Sunday, May 26, 2019

Bonus Time

I'll admit it, I'm feeling good right now. I've been on darzalex and pomalyst for about 2 and a half years. I just got my latest lab results and my numbers are as good as they've been since I was diagnosed, and probably better than from before I was diagnosed. It's interesting, you look back on a few things and you wonder how long you had myeloma before it was diagnosed.  Like how I tried to donate blood in 2009 and I was denied and told to go eat a steak because I was anemic back then. Anyhow, I'm getting in good shape, volunteering, taking classes and all is well.

And I'll also admit this, feeling this good makes me a bit nervous. 8 years. Honestly, it's exceeded my expectations.  There's nothing really special about the number 8, but since May 2, I really feel like I'm on bonus time. This is all gravy...provided I keep feeling well and keep checking things off my theoretical list. I haven't yet put together my 30 by 60 list, but it's in progress and I'm working on stuff already.  Plus, no one really knows how long darzalex will work. It doesn't work for everyone, it's a newer drug. And it's not like I'm waiting for it to stop being effective, but I ought to prepared for that eventuality

In April 2011 I went to Las Vegas for a friend's birthday. I was there for perhaps 3 hours and I got so bleeping sick. Fever, chills, uncontrollable shiver. I went to bed at 5 in the afternoon scared out of my mind. The next morning, I had a powerful sensation that I was dying. I flew home that day. The next day I went to a doctor to discuss why I'd been feeling weak and tired and fatigued and sweating at night and so on. He had me do a simple blood test as a normal thing before I'd do a colonoscopy the next day.  He called and said I needed to be in the hospital because I was super anemic. Like how was upright type anemic. I was hospitalized that day for a week or so. A day after my hospital release I was diagnosed with myeloma.  The next day I got a port, full body scan, transfusion and started chemo. And the rest is history.

I think in 2013 I went to Vegas with a friend. But I really wasn't feeling good, so I'm not counting it as a visit.  Tomorrow that friend and I are going back to Vegas and I'm viewing it as my first visit since being diagnosed. I'll definitely stop by the Mirage and have a beer at the bar where I couldn't finish a beer 8 years ago because I felt like crap. I'll walk through the casino where I had the "I'm dying" sensation. Wow, writing this sounds a bit morbid and strange...retracing my steps.  But for me, I suppose it's important. I'm closing lots of loops and this is one of those.  I'm super excited.  And of course I'll get my annual bet in for the Vikings to win the super bowl this coming season.  I've made that bet every year since 1995.  I did a calculation not too long ago, that if I'd invested that annual $100 bet on amazon stock instead, I'd have nearly half a million dollars.  It'd be nice, but come on, I'm locked in to making the bet at this point.  The Vikings winning the  super bowl is also on my theoretical list.  They say don't fret about things you don't have control over and the Vikings winning might be of those things. But I say hogwash....my energy has to translate into some semblance of a positive effect.

And that's it. Really not much to report. Cruise control. The first time I met Dr Phan he said that's the goal.  And here we are.

Friday, May 3, 2019

8 Years and a Day

Let's look back on the past 8 years.


This is two months before I was diagnosed. I was so weak and tired on this ride, that I had to be pushed on my bike.


This amazing group of friends got together for a haircutting show of solidarity.


The cutting begins.


The hair cutting result. It's hard to see but I had a mini mohawk going.


Even Gracie got into the spirit and asked for a mohawk,


I was admonished by a UPS man for abusing Gracie by giving her this cut.


My first port, just under the skin. It makes infusions so much easier.



For my first birthday post diagnosis these three took me out for a lot of eating. Oh and it was also my 50th.


For the first 12 months or so after diagnosis, I slept a lot. A LOT.

 
Being a caregiver is one of the very hardest jobs and Leslie totally nailed it. She's been with m every step of the way and even gave me shots to boost my immune system.


We even got married in 2012 in the midst of the scary times. Love is very powerful.


I can't even imagine how frightening it most be for a parent when their child is diagnosed with a serious illness. My mom is amazing and continues to inspire me.


Team Goldman's first event. The Big Climb in Seattle. It's a fund raiser for the Leukemia & Lymphoma Society. It's a wonderful organization with many patient support programs.


#TeamGoldman


#Team Goldman


Team Goldman's second event. The Boulder Boulder 10k in Colorado.


For the Boulder Boulder, we raised money for the Institute for Myeloma and Bone Cancer Research, who along with Dr Berenson have been instrumental in my success.


I always represent the Vikings at treatment.


I typically get a huge dose of bendryl with my treatments and it leads to some crazy dreams.


I had to stop commuting by bike after my diagnosis. Eventually I was able to ride to work again and Momentum Magazine allowed me to share my story.



Health care is obviously a huge concern for all cancer patients.


At the Relay for Life, an American Cancer Society event.


Victory!!


I have been super fortunate to climb mountains with an amazing group of people, including these fellow survivors.


A couple of years ago, I climbed Mt Kilimanjaro with these fellow survivors and other folks who lives have been impacted by myeloma or are helping to find a cure. We raised money for the Multiple Myeloma Research Foundation.


Packing my pills for a two week trip to Africa took a bit of planning and effort.


And 8 years later, I'm going to continue to fight and make the best of it. As best I can I am going to live life and enjoy life. And of course throw some humor into the mix.

Saturday, April 27, 2019

T minus 122

122 hours till I hit the 8 year mark. I was diagnosed on May 2, 2011 at roughly 10:30 AM. I didn't know until several days later that May 2, 2011 was also the day the U.S. got Bin Laden.  Two days prior I had been released from an 8-day stay in the hospital for severe anemia and near kidney failure. One day earlier, May 1, I actually went to work for a bit. That was weird. What the fuck was I thinking? Well, looking back, I ask myself that a lot. The shock and fear and exhaustion and unknown makes so much a blur.

To this day I thank my lucky stars that Dr Phan just happened to be the oncologist on duty when I was hospitalized in late April 2011.  The myriad of other doctors I saw had no fucking idea what was wrong with me.  An infectious disease doctor spent 30 minutes with me trying to figure out if i had traveled to some foreign land and got too close to an infected farm animal. A trio of doctors from my primary care office came by every day and asked the same questions over and over, day after day.  Dr Phan knew right away, but he wanted a bone marrow biopsy to confirm.  Hence on May 2, we (me, Leslie and my mom) went to his office to get the word.  When I saw the hematologist sign outside his main door, I think it hit me what was up. Sort of.  In the meeting, he said the bone marrow results were due any minute. He sent me upstairs to get a blood draw, where I listened to a tattoo covered fella talking on the phone about how he hated needles but had to give blood. By the time I returned to Dr Phan's office, the results were in. He explained multiple myeloma to the three of us. He explained our plan of attack. I basically stopped listening when he said it was incurable.  Well shit.

May 3, I did a full body/bone scan and had a port inserted. I was hit by a fever and cold sweat while doing the bone survey.  I would have died right there, if I had my druthers.  The same day, I did my first chemo treatment. Whoa! whirlwind.

Dr Phan is still who I turn to when I need to talk or need to understand something about my disease. I love him. I saw him earlier this week and we chatted about sea lions, bikes and Flagstaff. A few days earlier I had returned from a road trip with my nephew and Gracie, to Flagstaff, Santa Fe, Colorado to see my mom who was celebrating her 83rd and hasn't slowed down a bit, Moab, Las Vegas and then home. It was an awesome trip. Really helped put things into perspective. Gracie got to experience snow for the first time and loved it. She's 12 and super healthy, but honestly I saw the snow experience as something on Gracie's bucket list. Dillon who lives in Lake Tahoe has his first petrified forest beer on the trip. I imagine he didn't know this was on his bucket list.

After May 2, the remainder of 2011 was a battle to stay alive. It took 4 different (or is it 5) regimens to find one that worked. Initially I went to City of Hope thinking I'd do a transplant, but they wouldn't take me, given the condition of my kidneys. The was my first education into the health care system and how we aren't always people, that we're numbers. And City of Hope worried that if I didn't survive the transplant given my kidneys might fail, that it would impact their stellar 95% success rate. What also makes Dr Phan great is he doesn't have a huge ego and he recognized that I needed to see a true myeloma specialist. He sent me to Durie and Berenson. Berenson was first and the three of us (Leslie, mom and me) went to see him. I loved his philosophy which was to focus on the individual and get them to where they have a quality of life that is acceptable to that individual. He is also anti-transplant. From Durie, I was convinced to harvest my stem cells, just in case I needed them at some point. 5 million of those suckers sit frozen in the bowels of Cedars Sinai.  Leslie and I were so scared to tell Berenson that we were doing this knowing his feelings about transplants, Durie and anything not Berenson.

I discovered that support groups aren't always the best thing for me. I went to one and left depressed with all the talk about who had died. I also learned that many folks saw Berenson as a  quack. But you can't argue with success.  I can share that in the fall of 2011 when we were still struggling to find anything that worked on me, Berenson blurted out that if we didn't find a successful treatment, I might not make it the end of the year.  I remind him of this, but he denies it. My first kidney doctor also mentioned death to me several times. She sucked and was summarily sent packing. I never did dialysis but she did bully me into getting an AV fistula that made for fun party tricks, with the high powered blood pulsing through my left wrist. She signed me up for dialysis without telling me at 5 AM in the dialysis center in her own office and told me I couldn't go anywhere else. Well, shit, that's not at all true. I declined and never did dialysis. I mentioned the other day my creatinine is 1.99, down from a high over 8 that first year. From statistical kidney failure to now just kidney damage. A renal diet, lots of water, and getting the myeloma under control did the trick.  For me dialysis is a line I won't cross.

For the first six years I kept working. For the first year and a half, it wasn't full time, but I was able to maintain insurance and a full paycheck thanks to the generosity of my co-workers who donated their sick and vacation time to me. That blew me away. However I had to go back to full time well before I was ready thanks to those mother fucking assholes in human resources, who pulled the rug out from under me and changed the rules just like that.  Leslie and I tried are darndest to have meetings and talk to people to plead our case. Leslie, as she has done for 8 years, fought for me and went all out to make things happen and nobody would talk to either of us. It was some real bullshit. At that point I was still in the throes of shock, fear and confusion and basically work pressured me into dropping the issue and returning to full time.  That is absolutely one thing when I look back where I should have fought back harder and sued their asses. Seriously.  But my mind wasn't right to take that step. Now that I'm not working I look back on those six years where I busted my ass to keep all the balls in the air and so much of it makes no sense. Like how did I do it? Work, treatment, sleep. That was it. How was even able to make any decisions?  High up the anger list is how work tried fucked me over. I mean I kicked ass at work. I didn't want cancer to interfere and I became a much better worker. Working allowed me to have some normalcy and to not think about cancer for several hours a day. And most people understood this, the ones that didn't....oh boy. But we move on.

I've come to realize that for the first several years, while I fought and battled and made sure I was as healthy as I could be, I wasn't really enjoying life. My expectations were that I wouldn't get to 8 years and that was fine seeing how life kind of sucked. And I'll be the first to admit that I am super fortunate to be able to not work now. It has totally changed my outlook on life and I'm able to enjoy things much more. I still feel a internal pressure to do shit sooner rather than later. We have no idea how long the darzalex will work. It's been 2 and a half years now and it's the best drug I've been on. But at some point it will likely not work. Myeloma is smart like that. And I now know what survivors guilt is all about. I have a couple of friends who are struggling right now and I feel guilty for doing so well. I try to minimize how good I feel when we talk.

And this leads me to a discussion of how much I have changed in 8 years.  I am much more understanding, empathetic and sympathetic of the challenges everyone faces. Perhaps to a fault.  I've always been big on personal space and HATED hugs, but now I'm a hugger.  I HATED public speaking but now I kind of like it and as an (unexpected) advocate I do a fair amount of it and I think at times I can go on and on and on.  We try to look forward but I struggle with regret and guilt from actions from pre-cancer Matt, and am even bothered by actions from the first six years of cancer Matt. I'm a huge softy for animals. I mean I always liked them, but now, if I was young and had energy and money I'd have a few acres for rescued animals of all kinds. And I do my best to not eat them,  I'm a home body now.  I still like going out for a beer now and again, but I really like quiet time and solitude. I no longer mind when people say they are praying for me. And where I used to get annoyed when people say "god bless you" as a sign off, I now actually return the sentiment. And I'm not even a god believer, but I like the heartfelt kindness when people say it.  I am a bit more spiritual just given some of the dreams I've had over these year that left me thinking I might be dead already and in purgatory, or left me feeling that I was about to die but I'm not ready for it. My step dad Ed who passed in 2005 has played a powerful role in letting me know it wasn't my time yet.  He visits me in my dreams every now and again and reminds me of that fact.  I'm a fledgling cook now. There is something meditative and escapism about it. I have a much firmer grip on who I am and as opposed to those first several years, I now look forward to living a long life and experiencing things to the utmost degree.

Yesterday was my monthly infusion, so today I'm flying on dex, which gives me a combination of rage, irritation, energy and so on. By Monday I'll be an emotional wreck and that lasts for a couple of days. By the middle of the week I'll be back to normal, whatever the hell that is. And Thursday at 10:30 marks 8 years. Who would of thunk. My goal has changed. At first it was to get through 2011. Then it was to make it two years, then five years, then ten years and now, I'm not sure. A lot I suppose.  We'll see.








Wednesday, April 24, 2019

Walk Up Song

For those wondering, I present..... my walk up song.


199......1.99

As I write this, I am 199 hours away from being at 8 years since the exact moment of my multiple myeloma diagnosis.  Coincidentally this week my creatinine is 1.99, which is stupendous. It's all fairly miraculous, if you go for those sort of things.  That first year, my creatinine soared to over 8, my nephrologist said I would die if I didn't do dialysis (which is I refused to do) and we couldn't get a drug regimen that worked. And here I am, 199 hours from 8 years later, healthy and kicking ass. Sure Friday is my monthly Darzalex infusion. Sure I take a daily 1 mg Pomalyst pill. Sure my arms and legs are covered with bruises given my thin skin (pun intended) and 8 years of steroids. Sure my emotions go up and down. Sure, blah blah blah. But overall, I give things a two thumbs up.


Saturday, March 30, 2019

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benadryl dose and get loopy. I doze off for an hour or so. Wake up, check emails, watch a movie and so on. The last hour is miserable. The benadryl has worn off and the dex has kicked in. I get antsy, grumpy and ready to get the heck out of there. I'll look at the drip bag about every five minutes to see if we've made progress. I'm usually the first patient in the office and can chose my regular chair in the infusion area. Today I strolled in about 5 minutes late (due to a sock change at home...had to put on my Vikings socks (after all it is Purple Friday)). That five minutes meant that I lost out on my normal chair off in the corner away from the coming commotion and away from the tv. Even the nurses mentioned to me that I lost my usual chair.

It's all about routine for me. I do my labs the same day at the same time, once a month. I always wear Vikings gear to treatment. I have my chair. I wish the doctor's office had "walk up music" for patients when they enter the infusion. You know...like when baseball players walk up to bat, the p.a. announcer will play a song picked by the player. 

I skipped Berenson last month but saw him earlier this week. My labs continue to look good, so he was happy. Creatinine by the way was 2.03.  I have one more infusion before I hit the 8 year mark. Pretty remarkable considering where we started on the journey.  And life sure has changed in that time. Some good, some great, some bad, some horrible, some just meh.  Last year we did a bowling celebration for the 7 year mark. This year, no big celebration. I would like to squeeze in a Vegas trip one of these days. I think I'm waiting on the massive celebration for when I hit ten years, which will occur in the same year I turn 60. That will be quite momentous and at one point in time very unexpected.

What else can I tell you? Not much. I'm sure I mentioned that my MRI showed no issues. I also did a heart stress test and echo cardiogram, to ensure all the years of toxins haven't impacted the ticker. It's fine. 

So we carry on. Where it goes is a mystery and isn't guaranteed. But I can guarantee that next month I won't be late to my infusion and I'll have MY chair.


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 right...here'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.
  • *IMPORTANT* YOU MUST CALL IN
    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.