Tag: neuropathy

And So It Begins. Again.

Sometimes I feel like a broken record. My husband has diarrhea. He’s in bed for 5 days straight. I have to do everything by myself. I don’t like this. blah, blah, blah

Rise. Repeat.

I’ve just stopped complaining because what good does it do? lol I doubt my friends want to hear my sob story about how my poor husband is on chemo (again) and I’m struggling with it (again) because he’s so tired (again) and I’m so lonely (again) and … you get the picture. Would you want to sit through that conversation every other week with me? No. No you wouldn’t. It sucks not having anything else to talk about. I hate how this consumes my mind and my conversations. Even when I tell myself, I’m not going to talk about cancer or chemo or any of that tonight, it just creeps into my mouth and the words come out. But I DREAD it. Going in for the infusion, seeing my husband walk around attached to a box pumping poison into his body every 48 seconds for 3 days straight. Getting the box disconnected, like he’s physically wired in, like an old school phone that needs to be disconnected when the service is changed. Seeing him in bed for days on end, leaving me on my own to do everything. All of is just sucks. It sucks for him, it sucks for me, it sucks for the kids, it sucks for our jobs, it sucks for everyone. And I KNOW it could suck A LOT worse! I mean, even with all of this, I feel like we still have it pretty good! With all the support we have and the fact that we’re still young-ish to bounce back from this complete financial blow, I mean, it could be WAAAAY worse. But in the thick of it, it just sucks.

So my husband went in for chemo yesterday, as planned, on Dec 26th. He did get the appointment, lol and asked me to go along with him. Almost immediately upon entering the chemo center, he started to feel sleepy. He hadn’t had ANY chemo yet, and he was already exhausted!? Ughhh This was not promising behavior. The infusion took way longer than it normally does, they needed to take another blood sample and we had to wait to get the results back before they could even begin any of his pre-meds. His ANC was right at 1,000, the minimum threshold for eligibility, so he qualified, but barely. He did gain a few pounds, up to 193, so that was good to see! He has started to feel the neuropothy pretty steadily now and it is starting to concern him as he can sort of feel tingliness in his, ahem, you know, manhood. So he wants to be sure to nip this problem in the bud before it becomes something that is permanent — tho I’m not sure there is anything we can do at this point to stop it. It’s only going to get worse. We made sure to tell the oncologist about this and she agreed that this was not good and decided to lower the dosage by 25% to try to curb some of the permanent damage. We’ll see if that does anything.

So we get into the chemo treatment room and, my husband, bless his heart, he immediately lays down and starts sleeping. He basically sleeps for the entire 8 hours we’re there. (rolls eyes) When its finally time to leave, we get home and, mind you, all the kids are home because its Christmas break, and he empties the dishwasher then heads upstairs to bed. That was the last time we saw him that day.

He woke up this morning around 7:30am (after sleeping for 14 hours) got dressed and went into work! face-palm

I just don’t understand it sometimes. It sort of pisses me off because I feel like he wouldn’t be so exhausted these first few days while he’s on the chemo box if he didn’t stay up drinking and smoking until the wee hours of the morning the 2 days-ish prior to going in for chemo. I’m getting the short end of the stick here and it sucks. You know what I’d like? I’d like them to check his blood alcohol level when he goes in for his chemo treatment, I’m sure that would be an interesting find. I think that we can all agree that starting chemo in that condition is not ideal, and I’m pretty sure that’s what has changed and that is why he’s so sleepy these first few days. He never used to get loaded the day before chemo, now he does. Ughhh But who am I to say anything to him? He won’t listen to me. I digress.

So I’m hoping for the best with this round. But I feel like we are right on schedule for the same 5 month timeline that we had for the first 6 rounds. Note that all 12 rounds were SUPPOSED to be completed in a 6 month time frame — but here we are, 6 months in, and only 8 rounds completed. We started chemo, round 1, on July 2, 2019. We started chemo, round 7, on Dec 2, 2019. Which means it took my husband 5 months to complete 6 rounds. I have no reason to believe these next 6 rounds will look any different. Figure in 2-3 bowel obstructions, a surgery, maybe an illness that causes a hospital stay and at least 2 times where we’ll have to wait an extra week due to his ANC levels being too low, and there you have it, on track for another 5 months of this.

Lord help us all!!

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!