Friday, May 29, 2015

An Update without an Update

I haven't posted in a while. Don't worry...everything is good.  I'll post a longer update in a few days.  For now I leave you with this picture...


Tuesday, May 19, 2015

A short myeloma update

I had my monthly Berenson visit yesterday. I usually go on Fridays, but because of schedules, I went on a Monday. Wow....Monday's are super crowded at Dr B's.  I'm  good. Numbers are stable, My myeloma and kidney labs look good. So we continue with maintenance. The latest cycle of maintenance begins today. Work, gym, chemo today. WGC.  Talked briefly to Dr B about skin cancer. He said that yes it can happen...thanks to velcade and a lowered immune system. But he said not to worry, it's no big deal.  Ummm.....ok. I guess every once in a while we'll remove something from my skin. He also mentioned that medical schools aren't getting the best and brightest. Apparently it's difficult to get youngsters to pursue medicine. The reason? Being a doctor is not a money making profession. And that's it. Short visit. Always a good thing.

Thursday, May 14, 2015

Arghhh. How do we describe our disease.

I've put a lot of thought into the meaning and impact of Tom Brokaw making the talk show circuit to discuss his battle with multiple myeloma and to promote his book. Maybe I've put too much thought into it.  He says he wrote the book to help other families who are faced with the harrowing diagnosis of cancer.  I have not read his book, so I can't really speak to it.  I did watch his hour long show on Dateline and now have watched him on the Daily Show and Jimmy Fallon.

Before I write anything else, let me say that this is a total brain dump.  I'm torn. It's awesome that he is raising awareness for MM and bringing attention to the disease and its impacts. That's all great.  But for crying out loud, please Mr Brokaw describe the disease and your challenges accurately.

You know when you are thinking about something and you're not necessarily bothered by it, but as you think about it, you convince yourself that you are pissed.  I'm debating in my own head if I'm really bothered by his inaccurate description of the disease or if I've bothered because it's part of my shtick.  Maybe my feelings are hovering somewhere between ambivalence, righteous indignity, inspiration and envy.

On the Daily Show, Jon Stewart called MM a back cancer. Brokaw agreed. On both Fallon and the Daily Show, Brokaw says he is in remission and leaves it at that. On one show he quickly mentioned maintenance chemo.  But come on!!  We all know that myeloma is a cancer that keeps on giving. It's not curable. Maintenance chemo, while easy in the scheme of things, is still chemo. Our immune systems are crap and getting an infection is something that a MM patient really needs to avoid.  He never mentions the struggles of fellow patients. He never indicates (again I haven't read his book) that the inspiration and motivation and support from fellow patients is absolutely the most amazing gift from this disease. I've gotten to know some fantastic people.  But thousands and thousands of people die every year from the disease. Remission, partial remission, complete response, partial response.... all something we desire.  But achieving these goals by no means is a green light to kick back and not worry that any day or any month could be when the myeloma kicks back in with a vengeance. 

To me, if Mr Brokaw were to talk about all the challenges he still faces, while he still is living life, raising awareness and doing what he does...this would be a much more powerful and inspirational message.

I'm fortunate.  But I know others who are really facing challenging circumstances right about now.  A mention of the thousands who are struggling would be helpful.  I think what makes myeloma challenging (just speaking about the cancer I know) is that years go by and we are always dealing with it.  People around me forget.  I look fine, I act fine, blah, blah, blah.  I get a week break between my chemo dates. Those weeks are heaven. I work out, I stay up late(r), and there are times during that week off that myeloma doesn't really come to mind.  But I can honestly say, there is probably a moment every single day when I lean back in my chair and have this overwhelming tiredness that feels quite different than tiredness I felt before catching cancer.  It's a tired that comes from deep inside my temples, like they want to squeeze my eyes shut.  Hard to describe. But it passes and I move on.

So, back to the topic at hand....I know during a several minute interview that Tom Brokaw can't say all this. But please, I wish he would at least say what the cancer is more accurately and what his challenges are now.  Put me on Jimmy Fallon and I'll talk about the disease and play beer pong with Jimmy.  Oooh..am I jealous or envious that I'm not getting attention for meeting my challenge? Maybe that's it.  Who knows.

One last thing,  I don't go around telling people about my cancer and what I'm dealing with. As I was writing this, a friend sent me a text saying that perhaps Brokaw doesn't want pity. He wants to portray strength and that's what he is showing people.  The myeloma won't get him down.  That alone is a great message and inspiring.  I get that. Maybe I'm totally off base with my complaints. I better rethink my message.

Anyways, that is all I have.  Please feel free to respond.

Tuesday, May 12, 2015

Face on Fire

One of the pleasantries of myeloma are the side effects and other things that pop up due to a lowered immune system.  Last year I had a minor procedure. A few months ago, I had a skin cancer removed from my arm.  Now, I'm being proactive with stamping out pre cancer on my forehead. For 3 nights I'm using a gel called Picato. Last night was day 2.  One more night. Today my face is on fire.  

Sunday, May 10, 2015

Wednesday, May 6, 2015

Tom Brokaw on Dateline Thursday May 7 NBC 10 PM

Recall, a couple of years ago, I almost had my moment of fame. The show Inside Edition contacted me to see if I could come in and do an interview to discuss my experience with myeloma and what Tom Brokaw might be facing. He had just been diagnosed. Leslie and I went to their office/studio and I was filmed and interviewed. We let everyone we know that I was going to be on tv. And? They cut me out. Those Inside Edition bastards.  They had a 10 second clip of a phone interview with Berenson. I guess that is too be expected.  Last year when I was fund raising for Berenson's research institute, I did try to guilt the folks into donating, but they didn't fall for it.

Anyhow, Tom Brokaw has a new book out discussing his myeloma experience.  The way it's being portrayed by the press is that he's cured and that's why his book is out.  Tomorrow night, he'll do an interview on the news program Dateline on NBC. I'm a little torn. I don't really want to watch it, cause I'm concerned they will sugar coat what myeloma is really about. Hopefully Mr Brokaw will discuss the fact that myeloma is incurable. It's likely he'll relapse at some point. And that even being in remission doesn't mean you're not still taking meds and doing lab work and all that. If I can be blunt....it's not fun. It sucks. It's a constant challenge. BUT it's manageable and treatment options have come a long way in recent years.

I'll watch the interview and I suppose I recommend we all watch.  But I'm watching with low expectations. We'll see.

Tuesday, May 5, 2015

4 Years Plus 3 Days

With the glow of my 4 year celebration fading, it was time to get back to business. Today I wrapped up the latest cycle of maintenance chemo.  The nurses at Dr Phan's office got me a carrot cupcake. Loved it. I'm a big carrot cake fan. I've said it before and I'll say it again, one of the unexpected benefits of the cancer journey is growing close with my nurses and other medical folks. Without them, not sure the journey would be doable....both mentally and physically.

Anyhow, Friday is my monthly labs, followed by a May 18 Berenson visit, then followed by the start of another cycle on May 19.  Routine.



Sunday, May 3, 2015

The Latest from Pat Killingsworth

If you have a couple of minutes, take a look at the latest post from Pat Killingsworth. It speaks to what goes through many a myeloma patient's mind.
http://multiplemyelomablog.com/2015/05/to-imply-multiple-myeloma-is-manageable-indefinitely-disingenuous.html

4 year cancerversary breakfast


Tuesday it's back to chemo.  Wrapping up another maintenance cycle. 





Saturday, May 2, 2015

4!!!!!

Four years since the myeloma diagnosis. Feeling good, feeling strong.