Thursday, May 30, 2013

The latest from Life, Interupted

As most of you know I follow a blog on the New York Times, written by a young woman, Suleika Jaouad, about her cancer journey as a young adult.  It's great writing and very honest writing. This week her entry was a video. I suggest as necessary viewing.  It's short, maybe 6 minutes, so follow the link below.

ho hum, another day

It's Thursday. Tomorrow I'm off work. It's acupuncture tomorrow.  Today and this past Tuesday, I rode to work. That's 2 out of 3 days, another milestone in my recovery. I feel great. My blood counts have been hovering just below what's normal, so I'm sure that has much to do with my energy.  And because my blood counts are up, I don't get a procrit shot this week.  Thus, it's a week without a single medical related appointment. How great is that?!

My creatinin this week is 3.63.  It' just above my record low which is 3.61.  I really want it to dip under 3.  Thus the acupuncture. We focus on the kidneys with the my treatment and I believe it helps.  I've added to my diet a little bit, so it's good to see that it's not putting extra stress on the kidneys.  The big thing is that stable kidneys translate into stable myeloma.  3.63 means everything is good.  Next week is chemo, then it's 24 hour urine, then it's Berenson. That's the pattern.

Wednesday, May 29, 2013

Motivating Post From Fellow Myeloma Patient

Pat Killingsworth is a fellow myeloma patient who I've gotten to know over the past year or so. His attitude and approach to myeloma is positive and motivating.  Here is his latest post on the subject and staying diligent and focused.......

Yesterday I described an imaginary journey I had concocted while walking with my wife and dog the evening before:  I had fantasized about how I would still alive after 11 hard-fought years.
Unlike more common fantasies like winning the lottery, my dream could actually become a reality.  Winning a sweepstakes or lottery involves a lot of luck.   The numbers aren’t as daunting, but I would also need a bit of luck in order to live until I’m 68 years old.  But we’re learning there are some things we all can do to improve our odds of living longer with multiple myeloma.
In order to scratch and claw my way toward making my hard earned, 11 year survival fantasy a reality, I will need to take charge and change my lifestyle; dump the diet soda, avoid processed foods and cut sugar from my diet.
But simply cutting-out some of the bad things from my diet won’t be enough.  I need to replace them with foods that are rich in nutrients and antioxidants.  And I need to increase my consumption of helpful supplements like curcumin and ursolic acid, especially on chemo days.
I should exercise more and stress less.  I need to get more sleep and meditate daily.  I can’t neglect the rest of my body!  Seeing an oncologist every month isn’t enough.   Just because my myeloma is under control doesn’t mean my heart is strong.  I need to see my general practitioner regularly.  No way I want to survive multiple myeloma, only to die from an unrelated cause before I reach my 11 year goal.
Keeping this in mind, I need to also remain vigilant about my risk of developing secondary cancers.  I’ve already been diagnosed with and undergone surgery for melanoma.  I will need to do my best to avoid allowing another cancer to jump-up and bite me.  A multiple myeloma patient’s risk of developing prostate, colon or some other form of cancer is higher than most.  And the possibility of developing MDS or another blood cancer are significantly elevated, all thanks to years of ongoing chemotherapy.  Hopefully my incredibly healthy, high fiber diet can help counteract some of that risk.
And I shouldn’t forget to add hope and a positive attitude to my list.  Although data about this is mixed, common sense tells us that being hopeful should be an important part of any cancer patient’s long-term survival plan.  So is getting help if one becomes sad or depressed for any extended period of time.
So if my mood tumbles down and I feel low for more than a day or two, I need to speak to my social worker and seek-out a therapist who has experience working with cancer patients.
But today my hip feels good, my myeloma is under control and now I’ve doubled-down by adding an 11 year survival plan to the mix.  And Pattie and I have once again started planning for our future together.  Feeling depressed is the farthest thing from my mind right now.
The anticipation of exploring exciting possibilities helps me feel alive!  One more important part of my 11 year survival plan.  I’m convinced that feeling productive and having a purpose for living is vitally important, too!  We all need a reason to get-up and get-out of bed in the morning.
tropical viewSo, have I helped motivate you to set a goal and join me on my quest to beat the odds?  Let’s all agree to get together and share our goals and swap multiple myeloma war stories sometime in the future.  Pick a date and time–along with a dreamy tropical location–and we’ll all meet there for a fun weekend.  We can enjoy some down time, watch the sunset and help motivate each other stick to our long-term survival plans.
How about sometime in the winter of 2020?  That’s a nice round number!
Feel good and keep smiling!  Pat

Tuesday, May 28, 2013

And then frustration set in....

Not much to report, although low on patience with the whole myeloma package. Today it feels like a bunch of bullshit. But I continue to feel good, so that's key. 

Friday, May 24, 2013

Friday Commute

Year 2, Bonus Day 22 since #myeloma dx. Day after chemo. #GoingOnFeelingStrong #Beck #FocusMatt

Tuesday, May 21, 2013

Is Myeloma a Gift?

Funny question. Even an absurd question. Myeloma sucks. No question about it.  Cancer sucks. It's some real bullshit what folks have to go through.  It's not right, not even in the least bit.

But to be truthful, it has been a bit of a gift. Yes, there are times that I'd like to send that gift back. But I don't have the gift receipt, so I'm stuck with it.  However. other times, it's not such a bad present. I'm pretty happy. Happy with my progress. My treatment is fairly routine. It's chemo sure. But not a big deal.  The goal is to keep me exactly where I'm at.  Every month, I wait impatiently for my major lab results, hoping that the cancer is still in check. So far, it is staying quiet. 

Physically I feel great. As good as I've felt in years. I'm 51, so there's a natural decline in my fitness.  But having to be diligent about my health and fitness actually has me in the best shape I've been in for probably 5 or 6 years. Other than the cancer, I'd say I am pretty darn health.  My weight is down to 190. Lowest in ages. I'd like to be 180. Then I'll truly be lean and mean. I'm not fucking around with this. I got married, have a happy home. I'm closer with family, I'm more honest with folks, I'm over my horrible fear of public speaking, I'm confident in who I am.  All good things. So despite the fact that myeloma does suck, it has been a bit of a gift. Weird to say, but true.

When first diagnosed, people would say to me that good will come out of the diagnosis. I thought they were all crazty. I could not see a single benefit from having an incurable cancer.  How I have learned. Those people were right.  I don't want to go overboard with the myeloma is a good thing line of thought though. Because that's just ridiculouus.  And obviously I am writing at a time that I am doing fantastic. If things turn, I might not think this thing is a gift. But who knows. Who knows what'll happen any day for any thing or any one.

Bonus time. I'm on bonus time and enjoying it.

Thank You from the LLS and the Folks at the Big Climb

I got this letter yesterday.  The Big Climb raised $1.76 million for blood cancer research and patient aid.  To everyone who supported Team Goldman, I extend a massive thanks. This letter is really for all of us.

Monday, May 20, 2013

The week of May 20

Hello all, Truly not much to report. Had a great weekend with family. This week it's back to work. Thursday I start the latest cycle of maintenance chemo. I did lab work last week at the kidney doctor's office. Haven't heard the results yet.  And that is all.

Thursday, May 16, 2013

Monthly Check Up

Today was my monthly Berenson visit. All went well. Creatinin is at 3.65. Bloods counts are doing good. We stay the course. Berenson continues to be happy and a little amazed with how well I am doing....considering where I was. He called me a miracle man, given the amazing improvement of the kidneys.  He also said that just in the two years since I was diagnosed, there are a whole bunch of new myeloma drugs. So if maintenance were to lose its effectiveness, we have a lot of options. I told him I feel great and plan to be around another 30 years. He mentioned he recently saw a patient who has been coming to him for almost 30 years. All good news.

On June 20, I am hosting another Cure Talk discussion. It's about stress...managing and the impact of it. I invited Dr B and he said he can do it. I need to coordinate with his office. I've also likely got Don Baylor lined up, so it ought to be a great talk.

Also made a brief visit with my kidney doctor. I usually see him every two or three months. But since we've branched out on the diet, I went sooner than usual. More thumbs up from the kidney doc. I am doing great and again I keep doing what I am doing. Oh one other note about the Berenson visit. Because my kidneys are improving, I have an even greater number of drugs options....if needed. A lot of chemo drugs beat up the kidneys, so with failed kidneys I would have fewer options. But with my improved kidneys, there is a greater variety of potential future treatment options. Note that we temper my current drug mix partly based on what my kidney can handle. And there are drugs, even over the counter stuff, that I need to avoid completely, so as not to harm the kidneys. For example....ibuprofen is off limits to me.

Tomorrow is Friday. It's bike to work month. I rode in on Wednesday and will ride again tomorrow.

More Easy Reading...

Suleika Jaouad's Latest....

Saturday, May 11, 2013

another milestone

Did it. Today was the annual Tour of Long Beach bike ride. 31 miles. I did the ride about 3 years ago. Obviously I've missed it the past two years. I wasn't sure I was going to do it today.But I figured what the heck. Let's see what happens. And it went good. All 31 miles and not really worse for the wear. Plus it is just two days after chemo. We can do it. And we'll keep doing it.

Friday, May 10, 2013

Change, Change, Change

It's been a quiet week on the blog front. Not too much to report.  I had chemo yesterday. Day 15 of the latest cycle of maintenance. Now two weeks off from the chemo drugs. Although, to be clear, most home meds I take aren't part of the two week break. 

My blood count is up over 11, so no procrit shot this week. That's a little bonus.  Talked with Dr Phan briefly. He didn't have much to say. All is good. He did predict that my creatinin will be down another point over the next couple of months. Currently it's at 3.8. Let's hope he is right. I've been adding a few things to my diet, which is nice. We'll see the kidney doctor next week and see how I'm doing with the diet change. I imagine, it's all fine.

Tomorrow is the annual Tour de Long Beach bike ride. Obviously I haven't done it in the past couple of years. But I'm doing it tomorrow. 31 miles. A little nervous about the distance. But as my niece Destiny called me, I am an efficient turtle. I'm slow but I keep going. So despite the nerves I'll be fine.

This week I've been doing a whole lot of writing at work.  There is a real distinct, brief and non-creative style to work writing. Doing this blog is a welcome relief. I can write anything and in any style that I prefer.  I can ramble on and on about nothing or whatever is on my mind.

I've also been thinking(not obsessing, a welcome change) about changes brought on by  the myeloma. Not physical changes. But changes with me, with my lifestyle, with relationships. So much has changed. Obviously.

Not sure folks remember, but when I first started this blog, I was concerned about a couple of things. One was whether I'd survive. The other was whether for the rest of my life that my identity would be as a cancer patient  Either option really seemed to suck given my perspective at the time.  Myeloma is funny. Even people with complete remission are doing maintenance (not everyone) and worry about the cancer coming back.  For me, I have partial remission. Maintenance is working like a charm. But most likely, the myeloma will adapt and I'll have to switch some day to new drugs and fight to get the myeloma back under control.

We all deal with these things differently. My approach was to circle the wagons. I wanted a tight circle focused on my health. That was what worked for me. I wanted others for support, but that's about it. Sorry about that. But I'm the quarterback and I call my own plays. I've talked a lot in this blog about my pre-myeloma life. I've voiced regret, guilt and done a lot of  unproductive looking back, with lots of what ifs. Pre-myeloma I liked my personal, quiet space. I've always wanted to insulate myself. But when I wasn't in the Matt mode, I liked to share my time with others. But I liked to be in control of when that shift happened.   Cancer changed that. Cancer changed me.  The circling of wagons meant that we had to take some drastic immediate steps to build the wagon train around me. Like in Butch Cassidy and the Sundance Kid. They knew they were surrounded by the Bolivian army. But they decided it was the two of them against the army. They got to that point together and would fight together. In some respects, that's what Leslie and I did. We chose a path and that was our focus. Going to Berenson was a tough one. He's unconventional in the myeloma world. Although that is changing somewhat, given his myriad successes. But I liked his approach. I liked his complete life philosophy. And that's what I have.

I had to change and limit input from others. I'm sure it was hard for folks to understand. I get that. It's hard to explain, but that is what worked for me. My open door policy went out the window. Do I miss it? Yes. Was it necessary? Yes. I'm still here. Leslie stepped up hugely to be my caregiver. Massively. She possesses a caring and strong spirit. Before all this I don't think I was clear on what commitment to a relationship really meant.  I know now.

I'm flawed, but I think I have some decent qualities. None of us is different in this regard.  The old Matt would only focus on imperfections. No more. But I think that is why I carry so much guilt and regret of my pre-cancer years. I was angry and mad. Before cancer. I'm was pretty intolerant of what I saw as imperfections. Hard to explain this. And it's hard for me to accept my past given my new life view.  Everything is in context. Things I did before were based on what I knew at the time. I still don't know a whole lot, but I know a few more things now.

I've changed. I've changed for the better. My worry about dying is gone. Perhaps just for  now. If the myeloma were to kick in, I might be fearful again. But probably not. As I indicated on May 2, two years was my goal, my finish line, my touchdown. It's all bonus now. I'll always fight this thing, but whatever happens, happens.  And with being identified from now on as a cancer patient, I'm ok with that also.  I'm proud of my fight and my gumption. I''ve learned a lot about myself. I've learned a lot about others. I've met some amazingly strong people. Patients, doctors, nurses.  People I never would have met if it weren't for myeloma. Cancer is who I am and that's ok.

Having said this, I still have a desire to live right, to do a good job and to succeed. I'm not becoming a meth manufacturer a la Breaking Bad. But I must have meaning as an aspect of all things I do.  There are days when I'd like to shut it all off and crawl into my cocoon or cozy up anonymously to a bar. But overall, that's not my mindset.

Curiously all these things make it tough to reconcile the circling of the wagons. I miss being footloose and fancy free. But then again I don't miss it. I like living and this is how I do it. Will things change going forward? Will I change more? Will I change back as time goes by? Heck if I know. I'm just enjoying my bonus days.

Monday, May 6, 2013

Day 5 of Bonus Time

It's Monday, I wrapped up a four day weekend celebrating my two year anniversary (aka cancerversary) of my diagnosis.  I had a few people say to me "congratulations" but then they'd all follow up with the question if saying congratulations is really appropriate. It is cancer we're talking about. But I tell them that yes, congratulations is absolutely appropriate. As I've said before, I'm going to continue fighting this for decades to come.  But, a part of me does feel like I crossed a major milestone. I made it past two years.  That is definitely worthy of congratulations.  Going forward I still need to figure out what is next. But that's another story.

Thursday I am back to chemo. I did basic labs on Saturday and my white and red blood counts are excellent, both floating around normal range. Creatinin is at 3.8, hovering around what it has been for a few months. Any day now, it'll drop some more.

Suleika Jaouad's Latest From NY Times

Recommended reading.  It's always interesting to me, the similarities in emotions, fears, and thoughts of so many cancer patients.  Suleika writes honestly about her thoughts and process dealing with cancer......

Thursday, May 2, 2013

Two Years. Day One.

Today is the day. Two years since my diagnosis. It's also Day One. Every day from this point on is a bonus. Look out.  I took today off from work. Gracie and I went on a long walk. I went to the gym. Next Leslie and I are going to get a good breakfast. Then we're taking ice cream and treats to Dr Phan's office to thank them for all they do. Ice cream is something I've had to avoid, due to the kidney, but today I'm living it up. 

Going for walks with Gracie has been good for me this whole time. It gives me a chance to think, to motivate, to pep myself up. Last night and this morning, I was feeling a little odd. I've been excited all week for today. But here it is, and I woke up feeling like " what?" I can honestly say that when I was diagnosed I was aiming to get two years of living in. That was my target. Two years has flown by. Now my target is another 30 years. But! I'm good with whatever. I'm not saying I'm not going to fight and battle and keep on keeping on. Oh, I am. I am lean and mean and ready to kick myeloma's ass some more. But I do think my conflicted feelings were partly due to the fact that in a way I crossed my finish line. This was my goal. That's why today is not only my two year anniversary, it's also the first day of everything else. I'm not f'ing around from this point on.

Berenson likes to say that this is a marathon, not a sprint. Very true. But I think in some ways, I'm not a marathon person. I'm more middle distance. I have some speed, some stamina and some resolve to handle the pain. I'm like a 800 meters runner. Well, 800 meters nowadays is like a sprint. Let's say I am a miler. A 1500 meters person. Some speed, some power, some stamina.  It's a track analogy yes, But I actually have a real story about my near marathon experience.  Many years ago (a lifetime ago) I liked to run. I ran a lot. I was training for the LA Marathon. Two weeks before the marathon, I did a 21 mile training run. But I ran with some experienced marathon runners for that training run, and they ran at a crazy pace. My ego forced me to try and keep up with them. I did for the first 15 miles, but then I crapped out and slowed way down. But the damage had been done, the fast pace had exhausted me and the last 6 miles were absolutely miserable. At mile 17 my love for running switched to hate. I hated those last few miles. Two weeks before the marathon, I decided screw it. I'm not running any more. No LA marathon, no jogs, no nothing. And since that time I've run maybe 8 times.  A few years back I thought maybe my positive feelings for running were coming back. I tried a couple of short jogs. But my knees and ankles and hips and foot all hurt. Old age had creeped in. I don't have the ideal runner's body to begin with, and my running form is sub par. So for me, running beats up the body too much. I'd like to try again, but I probably won't. Better to just avoid the extra aches and pains.

When I was first diagnosed, I read about a man in his 70s with myeloma who had a goal of running a marathon in every state. That is his way of staying ahead of his myeloma. I've come to be acquainted with this hero through twitter. I believe he has accomplished his goal. He's also a pretty active spokesman for cancer and myeloma research. Pretty impressive guy. I like these success stories.

I brought treats to work yesterday to thank my co-workers for their support over the past two years. Work has been a nice escape for me. A slice of normalcy. I've been back to working full time for many months now. Yesterday was one of those crazy busy days, where it's meetings after meetings. Issues after issues. I don't mind though. That stuff doesn't stress me out.

I'm taking today off to celebrate my milestone, but I actually feel a bit guilty for missing work with so many issues dangling. But they will be there when I return on Monday. I figure I deserve a celebration day.

When you're first diagnosed, you read a lot of stuff. You scour the internet for information about your disease. So when I did my reading I kept seeing the word "incurable" and I kept seeing stories about people who lasted two years with myeloma. Lucky for me, and many others, treatment has advanced a whole lot in the past few years. For many of us, it's treated as a chronic disease as opposed to a fatal disease.  I do maintenance chemo. I get asked fairly regularly how long this will last. I say indefinitely. I'll do this chemo regimen as long as it keeps me stable.  I feel great and am living a pretty normal life. Pretty amazing considering where I was.

So what's next? It's like my marathon training. I was ok with not doing the LA marathon because I had done the training run. I knew I could do it. I just opted not to. I'm confident that I can beat this myeloma. I've made it to two years. But unlike my marathon training, I can't slow my pace. I can't stop. This pace is it. The diligence. The listening to my body. The being thoughtful about what I do. These are all constants. These all carry forward, despite the fact that I broke the tape with my two years accomplishment.

But I am formulating some plans in my head. I'll create a new target, a new finishing line. And dominate on my way to the line.

I do want to thank everyone who has been part of this journey. The support of family and old friends and new fiends has been powerful. 

Did you know that Bid Laden was killed the same day I was diagnosed. Over the past two years, planking and tebowing have come and went.  The Vikings have sucked and became good again. It's been a rapid paced two years. And here I am.

Wednesday, May 1, 2013

May 1. One day till my new birthday

The celebration begins today. I am going to work but I doubt I will be productive. It's been real hard to focus this week. I am taking with me an awesome assortment of cookies from the local deli. I want to thank my co-workers who have supported me and donated their sick time to me.

What a ride!

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...