Sunday, November 29, 2015

Everything is coming up 5s

The thing about myeloma is that it is so different for everybody. Different in how it manifests itself. Different in how it reacts to drugs. Just plain old different. I've been fairly lucky. Year one was tough. but since then I've been doing pretty good. Sure there are struggles and concerns, but I'm cruising along in many respects.

Last week I only worked two days, then I had a much anticipated 5 day Thanksgiving weekend. Leslie and I were excited to head out to Palm Springs to spend the holiday with our good friends Matt and Rich, who recently got a vacation home in the desert.

On Tuesday the day before we were to leave, I had a dermatologist visit. I've constantly got a host of skin crap going on thanks to a lowered immune system and the non-stop taking of drugs and steroids. The dermo visit was ok. Also Tuesday, I felt like something was in my left eye all freaking day. When I checked my eye Weds morning, I saw a lot of redness and a sty. I had one about a year ago. The first time, the opthamologist prescribed steroid drops that took care it. This time Leslie called the doctor to ask if I can get a new prescription for the same drops. He said no, that he couldn't prescribe steroids, without seeing me. Are you fucking kidding me? I take a ton of steroids every week, plus a shitload of other drugs. Leslie tried explaining that to the doctor and told him we were leaving town. Instead he prescribed a useless antibiotic drop that has done nothing for my eye. The white head part of the sty is gone, but redness remains, so tomorrow after work it's off to the eye doctor.

This coming Tuesday I start cycle 15 of my latest go round with maintenance chemo; revlimid, dex and velcade. Note that for some folks, this is their regimen. On Weds December 2, it will be 55 months since my diagnosis. It will be 5 months until my 5th year diagnosis anniversary. Also in 2016, I am turning 55. Lastly, the star of today's Vikings game was number 55, Anthony Barr. That's a bunch of 5s right there.

 I skipped Berenson this month. I saw my numbers and they look fine. I'll see him next month.

And that's the report.

Tuesday, November 24, 2015

Myeloma and Fitness

When I was diagnosed, I was fit but a little chunky. I thought for sure with chemo and cancer that I'd lose weight. I figured I'd get lean and mean. Instead I got fat. Steroids made me hungry and I'd eat. Chemo made me tired and lazy, so I wasn't working out. Over the past few months, I've gotten super (well semi) serious about diet and exercise. I'd down to 190 pounds. I was 205 when diagnosed and ballooned up to 215 a couple of years ago. I'm 54 years old, so my metabolism has changed. I used to crank out the cardio to stay fit. Now I do minimal cardio and instead do weights 3 days a week. And while I haven't had myeloma related bone problems, I am ultra concerned about my bones, so doing weight bearing exercise is important.

But I think I've kind of plateaued. I want to get down to 180, so I'm truly lean and mean.  It's funny in a way, that I worry about my weight given I'm fighting myeloma. But it's actually more important than ever that I stay in shape. It's part of my routine for staying two steps ahead of myeloma.

I've cut beef and pork out of my diet and eat minimal carbs. I'd love to cut chicken out of my diet. But I need protein. Since my kidneys are jacked up, I can't really eat nuts, beans, soy...other potential sources of protein. And I eat fish.

My point of this post? Umm, not sure. Other than I need some fitness advise so I can hit my goals. I also need protein advise, so I can minimize the chicken. My not eating meat is health related and also because it's getting harder and harder for me to eat animals. I've become a quite concerned with animals and their fate and lot in life.

Saturday, November 21, 2015

Big week on the myeloma treatment front

Two new myeloma drugs were approved this week. That's huge!  Below is Pat Killingsworth's take. If you don't read Pat's blog,, you should. He shares his journey as well as important information on myeloma treatment.

The FDA approved Takeda’s oral proteasome inhibitor, ixazumib, late this morning. First daratumumab on on Monday and now ixazomib today. Velcade and Revlimid were FDA approved in the same year, but I don’t believe in the same week or even month. This is an historic breakthrough for myeloma patients everywhere in the United States. Access to two new drugs from two different pathways that show significant anti-myeloma effect.
I know a lot about ixazomib. We were considering using it as my next therapy if I didn’t transplant. We would have needed to apply for And as I’ve shared in the past, four members of my former support group on the Gulf Coast have had great, long lasting luck participating in several different clinical trials.
Still having trouble getting used to trade names. It may take me a while to start using the trade names, Ninlaro and Darzalex. I’ve hear worse. I should practice. This can get confusing!
Like Monday, I’ll do my homework and pass along important details Saturday. Personally, I think Ninlaro could have a bigger effect on the myeloma community than daratumumab (Darzalex). Only issue: it’s oral. I’m calling a patient tonight that can’t afford their Revlimid.
One more thought. Unlike Darzalex, Ninlaro is approved for patients that have tried one former therapy, not three. That means even easier access. This should make suzierose happy(ier). Her comment (rant) yesterday about the importance of patient access–and how Darzalex should be available to all myeloma patients was spot on.
More tomorrow. Feel good and keep smiling! Pat

Friday, November 20, 2015

Dex, dex, dex and so on.

Chemo Tuesday. Then here is how it goes. Insomnia Tuesday night. Wired all day Weds, super productive at work. Tired but awake Weds night. Thursday tired as fuck, go to bed at 6:30. Friday wake up in horrible mood, roid rage at it's peak. Tomorrow (Saturday) all better. Broken record. Every two weeks.

I'm running out of things to say. If anyone wants to write a little something about their myeloma/cancer journey, let me know and I'll share it here. A little venting, a little joking, and so on can be quite cathartic.

Tuesday, November 17, 2015

Cycle 14 done

Wrapped up another cycle today. Later this week, it's 24 hour urine and 5 tubes of blood. Then we see results. Then we repeat. We're talking myeloma, so this is a perfectly acceptable routine.

Wednesday, November 11, 2015

Cluster f#*k, the day's only half over

I work full time.  I have been back to full time for probably two years now. I take pride in my job and I take  much pride in how I've managed to kick ass at work, while managing my myeloma. Tiger blood. Meow.

I get to work at 7 AM. It was 46 degrees here in LA this morning. I couldn't even get Gracie to go for a walk. I work for the Port of Long Beach, in the administrative offices. I'm a planner. We're in an interim admin building, waiting for a new building. For some reason, the powers that be decided that our interim building should be 10 miles away from the actual port. Silly really. The only good thing is that the interim building is about 5 minutes from my house. The commute is awesome.

This morning I had a meeting at the port at 8. Which meant I showed up to my office at 7, sent some emails, got prepared for the meeting and left the building at 7:30 to get to the meeting on time. A big part of my job is managing the relocation of oil wells and pipelines to get them out of the way of a new bridge being built. The oil relocation work has been going on for about 3 years and has cost over $200 million. Recently the bridge contractor has been damaging oil wells, which can have serious safety ramifications.  So the meeting today was for me to bring together all the parties to figure out how to prevent the incidents from happening and how to appease the regulatory agencies that oversee the wells. This part of my job I love and it keeps me fired up. Note there are parts of my job that I loathe and wish I could hand off to someone else. The meeting lasted a couple of hours. It was useful and productive.

I then drove the 30 minutes back to the office. Then I had to get back into my car and drive over to Dr Phan's office for my blood draw. Recall, we can't use my left arm for draws or even blood pressure given I have the no longer working fistula, which is there in case I ever needed dialysis. The veins in my right arm don't work any more. They've been beat up too much. The lab can't access my port. So I go to the doctor, the nurse draws my blood, I carry my blood to lab and that's the process. I should have done the blood draw last Friday. But I just didn't feel like it. Giving blood every two weeks can be annoying. So I went in today. But the nurse who does my draw isn't in this week. I had to walk a new nurse through the process. It's fairly simple. But they didn't have vials at the office. So I had to go to the lab, pick up the vials, then go back to Phan's, then carry the blood back to the lab. Phan's office was super busy, so it took a little while to get my blood drawn. And then at the lab, even though I was just dropping off, I had to sit and wait my turn. Annoying. It also hit me that I am a bit entitled. Not because I am a white male, but more because I have cancer. Fuck waiting, fuck systems. I expect things to work the way I want them. And gosh darn it, I deserve it. I have cancer. I have to remind myself that everyone has their own story and to remain patient.  Be a patient patient I tell myself.

Now I'm back at the office. I have a couple of meetings and some emails to send before calling it a day. I'm taking the rest of the week off. Why? Because I want to. I want to be able to go for a bike ride, have a beer, take a nap. Matt time essentially. Some might ask, why not take a day off when I've got the post chemo fatigue. I thought about that. But I'd rather feel good on my ditch day. I've figured out how to muddle through a day when I'm tired. If I took a tired day off, I'd just lie around and watch tv and sleep. Why waste a nice day off on that.

Friday, November 6, 2015

Shit, I Was Supposed To Have Learned Something From Having Cancer, Wasn’t I?

From the funny, satirical and right on The Onion....

Cancer lessons

Medical Cannabis

More and more research is showing medical cannabis has tremendous value for cancer patients as well as other ailments. It's a tricky subject though. There's still a bit of a stigma about it. I work, so I feel like I have to be careful about what I say or promote...even if it is for health reasons. The link below is an interview with an ex NFL player, Kyle Turley, who has started an organization called Gridiron Cannabis to help players deal with the lingering effects of constant head trauma. Here's a link to an interview with Turley. He's not messing around. Check it out.

Kyle Turley interview on medical cannibas

Thursday, November 5, 2015

Jacksonville man is learning to live, after accepting he was dying

Nice story about a man young who is living life, following his cancer diagnosis.

After years of coming to terms with dying, Todd Blake, at age 24, has another challenge ahead: Figuring out how now to live.
Figuring out how to spend the next years - possibly decades - healthy and cancer-free.
A year ago, he was dying. He knew there was no cure for the cancer he’d been fighting since just after he moved into his freshman dorm room at the University of Florida.
“I know that it’s inevitable, and I’ve accepted that,” he said in a August 2014 Times-Union article.
So, as the story said, instead of giving in to despair, Blake was doggedly living his life - in fast-forward mode.
He married the girl he met in ninth-grade English at Nease High. He started a foundation to help young adults with cancer. He got a job. He and his wife, Maja, even adopted a puppy, Louie, a friendly rescue dog of uncertain breed. He graduated from UF, after taking online courses, with a 4.0 GPA. He went on national TV to tell his story on “The Today Show.”
All while undergoing hundreds of hours of rigorous cancer treatments, months in hospitals and two bone marrow transplants. Just trying to buy time to live that fast-forward life.
But after he took a new drug to treat his Stage IV Hodgkin’s lymphoma, a scan in May showed absolutely no evidence of cancer in Blake’s body.
A follow-up three months later confirmed that. He was still clear.
He was elated. And he was dazed.
“Trying to adjust to survivorship - I get that now,” Blake said. “It’s so incredibly difficult to just flip a switch and unaccept your imminent death.”
That was his reality, and he’d adjusted to it.
“Getting healthy was my full-time job. I‘m glad that I succeeded in it, but adjusting to life as just another person - it is a little disheartening sometimes. It’s just not as passionate. During [treatment] you’re questioning all these intensely deep, meaningful things about your life. And then now, you know, I’m stuck in traffic.”
Mind you, he’s not complaining. He’s just trying to learn to live with this wonderful new reality.
In the Blakes’ apartment in Ponte Vedra Beach, they laugh as they try to speak over the noise of rambunctious Louie gnawing a big plastic bottle, which he occasionally shakes in his jaws. The young couple now speaks tentatively of starting a family, of buying a house, building a future together.
They can dare to dream now.
“For so long,” Todd Blake said, “I’ve been the guy dying of cancer.”
As he was dying, Todd heard of a new drug from Merck, Keytruda, that was working wonders on Hodgkin’s patients. But he could not get approved for it, he said, because after his most recent transplant it was feared the drug could kill him.
But he was dying anyway, right?
“It was my last chance,” he said.
“None of us knew what was going to happen. There’s no data of any patient in the nation that had been on this drug with my situation. No one had done that.”
It was a risk he was willing to take.
He praises his doctors, at Mayo Clinic and in New York, for pushing for him, for cutting through bureaucracy and procedures to get him the treatment. He’s been on the drug since March, provided free to him by Merck.
“He’ll be on it forever,” Maja Blake said.
Early results have been promising, but the drug has not been around long enough, the couple said, for doctors to make a confident long-term prognosis.
So now the Blakes look hopefully to the future, but with one eye out for a bad scan.
If that happens?
“There’s not going to be another miracle,” Todd Blake said. “It’s like, I’ve exhausted all the options. I know I’m in a good streak right now. I want to enjoy it. You don’t want to get caught up in the routines of life and throw away that excitement - you want to live purposefully. But the hardest about living purposefully is to do it day after day after day.”
After he learned he was no longer dying, Blake quit his part-time job (his employers were understanding) and just savored life.
“Three months of unemployment,” he said. “I surfed, I made lattes. We went on a trip to Norway. We climbed mountains.”
That included a grueling 12-hour hike in melting snow to the Troll’s Tongue, a famous rock ledge that juts out high above a lake in Norway, Maja Blake’s native country. He only had half his lung capacity because of radiation treatments, but the climb was something he had to do, he said, to celebrate being alive.
Though he is in remission, their lives still center on cancer.
“But not in a bad way,” Maja Blake said.
In 2012, he started Live For Today, a foundation to support young adults who are or have been cancer patients. It’s growing, and he wants to see it grow even more.
Maja is a Florida State University grad who works at the Mayo Clinic, where she’s a clinical trials coordinator. Todd just began work as a business development specialist at the new Baptist MD Anderson Cancer Center in Jacksonville.
He feels pressure, he said, to get back the six years that were taken up by cancer. He’d like to go to medical school eventually; he’d been on a premed track at UF when he was diagnosed.
Still, there’s more to life than that.
“And if kids and family are back on the table, that’s the most important thing. That was the thing that I would always throw out in the long-shot prayer: ‘God, if you could cure me, that would be amazing. But being able to get to raise a family … ’ ”
He paused. “I just wanted to have that experience. That’s huge.”

Wednesday, November 4, 2015

Myeloma Cycle 14 Day 1

Yesterday was day 1 of cycle 14 of the current maintenance regimin. Super busy at Dr Phan's office. Lots of new patients. The excitement was a fire drill for the whole building that started while I was waiting in Phan's lobby. Loudest fricking alarm I've ever heard. Must people went outside, even a couple of patients who had already started infusion. A couple of folks stayed inside. Not me. That alarm almost gave me a heart attack. We have these tests every few months at my work.Tries to prepare folks in case there ever was an actual fire. My opinion is that if there is a fire, people's natural inclinations are taking over and it'll be pure chaos.

Once the drill was over, we all went back inside. I talked to Phan. My eyes are super puffy and it looks like I have two black eyes. He attributes it to stress and poor sleep. He might be correct. My sleep is horrible...between having to get up to pee 3 times a night and having way too much going on in my head. Again...chalk it up to the mental challenge of myeloma. We try for normalcy and stress free living, but we also feel like there is a ticking clock in our head. It's a broken record for me. Constantly thinking about what is important for me to live life the right way. But also have to take care of the basics. Work, mortgages, exercise, eating, relationships.  I continue to think about Suleika Jaouads's 100 day road trip with her rescue pup. Sounds awesome!!

May 2 is just a few months away. It will be my 5 year anniversary since my diagnosis. I need to start planning what challenge I'll undertake to commemorate the event. Of course, I'll use it raise funds. A myeloma patient,Stan Wagner, is climbing Mt Kilimanjaro in January to raise funds for the MMRF. Very cool. I'd also like to put something in place that will last for years and years. Some kind of non profit. For what I'm not sure. Suggestions accepted.

That's all I got. Snuggling with Gracie right now. Soon we'll walk. Then I go to work.

Monday, November 2, 2015

Holy Shit, I skipped 53, so it's 53 and 54

Just realized I'm a month ahead because I skipped 53 months. I knew something was wrong with my math. I'm on 54. 

54 is also a linebacker from UCLA for the Vikings. Eric Kendricks. 53 would have been lovable Herbie the Love Bug.


55 Months

That's right, it's been 55 months since my multiple myeloma diagnosis. This week I start cycle 14 of maintenance, which is revlimid, velcade, dex and medrol. Physically I feel like a champ. 

Note that 14 is the number of the 5-2 kick ass Vikings emerging star rookie receiver Stefan Diggs.  But let's stick to 55 and that is Vikings linebacker Anthony Barr, who went to UCLA. 

Sunday, November 1, 2015

Immune System

I'm not complaining because I've been pretty fortunate with my myeloma. But I've got some skin issues popping up again, basically because of my lowered immune system. Annoying! That's what you get for being on non stop chemo for 4 plus years. And that is why myeloma patients have to be very careful about avoiding infection.

On the bright side, we saw Berenson on Friday and everything is good. Keep on the same path. My iron had been low, but it's back up to normal. I asked Dr B his thoughts on the recent cure talk discussion on allogeneic transplants. He didn't listen to it, but he had some very clear thoughts on the subject. No, no, no. That's the summary of his thoughts. This is what makes myeloma interesting and challenging. No standard treatment and no consensus on treatment methods.

Yesterday was Saturday, which means I had good bonding time with Gracie.

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 benad...