Wednesday, April 27, 2011

Visit to May Clinic

I had my appt. today at the Mayo Clinic. This has been such an incredible journey. The Dr. who specializes in Multiple Myeloma has been studying my case for 2 weeks and after our discussion has determined that for whatever reason, the Multiple Myeloma symptoms that were detected in October, have gone into remission. He is not sure if the bone treatments, Zometa, taken in Nov. and Dec. played a factor but he has never seen, nor have any of his colleagues seen this type of remission before. That leads him to believe that there was some other reason for my symptoms but none that he can identify. He considered a mix up of tests, which does occur on rare occasions but disregarded this because my results have changed over time and not immediately returned to normal until last month. He looked at both PET scans and was "frankly amazed" at the activity in October vs. the lack of activity in February. He has NO explaination for that. He considered tuberculosis, virus, infections but given that my results are now normal, he cannot even investigate those possibilities.
He will be writing a report on my behalf to remove the diagnosis but recommends that we continue to monitor for a period of time. He is leaving for Paris next week to attend a conference on Multiple Myeloma and will see Dr. Barlogue from Arkansas and will share this information with him. He asked to retain the CD's of my PET scans as well as my blood work so he can share this information at the conference.
When asked if he believes in miracles, he said, "I would like too!" Although he ordered blood work and would like to see me again, he is hopeful that this was not a result of the Zometa as that would mean an eventual return of my symptoms. For now, he said, "I'd like to believe that this is a miracle, a special case of circumstances that reminds us all of the hope that surrounds us everyday." We parted and I am thrilled.
So what does this mean? I will never forget all that I have learned during these past months, nor will I ever forget how important our family, friends, and the people we don't know, YET are as we journey through this life. I have been blessed and plan to share that blessing by being there for all of you as you face struggles in life. I have new challenges that previously would have discouraged me and depressed me but that will not happen for I have seen what is important and the problems we face are generally things we can overcome as we stay the course of goodness in the eyes of the Lord.
I pray that I will continue to find ways to express his love and I hope that all of you know to count on me if you need support as that is what we CAN control and give to each other.....the rest is up to God! Love to all! Susan

Wednesday, April 6, 2011

Update 4-6-2011

Well, I just received my latest blood test and my proteins are finally in the normal range. Originally 2800, dropping to 811, then 601, then 487, 481, 430 and now 368. Normal is 70-400. I have not had any other treatment to date but I do have another Dr. looking at my case on April 27th at the Mayo Clinic. I am anxious to see what they have to say as are my Dr.'s here at Texas Oncology.

In the meantime, I contacted my regular Dr. as I needed a refill on my blood pressure perscription and requested that she call in the refill since I am having blood work done on a monthly basis with my oncologist. She said that I needed to come in and get blood work done. Needless to say, I will no longer be going to her anymore. Our medical services really need to be looked at carefully. The abuse of paying for things like this are really hurting all of us. Keeping my sights on God and happy to be alive and feeling well. Love to all. Susan