bedambedam
bendamron's Cancer Blog
April 7, 2008
| this past week | Views: 455 |
i can’t believe it’s been almost a week since my last post. people have emailed me wondering of new news and updates. this makes me think of the time (age 10 or so) when i took over my friend’s morning paper route for the week. one morning i woke up an hour late. i couldn’t believe how many people were up waiting and pissed off that their paper was late (years before the internet). i was so embarrassed, and maybe even a little scared, that i couldn’t finish the route fast enough. everyone loves their daily dose, and i won’t let so much time pass again.
i’ve had some emotional ups and downs the past week. i had a spell of anxiety last thursday anticipating dr. otero’s meeting with angel the following day. i worked myself up wondering why this appointment was taking place. he took angel’s CEA count (tumor markers) last monday before her big infusion of folfiri, but they weren’t ready as of 6pm that night. i felt suspicious since we usually get the readings the day of, and this suspicion manifested into fear that her CEA count was off the charts.
that night i attended a cancer seminar at fred hutch with roz (she recently loss her mother to cancer and has been gracious enough to listen and share her own experience with me, it’s been a comfort), and met up with an amazing woman named anita mitchell (google her). we met last month at gilda’s during a colon cancer awareness q&a with oncologist dr. sam whiting from the UW (i’m hoping we get him this thursday for another opinion). she is a survivor of stage IV colon cancer and has been in remission for a year or so now. her story is quite remarkable. as you know stage IV of any type of cancer is severe. anita is a strong voice and advocate for colon cancer. i want to jump on board and see what i can do to help advocate for people who are in my same situation.
i think i sort of felt this calling during the q&a portion. parents of a young man in his 30’s has stage IV colon cancer (it’s still shocking, diagnosed the same year he got married, bought a home and landed his dream), and they were telling and asking how they can help their daughter-in-law who is having a very difficult time of it. in this auditorium of 40 or so strangers, all linked by cancer. i spoke up and rambled about the struggles i have been experiencing and how difficult it is coping with a loved one at such a young age like ourselve. like most, public speaking can be terrifying, but confidence in the subject matter makes it less so (speech class is finally paying off) i have found groups out there for people like us, and shared it with the parents (youngcancerspouses.org). after the seminar i stayed behind and discussed further with the parents and anita. i learned that the son’s doctor is otero as well, and they only had goodness to say about him too.
my anxiety fluttered away this night, i was feeling a high and a boost of optimism. talking about the experiences of cancer, and finding people who are also coping with it really empowered me, and made me less afraid. i want to return this same feeling to others. i feel like an old pro already, yet i know i have so much more to learn and experience on this topic.
the meeting with otero went well, and indeed i was paranoid. he wanted to go over this pain angel has been experiencing. she’s once again doubled her pain meds, and is managing between controlling the pain and hallucinating. otero wants to go back to the drawing board and try to re-diagnose the pain in her abdomen, he’s perplexed and says it might take him three months. so until further notice, angel will stay on her soft food diet.
otero also showed us the CEA marker count (i’ll post this chart later today) her levels have dropped by nearly 200 points from 400 since she’s been on folfiri. it is working, and another CT scan after the next couple of cycles of treatment will show which tumors are decreasing. we know from the last CT scan, that the tumors on the lung and lymph nodes are shrinking, i just have to believe that the tumors on her liver have gone down, if not just the tiniest bit the naked eye cannot detect.
of course this news is good, but we’ve put up our ‘cautiously optimistic’ flags until the next CT scan.
last thursday night, lindsey dropped off another bag of prepared food which we’ve enjoyed ever since. i blended the chicken noodle soup for angel which she really enjoyed, and also (don’t gag!) the lasagna. it was angel’s idea, but it worked. getting calories into angel has been a challenge. she foregoes her morning yogurt after two bites. her stomach is distended, but she doesn’t seems to notice it as much as i do. that’s probably a good thing.
susan arrived yesterday, and i think she’s noticed the changes in angel’s physical mobility and appearance. she is thinner than the last visit, and walks/moves around much slower. i don’t see the daily changes as much, but compare by recalling her usual vibrant self from past months and years before the diagnosis. it makes me sad, and chokes me up, but this is what we should all remember her of, so when that day comes along she cartwheels past your slow ass, it won’t shock you too much. angel’s sharp wit remains, she still makes me laugh, and i still love it when she’s bossy.
susan plans to buy some perennials for angel to plant around the house. i think gardening will be a relaxing and nice hobby for her to enjoy. i think she’d also enjoy some weeding and popping out the 1000’s of dandelions in the yard, and mowing the lawn too. probably not.
today she has her cetuximab infusion and more labs. more progress.
05.04.08 - 
Thanks for your support -
Dear Ben; You are such a prolific writer and explain the progess of your wife’s battle with such clairty and humour. I was wondering if you could explain what CEA markers are. Is that registered in the blood and what is the normal level that it should be? Dr Otero sounds very compasionate and I guess there is a frustration in all this from a medical point of view. The patient must be willing to comply to the various treatments that are offered and at its very best, the roller coaster of emotions are always present in spite of the fight. My fight seems so small and quite unimportant but for one thing. The club of patients we have gathered here on Blog for a Cure is special and exclusive. Without the support I think I would be most lost. I have nursed my 3 parents (Mom, Dad, step mom, with cancer over the years and watched them fight too. There is always a compromise on food selection that is for sure. I remember my Dad could not stand the smell of cooking in the house so we only could sever him cold stuff or soup that was heated in the microwave. Your story brings back floods of emotion for me but I am glad that happened. I try to put those feelings away some where so I don’t get down in my own battle. However, I also gain strength remembering their own courage and determination in spite of the staggering odds. They were brave troopers. Thanks Ben for sharing your stories with us. God bless you both and keep up your wonderful spirits.
I am so sorry for the experience that you have to go through. It amazing that you still have not lost your faith to carry you through. I have just started a blog
victimofcancer.com not spam, just want the word hardships of cancer to be as accesible as possible to others
recently about the hardships of losing a loved one to cancer. I have not experienced cancer myself, however i am still a victim becuase my father suffered from stage 5 stomach cancer and i was by his side the whole noble fight. I am going to keep reading your blog and i look forward to hearing reading your next post to see the progress.
thanks
Andy
You remain an inspiration! Your writing and attitude are very helpful to my position.
Thank you for sharing those resources.
I’m on it!
T$