I feel off balance. I feel upset.
I don’t know if I should be angry or not but I feel angry. At someone but also myself. Or maybe it’s just grief again.
There is a sort of grittiness that I fall into when I have tasks to do. I had 5 meetings that morning but they gloriously started at 7:30am and not 6am so I allowed myself the luxury of a nice workout. I did a killer 20m arm workout and 30m on the elliptical. I had packed my lunch the night before. I was ready for the day. I was prepared.
But I knew that some of my meetings would be challenging and I was going straight over to Sam’s procedure after. I was feeling a little guilt for not being at home and going with them. There was no reason to feel guilt. I had work. I have a job. J is more than capable of handling things. But maybe it was that I felt I should be there, that I would be missing out. So there is that underlying feeling that I get while telling myself it’s perfectly okay to make the choices I made in favor of work when I was also making family happen. I can’t do it all. I know that. I still want to.
The meetings I had were important. One was a catch-up from a person I needed to get on my side and gently convince them of what I needed done in the future. One was a direct report who really needed advice and direction. Two others were my direct reports where I needed to take the time to review the past year, discuss their achievements, and give them the time and space of my attention. Could I have moved them to another day? Yes, but I moved them around 3x that week already and I condensed my time down so I was leaving at 1145 to give me enough time to still “be” there at the procedure.
I leave. I run into construction. I’m getting texted that they just sat in the waiting room for a straight hour. It’s workable.
The appt was at 2pm. Asked to get there at 1pm. The night before, it moved to 12:30. The morning of, it moved to 11:30 – which meant Sam had to cut off drinking early as she was still doing prep. There is drama and challenges that happen with prep. Makes it worse that it was with a ileostomy. Sam messaged twice and J called the office with her once and they didn’t feel like they had all the right information. We were all talking about it but it still felt like a level of talking “around” it.
I stood arguing in front of the Christmas tree with J the night before. All over an enema.
I am not being understood. I am feeling off balance. I want my partner to be a partner with me and understand my concerns. But I don’t feel like that, I feel unheard and like I have to go do everything by myself.
At the GI appt, I heard the doctor say very clearly that she should do an enema. Even with the ileostomy bag, she had to do the prep “but maybe only half” and an enema would be helpful to get rid of any bile or mucus inside. Was an enema in the instructions? No, it wasn’t. Did they clearly lay out what doing “half” meant? No they didn’t.
Did I hear the doctor say she should have an enema? Yes I did. J maybe heard her or maybe didn’t but didn’t want to say if he did – just that it wasn’t in the instructions. Do I know very well that if you don’t get your insides clear, it’s pretty fucking pointless to do the colonoscopy. Yep. Is there any downside to an enema? No, there is not.
Yet… I told Sam on Sunday during a walk that we should consider it. Did I put it on the list of things we need from the store? No. I said again on Monday that we should do it on Wednesday morning. Am I the one that goes to the store? No. Am I working all the days? Yes.
Do I feel friction? Dissonance? Do I just want to be heard and understood? Do I want to be respected for my opinion having gone through all of these things before? Probably all of that. Why is everything always an argument or being adversaries on the topic? There was no downside of doing an enema but it seemed like a hurdle to get to the point of buying it maybe? I would have to explain how to do it. Get it from the store. Go through the uncomfortableness of going through that process – and I had already done most of the talking about it! I explained to Sam what it was – I made a joke of why some people used it without procedures like this – and the hard part was just wanting to know if we should do it, buying it, and actually doing it. And I just wanted some validation. Or Sam or J to call the doctor and ask. Where they asking the right questions? I don’t know. I prepped them for some of the questions. And can I expect my 19 year old to understand these things?
But I remember standing in front of the Christmas tree, lights twinkling, on January 7th – way past the time when the lights should be off and packed up in the garage. And feeling like a wall was around me. In front of me. Doctors don’t know what’s right for everyone. You have to advocate for yourself. You have to know yourself, your body, what feels right, and trust your gut.
But it’s not my body, and that’s some of where the struggle is. I’m trying to balance being supportive and proactive with respecting Sam’s autonomy. Am I respecting J’s role in this? I want to help, to ensure everything is done right, but I also need to step back and let her make decisions. It’s a delicate dance between caring deeply and allowing her to navigate this on her own terms. But it’s still not all her terms. If I went to the store and did all this work, it would have gotten done. I know what was needed and what I heard. But I’m not agreed with. I’m argued with. And it’s not flat out arguments. It’s debate. It’s making me feel off balance that I’m suggesting something that’s wrong. And I don’t demand that it happens, I’m sort of dancing around it. I’m saying we should do it but I’m not saying “Go to the store and buy it so we have it on hand”.
I want to be kind and think that part of the struggle is with my role as Sam grows up, and the realization that I can’t control everything – nor should I. But this feeling has been present for so long and it’s still a struggle to identify it. But we are still at this place where I’m finding a new balance to respect Sam’s place in all of this and I just have to trust the process and offer guidance and then LET IT GO.
I don’t really want to let it go though. I want to be irritated at someone. So I’m now irritated at the doctor since I’m still not sure if I can be irritated at others in my life.
So. The instructions were not clear or correct.
The scheduling department sucked and made her come an hour and a half early, only to make her sit in the waiting room for an hour, and then sit in the hospital bed for two hours and didn’t start until 2:30.
Sam and J could have advocated more about the instructions but J was stuck on thinking that the prep didn’t matter as much with an ileostomy bag. The scheduling part, while annoying, I understand, because Sam was okay scheduling an afternoon appt. We had a long talk about why morning appts are better and she accepted it and was okay with it. This is just what happens when you are last in line, you get pushed to the end.
They got there at 11:30, I got there at 12:45 and was able to go back and hold her hand during the IV which is great. Someday she will have to do it alone but that wasn’t that day.
The procedure was completed and she was so funny coming out of anesthesia. I think she was over-dramatizing it a bit but she wanted herself videoed and I was happy to let her ham it up.
Her ileostomy bag had tape all over it. J was convinced they put on a new bag. “Why would they put on a new bag?” I wondered. Oh yeah, they had to open it up to put the camera through. But.. what GI department would put on a new BAG? That’s crazy. They don’t know how to put on new bags. But I sort of shrugged.
The nurse tells us later that the doctor will be calling because “she spoke to Sam but Sam was really sleepy”. Wait, what? We were literally sitting in the waiting room and I’ve never had a doctor NOT come and talk to the person who was coming home with the patient. The patient remembers NOTHING. Which Sam sort of remembered her saying she couldn’t get see the bad parts.
The files were not uploaded into MyChart so the nurse let us take a picture of them from her computer. One of the parts said, “Unable to find the TI due to solid stool at the cecum, unable to clear to visualize under colon”.
I was so mad. Why didn’t we do the enema? Why didn’t I just say to my family DO IT. But I guess I would have had to go to the store. Buy it. Oversee the process. And I just had so much rage.
And then the doctor didn’t call. Or she did, and J had his phone calls blocked. Which Sam and I were both – sort of politely – making him fix his phone. It probably wasn’t that polite. He always blocks calls not in his contacts. So maybe she did call, we still aren’t really clear.
Sam was demanding to read it and grabbed my phone. She was so disappointed when she realized. The look on her face and the way her eyes closed was so sad.
The good point was that there were areas of redness and bleeding (but not ulcers and worse things!) there were biopsies made. There was no comment on the endoscopy portion of it? Or what areas they saw through the ostomy bag. So many questions and no call…
Sam went home with J and I went and sat in my car. I thought about who I wanted to talk to in that moment. I had a friend who had been reaching out and it was sort of nice to want to talk to them and not talk about any of this but their phone went to VM. Which was a good thing because…
J called asking for antibacterial or hand sanitizer because her BAG was leaking in the car. Our first bag leak. And ohhhh, the GI team took off her bag and slapped TAPE over it. Wow. They ended up hanging up on me because I heard Sam in the background low-key freaking out and saying to just change it, just do it.
So I grabbed her location – since I track her – and drove to it. I’m glad I did. It was tense but all three of us are pretty solid in emergencies. We sort of smooth things over and just get it done, all while we are singing songs to the radio. It wasn’t pretty though. I had a spare pair of clean underwear in my backpack. I had my long jacket. She wanted ALL of her clothes thrown away so she’s basically sitting in underwear and a jacket on the way home. And once they got home, they did a fresh bag change. Oh, and what happened? It leaked overnight and we didn’t have a waterproof mattress cover on. HOW, I do not know. It’s on G’s and ours. I thought it was on every single bed. That was a lesson. Bunch of stuffed animals, sheets, comforter were all just thrown out.
Anyway. Drama. I sat in the car sort of in shock. My friend had called me back but at that point I was too exhausted. I called Ang because I needed some empathy and laughter and ridiculousness but she went to VM so I called my Mama. I knew she would give me something similar but I was still so angry that I couldn’t get over it. I felt a little better though.
I got off the phone and ordered dinner to pickup because I needed some comfort and my phone lost it’s cell service and I could only laugh.
I was proud of myself for just breathing through it and saying to myself, I’m not in any hurry and I can just sit at the restaurant and wait a little while longer. A few minutes later the service came back – I did try rebooting but that didn’t do it. I’m driving of course, so I’m being careful to not be stupid because if I got into a car accident… Anyway. The wind was crazy that day with the LA fires so I wasn’t sure if something else was happening. And when I thought how so many people had lost their homes already this was just a small blip. So I was proud of myself for that.
I was able to say some of what I wanted to say at dinner. But I just got the excuse that the enema wasn’t in the instructions. But I didn’t say all that I wanted to say. Why can’t I have these discussions? I’m mad at myself too.
But now I get to be mad at the doctor a bit. She still hasn’t called. I asked if Sam and J had called on Thursday – no they didn’t. Okay then. I sat down with Sam on Friday and had her text out a message to them at noon to call me and also ask why the writeup wasn’t in her chart. I know we are waiting for the biopsies which I assume will take until Wednesday. But my biopsies didn’t say specifically Crohn’s Disease (I think?) and we just have to move forward with – this LOOKS like Crohns. So we might have to do the same thing with Sam. Especially because she didn’t REACH the bad part. Gah. I’m getting angry all over again. I wish I knew more if we could have spoken to her already!
And now distance (3 days later) gives everything more perspective. Distance is nice but it doesn’t solve anything. The anger, resignation, grief, and guilt are all there – simmering. And I don’t know what emotion is winning just that I’m frustrated at doctors, disappointed at our communication, and have a love for my family that drives me to care so deeply.
The procedure didn’t go how we wanted it to. The doctor couldn’t reach the burning area. The prep wasn’t enough. But here we are, still moving forward. This is just another chapter in our journey.
I want to be heard. I want to be understood. But I’m learning that sometimes, the most important thing is simply being present.
