Tuesday, September 20, 2016

I Won't Apologize for Having Fun While Chronically Ill

As I prepare to wind down on my career so I can enjoy life and take care of my health the way I should be, I find this story to be quite appropriate and accurate.


Saturday, September 3, 2016


3.01 is my latest creatinine number. It's a measure of kidney health and function. The lower the number the better the kidneys are, meaning the myeloma is under control. 3.01 is easily the lowest my creatinine has been since I was diagnosed. This trounces the previous best by 8%. So the myeloma is calm. My stress over recent changes could be pointless.  Good news and a reminder to stay calm and listen to Berenson.  

Wednesday, August 31, 2016

Teddy Bridgewater, Neuropathy, and What's Next

I'm wrapping up a Tuesday. Days and weeks and months fly by. I don't like it at all. Nor do I like green eggs and ham. I started my latest cycle of maintenance today. Revlimid, velcade, dex and medrol. Dr Berenson's mix. For some folks, my regimen is their treatment. But for me, it is maintenance. We're not looking at this mix to bring the myeloma down. Rather, we're using the mix to either keep it stable or slow the progression. For the past two years, it has done a superb job of keeping things stable. This is longer than we expected.  Since perhaps April of this year, my numbers have been creeping up. We look at protein in urine, paraprotein (the nasty myeloma created protein) in urine, kappa light chains and creatinine. I do not have a m spike, a common myeloma marker. So these four listed metrics give us a sense of what the myeloma is doing. Oh, and of course, we go by how I feel.

The numbers aren't skyrocketing, but they are inching up. My maintenance is no longer doing exactly what it aims to do. But don't get me wrong, it's working but not as efficiently as before. And that's how it is with myeloma. It eventually becomes refactory, basically meaning the myeloma morphs and becomes immune to whatever drug you might be taking, Very common for this to happen in myeloma. This is the incurable part of it. Us myeloma patients are fortunate that in the past 3 years or so, we've had several new drugs in the chamber ready to blast the myeloma. I haven't used any of these new drugs. Doctors Phan and Berenson have been reminding me of this fact in recent visits. In my mind, they are preparing me for a change. And if I am being frank, at my past 2-3 visits with Berenson I was absolutely expecting him to say it's time to change. But he hasn't said it yet. He's happy with how I'm doing. He's the expert. My kidney function (creatinine) is decent, meaning the myeloma is under control. I  feel ok, even climbing 10,000 foot Mt Baldy two weeks ago and 14,000 Mt Bierstadt in Colorado two months ago. Sure they totally kicked my ass, but I conquered them. This month, my proteins went down (good) while light chains went up (not good). Kind of a mixed bag. If you ask me, the regimen change is coming. But we want to sap every ounce of benefit (with time included as a benefit) from my maintenance as possible.

It's kind of an odd position. I know change is coming. Lots of questions though. When is it happening? Next month, next year, who knows. What drug will I do and what does that treatment schedule look like? Berenson has mentioned Daratumamab (more easily known as Darzalex) as the next drug. But Leslie recently asked the doc if we should have a forward looking plan. Not yet said the doctor. I guess we cross that bridge when we get to it.

Since my diagnosis five years ago, I've gotten decent at recognizing changes in my body and how/what I feel. There are a few changes that have popped up in 2016. Let's start from top:
- I've never had neuropathy, which can be painful and quality of life impacting. I take 600 mg daily of Alpha Lipoic Acid which is supposed to help. It has helped. But of late, I've noticed my hands very easily get numb. Not painful, but a tingling, I can't feel my hands kind of numb. It happens when my hands are not aimed perfectly straight from my wrists. Any angle or pressure on the hands creates the numbness. It goes away after a while, but it's becoming more pronounced. Dr Phan today suggested switching my velcade from infusion to sub q in the belly. This is supposed to help with neuropathy. We don't want the nerve damage that leads to neuropathy to become permanent. Today I stuck with infusion, but in two weeks, on day 15, I'll likely switch to the sub q and see if that helps.
-If I don't sleep in a perfect straight line, I now get various body pains. Curled up, legs bent will lead to pain. I can walk and shake it off, but it takes a few minute. I have the total old man walk. In fact, even if I sit at my desk at work or sit in a car for too long, when I stand I have aches. My legs get the brunt of pain. Ankles, feet, knees and hips. My bones are fine, we know this, It's the joints and muscles. When I think about camping out on Kilimanjaro and sitting on a plane for 19 hours, I already know that I'm going to have pain. Hello tylenol,
-For a while now, I've had fluctuating hemoglobin counts. Typically, when I'd get low, I get a procrit shot 2 or 3 weeks in a row and the counts would bounce up to near normal, with normalcy lasting 2 or 3 months. My counts don't bounce up as much any more. Procrit is becoming more of a regular weekly thing. It's administered by shot in the belly. I have not needed a transfusion in years, so the procrit is keeping me at least close to normal. Also note that I take a blood pressure medicine, not for blood pressure but to help with blood flow in the damaged kidneys and mending scar tissue. This leaves me with low blood pressure and when combined with low blood counts, I am prone to dizziness if I stand  up too quickly. I haven't passed out yet. At elevation though, this certainly adds to the challenge. Climbing mountains equals elevation. Our guides and doctor on team will watch me and the other patients very closely. We're taking our time getting up the mountain to help with altitude aclimation.
-Also with the low blood count, I get generally tired more quickly. Naps on my days off are the norm.  When I first started feeling sick, pre-diagnosis, I could fall sleep anywhere at any time. Even standing, leaning against a wall. I'm not there now, but I can crank out an hour nap pretty easily. Work at times can be more of a drag, what with the tired and all. When my myeloma numbers were at their best, I'd have a yucky chemo week followed by a week of feeling great. Nowadays, I have yucky chemo week followed by a week of feeling meh, so-so. This is frustrating and adds to the mental/emotional challenge. A tired body leads to tired mind, leads to a feeling of being over it.

Don't get me wrong. I'm doing good. I'm semi-lasered focused on Kilimanjaro. Very very excited for this. I'm ready now and will be ready in a few months.

If you know me, it's clear that I am lifelong almost obsessed Minnesota Vikings fan. It's been a bit of a tortured 54 years for me and the team. 1969, 1975, 1987, 1989, 2009, 2015. All were years with great hope and potential, and gut punching endings. We're close to the start of the 2016 season. The Vikings have been looking great. Expectations are high. Talk is they are super bowl contenders, and it hasn't just been me talking. Real people have been saying this. This past weekend I ordered my 2016 Vikings cap. I changed my work lanyard to the Vikings edition. I've been flapping my guns about how this is the year. Today I was wrapping things up at work getting ready to go to chemo when word (texts) came that Teddy Bridgewater, the team leader, quarterback and all around great guy, blew his knee out and will miss the entire season. Vikings fans and players and commentators on social media have been expressing heartbreak and concern. My expectations have been deflated.

Myeloma is a mental challenge, more so mental than physical at times. I keep myself positive by focusing on other things; Kilimanjaro, my upcoming road trip with Leslie and Gracie, the Vikings, my 55th birthday which is around the corner and anticipated Vegas trip, my brother is coming out in November for his birthday and sports spectating. This Vikings setback chips in to my focus. Might sound silly. A football team that I have no control over. But they're a diversion. I've been following them since the day I was born, which was two weeks after the very first game in franchise history. Kilmanjaro is another positive and another diversion and a chance to show myself I'm not done yet, while also raising money to help find a cure for myeloma. I've conquered a couple of peaks in my training. I am absolutely confident that I'll reach the summit. There are 6 patients on the Kili team, so our guides gear the climb for us to succeed. But, I know it'll be no easy feat. I'm slow, I hurt and I'm low on blood Yes, I'm doing it, but I am constantly reminded that I am no longer a spring chicken. I used to crank up hills and climbs. Now, not so much.

Tonight is an insomnia night from my dex. But I sure as hell am getting up and at em early tomorrow to go to gym. Lift some weights to keep my bones strong. Do some stairmaster to help my cardio and leg strength. I'm sticking to my program. Then I go to work. Not as enthusiastically as I could be, but I'll be there. Next week va-freaking-cation.

I really am pondering various What's Next questions. When do I switch drugs? When do I decide that I'm not spending any more time or energy at work? When do I downsize and simplify so I solely focus on my health and on leading a high quality life. Right now, it's a bit a drudge and routine, with time obnoxiously flying by. I've got February 2017 (Kilimanjaro) circled in my brain as the date for "what next" becoming "here we go, let's do it"

I know I haven't written a long, perhaps overly personal post in a while. I haven't been sharing or in a chatting about myeloma mood. Seems pointless in some respects. Other patients get this and experience this and understand. There is nothing to report, but that doesn't mean nothing is going on. Hard to explain and describe. The patient community is strong and important. We support and empathize with each other. It can be spoken or can be simply known. A head nod or "what up" between two patients means a lot. Five plus years folks. I try to give back to the myeloma and cancer community. I try to keep myself positive and in beast mode. I try to look forward and not backwards and not beat myself up over the various paths I have chosen over the years. Here I am, like it or not. I am constantly working on my self confidence and acceptance and ability to power forward and improve. I'm getting better at giving myself pep talks. Throwing all this out there in this post is a bit cathartic and a bit of a motivational exercise for myself. But definitely don't worry folks, I'm good.

Monday, August 15, 2016


I'm always amazed by people's sacrifices and unselfishness when it comes to do things for a good cause. Eric Gelber is one such person. He takes on some crazy challenges to raise funds for the MMRF. He has raised hundreds of thousands for the MMRF over the years. From Sept 16 to the 18th, he will be running 200 miles in Central Park in NY with the goal of raising $250,000.  Here's a short video of Eric discussing his journey and why he does what he does.


Mt Baldy

Mt Baldy is a 10,000 foot high peak just an hour from the heart of Los Angeles. I hiked it this past Saturday with a buddy and it kicked my ass. I'm thinking it was tougher than the recent hike up Mt Bierstadt with my MMRF team.  Anyhow, it's one more notch in the training belt all leading up to Kilimanjaro in Feb.

Wednesday, August 3, 2016

5 Years, 3 months and 1 day

August 2 came and went. It marked 5 years and 3 months since my diagnosis. Median survival is 5 years. I'm cruising along.

West Coast Conference on Work & Cancer

If you work and have cancer, you may be facing challenges beyond your health issues. On October 15 in Los Angeles, the Cancer and Careers organization that may be for you. They are holding an all day, free conference to address work related topics and issues related to cancer. Below is the link:

West Coast Conference on Work & Cancer

Monday, July 25, 2016

12 Things Only a Survivor Can Tell You About Cancer

Interesting and fairly accurate short read....


Moving Mountains for Multiple Myeloma

Moving Mountains for Multiple Myeloma, (MM4MM), is a collaboration between CURE Media Group, Takeda Oncology and the Multiple Myeloma Research Foundation (MMRF) to raise awareness and funds for myeloma research.

Patients, caregivers, myeloma doctors and nurses and myeloma loved ones take on challenging mountains – Mount Kilimanjaro, the Grand Canyon and Peru’s Machu Picchu – to demonstrate that the advancements being made in recent years, funded and spearheaded by the MMRF, are helping patients live longer with a higher quality of life than ever before.

In January 2016, a team of 15 MMRF supporters, which included four myeloma patients and a myeloma doctor, climbed Mount Kilimanjaro, the highest free standing mountain in the world. This team raised close to $250,000, with all proceeds going to the MMRF to accelerate research for next generation treatments.

On May 12, 2016, a team of 13 hikers took on the challenging Bright Angel Trail in the Southern Rim of the Grand Canyon. Three myeloma patients, a nurse who treats myeloma patients, caregivers and others who are directly connected to myeloma made up the team.

Beginning August 9, 2016, a team of 22 will begin their journey to Peru’s incredible Machu Picchu, via the Inca Trail. This trek will include four myeloma patients, a myeloma doctor, and four myeloma nurses, in addition to loved ones who climb to honor a patient who is living or who has lost their battle with this difficult disease.

Multiple myeloma is an incurable cancer of the blood that carries only a 46.6 percent chance of survival beyond five years, according to the National Cancer Institute. While great progress has been made in recent years to develop novel treatments, continued research funding is needed to get to the ultimate goal: a cure.

“There is nothing more powerful than working together with multiple myeloma patients, doctors and nurses, caregivers and partners like Takeda Oncology and CURE toward a common goal,” says Alicia O’Neill, a climber for the MM4MM program and an MMRF executive. “Pushing beyond perceived limits, working together with our dedicated partners, moving into action to demonstrate — through our physical feats — that we can be a source of funding and of inspiration is at the core of why we are climbing.”

When those touched by myeloma see patients taking on these incredible feats, we hope that they are inspired. While not every patient can dream of summiting the 19,341-foot peak in Africa, we hope our efforts and accomplishments serve as inspiration that we are stronger than we know and can be a positive part of the work that is being done to extend lives as we get closer to a cure.

Kilimanjaro climber and multiple myeloma patient Bod Dickey, of Shell Beach, California, says, “For me, Mount Kilimanjaro was validation that multiple myeloma is not the end. The climb illustrates to patients and caregivers that multiple myeloma offers us an opportunity, if not a requirement, to press harder.”

Takeda Oncology and CURE are proud supporters of the Moving Mountains for Multiple Myeloma Program.

Here is a video of the recent Grand Canyon hike. So powerful and moving.

Monday, July 18, 2016

Does Incurable Mean Terminal?

Hell if I know. I read the below article in the LA Times today. It reminded me of how when I was diagnosed, so many people and loved ones visited me and sent their prayers and wishes. I think we all thought, and that includes me, that I wasn't going to be around long. Looking back on that first year, it's quite surreal. So much I don't remember. Recently friends mentioned coming to see me at my house. I have no memory of that.

Now five years later I'm still kicking. As I mentioned, the Colorado training with my Kilimanjaro team was truly life affirming and life changing. Been thinking a lot about how I use the affirmation and change going forward. I'm not sure.

Anyhow, here's a short op-ed to read. http://www.latimes.com/opinion/op-ed/la-oe-welsh-cancer-immunotherapy-20160717-snap-story.html

Thursday, July 14, 2016

27 heartwarming pics of a man taking his dog on a farewell trip

Courtesy of upworthy.com:
Robert adopted Bella as a puppy. She's now 9 years old, or about 63 if you're counting in human years. 

In May, a veterinarian told Robert that what he initially thought was a shoulder injury was actually cancer and that it had spread to Bella's lungs. The doctor had to amputate one of Bella's legs and told Robert she had three to six months to live.
That was 14 months ago.

Determined to show Bella the same kind of unconditional love she had shown him throughout her life, Robert hit the road to give her the farewell tour of her doggie dreams.
As for Bella, he says, "She teaches me lessons every day, and I am so blessed to spend my time with her."


Monday, July 11, 2016

Mt Bierstadt conquered. Next up...Kilimanjaro

Perhaps conquered is too strong a word. Completed. Survived. Did it.

I'm back home from a quick trip to Colorado to meet my Kilimanjaro team and to train for Kili by hiking a 14er peak, Mt Bierstadt which stands at 14,060 feet. 16 people all instantly connected by a common goal. Team members are from across the country. I miss them already.

Including me there are 6 patients on the team. Terry from Alaska. Nancy from Sacramento. April from New York. Gary from South Carolina. Mark from Seattle. I shared a room with Mitch from Cincinnati who is climbing for his dad who has myeloma.

I arrived in Colorado Friday afternoon. Friday night I couldn't sleep. I was worried if I'd be able to complete the hike. I didn't know how I'd react to the altitude, I wondered if I was doing the right thing. Yes I'd been training. But I had chemo 3 days earlier, I'm getting older and I am generally always low on blood, which as we know is crucial for moving oxygen through the body.

Saturday we ate breakfast and went to the trail head. The hike started at 8 AM. The rocky peak of Bierstadt looked a million miles away.  We reached the summit as a team around 1:30. 6 miles of climbing. I made it. Arriving at the peak, the emotions flowed from all of the patients. We've gone through a lot. I was a crying mess.

I felt pretty good at the peak. No problems with the altitude, That's a very good thing. Kilimanjaro is 19,000 feet high. That's Bierstadt plus 5,000 feet. My legs will a little sore but I figured the downhill return hike would be a piece of cake. Nope. I was in the last group to finish, arriving back at the trail head at 6. 12 miles and 10 hours of hiking. I was exhausted. My legs were jelly. My feet were aching. But it was done and I did it. Wow. Sometimes I mentally block out that I am old and have cancer, and for a moment I was disappointed with myself that I got so beat up by the mountain. That's silly sure, but it's still a thought that crossed my mind.

 Stepping back though, I am super happy and extremely proud of myself. This is definitely a life altering event. Whereas before the hike, I had a bit of worry about going to Kilimanjaro, now I am nothing but excited. I know what training I need to do and I know I can do it. Guaranteed.

Sunday the team/new family ate breakfast together, exchanged phone numbers and headed back to our homes. On to Kilimanjaro. Thanks everyone for the support and motivation.

Thursday, July 7, 2016

Team Tracking

Moving Mountains for Multiple Myeloma and the MMRF have created a site to track our training progress this weekend.  Follow this link over the weekend if you want to see how we're doing, along with pictures of Saturday's 14,000 climb.


Wednesday, July 6, 2016

Mt Bierstadt, CO

Kilimanjaro training kicks up a notch this weekend. The team is traveling to Colorado to climb Mt Bierstadt, a 14,000 peak.  I feel like I'm in good shape. The two things have me an itsy bitsy worried are that I just started a new cycle of chemo yesterday. This means achy and sore muscles, without climbing a mountain. And, while my hemoglobin is ok and I don't need procrit this week, it's still a little low...hovering around 10. Normal is 13-15.

But I'm doing this! It's a good test. Yikes. No problem! Yikes.

And if you want to contribute to my Kilimanjaro climb/fund raiser, simply click on this link:

Matt Climbs Kilimanjaro to Raise Funds for the Multiple Myeloma Research Foundation

Friday, July 1, 2016

Monthly Berenson Visit

Everything good. Myeloma stable.  Stay the course. Pre-visit breakfast at Factor's deli on Pico in West LA. 

Wednesday, June 29, 2016

Kidney Power

My biggest fear since diagnosis has been my kidneys failing. Early on we were on the brink of failure. If you were to go simply by creatinine levels, they failed a long time ago. In fact I had a kidney doctor who, without consulting me, scheduled me for dialysis.  I said no to that and changed kidney doctors.  I have never been symptomatic of kidney failure. No swelling, no nausea, I've always been able to pee. So I have never done dialysis. My fears haven't been realized. I'm all for facing your fears. But this is one fear I want nothing to do with. Dialysis? #FTS

Since we have the myeloma under control, the creatinine dropped from the 8s to mid 3s. For the past two years, I have hovered in the 3s. When I was sick a few months back it bounced to over 4 and that gave us some concern that the myeloma was gaining strength. But I got healthy and the creatinine went back down. For my past two lab results, I've had 3.22 and 3.23.  Record lows for me.

Also recently, my current kidney doctor gave me some flexibility on the food I can eat. I had been on a fairly strict renal diet, i.e. low potassium and low phosphorus.  Now I can cheat a little. I still don't go crazy, but the flexibility is nice. This is especially true since I've cut out beef, pork and chicken. I need plant based sources of protein, and these often have a bunch of phosphorus or potassium.

My most recent labs are significant, because we can see the results of my expanded diet. And all is well. My potassium and phosphorus remain low. My kidneys are in their own kind of beast mode.

Thursday, June 23, 2016

The Original Beast Mode

I talk about going into beast mode for my Kilimanjaro training. Beast mode is a mind set. It's best described by the originator of beast mode, Marshawn Lynch, recently retired NFL running back. Follow the below link and watch the video. Enjoy.

Over and over and over

Wednesday, June 22, 2016

Wilbur Ties the Knot

I'm pretty sure I've mentioned Wilbur before. He's a friend's rescue Basset. The friend is John DiNunzio, who is a bike planning extraordinaire located on the Central Coast of California. John sent me this picture of Wilbur's recent wedding, marrying Jazz. Thought I'd share.

Lowered Immune System Effects

My treatment and the myeloma mean I am typically immune compromised. During my week off, I'm usually ok. But for a week or so after treatment, my immune system is low and I need to be cautious and stay away from environments that may have lots of germs.

Caution will only get me so far. My body has viral crap that is normally dormant in my system. Wouldn't even know I have the virus. But the low immunity gives the crap a chance to come out of hibernation. For me, it's viral warts. Over the past couple of years, they've popped up in strange places. Toes, private parts, etc. Yesterday I noticed them coming in on a finger. This is new. This is also very maddening. My fricking finger? Come on, give me a break! I need to make an appointment with dermatologist. Until then, no shaking hands. That I can live with. But no high fives. That sucks.

We're constantly searching for foods and supplements that will boost my immunity. It's a topic that cancer docs don't really get into. So I and we are left to our own devices. If I discover something, they only thing I can get from the doctor is if whatever I discover impacts the kidneys or how a supplement interacts with my cancer drugs.

Tuesday, June 21, 2016

The Mysteries of Myeloma

I like to think that after 5 years I have this myeloma thing figured out. I understand my treatment and how it's going to make me feel. I know what to look for in my labs. And I think I generally can gauge how I am doing by a variety pack of symptoms. Then there are days like today. I have chemo later this afternoon. This past weekend  I got in two good hikes. Yesterday  I felt good, no lingering achiness from the hikes. This morning I should feel great. But my body and legs ache again and I'm a little worn out. WTF?  But that's the thing. We never really know how we might feel day to day and what is the cause. I'm basically on cruise control with treatment. I'm healthy enough to climb a mountain. But you can never relax and not think about myeloma. I've asked other patients who have had the disease for a decade or longer if they are ever able to go a day without thinking about myeloma. And the answer is no. It's always hanging out in their thoughts. Freaking annoying. Today's aches and pains are unexplainable. It's just one of those things. I'll go to the gym before chemo and try to work things out. A little stretching, movement and exercise should help.

Support my Mt Kilimanjaro Climb to Raise Money for Multiple Myeloma Research Foundation

Sunday, June 19, 2016

Training in Palos Verde

Heat and hills today. Kicked my ass. But I did it. One step at a time. 

Friday, June 17, 2016

Beast Mode for Kilimanjaro

It's an off week from chemo. It's my break between days 1 and 15, if you're interested in schedule. My creatinine this week was 3.22. Tied for the lowest it has been since I was diagnosed. That's fantastic, means the myeloma is under control. Nice results as time passes and my 5 year cancerversary is distant in the rear window.

As much as possible, I've attempted to work out and stay in shape this whole time, even during chemo weeks I try to get some semblance of a work out.  Of late and necessarily, my workouts have been kicked up a notch. Cardio and leg stuff specifically is the focus. And here's where I can tell I am getting older and I have cancer. It's a bear. Gone are the days I can get in shape lickity split. Last weekend was particularly difficult. My bounce back from chemo usually occurs 3-4 days after treatment. I do chemo on Tuesdays. But last weekend, I was  achy and tired the whole time. I tried to do my Kilimanjaro training, but it was super tough. I felt a bit defeated and was wondering why I thought I could do this.

But! This week is totally different. I can tell I'm finally getting stronger and my cardiovascular capabilities are increasing. Now I'm pretty confident I can do this. In 3 weeks, the Kilimanjaro team is going to Colorado for team building and training hikes at high elevation. Kilimanjaro is 19,000 feet. While in Colorado we'll get up to about 14,000 feet. This will definitely be a test for me. I'm always low on blood..ergo less oxygen to keep the muscles moving.  I need to stay in beast mode.

Speaking of Kilimanjaro, I've reached $5,000 in fund raising. Half way to my goal. If you're interested in learning about why I am climbing or if you want to make a donation, simply go to:
Matt's Mt Kilimanjaro Climb for the Multiple Myeloma Research Foundation

Sunday, June 12, 2016

Thursday, June 2, 2016

5 years 1 month

Now it gets complicated. What image do I use for 5 years and 1 month since diagnosis? I'll tell you what, this myeloma is the gift that keeps giving. Physically I'm pretty good. I'm waiting for this month's lab results. Tomorrow is Berenson. Next week, we start another cycle of maintenance. Kilimanjaro training is in full force. Beast Mode.  But I'm generally tired, my gut is always a little funky from all the different meds I take. My mood is pretty good, although I can be a bit snappy lately.  I realized that while I dream of the day I don't have to work and can take daily naps, I need a plan. What's my hobby? What's my passion? How will I spend my time? That's my goal this weekend, to put that vision together.

Wednesday, June 1, 2016

Port Pillows

For those with ports, we know that it makes life easier by allowing us to not be constantly poked. For me the port is vital. The veins in my right arm don't work any more and my left arm is off limits, given I have the (no longer functioning) fistula, put in by a previous kidney doctor in case I needed dialysis. Knock on wood, no dialysis. But having a port also can make normal things awkward and challenging. This is a story about a woman who is helping with one of those awkward issues.


Monday, May 30, 2016

Cure Talk on Relapsed Myeloma

Tuesday May 31 at 2 pm west coast time/5 pm east coast time, there is a Cure Talk Discussion about relapsed myeloma:
Recent introduction of new therapies has significantly improved outcomes for patients diagnosed with multiple myeloma. However, cures remain rare in myeloma and most people may eventually relapse. If we can better understand how and why myeloma grows back, there is hope that relapse can be prevented and thereby eventually improve the long-term outlook for myeloma patients. The myeloma panel is talking to Dr. William Matsui of Johns Hopkins University School of Medicine on why relapses occur after several years of remission and how they can be prevented.

The link to join this discussion is: http://www.curetalks.com/event/rsvp/Preventing-Relapse-in-Multiple-Myeloma/252/?upcoming=yes

Sunday, May 29, 2016


5 plus years. Wow. Non stop chemo.  5 years with question mark over my head. Talk about physical and mental challenge. Crazy. 

Saturday, May 28, 2016

One size does not fit all

Myeloma is a very unique cancer and manifests itself differently in most people. As such treatment is tricky and there is no normal and no right way vs wrong way.  Having a myeloma specialist on your team is one definite rule. 

And Kiliminjaro training begins...

Wednesday, May 25, 2016

Latest Post from Bill McHugh

Bill is a myeloma friend. He's doing well and has an awesome attitude about living with the disease. Last year he climbed the Empire State Building stairs to raise funds for the MMRF. He doesn't necessarily post a lot on his blog but when he does, it's always great stuff. I can relate to his approach and attitude.

His latest is worth reading. Take a look:
Stop Being Selfish

Thursday, May 19, 2016

Kilimanjaro..Time to Get Serious

One of the challenges with myeloma is that I'm almost always walking around with a lowered immune system. I need to be extra careful to stay away from people who are sick and other germs sources. Admittedly I can get a bit lackadaisical with this. But when I'm hit with two months of being sick and worried about pneumonia, as I was earlier this year, I get serious again. Being immune compromised also means I am susceptible to the activation of normally dormant viruses in my body. Two years I had a surgery to remove viral warts that were out of control. By far the recovery from this surgery was the most painful thing I have ever experienced. Ever!

This week I had a repeat of the surgery. I've been dreading it. The first time I had this surgery I was out of commission for three weeks. I guess we caught them early this time, because at 3 days after surgery, I'm feeling pretty darn good. It's been a totally different experience.

I've slowly been starting training for Kilimanjaro. Cardio, walks, hikes. But I wasn't engaged 100% in the training because I knew I had the surgery and recovery ahead of me. But now that recovery is almost behind me, training starts in earnest next week.  Beast mode. We've got a team training hike in Colorado in July. I'm looking forward to meeting my fellow trekkers. One of the team members lives here in Long Beach and we met a couple of weeks ago and did some hills in nearby Signal Hill. All the other team members are spread out across the country. There are 15 of us. 6 are patients. I'm almost halfway to my fund raising goal of $10,000. I'd like to blow past that number, which I think is totally doable.

This week is also my off week from chemo. Last week was day 1 of cycle 20 of maintenance. Last week I also had to make a visit to the dermatologist to freeze off a bunch of pre-cancerous spots on my face. Sensitivity to sun and susceptibility to skin cancer is a side effect of my treatment. I always need a hat when I'm outside and I'm thinking I need to get stylish with my hat selection. Embrace the lid.

This past week I was promoted at work. I'm now the manager of land use planning at the Port of Long Beach. I've said it before, I'm proud of my success at work over the past five years (since diagnosis). It's a big deal. I take pride in my kicking ass. Having said this, work can be a challenge, especially during treatment week, when my energy and mood are roller coastering. And I'm still needing greater meaning in my existence. In my interview I was asked about my presentation style and if I chose it or did it choose me. Interesting question. My answer was a) conversational and b) it chose me. And I realized that is how I feel about my cancer and life going forward. I sure didn't choose it, but I have to work with what has been dealt me. I must make some plans and define goals to keep moving forward. Again...beast mode.

And that's it. Nap time.

Saturday, May 14, 2016

Cure Talk May 19

Cancer drugs cost more than $100,000 per year and continue to increase. Medicare has proposed major changes to Medicare Part B in an attempt to slow the explosion in healthcare expenditures. In addition, a recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, its treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year). The results of ICER’s research may have serious implications as their recommendations are trusted and used by payers and may be influencing CMS (Center for Medicare and Medicaid Services) decision-making. Dr. Rajkumar of Mayo Clinic is on CureTalks to help educate doctors, patients, and the general public on what these programs are and how they might affect the doctor patient relationship.