Friday, August 30, 2013

More on Running

In the spirit of my previous post, below is a link to post from a tri-athlete whose father has myeloma. She dedicated her tri career to raising funds for the MMRF. Her dad used to be an avid runner, but after his diagnosis and took up golf with a passion.  Really good reading. Follow the below link...

http://chitoandkgo.com/2013/08/30/fractured-opportunity-or-opportunity-born-of-fractures/

Push to 180

I written a fair amount a life time battle with my weight.  I was a pretty chubby kid, which is difficult for any kid but is exasperated when you have a name that rhymes with Fat.  I finally gained control of my weight my senior year of high school when I become passionate about running. Ironic in a way that my love of running hit me as a senior, when you consider I ran track, not too successfully, as a sophomore and junior.  In my Al Bundy-esque high school glory moment, I ran a 5 10 mile as senior. Naturally I didn't run track that year. But I run my whole life after that point until I hit my early 40s. At that point, my knees, hips and ankles are become too achy. So running stopped.

And while I don't have bone problems from the myeloma, I'd be afraid to even consider running again. I imagine it can't be good for me bones. Although I have to say there is a myeloma survivor, Don in Minnesota, who when diagnosed in his mid 60s, set a goal of running a marathon in every state. He's accomplished that goal and then some. He's a pretty good role model.

As a cancer patient undergoing chemo, watching my weight normally wouldn't be a concern. Phan has never worried about my weight. Typically a cancer patient losing a bunch of weight can be a bad thing.  Appetite is often impacted by chemo. But I've never had that problem. I've eaten well this whole time. Plus, I've been on a constant diet of steroids, which make me uber hungry. Several months ago, my kidney doctor suggested I lose some weight. I was pushing 215 and getting seriously fat. I buckled down and as of a month ago I was down to 188. But I'm getting lazy with my eating. I exercise regularly, but I've been eating a lot. I'm back up to 195,  Not good. I really would like to be 180.  So starting tomorrow, I'm making the push to 180. I really really want to hit that goal. It's important for how I feel physically and also how I feel mentally.  This myeloma fight requires positive attitude, self confidence and discipline. Hitting my weight goal will help me tremendously. My friend Brad mentioned to me that we might be in the dog days of myeloma right now. We've both been a bit tired this past week or two. We'll fight our way through it.

I've also mentioned recently my desire to minimize my meat intake.  I've got kidney issues, and am on a modified renal diet, so I'm a little limited on what alternative sources of protein are out there for me. Beans, soy, dairy are all on the minimize my consumption list.  But my kidneys have improved enough where I can some add things back in to the diet.

 I can do this. I'm riding a lot and swimming more and lifting weights regularly. So I got the exercise down. Its just a matter of getting food intake under control. Push push.

Quote of the Day

Life begins at the end of your comfort zone. Neale Donald Walsh

Monthly Collection Day

It's time for my 24 hour collection. Checking for total protein and upep/percent of total that is bad protein 

This is coming to work with me today.  Fun. No bike ride to work today. I'm not fond of riding across town with a jug of urine on my bike.

Thursday, August 29, 2013

A Scared

When I was a kid, we'd go to our grandparents house out in the San Fernando Valley on Sundays.  There are a few things about those visits that I distinctly remember.  I remember the gum and candy drawer in the kitchen. You'd just open the drawer and there would be a gold mine of stuff.  I also remember swimming with the grandparent's dogs, German Shepards. I think one of them might have chipped my sister's tooth.  One of the dogs was Timba.  Growing up I watched a cartoon called Kimba the White Lion. Loved that show and loved the name, The problem is I thought it was Timba, as opposed to Kimba. So when my parent grandparents asked what they should name their dog, a white haired Shepard, I suggested Timba, named after the white lion. The name stuck and Kimba was Timba. (I almost wrote Tomba, which reminded me of Albert Tomba, the Italian champion alpine skier).

The other thing I remember about the grandparents house was the crawl space above the hall way.  We'd walk under the door to the crawl space in the ceiling every time we went to the house. My uncle Jan, about 10 years older than me and my sister, told us that there was a boogie man up in the crawl space. He'd ask if we wanted to go up there and see it. Heck no. I never did. That was a scary thought.

The past few days was a bit of a nervous, scary week.  I'm feeling pretty good. Been riding to work. But I've also been more tired than usual.  Typically for a few days after chemo, I'm tired (once the wired feeling wears off). But after the tired, I feel great. I have a week or so of feeling awesome leading up to the next chemo treatment. I've mentioned in previous posts, that when I am feeling good, I think I feel better than have since way before my diagnosis. It's a great feeling, feeling great. I forget that I even have myeloma.  This week though I've been tired.  Prior to my diagnosis, when I'd ride my bike, I'd feel like I couldn't catch my breath.  I don't get that now, which is a good thing. But I haven't been sleeping well. I wake up a lot at night, and by4:30 or 5 AM I'm awake. So being tired might be a result of that.  Nonetheless I've been worried that the tiredness is a sign that the myeloma is gaining strength. It's kind of been hanging over me, which absolutely sucks. That's the bitch of having myeloma. It's always hanging out in the background. The last  blood work I did was good, showing we have the myeloma under control. I talked to Dr Phan today and he wasn't worried. This weekend I do my monthly large lab work. Pee and blood.  These results will tell me for sure, how I am doing. Given my fear that the myeloma is powering up, I'll be on edge waiting for the results. Combine that antsiness with the moodiness I get from dex, and for the next few days, it is not going to be fun around me.  I'm sure we'll get the lab results and everything is fine but for now I can't help being a little a scared.

Sunday, August 25, 2013

Cure Talk Support Group Weds August 28

This Wednesday, August 28 at 3 PM west coast time/6 PM east coast time, I'll be participating in another Cure Talk panel discussion.  The subject is Treatment Extremes: Comparing and contrasting different treatment options.  Should be interesting, given I've gone the non stem cell transplant route.  Joining me will be Pat Killingsworth and Cynthia Chmielewski.  Here is a link to register....

http://www.blogtalkradio.com/curepanel/2013/08/28/myeloma-support-group-discussing-treatment-extremes

Scraped Face


Yes, I'm now an old man. 


Intern luncheon

Here's a couple of photos from the high school intern luncheon. The first is me and UCLA bound Raslyn. The second is me and Makaylah with Jesse photo bombing. 


Friday, August 23, 2013

Exercise and Myeloma from Pat Killingsworth

Pat Killingsworth is a fellow myeloma patient and a frequent contributor to various panel discuss on the cancer.  In the latest post on his blog he discussed the benefits of exercise on myeloma as well as the impacts of chemo and steroids.  Have a look see:

http://multiplemyelomablog.com/2013/08/exercise-myeloma-help-with-chemo-brain.html

In Case I Wasn't Sure, I'm a Grown Up

Yesterday was the final day of work for the high school interns. 8 weeks is over. Whoosh, it went by so fast. Raslyn, my intern, Raslyn, attended the California Academy of Math and Science (CAMS)and is now headed to UCLA.  The bureau I work in actually had three interns. The other two, Jesse and Makaylah, attend CAMS, a super advanced high school that sits on the campus of Cal State Dominguez Hills, a state university.  All three are smart, engaging, funny and very cool.  My favorite part of each of the past 8 weeks was when the three interns, me and the other two mentors got together to chat. Each week one of us did a presentation about whatever we wanted and then we'd just sit and talk. 

Yesterday was our last weekly meeting.  Jesse was recently appointed by Jerry Brown, the governor of California, as the student representative on the California Board of Education.  Makaylah during her 8 week internship led the creation of a non-profit which aims to promote sustainability.  Raslyn already has plans to go to medical school and has volunteered at Long Beach Memorial Hospital.  Three hugely impressive kids, if you can call them kids. Jesse yesterday in our meeting shared speech giving tips. He's been doing Toastmasters since he was 9.  He told us to always start with a metaphor and always include a quote. He also said before you give a speech, have an inner dialogue where you tell yourself you know more about what you are to talk about than any one in the audience.  Good tips. Jesse reminds me of my nephew Dillon for a whole bunch of reasons.  Dillon is absolutely one of my favorite people.  Dillon and Jesse are both quite proud of how they fast they are.

Yesterday there was a luncheon for all 20 of the port's interns, their families, mentors and port management.  I knew about the luncheon beforehand, but I actually didn't realize that the kids families would be there. I sat at a table with Raslyn and her family. I told her dad, with pride, how great Raslyn is and how I learned a lot from her. And I meant it. Makaylah gave a presentation and did great. I watched with pride as she spoke. Rose, her mentor, might have had a tear in her eye. Rose and I joked that we felt like proud parents watching our three interns get their certificates. It was really a great moment. I can only imagine how much pride a parent must feel when one of their kids has a momentous achievement.

As I have said before, I fought against participating in the mentor program.  I saw it as waste of my time. But it truly turned out to be a great experience, that likely left a lasting impact on me.  The young adults got me motivated, broadened my interests, and without them knowing it, were mentors to me. After lunch, Rose and I both said how we already missed them.  

Meanwhile the scene changed today, Friday. An off day from work.  I started the day at the gym.  Good. I followed that with two hours at the bank. We have insurance checks for the water damage, but the insurance company makes the checks to me and my mortgage holder, Citimortgage. Citi has a policy about not endorsing insurance checks that exceed a certain dollar amount. Some of the insurance money is due to dry out work contractor. After faxes, phone calls, working with the local banker and a Citi rep on the phone two hours went by, I was able to get one check endorsed but the other we still have to work out. Truly frustrating.

I got to the bank at 9 AM and left at nearly 11:30.  I then had a noon appointment at a dermatologist.  I've had a few odd dry patches on my face and neck and needed a dermatologist to look at them.  I do have myeloma after all, and one of the things that hangs over myeloma patients is the chance of getting secondary cancers as a result of the drugs and steroids we take.  I don't think skin cancer is one of those possible future cancers, but I needed the patches looked at nonetheless.  Turns out they were pre-cancerous spots. Pre-cancerous is what the over-caffeinated dermatologist first told us.  He later said that they were cancer, but they were removed and he said I was cured. We caught them very early so nothing to worry about. I'm not sure what they were, pre-cancerous or cancer. Either way, he numbed them and scraped them off.  It all took maybe 10 minutes.  I'm fine now, but I have 3 scrapes on my face and 1 on my neck.  And because of my immune system, I've got to put a prescription topical cream on them to ensure I don't get any sort of have infection. 

After the dermatologist, Lesle and I went to lunch. I did a mental recap of the day and the week. I told myself that when you start having things scraped off your face you are truly getting old.  I've now crossed the line.  I thought about meetings at work, the home repair work, my pride over the interns moving on, the face scraping.  I continue to stay on top of the myeloma. My approach to myeloma is laser like. I'm focused on keeping it under control.   Everything I thought about was stuff that adults are faced with all the time.  For so long, I avoided adult issues. Life was pretty simple.  Simple, until May 2, 2011 hit.  That changed my life.  I've been forced to deal with adversity. I think I am doing a pretty good job. But, damn, I am absolutely grown up now.

Monday, August 19, 2013

Latest Blood Work

Vacation, food, beer and chemo translate to numbers looking good. Still holding steady. Whiteblood cell 5.1. Hemoglobin 11.1 (no procrit this week). Creatinin 3.77 (steady after week of not being on renal diet). All good. We continue forward

Sunday, August 18, 2013

Reality in Full Swing. What to Eat.

I vaguely remember a joke as a kid, that went something like this: why did the man throw the clock out his window? He wanted to see time fly.  Seemed funny as a kid. I can picture this joke on a popsicle stick.  Now as a adult, a fully grown man, it's not as funny. Why? Because time flies all on its own.  It whizzes by. And I'm not sure how I feel about that.  It's getting to be late August. 2013 is winding down. I'm approaching 28 months since my diagnosis.  I'll be 52 in October.  What the heck?

It's hard to believe that last week we were in New York.  It really was one of those life changing/life reaffirming trips.  Woodstock was absolutely beautiful.  The wedding and the setting and the people were awesome. Our trip to the Woodstock Farm Animal Sanctuary really did a number on me and Leslie.  Not sure if folks recall,  but a few months before my diagnosis, I quit eating meat.  I'm an animal lover. Not quite a Peta member animal lover, but perhaps on my way.  After quitting meat, my energy went way down. I figured it was because I wasn't getting enough protein. Turned out that my energy was low because of the myeloma and the anemia that comes with it.  Some folks with myeloma have bones issues. Others have kidney issues. I had/have kidney issues.  Because of my kidneys, I was on a strict renal diet for nearly two years.  Foods with lots of potassium and phosphorus were no nos. This ruled out nuts, beans, dairy...all alternative sources of protein. My doctors told me I needed protein to fight the cancer. So meat was added back to my diet.  I can tell if I have't had protein. My energy and mood take a hit.

My kidneys still aren't perfect, but they've improved enough such that I've been able to add foods (in moderation) to my diet.  While in NY, I let myself go and ate a bunch of stuff I've worked hard to avoid.  Saturday I did blood work. I'll get the results tomorrow.  We'll see what the trip and eating does to my creatinin, which as we know is the metric we use to measure how my kidneys are doing.  If the number is roughly the same, I'll consider that a success.  I can continue to add foods back to my diet.  It would also mean that I have choices in terms of my protein intake. I might be able to cut back on the meat eating.  This is good. As I said in a recent post, after visiting the rescued farm animals, it's going to be tough to eat animals.  They have feelings too.  The question then is how I balance my dietary needs in terms of fending off the myeloma versus my desire to not eat meat. It's a difficult balancing act. I'm open to suggestions.

We flew home Weds night from vacation, The next day I went to work and had chemo. No break.  I've been feeling great. Felt great the whole trip. Myeloma doesn't impact my life. That was the goal from the get go.  But having chemo is a stark reminder.  Dr Phan actually had a talk with Berenson the other day. They discussed briefly if I could take a little drug vacation.  The answer was a definitive and firm NO.  Any little break in my regimen gives the myeloma a chance to rev up.  My buddy Brad went off his meds for a few weeks leading up to his stem cell harvesting. That little break allowed his myeloma to strengthen a wee bit. Fortunately he's got a drug mix that works and he's back after it. But that's the thing with myeloma. It's always lurking. You might say myeloma is a stalker.

This weekend, I've done a whole lot of nothing. I have gone to the gym and done some easy chores at home.  But I have the post chem/dex tiredness this weekend, so it's pretty nice just kicking it. Tomorrow, I'm back at it. Work, riding my bike, focused, determined.

I skipped my monthly Berenson visit this month. I did my regular monthly myeloma labs and saw that everything is stable, so no need to see Berenson. I'll see him in September, which will be here in no time.

The Latest from Bradstrong

As you know, while in New York, we met up with a couple of my fellow myeloma survivors, Brad and Amy, plus their families, at the Yankees game. It has to become an annual event.  Both Brad and Amy have great attitudes and are absolutely part of my support team.  Brad writes a great a blog, he never fails to get me motivated.  Here's his latest...
http://bradstrong.wordpress.com/2013/08/18/818-the-bucket-list/

Thursday, August 15, 2013

More Vacation Over

Truly a great week.  Too many things to even mention.  Today was back to reality. Worked half the day. Then chemo, the start of cycle 16 of maintenance chemo.  Now flying high on dex, with anxiety, paranoia, and irritability thrown in. Yipee.

Anyhow here are a couple more photos from the trip. 




Monkeys Out, Goats In

On my animal heirarchy, dogs are number 1. That's a given and will never change.  Number 2 for some time has been monkeys. However, move over monkeys, the goats are taking over.  In Woodstock, we went to the Woodstock Farms Animal Sanctuary http://www.woodstocksanctuary.org/ . It's an organization that rescues at risk, injured or abused farm animals. The animals get to live worry free on this amazing spot. Visitors and volunteers are welcome. When you meet the animals, you really begin to question yourself about being a meat eater. It's hard to eat a cow after you look eye to eye with one. Anyhow, I came face to face, eye to eye with a number of goats. They are so cool. They follow you, nudge you, acknowledge you. Pretty cool animals. And because of this, I'm moving goats to number 2, displacing monkeys.   Below are some photos from our visit.


Wednesday, August 14, 2013

Vacation Over

I'll write more later. But everything on this trip was perfecto. Went to Yankee game with two of my fellow myeloma thrivers, Brad and Amy. Both are doing great. Awesome experience. 

Thursday, August 8, 2013

What's Up

Thursday.

Normally, tomorrow would be my monthly visit with Berenson. But we're traveling tonight. Heading to the east coast.  Family wedding and vacation.  I'll likely also be meeting up with a couple of fellow myeloma survivors and their families. Most likely we'll be going to a Yankee game together.  Should be awesome. The whole trip.   I just packed up my medicines for the trip. Remember last year when I made my first trip since being diagnosed. It was nervous time. How would security work with my port?  What about my liquid medicine...could I bring it on the plane.  Traveling now is old hat. I don't  have the questions. I know how it all works. It's all good.

I'm a little nervous about skipping Berenson this month, But my labs are all the same and I know he'd keep me on the same path. So it should be ok. 

We get back Weds. And Thursday it'll be back to work and back to chemo.  No breaks.  And that's what has been somewhat overwhelming this past couple of weeks. I've really been ready to hit my re-set button. Start over.  Between work, my focus on my health, our home being turned upside down thanks to the water leak and the usual other life surprises, I hit the wall.  I've been getting through the day.  But when I've been home, I shut down. I've been a moody son of a gun. And I've avoided talking to people. I think I am snapping out of it, and ready to kick things into a higher gear.  Diet, exercise, serenity, focus, domination and "You only YOLO once" (courtesy of Workaholics, a damn funny show).

Here's a photo of my medicine for the trip,

Tuesday, August 6, 2013

Blah

The subject says it all. This is how I feel about myeloma right now. Tired of it. Tired of thinking about it. I feel good. Just got preliminary lab results. Everything stable. Good stuff, right?  I recently passed the 27 month date since diagnosis. Also good right?  But man, myeloma can mess with your head. Makes me question everything. Why? When? Who? What? 

Monday, August 5, 2013

Gift from Intern

Got this today from one of the high school interns. Pretty fricking thoughtful.
 

Friday, August 2, 2013

Oh What a Difference a Day Makes

Yesterday

Today


Avoid Aspartame. No More Diet Sodas. No More Fake Sweeteners

We've long suspected that aspartame played a critical role in me getting multiple myeloma. Before my diagnosis, I'd drink several cups of coffee a day, each and every one containing at least 6 packets of equal. I also chugged a whole lot of diet soda.  Now, I don't touch the stuff, except, unfortunately with the occasional piece of sugarless gum. Even that I try to avoid,

Well, here is a study that adds credence to my theory. It's too late for me to avoid those impacts, but I can ensure I don't make the same mistake as I work to complete myself in partial remission. I strongly suggest to anyone else who consumes the fake shit, cut it out. Drink water. It's the best thing for us. Let's all vow, no more diet soda. No more fake sweeteners.

http://healthy-naturally-weightloss.blogspot.com/2013/07/aspartame-linked-to-leukemia-lymphoma.html

Faces of Myeloma

Thought I'd share.....
https://www.smore.com/9mkq-cure-panel-s-inspiration-support?ref=email-content#w-6517419299

Chemo Today

Today was chemo day. Day 15 of the latest cycle of maintenance. All is good. I feel fricking great.  Tomorrow I do my monthly 24 hour pee collection. I really really didn't want to do chemo this week.  I'm feeling so good and doing such a good job of not thinking about the myeloma, that going to chemo felt like a rude slap in the face. A cruel reminder. I did meet a great funny older lady today at Phan's office. Today was her last treatment, She'll return to Phan in a couple of months to make sure her cancer is still in remission. I really liked meeting her today. She was so sweet and so positive. Loved her energy and attitude and humor. She often brings her whole family, including grandkids to her treatment. Today though, she drove herself, a real milestone in her journey.

But I can't miss a treatment. Even day delays jack me up in the head. Like I've said, I've become a bit compulsive about my treatments, Don't change what ain't broke. I also pondered not doing my pee collection this month and not seeing Berenson.  That I might be able to do. As long as I feel good, I'm fairly certain my numbers are ok. However, if I didn't do my lab work this month, I'd be a hell of a mess in the noggin. Just thinking about not collecting my pee had me fighting off a mini anxiety attack the other day. So I'll do the collection, see the results and then decide if I'll see Berenson. When I see that my numbers are all good, I can skip Dr B, knowing that he would keep me on the same path. I'll decide early next week.   In them meantime and coincidentally Berenson is giving a talk next week about myeloma in Phan's office. After 27 months of them both being my doctors, this will be the first time they've met face to face. I'd like to sit in on the talk and am going to try to make it work. I imagine Dr B will discuss all the new treatment options for myeloma.  Just in my 27 months (Aug 2 is my 27 month cancerversary), there have been a number of new, effective drugs added to the treatment option list.

Well, it's 2 AM here and I need to get a couple of hours sleep before I go to work. Super productive day ahead with the steroid (dex) high. Saturday and Sunday? Crash.

Thursday, August 1, 2013

A Cancer Patient's Post of How Cancer Gave Him Purpose

Tomorrow marks 27 months since my diagnosis. I'm feeling good. Riding a lot, continuing to get in better shape every day.  I've been doing a lot of pondering about what I can do early next year, in terms of an event. It gives me a target. I need the target. It keeps me focused and looking forward.  Plus I want to do some fund raising for myeloma research. I'm still not sure what the event will be. But I did read the following blog and it got me fired up for dominating whatever I do.  There are so many blogs and cancer support networks out there, truly amazing. And really powerful in terms of the energy that gets shared. With that said, have a read.....

http://jonathanthriving.wordpress.com/2013/08/01/cancer-gave-me-purpose/?contact-form-id=167&contact-form-sent=178&_wpnonce=f366718251