Tag: ANC

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!

Hello? ANC? You Have a Problem

To say the last few weeks have been frustrating would be an understatement. Both because of ongoing differences of opinion between myself and my husband, and, more prominently, because Andy’s ANC count has been abysmally low and is a constant thorn in our side. Right now, as I sit here in the chemo center, Andy is in the process of infusing round 5. If you are keeping track, we should be on round 7 right now. Instead, here we sit. Round 5.

Its impossibly frustrating to be constantly told that you have to wait another week. We plan our lives, our schedules, our kids schedules, our work schedules, literally EVERYTHING around this ridiculous chemo — and to have to reschedule everything because his ANC counts are too low EVERY. SINGLE. TIME. This shit is getting old. He is not responding to the chemo well, its been much harder on him that anyone could have anticipated, his body is just not tolerating it.

And there is nothing we can do about it.

So, instead of getting the chemo every other week, we have gotten it every 3 weeks. He has never once, NOT ONCE, received his chemo on schedule. He’s getting the Neupogen shots, they even LOWERED the dosage of his chemo for round 4 thinking that the lower dose would give his body a fighting chance to recover properly, but nope. We came in last week (on the 2 week schedule he’s supposed to be on) and his ANC was still at 0.8. We just can’t get it any higher on that 2 week mark. We’re doing the shots, we lowered the dose — they REALLY don’t want to lower the dose any more because, I mean, at what point does it just become completely ineffective? At what point are we putting him through all this awful chemotherapy for it to have no effect on the cancer whatsoever?

Our oncologist insists that she has witnessed people’s bodies just somehow miraculously decide to start cooperating with the chemo and handle it better after a period of time, so she decided to keep the same (lowered) dosage for him for this round. But Andy and I are convinced that it won’t be enough and we’ll be in the same boat in 2 weeks when we come back. Ughhhh It is just so damn frustrating.

This is just so much harder than I ever imagined it would be. Even as I sit here, I’ve seen him receive this chemo 5 times now. It never gets easier for me. I still feel a wave of panic as they bring it out and hook him up. Knowing he has this special port in his chest for easier access. Why do I want to make this easy for them? I want to scream at them to get that shit away from my husband! Completely irrational, I know. But it still makes me uneasy knowing this poison is going into his heart, knowing how it’s going to make him feel and how his body is basically withering away from all this. He has no muscle tone left, like, none. He gets winded walking for too long or heaven forbid he have to go up more than 1 flight of stairs. He’s lost more weight, only 2lbs this week, but still. His 34 waist pants are literally falling off him. Time to sneak the 33’s I’ve stashed away, somehow knowing this is what would happen, into his wardrobe.

Beyond the actual chemo, this week has been good, but the few weeks prior to this, it really was constant fighting between us. His smoking has gotten SO much worse. He went from maybe 1-2 nights a week to more like 4-5 nights. I went through, one day, in a total rage, and literally threw away all his smoking shit. I hid all the lighters in the house, all the matches and anything that could be used to light a cigarette. I threw out all his vaping things all the battery chargers, all the liquid nastiness juice crap that goes inside them. I cleaned out his bin of smoking shit he kept “hidden” in the basement. I took all of it and literally threw it in the dumpster. I couldn’t take it any more. Everywhere I turn I hear people dying from vaping and smoking and it was all just too much. He already has cancer for Christ’s sake! So I tossed it all out. And it felt really, really good.

And he was SO mad at me. I mean, I have never seen him so mad. Now, his brand of “mad” is very different than mine. I could tell I hit a nerve because he started giving me the silent treatment. But in my mind, this was actually PROGRESS! I mean, I had been trying anything, everything to get him to react, and nothing I did garnered any type of reaction from him other than complete indifference or apathy. But this, THIS, I hit a nerve, and I hit it hard. This was probably the biggest fight we’ve ever had. The day after he realized I got rid of all his shit, he bagged up all the nice clothes I ever purchased for him and threw them into one of those parking lot donation boxes.

–Side note, my husband has a bit of a slob problem. He would probably still be wearing his size 38 waist pants at this point if I hadn’t hid them and gradually replaced them with smaller sizes. Srsly. He refuses to buy anything new from an actual store, he will only get his clothes from Goodwill or second hand stores. Which there is NO shame in, but he buys clothes that are 2, 3, 4 sizes too big for him! He has no style other than sloppy, and could really care less what others think about it. Which, again, is totally fine when we’re at home, sure. But I, on the other hand, while I am not a fashionista by any stretch of the imagination, I do like to buy nice clothes, but more importantly, clothes that FIT! So, I’ll go to Nordstroms or somewhere, to buy Andy clothes, then I’ll wash them and tell him I got them from a second hand store. That is the ONLY way he will wear the clothes I buy. It’s ridiculous, I know, but its SUCH a thing between us! I just want him to look nice in public, is that too much to ask? I think not.

Anyway, he knows his lack of understanding of the phrase “clothes that fit” bothers me, so he rounded up all the things he could remember me getting for him, put them in 2 big trash bags, took them to a parking lot donation box and tossed them in. I actually had no idea what he was throwing in there at first, but I figured it out pretty quickly. After that, for about 24 hours, it was a series of silent passive aggressive slights in my direction. I was LIVID. I was over it, I just wanted peace and I was sick of feeling angry ALL. THE. TIME. I hate what this cancer has done to me and how it has forced this huge wedge between my husband and I. I just want my old life back, like the one that was calm and peaceful and we were content with each other. I just want that life back!

Whatever, that’s not my life now.

So, that night, while he was ignoring me, chain smoking outside on our back patio, I decided that we were going to discuss this. I was doing the talking, he was happily watching football on his phone, trying to ignore me. But I wasn’t giving up. I sat down right next to him and I put my face about 2 inches away from his face and I was just sitting there, in his space. Sometimes I’d speak and say awful things, sometimes he’d speak and say awful things and then blow smoke in my face, and then sometimes I’d just sit there. We did this for at least an hour. It was hard, I was at the end of my rope, which is surprisingly short these days. We finally did end up talking, but there wasn’t really a resolution. It was just more of the same.

The next day, he was scheduled for chemo, so we went in, and, surprise, surprise, he didn’t qualify. That was a week ago today. That evening I thought that maybe we should start to be more positive, so I told him about an idea I had to only say nice things to each other for the whole week. If we had something that was not nice, we would just not say anything. So this week — its actually been pretty good! I sort of heard about doing this on a TV show, and it was kind of an idea in jest, but it actually did work! Things have been wonderful this past week!

Have we talked more about the incident? No.

But we also have not fought and have been totally on the same side all week! This past weekend was our 6th wedding anniversary, so I had made reservations at a restaurant about 4 months ago, and the whole evening was amazing! Since he missed his chemo last week, he was feeling really good, which I was so grateful for!

Now, hopefully, we’re back to a good pattern. We do not anticipate that he will qualify for his next scheduled chemo treatment in 2 weeks, so we’re planning everything around the 3 week schedule, just to try to stay ahead of this. But for today, his chemo is almost done and he’ll go home with his chemo-sabe box, then he’ll feel awful on Wed/Thrs/Fri and probably on Sat, but by Sunday, that will be a good day.