Tuesday, September 27, 2011

Another double entry day


You're looking at a picture of my perm a cath (and my man boob). It's a couple of tubes that are connected straight to a major artery.  I've had it since mid July.  It has to be flushed every week or two, can't get wet and carries a risk of infection. We had it installed when I did plasmapherisis. It stayed in, in case I was to do dialysis. However, I now have my av shunt also known as the fistula....which said repeatedly can lead to a number of double entendre jokes, Double fistula, if you will.   But with the shunt, the perm a cath ought to be removed in a week or two. Yes!

Today it hit me. I'm taking my kidney meds, I'm sticking to a kidney diet, and I'm flushing. But the kidneys are not quite seeing the improvement that the cancer is. So what's the missing ingredient? Exercise, of course. I walk Gracie sure, But that's it. I haven't really worked out since I got the perm a cath. I don't want to sweat on it, I don't want to get an infection and I can't shower....bathes only, which is working. But I did a little research on the internets today and exercise is good for kidney disease. I need to exercise. So once these tubes are out, we'll start slow. Ride a little, lift a little, maybe even swim....which won't put strain on my bones. I need to attack this kidney issue. Fuck you myeloma and the kidney problems you've caused. But I've got it under control.

chemo day and lab results

First, latest labs. The bad protein in the urine is down to 2,700. Good news. It had been 6,500 at one point. 2,700 what, you may ask? Heck if I know, but the number is going down and that's real good. My red blood count went up to 10.6....that's as high as it's been this whole time.. Normal is about 14 and my low was 6, a couple of months ago. Creatinin is still way too high...7.9. so the kidneys aren't following the trend. But I'm not on dialysis and everything still works. Friday we see Zoller the kidney doctor.

When the kidneys do improve, here is what I plan to ingest....mac & cheese, pizza, blizzard from dairy queen, quesadilla, and cold beer.

Chemo was uneventful. No treanda today, so it was a short treatment...just a couple of hours. No drama in the doctor's office, but there was another new person getting chemo. Cancer takes no holiday.

Vikings are 0-3. They blew another halftime lead. What the heck? Give Peterson the ball!

Monday, September 26, 2011

Monday already

Damn, the days sure do blend into one another. It's Monday. And it's almost October. I'm going to work today, although I am tired. Tomorrow is back to chemo, so I'm right in the thick of it.  Stopping at the lab on the way to work and tomorrow I'll have the results. Come on treanda, keep doing your magic.

Later this week, it's the kidney doctor and the av shunt doctor.

Friday, September 23, 2011

steroids

Another component of my infusion chemo is the heavy dose of steroids that I get.  dexamethesone. This equals irritation. Steroids increase my irritation level....plus I imagine I'm no longer qualified for Olympic competition.

Fun stuff. But getting better and that's the key.

Neuropathy

When I first started chemo way back when, I was told that one of the side effects could be neuropathy. Basically, neuropathy is when the nerves in the fingers and toes lose feeling. For some folks it can be real painful. For others it means they can't button their own shirt. I had associated neuropathy with diabetes.  But as I said, it can be a side effect, albeit temporary, from chemo.

I've been lucky that up to now I haven't had it. But since starting treanda I do have it. But I have a minor version. It's not painful and doesn't prevent me from doing anything.  However, everything I touch feels the same. Everything has a rough texture feel.  Very odd sensation...nothing is soft, nothing is smooth. Clothes, paper, Gracie, Leslie, keys on the computer, my own skin...all feel the same......rough.  The feeling went away during my off weeks from treanda, but now that I'm into cycle two, it's back.

I had treanda today. Tired me out, it's doing it trick.

No new lab results. I'll be doing blood and urine tests this weekend, with results on Tuesday. An older man fell in the doctor's office today. He was trying to get up ofter his chemo. Leslie jumped up to help. I was hooked up to the IV and napping. He's Turkish and neither he nor his wife speak English. His sons showed up to translate between he and the doctor & nurses. He was taken to the hospital. I don't think the fall hurt him, but whatever his cancer is and the chemo are taking their toll.   My guess..I'm not a doctor.

Wednesday, September 21, 2011

Double Entry Day

And the response to the subject line would be?

Any how, I don't update my blog as much as I used to. The thrill is kind of gone. And who wants to read about my anger (although anger has subsided quite a bit) and worry and stuff like that?  But I do update it with key information.  So today I thought it worth noting, that I'm at work today and for the first time in months, I am working past noon. I'm taking a lunch break, just like regular people and then I'll continue working after lunch.  We'll see how I do, but so far I feel pretty darn good. It's a beautiful day!

Progress? It would seem so.

Yesterday was chemo day. The start of Cycle Two of my new regimen. The night before chemo I never sleep that good, because I know I am going to get my latest lab results.  Nervous time....always.  Plus yesterday morning I woke up with a headache, and that set off my paranoia that the cancer had migrated to my skull.

But everything is cool. The headache is gone, we can do a brain xray to calm me down, but Phan assured me I'm ok.  Lab Results?  Positive.  My hemoglobin (red blood cells) is up to 10.  Typically through this whole process I've been in 7s and 8s. Once I was down to 6. Normal folks are 13-15. So that's awesome improvement. It means my body is producing blood and the cancer isn't immediately chomping on it.

The bad protein in the urine is down to 3,000. I had been up to 6,400.  Last week it was 3,500. So more progress. Fuck yeah, mother fucker....myeloma Schmyeloma.

My creatinin is 7.5. Not good, my kidneys are still jacked. But I'm holding steady and still not on dialysis. That's good news.  My AV Shunt is healing....so maybe in 3 or 4 weeks I can get the tubes out of my chest. That'll be nice.

When I first started chemo back in May, it was a pretty nerve wracking experince.  I didn't have the port a cath, so drugs were given to me straight through an IV into the arm.  The nurses introduced me to a guy named Steve, who showed me his port a cath and explainned how it works and that it's not a big deal.  The thought of a permanent thing under my skin on the chest was scary.  But now, going to chemo is no biggie and the port a cath is way better than having a needle stuck in my arm every time. And now the tables have turned. There was a woman in chemo, and her husband, yesterday, who was getting her first treatment.  This time the nurses asked me if i could show the port a cath to them. She was going to be getting one, and naturally had a lot of questions.  I think I calmed her down a little bit. Funny, how cancer patients are all part of the same team, a fraternity if you will. And I don't even like fraternities.  Life is funny. But I feel good, it's a beautiful day and we seem to making progress.

Friday is more chemo and more treanda. Bring it on!

Sunday, September 18, 2011

Field Trip

Yesterday I went with Matt to the Reagan Library in Simi Valley.  It's about 60 miles from home. The highlight....the actual Air Force One plane. That alone made it worth it.  But more importantly, it was my first big outing in a long ass time. And I did pretty good. I was definitely tuckered out last night, but not too bad.

Also of note, we had lunch at Chilis...Crunchy honey chipotle chicken. So good!

Another Viking loss today, back to work tomorrow and chemo on Tuesday,

Thursday, September 15, 2011

Treanda says " F u myeloma"

Saw Dr. Berenson today. He's basically my myeloma consultant. He said it looks like we're getting "traction" with the new chemo regimen. We're doing good and next week I start cycle two of this regimen, Good news! We're getting somewhere.  Thank you treanda.

I've felt really good this week. Worked a lot, had energy, etc, etc.  Next week that ends as cycle two starts. But that's ok, its working.

Kidneys still questionable...but lab work I had done today ought to give some answers. My arms is recovering from the AV shunt surgery. It's pretty freaky. You can feel the blood moving in my wrist and if you hold the wrist up to your ear, you can hear the blood pumping away. Really weird.

I've been missing the bike a lot lately. Might try and ride the stationary bike this weekend.

Other news...going to Reagan library on Saturday with Matt.
Sunday, Vikings bounce back and win.

Tuesday, September 13, 2011

Tuesday

It's another off week of chemo. Well, sort of. I do take a chemo drug orally at home during the non-infusion weeks. But that doesn't count. I'm feeling pretty good. Been at work two days in a row, tomorrow ought to be three. Gracie got a morning and afternoon walk today, that's a first in a while.

Thursday is Berenson...hopefully he'll echo Phan's sentiments that we're making progress.  Lab work on Friday and next week it's back to chemo and treanda and feeling like crap.

Saturday, September 10, 2011

Home

Got home last night about 9 pm. aaah.

Now have 3 connection spots on my body...port a cath, perm a cath, and av shunt. Frankenstein's monster.

Friday, September 9, 2011

Rapid Fire Summary and Update

Diagnosed with multiple myeloma May 2.
Started chemo May 3.
Three different chemo mixes didn't work.
Started new drug mix late August. Signs that it is working.
Drop in bad protein in urine.
Kidneys still bad but has been stabilization and a little improvement.

Still not on dialysis, although super duper close. I've opted to put it off for now and let chemo do its trick.
Nonetheless, getting AV shunt (merging of a vein and artery in arm)today. Shunt would be used if dialysis were needed and allows for eventual removal of tubes hanging out of my chest.

Currently in hospital cause of high fever the other day.
Should be going home today after AV procedure.

Other facts:
Still have my hair
Still working part time...in office and from home
Threw up for first time the other day
Also a first, talked to a cancer life coach yesterday....the mental part is as difficult as the physical.

Wednesday, September 7, 2011

Son of a bitch

So I am just cruising along, taking the new chemo regimen, feeling tired, naseous, etc, etc. I was going to go to work yesterday, but just couldn't muster the energy. But that's ok, part of the process. Then late in the day I threw up for the first time. Still part of the process. But soon after I had 103.3 fever pop up out of nowhere. What the fuck? So now I am back in the hospital, fevers that high are treated as if I have an infection. Fever is gone and actually feel prety darn good today. Fingers crossed for getting out by Friday. Football starts this weekend and John & Doreen are coming to town.

Thursday, September 1, 2011

Two in a row.....do we have a trend?

Me says yes. Two labs in a row with positive results. That's a first! Creatinin down to 7.28.  Alright, we are seeing some improvement. Got the results while I was getting a blood transfusion today. So seems like the treanda might be working.  It certainly is kicking my ass.  Fucking tired and often nauseous. But I'll take it.  Tonight I add revlamed to the mix.