A strange day

I've ben going downhill for the past few days. Sort of like the last time I had to go to the hospital except not disoriented. I went into the clinic for a bendamustine infusion. I was telling them what all was going on with me and they decided to put me in the hospital for some blood and fluids. The ER doctors, however, decided all I needed was the blood transfusion (and a cup of water). No matter how much I argued that my doctors wanted me admitted and given enough fluids to get my creatine down, they wouldn't budge. They sent me home and here I sit. I'll probably get a call in the morning to go back to the hospital.

Gung Hay Fat Choy!

It was a quiet weekend but I did manage to get started walking again. Saturday I didn't get too far - only four blocks. Sunday I managed to get in a full mile then another walk around the block later. I need to keep that routine going now. I drove into work today so we'll see if I still have the energy for a mile walk when I get home this afternoon.
I was wondering why I was seeing so many well-dressed Chinese people out and about Sunday morning and then I realized it is Chinese New Year. So Gung Hay Fat Choy y'all.

Doctor today

A pretty uneventful trip to the doctor today. I had been worried that my calcium and sodium levels might get too high so I cut way back on salt and dairy. Turns out I didn't need to - both were actually a bit low. I had been eating way too much sodium - mostly eating frozen and processed foods so I think I'll still try to keep it low. Healthier that way, I think. Mrs Dash and/or lemon juice substitutes pretty good for salt anyway.
I also finally got an application for a disabled placard so I can park free at UCSF (and meters and such). There is also a program with the Myeloma Foundation where you can get your parking and drug co-pay reimbursed. I got all my parking receipts together for that so it was a good, productive day.

Pills

My chemistry set:

Aftermath

I'm still working from home these days and slowly cleaning house. I pick up a few dirty clothes, throw them in the hamper, then rest for a while. It's a good system. I've put my Christmas decorations away as well.
I'm also still a little fuzzy from chemo brain which is why I'm not driving into work. I realized my memory of going to the hospital is pretty spotty. I remember finally getting to Mt Zion then nothing until pulling into the parking garage at the emergency room. I know they drained some fluid from my chest when I got into the hospital but I don't remember much about that either. Maybe it will come back eventually. I'm still being careful with my calcium and sodium intake and I have an appointment at the doctor on Friday.

home home home

I didn't get to go home yesterday as they had originally said. They wanted to keep me one more day to see how I did without getting any IV fluids. I got home about an hour ago and everything is fine.
I'm just reading my mail and catching up. The Concierge has an emergency spare kay safe for when you lock yourself out and I got to test it out today. When Ashley dropped me off at the hospital, she took my car home and dropped off my keys at the Concierge. I had a little anxious moment when I couldn't get my user id right at first but it all worked out.

Much improved

I feel much better today. I am breathing better and am not sleeping 16-20 hours anymore. The oncology doctors are trying a new round of chemotherapy that includes Thalidomide, which I have had before. And another drug that I can't recall the name. Emily and Lindasusan went by my place and picked up the Thalidomide I had on hand so we could get started right away.
The thing is, though, I think I have taken more pills than I ever have in a single day. I took 5 for breakfast, a few more throughout the day then 7 (I think) before bed. That's not counting all the Zofran, Atavan and chemo I've taken by IV. I'm sleepy now but my legs are restless so I'm walking around a bit.
The kidney doctors think that it's still a possibility that I'll need to do some dialysis but we're in "we'll see" mode. Until then, I'm on a restricted "renal" diet here. They have a procedure where they can set me up with a temporary thing in my abdomen and I can do dialysis from home. They are against that as they are afraid about me maybe getting disoriented again. Maybe I can argue them into it.

A turn for the worse

I had mentioned being extremely fatigued. Last Sunday I was still fatigued and I had an appointment at Mt Zion for a blood draw prior to another infusion on Monday at Parnassus. On the way there, I made a wrong turn and got very confused finding it. I was all the way up in Pacific Heights before I realized I was going to the wrong way then I was have trouble getting back. I finally made it and just then Ashley called and I told her the trouble I was having so she came over and met me at Mt Zion. The nurses did the draw and wanted me to go to the hospital so Ashley drove me over and helped me get checked in. They think my disorientation is due to kidney failure but but is getting better, although I am typing lots of b's for r's. I'm not needing to sleep all day anymore and this is the first time I've felt strong enough to get to the lounge and use the computer. I won't be checking my email as I imagine this computer is compromised with a keystroke logger. There was also some fluid in my lungs that they drew and it happened to have much higher levels of myeloma. So it's very unusual and the doctors don't have a textbook plan of attack. Right now I am taking dexamethasone to deal with the myeloma and Zofran and Ativan so I can eat.

Sunday

Only two things happening today. I have to stop at Mt Zion for a blood draw.I 'm going to ask them for some extra fluids. The Safeway guy shoould be here within the hour,I don't know about the things I ordered. Everything tastes like it has tabaso all over it. Other than that I'm going to lie on the couch and watch football.

Still tired

Still very very tired today. Dennis came and changed the dressings on my picc line. I had forgotten I needed a Zofran refill so I called that in. I decided to go get it myself instead of asking Jon. I was walking like a crackhead and stopping to hold on to every streetlight on the way there but I made it. Fortunately, walking like a crackhead isn't all that remarkable. I got my stuff and Safeway is delivering groceries tomorrow so I'm all set.

a new day

Feeling much better this morning. Right now I'm tired but much less tired. Nauseau is currently under control. Jon and April went and picked up a prescription for me (and some pizzas) last night. I think the Atavan they brought was a big hellp. I felt bad asking them to do it since the pharmacy is only a block away but it's an uphill block that I didn't think I could make. So I'm staying home, drinking water and taking it easy today. It's a nice day out. It would be nice to get outside if I can.

oh boy

Despite the good news on Tuesday, I'm having a bit of a bad time today. I've been sleeping 15 hours a day and have been very tired. I called the clinic and Lauren called in some precriptions for me and said to drink lots of water. If I don't start feeling better by tomorrow afternoon, I'm going to call and see about going in.

Late update

Yesterday I had an appointment at the doctors. I have a rule that I leave after I've waited for three hours. I've only had to walk out once so far but they don't keep me waiting for ridiculous amounts of time anymore. Yesterday I came close and Cheryl kept checking in on me to make sure I was still there. I had some blood tests and my hemoglobin is a little low so I'll get some Procrit on Monday if it doesn't come up.
I was really, really tired when I got home. I just got something to eat and went to bed and slept around the clock. I decided I needed to work from home today as I was too tired to drive in when I got up. I'm starting to feel a little bit better now.

good news

I just got off the phone with Sarah, the coordinator of the clinical trial I am on. When I started this trial, my lambda light-chain protein count (a measure of the level of cancer) was 18,000. My latest tests show it is down to 102.The results are preliminary but that's still a pretty spectacular start. Go carfilzomib!!

Our story so far

Just to catch you up with what I'm doing now: The drug I'm being treated with now is Carfilzomib, a new protease inhibitor that is in clinical trials. Previously, I've been through thalidomide, velcade, revlimid, VAD (vinchristine, adriamycin, dexamethasone), DT-PACE (Dexamethasone, Thalidomide, Platinol, Adriamycin, Cytoxan and Etoposide), then a bone marrow transplant with Melphalan. After that I was in complete remission for a few months before relapsing. After the relapse, I went through Hyper-CVAD (Same C,V,A, and D as before - I forget what the hyper part was) and anothee DT-PACE. I handled most of them pretty well except the ones with Vinchristine in them, That didn't go well.
The doctors are pretty confident in that they've had very good success with other people in the trial, all of whom have histories much like mine. The only difference is that I'm the first person at UCSF to go into this who has some renal insufficiency (kidney damage) so the procedures are a bit different for me.

I've felt pretty good the past few days. I got some whole blood on Monday. I think I need to be a bit more aggresssive in treating anemia. New year's eve was a wild party night here - I was up until well past nine o'clock.