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!!!
October 09, 2006
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
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