Tag: neupogen

An Oncologist and a Patient’s Wife Walk Into a Bar…

I think I’ve heard that one before. It was funnier when it wasn’t actually my life, lol But legit, I ran into Andy’s oncologist in a bar last weekend! No, I didn’t say anything. If you recall, Andy and I don’t really love her, so no, I didn’t say anything when I saw her. But I’m 100% certain it was her, lol I wish that story had a funnier ending.

As I predicted, we went in for Andy’s chemo treatment #3 on Monday and his absolute Neutrophil count was again too low. It was 0.8 this time, we need it to be at least 1.0 to be eligible for chemo. I hate it when I’m right about these things. –No I dont. I actually love that I can predict and anticipate what is happening here in reality while Andy frolics in lala land. In some weird way, it feels like some sort of credibility or something. Cancer street cred.

Yea, I’m cool.

Anyway, Andy received the Neupogen shots. He had his first shot on Monday, second on Tues and he finished off the series today. He crashed Monday night, Tuesday he attempted to cut the lawn after he came home from work, but came in half way through saying he was exhausted. (Yea, dummy. Why did you think you could cut the lawn? Just another project started by my sick husband who thinks he has the energy to do things as normal, but fails miserably at follow through on just about everything he begins these days. Add finishing the lawn to the top of the list after cleaning out the garage, power washing the driveway, replacing our front door bell, mulching the landscaping and staining the deck. … Guess who’s left to complete/clean up/finish all these projects he begins and is too exhausted to end? Yep, me. Guess how I feel about that?) So today he came home from work and went straight to bed. Lovely. Another night alone. Just me and my glass of wine! At least the dog is content with my husband being in bed 75% of the time. Note the bruise on the backside of his arm. That’s from the Neupogen shot. Since he has no white blood cells, he bruises really easily and anything he brushes up against turns into a bruise immediately. So a needle poked into his arm? It’s a bruise. It’s awful, but it’s reality.

I should stop complaining because really, things have been okay recently! We are happy to have another week off of chemo, tho I was concerned about these Neupogen shots, just another unknown, but they haven’t been that bad. The side effects are just more exhaustion than physical symptoms, which I will take 100 times over seeing my husband in pain. I cannot take it when he’s in pain! But now that we are through the shots, I feel like I can breathe a little bit. We have our 4 year olds 5th birthday this weekend, (side note, I guess I’ll have to stop calling him “the 4 year old,” lol) so I’ve been deep in party planning mode for about a week and a half. I LOVE planning parties! I feel that small details make all the difference and I try my hardest to make birthdays special for the kids! Even the awful teenagers, lol Our almost 5 year old (see!!??) is very much into Mickey Mouse right now, so I am planning a Mickey party!

I’ve been trying really hard to keep busy. I finished a window casing project that was on my really-want-to-do list for about 3 years, and then I had a wall stenciled to top it off! I mean, it looks AMAZING! And I look at it everyday from my office chair, so I really get the opportunity to appreciate all the hard work I put in! Every time I glance that way, I get this warm smiley feeling. Since I work from home, I see a lot of my house, so small changes in the mundane scenery make a HUGE impact on my entire sense of well-being! Might be bizarre to hear, but, my dining room makes me SO happy!

Speaking of work, I’ve been included in our bi-weekly leadership meeting. Possibly by accident or with the intention of it being temporary, connected to the P1 initiative, but my invite hasn’t been revoked, so I’m happy to get some face time with the big dogs! I work with some SMART people. Like, literal NASA rocket scientists, and I am humbled to be included in that mix. I’m not of the school smarts background, but what I do well, is people. I’d put my people skills up against any of our top AE’s or PM’s in my company. I have a way of connecting with people, regardless of their background, and finding a common link to launch a relationship off of. I can also fake the talk, not really “fake,” but I don’t actually have a full technical understanding of a lot of the things my company delivers, but I know the jargon, and I know when and how to apply that to a conversation. And that, my friends, is what makes me a good people person! Regardless, I’m including myself in the leadership team and I am going to seize every opportunity I can to inject myself into the conversations and projects that come up. Until I am told to leave, I will stay and prosper! We’ll see how long this lasts, lol

I’ve also been keeping up with my macros and my exercising. This really keeps me grounded and helps my anxiety tremendously. I wish there was some way I could convince Andy that exercise and eating healthy are important for him, along with taking his vitamins … which, he has recently been refusing to do. Its infuriating beyond explanation, but I’ll spare you the 2 hour conversation that I’ve subjected my best friends to about vitamins, and leave it at this; I will not stop trying. I can’t. I care too much, I love him too much to just throw my hands up and say Fine. You win. Nope. Because doing that would basically be asking me to go against everything that I am. So nope. That’s not who I am. That’s not who I want to be. That is not what I will become. I will stay the course. I will fight against all the odds for my husband. I will spare no expense so he can be well. I will exhaust all options. I will continuing researching relentlessly to explore ways to minimize the effects of the chemo or to find other treatment options if need be. I will not rest until this whole situation is just a bad memory in a series of amazing life experiences that we look back on when we are 85 years old, sitting in our rocking chairs, on our front porch, watching the grand kids play.

That is our future.

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?