Grief
Definition: deep and poignant distress caused by or as if by bereavement. A cause of such suffering. An unfortunate outcome : disaster —used chiefly in the phrase come to grief. Mishap, misadventure. Trouble, annoyance
Well, we are back in the saddle. ChemoSabe began his #2 Consolidation and had the port put in yesterday. The doses are stronger this time. I am praying he doesn't have any problems like his first round of chemo, way back when....
I had a response back from Ruthie on the definition of stem cell. If you recall, she is from OKC and she likes to answer (and she definitely has the experience) all the questions on the tests. So, here it is:
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Pick me, pick me, I always had to be first in school!
Truly, this is a very complicated disease and also hard for our family members to comprehend…..hopefully this will help some….
A stem-cell is a component of the blood that is “unspecific” or it is a baby and does not know what its job is going to be yet. Unlike specific stem-cells that are grown-up and know that their job is to replenish the cells of a muscle, heart, etc. Since stem-cells don’t know what they are going to do yet, when grown-up cells are attacked (like with Multiple Myeloma) they scream for help from the babies that don’t have a job yet. As long as there are enough babies to help, there are only mild symptoms of the disease. When the babies get low, and can’t offer enough help to the grown-up cells, then bigger symptoms appear like fatigue, back pain, broken bones, kidney failure, etc. Thus, a really early diagnosis is rare!
Soooo, we go to UAMS and they harvest “suck out” the stem-cells or baby cells (hopefully there will still be a few million) from the patient. It is better to harvest from the patient because their stem-cells are already acquainted with that body. Then they give the patient a heavy dose of chemo to kill all cells (unfortunately, good and bad, which is why the patient gets so sick); when the patient is literally neutral of all cells; the patient is given millions of those babies (stem-cells) to go to work to help the bone marrow produce millions and millions more babies that can replenish the marrow. Stem-cells can divide and renew themselves many, many times and can do this for long periods of time—grownup cells cannot. The longer the cells stay unspecific—or babies-- the longer they will divide and repair.
That is always the goal to maintain periods of good quality of life….like riding bikes and going RVing. Remember, there is no cure yet—took me a long time to say that!
Sooo, that is the stem-cell lesson. The teacher always comes out in me!!! I miss my classroom and interaction with my students. But, we will keep on and on…..and enjoy what we have. I promise to let someone else answer the next question.
Ruthie
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I just love her, don't you?
The grief from my mom's passing is just about to eat me up, on top of the chemo beginning this week. Then I have the income tax stuff to deal with as I have procrastinated. If you are a caregiver, you can understand that I am about to just pack up and run... Then, I think about ChemoSabe and the things he is going thru with trying to work and keep up his treatments. I guess I am having my own pity party.
Labs are good this week, with platelets being steady at 80. They are suppose to be above 100, but we don't worry until they are below 50. CRP (crap) is up to 6.54. I was concerned, but the nurse says it is okay.
He is taking 20 pills a day right now, but those will reduce in the next four days to about 12. I line them up on a napkin at night and put a.m. in one corner and p.m. in the other. He is a trooper, but I found him putting some back in the bottle a couple of weeks back. So, I am keeping an eye on him.
I still look at this man and I can't see him ill. In the back of my mind I see it could get worse, but those are things I try not to focus on. I still see us sitting on the porch when we are 80-90 talking about the experiences we have had.
I am glad the weather has been raining and cool so we don't have the desire to ride. I don't see a good day any time soon. I have ridden a couple of days by myself, but then it isn't as enjoyable or fair.
As you can see, I am rambling --- Just wanted you to know I had not forgotten about you. As we get deeper into the treatments, I will write more with how he is progressing.
Good afternoon and Love --- Pepper
Chemo Sabe
- ChemoSabe
- Benton, AR, United States
- Diagnosed with Multiple Myeloma-- May 2008
Tuesday, March 31, 2009
Thursday, March 19, 2009
Blessing -- Word for the Day -- Wednesday, March 25, 2009
Blessing
Definition: the act or words of one that blesses b: approval , encouragement; a thing conducive to happiness or welfare.
We were blessed to be able to get out of town and escape to such wonderful people in Illinois. We were pampered, entertained, fed and consoled. I am ready to go back.
ChemoSabe came through all his tests last week just fine. He gets the port and begins chemo on Monday, 03/30. We are ready. This should be a drop in the bucket.
He recovered from his Walking Pneumonia, but I truly believe it was because we got out of town. He took off work on Friday and Monday and that made a world of difference. He would have kept on ticking like that damn ole battery if we had stayed in town. Big E was sick, too, but was 100% better when we got back.
I miss my mom terribly. If I could just touch her hand or smell her one more time for just a few seconds. But, then, I would need to do it again and again. I think of her each day. This week started out bad with her on my mind because when ChemoSabe did the blessing at dinner the other night he asked for God to take care of her. I haven't been able to think of her without crying since.
My sister-in-law, if you remember, had stroke like symptoms when my mom first had hers in October. It resulted in a brain tumor that was cancerous. From then to now, her cancer has spread and she is Stage IV. She had radiation that burned her throat which now makes it difficult for her to eat. The chemo was first too strong and it made her kidneys go into failure. That was going on when mom broke her hip.
She has since improved, but was placed back in the hospital this week with the same problems with her kidneys. She has had six pints of blood since yesterday. My little brother has been beside himself with grief, with losing my mom and he feels now he is losing his wife. He, too, is a wheelchair victim from a disease called Reiters. He has been that way sinc 1997.
We are all going out to his house this weekend to clear some land where my mom's mobile home use to be. It is just within a few hundred feet of his home. So, her death has been a major toll for him going out his door every day and seeing her deck and wheelchair ramps, with a home.
ChemoSabe is looking and feeling very well. He doesn't know what to do for me with my emotional times. I do find he helps more around the house when I am crying.... Have I found a tool? ha.
I have dreaded this next round of chemo. Maybe it is just the inconvenience. Just when you can plan to do anything at any time, then the daily Infusion visits and labs return. You can't really plan a day trip on the bikes, or even to work in the yard.
Roger and Ruthie got through the second transplant and are already back home. Just like any transplant, I believe it totally zapped him. They have not heard the word, "Remission".
I went through ChemoSabe test reports from his MRI, Scans, bone marrow biopsy and such and found a report on his immune system. It was registering pretty low. So, I asked if there was a problem. Our transplant nurse advised his immune system levels would be low throughout the rest of his life. It will go lower during his treatment sessions. Sooooooooooooooooo..... I will have to advise his immediate family that the kissing and hugging is taboo. While he was sick last week I didn't kiss him myself.... This life we live as MM patients and caregivers.... Gotta love it, can't leave it.
He is still holding his levels up on the WBC, RBC, Platelets and CRP. His meds are three pills a day now, but soon to change on Monday. Again.... he has done extremely well.
I will keep you posted, beginning next week... Be prepared for tests!!! Aunt Nomey wanted to know what stem cells were while we were visiting. Raise your hand if you know.
Good afternoon and Love --- Kathy
Definition: the act or words of one that blesses b: approval , encouragement; a thing conducive to happiness or welfare.
We were blessed to be able to get out of town and escape to such wonderful people in Illinois. We were pampered, entertained, fed and consoled. I am ready to go back.
ChemoSabe came through all his tests last week just fine. He gets the port and begins chemo on Monday, 03/30. We are ready. This should be a drop in the bucket.
He recovered from his Walking Pneumonia, but I truly believe it was because we got out of town. He took off work on Friday and Monday and that made a world of difference. He would have kept on ticking like that damn ole battery if we had stayed in town. Big E was sick, too, but was 100% better when we got back.
I miss my mom terribly. If I could just touch her hand or smell her one more time for just a few seconds. But, then, I would need to do it again and again. I think of her each day. This week started out bad with her on my mind because when ChemoSabe did the blessing at dinner the other night he asked for God to take care of her. I haven't been able to think of her without crying since.
My sister-in-law, if you remember, had stroke like symptoms when my mom first had hers in October. It resulted in a brain tumor that was cancerous. From then to now, her cancer has spread and she is Stage IV. She had radiation that burned her throat which now makes it difficult for her to eat. The chemo was first too strong and it made her kidneys go into failure. That was going on when mom broke her hip.
She has since improved, but was placed back in the hospital this week with the same problems with her kidneys. She has had six pints of blood since yesterday. My little brother has been beside himself with grief, with losing my mom and he feels now he is losing his wife. He, too, is a wheelchair victim from a disease called Reiters. He has been that way sinc 1997.
We are all going out to his house this weekend to clear some land where my mom's mobile home use to be. It is just within a few hundred feet of his home. So, her death has been a major toll for him going out his door every day and seeing her deck and wheelchair ramps, with a home.
ChemoSabe is looking and feeling very well. He doesn't know what to do for me with my emotional times. I do find he helps more around the house when I am crying.... Have I found a tool? ha.
I have dreaded this next round of chemo. Maybe it is just the inconvenience. Just when you can plan to do anything at any time, then the daily Infusion visits and labs return. You can't really plan a day trip on the bikes, or even to work in the yard.
Roger and Ruthie got through the second transplant and are already back home. Just like any transplant, I believe it totally zapped him. They have not heard the word, "Remission".
I went through ChemoSabe test reports from his MRI, Scans, bone marrow biopsy and such and found a report on his immune system. It was registering pretty low. So, I asked if there was a problem. Our transplant nurse advised his immune system levels would be low throughout the rest of his life. It will go lower during his treatment sessions. Sooooooooooooooooo..... I will have to advise his immediate family that the kissing and hugging is taboo. While he was sick last week I didn't kiss him myself.... This life we live as MM patients and caregivers.... Gotta love it, can't leave it.
He is still holding his levels up on the WBC, RBC, Platelets and CRP. His meds are three pills a day now, but soon to change on Monday. Again.... he has done extremely well.
I will keep you posted, beginning next week... Be prepared for tests!!! Aunt Nomey wanted to know what stem cells were while we were visiting. Raise your hand if you know.
Good afternoon and Love --- Kathy
Monday, March 9, 2009
Durable -- Word for the Day -- Monday, March 9, 2009
Durable
DEFINITION: (adjective) long lasting.
Don't we think we are Durable? We make ourselves believe we can withstand anything that comes our way... I have not been durable the last few months. I have always been very strong and independent, but with my mom passing, I have been broken and bent and hurt in ways I have never felt before. The least little thing brings her back to me and I break.
We are planning a quick trip to St. Louis this weekend to just get away. We really wanted to bike it up, but it looks like the weather will not allow that. Then, ChemoSabe has been sick the last week. Today they are testing him for walking pneumonia. The last vacation time we planned to St. Louis he had something called a triple bypass.... ha
We have been quite busy with work and things around the house. Had a little birthday party on Friday night for myself.... Well, ChemoSabe did, but I did the cooking. What does that tell ya?
Testing, bone marrow biopsy and other things start happening again on March 18. Our OKC friends have been back for two weeks and we haven't gotten out to see them. ChemoSabe thinks they will bypass the chemo this time, but LOL...
He is still bald and loving it. His hair just didn't come back as fast this time and in a couple of weeks it will all be gone again.
Not much else going on. I apologize for not writing sooner.... I will do better.
Good afternoon and Love -- Pepper.
DEFINITION: (adjective) long lasting.
Don't we think we are Durable? We make ourselves believe we can withstand anything that comes our way... I have not been durable the last few months. I have always been very strong and independent, but with my mom passing, I have been broken and bent and hurt in ways I have never felt before. The least little thing brings her back to me and I break.
We are planning a quick trip to St. Louis this weekend to just get away. We really wanted to bike it up, but it looks like the weather will not allow that. Then, ChemoSabe has been sick the last week. Today they are testing him for walking pneumonia. The last vacation time we planned to St. Louis he had something called a triple bypass.... ha
We have been quite busy with work and things around the house. Had a little birthday party on Friday night for myself.... Well, ChemoSabe did, but I did the cooking. What does that tell ya?
Testing, bone marrow biopsy and other things start happening again on March 18. Our OKC friends have been back for two weeks and we haven't gotten out to see them. ChemoSabe thinks they will bypass the chemo this time, but LOL...
He is still bald and loving it. His hair just didn't come back as fast this time and in a couple of weeks it will all be gone again.
Not much else going on. I apologize for not writing sooner.... I will do better.
Good afternoon and Love -- Pepper.
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