Amazing!!!

eleanorroosevelt143006As a long term cancer survivor of multiple Myeloma, I have had my share of side effects, issues, fatigue, etc…yada ,yada ,yada… It’s not fun being on drugs/chemo for so long but one puts up with it because well,  we want to live. It’s kinda a no brainer. But one of the issues I have had really since my SCT is G I issues.  It really started about 3 years into Revlimid when I noticed I was going to the bathroom a lot. I didn’t really quite register( a little slow on the uptake here) that I was having diarrhea a lot. I know I kept mentioning it to my doctor but he didn’t seemed concerned or said take Immodium.  It started to get worse and I would need to go immediately after I ate and then I needed to know where bathrooms were etc. I didn’t go out to eat unless I felt sure I could get home in time. I figured this was something I had to live with.  I’m off Velcade and Dex now but I was still having the same issues.  Eat, bathroom…..not fun.  Then last week I read the Myeloma Beacons column by Tom Shell about issues he’s having and GI issues. I always enjoy these columns written by very good writers and interesting people.  But I also read all the comments since I learn SO MUCH from other people. Well, someone, Katie, mentioned a drug called Questran for diarrhea and I immediately was interested. I posted a comment to her about the drug etc, but it wasn’t published for some reason, so she didn’t get a chance to answer my couple of questions.  Well, I looked it up and read all the details especially about bile and after eating the release of certain enzymes. It sounded exactly like what I have.  I’m guessing this is a result of so many drugs over the years but also, I think my body is triggering this reaction.  Well, the uptake is I  e-messaged my doctor, who always is very responsive, and said could he order me a prescription for me to try since I’ll be going on vacation in August and I’m concerned about diarrhea.  He said it’s worth a try and did.

AMAZING!!!! I’m taking 1 teaspoon in the morning and I have had absolutely no diarrhea. I want to give a huge shout out to Katie who wrote that comment, because I am amazed.  I don’t to get too confident yet but today is day 6 and it is amazing to feel just a little more confident about going out to town or whatever. I am taking a very small dose and it’s doing the job.

If this has been an issue for you read what it says about the drug. It really described my condition totally.

Waiting and not good neutrophils.

Well, in cancer world , my absolute neutrophil count or ANC, has tanked to 667. Geez, if only it was 666. Then I could say it’s the Devils fault. Oh well, so, he said low but not too too low. ( low normal is 1500), so low. All my other blood work look great. Geez, do I really have cancer?? I just have to avoid people and not get sick if possible.

So, it’s just a waiting game to see if it’s worth it. My Spep test and free light chains won’t be in till Monday. So that’s the answer. If Pomalyst 4 mg worked and brought my monoclonial protein down then I’m on board for low ANC, but if not then Baby it’s time to move on to other things.

Up would be Krypolis a 2 day a week infusion. AHHH , that means sacramento 2 days a week . For 3 weeks, 12 days or 2 weeks off. I guess it’s back to feeling like a cancer patient. When you take a pill like I have for many years, it’s easy to just waltz in to the cancer center. No infusion room… It’s kinda weird but you feel like you’re a little out of the zone. Of course that’s not true, but that’s how I felt. So this will be different.

In other boring news, it’s a weird yellow sky outside due to a fire and really hot. One more day of 100 plus then a cool down!

The room my son left to go the studio is painted a pretty pale green and looks nice. My daughter will use this as her office for graduate studies .  The studio on the other hand is a mess, but I don’t have to see it. The whole , I mean, tiny house , has been a mess for a week. My nerves are shot looking at stacks of things. So, by this weekend hopefully it’ll be back to some sense of normal.

Sunday night chit chat

halfdozendaily.typepad.com

  • Reading? The new Jack Reacher”A Wanted Man” , very good.
  • Listening to? We were listening to the wind.
  • Watching?later, Castle.
  • Cooking/Baking? Made the stuffed shells ,from the freezer cookbook, a big salad with blue cheese dressing.
  • Happy you accomplished this week?alot with my new freezer cookbook.
  • Looking forward to next week? I have next Saturday off, so I’ll go to the farmers market!
  • Thankful for today? My 2 great kids, my cancer is stable, and my husband.
  • *Bonus Question* Do you like your name? Would you change it if you could?
  • I’ve always liked Anne or Annie.