Another Hospital Visit and the Capacity to Love

My mom started chemo last Monday, May 14. On May 22, my mom went to get her blood tested and visit the oncologist. She had a fever and her white blood cell count had dropped to .4. Normal is 10. She wasn't even at 1. She developed a neutropenic fever and we had to have her admitted to the ER. She hated the hospital the first time she was admitted and dreaded the thought of going back there. After all, she was only released a little more than a week before. When we arrived, they placed her in isolation since she had a very weak immune system. It was much more peaceful in the ER this time since she had her own room. No loud annoying constant beeping sounds...just lots and lots of waiting and waiting. We got to the ER at 11:30am and they didn't admit her upstairs until it was close to midnight.

I hate cancer more than anything and I feel a tremendous amount of indescribable sadness for what my mom's going through and others in this situation... cancer is simply not fair. However, while at the hospital ER, I also couldn't help thinking about those that have no one to depend on. I was gone for 2 hours and during that time, my mom soiled herself. She couldn't get to the bathroom in time. She told no one but when I got back, told me and I got a wet paper towel and helped clean her and change into clean clothes. There were patients in other beds connected to their machines beeping incessantly and no one to notify a nurse to turn it off. There were patients with no visitors for hours on end. A nurse came by and asked if she needed someone to wash her and my mom politely decline, knowing that her daughter would be able to do it. I never imagined that at 27, I'd be taking care of my mom like this..but all I can think about is I just want her feel better and know how much she is loved. My mom always says that people use the word "love" too indiscriminately (especially while watching The Voice, Biggest Loser, and other competitive reality shows- seriously they tell them they love the person way too much, just when they're about to vote them off), when it's really the actions that show someone how much you really care. One of the members in my online support group said it well when she talked about caregiving for her husband...the "capacity to love" really struck a cord with me.

Lana, I never realized my capacity to love my sweetheart until he got sick. What normally would have grossed me out, didn't phase me. All I wanted was for him to get better, stop stuffering, be happy, come home, so that our life could return to "normal." Your mother is so blessed to have you. You are a wonderful daughter. I'm praying for you and your mother. Hugs.

Mom chilling reading Chinese newspaper

It is now Memorial Day and while her white blood cell count is up to 3.7, her platelets and red blood cell count are still a bit low so she will not be able to go home today. Hopefully tomorrow. She now looks and feels better. She had a very sore throat and it hurt just to hiccup/ burp or eat food, so she ate very little. Her appetite is much better and we walk around the floor twice a day to get some exercise. Yesterday, my brother came home and bought some goodies from Chinatown, among other things: Chinese food and Chinese newspaper. The Chinese newspaper will keep her preoccupied for the rest of the day. She's a beast when it comes to reading lol.

One of my mom's neighbor's needs to be guarded 24/7 with two officers sitting on both sides of the door. Right now, one officer is inside, so this one needs to be extra attentive...you know, in case this maybe convicted felon who has cancer makes a run for it or jumps out the fifth story window. Who knows, but it's fun to make up stories about why he's there...helps pass the time.

How do YOU feel?

It's nice when people ask me how I'm doing, but honestly, I don't have an honest reply. I'm hanging in there. I'm doing ok. I'm doing the best that I can to stay afloat. I'm trying to make my mom eat. I'm trying to coax her to swallow food before it gets cold. I'm praying for her pain to go away. I'm begging a higher power for a miracle, for her to defy the odds. I'm thinking about how empty I would feel without her here. I'm unable to focus on work. I'm a mess at times, but I'm able to find good moments to focus on. I'm exhausted, but I'm trudging on...and so is my mom.

Discharge(d) hopefully

Doctor did his rounds and said that my mom can go home if everything's stable. She will get blood checked and then if it's in the 10s...we can go home. If it's lower, she'll need to get some blood and then hopefully still go home. I'm waiting to get called for my mom's chemo treatment. Hoping it's Monday.
 Doctor wants to start with irinotecan and then add carboplatin rather than giving both at the start because she's afraid it'll wipe her blood counts. Hoping the drugs will work its magic.

Lot's of hoping and lot's of praying.

"Just Cancer"

My mom is not they typical patient. She does not have cancer in her family history. In fact, longevity runs in her blood.

But I know she's not the only person whose cancer diagnosis came as a shock. It's funny though, how people find it weird that she doesn't have any other health issues. And I also think it's very dangerous and misleading...the idea that if you are healthy, you are entirely safe from getting diagnosed.

Nurse: Do you smoke?
Mom: No
Nurse: Drink?
Mom: No
Nurse: Diabetes?
Mom: No
Nurse: Are you on any other medication other than chemo?
Mom: No

Nurse: So just the cancer, nothing else?
Mom: Yea

Isn't cancer enough?

A lot to take in.

Thursday: My mom's arm became swollen and we went to have it looked at. It was suggested that we go to the ER to get it checked out because it could be a blood clot. Never ever go to Robert Wood if you have an emergency. It's so crowded that even chairs for guests to sit by the patient's bed are hard to come by. I had one, but the minute I sat on the bed with my mom, it was taken. There's people just laying on the side of the hallway because they don't have enough spots where it's sectioned off by a curtain. We got here at 3:30pm and didn't get to our room until after 1am.

Friday: We had no idea she'd have to get admitted so I left hospital at 2am to get my things to bring back for the sleep over. She's on continuous Heparin. They needed to do a ct scan of the neck yesterday in addition to ultrasound, but instead did the ct of the chest. So today, she's going to get scanned again, correctly this time. Dr. thinks that the tumor is pushing against the vein causing the blood clots in all of her left arm and neck. Dr will talk to radiation oncologists to see if tumor should be radiated because chemo might not work as quickly. At the same time, she also needs to find out the success rate of radiating to reduce swelling. She's also low in hemoglobin count so she's getting blood transfusion.

Saturday:Tests confirmed blood in stool. She had an endoscopy/ EKG done and the gastroenterologist said there was no active bleeding of stomach tumor at the time. It's currently 8cm, meaning it doubled since last time. Mom needs to go on blood thinners for her arm but because there was blood in the stool, she doesn't want to start her on blood thinners yet (since it can cause her to bleed out). Dr needs to think it through about the next steps whether to also radiate stomach tumor or do an angiogram. An angiogram basically would require my mom to go on heparin and then cause the tumor in the stomach to bleed. When the see where it bleeds, they'll then close the blood source...something like that.

I left at night for a wedding of a close family friend and got back to the hospital at 2am. 

Sunday: Saw Dr this morning. She said that hopefully radiating the tumor in the neck will shrink the tumor and reduce the swelling in the arm. She's hoping chemo will work, though even if it does, it wouldn't work as fast as radiation. Radiation is suppose to have no side effects since it's only 3 treatments: Monday thru Wednesday.She said she still has to think it over and consult with other doctors regarding the tumor in the stomach.

This is a lot. But I have to be strong for my mom. After all, she's the one going through all this. The good news is that her hemoglobin count has increased to 9.7 from 7. I'm doing my best playing "nurse." Today I brought a wash cloth and bucket and wiped down her body since she hasn't been able to take a shower. I took her for a walk since she needs to get up and moving. She took about a 25 minute walk around and around the small reception area. I was telling her funny stories from Ella's wedding. She's eaten breakfast and lunch. Dinner has arrived and she's napping peacefully.

That's the latest update. I truly appreciate all the support and actions of kindness from my friends and loved ones who've reached out. This is the biggest hurdle we have been through since diagnosis and we're trying to swim back up.

Picking Yourself Back Up

...piece by piece. Found out chemo drug didn't work, so I'm feeling pretty devastated right now. Hoping to start new chemo next week. She's going back to the drug she originally responded well to when she first was diagnosed,and perhaps adding another one.