Saturday, May 31, 2014

Back Home. Slapped by Reality

Came back from Colorado and doing the BolderBoulder 10k on Tuesday.  The trip and experience was A-1.  We had 17 family participants, some of whom I haven't seen in years, plus one who hadn't seen ever. That would be Liam, my niece Destiny and her husband Justin's 5 month old boy. I guess that makes me a great uncle. Or is it grand uncle?  My brothers kids have all grown. Megan, his oldest, cut my hair. Much needed. Really the best cut I've had almost ever. The problem now is she lives in Colorado and I live in California. What happens next month? Anxious about that already.  The 10k was the capper. So much fun. 50,000 participants, with maybe that many lining the route handing out beer, belly dancing, slip and sliding and so on.  My Mom was a champ. She flew in from Berkeley and did the walk no problem. 6 miles.  Our fund raising tally hit $8,300, thanks to some last minute persuasion by Suah.  Team t shirts provided by Leslie.  And if you're interested, I'm keeping the donation page up for a while if you'd still like to throw some dollars to a great cause.

We flew home Tuesday as I said. I had a flight scheduled to land at OC airport at 12:30 with a new cycle of chemo scheduled for 2 the same day. I took an extra week from chemo so I'd feel good in Colorado. So making Day one, was critical for me. About 15 minutes from landing, our plane started making lots of turns...right turns. We were flying in a holding pattern. 20 minutes went by until the pilot came on to say we were diverting to LAX where they had longer runways. Our flaps weren't working. The pilot said we'd see emergency vehicles on the ground when we landed, but not to be alarmed.  We landed no problem in LA, saw one fire truck and all breathed a sigh of relief. For a few moments as we approached the runway, I had did have concerns and cinematic type visions of the plane skidding off the runway and bursting in flames. I'd imagine other passengers did as well. I think Leslie did, she posted something on facebook just in case. Anyhow, the possibility of the plane burning didn't get me get me too excited. Perhaps because of the past three years, I'm at ease without whatever my fate might be. Maybe I'm being overly analytical on this. And that's not to say I'm not going whatever I can to stay alive. But I was ok. I'm kind of ok with the cancer. But.....after we landed, they said they were keeping us on the plane, so mechanics could check it and determine if we could return to OC. I called Dr Phan to see how late I could get to his office for chemo. I was already late. He didn't answer the question, and instead told me to remain stress free. Umm ok.. kind of late for that. After 30 minutes they said they'd be taking us off the plane, the mechanics never showed, letting us get our bags and then they'd bus us to OC. WTF.  By the time we got off the plane it was approaching 3:30 and no buses were in sight.  Leslie called Phan again and he said I could wait a week to start the new cycle. No, no, no was my answer. Fuck the bus. It was cab time.  $75 dollars later I was at Phan's for day 1, after disregarding Phan's and Leslie's advise to calm down and wait a week.  I might have lost my shit for a minute or two, but it all worked out.

So Chemo Tuesday, back to work Weds.  Back to the daily routine, back to the daily stresses, worries and all that.  I had done lab work right before we left. At chemo day 2 yesterday, I got the results, but the key number was missing. The F'ing lab has done this before. It kind of makes my results useless without the UPEP number, which give me a percent of the protein that my body is producing that is bad protein.  On a side note...ate a lot of meat (protein) while in Colorado (TWSS) including Elk burgers that my cousin Heather's husband Will caught and made. Normally, I wouldn't eat that. But I did and it was darn good meat.

I feel pretty good. No worse for the wear after the 10k. Note that we walked and didn't run.  Two days of chemo back in the books. The steroid rage has hit pretty powerfully today. Going to try and work through it.

Tuesday, May 27, 2014

Saturday, May 24, 2014

Almost BolderBoulderTime

We're here in Boulder, Colorado. It's Saturday. Monday is the 10k. Some 50,000 are doing it. And more importantly, I've got 18 family members joining me. With money raised, we flew past the $7,000 mark and it's not too late to contribute. The funds go directly to research into finding a cure for Multiple Myeloma as well as finding new treatments.  I' m fortunate that I was linked up with Dr Berenson and the Institute of Myeloma and Bone Cancer Research, which is why I'm raising funds for the Institute.

 With me, I fly home Tuesday and then go directly to chemo.  That's myeloma. And here's the link if you're interested in donating.  

Sunday, May 18, 2014

Not So Fast

My previous post was about the woman with myeloma who apparently went into remission after receiving a massive dose of the measles virus.  Sounded pretty good, right?  Well not so fast my friends.
I've gotten a number of texts and email about this potential game changer. I was excited by it.  We talked to Berenson about it. As we know, Berenson is opinionated, a bit controversial and very sure that his way is the right way and so on and so on. He's also considered one of the top myeloma specialists in the world. That's right, the world.  Yesterday I went to a myeloma seminar put on by the MMRF.  Berenson was the program chair and spoke on a couple of different topics. A few months back, me, Leslie and my mom went to an LLS blood cancer seminar.  That was basically a waste of time, other than cookies at break time. Yesterday's conference was fantastic. I learned a lot. All the speakers were myeloma doctors and all focused on different topics. A couple of doctors made jokes about Dr B and his dogged determination to find a cure and about his steadfast opposition to the stem cell transplant. A doctor from the City of Hope spoke right before Dr B about transplants and as she was being introduced more jokes were made about getting her and Dr B in a debate on the merits of the transplant. Remember, before I saw Berenson, we did go to City of Hope, thinking I'd do a transplant. They denied me due to my kidneys. (and that is something to keep in my mind, when you hear tremendous numbers for transplants success rates (i.e. surviving the procedure) keep in mind that some places are quite selective about who they will transplant, not wanting to impact that percentage of success)  I'll listen to and follow Berenson anywhere.  He's performed a miracle on me.   I talked to a newer patient of Dr B who I had just met the day before in Berenson's office.  He lives in Vegas. His primary oncologist in Vegas actually dropped him when he heard that Berenson was his myeloma specialist. That's bullshit. 
Oh, by the way, Berenson isn't worried about my numbers. But he does want to me to continue on treanda. I handle it well enough so we're staying aggressive.  He also gave me an extra week off, so I will feel tip top for the BolderBoulder. And he was quite pleased with our fund raising success. If you haven't donated yet, you have one more week. It benefits Berenson's non-profit research institute. One more shout out to my recently reconnected with friend Suah. She's got perfect strangers donating to the cause.  That is also dogged determination. Here's that link
Our Designed by Leslie Team Goldman t shirts will be ready this week. In time for the 10k. Team Goldman will be properly attired. We've got 18 family members doing this thing, ranging from 6 months to 77 years. Very impressive.
My point is that we asked Berenson about the measles and he got more worked up than usual. His first words were "that's not science".  He wondered why they'd do this big publicity push when this hasn't been tested, published in a medical journal nor peer reviewed.  One patient does not make a new finding, he said.  Dismissed.  Conversely, there are a whole lot of new treatments options. Options that have been tested, vetted, and approved.  I appreciate people sending me message about the measles thing. But it's too soon to get excited. 

Wednesday, May 14, 2014

And it keeps rolling

It's Berenson week. Well, Berenson day this week. We see him Friday. It's the monthly visit.  I got my labs results today. Normally when I get my labs I can predict what Berenson will say. Stay on path, change path.  Last month I had a giant drop in my numbers. So for the past month I've been thinking I'd have a repeat. My numbers would drop, I'd get off of Treanda and back on to maintenance.  To top it off, I figured my numbers would drop so much, that I could put off chemo for an extra week, allowing me to feel 100% for the BolderBoulder. By the way, we've raised almost $5,000 with a week to go in our fundraising. Remember we're raising funds for Berenson's non-profit research group, the Institute of Myeloma and Bone Cancer Research. As we know, Berenson is one of the leading myeloma doctors in the country and is vital to the success I've had.

Anyhow, that's how I figured things would unfold.  Today I got my lab results. They all sounded great. Standing alone, they're good. But then I came home and looked at last month's results. And I didn't get the drop I anticipated.  Instead they went up. Don't get me wrong, they're good. But they went up. So I have no idea what Berenson will say.  Am I at a point where maintenance is next. Or do I do another cycle of treanda? Or....I just don't know. It's a mystery. Well, we'll find out Friday. The unknown of myeloma keeps rolling along.

But the key is I feel pretty good. I've been going to the gym on my lunch break. Energy is up. Blood count is good, almost normal. Creatinin stays low. All good signs.

Saturday, May 10, 2014

Ho Hum

Winding down on week one off of chemo.  It took until about Weds this week for me to feel normal. Normal=Good. I've got one more week off, then it is back to chemo.  There is a caveat here.  I'm doing my monthly myeloma labs today. Results Weds and Berenson Friday. I'm anticipating him taking me off of Treanda and putting me back on maintenance.  That's my plan.  Given how my schedule works, I'd be back on chemo May 20. However, we're going to Colorado for the BolderBoulder on the 23rd and the event is the 26th.  The dex crash and revlimid induced leg cramps are something I'd like to avoid while doing a 10k.  So depending on my results and depending on what Dr B says, I might delay my next cycle until May 27.  I hate..HATE...missing or delaying a scheduled chemo treatment. It's only happened a few times over the past three years and it's been fine. But the delay makes me super nervous. But, it's always been ok and I'm sure it would be this time as well. Again, we'll let Berenson chime in. 

Speaking of the BolderBoulder, we've got a couple of weeks to add to our fund raising total. I set the bar high for what I want to raise...$10,000. We're inching up to $5,000.  That right there is impressive.  I'm truly humbled, honored and floored by the level of generosity of so many people.  It's overwhelming actually. But it's also a great feeling. The money is so important and I'm fortunate to be able promote the cause.  And what's been even more overwhelming is that people I don't even know are donating. Friends of my Mom and my niece, Jacquie, have contributed.  Friends and family of an friend, Suah, have been super generous. Suah has really drummed up a lot of support and I can't even vocalize how much her support and help means to me,   And it's not too late, so here's the link to my donation page:

Today is the 10th of May. A week after my 3 year cancerversary. I'm cruising along.  But what next? I've written about this before. I'm thrilled that I am leading a normal life and am minimally impacted by the cancer. But I'm also wondering what's next. The routine doesn't always cut it for me. There needs to more. I work. I pay bills. I work out. I see friends.  All good. But let's look at work. I like my job. I try to kick ass every day.  But I've been doing the same thing for a while now. Let's mix it up.  So what do I do? Hell if I know.  If anyone has any lucrative, exciting job offers, that include a good health insure plan, let me know. 

This weekend the NFL draft is taking place. As I've said before I really wanted the Vikings to draft Johnny Manziel aka Johnny Football. The Vikings had their chance, but opted for a different quarterback, Teddy Bridgewater, who ought to be great in his own right.  I'm a little disappointed but optimistic as ever that the Vikings will be in the playoffs this upcoming season.

And that's all I got. I don't have much to write or say. I'm doing good, test results in a few days and we'll go from there. 

And lastly, thanks again to so many people who have donated.  It's awesome,

Sunday, May 4, 2014

The 3 Year Cancerversary Meal

Here are some photos of my celebratory meal.  Now it's back to the serious eating program and dropping some pounds before the BolderBoulder.

Friday, May 2, 2014

3 Years and Counting

Pizza for my amazing nurses

Iv for me

3 Bleeping Years

We made it. 3 years since my diagnosis of multiple myeloma. How am I going to celebrate? With the gym, acupuncture and chemo today.  Maybe add in some ice cream this evening. Oh and I am taking lunch to Dr Phan's office today. The doctor and nurses are absolutely amazing. They're part of my team and part of my family. I feel like I'm thriving so the plan is to keep this going. Thanks to everyone for the support, words of encouragement, prayers, and all that.

Below is a photo of Blair Walsh, kicker for the Minnesota Vikings. As a rookie in 2012 he set an NFL record of ten 50 plus yard field goals in a season. 3.

Thursday, May 1, 2014

Couple of Things to Share

Pat Killingsworth is one of the first myeloma survivors that I spoke with and he is a bit of a role model to me for his positivity and honesty. Pat recently relapsed. The following link is a recent post from Pat about how myeloma has changed his life and how he can't remember life before myeloma.

The second thing I want to share is something from my buddy Brad's daughter. Brad and his family are really an inspiration for me. They're strong, united and so darn cool.  When I am trying to decide on something, I think "what would Brad do" . Be decisive and don't look back.  Ava is Brad's daughter and this is some Flava from Ava.

LLS Webinar Multiple Myeloma Know Your Treatment Options

June 19, click here to register