Reports from Houston - August

Another Weakly Update ;)

Why do Texans think they have to keep the a/c set on 72 or lower? I know it gets hot here, but hey, think how much energy and money we would save by turning up the thermostat a few degrees.

So it continues my dear friends and family… I’m still cold. It's been 7 days since my last treatment and while I admit I’m not as cold, as I type this I have the heater going, shawl draped around my shoulders and the unibomber look is backkkkkkkkk!!!

Ok, enough griping. I don’t have much to report. I went to Houston last week and had my photopheresis treatment. Told the doctor in charge of the machines about me not being as cold last time and he said, “oh well, let me know if it happens again and I’ll talk to Dr. Duvic.

Ok this is now a week later and I’m finally getting this finished. Here’s what’s happen this week:

I HAD NO IDEA

On Saturday night Keith and I went to a very nice restaurant to eat. After we got up to leave I realized that I had not been cold or itchy for the 2 hours we had been there. Ok, granted, I had on a turtle neck sweater, heavy knit sweater and sat with my back to a large window that faced West and was still warm from the afternoon sun! Oh yea, and it might have been the Amarula (On the wide-open plains of Africa grows a tree uncultivated by man. Scientists call it "Sclerocarrya birrea", but it is more commonly known as the Marula tree. The tree only grows in one area on the entire planet, the warm, frost-free (unlike me!) regions of subequatorial Africa. It is from the fruit of this mystical tree that Amarula Cream is borne). and coffee! OH MY GOSH… now that made me feel very warm. Anyway, I had no idea how much energy of each day I’m spending trying to keep warm and not scratch.

My skin continues to look better but I’m sooooooooooo tired. Today I slept (after 8 hours last night) 5 hours and I’m ready to go back to bed again. I had turned off all the phones, put the answer machine volume on 0, left my cell phone downstairs, but dang, forgot to turn off my pager. So if my pager had not gone off who knows how long I would have slept.

Now to the important stuff, prayer requests: I mentioned earlier the woman in Marble Falls who has MF and has been doing those wild wraps (lay on a bed, smothered in a steroid cream, wrapped in hot towels, trash bags and blanket) well anyway, she said that she was completely itch and flaky free. So Keith and I have committed to doing these wraps each night. It is time consuming, but if it helps w/the itching then it’s worth the time and effort. So pray that we will be up for this challenge each night, when we are both tired. Pray for me not to be exhausted. My job, my house, my kids are all suffering because of my extreme tiredness. I’m still cold.

I’m off to Houston again next week. I won’t have any information really until after September 14 when I see Dr. Duvic again

Meeting w/Duvic - July: another "Weakly" update

My Weekly (or should I say weakly? update not because I feel weak but because I'm so bad about updating weekly).

So I finally saw Dr. Duvic last week. My appointment was scheduled for 2:15 pm and we got into a room about 4:15 pm and left at 5:15 pm! Of course I saw her resident first. A very beautiful oriental girl with perfect skin… I mean geez, what is that all about? Sort of a Beauty and the Beast theme going there! Dr. Duvic, flies in, looks me over, says “You’ve still got staff infection” She’s barking orders to the resident, who is responding with “I’ve done that…" in a snippy voice. Ya think they had a hard day? being 3 hours behind time? Ok, we’ll give them all the benefit of the doubt.Of course they repeated "You've got to quit scratching." Which I wish I had replied... "Yea, right that's like telling Richard Simmons to not be so PERKY!!"

My mom asked, Well did she have ANYTHING good to say? Well she did…she said my back looked good. (Viewings available between 1:30 pm and 3:30 pm Monday-Friday, by appt. only on the weekends) Well here are the good things I have to say!!!

1. I’m not as cold… in fact today I was actually HOT in my office. Thank you thank you thank you for praying for that. I can sit in a restaurant and not look like the Unabomber (for those of you who have NOT seen me in my hooded sweat jackets, that’s what that refers to)
2. I’m still losing weight… not a fun way, but I can stand to lose another 20 lbs.
3. My skin is beginning to look and feel like skin. Several comments of “I think I see pink, Renee” and “you're not purple anymore” and then my husband said after putting lotion on my back this morning “You skin feels like skin finally!”
4. And how is the itching you ask? Oh I still am! I’ve been reading a book of short pithy stories called “Stories from the Front Porch” and decided to try my hand in writing something like that about all the ways I find to scratch. I've posted it in a seperate post.

I’ve been very tired the last 2 days, but it may be because I’m now on 2 antibiotics. Got another bladder infection. That is what will kill you with this cancer… the infections. I’m trying very hard to keep infection at bay. But with all the scratching it’s hard. So pray God will protect me from myself. Once again, thank you all so much for all your love, prayers and support. You are my angels everywhere I go!

Oh yea, forgot to mention I've been griping because I've lost almost 30 lbs and I can't wear any little, cute, kicky sun dresses or skirts because I'm NOT that warm yet. Let me see... I think I read somewhere "Vanity is thy name, oh woman!"

Journal Entry 4 - Staging, Meds & Definitions

I know many of you have been wondering “When is she going to update her web page???” Well not all that much has changed so there wasn’t much to tell, but since everything at my office is kaput (the new software program we just installed) and I can’t do anything else because MY computer is sporting the BSOD (blue screen of death) I thought this would be a perfect time to update you all on my progress. And we are making progress. I've included a bunch of medical stuff for all my medical friends reading this. The rest of you (like me) can just skim over it!

I finally got staged . Definition of stage: to determine the phase or severity of (a disease) based on a classification of established symptomatic criteria ; also : to evaluate (a patient) to determine the phase, severity, or progression of a disease.

With MF staging is determined usually by biopsies, however, because MF was found in my lymph nodes the automatic staging is IVB. (read: most people w/"normal" cancers staged at IVB are given a prognisis of a year to a year and half)! Yes, I win the prize for being staged at the highest stage given to MF patients. But then all can see how BIG MY GOD really is! So I’m not discouraged in the least about this staging! God is so good and He loves me so much (you all have proved that time and time again). So why am I staged at IVB? Well the T-cells are in my blood, in my bone marrow, BUT not in my organs. (though some contend you can't be IVB w/out organ involvement). There is a spot on my kidney, which I've had for a while, that Duvic (my doc at MD Anderson) wants to do a sonogram on but she feels its nothing.

I will be back in Houston on July 13th to see her. So I’ll have more of an update on what SHE thinks of my improvements.

Because of the T-cells being in my blood I not only have Mycosis Fungoides, but also Sezary Cell Syndrome. Se·za·ry cell: any of the large mononuclear T cells with irregularly shaped nuclei that are characteristic of the Sezary syndrome. Albert (1880-1956), French physician. Sézary was associated with clinics and research laboratories in Paris. He specialized in venereal disease and diseases of the skin but also did research within neurology and endocrinology. His publications covered such topics as disorders of the adrenal glands, tuberculin therapy, and antituberculous serotherapy. He was the author of a number of works on syphilis and its treatment and a dermatology text. I know more than you wanted to know!

I continue to have my photopheresis every 3 weeks (click on pictures link!) Here are the list of meds I'm taking (I know you can't wait!)

BEXAROTENE (Oral) (Capsule) This medication is also known by the following brand name: Targretin (Oral) Directions: TID (actually I take mine all at once!) 75 mg. Treats skin sores associated with a type of cancer called T-cell lymphoma. Another interesting tidbit w/Targretin: Do not eat grapefruit or drink grapefruit juices while you are taking this medicine. And of course my favorite side affects: Dry skin, itching, mild skin rash
And my favorite drug (NOT): Drug Name: INTERFERON ALFA 2B (Injection) (Injectable) This medication is also known by the following brand names: Intron A (Injection), Rebetron 1000 (Injection), Rebetron 1200 (Injection), Rebetron 600 (Injection) Directions: 3000cc 3x/week. It’s an “all around drug”, everyone should be taking it, *just kdding: Treats hepatitis B and C, lymphoma, skin cancer, genital warts, certain types of leukemia, and Kaposi's sarcoma (in people with AIDS). And the side affects of this is rather daunting: Possible Side Effects While Using This Medicine: Call your doctor right away if you notice any of these side effects: Allergic reaction: Itching or hives, swelling in face or hands, swelling or tingling in the mouth or throat, tightness in chest, trouble breathing  Dark-colored urine or pale stools  Depressed mood or thoughts of hurting yourself  Fast or irregular heartbeat  Fever, chills, cough, sore throat, stuffy or runny nose  Light-headedness or fainting  Muscle pain, weakness, or cramps  Nausea, vomiting, loss of appetite, pain in the upper stomach  Numbness, tingling, or a cold feeling in your hands or feet  Unusual bleeding, bruising, or weakness  Yellow skin or eyes If you notice these less serious side effects, talk with your doctor:  Problems with vision  Mild nausea, diarrhea, loss of appetite  Trouble sleeping. Yep I think that about covers body, mind and soul!

These 3 things each give me a 50% chance of putting my MF/Sezary in remission, however, we all know that God is going to cure me. And He will use what is at hand to do so.

All your prayers and love are my staying power, my upbeat mood, my ability to cope where I see many on the MF newsgroup despairing. Without God often there is no hope, but I have more hope than I certainly deserve.

Yes, I’m still itching, though sometimes not as bad. Here are my thoughts on how to stop me from scratching:
1. Put myself in a straight jacket. However, being half-Italian I’d never be able to complete a sentence because you know WE MUST talk with our hands.
2. Wear gloves. I’m already doing this because my skin is splitting like crazy. It’s the Michael Jackson look…however, I don’t think he gets his glove(s?) at Walgreen’s for $3.94! And since I get darker as he gets lighter might as well finish off the look.
3. I could do like the Bible says … if your hand offend you cut it off… but then who would bring you my updates?So I guess I’m stuck with itching and flaky, at least for a while!

The doctors said give photopheresis about 6 months and I should see some improvement.

Prayer requests: That I wouldn’t be so miserably cold. This is the only thing so far that has actually gotten me down. I spend all my energy trying to stay warm. That I’d quit scratching.  That the interferon shots will not make me sick.  That my hands would quit splitting. It hurts to do anything with them… like typing! And scratching (ok that’s feels so good, but I look for credit cards, keys, pens anything to scratch with… that’s bad) and handling paper, washing dishes, (good)… you get the idea.

Thank all of you for all your love and support and encouragement. Please forgive me for those of you I’ve not responded back… I intend too, but sometimes I get home and don’t even turn on my computer. Now you KNOW for sure I’m sick!

Update 3...Thursday and Friday at MDA

I’ve been prodded, poked, scanned and stuck so many times over the past 3 days, I feel like a voodoo doll. Sorry its taken me so long to give you guys an update but Keith (aka Dick) and I (aka Lisa) landed at MDA at 8:45 am last Thursday, June 2 and didn’t leave until 9:15 pm. Needless to say with only some chicken noodle soup in my stomach since noon that day, because of my cat scan, I was starving and so was Keith. But more about that later.My day: June 2nd: I had an appt. with a doctor talk about my photopheresis (remember where my white blood cells get to party in the tanning bed?) at 9 am. However when we went to the front desk to get my schedule it showed a chest x-ray for 9:00. Well someone told me Dr. Duvic wanted every test repeated and boy did they mean it because I’ve had TWO chest x-rays since March. Tip: If you ever come to MDA and they ask you to bring your films from scans or x-rays, call your doctor’s nurse and see if the Dr. will REALLY look at them! Keith and I carried them around all day the first day and no one ever asked to see them!The different clinics are very forgiving if you don’t make your scheduled appointment on time… its just a guideline we quickly learned! Thus, because we really wanted to talk to someone about the photopheresis, we went to the 8th floor to speak w/the doctor who we had an appt. with. But alas, the doctor I was to meet with wasn’t even scheduled to work that day. So we played talk to the scheduler. Needless to say that wasted about an hour, but in the meantime I did get my chest x-ray while they figured it out. Fortunately everyone is so helpful and nice that the mess-ups really didn’t get me down and when we got back from my x-ray, we were told yes I could start the photopheresis. That was a real blessing, because my scheduled worked out that I could have the 2 day treatment that day and Friday, which meant we didn’t have to come back the following week. We hung out at the photopheresis lab waiting for a doctor to give the ok for my treatment. Finally they decided to just let me do it and then have the doctor come talk with me. But first I discovered I have to give blood before each photopheresis to see if my hemoglobin or heroglobin is ok. Did I mention I hate having my blood drawn? Actually, what I really dislike is having needles stuck in me by people who think that doing it real slow and saying, “now this is going to sting...” or my favorite: “a small stick” makes it better! So after a blood draw, some soup and I settled into my first session of photopheresis. It wasn’t too bad. I laid (layed? I can never get that right!) in a comfy bed with my arm (see photo at end of this trirad under photos) stretched out, palm up with tubes stuck in me that takes the blood out, spins it around, and puts it back in minus the whie blood cells... for 6 cycles. When the 6th cycle is finished and it has taken all my white blood cells it can manage, and put them in a little bag, then the bag empties into the tanning booth (it’s kind of like the Krispy Kreme, donut conveyor belt… or that snaking line at any amusement park. Its really neat in that the machine can tell how long your wbc need to be in the tanning salon. On Thursday they went thru the bed for 32 minutes. Then on Friday, it took 56 minutes! Guess they heard about the great party the others had on Thursday. All you can feel is when the machine is pumping out blood a thumping where (they tell me) the needle is hitting the top of my vein. While my blood was being washed, Keith and I watched a movie… The Phoenix, it was pretty good. I wanted to watch the Notebook, but we weren’t sure how my sobbing loudly would affect me or the people around me. I’m really blessed to have good veins and had a pretty good pumping rate, thus making the process go faster. Finally we got to see a doctor who explained more of the process I was undergoing. The best news is he thinks in about 12 procedures (a procedure is one day’s worth) I should see a reduction in my itching!!! So I’ll schedule treatments, every 3 weeks for 2 days until who knows when. One thing Dr. D. said that if we can keep me in remission with just the photopheresis. They say this cancer can never be “cured”, but they don’t know MY God!!!So I’ll continue to go to Houston every 3 weeks for my photopheresis, give myself Interferon shots 3xs a week, take my Targretin pills 3x a day (at $30/pill… thank heavens for insurance1), soak in bleach every other day and coat myself in Triamcinolone cream and then wrap myself in warm towels every night! Whew makes me tired just thinking about it! I’m doing amazingly well. The shots have not made me ill, or even a little bit fluey as they said it would. I do find myself getting tired more easily, so I’m trying not to be me, and get some rest, slow down, and go to bed at a reasonable hour! \Now for my top 10 reasons why I know prayer works:10. I’m no longer yelling at my kids so my eldest no longer has to say “I forgive you mom for saying the D word”9. When I shave my legs, I actually see hair on the razor rather than dead skin!8. My dry skin is greatly reduced!7. The itching is a bit better. Keith says I’m not scratching so frantically!6. I’ve not had any of the side affects they say I would have.5. When Keith held my hand the other day, he said, wow it actually feels smooth.4. When Alex put lotion on my back, she said the same thing. (didn’t realize I was like a lizard!)3. I think I see spots of the real “me” (color) beginning to show!2. Thru this process since I’ve had my blood pressure taken so many times, I realize I don’t need my hypertension meds anymore … my blood pressure is running 118/68 with out my meds! And the number reason I know prayer works1. Since I’ve been off the bp medicine, I’m not near as cold!!!!Thanks again for all your love, prayers, encouragements, and offers to help… I could go on and on. Again feel free to pass this on. If you want to be in my “special” e-mail list to make sure you get my updates, see the link below. Love you guys, and keep praying! God is being so incredibly gracious to me. We are going confound the medical field when I’m cured!!!!P.S. I’ve not proofed this like I should, but I’m tired now ;) and hope you will overlook any faux pas. . (yes Debra it’s true, I didn’t read it out loud or take a piece of paper and go line by line!)

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA, June 1, 2005
I had typed all my goings on today and then I lost it. So here is the brief edition:Saw dr. d. and here is what they are going to do.I need to have bone marrow test, CT scan of my entire body (yummy… that stuff they put in your veins makes you all toasty warm). And they hopefully will start photopheresis tomorrow..This is where they take all your white blood cells and they go to this tanning bed and little waiters take their orders for pina colada or white wine, then they come back to my body all happy No seriously here is what it is: Photopheresis, also known as extracorporeal photochemotherapy (ECP), is a form of apheresis therapy. It involves light-activated treatment of circulating blood cells outside the body. "Photopheresis may act by modifying the patient's own immune response to his/her disease. On this basis, the therapy is being extended to graft vs. host disease, organ transplantations, and early scleroderma and other autoimmune diseases." - roswellpark.org Here is how it’s down (you thought I was kidding!)Procedure outline:1) The patient ingests a light-activatable drug, called psoralen2) An IV (intravenous) line is placed in the patient, a drug called psoralen is sometimes given.3) Blood is temporarily removed from the patients. White blood cells and are separated out and the mixed outside the body with the patient's plasma, saline, heparin, and 8-methoxyposoralen. The preparation is then passed through a device where it is exposed to ultraviolet light. 4) The treated mixture and untreated blood is combined and returned to the patient. The procedure takes approximately 4 hours. I will have done every 3 weeks and it takes 2 days and can only be done here at MDA. We don’t’ have no tanning beds for white cells in Austin!I’m going to be taking Interferon shots. They build up your immune system but make you feel like you have the flu! Make sense to me! I take those 3 x a week. Next week I’ll take Targretine pills all this is to make my immune system better. If I get better we may not have to do chemo. But at least this will get my body in better shape for chemo.Also, I take bath with ¼ cup bleach every other day, get sprayed down with vinegar/water mixture and then slather this cream all over me, while keith is soaking towels in warm water that he will then wrap me in for 20 minutes. Suppose to help me w/my itching/dry skin. Dr. D said I’m cold all the time because my skin is not doing anything it’s suppose to do… like maintain heat! Also, she said she sometimes will put people with level of staph infection in the hospital, doesn’t think she will with me. I gave blood twice today… once for the record and second time because I signed up to be part of the clinical research. Didn’t realize what paper I was signing.And then I got my playboy shots. Yep, they took pictures of me in my almost birthday suit! Ok I’m off to soak in some bleach… I’ll get white one way or another.

Finding the right Dr.... God intervenes!

... My life so far...
Where do I begin?? Ok, here is a summary of my life AC (after cancer)! As you know I was scheduled to go to MD Anderson on June 2nd to see a Dr. Heigimistercan'trememberhowtospellhisname. BUT, I really wanted to see Dr. M. Duvic. Not only because she's the leading specialist, world-renown, on the cutting edge, thinking out of the box, Mycosis Fungoides super woman, but also because I've heard she's real cool and groovy! So I called her office. They took my information. I called back... they said you already have an appt. w/an oncologist here at MDA. Besides you can't see her until June 27th. Keep your appt. w/the Dr. H guy and maybe he'll send you over to Dr. Duvic. Meanwhile in a Dermatology office in west Austin, Dr. Shaffer, my derm doctor is putting together a packet along w/pictures of Moi's arm, neck, face (I shudder to think what they look like) and getting ready to fax them to Dr. Duvic. His nurse calls Dr. Duvic's office. Her office declines the packet to be faxed, because, after all I ALREADY HAVE AN APPOINTMENT. But bless Dr. Shaffer's nurse she send them anyway. Dr. Duvic sends an e-mail to her schedulers (now how cool is that???) and says, make me an appt. with this Lisa Renee Atkinson person. Yesterday I get the call... they are babbling something about an e-mail and I can now see her and they need to make an appointment and ... they'll call me back. That's when I hit the wall. As many of you know I've been pretty, well how do we say it? Manic! So I crashed. Went to bed at 6:30 pm last night ... but feel much better today.So today I call and say Am I going to see Duvic??? When can I see Duvic???? Can it be sooner than 4 weeks???? And the answer to all these questions were Yes, Yes, and Yes. And I get to see her a day earlier than I was going to see the Dr. H. guy!!!! So a week from today, I'll be at MDA having who knows what done to my who knows what!Many of us all along felt like she was the one I was to see. So thanks for praying, thanks for keeping me in your prayers, they are the glue that is holding me together.You have all been AWESOME!!!! I love all of you guys who are reading this more than I can express. My family is blessed by you, I'm blessed by you!I'll try to write every 2-3 days and let you know what's up! What's down and what's sideways!

The Beginning... suspicions of Cancer (and some background)

Backgound: Diagnosed w/Psorasis in September 2003. Oral medication seemed to help. As my skin got better itching increased. Began light treatments in Nov. 2004. All that happened w/that was I got really dark. Strangers in the grocery store would jealously ask, "where did you get that tan??" We also began every test we could think of... all my blood tests came back normal. Who knew there was a special blood panel just for MF?? Then I noticed I was losing about 2lbs every 4 days. Now this was good news! But scary.

Had a biopsy by my Dermetologist in March. Results: little psorasisis and photo dermetitis. (When my derm had the pathologist recheck after my diagnosis, he changed the diagnosis but wrote [perhaps to cover his you-know-what??], These findings are consistent w/those of CTCL lymphoma. This case is somewhat unusual in that there is a rather significant componment of spongiosis which is uncommon for cutaneous T-cell lymphoma. That's me: uncommon

I noticed a large lymph node in my thigh. When I mentioned this to about the 100th doctor I had been seeing my primary finally said you need to go see this surgeon. I met with Dr. Marcus and he and I both agreed that it was only a symptom of me scratching so much. He wasn't worried at all and scheduled my surgery in two weeks. Which really surprised the scheduler. She kept saying are you sure? I was like, oh it's no big deal. After all my blood tests kept coming back normal.

Finally, had appt. w/Dan, my primary doctor, this morning. Assured me he's doing everything possible. Worried about cancer. Having CAT Scan tomorrow in stomach and pelvis. Said don't worry if they see any shadows may not mean anything. I have tinneatis (sp??) in BOTH ears. My left one was totally blocked all weekend and couldn't chew at all. Because of the ear infection I rescheduled the surgery to have my lymph node removed. Now it will be on May 10th. Yea, 4 days before my fifth birthday. Happy Birthday to me! But on to the cat scan.

The cat scan came back positive. On April 28th the cat scan report noted 5 large lymph nodes. The largest being 3.3 x 2 and the smallest 2.3 x 1.1. Also included in the report was the comment about multiple other smaller lymph nodes.

Impression: Lymphadenopathy within both inguinal regions. Pattern worrisome for lymphoma.