Wednesday, November 27, 2013

Latest Labs. High Five!!! (Meant to post this last week)

Alright! Got my lab results yesterday. Got them right before we went to airport. Good results. As opposed to the past few months, I saw a drop in 24 hour protein, a drop in the upep percentage. My blood counts are up. Creatinin still in mid 3s. All good stuff. Happy Thanksgiving! Happy Hanukkah!  

Monday, November 25, 2013

The Wrath of Dex

Update. It's Monday. Dex is kicking my ass. Emotions all over the place. 

Sunday, November 24, 2013

I hate you dexamethasone

I've written before about dex. It's a steroid that most myeloma patients are familiar with. It causes insomnia, anxiety and has an assortment of potential long term side effects. But it is necessary (so they say) to making the treatment of myeloma that much more successful.

I do my maintenance chemo every other Thursday. Some folks take dex in a pill form at home. I get a massive dose during my chemo infusion. I work on Fridays the day after chemo and am highly productive. I'm so used to being low on blood, that I actually welcome the high and the energy I get from dex the day after treatment. I imagine this is how Rob Ford feels when he is high and running the city of Toronto. On top of the world. 

But there is always the dex crash.  And it is never consistent. Sometimes, it is a gentle landing. I'll be a little tired, but that's about it. Occasionally though the crash is big. And that's how it is this weekend. It's a huge crash. I'm emotionally unstable. A little depression, a lot tired and a whole lot of anger. I woke up today, a beautiful Sunday, filled with hate and anger. I walked Gracie and she pulled her usual stubborn shenanigans. Usually her stubbornness on walks is cute and simply adds to her Gracie uniqueness.

Not today. She pissed me off. I wanted a long walk, but no such luck. The neighbor's dog that barks incessantly has me totally on edge. The cars that make a right turn in front of me as I enter the crosswalk really irked me. I flipped a few cars off this morning and I'd say "fucking shit" were the words I've used the most today. And it is only 8:30 in the morning.

Our neighbor runs a carpet cleaning business out of his house. He's got a couple of piece of shit vans that leak tons of oil onto the street. Seeing that this morning was almost the last straw. Pools of oil all over the place. Can't be good having that stuff run into our sewers.

I'm hungry. I want junk food. I want wings. But I'm trying to be healthy, so how the heck do I balance these things?  It's fucking annoying, the crazy balancing act brought on by the myeloma and brought on even more so by the treatment that is supposed to maintain the quality of life.

I've got a good quality of life, but jesus h christ, this emotional roller coaster is kicking my ass. My head feels ready to explode.

I had acupuncture yesterday. Truly a calming and healing process. But a day later, I'd say I've wasted that calmness. Last night I had plans to call people up. Friends who I haven't spoken with in a while. But I had nothing to say. Dex made me nearly mute. Dex left me without a feeling of self worth. How can I talk to people if I have nothing at all to say?  No phone calls were made. Where is my cave to crawl into?

I recently read Slow Getting Up by Nate Jackson. It's a story of one man's NFL experience.  He mentions dex is taken to help recover from injuries.  It reduces inflammation, is my understanding.  I suppose dex for a football player isn't a bad thing. The anger and rage it creates can be good for the aggressive nature of football. Unfortunately dex is not a steroid that helps build muscle.

And this is how I feel today.  I tell myself things are good. I feel good. Living a normal life. We've got a nice Hawaii trip coming up in a couple of days. Minnesota two weeks after that.  All good. But also all so maddening. Today I need to start thinking about all the meds I need to take on my trip. It takes some planning. Footloose and fancy free is generally gone from my vocabulary.

Have I made my point yet? Don't worry folks, I'll get over it, but today is not a good day. Grrrr.

Friday, November 22, 2013

Does Joe Perry of Aerosmith watch the Simpsons?

Today I read a tweet from the actor Hank Azaria.  He's played a whole bunch of characters and is pretty darn funny.  He is also known as the voice of Moe on the Simpsons.  I don't really watch the Simpsons, but I do know that Moe is the bartender at the bar that Homer hangs out at.  Azaria's tweet said that he met Joe Perry of Aerosmith. Joe Perry called him Moe.  It got me wondering if Joe Perry watches the Simpsons. It is possible. Conversely, perhaps Joe Perry has a handler who feeds him facts about whoever he might be meeting.  The show Veep on HBO has Julia Louis Dreyfus playing the vice president. It's hilarious. When she is shaking hands on long greeting lines, she has someone in her ear feeding her little tidbits about each person. She'll then ask each person a question using that tidbit.  It brings a more human element to the handshake.  I wonder if Obama has this sort of person. 

And what an interesting job that would be.  You'd need a good memory. You'd need to be a great researcher. You'd also need to be a fan of the trivia and recognize the uniqueness of each person.  We all have a story. Even seemingly innocuous people have interesting stories.  Horrible people also have humanizing backgrounds.  Sometimes I think that myeloma has turned me into a boring person, with nothing to talk about with other people. I'm not feeling super interesting. But I need to be me. I need to tap into my experiences and my interests and my history to keep things lively.

I'll also say that I love facts. I love researching stuff. I've got a decent memory, although chemo brain sometimes impacts that. But I try to keep the brain active to avoid chemobrain.  In other words, if somebody needs a handler to feed them information about other people, I'm the man.  Call me.

The latest from my friend Brad

Below is a link to Brad's latest post. Worth reading.  His attitude and approach is inspirational. Today he listened to a couple of JFK speeches, and even now, 50 years later plus, he drew inspiration from Kennedy's words. 

http://bradstrong.wordpress.com/2013/11/23/1122-63-jfk/

Collection Day

Monthly 24 hour pee collection day. Brought this to work with me. 

A Description of Myeloma Side Effects

Here is a great post by Stephen Kramer, diagnosed in early 2010. He recently had a short drug vacation and the good/bad effects of myeloma and the drugs he takes, became quite clear.

Thursday, November 21, 2013

Hodge Podge of Nothng

So here's a pet peeve. It happens at work.  It happens a few times a year.  You know how if you're leaving work or on your way to a meeting and you run into a coworker who stops you and says they need to talk to you? And by talk, they mean at that very moment, thereby delaying you   If they need to talk, why didn't they call or email?  Why randomly encounter someone and tell them you need to talk?  If it's a critical issue, this person could have come by my office.

I left work at noon today. It was a chemo day.  I worked half day, went to the gym, and then chemo. It's a tight schedule. I was about to get on the elevator to leave and a woman stops me and says she needs to talk to me. She then went on to over explain an issue. It went on for well over five minutes. What the heck? 

After chemo, we usually go to a nearby deli and get some matzo ball soup and a treat from the bakery. We call in our order just as my treatment ends and by the time we drive over to the deli, the order is ready.  Today was just me at chemo. Leslie was and is out celebrating her birthday. I called Katella Deli as I left Dr Phan's office. By the way, the office administrator told me she is leaving  for another job. That sucks. Good for her, bad for me. She's been there since I started chemo. Super nice, super funny. And she is moving on.  One of the doctor's nurses left about a year ago and I still haven't fully accepted her replacement. I like consistency. I like my team. I understand people need to look out for themselves. But it's a hit to the team. The woman leaving is the friendly voice I hear when I call for my lab results. She is at the front desk when I go to the office. I say "boooooo" to her leaving. But best of luck as well.  Good for her.

 I was on hold with the deli for almost ten minutes. If the Undercover Boss was watching operations, he or she would not be happy with the wait time. Even worse was that it was going to take 30 minutes for my food to be ready. Soup! That is way too long. Normally 10 minutes is the prep time. Cancelled that order. But that also meant I didn't get a treat from the bakery. I'm home now and did find food to eat for dinner.  But we have no cookies. We have no junk food. I'm craving junk.  The dex I get with chemo is kicking in.  It makes me hungry and it makes me crave junk. The anger aspect of steroids also hits quickly. Today it hit as I was driving home, sans soup. Too much traffic. I could feel the anger and ire towards the other drivers building up.  The anger was boiling. But I recognized it for what it was, and was able to make it home without yelling at anyone on the road.

Tonight is insomnia, another effect of dex, a steroid.  Tomorrow I work and I'll be wired all day. Actually I'll be super productive and get a lot done. By Saturday the dex wears off, the chemo drug (velcade) hits and I'll be tuckered out this weekend.

Tomorrow I do my monthly 24 hour urine collection.  Saturday I turn it in and do some blood work.  Remember we're concerned  about the total protein in my urine and the percent of that total that is bad . The last 3 months, the total protein has been edging up. A little worrisome or not worrisome at all. Depends on your attitude. But the percent of the total number that is bad protein has been going down. Thus my numbers are actually a little better now than they were a few months ago.  The current tests have me a little antsy and anxious even though I feel great. We're leaving town on Tuesday, so I'll have to call to get the results. Ah shit, I just remembered that the office is closed Thursday and Friday. My labs results usually come in Wednesday afternoon or Thursday morning. I might have to wait till Dec 2 to get full results.  Damn it, I don't like waiting for results. 

Today I did a Cure Talk conference call.  A myeloma doctor discussed a possible new treatment option. It was pretty damn interesting. Anyhow, I introduced myself and mentioned I am a patient of Dr Berenson. Dr Khan, the speaker, sang the praises of Berenson and said he's on the forefront of myeloma research.  Khan, like Berenson, is not a proponent of stem cell transplants. The treatment option is called monochronal antibodies therapy. I knew little about it. It's been used with success with other cancers and now is going through trials on myeloma. Sounds promising. I plan to talk to Berenson about it when I see him on December 3.

I was going to use this post to delve into questions on the meaning of life and what our purpose is. But I opted not to go in that direction and instead talked about today.

There's the report. I feel great. No complaints.  And that's my story.

Wednesday, November 20, 2013

RIP Hunter, A Real Life Rescue Dog

It's the middle of night. My odd sleeping habits have me awake. I'm on the couch with Gracie next to me. Gracie has been my pup for about 6 years now. I got her from a rescue group, who took her out of a kill shelter on her last day. The shelter found her wandering the streets of a dusty and hot inland Southern California city. During my stays in the hospital she is absolutely what I missed the most. I really don't think of her as a dog. I swear she thinks and processes things as a human would. When I was really sick, I'd try to get short walks in with her. She knew I was struggling. She was always calm, patient and understanding.

While awake tonight I came across this beautiful piece, a eulogy of sorts to the author's rescue dog Hunter. I had to share. It will make you smile and it will make you tear up.

http://gawker.com/the-remarkable-tale-of-hunter-the-real-life-rescue-dog-1467039626

Sunday, November 17, 2013

Piece of Cake

Monday is about here. Work, anxiety, chemo, insomnia, 24 hour collection. That's my week. It's a what? I can't hear you. It's a piece of cake ( while I have created a few cake masterpieces in my day, this is just a photo off the world wide web. Not mine)


Saturday, November 16, 2013

Wow.

Saturday morning. Walking Gracie. Well, she's walking me. Sun is out. Still early so It's quiet. And other than the job anxiety, I feel great. Really super. In your face myeloma. You've been posterized. 

Friday, November 15, 2013

The Week that Was

Friday evening here at the Goldman house. We just ate some dinner and are now watching tv. Gracie is asleep between me and Leslie.  Today I had my interview for the mobility and healthy living program manager job.  It's a job I've been anticipating being available for a year now.  I'm pretty happy with my job, but for me this opportunity is worth making the change.

Anyhow, the interview was great. Very conversational.  I've had some horrible interview in my life, but this was pretty good.  So now I wait to hear the decision. Wait. Ugh. I'm not good with that.  Tonight I've got a fairly decent amount of anxiety.  Hopefully it'll calm down.

Interesting, though, is that I've had to do a lot of waiting over the past two years. Waiting, as in literally waiting in a doctor's office. Waiting, also as in waiting for test results.  I do a lot of blood work. I'm very aware of my numbers, so every couple of weeks I wait for my results. At this point I don't get overly anxious about what my numbers will look like.  Tonight my anxiety about this job is way more than it is when I do lab work.  On one hand it's annoying having this angst. But on the other hand, it's a good thing.  I am anxious about something not myeloma related.  I really didn't think about my myeloma much week. (Other than having to get a procrit shot this morning for my blood count).   

During my interview, myeloma wasn't on my mind.  I discussed the position with every intention of putting all I got into it. I'm more than 30 months into myeloma. But I'm leading a normal life. Just doing my thing.

This week was also the employee of the year lunch at work. I was one of eleven finalists. I thought I had a good chance of winning, but no such luck.  Nonetheless the nomination meant a lot to me, because, as I have mentioned before,  it means I am working and thriving and managing the big C.

And this week, I did get some lab results.. As I mentioned in a recent post, my creatinin is 3.44.. That's the lowest it has been in two and half years. The myeloma is still in check. Bravo.

I made it through the week. I had several big things happening this week. All seemed to go well. But now I have some waiting to do. Yuck.

Wednesday, November 13, 2013

Livestrong and Deadspin

Deadspin is one of my favorite sports blogs.  It's funny, interesting and real topical.  Today they had a post about Livestrong and the great services they provide. Caught me by surprise, but really nicely written.  Give it a look.

http://deadspin.com/the-best-corner-man-for-the-fight-against-cancer-1458195551

Monday, November 11, 2013

3.44

By the slightest of margins, we have a new low for creatinin. 3.44. Kidneys hanging tough. Myeloma at bay. 

Visitor


Took a friend to emergency this morning. Life is a funny thing. Ha. Maybe not so funny. 

Sunday, November 10, 2013

And Football

Done and Done


Stuffing in Progress


The Week Ahead

It's Sunday. The Vikings played on Thursday (winning just their second game of the season), so I've got the NFL red zone channel on. Instead of me flipping channels to find  a decent game to watch, the red zone channel does the work for me. They go to games that have imminent scoring opportunities. It's good stuff. And I'll say this, if there is one thing that makes me want to have a cold beer and betting ticket in hand, it's the red zone channel. I was thinking I'd make a Vegas trip this football season. I'm up for it. But time and funds aren't allowing it.  Well, there is always basketball season. 2014...Vegas here I come.

I'm not complaining though. I've got a Minnesota trip coming up in December with my brother. Vikings game, live and in person.  And in a couple of weeks we're off to Hawaii for Thanksgiving. An old friend lives in Maui and invited us and my uncle Jan to come on out.  Practicality, rationality and guilt had me leaning heavily to not going. We'll hopefully be done with our bathroom construction. Money is tight, but as I said in a recent post, my scare last month has me focused on living life right now. I can't wait around for myeloma to possibly come back.  Always looking over my shoulder is no way to live.  So thanks to my credit card, Maui it is. 

I did blood work yesterday. Just the basics. I should have results tomorrow. Today I am tuckered out. The dex from Thursday's chemo has worn off. The chemo drugs are working. I'm beat, physically and mentally.  I was going to go on a bike ride with Matt Arms today and perhaps even stop at Buffalo Wild Wings (Lemon pepper and Asian zing are my faves).  But I don't have the energy.  And the dex crash and chemo drugs have hit my mood. I've got the blahs today. This past Friday I was on the dex high. Felt great. Productive at work. Truly felt on top of the world. The crash has me feeling a bit overwhelmed and underwhelmed. Overwhelmed by stuff...so much to do and think about. Underwhelmed in that nothing seems that exciting to me. I can be a moody person in general. I've always needed Matt quiet time. This chemo crap simply exacerbates that feeling.  File this under Mental Challenges of Myeloma.

I have a big week ahead of me. Tomorrow is blood work results. Tomorrow is a pot luck at work. I'm bringing stuffing. Usually I like to do a unique stuffing. I love stuffing and it's fun to make different stuff. But just not feeling it, so I'll go the stove top route and simply add a few different ingredients.  Tuesday is my work's employee of the year luncheon. I'm one of 10 finalists. I'm pretty happy with that, but I'd be thrilled to win. For me, it would reflect another blow to myeloma, in that I've overcome it and have kicked some ass. I'm pretty darn happy at my job right about now. But Friday is my interview for the city's bike and healthy living coordinator. It's probably the only job I'd realistically leave my job for. I think in that position I can do some real interesting and beneficial projects, and again, I feel like I'd b sending yet another message to myeloma that I'm still alive and kicking. And that's a big part of the myeloma battle. we need to do stuff that reminds us we're alive. We need things to motivate us. I know that a lot of fellow patients have kids and seeing their kids make their way into adulthood is what motivates folks. I'm actually a bit envious of that.We don't have kids. I don't have that sort of legacy to focus on. I've got Leslie and Gracie, my family, my friends. I've got fellow cancer patients. But I imagine having that blood connection to kids is uniquely special.

The point is, it's a big week ahead of me. It's a big two months ahead of me.  Then it's 2014. Then I re-evaluate again.  I'm feeling like I want to learn something new. Can I turn myself into a top notch sports photographer? Can I become an advertising and branding genius? Can I create a fund raising event to raise funds for myeloma research and support?  Yes to the last question.

Having said all the above, I'm good. Been feeling good. Back to working out after my flu. Good good good. 

Thursday, November 7, 2013

Well?

Today was day 1 of cycle 18 of maintenance. Each cycle is 4 weeks long. 4 times 18 is 72 weeks. 72 weeks of maintenance chemo. Whew wee. Ain't that something?  At the start of every cycle, I have a little sit down with Dr Phan. We discuss my latest lab results and how I'm feeling.  Some of my numbers have been inching up, others have gone down. Put it together and I'm on an even keel from last month.  But even more important is that I feel good. Energy is up. I'm working out. Great, great, great. 

As we know, last month we had a little hiccup, where I was pretty sure the myeloma was picking up steam.  That thought got me thinking about my mortality and if I'm truly living my life. These were thoughts that hit me like a ton of bricks for the first several month after my diagnosis.  But I as I've gotten better, I've fallen back into a normal routine. Routine is good in terms of my treatment. But I'm not sure routine is good in terms of ensuring I live my life.

With last month's scare, I'm back in that overly pensive and overly self-analytical phase about what I'm doing. I'm also in a "Well?" stage. As in well, now what? What am I doing? Or well, what the hell are you going to make of your life. Well, what's my purpose? Well, I've had a good run.

I've said it before and I'll say it again: I need to kick things up a notch and throw caution to the wind.   

The Myeloma Beacon

The Myeloma Beacon is a great source of information on myeloma. It also always provides posts from myeloma patients.  A recent post was an open letter to myeloma from Sean Murray who was diagnosed in 2008. It's good reading.

http://www.myelomabeacon.com/headline/2013/11/05/seans-burgundy-thread-dear-multiple-myeloma/

Sunday, November 3, 2013

Some thoughts from Ava

Ava is the daughter of my buddy Brad, who is coming up on his 1 year cancerversary since his myeloma diagnosis.  Over the past several months, I've shared a couple of posts from Brad, who's got an awesome attitude. The below post was from Ava. It's heartfelt and touching.

http://bradstrong.wordpress.com/some-flava-from-ava/

30

Yesterday was 30 months since my diagnosis. 2.5 years. 4.8% of my life. The day passed without me even thinking about it.  That's a good thing.

Friday, November 1, 2013

Mixed Nuts


Today was my monthly Berenson visit. The first since my recent scare. My monthly lab results were good. We track a bunch of stuff, but the key monthly numbers are total protein in 24 hour urine and the  % of protein that is bad..  My total protein went up. It could mean something. It could mean nothing. But the percent of protein that is bad went down from 56% last month to 42% this month.  Doing the math, the amount of total bad protein that the myeloma is producing is down. That is good. My creatinin is 3.65. A good number for me. Remember that it's the bad protein that beats up and damages my kidneys. My creatinin staying at a good number is a reflection of the myeloma being under control.

Tomorrow we fight another day. And tomorrow is 30 months since my diagnosis. 2.5 years.

Berenson


It's monthly visit time. I'll discuss later. All good.