November 2004 Archives

Walgreens has become my new store of choice. I must go there at least once a day. I usually have to go there to pick up some new prescription and they have so much other stuff, I just end up doing all my shopping there rather than make a second trip to the grocery store. In Addition to everything else, the Prednisone that I'm taking makes you hungary ALL THE TIME, so I have a lot of weird cravings. Things I have purchased at Wal-Greens in the past 2 weeks:

Pop Tarts (Starwberry and Cherry)
Cereal
Milk
"Milk and Ceral Bars" (These were way gross)
Peanut Lovers Chex Mix (Also Gross)
Tomato Soup
Bread
Cheese (Grilled Chesse and Tomato Soup Cures all.)
Chocolate Covered Almonds
"Heat and Eat" Mac and Cheese
"Breath-Right" Mentholated Strips
Milk of Mangnesia (Not recomended)
Maloxx (Highly Recommended)
Rolaids (The Ole chemo gives some kind of wicked heartburn.)
Stool Softener (WOO HOO!)
Kleenex
Nail Clippers
Carmex
Kleenex
Robitussion that made me way loopy and hallicinate
NOTE TO SELF do not mix Robitussin with Chemo Drugs
Ambisol (Chemo gives you mouth sores)
Bottled Water
Sprite

Here in OK they have a place called "Drug Warehouse" that we don't have in Texas. I thought I'd go in there yesterday since it looked bigger and nicer than Wal-Greens. That was a mistake, it's like a crappy Wal-Greens combined with a Dollar Store. Just say no.

Not doing too bad today. The chemo is definitely making me feel sick but overall I'm doing pretty well. Some nausea so far but I did manage to eat lunch. I had a fever earlier but it seems to have gone away. The worst part so far is the hiccups. I get the hicups about every hour and it's really annoying. I'm packing up to head to OK now to see the family for Thanksgiving. I'm leaving today and will be back on Sunday. I've got a whole new round of Dr. Visits next week. Oh and MD Anderson finally got back to me today with a follow-up appointment on the 29TH! A full week after they said that would get back to me. I told them I wouldn't be able to make it would call them to reschedule.

A lot of you have written me emails of support. I WILL get back to you it just may take a few days. All your letters of support are very appreciated.

I had my first chemotherapy treatment today. There are lots of different kinds of Chemo, mine is call CHOP-R or R-CHOP. This stands for Rituxan plus the CHOP chemo therapy program. The CHOP consists of for drugs Cytoxan, Vincristine, Adriamycin, and Prednisone. Cytoxan is the really nice one that makes your hair fall out, and causes nausea, vomiting, sterility, and kills off your white blood cells. They gave it to me as an IV which takes roughly 40 minutes, or at least it did today. They said it will take less time once I have my Mediport installed. A Mediport is a permanent IV installed under the skin in my chest. Everyone going through chemo gets one. The Second drug is Vincristine; it was actually just a very small shot that took no time at all. It also causes nausea and vomiting. I haven't had any nausea or vomiting so far so maybe I won't. They gave me some REALLY strong anti-nausea pills to take called Zofran, but I haven't had to use them yet. The Third drug in CHOP is Adriamycin; this was given to me in two large syringes. It's bright orange. This one also causes nausea, vomiting, and hair loss. They said this one might make me sick while they were giving it to me but it didn't. The fourth CHOP drug is Prednisone; it's actually a pill I take for 5 days after Chemo. I start taking it in the morning. It's supposed to make me feel like I have extra energy. They said to be sure and take it first thing in the morning so It won't interfere with my sleeping. The real humdinger is the Rituxin. This is the drug that can actually "cure" Lymphoma. It's given to me by IV, and it a huge bottle. IT normally take 3 hours or so to give it. It also makes you feel like you have the flu while they are giving it to you. My treatment took a little longer than that. When they first started the Rituxan I was fine. About 45 minutes into it I told the nurse I was starting to feel bad, so she shut off the IV. I continued to feel worse and worse and all of a sudden there were 6 nurses swarming all over me telling me to stay awake and talk to them. I heard one of them call for oxygen and suddenly I had a mask on. They couldn't get a blood-pressure reading from me and my Blood Oxygen was very low. I was just kind-of sitting there watching all this but apparently, I was told later, I had turned white as a sheet, and that's why the nurses were scrambling all aroud. They were afraid I was going to pass out. So they left me off the IV for about 2 hours until I gelt completely fine and then started it up very slow. It didn't make me sick anymore after that but it took about 5 hours for them to finish the treatment.

Oh and for those of you that don't know the Chemo goes in 3 week cycles. Week 1 is Chemo treatments (1day) the next week I will have lose white and red blood cell counts, then the third week is my "recovery" week so my body can be ready for the next chemo treatment the next week. I'm doing 6 cycles of treatment so hopefully I will be done sometime in March.

As for the question everyone wants me to answer. :)

I'm feeling very well. I'm very tired, but no nausea so far or any other bad side effects so far. Depending on how I feel I am traveling home to OK this week to spend Thanksgiving with my family. They all want to see me in person and know that I'm doing okay.

Well I'm back in Dallas now. Headed down to Houston to get a second opinion from MD Anderson on Monday. Tuesday, starting at 7:30 am, I met with the financial counselor, the social worker, the admissions nurse, my assigned Doctor's nurse, the Doctor's PA, and the finally the doctor. She really didn't have all that much to say. That she wanted to evaluate all the x-ray, CT, and PET films I had brought, but from the reports that had been faxed to her she believed that that initial diagnosis and treatment were correct. In any case, after meeting with her, they drew more blood, and did another chest x-ray. Then I came in at 7 am on Tuesday for a Cardio Scan, which I had not had before, and yet another CT Scan. This time of my head and neck. Apparently it's perplexing to them that my lymphoma didn't start in my neck, but rather my chest. All that was finally over with by 1pm and I was done and got to come home. I think they want to see my again next Tuesday, but if it's just to tell me that they agree with the original diagnosis, that doesn't seem to warrant a trip to Houston. I'm also really damn tired of tests and scans at this point. My policy from here on out is that they REALLY have to convince me if they want to do anymore tests.

I was not impressed at all by MD Anderson, despite all the glowing reviews people gave them. I'm sure they do offer experimental and clinical treatments that no one else can, but I think actually GETTING those treatments would be a nightmare. The whole experience was like trying to get medical treatment at a crowed badly run convention. Everything took forever, if you didn't constantly remind them what you were there for they would promptly forget you were waiting. There were so many people in the lab where I got blood drawn that it was standing room only. The radiology lab left me waiting in an IV chair for half an hour because they thought I had drank barium and was just waiting for it to go through my system. When they finally came and gave me an IV (of which I got a total of 3 while I was there) the actual CT scan took 5 minutes. I can't even imagine what getting Chemotherapy from them must be like. On the plus side they had a very good library on cancer, which I took advantage of. I think I know everything there is to know from a patient perspective on lymphoma. I told the oncologist here in Dallas to go ahead and schedule my chemo, I think it's time to get started.

I found a few things today but not too much. I will be going down to Houston on Monday. I have an appointment at MD Anderson on Tuesday, at 7:30 am (bleah). They said I may be there all week but I can't imagine that being the case since they've already done every test known to man on me. My Doctor here thinks I'll only be there a day or two. I also got the results of the Bone Marrow test today. It was negative. This is very good. It means the cancer has not spread to my bone marrow, which would mean it was in a much later stage. Tommorrow I get the Doctors interpretation of my PETScan. I've already seen my petscan and it doesn't show anything other than the Tumor that we already knew was there, so that's also very good.
I spent most of the day on the phone eithe trying to setup the appointment at MD Anderson, getting info from teh Doctor, or trying to make sure all my short term disability paperwork is taken care of. That was a chore. It seems to be all lined out now but I was on the phone for about 5 hours today, so I'm really tired of the phone right now.

Geez I stop watching the news for a few days and all kinds of stuff happens. Attorney Generals are never popular figures, but Ashcroft was more than a little weird. I wonder who else will resign. I had heard that Tom Ridge and Colin Powell were both considering moving on after the elections but now they are saying Condoleeza Rice may resign. The Commerce secretray was pretty obvious, when the whole country says your economic policies suck its time for a new commerce chief.

I went to the Doctor today to get the final diagnoses. It�s exactly what they said in the hospital last week. I have Large Cell Non-Hodgkin�s Lymphoma- B-Cell Type. The treatment is Chemotherapy and Radiation. I am getting a second opinion from the MD Anderson Clinic in Houston. My Doctor here agreed that would be a good idea. A second set of doctors to look over everything can�t hurt. The treatment right now would be 18-24 weeks of chemo and then 4-5 weeks of Radiation. The Doctor went into great detail about the Chemo and it side effects. They aren�t pretty, but neither is a �cantaloupe� sized tumor around your heart and lungs. It took him over an hour to explain it all to me and he wrote me 4 pages of notes. I�ll type those up later and post them here for you to see. It mostly says that Chemo sucks really bad and it�s going to make me very sick, bald, and sterile. Well okay MAYBE sterile, but there are ways around that these days. So that�s pretty much the bottom line. I�ll post more on the Chemo later. I won't start the Chemo until after MD Aderson has had a chance to review the case. So sometime in the next two weeks.

Today was eventful, well at least the morning was. Both the Surgeon and the oncologist came by first thing this morning to tell me that I almost certainly have B-Cell Type Lymphoma. I have an appointment to see the oncologist on Tuesday to get the full final results of the biopsy. He also ordered a new set of CAT Scans. The ones that were done on Saturday in the ER were only of my chest and the Docs wanted to make sure it hadn't spread any lower. So I got to drink two REALLY great tasting Barium Orange Shakes, and then wait.....2 hours for them to "filter" down. Then I got to wait another hour on top of that for radiology to come get me. So I FINALLY got out of the hospital around 3 PM today. Now I'm at home, recovering from the biopsy surgery. I've decided as well, that no matter what the oncologist tells me next Tuesday that I'm going to seek a second opinion from the MD Anderson clinic. Two completely un-related friends have recommended that I do so now, so I figure it must be a good idea.

I've been in the hospital now since Monday. It's pretty damn boring. They did the biopsy Tuesday afternoon. Afterwards, the doctor informed me that, in is his opinion, it was most likely lymphoma. Today was spent mostly waiting to see the oncologist, who came by around 7pm. He informed me that it could take quite a while to get the results from the biopsy, and there wasn't any reason for me to stay in the hospital. The oncologist ordered some more blood tests for in the morning, but then after that I FINALLY get to go home. I did ask him about the treatment outlook and.....it looks like 2-6 months of chemo depending on what the biopsy tells them. That's all I know for now guys. I want to thank everyone who's called, come by, sent flowers, emailed, and left comments. All of it is very appreciated!