Tuesday, July 29, 2014

Rest in Peace Arnie Goodman

We lost Arnie Goodman today.  Arnie contributed so much to the myeloma community. His regular posts on the Myeloma Beacon was so very honest and heartfelt.  His most recent post was less than 3 weeks ago. Read it if you get a chance. I re-read it today and knowing that he has passed, it made me that much more impressed by his drive and fortitude and fight and courage.

Below are what the Myeloma Beacon and the MMRF had to say about Arnie. Please read:

From the Beacon:

We lost an inspiring friend today.

It is with heavy hearts that we pass along the news that Dr. Arnold Goodman, known to almost all of us here in the Beacon community as "Arnie", died earlier today in the company of his family.

If you have not yet taken the time to read the almost 40 columns Arnie wrote for The Beacon over the past three years, now is probably a good time to do so.

As you read through the columns, you will get to know someone who many in our community came to view as a role model. Arnie's myeloma was persistent, but the disease almost certainly underestimated Arnie, because he fought back with every tool and tactic he could find.

Moreover, while he was keeping his disease at bay, Arnie made time to share with all of us the lessons and insights he was learning along the way.

Please join us in thanking Arnie one last time for his graciousness and generosity, and in wishing his family all the best during this difficult time.

Thank you Arnie ... and Godspeed.

From the MMRF:

Dear Friends, It is with great sadness that I am letting you know our incredibly visionary, inspiring, and brave friend Dr. Arnold Goodman died in Tampa, Florida today, July 29, 2014 with his family by his side at Moffitt Cancer Center.

Arnie lived in Tampa, FL with his wife Merle, son Sam, and daughter Dori. He refused to let the challenge that multiple myeloma brought him ever intrude on his vibrant approach to life, or his intense dedication to his family and friends. After being diagnosed in 2006, he received two stem cell transplants and multiple drug regimens with extended periods of remission, always remaining hopeful and courageous.

As a former practicing physician, Arnie took an activist approach in confronting multiple myeloma, enlisting a broad group of researchers, clinicians and other partners in charting his path. Not only did Arnie play an active role in his own treatment, but he also vigorously pursued the most promising science and new treatments for all patients in the relentless drive to a cure. In 2009, the Goodman family founded the “Beat Cancer with a Paddle” program, with the goal of engaging the widest community possible in having fun, raising money and generating awareness to support multiple myeloma research. More than 200 people attended the Goodman's annual fundraisers, ‘Sweetwater Paddle for the Cure’, with all proceeds very generously benefitting the Multiple Myeloma Research Foundation (MMRF). This support enabled the advancement of numerous, promising, new myeloma treatments that are benefiting thousands of patients worldwide.

 On behalf of all of us at the MMRF, our research and industry collaborators, as well as the multiple myeloma and cancer communities worldwide, we thank Arnie, his family, and his entire community for helping advance his vision of making the impossible a reality.

Sincerely,
 Walter M. Capone
Chief Executive Officer & President Multiple Myeloma Research Foundation

Sunday, July 27, 2014

Myeloma Survival

Gary Petersen has a blog titled http://www.myelomasurvival.com/index.html  The main focus is addressing myeloma survival rates/data, and he compares and discusses regions, hospitals and doctors.  Gary's main point is that you need to have a myeloma specialists. Your odds improve dramatically for a longer survival if you have a specialist.  Give it a read.

Monday Around the Corner and We're Off...More Chemo

Sunday afternoon.  Monday coming up quickly. I absolutely hate Mondays. Hate is strong, yes, but pretty accurate in this case.  This week will be days 1 and 4 of my latest cycle of Treanda.  (hopefully/likely the last Treanda for a while (if all goes as expected, we're back to maintenance next month)). Tuesday and Friday is chemo. We get to use the new port for the first time. Woohoo.  I made it the gym Friday and today, and believe you me, I was very careful not to aggravate it.  Part of the problem with Mondays is that for all the treatment and living healthy and machine mode stuff to work, I've got to remain positive.  Mondays for me bring all the crap to the forefront, thus making it hard to be positive.  I should send texts to my coworkers now telling them to avoid me tomorrow.

With this blah post, the summary is my myeloma is ok, we've seemed to stabilize things. We're going to blast it one more time. And physically I'm feeling tip top.

Saturday, July 26, 2014

Machine Mode

Marshawn Lynch is a running back on the Seattle Seahawks. When he runs, they often refer to him being in Beast Mode.  Yesterday as I was walking from my car to Berenson's office I decided I was putting myself into Machine Mode.  I finally feel normal after a month and half of surgeries, pain, chemo, fatigue and mental exhaustion.  But that's all behind me. I feel good. I went to the gym yesterday. First workout with the new port. And I guaran-fricking-tee that I'm not doing any exercise that might mess up this port. I've learned my lesson.  By machine mode, I mean that I'm focused. I'm focused on my fitness, on my nutrition, on my mental state, and I'm focused on being focused. I'm going to be like a fricking machine.  I just operate and that's all.

My labs this week were awesome. We saw a giant dip in my protein, paraprotein and kappa light chains....all my myeloma markers.  I had some drama with the lab (5th time in 9 months), where they didn't run the upep. The upep is vital.  It's taken from a small urine sample. In the past they've actually lost my sample and they've also lost blood.  Who does that?  Suffice it to say, I'm changing labs asap.  But this time, they didn't lose it, but they didn't test it.  So after a few phone calls and some yelling and some stress, they tested my sample and all is good. Of course, since the lab had issues, a small part of my brain thinks they fucked everything up and the numbers aren't valid.  That's doubtful, but it was a thought in my noggin.  Given my numbers, I figured for sure I'd be back on maintenance.  Berenson was very happy the results.  But he thinks since we had such a big drop, that we ought to stay aggressive and beat the myeloma down one more cycle. Then maintenance.  Dr B said if I really hated my treatment I could do maintenance. Sure I hate my treatment, but it's the dex I hate and that comes with maintenance as well. So what the heck, we'll do another cycle of the hard stuff (treanda aka bendamustine). Dr B also said that other patients are now on my regimen. He called it the Goldman regimen.  Hey, I'm somebody!!!!!!  The point is we are staying aggressive. We're putting myeloma on its heels. My foot is on the pedal. Full steam ahead.

I also talked to Berenson about my recent surgery and how we can keep my immune system up and not have me susceptible to viruses and such.  Leslie and I think that my constant taking of antibiotics can't be good for me.  That alone might impact my body's ability to fight stuff off.  But Berenson (as doctors tend to do) dismissed this. He said there are no studies that show long term use of antibiotics is bad. He also said that it's the drawback of treating myeloma....i.e. I'm gonna get shit.  We treat the myeloma first and then deal with the other things. I think all patients get familiar with this.  Another reason why I need to be in machine mode.  Machine mode with a Teflon coating.

Quickly I want to acknowledge two people. First is Leslie. She's done an amazing job as my caregiver and is vital to me being where I am with this myeloma. She's now acting as caregiver to her dad, who has a host of issues.  It's a tough situation.  I feel bad that she doesn't even get a chance to think about herself...to focus on her being her.  I think being sick has a guilt inducing effect on patients. Nobody, me included, wants to be a burden on anybody.  We want to be strong and not impact other's lives.

Second, a quick shout out Brad. He's the strongest and most focused person I know. He feels great but also has a challenging myeloma situation right now.  I have no doubt he is going to kick this cancer's ass, but let's all send positive thoughts to him.

Saturday, July 19, 2014

Thursday, July 17, 2014

Powerful Reading and Watching

I think we all know Brad by now. He's a fellow myeloma patient. We met through this blog. He lives in NY but we met face to face here in Cali when he was out for business. Last summer we went to a Yankee game in NY, joined by Amy, another myeloma survivor (or thrivivor as Brad call us).  Brad has a blog. His attitude is awesome and he's a real motivating force for me.  He probably gets sick of me mentioning him all the time.  Below is Brad's lastest post. Read it. And watch the Stuart Scott video that he has in his post. It is powerful stuff.  It'll make you think about how we're all approaching this thing.

7/17/14 – Hugs and Hand Pounds Part 2
If you know someone who is fighting Cancer and you probably do given the fact that you are reading this blog then you might want to take eight tiny minutes from your busy day to watch this
http://m.espn.go.com/general/video?vid=11225895&src=desktop&rand=ref~%7B%22ref%22%3A%22http%3A%2F%2Ft.co%2FBm13NUNQuZ%22%7D
I wrote about ESPN SportsCenter anchor Stuart Scott here:
https://bradstrong.me/2013/01/16/115-hugs-and-hand-pounds/
Stuart just received the Jim Valvano perseverance award at the ESPYs last night and his speech brought me to my knees in tears.
I have written much over the last 18 months about my journey and much of what Stu said and did goes through my heart and mind every day.
1. He said “When you die you don’t lose. You BEAT Cancer by how you LIVE, why you LIVE and in the manner in which you LIVE”
I get a ton of comments on how I live my life … The MANNER in which I live. It’s the only life I have so I am going to LIVE it while I HAVE it.
2. Another thing he said is that you have to fight like hell and when you are too tired to fight you have to lay down and rest and let someone else fight for you.
Often times I have written that as long as I am strong – as long as I feel good – it is my RESPONSIBILITY to fight for those who can’t fight for themselves. It is my DUTY to take away the burden of fighting Cancer from those too weak to fight.
3. Then he went on to speak about the 1000s of people who encourage him every single day.
That support for a Cancer survivor – scratch that THRIVIVOR (that’s my term for the combination of surviving and thriving since my Cancer is technically incurable) needs. I get that from all of you. Whether it’s a comment, a text, an email or a hug. That support is meaningful beyond ways that I could express.
4. Lastly, I lost my shit when he called his daughter to the stage. Anyone who reads this blog knows that the toughest part of all of this is my children. Having Cancer is easy. Trying to figure out how my children process it day in and day out wrecks me up. Everything I do – EVERYTHING – is filtered through how it impacts my family – Helene and the kids. They need to know that I ALWAYS had their back and I always will.
Stu – brutha – YOU are not alone. Congratulations on your award, your perseverance and for bringing down the house last night. When you are too tired to fight I will fight for you. Promise me the same.
Powerful, inspiring stuff.

Sunday, July 13, 2014

The Week Ahead

Dateline Sunday.  I made it to the gym yesterday and today. Very light workouts.  First workouts in a month.  Continued recovery from surgery.  But still not 100%. Actually not even close to 100%. But way better. I'm also coming down from my two week chemo cycle.  As usual the dex rollercoaster is in full effect.  Friday I felt like a mother fucking champ.  Strong, happy, energetic.  (note; two thumbs up to Dawn of Planet of the Apes).  Now I'm dealing with the other mixed bag of emotions that come with dex.  As always, this is the challenging time.  I need to fight through this and continue to do what I need to do. Exercise, eat right, minimize stress, and yes, rest.  I can definitely feel the workouts. Even without the myeloma, I'm 52, so the body is slowing down.

Tomorrow it's back to work.  My hardest two weeks in 3 years were the past two weeks. I've gotten past that, and tomorrow and this week ought to be a piece of cake.  In terms of myeloma, not a heck of a lot to do this week. Thursday I'm doing my 24 urine collection, followed by blood work Friday morning. Results a few days after that.  Then a Berenson appointment and then we'll know what my treatment looks like going forward. Fingers crossed I go back to maintenance. That shit is easy. Once every other week. Piece of cake.  I feel like I know my body pretty well now and can predict my results. But, I'm not sure what my numbers look like. If we recall, my myeloma impacts my kidneys. The cancer puts out paraprotein (bad protein), that goes through and damages my kidneys. The goal is to keep the paraprotein number as low as possible and let my kidneys rest.  When I was first diagnosed, I peed a lot. A lot. And that's because I was putting out a whole lot of paraprotein.  Lately, how much I pee has increased. Nothing like before, but more than I had been. But my recent small blood work shows no changes, so the increased pee could mean nothing. As we've discussed, that's the mystery of myeloma. You have to live life, enjoy life, not obsess over myeloma, yet be mindful of myeloma.  See the challenge there.

Also this Friday I get my port-a-cath aka port put back in.  It goes in the upper chest, just below the clavicle, under the skin. We can only use my right arm for infusion, blood draws, etc. My left arm has the never used fistula that makes it off limits. (note: fingers crossed that thing never gets used). So my right arm has taken a beating of late. The port will be nice, it makes infusion so darn easy. But it does restrict the type of exercise I can do. No heavy or repetitive shoulder lifts. That's what happened to my previous port, I think my working out damaged and irritated it, and we had to take it out. It's been awesome having it out. While on maintenance and without a port for nearly a year, it was like cancer didn't exist in my world.  So there is a psychological aspect of getting the port back. It'll be ok though, just part of the journey.  Again, anyone with thoughts on how I can work shoulders and upper body without damaging the port, please let me know.  And lastly, here's a photo of my previous port.

Friday, July 11, 2014

The Myeloma Beacon

The Myeloma Beacon is one of my favorite sites for getting input into other patient's experiences.  A recently column by a myeloma survivor, Andrew Gordon, talks about how myeloma changed things. It's a good read.  Here you go:

Myeloma Lessons: I Am Not Alone Anymore


The title of this column is a bit of an overstatement. I never lived alone as a her­mit in a cabin in the woods. I have loving, caring family and friends.
However, I have always been comfortable with a fair amount of alone time. In fact, I often crave it.
I heard a recent radio interview with Jane Goodall, the famous prima­tol­o­gist and anthropologist. The interviewer asked her if spending years in the jungle among the chimpanzees drove her stir crazy. She said, “Not at all. From the time I was a child, I always enjoyed being alone.”
I thought: That is me.
Even as an adult, taking long bike rides alone, or walks in the woods accompanied only by my own thoughts, has been comforting.
One of my fellow Myeloma Beacon columnists wrote recently that, prior to her myeloma diagnosis, she didn’t think too much about doctors and rarely needed their help. That describes me as well. In fact, usually when I went to a doctor, the result was: the tests are negative — nothing serious to worry about.
Which is why, when the first signs of myeloma appeared, it never occurred to me that anything was seriously wrong. That sore spot on my head that persisted for months? Just an invisible mole or an ill-fitting bike hel­met. The pain in my back/rib? Just a muscle strain or spasm.
Much has changed since my myeloma diagnosis was confirmed, and it changed rather quickly. I was ad­mit­ted to the hospital with severe anemia on a Friday evening, had a bone marrow biopsy the following Monday, and saw the myeloma specialist on Tuesday. A week later, I reported to the infusion center for my first Vel­cade (bortezomib) shot and Zometa (zoledronic acid) infusion.
I have always prided myself on being pretty self-sufficient. I have never liked asking for help or having to rely on others to do what I can do for myself. But, after the events I just described, it became clear very quickly that I was going to need a lot of help.
Some of the help I would need was obvious: Having a strong medical team of doctors, nurses, technicians, and other medical support personnel would be essential. Of course, I would also need the strong support of my wonderful girlfriend/caregiver.
But one thing I had not counted on at first was the physical restrictions I experienced. Once my transfusions took effect and I had my energy back, I felt pretty good (except for that pesky rib pain). However, my doctor said I had to limit the weight I lifted to 10 pounds.
Well, that seriously restricted what I could do around the house. Now, I must confess that I have not strictly adhered to that limit, but I have been careful about lifting heavy objects. So now I need a neighbor, relative, or friend to do the heavy lifting.
This sometimes makes me feel a little helpless.
This past winter was particularly harsh here in Pennsylvania, where I live. Plus, I had my transplant at the end of January. So my neighbor, my son-in-law, and his father had to shovel the snow around my house. All I could do is stand by the window and watch.
Another aspect of accepting help revolves around learning about dealing with the disease.
As most of you know too well, treating myeloma is as much art as science. To be sure, the science part is extremely sophisticated and is advancing at a rapid clip. But there is no complete consensus on how to treat a particular patient presenting a given set of symptoms.
There are “schools of thought,” different approaches, and strong but conflicting opinions among myeloma experts. My initial treating doctor told me that declining to proceed with a transplant would be “suicide.” Another equally prominent expert thought that position was silly. So how do we make these important de­ci­sions?
For me, the answer was, and still is, that I need help.
There are vast resources available online to research the disease, the treatments, and the developments on the horizon. It truly is amazing what is available in the way of research papers, interviews, and scholarly ar­ti­cles.
But just as important as the help available for understanding the science of the disease has been the help from fellow myeloma patients who have taken their time to share their personal stories and insights into how to deal with the many challenges myeloma creates.
Through the Myeloma Beacon’s discussion forums, I have met many people who have been so helpful to me. Sometimes they helped me by commenting on questions I have posted in the forums, and other times through an exchange of emails or telephone calls.
Coming to terms with the need for all of this assistance has not been easy for me. When you have been used to being the strong one, the one who can fend for himself, and the one who always has the answers throughout your whole life, it is difficult to become so reliant on others.
But there is a lesson here, as there often is when life throws you a curveball and forces you to change.
Becoming more reliant on others also brings you closer to those who step up to help. You appreciate not just the fact of living, but the people around you who make living a wonderful thing.
So far, dealing with my medical condition has taught me quite a bit about myself. But even more so, it has taught me about the great people who have come forward to help.
So I am not alone anymore, even in a relative sense. I am not happy for the reason why I find myself there, but I treasure the increase in company that I keep.

Thursday, July 10, 2014

Don Baylor

Don Baylor, myeloma survivor, 1979 mvp and Angels hitting coach suffered a freak broken leg on opening day this season.  The good news is he is back with the team. 

Wednesday, July 9, 2014

Finally

My old boss used to use the word "grappling" a lot. It was his way of saying he's wrestling with a decision.  He retired several months ago. Today I was in a meeting with his replacement. I'm a big fan. He used "grappling".  And I thought to myself, that's what I've been doing lately. I'm grappling with what's next. Tomorrow is the last day of this chemo cycle.  Then it's the drill. Full labs next week. Berenson the week after. Then we decide what my treatment looks like going forward. Phan tossed out the M word the other day. Maintenance. But I'm not hanging my hat on that one. A few months back we had such an awesome improvement in numbers from the initial blast of treanda (bendamustine) that I figured maintenance was inevitable.  And maintenance is a piece of cake. Once every two weeks, nothing too ass kicking (other than dex) and it means we've got the myeloma stable and under control.  I think that was Phan's point, I'm stable so let's hold it steady.  And this is why I am so fricking happy this cycle is wrapping up.  The combination of chemo and surgery has absolutely kicked my ass.  Yesterday and today were the first two full work days I've put in, in almost a month. This morning I was beat.  Half a tab of nuvigil did the trick for me. I was enagaged and clear headed. Work serves several purposes. It provides normalcy.  It provides income. I actually really like my job. I enjoy doing what I do. I have ownership, so I hate missing work.  Recently I got a nice raise and promotion.  Pretty nice. It's that much sweeter knowing that I accomplished these things while dealing with myeloma and dealing with life.  But, and I think this is the big challenge, when I/we feel bad it makes it hard to see how I can keep things going.  A couple of times this past month I've thought that holy shit, I can't do this. Now that I'm recuperating, I'm feeling positive again, like this is sustainable.  Friday is a scheduled day off from work.  My first truly free Friday in a while. I plan to get a light workout in. It'll be my first workout in a month. It'll help make everything seem better.  The new Planets of the Apes movie? You know I'm all over that.

Despite feeling better, I realized I sure better get my ducks in a row, in case I can't work. I've been a bit lax on that.  I suppose part of it is that I always assumed I would kick this myeloma's ass, so why plan.The mother of one of Leslie's best friends passed away last week. The funeral was this past Monday. It was acutally a beautiful and touching service.  The woman who passed away, who I knew, was this amazing positive and caring and giving person.  It got me thinking about my mark in this world and how I'd be remembered. And here's more grappling.  I think there are things for me to do.  There are people and places that I need to connect or reconnect with.  But it's tough, just juggling regular life stuff with my health, and I'm left unsure on how I can accomplish certains things. Time, energy, money all come in to play.  Plus, and I'll use this word again, I'm not sure how I'm doing things is sustainable. I'm starting to feel pretty normal again but what if I feel bad? How many times can I pull myself back up? And, perhaps I'm being greedy, just having a routine isn't enough for me. So what, I'm in my routine? But I need to mix it up. Shake up the routine while maintaining normalcy.  How's that happen? Heck if I know.

Don't get me wrong, I'm super happy with how I'm doing. 3 years and 2 months since diagnosis and I'm still thriving.  I don't want to be caught off guard though, so I've got a bit more grappling to do with what happens going forward. I debated about even writing this post.  It's pointless in a way, other than allowing me to vent, spill my thoughts.  But myeloma wise, there really isn't much to say.  That's a good thing.

Friday, July 4, 2014

4th of July

Happy birthday U.S.A.  Also happy birthday John Waechter, one of my longest and bestest friends.  He lives in Tucson, Arizona and back in the day I'm make a trip to Tucson every year to celebrate his birthday and Uncle Sam's birthday.  It's been a while since I've done that. I miss it.  This weekend and this 4th of July my plan is to do not much of anything. How things have changed.  Now that's I'm coming out of the tunnel of June hell, I can honestly say that the past week might have the absolute toughest week that I've had in a while. To be clear, the cancer is stable. That's the number one concern.  Although, I'm getting more certain that Berenson might change my chemo mix soon. Ideally I'd love to go back to maintenance. Maintenance is a piece of cake and not at all an issue,  I started a new chemo cycle this week, so we'll see what my numbers look like later this month and then I'll consult with Dr B.

This week included days 1 and 4 of the Treanda chemo, continued recovery from surgery and work. I worked about half time this week and even that was a challenge.  I've become adept at focusing and compartmentalizing and doing what I need to do.  But it was a challenge these past few days.  I did find a secluded office, however, where I could lay down and regroup for 10 minutes. That got me through the week.  The good news is I made it through the week. I haven't had a Percocet aka percosweat, in over 24 hours so I'm getting better. Saw the surgeon Thursday.  He said I'm healing ok, but it's a long process.  His social skills aren't the best. But no infection, which was my concern, so each day is better.

Talked to Phan about getting my port put back in.  That will probably happen in the next week or two. Recall, I can only use my right arm for blood draws, for infusion, for anything. I had my port taken out when I was on maintenance and it's been so nice. The port means some restrictions on exercise that involves the shoulder so that kind of sucks. But it is so much easier for everything. Kind of looking forward to giving my arm a break.  Maybe some fellow patients have suggestions of how to work out the upper body, without potentially messing with the port. Thoughts anyone?

Lastly, it's one of my myeloma friend and mentor's birthday today as well.  That would be Brad. Here is his birthday post.  http://bradstrong.me/2014/07/04/7414-birthday/   Feel free to read and tell Brad happy birthday!

Oh, one more last thing. Two days ago was month 38 since diagnosis. I totally forgot.  Cancer wise I'm doing good. Mentally and overall physically. I am bouncing back and getting stronger every day. Can't say the same for Nascar driver David Gilliland, a back of the pack driver who drives #38.

Thursday, July 3, 2014

The Cure Discussion

Here's an interesting post from a fellow myeloma patient, Nick, who writes about the "cure" question and myeloma. Pretty darn interesting.  Note that Nick lives in L.A. and I'm hoping that next time I see Berenson, I'll meet Nick in person.

http://nvdmyeloma.blogspot.com/2014/06/why-i-am-pain-about-this-whole-cure.html?m=1

Tuesday, July 1, 2014

July 1. June is over!!

Hey folks. Hellish June is over.  I had my first day of the latest chemo cycle yesterday. Tomorrow I follow up with the surgeon to ensure things are healing right. I'm feeling better day by day.  And I apologize for not giving details on the surgery, but this is one of those things where I've opted to hold back. But let me say this....everything is fine. It wasn't the cancer. It was cleaning up stuff resulting from my lowered immune system. As I've said before, myeloma patients are all faced with staying on top of their immune system.  If someone is sick, I avoid them. I was my hands constantly.  And things that might have been dormant in our body, might become active. It's one of those things.  Thursday is day 2 of this chemo cycle.

I want to say I feel good.  We've got a handle on everything.  But that doesn't mean I'm not going to have some tough times. June was one of those times. But it's over and I move on.