Saturday, July 30, 2011

Errands never felt so good

Store, gas station, cleaners, roasted chicken, windows down in car on a saturday. So nice being out and about, a little slice of normalcy.

Spent the day yesterday getting pheresis and chemo....long ass day. But we're done with pheresis...now the new chemo regimen has to do its job. We see Dr B on Monday and continue chemo on tuesday, plus I have thalidomide that I take at home at night. That shit knocks me out....in a mellow sort of way, so it's alright.

Tuesday, July 26, 2011

Home.....Oops not home

Craziness. We thought I was going home today. And we thought I'd do more plasmapheresis (pp for now on; too long to type) as out patient. BUT, the hospital doesn't do pp as an outpatient thing. Instead I'd have to be readmitted into the hospital for a day. Stupid, right?  SO since tomorrow is my next pp, it didn't make sense to leave today and then come back tomorrow. SO, I can go home tomorrow. BUT, my next pp is scheduled for Friday. SO, do I check out tomorrow or stay till Friday to make things easier? That is the question. If I can find somewhere that does do it as out patient, then I can be out of here tomorrow. Otherwise I feel pretty good, I've been up walking around and actually doing a fair amount of work.

The kidneys improved initially and now they have stabilized. Still not good though. The goal though was to stabilize them until I started the new chemo regimen. I've started the new regimen, so let's see improvement.

Here's the chemo drugs I now take: velcade, thalidomide and cytoxan. Plus, there are a whole bunch of other meds. Thalidomide is some powerful stuff. It knocks me out. Too bad they wake me up 4 or 5 times a night. Annoying, which is why I want out. It's anything but relaxing here. Motel 6 is more comfortable than a hospital. At least I have my own room.

My diet has changed again, my kidney doctor wants me to eat everything, except dairy products. And she wants me to eat lots of salty food and protein. This is totally opposite of the kidney diet that Leslie has been working on for 3 months (3 months? holy shit, this has been going on a while). WTF? I don't understand the change, but I'll take it. I had salt and pepper chips today. So good!  My appetite is pretty darn good, I'm hungry most of the time. Now that I can eat just about whatever I want, I should be putting on some pounds. I might be one of the few chemo patients to get fat during treatment. Between my appetitee and steroids, don't be surprised if I become big, puffy, fat blob.

Got a plant and card from work folks today. That was awesome, really helped my mood. I've had a pretty bad attitude (baditude) for the past few days The hospital sucks, but having the crap attitude doesn't do anyone any good. So that card helped me turn it around. Thanks everyone.

And here's a little tip.....when I have a bad attitude or am seriously not happy, its unlikely that I'll update the blog. So if I go a few days without blogging, you can assume I am down. If I'm updating, then my attitude is good. So I'm good right now.

Another tip..... if I write about my anger or irritation, I'm actually doing ok. I use the ire as motivation.

And my final thought for today: I really need a passion or hobby. Something that I talk about and think about all the time. It needs to be one step away from an obsession. And it needs to be something that I talk about so much, that people walk away from me after a while cause they're sick of hearing about it. The question is: What is my passion? That's a tough one.

And my final final thought for today: I'm real excited for the new planet of the apes movie. I'd kind of like to do a planet of the apes marathon and then see the newest one. Might be a tough one to pull off (that's what she said). But when the new one is on dvd and I have fewer doctor appointments, I think I can do it.

Monday, July 25, 2011

I do know it's Monday

Well, still in the hospital. Boring and not at all relaxing. I had the last of the plsamapheresis today. I still have tubes sticking out of my chest. Assuming my blood work is ok in the morning, I should get out of here tomorrow.  So tonight I am lying in my hospital bed, trying to think positive thoughts about positive blood results. I'm also worried about leaving here with tubes sticking out of my chest. How do I clean them, avoid infection, and prevent Gracie from jumping on my chest in the middle of the night?  Scary!!

What else? I could go through a laundry list of little things that are bugging me physically, but I won't. I actually feel ok, not much different than I've felt for a while.

Saturday, July 23, 2011

Is it really Saturday?

Well, we saw Dr Berenson on Monday and felt encouraged by what he had to say. That encouraged feeling disappeared quickly Tuesday when Dr Phan told us that I needed to get in to a kidney doctor right away, that I was on the edge of kidney failure. We'd been trying to schedule an appointment with a new kidney doctor, given the first one has been totally disengaged.  I got a Tuesday appointment and was told to check in to the hospital, that I needed to get a process called plasmapheresis....which is being done to prevent permanent damage and help me avoid dialysis.

So now it's Saturday, I'm still in the hospital, I have new tubes sticking out of my chest and I've been hooked up to a machine 3 days in a row, with 2 more to go. The good news.....my kidneys are showing improvement and I'm feeling better. But Weds was bad, I felt bad, the doctors were scaring me and it didn't sound good. I'm feeling better about things again. I've also already started my new drug regimen. And the doctors seem calmer.

I'm here until at least Monday and then I really hope to get out.

Tuesday night (I think) I was wheeled downstairs in the middle of the night for an ultrasound. When it was over, the tech said someone would get me back to my room. I closed my eyes and actually fell asleep. I woke up 30 minutes later, still in this dark room in the basement. I'd say they forgot about me. I got of the gurney and walked in to the hall and found a cleaning woman who flagged down a nurse who flagged down my transport. They definitely forgot about me.

Tuesday, July 19, 2011

Dr B and the new approach

Well, we saw Berenson yesterday. And it definitely gave me some hope. He talked about getting me to the point where I live a complete life....not quality of life. He was surprised we waited this long to change things up, given it was clear that doxil/velcade isn't doing anything. So he's got me on a whole different regime....starting today basically. He says we ought to see some quick results.

My kidneys worried him....more on that in a second. He couldn't believe that fuckhead Warner went on vacation, without following up with us. We need to be seeing a kidney doc once or twice a week.  But, other than my anemia and bad kidneys, he said you couldn't guess that I have myeloma. However lab work shows it progressing.

He sees no need to do a kidney or bone marrow biopsy. We have enough information already and need to go after the myeloma. He doesn't see the benefit of the stem cell transplant....that all you are doing is treating a symptom and not really killing the myeloma. His goal is to kill the myeloma. Leslie and I left Dr B's office feeling pretty good about things.

Then last night Phan called, we got the results from the morning blood work. Fucking kidneys....even more jacked up. We need to act quick and need to avoid dialysis. That was kind of a bummer. I was going to go to work today, but the plan instead is to see a kidney doctor this morning. Warner is absolutely out of the picture, so it'll be a new doctor who hopefully actually cares about their patients. Warner had me do the 4 day in a row saline drip and ran some tests. And then he never he followed up with us.

And I think that is the gist of yesterday. There's hope and hopefully I'll see progress in the next week or two. I need some positive results.

Monday, July 18, 2011

24/7

It's Monday and we're seeing Berenson, the myeloma specialist, today.  I imagine we'll be changing up the chemo drug mix and discussing next steps.  I am going to push for lots of stuff and lots of stuff soon. Bone marrow biopsy, kidney biopsy, start the stem cell harvesting process. I'm 3 months into this shit hole and it feels like zero progress has been made. In fact, it feels like the opposite of progress has been made. What's the opposite of progress? Crap, that's what. I think about this thing 24/7 now. The mental exhaustion is almost worse than the physical fatigue.

I'm not writing this post because I want some words of wisdom from anyone or any positive "atta boys". I am writing this, because I'm tired of it already.  I have this October date in mind for going back to leading a somewhat normal life. I've always been active, healthy and independent. My life now is anything but those 3 things. When everyone talks about "quality of life", are we talking about how I am living right now? Cause this sucks.  If it's October and I'm not improving, it might be time for me to emulate Marley in Marley & Me and find a tree to sleep under for my final days. I thought that was going to be a happy dog movie, but it sure wasn't.

Last night in doing some research on Berenson, I read a linked story from 2 years ago about a local, young police office and his brave fight against myeloma and how great he was doing. Curiosity got me searching how he is doing now....two years later. Two months ago...his memorial service. Awesome.

If my treatment changes and I start feeling worse, I'd imagine there will be a point where I can't work any more. Sure maybe I can collect disability, but how's that compare to working? It doesn't .  And cause of my medicines and treatment, I won't be able to waste my monthly disability check on booze and junk food. What fun is that?

I want Leslie to lead a normal life. She's living this 24/7 and is amazing. But how fair is that...she needs to do other stuff once a while.  I'm feeling like a burden and pity case to everyone.  I don't like being a burden.

Jan and Michelle had a bbq at their house the other day. It was very nice of them. I got a lot of hugs and "how're you doing?", all with that pity look in their eyes.  When leaving, one person said to me "don't be a stranger."  Ummm...ok. I don't see you often even when healthy. Weird. Awkward.  And the awkwardness likely comes from me. One of my best friends, Matt Arms, has been absolutely awesome during this whole time. But I worry that at some point he and friends will fade away.....24/7 myeloma conversation and new medicine talk will only take a friendship so far.  Family.....family is tricky even in the best of times. We're all trying to figure out how to balance the family concern/worry with what my needs are.  And like I've said before I need to get better at communicating and putting my foot down. 

So you see, October is huge. I turn 50 and that's my target for leading a somewhat normal life. And that's why today and this week are huge in my mind and I am a nervous wreck.

Saturday, July 16, 2011

Anxiety and Impatience on the Upswing

Thursday I had a transfusion, my 5th one since early May. I didn't get the immediate energy boost that I usually do. Although my labs showed my blood count went up.

The lab work also shows my kidneys worsening. What the fuck? Dr Phan has some ideas what to do, with the goal being to avoid dialysis. Amen to that goal. But Phan isn't a kidney doctor. My kidney doctor never called us this whole week and it turns out he is on vacation. Fuck you. Leslie made some calls and hopefully by Monday, we'll have an appointment with a new kidney doc.

Monday also is a consultation with a myeloma specialist, James Berenson.  He has already consulted with Phan and has some ideas about super sizing my chemo mix. Let's do it. I'm still tired all the time, but otherwise feel the same. Well, physically I feel the same. Mentally I am more paranoid, more worried, and more impatient. I'm real fun to be around.

Thursday, July 14, 2011

Transfusion # 5

Yesterday was my 5th transfusion since this whole myeloma crap started. Damn, that's a lot of blood. But it was my first one in almost a month, so my body is hanging on to blood longer. That's got to be a good sign, right?

Today I am in the office for the first time in a week. A little weird being here. After work, I go get blood work done, and then it's home for a nap and hang out with Dillon and Jacquie.

Tomorrow is chemo, the end of cycle 4. I was supposed to do about 8 cycles, so in theory I'm half way done. But given we're changing things up, I don't know how many more cycles I have.  Plus I am waiting for consultation appointments with a couple of local myeloma experts. Hopefully, that'll happen next week. Times a wasting!

Wednesday, July 13, 2011

Reason # 38 for the downfall of the traditional daily newspaper

# 38 The local delivery lady

Up until about 3 years ago, I was a lifetime subscriber to the LA Times.  Just like with books or magazines, it's nice to have that tangible paper in your hand. Eventually though the paper became an outdated way to get the news and the writing just isn't what it used to be.

But the biggest problem is my local delivery lady. Every damn morning, while walking Gracie, I see her hauling ass through the neighborhood. She doesn't stop at stop signs, goes about 45 on residential streets and totally ignores the fact that there other cars on the road. More than a couple of times, Gracie and I had to stop ourselves from crossing the street to avoid getting mowed down by her. She has also grazed our feet a couple of times with her paper toss. She refuses to look at me...which makes no sense, given I've taken to flipping her off and yelling at her. I've become that neighborhood grouch who yells at people that aren't obeying the rules.  But I don't care, she really is a hazard. And she's not a good representative for whatever paper she is delivering. Argh...maddening.

Otherwise, I feel pretty good today. I slept good, again no night sweats following chemo. So seems like something is happening. I just need that lab work to reflect how I feel. Transfusion today. Energy!

Tuesday, July 12, 2011

Progress? No, maybe, yes, a mixed bag

Kidneys stayed about exactly the same. Not bad, but not good. But Dr Phan said we might not see immediate improvement from the 4 days of saline drip and 2nd dose of doxil. So we'll do more lab work later this week and see if there are any changes.  We didn't have the results of the "light chains" which is a real marker for the cancer. This is where we really want to see improvement, given the cancer is impacting the kidneys.

I haven't had night sweats in a few days, even after chemo and steroids. This is a real change and possibly a good sign, given they've been a symptom I have had since the get go.  Sooner rather than later, we'll do a bone marrow biopsy and this will give a real clear picture of what is going on.  My bones and calcium count are still ok.

I'm low on blood, so tomorrow is a surprise transfusion day.  It's been a while since I've had one, so I am about due. We'll do it as out patient.  I had planned to go to work tomorrow, but blood trumps work. I am still trying to keep up with work, but it's tough to do with the ever changing medical program.  This sucks, I really just want to go to work and be a normal working stiff.

Dr Phan is referring me to 2 different local myeloma experts.  At this point, he said we need to get creative, aggressive and talk to some other myeloma specialists. It doesn't necessarily mean I have to travel to Arkansas just yet.  It's more the doctor than the location. So he is sending me to two of who he thinks are the best....James Berinson, who is somewhere in LA and Dr Durie, who is at Cedars. 

Friday we finish cycle 4, and then in all likelihood we'll switch to revlimid.  For revlimid, I had to sign some forms that I didn't have to do with the other drugs. The forms had to do with me acknowledging that revlimid can cause birth defects in babies. So I had to sign, agreeing that Leslie and I won't be having any babies while I am on this drug.  Not a problem, but kind of a trippy thing to have to sign.

Leslie is still kicking ass and really doing more than I ever could of asked anyone to do. My mom was here, as was my brother and his youngest. It's really tough for me to simply say I'm tired, go away and conversely really tough for me to ask for help on simple things.  Either way I feel guilty and like I am a burden to everyone. And then you throw in the damn Jewish guilt......like me thinking "damn I should be have been nicer to my visitor" or "damn, I'm a horrible communicator". Communication takes energy, I really should have worked on this when I was younger and healthier. It would make things easier now.  Got a real nice card from my sister and her family.  As always, I really appreciate every one's concerns, thoughts and prayers. That is also real important.

And I think that's about it for the update. It's all overwhelming, but we all agree that we need to get more aggressive. Generally I feel the same as I have felt for months. Fatigued a lot. But otherwise I'm strong and now is a good time to fight.

Monday, July 11, 2011

Monday, Another Week....Time to dig in

Today we have a dietitian appointment in the morning. We need to figure out this kidney diet. Leslie read me some stuff over the weekend, and it's just ridicules. We need to feed the body with good stuff to help fight the cancer. But then I have to watch what I eat because of the kidneys. But then the kidneys are jacked up primarily because of the cancer. It's a vicious, annoying circle.

And I am starting to think that we need to go all in with regard to fighting the cancer. Not sure I can wait for the kidneys to be ok for the City of Hope to do the stem cell process. We're getting lab work today and will have results tomorrow. Based on those results, I want to have a conversation with Dr Phan about looking at Cedars, UCLA, USC or even University of Arkansas, which has a leading myeloma research & treatment facility.  What's interesting, is that most folks talk about myeloma in terms of managing it, extending life and maintaining quality of life.  Arkansas talks about an actual cure and how that might be achievable. It's a slight difference in wording.....manageable vs cure.  But it's a huge difference. I want a cure. I want to bike to work, I want to climb mountains, I want to lead an active life. Sure maintaining quality of life sounds pretty good right about now. But it doesn't sound like it means leading life as I used to.  Perhaps I am reading between the lines or am getting into semantics.

Either way, I need this week to make some decisions and map out a path to normalcy. Fuck myeloma and fuck waiting.

Sunday, July 10, 2011

Relaxation

Nap time for me and Gracie after calming aromatherapy from Leslie.

Day 4 of saline drip

Getting ready to go get saline drip. It takes about 2 hours. This is the 4th day in a row. Tomorrow, I do lab work and we'll see if it helped with the kidneys. I've handled the latest doxil treatment ok. So Tuesday, based on my lab work and kidney status, we may or may not change my chemo drugs.  If we change, we'll go to revlimid, I think in combination with dexamethasone. But we'll see. To say I am anxious, would be an understatement.

Friday, July 8, 2011

This shit is getting old.....real fast

Saw the kidney doctor yesterday. He and my oncologist had talked and they agree that my kidneys are worsening because of the cancer..and not necessarily because of my diet. I still need to watch my diet and I still need to keep to protein intake low.  But the real key is to get the cancer under control. Today is doxil and hopefully that will help.

But we also need to get the kidneys better asap, while we are treating the cancer. In the past couple of weeks, they've moved close to the critical stage. And what we want avoid is dialysis. So yesterday, today, and over the weekend, I'm going to be getting a saline infusion that should help flush and clean the kidneys. I just sit there for an hour and get a bag of the saline solution, I suppose I can handle that. And I need to drink even more water.

But overall, I gotta say I am getting real sick of this shit. Poked, prodded, tired, stressed...every darn day.  I know this is going to be a long process, but wow, it just really takes over your life.  I'll do what I need to do, but that doesn't mean I am going to like it.

Thursday, July 7, 2011

Bye Bye Protein...See You in a Couple of Months

When we first started treatment and first started dealing with my kidneys, I was on a super low protein diet. And I had kidney improvement. Over the past couple of months, my kidneys have gotten worse and I've eaten more protein...too much protein. This past weekend, I had steak, a hamburger, chicken, fish, a couple of turkey sandwiches and maybe something else. Between last Friday and this most recent Tuesday, my kidneys have had a further decline. I'm no doctor, but I'm placing some of the blame on my protein intake. I got lazy with my eating. Can't do that anymore. I gotta stay focused on doing everything right.

Today we have an appointment with kidney doctor. Dr Phan talked to the kidney doc and he knows what is going on. The cancer also produces a bad protein that is impacting my kidneys and my meds have some impact as well. So hopefully the kidney doctor will have some recommendations for getting the damn things under control. I'll probably see another kidney doctor next week to get a second opinion. Also have an appointment with a dietitian next week. The kidney diet and a cancer diet are unfortunately two different things, so finding a balance is key.

Tuesday, July 5, 2011

Back to Reality, and Then Some

Lab work not so great today. Kidneys are worse. WTF?  So now we need to go see kidney doctor this week to get those damn things under control. We're not totally thrilled with the current kidney doctor, so we'll see our doctor this week, but then perhaps make a switch.  My blood count is hanging in there, maybe I'll need another transfusion in a week or so.

Chemo was fine, but if the kidneys don't improve, we might try a different mix of chemo drugs. Got more lab work today, doxil Friday. Argh, so frustrating.

I did talk to an old friend of me and Uncle Jan today.  She was diagnosed with multiple myeloma about 4 years ago.  She was breaking bones at the time, which is how they diagnosed MM. She's doing well now, still has a home chemo routine, but is nearly in remission. She described myeloma is being a diseases that isn't curable, but is certainly manageable over time.  Her message was positive and encouraging. Certainly there is the potential for lots of other side effects.

Back to Reality

Had a good weekend. Hung out. Saw friends, saw family, ate some bbq, relaxed. I got addicted to the Ken Burns documentary on the Civil War, so I watched several episodes. I wish the doctor had wifi so I could watch during treatment today.

Most importantly, I kind of shut everything off this weekend. Physically, I felt fine...hadn't had chemo in several days, so I wasn't bothered by that. I got tired here and there, but it was nice to have a mental break over the past 3 days.

But today it's back to reality.  Chemo today...just velcade. Chemo Friday....includes the elusive doxil. Doctor was able to track some down. Most recent lab results today. And back to work. Well, I'm not going to the office today, but I do have work to do.

My mom gets here today and is signing a lease on her apartment. My brother and niece arrive tomorrow. It's July.

Sunday, July 3, 2011

Electric Planking

Planking

Amber came over yesterday and helped us with a bunch of yard work. Very cool of her.  And she taught us about the growing trend of planking. Leslie had mentioned it to me a couple of weeks ago, but we had kind of forget about it.  It's so random and so funny.



Friday, July 1, 2011

4th of July Weekend/Update

Also: Happy Birthday John, Happy Birthday Uncle Jan and Happy Anniversary Jan and Michelle. 4th of July is one of the better holidays.  I recently watched the documentary Beer Wars, and because of it I should hate the big brewers...trying to crush the little guy. But then I watch the Budweiser commercials with the special edition 4th of July cans and I get fired up. Hell yes Bud!  But no beer for me this holiday weekend.

In terms of my myeloma fight.  I took this week off from updating the blog and from talking about it.  Not much has changed this week. I had chemo on Monday and had the rest of the week off. I start cycle 4 on July 5.  Dr Phan finally found Doxil, there really is a national shortage.  One pharmaceutical company could have rush delivered it, but insurance wouldn't have covered that and it would have been $1,000 out of my pocket.  Instead, for the Doxil treatment on July 8, I'll go to a different location for chemo. Still close to home though.

Put in a fair amount of work hours this week.  But I've been particularly tired all week as well. Lots of naps after work.  Yesterday morning getting ready for work, it took me so damn long to find socks that matched, I got all pissed off. I seem to be moving in slow motion and can't do things very quickly, like find socks.  If I had to guess, I might need another transfusion soon.  But I am getting my normal Friday blood work today and that'll answer the question about my blood count.

This whole time, I've had a great appetite, which is good.  But my appetite is starting to go away, and things that sounded good a couple of weeks ago, now don't sound good at all. Haven't gotten sick yet though and still have my hair. I've lost about 10 or 15 pounds since early May.

What else? I think that is it. Giving Gracie a bath this weekend cause she stinks.