A Shitty Problem

No way to sugar coat this one, we’re back in the hospital again with another bowel obstruction. A really shitty problem that I feel like we just battled with. As of now, I’ve been up since about 3AM when my husband started stirring enough in bed that I took notice. Around 3:15, he got up and exited the bedroom. 15 or so minutes later, he came back in and attempted to lay down again. I could feel him wiggling and moving his knees and as he was laying there, I could tell that he was uncomfortable. Then he got up, moved to the floor and assumed the child’s pose position. I knew immediately what this meant.

Another bowel obstruction.

So, we gather a bag and I appoint my oldest teenager in charge of the 5 year old should he wake up and notice we are not there. I tell her that we’re headed to the hospital and I’ll be back before she leaves for school. So off we go directly to Barnes downtown (a 40 min drive away from our house) knowing that if we go anywhere else, we’d be transferred there anyway and then we’d have another $800 ambulance bill to contend with. (rolls eyes) So we arrive around 4AM and we get checked into the ER. Once they decide to admit my husband, they roll him off for a CT scan, and I decide to head back home hoping I can get back with enough time to catch a quick nap before I do preschool drop off for the 5 year old. However, when I get home, my mind won’t shut off, and my attempt to sleep for a bit is undermined by my anxious brain. So I get up, drop monster off at preschool, make sure my babysitter is avail to pick him up, and rush back to the hospital.

Now, almost 9:30AM, I weave my way from the parking garage up to my husbands room on floor 6. Back together with our old friend, the GI floor, lol Clearly it had been too long since we’d seen the whole staff! The only bright spot here is that we’ll be back under the care of Dr. Glasgow. Our favorite surgeon! So now, here we sit, my husband with this nasty NG tube up his nose and the pump running to suck all the contents out … only nothing is coming out. I realize that every obstruction is different, but last time there were buckets of gunk coming out of my husbands stomach almost immediately after inserting the NG tube. This was gross, yes, but it also alleviated the pressure and the pain he was experiencing. But this time? We’ve been here now for almost 12 hours and he’s still in pain with lots of pressure and NOTHING is coming out of the NG tube!? So I’m not sure what that means.

Fast forward 24 hours later — WOW. Things moved fast yesterday. After hours and hours of my husband being in pain and being uncomfortable, we finally saw our friend Dr. Glasgow around 5pm. He said that the results of the CT scan clearly showed a closed loop bowel obstruction and this was very different than the bowel obstruction he had last time. He said this type of obstruction rarely cleared on its own and suggested surgery ASAP to resolve this. He was worried that if they waited any longer the blood flow to that part of the bowel would be so restricted that the bowel might die and he’d have to remove that portion. Not something we wanted. The thought of putting my husband through yet ANOTHER surgery was literally unbearable, but we really had no choice. We could have waited to see if it cleared on its own, but 1. Andy would have had to suffer through another night in pain and 2. we could have risked further damage to the bowel. So we agreed to proceed and my husband was immediately prepped for surgery. Since Dr. Glasgow is intimately familiar with my husbands history and innerds, he said that while he had him open he would also look around for any signs that the cancer had returned. Honestly, this was the ONE bright spot in this whole awful ordeal! I mean, our cancer surgeon, opening my husband back up to physically look inside with his own eye balls??! This is EXACTLY what I wanted! I don’t trust a CT scan as far as I can throw one. They don’t work for this type of cancer, so I was elated, overjoyed even, that he offered to take a look around while he was “under the hood” anyway!

The surgery only lasted about 45mins, but they went in through the same incision they used last time … and they cut him just as wide open too. Ughhhh My poor husband. The good news, tho, was that everything went just as planned, no surprises! Which I was so happy to hear. Dr. Glasgow said there were 2 prominent “bands” of scar tissue strangling the bowel and another band that was almost as close. He removed them and even went through and removed scar tissue from other areas on the intestines that looked like it could potentially turn into a bowel obstruction of some sort. Then, (my favorite part) he took a look around for any signs that the cancer had returned … and it HADN’T! He didn’t see any signs of recurrence! Hallelujah! He said that he resected a larger portion of scar tissue and sent that to pathology, just to be sure, but he did not expect that to come back positive for cancer. I can’t even begin to describe how relieved I felt when he told me this! I mean, here we were, not even 6 months out from my husbands big HIPEC surgery and he was still clear from the big clean out! Breathe. Such a wave of relief! This is the thing I’ve been most worried about; Tracking this cancer. It seems that CT scans and blood work are extremely unreliable to detect growth, but a surgeons eyes? That is the detection mechanism that will never fail, will never be unreliable and will always provide me with the fullest, most complete picture and the most comfort as we move forward. Now, I realize I can’t really expect this to happen every 6 months, or even every year, but I’ll take it when I can get it, and this is pure joy for me! A nearly 100% confirmation that the cancer had not returned!
…pending the pathology from the scar tissue sample.

So now its a bit of a waiting game. Since he had this surgery, chemo will have to go on hold for 4-6 weeks. I wonder if I can talk my husband into taking the rest of this year off from chemo and having the holidays, then finishing off the remaining 6 rounds in January? I mean, haven’t we been through enough this year??! For reelz. Who knows? lol For now, its back to healing, and hanging out around the house, and more episodes of The Office. (rolls eyes) Which I’ll gladly take any day over seeing my husband in that kind of pain!

Fatigue Frustration

Over the course of the last week Andy has slept more than he ever has. We were so surprised when we went in for his infusion at the 2 week mark for round 6 — and he actually qualified to receive the chemo! His ANC was at 1.3! Andy and I were both elated …and dumbfounded. And frustrated, since we had already planned for this week not to work out and that we’d be back next week for the actual chemo infusion. But, nope, that’s not our life! No planning for us, nope. None.

So he got the chemo, for the first time EVER, on schedule, at the 2 week mark. But even before he received this round, he seemed exhausted. Over last weekend we went to the pumpkin patch, its close to Halloween and picking pumpkins is one of my favorite family traditions! Andy was so exhausted after we came back that he literally laid down on the couch and slept all afternoon, into the night and right through to the next morning until about 9am when he finally woke up. I counted it. It was 18 hours straight. 18. Hours. Straight. What I wouldn’t GIVE to sleep 18 hours straight! Then he went to bed at 8pm that night!? I get it, you’re exhausted, but bloody fucking hell!?

So chemo was this week. We just came home from getting the chemo box removed and his symptoms are intense. I’m not sure if its because of the cumulative effect of the chemo and now that he’s on round 6, hes just feeling the effects of everything? Or if its because of the lessened recovery time? Since he’s never had chemo on the 2 week cycle, its always been 3 weeks, we’ve never actually got the chance to see what an every 2 week infusion would feel like before now. Either way, he freaked out yesterday when he went into work and his fingertips were numb and tingling and painful. This is the neuropathy I’ve been warning him about. He said it got progressively worse from about 9am to noon when he called the doctors office and they told him to go to the ER!? I’m not entirely sure what the ER could have done for him at that point, but regardless, he decided to “clear his desk” at work before heading to the hospital. By the time he was done and ready to go, the numbness had subsided a bit and it was no longer that bad. So he ended up not going. He didn’t tell me any of this until about 3pm when he had already decided that he was not going. I encouraged him to reach back out to the doctors office and see what they had to say, so he did. He called and left 2 messages but since it was already 3-4pm, it was basically closing time and he never received a call back. It was fine since we were going there the next day anyway. Then this morning, he was attempting to make breakfast and he was dropping cheese from the refrigerator onto the floor and telling me about how his fingers were just not working with cold things. Me, being prepared for this exact situation, I show him where the gloves were that I stashed on top of the fridge, just for moments like this. I had done this and told him about the gloves a while ago, but it had never really been an issue until this point, so he likely forgot about it. Chemo brain and brain fog are REAL people! He forgets things and is certain that he has NOT forgotten things, and its so frustrating for both him and I! For example, last weekend, we were talking about replacing the tires on my husbands car. He drives a ton for work and his tires were looking pretty bald. So, we stood outside, near his car, and had an ENTIRE conversation about getting a few different estimates and then going with the one we thought was best, etc… yadda, yadda, yadda. Not really a big deal. But he legitimately forgot we even discussed this whatsoever! So when I asked him for an update on what he found out about the tires, he looked at me like I had 2 heads! He had this puzzled look on his face like he had NO idea what I was talking about. He actually did have NO idea what I was talking about. He misplaced the entire conversation in his brain and was absolutely convinced that we did not talk about the tires and I was the one who was mistaken. I just smiled and nodded and brushed it off. Of course I did give him some trouble about it a few days later, lol Joking of course, I mean, if you can’t make fun of cancer, what can you do?

But the exhaustion. Oh dear Lord! The exhaustion! I’ve stated before that I just totally don’t get this whole exhaustion thing. Geez. I mean, come on! It’s only going to get worse! And, I know, I know. I understand that he’s on chemo and that this causes it. I know there is nothing he can do to prevent it or mitigate it. Yes! I know all these things! I’m not upset or angry because of it, its just SO frustrating that I’m basically a single parent while he’s SLEEPING. It just rubs me the wrong way. I can’t help that, and I’m not going to apologize for feeling that way. What can I say? I’m an ass hole. Just because I know all these things, doesn’t make them any easier to accept. I don’t have to be happy about the fact that all this is happening, I just have to get through it. And if I have to get through it, I’m going to bitch about it the whole way. It’s a cycle that clearly works for me, lol So here’s my husband, at the chemo center, getting the chemo box taken off and getting fluids, asleep, cool, calm, not a care in the world and completely unaware of anything that’s happening. And here I am. Well, being me, a ball of anxiousness. Watching my husband hooked up to tubes that drip God only knows what. I don’t know why I have such a problem with this port in his chest!? I mean, I don’t have a problem with IVs that go in your arm. Why does it just seem SO. Much. Worse. because its going through this port?? I can’t get over it. It is what it is.

So now he’s off to sleep for about 72 hours. Meanwhile, I get to hold down the fort and keep everyone sane and fed and to the right practice/class/activity at the right time…maybe a little late, lol

I’m not sure what symptoms we’ll encounter this round. It seems like every round is completely different! The diarrhea has actually been SO much better for a few weeks, which my toilets (and me) are SO grateful for!! He lost another 3.5 lbs, but he was up a few pounds when we first checked in on Monday, so its sort of a wash. He stays between 190-195 lbs now-a-days. He was down to 186 lbs at one point, but he’s had a bit of a comeback and has held fairly steady at 190-195 for a few rounds now. Hoping that trend continues!

Breakthrough!

Today, was a good day! Andy and I had the first meeting with our therapist. I am not above asking for help, and we needed some help. The past couple weeks, maybe months, I’ve felt like our relationship has gone from bad to worse. At a time when we should be coming together, focused on us, being happy, and making memories as a family with my husband… all I can focus on is how awful I feel, and how that makes him feel awful. We’ve been at an impasse for quite some time. Our arguments always end in the same way, regardless of what we were attempting to discuss. We can’t seem to find common ground or even middle ground, and this problem is way above my pay grade, so I reached out to our therapist that we saw years ago.

Andy and I have always had communication issues. His thought process is just so different than mine and I struggle to understand it. When we were dating, it was tumultuous, to say the least. On, off. On, off. Break up, back together. It was a lot of ups and downs. A lot of really high highs and awful low lows. When things finally seemed to even out a bit, I allowed him to move in with me, and things were good for a few years. But all that ended abruptly after we decided to take the plunge and build a house together. We ended up putting down a $6k deposit and signing a contract to build a new home and start our new life. Turns out, he wasn’t ready for that, he wasn’t ready to do any of that. So that night, after coming back from signing all the paperwork, I was on cloud 9, but Andy? He was silently retreating. A few days later, he made a choice. He left. Literally, left. And didn’t come back. He packed up all his things, took his TV and a single piece of furniture that he had brought with him when he moved in, and he left me. I was devastated. I packed up what I could and temporarily moved in with my parents. I slept 15 hours a day, I lost 15lbs because I just stopped eating, I wasn’t hungry, I didn’t care any more. My parents took care of me for those few weeks. It was awful. Painful. I have NEVER felt that way before. I have never felt that way since. I was, for all intents and purposes, lifeless. Completely and overwhelmingly heartbroken. But I picked myself up again, once I got over my pity-party, and tried to move forward.

Everything worked out, of course, there’s a loooooooong story here, lol But we were apart for 4 months, and once we got back together, I told him that was it. I wasn’t doing that any more, I was over the ups and downs and constant gray area that we always found ourselves in. And by God, I meant it. So I researched and found an amazing couples therapist in our area, and so began the healing process in our relationship. And healing we did! Blissfully healing and in complete sync with our communication. Our differences seemed to roll off our backs and all the things we agonized over for YEARS just seemed to become a non-issue. We were married about 6 months after we got back together and we lived this way, not in perfect harmony, not nearly, but on the same page at least, for many years.

But the differences between us have become exaggerated since this diagnosis began, and its at a tipping point now where every little thing sets me off, and I end up exploding all over the people I love the most. We hurt the ones we love the most, this is true. But I can also recognize when its time to call in the big guns.

It is time.

So last week, when my husband and I were in another dead-end argument, I told him that we needed to call the therapist. He agreed. We both felt like this impasse was nearly insurmountable for us to navigate without help. I reached out to our therapist the next day. Here’s the thing. Andy and I want to be with each other. We want to be together. We both feel compelled by a force greater than us that this was somehow meant to be. I love him more deeply than I have ever loved anyone, and he feels the same way. Above all, this has remained true. No matter how mad I am at him for smoking or being impossible, no matter what awful words I say to him to try to elicit a reaction, I love him. He truly is the love of my life, and I think that is why this whole cancer situation terrifies me. I can’t imagine losing him. Again. I know what it feels like to be alone without him, I know that pain, I endured it for 4 awful months. I don’t want that pain in my life. I want to be with him. I want him alive and in good health and with me for everything our life was supposed to be before this diagnosis.

Today we met with the therapist. It had been a while since we’d seen her and we had to catch her up on what had happened. It didn’t take long for us to get to the root of the problem, and me? Me. I was in tears in no time. Andy had heard it all before, this was not news to him. Everything I had to say to her was something that I had already said to him previously. And then she asked a very pointed question and Andy, somehow, went back to the beginning. He’s adopted, yes. But his adoptive father died when he was just 8 years old. It’s a terribly heartbreaking story, but my husband actually found him. He was the first person to see him hunched over, dead from a heart attack. This type of trauma leaves a lasting impression on a child, and I believe it is the single most important moment in my husbands childhood which has shaped, for better or for worse, the emotional skill set he has now. He admitted to the therapist that after his father died, he cried once at his funeral and then again 3 weeks later, but that was it. He considered himself the “man of the house” and with that, he believed he could no longer show emotion of any sort, that was a weakness. And this is how its been ever since. As he talked about his father to the therapist, I could see his eyes well up, I could hear his voice start to crack. I could sense that he’d never truly moved past this moment. Has he ever really mourned his father? I think to myself. I’m not sure. But he most certainly has sheltered himself from that hurt…and I get it. I understand why he doesn’t want to feel that pain. It hurts. Its awful. Why go there when you can ignore it and pretend it doesn’t exist?

Why?

Because sometimes, you get diagnosed with stage 4 cancer, and you have no choice but to go there and feel that pain. But if you’ve never learned how to deal with pain, and sit with that hurt, and overcome that awfulness, you won’t know how to handle it when it impacts you again.

So here he was, talking about his father. It was the first glimmer of emotion I have seen from him in months. It had nothing to do with cancer and everything to do with his father’s death. It was raw, it was real, it was freeing. I was privileged to be there to witness it. But it was gone as quickly as it came, and before a tear could emerge, he quickly moved away from that feeling. It floated past, as, I imagine, it always does for him, and he was back to being the “man of the house” who doesn’t let emotion get in the way.

But in my mind, it was a breakthrough.

In the same conversation, when the therapist was asking my husband about how he knew he couldn’t show emotion, and he could not articulate a reason why, she asked him why then, does he know he loves me? In that breath, with a shaky voice and more tears welling in his eyes, he explained to her that fate had brought him and I back together and that he loved me more than he could express. That we were meant to be together beyond a shadow of a doubt. He didn’t let those tears slip. No. He shoved them back down, but I had a lump in my throat the entire time as I listened to him articulate these words to the therapist, and I was at peace.

More was talked about and more was said, of course, during the course of the session. I cried, he did not, but we did engage in a conversation that met every expectation that I could have had. It was real, it was raw, he was vulnerable and open. Tonight, I feel very content. We have a lot of work to do, yes, but this is only the start! To know that we have already got this far and we’ve only just begun?? Its an incredible win in my book!