Thursday, March 21, 2019

Lightning Round

I've got little to say. So...ask me questions.....starting now. Go...

Friday, March 8, 2019

Can a Middle-Aged Dad Still Perfect His Jump Shot?

Love love love this. 

Oh's my update

My monthly infusion was last week and I neglected to provide a post. To be perfectly honest, updating my status is so last year. I'm bored with it, tired of myeloma being my fricking focus and angry with how much it has changed my life. So, having shared that little secret, I can tell you:

- MRI of my neck and head were negative. My twitching continues, at a reduced rate, so it's likely drug caused and not neurological. Phew.
- Myeloma numbers are still great. Creatinine is in low 2s.
-I put on some holiday pounds but back on the program. 10 more pounds to go to get to the goal of 175.
-May 2 is 8 year anniversary of diagnosis. Suggestions for how to acknowledge/celebrate?

MMRF Spring Webinar Series

First up is a Webinar on Immunotherapy on April 2. Click here to register. 

Thursday, March 7, 2019

Myeloma Lunch & Learn March 20

March 2019 Lunch & Learn With The Link

A FREE Telephone Support Program for Patients and Their Families/ Caregivers/ Loved OnesPresented by the National Bone Marrow Transplant Link, www.nbmtlink.orgJoin us Wednesday, March 20, 2019 at 12:00 NOON ESTSponsored in part by The Leukemia & Lymphoma Society

  • Multiple Myeloma Treatments and Updates

    Multiple Myeloma treatment has evolved over the years and there are many options to explore in treating this chronic illness.

    This month's telephone educational and support program goal is to create a better understanding of the role played by bone marrow/stem cell transplant and minimal residual disease in treating multiple myeloma. This program will include ample time for questions and answers. The call will feature Dr. Stephanie Williams, Division Chief, Adult Blood and Marrow Transplant Program, Spectrum Health Cancer Center. As well, Multiple Myeloma Journey Partner and survivor Barbara Hanson will share coping techniques and offer hope to all in sharing her experience. The nbmtLINK's licensed social worker, Jennifer Gillette, will facilitate the program.
    Here are the Call In Details:
    Tollfree number: 888-632-5004
    Passcode: 734928

Tuesday, March 5, 2019

Sharing a Post from the Myeloma Beacon

Living For Lamingtons: Do I Have To Be Relentlessly Positive To Live With Multiple Myeloma?

by Majorie Smith

There are a few things about having multiple myeloma that I don’t think I will ever get used to.
One of them is the way people react when they find out that, despite treat­ment, multiple myeloma is a cancer that comes back. It is an un­com­fort­able situation for many people (including me and all the Myeloma Beaconreadership!), and I have found that it is often very dif­fi­cult for some people to accept.
When I was first diag­nosed and began treat­ment, I didn’t know this fact myself. I just gradually realized that multiple myeloma was a disease where remissions were possible, but cures were not. The mission, for me, in those early days was to try to get me well enough to cope with the induction regi­men and then a stem cell trans­plant. Not surprisingly, none of the doctors or nurses talked about relapse during those early days.
But, of course, as I became more knowledgeable about multiple myeloma, I did find out about the "normal" pro­gres­sion of the disease. I also read about the hopes for a cure and the possibilities of some of the newer treat­ments, such as CAR T-cell ther­apy.
I prefer not to dwell too much on the inevitability of relapse but rather concentrate on the good days and my time in remission. I want to be positive about my life, and I feel that I do have a positive outlook.
At the same time, I also want to be realistic. I want to be informed, and I want to be as fit and well as possible during this time. I have great days, I try to enjoy all the good times, and I feel very fortunate.
However, I am not relentlessly positive!
When I see my myeloma doctor, he always mentions that I will need treat­ment again in the future. I don’t think he likes saying that anymore than I like hearing it.
So when myeloma rears its head in conversation with friends and family, I try to be realistic. I reluc­tant­ly use the word "when," rather than "if," when I refer to the myeloma coming back. I have noticed that my choice of words makes some people very uncomfortable; often they interject and change my wording to "if."
Other people ask me if I am really sure that the myeloma will come back, to which I usually reply that it always seems to return. I don’t push it, but I leave the person looking sad, and I don’t like that either.
Other people have said to me, once I have used the "when" word, that I ought to remain more positive and that having a positive attitude will help. (I think they mean that a good attitude could stop the myeloma from coming back, but I am not sure that they really believe that). I try to say that I do have a positive attitude, but that it is realistic at the same time and not “relentlessly positive.”
Another area where I may not come across as "relentlessly positive" is in planning ahead.
Many people I know are waiting to have a particular sought-after ex­peri­ence, such as a special vaca­tion. The reasons are many, but in essence they are all planning well ahead. Their reasons could be that they have not retired yet, they might be waiting until their children are no longer "on their wallets," they may be saving up for a trip, or they may be waiting until the time seems right.
I understand their mindset. I think it is a very natural part of being the age that most of my family and friends are in.
However, I cannot enter into this planning-ahead mindset. I would love to join them in the plans to go to Namibia in 2020 or Alaska in 2022. But I can't. As a result, I think that many people feel that I am being pessimistic when I show reluctance to join the plan and attempt to explain my reasons. Their response can seem to go along the lines of "Of course you will stay well until then; be positive!"
Planning ahead has taken on a very dif­fer­en­t flavor for me. I look forward to the day ahead. I am scared to look too far ahead. I can't wait to ex­peri­ence something that matters to me. I quite un­reason­ably want to do whatever it is that brings me joy and pleasure right now. I don't think that not having a relentlessly positive attitude is the reason for my behavior. Instead, I have learned to live in the moment and take every oppor­tu­ni­ty that comes my way.

Sunday, March 3, 2019

LLS Blood Cancer Conference 2019

Yesterday, I spent the day volunteering and learning tat the Leukemia and Lymphoma Society's Annual Blood Cancer Conference.  These conferences are held across the country by the different chapters and are truly an amazing event.  Of all the organizations I've been involved with, the LLS is one of my very favorites. They provide  insurance assistance, travel assistance, nutrition consults,  peer to peer interaction and much much more. I've been questioning my involvement with some of things I do, but I will always, in one form or another, be engaged with the LLS.

Thursday, February 14, 2019

Two Upcoming Events in Southern California.

The Leukemia & Lymphoma Society has their annual blood cancer conference on March 2 in Anaheim.  Click here to register for free.

And on March 23 in San Diego, the International Myeloma Foundation has their Regional Community Workshop. Click here to register for free

Friday, February 1, 2019

Cruise Control Redux

It's the start of a new cycle. Day 1 of the 28 cycle is my Darzalex infusion.  It's about a 5 hour drip.  Then for the next 21 days I'll take my oral chemo at home, pomalyst.  I'm the first one in the office today and am able to get my lucky (lucky?) chair. I'm tucked away in the corner, headphones on, napping, writing, watching Netflix and pondering.

Let's get to the good, the bad and the ugly (Unknown Gets Lonely Y'all)

The Good:
My myeloma remains well under control.  In May it'll be 8 years since diagnosis.  My kidneys keep on functioning, Berenson and Phan are happy, I got a great haircut the other day, my warts are gone, I'm strong, healthy and over 2 years on Darzalex. In February, I start volunteering at the Marine Mammal Care Center.  I'm going to DC next week for a panel I'm on with the National Coalition for Cancer Survivorship and that's about it.

I"m super excited about the new volunteer opportunity.  The MMCC has been on my radar for a while.  Recently I met a long-time volunteer via a myeloma friend and he had me come visit the facility for a sea lion release and it's pretty awesome. It's helping sick or injured marine mammals (seals & sea lions primarily) rehabilitate in preparation for a return to the ocean.  As I get deeper into my survival, my empathy and love for animals has grown exponentially and the MMCC does great work.  Two books really changed my thinking and truly touched me: Spying on Whales and Beyond Words: What Animals Think and Feel.

The Bad:
I've said it over and over again, the emotional challenge of myeloma can be almost as difficult as the physical. For the past two months, I've had this odd nighttime, lying on my side twitching/spasming of my head and neck and recently my body. It's been getting worse. It's accompanied by a 24/7 dull ache in my skull and upper neck.  Phan sent me to a neurologist.  The first one I saw thought it was a reaction to my drugs and prescribed  (yo gabba) gabapentin, an anti-seizure medicine to take at night.  Night one no problem. Night two I got violently sick from it and threw up.  When the vomiting stopped , the body spasms which normally last only a minute at most, went on and on, with powerful ferocity.  Leslie and an ativan helped me calm down.  But I will honestly say that I thought that was it for me. I thought I was going to die that night.  (note that Dr Phan yesterday asked me disappointingly why I didn't go to emergency).  Well, I made it through it night and was able to get back in to neurologist 1.  His suggestion....put me on a different anti-seizure drug and suggested we do a brain mri. Another drug? Well fuck that shit!  How about take this a bit more seriously.  I wasn't really clicking with this doctor, so we switched to neurologist 2 and he prescribed a basic muscle relaxer to take at night: flexeril.  It's helping minimize the twitching and letting me sleep sans pain and vomiting. Generally though my night time neck pain has increased. We already know that I have arthritis in the neck from 7 plus years of steroids.  So far 4 doctors (Phan, Berenson, Neurologist 1 and Neurologist 2) all think it's related to the shit load of drugs I take and the toxicity in my body from these. They tell me they highly doubt it's the myeloma and I shouldn't worry about tumors or lesions.

Last week, in the middle of the day I had a massive all encompassing brain ache. Leslie took me to the chiropractor and he gently manipulated my neck and used lasers (yes lasers) to give me much needed relieve.  Note that a medicine and holistic approach to surviving is key.  Note also that despite the aches, I feel pretty good when upright and can work out, walk, go to gym and function normally.  

Despite assurances from my doctors I'm a bit paranoid and won't be satisfied till we get the mri done and I see evidence that it's nothing.  Phan and Berenson anticipate physical therapy for the neck.  I'm horribly claustrophobic and will absolutely be sedated for the imaging.  And I am in an absolute horrible mood.  The thought, in my head, that I almost died pisses the fuck out of me. I realized I'm not ready to go, despite my bravado that I have accepted what myeloma means for my fate.  I panicked because if I died I wouldn't be able to all the things I need to do.  I have things to do and self improvement to accomplish.  So I am walking around with heightened anxiety.  I can't stand getting in my car and driving right now. I'm just way too angry to deal with crappy drivers texting and such in their cars.  And trust me, you wouldn't want to be around me right now. 

Let's move on to the ugly:
While I want to not be around people right now, there's a loneliness to this cancer experience. Hard to explain. I've heard about from others and now I am experiencing it. I saw my therapist this week and talked to Phan, who continues to be the best doctor in terms of empathy and care for the individuals under his care.  Both said the loneliness makes sense but to work through it and continue to do get myself out there. To borrow from the Tidying Up lady, I only want to do things that give me joy.  The marine mammal center is such a great opportunity. It's animals and not cancer related!  It's perfect.  I'm looking at taking an art or a creative type class (per a wise suggestion from my mom).  In addition, I've gotten into cooking and love it. 

So the ugly isn't horrendously ugly. I'm plugging along. Seems like once a year I have some sort of health worry that makes me evaluate life.  And isn't that important when it comes down to it?

Friday, January 11, 2019

LLS Support Information

The LLS has a whole host of free booklets on key support topics.  Follow this link to download or order.  One such booklet has to do with stress and cancer. And here it is for your information:

Friday, January 4, 2019

New Year, New Goals In Three Acts

Apropos of nothing, here's the first update of 2019, in three parts:

Act I. Listen

Moth Story with Beth Nielsen Chapman
Seven Shades of Blue by Beth Neilson Chapman
These Days by Jackson  Browne

Act II Vikings

Another season ends in frustration. By now it's expected but it's still disappointed to hear the kerplunk of the beginning of the season hopes going into the toilet. And to put this season in perspective, here is my Top 5 of disappointing Vikings seasons:

1998  They were 15-1 and set all kinds of scoring record. They were cruising to the super bowl and instead a kicker who hadn't missed all season, missed when it counted most. I watched this game with my family at a friend of the family's home...Minnesota natives. We were so ready to celebrate Minnesota style. Nope.

1975  This is when my hatred of the Dallas Cowboys took root. A no call on a clear offensive pass interference helped Roger Staubach, Drew Pearson and the rest of the despicables eliminated the Vikings from the playoffs.   This was one of the best Vikings teams ever. I was 14 years old and had watched the game from my aunt's house sitting in her restored barber chair.

2009  We all should have known the Brett Favre experiment would end in failure. He got our hopes up with an amazing season.  At the very end of a game that would have sent the Vikings to the Super Bowl for the first time in over 30 years, all he had to do was fall down and the Vikings would win.  Simple. I can fall down with zero thought. Instead he throws an interception and that was that. Poof.

1987  A strike season. The Vikings were one the best teams that season. Against Washington in the playoffs the Vikings were driving to win the game. An easy catch for a touchdown was dropped by Darren Nelson. Argh!!  Nelson was part of a massively one sided trade with the Cowboys for Herschel Walker, once one of my favorite players. The trade was basically 12 players for one; Walker. The Cowboys went on to be a mini dynasty and the Vikings went nowhere.  Nelson eventually returned to the Vikings from the Cowboys and added zilch.

2018  In 2017 the Vikings were one game from the super bowl, meaning excitement for the 2018 version had folks super excited. In 2017 all the pieces were just about there. To add to the championship pedigree of the team, the Viking added a high priced and over hyped quarterback, Kirk Cousins. Supposedly he was the final piece of the puzzle. Two weeks ago, all the Vikings had to do was win one game to get in the playoffs; in their home stadium and against a Bears team that had already clinched a playoff sport.  And did the Vikings rise to the occasion? Nope.

And there you have it. As a reminder., the very first Vikings game in 1961 was 3 weeks before I was born. At the time, the parallel roller coasters for both me and the team was not known, but has become quite clear over both of our 57 years of life.

Act III Spirit in the Air

Going way back, sometime in 1989, I was wrapping on my degree at UCLA and had started working at the Port of Los Angeles as an intern. I had a decent sized studio apartment and was living the life. One night on the wall over my bed I was wakened by a scrolling hazy roll of frightening faces that continued for several minutes. I assumed it was caused by light from the outside, but I couldn't find any source. The faces just kept going and going for several minutes.

In 2005 I created a 45 by 45 list. It wasn't a bucket list per se, but was a list of 45 things I wanted to accomplish between my 44th and 45th birthday.  One goal was to sit down with a rabbi for the very first time in my life to discuss the meaning of life.  I met with a recommended rabbi and he told me that the meaning of life was to explore the meaning of life. This really struck a chord with me and even drives me now I face my own mortality.  Many years later this philosophy was echoed by a friend of Leslie's who said that life is basically art..subject to interpretation and to be appreciated.

In 2011, I started feeling not right about 3 months before I was diagnosed with myeloma. Fatigue, fevers, and night sweats were worsening exponentially every day. My primary care doctor was testing me for all kinds of stuff. But he never ever considered cancer.  In my gut I knew something was wrong, but I also how right I'd turn out to me. Two weeks before my diagnosis, I went to Las Vegas for a friend's birthday. I had considered not going given I just hadn't been feeling well. But I figured I'd rally once there. Within 3 hours of arriving in Vegas, I was hit by the worst yet combination of chills, cold sweats and then a fever that was burning me up.  I told my friends I was going to bed (at 4 in the afternoon). In the elevator going to my room, the gravity of my potential situation started to hit me.  The next morning, I was feeling better but planned to go home early to get back into the doctor's office. I rendezvoused  with my friend John for breakfast at the Mirage Hotel before leaving town. John knew something was up based on what he saw from me the night before. Up until then I hadn't mentioned to him nor anyone else anyone about my recent ills.  Walking through the casino to meet John, I was absolutely blasted by an overwhelming feeling that I  would be dying very soon.  This feeling was staggering and as clear as day.

Shortly after being diagnosed, I began having a recurring dream every night where I was driving somewhere in my old VW bug with my stepdad Ed as passenger. Ed had passed away several years earlier. In my dream (s) it was always raining and always dark. I'd be driving down a muddy and pitch black road and relying on Ed to direct me. Instead of Ed helping me get to my destination, he'd keep sending me off in the wrong direction. His purpose was clearly to prevent me from heading down the wet dark road.  In the same time period, when I'd close my eyes I'd see those same ghost-like faces from way back scrolling on the inside of eye lids. They'd be in the periphery of my closed eyes.  This lasted for several weeks. Eventually the dreams with Ed and ghost faces went away. The dark muddy road became calming palm trees on a small empty island.  I'd watch the trees sway in the wind whenever I'd close my eyes to take a nap. It was serene and calming.

In March of  2018. I had the flu.  For myeloma patients, a flu or minor illness can turn into something bad, very bad.  One night while battling this flu, I had a dream that I was already dead. In my dream I had died years earlier and was now stuck in purgatory (not a typical place for a a non practicing Jew), until I made peace with myself and apologized to people that had once been in my life. I woke up from the dream positive of it's truth. I woke Leslie to tell her and she said that no, I was still much alive and just dreaming.  I told Dr Phan once the flu had passed and he said I might be have been sepsis and hallucinating and probably should have been in the hostipal.  I dismissed Leslie's and Dr Phan's thoughts and continued tho think I was already dead.  Today I am mostly confident that I am still alive.  But I am also still certain of my need to come to a balance with my life if I wanted to have true piece of mind.

In early December,  I went to a myeloma support group meeting to hear a friend speak. I only attend support groups on as-needed basis.  After the meeting I was walking through the parking structure, alone, to my car. It was about 9 at night.  At one point, I sensed someone was walking directly behind me. I turned around to say what the fuck. But no one was there. I continued to walk towards my car and then saw a shadow next to my shadow from the overhead lights and again sensed someone walking behind me. I turned around again and no one was there. Shortly after driving home with the experience still running through my brain, I received a text from a friend's wife letting me know that her husband had passed away earlier that evening.  He had been diagnosed with cancer about a year earlier (not myeloma) and it had metastasized through out his body.  We'd occasionally chat on the phone and he'd always say how he was confident that we were both going to survive and how we'd take our show on the road to let people know about the miracle of our survival and the power of belief.

Yes, it's a running set of individually coincidental occurrences. Taken as a whole, I am left wondering about the meaning of life.  I doubt I'll jump  into believing in something that I never have before, but I am quite aware of a perhaps non-random world around me.

Lightning Round

I've got little to say. So...ask me questions.....starting now. Go...