Monday, April 30, 2012

Till tomorrow.

I spend a lot of time with my mom in bed. I crawl next to her and sometimes I just use her as a heat source. Other times I silently pray. Or silently cry. Or do both. My mom gets hungry but she has no appetite. I told her she's not allowed to get thinner than me. The area near the front of the left side of the neck is swollen and it hurts to move her head to the other side. I just pray it's a side affect from the chemo.

I'll call tomorrow morning to find out from the doctor about the scan results and let her know about the swelling.

As always, please keep her in your thoughts. Feeling very low at the moment. Thanks.


Friday was the pet-scan, and now this week, we're in waiting mode. I'm on edge.

Please let us have good news.

Sunday, April 29, 2012

Universal Truth: In life, there is suffering

Me: i'm so tired ...
Friend: Tired of what
Me: i just feel exhausted ...working 2 jobs, taking care of my mom.
Friend: Yea, I understand. You have to be very strong to do it, and you are
Me: i just wish life wasn't so unfair.
Friend: Its not, theres always a reason for everything. Its tough
Me: or maybe there isn't a reason and we just try to rationalize and convince ourselves there is to make sense of things
Friend: Could be but life is life and it is full of challenge for everyone
Me: yes but some people have it much easier and I wish my family was one of them.
Friend: Everyone wishes that. I dont think thats true btw. it might look easier in the moment but life isn't easy for anyone over a period of time
Me: So everyone's miserable the longer you live, or eventually in life?
Friend: Eventually because thats an emotion and state of being we all experience to learn about life. If it was easy then it wouldn't be real
Me: why do u have to be so philosophical?
Friend: Thats how I see things
Me: I know. maybe u should be a monk.
Friend: Lol I don't need a label to think like this

Friday, April 27, 2012

PET scan day = Scanxiety

For people with advanced disease or in continuous treatment, life revolves around scans. Every 3 months - scans. You learn whether the treatment's working, whether you need to get back on treatment, and the overall state of the disease. In other words, you learn whether you have another 3 months of relative peace until the next scan, or your heart plummets and you try to grapple with what the next steps are. I used to pray really hard, but now, I just listen to the Christian radio station on the way to the facility. It's sorta like my way to get my prayers in...the singer's praising God, and I'm a passive participant. I still pray, but I also know that whatever happens, happens.

I go into the room with my mom and I warn the tech about how my mom has small veins. This is an example of me playing the role of Overbearing Daughter, but I would feel awful if I didn't speak up. The last time, her arms were bruised from the tech moving the needle inside her arm, and she still couldn't start the IV. Finally, she called in a nurse. This time, the tech (a different one) promised to be very careful and would try very hard not to hurt her. She was successful though it still hurt more since she used the vein near her hand. The lady then turned to my mom and with a smile, asked, "Do I get an A+?"

"Hells no you don't get an A. More like C-," my mom whispered in Chinese. But she just smiled and said, "Yes, thanks" in English.

So then I went back to the lobby and waited for about a hour and a half. While there I noticed an Asian couple that just sat down. The husband was on the phone, leaving a message on the doctor's voicemail about how his wife couldn't proceed with the scan because the script was completed incorrectly. It was missing an "MPI number." He then left the fax number for the doctor to send a revised script. They then had no choice but to wait in anticipation for the doctor's office to respond. The phone rang  on his cell and it was the doctor's office. Eagerly, the husband and wife hurriedly walked over to the person at reception, handed the phone to her, and said, "Please, talk to the doctor's office to find out what you're missing." The reception lady dismissed him immediately and said, "I will not take the call. You have the fax number." Upset, he asked, "Why can't you just talk to her?" She then said some stuff about "protocol" and he said repeatedly, "Please, just talk to her. Please." You could hear the desperation in his voice. He just wanted things to get ironed out and was playing the messenger. Finally, he angrily said, "Where's your manager?" The manager came over and the reception lady sat in the back on the other side of the counter. He explained to the manager that his wife was having surgery next week and needed to get the scan done. He understood that the script was incomplete. However, he didn't understand why the woman wouldn't take the call, especially since the doctor's office was extremely busy and he had  the phone available right then and there. The manager ameliorated the situation and eventually things got worked out for her to get the scan. But later, he brazenly went over to the reception lady who was psuedo-hiding and asked for her name to write a complaint, which she would not provide. I then heard him said, "What, you don't know your name?"

Honestly, kudos to the husband for putting that lady on blast. I wanted to go up to them and say, "I'm so sorry you had so much trouble." Seriously, this is an example of people who work in healthcare who should not be in customer service.

BTW, here are tips on foods to eat before a PET scan.
Most say to avoid exercising and fast 12 hours before. But some facilities say to go on a low-carb diet to try and avoid false positives.

Friday, April 6, 2012

CEA- Get down you bastard!

After the first cycle of Taxotere, we learned that her CEA level actually increased a few points.CEA is tested in blood. The normal range is <2.5 ng/ml in an adult non-smoker and <5.0 ng/ml in a smoker. Before starting chemo, it was in the 5 range, but after the first treatment, it went up to 7.9. Dr. had it rechecked yesterday, so it's been 2 cycles now, and it was 7.6, so more or less stable. I have been in pins and needles worrying about this freaking number. And I hate it because it's not conclusive. If you google, you'll find thousands of posts regarding how it's not a definite marker. People may have disease progressing, and there's no change in their CEA and it remains low. Others use CEA as a very telling sign for disease progression. My mom's CEA has always been low or just slightly elevated. There's also a study that chemo may induce a surge in CEA marker. This is the link to the study. The conclusion in the study: CEA or CA19-9 surges can be observed in MRGC (metastatic or recurrent gastric cancer) patients receiving chemotherapy. All patients with these surge phenomenons had clinical benefits from chemotherapy. An initial rise in CEA or CA19-9 levels after initiation of chemotherapy should not be used as an indicator of progressive disease.

Mom goes in for Taxotere #3 next Thursday and Dr says she'll test CEA again in a few weeks. All I can think about is my mom and how I hope with all my heart that the chemo is working. Hopefully, in the next CEA test, the marker will be back in lower or normal range. We really need good news.

More Info on CEA:
Benign conditions that can increase CEA include smoking, infection, inflammatory bowel disease, pancreatitis, cirrhosis of the liver, and some benign tumors (in the same organs which have cancers with increased CEA). Benign disease does not usually cause a CEA increase over 10 ng/ml.
The main use of CEA is as a tumor marker, especially with intestinal cancer. The most common cancers that elevate CEA are in the colon and rectum. Others: cancer of the pancreas, stomach, breast, lung, and certain types of thyroid and ovarian cancer. Levels over 20 ng/ml before therapy are associated with cancer which has already metastasized (spread).
CEA is useful in monitoring the treatment of CEA-rich tumors. If the CEA is high before treatment, it should fall to normal after successful therapy. A rising CEA level indicates progression or recurrence of the cancer. (Chemotherapy and radiation therapy can themselves cause a rise in CEA due to death of tumor cells and release of CEA into the blood stream but that rise is typically temporary).
"Carcinoembryonic" reflects the fact that CEA is made by some cancers ("carcino-") and by the developing fetus ("-embryonic").