Sunday, June 29, 2014

Gotta Come Clean on the Hell Month of June

I try to be honest with how I discuss and share my myeloma journey.  Some of the mental and personal stuff and thought processes, I don't share.  But when it comes to the physical aspect and challenges and opportunities of myeloma, I try to share as much as I can.  I do it for me.  It helps to vent.  I do it for my family and friends. It keeps them updated. And I do it for other patients and caregivers.  It's not always easy fighting this disease and I question my own fortitude. Going into this, I never thought I'd be able to handle all this.  But it turns out I had no choice, and I do what I need to do and I try to keep moving forward.

For the past few weeks I haven't blogged much. I've been keeping a low profile. Today I come clean.  It's nothing horrible. I started with a phone call to my mom and apologized to her. What is it? It's a surgery I had two weeks ago that I thought I could keep quiet about.  But it's part of my journey. Part of my experience with myeloma and while minor in and of itself, has become a major aspect of my journey.  I'll give some details later. But first let me tell a story.  It starts with the BolderBoulder and our trip to Colorado last month.  

May was huge this year. May 2 was the 3 year cancervesary from my myeloma diagnosis. That's huge.  I'm still going strong.   Leslie and I traveled to Colorado to visit my brother and his family over Memorial Day.  Other family members who don't live in Colorado made the trip as well.  As a family we did the BolderBoulder 10k (a 6.2 mile walk) and raised over $8,400 for Dr. Berenson's non-profit myeloma research group.  Recall, and I state this with not an hint of hyperbole, that Berenson is the reason why I am still alive.  Raising funds for his research group was the least I could do to repay him and his crack research staff.  19 family members joined in the 10k.  Ages ranged from 6 month old Liam to my 78 year old mom, who led the way for Team Goldman.   It was a terrific event and a terrific weekend.   I felt great the whole time, hardly aware of carrying around an incurable cancer. 

To ensure I felt good in Colorado, I delayed starting a cycle of chemo by one week. Typically I get a two week break from chemo.  The additional week made it three weeks off, and I've written about this many times how I'm not real thrilled with any delays in my chemo. Makes me nervous.  Thus, when we had some plane issues on our return home to L.A. from Colorado,  I did everything possible to ensure I made it to day 1 of chemo. No way was I adding another week delay. 

Memorial Day also marks the end of May. For me, returning to L.A. marked the start of my June from Hell. I knew it was coming. While in Colorado, it was very important to me to have a great time, because I knew that the June from Hell was looming. As I write this, we're winding down on June.  The worst part of hellish June is almost behind me, but I still have a couple more weeks to go before I've conquered this difficult month.  A couple more weeks takes me to early or mid July, but I'll still refer to it as the June from Hell for all eternity.

What made it a hellish month?  Well, I've done a lot of debating about what to say.  As I said, in this blog I try to be fairly honest with my journey.  I think my family at times is taken aback by my bluntness.  I'm not the best sharer/communicator with things of a serious nature.  I've gotten better, but there is still room for improvement. In many ways I'm flat out tired of myeloma. Tired of everything that comes along with it.  I'm worn down a bit, and my response is to hibernate, escape, shut things/people out. 

Myeloma is part of my life. End of story. I can't escape it.  It's always out there, as are the either real or potential side effects from all the drugs and steroids we get.   Leading up to our Colorado trip, I determined that I wouldn't mention the fact that upon returning from Colorado I faced the normal chemo, but also had scheduled minor surgery squeezed in between two chemo cycles. I didn't want folks to know. I didn't want them to worry.  And I didn't want to talk about it. As I've discussed before,  everyone experiences illness differently.  My mode is to isolate myself.  Yes, it takes a village to fight the battle, but for me it also took solitude, allowing me to get my mind right for the fight.  Not telling my family about the surgery, meant that I couldn't blog about the experience. It meant I couldn't write about the June from Hell.

Well,  the surgery is now 12 days in my rear view mirror. Recovery is much slower than  anticipated. But I'm getting better, painful step by step.  I will say that post surgery has been the most painful thing I've ever experienced. Ever, not just during my myeloma lifetime.  Tomorrow I go back to work. I've been out for almost two full weeks.  Chemo starts tomorrow. More treanda, more dex, I have a feeling we might be changing things up next month. But that is next month. I'm just focused on getting through this month (well 6 weeks).

Having myeloma has taught me that discretion is out of the window.  There's not a part of my body that a doctor or nurse or team of doctors & nurses haven't seen. There's not a part of my body that hasn't been the topic of discussion.  But I still have some control.  All myeloma patients face lowered immunity and are faced with getting infections or other oddities.  Blame the chemo drugs and steroids for this, not just the cancer. In other words, the cure can be as dangerous as the disease in some cases.  I saw a dermatologist and we tried a couple of things to no avail.  I also couldn't take an oral medication, given my poorly functioning kidneys.  The only other solution. Surgery.  Surgery wasn't too complicated, but the recovery is a bitch.   

I've had a lot of free time these past two weeks. I discovered Frasier. It's now my favorite sitcom of all time. I've read. I've napped. I've thought a lot.  I've determined that once I get through this hell June and early July, I'm getting into tip top shape (I can't work out for about 3 weeks post surgery).  I'm going to eat right. I've gotten away from healthy eating and need to get back to it.  Proper nutrition can help keep the cancer at bay and can improve my immune system so I don't get shit like this again.  And (I've said this before), I'm going to live my life right. Won't be afraid to try new things. Won't settle.  blah, blah, blah.

In summary, if you've been wondering what I've been up to these past few weeks, here you have it. I'm almost back.

Saturday, June 21, 2014

Another Month

Friday was Berenson. I wrote earlier in the week how I wasn't sure what my latest numbers mean in terms of my treatment.  Well the decision is in: More of the same. We'll stay on the Treanda regimen for another cycle and then next month, we'll determine if it is back to maintenance or if it is time to try something else.  We've got the myeloma stabilized, which is really the goal.  Going forward the question is how best do we keep things stable with minimal impacts on my quality of life.  And that's the plan.  Monday and Thursday this week, it is chemo.

Wednesday, June 18, 2014

Which Direction

We might be at a crossroads. That's my prediction for my upcoming Friday visit with Berenson.  Which direction to go?  There may be several options to go and not just a clear one direction. Luckily the situation isn't hairy and we can smartly consider everything.  I wrapped up cycle 5 of treanda (bendamustine) a week and a half ago. Lab results are in. They're decent. A little decline in my numbers but nothing to suggest that this protocol is still uber effective, as it once was.  Remember, we took me off of maintenance back in March when I had a touch of the relapse. So, the question (in my mind) is what now. Back to maintenance? Perhaps. I feel good (other than some treatment related issues, but nothing major).  Another cycle of treanda? Perhaps. We give it one more chance to do it's magic. Or do we switch to some other newer myeloma drug? Pomalyst perhaps. It's hard to say. And I'm doing all this guessing prior to seeing Dr. B.  He might have a different take on my numbers.  He's all about quality of life, which I have. So to maintain my normal, perhaps the doctor will have something else in mind.  I guess we just wait and see. Friday is just two days away.

Video on Myeloma News with Dr Berenson

Here is a video from the annual meeting of the American Society of Clinical Oncology, with Dr. Berenson (my doctor) explaining the latest on myeloma treatment.

Monday, June 9, 2014

Some Personal Feelings About Dex

hate, hate, hate.  I can't speak for others, but dex is such a mother fucking pain in the ass. It's a Monday and I've got a bunch of baggage to lug around (metaphorically speaking). 

Some Reading on Dex

Here's a recent write up by Pat Killingsworth on Dex. Eat my shorts dex.

Saturday, June 7, 2014

I'm a Man!!

I'm 52 years old. Diagnosed at 49.  A nurse told me yesterday that I look like I'm in my late 30s. That's all fine and dandy. But so much about this journey makes me feel like I am reliving my younger years. Questioning, wondering.  But it's not about regret.  It's about moving forward. I've been thinking a whole lot about how I move forward.  We passed 37 months. I feel awesome. But I'm still doing heavy duty chemo. Maybe we'll go back to maintenance, maybe not. The goal right now is to squeeze as much benefit out of Treanda as we can, get me stable and then see what happens later. All makes sense.  Several months ago, I had my port removed. We thought it might be infected. Whatever was going on, it hurt like heck and I had a nagging swollen right shoulder. It's been awesome having it out. I can work out, swing my arms, do whatever, with having that background thought that I might jar the thing loose. A scary thought given it's a direct line to my blood flow.  Lately though I've been thinking about getting it put back in.  I have to do all chemo in my right arm. Because of my never used fistula in the left wrist, the left arm is off limits. Off limits to infusion. Off limits to taking blood. Off limits to checking blood pressure. Because of the frequency of my infusion 4 days within two weeks, my right arm or hand is constantly bruised or in a healing process. Annoying. The port makes things so much easier.  Even just moving around during chemo is not a problem with the port.  I think I'll see what happens this cycle and if it looks like more chemo, that port is going back in.  For old times sake, here is my old port shortly after removal. I've got it somewhere here at home.

Later this week, probably Friday, I'm doing the monthly 24 urine collection. Myeloma patients are all familiar with this.

The fricking lab never found my small urine catch a couple of weeks ago. How do you lose a cup of pee? Ridiculous (or ridicules, depending on your spelling ability). So we do it again later this week and then follow up with Berenson.

When I was first diagnosed a movie came out called 50/50.  It was a comedy with a cancer theme, I refused to see it for a long time. Why the fuck would I see it?  I eventually did and it was darn good and funny.  Today, I finished reading The Fault in Our Stars.  Read it in two days. Fasted I've read anything. Other than perhaps Jaws which I read as a kid when I was laid up from the nail through my shoe into the bone, which lead to a bone infection which lead to a bone spur that I had removed about a year before I was diagnosed, which leads to my theory that the spur removal released cancerous toxins into my system, which lead to myeloma. A theory. Water under the bridge. Anyhow, this book is absolutely awesome. It's about teenagers with cancer. The movie comes out this weekend. A must see. My nurses read the book and told me I'd cry. I did. But then again I cry pretty easily. But let's not forget...I'm a man!!! And while the story it is about teens with cancer, I found so much of it rings (rang?) true.  The mark we leave, the mortality question, true love and so on and so on. I strongly suggest folks read it. But this brings me to the statement that I'm a man. I am 52. But as I cruise along, I sure feel like I have more and more questions about me and about what I'm doing. Quite a quandary.

Next week is the start of the Port's summer high school intern program. Remember last year, I fought having an intern, but it turned out to be a great experience, so I'm doing it again. Me=mentor. Funny right? Last year, during the mentor orientation we had to say who our mentor was. I really struggled with this question. Not one person jumped out at me. I felt a bit loser like.  I think this year, it'll be a bit easier. I think last year, I partly didn't want to have my mentor be cancer related. But now I think that is the case. As much as I don't want it to be, I am myeloma. That's me. That's cool I suppose.  I've met so many amazing, inspirational people. Brad, Amy, Bill, Cindy, Debbie, Steve, Pat, Gary and so on and so on. And speaking of Brad, it's time for my Brad plug. That guy fucking kicks ass. He has his second annual Bradstrong golf tournament later this month, raising money for the MMRF. He's approaching 90 thousand raised.  That is awesome. Here is the link to his tournament information.   Brad's also a bit a fantasy football guru. And he's managed to fit in writing an on line column on fantasy football and recently did a 10 minute segment on XM radio.  My point is that Brad is doing myeloma right.  

Also one last thing, here's the most recent post from Pat, who is dealing with a relapse right now. Pat is super important to me. I learned to be open and honest about this journey. And I can turn to Pat whenever I have myeloma questions.  His attitude and positivity is 100% infectious.

Friday, June 6, 2014

Myeloma Treadmill

Round and round we go. Today I wrapped up the final day of the latest chemo cycle. In a week, I'll do my labs and then see Berenson and then I'll know if it's back to maintenance or more Treanda or who knows what.  This is how it is. This is myeloma. I've said it before, I'm fortunate to be doing as well as I am. Life, generally, is normal.  Or I've adapted to the new normal. But I still have the unknown hanging over me.  When I had the 3 weeks off treatment, I felt great, lived and never really thought about the myeloma. That's good.  But when I'm in the midst of  a cycle I get the dex induced mood swings and associated doubt & worry.  I'm a fricking champ is what I tell myself, and I fight through the roller coaster emotions and tiredness.  Last night I went to bed at 7. That was nice.  But as you can see, nothing really to report. Just keeping on keeping on.

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...