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
September 30, 2006
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.
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