Oh, the places you'll go

It may seem like a small thing but I actually got out of the house today. I spent the morning cleaning, run errands and such. When I stopped for gas I backed into a post and scraped the side of the car. Add 'backing up the car' to the list of things I shouldn't do anymore. I have to go get some rubbing compound to work out the scratches. Then I decided to go downtown for lunch. This was actually a big deal for me. I had my hand sanitizer and I'm full of antifungals, antivirals and antiobiotics so I'm armored against the flu.
I miss working downtown amidst all the hubbub. But that ship has sailed and having your startup get bought is a decent consolation prize. Working down on the peninsula is a whole different world. You have to get in your car just to go to lunch.
After lunch (Chili Up) and a fruitless search for an earpiece for my ancient phone, I decided to head home. Sitting in the Muni booth was a girl who worked for me when I was in the hotel business. Back then she and I had several conversations about her overuse of the phone for personal phone calls. So I just had to laugh and wave as she sat there with the phone in her ear.
My legs are pretty tired from all the walking so I may go sit in the hot tub if I can figure out how to get all my add-on equipment wrapped in plastic to keep them dry. I'm not sure how that will work out. It's hard enough getting wrapped up for a shower.
My hands are starting to hurt a little bit - oxycodone to the rescue!

Another good day

I had dialysis this morning then a clinic appointment this afternoon. My lab tests were good. I didn't need blood or platelets. That's unusual but a good sign that I can keep my platelets more than a day or two. My hands seem a bit more numb than yesterday. I found a dressing stick online so that will help me button my shirts.

A Good Day

No appointments today and I had a really great day. My energy is good and my hands don't hurt much. I've found I have better mobility when there's no pain. I had enough energy to do some cleaning. I got the bathroom and my desk cleaned. There were a LOT of papers that needed to be organized. Going to get some pizza and watch the Giants-Dodgers game.

Chemotherapy

I thought I had already written about this but I can't find it anywhere. The short story is that I won't be doing any more chemo. At last count I had done 11 different regimens although regimens like Revlimid aren't, strictly speaking, chemotherapy. None of the 11 is worked and we've run out of options. I didn't even respond to low-dose Melphalan, which is the drug used in the transplant procedure. So even if I could get to the point where I'm ready, there would be no point to trying another transplant.
The plan now is to keep me comfortable, continue the dialysis and treatment for fevers and such. I made a suggestion to Dr. Martin that we might try higher doses of some of the things that hadn't worked. Previously, I needed a lower dose because of my kidneys. Now I have dialysis which lessens that concern. I am now on Revlimid and it might knock the myeloma back some.
The painkillers are working well.

last night

Last night my hands hurt terribly. Nothing helped. I got some morphine and stronger painkillers this morning. I'm not able to button my shirt. I'm trying to find an assistive device to help.

Hands

Today was just dialysis then to the clinic for platelets. Nothing special.
I'm having more trouble with my hands. They are mostly numb - feeling like they've been out in the cold too long. There's nothing I'm unable to do for myself...yet. It takes me quite a while to button my shirt, though. I can't text on my phone very well but I can do it. I also drop a lot of things and I need to be careful that I don't accidentally burn myself.
The good news is that the results of the MRI showed that it's not being caused by problems with my spine. It's strictly a myeloma thing. Also, it showed that there is no invasion into my backbone and no stress fractures in my backbone. That is very good news.

Not much today

It's MUCH cooler today. Temps back in the 70s with a nice breeze. All I did was dialysis and my hematocrits and platelets are in the normal range. I have a day off tomorow. Numbness is spreading to my right hand.

HOT !!!

Whew - it was hot today. The clinic, like many places in SF, has no A/C. Plus it has no ventilation at all. I got some platelets then they sent me across the street to the LSU (Limited Stay Unit) for two units of blood and an MRI. So I was there all day, 8-8. The MRI was really long as they wanted a full scan of my back to see if that's the cause of the numbness in my hands. I think it was 45 min or an hour. Sure gives you a chance to practice your relaxation techniques.
It's supposed to cool off tonight.

A long day

I had dialysis then got some blood then went over to the clinic and got some platelets so it was a pretty long day today. My white blood cell counts are back to normal so I'm not neutropenic anymore. I can eat fresh fruits and veggies now.
I just got the bill for my latest hospital stay. It was $97,051.23 in total. My co-pay is $100. I don't know where I'd be if I didn't have insurance. I haven't been keeping a running total of my health care costs but I'm pretty sure it's coming up on the 2 million dollar neighborhood since I was diagnosed. That's a pretty ritzy neighborhood.
Tomorrow is the anniversary of the great earthquake and fire. One day I want to go to the celebration but it is so early in the morning (5 AM) that I just can't make it.

A day off

Well, sort of a day off. I have lots of things to do. I finally have gotten all my prescriptions filled and straightened out so that I understand what I'm taking. I also walked over to City Hall and paid my property taxes (late, because I forgot, which was annoying). It's the farthest I've walked for a while even though it's only two blocks. I walked around inside for a while as I hadn't been there in a long time. I think it's the nicest city hall I've ever seen.



















I also got a visit from a social worker who gave me a lot of good information about getting Social Security disability, hospices services and things like that.

Busy morning

I had a lot to do this morning. Dialysis at 5:30 then over to the clinic for a shot of Nuelasta and then to the pharmacy to pick up some supplements and a replacement prescription that had a broken seal when I originally got it. It's going to be tricky to take the supplements for my neuropathy and schedule them around the antibiotics (they can't be taken near each other).
I feel pretty good today. If my counts keep coming up I may go to the Cherry Blossom Festival this weekend in Japantown.

The usual

I'm getting used to dialysis it seems. I don't get chills or extreme fatigue afterward anymore. I think I might be going too often, though. Yesterday, they only took off .2 kg of waste. That doesn't seem like much.
I had a clinic appointment today and my white blood cell count is finally starting to come back up. The only trouble I'm having is that my left hand is going numb. It makes it hard to type. At least the Oxycontin keeps it from hurting. I'm going to try some B6 and amino acids and see if that helps. If it doesn't help I'll get some Neurontin on Friday.

A long visit to the doctor

I had an appointment at the doctor Thursday at 2. When I got there I wasn't feeling good and they found I was running a fever. Since I don't currently have much of an immune system, they decided to put me in the hospital. The clinic is directly across the street from the hospital but they put me in an ambulance anyway. That was amusing. When you come in on an ambulance, the ER team gets really active. I had 8 or 9 people descend on me. If you weren't used to hospitals I could see how the ER experience would be really scary.
Now my two-hour clinic appointment is turning into a week-long hospital stay. On Monday, they did a bone marrow biopsy on me and possibly I was going to stay for a transplant - another three weeks. I'm also getting all kinds of antibiotics to try to stop whatever is causing the fevers.
The fevers cleared up over the weekend with some anti-fungals and I'm not going to be doing a bone marrow biopsy so I just got home. Sitting here watching the Giants game and drinking a root beer (thanks Linda!).