Friday, February 28, 2014

What do I call this?

I never had a complete response. Only partial. So my maintenace was to myeloma on check, we always knew it was there. Now that I'm back to my previous regimen, does this mean I have relapsed?  Hmm, good question. I'm not sure what we call this.

Day 4

Back in the office for infusion where it all started nearly 34 months ago. 

Thursday, February 27, 2014

when the going gets tough....

I'm back on my treanda treatment.  There's going to be some adjustments.  Take a look....

Wednesday, February 26, 2014

Day 1 Done

Ok, I've had Day 1 of Cycle 1a of the new old regimin.  It's basically what I've been doing for maintenance; dex, velcade, revlimid; except different days and different volumes. And with Treanda (bendustamine), an aklylating agent, added in.  Good luck finding this under the list of typical treatment.  But it's worked before and is going to work again.


Tuesday, February 25, 2014

And we're off...

Treanda, baked cheetos, House of Cards 

A New Season Starts Today

I made a video last night, but I really didn't like it. I didn't want to edit myself, but in this case I am.  Anyhow, today a new season starts.  Back to treanda, back to heavy duty chemo.

I've had it pretty easy for the past year and a half.  Basically it's been my off season.  I've felt great, my body wasn't getting beat up.

My numbers have been inching up. Nothing critical. In fact, some numbers, like creatinin, are still looking good.  We met with Phan yesterday and he would have been perfectly ok with me continuing on maintenance.  He's also perfectly ok with me switching back to my old chemo.  There's no right or wrong here.  We do it, we test, we see if it works. Well, it'll work. 

But I want to stay ahead of the game.  I don't want to see my kidneys getting worse and then we make a decision. I don't want to become symptomatic and then we do something.  I want to be aggressive.  That's going to be my style this new season. Attack, attack, attack.  Myeloma won't know what to do. Myeloma will be on its heels.  It's go time. It's a new season. Where is the opening game fanfare? Bands, prime time tv. All that.

A short message to myeloma

Saturday, February 22, 2014

Three Powerful Myeloma Voices

If you'd like to hear from three amazing myeloma patients who are powerful voices in the myeloma community, here is your chance. Please give each a listen.

Jack Aiello
http://www.patientpower.info/video/how-to-be-your-own-best-advocate

Pat Killingsworth
http://www.patientpower.info/video/the-importance-of-myeloma-research-a-patient-advocate-s-perspective

Cynthia Chmielewski
http://www.patientpower.info/video/a-patient-advocates-perspective-on-developing-myeloma-research

What to do, what to do?

I saw Berenson yesterday.  I told him he bumped me from Inside Edition. He didn't seem too interested. He's a great doctor, but not the best at small talk. Anyhow, it was my monthly visit. For my myeloma, which is of the light chain variety, we track the protein in my 24 hour urine and then test for paraprotein and get a % of total protein that is the bad paraprotein. Several months ago we had those numbers way down. The total protein and % were looking great. But for the past few months, they have been moving up.  Neither Berenson nor Phan seemed worried.

We were worried a few months ago when I was sick and getting fevers. But it turned out I had a bad flu and it wasn't the myeloma.  Right now I still feel real good. No symptoms.  But those numbers had me thinking. This month was another jump in my numbers. Something in my gut told me it was the myeloma regaining momentum. And if so, in my mind I figured we ought to jump on it. Nip it in the bud.

At Berenson, normally I wait for him to suggest something or say we keep doing what we're doing. But I jumped the gun yesterday and told him I thought perhaps we need to change things up. At the LLS blood conference last week, a doctor mentioned that there are times you can go back to previous successful treatments if you relapse. Save the new big gun drugs for later.  When I was diagnosed neither velcade, doxil nor thalidomide worked. So we tried Treanda (bendamustine), not a standard myeloma treatment in the U.S. It worked like a charm. So at Berenson, we discussed going back to it, to beat the myeloma back down. He agreed that would be the way to go. He recommended it, after I suggested it, if that makes sense. I don't think he would recommend something unless he thought it was the way to go. Right?

I've been fortunate with maintenance.  One short infusion every two weeks. Few side effects and I am leading a normal life. For nearly two years, this has been my routine and not a big deal.  Last night, I realized that going back to Treanda means some changes. Do I get my port put back in? I'll have chemo twice a week, two weeks in a row. Then I get a two week break. I'll have to miss a bit more work.  I'll actually be tired after chemo, which means I can't drive myself home from treatment and I'll need a nap when I get home.  I've been making plans for the next few months, I need to now redo my calendar.

A bunch of inconveniences come with going back on Treanda. So now I am wondering if we jumped the gun on making the switch off of maintenance. I read Pat Killingsworth's blog on the Myeloma Beacon, how he took a watchful waiting approach recently and how perhaps he should of attacked earlier. Pat has bone involvement. I have kidney issues. My bones have been good. I have avoided dialysis this whole time. Dialysis scares the living shit out of me. Much scarier than chemo for me.  And talk about a life changer. That is dialysis.  So I think my decision to go back to heavy duty treatment partly had my kidneys in mind. I'm eating regular foods and my creatinin number has been good for months. I want to keep things that way.

We'll see Phan on Monday and talk this all out. I was planning on starting the new old treatment Tuesday. Maybe it clearly is time to change. Maybe we can wait. That is something that I've told people and they've told me. There is no clear cut way to go with myeloma. It's a weird cancer. But you choose a path and don't look back. You go all in. You have to. You have to believe it's going to work. I do believe. But it's the timing that has me a pondering.

Wednesday, February 19, 2014

And Now a Word from My Mom

Well, here's what's been happening. I'm on an off week from treatment. Next week, I start a new cycle of maintenance.  This Friday is my monthly Berenson visit, plus we're throwing in a kidney doctor visit. First kidney doctor visit in months. This past weekend, I did my monthly 24 hour urine collection and comprehensive myeloma blood work. Also this past weekend, my mom was in town, visiting me and Leslie.

As you know, I've been getting into making videos for my blog updates. So since my mom was here, I asked her (pestered her) to make a video update to give a mother's perspective on this thing we call myeloma.  My mom lives in northern California. I'm in southern California. I am the youngest of three kids. I'm 52, but still the baby.  My initial diagnosis of myeloma was pretty shocking to all. Scary, stressful, and all that. The first several months I wasn't in good shape and we were all grasping to find a treatment that works.

As time has gone by, I've gotten better and gotten in to a routine. I'm at 34 months and I think Leslie and I have a handle on what we need to do. We live it every day.  My mom did move down to Long Beach when I was diagnosed to be available to help. She got an apartment nearby.  But a couple of years ago, as I transitioned to maintenance, she moved back up to northern California. So really for the last year and a half, she hasn't seen me every day and only knows how I am doing either through this blog or when we talk or when she visits.  I'm not the best sharer though. Yes on this blog I'm open about my thoughts and my treatment. But when it comes to talking to my mom or other family members, I am a bit more tight lipped. Why, I don't know.

So when my mom did her video the other day, listening to her, it hit me that this is still fresh and painful and difficult.  She's my mom. I can only imagine how tough it is to see one of your own children be hit with a serious disease.   I was overcome with guilt and sadness and pride and love for my mom. Cancer/myeloma is tough. We all deal with things differently. I drew some sharp lines for what worked for me. My nature is when the going gets tough, I hunker down, silently and in many ways independently. 

But my mom is quite a person. Strong and honest and caring. I'm lucky to have her. I've watched her video a couple of times and each time I'm blown away by her emotion and honesty and her heartfelt talk. She took making the video seriously. Like I said, I deal with this every day. I can try and have fun with it. Yes I get down,  but I try to stay happy and positive.  And as I said, my mom doesn't see it every day. She might not be at the point I am at.

I asked her if it would be ok to post her video. She said yes. I've debated it for a couple of days.But I think it portrays a good strong loving person, who is grappling with myeloma. Give it a look. I'm pretty sure you'll all agree with me.

Tuesday, February 18, 2014

March 7 Cure Talk on Fund Raising for Myeloma

Hello folks, are you curious about how you can donate and contribute to the myeloma cause?  The hows and whats will be discussed on March 7.  The panel will be me plus Brad Coustan a myeloma thriver who created the Bradstrong golf tournament, Kendra Goffredo a triathlete who's father has myeloma, and Wilma Comenat, who works for the LLS in Washington and puts on events such as the Big Climb which I did last year.  Give it a listen if you can. Here is the link:

http://www.blogtalkradio.com/curepanel/2014/03/07/fund-raising-for-myeloma

Friday, February 14, 2014

Listen to Ann McNeill Discuss Myeloma Labs

Yesterday's Cure Talk was terrific. Super informative. Oncology nurse Ann McNeill was awesome. You can listen to her talk here:  http://www.curepanel.carefeed.net/event/rsvp/18/

And here is a link to her slides that accompanied the talk:  https://docs.google.com/file/d/1b5gRhOGAnn0oskYtYtqNDhs9EemS5cg_mtIJU04EJZiQVNEM7EtB2Hmo-cTX/edit


Thursday, February 13, 2014

Understanding Myeloma Labs

There is a Cure Talk panel discussion today on understanding myeloma labs.  The link is: http://www.blogtalkradio.com/curepanel/2014/02/13/understanding-myeloma-lab-tests-and-results-with-oncology-nurse-anne-mcneill

My Almost 15 Minutes

First let's get business out of the way.  Today is Thursday, February 13.  Mid February already! We all say it, but time sure does fly by.  I have chemo today. Day 15 of cycle 22 of maintenance chemo.  Infusion of velcade and dex. Then at home I take revlimid and medrol.  This weekend is my 24 hour urine collection.  Next week is Berenson and the kidney doctor.  I did basic blood work earlier in the week and for the first time I didn't call for my results. I'll get them when I go to Phan's today for my infusion. 

We've been taking a cancer survivorship class. There are reading assignments and homework assignments every week.  There are perhaps a half dozen other participants in the class. I'm the only myeloma patient.  Really it's a group session of cognitive therapy, a term I didn't know until recently. It helps us balance the unknown and worry that comes with cancer. We do a lot of belief work, which means we're working to eliminate unhealthy thoughts and beliefs as they pertain to our cancer. I'm really enjoying the class and it is helping me cope.

This weekend, the L.A. Chapter of the LLS is having a one day blood cancer conference.  My mom is coming down for a visit and the three of us will be going to the conference to learn a few things.

Now on to other stuff.  As most of you likely know, Tom Brokaw announced he has multiple myeloma. Apparently he was diagnosed last August, but his announcement came a few months later. As with anyone who has been diagnosed with myeloma or any form of cancer, it's a shame and we all send best wishes and positive thoughts to Mr. Brokaw.  But this is also an opportunity to raise awareness about multiple myeloma, a not so common cancer.

Yesterday when I went to work, I had an email from someone at the tv show Inside Edition.  They found me from this blog and from I believe fellow patient Gary Peterson (who tracks survival rates at http://www.myelomasurvival.com).  The show was doing a segment on Tom Brokaw and wanted to add something from a patient's perspective. I called up the individual and made arrangement to go to their office to tape my segment. I left work, went home to change my shirt and pick up Leslie. I made it to their facility at 10 AM.  We met a few folks and were taken to a room with a couple of chairs, a camera and a staged library behind the chair I'd be sitting in. I answered questions for about 15 minutes. I discussed myeloma, what it is and they asked what Tom Brokaw might be facing. I think I did pretty well.  They also filmed me outside walking and leaning, pensively against a railing.

I rushed back to work, and told folks to set their dvrs for that day's Inside Edition.  Leslie meanwhile called my family to let them know. As always, I got a ton of encouragement for my fellow myeloma survivors. Seemed like a great opportunity to inform folks about this incurable cancer.  At 3:30 yesterday, a few of us went to someone's office who had a tv.  The show opened with several minutes on a 911 call related to road rage and then several minutes of how to properly rake snow off your roof. WTF????  Then it was the Tom Brokaw story. This lasted maybe 45 seconds. It had a quick video of Dr Berenson. And then it was over. No Matt. No me.  What happened? I was on the cutting room floor. Talk about bursting my bubble.

The night before at our cancer class we discussed the benefits of getting sick. I mentioned that getting cancer had gotten me over my horrible fear of public speaking. Even speaking in small intimate group settings made me super anxious and sweaty. But no more. I'll now talk anywhere, any time. Before cancer I never would have sat in front of a camera and answered questions.

So this opportunity at Inside Edition served two purposes. Mostly it was to raise myeloma awareness. This is key. But it was also a bit of an ego boost. Life it pretty routine. Wake up, go to work, come home, fight cancer. So this opportunity definitely mixed things up. Well, I was close. I almost had my 15 minutes of fame.

Tuesday, February 11, 2014

Social Media and Cancer

I've mentioned before how through twitter and social media, I've developed a great support network and met some amazing people.  Here's a nice article about this very topic.  Quoted in the article is Cindy Chmielewski, who is one of those people I've met through twitter. 

http://socialmediatoday.com/joan-justice/2157456/how-chronic-cancer-patients-use-social-media-stay-informed

Cure Talk Feb. 13, Understanding Lab Results

All myeloma patients are familiar with lab work. Lots of numbers. But what does it all mean? There is a Cure Talk Panel this Thursday Feb. 13 to discuss lab results.  The call is at 3 west coast time, 6 east coast time. Oncology nurse, Ann McNeill, is the guest.  Here is a link to sign up for this call.

http://www.curepanel.carefeed.net/event/rsvp/18/

Friday, February 7, 2014

A Solitary Pursuit

There are team sports, where all players are important and must work together while on the field. The Seahawks victory in the recent Super Bowl was a perfect example of a team being synced up. Then there are sports where the individual is alone on the field or court. Yes, there is a team behind the player. Coaches, sports psychologists, family, friends, support.  But when it comes time to compete, it's the individual who has to put into action all the lessons.  Tennis is very much like this. The player is all alone on the court. Strategizing, hustling, visualizing. All the things necessary for victory.

Get where I'm going here?  Today is an off day from work. So I'm using it as a myeloma tune up day. Gym, walk Gracie, acupuncture, relax with Leslie and therapy.  All these things are vital to me succeeding in this fight with myeloma.  It's a team effort.  I'm not alone.  But.... when it comes to putting all this into action and managing everything, it's me. I'm alone on the court. I'm the Andre Agassi of cancer fighters.  I can't speak for other cancer patients and other myeloma patients, but this is how I feel today.

Myeloma keeps going. Treatment continues for an indefinite or never ending period of time. During acupuncture, I use the 30 minutes to visualize my body healing. I imagine bones strengthening. I picture scar tissue in my kidneys being smoothed out. I listen to my breath.  I'm not saying I don't need other people. But when I'm doing certain things and managing the disease, it's up to me to keep my mind and body right. No one is going to do that for me. It's basically a full time job.

One of the things I talk to the therapist about is that lately I question why I need to do anything other than fight myeloma and enjoy life. Why must I work? Why must I sit in endless meetings?  Why do I have to deal with car problems? Why can't I wake up when I want to? Why can't I escape whenever I want?  Not sure I am making sense.  I'm frustrated with myself. My life is pretty routine, It's not much different than it was before my diagnosis. And I guess that's good. But it's also not good. Shouldn't I have drastic life changes after I've had a life changing event?  I've taken my previous life and added a full time job of managing myeloma.  I'm not whining and not complaining. Hey, I'm still alive and feel great. But wow the self directed irritation is annoying. But I'm working on it. It's part of today's myeloma tune up.

A Short Video About Myeloma

This was produced by Myeloma UK, but the facts remain the same.  It's just a couple of minutes long. Give it a look. 

Thursday, February 6, 2014

Damn you myeloma

Just a quick update. I'm good, no issues. But two of my fellow myeloma survivors, Pat and Yvon, have relapsed in the past few days. Let's all send positive thoughts and wishes in their direction. 

Sunday, February 2, 2014

Super Sunday Rocking Video Update

You all might be stuck with my video updates.  Here's my latest.  Feeling good!

33

Today is 33 months since diagnosis.  Keeping on keeping on.