LA Surgery #1

 

LA is a crazy place, much different from home. Luckily, Derek and I had his friend here to help us out and show us the ropes. Checking in to Currie Hall was easy. My days before surgery were good. I was in good spirits and shared my time with Derek.

 

The morning of surgery I woke up very early because I’m still on Wisconsin time. I showered and grabbed the three things they said I could bring: ID, phone, phone charger. Nothing else. Derek and I walked the couple blocks over to the hospital and checked in.

 

We registered and were escorted to the elevators where Derek had to leave me. We hugged, kissed, and I got into the elevator with the tech, Justin. Derek said, “everything is going to be ok.” Then the doors closed and up we went to the fourth floor.

 

Off the elevator was a large cold room divided by curtains and beds. Justin walked me over to my bed where I met Kaylee, my pre-op nurse. She asked how I was doing and I immediately started crying and said, “I was doing good.”

 

She comforted me. Then made small talk about where I’m from and it turns out her mother grew up in Red Wing, MN which is maybe a five-minute drive from where I live. It’s where I shop, work, and basically do everything. I thought for sure this was a sign that I was on the right path.

 

She gave me a gown, grippy, socks, and wipes to wipe down my body before surgery. I had already done this once before I left for the hospital so they were being very thorough.

 

Next the anesthesia team came to talk to me. They wanted me to do an epidural to which I refused. The tech seemed annoyed and kept saying how I’d need it and he does this every day so there’s no reason to worry. I refused because my last epidural gave me “spinal headaches” which would make me lose my vision, give me extreme headaches, and I’d vomit any time I sat up. I wasn’t about to experience that again. I kept kind of going round and round with that tech until he finally backed off. Kaylee walked over and said he shouldn’t be so pushy and needed to respect my wishes.

 

It was time for me to go back. They wheeled me back to the OR and put a mask on my face. They told me to breathe deep and it might taste bitter and hot. It definitely did but after about three deep breaths it was lights out.

 

The next 12ish hours they performed surgery but only on the front part. I woke up in ICU to a tech shouting “Hi Toni!” My eyes shot open and there were people all around me. I immediately tried to communicate with them.

 

My butt didn’t hurt so I was trying to ask them if there was an incision on my butt. But my throat was so swollen and I had an oxygen mask on so it came out as incoherent babble to them. “What? What are you saying?” They’d ask. Over and over again I ask if there was an incision on my backside. I tried to point but my arm was braced and I couldn’t move it right.

 

The main nurse in charge barely spoke a lick of English to being with then throw in my swollen voice. I started to cry because my thoughts were coherent but my ability to communicate them was not.

 

I started asking for a nasal cannula versus the mask but again they couldn’t understand me. I grabbed the mask and said NASAL CANNULA. I said it slow and as pronounced as I could but it sounded like I was talking with a mouthful of marshmallows. Eventually, they understood that part and pulled off the mask. I had some sort of tube in my left nostril the nurse grabbed and pulled it out but it extended down my nose and into my throat. I coughed as she pulled it out. Then she gave me a regular nasal cannula for oxygen.

 

Now that they had removed the mask and nose tube I was able to speak a bit better. I kept asking about a backside incision but my little Asian non-English speaking nurse just said “ohhh, ya ya.” Basically to shut me up. I started to cry and asked what happened. Why don’t I have the back incision? After lots of frustration one nurse said they would grab a surgical tech to answer some questions.

 

He wasn’t part of my surgical team but he came and read the surgical notes and said looks like they got it and there’s no evidence of disease. I told him how did they get it when I don’t have a back incision. He told me they can still reach that area through the front so not to worry. In the end, he was wrong and had no idea what he was talking about.

 

You see, I had one extra “something “ they removed besides my tumor that was growing into my abdominal wall. That was the part that said no evidence of disease.

 

After everyone left the room I laid there staring at the ceiling wondering wtf happened in there. My nurses were both barely able to speak English but I said my husband would know what’s going on, call him. After a bit of communication barrier, they understood I wanted to call Derek. They brought me a phone where they called him.

 

He explained that surgery was much harder than anticipated. My tumor wasn’t just pushing things out of the way anymore it has adhered to all the nearby structures; bladder, ureter, uterus, abdominal wall, and aortic branch. They stopped after about 12 hours because that’s how long the front portion took and they had anticipated 12 hours for the entire surgery. They were also worried that they may have gone too close to my nerves and damaged me and if that was the case why subject me to a second large incision. Now everything is hanging in the balance of a pathology test whether or not we go forward as planned. Luckily, when I woke up the first thing I did when coming to was wiggle my toes. So far everything is working.

 

After I spoke to Derek I spent the night in ICU and let me tell you how awful it was. My nurses had zero bedside manner. They didn’t really talk to me and we’re not gentle in anyways. When they tried to change out the pump boxes, first they were trying to attach the wrong boxes to the wrong pumps over and over. But she’d yank and pull constantly bumping and sometimes bracing her tiny frame against my bed causing my bed to jolt and my incisions hurt so bad each time.

 

When they’d lift my belly band to check my incisions they’d do it fast and careless even snapping it against me (just letting it go so it snapped back against my incision) a few times with an “oops sorry” in broken English. Any question I asked was met with a groan and a yes or no, nothing more.

 

Anytime I called for help through this speaker remote device, the desk person sounded constantly annoyed. “How can I help you?” But add the tone of someone sick to death of their job. One time I called to have blankets pulled off because I had a huge layer in me and wasn’t able to move much with a braced right arm that had an arterial line, IV in the elbow, IV in the left wrist, the central line to my heart in my neck, then the obvious incision, and separate drainage opening on my side, and they never came. I waited and waited, sweating to death so after an hour I used my legs to kick off all the blankets that were weighing me down. Once I got them to the side I grabbed one of the roughly 8 blankets I had in and pulled it up over me with my left arm and left leg.

 

I was so upset with my nurses. I wanted to scream at them for rudeness or lack of compassion in such a delicate area. So many times I cried in anger but instead I thought I’ll try to win them over with kindness instead. I was determined to get to them to see me as a person, not just a job. So finally when she came in again to inject meds into my IV I decided to ask about her as a person. “You’ve worked here long? Seems like a very hard job.” She responded with a yes, yes very hard. “What’s your favorite part of the job?” This is where she lit up. “Oh for me it’s the patients. Seeing them get better and get out of here. Nice to know I helped with that.” Then I shared my medical experience either to which she was surprised and we talked about further things, more personal things.

 

From then on she was much kinder to me. Still not gentle in her manner but would be sweet and kind when doing her duties.

 

I tried the same approach with the other nurse which seemed the most work just not quite as well as the first nurse. Still, I did get them to actually talk to me and have some sort of bedside manner with me which was good.

 

Overall ICU was not what I expected and I would not want to be there if I really needed it. Definitely had to work hard to get some kindness.

 

The next day I was pushy about going to a regular room. Early afternoon that day I was finally transferred to a normal room. My first night nurses were kind of the same, seemingly irritated a lot. But I kept up my approach and a lot of it here is due to COVID. They have so many people not working due to it so they are very short on staff and working long hours. After my first night here the nurses got better and better.

 

It’s been so hard here. The assisting doctor to doctor Tseng has spoken with me several times and has explained everything to me. He’s glad they debulked the tumor now because it was invading other organs. He said a hemipelvectomy seems pointless because the disease now has touched many organs. So if I ever did that it doesn’t mean the disease would be gone. Now we wait for pathology to see if most of what they got us dead or not to see how we proceed, could be that second surgery. Could be more treatments to stabilize the tumor.

 

I spent most of New Year’s Eve crying. I’m so lonely here and scared of my future. My optimism has started to dwindle. I’m trying to remind myself of all the signs I’m being given and the signs of comfort. But there’s always that nagging in my head of the what if’s. So much hangs in the balance of that test.

 

I’m so scared I’m ruining lives around me because it sounds like my life is going to change so much. Doctor Tseng recommends me doing trials at major sarcoma centers. All of which are in different states than mine. My family and friends' lives don’t need to be disrupted because of me. You know I think about my life and if we lived in olden times I would have died so many times by now… pre-eclampsia with Connor, appendicitis, now cancer. Back in the day it just happened with no medical intervention and I’d have died. I wonder if that’s a sign in itself. Maybe my time on earth isn’t meant to be long.

 

I feel like soon I’m going to have to ask myself the hard questions. Quality vs quantity of life. My cancer as of now gives me no symptoms. But the treatments do. I’m not really living during them anyway. Do I want to live in pain and sickness from potential treatments just to have more time? Though that time is likely to be spent in bed? Or I skip the treatments, live like normal, and let the cancer invade me further? But at least I’ll feel well and could do the things I want but lose the time? These are not easy questions.

 

 I want to see Celia go to prom, see Connor have his first love, see my children hit all their personal milestones in life. I want to see them become parents and hold my grandbabies. I want to do all the things normal people get to do in life. I want to grow old with Derek. Be that silly old couple people think are too cute when we bicker about nonsense.

 

Being alone here in this room has greatly affected my mental health. Isolation is not good when you don’t get good news about your life. Derek walked to the top of the parking garage outside my window so I could see him. My window is tinted so he couldn’t see me but I was so happy to see him. Made my heart so happy to see his face.

 

Anyways, I’ve been up walking, they removed my stent. I finally gave myself a bit of a bed bath today, even emptied my catheter for the nurse. He laughed and said, “you know how?” I said yes and that I was a nursing assistant for about ten years. He and I talked about covid. The chaos he’s seen, we talked about his visit with family in Michigan and said how he couldn’t live in such a calm place. It’s beautiful and peaceful he said but he’s just used to the crazy hustle now of Los Angeles. We went in-depth about the differences. He said when he visited his aunt in Michigan he mowed the lawn on a zero-turn and hated it. He laughed about how much he disliked it. I was so grateful for his conversation with me. No one has really chatted with me.

 

I think the next steps are me getting my catheter removed, hopefully, today. Then as long as pass gas and have a bowel movement I can leave the actual hospital part. The problem is I have no desire to eat anything.  Then we stay at the apartment waiting for the next steps. My goal is to get out of this place as soon as possible. I want to spend every second with my family. I want to hold and cuddle my daughter more than anything else right now. I want to hear my son tell me a crazy story or a dumb joke. I want to hug and kiss my husband.

 

I wish life wasn’t so hard. I feel like my entire life has been a fight. I have to wonder why? Did I do something wrong? Was I an awful person in another life so I’m paying for it now? Maybe it’s selfish to think but why can’t I just get a break? Cut me a little slack so I can do great things. I wasted so much time and now I can’t get that time back. I wish everyone I knew could see through my eyes to see what is really important and change their ways before their time is up, too. Please if you’re reading this, do it. Prioritize your life right. And love, love, love. Love everyone. And make it known that you love them. Never be scared to do the things you want. Set high goals and reach them. Failure is not bad, try again until you succeed.

 

Anyways, I love you all. Don’t take anything or anyone for granted. Really LIVE your life. Don’t get stuck in the grind of going to work coming home and watching tv. There are people in your life you could visit or spend time with. Pick up the phone and call those you’re missing. Do it all. Please.