Ray and I went to Mass General Thursday, June 18th. I had blood drawn from my port and we met with Dr. Zhu. I continued to have the mouth sores, pain when swallowing. I asked Dr. Zhu if it would be okay to reduce the trial drug dosage to help with the mouth sores. He reluctantly agreed. So instead of taking 125 mg, I’m taking 100 mg. Quite honestly, haven’t noticed any difference. I went to my PCP, Dr. Singh last Tuesday and he gave me a prescription for the Miracle Mouthwash but added an antibiotic and an antifungal. I’m taking that and the Nystatin, which also has an antifungal in it. I actually had more sores that came and went. I continue to have pain when I swallow, although it’s gotten a little better and have a sore on my lip. I’m hoping that when I have my off week, that starts Thursday, that I have a few days of no sores or pain.

My hair continues to thin. I went to my hairdresser last Tuesday and she cut it short. I like it. It’s still not noticeable to anyone that I’m losing hair, but I’m well aware of what comes out in the shower when I wash it, when I brush it. I’m getting used to the idea that I may lose it all, but thankful that it’s still not bad enough to have to shave it off.

Looking forward to the trip to Mass General on Thursday. It is CT scan day. Not that I’m looking forward to the milkshake I’ve got to drink beforehand, but can’t wait for the results. Feeling optimistic.

Had a great dinner and visit with my IPMS friends last night. It’s just great to get together with them and catch up on our lives and life at IPMS. Some things never change though . . .So thankful that I’m not working and don’t have that added stress in my life – I can’t imagine working through this. I’m very lucky that I don’t have to.
Ray and I are going to New Hampshire this weekend. There is a family reunion for his Mom’s side of the family. His sister Janet and husband Kevin are hosting it. They’ve been doing this for a few years now. Looking forward to seeing everyone.

Will update with the results of the CT scan as soon as I can. Not sure when I’m getting the results.
Thank you all for your love, support and prayers. You are my strength!!!!