Again, sorry my updates are not more regular, but fatigue is what is really holding me back at this point. I am sleeping a lot, but have been told that is a good thing, so I am just letting my body do what it wants…sleep. I have good days and then bad days. There really is no rhyme or reason to which days I will feel better than others…but again, I just try to go with the flow. AJ has been amazing, tolerating my mental and physical swings and he has been incredibly supportive. Right behind him are my kids! God blessed me with such a wonderful family…and that is not to sell all the rest of you short…your kind cards, calls, emails are so helpful.
I have made a major decision. I am going to stay here in San Antonio, for all my treatment. As some of you might remember I was considering a couple of other options, a very well know place in Arkansas and also, MD Anderson in Houston. Since starting my treatment here, basically because everything escalated so rapidly, and after meeting the rest on the team that will be working with me towards remission, I am very confident the treatment and care that I will receive here is equal to and in some cases better than if I were to leave. They are very personalized here and to have my family and friends close by is very comforting and essential to my psychological and emotional well being. I am thankful for all the input and information that I received from you guys, and please know that this decision was well though out.
My back surgery is now a month past. I am starting to have normal movement again. I am sleeping in bed, finally!, but still cannot lie flat on the floor…it is just too hard, unforgiving surface. I can rotate from side-to-side, which is wonderful. AJ and I can cuddle again! I have started doing just a few yoga stretches but won’t be going back to class anytime soon. Standing, walking and in some cases sitting for a long period of time my back begins to feel strained, but hopefully that too will get better with time.
Are you wondering why I titled this “it is working…God is working?” Well, because it is and he is. There are several elements involved with evaluating the progress and how my body is responding to the treatment. However, I would like to share one very exciting test that really proves that I am responding well to the treatment; the Serum Free Light Chain Assays. These tests are also know collectively as “Freelite.” According to www.myeloma.org website, “It is therefore proposed that Freelite will be a useful tool in the diagnosis and monitoring of NSM,” (non-secretory myeloma) which is what my classification is. The amount of free light chain production is linked to the activity of myeloma or plasma cell growth. So here is the good news:
NORMAL
Kappa: 3.3 – 19.4
Lambda: 5.1 – 26.3
Kappa/lambda ratio: 0.26 – 1.65
On MARCH 11th, before any treatment my test results showed
Kappa: 54.59 (high)
Lambda: 2.15 (low)
Ratio: 25.39 (high)
On APRIL 9th, after the 1st round of treatment (prior to second round) my test results showed
Kappa: 4.36 (in the NORMAL range!)
Lambda 1.47 (a little low)
Ratio: 2.97 (still high, but much closer to normal)
These results are solid proof that I am RESPONDING to the treatment, AMEN!
I will start my third round of treatment this Thursday, April 30th. I feel really good about my advancement. Dr. Dice is fairly sure that she will do a marrow biopsy after my third round of treatment. She feels that my Freelite tests show great response, and because I am NSM, a marrow biopsy is the clearest testing for me to see how close to remission I am. A normal kappa/lambda ratio after treatment is a particularly good remission and is termed a “stringent complete response,” ~ according to what I have read that term is defined as “normalization of the free light chain ration and absence of myeloma cells in the bone marrow following treatment.” THAT SOUNDS GOOD TO ME!
After I reach that point, then we will schedule the stem cell/marrow transplant. Keep the prayers and prayer chains going. I am almost ½ the way. The transplant will be the next major step.
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song. Psalm 28:7
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Terri,
ReplyDeleteI am so glad to read how well you are responding to treatments. We went through the bone marrow transplant with Elizabeth. It was hard but very worth it. We still have her today, 16 years later! My whole church is praying for you. I look forward to seeing you in July in Vegas.
Love, Sandy Lee
Terri, that is wonderful news! My friend's cousin had all his treatments and marrow transplant in San Antonio and is now doing great. Continue to rest when your body says rest and we will continue prayers!
ReplyDeleteLove, Kathy
I am glad you are staying in San Antonio and I am really glad you are responding well to treatment! Nothing can replace having your friends and family around you and I think the care you get there will be great.
ReplyDeleteLove, Dawn Padgett Shen
Terri, I am so happy to hear that you are doing and feeling better. I have been thinking about you a lot and asking Dad about you as often as I talk to him. I look very forward to seeing you and AJ next month.
ReplyDeleteLots of love and prayers, Meagan
Terri- So glad to hear you are responding so positively! That is really wonderful news. We think about you daily. I believe you are already doing the most important thing - Handing it over to G-d. Much love, Laura
ReplyDeleteT,
ReplyDeleteA friend of mine named Dorothy, once said "there's no place like home, there's no place like home" and I know it! She also had beautiful shiny red shoes that the wore - do you have any? If not, I will be on the look out for some for you, what size?
Lil
Terry,
ReplyDeleteI am so pleased that you are responding so well to the treatments.I hope to see you in June. I will be visting San Antonio for a few weeks mid June. Please continue to rest and heal. God Bless you and your lovely family,
Barbara