CT Scan, Chemo, and Thanksgiving

Today was a long day at Stanford...I was there from 10am to 3:30pm. The day started off with an appointment with the infectious disease specialist. He took a look at my blood counts as well as the CT scan I had done yesterday. My liver numbers looked good (they were concerned because the anti-fungal medication can elevate them) and the CT scan showed that the nodules in my lungs that were there two weeks ago have cleared up. This is great news, because that means it was indeed a fungal infection that was causing all the high fevers and I have responded well to the medication. Because of the great response, tonight was my last dose of Caspofunjin (the anti-fungal I was giving myself by IV), however I will remain on Voriconazole (an oral anti-fungal) for a couple of more months. I had been taking Voriconazole since my 2nd transplant so it's nothing new for me. He also took a look at the sites where I had my shingles and determined that they were 100% healed. I'm still having occasional sharp shooting nerve pain in those areas, which he said could take months to go away and in some cases it never goes away completely. Overall he was happy with how I'm doing and I'm scheduled to see him again a month from today for a follow-up.

After that I went to see my nurse practitioner and oncologist. It was so nice to see them after almost a month of not seeing them. They confirmed that it was okay for me to get my chemo today. The computers were down at the time that I saw them so they weren't able to look at my CT in detail to see if there had been any changes in my chest/liver masses due to not having chemo for a while. I'm supposed to call them next week to get more detailed results.

The last few days I have been extremely tired. I'm not sure if it's from going back to work after everything my body went through or if it has something to do with tapering down my prednisone even further. I thought that maybe my red blood count was low, but it actually went up since I was in the hospital so that's not the cause of my fatigue. Hopefully as the long weekend goes by I will regain my strength and energy.

Chris and I usually spend Thanksgiving with his parent's, but since they're out of town this year, we have no major plans. My dad is planning to make some mole, mexican rice, and beans tomorrow so we will get to have a yummy Mexican feast instead (which I will very much enjoy since I don't care for turkey, gravy, stuffing, and all the rest of the traditional Thanksgiving foods). I made some bread pudding tonight (with semisweet chocolate, white chocolate, and Bailey's Irish Cream) for dessert...yummy!

Happy Thanksgiving to everyone!!

Back At Work

Today I decided to be brave and go back to work. I’ve been fever free since Saturday morning and feeling relatively well, so I thought why not. I really hope whatever it is that I had is out of my system for good now. The CT scan that I will have done tomorrow should confirm that. On Wednesday I will get the results and if all looks good I may be able to have chemo that afternoon. If not, I’m probably looking at next Monday. I’m still continuing to do my IV anti-fungal medication at home. It’s been so convenient to be able to do my own infusion without having to go in everyday…another advantage of having a central line (catheter).

Finally Home

I'm finally back at home after a long week and a half of being at Stanford. This was my longest inpatient stay not involving either of my two transplants. It was so nice to come home and take a nice long shower. I'm sure I will very much enjoy sleeping in my own bed tonight.

Tomorrow I have to go back to do my first antibiotic infusion in front of the nurses (to make sure I'm doing it correctly). Next Tuesday I'll have another CT scan done and Wednesday I meet with the infectious disease doctor's to follow up on the CT scan and see how I'm doing. When I met with them this morning they seemed to be concerned that the nodules in my lungs might not be a fungal infection after all since my fevers haven't gone away since I started the medication. They ran some more blood tests to rule out any other viruses. My oncologist is out of town and won't be back until after Thanksgiving so getting chemo next week isn't looking very promising. I'm going to try to get a hold of my nurse practioner to see if anyone else can make the decision for me to have chemo while my oncologist is gone.

Meanwhile I'm looking forward to losing all the water weight I gained in the last week and half, as well as getting back to work.

Thank you to all of you who posted comments, called me on the phone, and/or visited me while I was admitted!!

Fevers Continue...

I was supposed to be discharged yesterday, however that didn't happen. Saturday I spent the entire day with high fevers, Sunday was fever free, and then yesterday again was another miserable day with fevers (although not as frequent and as high as Saturday). Today has been fever free so far, however it's a "prednisone" day so it's not a surprise. Basically the days that I take prednisone I'm fever free, because it masks the fevers. The plan as of this morning is to discharge me tomorrow, but we will see if that actually happens. Today the home pharmacy nurse came and taught me how to infuse my own drugs through my catheter so that I could continue them at home. I also talked to my nurse practioner and told her everything that has been going on (she has been out since I was admitted) and she's going to talk to the doctor's on duty and call me tomorrow. I just don't want to be sent home until they have a pretty good idea of what this could be. I would hate to go home and then have to come back in a day or two because I've gotten worse.

Meanwhile my roommate is driving Chris and I nuts. She's addicted to pain killers and asks for them every 30 minutes or so. She sleeps about 23 hours a day and wonders why she feels so weak, tired, and her lungs are now filling up with fluid.

That's all the news for today...hopefully the next time I update this I'll be doing it from home :)

Fungal Infection?

First of all I want to thank all of you who left the VERY nice comments on my last entry. When I saw that I had seven comments I for sure thought it was an error on the page. I've considered a couple of times discontinuing my blog, because I wasn't sure if people were actually reading it or interested, but when I see things like that it reassures me that I should keep writing :)

So today was my first day trying out the food from the children's menu...peanut butter & jelly for lunch and chicken nuggets w/tater tots for dinner...I felt like I was in elementary school again! Tomorrow it will be cheese pizza for lunch and spaghettios for dinner :P I swear I'm re-living my childhood!

Okay now to the more serious stuff...I had my CT scan done this morning and they actually found something. Both of my lungs have some spots, which they think could possibly be a fungal infection. I had a fungal infection in my lungs after my first transplant and had been on medication for it indefinitely, but my doctor had taken me off of it recently, because it's very hard on your liver. The infectious disease doctor's believe that when I broke out with shingles it compromised my immune system enough to make me susceptible to a fungal infection. We definitely know it hasn't been there very long, because the PET/CT that I had done about a month ago was clear in those areas. So now I'm on two anti-fungal medications via IV along with the antibiotics. I also had a blood test done today to see if they can determine whether the fungal infection could be aspergillis and I'm supposed to have two tests done where they'll take a sample of some stuff inside my lungs (similar to a broncoscopy). The earliest I'll get to go home is sometime early next week if all goes well. Basically they're going to monitor me, see how I react to the medication, and make sure that it indeed is a fungal infection before sending me home. I'm still not sure how this infection will affect my chemo regimen, I'm hoping that I won't have to wait for it to completely clear up before I can have chemo again. Fungal infections can be difficult to treat at times and can take months to complete clear up.

Oh a favor for all of you...next time you're at your local Starbuck's, can you check and see if they have a green tea latte on their menu as a "special?" I had one in a Starbuck's up in the city the weekend of the Nike marathon and have not been able to find another Starbuck's that has them yet. Apparently it's a new menu item that they're testing in certain locations before introducing it to all their stores. Of course I fell in love with it and now can't get it! If you happen to see it, please send me an email and/or comment...thank you!

The Mysterious Ongoing Fevers

Today has been a very frustrating day for me. Since yesterday my fevers have been getting worse in terms of temperature and frequency. My blood cultures have all come back negative so there's no bacterial infection that is showing up (that doesn't necessarily mean there isn't one). My viral blood test for varicella came back negative also, which means that I don't have the shingle virus in my system anymore. They have discontinued the Acyclovir and my scabs are starting to fall off. The only problem now is that my skin is so itchy where I had all the lesions. The echo of my heart was also normal. This evening I had the worst fever yet, reaching 103 and not dropping below 102.7 (even with Tylenol). I have been laying in bed with ice packs all over my body. Tonight I had another set of blood cultures drawn and tomorrow morning I'm scheduled to have a CT scan (since I've developed a cough). A group of infectious disease specialists also came to talk to me this afternoon, but they weren't able to come to any conclusion as to what this could be. As you can imagine I'm growing very upset over all this, because not only is there no plan for me to go home at the moment, but there's no plan for chemo until this gets resolved. The good news of the day is that I found out I can order food from the children's hospital menu, which has a much better selection than the adult's!

Still At Stanford

I'm still at Stanford. The doctor's had planned to discharge me this afternoon as long as I would continue my IV antibiotics at home for the next two weeks, however this morning when they came in to examine me I spiked yet another fever. The whole night was full of fevers as well as this morning. Of course, nobody knows the source, but they won't let me go home until they have a better idea of what it could be. Meanwhile I had another set of blood cultures taken today and I'm scheduled to have an "echo" (ultrasound of my heart) done later this afternoon to rule out any infection in my heart. I think they still believe that the two main causes of the fevers could be 1) shingles or 2) my catheter.

Unfortunately the oncology unit is complete full so I'm in a double room and it's not the best situation. My roommate isn't the friendliest person. Fortunately, Chris staying the night with me hasn't been an issue.

The worst thing about all of this is that I'm not able to get chemo. It will be 3 weeks this Wednesday since I had my last dose, which is very scary. I'm keeping my fingers crossed that this resolves soon so I can get back on track with treatment and with work.

Admitted to Stanford

It's been quite a while since I've been admitted, but here I am once again. I actually came to Stanford this morning to get my labs drawn for my doctor's appointment tomorrow. When I was here I started getting some really bad chills and I got a high fever so they decided to admit me and do some blood cultures and give me some antibiotics through IV. I'm not sure what the plan will be for tomorrow or the following days, but I'll try to update my blog so you're all in the loop.

Chemo Still On Hold

I talked with my nurse practioner this morning and it appears that we're going to hold off on chemo until next Monday, Nov 7th. Originally when they found out about my shingles, my treatment had been postponed to this past Monday and then today. Unfortunately, not all my lesions have fully scabbed so they don't want to take the risk. I have several lesions that are blistery and very painful. I've been given an over the counter medicine to put on the lesions to help them scab faster, so I hope that helps get them moving along. This is by far the worst case of shingles I've had and believe me I've had my fair share of it many times.