Wednesday, August 20, 2014

The Taboo Topic

I'm not sure taboo is the right word. But what the heck, I'm using it anyways.  The topic is death.  I read a column on the Myeloma Beacon this morning from a fellow patient, April, and it really got me thinking. Generally the columns on the Beacon try to be uplifting and I've always found them motivating and inspiring.  One comment on April's column mentions that the Beacon columnists can be too positive and perhaps should discuss death and the reality of myeloma a bit more.  I disagree. 

I imagine all myeloma (cancer) patients in the back of their mind wonder how much time is left.  I know I do. But I also know it doesn't help me to dwell on it.  I'm fighting, I like living, and I'm going to go as long as possible.  When I was first diagnosed, I wanted to hear not a single negative story or anecdote. I went to a support group and it pissed the heck out of me.  All folks did was sit around and bitch.  Thanks for the lack of support, Debbie Downers. 

In the past month, two columnists from the Beacon have passed away.  In the past year or so, I've had people I know personally or through social media pass away from myeloma.  It's sad, sobering, shitty, scary and any other word that starts with 's'.  I'm approaching 40 months. I'm waiting for my latest lab results.  I hate waiting (for anything). I do my labs monthly. Lately I'm thinking I should do them every two months. What's the point of doing them monthly? Collecting my pee, going to the lab, blah, blah, blah.  All a pain.  I suppose viewing these things as a annoyance is a good thing. Viewing the myeloma as an annoyance is a good thing. It means I'm doing good and am able to view the myeloma as an inconvenience.  But in the back of my head, I wonder and think, this thing can come back with a vengeance at any time. Again, I don't obsess over it, but I know it's there.  And because of this, and as I approach my 53rd birthday, I really want to get my ducks in a row between now and my 54th birthday.  I need shit lined up and taken care of. I need my life running smoothly. I need a hobby or two and an accomplishment or two, so if I die and someone has to write a paragraph about me, they have something to say. Right now, my fear is that someone would sit down to write my obituary and they'd be scratching their head wondering  "who was Matt? What did he do?" Sure I have my annually increasing obsession, fascination and love of the Minnesota Vikings and all things Minnesota. I used to run a lot. I used to ride bikes a lot.  I used to go camping.  There are a lot of used to things.

My dad is in his 80s. He's been battling emphysema for some time. He doesn't get out much. He lives in North Carolina.  Last summer they made it up to New York for a wedding, that we also attended.  But that's it for the traveling. He sleeps a lot.  But whenever I talk to him, he's upbeat. He never complains. He's positive. Since the day I was diagnosed, he has been super supportive.

My mom is in her mid 70s. She's amazing. Her energy and passion are that of someone much younger. She traveled to Japan a couple of months ago. A trip to England is in her future. She still works.  It's pretty amazing. People on my mom's side of the family generally live long and healthy lives.

My boss is retiring tomorrow. He's 65. Still young. His wife is my age.  He has been my boss for 23 years. 13 at this job and 10 at a previous job. I guess at my previous job I did a decent job, given he hired me a second time. His rationale for retiring now is that he wants to enjoy life while he still can.  That is an excellent decision.

I kind of figure I might me working for a long time or until I kick it. I need money. I need insurance. My insurance is awesome. I'm lucky and haven't had anything denied in 39 months.  But that sucks.  I could get an infection or get sick at any time. That's the nature of myeloma.  But how crappy would that be?  Dying on the job.  Not enjoying life like I should be. I recently wrote about how I'm tired of obligations.  It's true.  Part of me wants to say fuck it, I'm all about me and nobody else. I think I should max out my credit cards. I should cash in my retirement accounts. I should travel. I should get a hobby. I should try new things. I think these things, because I'm don't want my obituary to say "Matt. He had a job" . Yes, I have Leslie and Gracie and family and friends and so on. But you know what I mean.....cancer forces us to look inward and to look at ourselves with a critical eye. It's a team battle, but also a very personal battle. 

Crazy stuff right?  I'm not obsessing over these thoughts. But they are on my mind lately.  On one hand it's freeing, I feel like I know what I'm going to die from. That makes it easy.  I just don't know when.  Robin Williams suicide hit me in a strange way.  I got really bothered when I'd read comments saying he took the selfish way out. Bullshit.  It was his life. And as with anyone, if they don't want to live, so be it. It's their choice. Suicide isn't a selfish act.  It's a freeing act.  Note....I'm not even close to being suicidal. I like living.  But I will say, when I was in the hospital for days on end, early on in my myeloma journey, I thought about how I could end my life.  Lying in bed 24/7, feeling like hell can make you think those thoughts.  But I haven't had a hospital stay in over two years....knock on wood.  But maybe I need a back up exit strategy.  Well, first I'll focus on getting my ducks in a row and finding a hobby and exploring life. One thing at a time.

The take away is that I have myeloma. I'll probably die from it. I just don't know when. Could be in a month. Could be in 25 years. 

Thursday, August 14, 2014

Today....

Collecting pee (using new lab to avoid having blood or urIne get lost), worked, went to luncheon for this summer's high school interns.  Today was their final day.  My intern (Asia) was awesome and is starting at UCLA in the fall ( go Bruins).  And that's my day.  Tomorrow blood work, procrit shot (to boost blood count) and regular old work.

Sunday, August 10, 2014

There's no I in team, but there is an I in remission

I recently passed 39 months since my diagnosis.  I'm doing pretty darn well. Yes I had a relapse back in March, but we were able to reach into our previous back of tricks and we've been using Treanda (bendamustine) to beat back the myeloma.  In a week I'll do my monthly labs and we'll know what happens going forward. More treanda? Maintenance?  We'll see. 

Friday I saw my cancer coach for the first time in a couple of years.  She was instrumental in Leslie and me developing techniques to manage the disease and to manage the people who care about me.  I've developed a heck of a support network. Fellow patients who provide me with motivation, inspiration and targets to aim for.  Here's what I've learned. We all deal with this shit differently. Just like there is no one size fits all for treating myeloma. There is no one size fits all for how to deal with the mental challenges. 

To be clear, I've never reached complete response or complete remission. I've got an aggressive myeloma that requires real mindfulness.  But I'm also fortunate, I feel good, life is normal.  Lately though, I worry that as the months pass by, it's just a matter of time before the myeloma regains some momentum.  I'm not bothered by this. I've accepted this. And by accepting this, it doesn't mean I'm not going to fight like heck to kick myeloma's ass.  I might have slipped in a double negative that negates my point. But you know what I mean.  But in my acceptance of this, I worry that I'm wasting my time. I go to work. I stress about bills. I stress about not keeping in touch with people. I feel myself getting bogged down in obligations.  I know many people tap into a vast network of family and friends to deal with a cancer diagnosis.  I took a little different path. I wanted to retreat into my own cocoon and dig in for the fight. There are times, where I wish I had that tight bond of support. Family game night. Friends cooking meals.  I miss that. But I also know I'm a bit of loner and it's hard for me to share. It's ironic in a way.  I don't want people to treat me any differently cause I have a cancer.  But there are times that I want some acknowledgment of what I'm dealing with. As time by goes by, I think people forget. They see me living a normal life. Matt must be ok.  I let obligations eat me up. I carry around guilt that leads to bitterness. I think this is why I retreat a bit. Some friends of ours had a cancer scare last year.  He was diagnosed, treated and got to complete remission in a span of 12 months. To celebrate remission, they bought themselves a new car.  Great news. But at the risk of sounding ugly and petty, where is my celebratory moment or purchase?  I'm 39 months and counting and haven't reached a point where I can say "hot damn, I'm cured!!!" 

I suppose that's the frustrating thing. What's my status? What do I want from people? What do I want from myself? I know that I'm increasingly wanting to simplify and downsize my life.  I need to enjoy every day. I need to not feel like there are things I am obligated to do.  Obligation. I'm starting to hate that word. 

Friday, August 8, 2014

another cycle in the rear view mirror

wrapped up cycle number who knows what today. Next week we do our monthly labs and then we determine if it's more heavy duty chemo or if it is back to maintenance.  Saw my cancer coach for the first time in a while today. Also helpful. While I am in machine mode, I also need to simplify and enjoy life. Yard work, stress, blah blah blah...I have no use for you.  balance, balance, balance. I'm a libra, so balance ought to come naturally.

Saturday, August 2, 2014

39

For those into numbers, today marks the 39th month since I was diagnosed with multiple myeloma.  That's pretty darn good.  Note that I've been alive for 634 months. Myeloma has occupied just over 6% of my life.  Not so bad.  Also note that two weeks before I was born, the Minnesota Vikings played their first regular season game, beating the Bears 37-13.  The starting running back that game was Hugh McElhenny, who gained 25 yards rushing and 54 yards receiving, scoring one touchdown.  McElheny's number that season was 39. Bringing us fulll circle.


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

It's not just a port

It's a Power Port!!!

Hello Port

It's back. Just in the nick of time. Lots of issues finding good veins today. 

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.

Sunday, June 29, 2014

Gotta Come Clean on the Hell Month of June

I try to be honest with how I discuss and share my myeloma journey.  Some of the mental and personal stuff and thought processes, I don't share.  But when it comes to the physical aspect and challenges and opportunities of myeloma, I try to share as much as I can.  I do it for me.  It helps to vent.  I do it for my family and friends. It keeps them updated. And I do it for other patients and caregivers.  It's not always easy fighting this disease and I question my own fortitude. Going into this, I never thought I'd be able to handle all this.  But it turns out I had no choice, and I do what I need to do and I try to keep moving forward.

For the past few weeks I haven't blogged much. I've been keeping a low profile. Today I come clean.  It's nothing horrible. I started with a phone call to my mom and apologized to her. What is it? It's a surgery I had two weeks ago that I thought I could keep quiet about.  But it's part of my journey. Part of my experience with myeloma and while minor in and of itself, has become a major aspect of my journey.  I'll give some details later. But first let me tell a story.  It starts with the BolderBoulder and our trip to Colorado last month.  

May was huge this year. May 2 was the 3 year cancervesary from my myeloma diagnosis. That's huge.  I'm still going strong.   Leslie and I traveled to Colorado to visit my brother and his family over Memorial Day.  Other family members who don't live in Colorado made the trip as well.  As a family we did the BolderBoulder 10k (a 6.2 mile walk) and raised over $8,400 for Dr. Berenson's non-profit myeloma research group.  Recall, and I state this with not an hint of hyperbole, that Berenson is the reason why I am still alive.  Raising funds for his research group was the least I could do to repay him and his crack research staff.  19 family members joined in the 10k.  Ages ranged from 6 month old Liam to my 78 year old mom, who led the way for Team Goldman.   It was a terrific event and a terrific weekend.   I felt great the whole time, hardly aware of carrying around an incurable cancer. 

To ensure I felt good in Colorado, I delayed starting a cycle of chemo by one week. Typically I get a two week break from chemo.  The additional week made it three weeks off, and I've written about this many times how I'm not real thrilled with any delays in my chemo. Makes me nervous.  Thus, when we had some plane issues on our return home to L.A. from Colorado,  I did everything possible to ensure I made it to day 1 of chemo. No way was I adding another week delay. 

Memorial Day also marks the end of May. For me, returning to L.A. marked the start of my June from Hell. I knew it was coming. While in Colorado, it was very important to me to have a great time, because I knew that the June from Hell was looming. As I write this, we're winding down on June.  The worst part of hellish June is almost behind me, but I still have a couple more weeks to go before I've conquered this difficult month.  A couple more weeks takes me to early or mid July, but I'll still refer to it as the June from Hell for all eternity.

What made it a hellish month?  Well, I've done a lot of debating about what to say.  As I said, in this blog I try to be fairly honest with my journey.  I think my family at times is taken aback by my bluntness.  I'm not the best sharer/communicator with things of a serious nature.  I've gotten better, but there is still room for improvement. In many ways I'm flat out tired of myeloma. Tired of everything that comes along with it.  I'm worn down a bit, and my response is to hibernate, escape, shut things/people out. 

Myeloma is part of my life. End of story. I can't escape it.  It's always out there, as are the either real or potential side effects from all the drugs and steroids we get.   Leading up to our Colorado trip, I determined that I wouldn't mention the fact that upon returning from Colorado I faced the normal chemo, but also had scheduled minor surgery squeezed in between two chemo cycles. I didn't want folks to know. I didn't want them to worry.  And I didn't want to talk about it. As I've discussed before,  everyone experiences illness differently.  My mode is to isolate myself.  Yes, it takes a village to fight the battle, but for me it also took solitude, allowing me to get my mind right for the fight.  Not telling my family about the surgery, meant that I couldn't blog about the experience. It meant I couldn't write about the June from Hell.

Well,  the surgery is now 12 days in my rear view mirror. Recovery is much slower than  anticipated. But I'm getting better, painful step by step.  I will say that post surgery has been the most painful thing I've ever experienced. Ever, not just during my myeloma lifetime.  Tomorrow I go back to work. I've been out for almost two full weeks.  Chemo starts tomorrow. More treanda, more dex, I have a feeling we might be changing things up next month. But that is next month. I'm just focused on getting through this month (well 6 weeks).

Having myeloma has taught me that discretion is out of the window.  There's not a part of my body that a doctor or nurse or team of doctors & nurses haven't seen. There's not a part of my body that hasn't been the topic of discussion.  But I still have some control.  All myeloma patients face lowered immunity and are faced with getting infections or other oddities.  Blame the chemo drugs and steroids for this, not just the cancer. In other words, the cure can be as dangerous as the disease in some cases.  I saw a dermatologist and we tried a couple of things to no avail.  I also couldn't take an oral medication, given my poorly functioning kidneys.  The only other solution. Surgery.  Surgery wasn't too complicated, but the recovery is a bitch.   

I've had a lot of free time these past two weeks. I discovered Frasier. It's now my favorite sitcom of all time. I've read. I've napped. I've thought a lot.  I've determined that once I get through this hell June and early July, I'm getting into tip top shape (I can't work out for about 3 weeks post surgery).  I'm going to eat right. I've gotten away from healthy eating and need to get back to it.  Proper nutrition can help keep the cancer at bay and can improve my immune system so I don't get shit like this again.  And (I've said this before), I'm going to live my life right. Won't be afraid to try new things. Won't settle.  blah, blah, blah.

In summary, if you've been wondering what I've been up to these past few weeks, here you have it. I'm almost back.



Saturday, June 21, 2014

Another Month

Friday was Berenson. I wrote earlier in the week how I wasn't sure what my latest numbers mean in terms of my treatment.  Well the decision is in: More of the same. We'll stay on the Treanda regimen for another cycle and then next month, we'll determine if it is back to maintenance or if it is time to try something else.  We've got the myeloma stabilized, which is really the goal.  Going forward the question is how best do we keep things stable with minimal impacts on my quality of life.  And that's the plan.  Monday and Thursday this week, it is chemo.

Wednesday, June 18, 2014

Which Direction

We might be at a crossroads. That's my prediction for my upcoming Friday visit with Berenson.  Which direction to go?  There may be several options to go and not just a clear one direction. Luckily the situation isn't hairy and we can smartly consider everything.  I wrapped up cycle 5 of treanda (bendamustine) a week and a half ago. Lab results are in. They're decent. A little decline in my numbers but nothing to suggest that this protocol is still uber effective, as it once was.  Remember, we took me off of maintenance back in March when I had a touch of the relapse. So, the question (in my mind) is what now. Back to maintenance? Perhaps. I feel good (other than some treatment related issues, but nothing major).  Another cycle of treanda? Perhaps. We give it one more chance to do it's magic. Or do we switch to some other newer myeloma drug? Pomalyst perhaps. It's hard to say. And I'm doing all this guessing prior to seeing Dr. B.  He might have a different take on my numbers.  He's all about quality of life, which I have. So to maintain my normal, perhaps the doctor will have something else in mind.  I guess we just wait and see. Friday is just two days away.

Video on Myeloma News with Dr Berenson

Here is a video from the annual meeting of the American Society of Clinical Oncology, with Dr. Berenson (my doctor) explaining the latest on myeloma treatment.

http://www.patientpower.info/video/continued-progress-in-multiple-myeloma-research-an-update-with-dr-james-berenson

Monday, June 9, 2014

Some Personal Feelings About Dex

hate, hate, hate.  I can't speak for others, but dex is such a mother fucking pain in the ass. It's a Monday and I've got a bunch of baggage to lug around (metaphorically speaking). 

Some Reading on Dex

Here's a recent write up by Pat Killingsworth on Dex. Eat my shorts dex.

http://multiplemyelomablog.com/2014/04/more-about-dexamethasone.html

Saturday, June 7, 2014

I'm a Man!!

I'm 52 years old. Diagnosed at 49.  A nurse told me yesterday that I look like I'm in my late 30s. That's all fine and dandy. But so much about this journey makes me feel like I am reliving my younger years. Questioning, wondering.  But it's not about regret.  It's about moving forward. I've been thinking a whole lot about how I move forward.  We passed 37 months. I feel awesome. But I'm still doing heavy duty chemo. Maybe we'll go back to maintenance, maybe not. The goal right now is to squeeze as much benefit out of Treanda as we can, get me stable and then see what happens later. All makes sense.  Several months ago, I had my port removed. We thought it might be infected. Whatever was going on, it hurt like heck and I had a nagging swollen right shoulder. It's been awesome having it out. I can work out, swing my arms, do whatever, with having that background thought that I might jar the thing loose. A scary thought given it's a direct line to my blood flow.  Lately though I've been thinking about getting it put back in.  I have to do all chemo in my right arm. Because of my never used fistula in the left wrist, the left arm is off limits. Off limits to infusion. Off limits to taking blood. Off limits to checking blood pressure. Because of the frequency of my infusion 4 days within two weeks, my right arm or hand is constantly bruised or in a healing process. Annoying. The port makes things so much easier.  Even just moving around during chemo is not a problem with the port.  I think I'll see what happens this cycle and if it looks like more chemo, that port is going back in.  For old times sake, here is my old port shortly after removal. I've got it somewhere here at home.



Later this week, probably Friday, I'm doing the monthly 24 urine collection. Myeloma patients are all familiar with this.


The fricking lab never found my small urine catch a couple of weeks ago. How do you lose a cup of pee? Ridiculous (or ridicules, depending on your spelling ability). So we do it again later this week and then follow up with Berenson.

When I was first diagnosed a movie came out called 50/50.  It was a comedy with a cancer theme, I refused to see it for a long time. Why the fuck would I see it?  I eventually did and it was darn good and funny.  Today, I finished reading The Fault in Our Stars.  Read it in two days. Fasted I've read anything. Other than perhaps Jaws which I read as a kid when I was laid up from the nail through my shoe into the bone, which lead to a bone infection which lead to a bone spur that I had removed about a year before I was diagnosed, which leads to my theory that the spur removal released cancerous toxins into my system, which lead to myeloma. A theory. Water under the bridge. Anyhow, this book is absolutely awesome. It's about teenagers with cancer. The movie comes out this weekend. A must see. My nurses read the book and told me I'd cry. I did. But then again I cry pretty easily. But let's not forget...I'm a man!!! And while the story it is about teens with cancer, I found so much of it rings (rang?) true.  The mark we leave, the mortality question, true love and so on and so on. I strongly suggest folks read it. But this brings me to the statement that I'm a man. I am 52. But as I cruise along, I sure feel like I have more and more questions about me and about what I'm doing. Quite a quandary.


Next week is the start of the Port's summer high school intern program. Remember last year, I fought having an intern, but it turned out to be a great experience, so I'm doing it again. Me=mentor. Funny right? Last year, during the mentor orientation we had to say who our mentor was. I really struggled with this question. Not one person jumped out at me. I felt a bit loser like.  I think this year, it'll be a bit easier. I think last year, I partly didn't want to have my mentor be cancer related. But now I think that is the case. As much as I don't want it to be, I am myeloma. That's me. That's cool I suppose.  I've met so many amazing, inspirational people. Brad, Amy, Bill, Cindy, Debbie, Steve, Pat, Gary and so on and so on. And speaking of Brad, it's time for my Brad plug. That guy fucking kicks ass. He has his second annual Bradstrong golf tournament later this month, raising money for the MMRF. He's approaching 90 thousand raised.  That is awesome. Here is the link to his tournament information.    http://bradstrong.me/bradstrong-golfs-against-cancer/   Brad's also a bit a fantasy football guru. And he's managed to fit in writing an on line column on fantasy football and recently did a 10 minute segment on XM radio.  My point is that Brad is doing myeloma right.  

Also one last thing, here's the most recent post from Pat, who is dealing with a relapse right now. Pat is super important to me. I learned to be open and honest about this journey. And I can turn to Pat whenever I have myeloma questions.  His attitude and positivity is 100% infectious.   http://multiplemyelomablog.com/2014/06/mayo-clinic-zen.html

Friday, June 6, 2014

Myeloma Treadmill

Round and round we go. Today I wrapped up the final day of the latest chemo cycle. In a week, I'll do my labs and then see Berenson and then I'll know if it's back to maintenance or more Treanda or who knows what.  This is how it is. This is myeloma. I've said it before, I'm fortunate to be doing as well as I am. Life, generally, is normal.  Or I've adapted to the new normal. But I still have the unknown hanging over me.  When I had the 3 weeks off treatment, I felt great, lived and never really thought about the myeloma. That's good.  But when I'm in the midst of  a cycle I get the dex induced mood swings and associated doubt & worry.  I'm a fricking champ is what I tell myself, and I fight through the roller coaster emotions and tiredness.  Last night I went to bed at 7. That was nice.  But as you can see, nothing really to report. Just keeping on keeping on.

Saturday, May 31, 2014

Back Home. Slapped by Reality

Came back from Colorado and doing the BolderBoulder 10k on Tuesday.  The trip and experience was A-1.  We had 17 family participants, some of whom I haven't seen in years, plus one who hadn't seen ever. That would be Liam, my niece Destiny and her husband Justin's 5 month old boy. I guess that makes me a great uncle. Or is it grand uncle?  My brothers kids have all grown. Megan, his oldest, cut my hair. Much needed. Really the best cut I've had almost ever. The problem now is she lives in Colorado and I live in California. What happens next month? Anxious about that already.  The 10k was the capper. So much fun. 50,000 participants, with maybe that many lining the route handing out beer, belly dancing, slip and sliding and so on.  My Mom was a champ. She flew in from Berkeley and did the walk no problem. 6 miles.  Our fund raising tally hit $8,300, thanks to some last minute persuasion by Suah.  Team t shirts provided by Leslie.  And if you're interested, I'm keeping the donation page up for a while if you'd still like to throw some dollars to a great cause.

We flew home Tuesday as I said. I had a flight scheduled to land at OC airport at 12:30 with a new cycle of chemo scheduled for 2 the same day. I took an extra week from chemo so I'd feel good in Colorado. So making Day one, was critical for me. About 15 minutes from landing, our plane started making lots of turns...right turns. We were flying in a holding pattern. 20 minutes went by until the pilot came on to say we were diverting to LAX where they had longer runways. Our flaps weren't working. The pilot said we'd see emergency vehicles on the ground when we landed, but not to be alarmed.  We landed no problem in LA, saw one fire truck and all breathed a sigh of relief. For a few moments as we approached the runway, I had did have concerns and cinematic type visions of the plane skidding off the runway and bursting in flames. I'd imagine other passengers did as well. I think Leslie did, she posted something on facebook just in case. Anyhow, the possibility of the plane burning didn't get me get me too excited. Perhaps because of the past three years, I'm at ease without whatever my fate might be. Maybe I'm being overly analytical on this. And that's not to say I'm not going whatever I can to stay alive. But I was ok. I'm kind of ok with the cancer. But.....after we landed, they said they were keeping us on the plane, so mechanics could check it and determine if we could return to OC. I called Dr Phan to see how late I could get to his office for chemo. I was already late. He didn't answer the question, and instead told me to remain stress free. Umm ok.. kind of late for that. After 30 minutes they said they'd be taking us off the plane, the mechanics never showed, letting us get our bags and then they'd bus us to OC. WTF.  By the time we got off the plane it was approaching 3:30 and no buses were in sight.  Leslie called Phan again and he said I could wait a week to start the new cycle. No, no, no was my answer. Fuck the bus. It was cab time.  $75 dollars later I was at Phan's for day 1, after disregarding Phan's and Leslie's advise to calm down and wait a week.  I might have lost my shit for a minute or two, but it all worked out.

So Chemo Tuesday, back to work Weds.  Back to the daily routine, back to the daily stresses, worries and all that.  I had done lab work right before we left. At chemo day 2 yesterday, I got the results, but the key number was missing. The F'ing lab has done this before. It kind of makes my results useless without the UPEP number, which give me a percent of the protein that my body is producing that is bad protein.  On a side note...ate a lot of meat (protein) while in Colorado (TWSS) including Elk burgers that my cousin Heather's husband Will caught and made. Normally, I wouldn't eat that. But I did and it was darn good meat.

I feel pretty good. No worse for the wear after the 10k. Note that we walked and didn't run.  Two days of chemo back in the books. The steroid rage has hit pretty powerfully today. Going to try and work through it.




















Tuesday, May 27, 2014

Team Goldman

Success!!  We all finished the BolderBoulder!!!!!

Saturday, May 24, 2014

Almost BolderBoulderTime

We're here in Boulder, Colorado. It's Saturday. Monday is the 10k. Some 50,000 are doing it. And more importantly, I've got 18 family members joining me. With money raised, we flew past the $7,000 mark and it's not too late to contribute. The funds go directly to research into finding a cure for Multiple Myeloma as well as finding new treatments.  I' m fortunate that I was linked up with Dr Berenson and the Institute of Myeloma and Bone Cancer Research, which is why I'm raising funds for the Institute.

 With me, I fly home Tuesday and then go directly to chemo.  That's myeloma. And here's the link if you're interested in donating.  

Thursday, May 22, 2014

Sunday, May 18, 2014

Not So Fast

My previous post was about the woman with myeloma who apparently went into remission after receiving a massive dose of the measles virus.  Sounded pretty good, right?  Well not so fast my friends.
 
 
I've gotten a number of texts and email about this potential game changer. I was excited by it.  We talked to Berenson about it. As we know, Berenson is opinionated, a bit controversial and very sure that his way is the right way and so on and so on. He's also considered one of the top myeloma specialists in the world. That's right, the world.  Yesterday I went to a myeloma seminar put on by the MMRF.  Berenson was the program chair and spoke on a couple of different topics. A few months back, me, Leslie and my mom went to an LLS blood cancer seminar.  That was basically a waste of time, other than cookies at break time. Yesterday's conference was fantastic. I learned a lot. All the speakers were myeloma doctors and all focused on different topics. A couple of doctors made jokes about Dr B and his dogged determination to find a cure and about his steadfast opposition to the stem cell transplant. A doctor from the City of Hope spoke right before Dr B about transplants and as she was being introduced more jokes were made about getting her and Dr B in a debate on the merits of the transplant. Remember, before I saw Berenson, we did go to City of Hope, thinking I'd do a transplant. They denied me due to my kidneys. (and that is something to keep in my mind, when you hear tremendous numbers for transplants success rates (i.e. surviving the procedure) keep in mind that some places are quite selective about who they will transplant, not wanting to impact that percentage of success)  I'll listen to and follow Berenson anywhere.  He's performed a miracle on me.   I talked to a newer patient of Dr B who I had just met the day before in Berenson's office.  He lives in Vegas. His primary oncologist in Vegas actually dropped him when he heard that Berenson was his myeloma specialist. That's bullshit. 
 
Oh, by the way, Berenson isn't worried about my numbers. But he does want to me to continue on treanda. I handle it well enough so we're staying aggressive.  He also gave me an extra week off, so I will feel tip top for the BolderBoulder. And he was quite pleased with our fund raising success. If you haven't donated yet, you have one more week. It benefits Berenson's non-profit research institute. One more shout out to my recently reconnected with friend Suah. She's got perfect strangers donating to the cause.  That is also dogged determination. Here's that link
 
Our Designed by Leslie Team Goldman t shirts will be ready this week. In time for the 10k. Team Goldman will be properly attired. We've got 18 family members doing this thing, ranging from 6 months to 77 years. Very impressive.
 
My point is that we asked Berenson about the measles and he got more worked up than usual. His first words were "that's not science".  He wondered why they'd do this big publicity push when this hasn't been tested, published in a medical journal nor peer reviewed.  One patient does not make a new finding, he said.  Dismissed.  Conversely, there are a whole lot of new treatments options. Options that have been tested, vetted, and approved.  I appreciate people sending me message about the measles thing. But it's too soon to get excited. 

Wednesday, May 14, 2014

And it keeps rolling

It's Berenson week. Well, Berenson day this week. We see him Friday. It's the monthly visit.  I got my labs results today. Normally when I get my labs I can predict what Berenson will say. Stay on path, change path.  Last month I had a giant drop in my numbers. So for the past month I've been thinking I'd have a repeat. My numbers would drop, I'd get off of Treanda and back on to maintenance.  To top it off, I figured my numbers would drop so much, that I could put off chemo for an extra week, allowing me to feel 100% for the BolderBoulder. By the way, we've raised almost $5,000 with a week to go in our fundraising. Remember we're raising funds for Berenson's non-profit research group, the Institute of Myeloma and Bone Cancer Research. As we know, Berenson is one of the leading myeloma doctors in the country and is vital to the success I've had.   http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman

Anyhow, that's how I figured things would unfold.  Today I got my lab results. They all sounded great. Standing alone, they're good. But then I came home and looked at last month's results. And I didn't get the drop I anticipated.  Instead they went up. Don't get me wrong, they're good. But they went up. So I have no idea what Berenson will say.  Am I at a point where maintenance is next. Or do I do another cycle of treanda? Or....I just don't know. It's a mystery. Well, we'll find out Friday. The unknown of myeloma keeps rolling along.

But the key is I feel pretty good. I've been going to the gym on my lunch break. Energy is up. Blood count is good, almost normal. Creatinin stays low. All good signs.

Saturday, May 10, 2014

Ho Hum

Winding down on week one off of chemo.  It took until about Weds this week for me to feel normal. Normal=Good. I've got one more week off, then it is back to chemo.  There is a caveat here.  I'm doing my monthly myeloma labs today. Results Weds and Berenson Friday. I'm anticipating him taking me off of Treanda and putting me back on maintenance.  That's my plan.  Given how my schedule works, I'd be back on chemo May 20. However, we're going to Colorado for the BolderBoulder on the 23rd and the event is the 26th.  The dex crash and revlimid induced leg cramps are something I'd like to avoid while doing a 10k.  So depending on my results and depending on what Dr B says, I might delay my next cycle until May 27.  I hate..HATE...missing or delaying a scheduled chemo treatment. It's only happened a few times over the past three years and it's been fine. But the delay makes me super nervous. But, it's always been ok and I'm sure it would be this time as well. Again, we'll let Berenson chime in. 

Speaking of the BolderBoulder, we've got a couple of weeks to add to our fund raising total. I set the bar high for what I want to raise...$10,000. We're inching up to $5,000.  That right there is impressive.  I'm truly humbled, honored and floored by the level of generosity of so many people.  It's overwhelming actually. But it's also a great feeling. The money is so important and I'm fortunate to be able promote the cause.  And what's been even more overwhelming is that people I don't even know are donating. Friends of my Mom and my niece, Jacquie, have contributed.  Friends and family of an friend, Suah, have been super generous. Suah has really drummed up a lot of support and I can't even vocalize how much her support and help means to me,   And it's not too late, so here's the link to my donation page: http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman

Today is the 10th of May. A week after my 3 year cancerversary. I'm cruising along.  But what next? I've written about this before. I'm thrilled that I am leading a normal life and am minimally impacted by the cancer. But I'm also wondering what's next. The routine doesn't always cut it for me. There needs to more. I work. I pay bills. I work out. I see friends.  All good. But let's look at work. I like my job. I try to kick ass every day.  But I've been doing the same thing for a while now. Let's mix it up.  So what do I do? Hell if I know.  If anyone has any lucrative, exciting job offers, that include a good health insure plan, let me know. 

This weekend the NFL draft is taking place. As I've said before I really wanted the Vikings to draft Johnny Manziel aka Johnny Football. The Vikings had their chance, but opted for a different quarterback, Teddy Bridgewater, who ought to be great in his own right.  I'm a little disappointed but optimistic as ever that the Vikings will be in the playoffs this upcoming season.

And that's all I got. I don't have much to write or say. I'm doing good, test results in a few days and we'll go from there. 

And lastly, thanks again to so many people who have donated.  It's awesome,