After my WM diagnosis was confirmed, my oncologist told me we would check my blood every three months to see how quickly the disease would progress. Because I was otherwise healthy and asymptomatic, there would be no treatment in the short term. He would see me in six months and, if my lab results remain stable, that interval might lengthen.
We were impatient to see the results from my first 3 month lab tests because they can reveal a trend line that might show how quickly my disease is progressing. My IgM is the factor to watch and it went from 2017 to 2051. That is considered stable, they don’t even begin to treat until it is in the 4000-6000 range WITH symptoms.
When my numbers continued to be "stable" (IgM 2145) at 6 months from the diagnosis, my oncologist canceled the next appointment. I was a little nervous to go a year without being seen, just after being diagnosed. I saw him again in March of 2011. As usual, I went in the week before to have my blood work. As usual, I checked online to see if the numbers were ready. Bruce was not planning to go with me to the appointment unless my numbers had soared to the point where treatment might be discussed.
I called the oncologist office to see if they had received the results. The nurse put me on hold and returned to tell me that they had. I asked for the numbers and she would not tell me. I explained that they had not posted to my chart online and I needed to know so my husband could decide whether to take off work. She put me on hold for a long time. When she returned she said that I would need to come in and the oncologist would discuss it with me.
My heart sank. I called Bruce and he was very distressed. He took off work and we went in together, both expecting dire news. It seemed like forever, waiting for the doctor. When he came in he said, "Wow, your numbers went down-IgM is 2008." I burst into tears while the doctor stood staring, perplexed. Bruce explained that when the nurse refused to give me the results, we both assumed the worst. The doc said, "that is why we don't ever give the numbers."
I told him I ALWAYS got the numbers because they are on my chart online. He said "you can see lab results ONLINE?? How do you do that?"
I did not have the confidence to dance backwards, trusting this partner to keep me upright. It was time to change.
Truly, we can make our plans but it is God Who guides our steps. In May 2010, I had an opportunity to attend a local meeting of the local WM support group. There were several well known WM experts who came and spoke to us. One of these amazing doctors actually practices in Seattle and my husband and I spoke with him. We were very impressed with his combination of passion and compassion and resolved to try and make an appointment.