You and your family are in our thoughts as well, Nick.
I’ve had kidney stones multiple times. That sucks. THe pee bleeding adds to the stress too. I just hope she is already actually passing them. The bleeding happens because the stones move out of the kidney and into the ureter and cuts up the walls of the ureter. So you will likely pee blood before all the pain of actually passing them begins. Sorry. Keep her moving as much as possible. Even do exercises like jump rope, jumping jacks, jogging. I know that’s asking a lot. Sorry she’s going through this on top of everything else. But , hey. Just like Meade would probably say…
…God does not give us more than we can handle.
My thoughts but not prayers are with you all. If you make it to Texas, like we discussed before, I will come see you.
That is a lot to handle. I wish you both strength.
Stay strong, Nick.
Damn man. My thoughts with you all as well.
Your wife is tough. Thanks for the update. Love to your family.
fuck dude. not sure what comfort it is, but i hope you know we are here for you, love you, and support you. this is just shitty. wishing you all the best.
Thanks! It’s nice to get to vent a bit here. It’s hard to do that in real life. I’ve been prescribed some meds to take the edge off. I have whiskey when I don’t feel like taking that. Oh and I’m watching Pen15… which is great. It reminds me of one of the funniest shows ever, Strangers with Candy
monkey, you are a good man. i just wanted to say it.
you have free permission to vent away, for the record.
thank god for the meds, and don’t ever feel guilty for that OR having a sip or two of whiskey when you need it… you are under enormous stress because everyone expects YOU to shoulder everything. you are secretly carrying everything. do what you gotta do, when you can. you are one helluva husband and father.
Ugh. I think I’m going to have to commit murder just to convince people that I’m not.
Again. Murder again.
murder by death?
Not even sure where to start with this one…
Sunday we were told to discontinue the chemo for the time being due to swelling. The prior Thursday she had an echo cardiogram to check for congestive heart failure. Everything came back fine…we just needed a break from the chemo. She was given Lasix for the swelling. It did its job.
Monday I come home and I noticed our trash bin was out by the curb. This was odd because our trash is picked up on Wednesdays. I walk in and my mother-in-law pulls me aside. She tells me it hadn’t been a good day. My wife was really slow to respond, foggy, and breathing heavily. Like almost gasping. She was also really tired, which isn’t that odd now days. At dinner she was just kind of out to lunch. Really slow at comprehending things. I put the kids to bed as she sleeps. When I go to check on her breathing was ridiculously labored. I wake her up and ask her if we need to go to the ER. She looks at me as if she has no idea who I am. She would take 30 seconds to respond. She was adamant that we didn’t need to go in. I let her sleep some more. She woke up and remembered she needed to text someone back. She couldn’t even hold her phone. That was enough for me. I call her parents and they come over to watch the kids.
I rush my wife to the ER. At this point she can talk, but everything is a chore. The ER takes her straight back. They run CT scans of her stomach, chest, and head. The tests reveal that she has trace amounts of fluid around her tumor and in her lungs. Nothing too bad. The fogginess is still there the next morning. Our oncologist visits us at 6 am that morning. He believes all of this is symptom of the high dosage of chemo we have been on. There is a thing called “Chemo Brain” and her symtoms were consitent with that. He tells us to give it a few days. I’m good with this because her breathing was much better. The next day she wakes me up and tells me happy birthday. My birthday is in March. Her nights are spent getting out of bed, walking around the foot of the bed and then getting in the other side. This happens no less than 50 times. We spend another day in the hospital and then go home. Fogginess and all.
We are home. Various family members have been over and seen her condition. Her fogginess had only continued to increase. I reassure them by telling them what the oncologist said. Then Thursday comes around. Her condition is really bad. She stares at nothing for literally 30 minutes at a time. It didn’t even seem like she could blink. The Lasix had made her mouth so dry that her lips were bleeding. The blood and skin covers her teeth. Her mouth is constantly open, as if she can’t even close it. She is nearly unresponsive when being spoken to. I still have faith in what our oncologist had told us and was willing to give it a few more days. She’s scaring the kids. My stepson asked for a Kleenex and like two minutes later she handed him a Lego sword. My son comes home from school and shows her the proofs for his school pictures. She is staring into space and can’t even look at what he is showing him. He runs upstairs in tears. She is staring through my daughter. She starts crying. I cannot stress how scary she looked. I have said she had that “hospice stare.” My wife is tiny, but her weight was like 105 lbs. She looks like the crypt keeper.
I take my son to hockey practice. My brother and sister-in-law stay with my family. My chiropractor neighbor texts me and tells me has some accupuncture techniques that he has used on people with Chemo Brain before. He comes over and is startled. He tells my brother that something much larger is at play here. My wife can’t even function. My neighbor texts me and tells me to call him. I tell him I can’t because I am with my kiddo in the car. He then starts texting me that I need to take her in immediately. He talked to one of my oncologist’s partners and he said she needs to be seen immediately. He didn’t think she had much time left.
I get home and she is locked in a horror movie pose. Think: Closet girl in The Ring. Both arms are kind of locked in a scarecrow-like position. Her head is uncomfortably tilted to the side. She doesn’t even acknowledge that I am there. She’s looking through everything. I don’t even know if she is blinking. I tell her we are going to the hospital. My stepson is so upset he throws up. I load her up in the car and have to put her seat belt on her. I pull out of my drive way fully believing that I wouldn’t be bringing her home ever again. My brother follows me. I’m asking her if she knows who I am. About a minute later she says, “you’re Nick.” I’m crying as hard as I ever have.
Again, they rush her back at the ER. The same people that checked us in on Monday were checking us this time. They were horrified. One has tears in her eyes. I contact a doctor friend of ours. He tells me to request a full metabolic panel of blood work to be done. They do that, another CT scan, a spinal tap and a chest X-ray. Her breathing is ok this time. She cannot answer any questions they ask her. They asked her what year it is. She says “2011.” They ask her the month. She says “February.” At this point our oncologist is involved. He tells the ER doctor that her condition is so dire that this could “go south” really quickly. A friend of hers does the CT scan. She is in tears. My wife looks like she’s about to die.
The CT scan comes back fine. The spinal fluid was clear. The blood work was more dire. Normal ammonia levels in the blood are between 15-45. My wife’s is 106. He tells me that those levels are consitent with people with liver cancer. We know she doesn’t have that, we have no idea what is causing the elevated levels. The doctor tells me that she’s going to be given a liquid medicine that should allow her to pass the ammonia. Basically she would shit out the ammonia. She is given the medicine and we are given a room three doors down from where we were the previous day.
She is considered a “fall risk.” Any time she gets up is going to have to be with a nurse. A bed alarm is turned on. Keep in mind, she’s not acknowledging anything. She is still locked. She’s hooked up to bags of fluid and antibiotics. I’m a wreck. I’m so fucking grateful my brother\best friend is there. I’m trying so hard not to lose it.
Then the first BM comes. She’s assisted by the nurses. Within 30 minutes a bit of the fog seems to clear. Not much, but she can answer me. I try to convince her to go to bed. She has other ideas. Just like the previous trip to the ER, she is constantly trying to get up. Unlike the previous time, she her chemo port is hooked up to the meds. I am constantly telling her she cannot get up. I can tell the fog is lifting because she tells me that its bullshit that she cannot get up on her own. She tries to get up countless times. My brother and I have to constantly stop her. I finally let her get up a few times just so the alarm is sounded. I figured she might get more sick of the alarm than me. I was right. This continues on until 4:30 in the morning. Finally she passes out. I’m in the recliner next to her. My brother is on the couch. I cry until I pass out at 5:45. Sadly, the medicine only made her shit once so far. There were many false alarms though.
Our oncologist comes in a little before 7. She’s awake, I am not. He’s apologetic about it going this far. In his defense, high ammonia levels aren’t consistent with her condition or her drugs. My wife cannot site the day, month, year or president. She absolutely nails my birthday, though. I cry. There’s still some brain function. She’s better than the night before, but the oncologist is really taken aback by her condition. We do an MRI that comes back perfectly fine.
She gives one of her coworkers shit and calls another one fatty (she’s pregnant.) There’s glimpses of my wife of old. We do an EEG and an ultrasound of her liver. They come back mostly fine. My sister, who saw her the day we went back to the hospital is so shocked that she tells my sister-in-law that she needs to see how far she has come. She’s still not all there, but the stares and silence are gone. She has another dose of the poop juice (Lactulose). This stuff is so thick that I tried to put a straw in it, but it wouldn’t pass through the straw. It’s some nasty stuff. She throws it up minutes after taking it. Her next BM isn’t until an hour before the next dose. Miraculously, you could see the fog lift within an hour of shitting. Like she would go to the bathroom and you could tell that it was working. It was insane.
She’s still super anxious. But gone are the "I need to get up"s and "can we just walk"s. She just wants to sleep. She’s really upset that she can’t. That night she went to the bathroom 10 times. 3-4 are to be expected. She’s given half a Xanax at 11. I pass out around 3. I’m so exhausted.
Saturday I wake up and she’s much closer to being the person I know. She tells me about the night. She’s still super cloudy, but she’s much better. They run another test on her ammonia levels. She’s now at 86. Still really high, but the poop juice is obviously working. The doctor comes in and explains what he thinks is going on. I’m not 100% sure what exactly it all means, I am working on a few hours of sleep over the past few days at this point. Evidently, due to the huge tumor, the portal vein of her liver is really enlarged. There’s an increased amount of blood circulating through there. Due to that, her liver is having trouble with proteins. When the liver has trouble breaking down protein, it produces ammonia. We jokingly ask when we can go home. The doctor asks us “when do you want to go home?” My wife says “today.” He thinks that can happen. He puts her on a really strict low protein diet. She’s not to consume over 30g a day until after surgery. I forgot to mention that we were supposed to meet with the surgeon in Indianapolis on Wednesday but couldn’t due to being hospitalized. Our new appointment is the 17th. Basically she’s just supposed to consume as many calories as possible with as few proteins as we can. The dietician stresses smothering everything in dressing, butter and mayo. She needs to add some fat before she can have surgery.
We are home as of yesterday afternoon. I’m exhausted. We have been told that we are very lucky. She was close to being at a point of no return. She’s still foggy. She gets frustrated by little tasks and her phone. She’s also very tired. She’s not really staring as much and her mouth is closing again. She is slowly coming to terms with how dire her condition was. She doesn’t remember most of this past week. She doesn’t fully grasp how badly she scared the kids and our families. I hope she never fully understands.
Sorry for the long read. It’s been an awful week for a genuinely great person. It’s unfair and it hurts. This as close to PTSD as I will ever experience. I find myself constantly breaking down when I think about Thursday night. I’ve never been more scared.
The plan is to start on the chemo, at half the dosage, this week.
Holy shit, that sounds awful. Beyond awful.
I can’t imagine what you’re going through, and with kids involved too. Thankfully you have a lot of family around who can help you and your kids. I hope things get better for all of you. You’re doing a great job. ️
This is so hard for me to even read… Can’t imagine how difficult it must be for you, her and the kids.
We love you all.
crying in my bedroom. stopped putting on my boots so i could finish reading it.
i just can’t even imagine. to think i was whining the other day about packing up boxes and hurting my back. perspective. you got this nick. you’re allowed all you want to in terms of tears but you don’t need me to tell you to keep on keepin on cause that’s what is required for your sake, your wife’s and your children.
thank you for sharing w/ us. much love. much respect.
Also, Jesus Nathan Christ! You both have been put through it! Holy fuck I am so sorry for the both of you and your extended family. The upshot is that it was able to be turned around for the better. I’m sure in the days to come she will be feeling better. The body is such a strange machine.
I read your story and could feel your wife’s fighting spirit throughout the ordeal. I am moved by your strength and hope that I might be blessed with half of it if I were to face such a situation.
You are surrounded by family and loved ones who will help you both keep your heads above water until the shore is in sight.