Good news! My marrow biop does show that I am responding to treatment. I haven’t seen the hard copy of the results, but as soon as I do I will give you all the details. Dr. Dice just told me that I am responding! So that is all I need to know. The problem with my platelets, is just what it is, problematic. In Dice’s words, “my marrow is basically insulted and tired of being attached by cancer and chemo.” Dice did speak with LeMaistre (transplant doctor), and he said to just give me all the blood support I need and get me clean. If you guys remember last time I went into remission after 3 cycle of chemo. So I guess I will be getting more transfusions if my plates don’t stay up.
Now, I did have chemo last Thursday! Yeah! I never thought I would see the day that I was excited about getting chemo, right? Well, if I don’t get chemo I don’t get better.
As you know my sister is a match, and I will find out next week how all that is going to fall into place. AJ and I did go to a meeting last weekend, the guest speaker was Lemaistre’s partner, Dr. Shannesey. His topic was “Living with Myeloma,” I like that! Something I did find out from this talk, is this is my last shot for transplant. I will not be able to do it again. It is strange to think, your marrow is a living organ, just like your heart, liver, kidney, etc. So I am literally talking an organ from my sister. So it is important to pray for my body to accept this marrow, not reject it. And the good news is if I accept it, I can get “boosters” from her if needed. Pray for her to harvest lots and lots of marrow. So they will have tons extra to freeze for me later.
The joke of my sister finally being a “10” is typical of my not so serious family (thank you Daddy), but now I will be a “10” too (at least my immune system)! AJ feels Linda being a “10” is the most important “10” in his life!
What’s that they say, “God works in mysterious ways?” Yes, he does.
“Bless the Lord, O my soul, and forget not all His benefits; who forgives all your iniquities, who heals all your diseases.” Psalm 103:2-3
Saturday, January 30, 2010
Tuesday, January 26, 2010
Match Point!
I have been writing this blog entry in my head for several days now, but so much has happen since I wrote it in my head, so I have to start with these words, “I AM a child of God!”
Now, I am going to back track. I started my first round of chemo on January 4th. It has not been as easy as the last time. When I say easy, I mean my blood counts have been struggling, and I found out that this returned cancer is very different from the last. These cancer cells are cytogenetically different from the last, which isn’t good. Even being NED (no evidence of disease), or cancer free since my transplant, I was told that MM cells can hide…and won’t show on any testing until it starts attacking. That has happen, a clone was striped away but not dead, it “mutated,” changed, into something different and much more aggressive than the last. I have been going monthly for blood test since my NED status, everything has been good, but in December they was a drastic change….hence, cancer back.
So during this first cycle of treatment, my platelets have been critically low. I have had 4 transfusions of plates, but they just will not hold. Same thing with my white blood cells. I did get 3 rounds out of 4, of chemo treatment, but I just am not responding as I did before. So today, which should have been my 2nd cycle, first round, my counts were not good enough to have treatment~ AND this is why I love my Dr. Dice…she decided immediately to do another marrow biop, right then. Dice does not wait, she acts! I will have result in a few days. She doesn’t like what is happening with my labs, and because I am “nonsecretory” the only way to really know what changes have been made is another biopsy. I am excited, she will be able to compare this one to the one on Jan 31st. It is going to give us great direction!
For the long term, I do have an appointment with Dr. LeMaistre, transplant doctor, on Feb 3rd, to discuss “the plan.” I do know that I must have what is called an “allo.” I will have much more to report after that meeting. Here are a few simple descriptions: Autologous bone marrow transplant - The donor is the person him/herself. Allogenic bone marrow transplant - The donor is another person whose tissue has the same genetic type as the person needing the transplant (recipient). Because tissue types are inherited, similar to hair or eye color, it is more likely that the recipient will find a suitable donor in a brother or sister. This, however, happens only 25 to 30 percent of the time. I need a donor, not always so easy.
NOW for the very important news!~ God is so good. Both my siblings were willing to test and donate, but as you can read, only 1 in 4 are a match. If no sibling match, I have to go out to the National Donor bank. I have been really been depressing about this. James tested as a “no match” last week, I was disappointed, as was he. But Linda called yesterday and she is a MATCH! Not just any match but out of a scale of matching from 1 to 10, she is a 10! The best match possible. I cannot tell you the emotion that just flooded over me. It even surprised me! I realized the idea of a “donor” was really dragging on me, especially since a donor transplant is said to be more of a lengthy, difficult recovery than what I have already done. I just wasn’t feeling good about the whole thing; I hadn’t been able to mentally build up my strength and had been praying for a real sign! And I got it!~ My sister’s match, glory to God, Amen.
I thank both my brother and sister, Jim and Linda, for being there for me!
Actually, the signs started coming over that past weekend. AJ and I went to a beautiful wedding in Austin last Saturday. The surrounding could not have felt more holy! The most gorgeous 19th century Catholic church, beautiful choir (like I was surrounded by God’s angels), a fantastic homily by an extremely inspiring black Baptist preacher turn catholic priest (I don’t really know that to be factual but it seemed like it~ he was amazing), and finally I sat by a complete stranger that ask for my blog address and told me this, “the power of prayer is more than anyone knows!” I looked at him and said, “Yes, I know, but sometimes fall weak and forget. Thank you so much for reminding me!” On the way home, my faith was anew! But, the call from my sister on Monday was the clearest sign of all~ She and I both, give all the glory to God!
Love to all of you who are praying, sending well thoughts, and following me so closely. I feel so incredibility special! Faith is everything to me, and I am so relieved to have it back in “full swing!”
“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1
Now, I am going to back track. I started my first round of chemo on January 4th. It has not been as easy as the last time. When I say easy, I mean my blood counts have been struggling, and I found out that this returned cancer is very different from the last. These cancer cells are cytogenetically different from the last, which isn’t good. Even being NED (no evidence of disease), or cancer free since my transplant, I was told that MM cells can hide…and won’t show on any testing until it starts attacking. That has happen, a clone was striped away but not dead, it “mutated,” changed, into something different and much more aggressive than the last. I have been going monthly for blood test since my NED status, everything has been good, but in December they was a drastic change….hence, cancer back.
So during this first cycle of treatment, my platelets have been critically low. I have had 4 transfusions of plates, but they just will not hold. Same thing with my white blood cells. I did get 3 rounds out of 4, of chemo treatment, but I just am not responding as I did before. So today, which should have been my 2nd cycle, first round, my counts were not good enough to have treatment~ AND this is why I love my Dr. Dice…she decided immediately to do another marrow biop, right then. Dice does not wait, she acts! I will have result in a few days. She doesn’t like what is happening with my labs, and because I am “nonsecretory” the only way to really know what changes have been made is another biopsy. I am excited, she will be able to compare this one to the one on Jan 31st. It is going to give us great direction!
For the long term, I do have an appointment with Dr. LeMaistre, transplant doctor, on Feb 3rd, to discuss “the plan.” I do know that I must have what is called an “allo.” I will have much more to report after that meeting. Here are a few simple descriptions: Autologous bone marrow transplant - The donor is the person him/herself. Allogenic bone marrow transplant - The donor is another person whose tissue has the same genetic type as the person needing the transplant (recipient). Because tissue types are inherited, similar to hair or eye color, it is more likely that the recipient will find a suitable donor in a brother or sister. This, however, happens only 25 to 30 percent of the time. I need a donor, not always so easy.
NOW for the very important news!~ God is so good. Both my siblings were willing to test and donate, but as you can read, only 1 in 4 are a match. If no sibling match, I have to go out to the National Donor bank. I have been really been depressing about this. James tested as a “no match” last week, I was disappointed, as was he. But Linda called yesterday and she is a MATCH! Not just any match but out of a scale of matching from 1 to 10, she is a 10! The best match possible. I cannot tell you the emotion that just flooded over me. It even surprised me! I realized the idea of a “donor” was really dragging on me, especially since a donor transplant is said to be more of a lengthy, difficult recovery than what I have already done. I just wasn’t feeling good about the whole thing; I hadn’t been able to mentally build up my strength and had been praying for a real sign! And I got it!~ My sister’s match, glory to God, Amen.
I thank both my brother and sister, Jim and Linda, for being there for me!
Actually, the signs started coming over that past weekend. AJ and I went to a beautiful wedding in Austin last Saturday. The surrounding could not have felt more holy! The most gorgeous 19th century Catholic church, beautiful choir (like I was surrounded by God’s angels), a fantastic homily by an extremely inspiring black Baptist preacher turn catholic priest (I don’t really know that to be factual but it seemed like it~ he was amazing), and finally I sat by a complete stranger that ask for my blog address and told me this, “the power of prayer is more than anyone knows!” I looked at him and said, “Yes, I know, but sometimes fall weak and forget. Thank you so much for reminding me!” On the way home, my faith was anew! But, the call from my sister on Monday was the clearest sign of all~ She and I both, give all the glory to God!
Love to all of you who are praying, sending well thoughts, and following me so closely. I feel so incredibility special! Faith is everything to me, and I am so relieved to have it back in “full swing!”
“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1
Friday, January 15, 2010
Happy New Year~ 14 days late.
Well, it has been a while. The holidays came and went. It was fully my intention to write and wish everyone Merry Christmas, but time as it does during the holidays just got away....So let me start with HAPPY NEW YEAR, 2010!
2009 was a glorious year as you all know God really did some wonderful things, I had cancer, then went into complete remission, went on a wonderful trip with AJ to Paris, south of France and London. Teal took over the Thanksgiving dinner, Christmas was very meaningful and then came the new year, 2010. My first day of 2010 set the tone for rest of my year~ The MM is back. Not only is it back, it is back with a vengence.
Please don't dispare. On the 29th, I my blood test did not show well, I had another test on the 30th, and Dr. Dice decided to do a marrow biop on the 31st. Now that is what I call a DOCTOR, biopsy new year's eve! She knew in was a holiday weekend, yet push my case through inorder to get test results so that she could start new treatment ASAP. And she did. I had my first round of chemo on Monday the 4th and a away we go!
I will give more detail later, but I wanted my MM family to start praying for me. This is nothing that cannot be handled, but it must be handled with prayer. Prayer for me, prayer for Dr. Dice, prayer for Dr. LeMaistre, and for the numerous physicians Dr. Dice has sent my case to nationwide, because this is a very interesting case, I will share more with you later...(as soon as I really fully understand it!)
Some of you may be angry, I say please don't. Anger and bitterness is exhausting. God is going to take up my cause and the bad will turn to good, therefore, I am laying it down. In my mind, I will beat MM again, or somehow I will be a greater part of beating it for someone else, that is good enough for me.
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
2009 was a glorious year as you all know God really did some wonderful things, I had cancer, then went into complete remission, went on a wonderful trip with AJ to Paris, south of France and London. Teal took over the Thanksgiving dinner, Christmas was very meaningful and then came the new year, 2010. My first day of 2010 set the tone for rest of my year~ The MM is back. Not only is it back, it is back with a vengence.
Please don't dispare. On the 29th, I my blood test did not show well, I had another test on the 30th, and Dr. Dice decided to do a marrow biop on the 31st. Now that is what I call a DOCTOR, biopsy new year's eve! She knew in was a holiday weekend, yet push my case through inorder to get test results so that she could start new treatment ASAP. And she did. I had my first round of chemo on Monday the 4th and a away we go!
I will give more detail later, but I wanted my MM family to start praying for me. This is nothing that cannot be handled, but it must be handled with prayer. Prayer for me, prayer for Dr. Dice, prayer for Dr. LeMaistre, and for the numerous physicians Dr. Dice has sent my case to nationwide, because this is a very interesting case, I will share more with you later...(as soon as I really fully understand it!)
Some of you may be angry, I say please don't. Anger and bitterness is exhausting. God is going to take up my cause and the bad will turn to good, therefore, I am laying it down. In my mind, I will beat MM again, or somehow I will be a greater part of beating it for someone else, that is good enough for me.
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
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