Tuesday, August 30, 2011

1 for 4 (pending a more definitive trend)

Well, even Dr. Phan was happy today. My creatinin was down to 7.6 this week. It had been up to 8.5ish....on the edge of dialysis. As we all know by this point, the kidney function is a reflection of the power of the cancer.  The higher the creatinin in the kidney, the more powerful the cancer and less effective the treatment....and you know the rest of this story.  It's been gaining steadily for the past few weeks. Today, good news, it's down, likely meaning the reconfigured chemo (treanda with revlimed on the way) treatment could be working.  So I'm happy, Leslie and Dr Phan are happy. But we need to see a trend to definitively say it is working.  Later this week, more blood work. That will help answer the question. And next week, a bone marrow biopsy to give an even better picture of what's what.  But fucking finally, that's what I say.

My red blood celll count is hanging in there, but we're doing a transfusion this Thursday, just to get the blood count up a bit and get my energy up. The transfusions at this point are no big deal.  White blood cells also hanging in there, a good thing.  One other difference with the new chem drug is that I've been feeling real naseous the past few days. Haven't thrown up but been pretty close the last two days.  With all the previous drugs, I haven't had any stomach issues, other than a newly formed layer of fat. The doctors say the level of side effects experienced does not equate to the effectiveness of the drug, but I beg to differ. The fact that I've been feeling bad, to my mind, means the shit is working.

And here's another odd thing....You know how when you close your eyes and you try and focus on what's right in front on you (other than closed eye lids), and you can make out shapes and movements and shadows. Lately, when I close my eyes, it's been real dark and I see real scary, ominous shapes moving in front of me. Weird, right? Well, the past couple days I close my eyes and it's been brighter with less intimidating shapes and images. Trippy. What's it mean? Hell if I know. I'm not a spiritual or religious person, but I've been trying super hard to have positive thoughts, and perhaps that is working as well. The brighter images behind my closed eyes means something, I'll tell you that.

So chew on all this and I'll update more later this week

Saturday, August 27, 2011

0 for 3

Holy shit, what a busy week. Monday was kidney doctor. Tuesday chemo. Weds was second kidney doctor at Cedars. Thursday was Berenson & Phan. Friday was chemo and Phan.  The end result of all these appointments? My kidneys are worse than ever...I'm inches from dialysis. Everything still works, so I'm fighting the dialysis.  The problem is that the kidneys are a result of the myeloma. So what this means, is that my treatment isn't working. The myeloma is getting worse. I don't feel any worse or different, even worked this week.

But I'm 0 for 3 on treatment. We finished up cycle 1 of the latest regimen...thalidomide, which is supposed to be super powerful. I've handled it pretty well. It tires me out at night, but otherwise no side effects. No success though, so thalidomide is already out the window. Yesterday we started a new more powerful regimen which include Treanda (never heard of it) and Revlamid.  Wrapped up my treatment of Treanda at 3 yesterday and basically slept from the moment I got home until now. Phan says we are basically throwing everything possible at the myeloma. Lots of guess work at this point.  Something better work and soon. This is no joke!!  Also going to work on seeing another myeloma specialist to see if we're missing anything in terms of treatment or results.  Berenson is good, but don't want to miss out on anything.

Phan is going to do a bone marrow biopsy in 2 weeks, this will answer some questions as well. It's all scary and frustrating,  to say the least.

A few years ago, my nephew Dillon and I decided to climb Mt Whitney in one day. Early in the day, we were laughing at these other people with all their equipment, who were saying how hard climbing the mountain was. We figured it would be a piece of cake for us. By the time the sun was setting that day, we weren't off the mountain yet and realized that it is a difficult task, and that we are pretty stupid. At one point my leg was stuck in between a patch of snow and a rock, and I thought to myself that I'd be spending the night on the mountain. But we made it up and back in one day.....and as time has gone by we are still dumb enough to say we'd do it again.

I think I approached my myeloma treatment the same way. I figured early on, that I can do it, no problem. I had no reason to listen to folks who said how hard it would be. Well, I was wrong.  This shit is a lot of work and a real long process.  But we'll keep fighting.

Tuesday, August 23, 2011

I hate roller coasters

We go to Berenson and he says there are encouraging signs. Awesome! Then we see Phan and he paints a less rosy picture. Not so awesome. Kidney functions are worse than ever, but they are still working. Ummm...ok. A month ago, kidney doctor was all panicky over state of kidneys. Now she is all casual about it. Head scratcher. Going to see another kidney doctor tomorrow for another opinion. Need to get those tricky little bastards under control.

Still been getting low grade fevers but today was chemo and it's likely the steroids in the chemo are preventing a fever today. Plus my voice is gone, which seems to happen after chemo.

So tomorrow I'll work half day then go to new kidney dr.

So as you can see, this myeloma ride is a real roller coaster. And I don't like it. Then you throw in all of life's stresses which get magnified by illness, and my head is ready to explode. I think for both me and Leslie, we feel like we're 4 months in and no further along. What the hell?

My 50th is less than 2 months away and I can honestly say that I didn't envision dealing with cancer as how I would be celebrating. I was super excited to turn 50. Not so much now.

Sunday, August 21, 2011

Sunday humday

Friday and Saturday were good days. Saw friends, went out, and felt pretty darn good. Today? Super duper tired all day. So its been naps, tv, bills and that's about it. Still getting low grade fevers but catching the fever early with tylenol does the trick.

Busy week coming up. Monday is lab work and kidney doctor. Tuesday is chemo. Thursday is back to Berenson and Friday is chemo. Also going to try and make it to work.

Thursday, August 18, 2011

Finally

One of the toughest things about this myeloma situation is the mental part of it. I've been waiting a while for some positive news.  The worry and fear can really take a toll on a person.

On Tuesday, I saw Dr Phan. He said, yes fevers are cancer related and in all likelihood it meant that the cancer is getting worse. He thought that Berenson might want to change up my chemo mix to deal with this.

Well, today I saw Berenson and he said that the fevers aren't cancer related. Myeloma doesn't lead to fevers. And In fact, in looking at some of my numbers, he sees some encouraging signs and thinks the treatment is probably working...so no changes in the chemo mix. Next week we start cycle 2 of the new regimen.

So finally good news!!!  Now let's kick some ass.

Tuesday, August 16, 2011

This week

Obviously things can change. But here's the schedule for this week. Worked yesterday. Home today, appointment with Dr Phan in the morning. Work tomorrow and Thursday. Off on Friday. At some point we'll see Zoller, the kidney doctor. I thought Berenson was this week but it's next week. Still getting fevers, but learning how to control them.

Drug Supply

Remember last month when we were scrambling to get Doxil? It seemed odd that a vital drug would not be available. Turns out this is a growing problem. Who's to blame? Perhaps everyone. Interesting article...

Drug shortages set to reach record levels

Sunday, August 14, 2011

Home!

Says it all

damn

what a crap ass day yesterday. here's how it went.....going home, not going home, going home, not going home, and finally going home. Leslie came to get me about 7 pm. We were putting my stuff together and my temperature was taken one last time. 102.5. not going home.  it had been fine all day, but turns out there was an issue with a broken thermometer, that I kind of knew about, so my earlier readings might not have been accurate. the end result....still in hospital.

all tests for infection have been negative. good news. but it's likely the fevers I've been having are due to the cancer. bad news.

Saturday, August 13, 2011

hospital blur part 2

So I fell back asleep, only to be woken up by a tag team of doctors. Nothing to report. Blood cultures not back. Then a series of questions. Any pain? Swelling? Nausea? Headaches? Blah? Blah? Blah?  Nope. Nope. Nope. Nope. Nope. Then doctors ask if I have any questions. When can I go home? Oh well, that depends on your blood cultures, if your fever doesn't return, etc, etc.

Ten minutes later, another doctor. Exact same questions. Exact same answers.

Ten minutes later, I see a gurney in the hallway. Apparently I was scheduled for chest x rays this morning. Odd, given I had chest xrays thursday night and yesterday morning. The nurse checks and some other doctor ordered more xrays. I go. They take the exact same pictures that they took yesterday, even though yesterday's were clear. Now back in my room.

Hence, being in the hospital is a blur. Every day and every doctor starts to meld into one. Boredom, anxiety, and the desire to get the flock out of here grows as that melded blur grows.

hospital blur

It's Saturday..I guess...and I'm still in the hospital. This is what happens. One day becomes two days becomes three days and next thing you know, I've been here too long. It all becomes a blur. I eat, sleep, watch tv, talk to visitors, and wait for lab results.

No fever yesterday, I've gotten two transfusions already, lots of powerful antibiotics, fluids, blah, blah, blah.

My potassium is now fine. Kidneys still aren't good, but they haven't gotten worse.

uh oh, see that, as I am writing this, I got tired and need to take a nap. It's a boredom nap, but a nap nonetheless. It'll be Sunday or Monday or Tuesday soon enough.

Friday, August 12, 2011

Oops

I managed to make it to work 4 days this week. I fought off a fever the other night. But the fever came back yesterday, so now I'm back in the hospital. I didn't necessarily go kicking and screaming, but I wasn't happy about it. Probably the right thing to do, we really do need to avoid infections. I imagine I'll be here through the weekend. My blood count is super low, as low as its been this whole time. So I am getting blood as I write this.

My potassium is down which is a good thing and creatinin is about the same. Mixed bag on the kidneys.

Luckily I have angry birds and preseason football to keep me occupied.

Thursday, August 11, 2011

good patient becomes bad patient

We're in the 4th month of this shit. So far I've been a pretty good patient, doing what the doctor says, following orders and working to get better.  Sure I've had moments of being pissed off or depressed, but generally I think I've kept a fairly positive attitude. Until yesterday that is.  Every morning I take about 11 or 12 pills. Yesterday was no different, except it really pissed me off. 11 fucking pills, every fucking day. It's becoming a real bullshit deal.  I really need to see improvement.  Anyhow, that got my day started off on the wrong foot.  Then last night I had a fever, and Dr Phan has been very clear that if I have a fever I need to go to emergency, because I might have an infection.  Well going against his recommendation and Leslie's recommendation, I opted to not go to the hospital.  (Please note.....not looking for advise or any tsks tsks).  I knew the fever would break. And more importantly for me, I knew if I went to emergency I'd end up spending 4 days in the hospital and by day 2, I'd be thinking about how I can kill myself and if I'd have to gumption to actually do it. (again, no advise please.....just venting and letting the thoughts flow).  When I spent 8 days in the hospital a couple of weeks ago it was horrible and I'm not ready for that again. Foolish? Perhaps. But it was decision I made. Leslie called me out as a bad patient, and I can't disagree.

I've been at work every day this week, but I've also been pretty tired. I think the chemo is starting to wear me down a bit. It's hard waking up in the morning.  Tomorrow we have a kidney doctor appointment and hopefully there is improvment. There sure the fuck better be. And I really want these tubes out of my chest.....they're annoying, there is a risk of infection, I can't shower, and I can't roll over on my side. Please let me get the tubes out next week. That alone will help my mood.

We see Berenson next week and will have a good idea if this new regimen is working or not. Again...it sure the fuck better be working. I've been thinking about a rental house I have in Fallon, Nevada. The mortgage is like $850 a month and it's in the middle of nowhere.  Maybe I'll just move in to that house and live a quiet cancer filled life in the middle of Nevada. Woohoo, exciting!!!

What else? I think that's about it for the update.  I had blood work this week, I did a 24 hour urine test (self dignity is out the window), and I'm taking a laxative to flush potassium from my system and that's playing mad games on my belly...if you know what I mean.  But otherwise it's been quiet.

Saturday, August 6, 2011

Saturday

Kidneys still jacked up, but we're doing a whole lot of flushing. A LOT! Go back to Zoller, kidney doc, next friday. I am predicting kidney turn around. I got a glimpse of a dialysis room. Scary. I have to say the kidney issue makes me more nervous than the cancer.

Saw the new planet of the apes movie today with Matt Arms. A bit disappointing, the movie not Matt. But it was my first movie in a long time, so that was awesome. Had blood taken today. Leslie tweaked her back today.

And that's my report. Signing out.

In Williams' wondrous life, cancer a means to ... another beginning

Pat Williams, owner of the Orlando Magic, and his fight against myeloma.

Thursday, August 4, 2011

2 days in a row in the office

Baby steps.....Made it to work yesterday and today. Loved it.  I'm feeling pretty good. Had blood taken today and we'll see results tomorrow morning at kidney doctor. Think positive thoughts for the kidneys! I'm sending good vibrations to all my organs....that's what she said.

Next week is an off week for chemo, so hopefully I'll put in some more days in the office. I thought I'd forgotten what I was working on, but turns out it all came back to me.

Wednesday, August 3, 2011

Awake

Weird...woke up to the alarm today. Going to work. Yay!

Tuesday, August 2, 2011

Almost back to a routine

Tomorrow I go to the office for the first time in 3 weeks. Who knew I'd be excited about going to work. I've actually been getting a lot done from home and while I spent a week in the place that shall be nameless. But going to the office will feel like I am part of the real world.

Friday we have follow up kidney doctor appointment. I still need lots of kidney improvement, but seems like I have at least stabilized. I hope so, cause for some reason, issues with my kidneys scares me more than the cancer does.  I can eat just about anything now, which is good. No dairy though....so no ice cream.

My red blood cell count is up, which is odd. Seems like good sign to me, but both cancer doctors say it's nothing to get excited about.  My light chains ( a measure of the cancer) are down, also seemingly a good a sign, but Phan wants to see a trend....a consistent downward trend before we consider it significant.

I owe some people some phone calls. Sorry about that, I'll try to catch up with people this weekend.

And that's it. A couple of days coming up with no appointments. Just me and my annoying tubes. I'll take it.