M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.


Wednesday, March 28, 2012

Goodness I'm bad at keeping up with this!

And that really just means that things are busy, and it's been "good busy". :)

I've been feeling pretty good. A little tired from the anemia still, and a few little colds have blown through but nothing like November when I was so sick. I think it's a combination of my immune system improving and the fact that I now force myself to recognize I do still have limits and need to rest when I start felling something. Maintenance is going ok, the dex is still the worst part. I'm so amped and scatterbrained on the day of then coming down the next day I'm grumpy and short-fused. I need to do some research to see if there is anything that helps take the edge off the withdrawal. I started taking MetanX back in January for the peripheral neuropathy and I have really noticed a difference so I would recommend anyone experiencing neuropathy to try it out. It's a pescription B vitamin supplement approved to treat neuropathy in people with diabetes. It contains a specific form of B12 called methylcobalamin, the ore common cyanocobalamn is apparently not as effective so be careful if trying to supplement without the prescription. They prescribed this is Arkansas, and my home doctor/nurses didn't seem to know too much about it or give it to other patients. Hopefully me mentioning it to them will change that. Back in January I was getting tingling and numbness in toes and fingers starting about 24-48 hours after Velcade each week. I would also get a mild hot/burning sensation on and off, and my perception of hot and cold would be off in my fingers, which I found quickly was not so good when testing bath water. ;) At first I couldn't figure out why the kids kept complaining it was too hot. I have barely noticed any neuropathy at all for the past month at least, just the occasional very mild tingle but not every week and not continuously. No more burning at all.

I also determined last week that eating a big cheeseburger (of the delicious 5 Guys variety) may do wonders for my hemoglobin. On Wednesday my hemoglobin 11.9 (just under normal). On Friday I had a cheeseburger (normally I don't eat much red meat), and the next Wednesday my hemoglobin was up to 12.5! That was the highest it had been in months! Now I have a really good excuse to back my cheeseburger indulgences.

In other (mostly) non-medical news, March was super busy and it flew by! My daughter celebrated her 6th birthday, which was awesome. Last year I missed her birthday because I was in Arkansas getting started on treatment. That was so hard. I knew I was doing the right thing, but missing that day really hurt. Now a year later I've come so far, and we had so much fun making her birthday special. Although, when she woke up on the day I asked her if she was excited to be six. She thought about it and said "I kind of wish I was still 5, I really liked being 5.". So sweet! Also proof that we did a good job keeping last year normal for the kids. That made me feel really good, because that was one of our main concerns.

Now that it's been a year since I started treatment, I've been thinking back a lot. It's just crazy to think that last year at this time I had just arrived home after induction and stem cell collection. My hair was on it's way out then, and now it's a crazy curly mop! I'm not obviously a cancer patient anymore It's been a long year, probably the hardest of my life. I've learned so much along the way, met so many great inspiring people, and learned my fabulous my friends and family are even more amazing than I ever could have imagined!