Update From the Hospital

Last night was not one of my best. Chris ended up not being able to stay with me because they couldn't get a cot or recliner for him. He went home around 11pm. At that time I was feeling okay, but about 30min later everything went downhill. My fever spiked up and the doctor ordered that I have blood cultures done. They drew half of the blood from my hickman and the other half peripherally. About an hour after the cultures were drawn from my hickman, I started to have rigors (violent shaking). I called the nurse and they got me some Demarol (narcotic) in me to stop the rigors. Whenever I've had these in the past, Chris has been with me to calm me down while they got the drug in me, but not having him there made this episode extremely difficult. That knocked me out right away for about an hour, which was the only sleep I got the entire night. I did take a few 30min naps throughout the day, but can't imagine that I've slept more than 4hrs in the last two days.

When I was admitted Tuesday morning, the plan was to possibly do the biopsy that evening/night. Last night they said it would most likely happen this afternoon. This morning they said it wouldn't happen until tomorrow morning. And as of this afternoon it's now tentatively scheduled for sometime around 3-4pm tomorrow afternoon. I've been told that I cannot have any food or fluids after midnight tonight, which is absurd. I'm fine with no food, but not even water for that length of time is unheard of. Especially with the high fevers that I'm having, I'm drinking a lot more than usual. They will probably have to give me fluids via IV starting in the morning, which I'm not looking forward to. Everytime they've done this in the past, I've seemed to gain 5-10lbs in water weight. So gross!

The last that I heard is that I will most likely be sedated for the procedure and they might be taking samples from two different areas of the lung.

A Night In the ER

After not hearing back from my oncologist or NP all day yesterday, I finally decided to make a call to the "on-call" oncology doctor around 7pm. I explained my symptoms to her and she said she would call me back with what I needed to do. By 8:30pm I hadn't heard from her, so I called back and she said I needed to go to the ER so they could run some tests to eliminate the possibility of me having a clot in my lungs (due the chest pain I had been having since the weekend).

We were at the ER by 9pm and didn't leave until 6am this morning. Throughout the nine hours that Chris and I were there they did an EKG, chest x-ray, some blood work, and an angio-CT. Everything came back normal except for the preliminary CT showed some new small nodes in my lung since the last one. It wasn't made clear to me if they were referring to the CT that I had done last Monday or the previous one done in June. They finally released me and said to follow up with my oncologist since there was nothing they could do - a complete waste of time!

We ran home to take a shower and then we were back at Stanford for my 9am appointment with the infectious disease doctor. He went over my CT from last Monday and the preliminary results of the one taken last night. Because they're unsure of what the new area in my lung could be, he decided it was best that I have a lung biopsy done ASAP. To move things along quicker it was decided that I be admitted.

So after close to 24 hours of no sleep, I was headed to the main hospital for admission. At first they put me in a double room, but thankfully this afternoon they moved me to a single room. There's still no scheduled time for my lung biopsy, but we're hoping it will be tomorrow. Because my platelets are running low from chemo, I will need a platelet tranfussion before they can do the procedure. Meanwhile, I may be starting on some IV anti-fungal's to possibly prevent this from worsening if it is indeed a fungal infection. The doctor estimates I will be here at Stanford for 3-5 days.

As usual I have my laptop with me so I can do some work and update my blog.

A Miserable Weekend

Neither I or my NP were ever able to get someone to see my in the infectious disease clinic last week as planned. I finally did get scheduled for this coming Tuesday, when my infectious disease doctor comes back from vacation. My NP wasn't too thrilled with this decision, but since I wasn't feeling too bad she thought it was okay to wait.

Thursday night things started to go downhill. My fevers started to spike and get more frequent and I also started to develop a very constant cough. By Friday morning I was feeling so awful that I couldn't go into work. I worked from home as much as I could throughout the day. It always amazes me how I seem to accomplish a lot more when I'm working from home rather than being in the office. I feel like the amount I get done in 10 hours at the office, I can get done in 4 hours at home.

Saturday night was awful. In the middle of the night I started experiencing chest pain any time I took a deep breath or coughed. My fevers were also getting higher and I felt so weak. This morning I felt a little better, but struggled throughout the day with chest pain and shortness of breath. I've been taking Tylenol pretty much every 4-6 hours and at times my temperature doesn't even go down to normal.

Fortunately my oncologist is back from her vacation tomorrow and I'm going to try to connect with her first thing in the morning to see if she has any suggestions. My concern is that whatever I have is only getting worse without any treatment.

Preliminary CT Results

I spoke with my NP earlier today about my CT results. She said only the preliminary results were back and they still had to be reviewed by another attending radiologist. The preliminary results showed that the mass in my chest and liver are stable, but there's a new area of concern in my right lung. They believe it's some type of infection, but haven't ruled anything out. My NP was going to go take a look at the films herself and also call my infectious disease doctor to get me in right away. I should hopefully get in to see him sometime this week and will know more then.

4 IV's - 1 CT

Last night I went in for my CT scan. Amazingly I got called in right at 6:30pm which is when my appointment was scheduled for. I went through the usual routine of changing my clothes and hopping into the scanner. They took the initial scan without contrast and then told me I needed an IV because they couldn't use my hickman (not a surprise).

The doctor that came in to do my IV looked rather worried and asked the technician if he was sure she had to do this (that made me feel really great). He told her he could call another doctor or nurse, but she said "I'll give it a try." So she comes over to my arm and says to me "you're veins are terrible, I don't see them." I was rather shocked, because the usual response I get is "you're veins look great" - yet when they go in they realize they're not. So now that I'm all worked up I ask the doctor again if she really wants to try because it's not easy to get an IV in me (that's why I have a hickman...duh). She still wants to proceed using a small 24 gauge needle.

• Attempt #1: fails to get blood return and somehow manages to kink the plastic inside my vein into a position I didn't think was possible.
• Attempt #2 (other arm): fails to get blood return, kinks plastic again, and my vein starts to pop into bubble (all while feeling extreme pain). That was the end of her.

The technician now calls a nurse from the main hospital and I wait 30 minutes for his arrival. He arrives and looks at my arm and says "the only way I can get an IV in you is to you use a bigger needle." I say "really, because every time they use a big needle they don't succeed in getting the IV in." He says "yep, that's the only way." I somehow agree.

• Attempt #1 (back to first arm): jabs the thickest needle I've ever seen in my little vein and fails to get blood return (I've never felt such extreme pain getting an IV).
• Attempt #2 (back to other arm): uses the small needle I suggested and finally gets the IV in.

He then tells me we will have to watch it carefully, because most likely some of the contrast that will be pushed in through this vein will come out of the previous puncture that the other doctor had created!! Fortunately, there was only a little bit of seeping that came out while they were pushing the contrast in. So an hour and a half later I finally get to go home...

I wasn't able to get an appointment with the infectious disease doctor (the earliest appointment available was in October) so I will call my NP tomorrow for the results. Tomorrow will be a tough day. In fact this morning I woke up with extreme nausea and had to come in to work late...I wonder if it's from the thought of getting results tomorrow...

No More Predisone - Hurray!

Yesterday after work I went in to get my labs drawn as usual. Thankfully, my Hickman behaved and the nurse was able to draw blood pretty easily. I'm really glad that I had my labs drawn last night, because the lab machine was down all day today and people that had labs drawn today were not able to get results. This of course caused major delays so I didn't see my oncologist until two hours after my scheduled appointment.

My NP was out of town so I didn't get to see her which was pretty dissapoiting. She always has great stories for me and we usually chat for a good 20-30 minutes. I did get to see my oncologist though and she said my counts all looked great. I think cutting the chemo back to 10 days instead of 14 days made a big difference. We're going to continue on that schedule so that I don't have to delay anymore treatments. I asked her about the reasoning for me still having to take prednisone and she said there really was no reason for me to continue on it since it's been over a year since my bout with GVHD. This means no more predisone, I can stop taking it immediately....yeah!! I've been waiting for the okay to get off of it for over a year!! The drawback of course will be that my fevers will get worse since the prednisone tends to control them or make them slightly better. I would rather take more Tylenol and even risk feeling more miserable over taking prednsione. It's definitely by far the drug I hate most...more than any chemo I've ever had to take. Hopefully I will be able to stay off of it and my bone loss will decrease, my muscle loss will stop, and my pot belly will start to go away.

This coming Monday I have my CT scan. As usual I'm terrified and will probably be very anxious the following days until I get results. I've been coughing a lot the last two weeks and have also been having some shortness of breath and slight chest pain, which is very worrisome. I'll either call in on Wednesday to get the results from my NP or get the results from my infectious disease doctor when I see him next week.

Work has still been pretty busy. Today I worked from home and tomorrow I will go into the office in the morning and take the afternoon off since my friend from Japan is visiting.

A Tough Week

I started my daily chemo regimen last Wednesday and haven't felt so great since. I've been very fatigued the last few days and the high fevers have come back once again. It's really difficult when I'm at work, I can barely concentrate and make it through the day. The whole time I'm thinking of how much I would like to be in my bed sleeping. I usually get some chills with the fevers, so I have a heater under my desk running constantly to keep me warm. When Chris picks me up from work I sleep the entire ride home and then I end up taking a nap or laying down as soon as we get home.

Work is going well although I'm still putting in some long hours. I do have to admit that I'm quite stressed with my daily responsibilities and most days I have to leave my building for a few minutes to walk/vent. I usually work from the moment I get in to the moment I leave and then some more at night from home. I'm lucky if I can get out for a few minutes to catch my breath.

We haven't made any progress on the house, I think it's hard to get back into it now that we've stopped for a few weeks. Our new gas stove has been having some problems. The oven stopped functioning and it appears that the fan sensor broke. We had someone come out to take a look at it and it should hopefully be fixed next week. No baking for me for now.

Next week my friend from Japan is coming to visit and stay with us. I'm very excited to have her come, it's been over a year since the last time she was here. I'm hoping to be able to take some time off work to spend with her.