Chemo, Round 2. Take 2.

Last week was supposed to be Andy’s second round of chemo, but when we went in, his white blood cell count was too low. Fun fact: you have 5 different white blood cells that make up your white blood cell count, the one that is most important is the Neutrophil count. The Absolute Neutrophil count, or, ANC, to be exact. This is the one that makes up about 60% of your entire white blood cell count. So when that one falls off a cliff, the rest of them don’t really matter. A normal count is between 6.4-10.6. Prior to chemo, Andy’s was already on the low end of normal at 7.4, but when we went in for his chemo last week, it was at a dismal 0.4. The minimum threshold needed to administer chemotherapy is 1.0, so we were sent home and told to reschedule the chemo session for the following week. This was disappointing to say the least, but we tried to put a positive spin on it, rationalizing that it was a welcomed extra week “off” from the chemo. This was a lie, of course, but we were both happy to ignore the fact that this was likely a problem we were going to have to face over and over again. Dr. Galsgow totally called it when Andy was in the hospital with his bowel obstruction. He mentioned that his ANC was really really low. At the time, I was just taking note of it, but now, its a thing. Its a whole thing.

Lovely.

So home we went, happy to have a week off, frustrated that all we could do was wait. MORE waiting! Ughhh I hate waiting.

So we waited, and it was actually kind of nice! Things were pretty good that week, Andy felt great! We went out to dinner, Andy took our 4 year old to the movies and to the magic house, we got ice cream. It was just really nice! Everyone kept asking me if my husband was too weak to do things or if he was in some way bedridden because his white blood cell count was so low. No. That’s not how it works. But I can’t blame them, I would have thought the same thing if I were in their shoes and not mine. These little details are not really something anyone knows about, nor should they be. People think that just because he has cancer that he should be “sick” all the time. But, he’s not. He’s just, normal. He is taking it easy, yes, but that is moreso because of his ongoing tummy troubles which have little to do with the chemo whatsoever. –Okay, the chemo is exacerbating the tummy troubles, but the origin of the issue is not the chemo, it’s the right hemicolectomy. So we just carry a lifetime supply of Imodium AD and Lomotil on us at all times, lol It’s really not that big of a deal. It sucks, sure, but this is our new normal.

So we went in on Monday this week for round 2, take 2. Luckily, his white blood cell count had come up to 1.2 which is just above the threshold to allow them to administer the chemo, so he was able to receive treatment, but just barely. This makes me nervous. We really only have one choice if his ridiculous ANC doesn’t start to figure this shit out. Neupogen shots, a series of 3, given over 3 days. These shots stimulate the bone marrow to rapidly make white blood cells — you know what that feels like? The flu. Yep, side effects from the Neupogen shots are bone pain and flu like symptoms. Chills, aches, bone pain, cold sweats, low appetite, drowsiness, lethargy. You know, the fucking FLU. They give these to him on his off week. So here’s how this 2 week cycle would go:

Monday–> Chemo starts, chemo pump hooked up, steroid (feel good) shot
Tuesday–> Chemo pump in full force but otherwise a good day
Wednesday–> Chemo pump disconnected, IV fluids administered, starts to feel awful
Thursday –> In bed all day, feeling awful
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day
Monday–> First Neupogen shot, feels like he has the flu
Tuesday–> Second Neupogen shot, feels like he has the flu
Wednesday–> Third Neupogen shot, feels like he has the flu
Thursday–> Recovering from Neupogen shots, feels like he still has the flu
Friday–> Starting to feel a bit better
Saturday–> Good day
Sunday–> Good day

rinse. repeat. for 20 weeks.

How’s that sound to you? How would you feel if you knew that in the next 6 months, you would only feel good, like a normal human should, for about 40 days? 40 days out of 6 month time frame. 30% of the time you’d feel okay, not even good, just okay, the other 70% would be awful. How would you feel if you knew that? It makes me nauseous that my husband will have to endure that just for the opportunity to be able to receive POISON. Maybe I’m being overly pessimistic here, maybe I’m just trying to deal with the crazy amount of loneliness that all this has thrust upon me! Because while my husband is going through all that, sleeping for days at a time — what am I doing? Life. That’s what. Back to school shopping, lunches for the kids, dealing with tantrums from the teenagers and the pre-schooler, chauffeuring the kids around, working full time, picking up, dropping off, cooking, drinking, spending most evenings watching TV. Alone. Doing all of this alone. Now, don’t get me wrong, I do love some alone time, but this cancer business? Its lonely work. And its not just that, its the fact that even my closest friends cant fill the void. And, to make it worse, there is nothing I can do to make it better. I can’t lay with my husband and cuddle (would you want to be cuddled with when you have the flu?) I can’t give him a pill to help him feel better, I can’t cook him something, I can’t say anything, I can’t do anything, I just have to sit back and watch him suffer. And with this round, he is suffering. His tummy troubles have been extreme this time. Nausea is starting to become an issue as well. The nephropathy has definitely reared its ugly head. For example, Tuesday morning, he went to take the trash bag out of the can in the kitchen, a silly, mundane everyday task, something he’s done every week for years because Tuesday is trash pick-up day, and I could see him struggling to get the bag out. He was trying to grip the bag and kept clinching his fingers up, pulling back, because it was painful to touch anything with his fingertips. So he was using the insides of his fingers and his knuckles to grip the bag, wrap the tie around it and pull it out of the can. I wanted to offer to help, but I also didn’t want to make a big deal out of it, knowing all this had to be weighing on him too. So I didn’t let him know that I saw the struggle. He managed, of course, but it was painful just watching him attempt this simple task. So there’s that, along with the cold sensitivity and bone pain, which he already has. Every time he bites into food, he gets this intense pain in his jaw and he has to chew very slowly. It lessens after the initial bite, but it’s still a struggle. The exhaustion, sure, but that actually has not been that bad this time, but the diarrhea, ughhh, the diarrhea! Obstructive, invasive, sudden, explosive, life altering, embarrassing, dehumanizing, stomach churning, uncontrollable diarrhea. It has worsened, and his stomach is constantly in some state of upset-ness. That’s the worst part. I would be okay with all of this if he wasn’t in pain, but he is, and that makes me feel absolutely awful. And helpless.

On the up side, he did go into work this morning. He is convinced that since he felt good on Friday for his first chemo round, he will always feel good on Fridays. Well, not necessarily, lol But I’m not going to be the one to tell him that! He lasted about a half day, and is at home now in bed. My husbands outlook on all of this amazes me! Its such a change of place for us, me, holding it down here in reality, while my husband is blissfully optimistic about everything! All our lives its been the opposite. Being a realist sucks, I hope it passes with this cancer situation.

So now I’m looking towards his next round of chemo. I am finding it so hard to be optimistic about his ANC numbers. The reality of the situation is he went from 7.4 to 0.4 in round 1. This round, he didn’t start at 7.4, he started at 1.2, so who knows how low his numbers will be when we go back?? This terrifies me! I do not want him to have to go through the Neupogen shots! Our oncologist did say that sometimes the body does find a way to regulate itself, so all hope is not lost. But I feel like with our luck? That is just not what will happen here. But who knows?