Another day, another hour waiting for the Doctor.

There I am perched on that little table in the doctor’s office (how in the world do football players lay/sit on those things???...but I digress) and in walks a Medical Student. He appears to have no clue why he is there, so being the helpful person I am I begin pointing out new spots on me and my smaller lymph nodes, and he looks, and he feels tentatively, obviously clueless. Then the resident comes in. She looks at his notes he has made and rapidly begins "shoulding" on him… you should look at this, look here, you should have made a note… and on she goes while he stands quietly aside and trying to take it all in.

The atmosphere of Dr. Duvic’s staff and office is she’s the Queen of England… and then there are her servants. And when the queen is absent, the head servant then flexes her/his authority. It really is quite funny. So the resident point out a few spots on my legs that ares clear and then she looks at my back. Wow your back looks good, she says. Then the queen comes in. She is looking me over while the resident points out a spot here, a spot there. The queen turns me around and says, Your back looks good. Keith and I are listening but trying to ask questions from our list we have complied. She answers never looking at us and writing some numbers on a piece of paper and adding them up. When she finishes she proclaims, you are about 30lear and explains that means I still have plaque over about 70f my body. She does agree that my lymph nodes are smaller. Good news? Who knows… she doesn’t comment. When she gets to my feet, which really do look 100etter, she says this is not good and writes 3 scripts for my feet. At the last minute she has the resident swab them for staph, which I have … AGAIN! It was interesting when I got the call from the Resident telling me I had the staph infection and needed to be put on antibiotics; I was at my primary doctor’s office. So that made it easy to get the prescription. Didn’t have to count on Walgreen’s to get it wrong.. I mean right. (see 4th paragraph for what that is all about). I also asked the resident while I had her on the phone what my blood tests showed. She said it looked like my T-cells were down (good sign) but my Sezary Cell count was back up. Earlier she had commented that staph infections were very common in Sezary patients… so maybe it was the staph infection that made my count go up???? Anyone??? No one knows about this MF. I had a nurse tell me that her daughter-in-law is going to school to be a PA (Physician Assistant for all you non-medicals… as if I know any??) and she had told her daughter-in-law about me so when they got to the T-cell lymphoma her daughter-in-law was quite interested, but they ended the short lecture with “but don’t’ worry about this, it’s so rare you’ll never see it!!!”

Ok, back to Duvic: She looks at my last blood tests and says your iron count is low, very low. Turns to the resident (who I’ve never seen before, btw) and says, have we done a comprehensive iron count on her? She then looks at me says, “That can be a sign of colon cancer.” and smiles! She asked if I had ever had a colonoscopy. I said No, and she said, Well it’s a good idea, you are 50. Like she has to remind me?? She continues to look at her notes and suddenly her head jerks up and she says, “Why aren’t I seeing you every time?” Meaning the fact that I come every 3 weeks for my photopheresis and have seen her only 3 times in the last 5 times I’ve been there. Keith and I just shrug and think to ourselves, well you never said we needed to see you every time I came for my photopheresis! So now I’ll be going on Wednesdays and Thursdays. I think. She may have clinic on Tuesdays but we didn’t get a chance to ask because suddenly she was gone. The room becomes eerily quiet; Keith and I look at each other and say “Are we done?” But wait there is more… suddenly the door opens and in walks in a beautiful medical student female and she says, Dr. Duvic said I should look at your skin. She looks and says “Oh your back looks good.” And she walks out the door.

One question we were able to voice was the fact that I’m having trouble with Walgreen’s renewing my prescriptions. Because the residents usually write my scripts, then they move on when a renewal is ready, the faxes are not getting to Duvic. And then I asked them to call her nurse, Johnny and later they told me his voice box was full. Well it was a mess. So Duvic, pops up as I’m asking/telling her this and she snaps, “Get me Johnny.” Johnny walks in and she says “Johnny we have an unhappy patient!” I’m trying to explain to Johnny I’m not really unhappy I’m just trying to make it easy for ME to get my meds. After all I AM the one with cancer, right? The conclusion I’ve come to is I need to call Duvic’s office and renew my own scripts (am I using that word correctly all my medical friends?)

My skin is looking better. We (that would be Keith) continue to do the wraps every night. If I miss a night then I get these ugly bumps on my thighs (talk about cottage cheese) and itch more the next day. We are down from about 2 18oz bottles of lotion every week and half to about one every 3 weeks. It’s so nice to not be so dry. And while I can still be cold at times its no where as bad as it was!!! I’m actually cold when other people are and I’ve been pretty hot some of these 100 degree days!

One strange thing that I have no explanation for is my Interferon shots will some days just wipe me out (very fluey feeling) and then the next shot I’m just fine. It’s weird and I just never know will I be ok after my shot the next day or the next? If I take some ibuprofen and go to bed I’m all better the next day! I still continue to handle it better than anyone else I’ve encountered who has taken these shots. Oh yea, Dr. D also said I have a touch of hepatitis but that is common when taking Interferon which is used to cure hepatitis C… I get so confused.

Overall I’m really doing great. I have learned when I run out of gas… I go to bed. No matter what time or day and I sleep until I wake up on my own and then I’m ready to go again. I think doing this has given me more energy overall, and I’m more focused (though my boss may disagree). Keep praying. It’s your prayers that is making this all bearable. God has been so good to me. And faithful I still have no doubt that HE will cure me from this “don’t worry about this cancer, it’s so rare you’ll never see it” MF!!

Words can’t express how much your love and support and house cleaning (hey that’s probably why I have more energy… someone is cleaning my house almost weekly!) has been a blessing to me and my family. I love you all dearly and pray the Lord will bless you all 3-fold with the blessings you have poured out on me.

Ok, it’s late I’m not going to check this … I want to get it out and I know you all will give me grace!

Oh p.s. When we moved to our new house our bathroom has a wonderful Jacuzzi tub. Well I’ve never been able to take baths because it only made my skin worse. But this past weekend I was exhausted and thought a bath would feel so good! So I thought I’ll just chance it and Praise the Lord it didn’t bother my skin at all!




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Thursday, September 1, 2005 11:22 AM CDT

Another weakly update ;)... on the 14th of September I'll see the Doctor so I should have lots more news!

I don’t have much to report. I went for treatement last week and my mom came and she journalized every moment in pictures. You can see them under photos at the bottom of the page. I did choose to leave some of the pictures off, like the one where they were trying to get my IV in. I decided, since my right arm always cramps during treatment, I’d use my left arm 2 days in a row. AGGGG, my vein rolled. And I hate, hate, hate having my blood taken, so I was NOT happy. But they called Joe over and they finally got it.

The wraps continue to work… less flaky skin and less itching. And of course w/this WONDERFUL 100 degree weather I got to wear a sleeveless dress yesterday (ok I did have a jacket on too)

I continue to be exhausted even after 11-12 hours of sleep. But I hear this is absolutely normal with taking the Interferon shots. And then there is the brain fog. Also typical with Interferon. In fact yesterday after I took my kids to school, I was listening to the news about Katrina. I got out of the car and went into the house. When I got ready to leave to come to work, I searched the house for my keys and finally looked outside in my car and yes there they were, on auxiliary. So I had to get a jump, etc.

I’ll be joyous when God completely heals me and several other people in my life will too :^)… My husband, my kids, and my boss!

The weight loss continues (which is the fun part) and did you know that you have to get your glasses tightened if you lose 40 lbs??? They kept falling off my face.

Again, thanks for all your love, support and prayers. You all have been so kind, patient, and encouraging to me! So check out my new pics. ~ Renee

P.S. Not checked for missing words, bad grammar, or flow of thought.