Thursday, December 31, 2015

The day after chemo

I was at work today. Super productive with the dex impacting me full force.  I was out in the field part of the day, checking on progress on a bridge construction project.  Being in the field kicks the ass of sitting in a cubicle. 







Wednesday, December 30, 2015

Day 1 Cycle 16

This photo is of the second to last step of my infusion today. It's the flush of the port at the end of day one of cycle 16 of my latest cycle of maintenance routine. A cycle is a month. Note that there has been countless other regimens over the past nearly five years. So total cycles for all treatments is an unknown number to me. I suppose I could calculate it, but there is no point.



I'm wide awake from the dex. I tried a different sleep aid tonight and it has had zero effect. My mind is spinning widely.

I'm thinking about my brother and sister in law, who have been faced with one family emergency after another. My sister in law's sister in the hospital, struggling against her lifelong diabetes....another horrible disease. My sister in law has lost both her parents over the past 18 months. Truly sad. But my sister in law carries on in a way that I'm not sure a lot of people could do.

My wife has been sick for a few days with some kind of flu. She's finally feeling better. Gracie, my pup, has an odd fear of coughing. So anytime my wife coughs, Gracie freaks out and leaves the room. Then she comes back. Then there is another cough and she leaves again. So all night I am hearing the click clack of Gracie's nails on our faded hardwood floors.

I'm sick of myeloma at this point. Not the myeloma itself. As I said before I'm at a comfort level with it. It's the physical and mental shit that accompanies myeloma that have me angry (an anger fueled by dex). I'm angry that I'm constantly thinking about my financial future. I'm good right now...as long as I am working. But what about later, when working becomes too much of a chore?  I'm most angry at myself, as I think about and regret and re-regret past decisions I've made that I can't get over right now.  I've decided that I'm a horrible decision maker. I need to adopt the George Constanza of Seinfeld approach, where I do the exact opposite of everything I'd normally do. It seemed to work for him.

I visited my mom for Christmas. We went to her neighbor's for Christmas. I really enjoyed it. A diverse and interesting group of people. It reminded me that I need/want to be more interesting. I've carried a fear my whole life of being an uninteresting older person and I think I may be on my way. I'm thinking about getting a new mountain bike and riding again. A friend goes to the nearby trails on weekends and I think I'd like to join him.

Over the next two weeks I have to see my dermatologist. I know that she'll burn a few pre-cancerous spots off my face. I'll also be seeing the ass surgeon soon. About two years ago I had the most miserable experience of my life at his hands. Because of my lowered immune system, I'm prone to warts and skin viruses in unmentionable places. I'll tell you this, there's probably nothing as humiliating as someone staring up your ass, taking notes.

Before I was diagnosed, I had basically zero exposure to cancer. My perception was very black and white. I thought you were either cured in a few months or you died. Boy was I wrong. Myeloma just keeps giving. Mind you, I know I'm fortunate. I'd doing really well. I'm working and living and planning on getting jacked...lean and mean... in 2016. But if I'm being honest, I'm a tinch envious of other cancer patients, who get sick then several months later are well. I don't say this much, but it's a bit unfair. And I feel like an asshole for even expressing these feelings.

I miss my friends. I miss being able to do whatever I want, going wherever I choose...without having to consider my treatment and doctor schedules.  I can't miss treatments. I never achieved complete response or remission. So delayed  treatment would mean the resting myeloma can go nuts. I'm going to meet my friend David Saturday to hang and watch some college bowl games. But in the back of my brain, I already know that after about 3 hours I'll need to get home for a nap. And that a couple of beers will mean I'm exhausted Saturday night.

On the positive front, the Vikings have qualified for the playoffs. I love this year's team. Super Bowl visions occupy about 15% of my awake time every day. The game is in the SF bay area this year. So if the Vikings make it, you know I'm going. Of course writing this has now jinxed the prospects. I'm up for a new job at work. It's something I'm pretty certain I should get. Again though, I shouldn't write or talk about it...lest I jinx the whole thing. I have a host of conspiracy theories about why I might not get it. I can get a decent level of paranoia going on certain things. This is one of those.

This time of year at Dr Phan's office is always busy. With holidays, people try to squeeze in their infusion treatments. The Dr has a fair amount of newer patients. Not all are doing so great....as far as I can tell, but you never know. Sometimes, like today, it kind of trips me out that there I am. Hooked up, getting chemo drugs infused through a port. I ate cheezits and watched a bowl game on my ipad. I used to sleep under a blanket, so I've definitely improved and made progress. But still it's an odd feeling if you really stop and think about what you're doing. I try not to.

Well, it's time I try to get a little sleep. Don't worry about me. I'll be fine. Just unloading my brain. I guess that's why I better find a new therapist...tout de suite, aka double time in French.



Thursday, December 24, 2015

Doctors Update

Saw Berenson yesterday. First visit in two months. I skipped November. Oooh, so bold. All is good. No changes in my numbers.  So Tuesday we start up cycle 16. 
Also saw the kidney doc. First visit in about 5 months. As with Dr B, no changes. I take losarton, a blood pressure medicine, to slow kidney damage progression.  Lately with my low blood count and low blood pressure, I've been getting a little light headed when I stand up too quickly. So Dr Froch gave me the option of cutting out losarton. I thought about it and nope...gonna keep taking it. Changing what works is not something I do. 

Now on my way to see my mom for a quick vist. Happy holidays, Merry Christmas and Happy new year everyone. Be well. And let's all seize 2016 with gusto and a vengence. As my friend Ken says, it's beast mode time in 2016.

Monday, December 21, 2015

Cycle15

I got back most of my monthly lab results today. These are the precursor to my Weds Berenson visit. So far everything looks good. Low on hemoglobin, so I got a Procrit shot this morning. This might explain my tiredness today.  Creatinine, though, is back down to 3.44. I've been focusing on the renal diet, given the number was creeping up. So I'm quite pleased with that result.


Total protein looks good. Now just waiting on the Upep, which is a measure of the paraprotein (bad protein) in the total protein. I'm anticipating this will fine.


No doubt next week will be the start of cycle 16.


Then we're in 2016.

Thursday, December 17, 2015

Artist Lydia Emily faces down death to spread her light

By now, folks should now that I struggle with finding my meaning. It's been my goal since I was diagnosed. Not only do I want to find my meaning, I want to embrace life and live life to the fullest. I'm particularly taken by people who are doing just that. It's inspiring for me. In 2016, we're going to figure this thing out. For now, I want to share the story of an artist who is doing what she loves as she deals with a likely fatal illness. Please give it a read.

http://www.latimes.com/entertainment/great-reads/la-et-cm-c1-lydia-emily-muralist-20151217-story.html

Hot Links

Just wanted to share a few things:


First is a Caregiving 101 article, that addresses the unique issues of being a myeloma caregiver:
http://mymultiplemyeloma.com/fight/caregiving-101/


Next is an article about adding certain spices to your diet, as a anti-cancer move:
http://anticancerclub.com/healthy-mind-and-body/adding-spice-to-your-life-as-an-anti-cancer-move-by-barbara-versaeval-cunnings/


Then we have a link to webinar that I listened to regarding Disability Benefits. It's very informative and worth about a half hour of your time.
https://disabilityrightslegalcenter.org/sites/www.disabilityrightslegalcenter.org/files/2015-12-16%2014.16%20Disability%20Benefits.mp4


Finally, it's a link to an organization that isn't necessarily cancer related, but for an organization that provides a vital service...connecting people with disabilities with a service dog. Canine Companions for Independence.
www.cci.org/



Tuesday, December 15, 2015

False Alarm on the Port

Yesterday I had an appointment at the hospital for a check and repair of my port. Dr Phan wasn't able to get blood return from it a week ago or so. In my mind, I'd go to the hospital, they'd hook some pressurized connection and blow out whatever was clogging it. Instead, they checked me in for same day surgery, as if they were replacing the port. Had to go through the whole surgery rigamarole. That threw me off. We arrived at 7 am. 4 hours later, they wheeled me into the surgery room, hooked up to my port. Lo and behold, perfect blood flow. The thing was working great. "User error" the doctor said. I'm at one with my port, so getting a new one did not sound like something I wanted. Definitely relieved.


Today, we'll use it for real. It's day 15 of cycle 15 of maintenance. 24 hour urine later this week. Berenson next week.


The Leukemia and Lymphoma Society has a program called First Connection. It allows newly diagnosed patients to talk to more experienced patients with the same blood cancer. I went through training to be a first connection volunteer about two months ago. Last night I had my first connection. I spoke with a woman who had recently been diagnosed with myeloma. She had all the same fears and questions that I had when I was diagnosed. I think she was relieved to talk with someone else with the cancer. And for me, it was a nice step towards my personal goal of being relevant and giving back. Win win. On a side note, the LLS provides support for all blood cancers, including myeloma. But they don't have the M in their name. Some say this should change. I'd agree.



Sunday, December 13, 2015

The Beat Goes On

I was in Orlando this past week, just for two days. Kind of a long way to go for one night.  I went for a meeting of a myeloma group that I am a member of. I'm not sure I contribute much, but I definitely learn a lot. I also get to spend time with other patients and caregivers, which doesn't happen a lot. For me the benefits are worth traveling cross country. Two notes: One fellow patient, Yelak, is a 20 year survivor of myeloma. He's about my age, so he obviously was diagnosed at a young age. It definitely seems like myeloma isn't just a cancer for older folks. Anyhow, what was interesting is that even after 20 years of living with the disease, Yelak still talks about having the bubble of unknown hanging over him. He does velcade every week. And he knows that any day, the myeloma could renew it's strength or he could get an infection. Geez, I feel like I'm tired of thinking about myeloma after nearly 5 years. 20 years. But it's nice to know that people are living longer and longer with the cancer. Also of note is the awesome strength of Pat Killingsworth. He's recovering from transplant number 2 in the past few months. Dual transplants is one of several lines of treatment available to patients. Pat hung in there for our meeting, after being in Orlando leading up to this for the American Society of Hematology annul meeting. Pat left Orlando and headed to Iowa to see his transplant doctor. In Iowa Pat had a fever and some gut issues. He's now hospitalized until he can knock out the stomach infection. But how strong must Pat be to have endured a conference, our meetings and a couple of flights. He must have felt horrible but he persevered. He takes his role as advocate quite seriously.

This week I have chemo. Wrapping up the latest cycle of maintenance. Before I can do chemo on Tuesday, I have to have my port checked on Monday. It's clogged. Hopefully, it can get unclogged without much effort. If it can't be cleared, then I might have to get a new port. Fingers crossed I don't. I like my port, I don't want to go through the process of getting a new one.

Lastly I wanted to share the following op-ed from the LA Times. It's written by a woman who was diagnosed with a terminal cancer. I realized that I might be posting a lot of stories related to death lately. Don't worry, I think it's just something that myeloma patients need to get a little comfortable with. Doesn't mean we aren't going to fight. But it does mean, we/I am realistic.

http://www.latimes.com/opinion/op-ed/la-oe-welsh-time-i-have-left-20151213-story.html

Tuesday, December 8, 2015

Power port

I'm on my second port. I've had the current one for quite a while. It's under the skin on my upper chest.  It's great for infusion. Easy.  We can't use my left arm for blood draws or infusion and my right arms veins no longer work. So the port is also used for my bi-weekly blood draws.  Usually a nurse draws my blood and I walk it over to the lab. No nurse was available the other day so Dr Phan was going to do the draw. Takes just a minute. But we couldn't get a blood return. Phan moved the needle around but no luck. The damn thing is clogged. Why? Who knows. It might not have been flushed properly after my last infusion. Possible given the turnover and work load of nurses. But I watch every step and it seemed like it was flushed. Anyhow Monday I have to go to radiology for them to try and unclog it. If it can't be unclogged, then I get a new one. It better clear, I love my port. The lesson here?  Myeloma is always full of suprises. This is a new one for me.


Saturday, December 5, 2015

The Beauty of Certainty

I came across this short documentary about a man finding certainty about his life in the face of his death.
Brian Hendricks just learned that he has terminal cancer. Brian is a teacher and writer filled with the joy of life. He has the tools to put everything into a universal context – even his own death. But will these tools fail him as he wrestles with his mortality and what it means for his life, his family, and his legacy?
What do we know for sure? About ourselves, our purpose, and the people we love? Are we realistic about ourselves and our fate when faced with mortality? Does life become clearer or cloudier when we are dying? Our weaknesses, our failings, our anger, our hurt – what happens to them in the end? Watch one man’s struggle to answer these questions and find beauty in the certainty of his own death.

The Beauty of Certainty

Wednesday, December 2, 2015

55!!

Today is 55 months since my myeloma diagnosis. Yesterday was day 1 of cycle 15. Revlimid, velcade and dex. Today I'm operating on 4 hours sleep and fired up.


55 is also Anthony Barr a linebacker for the Minnesota Vikings. He went to UCLA. Go Bruins! In case you haven't been keeping track, the Vikings are looking awesome this year and there is talk of them being a Super Bowl contender. And that's not just me talking, although I am a bit focused on this possibility.


Check out this play by #55 in last week's Vikings game....







Tuesday, December 1, 2015

Full House

With the holidays, people have to adjust their chemo schedules. Full house today to accommodate folks who missed Thursday/Friday. 

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, multiplemyelomablog.com, 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.


http://m.jacksonville.com/news/metro/2015-10-31/story/jacksonville-man-learning-live-after-accepting-he-was-dying?linkId=18494423#article=679875DBF64242B8B822B3B65700E2A45973


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.”
LOOKING TO THE FUTURE
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.”
MOUNTAINS TO CLIMB
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.


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.


http://www.curetalks.com/event/rsvp/Evolving-Role-of-Stem-Cell-Transplant-in-Myeloma-Treatment-with-Dr-Krishna-Komanduri/229/?upcoming=yes

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. Chemo...no 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

54!!!!!

54 months since diagnosis.  Dr B today. Labs look good.  

Tuesday, September 29, 2015

No chemo this week

I will be getting a procrit shot later today to help my blood counts, but it's an off week from chemo. So I am at work and stuck in meetings. This is my myeloma journey.  Can you tell I'm bored?

Cure Talk on Myeloma Diagnostics This Week

This Thursday October 1, at 4 pm west coast time/7 pm east coast, there is a cure talk discussing myeloma diagnostics and testing. Should be a good listen. Call in number is

Saturday, September 26, 2015

#BradStrong

It's only been a few month since Brad passed away. I've written about him many times. He was a father, husband, friend and a one of a kind amazing person. His energy and drive and positivity was unique, and kept me going during times I was down. His community is raising funds to put his name up on a scoreboard at the little league field in his town.  I've attached the link below, if you're interested in helping. Thanks!

Honor #Bradstrong

Wednesday, September 23, 2015

A good friend is raising funds for his stem cell transplant

Please take a look at the attached link. Kenneth is a good friend and next week is having his second stem cell transplant. To do so, he's had to temporarily move 2,000 miles from home and go on medical leave. Any amount helps.

Kenneth's stem cell transplant fund


Also, a brief note. If you were thinking of getting me that Apple watch for my upcoming birthday, forget about it and think about helping out a friend.

Thanks!!!

Friday, September 18, 2015

Those funny kidneys

My myeloma impacts my kidneys. We track creatinin (or is it creatinine? (shit I don't know) to see how the kidneys are doing. At the height of myeloma activity, my creatinin was over 8. At that time my previous kidney doc wanted me to start dialysis. This was about 3 years ago. Once we got the myeloma under control, the kidneys started to improve. When doc Zoller scheduled me for dialysis, I opted to pass (and changed doctors, she was way too doom and gloom). To me, even though the numbers suggested kidney failure, my kidneys still worked. No swelling, I could still pee, no dry skin. Since then my kidneys have improved. At best, my creatinin has been in the low 3s. They are definitely damaged, so they'll never fully recover. Normal kidney function would translate to creatinin around 1 or less. Over 4 by definition means kidney failure. Low 3s translates to severely damaged. My kidneys likely have scar tissue, but they're still working. I take a blood pressure medicine (losartan) to open up the capillaries in the kidneys and help them bounce back. My blood pressure is always low. But the combination of low blood pressure and low hemoglobin, means that I often get real lightheaded when I stand up. I simply stop, put my hands on my knees and the dizziness passes.

Recently, my new kidney doctor loosened up my dietary restrictions. Generally a renal diet means no food with high phosphorus or potassium. No dairy, beans, nut, soy, spinach, bananas and so on. Because my phosphorus and potassium numbers were good, he gave me some freedom in my diet. In the past month or two, I've had nuts, ice cream, cheese and so on. I wasn't going crazy, but I was indulging. Two weeks ago my blood work showed my creatinin had snuck up over 5...back into failure range. My myeloma numbers were good, so the kidneys weren't showing the effect of strengthened myeloma. But something was going on. For the past two weeks, I've gone back to the strict boring renal diet. This morning was more blood work. Just got the call from Dr Phan's office. Results are in. And the creatinin is back to 3.9. Oh hell yeah, that's better.  I wrote a long time ago that the thought of doing dialysis scared the daylights out of me. I've walked through a dialysis center and it's sad. Very sad. Chemo I can handle till the cows come home. But dialysis...nope, no, no way. So I gotta baby these things. They're all I got. One side note, myeloma patients generally are not eligible for kidney transplants. Because of the cancer, we're bad candidates. Anyhow, hopefully they remain under control.  And I drink tons of water. Sorry California, gotta do it.

Here's a photo of me carrying my blood from Dr Phan's office to the lab. Because my veins don't work any more, we have to draw blood from my port. A nurse or the doctor has to do that. So I go to Phan's, get my blood drawn and walk it over to the lab. That's how we do it.

Chemo next week. Wrapping up another cycle of maintenance.  Berenson early October.

Tuesday, September 15, 2015

Vikings!!!!!!!!!!!!

That sound you hear is a bursting bubble. Every year I'm excited for the start of the football season and the Minnesota Vikings prospects. This year I've been more excited than usual. I think I'm more and more overwhelmed with how fast time is passing and how myeloma is a never ending battle... there are no seasons. And because of this, I get particularly focused on other non myeloma things. The Vikings for instance. Gracie and reality tv are a couple of other things. Anyhow, last night was Monday night football, week 1. The Vikings played and stunk up the joint. Such a disappointment.

Also of note, is that we raised nearly $500 from the pick em football league. Not bad. But I'll tell you this....I need a bigger event with more ooomphhh to raise some serious dough. Oh, after week 1, I finished 14th out of 19 teams. And both my fantasy football teams lost. I suck.

It's my off week from chemo, so I'm feeling good. I take revlimid at home on my off week and that gives me night time leg cramps. But other than that, all is A-ok.  My memory continues to worsen...chemobrain.

And that is all I got.

Tuesday, September 8, 2015

and here we go...

Tuesday morning. Back to work and back to chemo. It's cycle number who knows of maintenance chemo. dex, velcade, revlimid.

I had a nice long, 4 day weekend. Saw old friends, hung out, did normal regular Matt stuff. It was great. By 6 pm last night though, I hit the wall. I was all out of sustainable fuel and was pooped. Still pooped as I get ready for work. I need to focus on the great weekend I had with great people. And I need to not focus on the aches and creaks and tiredness that I'm going to have for the next several days.

All is well. Despite the new lab effing up my results (so annoying), my numbers look stable. Only tricky one is the creatinin, which continues to rise. This could be because I've added previously banned food to my diet. Back to the strict renal diet.

Monday, August 31, 2015

Another Cycle Down

Wrapped up yet another cycle of maintenance. Waiting for lab results. Berenson this Friday. Expecting all things to be stable. Tired as fuck. But that's normal. Within 10 pounds of my target weight. And the pull up challenge is on schedule. In one month, on my birthday, I have to do 10 pull ups. Starting at a base of ZERO.

And still looking for folks to join my NFL Pick Em Challenge. $50 buy in for the season. Half the funds go to our winner's pot and the other half goes to the Multiple Myeloma Research Foundation. You still have about a week to join.  My goal is 30 participants. We're about half way there. This week, I need to push and bug people. Fund raising ain't easy, but it's rewarding for shizzle.

Tuesday, August 25, 2015

Two Line Update

Yesterday I wrapped up the latest cycle of maintenance chemo, which means tonight I have dex induced insomnia.

Later this week, I do my 24 hour urine and give several vials of blood for my monthly myeloma labs, which will be followed by a Sept 4 Berenson visit.

Bam.

Friday, August 21, 2015

Tackle Myeloma Pick Em League

Less than two weeks until the NFL season starts. But you still have time to join our Tackle Myeloma Pick Em league. Simply pick the winners of each game every week of the NFL season. $50 buy in for the whole season. Money is split between our league winners and the Multiple Myeloma Research Foundation.  Follow the below link to join. Password is bloodcancer

http://football.fantasysports.yahoo.com/pickem/2701

Wednesday, August 12, 2015

What About My Stuff

Today was day 1 of cycle 11 of my current maintenance regimin. A cycle is roughly one month. The current cycle was preceeded by 8 cycles of treanda/bendsmustine, which was preceeded by 10 cycles of maintenance, preceeded by 12 cycles of my initial foray into treanda after 3 previous drugs had no impact. Well you get the point, that's a lot of chemo.

But I feel good. I'm losing weight and working out harder. I'm coming up on 54 years old and I'd say I'm in good shape even compared to a non-cancer 54year old. Ego and narsicism keep me going. That and American Ninja Warrior, a tv competition show with incredibly fit people.  Say what you will, but the show has motivated me to kick things up a notch.

Re├žently, I've been cleaning out my garage, going through my stuff. I recall a hilarious George Carlin monologue about our "stuff" from the 1970s. Spot on.  Anyhow, I was able to toss or put in the yard sale pile a lot of stuff. However, there some things I can't part with. My stacks of game programs or magazines with the Vikings on the cover or some other game or athlete...from decades ago. I have shot glass and casino chip collections that I can't part with. There are random memory filled nick knacks that I want to keep.

But for what? What do I with them? What happens when I die? Do I specify these things go in my coffin with me? Note: I really need to do a will. One thing I will absolutely specfiy is that my ashes are buried alongside the Mississippi River that bisects the Twin Cities in Minnesota, St Paul and Minneapolis. This is a must.

I mean it though. What do I do with my stuff that I want to hold on to but don't even see on a regular  basis. Do I schedule stuff visits? Don't get me wrong, I plan on being around a long time. But as a myeloma patient, I know that things can change and turn for the worse very very quickly. That mental cloud and the rigors of constant chemo and treatment put myeloma  patients in a precarious state. I know folks who have survived much longer than me and folks who haven't. At 4 plus years, I'm getting to be a surprise old timer. Looking at my condition and numbers from year one, you'd never have thought I would still be here. Some would say I am playing with house money..a gambling reference when a bettor has done so well and set aside enough winnings that going forward the bettor has nothing to lose. It's house money, i.e. the casino's money. It's a great position to be in.

So... What about my stuff? Furthermore, does it matter what I drive or what I wear or what I say? Do I have carte blanche to do whatever I want? Straddling life, death, fatigue, energy, work, home, living is a juggling act.When people ask what I did last night or over the wekkend or what I do in my spare time, I find this hard to answer. Here's what I do. I work, I go home, I do chemo, I see a lot of doctors, I rest, go to the gym and that's it. Spare energy to do anything but these core activities is limited. Not really super fun or a great conversation topic. Leslie suggests I just tell people exactly what I did or plan to do. Perhaps. 

So it's all about my stuff, literally and figuratively.

Sunday, August 2, 2015

Saturday, August 1, 2015

Football Pick em and the MMRF

It’s just about football season.  Excitement is in the air.  I’m super confident that this is the year the Vikings win the Super Bowl.  You heard it here first.

I’ve created a football pick em league this season. Each week, you simply pick who you think the outright winner of each game will be. No point spread. You do assign a confidence ranking… typically 16 to 1, with 16 being highest confidence.   Buy in is $50.  Half of the funds collected go the Multiple Myeloma Research Foundation, obviously an organization that is quite important to me.  The remaining funds go to weekly winners as well as season ending top 10.  I can’t say how much until we have everyone signed up. My goal is 100 participants.

You’re invited to play.  It’s fun, for a good cause and you can win some money.   Instructions for joining are below. Feel free to share with anyone who might be interested.
 
 
  Welcome to Yahoo Sports Pro Football Pick'em.
To join this group, send them the Group ID# (2701) and the Password (bloodcancer). Remember, it is the Group ID#, not the group name, that other people must use to join your group.
You are now ready to participate in Pro Football Pick'em. Your goal is to earn more points than other people by selecting the winner of each of this year's games.
Thanks for joining. Good luck.
 
-- Pro Football Pick'em Commissioner
http://football.fantasysports.yahoo.com/pickem

Wednesday, July 29, 2015

Leukemia and Lymphoma Society First Connection Program

The Leukemia and Lymphoma Society has a number of great programs. One is their First Connection program. It connects newly diagnosed patients with someone who has similar experiences with the same cancer. Tonight was my first training to be a First Connection Volunteer. Soon I'll be off and running. When a newly diagnosed myeloma patient calls the LLS,  I may be provided the patients contact info. I'll have one or two calls with the patient to provide support, listen and share my experience. It's a great program and I'm excited to participate and give back.

Also this week, I did my first myeloma twitter chat in partnership with WeGo Health. It's an hour Q and A, where fellow patients share information or answer questions. My job as host was to pose the questions and keep the discussion moving forward. It was fun and interesting and I hope to do more in the future.

Day 15 of the current chemo cycle was yesterday. Tomorrow I do my 24 hour urine collection and give several vials of blood. Next week Berenson.

The good news is that creatinine is back down to 3.3. and hemoglobin is up to 11. Both good omens for positive news with my myeloma numbers.

And that's my story.

Monday, July 27, 2015

Tuesday July 28 Twitter Chat

Don't forget Tuesday July 28 at noon west time, I'm hosting a twitter chat to discuss the patient experiences of multiple myeloma, an incurable blood cancer. The one hour event is presented by Wego Health. If you want to participate, follow along or ask a question, simply follow this link or use ‪#‎HAChat‬

http://twubs.com/hachat

Friday, July 24, 2015

Myeloma Chat on Twitter Tuesday July 28

On Tuesday July 28, at noon o'clock west coast time, I'll be hosting a twitter chat to discuss myeloma and myeloma challenges.  To participate, ask questions or follow along, just use the hastag #HACHAT.  WEGO Health is putting the chat on. The chat will be for an hour. To make things even easier, you can simply use this link:    http://twubs.com/hachat

Diet flexibility

Saw my kidney doctor this week.  Everything good with the kidneys. In fact he loosened up my dietary restrictions.  I can have a little bit of dairy now and again. One of my favorites: apple sauce and cottage cheese.  Haven't been able to have it in over 4 years.  And, bam! Here it is. 

Wednesday, July 8, 2015

Hit the Wall


It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good.  However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy?  Heck no.

The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week.  All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.

And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.

Thursday, July 2, 2015

Sunday, June 21, 2015

Happy Father's Day

I'm waiting for Gracie to make me breakfast.  Might not happen.  Damn dog.  Anyhow, I'm good.  Started up the latest cycle of maintenance the other day.    Not much else to report.  

Side note: two years ago I bought two seats from the now demolished Metrodome, where the Vikings played.  Seth and I were at the second to last Vikings game in the dome. Leslie's brother made a cool stand for the seats.  Check it out. 

Friday, June 12, 2015

Denali

7 minutes of your time is all that is needed to watch this absolutely beautiful short film.

Sunday, June 7, 2015

#Bradstrong forever

rest in peace brad coustan. you and your family have been a beacon for me. 

Saturday, June 6, 2015

Recovering

Today is a complete do nothing day. I've got to be serious about health and recovery.  Here are some of my supplies. 

Friday, June 5, 2015

Leslie





 
 
Today I returned to the pulmonologist. When we saw him the other day it was me and Leslie. Today it was just me. I went straight from work. His first question wasn't how I was doing? It was, how's my wife. He then told me how wonderful she is, that she is an amazing caregiver and caring person and I was lucky to have her.  All true.
 
Leslie has been with me throughout my 49 months of myeloma. Taking care of me, talking to doctors, driving me around, giving me shots, encouraging me and on and on.  Being a caregiver is a tough job.  In many ways, I think cancer is tougher and scarier on the caregiver and loved ones than it is on the patient.  
 
We had a scary week this week. It was a real reminder to me that I'm dealing with something serious and I can't get lax about things.  When I woke up Monday night with trouble breathing, Leslie jumped to action...nursing me back to a level of comfort.  Tuesday, if I had been up to me, I would have stayed home, not seen the doctor and talked/lied my way into having chemo.  Leslie said no to all that. She took me to Phan, took me to a pulmonologist and to the lab.
 
Long story short. Leslie was right. I had a close call this week. I'm better. Not 100%, but better. I and we are fortunate to have our caregivers and are loved ones.


Thursday, June 4, 2015

Uncertainty

Pat Killingsworth, a myeloma advocate, mentor & friend, recently wrote me that uncertainty wears us down. So true. This week was my 49th month. I wrote about that. But this week I was also pretty sick. It's likely just a virus. Our immune systems are comprised, so any cold, virus or whatever has to be handled immediately. Monday night I was coughing, wheezing, achy, and I had trouble breathing. Leslie and I did what we could do to clear me up.(vapor, steam, etc)  For a minute, we considered going to emergency to get me checked in.  Leslie called Phan Tuesday morning and his first suggestion was hospital. F that. I hate the hospital.  Tuesday we saw Phan, a pulmonologist, did blood work, chest xray, and cancelled chemo. We needed to make sure it's not pneumonia or some sort of infection. I have been sweating a lot and at random times....which was one of my early symptons. That worries me a bit.

Monday night, between hacks, I did have thoughts that this might be it. For a minute there I wondered if I'd make it to month 50. Actually I wondered if I'd make it to Friday.  I'm fortunate that I'm doing as well as I am. My first year was real touch and go. But for last two years, I've been on cruise control and living a normal life (putting aside constant fatigue, chemo, blah, blah, blah). But there is that uncertainty that Pat mentions. It's like having a month to month lease. 

It's a wake up slap when a hiccup happens. So far no phone calls regarding my tests.  That's good.  I'm feeling much better. I'm on antibiotics and two different inhalers. I was back at work today and I'm back to normalcy (whatever that is)

Monday, June 1, 2015

49

Tomorrow is June 2, 49 months since my myeloma diagnosis.  I'm bringing things full circle. 49 was Ed Marinaro, who played for the Vikings from 1972 to 1975. He played in two Super Bowls for the Vikings.
He played college football at Cornell and was runner up in the Heisman Trophy voting in 1971, a huge accomplishment for an Ivy League football player. He led the nation in rushing his junior and season seasons.He played 27 games for Cornell, 1969-1971, and averaged 174.6 rushing yards per game. Marinaro had 10 games in which he exceeded 200 yards; this includes, in 1969, 245 against Rutgers, 281 against Harvard; in 1970, 260 against Lehigh; in 1971, 272 against Columbia, 260 against Colgate. In 1971 his average was 209 a game, an NCAA record that lasted 10 years. That year he led the nation in scoring, rushing and all-purpose running. He was all- America twice and in 1971 won the Maxwell Trophy and was named Player of the Year by Columbus, Cleveland and Washington Touchdown Clubs. I'm gonna say it, he should have won the Heisman Trophy.
 After finishing his career, Ed played the role of Officer Joe Coffey on Hill Street Blues for several years.



Why Ed Marinaro you ask? Full circle, you ask? Way back in the early 80s, I lived with my Uncle Jan and my best friend John in Santa Monica. I was just a young pup. Jan had a friend, Debbie, who became my friend.  I've written about Debbie before. She was the first person to talk to me about myeloma. She was diagnosed a couple of years before me. She told me everything would be ok. I hadn't talked to Debbie for many years when she contacted me back in May, 2011.  Debbie went to Cedars Sinai for her treatment. When her myeloma got tricky, her doctor sent her to Berenson. I'd see her at Dr. B once in a while.  After not seeing her for several weeks and leaving her a number of voice mails, my suspicions were raised.  Shortly thereafter, a friend at Dr. B's office confirmed my worries, that Debbie had passed away. Heartbreaking.

Anyhow, to lighten it up..Debbie had a friend, Lisa Frazier, who was several years older than me. Lisa worked for Charles Schwab, was blond, funny, and drove an old TR7. So cool.  Anyhow, Lisa and I dated for a short while. In her apartment she had a couple of pictures with two celebrities who she had dated. Tony Danza and Ed Marinaro.  As a truck driving 20 year old snot nosed punk, who was on a break from UCLA, these photos were a bit intimidating. This was one of those times in life when I truly felt I was out of my league. 

Even though we stopped dating, we remained friends. I saw Lisa once after I went back to school. But that was it. Debbie told me she talked to Lisa once in a while.   

So that's my 49th month.  Today I have a cold and I'm so fricking pissed about it.  Worked half day so I could come home, sleep and knock that shit out.  Tomorrow is the 15th day of the current chemo cycle. Last time I was sick, Phan made me delay chemo for two weeks. That was not ok with me. And if I have to miss tomorrow because I have a cold, I'll be seriously unhappy.

Other than that, all is good.

Friday, May 29, 2015

An Update without an Update

I haven't posted in a while. Don't worry...everything is good.  I'll post a longer update in a few days.  For now I leave you with this picture...


Tuesday, May 19, 2015

A short myeloma update

I had my monthly Berenson visit yesterday. I usually go on Fridays, but because of schedules, I went on a Monday. Wow....Monday's are super crowded at Dr B's.  I'm  good. Numbers are stable, My myeloma and kidney labs look good. So we continue with maintenance. The latest cycle of maintenance begins today. Work, gym, chemo today. WGC.  Talked briefly to Dr B about skin cancer. He said that yes it can happen...thanks to velcade and a lowered immune system. But he said not to worry, it's no big deal.  Ummm.....ok. I guess every once in a while we'll remove something from my skin. He also mentioned that medical schools aren't getting the best and brightest. Apparently it's difficult to get youngsters to pursue medicine. The reason? Being a doctor is not a money making profession. And that's it. Short visit. Always a good thing.