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.

1 comment:

  1. This article gives the light in which we can observe the reality. This is very nice one and gives indepth information. Thanks for this nice article.


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.