I decided to go to the Mayo Clinic for a second opinion on my prognosis and treatment plan. Mayo is one of the top Amyloidosis centers in the world and with such a rare and poorly understood disease, I thought it was a good idea to have them weigh in on my case. As someone said on the online Amyloidosis Support Group, "I quickly learned that the doctors that wrote the articles and books do know a lot more about Amyloidosis than the local doctors that read their articles and books."
Granted, my doctor is much more informed than the average local doctor but her primary research focus is Myeloma...related but a separate disease. She's presenting 6 papers at the American Society of Hematology meeting next month--4 on Myeloma, 2 on complications from stem cell transplants, 0 on Amyloidosis.
Given that I have met my out of pocket maximum for the year and Mayo is considered in-network for my insurance, it was important to get the appointment done before the end of the year. So, I fly from Columbus to Rochester, Minnesota on Sunday, December 29th for my appointments on Monday, December 30 and Tuesday, December 31.
To prepare for the appointment, I needed to get a copy of my entire medical record from Ohio State, copies of all my radiology studies (3 ultrasounds, two CTs, two MRIs and an echocardiography) and the actual glass slides from my biopsies. I was worried how long that would take so I went on Monday and put in my request. They pulled together the copy of my medical record--all 350 pages of it--while I waited.
I have access to lots of test results and other information on-line but it doesn't include any of the info from when I was an inpatient. Reading through the inpatient notes was really interesting. Some of the info I remembered, some of it brought back memories and some of it I had no recollection of at all.
It was interesting to read through it, especially the doctor's notes. During one of my appointments in June, Dr. Levin described me as "a thin chronically ill appearing but animated middle aged woman." Even at my lowest point physically, I still had some life in me. Can't keep me down!
I found two things in the medical record that caused me some concern. I always thought, based on my reading and guidance from folks in the support group who've had this disease lots longer than me, I had achieved a Complete hematologic response. But my doctor's notes only list a Very Good Partial hematologic response. At first I was a little concerned because of this graph--
But, the article that goes along with the picture says "Patients achieving a CR or VGPR after HDM/SCT, as defined by the new criteria, had indistinguishable OS (overall survival) and EFS (event free survival), with median OS exceeding 9 years." Ok, so I'll take that.
The other thing I found that was concerning was a diagnosis of Primary Amyloidosis
with Smoldering Multiple Myeloma (SMM). So it's not enough for me to get a rare disease that is only diagnosed 3,000 times per year in North America, I also get an add-on bonus feature of the possibility of developing Multiple Myeloma. That's what is complicated.
But, one of the people I met through the online support group said that he had the same diagnosis from his local doctors. He went to Mayo and Dr. Gertz, who is one of the world leaders in Amyloidosis research and treatment, cured him of the SMM in a few minutes. He said Dr. Gertz looked at all his test results and determined the other doctors were incorrect and the only issue he had was Amyloidosis. I sure hope that's what happens with me. I never thought I'd look forward to getting another diagnosis of Amyloidosis but given this complication, I'm hoping for it now.
My flight back from Mayo lands at 11:59 PM on December 31. Getting the Amyloidosis only diagnosis would be a great way to close out 2013 and move into 2014 with even more hope than before.
One of the songs I've been listening to a lot lately is
"Come Thou Fount of Every Blessing" by Sufjan Stevens. It's a classic hymn with the words written in 1757. One of my favorite lines is "Here I raise my Ebenezer; Hither by Thy help I'm come;". What's so great about raising an Ebenezer?
This information I found online seems to explain my basic understanding of the line--
In 1 Samuel 7, the prophet Samuel and the Israelites found themselves under attack by the Philistines. Fearing for their lives, the Israelites begged Samuel to pray for them in their impending battle against the Philistines. Samuel offered a sacrifice to God and prayed for His protection. God listened to Samuel, causing the Philistines to lose the battle and retreat back to their own territory. After the Israelite victory, the Bible records: “Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, ‘Thus far the Lord has helped us’ ” (1 Samuel 7:12).
The word Ebenezer comes from the Hebrew words ’Eben hà-ezer (eh’-ben haw-e’-zer), which simply mean “stone of help” (see Enhanced…, 1995). When Robinson wrote his lyrics, he followed the word Ebenezer with the phrase, “Here by Thy great help I’ve come.” An Ebenezer, then, is simply a monumental stone set up to signify the great help that God granted the one raising the stone. In Robinson’s poem, it figuratively meant that the writer—and all who subsequently sing the song—acknowledge God’s bountiful blessings and help in their lives.
The next time you sing about raising your Ebenezer, you will be able to “sing with the understanding” that you are acknowledging God’s help in your life (1 Corinthians 14:15).
So, regardless of what happens I'll raise my Ebenezer--acknowledging God's bountiful blessings and help in my life. I guess I need to find a big rock!
