Home by noon

I got done with dialysis at 8:45 and went over to the clinic and got home all by noon. A new record! I need to get the TV set up for the digital conversion but I'm going to nap first. I thought I was ready for the digital cutover on TVs, but apparently I'm not. I'm just a digital caveman.

Groundhog Day - more bad news and good news

I haven't put anything up for a few days as I've been in the hospital since Sunday. I guess I should have called a few people but since I knew what was happening (it was the exact same thing as last Sunday) and that I'd be home by Tuesday, I just said 'meh' to the whole idea.
Saturday I felt pretty fatigued and Sunday even more fatigued with almost no appetite. Sunday I started developing a fever that hit 101 and I started getting short of breath, so I went to the emergency room and they admitted me.
Dr. Warner, who handles me when I'm in the hospital, felt that it must be something I'm doing differently on the weekends. I take Septra on the weekends so maybe I have developed a reaction to it. This makes good sense as I also have a similar reaction to Dapsone, which is a similar drug. I'm going to leave off the Septra this coming weekend and see what happens. We'll replace it with a once-monthly, inhalable drug that I don't recall the name of right now. Also I was hypercalcemic so I am going to quit all my supplements.
The good news is that I am closer to doing a transplant. I am going to spend this week building my strength up. If I feel strong enough and dropping the Septra fixes my problems, I'll get started on the transplant procedure next week. If I don't feel strong enough, I'll just do another round of low-dose chemo. I'm also tapering off of the Oxycontin this week.

Neutropenia

Dialysis and more platelets today. My neutrophil (a type of white blood cell) count has fallen and I'm neutropenic. I had just bought a bunch of romaine lettuce and was looking forward to a Caesar salad. Now, I can't have any fresh fruits or vegetables (or cut flowers for that matter). I've thrown out more food this year. Maybe I'll get over it or will find someone who wants it.
Last Wednesday I stopped taking the Revlimid and it has helped my hands a lot. I'm going to stay off of it until I start another chemo round.

Bad news and good news

I've been in the hospital and offline for a few days. Sunday I started having trouble breathing. My friend Jack was over picking up a prescription for me so he took me to the emergency room. They couldn't figure out what it was immediately so they admitted me to the hospital and gave me oxygen, which helped a lot.
Most everything got ruled out by a chest x-ray and blood culture. The next possibility was an pulmonary embolism so they scheduled a CT scan to check it out. Everything on the CT scan showed negative for an embolism. Since they couldn't find a cause and I'm feeling very good today, they decided to send me home with a nebulizer and to come back in if it starts back up and the inhaler doesn't help.
The CT scan is where the good news comes in. The size of my lymph nodes and the myeloma lesions have been "significantly decreased". I don't have any numbers for comparison but it seems my current treatment is working very well.

TGIF

Another short day today. I got dialysis then some platelets and was home by 1. Very slow riding the Muni home as there had been an underground explosion in the Tenderloin. I've stopped the Revlimid for a few days and I believe my hands are a little better. I feel like I have better dexterity (maybe).

Yay - a short day!

Today I went to dialysis and needed to make sure that my potassium levels got back to normal. I got done with dialysis, went to the clinic for lab tests and found out I'm back to normal. I'm home by noon. All done with my day and I have tomorrow off - no clinic, no dialysis, no nothing.

All squared away

I finally got the oxycontin issue straightened out. I got a partial refill to last me until Monday, when they get a new delivery and can fill the remainder. It was partly my fault: I had gotten confused on the dosage and ended up using it all too early for a refill.
I also have been going back and looking at my Revlimid usage due to the problem with my hands. I told Dr. Martin I may be taking too much. We agreed I'll skip Wednesday and see how my hands are on Friday.
I had a clinic appointment today and my potassium has gotten too high again. They suggested I got to dialysis but I just have too many other things to due, I feel fine, and I'll be in dialysis anyway in about 12 hours.
OK gotta go, grocery delivery is on their way up.

Manic Monday

Dialysis Monday, then over to the clinic. I've applied for Paratransit, which is a public transportation service for the disabled. I can use it to get to dialysis at Mt. Zion, then the UCSF shuttle to Parnassus clinic, and then paratransit home. That will save me a lot (if it doesn't get shut down by budget cuts).
Both my platelets and my hematocrits were low so I had to get a transfusion of both. Red blood takes about two hours per bag and I always get two so it takes a while.
Now I'm just having trouble getting my oxycontin refilled. Since it's a narcotic, there are extra rules and I'm about out. Also the pharmacy keeps messing up - they tell me they have it and, when I get there, they don't have enough. I hope I get it fixed today. Another appointment at the Parnassus clinic this morning so I should be able to straighten everything out.

TGIF...

... and I'm wrapping up some stuff. I just finished the latest round of chemotherapy (Melphalan, Revlimid, Prednisone) and now it's just a matter of waiting and seeing what happens. My white cell counts will start dropping in a few days.
Today's blood test results were typical. I needed to get transfused with platelets. I'll likely need red cells when I go in on Monday. I'm a little low on calcium but no big deal.
Dr. Peng was talking about increasing my dialysis time from three hours to four hours. Three hours is a very long time so I tracked her down to talk her out of the four hour version. My creatinine and other kidney-related counts are looking good so there's no need for a longer dialysis.
My weight has been dropping some. I'm at 160 lbs and I was at 190 lbs when all this started. I talked to one nurse and she recommends more milk shakes. I can get behind that idea.
I also made an excellent discovery, food-wise: fresh sourdough bread makes outstanding french toast.
My hands are starting to hurt again so I'm logging off.

Chemo

I just got home from dialysis. I started a round of chemotherapy with Melphalan, Revlimid and Dexamethasone last night. So far, no problems except I was a little nauseous this morning during dialysis. I took a Kytril and it fixed me right up. I'm just going to take it easy today and see what happens.

Happy Memorial Day

I had my radiation treatment Friday and I felt just fine until about noon Saturday. My hands were even getting better. Then I got very fatigued and nauseous for the rest of the weekend.

Radiation Day

Today I got treatment at the radiation oncology department after dialysis. There's not a lot to tell about the procedure: you lie down on the hardest table ever created and they swing a machine over you that looks exactly like an x-ray machine. They take a picture, grumble over it for a bit then draw marks on you. After they had taken several pictures (and finished their grumbling), the tech came in and told me I was all done. I'm just having the one treatment so there shouldn't be many, if any, side effects.
Two victories today: I discovered a way to clip my fingernails and I finally found a coin purse at Cliff's Variety.

Tests and shots

Not much to tell today. All my levels on my blood tests are OK. I haven't had to have a transfusion in weeks, which is a good sign. I got a shot of Aranesp. That always takes a while since they have to call the insurance company to get approval. Since it costs >$10,000 per shot, I'm OK with waiting. I laid out my pills for the day this morning and decided to take a picture. Here is one day's worth of pills. It includes my vitamins and supplements but not all the Oxycontin/OxyCodone.
Right after I took this picture, I spilled a whole bottle of pills on the floor.

Several day's update

It's gotten chilly here - it's in the 50s this morning. I had some hand pain Monday night along with some swelling so I went into the ER. They gave me some Dilaudid and let me stay and get some sleep. Things are better now.
I talked to Dr. Martin about it on Tuesday at the clinic and I think I wasn't taking the pain meds correctly.
I'm going to start with some more chemotherapy (Melphalan) this week if I can find a pharmacy that carries it.
Today was dialysis. My platelets and hemoglobin levels were good. Maybe that means my marrow has less myeloma. I get weighed before and after the procedure and it looks like they take 0.2 kg out of me each time. That's not very much. Maybe it's concentrated e-e-e-e-vil.

The Weekend

Hoo - it was hot yesterday. I left the house about 9 and there wasn't so much as a puff of air blowing. The bay to breakers footrace goes by about 3 blocks away and I was going to walk over and get some pictures of people in costumes as well as nekkid people. It turns out that there weren't any shady spots for me to stand in so I turned around and came back home. I thought there would be a nice breeze by the pool but no luck. I went back inside and sat under the fan.
Dialysis was this morning and then I had an appointment with the radiation / oncology team this afternoon. I'm going to go in Friday after dialysis for a radiation treatment. That is supposed to help my hands and also to knock out some of the myeloma.
It's cooler today - it's only 63 and windy now. The pool has been emptied for repairs. Good thing they didn't try that yesterday.

To the hospital and back home

Saturday and Sunday my hands were hurting a little and Sunday evening my left hand started hurting quite a bit and swelled up about twice the size. It was about midnight but I couldn't wait until morning so I rousted my friend Jon out of bed to drive me to the hospital. I went to the ER and they got me in fairly quickly and gave me some Dilaudid and sent me upstairs.
They took some labs and cultures to see what's what. They decided it was either a clot or an infection. They treated for both by removing my picc line and giving me some heparin.By Monday evening the swelling was mostly gone and the Oxycontin took care of the rest.
I wasn't done though as my problems moved from my left to my right hand. I was having a lot of pain and there didn't seem to be any reason for it. Even the Dilaudid wasn't doing a very good job.
The next day the pain management team came to see me and looked me over. They decided it was a neuropathic pain (as opposed to...). We got a sort-of-decent treatment using oxycodone and oxicontin. Since that is working OK, they sent me home and we'll discuss some other drugs like Cymbalta or Lyrica.
That's enough typing for now. The Bay to Breakers footrace is Sunday. The race goes by only two blocks away and it's going to be hot so I'll get you a bunch of pictures of the naked runners - I know how much you like them.

walking

Dialysis and platelets today. Nothing new there. My hands were hurting a bit so I had them give me some Dilaudid. I've noticed that my hands tend to hurt more when I've been laying on my back for a while. That tends to make me think that the growths near my spine are the culprits in my hand problems. I have an appointment with Radiation Oncology on the 18th and we're going to use some radiation to shrink the growth.
I did a lot of walking today. I walked down the the Van Ness Muni station and back for my clinic appointment. That's about a mile round trip. Then, this afternoon, I walked up to Whole Foods on California St. That's also about a mile and uphill to boot.

Everything's good

I just went into the clinic today to get blood tests and everything is fine. I talked to Dr. Martin and we're going tomtry something new. We're going to try a combination of low-dose Melphalan, Dexamethasone, and Revlimid. Dr. Martin has changed his mind and now thinks that a bone marrow transplant is still a possibility. I've been taking Neurontin to try to reverse the numbness in my hands. It's not working. The MRI I did showed a plasmacytoma near my spine and he thinks that may be the cause of my hand problems. I am going to get in touch with radiation oncology to see if they can treat and shrink it.

I took this picture from the clinic waiting room. UCSF is perched on a hill so the views are great. This is looking east towards downtown San Francisco. I didn't try to take a panoramic picture but if you look north you see the ocean, Golden Gate Park (especially the DeYoung Museum) and the tops of the Golden Gate Bridge's towers.

A bad day that ended well.

Tuesday evening when I got home from the clinic I noticed my legs were weak. I chalked it up to all the walking I did. I sat down on the couch to read my email and, when I got done, I found out I couldn't stand up. After pulling myself up with a bar stool and doing some leg lifts I was able to walk again. It turned out that anytime I sat in a low chair or laid down I couldn't get back up. I was able to get set up so I could do some leg exercises while holding onto a barstool and get my mobility back when I got up in the night. I went into the clinic this morning and told them about it. It turns out that my potassium was way too high (7) and another drug I take causes some muscle wasting. Between the two, that's what was keeping me down. So they gave me some medicine to bring down the potassium and they sent me to dialysis. Afterward I felt fine and, even though I had been laying down all three hours of it, I was able to get up and walk just fine. I need to do more walking to build up my leg muscles. My potassium is much lower now and everything is OK. They sent me home and I have to go into the clinic again tomorrow. So all's well that ends well.

Using my hands

Today was only clinic in the morning and I got two units of red cells. It doesn't sound like much but it takes ~4 hours.
I'm getting used to my hands. My dressing stick came yesterday and it makes buttoning my shirt and zipping my pants MUCH easier. Unfortunately, it doesn't work too well on the button on my Levis. I finally got my pants buttoned using channel locks and a screw driver. Fortunately, I don't absolutely HAVE to have my pants buttoned. If they're zipped up and the belt is tightened, it's fine. Lids and ziploc bags are difficult so I don't close them all the way. Same thing with my prescription bottles. I'm learning how to rearrange things to make it easier. Nothing goes in the front pocket of my jeans - I just can't fish it out. I've pared down the number of things I carry. I only carry my wallet, bus pass and keys. Coins are also out until I find a coin purse. I drop the coins and can't pick them up. I've been to two drugstores looking for a coin purse. I think I'll try some five-and-dime stores. I think I'll go to Cliffs in the Castro either this afternoon or tomorrow.
I need to get out and walk more. My legs are really weak. I can manage ordinary stairs but the steps in the back door on Muni are really steep. I barely got on the train and I had to haul myself up with my arms on the bus.

Yay!!! Disability checks came. $959 per week - good money.

Monday

Dialysis and platelets today. Got a refill for my oxycontin. Also my dressing stickcame so maybe I can wear a button-up shirt. Typing makes my hands hurt so I'm keeping this short.

Back to the ho-hum

Dialysis this morning and platelet transfusion this afternoon. Nothing unusual. It's cold and rainy outside but I have a fire going in the fireplace and a mug of hot cocoa so everything is just fine.

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!).

C-c-c-old

I just about froze to death at dialysis today. I went for the full three hours and then I got two units of blood after. Every other clinic or treatment center I've been at has always made it a priority that the patients be comfortable. That's not the case here. They don't have blankets or anything to keep you warm. They're all about getting you hooked up and getting you out - an overabundance of efficiency.
The other odd thing I noticed today was the racial makeup. I am the only white person in the room for the duration of my treatment. Everyone else is black.

Another day

Jon helped me get to the Mt. Zion clinic for some platelets yesterday. Then we went to the grocery store afterward. I had to get some prune juice. I wonder why they don't call it plum juice? You surely can't get much juice out of prunes. I've been having a terrible time with constipation and diarrhea. I'm either totally blocked or totally explosive.
I'm just staying in and doing nothing today.

Friday

Friday I had a dialysis appointment and an appointment at the clinic to get some platelts. I was so tired and dizzy I had to call the clinic to let them know I couldn't get there. I rescheduled to go into Mt Zion Saturday and Jon is going to help me out.

Well, rats!

I had torn a shoulder muscle a few weeks back. It was slowly getting better and was almost completely healed. Then last night I re-injured it getting out of bed. It sure hurts but I have some oxycontin so at least I'm comfortable.
No appointments today so I'm taking it easy.

dialysis

I had my first dialysis this morning. It was at 5:30 AM, which is too early to do anything. It was only a 90-minute session. The nurse, Mabel, was really nice but she talked really fast and it's hard to listen to a fast-talker early in the morning like that. Anyway, I believe I feel a small bit better. I have a day off tomorrow - no clinic, no dialysis, no nothing. Then I go back into the clinic at 2 on Friday. My next dialysis is Friday morning. I'll go for two hours, then next Monday, I'll do the full, three-hour session.

Nothing today

I went in and had some lab work done today but that was it. I am set up to go to dialysis in the morning at 5:30. I'll have appointments every Mon, Wed and Fri. They're going to start slow so tomorrow will only be 90 minutes or so and will work up to be 3 hours by next Monday.

Monday

Today I just got some platelets and had my Tessio catheter flushed. Dialysis is definitely going to happen - I'm just waiting to get an appointment sometime this week. I think that will make me feel better. It seems like EVERYTHING hurts. The worst is my left wrist, which I can barely bend and can't lift any weight. It's also very hard to send text messages. After that, my right shoulder hurts at the muscle I tore and now the shoulder joint has started hurting. My hips and ankles also hurt so walking more than a block or two is out. I think that all my joint problems are caused by a build-up of toxins in my blood and that dialysis will help that.
I saw Dr. Martin again today but just in passing so we didn't talk much. I want to try get get a date for the transplant. My disability runs out May 17 so I need to be ready to go back to work then.

Catch-up

Yesterday I went into Mt Zion for two units of blood. Also, Dennis, my home nurse came by to change the dressing on my picc line. I was so sleepy all day yesterday that I just slept through most all of the four-hour procedure. I should be feeling better today but I'm not really. I have to finish my taxes today and make sure I've exercised enough stock options for the next month or two. I don't know when my disability payments will start arriving but I better be ready for it to take a while.
Also, I have a new nephew Luke Joseph Williams was born this morning, so that's a good thing.

Friday

Today was fluids and platelets. I talked to Dr. Martin for a bit. I ran into him as I was leaving and he wanted to chat some. He isn't too concerned that my counts aren't coming back. He thinks we need to get started on the transplant soon before we lose the window that was created by my last dose of Melphalan. He also says he wants to start me on dialysis next week. I agree with him. I'm having a lot of stiffness and pain in some of my joints so maybe dialysis will help. I go into Mt Zion tomorrow for a couple of units of blood.

Nothing new

I went in and got some fluids and sodium bicarbonate today. They didn't take any labs so I don't know where I stand today. I go in tomorrow at 8 for blood tests, fluids and (probably) platelets.
It's a really nice, sunny day today. I wanted to go for a walk but my hips still ache too much so I sat in the plaza and enjoyed the sun for a bit.

Creatinine

My creatinine is up to 6.6 today. I think maybe I'm going to have to have dialysis soon. I went into the clinic today and got some fluids. I talked to Derek a bit about the pain I'm having in my joints. He also thought maybe it was the Nuelasta taking effect and starting to build white blood cells. In the past the pain was in my bones, not my joints. We'll see if my counts start going up over the next few days.

Night at the LSU

I went into the clinic yesterday afternoon for platelets. After my blood tests came back, they also wanted to give me a couple of units of blood. It was getting too late in the day for them ( the Hemotology / Oncology clinic) to get it done before they closed so they set me up over at the LSU. Since a bed wasn't going to be available until 9, I decided to go ahead and spend the night there. Two units of blood takes about 4 hours to transfuse.
It wasn't as bad as I expected. They had too many lights on but it was quiet. I also had the absolute worst mattress of all time. Most of the hospital mattresses have a pnuematic system that adjusts them to avoid bed sores. I woke up and my mattress was sloping to the right. I'm glad I didn't slide out.

Sunday

I'm a collection of aches and pains today. I hope that means the Nuelasta is working in my marrow to create some white blood cells. Vicodon before bed tonight for sure.

It's Friday

I've been into the clinic every day this week. It sure beats going to the hospital. Today I just got some fluids and sodium bicarbonate to balance out some electrolytes. I'm feeling a little better except I still lose my appetite of an evening. I may try to eat a small can of peaches soon. I'm also very tired. It's still very hard walking over to the pharmacy. That uphill block really slows me down but I think it's important to get the exercise. Also, my shoulder is almost completely healed. I actually slept in my bed last night - I could finally lay down.

More blood for me

I went into the clinic again today. The plan for today was to send me across the street to the LSU (Limited Stay Unit). It's a large, open ward with about 20 beds for patients who will be in for less than 24 hours. I got two units of blood and some fluids. I am getting a lot of blood to support me after this last chemotherapy. I don't know what will happen when I get a larger dose of the chemo for my transplant.
I was pretty tired this morning but I feel a little better now. I haven't been walking much lately - it's just too hard.

a little better

My creatinine has come down some today. I got some more platelets and some more fluids today. I'll go in tomorrow and get some more fluids and a unit or two of blood. My shoulder is starting to feel a little better. Got to get back to work on my taxes.

schedule change

Yesterday at my clinic appointment, we found that my creatinine was getting much higher. Dr. Martin decided I should come in every day for fluids. I'm feeling OK except my shoulder still hurts. Usually, if my creatinine gets this high, I'm back in the hospital and not feeling well at all. I guess I'll keep going in until I get enough fluids to take care of it.

taking it easy

I've been drinking milk shakes and taking it easy. Between the vicodin for my shoulder and the Marinol, I'm not real sharp so I sleep a lot. I had a clinic appointment today. My creatinine is 4.6 or so. Usually when it has gone up that much I'm not feeling well but I feel fine today. At the clinic I got some fluids and some platelets (after I fought my way through the old lady perfume).

A crazy day

Yesterday I woke up with a pain in my shoulder. It got worse as the day wore on and the catheter site started bleeding as well. I was worried that the catheter might be getting infected so I went to the ER about 10 PM. They did some x-rays and ultrasounds and ruled out an infection. They said that it's likely to be a torn muscle or some muscle injury. We're all mystified how it happened, though. They ended up giving me some morphine and sending me home - which was just what I needed. So I'm eating vicodin nowadays.
I had another appointment at the clinic today. I got some fluids and some platelets and that should stop the weeping around my catheter. I'm still very neutropenic so I'm staying in and taking it easy.

This week

This week I have clinic appointments on Mon, Wed and Fri. My Monday appointment went fine. All my numbers are good, except I'm neutropenic (low white blood cell count). Right now the plan is to wait for those numbers to recover and schedule a second bone marrow transplant in about four weeks.

home

I thought I might stay through the weekend but they were in a hurry to get rid of me today. They gave me some platelets and sent me on my way about 4:30. The house is a bit of a mess so I'll spend the weekend cleaning. I have to go into Mt Zion for a shot of Nuelasta and some fluids tomorrow.

better and better

My creatinine is down to 4 and I'm feeling pretty good so I think I'm going to start pushing to go home. I've gotten my disability papers all filled out and sent in so I can take some time off work for a while.

Back on 11

They moved me back to the 11th floor last night. Eleven is the hematology/oncology floor and it is much quieter and the nurses are nicer. I'm still in a double room but my roommate this time is quieter. He's on quite a few meds so he doesn't have much to say.
Everything is fine with me - I need to do some walking around today.

new catheter

Finally got the new catheter after waiting all day yesterday. They put me on the 14th floor. The have telemetry monitors so they can monitor my heart rate more closely. It's back to 50-60 so I think I'll go back to the 11th floor soon. I hope so - when I get here I was sharing a room with a guy from the psychiatric ward. He had to have a 24-hour sitter with him and they both liked to talk. Now I have an older Chinese man as a roommate and his entire family visits. I want to get back somewhere quieter.
I got a dose of the Melphalan last night and everything is going fine. I don't know how much longer they'll keep me here.

Delays

I got down to surgery for the catheter but my heart rate was way low (30-40) so they sent me back. Maybe we'll try again tomorrow.

Tomorrow

I just got done talking with Dr. Martin. Tomorrow I'm definitely getting a catheter for dialysis. Tuesday early I am getting some Melphalan chemotherapy. It's going to be a fairly big dose - about 1/3 of what I got for my transplant. If we can knock the myeloma counts down with this dose, I may be ready for another transplant in a few weeks. Knock wood.
I have my Jewish, Buddhist, Hindu, Pagan and Christian friends and family thinking good thoughts so I think all my bases are covered.

Dialysis?

They keep going back and forth on whether or not to start me on dialysis. The nephrology team stopped by and said I was scheduled for a catheter on Monday but I'll believe it when I see it.
In the meantime I'm taking velcade and dexamethasone. So that mean I'm hiccuping. I am starting to feel better. The parents on my roommate went out for smoothies and I gave them directions to Jamba Juice so they brought me one back. I highly recommend smoothie therappy.
I'm all out of paid time off so I'm going to start on short-term disability, which pays some percent of your salary while you're on it.Only problen I'm having with that is that the social worker who helps me get it filled out wears some old-lady perfume that makes me nauseous. So I have to get her out of the room as soon as possible instead of asking any questions.

I'm back

I got a call from UCSF last evening. The nephrology doctors had reviewed my most recent blood test results. They wanted me to come back in. SO here I getting fluids and being poked and prodded. One of the oncology doctors told me they were pretty sure I was going to need to go on dialysis but I'm going to wait to hear that from a nephrologist.

Velcade Day

I haven't been feeling very good the past few days. I went into Mt Zion on Sunday for fluids and a blood test. My creatinine is sneaking back up. The fluids made me feel much better and I was able to eat something. Today I am still very weak and short of breath but I was able to (barely) climb down the stairs from the 9th floor when we had a fire alarm. I don't know what caused the alarm.
I was supposed to go in for some Velcade and Melphalan. It was originally going to be Bendamustine but we can't get approval from the insurance company. Dr. Martin is on vacation and the pharmacist was pretty strongly against the Melphalan because of my kidneys. The charge nurse that was there said that it should be OK as they have done that level before for similar patients. I decided to go with the pharmacist's opinion until she could talk to Dr. Martin and work it out. So all I did was Velcade, which I have done before with only very limited success.
The pharmacist's name was Julie, who looked a great deal like my sister Julie, who is also a pharmacist. How odd.

Quick Appointment today

I got in and out in just a little over an hour today. That's the fastest ever. By contrast it was over two hours waiting on the nephrologist yesterday. I think I'm going to cancel my appointments with the kidney doctors - I wait around enough as it is.
I thought I was supposed to get an infusion of Bendamustine today but I got my days mixed up. It's supposed to be Friday, I believe.
One good thing: I am starting to be able to taste things again.

Quiet Weekend

I went into Mt Zion today for blood tests and fluids. Everything is just fine. I thought I might get stiff in my leg from having the filter put in (to keep clots from migrating to my lungs) but I haven't had any problems with it. I'm starting to get back on a regular sleep pattern again - it always gets messed up in the hospital. The only bad thing is that now I can't taste anything. Everything is bland. Hopefully that will go away soon.

Back Home

I got home from the hospital last night about 10. I had gone in for my clinic appointment last Thursday and they wanted me to go to the emergency room. I went over there but they just gave me some blood and sent me home about midnight. I got a call from the clinic on Friday evening and they told me there was a room ready and I should go back to the hospital. My creatinine, calcium and other stuff were very high and my platelets were low. So I spent the week getting pumped full of stuff.

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.