Hope for the Best, Prepare for the Worst: Cancer and What Came Next

M’s biopsy was scheduled for 8:45 a.m. on Thursday, July 12. We had to be there by 6:45. For two people who are 1) NOT morning people, and 2) NEVER on time, that we were there by 6:46 a.m. is notable, and will be making it on to the list of miracles I will be maintaining throughout this journey.

We listened to the radio on the way to the surgery center, which is in the same strip center complex as Dr. Hudnall’s office. This gave me a solid 30 minutes to once again try to block out the songs we heard, so I don’t ever have to associate them in the future with all this fuckery. Neither of us talked much.

The front desk nurses were chipper. The local news was on the TV. The waiting room had old people in it.

Michael was quiet. He seemed tired, folded into himself. Increasingly, that’s how he’s been. From the outside, he looks defeated. I know he’s not, though. He’s in pain. He’s exhausted. He’s frustrated. I don’t know if he’s scared. I haven’t asked. I’m afraid to ask, because what if he’s not, and that question makes him start to think he should be? What if he asks me if I’m scared, and then I have to be honest and tell him that my mind has already raced ahead to the question, what if I lose him?

M was called over to the front desk, around to the side, where they counseled him, had him fill out paperwork. He came back and handed me a clipboard that talked about advanced directives, listed me as his primary caregiver. It got me thinking about what we need to do, legal-wise. But I don’t want to think about that, either, because that feels like we’d actually be thinking over worst case, like, really worst case. And I can’t go there. Not yet. Not until we really know something, and maybe not even then.

After a while, they called M back to the surgery prep area, where they talked with him some more and then he came back out. Finally, they called him back for the actual surgical prep. They told me they’d come get me and bring me back once they had M all set.

More time passed. Good Morning America was on the TV, and they were well past their first hour of actual news and on to the info-tainment part of the broadcast. I guess the Back Street Boys were going to perform live on the following day’s broadcast. They’d been talking about it all show, hyping it like it would be the greatest reunion concert ever. In the back of my mind I tried to remember a single Back Street Boys song. I couldn’t. I wished they would change the channel to CNN or something, but I suppose that would be a downer, and no one who’s at a surgical center really needs to be watching downer television. I felt like HGTV would be a good choice. That’s what they show in the waiting room at Texas Med Clinic and at my dermatologist.

They called me back. M was in stall #1, or whatever they call the little areas with the beds in them, separated by curtains so you can’t see the other patients, but you can hear everything. I’m not sure if I laughed or smiled, but it was a little amusing, seeing M there with a little paper-like shower cap froufed out on his head. He had a plaid gown on, and grey socks with no slip rubber things on the soles in the shape of paws. The look on M’s face was priceless. He looked a little sheepish and self-conscious about his outfit. I told him I liked his hat, and he should keep it. I asked if we could keep the socks (we could). The space was cramped and awkward, and I had to scootch my chair around at a weird angle to sit and hold M’s hand.

I can’t write about all of this without mentioning our dogs, because they come up a lot between M and me. We have four dogs: two from my previous life, before M and I met, one from M’s previous life, and a fourth dog that literally just showed up at our door in early January (we tried  to find his owners–he’s a glorious, pure bred chocolate lab–but we never found them, so we kept the dog). My dogs, the Little Dogs, are both SPCA mutts, one seems to have some Jack Russell in him, the other is, we think, mostly Chihuahua with maybe some Rat Terrier. Their names are Sancho and Bella. M’s dog was a stray in the neighborhood, and M and his son took him in five or six years ago. He’s a 45 lbs. yellow lab and/or Golden Retriever mix, named Forrest (after Forrest Gump). The fourth dog is the chocolate lab that showed up at our door. I guess someone just dumped him in our neighborhood, which I don’t condone, but I could understand how someone would want to get rid of him. He’s a LOT. He’s still a puppy, but weighs 85 lbs. and there is no off switch with him. M’s son named him Hermes, but we call him Herpes or Big Dog most of the time. I tell you all of this, because we’ve created personalities for all of our dogs, and made up secret lives for them. Bella is a dirty, chain-smoking, old whore, who sits all day playing the slots and drinking White Russians and will do anything for a quarter. She’s not above putting a hit on someone, though she’s never actually done it. Forrest is the brains and the good looks behind the operation. He’s George Clooney in dog form. He’s also quirky. He loves Cyndi Lauper’s “Girls Just Wanna Have Fun”, and he rides around on his pink moped listening to it on his Walkman, wearing a pink helmet. He’s also a member of the motorcycle gang, the Banditos, so he knows some people. Sancho is the good guy, the loyal, innocent, never-wants-to-hurt-your-feelings guy. Forrest talks Sanchi (we call him Sanchi) into doing questionable things, just to sort of fuck with him. Forrest doesn’t mean any harm, he’s just kind of an asshole. Sanchi always goes along with it, against his better judgment. Lately, though, since Big Dog came into the picture, Sanchi has increasingly been coming into his own, a little more assertive. It’s mostly just because Big Dog irritates the shit out of everyone. And what about Big Dog? He’s the comic relief, the big, dumb doofus that the rest of the crew can’t seem to shake off, but secretly kind of like. M and I got into “Sons of Anarchy” a couple months back (I know, FINALLY) and binge-watched it ’til it was over. We decided Forrest was Jax, Bella was Gemma, Sancho was Juice and Big Dog was a prospect.

The dogs are our relief, they’re how we escape. The stories we make up about the dogs and tell each other are how we know we’re okay, no matter the situation.

M told me that Forrest was waiting outside the surgery center with the rest of the Banditos. They were there to bust M out. I told M I thought that was a bad idea, and that I’d go outside and talk to Forrest.

The anesthesiologist came over. He asked some questions. He explained that he would inject the anesthesia through a needle in M’s hand. He would put M all the way under, and he definitely would not wake up during the procedure (he really, really emphasized this). Afterwards, they’d bring M back up. Did we have any questions? No.

After the anesthesiologist left, M told me he was nervous. Once again, I didn’t know what to say. I just told him that I understood. I mean, shit, it’s surgery, they’re knocking your ass out. M would be crazy or else made of steel to not be nervous. I told him it would be fine, Forrest would be waiting for him.

Dr. Graham was the doctor who would be performing the biopsy. He came by to confirm what the procedure was (prostate biopsy, scope the bladder to see if there was anything to see). He said it should take about 15 minutes, and we would have the biospy results back by maybe Tuesday or Wednesday of next week. (Jesus, how much more waiting?!) For the rest of the day, take it easy, light meals, water.

Dr. Graham left and  a nurse came by. More questions. Yes, I’m the designated driver. M would need to take the antibiotic pill taped to his chart with dinner tonight. Did we have any questions. And then she kicked me out, back to the waiting room. M and I kissed  before I left.

More GMA in the waiting room. Insufferable. A very large lady who refused to take off her sunglasses or to talk quietly on her phone went to the vending machine and bought a bag of chips. I had brought a book of crosswords with me and was trying hard to solve one in spite of GMA and loud chip lady and all the thoughts bouncing around in my brain. Dr. G came out to speak with me. He brought me back into the surgery prep area, into a room with the word “Consultation” on the door. I felt like I was going to hyperventilate. This could not be good, right? I hadn’t seen anyone else in the waiting room get called back.

I sat down, Dr. G stood. He’s very tall and has glasses. He explained that in the course of scoping the bladder, they had found a thumb-sized mass toward the front of the prostate, between the bladder and prostate. He said he was able to insert a needle rectally that was just long enough to grab a sample of the tissue. He said he wasn’t really prepared to find that during the biopsy–it was sort of outside the scope of what they were there to do, is how I took it–but he felt like he got a good sample. He said he didn’t know if the mass was related to prostate cancer, or if it might be bladder cancer, or if it was something else altogether. He said we wouldn’t know until the biopsy results came back. In the meantime, though, he thought that mass was part of the cause of there being blood in M’s urine, that it was rubbing up against the urethra and causing irritation.

I went back to the waiting room. It’s never good to hear that something is growing inside you that is definitely not supposed to be there. But I was oddly relieved. At least we knew SOMETHING now. Yes, we had scans and blood panels and PSA scores and whatever that bone enzyme count was. But this was somehow different. It’s a mass. It can be seen. It can be poked. It’s causing irritation. It can be removed (maybe, I don’t know). After almost two weeks of knowing there’s definitely something bad going on, we hadn’t been able to SEE anything. Now there was something to see. I know that’s not rational thinking, but I’m just looking for something tangible, for an enemy that maybe we can start attacking.

A few minutes later, the nurse called me back to the recovery area. M was sitting up in a chair, back in his own clothes, with a small can of cranberry juice. He looked awake, but a little out of it, like he was really good and drunk. He asked the nurse, “Where’s my t-shirt?” All the nurses wear these navy blue t-shirts with “Urology” written in large, old-school curvy baseball jersey font, with “Associates San Antonio” written in smaller font inside the tail of the “Y” in urology. If a softball game spontaneously breaks out, these ladies are ready.

The nurse didn’t miss a beat, “We’re all out, they’re on order.”

“Bummer,” M said.

I really thought maybe you got a t-shirt after a procedure, they had me convinced. I asked M, “Wow, you get a t-shirt?”

“No. But the doctor touched me inappropriately, so I should get a t-shirt.” M’s humor is dry, and if you’re not careful, you’ll fall  into the trap of believing him when he’s just fucking around. It’s one of the things I love most about him.

They went through the list of things we needed to watch out for, explained that it was okay if there was blood in M’s pee, so long as it was thin and colored like cherry Kool-aid. If it was thick like ketchup or bright red, then we needed to call the doctor. Same if he had excessive blood in his stool, ran a fever of 101.5 or higher, or if he couldn’t pee. Then they got a wheelchair and wheeled M out.

As we drove, I told M that Forrest and the Banditos had planned a really dramatic rescue for M. They were going to blow up the door to the surgery center, but not, like, hurt anyone, and then there were going to bust M out. But I had told Forrest that that seemed a little extra and probably the cops would get involved and we just didn’t need the drama right now, so they’d left.

The rest of the day passed quietly, with M resting. I tried to nap, but my brain wouldn’t shut off. So I read the anti-cancer recipe book, wrote out a long shopping list, and went to Whole Foods. I spent the rest of the afternoon and evening cooking.

Around 10 p.m., M asked if I was almost done. I told him I wasn’t quite finished. He said he had asked, because he wanted to see if I would come back and sit with him while he took a bath. I instantly felt awful. I had spent the entire day just going and going, doing and doing. That’s what I do when I feel like things are spinning and out of my control. I control what I can control. It’s usually cleaning, but cooking seems to be the new thing, because what we put in M’s body is the only thing we can control right now, the only medicine we can administer right now.

I’d spent all day doing, neglecting my husband. I went back to the bathroom with him, where we just talked while he soaked in the tub.

 

 

 

This week. Wow. This week. I’m so tired. So mentally and emotionally beat up. And I’m not even the cancer patient. Jesus, what M must be going through, himself, that he hasn’t told me.

Let’s go back and start with Tuesday, July 10.

I stayed home that day. I tried to work from the kitchen table, but I really couldn’t. The appointment with Dr. Hudnall at 1:40 p.m. was just this elephant in the room, impossible to ignore, indeed, impossible to do anything but concentrate on.

Somewhere in between staring at the giant elephant in the room and getting ready to go to the doctor’s appointment, one of our little dogs, Bella, got into it with one of our big dogs, Hermes, and, predictably, Hermes won. There was a little bit of blood and it was momentarily scary, but, oddly (and only in retrospect, because neither dog was seriously injured), it was a necessary distraction.

It was a quiet drive to the doctor’s office, for the most part. We held hands. I made weak attempts at jokes. We listened to the radio, and I tried to forget every song that played. I don’t want to hear any of those songs later and be brought back to that moment of driving to the doctor to hear confirmation of a horrible fact we already knew.

We got to the doctor’s office, checked in, and once in the exam room, were seen immediately by a nurse who looks like she runs a lot of 5k’s. We gave her the CD’s of M’s bone, ultrasound and CT scans, as well as all our printed off copies of test reports. We told her M’s story going back to the day this all really got started, June 3. She seemed to appreciate our thoroughness, took M’s vitals, and then left.

Dr. Hudnall entered a short time later. Dr. H is a man probably somewhere in his 50’s. Tall, slender, dark grayish/white hair, glasses, a questioning sort of expression on his face, like he’s mentally always challenging something and years of doing so have left corresponding lines and wrinkles on his face. He’s also direct and to the point. He probably could have written this whole blog post in five words.

We told M’s story to Dr. H. Dr. H did the world’s fastest prostate exam, felt M’s nuts, and then pronounced to us that M has prostate cancer. “You’re smart people, you’ve undoubtedly already figured this out,” Dr. H said. Of course, the caveat is that this is all speculation until the prostate is biopsied, which Dr. H ordered for Thursday morning, July 12. He wanted to look at the bladder, too, just in case.

M is too young to have prostate cancer. And that it appears already to have spread means we’re dealing with something very aggressive. Dr. H said that he wants to take a “kitchen sink” approach to dealing with the cancer. The first thing we need to do is to stop feeding the cancer cells, and prostate cancer cells eat testosterone. So, starting Monday, July 16, no more testosterone. M will begin hormone therapy, and within 24 hours, he’ll be testosterone free (apparently whatever drug he’s going to be put on will generate a full on, male hormone dump incredibly quickly). The other drug Dr. H discussed with us is one I won’t get right if I try to guess the name, but it’s another hormone therapy drug specifically targeting prostate cancer. The drug, once testosterone production is shut off, inhibits the generation of cancer cells. It’s supposed to be effective without having as much in the way of negative side effects as chemo does. From there, we’ll figure out what other treatment is warranted.

I have to pause here and note that, as I’m writing this, the clock is about to carry us across the 12 a.m. threshold, into Saturday, July 14. So much emotion, so many conversations, so much other stuff has happened in the four or five days since Tuesday’s visit with Dr. H, that I’m having a hard time, even just these few short days later, putting myself back in the mindset and emotional state I found myself in in the moments during which that initial visit with Dr. H was taking place, and in the moments immediately afterwards.

So I’ll leave it with this: the biopsy got scheduled for Thursday morning, the absolute earliest they could get M in. Also, M has cancer. M took all this in stride, processed the news without a flinch, and then almost seemed to shrug as though to say, “Okay, let’s get on with it”. I watched him, thinking to myself, “How are you not a puddle, M? How???”  This man is a rock, I swear to you.

That is, until he isn’t.

M was on the phone as we drove away from Dr. H’s office, talking with the surgery center people where his biopsy was to be conducted. I was driving, and about to get on 410 East to head home. But M, still on the phone, gestured for me to get on IH-10 East, instead, which is definitely not the way home. A few seconds later he got off the call with the surgery center and told me, “I want to visit my grandma.”

M’s grandma passed away a little over ten years ago. She pretty much raised M, with help from his grandma’s oldest daughter, Jane, who is also M’s aunt and his mother’s oldest sister. M’s grandma was incredibly well-loved by the whole surviving family, especially, it seems, by her grandkids. She also sounds like she loved to drink, cuss, and have a good time, and like she was an unabashed character. I’m not gonna lie, for as much as I wish I could have had the chance to meet her, I’m just as glad I didn’t. I think she would have intimidated me tremendously at the very least, possibly cut me, worst case.

Anyway, M had talked about going to visit his grandma, taking me to her gravesite to meet her, but we had never done so. But on Tuesday, after the doctor’s appointment, we drove to San Fernando Cemetery on the west side to go see Adelina Ricondo. First, though, we had to stop at one of the many, many flower shops lining the streets that ring the cemetery. You can buy styrofoam crosses with words like “Abuela” or “Tio”, or fake flowers “planted” in old coffee cans wrapped in glued-on fabric. We bought coffee can filled with fake yellow flowers for five dollars. Next, we crossed the street to a no name, sketchy as fuck convenience store, where the man inside was merciful enough to let me use the restroom while M bought a twelve of Miller Lite (restroom break…try dealing with a urologist and urology issues and NOT feel like you have to pee all the time).

M directed me as I drove through the San Fernando entrance, back toward where his grandma is buried. I couldn’t help but notice along the way a car parked on the side of the cemetery road with the passenger side door open, and a woman sitting at a gravesite a few feet away, with some helium filled balloons, one of which said “Dad”. You could feel her pain. It was heart-wrenching. But not as heart-wrenching as what happened next.

When we got to M’s grandma’s gravesite, I pulled a little off the road. M grabbed two Miller Lites from the 12 we’d bought at the C-store. He also handed me a beer, then grabbed the yellow flowers and crawled out of the car.

I followed him the few steps to his grandma’s grave. There is no big marble or granite headstone marking the familial burial plot. There is only a bronze marker, flush with the ground, with Adelina’s name and the dates of her birth and death engraved on it. June 9, 1925 – March 13, 2008. M bent over and placed the flowers and a single can of Miller Lite on the marker.

And then he grasped his knees and sobbed.

He stayed like that for a long time, shuddering quietly as he cried. I stroked his back, while tears rolled down my own cheeks.

I have only seen M cry twice before, but never like this. I am jaded, pissed off at the world, cynical, and halfways dead inside most of the time. But it gutted me to watch M’s face contorted in pain and soaked in tears, wanting nothing more than to talk to the person who meant the world to him since birth, but he couldn’t, because she’s been gone for 10 years now.

M lowered himself slowly to his hands and knees, still crying freely, and began pulling away the weeds and grass that threatened to infringe on his grandma’s headstone. I tried to help, but I felt so small and useless.

When he was done, M and I sat on the ground and drank our beers with Adelina. It was sweaty and sunny and there were tiny ants biting us. I am truly horrible at being supportive and encouraging when faced with situations like these. It’s not that I don’t feel anything, because I do. But I tend to draw into myself when faced with such overwhelmingly shitty situations. I told M, “I don’t know what to do or say right now.”

M still had a few stray tears trickling down from under his sunglasses. He looked very thoughtful for a moment, and then he said, “I think what my grandma would do, is she’d let me cry, and then she would say, ‘Are you done crying now? Good. Because now you have to fight. I raised you to be a fighter.’ And then she’d probably make fun of how I cry.” He laughed. I laughed. We sipped our beer.

I asked him, “What’s your favorite story about your grandma?”

“Oh, there are so many,” he said. M has a smooth and gentle voice, it’s very soothing. He chuckled. “One of my favorites…I was 19 or 20 and living with her, and back then, for some reason, I always carried a gun with me, a little .44. My grandma didn’t like it. She always told me, ‘If you can’t do it with your own hands, then don’t do it.’ Anyway, she lived in this rental house, and she was moving out and needed her deposit money back to move into the next place. She cleaned the house, did everything she needed to do to get the deposit money back. But the landlord, of course, he was an asshole and he was like, ‘No, not giving you your deposit back,’ which just pissed her off.

“So I went to him separately, talked with him, got him to agree to give my grandma her deposit back. But before I could tell her he was going to give her the money, she got all dressed, and my uncle had this little air gun pistol–looked just like a .45–and she loaded that thing and had it all cocked and stuck it in her handbag. She was going to go down there with that gun and demand her money back.”

We laughed some more. We sat there a bit longer with the sun beating on us, sweat running down the sides of our faces and down our backs inside our shirts.

“Let’s go,” M said after a while. The drive home felt a bit freer and lighter, in spite of the tears that popped out of our eyes now and then. Thinking about it now, I really think Adelina was there, sitting with M and talking to him, laughing with us at the rent deposit story.

Dr. Scalzi called to check on M while we were driving. But of course she called, because she’s one of our angels. So is M’s grandma.

I’m counting on angels.

 

It is 10:39 p.m. on Wednesday evening, July 11, 2018, and I’m babysitting some Magic Mineral Broth, a recipe from Rebecca Katz’s “The Cancer-Fighting Kitchen”. The broth has been simmering now for over two hours, and, honestly, I’m sitting up with it for longer than the recipe says I need to, because I don’t want to go to bed. I know better, I know we have to be up exceptionally early to be at the doctor’s office by 6:45 a.m. to prep for M’s biopsy, which is scheduled for 8:45 a.m. I know that sitting here drinking red wine and telling these pages how I feel is going to make for a short night and a horrible morning. I know this. But the wine and the words are my comfort. Because I already know the biopsy will tell us nothing good, and might tell us something worse.

Yesterday was M’s appointment with the urologist, Dr. Hudnall. The upshot: M. has prostate cancer, even without a biopsy, that much is clear.

“Look, you’re smart people,” Dr. Hudnall began, and from there: It’s still speculation until the biopsy’s done, he said (I’m paraphrasing), but between the elevated PSA and the CT scan, it’s prostate cancer.

He asked if we had immediate questions, so I asked, “Has it spread to his bones?”

“Yes.”

Other snippets/highlights/lowlights/stuff:

1. Dr. H did a prostate exam on M right there in front of me, before I could ask if M would like privacy or not, it just–poof!–happened really fast. I guess the good news is that everything seemed to be happening so fast that there was no time for it to be weird or uncomfortable, and also, whatever walls might still exist between M and me are being torn down in short order.
2. M is too young to have prostate cancer. Dr. H pretty much looked bewildered the entire time he was with us, like, “What the FUCK are you even doing here? You shouldn’t be here”. But because we were there–because M was there at the tender age of 44–Dr. H told us that his assessment is that this is an aggressive form of prostate cancer.
3. Dr. H had no shame, no puritan sensibilities WHATSOEVER. He had M drop his pants for the impromptu prostate exam, and then keep them off, down around his ankles, for a testicle exam, and, while Dr. H was feeling up my husband’s jewels, Dr. H had me help out by observing the naked skin on M’s low back/upper butt and sharing whether I’d ever noticed how it looks mottled. I told Dr. H that no…the mottling didn’t look quite right, but these had been some crazy months, and M had been applying heat to his back on the regular. Good news! The mottling of skin color is consistent with M constantly applying heat to his back, so while we may be battling cancer on multiple fronts, at least it’s not in M’s butt skin.

My head is swimming. It’s the wine. It’s the lack of sleep. It’s the stress. I’m not an early riser in the mornings. Anything before 7 a.m. is barbaric. But more an more, I find myself wide eyed and restless by about 6:30 a.m. And today, I couldn’t even force myself to lie still and try to doze. I had to get up and go do something before I lost my fucking mind.

So I walked. I needed to think and not think and ask the Universe and Jesus and my dead grandparents and M’s dead grandma and all the saints and anyone else who happened to show up in my weird pantheon, just what the FUCK I’m supposed to do.

What do I say to M? Shit like, “Hey, babe, don’t you worry, it’s gonna be FINE”…well, that’s a lie and we ALL know it, so…what?

How do I act? I didn’t hug my husband until this morning. Is this cruel or insensitive or…what? The fact is that he’s in pain, sensitive to the touch. And he just got a cancer bomb diagnosis exploded into his face. For that matter, so did I. So do we hug it out? Did I miss an opportunity here? Am I a bad wife?

As I walked this morning, I thought about this and about 500 other things at a rapid pace. But mostly, I wanted to privately ugly cry while actively moving about. I know how weird that must sound, but sitting in a room, imprisoned by too many thoughts, and knowing I need to find a release…that is torture. To be able to step out the front door and MOVE. And ugly cry. That’s much better. I only stopped once in the midst of ugly crying to fake-tie my shoe while someone drove by. Ugly crying is terrifying for others to see, so, you know, no need to pull the neighbors into it.

 

For as stressful as this week and a day has been, there have been moments and events for which to be thankful. I figured I’d list a few of the ones that are top of mind.

1. The “I love you’s” have been more frequent and more sincere.
2. It’s tricky to touch M anywhere on his upper torso without it causing him pain, so touch has been limited mostly to limbs and stroking his back. Waking up in the middle of the night to find his hand on my shoulder as M slept was so sweet.
3. One of the little dogs, Bella, is afraid of feet. M loves to fuck with Bella, putting is foot right near her face when she’s not paying attention, and then watching her jump away when she realizes it’s there. It’s harmless, though maybe a little bit mean, but it makes M laugh. It’s nice when he laughs.
4. Everything else has become trivia, noise. It’s as though we have our own little world that only we inhabit, where the two of us are one, and no one and nothing else can enter.
5. The walls have come down. M and I have always been able to be pretty open, but in the weeks leading up to all of this, we’d both begun to feel a little like the other was pulling away. Nothing serious or threatening, just a patch we needed to get through. I’d felt a little like he was pushing me away, like I irritated him, and I didn’t know why and couldn’t get him to tell me what was happening. My response was to push away, myself, though not on purpose or in any way I knew how to control. But I could see myself doing it. Last week, as we sat in bed watching a movie (this is becoming a nightly thing, this movie watching), we talked about this. He told me that he had just known deep down that something wasn’t right with his body, and that it hadn’t been me at all. He told me that what he needs from me is to remind him that he’s strong, and to let him do things, to ask for help. I am thankful for that discussion, and thankful he shared with me something that he needs from me. I am thankful, too, that I have something I can concentrate on doing that will help M.
6. I am thankful for movie nights in bed.
7. On M’s birthday weekend in early May, we went to this place called Tai Chi Wellness. They do Chinese accupressure massage, and M had been a couple of times before, including once with me. On this day, they asked if we wanted to try this thing called cupping. Helps athletes with pain, pulls out toxins. M tried it. They covered his back with 16 glass cups. When it was over, he looked almost like a cartoon character, his back covered in spots varying in color from light pink to almost aubergine. The darker the spot, presumably, the more toxins that have been pulled out and brought to the surface. Then, within an hour or so, he grew increasingly nauseous, to the point that, several hours later, he actually became violently ill. But then he felt better, relaxed. Fast forward to this whole shitshow swirling at present. Neither of us said anything about the cupping session, but it had been in the back of my mind that somehow it was–it is–relevant to what’s happening now. M finally spoke up the other day and said he was thankful he’d had that done, that it seemed to indicate something was off, because he hadn’t felt right since. I’m not sure how thankful I am, because a darker part of mind wonders if it somehow opened something up in his body that should have stayed closed. Then again, if the thought of that session, taken in aggregate with everything else over the last eight weeks, got M to the doctor last Monday, then I’m grateful.
8. I’m grateful M went to the doctor…
9. …and I’m so very thankful for Dr. Scalzi and her push to discover what’s really happening.
10. At the end of May, I was talking with a recruiter about a VP job based out of Chicago with Weichert. I was as perfect a candidate for the position as they were likely to find. But I didn’t want to relocate, and my pay demands were too high. I don’t KNOW this for sure, but I have to believe that’s why our conversations ended, no job offer, not even an interview. Or maybe they just thought I was a bitch. I don’t care. I’m so thankful now that nothing came of this.
11. I’m thankful that M called to me while I was waiting for the shower to warm up yesterday morning. He was lying on the bed, and he asked me to come around behind him and cuddle him. It was the absolute best start to the day.
12. The beauty of the black birds I saw against the white clouds and blue sky.
13. The text my mom sent that read “Conquer” and nothing else.
14. My parents, Carrie, and David, because they care for us and they support us.
15. My friend Kristin, because she is the only Wheaton friend I’ve told about this so far, and she remembered that M has a doctor appointment today and texted me, wishing M luck and prayers.
16. My boss and my team, for their empathy and understanding and willingness to lend a hand.
17. Running and writing. These are my outlets, and my relief vessel in a sea of worry.

There is more I’m forgetting, and there will be more to come. In the week leading up to my grandma passing away, when I had tuberculosis, when I was struggling with abuse and eventual divorce from my second husband…there were moments to be grateful for, there were angels who stepped in to help, there were moments of transcendence and beauty. The moments will be there, the angels will come, and that is what’s going to carry us through.

Today is Monday, July 9, 2018. It’s been exactly a week since this agonizing wait for answers began. It ends tomorrow, or so I hope. We see Dr. Clayton Hudnall with Urology San Antonio tomorrow at 1:40 p.m. M is in tremendous pain, and anymore it’s hard to say how much of it is disease-related, and how much of it is the stress and frustration of thinking we know what the diagnosis will be, but not actually having a diagnosis, and so just sitting here with our collective thumb up our butt, unable to action on anything. Our only aim is to walk out of that appointment tomorrow with a definitive answer. We need to be able to name our enemy, devise the battle plan, and then go to war.

Speaking of war, you know how you watch those war movies with those scenes of soldiers in the hours leading up to battle? They joke and give each other shit, it’s like they’ve found a way to wall themselves off from fear, like they create some sort of emotional bunker. But as the clock winds down and the battle approaches, they get quiet, they seem to be turning inward, doing their final mental and emotional preparation in a very deep and somber place. I don’t know if that’s what it’s like in real life, but I have to imagine something like that happens. This is what I was thinking about driving home tonight. Over the last few days, without really realizing it, I’ve been able to carve out a tiny little bunker for my heart and mind. If I try to imagine what the bunker looks like, I see a small, spherical chamber made of concrete with this weird seam around the middle, like an equator, or–this’ll sound weird–like what you see on one of those bath bombs you drop in your tub that get all fizzy. Anyway, it’s a small place, and I can only really curl into a ball to fit, but it’s not uncomfortable. From inside, I can safely look outside and watch this whole situation, see how big and unwieldy and ominous it is, but not be buffeted by it. It’s how I’ve been able to talk about this situation with M without bursting into tears; how I’ve been able to speak cooly and calmly with my parents about what’s going on; how I was able to have a useful, constructive conversation with my cousin Carrie, who JUST went through a version of this with her own husband less than a year ago. It’s how I’ve been able to go to work and set a tone of normalcy with my boss and my direct reports. It’s how I’ve been able to laugh and joke and think rationally. It’s how I’ve been able to do laundry, sweep floors, cook meals, feed dogs…in short, from inside my bunker, I’ve been able to keep shit together.

When I got home from work tonight, M was on our bed, his face contorted in pain, eyes shut. This is largely how it’s been this last week, unless he takes the Tylenol 3 Dr. Scalzi prescribed, which he tries very hard not to do. I went for a run/cry tonight, only two miles, because seeing M like that, I don’t want to be away from the house.

It is a repeated gut punch to see my husband in so much pain. This has been the longest week of my life, and probably his, too. But it’s the final hours before battle. Time to crawl out of the bunker.

At some point on the morning of Wednesday, July 4, 2018, M missed a call on his cell. It was Texas Med Clinic. M called them back. Dr. Scalzi was with a patient, but would M mind holding? Yes, he’d hold.

A short time later, Dr. Scalzi got on the phone and gave us the results of the PSA test, as well as the bone scan. M’s PSA blood count was 206. What is normal? Normal is less than four. And the bone scan? Abnormalities spotted in several locations in the spine.

Dr. Scalzi was now pretty freely using the word “cancer” to describe what was happening, but said any kind of diagnosis would have to be made by the urologist. She said the likely next step with the urologist would be to perform a biopsy. She also seemed to almost be musing to herself about how we might have caught this problem earlier, but said she couldn’t think of a way, even if M had been having regular check-ups. PSA testing isn’t done on otherwise healthy, asymptomatic males under the age of 50. She asked if M had any family history of prostate cancer. M doesn’t on his mom’s side, but M’s dad has never really been in his life, nor has it ever seemed to have been one of those issues that either his dad or M’s siblings on that side has ever raised, so there’s never been a good way of knowing whether prostate cancer runs on his dad’s side.

Dr. Scalzi told us that she’d taken us as far as she could, and that the urologist would take the case from here. M asked her if she was breaking up with us. It was funny. We needed funny in that moment. She laughed. She told us to go do something fun, take our minds off all of this.

I went for a run after that. But before I did, I mind-fucked myself pretty thoroughly on the internet.

I researched what PSA counts mean. A PSA count of 206 is high, like, really high, and M’s prostate is enlarged. It’s hard to argue that something is very, very wrong with his prostate, even if it’s not cancer. But if it walks like a duck and talks like a duck, it’s probably a duck, right? So my assumption was–still is, until I’m told otherwise–that it’s prostate cancer. On top of that, there are also abnormalities in M’s spine, and reading the CT scan report, the radiologist went so far as to note evidence of metastatic disease in the spine. “Metastatic”…translated, it means shit has spread. If you spend any time on the Google, looking up prostate cancer, you’ll quickly discover that prostate cancer can and does spread, normally to the surrounding tissues, with the bones–the spine, in particular–being a notable jumping off point for prostate cancer’s continued journey.

I thought back to only two nights earlier, on M’s and my walk through the Red Lobster parking lot, feeling good about, yeah, maybe M has prostate cancer, but we were sure we’d caught it early. But if prostate cancer has spread to the spine, then have we still caught it early?

Let me pause here to point out the fifth lesson I’ve learned so far: WebMD is NOT your friend. According to my kitchen table research, prostate cancer is perfectly manageable, and the survival rates at 96% or higher, when the cancer is confined to the prostate and hasn’t spread. Once it hits the spine, according to the interwebs, survival rates plummet to less than a third, and on one site in particular that I looked at, less than 10%.

At some point, on some future blog post, I’ll explain my past and how M and I met and got married and all that. For now, suffice it to say that M and I met just over two years ago, and we got married four and a half months after that. He’s been married once before, I’ve been married twice before. We felt–still feel–so blessed to have found each other, and so profoundly like the Universe meant for us to be together. I have never felt so fully and totally loved by another person, nor have I ever so freely and happily given my love to someone else. When I met M, I felt such contentment, such fulfillment, such relief, such satisfaction. It was as though I’d been running and running and running, as fast as I could, no finish line in sight. And then there he was. I was finally done running. I had finally found the finish line. M is the rest of my life.

The information I’d found on the Google about prostate cancer and how and where it spreads sucked the air out of my lungs, dropped my stomach to the floor, made my hands clammy and my heart race. And there were tears, of course. It took 20 minutes to pull it together enough to get out the door to run. Once outside, it was hot and humid and sunny and I couldn’t stop breaking into sobs, which makes it very hard to run, or to give the Universe the very stern talking to I thought it deserved. I ran, anyway, and when I wasn’t sobbing, I was physically numb. But after a while, after the mental and emotional circus died down enough to manage coherent thought, the first thing that emerged in my mind was, “We are warriors!” M and I have both been through some shit, very different shit, one from the other, but loads of shit all the same. If we are nothing else, M and I are resilient, stubborn, tough mother fuckers.

“We are warriors, this is what we do!” I told myself, huffing and puffing in the heat. But then I broke down in tears again. I know this pattern will repeat, it already has in only a few short days. One moment, I will be a warrior, kicking ass with and for my husband; and in the next moment I’ll shrivel into a ball of snot and tears. What a fucked up version of yin and yang THAT is.

Later that July 4th afternoon, we took Dr. Scalzi’s advice to go have some fun. We went to the 4:20 showing of “Jurassic World” at Alamo Drafthouse. We had some beer and some comfort food. It was escapism and it was pleasant.

On drive home, though, M said to me, “I don’t think we caught it that early.”

On Tuesday morning, July 3, right around 11 a.m., M and I went to Texas Med Clinic to do the blood draw for the PSA, and to get the orders for the nuclear, whole body bone scan. Dr. Scalzi had also made an appointment for us with a urologist for Tuesday, July 10, and we were to pick up that information, as well. M was especially tired and achy that morning. It wasn’t just his side that hurt, but between his shoulder blades, too. M and I are alike in that we both carry stress in our shoulders, so this mid-back/between the shoulders pain wasn’t a surprise, but it made the stabbing side pain and the generalized aching that much worse.

We arrived at the clinic, and between the bone scan order, the information on the urology appointment, and the blood draw, the front desk was a little confused. M was running low on patience, and in obvious discomfort. The young lady at the front desk, helpfully, went and got the doctor. After a moment, Dr. Scalzi called us back to an exam room.

Dr. Scalzi is cherubic: she’s short, she’s “fluffy” as they call it around here, and she has a sweet face and kind demeanor. If you’re going to get shitty news, this is the lady you want to get the shitty news from. She only gave us semi-shitty news on this particular day; the really shitty news would come on July 4, and I anticipate the shittiest of news is still a few days off. But on that day, in that exam room, Dr. Scalzi spent 20 minutes or more with us, explaining the results of the blood test and their interplay with the CT scan results. Yes, she had done this in short form the night before on our drive home from the imaging center. But to sit in a room with her, face to face, and have her spell it out and let us ask questions was both comforting and helpful. She said she suspected a possible prostate issue, hence the PSA test, and the bone scan would tell us more about the irregularities the CT scan picked up, as well as the elevated alkaline phosphatate levels detected in the blood test. She compared the whole process to being a detective working a crime. The way to solve the crime was to examine the crime scene, and then work to eliminate suspects.

She made it clear that she was not delivering, nor could she deliver, any kind of diagnosis, but in the face of the evidence presented so far, prostate cancer was a real possibility. “Hope for the best, but prepare for the worst,” she said.

Dr. Scalzi left the room to get a nurse to do the blood draw for the PSA test. I got on my phone and called the imaging center to make an appointment for a bone scan that same day. M’s appointment was set for 2 p.m. to get an injection of radioactive material. At 5 p.m., the actual bone scan would be done.

Dr. Scalzi returned a short time later to inform us that the lab that had done the blood work on M the night before, and had said they needed a sample of frozen blood to do the PSA test, actually didn’t need the frozen blood at all. They could use the blood from the existing sample.Win!

It is worth noting that Dr. Scalzi and Texas Med Clinic did not charge us for this visit.

When we got back to the house a little after noon, M laid down to rest. He got up and left for the injection and the bone scan around 1:15 p.m. He was back at around 7 p.m. I asked him if we could go in the closet, close the door and leave the lights off. I wanted to see if he glowed. He laughed a little, but he was so tired. Funny enough, we watched a few episodes of a Netflix series called “GLOW” that night. That particular coincidence didn’t even occur to me until just now. Huh. GLOW…it’s a good show, funny. It’s worth a watch.

 

 

 

Tuesday, July 3 marked exactly one month since M first had back pain. He hasn’t been sleeping well, he struggles to move on most days, and he shrieks in pain if one of our dogs jumps on him or he turns over the wrong way. M is a hard worker, he isn’t happy if he doesn’t do at least something productive each day, even on our rare, all day, Netflix binge watching days. In the summer, his favorite thing to do is to float the Comal River with friends. Two years ago, we crossed the Grand Canyon, south rim to north–24 miles, 5000 feet down, 3000 feet back up–in a single day. Last October, we one-upped ourselves and went south to north and back south again in less than 48 hours. We’re scheduled to do the same thing again at the end of September. Just over three weeks ago, I booked our first trip to New York City together. For Father’s Day, I bought him tickets to see the Yankees play the Texas Rangers while we’re in NYC. We have a trip planned with friends in mid-September to go to Mexico City for Mexican Independence Day.

My very best friend and favorite person can barely move. He’s exhausted all the time. He can’t do the things he loves to do and wants to do and looks forward to doing. And this is all before we even know what, exactly, is wrong.

By the time I got to Texas Med Clinic, M had already checked out and was waiting on the orders for the CT scan that we needed to take with us to the imaging center. After we got those, M and I dropped my car at my office and drove together to Baptist M&S Imaging near the Medical Center. On the way there, M gave me the run down on the results of the blood work Dr. Scalzi had ordered. M’s red blood cell count was a little low, meaning he was slightly anemic, but, like back pain, this wasn’t necessarily an unusual thing for M, he’d been mildly anemic before. His platelet count was also low, quite a bit lower than normal, and his white blood cell count was in the normal range, but also at the low end. None of these facts, by themselves, seemed to worry Dr. Scalzi terribly. Another test, one that measures the blood content levels of alkaline phosphatase, an enzyme involved in the production of bone cells, showed a quite-a-bit-higher than normal count, but, again, Dr. Scalzi didn’t seem alarmed. Kidney stones seemed the logical culprit. The story we told ourselves was that the CT scan the doctor had ordered was primarily to confirm the presence of kidney stones, and secondarily, it would rule anything else out.

There was a cautious sense of relief on the drive across town to the Medical Center. After a month of pain and discomfort, it looked like we finally had a diagnosis.

We checked into the imaging center at around 6:30 p.m. Sitting in the waiting room, we joked about how Dr. Scalzi hadn’t needed to examine M’s nuts and what a bummer that was and that maybe the CT scan people would need to touch his nuts. We looked up remedies for breaking apart kidney stones and getting them to pass. We checked our emails. After about 20 minutes, M was called back for his CT scan.

As I waited for M to return to the waiting room, I learned the first of several lessons learned this week: you can’t count on waiting rooms to have a decent magazine collection, so always bring your own reading material. The guy sitting across from me had a book. I had envy issues.

M returned to the waiting room after about 20 minutes. “Still didn’t touch my nuts,” he told me, and we laughed.

We were to remain at the imaging center while the radiologist reviewed the results and sent them over to Dr. Scalzi. They said it would be about 30 minutes. By now it was well past 7:00. We were both getting hungry, and M wanted water. Second lesson learned: bring water and snacks if you’re going to be sitting in a waiting room. I went across to the Shell station and bought water and beef jerky.

Lesson three: for whatever reason, waiting rooms are fucking freezing, beyond what a light sweater can fix. Bring a blanket. Earmuffs. Mittens. It was positively arctic in there, made worse by a case of nerves brought on while waiting on the CT results.

After about 30 minutes had passed, the front desk people advised us that Dr. Scalzi wanted another test run. Apparently she’d talked over the CT scan results with the radiologist, and they’d decided an ultrasound of M’s testicles was in order. Finally, someone was going to touch M’s balls! This made us laugh…but it also made us nervous. I didn’t ask M, and still haven’t, but I think he really wanted someone to perform some kind of exam on his testicles, as the left one was hurting him, and he wanted to understand why. So, while the order for the ultrasound was disconcerting, there was a sense of relief to knowing the test might tell us why M had pain in his left nut.

As late as it had become, the ultrasound technician had gone home for the night, so we had to wait for the on call technician to come in. M and I walked around in the parking lot to warm up and stretch our legs.

Another 20 or 30 minutes passed before the technician, a sweet young woman named Beth, arrived and we were called back to the ultrasound room. Beth left us alone in the room long enough for M to undress from the waist down and get himself positioned on the exam table.

“I’m gonna get my balls touched. Yes!” M joked, accompanied by a fist pump.

“You could have gotten that for free at home,” I told him. We laughed. It seemed like time was unwinding in little moments, little bursts. This seems to be a theme that’s continued over the last few days. Little moments of love, laughter and beauty I wouldn’t have fully noticed, didn’t fully appreciate, before this slow motion trainwreck started. Getting into my car after work yesterday, I noticed how blue the sky was and how pure white and fat and fluffy the clouds were against it, and how a flock of birds were flying around high, high above me, how black their bodies were against the white of the clouds. I know moments like this happen every day, but I’ve rarely, maybe never, experienced them like this. Despite the fear, the sense of dread, the not knowing exactly what we’re up against, I am grateful for the gift of these previously unnoticed moments of beauty.

Back to the ultrasound room. Beth started the exam. I sat in a chair behind her, a little to the left, where I could see the computer screen. I had no idea what I was looking at. She would stop periodically to digitally measure stuff. There was what looked like a heat map–little areas of red and blue–that she would overlay on the black and white ultrasound images. There were words describing the area we were looking at. Lesson four: I’m going to learn a LOT of Latin on this journey. I sat there on my phone, looking up words and only mildly understanding the definitions and/or where things were located. There was a view where you could detect M’s pulse, hear the blood moving. I joked that the baby had a heart beat, but otherwise we didn’t say much.

When the ultrasound was done and M was dressed, Beth walked us out. She didn’t give us any feedback on the ultrasound, but she did provide us a copy of the CT scan report.

It was nearly completely dark when we got in the car. I drove, Michael read the CT scan results. Neither of us said much. M would tell me later that the radiologist’s comments on the CT scan report noted that the results suggested testicular cancer.

Dr. Scalzi called as we were merging onto 281. She said the ultrasound showed M’s testicles were fine, no testicular cancer. Biggest sigh of relief, ever. EVER! I felt at once exhausted and giddy.

Dr. Scalzi explained the other findings on the CT scan. M’s lymph nodes were swollen in the lower abdominal/groin region. There were some abnormal spots on his lower vertabra. His prostate was slightly enlarged. She explained that swollen lymph nodes are indicative of some sort of infection or inflammation in the area. The abnormalities on his spine could indicate some sort of age-related deterioration, but for an otherwise healthy, 44 year old male, this would be unusual. As for the enlarged prostate, pretty much all men experience an enlarged prostate in their later years, but for a still relatively young and healthy man, such a condition is unexpected and odd. All of this taken together with the abnormalities revealed in the blood test gave Dr. Scalzi reason to continue investigating. She wanted M to have a nuclear bone scan done the next day, Tuesday, July 3. And she wanted M to have the PSA test run on his blood. She said we could come by the Texas Med Clinic the following day to do the blood draw for the PSA, and pick up the orders for the bone scan.

Kidney stones never came up.

M and I were hungry. We stopped at Red Lobster on the way home. Walking from the car into the restaurant, the shared relief we felt was practically a tangible thing. Testicular cancer was ruled out. We still didn’t have concrete answers, and our inherent paranoia combined with Dr. Scalzi’s explanation of the CT scan finding, led us both to the conclusion that prostate cancer was a real possibility. So, too, was bone cancer. But the internet told us that prostate cancer was 100% treatable, and bone cancer nearly as much so. And we were catching it early. That’s the story we told ourselves, and it’s honestly what we believed.

We placed a to go order at the bar and had a celebratory beer while we waited.