The search for clarity...

Hello All

I know it has been awhile since I have sent an update.

I am feeling pretty good, I have energy, I’m eating well, and I am getting out into the world a little bit.

I do not know what is going on next...which is mostly why I haven’t written.


Last Thursday I went to UC to talk with a specialist there and discuss the bone marrow transplant piece of my treatment. Well I didn’t get to talk with the doctor I thought I was going to talk with and the appointment ended up being confusing and distressing.

After being there for 4 hours there was a little bit of clarity, but I left feeling uneasy and scared.

Currently there is a possibility that I will be going to back into the hospital earlier to get my second round of chemo, they call it re-induction. I am not sure at this point what type of bone marrow transplant I will be getting and it is possible I will not know that answer for a while. As you know I was scheduled to go back July 5th, but although I am feeling strong, I am not in remission so it is better to get me back in sooner then later for another round. But so much of this seems to depend on what kind of transplant, and that decision depends on results of tests I had done about 7 days ago and there is a possibility of another bone marrow biopsy ( Whew ). So you can see there are lots of pieces to the puzzle which need to be placed just right so they can get a clearer picture. It is a load for sure!!!!

I am realizing that the thing that makes me the most uneasy is getting to know a new team of doctors. As you know I love Dr. Baron, but if I continue my treatment at UC, I will have a new team of doctors. At UC they work as a team and although they are the best in the world when it comes to treatment for blood Cancers and bone marrow transplant, they still don’t know me, as a person. They may know my info but they haven’t met me face to face really, and yet they are making decisions that will effect my life. This is heavy to me.

I have been in contact with that office and am very clear about my concerns and that I need to be communicated with thru out the various steps. I talked with a very very nice nurse yesterday that allowed me to share my concerns and she was very compassionate and seems to be looking into everything for me. I will hear from her on Wed evening and should get a clearer idea about what is next.

I continue to pray and have faith that everything will work out and that I will be cared for and that people will see me for who I am. I’m have been doing my best to stay in the moment and enjoy my home. I am taking advantage of the time at home to prepare myself for my next hospital stay.

So there you have it everyone. Continue to stay in touch and I will let you know as soon as I know what is going on.

Sending you all lots of love and prayers and gratitude and light. I feel so grateful for having such a HUGE supportive community it REALLY has and will continue to make a difference in my recovery.

Thank you Thank you Thank you!!!

Namaste
Victoria