pray for them and hope that they will surround their kids with as much love as we have been lucky to have.

sometimes prayers trump privacy, mom

My mom has remained pretty tightlipped about this whole cancer thing, and she has asked me to keep the news to myself as well. I think it's mostly because she doesn't want anyone feeling sorry for her. I understand where she's coming from but I'm conflicted, because hello, one of my favorite things to do is spit out all my complaints onto this blog and then relish in the love and support from my readers. It must be a personality thing.

But the other day, not too long after she heard that they think the cancer was mostly cut out, I felt vindicated. Apparently one of the pathologists (disease-specialist doctors) ran into my mom in the cafeteria after her results came back. This pretty important dude told her that the reason it took slightly longer to get her results is that the laboratory technicians, doctors and analysts were giving the slides of what they cut out and sliced up an extra-thorough search. He said that every single person down there was keeping his or her fingers crossed and praying for my mom. Then this doctor stopped and gave her a big hug.

When she was retelling this story, she got tears in her eyes. To me, it's obvious: When you've worked somewhere for 32 years and have made a name for yourself as a sweetheart who always goes out of her way to help anyone from the janitor to the CEO, word gets around. Even though she might not have met all of these people, everybody knows her--for goodness' sake, on phone directories where numbers are listed by department, instead of the name of her area it just says her name.

I'm glad I opened my trap and told more people about what my mom is going through. Because we're not out of danger yet, and as helpless as I feel about this stuff, any tiny little good vibe that comes her way might just make all the difference.

we are so blessed

UPDATE: My mom is recovering well from last week's surgery to remove the offending cancer and has returned to full-time work (probably earlier than she should have). The results from the lab are promising; the doctors believe they got it all.

The five days of waiting for results were more agonizing than I can describe. The woman who normally has a limitless supply of smiles and good cheer was noticeably withdrawn and silent. It was as if some sad, blue shadow of my mom had taken over her body and could only muster the energy to humor us with a positive attitude once in awhile. It was heartbreaking, and there was nothing anyone could do to make it better. 

I just want to thank each and every single person who sent out a good vibe, prayer or hopeful thought our way. On days like this, love certainly can seem to work wonders. And, as with any medical condition, we must be vigilant and take things one day at time. But for now, things are looking pretty hopeful. 

no one appreciates the sun until it gets cloudy outside

Last Thursday, my mom had surgery to remove the cancerous bits they had found in her previous test. The doctors will send the sample to a lab, where they will put a dye on it and slice it up to look at under the microscope. If they don't believe they've got it all, they will have to go back in and try to get the rest. Any other decisions--about radiation or any other forms of action--will depend on these results, which won't be available for at least five days.

She didn't allow me to take the day off, but because of my new working hours (11:30 am to 8 pm), I was able to see her into surgery before my shift, take a break when they were wheeling her out to the car and get home in time to help my dad make sure she was resting comfortably. And she didn't allow me to take the next day off, either. Of course, during that alone time she managed to do a week's worth of laundry, clean the whole house and call around to the bakeries to see if they could make H's favorite pie for his birthday the next day (key limes are apparently out of season during Halloween). She also dug out her "Trick or Treat" embroidered longsleeved tee to wear when giving out candy. When left to her own devices, this woman will do anything but rest.

My brother is in agony because he couldn't swing coming home (as if she would have allowed it anyhow), and sent a gorgeous bouquet instead. My mom stuck with the party line "Why did you spend your money?!," but I could tell she was touched. I know that's not enough for the kid; we learned at an early age that being present is worth so much more than anything money buys--my mom was at my brother's side 24 hours a day for every single night he's spent in a hospital, often sleeping in a chair for weeks at a time. And boy did that make her feet swell. That's the kind of stuff we'd like to do for her, if only she'd let us.

I'm having a hard time seeing her like this. If you ask anyone who knows her, my mom is the sunniest, most warm person to be around. The doctors and the patients adore her. And hell, a handful of people she works with who are our age refer to her as "Mom." but in the days after the surgery, she's been a little down. I can tell her energy level has taken a hit, and she's actually been sleeping more than four hours a night. I explained to her that I learned (from a reliable source, the '80s animated show Muppet Babies* "Scooter's Uncommon Cold" episode) that when you're sick, you need lots and lots of rest so young Kermit, Piggy and the gang can fly around inside your body in a tiny spaceship and help your immune system fight off the bad guys. All I got was a chuckle and a wan smile. It's killing me that all our love and jokes aren't enough to make this cancer go away.

This futility-of-love-against-life-threatening-illness seems to be a running theme in my life.


*Dude, Muppet Babies had a ridiculous premise, but it was awesome. Am I right or what?

the big c

"Hey ma, you think I could leave my hair down for an entire double shift without it driving me bananas?"

"What's wrong with those clips? They keep the hair out of your face. And they make you look like a little girl. I like them."

"That's probably the reason why everyone is so flabbergasted when they find out I'm 31 years old, not 21, mommy. Not that I mind."

"Nobody can guess my age, either."

"I hope that means I've inherited the genes that keep you in shape, being able to work those insane hours and still look great. Not a lot of people's moms are as healthy as my mother."

"Your mother has cancer."






I debated ending this post right there, but realized it'd probably hit like a suckerpunch. And while that's not how I found out that my mom has breast cancer***, this evening was the first time the big c tiptoed into an everyday conversation and took it down. Which sure felt like a fist to the gut.

My mom's a tough lady. She tried to keep this from us for as long as possible, but when her doctor called the house while we were chilling on the couch watching Bidaai (I call it the "light girl/dark girl" Hindi soap opera), it was hard to keep to herself anymore. As much as I wanted to smack her for suffering by herself back then, I would have straight-up wrung her neck if she had fake-smiled through a Stereotactic MRI, biopsy and next week's lumpectomy without telling us kids. You know, so we wouldn't worry.

I've been trying to keep from falling apart--mainly by cramming as many hours onto my timesheet as possible. And training on two very different jobs in various areas is a pretty good distraction. It's easy to pretend this cancer thing is just a nightmare I had last month, and that the glue that holds my papier-mache world together is still just as impervious to cracks as ever. Especially if I can walk past her office a dozen times a day and hear her talking on the phone or laughing, normal as ever.

She works in the hospital, too. She understands that they caught her cancer early, that it's likely they can cut it out and it's possible that they can keep it from coming back. We all realize how TREMENDOUSLY LUCKY we are to have early detection in our corner with the water bottle. Not every person gets that kind of fighting chance. We are so so so very grateful. But this thing is scary as hell.

My brother is having panic attacks. For his entire life he has always been the one in jeopardy, the one people toss and turn worrying about. He has absolutely no coping skills to deal with feeling so powerless, terrified and being too far away for a hug. All I can offer him in the way of comfort is a welcome sign to our side of the fence.

For all of her usual "no-big-deal" nonsense, this has been one situation where I saw a hole in my mom's toughguy veneer (hell, the lady watched my kid brother yank out every last tube from his body in the middle of an ICU night, need four grown adults to hold him down, then be clinically dead for several minutes before coming back to us. And she kept her cool until it was all over). Now she is afraid, and that scares me half to death.

My new shared office is next-door to the office of the hospital's Breast Care Coordinator. I'm running all over the place all day, so that means I pass her pink-ribbon nameplate fourteen kajillion times each shift (twice that if I'm working a double). And every time I see it, I want to knock on the door and crack that Breast Care Coordinator's ribs with gratitude. Because she's been with my mom every single step of the way so far, holding her hand and making smalltalk throughout painful surgical procedures, explaining the situation to her in excruciating detail and giving her books to read (but not allow us to see, too frightening). Most of all, she's given my tough, strong-willed mother the opportunity to put down the armor and let it all out, which is something I don't have the power to ever offer her.

Up until today, I haven't let myself really feel the enormity of this disease. It truly is a different sort of snaggletoothed beast when it's going after the woman you love most on this earth. I came very close to losing it the day I saw the NFL players with their pink towels, cleats and helmet stickers, but something about how casually my mother said she has cancer with a sad smile just laid me out flat tonight. I'm so thankful I'm the only one awake so I can work my way through this box of Kleenex unabashedly. Tomorrow I'll have to get it together. I'll have to be able to walk around past office doors all day with a smile on my face, normal as ever.

Tomorrow I'll put on some of my mom's armor. She's going to need backup for the fight.






***Oh and by the way, she doesn't want me to advertise this news, so if you know her in real life, please pretend that you don't know. I realize this is easier asked than done. Thanks.

a colonoscopy is way more comfy than the symptoms of what it might detect

In all of my life, I have never actually seen someone die. However this afternoon, at about 1 p.m., I got hella close. A patient was gurgling and gasping for breath two feet in front of me. I cannot describe the exact color her face turned, but it was most definitely in the royal-blue family. All we could do was make her a little more comfortable and send for some licensed clinical help on the double. I won't go into details about the circumstances because of confidentiality, but I will share this: This patient wasn't much younger than my mom (read: too young for this kind of incident) but she hadn't seen a doctor in more than 35 years.

Take care of yourselves, folks. There are a lot of you out there (ahem, people who gave me my genetic material) who spout utter-crap statements like "nothing's going to happen to me" or "I'll just take this pill and lower my cholesterol" or "I've already lived my life" as excuses to avoid being inconvenienced for the sake of their health, and THOSE PEOPLE NEED TO BE FLOGGED. Seeing that woman today, barely hanging on through such misery, makes me shake my fist at all those who take their good health for granted until it's too late. 

BEING SERIOUSLY ILL IS AN AGONIZING EXPERIENCE. Would you like me to have my brother elaborate on the kind of time and pain it requires to recover from having your ribcage sawed through on multiple occasions with something with the horsepower of my dad's chainsaw? Why would you allow that to happen if you could avoid it? As much as I cherish cheeseburgers (and I love my cheeseburgers), even I can admit that at some point it's simply not worth it.

There are so many terrible things in this world you can't prevent; why not do something about the stuff you can? Your family will thank you.

the difference: you can give a toddler a time out

My mom's surgery last Tuesday went well; the doctor said it was rare to see flaps around a hole like that fall closed during surgery and that was a great sign. She was groggy for a few days, but diligently sat in her chair--for the first few days, anyway.

She has to sit where the purple scarf is (the seat is shaped like bicycle seat and only slightly comfier), knees on the blue pads and face in the white horseshoe-shaped pillow. The purple-and-pink thing is a hand mirror, and taped under the pillow is my high school locker mirror (they allow her to sort of see the television). She has another pillow apparatus to help her sleep face-down, too. That really sucks--she pretty much didn't sleep at all for five days.

The mirror that came with the chair is all scratched and warped. But they sent us a new one yesterday.

As much as I yell about staying in the chair, I can't imagine having to be face down for nearly 24 hours a day. Yesterday I sat on the floor with the laptop for four hours and my neck was killing me. The pain meds prescribed for my mom weren't so much for the eye, but for her aching back and sore neck. Poor woman.

But that was last week. As of Sunday, she still has to sit in the chair but can sleep on her side, so both of us are getting some much-needed rest. She's also feeling a lot better. However that means she is itching to move around and do stuff. I had been up late and overslept this morning, and in a few hours she managed to do laundry, make puri (Indian fried bread) from scratch, make sevayian (Indian sweet dish made with angelhair pasta), chop the veggies I got from the grocery store and scrape the stickers off our new front and storm doors and window. She swears she kept her head down the whole time.

About 45 minutes ago she left the chair to use the bathroom and I heard the sound of chopping spinach. I got my brother on the phone to give her a good scolding and she sat back down. Then I went to finish chopping the spinach and hadn't been in the kitchen two minutes before she was out in the driveway dragging in the empty garbage cans from the curb. All this is making me question my mothering capabilities; if I can't wrangle one grown woman, how the heck am I going to raise children?

I'm delighted that my mom is feeling better. Every four hours when she takes off the eye patch for drops, she can see a tiny bit more. She says it's more like a curtain opening from the top down. We see the doctor again on Thursday. Hopefully we can say goodbye to the chair very soon.

In the meantime, we've been flooded with so many good vibes, cards, flowers and presents that the living room looks like a gift shop. It's wonderful to see just how many people love my mom almost as much as we do. I won't attempt to post photos of all the flowers, but I had to include this, which is so huge I put my mom's iPod in the shot to show just how ginormous it is.

I'm thinking they miss her back at the office.

which is why i have an eye appointment this afternoon

Last night EB called to say her dad needs to have surgery next week to repair the hole in his heart. I attempted to reassure her by saying my brother has about four or five foreign objects tacked onto his ticker, including some GORE-TEX to make up for his lack of left ventricle, and he's as much of a smartass as ever. But I know there's little you can say to put someone at ease when a person they love is going to have his ribcage sawed open. I'm sending them good vibes.

Then my mother called. She's been having some eye issues for months (big black floaters, flashes of light, sometimes a sharp pain), but because someone told her she "really didn't need it," she opted out of eye insurance coverage for 2008 and couldn't see a doctor until January. Upon seeing her, the eye doctor freaked out, yelled at her and immediately sent her to a specialist.

The specialist did an eye angiogram (!) and referred her to another specialist. He was not happy she had waited, said that she has a "macular hole" in her right eye and should have surgery ASAP. She downplayed the severity of the situation and even told H she'd be angry with him if he told me what was going on. So while my mom was getting injected with dye, I spent the day beating myself up over a coverletter that somehow disqualified me for what would have been a perfect job instead of worrying about something way more important. I guess that's why she didn't want me to know.

This is just the latest in a long history of my mother being a great nurse but a horrid patient. She was supposed to have some other procedure for months, but has put it off for some ridiculous reason. Even though this is the perfect time: Unemployment means I can come home, drive her to appointments, pick up medicines--and most importantly--smack her around if she doesn't comply.

But it doesn't matter what I have to say. I think what got her in gear was the specialist telling her with certainty that this eye thing could render her completely blind. She ran home and made an appointment for the very next day. Because for as much as she likes to whine about not being alive to see her grandchildren, being alive but not being able to SEE her grandchildren may very well kill her on the spot.

my turn on the table

I had EXTREMELY MINOR mouth surgery this week. Something my doctor said she could probably do in the office, but didn't want to be stuck without cauterizing tools in case I was a bleeder. So she referred me to an Ear Nose and Throat specialist.

For some reason they had me come to the largest same-day surgical center in the Midwest to have this thing taken care of. I had no idea it would be such a big ordeal. Dude, this little bump? The one over here that is only sort of annoying in a completely-not-painful way? Did it really require all this stripping-down, open-in-the-back-gown, non-slip-padded-socks, hairnet, no-jewelry drama?

My mom took the morning off to go with me, even though they'd said I could drive myself. She probably felt it was only fair that she be there because she's always been at my brother's side, no matter how small the test or big the open-heart surgery. She even took pictures of me to show him how I looked in all the regalia. I rolled my eyes, but when I had to sit there for like two hours in the pre-op room, I was really thankful for the company.

They sat me in a recliner and gave me magazines and heated blankets. All these years when I've waited in pre-op with my brother before his procedures, I thought getting blankets out of a warmer must be so awesome. Yeah, not really. They stuck this locker-mirror-sized sticky pad with wires in it on my back—the wires hooked up to the "vitals" machine. That thing was really effing annoying because every time I shifted just a little bit, it pulled on my skin in a really awkward way. I just wanted that thing OFF.

When I finally got to the operating room, they strapped me to the table. They took my blood pressure about 14 times. And they stuck this really cold "grounding" pad onto my thigh in case the incision needed to be cauterized. I lay there, helpless, and watched the medical people walk around the room adjusting things, pulling out tools and talking about their Thanksgiving plans.

And then I felt the tears well up in the corners of my eyes.

All I could think about was how much my brother has had to endure. Here I was irritated they stuck a few things on me that I'd be able to remove in about 15 minutes. In his life, doctors have sawed through my brother's sternum and propped him open, sometimes for 15 HOURS at a time—on more than eight occasions. Every time I shifted and that sticky pad annoyed me, I remembered all those dressings he's had to keep stuck to his chest for months, itchy tape that gave him the hives. The countless shots, IV lines, soreness and never-ending regimen of medicines. Not being allowed a drink for days, just a wet swab, when his mouth felt like the desert. And yet, he hardly ever complains.

Lying on the table, looking into the masked faces and the bright lights before I got local anaesthesia and a whopping total of THREE stitches, it became even more clear that if our lots in life had been reversed, I never would have survived.

a mother's love is a double-edged sword

"Mmm, this kichidi is delicious, Mom."

"It's just a simple dish. And I made it even blander than usual so you could eat it today."

"I know, but for some reason, anything you make tastes so much better than when I make it. And nothing tastes better than your food when I'm not feeling well."

"I felt exactly the same way about your nani's cooking."

"Mommy...do you think you could make some Sheera, too?"

"Of course. Give me fifteen minutes."

"You know, if I ever get pregnant I'm going to make you absolutely miserable with my cravings for your cooking."

"That's fine with me. But what you don't realize is that I'm going to make you miserable by making sure you eat foods that you don't like."

"Ugh. As long as it's not bananas."

"Honeybunch, three to five servings of fruit a day. And bananas are at the top of the list."

bottle of hope

This weekend my mom volunteered at the annual event held at her hospital's cancer center. Basically it's an expo of sorts for people fighting cancer--a resource for goods and services that can make their suffering just a tiny bit more bearable.

My mom was decked out in a pretty scarf with pink "ribbons" on it, and the organizers were giving people tiny hot pink "hair extensions" so they could get into the spirit of the event. There were so many helpful gadgets and innovations showcased there that my mom was a little sad she'd never heard of some of them last year while a good friend of hers was battling breast cancer. (Her friend is in remission, by the way.)

My Favorite Mami's dad is battling cancer right now, and I had told my mom about it (I believe she has a direct line to the almighty, so I always ask her to put in a good word about especially important matters like that). My mome came home from the fair with a little something for him.

"This Bottle of Hope is a gift to you. It symbolizes a wish and a hope for health."

Basically, it's a small medicine bottle (I believe this one used to have Heparin in it) that would have been thrown away at a chemotherapy center. It's been covered in polymer clay and topped with a polymer-clay stopper. The project was started in 1999 by a Rhode Island cancer survivor. There aren't too many rules about the bottles, except that they're never to be sold. Giving and getting them is said to make people feel a little better, and that's always a nice thing when you're dealing with something as annoying as cancer. My mom picked out the "most manly looking one" for MFM's papi.

I'll take this moment to remind you all to get yourselves checked out regularly. SO much suffering can be avoided for you and all who love you if cancer can be detected early.

sure she can nag, but you really do want mom in on the 411

Awhile back, I wrote about my brother's sudden and scary issues with bursting veins.  As he's over the age of 18 and has decided to stay down in Alabama, doctors there don't consult with my mom about what's going on with his care like the ones here did all these years. I'm all for independence, but if your mom is a nurse who in the past has caught healthcare professionals in potential mistakes and alerted them to important factors that laypeople wouldn't know enough about to point out, I'd want that mom in the loop at all times. I'm just saying.

So we got a call on Thursday saying he'd be having surgery on his left leg veins on Friday. That's all the information we got: He was going in at 9 am, and he'd call when it was over. I guess it all happened really fast after the consultation, during which the doctor was like, That vein-popping thing with blood spewing all over the place? Yeah, I can fix that, no problem. So he signed up.

Of course my mother was sick with worry. She's been unfailingly at his side for every little test and procedure for nearly 26 years (with all of us often waiting on him, hand and foot). And even though a kind friend would be there with him and even take my brother to her home after he was discharged, going through surgery really isn't the same without your mom. So this was going to be hard. Especially on my mom. 

To make it worse, while my brother was home in May for his graduation party he had an appointment with a chiropractor about back pain he's had pretty much his whole life. They found that he has scoliosis (possibly aggravated from being sawed open and pinned that way for dozens of hours at a time). They also found some other situation with his left hip. My brother has never had good luck with that left leg; it's the one with the bursty vessels, and the one he has an especially hard time bending over—he can barely put on his left sock/shoe. (But God save you if you ever offer to help him.) We thought it was because they always enter the camera for cardiac catheterization into that big vessel where his leg meets his pelvis and the immobility was probably due to all the scar tissue, but apparently there was also something going on with the bone all this time. 

Initially they thought the head of his femur was too big for the socket, which is why he's had pain walking since he started walking (he says he's never really known any different), but then a CAT scan showed there's actually a tumor there; they weren't sure it was benign, and there was a chance he had bone cancer. Yeah, as if the kid needs any more issues. Those couple of days were kind of crazy. My mom was losing it, and didn't even tell us until she got more concrete information, so she was losing it practically by herself.

But again, because she is a nurse, my mother compartmentalized her breakdown to find out if results only came back like that because of his pre-existing condition. After the doctor took a look at his complete medical history, she concluded that it's probably not a malignant tumor after all, and that my brother should just be aware of any pain he feels in that hip when he's not moving it. If that starts, then we have to look at it again.

So that was in May. The surgery last Friday seemed to have gone well. My brother called while he was high as a kite on pain medication and said he told the nurses that he was a pimp, but that no one believed him. Someone called him out on it and he said, "You're right, I'm not a pimp. I don't believe in beating on women and treating them bad." When I asked if he hit on anyone who worked there this time, he said (in what he must have thought was a whisper) "No way! None of these nurses are very good-looking." And as usual, he had no recollection of this the next day. I guess what the surgeons did was tie off one of the leg vessels at the groin and laser some other ones. Hopefully that will stop the random bleeding. My brother has been in a lot of pain (none of the painkillers they gave him have been working; he's got a high tolerance by now) but is at work today. 

I've been calling/texting to check in on him all weekend, and it sounded like things were going all right, except for the pain. But this morning I got a call from my mom that he casually called, asking what he should take because his entire body has broken out in red, itchy hives, a lot like it did after last year's bad surgery recovery when he had a severe drug allergy. After that episode last year he got very sick and it took a very long time for him to get back to normal. Later, they thought he was allergic to the tape they used on his IVs and dressings. So this time they used paper tape, and the result is upsettingly similar. I just hope it doesn't get as bad. 

Of course, when I call to check on him he says everything is fine and that he's at the office. Stubborn kid. But I am happy to know that even though she worries, he's smart enough to tell my mom what's going on. She's been ready to get on a plane within the hour all week, but my brother has another proposition:

"Mom, what will you do if you come down here? You'll just be hanging out at my house while I'm at work. Why don't you do this: If the Cubs make it to the World Series, you can fly me back home for a game."