Hello Bladder Cancer Web Cafe readers,
Marcus continues on his journey through cancer. Even though he has gone through a surgery that wasn't what we'd hoped, more and more chemo because radiation wasn't a choice, he makes the journey with much dignity and grace and we who love him support him along the way. The last PET and CT scans showed that the second rounds of chemo after surgery wern't working. Now he's started a different cocktail - MVAC, which is the traditional cocktail for bladder cancer. With a new plan for pain (oxyicontin sp?) we remain hopeful for many more desert sunrises and visits from friends and family. I plan to go to a benefit for him in Cedar Rapids, Iowa and then we hope to go to another benefit at the Grand Canyon. We'll get by with a little (actually a lot of) help from our friends. The benefits will help me stay home more without worrying about the time without pay. If you want to follow our story you can read about it on the blogspot, http://www.marcusgettingbetterallthetime.blogspot.com. It's a wonderful way to share with family and friends and whoever else wants to share in our journey.
EDAG (Every Day is A Gift), Peggy
Peggy here. Marcus continues to live like every day is a gift. I'm learning that travel is different and still possible. I highly recommend it for those who can do so. Check out http://www.marcusgettingbetterallthetime.blogspot.com - Marcus has a gift for writing and sharing about his journey with cancer.
The pouch is less and less of a bother. The cancer is in a lymph node in his shoulder and there are spots of it in his liver. They cut out taxol because it's too difficult for him. Now he's on a Friday (gemzar and cisplatin), Friday (gemzar and boosters), and then Friday off, schedule. PET scan the end of this month and then??? Likely he'll just continue with this schedule because radiation isn't an option anymore. He can feel the cancer which presents as a burning ache in his belly usually - I know he really wishes he didn't have his bladder. His bowels are moving better and this is most important. He can't nap, something he'd perfected, due to tense muscles, and sleeping is aided by Ambian and night time tylenol or lortabs.
Mostly, I'm wondering if any of you can share about what we might expect. While I understand that each person has a unique journey, I'm just thinking there must be someone who has a similar story.
*****CONSULT YOUR DOCTOR FIRST****, but here are a few suggestions YOU CAN ASK YOUR DR. ABOUT from those of us who arrived at this point before you:
Glycolax, Glycolax, Glycolax...Caster Oil too if he can take the taste. The Glycolax is a prescription strength, and can be mixed with any drink...my husband used it 2x's a day to start and then tappered off to 1x. I have to say this was the biggest obstacle for my husband as well. Watch his diet too...his mouth may want one thing but his bowels will not know what to do with it once it arrives.
Also, if he says he is not hungry, believe him...don't say "You have to eat Something" because he really doesn't...It may just make matters worse...it is the body saying: "if you give me anything right now I will either throw it up or not be able to pass it".
He will definitely eat when he is hungry. Nutrition shakes help too, they are light, have the necessary ingredients and aren't too complicated for the body to figure out what to do with.
Whenever he takes pain medication he should also ask about a MILD stool softener NOT a laxative to be taken at the same time.
On the days when things really get HARD so to speak (this is because the body is taking all the fluids it can) a "Fleet" enema may be necessary...
It is easy to tell him to drink enough water to get extra fluids, but to someone on Chemo that is so much easier said than done...sometimes even water can make him nauseous...
Don't wait to long, bowel obstruction can happen so make sure he is telling you when he is going, or not. It would suck to have to go to the emergency room for that.
******AGAIN PLEASE CONSULT YOUR DOCTOR BEFORE STARTING ANYTHING****
Remember that with Metastatic Disease the Chemo doses are stronger.
Good Luck to you both, and try to have a Happy Holiday! EDAGD
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.
Life isn't about how to survive the storm, but how to dance in the rain.
Hello all, This is Peggy, Marcus' wife. Marcus is in Flagstaff getting chemo tomorrow and I'll go one more day of school before winter break, family visits here in Big Water, and a trip to Mexico for some much neede r&r at the beach.
Since I last wrote, we have learned that the cancer has spread too much to do radiation so we're back to chemo. Crazy, but Marcus feels best after he's had chemo. Relatively no pain. But, for the question...what to do about constipation. This is such problem - never has the state of bowel movements been such a topic of converstion in our home. WE WELCOME ANY SUGGESTIONS!
Hope for quick responses. PEggy