Still in the Hospital

Finally getting the chance to post some updates... Our laptop crashed upon arrival at MD Anderson and we are unable to use our cell phones in the hospital room. In this day and age, no wireless access is cause for complete and total panic! We kept our cool and I came home today to get some things done at the house, including posting our latest news and repairing the laptop...

Lauri is still in the hospital battling a low grade fever. Over the past several days, the people at MD Anderson have run two blood cultures to determine what kind of bug Lauri may have, and then determine what kind of medicine they can give to kill it. Unfortunately, the blood cultures have come back negative. We have also been watching Lauri's blood counts, especially her white blood cells, hemoglobin, and platelets. After bottoming out on Friday, her counts are all increasing, with her white blood cells over 2 (normal range is 4-10, bottomed out at 0.2).

We are hopeful that the increase in white blood cells will allow the body to naturally fight off whatever is causing Lauri to have a fever. Lauri's fever comes and goes. Sometimes her temperature is normal, below 100, and then it will shoot up to around 101.8. The doctors get concerned when the temperature climbs over 101, since it may indicate an infection.

The doctors require Lauri to have a white blood cell count greater than 1 (check), and no fever for 48 hours before allowing her to leave the hospital. Lauri ran a fever of 101.8 late last night, which puts us into Monday for a possible checkout date if her fever doesn't return. Unfortunately, her temperature was at 100.4 and rising at 4 pm today. Hopefully it will fall back down soon, or else the "checkout clock" will reset.

There are many reasons to feel frustrated with this whole process: the lack of knowing the cause, the ineffectiveness of the medications to this point, the constant want to just go home, the lack of rest, and many other reasons. But we have to look at the bright side, the chest pain has gone away, and Lauri's blood counts are on the rise. Even though the doctors are doing all they can, I'll bet you the body beats them out and kills this bug before they have a clue what hit us! Only time will tell...

We discussed with our doctor why this happened and the possibility of it happening again. Our doctor told us that these things just happen sometimes to patients with severely low white blood cell counts. Sometimes they never find out what causes it (the fever or the infection), and sometimes it comes back, while other times it doesn't. We hope to investigate preventative medicines with the doctor during our next visit.

I hope to have more frequent posts during the next few days. Stay tuned!

Back in the Hospital

Yesterday afternoon Lauri began complaining of chest pain, and her temperature began increasing. By dinner time last night, her temperature had risen to 102.5 deg. I brought her to the MD Anderson Emergency Center where they gave Lauri several different medications and fluids in an attempt to get her pain level and fever down. We spent last night at the Emergency Center, waiting for the team to make a decision on if they were going to admit us to the hospital or not. The medications were successful in keeping Lauri's pain level and fever low, but they were only effective for a few hours at a time. Basically, they were successful in masking the symptoms, but not in finding the cause of the illness yet.

They have taken blood for blood cultures to determine what kind of bug Lauri has, and what kind of antibiotic will kill it. We don't expect to have results from this test until later tonight. Until then, Lauri is continuing to take medications to manage the chest pain, which she describes as like someone standing on your chest, with sharper pain on big breaths. They have also taken a chest x-ray, which came back as normal.

We have been moved (finally) from the Emergency Center to a room in the hospital (rm 1026). Lauri must keep her temperature below 101 deg for 48 hours before we are allowed to check out. We will try to keep posting updates as we can, while we both try to get some rest.

Freak show

Yesterday I went to the hospital for acupuncture, unhooking of the backpack and to meet with my study nurse about my white tongue. The acupuncture went fine. I have not been feeling "hungry" the last 4-5 days, so that's one of the things the acupuncture doctor asks, like what your your symptoms. So I said, fatigue, nausea, anorexia (no appetite), etc. So she put 2-4 needles in my stomach. And almost immediately when she took them out, my stomach started growling. Isn't that crazy? It really does work. I still didn't feel like eating because my mouth is completely white, feels very thick and fuzzy. So off to see Pam, my study nurse. She comes in, takes one look at my mouth and says, "Wow, that's the whitest tongue I've ever seen". She then proceeds to call her doctor to come and look. Then they took pictures of my tongue for the journals and everything. I felt like a circus clown. (Not really, but it was kinda funny). Then that doctor calls a dentist to come and look at my tongue/mouth just make sure it's the study drug that's making my mouth look like this and not thrush. She came to the same conclusion, it's leukedema. Just overgrowth of oral mucosa. I guess it's better than mouth sores. So, after that fun, we went to eat lunch and then get unhooked from the dreaded backpack.

Also, yesterday the space shuttle made it's way back to earth and landed at Edward's Air Force Base in California. It's good to see another successful misson complete.

Quilt and chemo day 3

Yesterday when I got home from the hospital, I had a package waiting for me. It was a beautiful quilt made by my mother-in-law, with the help of our family and a few friends. I just love it so much and want to thank everyone that contributed and put in a lot of long hours to make their squares. Each one is unique and relevant to me. It's just awesome. Here is a picture of it:

Today for chemo I was in a new unit. It was nice, almost like a suite. I had a real bed (not a stretcher) and a decent sized tv in an armoire. Much bigger room than the chair unit. But still the same menu for lunch, which I gave to my mom. I don't have much of an appetite and my taste buds are all screwed up so nothing tastes the same either. But again, we got through right at 5:30 so we had to fight traffic all the way home. So we didn't get back until almost 7:00. Anyway, back again tomorrow for another set of labs and the last day of chemo.

Round 2, Day 1

Well, today didn't start off too great. We got to the hospital and there was a million people waiting for labs to be drawn. Luckily, I didn't have to wait too long there and I made it to the bed unit a little after 9:30 (which was my chemo start time). Only I didn't get called back until 11:15. Very frustrating. This really sucks because now I have to start at 11:30 for the rest of the week. There was no reason for the delay, I was simply "skipped over" for some reason. I was not very happy. But what can you do, absolutely nothing. It's like sitting in traffic for almost 2 hours and finding out there was no wreck or construction to cause it. Grrrrrrrr! Anyway, it's over now. The other bad part is that it puts us leaving at 5:30 pm, really sitting in Houston traffic. Not fun. But now we can sleep in and take our time in getting there. The rest of the day was uneventful. Got all my drugs. "The backpack" was hooked up around 2 pm, so I have that to keep me company tonight while Jeff is off to work again for another night shift. Hopefully he will get home and be able to get some rest in the morning before we head out to the hospital. He got some rest at the hospital today so that was good. My mom is heading in from Louisiana tomorrow afternoon and should be here before we arrive home from the hospital. All right, I think that's about it for today. I'm really sleepy, so I'm going to try and catch some shuteye now.

Raffle in Austin

Tonight I went to Austin for a raffle that my nurse friends put on to raise money for me. It was good to see everyone again and I had a good time. They raised a lot of money for me and I just wanted to thank everyone for donating items to raffle off, buying tickets and selling tickets. It's amazing to me how generous people are these days. I really appreciate everything my friends in Austin did for me. It was a nice evening. I even pulled my own name! I won a $50 gift certificate to a day spa in Austin. I am very excited about that. I can't wait to get a massage that lasts longer than 10 minutes (like the ones I get at MD Anderson). I especially want to thank Lesa for pulling everything together. She is an amazing woman and I really miss her! Thanks Lesa, your the best! I should be getting some pictures from some of the girls there so I will try to post them when I get them. It was my second day wearing a scarf on my head, so I'm still getting used to it. You'll have to let me know what you think.

Well, it's getting late. Jeff is working the late, late shift tonight. I expect him to be home around 4 or 5am. We have to be at the hospital at 9:30am for round 2 of chemo. Hopefully he can get some good sleep before we have to leave.

Vacation

Jeff and I got back from our vacation to Arkansas on Thursday night. We had a very relaxing time there. We left on Monday morning and arrived around 5:30pm. Tuesday we rented a pontoon boat/party barge for 4 hours and cruised along Greer's Ferry Lake.

It was a beautiful day out and we had a lovely time. Wednesday we went to see the Greer's Ferry dam up close, then in the afternoon Tony (my brother-in-law) and Jeff went to play a round of golf while the rest of us checked out the shopping in "downtown" Heber Springs. Oh, also on Wednesday morning Jeff shaved my head and then my sister cut his hair shorter. We'll post pictures of everything later on. Wednesday night we barbecued some pork chops and chicken and had a nice feast. Thursday Jeff and I got up, packed our stuff and hit the road. We made it back around 7:30pm.

Friday it was off to MD Anderson for a day of fun. Lab work, chest x-ray, Dr's appointments and I got my medicine to protect my mouth from getting mouth sores. We arrived home around 6:30pm, both pretty tired.

Update on the last few days...

I know it's been a few days since I last posted a message and you are all wondering how I'm doing. So let me try and sum up the last few days for you:

Wednesday: I had such a good day on Tuesday and then on Tuesday night it just went downhill. I felt awful and my temperature was rising to a point where I might have to go to the hospital at any moment. So I didn't sleep well on Tuesday night, which made me very crabby on Wed. I still felt awful, but I made it to the hospital for a meeting with my study nurse, lab work and a massage. My temperature was still hovering around 100 (anything over 101 and it's straight to the ER for me) and still not feeling good when I got home. We ate some dinner and I went to bed. But I couldn't sleep and kept getting up almost every hour. So, no good sleep on Wednesday night either.

Thursday: I felt a little better Thursday. My temp was still on the high side. Jeff and I went to the hospital after lunch for lab work, a meeting with my nurse and to do a return demonstration on changing my cvc dressing (Jeff's checkout). The lab work was going to determine if I was going to be able to go to Louisiana for the wedding that Jeff was in on Saturday. Jeff's checkout went well even though the nurse was borderline nazi on the dressing change. She was tough, but Jeff passed with flying colors. That means that now he can change my dressing at home rather than me having to go to the hospital to have it changed. The lab work came back with bad news. My doctor said my white count was too low and it would be too dangerous for me to go to a wedding and be exposed to a lot of people. (FYI my white count was 0.6 and my anc was 80 for those in the medical field). So I was pretty bummed on Thursday cause I was really looking forward to going to the wedding (especially since I still had my hair!). Also, Jeff's parents came in from Fredericksburg because they were going to the wedding this weekend, too.

Friday: I woke up feeling really good on Friday. I slept good and I didn't feel very fatigued. More lab work to be done, so I headed to the local Quest facility and had my CBC drawn. We were going to wait until the results came back from that and make a last minute decision on whether I was going to go to BR with the Mauldin clan or stay behind. The results took a lot longer than expected, so we made an informed decision that I would go with the Mauldin's to the wedding and just be extra careful, not hug or kiss anyone and wash my hands religiously. I felt confident that my decision was a good one, because I felt so good that day. We got the call while on the road from my nurse Pam that my WBC's were up to 2.0 and my anc was up to 1,000!!!! This was great news. The anc magic number was 1,000 before she would let me go and I had reached it on Friday! I was very happy that I had decided to go and not stay home.

We made it to the church for the rehearsal just in time at 6:00 pm. After the rehearsal, we went to a place called Drusilla's for the supper and ate some yummy fish. Jeff made a beautiful toast after dinner and made everyone cry with his poignant words of wisdom. Then we made it back to the hotel for some shuteye.

Saturday: Jeff headed out to do his best man duties with the groom, I stayed back at the hotel and visited with my sister and niece, Nicki and Kirsten, my best friend Michelle and Jeff's sister Carrie. It was a good morning. We ate lunch then headed off to the wedding and then the reception. We made it back last night at 11:00 pm.

Sunday: Slept well last night. I got up and made breakfast for the Mauldin clan, cinnimon rolls, bisquits, bacon, fried eggs and coffee. We saw the Elder Mauldin's off at 10:30. We got things ready for our trip to Arkansas that we are leaving for tomorrow. Jeff is cooking up some fresh fish that we acquired on our trip to BR. I can't wait to eat it.

So that sums up our last few days. Not sure we will have internet in Arkansas so it may be Thursday or Friday before we can post again. I have a feeling that my hair is going to fall out very shortly. So the next time I post, I may be bald! Keep checking!

A good day

Well, today was a very good day for me. Feeling good wise, anyway. Can't say I was very productive, but I woke up feeling good. My mom left this morning and big thanks to her and all her help around here. I actually exercised this morning for 40 minutes. That was tough, but I made it through.

I think I have thrush so I called one of my nurses and got a prescription for some meds that I am now going to take for a week. I think they are helping already. That was the only driving I have done in the last week. Felt good to get around by myself. After that, I came home and tried to nap, but Bromley would have none of that. He kept barking at the neighbors and driving me bonkers. I talked on the phone and watched a little tv. Oh, Jeff and I just got finished giving Bromley a haircut. Definitely not your beauty parlor haircut, but it was free and it's decent enough. Nobody laugh at him ok? He won't know any better.

Hopefully tomorrow will be even better than today. I have to go into the hospital for some lab work, a mouth assessment for the study I am in, and another massage. Can't wait for that. The massage that is. I can do without the labwork. Hopefully the labwork will come back with good news that my levels have come up. I kinda bottomed out on my white count on Monday so I'm hoping some rest and some extra medicine will do me some good.

Until tomorrow...

Acupuncture

So today I had my acupuncture appointment. I know what most of you are thinking, "Oh my, needles!". But it wasn't that bad. She asked me a few questions and then told me she was going to put about 10-11 needles in. She asked me if I was nervous, when I told her "yeah, a little", she said "ok, I put 11 needle in, one more in forhead." How's that for being nervous? One smack dab in the middle of your forehead. Luckily, I closed my eyes and couldn't really tell the difference. So she put two needles in my arms, two in my stomach, four in my legs and two in my feet. The ones in the feet hurt the most, but all in all not too bad. They leave the needles in there about 20 minutes, stimulating them once or twice during that time.

After that, I had to get my cvc dressing changed, which took over an hour because of all the people in the waiting room. Then we got caught behind an accident on 610 east bound for about 40 minutes. We finally got past the accident, ate lunch, went to AAA and finally made it home just before 3pm to watch the last 5 laps of the NASCAR race and then we sacked out! Doesn't sounds like much but we were exhausted today. Hopefully, tomorrow will be better. I don't have to go to the hospital at all so should be some relaxing at home for me. And my mom leaves tomorrow. She's been a big help around here and we sure will miss her.

Freedom from the backpack

Today we had lots of progress. I got a "relaxation" massage which was really nice. It was only about 10 minutes, but well worth it. I'm going to be doing a lot more of those in the future. Also, got rid of the stupid backpack and now I feel like a free woman! I got a shot of neulasta which should help my white blood cells spring back to life. After that, we (me, Jeff and my mom) went to Sudie's for dinner and celebrated one week down.

I'm feeling pretty good today. Not icky like previous days, just rundown. Hopefully, the worst is over and I will feel better and better every day until the next round.

In case you are wondering, I still have my hair. I have been checking every day and so far no clumps yet! Wahoo! Maybe it will hang on for another week or two. I'll keep you posted.