We met Dr. Asad on Friday and he was quite a small man, a little shorter than me (in high heeled black cowboy boots) and looked like he was in his thirties. He said that he had gone to a Multiple Myeloma conference the night before and talked to the presenter from California. He asked him who his youngest MM patient was and told them he "had them beat" with Tanner. He said that they were interested in his case and would be available for assistance in the future if needed.
He assured us that Tanner's lab work indicated no active Multiple Myeloma at all and I told him that was good to hear but I also explained to him that when Tanner was first diagnosed in 2009, Dr. Daniels at Cook's Hematology told me that if they were just looking at Tanner's lab work, there was nothing there to indicate cancer at all - and that the PA in Arkansas told me that they didn't track Tanner solely by labwork - that they also needed to track the lesions (which is why they had to fight with the insurance company about the need for MRI's and PET Scans so often). Dr. Asad said that he would check with Dr. Berryman in Dallas and see what he recommended but that he felt sure if anything in Tanner's case was changing, it would show up in his blood work that's being taken every week.
He assured us that Tanner's lab work indicated no active Multiple Myeloma at all and I told him that was good to hear but I also explained to him that when Tanner was first diagnosed in 2009, Dr. Daniels at Cook's Hematology told me that if they were just looking at Tanner's lab work, there was nothing there to indicate cancer at all - and that the PA in Arkansas told me that they didn't track Tanner solely by labwork - that they also needed to track the lesions (which is why they had to fight with the insurance company about the need for MRI's and PET Scans so often). Dr. Asad said that he would check with Dr. Berryman in Dallas and see what he recommended but that he felt sure if anything in Tanner's case was changing, it would show up in his blood work that's being taken every week.
He did mention that Tanner's platelet count has been coming down for the last three weeks and that if it continues on a downward spiral, they would need to change his treatment by either lowering the dosage of Velcade and Revlimid - or possibly doing chemo every two weeks instead of every week. Tanner told him he liked the idea of going to treatment every two weeks.
Think about it, Tanner has been having chemo since August, 2009! For six months he had it daily (except for a couple of two week breaks) and then every week for the last two years. How long can you pump poison into someone's body and they not have a reaction? He's done unbelievably well - which is why the doctors say the don't know how long he will be on chemo... Being so young, he's in "uncharted territory".
He started a "job" selling air purification systems and did his first presentation with me so that he could practice. I guess I was a little "negative" when he first told me about it because I told him that it was going to be almost impossible to make such a job work out... that many people try and fail at these sorts of things. I had to call him later and tell him that I was sorry for not being more positive, and that I just knew it was something I, personally, could never do because of my shyness and fear of speaking in front of others.
He came over Saturday afternoon and did the presentation and he was pretty rough - but I was so proud of him. He's almost fearless. He'll get out there and try anything - and he sold a system over the weekend!! If nothing else, it will be a good learning experience for him and will be a job he can list on his resume.
I had a rough time this last weekend. Sometimes I can't control how emotional I become and Saturday I was a basket case. I texted Trevor and Tanner and let them know, and then I just turned off my phones and shut down my computer - and "unplugged" for a while. I slept on the couch and watched the Food Network and read and was just on my own and out of touch for a while. I needed some ALONE time with no beeps or rings... some time to think and reflect - and rest.
Today was a better day, and that's a good thing. I'm tired, deep down to my soul, and ready for better days.
We do not live an equal life, but one of contrasts and patchwork; now a little joy, then a sorrow, now a sin, then a generous or brave action...Ralph Waldo Emerson
I have to "unplug" from time to time Angie! It just gets to be all too much! Good for you! Taking care of yourself is generally buried under the pile of things we have our attention on. It's one of the hardest things for us to do for ourselves. But so important.
ReplyDeleteCongrats to Tanner for his first sale! Understanding sales is a great tool in life. My son took a small sales job while he was in college. He did races, and events and such from time to time. When he got an internship at Disney after he graduated he had to do a project presentation to executives there. Because of his "sales" experience he presented a project they weren't expecting (he's in horticulture) and he won a coveted award they had not even given out in 7 years! All from just an on the job training selling some innocuous product! (I wasn't all that thrilled about it either, but I let it go. :)) It's good to look at all the positives you mentioned and it will lead to something more.
Do not know if it is valuable to your son, but my mom who has this, can only keep her platelets up by using the Hex tanning system. The tanning bed sustained her low count from going down farther, but the Hex I brought her and installed in her basement, she used for 3 minutes a day (typically stand up machines at tanning salons), and made her level rise drastically up to the 200's in a few months._
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