Developed a sore throat today so doctors are meeting to discuss the effect of chemo on that. Starting my ice either way
I’m packing up the jammies and all of my “technology to check in at 3:00 today. Have a little sinus trouble. I hope that does not complicate things. They will hook my Hickman port to fluids for now. I’m going to try and get a room with a good view of the river. My cousin Terry is not sure of she’ll be staying the nite yet. We don’t know about the set up yet. Tomorrow I’ll begin the intensive chemo treatment along with the ice chewing to prevent the mouth sores.
Getting ready to have tube pic line put in at Ochsners. My cousin Terry is here as my caretaker. Thank goodness for that and thank goodness for sedation!!
After that lunch time!
I am going to Ochsner’s Cancer Center in New Orleans for my 2nd Stem Cell Transplant on Oct 21st. My cousin Terry will be with me as my caretaker. I will only be doing 1 drug this time (Melphalan) as opposed to the clinical trial of 3 drug that I had before so hopefully this will be "easier". Wish me luck!
I will be going to MD Anderson soon to discuss stem cells and the possibility of another transplant. Feel way better than I did going into the first one but that doesn’t mean I’m not extremely nervous about it. My energy levels go up and down according to the chemo that I take and I have to say the majority of the time my energy levels are great. I wonder this time how different a transplant is because my last transplant was six years ago.
My numbers (lands light chains) started climbing again so I changed doctors and new drug. Since January started on kyprolis. Also had a mediport installed. Not too bad. Still getting used to it. My little Guesthouse keeps me busy with enough guests.
I opened the Guesthouse and took guests in about five months ago. I also was able to get on disability. It’s going pretty well and I’m meeting new people all the time. I just passed my 6 th Birthday (stem cell wise). So far so good!!
Five years and one and a half months after transplant and the lambda light chains were still rising (46) so I increased the Revlimid and I added dexamethasone on weekends. That made the chains drop to 34. It makes sleeping very hard; I suppose I’ll have to start using Ambien. Neuropathy increasing but I’m still walking. I’m trying to give up sugar and carbs but it’s not easy when you have a mother that likes sugar and carbs. still doing some freelance work at home but not enough to provide a decent check. Not sure I could handle a full time job. I am converting a small barn 10 x 16 in to a guest house, that’s my project for now. I just hope I don’t run out of money. The guest house should provide some income when done.