I don't know where to begin.
Let's see the Candida... I decided to see a nutritionist. I made an appointment with our local People's Pharmacy who are reknown for helping people with this very thing... and all with stuff that does the body good. Well, before I had the appointment, a small miracle happened! Keith was talking with a friend from church and asked her how pharmacy school was going. She said it's not... I've become a nutritionist. WOW! And she added she was able to keep her dad off of dialysis for a year. Well you can figure it out... I cancelled my appointment and made one with sweet Nikki.
She did this test on me to see how well I absorb nutrients. It's called the biomarkers of health. She placed little metal plates on my hand and foot (kind of like when you get an EKG). It tested my Phase Angle... which reflects cell membane integrity and over-all cellular health and function. For my age my marker should have been >6.6 and mine was 5.7... Not bad, eh? And then it tested my Intracellular water... this increases cell health. For my age it should be >54.2 and mine was 51.7.
Also, she took me off all grains and sugar! Actually its not been that hard. I did, one day, decide to eat one of the Christmas goodies I got... a little peanut butter cake with a chocolate drop. Well, I got tell ya, I've not been that high since... oh well, let's not go there! I was dizzy, sick to my stomach, shaking. YUK! I have eaten very little pieces of candy (like my mom's wonderful Christmas fudge) with out effect. But I guess I have to lay off anything that's bigger than my thumbnail!
I'm taking Whey Powder, a probiotic that had 4 billion live enzymes (but now I'm down to only about 250 million because the 4 billion are too expensive), IgG2000DF, a hemoglobin... I make this into a shake with Almond milk every morning. It really is quite tasty. This is all to get my gut back into shape and eliminate the Candida.
I think I feel better... but right now I can't tell because I've got an awful cold. And of course, I had to take more antibiotics for it. I can't win! But at the end of the day, God is still good!
December 23, 2006
Applying for Disability
My father-in-law kept telling my husband that I could take early retirement from the State if I was disabled. What this would mean for me is that my health insurance will be paid for for the rest of my life! So we checked into it and it's true. So I'm applying for early retirement. Target retirement date is 2/28/07. And I'm also applying for Social Security Disability. The catch is I can't be making more than $900/month in order to be approved for SSD. So Keith and I are biting the bullet and as soon as I get approved for my state retirement, I'm quitting work.
Since after Thanksgiving, I've been trying to work 40 hours a week. And this is my 3rd infection since then. And this cold I have now is a doozy and here it is the night before Christmas eve and I feel pretty lousy.
When I went to see my dr. for this infection we were talking about me ... well I was talking about me working 30 hours a week and he said I should be working NO hours a week. He said he couldn't believe I had worked this long. But, with a bone marrow transplant being talked about and having to pay for all my cancer treatment, I had no idea I had any other choice. And frankly I'm just plain worn out. So pray that God will let me find favor with the state retirement and especially with SSD. We have an appointment on Dec. 29th.
Merry Christmas to you all. May the Lord bless all you put your hand to in 2007! I can't express enough the support you all have been to me!
Since after Thanksgiving, I've been trying to work 40 hours a week. And this is my 3rd infection since then. And this cold I have now is a doozy and here it is the night before Christmas eve and I feel pretty lousy.
When I went to see my dr. for this infection we were talking about me ... well I was talking about me working 30 hours a week and he said I should be working NO hours a week. He said he couldn't believe I had worked this long. But, with a bone marrow transplant being talked about and having to pay for all my cancer treatment, I had no idea I had any other choice. And frankly I'm just plain worn out. So pray that God will let me find favor with the state retirement and especially with SSD. We have an appointment on Dec. 29th.
Merry Christmas to you all. May the Lord bless all you put your hand to in 2007! I can't express enough the support you all have been to me!
December 02, 2006
Candida... My acupuncturist finally was right
I stopped the Amoxcillian yesterday and did not wake up last night in a frenzy of wild itching. However, when I called the good docs at MD Anderson, Dr. Vu told me I had Candida in my throat. And I bet I've got it all over my body. Here is some information about Candida.
Ok, let's skip to the chase... here is one guy's list:
The Third Stage of Candida Symptoms may involve MENTAL and BEHAVIORAL RESPONSES: Inability to concentrate, not being able to read or follow a television program or carry on a hobby, serious forgetfulness, memory loss, mental confusion, not being able to think of the words to say something, switching around of words and letters when trying to speak and/or write something,
Uh, I think that might apply to me.
Oh my read this... I've been on a sweet tooth rage now for weeks:
Yeast may overgrow when antibiotics, medications, drugs, birth control and hormone pills, and steroids (such as Prednisone and Cortisone) are taken. These medications tend to kill the good bacteria in addition to the bad bacteria that caused the present illness. This allows the yeast to reign freely until our Immune System beats it back once again. (note from me: What immune system?)
The typical modern diet facilitates the problem. Refined sugars and high starch/carbohydrate foods give the yeast exactly what it needs to flourish. (This is why we add sugar or honey to the yeast when we make bread! This is also why so many people CRAVE sweets and breads just as badly as an alcoholic craves alcohol--the yeast is screaming for fuel to keep ever growing!)
Another factor allowing yeast overgrowth is STRESS. Stress depresses or even shuts down the Immune System. It is noted that following a great stress (such as the loss of a mate) a person is more than likely to become seriously ill within the next year, as a result of that stress on the body.
I do believe I'm under a little stress. And since I've been on anti-biotics now for 18 months... well my body is probably a ripe ground for Candida.
To be continued...
Ok, let's skip to the chase... here is one guy's list:
The Third Stage of Candida Symptoms may involve MENTAL and BEHAVIORAL RESPONSES: Inability to concentrate, not being able to read or follow a television program or carry on a hobby, serious forgetfulness, memory loss, mental confusion, not being able to think of the words to say something, switching around of words and letters when trying to speak and/or write something,
Uh, I think that might apply to me.
Oh my read this... I've been on a sweet tooth rage now for weeks:
Yeast may overgrow when antibiotics, medications, drugs, birth control and hormone pills, and steroids (such as Prednisone and Cortisone) are taken. These medications tend to kill the good bacteria in addition to the bad bacteria that caused the present illness. This allows the yeast to reign freely until our Immune System beats it back once again. (note from me: What immune system?)
The typical modern diet facilitates the problem. Refined sugars and high starch/carbohydrate foods give the yeast exactly what it needs to flourish. (This is why we add sugar or honey to the yeast when we make bread! This is also why so many people CRAVE sweets and breads just as badly as an alcoholic craves alcohol--the yeast is screaming for fuel to keep ever growing!)
Another factor allowing yeast overgrowth is STRESS. Stress depresses or even shuts down the Immune System. It is noted that following a great stress (such as the loss of a mate) a person is more than likely to become seriously ill within the next year, as a result of that stress on the body.
I do believe I'm under a little stress. And since I've been on anti-biotics now for 18 months... well my body is probably a ripe ground for Candida.
To be continued...
December 01, 2006
Amoxicillian
I think I'm allergic to amoxicillian now. Since starting it on Monday for some odd infection, I've awaken at 3am, 4am and 5am each day this week (week of 11/27) itching horribly!
November 27, 2006
Date Log: 11/27/06: Good News & so-so News
Yea! Dr. Duvic was happy w/my obvious improvement of my skin. The bumps/pebbles/sugar pops are less. I'm whiter... and this white woman can dance!
However, I don't know what my numbers are... the numbers that really tell how the cancer is or isn't. I did a blood draw (well really about 8 vials) to see what my numbers will be... the cd4/cd8 & sezary cell count. When I go back on 12/11 I'll know if the BCX1777 is affecting the bad T-cells too. I had one small lymph node, the others are still insignificant. Which means this drug must be working.
These tests can really tell the story of where my cancer is, BECAUSE I can't. Why do I say this? Because I'm running a 100 degree fever, which is really high for me and my throat is spotted with puss and my b/p was 192/92. Now when I had my B/P taken at work the other day it was 120/78. White coat syndrome? Who knows.
But back to me being sick. This is not good because this is what will put you in the hospital. So even though my skin is looking better I'm still very auto immuned compromised. So I'm back on antibiotics which makes me more immune compromised which ... well you get the idea.
so good news and bad news. Pray that I will find a way to build up my immune system ... a way that won't cost me money having to go to a herbalist and spending lots of money on herbs. It always seems it costs money to be healthy naturally. Ok, I don't think I'm making much sense but thanks for listening to me.
However, I don't know what my numbers are... the numbers that really tell how the cancer is or isn't. I did a blood draw (well really about 8 vials) to see what my numbers will be... the cd4/cd8 & sezary cell count. When I go back on 12/11 I'll know if the BCX1777 is affecting the bad T-cells too. I had one small lymph node, the others are still insignificant. Which means this drug must be working.
These tests can really tell the story of where my cancer is, BECAUSE I can't. Why do I say this? Because I'm running a 100 degree fever, which is really high for me and my throat is spotted with puss and my b/p was 192/92. Now when I had my B/P taken at work the other day it was 120/78. White coat syndrome? Who knows.
But back to me being sick. This is not good because this is what will put you in the hospital. So even though my skin is looking better I'm still very auto immuned compromised. So I'm back on antibiotics which makes me more immune compromised which ... well you get the idea.
so good news and bad news. Pray that I will find a way to build up my immune system ... a way that won't cost me money having to go to a herbalist and spending lots of money on herbs. It always seems it costs money to be healthy naturally. Ok, I don't think I'm making much sense but thanks for listening to me.
November 23, 2006
Oh I forgot 2 things - A God Moment
See my note on Thrush. When I went to the drs. after the weekend when my thrush was healed...I stuck my tongue out at Dr. Vu and she said "Your thrush is gone. Wow that medicine works good." I told her I had used it ONE time. Funny thing is that Bill Johnson had a "word" about the "inside" of the mouth. My lips still have thrush! So I've been using the medicine!
On Saturday night when I went to the meeting, my neck was killing me from my accident (see on my way to Houston). It hadn't hurt like this at all. So I got prayed for. When I went to see my Chiropractor on Tuesday and he was adjusting me I asked, "So how does my neck and back feel?" He gave me thumbs up and I said, "So does my neck and back and feel like it did before my accident?" He said, "Yea, it does!" Another touched body. Wish this stupid old MF/Sezary cell would respond as quickly.
Ok, this Texas girl is off to make Northern turkey dressing that only she will eat. But the family (my in-laws) will say several times thru the meal, "Its good Renee, it's just like eating dessert though." I put raisins and pecans in my white bread dressing! What can I say? My mom grew up in Detroit and my dad, though born and raised in Texas, had good taste buds. I must say my mother-in-law does make the only and best cornbread dressing I've ever eaten. Not that I've eaten a lot, I try and avoid it... you know Luby's dressing with the yellow gravy with eggs in it? EWWWWWWW weeee, can't abide by that. Ok, now I'll ask forgiveness of all of you eat that stuff!
On Saturday night when I went to the meeting, my neck was killing me from my accident (see on my way to Houston). It hadn't hurt like this at all. So I got prayed for. When I went to see my Chiropractor on Tuesday and he was adjusting me I asked, "So how does my neck and back feel?" He gave me thumbs up and I said, "So does my neck and back and feel like it did before my accident?" He said, "Yea, it does!" Another touched body. Wish this stupid old MF/Sezary cell would respond as quickly.
Ok, this Texas girl is off to make Northern turkey dressing that only she will eat. But the family (my in-laws) will say several times thru the meal, "Its good Renee, it's just like eating dessert though." I put raisins and pecans in my white bread dressing! What can I say? My mom grew up in Detroit and my dad, though born and raised in Texas, had good taste buds. I must say my mother-in-law does make the only and best cornbread dressing I've ever eaten. Not that I've eaten a lot, I try and avoid it... you know Luby's dressing with the yellow gravy with eggs in it? EWWWWWWW weeee, can't abide by that. Ok, now I'll ask forgiveness of all of you eat that stuff!
Date Log: 11/23/06... Wow a month from my last update
Ok, what has happened this last month.
1. I was seeing some real clearing on my feet. But that has seem to gone away.
2. Good news: My lymph nodes have gone down or are gone completely.
3. Bad news? My blood work doesn't show much improvement. May know better this coming Monday (the 27th)
4. I've got pebbly skin. Yes, my thighs are thick and look like they have sugar pops, my rendition, or pebbles, Dr. D's rendition, stuck under my skin. This makes it difficult to sit and squat... which since I've moved my office this last week, I'll be squatting a lot to put all my books in place, etc. Dr. D suggested we wait 4 weeks to see how the "pebble" situation plays out. She thinks it's an reaction to being OFF the Targretin! Weird, huh?
5. I'm feeling a lot of stress. It's effecting my memory. Not sure if it's the meds, or just that there are circumstances that are playing into this affect. At least I don't feel depressed on this drug. Which is one reason why I will fight to stay on it,
6. I am seeing real skin, cleared skin on my arms.
7. My internal temperature seems to have gone whacko again. But then again it might be that it is the low 70's in Austin, cold for me, but not cold enough for "real" people to turn on the heat.
8. I do seem to be itching more, but then again it comes an goes. For instance today I woke up and my arms were itching very badly. I took my Gabapentin and Atarax and I'm beginning to calm down.
9. Because of the cold, no moisture in the air, I've been taking that combo. That may be adding to my spaciness.
10. I'm probably not putting lotion on enough times during the day. But it just feel awful. Cold, wet, and makes me itch until it dries.
11. My feet/ankles are very swollen this week, but I attribute that to the fact that I moved offices and was on my feet about 8 hours a day this week.
12. I still can not stand to be in clothes for more than 8 hours. 100% polyester (or silk when I can afford it) pjs are the only thing that feel comfortable.
13. I wore my nice pj bottoms to work on Monday and Tuesday (though Tuesday's pj weren't 100% polyester and I could tell at the end of the day.) That seemed to help a lot. I need to find other pjs that don't look so "pjish".
14. The cuts on my feet had almost cleared but today I have several cuts... wonder if its from being on my feet on all week with the moving? Makes sense.
15. The first week of November I slept HORRIBLY! Made my hours at work suffer. Or it might have been the 2nd week. But that has ended, thank you JESUS! Wonder if it might be related to menopause/period stuff? Need to keep an eye on that. And, sorry, I guess that is more information than you needed to know, right?
I'll let you all know what Dr. Duvic says on Monday.
1. I was seeing some real clearing on my feet. But that has seem to gone away.
2. Good news: My lymph nodes have gone down or are gone completely.
3. Bad news? My blood work doesn't show much improvement. May know better this coming Monday (the 27th)
4. I've got pebbly skin. Yes, my thighs are thick and look like they have sugar pops, my rendition, or pebbles, Dr. D's rendition, stuck under my skin. This makes it difficult to sit and squat... which since I've moved my office this last week, I'll be squatting a lot to put all my books in place, etc. Dr. D suggested we wait 4 weeks to see how the "pebble" situation plays out. She thinks it's an reaction to being OFF the Targretin! Weird, huh?
5. I'm feeling a lot of stress. It's effecting my memory. Not sure if it's the meds, or just that there are circumstances that are playing into this affect. At least I don't feel depressed on this drug. Which is one reason why I will fight to stay on it,
6. I am seeing real skin, cleared skin on my arms.
7. My internal temperature seems to have gone whacko again. But then again it might be that it is the low 70's in Austin, cold for me, but not cold enough for "real" people to turn on the heat.
8. I do seem to be itching more, but then again it comes an goes. For instance today I woke up and my arms were itching very badly. I took my Gabapentin and Atarax and I'm beginning to calm down.
9. Because of the cold, no moisture in the air, I've been taking that combo. That may be adding to my spaciness.
10. I'm probably not putting lotion on enough times during the day. But it just feel awful. Cold, wet, and makes me itch until it dries.
11. My feet/ankles are very swollen this week, but I attribute that to the fact that I moved offices and was on my feet about 8 hours a day this week.
12. I still can not stand to be in clothes for more than 8 hours. 100% polyester (or silk when I can afford it) pjs are the only thing that feel comfortable.
13. I wore my nice pj bottoms to work on Monday and Tuesday (though Tuesday's pj weren't 100% polyester and I could tell at the end of the day.) That seemed to help a lot. I need to find other pjs that don't look so "pjish".
14. The cuts on my feet had almost cleared but today I have several cuts... wonder if its from being on my feet on all week with the moving? Makes sense.
15. The first week of November I slept HORRIBLY! Made my hours at work suffer. Or it might have been the 2nd week. But that has ended, thank you JESUS! Wonder if it might be related to menopause/period stuff? Need to keep an eye on that. And, sorry, I guess that is more information than you needed to know, right?
I'll let you all know what Dr. Duvic says on Monday.
October 28, 2006
No More Thrush
Yes, you heard me correctly. Tonight my mom and I went to a church service which was conducted by Bill Johnson http://www.ibethel.org/. This man has been anointed by God for healing. He spoke about how the Kingdom of God is at hand. That means just that... it's right here ... at hand. You may be familiar with verses that say that which is bound on earth is bound in heaven, that which is loosed on earth is loosed in heaven. The actual translation is that which is loosed on earth has ALREADY been loosed in heaven and that which is bound on earth has ALREADY been bound in heaven. So cancer is bound in heaven, it doesn't exist in heaven, so because of that I have the power thru Jesus Christ to bind it on earth.
But back to my thrush. After Bill spoke he had words of knowledge (things shown to him by God). He asked if anyone had sores in their mouth. Well, thrush countedm right? So I raised my hand. He was rattling off a lot of other problems: back aches, broken legs, eye problems, etc. People were raising their hands left and right. They counted 138 people who felt a difference in their pain, ability to move, etc.
He then had people around us pray for us. My tongue began tingling and then it didn't feel so thick. The roof of my mouth felt like when you burn it... like a bunch of skin had come off the roof of my mouth, but it didn't hurt.
I had my mom look at my tongue and it wasn't thick with white gunk!!!
And my mom has been having this "bubble" when she looked straight out of her right eye. An 11th grader prayed for her. And the bubble went away. It was amazing. She said she always thought this "stuff", being prayed for and healings were just a hoax. I think God changed her mind!
When we went to eat, she was closing her left eye and kept shaking her head and I kept sticking out my tongue and feeling the roof of my mouth. I wonder what the people around us thought??
I'm praying for all of you!
Oh yea, a lady in front of me prayed for me without me telling her anything. She prayed that the dryness would go away and my oil glands would work! Wow, if I wasn't dry then I'd probably not itch... ya think???
But back to my thrush. After Bill spoke he had words of knowledge (things shown to him by God). He asked if anyone had sores in their mouth. Well, thrush countedm right? So I raised my hand. He was rattling off a lot of other problems: back aches, broken legs, eye problems, etc. People were raising their hands left and right. They counted 138 people who felt a difference in their pain, ability to move, etc.
He then had people around us pray for us. My tongue began tingling and then it didn't feel so thick. The roof of my mouth felt like when you burn it... like a bunch of skin had come off the roof of my mouth, but it didn't hurt.
I had my mom look at my tongue and it wasn't thick with white gunk!!!
And my mom has been having this "bubble" when she looked straight out of her right eye. An 11th grader prayed for her. And the bubble went away. It was amazing. She said she always thought this "stuff", being prayed for and healings were just a hoax. I think God changed her mind!
When we went to eat, she was closing her left eye and kept shaking her head and I kept sticking out my tongue and feeling the roof of my mouth. I wonder what the people around us thought??
I'm praying for all of you!
Oh yea, a lady in front of me prayed for me without me telling her anything. She prayed that the dryness would go away and my oil glands would work! Wow, if I wasn't dry then I'd probably not itch... ya think???
October 26, 2006
Real Skin and Thrush
I can see real skin... on my feet. It's amazing. It's pink, it's smooth, you can actually see veins thru it ;). I think the BCX-1777 is working! As it turns out I'm on the highest dose, which is 300 mg. a day (that's 3-100mg pills each).
Today at my dr.'s appt., Dr. Vu took a light and checked my eyes and my mouth. I said I don't ever remember that being part of my assessment. When she checked my mouth, she did a double take and had me stick out my tongue, lift up my tongue, stick it out again, lift it again and proclaimed "You have thrush!" Wow that explains a lot of things. Like why good things taste so weird. And maybe when I did my mystery shop (if you want to know more about mystery shops go here http://www.volition.com/mysteryUSA2.html and don't EVER pay for a list of mystery shopping companies) anyway, when I did my mystery shop the other night, I said the coke was flat. Maybe it wasn't??? Drats, I hope I didn't make an incorrect accusation! I can't believe I have thrush. When I asked Dr. Vu why??? Why??? She said in her sweet voice "Honey, you are autoimmune compromised." Oh yea. I forget sometimes because I feel better. But I'm not contagious! But it's still good to remember I still need to take care of myself!
I'm still itching pretty bad, badly, awful, a lot... what ever the correct English is. But since I'm seeing such good results I'm just hanging in there. [If you read my report about getting hit by a car and that I was somehow not itching... well I realized that I had not taken my BCX-1777 from Sunday morning until Tuesday afternoon. So this drug does make me itch more.] But I'm going to keep hanging on because I'm seeing results even if its just by the tips of my fingers... since I still don't have any nails.
I do have these funky hard cuticle kinda of gross things where nails go, but they are short. Oh, I found out it takes THREE years for your nails to grow back. So do I count from when I started getting treatment? 17 months ago? Or when I started getting something like nails back? 10, 9, 8 months ago? I don't know. I just would like to have a nail so I could pick up my tongue depressor (my scratcher for those of you who are new here) when I drop it on the ground, which I tend to do a lot. I have to step on it and kinda get the end to pop up to pick it up or use my keys, or a credit card or anything to get under it. One day I dropped it and tried for about a minute to pick it up and finally the guy behind reached down and handed it to me. Thank you. Sometimes when I ask people to help me and I comment I don't have any fingernails, they will say "Oh I don't have any fingernails, either" and I'll say NO I don't have ANY fingernails. I mean I don't, ok?? Only I hope I say it nicer than that!
I was told this week I was a little short with one of my co-workers. I felt awful! I'm so glad she told me because, just because I don't feel good is no excuse to be short or rude. So for those of you who know me, please if I act impatient with you please tell me! God's grace is abundant and I need to tap into His grace. It's there for me!
Well that is all I have to report. I see Dr. Duvic on Monday and she will make the true proclamation about my progress!
Oh, how could I forget!! I wore my red high heel shoes today and NO BAND-AIDs!!! Now if I would just quit scratching my feet and not open up any more craters!
Today at my dr.'s appt., Dr. Vu took a light and checked my eyes and my mouth. I said I don't ever remember that being part of my assessment. When she checked my mouth, she did a double take and had me stick out my tongue, lift up my tongue, stick it out again, lift it again and proclaimed "You have thrush!" Wow that explains a lot of things. Like why good things taste so weird. And maybe when I did my mystery shop (if you want to know more about mystery shops go here http://www.volition.com/mysteryUSA2.html and don't EVER pay for a list of mystery shopping companies) anyway, when I did my mystery shop the other night, I said the coke was flat. Maybe it wasn't??? Drats, I hope I didn't make an incorrect accusation! I can't believe I have thrush. When I asked Dr. Vu why??? Why??? She said in her sweet voice "Honey, you are autoimmune compromised." Oh yea. I forget sometimes because I feel better. But I'm not contagious! But it's still good to remember I still need to take care of myself!
I'm still itching pretty bad, badly, awful, a lot... what ever the correct English is. But since I'm seeing such good results I'm just hanging in there. [If you read my report about getting hit by a car and that I was somehow not itching... well I realized that I had not taken my BCX-1777 from Sunday morning until Tuesday afternoon. So this drug does make me itch more.] But I'm going to keep hanging on because I'm seeing results even if its just by the tips of my fingers... since I still don't have any nails.
I do have these funky hard cuticle kinda of gross things where nails go, but they are short. Oh, I found out it takes THREE years for your nails to grow back. So do I count from when I started getting treatment? 17 months ago? Or when I started getting something like nails back? 10, 9, 8 months ago? I don't know. I just would like to have a nail so I could pick up my tongue depressor (my scratcher for those of you who are new here) when I drop it on the ground, which I tend to do a lot. I have to step on it and kinda get the end to pop up to pick it up or use my keys, or a credit card or anything to get under it. One day I dropped it and tried for about a minute to pick it up and finally the guy behind reached down and handed it to me. Thank you. Sometimes when I ask people to help me and I comment I don't have any fingernails, they will say "Oh I don't have any fingernails, either" and I'll say NO I don't have ANY fingernails. I mean I don't, ok?? Only I hope I say it nicer than that!
I was told this week I was a little short with one of my co-workers. I felt awful! I'm so glad she told me because, just because I don't feel good is no excuse to be short or rude. So for those of you who know me, please if I act impatient with you please tell me! God's grace is abundant and I need to tap into His grace. It's there for me!
Well that is all I have to report. I see Dr. Duvic on Monday and she will make the true proclamation about my progress!
Oh, how could I forget!! I wore my red high heel shoes today and NO BAND-AIDs!!! Now if I would just quit scratching my feet and not open up any more craters!
October 17, 2006
Date Log: 10/16/06 While on my way to Houston...
Well, dear friends, I said I'd report what the good drs. said about my response to the BCX-1777. Well I never made it to Houston. Instead I spent my morning dealing with that! See the picture! I had just left Austin city limits and was at a red light in Manor, (pronounced may-nor... not like man-or) TX. As the light changed green, I heard a siren. I looked in my rear-view mirror, saw a black truck behind me and then on the cross street a police car screaming thru the intersection. So I stayed stopped even though the light was green, again checking behind me to make sure the guy (Frank was his name) in the truck behind me was "tracking" with me! And as I found out later, Frank's son is a policeman with Manor police department, so Frank was the "required" 10-12 feet behind me and he was staying put! Suddenly, BAM! I jumped out of my car and this young kid comes racing up to me cussing wildly. He kept saying the "s" word and exclaiming "I'm going to jail." This young man, let's just call him D ;), was driving a Runner 4x4 with the huge black grill in front and jacked up pretty high. The pickup truck behind me had been pushed into me when D hit him. Frank told me they had just picked up several bags of cement. I think that might have saved both of us... the bags of cement took the impact for us. Frank's truck bed was smashed in about 6 feet and pushed down so the bed of the truck was dragging. As I said, the 4x4 runner was jacked up pretty high. I think if D had hit me, I would have his truck in my backseat. So God was already watching over us.
And Houston? Well Houston was flooding so bad they weren't running bus service for the children to go to school. So it worked out, kinda sorta of, good that I didn't venture down there.
D suggested we move off the highway. Frank said no, let's stay to wait for the police however D said, "No I did it, I hit ya'll (that Texan for you for those of you in the North). So I got back in my car with the bumper hanging by a thread (the picture was taken after the bumper was removed and the trunk was tied down with a coat hanger!) and moved over into a parking lot.
A fire truck came and checked on us. As I was looking around I was counting six cars and 6 men and me. As it turned out the next lane over also had a 3 car pileup too! It was pouring down rain; we're all on our cells phones... I guess you can't get electrical shock doing that, and D kept saying "s" I'm going to jail. Two policemen show up and they figure out we have 2 different wrecks happening in the same way. A young man in a Toyota pickup truck hit the 2 cars next to me. One was a rental car (and YES the guy did take all the full insurance on it... which is a good thing because there back window was totally gone and it was smashed pretty bad, but not as bad as mine.) the front car in that wreck was a Volvo. It had a little scratch on the bumper! Where were the cameras, we needed to make a commercial then and there! It is the safer vehicle!
So the 2 policeman are talking and one policeman said, Ok you take the north lane with my dad and I'll take the south lane. His dad, Frank, was in the car that was pushed into me! So the policeman asked for our driver's licensees and insurance card. I'm standing next to D and the policeman asked for his insurance and license. He handed him his insurance card and said he didn't have his license on him. By this time it's pouring down rain... my tennis shoes are still wet as I write this 12 hours later. The police tell us we can go wait in our cars until he is ready to get our statements.
I'm sitting in my car talking on the phone with my boss, when I see them put handcuffs on D and start patting him down. I think this is a little odd. Next thing I see, a policeman has stepped in the bed of D's pickup truck and has opened that metal box a lot of pickup trucks have. Next I see him pull out a gun. A big gun. No, not like a rifle, but as a policeman told me later a 9mm Glock! I'm not really shocked, this is Texas after all. Next the policeman is holding up one of those gallon Ziploc baggie filled with Marijuana! I think to myself, oh yea, you're going to jail. I believe, even in Texas Glocks are illegal unless you are FBI. Feel free to correct me if I'm wrong. You know the funny thing about the Glock... I love to listen to murder mysteries while driving back and forth from Austin to Houston, and just the other day I asked a cop at MD Anderson, "Is that a Glock?" Because I really wanted to see one. Turned out it was his Tazer. We in Austin know a lot about Tazers! A bit later, I see a policeman standing next to one of those huge coolers from D's truck that just so happens to be filled with ice cold beer. The cop is pouring out all the beer. As I walk by one spews all over his pants!
My neck starts hurting so I grab my Advil usually reserved for my cut feet and down 3 with my water bottle. Then I think well maybe some of these other guys need some Advil. So I start passing out Advil. One guy from the south lane wreck, takes 2 and grabs my water bottle and drinks down. My how a car wreck can bring folks together. The other 2 guys in that lane decline my offer and my water bottle, thank heavens! I go over to the Frank and offer him some Advil and his companion. He takes 2 and tells me 3 months ago he had open heart surgery and currently has stitches in his neck down his back. So I offer to pray for him, which he lets me.
Finally a cop brings me back my driver's license and insurance card. I get information on D's insurance which just so happens to be Progressive! When I was talking to them later that day I said "You know your reputation has preceded you!"
Ok, get this... the insurance agent tells me we can't do anything about my car until he can talk to D. Which, he continues, he understands is in jail. But, the insurance agent has talked to D's mom and she assures him that D will be out of jail soon. Ok, the guy has drugs, he's carrying a gun, he has cooler (big cooler) filled with beer and now he's lying to his mama???
Tuesday, October 17, 2006:
So today my mom takes me to Houston, tomorrow I deal with the insurance (hopefully if D has given his statement yet) probably all day. Wow what a start to my week.
Oh yea, I'm not real sore this morning. But ever once in a while I feel a really sharp pain in my neck. Maybe it's just this all is a pain in my neck! But, hey my itching is better. Not sure if that was due to the fact that I fell asleep with my wraps on for 3 hours or I was so distracted about all the above!
P.S. for some reason I can't get the picture of my smashed car to show up. But trust me, it's smashed - ;) - R
October 15, 2006
Date Log: 10/15/06: Will the Itching ever stop?
One of the side effects, well, really the ONLY side effect that has been reported with the BCX-1777 is swelling. Last night I looked down and someone had inserted a medium size lemon under my skin right at the ankle!! My husband said it looked like I had sprained my ankle. My left ankle wasn't swollen like the right. I could actually see a little of my ankle bone... enough probably to have caused some gossip 100 years ago! They are better today.
My feet, on top, are actually white. Well except for the red spots where I have scratched them to death. And the skin looks almost human. I was talking with a friend the other day, facing her and a window. She kept looking at me strangely, then she said, "Renee I think I see some actual skin on your face."
So, I do see changes. Some good changes, but THIS ITCHING! I want to hang in here, but it is not easy. As many of you know, it just exhausts you having to deal with your itching, dryness, flakiness, and all those other "iness"! I'm just plain tired. However, as I can see improvement on my skin, I'm going to stick this out.
Tomorrow, 10/16, I drive to Houston for week 3. I'll let you know what the good doctors say. Please just pray for the itching to stop!!
Oh BTW, some of my smarter colleagues figured out I'm about one in 4 million!
My feet, on top, are actually white. Well except for the red spots where I have scratched them to death. And the skin looks almost human. I was talking with a friend the other day, facing her and a window. She kept looking at me strangely, then she said, "Renee I think I see some actual skin on your face."
So, I do see changes. Some good changes, but THIS ITCHING! I want to hang in here, but it is not easy. As many of you know, it just exhausts you having to deal with your itching, dryness, flakiness, and all those other "iness"! I'm just plain tired. However, as I can see improvement on my skin, I'm going to stick this out.
Tomorrow, 10/16, I drive to Houston for week 3. I'll let you know what the good doctors say. Please just pray for the itching to stop!!
Oh BTW, some of my smarter colleagues figured out I'm about one in 4 million!
October 12, 2006
Date Log 10/12/06: Validation & Day 10
I can now blame my dinginess on a real live medical reason! Chemofog/Chemobrain
I think this counts even though my chemo comes in pill form!
Ways to know you are experiencing chemobrain:
1. You are in the shower shaving your legs. You finish shaving, but being blind, you reach down to make sure you didn't miss any spots. WOW you think my left leg really feels smooth and hair free. Then you feel your right leg and as your hand runs up your leg you feel hair. (yes, I shaved my left leg twice!)
2. You finally make it to the gym. You are feeling good. You've got your tunes going on your MP3 player. Your strutting, excited, you are going to WORK out. As you swing into the bathroom, you pause... you think "I thought the sinks were on the right side, not the left side...?" Then you realize you are in the men's locker room. You slink out... hoping no one noticed!
I think I can tell a difference in my skin. I'm still itching. (Thanks for all the great ideas!) Dr. Tapular said today that people on the BCX1777 do experience itching. But she thinks it's because its breaking up the T-cells. I forgot to ask if once someone is clear does the itching stop??? And they said this drug had no side affects! HELLO? Itching is one the main reasons why we are here! I think sometimes if I didn't itch I wouldn't even know I had cancer!!
Ok, this is for all you mathematicians out there. Out 100,000 people only 0.40 have Pautrier-type abscesses (something found in my last biopsy), only 0.15 have Sezary Cell Syndrome and only 0.45 have MF. So if you, if you... if you what? Multiply this and divide by 100,000? Something like that... anyway, I'm one in whatever that number would be! I feel sooooooooo special!
Definition of Chemobrain
Chemobrain: Cognitive dysfunction associated with chemotherapy. It is thought that chemotherapy may cause memory loss, attention loss, and other problems that make it difficult for patients to think clearly. Also known as chemo-brain, chemo-fog, and chemotherapy-related cognitive dysfunction.I think this counts even though my chemo comes in pill form!
Ways to know you are experiencing chemobrain:
1. You are in the shower shaving your legs. You finish shaving, but being blind, you reach down to make sure you didn't miss any spots. WOW you think my left leg really feels smooth and hair free. Then you feel your right leg and as your hand runs up your leg you feel hair. (yes, I shaved my left leg twice!)
2. You finally make it to the gym. You are feeling good. You've got your tunes going on your MP3 player. Your strutting, excited, you are going to WORK out. As you swing into the bathroom, you pause... you think "I thought the sinks were on the right side, not the left side...?" Then you realize you are in the men's locker room. You slink out... hoping no one noticed!
I think I can tell a difference in my skin. I'm still itching. (Thanks for all the great ideas!) Dr. Tapular said today that people on the BCX1777 do experience itching. But she thinks it's because its breaking up the T-cells. I forgot to ask if once someone is clear does the itching stop??? And they said this drug had no side affects! HELLO? Itching is one the main reasons why we are here! I think sometimes if I didn't itch I wouldn't even know I had cancer!!
I'm one in a ????
Ok, this is for all you mathematicians out there. Out 100,000 people only 0.40 have Pautrier-type abscesses (something found in my last biopsy), only 0.15 have Sezary Cell Syndrome and only 0.45 have MF. So if you, if you... if you what? Multiply this and divide by 100,000? Something like that... anyway, I'm one in whatever that number would be! I feel sooooooooo special!
October 11, 2006
Symptoms of Hypothyroidism
I just looked up the symptoms of hypothyroidism and here is the list:
Symptoms of Hypothyroidism
Fatigue
Weakness
Weight gain or increased difficulty losing weight
Coarse, dry hair
Dry, rough pale skin
Hair loss
Cold intolerance (can't tolerate the cold like those around you)
Muscle cramps and frequent muscle aches
Constipation
Depression
Irritability
Memory loss
Abnormal menstrual cycles
Decreased libido
So this explains some things going on with me. Dry, rough (PALE??) skin. Ok I don't fit that bill. Memory loss!!! Yea, I have a medical condition to blame my memory loss on! Weight gain, another bonus...it's not those hot fudge sundaes that's making me fat, it's my hypothyroidism (just kidding).
Anyway, I'm praying this is the cause of my itching. Today it is AWFUL! I can barely think or work.
Symptoms of Hypothyroidism
Fatigue
Weakness
Weight gain or increased difficulty losing weight
Coarse, dry hair
Dry, rough pale skin
Hair loss
Cold intolerance (can't tolerate the cold like those around you)
Muscle cramps and frequent muscle aches
Constipation
Depression
Irritability
Memory loss
Abnormal menstrual cycles
Decreased libido
So this explains some things going on with me. Dry, rough (PALE??) skin. Ok I don't fit that bill. Memory loss!!! Yea, I have a medical condition to blame my memory loss on! Weight gain, another bonus...it's not those hot fudge sundaes that's making me fat, it's my hypothyroidism (just kidding).
Anyway, I'm praying this is the cause of my itching. Today it is AWFUL! I can barely think or work.
October 09, 2006
DateLog: 10/9/06: Drug Study - Day 8
Here are some numbers for you:
My CD4's (those are the bad cd cells) went from 526 on 8/3/06 to 83.1 on 9/15/06 to 1523 on 10/2/06.
My cd4/cd8 ratio (you want it to be zero) went from 12.91 on 8/3/06 to 25.97 on 9/15/06 50.56 on 10/2/06.
My last dose of Targretin was 9/6/06. Targretin does work, obviously, for me at least.
My visit today went well. Dr. Tuplar, who has been checking me from the start of my drug study was very pleased. She thought I looked less red already. She marked me as having only about 26% involvement. However, 2 hours later (well ok, not quite that long, but all you Dr. Duvic patients out there you know what I mean!) when Dr. Duvic came in I was all red again! But, she did say she could see a difference in my skin already. Although she changed my involvement to about 65%.
I'm sorry to say, though, the itching feels worse, not better! But maybe it is true as my sweet little niece tells her patients who have just delivered a large baby... "Honey it itches because those stitches are healing!" So I'm just healing... though there is no baby and no stitches! Oh, here's something... I was just looking at the sheet that Dr. Duvic fills out... and my thyroid (TSH) was 7.16. I think when you TSH is high you are drier. I was 0.79 on 9/15/06. So I'm back on my Synthroid to bring my TSH back down! I hope that's all it is. I'm get so weary from scratching and itching all the live long day. And the Lord knows how much my itching drives everyone else nuts!
My CD4's (those are the bad cd cells) went from 526 on 8/3/06 to 83.1 on 9/15/06 to 1523 on 10/2/06.
My cd4/cd8 ratio (you want it to be zero) went from 12.91 on 8/3/06 to 25.97 on 9/15/06 50.56 on 10/2/06.
My last dose of Targretin was 9/6/06. Targretin does work, obviously, for me at least.
My visit today went well. Dr. Tuplar, who has been checking me from the start of my drug study was very pleased. She thought I looked less red already. She marked me as having only about 26% involvement. However, 2 hours later (well ok, not quite that long, but all you Dr. Duvic patients out there you know what I mean!) when Dr. Duvic came in I was all red again! But, she did say she could see a difference in my skin already. Although she changed my involvement to about 65%.
I'm sorry to say, though, the itching feels worse, not better! But maybe it is true as my sweet little niece tells her patients who have just delivered a large baby... "Honey it itches because those stitches are healing!" So I'm just healing... though there is no baby and no stitches! Oh, here's something... I was just looking at the sheet that Dr. Duvic fills out... and my thyroid (TSH) was 7.16. I think when you TSH is high you are drier. I was 0.79 on 9/15/06. So I'm back on my Synthroid to bring my TSH back down! I hope that's all it is. I'm get so weary from scratching and itching all the live long day. And the Lord knows how much my itching drives everyone else nuts!
Date Log 10/9/06: God Moments II
As I put paper to pencil, or in this case, keyboard to blog; I don't want you to think "poor Renee" or "oh Renee :(" as I share the following. I'll share and then I'll explain my purpose.
Dr. Duvic wrote that MF was one of the most disfiguring diseases known to man. Well I can attest to that. In the last 2 months I've been called Keith's (my husband who is, granted, 3 years younger than me) mother by someone who was just guessing and offered the senior discount which was for 55 and older; and this:
My oldest son, Luke, who is slightly autistic, was holding hands with me yesterday. When I grabbed his hand, he went, "ewww" and looked at my hand. I said, "Does this bother you?" He replied, "Yes, I will pray that you will not be such a revolting woman."
I share this with you, especially those of you with family who have this cancer, that this cancer isn't always "detected" by weight loss, hair loss, or other visible changes we've come to think of as "that person looks as if they have/had cancer." However, it can in some ways be more devasting, because it is there, hidden in a way. If you know human nature you know that we don't really "look" at each other. However, I'm constantly reminded I have a strange disease. If it's not someone offering me the senior discount; it's someone asking me "Where did you get that tan?" (not such a bad question).
I've spoken with others who have this cancer and a common comment is "Oh you look fine, you must not be sick anymore!" Good news is that most people die "with MF" rather than "from MF". However, we still have cancer. A cancer that can't be cured with conventional medicine. A cancer that can't be stopped or arrested by cutting something out and having 8 rounds of chemo. It is time-consuming, ever present, costly, irritating, frustrating, vexing... ok, you get the idea. But, I say and again I say God is STILL GOOD. He is GOOD all the time. And it is only by His grace that I'm able to live and endure!
But, here is the really good news! When Keith was holding my hand this morning, he said "I think your hand feels smoother." The prayers of a child go straight to the heart of God and He listens. I for one am glad my son is praying "that I won't be such a revolting woman." I know God listens!!!
Dr. Duvic wrote that MF was one of the most disfiguring diseases known to man. Well I can attest to that. In the last 2 months I've been called Keith's (my husband who is, granted, 3 years younger than me) mother by someone who was just guessing and offered the senior discount which was for 55 and older; and this:
My oldest son, Luke, who is slightly autistic, was holding hands with me yesterday. When I grabbed his hand, he went, "ewww" and looked at my hand. I said, "Does this bother you?" He replied, "Yes, I will pray that you will not be such a revolting woman."
I share this with you, especially those of you with family who have this cancer, that this cancer isn't always "detected" by weight loss, hair loss, or other visible changes we've come to think of as "that person looks as if they have/had cancer." However, it can in some ways be more devasting, because it is there, hidden in a way. If you know human nature you know that we don't really "look" at each other. However, I'm constantly reminded I have a strange disease. If it's not someone offering me the senior discount; it's someone asking me "Where did you get that tan?" (not such a bad question).
I've spoken with others who have this cancer and a common comment is "Oh you look fine, you must not be sick anymore!" Good news is that most people die "with MF" rather than "from MF". However, we still have cancer. A cancer that can't be cured with conventional medicine. A cancer that can't be stopped or arrested by cutting something out and having 8 rounds of chemo. It is time-consuming, ever present, costly, irritating, frustrating, vexing... ok, you get the idea. But, I say and again I say God is STILL GOOD. He is GOOD all the time. And it is only by His grace that I'm able to live and endure!
But, here is the really good news! When Keith was holding my hand this morning, he said "I think your hand feels smoother." The prayers of a child go straight to the heart of God and He listens. I for one am glad my son is praying "that I won't be such a revolting woman." I know God listens!!!
October 06, 2006
DateLog: 10/6/06: Drug Study - Day 5
What a week. As I tried to wake up this morning, I realized that I had been "up" for the task earlier this week. And now that I'm home I crashed. Being a very high energy person, it's hard for me to be in touch with my body. I just go and go and go. I used to be able to do this with no problem. But not anymore!
How am I feeling? I'm very very dry. I'm flaking like crazy! I've been off my oral Targretin for 4 weeks now... and only 5 days of the new drug. Spending the last 4 days in Houston, I'm praying the dryness is from the showers. We have a water softener at home and I can tell when the salt is low because I'll itch more. So 4 showers in semi-hard water really took a toll on my body.
Last night, after I did my wraps, I did my best to cover my body in lotion (my usual routine). Never being limber, there is always this square (some name I can't think of: square with two sides equal...) on my back about 6 inches wide at the top and about 4 inches at the bottom that I can never get. You can actually see it distinctly ... there is such a noticeable difference between where lotion is applied and where it's not. As I laid down in my 100% polyester pj's I noticed my back felt like a million needles piercing my back. I "willed" my husband to wake up. He finally did and I had him "lotion" me up. It helped but not much.
I've not slept well since probably Sunday night. Not sure if that's due to the dryness or the drugs!
So to recap:
I'm more dry... water or drug?
I'm itching more... water, drug, or anti-biotics I'm on?
Not been sleeping... itching or the drug?
I'm almost finished with my anti-biotics, I'm home back with my water softener. I'll keep you updated as changes occur. Just pray none of this is the result of the new drug!
Also, I'm getting more cuts on my feet. Some of it is MY fault because I scratch, but I think its also because of the dryness. My skin is so tight. For instance I can't really straighten my hands because the skin is so tight. Works well for typing, but it scares small children since they look like a witches hand in a children's book. What are they doing drawing such scary looking witches in children's book anyway?
Thanks for listening.
How am I feeling? I'm very very dry. I'm flaking like crazy! I've been off my oral Targretin for 4 weeks now... and only 5 days of the new drug. Spending the last 4 days in Houston, I'm praying the dryness is from the showers. We have a water softener at home and I can tell when the salt is low because I'll itch more. So 4 showers in semi-hard water really took a toll on my body.
Last night, after I did my wraps, I did my best to cover my body in lotion (my usual routine). Never being limber, there is always this square (some name I can't think of: square with two sides equal...) on my back about 6 inches wide at the top and about 4 inches at the bottom that I can never get. You can actually see it distinctly ... there is such a noticeable difference between where lotion is applied and where it's not. As I laid down in my 100% polyester pj's I noticed my back felt like a million needles piercing my back. I "willed" my husband to wake up. He finally did and I had him "lotion" me up. It helped but not much.
I've not slept well since probably Sunday night. Not sure if that's due to the dryness or the drugs!
So to recap:
I'm more dry... water or drug?
I'm itching more... water, drug, or anti-biotics I'm on?
Not been sleeping... itching or the drug?
I'm almost finished with my anti-biotics, I'm home back with my water softener. I'll keep you updated as changes occur. Just pray none of this is the result of the new drug!
Also, I'm getting more cuts on my feet. Some of it is MY fault because I scratch, but I think its also because of the dryness. My skin is so tight. For instance I can't really straighten my hands because the skin is so tight. Works well for typing, but it scares small children since they look like a witches hand in a children's book. What are they doing drawing such scary looking witches in children's book anyway?
Thanks for listening.
October 05, 2006
DateLog: 10/5/06: Deep Thoughts - Toothbrushes
The Toothbrush
If you get sick, like I have these past 2 weeks, when do you throw out your toothbrush. Do you throw it out when you realize you are sick? Do you keep it until your antibiotics kick in? When do they kick in? Do you start a new toothbrush after you know your antibiotics have kicked in, then do you throw that away when you finish your antibiotics (you DO finish all your antibiotics, don't you??!) Then when you get sick again, do you start all over, even if you've not finished the first referenced antibiotics?
What about those little travel toothbrush holders? Do you throw them away? What if you used that toothbrush only when you were well? What if you weren't sure if you were well or not... because how does it feel to feel well? Can you just wash out the travel toothbrush holder with Band-Aid Hurt-Free Antispetic Wash?
And then there is that whole thing about touching the toothpaste tube with the contaminated toothbrush. Will pouring alcohol in the lid and then placing it on the tube (upside down of course!) sterilize the tube? And then how do you put the toothpaste on the brush without touching the tube? Do you do a leaf motion, dragging the toothpaste along and then ending mid-air? As you do when decorating a cake? Or do you do the flower motion, squeezing lots of toothpaste on the brush and then lightly pushing down and then up? So many questions, so little time!
Comments and thoughts welcomed!
P.S. My cholesterol was 136 and my triglycerides were 88. Now really how can I be sick??
If you get sick, like I have these past 2 weeks, when do you throw out your toothbrush. Do you throw it out when you realize you are sick? Do you keep it until your antibiotics kick in? When do they kick in? Do you start a new toothbrush after you know your antibiotics have kicked in, then do you throw that away when you finish your antibiotics (you DO finish all your antibiotics, don't you??!) Then when you get sick again, do you start all over, even if you've not finished the first referenced antibiotics?
What about those little travel toothbrush holders? Do you throw them away? What if you used that toothbrush only when you were well? What if you weren't sure if you were well or not... because how does it feel to feel well? Can you just wash out the travel toothbrush holder with Band-Aid Hurt-Free Antispetic Wash?
And then there is that whole thing about touching the toothpaste tube with the contaminated toothbrush. Will pouring alcohol in the lid and then placing it on the tube (upside down of course!) sterilize the tube? And then how do you put the toothpaste on the brush without touching the tube? Do you do a leaf motion, dragging the toothpaste along and then ending mid-air? As you do when decorating a cake? Or do you do the flower motion, squeezing lots of toothpaste on the brush and then lightly pushing down and then up? So many questions, so little time!
Comments and thoughts welcomed!
P.S. My cholesterol was 136 and my triglycerides were 88. Now really how can I be sick??
October 04, 2006
Date Log: 10/3/06: Week 1 of New Drug Study
28 Vials!
On day one of the new drug study I was to have oh probably about 12 vials taken. But, wait, as I was getting ready for my first blood draw, Carol, the drug study coordinator, asked if they could take extra blood for another drug study. This one would just use my blood to begin testing some new drug they are working on. "Sure, why not?" I reply. I'm always willing to be a pin cushion in the name of science. So that added about 7 vials. Then, because I was not feeling really well, Dr. Duvic decided they needed to run a blood culture on me. That was another 5 or so vials. Then she decided she wanted a flow cymtery on me too... so that was another 6 vials. I think by 2pm that day I had given 18 vials. I began feeling sort of light headed since Keith and I were waiting to eat later that day. I grabbed some graham crackers and water and felt better.
The next day, I went in for my 11:30 a.m. blood draw and dose. They then told me that Dr. Duvic wanted a biopsy. When I asked Linda, who draws my blood, where?, she said in a room. In a room??? No, where on my body! So now I have had 30 vials of blood drawn, on 3 anti-biotics due to 2 infections and one just because and a hunk of my skin taken away.
Oh yes, I forgot, I got to collect all my urine for 24 hours. Anyone ever need to know where the nice bathrooms are at Clark Clinic (MD Anderson) just ask!
So far I can't tell anything. There is some really good news... I''m not pregnant! Whew... just one of those viles, I mean vials they took. So good to have medical confirmation that I'm not pregnant! The other good news, though not quite as exciting, is that I'm on the highest dose of the study medication. I take 3 pills all at once at about 11:30 a.m. everyday. This is wonderful, wonderful news because this means when I drive down on Mondays and Thursdays I don't have to be at MDA until 11:30 a.m. It is 2 hours and 48 minutes from our door to MDA. So just pray I can get out our door by 8:00 a.m. But as my feet are getting better, it only took me about 15 minutes today to get them ready for shoe wear rather than the 45 minutes I've been spending. So hopefully by next week I'll be down to about 10 minutes and that's it! Also, this $30.00 a week for bandaids is getting a little ridiculous. (I use the blister band aids, which really work good when they stay on, but because my body is enriched with lotions for the past year, things like band aids won't stick. So while I'm putting on one band aid, I'm trying to hold the one I just put on on (got that?) . Sometimes I feel like a dog chasing their tail. One falls off, I stop to fix it, the other falls off... yes it's a comedy of errors!
So I'm still itching and flaking... actually I'm itching, I think, more... but that could be because of the anti-biotics I'm on. Just a couple more days and I'll be off all but one! Not much else to report today, but check back weekly for updates if you wish!
On day one of the new drug study I was to have oh probably about 12 vials taken. But, wait, as I was getting ready for my first blood draw, Carol, the drug study coordinator, asked if they could take extra blood for another drug study. This one would just use my blood to begin testing some new drug they are working on. "Sure, why not?" I reply. I'm always willing to be a pin cushion in the name of science. So that added about 7 vials. Then, because I was not feeling really well, Dr. Duvic decided they needed to run a blood culture on me. That was another 5 or so vials. Then she decided she wanted a flow cymtery on me too... so that was another 6 vials. I think by 2pm that day I had given 18 vials. I began feeling sort of light headed since Keith and I were waiting to eat later that day. I grabbed some graham crackers and water and felt better.
The next day, I went in for my 11:30 a.m. blood draw and dose. They then told me that Dr. Duvic wanted a biopsy. When I asked Linda, who draws my blood, where?, she said in a room. In a room??? No, where on my body! So now I have had 30 vials of blood drawn, on 3 anti-biotics due to 2 infections and one just because and a hunk of my skin taken away.
Oh yes, I forgot, I got to collect all my urine for 24 hours. Anyone ever need to know where the nice bathrooms are at Clark Clinic (MD Anderson) just ask!
So far I can't tell anything. There is some really good news... I''m not pregnant! Whew... just one of those viles, I mean vials they took. So good to have medical confirmation that I'm not pregnant! The other good news, though not quite as exciting, is that I'm on the highest dose of the study medication. I take 3 pills all at once at about 11:30 a.m. everyday. This is wonderful, wonderful news because this means when I drive down on Mondays and Thursdays I don't have to be at MDA until 11:30 a.m. It is 2 hours and 48 minutes from our door to MDA. So just pray I can get out our door by 8:00 a.m. But as my feet are getting better, it only took me about 15 minutes today to get them ready for shoe wear rather than the 45 minutes I've been spending. So hopefully by next week I'll be down to about 10 minutes and that's it! Also, this $30.00 a week for bandaids is getting a little ridiculous. (I use the blister band aids, which really work good when they stay on, but because my body is enriched with lotions for the past year, things like band aids won't stick. So while I'm putting on one band aid, I'm trying to hold the one I just put on on (got that?) . Sometimes I feel like a dog chasing their tail. One falls off, I stop to fix it, the other falls off... yes it's a comedy of errors!
So I'm still itching and flaking... actually I'm itching, I think, more... but that could be because of the anti-biotics I'm on. Just a couple more days and I'll be off all but one! Not much else to report today, but check back weekly for updates if you wish!
September 30, 2006
DateLog: 9/30/06: God Moments
While walking my new sweet dog, Madi, I walk by the First Baptist Church of Pflugerville. One day while walking by the church I felt like the Lord said, "Stop and have them pray for you!" Now I don't know how you know when God is speaking to you, but for me my heart pounds really fast. I continue walking, headed for the new Dazzle Coffee Kiosk in downtown Pflugerville, hoping it was only Madi tugging on the leash that was causing this rapid heart beat! On the way back, having forgotten my little "God" moment, I walked back the same way rather than taking an alternate route! Ha-ha! As I approached the church this time, tears pricked the back of my eyes... actually tears started rolling down my cheeks. But have you noticed how all novels always say "tears pricked the back of my/her/his eyes"? I just thought I'd continue to practice my writing skills! Ok, back to the story. So I'm not quite to the church yet, so I still have time. Time to bargain with God. "Ok, God if there is ONE person in the parking lot, then I will stop." See I'm pretty righteous, I didn't ask for 10 people, I knew that wasn't going to happen (just kidding... about the righteousness part). As I approached the parking lot, looking furtively around, I was relieved to find the parking lot free of anything human! So I walked on by, feeling ok for about 3 steps, then as the Holy Spirit began slowing my steps down. I finally gave up and sighing heavily turned around and went back to the church office. I approached the door, opened it, keeping Madi on the leash and said, "Uh, hi, uh, I think I'm suppose to, uh, ask you to pray for me." Well they welcomed me with open arms. It turns out they have a prayer room and they asked me to fill out a prayer sheet stating why I was in need of prayer and they would post it. I've already received one "prayergram" from someone praying for me.
When God asks us to do something that is hard, embarrassing, and/or difficult for us we never know what He is up too. I was blessed by this church and they even thanked ME for allowing them to pray for me. I have no idea what God wanted to happen with that interaction, or what He wants to do in me... but it is a privilege to be part of God's plan.
Keith found this quote in a book called, "Conversations Journal". It resonated with me and want to share it with you.
When suffering does not
destroy you, even though you
have been to the edge of the
abyss, you know something that
you cannot know in any other way.
Someone else is sustaining you.
You are indeed living by a life not
your own. Or as I love to say,
"Your life is not about you." It is
henceforth, most truly, about God.
And you are merely a "free sample"
of what God has always been
doing. - Quote from Richard Rohr
When God asks us to do something that is hard, embarrassing, and/or difficult for us we never know what He is up too. I was blessed by this church and they even thanked ME for allowing them to pray for me. I have no idea what God wanted to happen with that interaction, or what He wants to do in me... but it is a privilege to be part of God's plan.
Keith found this quote in a book called, "Conversations Journal". It resonated with me and want to share it with you.
When suffering does not
destroy you, even though you
have been to the edge of the
abyss, you know something that
you cannot know in any other way.
Someone else is sustaining you.
You are indeed living by a life not
your own. Or as I love to say,
"Your life is not about you." It is
henceforth, most truly, about God.
And you are merely a "free sample"
of what God has always been
doing. - Quote from Richard Rohr
September 26, 2006
DateLog: 9/26/06: A new chapter
I just wanted to let you know that this coming Monday, October 2 I'll be entering a drug study at MD Anderson. The drug, called BCX17777-C-04-105. It is a single dose/day of Forodesine Hydrochloride. There has been some good success with drug, especially for Sezary Cell Syndrome patients. Here is the description BTWw, the coordinator said I tell you about this, but of course there will be things I won't be able to share since this is a drug study.) anyway, Forodesine hydrochloride is designed to block an enzyme in T-cells, causing them to die. T-cells being the malignant cell in CTCL is the only white blood cell that is affected. So far there have been no side affects, or so they tell me.
To prepare for this I'm off my 4 Targretin per day and no photopheresis. I have to say, I'm on day 20 and my feet that were looking so good, are getting real thick skin and very big splits! I'm hoping the new drug will kick in quick! I had forgotten all this split hands and feet stuff. Even though I was doing well on my Targretin and photopheresis, it was slow going as many of you know. My skin has gotten so dry and I'm flaking even though I still get to do my wet wraps (Triamcinolone cream all over my body, then wrapped in hot wrung out towels, then wrapped in trash bags, and blanket). I can only go about 8 hours a day w/out wanting to tear my skin off, or at least my clothes. So if you see me in my pj's out and about, the only thing that feels OK, just keep smiling. I'm not sure what the State dress code says about wearing your pjs to work!
I go to Houston for 4 days next week. Day one, I have my blood taken ~6 times: 1st draw, dose (meaning I take my pill), 1 hour later blood draw, then at 2, 4, 6, & 8 hours. Then the next 3 days, blood draw and then dose. Or maybe it's dose then blood draw ;). The coordinator wasn't sure. Builds lots of confidence ;)!
Anyway, I'll do my best to update my blog weekly, if not daily.
Ya'll pray that God will use this once a day pill to kill off all my T-Cells. I keep having visions from the movie Van Helsing, there is a part where Dracula's "children" are killed due to Van Helsing killing Dracula. Anyway, when they die, they explode into this green goo... and that's how I see my T-cells dying when the new drug enters my body!!!!
Because I'm off everything, I've got strep throat this weekend, and feel pretty miserable. I can barely walk because of the cuts on the bottom of my feet. The really sad thing? No matter what I do, they aren't healing. I'm soaking them, I'm wrapping them in Saran wrap, I'm covering them in antibiotics and steriod cream... AND the REALLY SAD THING.... I can't wear my high heels. WAAAAAA. I know you all feel for me.
To prepare for this I'm off my 4 Targretin per day and no photopheresis. I have to say, I'm on day 20 and my feet that were looking so good, are getting real thick skin and very big splits! I'm hoping the new drug will kick in quick! I had forgotten all this split hands and feet stuff. Even though I was doing well on my Targretin and photopheresis, it was slow going as many of you know. My skin has gotten so dry and I'm flaking even though I still get to do my wet wraps (Triamcinolone cream all over my body, then wrapped in hot wrung out towels, then wrapped in trash bags, and blanket). I can only go about 8 hours a day w/out wanting to tear my skin off, or at least my clothes. So if you see me in my pj's out and about, the only thing that feels OK, just keep smiling. I'm not sure what the State dress code says about wearing your pjs to work!
I go to Houston for 4 days next week. Day one, I have my blood taken ~6 times: 1st draw, dose (meaning I take my pill), 1 hour later blood draw, then at 2, 4, 6, & 8 hours. Then the next 3 days, blood draw and then dose. Or maybe it's dose then blood draw ;). The coordinator wasn't sure. Builds lots of confidence ;)!
Anyway, I'll do my best to update my blog weekly, if not daily.
Ya'll pray that God will use this once a day pill to kill off all my T-Cells. I keep having visions from the movie Van Helsing, there is a part where Dracula's "children" are killed due to Van Helsing killing Dracula. Anyway, when they die, they explode into this green goo... and that's how I see my T-cells dying when the new drug enters my body!!!!
Because I'm off everything, I've got strep throat this weekend, and feel pretty miserable. I can barely walk because of the cuts on the bottom of my feet. The really sad thing? No matter what I do, they aren't healing. I'm soaking them, I'm wrapping them in Saran wrap, I'm covering them in antibiotics and steriod cream... AND the REALLY SAD THING.... I can't wear my high heels. WAAAAAA. I know you all feel for me.
August 22, 2006
The NOT SO MERRY Month of May, June, ...
Well, dear friends, to put it succinctly, May was hell. It was like everything that could go wrong with my medication did. I'll explain... Or in those famous words spoken from Inigo in the Princess Bride:
Inigo: Let me explain. No, there is too much. Let me sum up.
So let's sum up!
1. Well it all began the first week in May. I thought I had found the wonder drug, of all wonder drugs. It's called Pregablin or Lycra, and it's supposed to help with itching. And it did!!! My itching was greatly decreased. However, the side effects from this wonder drug far outweigh the fact that I was itching less. The first thing I notice was the inability to see clearly. Everything was blurry... I'd drive right up on cars just to see if I could read the license plate. Since I had new glasses, I thought perhaps that I had lenses gone bad! But then, validation! You know, my friend, who lives in Marble Falls who also has MF (Beverlee)? Well she e-mailed me and told me that the Pregablin was making her eyes blurry. So that mystery was solved. The second thing to happen while taking this drug, which let's be honest was a little harder to determine, it made me very ditzy. And I know many of you are thinking "But, how could you tell Renee?" Just ask my bosses! I was having a difficult time functioning at all, however, I was too ditzy to realize it. But because of the now near blindness overtaking me, it was in the trash with the Pregablin. And soon after the fog began to lift. But, my dear friends and family, it didn't end there.
The next thing that happened during those same 3 weeks was an allergic reaction! An allergic reaction that made me itch. More! Whoopee, I hit the pay load! Dr. Duvic had given me this cream to use in loo of my nightly wraps. It was 2% hydrocortisone mixed in Eucerin, a thick white lotion, which A) Makes it a compound, B) is then not paid by Blue Cross Blue Shield & C) the only place I could get the prescription filled was at People's pharmacy. When I first went into get the prescription filled the young man in the pharmacy told me that it would be $120. I said why so much? He said, because they can only get Eurcien in 4 ounce jars. I told him, no that's not true, you can get them in 1 pound jars, and he was like really? So he looked on-line, and he found that it is true; you could buy them in a 1 pound jar. Duh. We who itch are very intimate with every lotion, cream, petroleum jelly, sizes it comes in, exactly where it sits on the shelves of over 1,000 drugstores world-wide, and the price with and without tax!! So instead of being $120, it only cost me $85 per jar. Wow, were we excited, Keith was excited that we wouldn't have to do my wraps every single night and I was excited ... Well I was going to kind of miss those wraps. I would apply this new compound all over my body at night. I used it a couple of times, but I started flaking again and my skin began feeling drier, and I told Keith I wanted to go back to using the wraps, he said that was fine. My husband being the wonderful man that he is. But one night I was working late and so I thought, I'll just use the cream tonight and I won't have to worry about doing the wraps. Well during the middle of the night I woke myself up itching so bad, I thought was going to go out of my mind. I jumped out of bed like I was lying (laying?) in a bed of red ants, and then I began moving like my friend Kurt Hansen did when he was 3 years old and got in an ant bed! And after my shower that morning, it still didn't stop. I just continued scratching and itching crazily all day long. I could barely stand or sit still. And of course this was a day when I had decided to do training till midnight. And other unfortunate events transpired at work because I was so OUT OF MY MIND! We won't go into that, just suffice to say, I'm glad I still have my job and my mind. When, I got home about one o'clock that night (morning) I woke Keith up and said you have to help me do my wraps and he, of course, groggy and disoriented from being woken up by a crazy woman at 1:30 a.m. joyfully helped me do my wraps. And then I did feel much better (sung to James Brown's "I Feel Good!".) So I decided that I was last time I'd ever use that $85.00 concoction! When I mentioned this to Duvic at my last appointment, Dr. Ransdell piped up and said in only tone that Dr. Ransdell can have (confident, a little smug, all-knowing!) Oh Eucerin has lanolin in it! You've developed an allergic reaction. Ding, Ding, Ding... I just won the jackpot. So no lanolin for me.
But wait there is more! I got sunburned, bad... really bad. But, being half-Italian and only having been sunburned once in my life, it took me several days to figure out what was wrong with me. Light-headed, nauseous, peeling black skin (that one kind of gave it away!). I finally figured out that after my photopheresis treatment I'm already sun-sensitive, then I take a drug called sorlean to make me really sun-sensitive, then I crawl in an enclosed cylinder that emits light close to sun strength! So I learned that I can't have my light treatment the same week as I have my photopheresis treatment. And because I got sunburned and was peeling, I got another MRSA infection. I need to remember that when my feet and hands get so swollen that I can put on my shoes or my wedding ring, and my hair flakes more than normal, then this is a good indication that I am having a MRSA flare-up.
Fortunately, I was going to see my doctor that week. She gave me a drug called Levaquin. And yes, friends, this is a wonder drug. I had Keith fill the prescription that very evening. I took one pill at nine o'clock that night and at 8:30 the next morning I could put on my wedding ring with no problem. And then I noticed that the flaking in my hair had greatly reduced. In fact, one day I'd worn black to work when my hair was flaking so bad it was driving me insane. So I used my lunch hour to go and buy a new outfit. So basically, you can say that the first 3 1/2 weeks of May were a total wash for me. Between allergic reactions, being sunburned, and MRSA infections I wasn't much good for anything.
August 14: I got an e-mail from my friend Beverlee who has MF today and here is what her Dr. said about Levaquin: ...but when I asked about levoquin, he said it was a very powerful, fast acting type used short term. Body can build up an immunity to it, and would not be effective when you need. And, when you need it - you need.
Fortunately things seem to be starting out a little bit better. But the itching seems to be worse. So yesterday (June 27th), as I was standing in the shower just crying and saying, "Why am I still itching all the time. Even waking up in the middle of the night, scratching... I all of sudden picked up the new body wash that I was using. One of the last ingredients was lanolin. Could it be? So as of today, June 28, I've quit using that body wash, but of course, I was having to squeeze hard because I was at the end of the bottle! Figures doesn't it! Today (June 28th), I still seem pretty itchy and dry. So I don't know if it is the light treatment, the body wash or if I'm getting worse, but I have to confess that when I have been itching all day, I'm exhausted by the time I get home and can only think of "I'm ready to go to bed now." Which of course never happens for several hours, because you have to do the wraps. You have to prep your feet... new regiment: slather with Vaseline, wrap in saran wrap, but a sock on it, and go to sleep. I still have cuts on my feet, but at least this procedure ensures two things 1) I don't wake in the middle of the night in pain and 2) the cuts close up faster!
When I was leaving Duvic's office during my June appointment, I mean just as I was walking out the door, she said "I want you to talk to the bone marrow transplant people again about getting the kids tested." This test involves having blood drawn from my 3 children to see if they are a match. The test costs about $150.00/child. If one of them looks like a preliminary match, then MDA will do a more in-depth test which costs $12,500. So I guess we're back on the bone marrow transplant again. Days like this when I'm itching all over, and can't be still and can't concentrate, I wonder wouldn't it be worth it? I just don't know. I ask you that you would join with me in seeking God's thoughts on me having a BMT. Is it the right thing for me to do or not. It's very scary to think about having a transplant, you're semi-isolated for weeks; a hundred days at most, and then you never know when something might flare-up like the nasty
host vs. Graft-disease. At least with the way things are now I know what to expect when I wake up in the morning... That I'm going to be itchy and uncomfortable and WHINEY, but at least its a known commodity, which somehow is more comforting than the unknown. (Shock factor: Renee doesn't want change in her life??... I guess this is the first time ever I've not craved change.)
Update: August 14th: How am I? Let's see...
1. I had another bad reaction to the light treatment. And my derm had it set on the 2nd to lowest setting. That was 2 weeks tomorrow. So I had to go through another 10 days of being miserable.
2. Did I mention that Targretin the "chemotherapy in a pill" makes you depressed? Lately every time I got to see Duvic, the residents ask me if I'd like to see a psychiatrist and I tell them I have 38 I can talk too. But I've been really blue and down, especially for me. And then on July 9th it broke. And that is what I told people, "I'm doing so much better ... Something just broke on Sunday." 2 weeks later a friend at church came up to me and said, "Renee, I wanted to call you and see how you did after we prayed for you." Prayed for me? When did she pray for me? I racked my brain, I stood there with a dumb look on my face. She said, "You know 2 Sundays ago... July 9th!" See even when we don't even know or are aware, God is GOOD. He is GOOD ALL THE TIME!
On Monday, August 20th, I was just so down. I couldn't stop crying. Part of the reason was I was itching horribly. Keith said he was going to post a prayer request to the church. Well I never got the notice which I do via e-mail. However, I began to feel much better and my crying ceased. I asked when I got home if he got people to pray for me and he said he had sent out the e-mail. God is so good. Even when I didn't know anyone was praying, I still received His grace and mercy
Ok back to my list:
3. A guy in Houston thought I was Keith's mother. Now talk about depressing. Seriously, it was so ludicrous it was funny. I mean have you seen Keith’s graying temples? Sorry, honey, just kidding!!
4. I met another BMT patient of Dr. Duvic. She is having problems too. Not all the time but enough. I asked her if she'd do it all over again... In her eyes she was saying NO!
5. I went to a seminar on BMT. The Dr. presenting was talking about how hard it is to match siblings. He said just because they are your siblings doesn't mean that they will be a match. EXCUSE ME??? I'm waving my hand and say, "but Dr. My Dr. wants me to have my children tested for me?" He says, now this funny... "Well, if you and your husband are very similar, then perhaps they might be a match, but it's is very slim chance." yea, let's see Keith is day and I'm night!!! So no I just can't bring myself to have a BMT right now.
6. I met another lady in Austin who has MF. She's wonderful, encouraging, funny, and a doll, too boot! We both can't wait to get together again soon.
7. Now besides my buddy, Beverlee, I have Kathleen and Angelique. We met for dinner last night, 8/20 and I have to say they are just wonderful people and even though we all are having different symptoms and do different things we still share much in common. Like people saying "You look so good" Ok, that is nice, but then they add cheerfully, "So you must not be sick (have cancer) anymore?"
Sam, my 12 year old, was looking at a picture of me. And he said, "Mom, look you were white there." And said, "Yes, that was before I got sick." And said, "When did you get sick?" Of course this gave his sister the perfect excuse to hit up the side of his head and say, "Dummy, Mom has cancer (you have to drag out the word cancer... can cer... only a 13 year old can do it perfectly).
Ok, we are almost up to date. So I've stopped the light treatments, I might have to go back to using the Nitrogen Mustard (NM) which is now $2,000 per jar and my insurance swears they will not pay for it. But we'll see... I've got a lawyer, some verbiage and a lot of tenacity up my sleeve!
I've been itching a lot. Which as you know makes me exhausted my skin is suddenly looking better. I have lymphocytes in my skin. And somehow we've got to kill those, too, to get me healed, in remission ... Whatever. That's why either the light treatment or the NM does this. But the last couple of days my skin is getting clear places!!! But I'm itching worse. It might be, the itching part, that fact that it is 104 degrees outside and it's so dry. I hope so. As to the clearing, I've been praying lately that I would have Jesus would replace my skin with His.
Ok dear friends and family, I'm going to end with this. A friend at work asked me what a blog was and did she need one. I tried to explain it can be anything you want. You can just talk about whatever... share your thoughts, happenings in life, etc. So here is my compilation over the last couple of months of things I thought were hilarious.
1. I was taking a Turkish cooking class. The Turkish women were talking about learning how to learn English. One sweet girl said I watch TV. I watch Everybody Love Raymond. Then she said, "But there is one phrase the grandfather always uses. And I've looked it up in the dictionary and can't' t find ... (I knew what was coming it is "Holy Crap." After all us American girls quit laughing and wiping the tears from our eyes, we told her not to use that expression!
2. I was in Starbucks the other day and a woman ordered a Tall, decaf, no fat latte with 4 equals. uuuuhhhhhh just think of drinking that!
3. Keith was going east on Parmer and the traffic was really bad. You can take a right on Lamar. People were moving to the far right lane to do just, however, there was that solid line... and as people would cross the solid line, a policeman in an empty lot was just pulling them over by the dozen! So don't cross the solid line.
4. Did you know on Ham Hotpockets, the ingredients say: Ham water pressed and shaped. Does that really mean there is no ham? Just pressed ham water? Gross!
Ok, to sum up:
1. God is good... He's good all the time. So even I've been battling some depression and more itching, I hang on to the promise of Him. Twice when I've been really down, He has stepped in and buoyed my spirit amazingly!
2. I've got some decisions to make. There is a drug study they are doing at MD Anderson and I'm going to talk to Dr. Duvic about it. I need to decide if NM will be the right move.
3. My nails are growing back. They look gross but it marks improvement.
4. My Sezary count was 768 which is below the 1000 needed to diagnose SS (Sezary Syndrome) at this time and represents improvement. And, btw, you need 0 cells to be totally cured of SS!
5. I have met 2 new wonderful ladies with MF. It is so good for us to have a support group. Thank you Kathleen, Beverlee, and Angelique. You make life that much more bearable. What a blessing you all are to me!
And of course all you wonderful friends and family, that read my blog, pray for me and hold me up. I couldn't do this without you.
Thanks for reading and listening to me babble. - Renee
Inigo: Let me explain. No, there is too much. Let me sum up.
So let's sum up!
1. Well it all began the first week in May. I thought I had found the wonder drug, of all wonder drugs. It's called Pregablin or Lycra, and it's supposed to help with itching. And it did!!! My itching was greatly decreased. However, the side effects from this wonder drug far outweigh the fact that I was itching less. The first thing I notice was the inability to see clearly. Everything was blurry... I'd drive right up on cars just to see if I could read the license plate. Since I had new glasses, I thought perhaps that I had lenses gone bad! But then, validation! You know, my friend, who lives in Marble Falls who also has MF (Beverlee)? Well she e-mailed me and told me that the Pregablin was making her eyes blurry. So that mystery was solved. The second thing to happen while taking this drug, which let's be honest was a little harder to determine, it made me very ditzy. And I know many of you are thinking "But, how could you tell Renee?" Just ask my bosses! I was having a difficult time functioning at all, however, I was too ditzy to realize it. But because of the now near blindness overtaking me, it was in the trash with the Pregablin. And soon after the fog began to lift. But, my dear friends and family, it didn't end there.
The next thing that happened during those same 3 weeks was an allergic reaction! An allergic reaction that made me itch. More! Whoopee, I hit the pay load! Dr. Duvic had given me this cream to use in loo of my nightly wraps. It was 2% hydrocortisone mixed in Eucerin, a thick white lotion, which A) Makes it a compound, B) is then not paid by Blue Cross Blue Shield & C) the only place I could get the prescription filled was at People's pharmacy. When I first went into get the prescription filled the young man in the pharmacy told me that it would be $120. I said why so much? He said, because they can only get Eurcien in 4 ounce jars. I told him, no that's not true, you can get them in 1 pound jars, and he was like really? So he looked on-line, and he found that it is true; you could buy them in a 1 pound jar. Duh. We who itch are very intimate with every lotion, cream, petroleum jelly, sizes it comes in, exactly where it sits on the shelves of over 1,000 drugstores world-wide, and the price with and without tax!! So instead of being $120, it only cost me $85 per jar. Wow, were we excited, Keith was excited that we wouldn't have to do my wraps every single night and I was excited ... Well I was going to kind of miss those wraps. I would apply this new compound all over my body at night. I used it a couple of times, but I started flaking again and my skin began feeling drier, and I told Keith I wanted to go back to using the wraps, he said that was fine. My husband being the wonderful man that he is. But one night I was working late and so I thought, I'll just use the cream tonight and I won't have to worry about doing the wraps. Well during the middle of the night I woke myself up itching so bad, I thought was going to go out of my mind. I jumped out of bed like I was lying (laying?) in a bed of red ants, and then I began moving like my friend Kurt Hansen did when he was 3 years old and got in an ant bed! And after my shower that morning, it still didn't stop. I just continued scratching and itching crazily all day long. I could barely stand or sit still. And of course this was a day when I had decided to do training till midnight. And other unfortunate events transpired at work because I was so OUT OF MY MIND! We won't go into that, just suffice to say, I'm glad I still have my job and my mind. When, I got home about one o'clock that night (morning) I woke Keith up and said you have to help me do my wraps and he, of course, groggy and disoriented from being woken up by a crazy woman at 1:30 a.m. joyfully helped me do my wraps. And then I did feel much better (sung to James Brown's "I Feel Good!".) So I decided that I was last time I'd ever use that $85.00 concoction! When I mentioned this to Duvic at my last appointment, Dr. Ransdell piped up and said in only tone that Dr. Ransdell can have (confident, a little smug, all-knowing!) Oh Eucerin has lanolin in it! You've developed an allergic reaction. Ding, Ding, Ding... I just won the jackpot. So no lanolin for me.
But wait there is more! I got sunburned, bad... really bad. But, being half-Italian and only having been sunburned once in my life, it took me several days to figure out what was wrong with me. Light-headed, nauseous, peeling black skin (that one kind of gave it away!). I finally figured out that after my photopheresis treatment I'm already sun-sensitive, then I take a drug called sorlean to make me really sun-sensitive, then I crawl in an enclosed cylinder that emits light close to sun strength! So I learned that I can't have my light treatment the same week as I have my photopheresis treatment. And because I got sunburned and was peeling, I got another MRSA infection. I need to remember that when my feet and hands get so swollen that I can put on my shoes or my wedding ring, and my hair flakes more than normal, then this is a good indication that I am having a MRSA flare-up.
Fortunately, I was going to see my doctor that week. She gave me a drug called Levaquin. And yes, friends, this is a wonder drug. I had Keith fill the prescription that very evening. I took one pill at nine o'clock that night and at 8:30 the next morning I could put on my wedding ring with no problem. And then I noticed that the flaking in my hair had greatly reduced. In fact, one day I'd worn black to work when my hair was flaking so bad it was driving me insane. So I used my lunch hour to go and buy a new outfit. So basically, you can say that the first 3 1/2 weeks of May were a total wash for me. Between allergic reactions, being sunburned, and MRSA infections I wasn't much good for anything.
August 14: I got an e-mail from my friend Beverlee who has MF today and here is what her Dr. said about Levaquin: ...but when I asked about levoquin, he said it was a very powerful, fast acting type used short term. Body can build up an immunity to it, and would not be effective when you need. And, when you need it - you need.
Fortunately things seem to be starting out a little bit better. But the itching seems to be worse. So yesterday (June 27th), as I was standing in the shower just crying and saying, "Why am I still itching all the time. Even waking up in the middle of the night, scratching... I all of sudden picked up the new body wash that I was using. One of the last ingredients was lanolin. Could it be? So as of today, June 28, I've quit using that body wash, but of course, I was having to squeeze hard because I was at the end of the bottle! Figures doesn't it! Today (June 28th), I still seem pretty itchy and dry. So I don't know if it is the light treatment, the body wash or if I'm getting worse, but I have to confess that when I have been itching all day, I'm exhausted by the time I get home and can only think of "I'm ready to go to bed now." Which of course never happens for several hours, because you have to do the wraps. You have to prep your feet... new regiment: slather with Vaseline, wrap in saran wrap, but a sock on it, and go to sleep. I still have cuts on my feet, but at least this procedure ensures two things 1) I don't wake in the middle of the night in pain and 2) the cuts close up faster!
When I was leaving Duvic's office during my June appointment, I mean just as I was walking out the door, she said "I want you to talk to the bone marrow transplant people again about getting the kids tested." This test involves having blood drawn from my 3 children to see if they are a match. The test costs about $150.00/child. If one of them looks like a preliminary match, then MDA will do a more in-depth test which costs $12,500. So I guess we're back on the bone marrow transplant again. Days like this when I'm itching all over, and can't be still and can't concentrate, I wonder wouldn't it be worth it? I just don't know. I ask you that you would join with me in seeking God's thoughts on me having a BMT. Is it the right thing for me to do or not. It's very scary to think about having a transplant, you're semi-isolated for weeks; a hundred days at most, and then you never know when something might flare-up like the nasty
Update: August 14th: How am I? Let's see...
1. I had another bad reaction to the light treatment. And my derm had it set on the 2nd to lowest setting. That was 2 weeks tomorrow. So I had to go through another 10 days of being miserable.
2. Did I mention that Targretin the "chemotherapy in a pill" makes you depressed? Lately every time I got to see Duvic, the residents ask me if I'd like to see a psychiatrist and I tell them I have 38 I can talk too. But I've been really blue and down, especially for me. And then on July 9th it broke. And that is what I told people, "I'm doing so much better ... Something just broke on Sunday." 2 weeks later a friend at church came up to me and said, "Renee, I wanted to call you and see how you did after we prayed for you." Prayed for me? When did she pray for me? I racked my brain, I stood there with a dumb look on my face. She said, "You know 2 Sundays ago... July 9th!" See even when we don't even know or are aware, God is GOOD. He is GOOD ALL THE TIME!
On Monday, August 20th, I was just so down. I couldn't stop crying. Part of the reason was I was itching horribly. Keith said he was going to post a prayer request to the church. Well I never got the notice which I do via e-mail. However, I began to feel much better and my crying ceased. I asked when I got home if he got people to pray for me and he said he had sent out the e-mail. God is so good. Even when I didn't know anyone was praying, I still received His grace and mercy
Ok back to my list:
3. A guy in Houston thought I was Keith's mother. Now talk about depressing. Seriously, it was so ludicrous it was funny. I mean have you seen Keith’s graying temples? Sorry, honey, just kidding!!
4. I met another BMT patient of Dr. Duvic. She is having problems too. Not all the time but enough. I asked her if she'd do it all over again... In her eyes she was saying NO!
5. I went to a seminar on BMT. The Dr. presenting was talking about how hard it is to match siblings. He said just because they are your siblings doesn't mean that they will be a match. EXCUSE ME??? I'm waving my hand and say, "but Dr. My Dr. wants me to have my children tested for me?" He says, now this funny... "Well, if you and your husband are very similar, then perhaps they might be a match, but it's is very slim chance." yea, let's see Keith is day and I'm night!!! So no I just can't bring myself to have a BMT right now.
6. I met another lady in Austin who has MF. She's wonderful, encouraging, funny, and a doll, too boot! We both can't wait to get together again soon.
7. Now besides my buddy, Beverlee, I have Kathleen and Angelique. We met for dinner last night, 8/20 and I have to say they are just wonderful people and even though we all are having different symptoms and do different things we still share much in common. Like people saying "You look so good" Ok, that is nice, but then they add cheerfully, "So you must not be sick (have cancer) anymore?"
Sam, my 12 year old, was looking at a picture of me. And he said, "Mom, look you were white there." And said, "Yes, that was before I got sick." And said, "When did you get sick?" Of course this gave his sister the perfect excuse to hit up the side of his head and say, "Dummy, Mom has cancer (you have to drag out the word cancer... can cer... only a 13 year old can do it perfectly).
Ok, we are almost up to date. So I've stopped the light treatments, I might have to go back to using the Nitrogen Mustard (NM) which is now $2,000 per jar and my insurance swears they will not pay for it. But we'll see... I've got a lawyer, some verbiage and a lot of tenacity up my sleeve!
I've been itching a lot. Which as you know makes me exhausted my skin is suddenly looking better. I have lymphocytes in my skin. And somehow we've got to kill those, too, to get me healed, in remission ... Whatever. That's why either the light treatment or the NM does this. But the last couple of days my skin is getting clear places!!! But I'm itching worse. It might be, the itching part, that fact that it is 104 degrees outside and it's so dry. I hope so. As to the clearing, I've been praying lately that I would have Jesus would replace my skin with His.
Ok dear friends and family, I'm going to end with this. A friend at work asked me what a blog was and did she need one. I tried to explain it can be anything you want. You can just talk about whatever... share your thoughts, happenings in life, etc. So here is my compilation over the last couple of months of things I thought were hilarious.
1. I was taking a Turkish cooking class. The Turkish women were talking about learning how to learn English. One sweet girl said I watch TV. I watch Everybody Love Raymond. Then she said, "But there is one phrase the grandfather always uses. And I've looked it up in the dictionary and can't' t find ... (I knew what was coming it is "Holy Crap." After all us American girls quit laughing and wiping the tears from our eyes, we told her not to use that expression!
2. I was in Starbucks the other day and a woman ordered a Tall, decaf, no fat latte with 4 equals. uuuuhhhhhh just think of drinking that!
3. Keith was going east on Parmer and the traffic was really bad. You can take a right on Lamar. People were moving to the far right lane to do just, however, there was that solid line... and as people would cross the solid line, a policeman in an empty lot was just pulling them over by the dozen! So don't cross the solid line.
4. Did you know on Ham Hotpockets, the ingredients say: Ham water pressed and shaped. Does that really mean there is no ham? Just pressed ham water? Gross!
Ok, to sum up:
1. God is good... He's good all the time. So even I've been battling some depression and more itching, I hang on to the promise of Him. Twice when I've been really down, He has stepped in and buoyed my spirit amazingly!
2. I've got some decisions to make. There is a drug study they are doing at MD Anderson and I'm going to talk to Dr. Duvic about it. I need to decide if NM will be the right move.
3. My nails are growing back. They look gross but it marks improvement.
4. My Sezary count was 768 which is below the 1000 needed to diagnose SS (Sezary Syndrome) at this time and represents improvement. And, btw, you need 0 cells to be totally cured of SS!
5. I have met 2 new wonderful ladies with MF. It is so good for us to have a support group. Thank you Kathleen, Beverlee, and Angelique. You make life that much more bearable. What a blessing you all are to me!
And of course all you wonderful friends and family, that read my blog, pray for me and hold me up. I couldn't do this without you.
Thanks for reading and listening to me babble. - Renee
May 08, 2006
Overly Wired?
Life's Work: Overly Wired? There's a Word for It
By LISA BELKIN
WAS there gridlock before there were automobiles? Was there jet lag before there were airplanes? Who was the first person to say "I Googled it" or "he's cyberstalking me"? At what moment did a "web log" turn into a "blog"?
Language makes things official. Change in the pace of life over the last decade can be measured by change in our vocabulary. We I.M., we get phished, we have PIN's. We HotSync, therefore we are.
Does a phenomenon fully exist until it has a name? Dr. Edward M. Hallowell thinks not, and he knows more than a little about naming a trend into existence. He was the first to name adult attention deficit disorder, or Adult A.D.D., back in 1995, and now he is taking on the rest of modern life in "CrazyBusy: Overstretched, Overbooked and About to Snap! Strategies for Coping in a World Gone A.D.D." (Ballantine Books, 2006). The frenzy of our wired world, he argues, is giving nearly all of us the symptoms of attention deficit disorder. To conquer the enemy, he says, we first need to name it.
So he has come up with the following suggestions, among others:
Screensucking, which he defines as "wasting time engaging with any screen - for instance, computer, video game, television, BlackBerry." He goes on to use his new word in a sentence: "I was supposed to write that article, but instead I spent the whole afternoon screensucking." That concept hits particularly close to home.
EMV or E-Mail Voice. This, Dr. Hallowell writes, is "the unearthly tone a person's voice takes on when he is reading e-mail while talking to you on the telephone." Researchers at M.I.T., he tells us, have developed a program that can electronically measure how engaged people are in a conversation, giving scientific certainty to your suspicion that you are not being listened to.
Bluetooth fairy: a person who walks around with the blinking glow of a Bluetooth headset permanently in one ear.
Frazzing. Defined as "multitasking ineffectively." The term multitasking itself was originally coined to describe what a computer does during the microseconds between keystrokes. Then it came to mean something humans are proud to do. And when we crash (also a computer term) while trying to multitask, we frazz.
Gemmelsmerch. "The force that distracts the mind or steals it away from what it wants to do or ought to be doing." For example, "Accidents along the highway are high in gemmelsmerch, compelling drivers to slow down and gawk. A jackhammer outside your window is high in gemmelsmerch. Getting news that you will be audited by the I.R.S. is high in gemmelsmerch. ... As if covered in a radioactive cloud of the stuff, the world has never been as high in gemmelsmerch as it is today."
These are all good words.
But Dr. Hallowell's list is far from complete. A world transforming itself at an almost cancerous pace requires an exponentially new vocabulary. Coined with the help of some friends -particularly my husband, Bruce Gelb, word maven extraordinaire, and Al Cattabiani, founder of Garagista Records and the best punster I know - here are a few of my own additions:
Spammified: to end up in your spam folder by mistake. This is becoming the new "check is in the mail" excuse for why we don't answer e-mail messages. "I am so sorry, but I only just got your message. It had been spammified."
Cellopain: the jerk who talks loudly and obliviously on his cell phone in a crowd. There are other words for this person, but they are not printable.
Regurgimailer: people who forward to everyone they know everything that lands in their in-boxes. Warnings about techniques that rapists use in parking lots; photos of adorable missing children; heart-warming lists of why women and their friendships are so wonderful; jokes about, well, everything. The fact that most of the items either have been traveling the Internet for years or turn out not to be true, or both, does not stop them. A word to regurgimailers - check Snopes.com before you forward, please.
Reverberon: the kind of e-mail described above, which has been forwarded endlessly and everywhere.
Telamnesia: a condition that restricts you to talking only to people who are on your speed-dial list because you no longer keep phone numbers in your head. For me, this includes my own home, which I misdialed the other day.
Logonorrhea: a related condition that renders you unable to use certain online accounts because you can remember neither your screen name nor your password.
Comments? - Renee
By LISA BELKIN
WAS there gridlock before there were automobiles? Was there jet lag before there were airplanes? Who was the first person to say "I Googled it" or "he's cyberstalking me"? At what moment did a "web log" turn into a "blog"?
Language makes things official. Change in the pace of life over the last decade can be measured by change in our vocabulary. We I.M., we get phished, we have PIN's. We HotSync, therefore we are.
Does a phenomenon fully exist until it has a name? Dr. Edward M. Hallowell thinks not, and he knows more than a little about naming a trend into existence. He was the first to name adult attention deficit disorder, or Adult A.D.D., back in 1995, and now he is taking on the rest of modern life in "CrazyBusy: Overstretched, Overbooked and About to Snap! Strategies for Coping in a World Gone A.D.D." (Ballantine Books, 2006). The frenzy of our wired world, he argues, is giving nearly all of us the symptoms of attention deficit disorder. To conquer the enemy, he says, we first need to name it.
So he has come up with the following suggestions, among others:
Screensucking, which he defines as "wasting time engaging with any screen - for instance, computer, video game, television, BlackBerry." He goes on to use his new word in a sentence: "I was supposed to write that article, but instead I spent the whole afternoon screensucking." That concept hits particularly close to home.
EMV or E-Mail Voice. This, Dr. Hallowell writes, is "the unearthly tone a person's voice takes on when he is reading e-mail while talking to you on the telephone." Researchers at M.I.T., he tells us, have developed a program that can electronically measure how engaged people are in a conversation, giving scientific certainty to your suspicion that you are not being listened to.
Bluetooth fairy: a person who walks around with the blinking glow of a Bluetooth headset permanently in one ear.
Frazzing. Defined as "multitasking ineffectively." The term multitasking itself was originally coined to describe what a computer does during the microseconds between keystrokes. Then it came to mean something humans are proud to do. And when we crash (also a computer term) while trying to multitask, we frazz.
Gemmelsmerch. "The force that distracts the mind or steals it away from what it wants to do or ought to be doing." For example, "Accidents along the highway are high in gemmelsmerch, compelling drivers to slow down and gawk. A jackhammer outside your window is high in gemmelsmerch. Getting news that you will be audited by the I.R.S. is high in gemmelsmerch. ... As if covered in a radioactive cloud of the stuff, the world has never been as high in gemmelsmerch as it is today."
These are all good words.
But Dr. Hallowell's list is far from complete. A world transforming itself at an almost cancerous pace requires an exponentially new vocabulary. Coined with the help of some friends -particularly my husband, Bruce Gelb, word maven extraordinaire, and Al Cattabiani, founder of Garagista Records and the best punster I know - here are a few of my own additions:
Spammified: to end up in your spam folder by mistake. This is becoming the new "check is in the mail" excuse for why we don't answer e-mail messages. "I am so sorry, but I only just got your message. It had been spammified."
Cellopain: the jerk who talks loudly and obliviously on his cell phone in a crowd. There are other words for this person, but they are not printable.
Regurgimailer: people who forward to everyone they know everything that lands in their in-boxes. Warnings about techniques that rapists use in parking lots; photos of adorable missing children; heart-warming lists of why women and their friendships are so wonderful; jokes about, well, everything. The fact that most of the items either have been traveling the Internet for years or turn out not to be true, or both, does not stop them. A word to regurgimailers - check Snopes.com before you forward, please.
Reverberon: the kind of e-mail described above, which has been forwarded endlessly and everywhere.
Telamnesia: a condition that restricts you to talking only to people who are on your speed-dial list because you no longer keep phone numbers in your head. For me, this includes my own home, which I misdialed the other day.
Logonorrhea: a related condition that renders you unable to use certain online accounts because you can remember neither your screen name nor your password.
Comments? - Renee
April 19, 2006
All right an Update at last...
Finally, I am updating my blog. I have been waiting to update my blog, because we got voice recognition software called Dragon Speaking. I am going to be training some of our doctors on the use of this software. So what better way to start learning it then use it to update my blog.
So where did we leave off? Oh yes, the bone marrow transplant... I have to admit, I'm still percolating on that. I actually met the woman who had the first transplant using Dr. Duvic protocol, which is eight weeks of body radiation and two weeks of chemotherapy. This woman has been doing really well. She recently got a case of graft versus host disease. Thus she has had to return to MDAnderson and is doing photopheresis again, for her GV H. D. she told me that she did not regret at all having had the BMT. I also received e-mails from two people on my news group that had had transplants. They both are very happy that they had the BMT. Keith and I still want to wait until next year, before making a decision. The real problem with this cancer, is that it can come back at any time, unless of course the Lord does a complete healing. I'm still trusting him to do this.
I have been doing really well and making great progress. About three weeks ago, Dr. Duvic took me off nitrogen mustard. This was just in the nick of time, because a company called Ovation had just bought the rights to nitrogen mustard. Apparently they buy medications that are used by very small percentage of the population. If I remember correctly, the New York Times article said that only about 5000 people use nitrogen mustard in the United States. As you may remember my insurance refused to pay for it. In fact I was on the phone with both Medco and ERS which is the conglomerate's in charge of state employees. We were doing a conference call. I had Medco on one line and had ERS on the other line at the same time. Anyway they had been giving me the runaround, saying that Medco should be paying for my nitrogen mustard and Medco was saying that ERS would not pay for it. It came down to the fact that ERS would not pay for the nitrogen mustard. I asked if I could have my doctor write a letter and I was told he wouldn't do any good. Don't you just love state government? I then asked if I could write a letter to my congressmen and the woman replied, will of course this is Texas. And then she corrected herself and said, I mean the United States. But good news when I went to see Duvic. She took one look at me after my second day of photopheresis and said let's start you on light treatment. When the resident came back in. I asked him about nitrogen mustard. And if I could get Dr. Duvic to do something to help pay for the cost of the nitrogen mustard. The resident looked at me with a shocked look and say you can't take nitrogen mustard, and the light treatment at the same time, he said this would definitely give me melanoma. Keith and I looked at each other and all that's a good thing to know. And then we left. After I got back from Houston. I made an appointment with my dermatologist to talk to him about starting up my light treatment again. He said, I probably needed to wait a week or two before I would start the treatments to let the nitrogen mustard get out of my system. That really surprised me, because we hadn't been told that either. So I decided to call Duvic, just to make sure how long I needed to wait. I finally got an answer, and it was to wait two weeks. As of today, April 19, I have had nine sessions. I am seeing an incredible improvements in my skin. When I went to see Duvic a couple weeks ago. She made some comment under her breath of that taking me off the nitrogen mustard, because it was irritating my skin. I told her it hadn't been irritating me, but what counted to better I was looking now that I was doing the light treatment. I really feel like God was using her even though she didn't know it. Not only is my skin looking a thousand times better a think of all the money I'm saving by not having to use the nitrogen mustard.
So where did we leave off? Oh yes, the bone marrow transplant... I have to admit, I'm still percolating on that. I actually met the woman who had the first transplant using Dr. Duvic protocol, which is eight weeks of body radiation and two weeks of chemotherapy. This woman has been doing really well. She recently got a case of graft versus host disease. Thus she has had to return to MDAnderson and is doing photopheresis again, for her GV H. D. she told me that she did not regret at all having had the BMT. I also received e-mails from two people on my news group that had had transplants. They both are very happy that they had the BMT. Keith and I still want to wait until next year, before making a decision. The real problem with this cancer, is that it can come back at any time, unless of course the Lord does a complete healing. I'm still trusting him to do this.
I have been doing really well and making great progress. About three weeks ago, Dr. Duvic took me off nitrogen mustard. This was just in the nick of time, because a company called Ovation had just bought the rights to nitrogen mustard. Apparently they buy medications that are used by very small percentage of the population. If I remember correctly, the New York Times article said that only about 5000 people use nitrogen mustard in the United States. As you may remember my insurance refused to pay for it. In fact I was on the phone with both Medco and ERS which is the conglomerate's in charge of state employees. We were doing a conference call. I had Medco on one line and had ERS on the other line at the same time. Anyway they had been giving me the runaround, saying that Medco should be paying for my nitrogen mustard and Medco was saying that ERS would not pay for it. It came down to the fact that ERS would not pay for the nitrogen mustard. I asked if I could have my doctor write a letter and I was told he wouldn't do any good. Don't you just love state government? I then asked if I could write a letter to my congressmen and the woman replied, will of course this is Texas. And then she corrected herself and said, I mean the United States. But good news when I went to see Duvic. She took one look at me after my second day of photopheresis and said let's start you on light treatment. When the resident came back in. I asked him about nitrogen mustard. And if I could get Dr. Duvic to do something to help pay for the cost of the nitrogen mustard. The resident looked at me with a shocked look and say you can't take nitrogen mustard, and the light treatment at the same time, he said this would definitely give me melanoma. Keith and I looked at each other and all that's a good thing to know. And then we left. After I got back from Houston. I made an appointment with my dermatologist to talk to him about starting up my light treatment again. He said, I probably needed to wait a week or two before I would start the treatments to let the nitrogen mustard get out of my system. That really surprised me, because we hadn't been told that either. So I decided to call Duvic, just to make sure how long I needed to wait. I finally got an answer, and it was to wait two weeks. As of today, April 19, I have had nine sessions. I am seeing an incredible improvements in my skin. When I went to see Duvic a couple weeks ago. She made some comment under her breath of that taking me off the nitrogen mustard, because it was irritating my skin. I told her it hadn't been irritating me, but what counted to better I was looking now that I was doing the light treatment. I really feel like God was using her even though she didn't know it. Not only is my skin looking a thousand times better a think of all the money I'm saving by not having to use the nitrogen mustard.
March 24, 2006
I wouldn't do it!
This was Dr. Duvic's comment when asked by her spunky resident Dr. Joy K., well Dr. Duvic would you have a BMT? I think that seals the deal for me! More later if you are reading this.
February 05, 2006
There are 6 more of me!
Can you believe it? Six more in this world like me? The premilnary search for my bone marrow type produced 6 other people.
However, as Keith and talked with the PA (physician assistant) in the photopheresis unit, Beverly (the aforementioned PA) voiced great concern about me having a BMT. Now granted they do see the worse cases otherwise if the receiptent was doing well... well, they'd be well. Got that? The problem is that there is just not enough data at all to make a really informed decision. But, I've got God on my side and I know I can trust Him. I'm trusting that if and when a decision is to be made, He'll give me and Keith and many others: words, advice, encouragement and checks (as in checks in the spirit)!
Meanwhile, at my appointment with Dr. Duvic, Keith and I began feeling like we were back in Biblical times. You see, Dr. Duvic began speaking in parables. We felt like when Jesus says you have ears, but you do not hear. Here is how the conversation went. When Dr. Duvic mentioned that I had my HLA typing (that thing that they do so they know your bone marrow type), I said, yes, I'm really thinking that I don't want to do the BMT. Her reply? "You're in denial." Ok, what does that mean. Then she says, "well you are getting so much better, which is a good time to think about getting a BMT." Then a few minutes later she says, "Well if you don't have to get one then that would be best!" Of course, it was now 6:30 pm, yes another late appointment, and I was too tired to try and figure out what she was saying. So I'm sticking by my last paragraph.
However, as Keith and talked with the PA (physician assistant) in the photopheresis unit, Beverly (the aforementioned PA) voiced great concern about me having a BMT. Now granted they do see the worse cases otherwise if the receiptent was doing well... well, they'd be well. Got that? The problem is that there is just not enough data at all to make a really informed decision. But, I've got God on my side and I know I can trust Him. I'm trusting that if and when a decision is to be made, He'll give me and Keith and many others: words, advice, encouragement and checks (as in checks in the spirit)!
Meanwhile, at my appointment with Dr. Duvic, Keith and I began feeling like we were back in Biblical times. You see, Dr. Duvic began speaking in parables. We felt like when Jesus says you have ears, but you do not hear. Here is how the conversation went. When Dr. Duvic mentioned that I had my HLA typing (that thing that they do so they know your bone marrow type), I said, yes, I'm really thinking that I don't want to do the BMT. Her reply? "You're in denial." Ok, what does that mean. Then she says, "well you are getting so much better, which is a good time to think about getting a BMT." Then a few minutes later she says, "Well if you don't have to get one then that would be best!" Of course, it was now 6:30 pm, yes another late appointment, and I was too tired to try and figure out what she was saying. So I'm sticking by my last paragraph.
January 23, 2006
Will that be Mustard or Mayo with that BMT
Met with Dr. Duvic and the Bone Marrow Team on the 10th and 11th of January. It was not very enlightening! First, Keith and I left
Here are a few exciting things I learned:
- It costs $2500 to have your blood drawn and your HLA typing done (that's what they need to determine a match)
- They take 40 ccs of blood for the HLA
- It costs $12,000 to do a search to find a match
- I'm looking for a MUD... a matched unrelated donor... it's because I'm adopted and unless my children are a match they will have to search the world-wide databases which have a membership of over 10 million [We've not told them yet they have to give 40cc's of blood for mom, but what the hey don't we give blood for our kids everyday?]
- And the cost of the BMT is $500,000.
Fortunately, insurance pays for most of this.
Here is more on what Duvic had to say about the BMT: We won't consider doing one until I'm almost in remission. She had done 11 BMT on patients with MF and one has died. I thought she said 4 had died, but Keith corrected me.
Here are my top 10 reasons for NOT having a BMT:
- 8 weeks of Skin Radiation
- 2 weeks of Chemo (still never got an answer if that was every day, or what)
- The possibility of having to shower 3x a day [I don't even like showering once a day... because it's borrrring]
- Swishing stuff every 2 hours to keep mouth sores at bay [I'm impressed if I brush my teeth once on the weekends... I know too much info]
- Using a collection hat [if you don't know what that is, you probably don't want to]
- Keeping a record fluid intake... i hate having to keep records on myself!
- Have my blood taken every day between 4am and
- Not eating fresh fruits or vegetables
- Learning to flush my central venous catheter (CVC)
- Having a CVC
Two good reasons to have a BMT
- Cured for life as long as everything goes well
- Getting to order my meals every day that I'm in the hospital ... yep that's under the heading: inpatient, self-care activities.
The above is taken from the Blood and Marrow Transplantation Patient Education Manual.
But you know what??? I'm praying, and hope you will too, that God will heal me without the BMT. That HIS bone marrow would infiltrate my body!
Oh one more thing on the good news side: My CD4 cells are down to 794. This is good! Also, I've got a lot more energy and if I just wasn't itching (not as bad, but still an irritant) and if my fingers would quit splitting... why I'd be just peachy keen!
Keep praying and thank you all for standing with me, loving me, praying for me! ~ Renee
January 08, 2006
Dr. Duvic's Notes from 12/7 and the B Word
So I get this note from Dr. Duvic and she says in it that I'm in partial remission. Wow! That was the first time I had heard that! And my CD4 cells have dropped from 4,489 (11/1) to 1,979 (11/16). This is good. You don't want CD4 cells. They are bad cells. So things are looking up, right?
Well, I go to my December 27th appointment and after waiting 4 hours for my 11:30 a.m. appointment, Dr. Duvic rushes in and begins examining me. While she is looking me over, she suddenly says, "Have I asked you about your brothers and sisters?" I think hmmm, why is she asking me that? "No," I say, "and besides, I'm adopted." Then she asks if she's talked to me about a bone marrow transplant. ...You know those commercials where they are showing a scene or something and suddenly you hear a screech and the scene freezes... yea, well, that's what it was like for me.
So, what does this mean? I'm not sure. The Polaroid snapshot is something like this:
Seriously, I'm not taking this lightly at all. But I am weighing a year's worth of treatment vs. who knows how many years.
I met a woman in the waiting room that's been coming for treatment since 1998. It's a lot to think and pray about, and I invite you to pray with me seeking the Lord to give me and my family wisdom if this will be the right thing for me to do. Of course if God just wants to heal me right now, that's fine, too! ;). But the BMT might be His avenue of healing. It's in His hands, I continue to proclaim He is a GOOD God. So I trust whatever happens He's done what's best overall.
So this week I'm meeting a Dr. on the BMT team and the BMT team (and here's some good news, it turns out that the BMT team at MD Anderson and Dr. Duvic have done more transplants world-wide than any other drs.)
I'll try and not wait so long to report back what I learn this week!
Well, I go to my December 27th appointment and after waiting 4 hours for my 11:30 a.m. appointment, Dr. Duvic rushes in and begins examining me. While she is looking me over, she suddenly says, "Have I asked you about your brothers and sisters?" I think hmmm, why is she asking me that? "No," I say, "and besides, I'm adopted." Then she asks if she's talked to me about a bone marrow transplant. ...You know those commercials where they are showing a scene or something and suddenly you hear a screech and the scene freezes... yea, well, that's what it was like for me.
So, what does this mean? I'm not sure. The Polaroid snapshot is something like this:
- 8 weeks of Skin radiation. Side affect? Makes the skin dry. Solution: have it done in Houston during the summer when there is lots of humidity. (BTW, when I asked Dr. Duvic if I couldn't have it done in Austin, she looks up at me w/this droll look on her face and says, "I wouldn't. It's very complicated procedure."
- 2 weeks of chemotherapy. Yep the throwing up, infection causing kind. Upside? Maybe lose some more weight? (I'm just trying to look on the bright side)
- Then finally about 100 days of isolation. The downside? This is when infection is most likely. The upside? Think how many books I'll be able read and movies watched.
Seriously, I'm not taking this lightly at all. But I am weighing a year's worth of treatment vs. who knows how many years.
I met a woman in the waiting room that's been coming for treatment since 1998. It's a lot to think and pray about, and I invite you to pray with me seeking the Lord to give me and my family wisdom if this will be the right thing for me to do. Of course if God just wants to heal me right now, that's fine, too! ;). But the BMT might be His avenue of healing. It's in His hands, I continue to proclaim He is a GOOD God. So I trust whatever happens He's done what's best overall.
So this week I'm meeting a Dr. on the BMT team and the BMT team (and here's some good news, it turns out that the BMT team at MD Anderson and Dr. Duvic have done more transplants world-wide than any other drs.)
I'll try and not wait so long to report back what I learn this week!
January 07, 2006
The Horrors of Pizza/Questions Answered
Update from my December 5th and 6th appointments.
But first the Horrors of Pizza. On Tuesday, after my blood draw, my bed for my photopheresis session wasn't quite ready, so my mom and I went downstairs to grab a bite to eat. The pizza looked so good... a 4" x 3" square with lots of meat on it. I got onlyone piece! We ate and then headed back up to the 8th floor. About 45 minutes later they hooked me up to the machine and began drawing blood. Well, when it got time for the red blood cells to be separated from the white blood cells (called buffy coat) all the alarms on my machine started going off. Hmmm... Well we weren't' sure what was causing it and they reset the machine. Ok, got thru cycle 1. Here comes cycle 2, I see buffy coat displayed on the monitor and again with the alarms already! Veronica, the PA on duty that day, walks over, pulls up my bag of white blood cells that is almost full of what looks like very watered down milk. She says to me, "What have you been eating?" I sheepishly reply, "One piece of pizza." To which she says, "Ohh, too much fat!" My normal 6 cycles that day ended up being only 3!! (to see the bag under normal circumstances click on January Archives and see a picture ...and NO I won't be a guinea pig for you and try out different foods to see which ones have exessive fat!)
Uh, I've not eaten any pizza since, then... well ok two very small pieces on January 30th! But talk about grossing me out... fat has suddenly taken on new proportions!
Questions Answered
Question: Will my color every go back to my normal color?
Answer: Probably not.
Conclusion: Ok, I have a perpetual tan.
Question: I have these little black dots, see like here on my calf. What is that?
Answer: Oh that's where you've damaged the cellular level of your skin from scratching.
Question: Will they ever go away?
Answer: Probably not.
Conclusion: So that's why they call this a disfiguring disease
But first the Horrors of Pizza. On Tuesday, after my blood draw, my bed for my photopheresis session wasn't quite ready, so my mom and I went downstairs to grab a bite to eat. The pizza looked so good... a 4" x 3" square with lots of meat on it. I got onlyone piece! We ate and then headed back up to the 8th floor. About 45 minutes later they hooked me up to the machine and began drawing blood. Well, when it got time for the red blood cells to be separated from the white blood cells (called buffy coat) all the alarms on my machine started going off. Hmmm... Well we weren't' sure what was causing it and they reset the machine. Ok, got thru cycle 1. Here comes cycle 2, I see buffy coat displayed on the monitor and again with the alarms already! Veronica, the PA on duty that day, walks over, pulls up my bag of white blood cells that is almost full of what looks like very watered down milk. She says to me, "What have you been eating?" I sheepishly reply, "One piece of pizza." To which she says, "Ohh, too much fat!" My normal 6 cycles that day ended up being only 3!! (to see the bag under normal circumstances click on January Archives and see a picture ...and NO I won't be a guinea pig for you and try out different foods to see which ones have exessive fat!)
Uh, I've not eaten any pizza since, then... well ok two very small pieces on January 30th! But talk about grossing me out... fat has suddenly taken on new proportions!
Questions Answered
Question: Will my color every go back to my normal color?
Answer: Probably not.
Conclusion: Ok, I have a perpetual tan.
Question: I have these little black dots, see like here on my calf. What is that?
Answer: Oh that's where you've damaged the cellular level of your skin from scratching.
Question: Will they ever go away?
Answer: Probably not.
Conclusion: So that's why they call this a disfiguring disease
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