Tuesday, March 24, 2015

Cruising through another cycle

Wrapped up another cycle of maintenance today.  That means insomnia, crazy energy, followed by a crash. That's my next 3 or 4 days.  Later this week I'll do my monthly 24 urine collection. Results middle of next week, followed by a Berenson visit.  My blood counts are hanging in there. No procrit this week.

Last month, after Berenson's visit, I saw a new kidney doctor. I hadn't been in nearly 10 months to any kidney doctor. Probably too long...but also a sign that my kidneys keep on hanging in there. Because it was a new doctor, he wanted me to get a kidney ultrasound, so he can see how they look., i.e. blockage, etc.  Last week I had the ultrasound. I tried to get a picture of my kidneys on the machine, but the nurse told me that isn't allowed. She said it's now the law and even expecting parents can't a copy of their ultrasound. The funny thing is she blamed it on Tom Cruise. She said that when he was married to Katie Holmes and she was pregnant, he bought his own ultrasound machine. And to protect the output, he lobbied the state to change the law about the sharing of images from ultrasound. "look it up" she told me. I haven't yet, but perhaps tonight while I'm not sleeping, I will look it up. Sounds a bit doubtful to me, but you never know. Anyhow, the result is that I couldn't get a photo of my own kidneys.  Dr Phan today told me that he saw them and everything looks good, nothing to worry about.

Also right now, we have March Madness going on.  92 people are playing in Blood Cancer Madness Pool and have done brackets.  The beauty is that half the funds go to the Leukemia and Lymphoma Society.  Next year, I'd like to get 200. This weekend I did an MMRF 5k in San Francisco. My mom was going to walk with me, but wasn't feeling 100% , so I went alone. On the walk I met a woman who lost her husband to myeloma in 2011.  We walked and talked, she was very nice. She was telling me how much the LLS did for her and her husband in terms of paying for travel and expenses when they needed to travel to see other myeloma specialists.  This weekend was also the Big Climb in Seattle. Obviously I didn't do it this year, but I have done it in the past and it also supports the LLS.  There are so many great organizations out there. Fund raising is tough. I try to do one event a year, but years come around quickly and I start to feel like I'm bugging people. That's what nice about using March Madness as the fund raiser. People love doing brackets, they can win money and money goes to the LLS. Win, win, win.

Just finished up a Caesar salad and matzo ball soup. A post chemo tradition. Soon I'll doze off for a couple of hours, then I'm awake for the next 24 hours or so.

What else? We're going to Albuquerque next month. Yes!! For you Breaking Bad fans...how great is Better Call Saul?  Very great.  Watched The Interview while doing chemo today. Super funny. I was LOLing right there in the infusion room.  Friday is UCLA vs Gonzaga in the sweet sixteen. Go Bruins!!

And don't  get me started on the Adrian Peterson situation. Argh.

Not sure if folks follow my friends Brad Coustan and Pat Killingsworth. Both are facing challenging times with their myeloma. Both are persevering and are taking the disease head on.  Another friend, Dan is doing hospice, having run out of options.  I've exchanged a few emails with him over the past couple of months. The way in which he and Tib, his partner, are handling this is truly beautiful.  Sometimes it just feels like words when I try to express how I feel about these friends. But believe when I say, I'm moved by them and am lucky to know all of them.

And that's about it.  I'm feeling good. Numbers holding steady. Everything is fairly routine.

Thursday, March 19, 2015

Last Call for March Madness

Brackets need to be done by 9 AM west coast time, today Thursday March 19.  My goal was a 100 participants.  Up to 91.
 
So I am making one last push. Just $10 per entry. Money is split, with 50% going to Leukemia and Lymphoma Society and 50% going to 1st, 2nd, and 3rd.    w And feel free to share this with anyone who might be interested. Just follow the below link.


https://yho.com/tourney?g=17401&k=a2a5c653b00ec14d

Sunday, March 15, 2015

Blood Cancer Madness 2015

It’s that time of year again, let the March  Madness begin, please consider joining in on the excitement. Cost is $10, half the money goes to the Leukemia and Lymphoma Society,  the other half goes to 1st, 2nd and 3rd place winners.

Last year, we raised over $1,000 for the LLS. I'd love to surpass that number this year.

The actual first round is Thursday March 19 at 12:20 EST, so picks need to be in prior to tip off.

You can send checks or cash for your buy in to me at: Matt Goldman, 2137 N Studebaker Rd., Long Beach , CA 90815 or paypal mattgol@gmail.com.

Group Name is Blood Cancer Madness 2015, password is: bloodcancer.

The link to participate  is below, you also have to join Yahoo sports, which is no big deal.

The more people or entries the better, a great cause and a fun time of year! Just le me know that you are participating, you can join multiple times but each entry is $10.
 
 

Wednesday, March 11, 2015

My Myeloma Recap

Yesterday was the start of Cycle 5 of my latest maintenance.  Both Doctors Phan and Berenson are happy with how I'm doing. I'm happy with how I'm doing. Leslie, my mom and Gracie are happy with how I'm doing. We're all happy. I'm approaching 4 years since my diagnosis.  With the approaching milestone, I thought it would be good idea to recap what's happened and what's happening.

Ready? Here we go.

I was diagnosed May 2, 2011 at the ripe age of 49. (note this is the same day that Bin Laden was killed, which I had no idea about until a few days later) For about 3 months leading up to this date, I was fighting horrible fatigue, daily fevers, and night sweats.  I used to ride my bike to work every day. 10 miles each way.  I was having huge problems catching my breath while riding. I was totally unaware that I was living with severe anemia, hence getting oxygen to my system was tough. For 3 months we tested me for an assortment of ailments. Never once was cancer mentioned or considered. Eventually I was hospitalized, we did a bone marrow biopsy, saw my kidneys were on the verge of failure and BAM we had myeloma. I'm Kappa light chain myeloma but can't remember if I have chromosomal deletion.

Dr Phan was the oncologist on duty while I was in the hospital, which is an amazingly fortunate break for me. Couldn't ask for a more caring, communicative doctor.

Note that yesterday, there was a new nurse at Dr Phan's office. A male nurse...my first one in four years.

We started me off with Velcade and dex. MM got worse. We added doxil. Didn't work. MM got worse. We dropped doxil and added thalidomide. Didn't work, MM got worse. At this time, Phan sent me to Berenson. Berenson wasn't messing around and put me on treanda and added a second oral steroid, medrol...at the time a rarely used myeloma chemo drug. But we had to do something, or as Dr B said, I'd be lucky to see the end of 2011. We saw fairly immediate results. Numbers started dropping after one cycle. We did twelve cycles and then went on to maintenance for about a year and a half.

Also note that in the interim, I went to City of Hope to discuss an autologous stem cell transplant. They wouldn't touch me however, given my poor kidney function. Keep that in mind, when you see success rates of transplant facilities....they may cherry pick patients to boost the odds of success. 

Berenson is quite and not quietly anti transplant.  I'm fairly entrenched in his camp given my success. I did harvest my stem cells just in case and they are frozen away at Cedars Sinai.

Another note, I've only been kidney impacted. Even today my bones are good. I make sure I do weight bearing exercise regularly to keep the bones strong. so far so good. Fingers crossed.

Also in the interim I had a kidney doctor that wanted me to start dialysis.  I wasn't symptomatic of failed kidneys.  But with creatinine over 8, she said it was time. I got a fistula in my left wrist. Before that she refused to take out a crazy catheder that was hanging off my neck allowing me to do plasmaphersis...a crazy machine blood cleansing that was the precursor to dialysis.  Appointments with her were doom and gloom. Her tone was basically that I was going to dye. F her. To this day, she is my least favorite doctor I've had. Another reminder, you can drop any doctor you want if you aren't feeling a connection. I dumped this kidney doctor.  I got the fistula, but opted to not do dialysis. From my perspective, the kidneys still worked.

Leslie and I saw a few different nutritionists to get me on a kidney friendly diet.  Now we have my creatinine down to low threes. Out of "failure" range. I've been able to avoid dialysis and add certain foods in moderation to my diet. As along as we keep the myeloma under control, my kidneys will keep working. I also do acupuncture and focus on the kidneys with that.

Last year, I had my first relapse. We caught it early and put me back on treanda. 8 cycles later we had my numbers down to an acceptable range. For this past 5 months I've been back on easy breezy maintenance.

Fast forward to today.  Nearly 4 years in. Doing good. Mentally it's still a challenge though.  I work full time, I work out regularly. I got married. Life is fairly normal. But, I think it's important to mention the following:
  • I still do chemo once every two weeks.
  • I see a doctor for some reason or another at least once a week.
  • I get weekly procrit shots (if needed) to help my blood counts.
  • I do lab work twice a month. Because of my fistula, I can't use my left arm for blood draws. We took my first port out a while ago because it might have been infected. So infusion and blood draws were all in my right arm. Those veins eventually stopped working. So I got a new port and now I have to go to Phan's office for biweekly blood draws. Makes the effort a bit more time consuming as opposed to just going to the lab. Saw a new kidney doctor last week and he wanted his lab to get some blood. It was a real bitch and took several tries to get blood from the right arm.
  • I have energy and mood roller coasters from my biweekly dex. Adds to the challenge.
And that's it. I'm happy with my status. I'm happy with me. I was told I'd become a better and happier person through all this. I laughed 4 years ago at the thought. But it's very true.  But challenges are still there.

I've met some amazing people over these 4 years and made some life long new friends. I've also lost some friends. And I continue to watch friends struggle mightily. Inspiration though is gained from all these people. Everybody is strong and focused and dedicated.  I do my best to emulate them.

Thanks everyone who has supported me all this time and thanks for understanding that I'm living a new normal. New but not necessarily better or worse. Just different. What choice do I have?

Saturday, March 7, 2015

3 Years, 10 Months, 4 Days. A Day in the Life of MYeloma

Full day yesterday. It was a day off from work, but busy nonetheless:

5:15 AM     Wake
5:30 AM     Walk Gracie
6:20 AM     Gym. 20 minutes upper body weight bearing exercise for bones. 20 minutes cardio
7:30 AM     Home, shower
8:05 AM     Get donuts for Dr Phan's office
8:20 AM     Procrit shot at Dr Phan.  Hemoglobin was 9.0. Low.  First procrit shot in a month
9:15 AM     Hour drive to West Hollywood for Dr B.
10:20 AM   Monthly Dr. Berenson appt.  All good, pleased with everything.  Total 24 hour protein 1,062.  Upep paraprotein 47%.   Kappa light chains 42.  Give research blood
12:00 PM   Breakfast for Lunch. Smoked Salmon Benedict. Leslie had Eggs Florentine
1:00 PM     Appt with Dr Froch, new kidney doctor. Give blood, urine, schedule ultrasound. Creatinine 3.48. All good
2:20 PM     Back in car for drive home
4:20 PM     Arrive back in Long Beach. 2 hour drive. Stop for early dinner. 
5:30 PM     Home. Walk Gracie
8:30 PM     Sleep




Monday, March 2, 2015

46

Today is 46 months since my diagnosis. Wahooo. Feeling good. Berenson later this week and we'll know how I'm doing. Expecting two thumbs up.