Friday, October 25, 2013

Monthly 24 Hour Collection

Today, a Friday and the day after chemo, I am at work. I'm doing my 24 urine collection today, so my container is here at work. I keep it in a cooler and once in a while am asked why I'm taking my lunch into the restroom. Tomorrow I turn the pee in, give some blood, and wait for the results, which I should get by Tuesday or Wednesday next week. I'm not into predicting my monthly lab numbers. But this time I will. I predict my total protein will be 1450 and the upep (or bad protein) will be 48%. Both would be welcome improvements over last month's increases. 

Yesterday's Chemo


A recent post in the New York Times about chemobrain, written by Susan Gubar

Thursday, October 24, 2013

A day in the life of my chemo

Today was the final day of cycle 17 of my maintenance chemo. Maintenance is an infusion of velcade and dexamethasone, with revlimid and medrol taken at home. Every other Thursday afternoon is chemo. I work in the morning, go the gym, go home to eat and then chemo. That's what I do and I stick with it. I need consistency. I want no changes or surprises in my treatment routine. Two Thursday treatments equals one cycle. If you add up my maintenance treatments and all the prior chemo regimens I've done, you get a grand total of a heck of lot of treatments.

My friend Brad recently wrote that he used to have friends come with him to treatment, but now he often goes alone. He works, reads, relaxes. He was diagnosed about 11 months ago. Anyhow, it's the same with me. Leslie used to go with me to every treatment. But now I often go alone. I'll read, watch a movie, sometimes work, sometimes naps. My treatment is short. Roughly two hours.

Mind you, when I was on the heavy duty chemo, I needed Leslie to come with me. With my Treanda chemo (treanda being the drug that got me to partial remission) I'd get a massive dose of benadryl that would waste me. And I do mean waste me. I'd be messed up.  The benadryl was to ensure I didn't have some sort of allergic reaction to the chemo drug. If I were being honest, I'd admit that I actually liked the benadryl. It would put me in this half dream, half awake state where I knew I was in my doctor's office, but I'd have all kinds of activity taking place all around me. It was almost hallucenogenic. Those chemo treatments were longer than my maintenance chemo. The treanda chemo took 4 to 5 hours. I watched a lot of movies over and over during those times.  But by the time chemo ended I needed Leslie to drive me home, because I'd be passed out. I'd crawl into bed and sleep for a few hours, and then would wake up super wired from the dex.

I used to have a port a cath also known simply as a port. It's a catheter like thing under the skin just below my collar bone. It was used for my infusion. A special needle would go into the port. Painless and easy. It shows as a lump just below the collarbone. I had my port for almost two years, but it started to get irritated and painful, as I got more active. I had to be careful with it. We ended up taking it out, just in case it was infected. An infected port can be a problem. It's a nice psychological break being rid of the port. Getting it taken out  made me feel like, hey I'm not doing bad if I don't need a port any more.  I wouldn't be feeling that lump on my chest, which naturally reminded me that I have myeloma.

So now I do my chemo the old fashioned way. Needle in the hand or arm. Also not too big a deal.

Today as I walked in to Dr Phan's office, I had a feeling that it all was so surreal. I have cancer. That alone is crazy. I feel absolutely great and wouldn't know I have cancer except they tell me I do. But the thing with myeloma is you have to do maintenance chemo to keep it under control. Some patients can be drug free for some period of time. But most are on maintenance programs similar to mine.  Eventually the myeloma becomes immune to the maintenance drugs and a new fight might begin.  It can be months, years or even decades before myeloma returns.

Again I say, it seemed so surreal today. I've been doing chemo for nearly two and half years. 30 months since my diagnosis. Really? Wow. That seems insane and it was a lifetime ago that I wasn't doing chemo. How did this become my routine? I wondered if perhaps I'd wake up from this bizarre chemo dream.

I love Dr Phan and I love my nurses.  They're like family. I only see them every other week, so we always do a lot of catching up. Brad also mentioned that he does chemo in his own infusion room. At Phan's and Berenson's offices there is a common area, where infusion chairs line the walls. Phan has 6 chairs and today there were two other patients. While I don't do infusion at Dr B's office I am familiar with his infusion area and he has nearly 20 chairs, usual at 80% capacity. All myeloma patients.  When I was doing the heavy chemo, I'd be in for treatment twice a week, every week.  I got to know a bunch of patients. Phan's a hemotologist, not a myeloma specialist. So at his office, there is a variety of cancers present.

Today I read a bit of Slow Getting Up by Nate Jackson, about his time in the NFL.  I also tweeted and texted, and even got a short nap in.  For a snack I had some animal crackers.

Depending on my hemoglobin counts, I may or may not get a procrit shot to bring that number up.  Today was a procrit day. It's a shot in the belly. Usually it doesn't hurt. Occasionally it does, and oh boy when it hurts, it really hurts. It's maybe a 15 second shot.

Chemo wraps up and I/we always get some food afterward. The dex (steroid) makes me fricking hungry (in addition to making me wired).  Today it was Pollo Loco, one of my favorites. I'm still in this odd dilemma where I don't want to eat any animal. But I haven't stopped yet. Some of it is due to my crazy kidney diet that won't allow me to get sufficient protein through other sources i.e. beans, soy, nuts. 

Today was chicken, cole slaw and rice. I've now eaten, I'm home and I can feel the dex kicking in. Insomnia tonight.

And that concludes my chemo discussion.

Monday, October 21, 2013


New low for creatinin. After last month's scare, this is fantastic. Later this week, we'll do chemo followed by 24 hour urine. When I see the protein numbers, we'll be able to say for sure no cancer progression. Hallelujah!

Friday, October 18, 2013

IMF Webcast on Complimentary and Alternative Medicine

On Nov 13, the International Myeloma Foundation (IMF) is hosting a webast on complimentary and alternative medicines in the treatment of myeloma. I highly recommend listening in.  Acupuncture, diet, exercise, meditation, visualization are all important aspects to myeloma survival.

Here is a link to register for the webcast:

The View From Above

Chicago from 40,000 feet in the air.

At work, we use the phrase "from a 30,000 foot level" a lot.  When we're looking at a project from high above (30,000 feet) everything looks great. No problems. But as you get to the ground level or into the weeds, you start seeing the details. Complications and issues start to present themselves.

After my scare a couple of weeks ago, from a 30,000 foot level I am now doing fantastic. I'm riding to work. Working out. Feeling good. Things are good. No appointments this week. No lab work. It's all pretty darn good. From 30,000 feet. When we get into the weeds, it's a little different. Steroids leave my teeth real sensitive to cold, even deep breaths on a cold morning cause some tooth aches. My stomach is constantly in turmoil thanks to the variety of medicines I take. I recently went to a lunch time meeting. After eating I had a presentation to make, and I was so worried that I'd have a little gas sneak out while I was giving the presentation.  Revlimid gives me crazy night time leg cramps. I bruise easily. Mentally, I'm on edge a lot. My house is still a mess from the remodel. We fired our contractor. Work starts up again next week and I can't wait for it to be done. Tired of going to the garage to get my clothes. My car makes goofy noises. I fall asleep at 7:30 almost every night. Noon time naps in my office are becoming fairly commonplace. 20-30 minutes of power napping makes a massive difference for the afternoons.  In general I feel like I'm an 80 year old man.

I think myeloma has fast forwarded me, biologically speaking.

So let's take things back up to the 30,000 foot level. Things look so much better from higher up. I'm alive. The cancer is under control. We'll keep on keeping on.

This is my first update in about a week. I haven't really had much to say. Dr Berenson always says that treating myeloma is a marathon.  So if I'm at mile 10 of the marathon and cruising along at a good pace, there really isn't much to report.

Friday, October 11, 2013

Back to Chemo

Earlier today, I was at Phan's office for chemo. With my relapse scare, we skipped a cycle so it had been a month since my last chemo. Whatever virus I had that gave us the scare, is long gone. I had flushed all chemo toxins out of my system. I' ve been feeling absolutely great. But it's back to routine. And that's good. My blood count was over 10, so no procrit shot plus my temperature was 97.6. Fevers are gone.

The point is that chemo day was the day after my birthday.  The staff had a little surprise for me the picture is below. I've also added a picture of the ice cream cake that Leslie surprised me with.

Sunday, October 6, 2013

Saturday, October 5, 2013

Hot Damn!

No cancer progression. That's the good news. All tests came in and nothing points to cancer progression. My 24 total protein number has been inching up for the past few months. It could be mean nothing or it could mean something. But the plan of attack is to keep with my maintenance program and continue to watch everything.  As for my other tests...all good. Bone marrow biopsy shows less than 10% plasma cells. That's awesome. When diagnosed that number was 80%. Berenson said if I didn't have myeloma that the 10% won't even make him blink.  All my infectious disease tests were negative. Thanks goodness. For a fleeting moment we thought that the visit to the Woodstock Farm Sanctuary might have given me some exotic vrius. But no. How unfortunate that would have been. I develop an appreciation/obsession with goats and I catch some crazy disease from them. But all clear. So we'll still see a goat in my yard some day. My creatine is still below 4. My kidneys aren't reflecting increased myeloma cell production.  And my skeletal survey aka full body xrays head to toe showed no lesions, no fractures, no nothing.  All great news.

Remember I was having night sweats, fever and then even day sweats. A couple of weeks ago I was drenched with sweat while sitting in a couple of meetings. Not good. But I haven't had any fevers or sweats in about a week.  My energy is coming back. I'd been pretty fricking tired. I haven't exercised in about 3 weeks. That sucks.

This past week I was pretty sure it was cancer progression. I had mentally prepared myself for it. I was ready to re-engage for the fight. I'm not real good with uncertainty. I'm a bit of  black and white person. You're with me or against me. Anyhow, I got myself to an ok place about cancer progression because then I'd know what's happening and I'd deal with it.  So now I'm in that netherworld that myeoma patients face. Thursday it's back to chemo and I'll try to ride to work this week, so I'll get going in the routine again and all is good.

A friend and fellow patient, Pat, recently relapsed. Pat does a lot of cure talk panels and has written books about myeloma. He's my go to expert. Here's his latest post about his relapse.

It's interesting that Pat is thinking about what might have caused his relapse. I've thought a lot about what might have caused my myeloma. Who knows.  This past week, while I waited for my test results, I did do a lot of thinking about my role in this here world. I had kind of gotten past that. But it reared its ugly head. What am I doing? Why I am toiling away in an office when I have a life to live? How can I give back more? I look at some of my fellow patients and I think, wow, they're doing so much. They have such positive attitudes. I feel a bit loser like. Anti-warrior if you will. Pity party!!!   I've been walking around all pissed off for a week or so. I hate that. I've got to work on my attitude. I've mentioned before that I tried a support group a couple of times. I hated it. Just a bitch session. I don't need that. I have enough of a bitch session going on in my head every day.  But I will also say, it's awesome having myeloma friends out there. It really helps. There's a mindset involved here and I think they get it. Maybe I need a myeloma buddy near me. Someone I can vent to.  I don't know maybe I need a therapist.  A non-partial listener,

I've also been bugged by this government shutdown. When I thought about cancer returning, I think about what if I lost my job because I couldn't work? What if I lost my insurance? I could be screwed. Thanks to the Affordable Care Act though, insurance companies can't deny me and others because of pre-existing. conditions.  Admittedly I have not read the Act. Has anyone? But what's so wrong with helping out others? Frankly, when I hear people blast Obamacare, I take it as a personal slap in the face. Yes, I'm liberal, but to me health care and the environment are two issues that shouldn't be political. Not to be dramatic but if people are ok with people who are sick not being able to get insurance, then I hope at least you send flowers to our funerals. Ok, that's my vent and political statement.

Tomorrow is a new day. I'm getting my head right. Focused on health and positivity. Oh and keeping my fingers crossed that our contractor picks up the pace. Slow, slow, slow. ARGHHHH

Wednesday, October 2, 2013


29 months since diagnosis today. I suppose at some point I'll stop counting. Today's milestone actually almost did pass without notice.
29 was also the number of Rod Carew. One of the best hitters in baseball in the 70s and 80s. He spent most of his career with the Minnesota Twins.(He's in the Hall of Fame, almost hit .400 once or twice, and converted to Judaism).

I've been working all week. I was pretty tired earlier in the week but as we've gone on, I've felt better and felt my energy coming back.  Plus no fevers and sweats in a few days. Perhaps it was a virus.  Tomorrow is Dr Phan and Friday is Dr Berenson. By Friday I'll know what's up. I do a lot of lab work. Typically I want those results ASAP. Particularly with my monthly labs, I really want the results in a hurry.  This week, however, I haven't called to check my results. I'm waiting. We did a whole cement truck load of tests. So instead of getting results piecemeal. I'm waiting to get them all at once.

Earlier this week, Leslie and I were talking about a person we know and about their thoughts on how people should deal with cancer. The first I thought was that this person doesn't know a lot about cancer and cancer patients.  The more I thought about it, I realized I probably had the same thoughts about cancer before I was diagnosed and before I met so many amazing survivors.  Cancer is not at all what I imagined.  Patients function. They do more than function, they thrive. Not everyone obviously, but folks do their darned best to live extra-normal lives.

As I've thought about getting my test results. I've got myself prepared for good or not so good. I can picture my reaction.  If I've been battling a virus, my reaction will likely be "hot damn!". And then I'll get myself ready to restart my fitness and stay ahead of myeloma program. I haven't done anything physical in almost two weeks and I feel like a loose piece of flab.  I'm also prepared to say "aint that a bitch" if it is the myeloma. And then I'll tell myself it's time to tighten the chin strap, put on my big boy pants and kick some ass. I've also been watching my mental state from an external perspective. I've noticed I've had a surge of change over the past couple of weeks. Turns out I am more direct, more honest and less likely to accept bullshit. My own and others bullshit.  In other words and to put it more bluntly, I've noticed that I might have adopted a bit more of a dickish attitude. I can't explain it, but I think for me the anxiety is manifesting in a harsher attitude. Make sense? Maybe not, but it's what I'm feeling.

And this takes me back to what people expect from cancer patients. Sympathy, sad looks are not needed. I'm loaded for bear and even more ready to fight...whether I stick with my current maintenance program or go to something else. Helpless? No. Victim? No.

Tuesday, October 1, 2013

Greener Pastures

There are many many amazing cancer organizations out there. All serve important roles for cancer survivors.  Greener Pastures is one of those organizations.  In their words, their mission is:
Greener Pastures Charitable Foundation, Inc. was formed in March 2011 by Jacqueline Nguyen to raise awareness and funds for cancer research and treatment, as well as to provide support to those affected by cancer.

Greener Pastures endeavors to raise cancer awareness and funds through its website, social media, and local efforts in Southern California, including hosting an annual silent auction and mixer, bone marrow/stem cell donor drives, and various community activities. These events will be supported by longtime friends and family from the Huntington Beach area, where Jacqui spent most of her life. In addition to sponsoring local cancer programs, a portion of the monies generated by its fundraising efforts will be used to help support three organizations: (1) UCLA Stem Cell Transplant Department; (2) LIVESTRONG; and (3) Stand Up To Cancer. While each organization has its own unique theme and purpose, all three support Greener Pastures’ overall goal: to raise awareness and funds for cancer research and treatment, and provide direct support to those affected by cancer.

I was honored and touched and humbled by a recent request to be a Greener Pastures' Warrior of the Month.  Here is a link to my story....

No Update

Still waiting on a host of test results. Patience is called for. Screw patience. 

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...