Wednesday, October 28, 2015

Social Security Disability

In the back of my mind, I think that there will be a time where I can't work, that it's too difficult to work and manage my health.  So as I listened to recent federal budget discussions, I heard rumblings that social security disability might be eliminated. Multiple myeloma is on the list of diseases that qualify for SSD. Hearing it could eliminated put a bit of a fright in me. Luckily SSD wasn't cut. Money Magazine provides this overview of changes to SSD:

Funding Social Security Disability
The Social Security Disability fund is scheduled to run out of money in about a year. The draft bill will permit Social Security to pay all its disability claims until 2022 by shifting payroll tax revenue away from the larger retirement fund and into this program. Without this reallocation, those on disability would have seen 20% cuts when the funds were exhausted.
Right now, employees and employers each pay a 6.2% payroll tax (the wage ceiling is $118,500 this year) or a total of 12.4% into the agency’s trust fund. Of this, 1.8 percentage points is allocated to the disability fund. Under the bill, this allocation would rise in 2016, 2017 and 2018 by roughly half a percentage point to 2.37%.

Tuesday, October 27, 2015

Thursday Cure Talk on Allogeneic Transplants

There is plenty of debate over autologous stem cell transplants in the treatment of myeloma. Autologous means the patient is using their own stem cells for the transplant. Stem cells are harvested, the patient and myeloma is blasted with heavy duty chemo and stem cells are put back. In theory, it's a reset on a patient's system. When I was first diagnosed, I assumed a transplant was in my future. Given the conditions of my kidneys, a transplant would have been risky. The heavy duty chemo is super toxic to the kidneys.

And then I hooked up with Berenson, who is vehemently against transplants. While I did harvest my stem cells (which was a challenge to get any significant number, given the effects of chemo on stem cells), a transplant is off the table for me. I'm firmly in Berenson's camp....for me.  There's no right or wrong though. Each patient chooses a path and jumps in 100%. 

The debate over autologous transplants has yet to be concluded. But now there is a line of thought that allogeneic transplants might be the way to cure myeloma. Allogeneic meaning there is a stem cell donor. While a bit more common in other cancers, it's not common in myeloma patients. As far as I know, they're far too risky. Nonetheless, there is a school of thought that considers it an option.

With that introduction, there is a Cure Talk this Thursday on the topic of Allogenic Transplants. The role of allogeneic stem-cell transplantation is evolving in the paradigm of myeloma treatment. Despite its therapeutic potential of a myeloma cure, the use of donor stem cell transplantation is highly debated in the medical field due to the safety risks and rate of relapse. We are talking to Dr. Krishna Komanduri to better understand allogeneic transplants, optimal timing, and how to manage graft-versus-myeloma effect for improved efficacy and safety. The link for the call is below.

Wednesday, October 21, 2015

Myeloma Cure vs Control

Another interesting read.

The Power of Dog

There's no hiding it, I'm on the verge of being a crazy dog person. In fact, I was explaining to my mom and nephew the other day that I get more emotional over animal sadness than just about anything else.

This is a nice story from the New York Times about True Love and the power of dogs.

True Love

Chemo yesterday, back to work today

This is me and a work buddy, Shashank.  Going out in the field is much preferred over sitting at a desk.

Tuesday, October 20, 2015

Must think

It was chemo today. This wraps up another cycle of maintenance. Velcade, revlimid, dex ,rest and repeat. Later this week I do my 24 hour urine collection and give 4 tubes of blood. My monthly labs. I thought about asking Phan if I can skip this month. Frankly I could use a break from carrying around at work a small cooler that contains my pee. I've become a creature of habit. Changes are frowned upon. So as I thought about asking him, I realized that I didn't want to alter my routine. Thus labs it is.

I did ask Dr Phan his thoughts about assisted suicide and the recently passed law in California that allows it. His answer surprised me and led to a whole range of health industry topics. My motivation for asking is that I've been putting some thought into what I do if I got to the point where no treatment was working and my myeloma was worsening. I feel great right now, so I think that makes it a bit easier to think about death. Part of me thinks me having cancer isn't even real. Death smeath. It's 25 years away, at least. That is ages from now. Conversely part of me can't imagine myself without cancer. It's just here, plane and simple.It's part of my character, if you will. That part of me is a bit more pessimistic and thinks that any day could be the day that I start downward. Scary. Either way, I am confident that I need a plan for not having to prolong the inevitable. Note please, I'm absolutely not saying I'd get a head start on dying. But if I saw it coming, I should have an exit strategy. 

Given the above and the fact that know one should have to suffer, I was glad to hear that California approved the assisted suicide law. Phan took a whole different position, of which I won't get into specifics. But let's just say he didn't think the law was necessary. Add in a conversation abut the health industry and I felt like I was allowed behind the curtain.

The past 3 weeks have been whirlwind. I've been busy, traveling, living life. I felt like I was doing what I should be doing given my diagnosis. Two weeks ago we went to a wedding in Palm Springs, a desert resort two hours east of Los Angeles. A mini vacation for us. I immediately followed this with a trip to Boston, which was an amazing experience, Came home on a Weds night and was at chemo the next day. Then I worked for a week. It was a tough week, simply because I felt like the week before I had been free. And then poof, I'm a desk jockey. zzzzzzz.

This past Friday I went to visit my mom in Northern California. She's recovering from hip replacement surgery and could use a hand. I spent 4 days with her. She is doing fantastic. Less than 2 weeks after surgery and she's moving around like a champ. Seriously impressive. She's an amazing mom. I also got to see a nephew and a niece plus a beautiful young great niece and great nephew. I returned home last night and today went to work and the gym and chemo. It's a real slap in the face, coming from 4 days of relaxation and going to never ending days where I have to be on task and focused. I gotta work. I must go the gym. doubt mandatory.

I operate on a monthly calendar, based on my treatment, lab work and doctor visit schedule. Despite this monthly pattern or perhaps because of it, the days and weeks and months and year are passing by much too quickly. I'm towards five years and life is pretty normal. But guess maybe that sucks. I've had this life altering experience. I need to be out there embracing life. I strongly suggest following the link in a recent post that connected to a great story in the New York Times by young cancer survivor Suleika Jaouad. It's the story behind her 100 day road trip. It's brilliant and motivating. Tomorrow is a whole day at work and frankly I am dreading it. Perhaps it's the dex and such that have me thinking this way.

These past weeks have been a whirlwind. It has proved to myself that I can move around and do things despite myeloma and all that goes with it. I'm proud of myself I must say. I survived the whirlwind. I am damn strong. But it's also shown that I need to make moving around and exploring a mainstay, not a rarity. Think Matt

Saturday, October 17, 2015

Suleika Jaouad's 100 Day Project

The latest from a young, thoughtful cancer survivor. I absolutely love the idea of the 100 day project as well as a 100 day road trip. I'm constantly in search of a life affirming challenge as I roll towards five years since my diagnosis. I suggest you take a few minutes to give Suleika's story a read and be prepared to be impressed and inspired. 

Monday, October 12, 2015

Breaking Free From the Cancer Identity

Interesting read from the Huffington Post.  For the first year or so after I was diagnosed, I was worried that cancer would become my identity. It pissed me off. I'm more than just cancer. But here I am a few years later and it kind of is my identity. I can't remember a time when I didn't have cancer. Can't even remember physically what not having cancer felt like. I do think some of that is because of myeloma. It's always there. I suppose I'm ok with it.  Anyways, the link below was written by a cancer survivor who is wrestling with this question.

Breaking Free From the Cancer Identity

Friday, October 9, 2015

54 followed by 54

A week ago it was the 54th month anniversary since my diagnosis. Today is my 54th birthday. Note that today is also Jackson Browne's, John Lennon's, Nick Swardson's (comedian) and Leif Ericson's birthday.

4 plus years ago I wasn't sure I'd make it to 50. It was touch and go. And here I am, surviving and thriving. Pretty good, if I do say so.

Chemo yesterday, so I am flying high on dex today. I'm not working today. So I had an early morning workout, then going to see the Martian in 3d and later going to eat with Leslie and we'll see the Intern. Bam!!  that's how I do it.

Thursday, October 8, 2015

Other Stuff

Flew home last night. Chemo today. I pushed my Tuesday treatment to today, Thursday. I'll get back on my Tuesday routine in two weeks. I'm a creature of habit and routine with my myeloma, so doing chemo on Tuesdays at 2:30 is key.

Everyone at Dr Phan's office got me a card and made carrot cake cupcakes. Super thoughtful. Tomorrow is my 54th birthday. This follows my recent 54th month anniversary since my diagnosis. Lotto time!!!!!

There was a parking lot snafu at the Los Alamitos Medical Center. Took me nearly 40 minutes to get out of the lot. And what the heck is this having to pay for parking at a hospital? Seems wrong to me. That 40 minute wait was long enough for my dex to kick in allowing roid rage to rear it's head. I managed to talk to the parking manager and let fly about a dozen fucks. I surprised myself. He was speechless and probably a bit frightened. But, hey, it's fricking ridiculous that people who are probably feeling less than well have to sit for 40 minutes and then pay for that. And you can guarantee that when I retell this story in a couple of days, the wait will have gone from 40 minutes to over an hour, and I will have been on the verge of throwing up in my car. Embellishment is a privilege of post chemo.

Myeloma Advocacy

Recently I was invited to join some of the leading myeloma advocates in a discussion of the concerns and unmet needs of myeloma patients. I was absolutely honored and humbled this week to join 8 fellow patients and 2 caregivers. Each of the participants has a powerful voice and all are passionate and so so smart. At times I was scratching my head, wondering why I was there.

It was an amazing, dare I say life changing, experience. I saw a couple of old myeloma friends and made some new lifelong friends. The myeloma community is amazing in its strength. I could go on and on. But I'll leave you with this unofficial photo of the group. I'm in the back on the right, partly covered by shadows.

Friday, October 2, 2015

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...