Friday, May 15, 2015

I'm still alive! :)

Hi everyone, I know it's been a long time since I've posted.  I know people that I don't get to talk to on a regular basis worry when there are gaps in my posting.  Sorry if you've been concerned; I'm actually doing really well.  This will be a bit of a miscellaneous, stream-of-consciousness type of update:


  • Praise God, my protein electrophoresis test is showing that the paraprotein levels are coming down.  I started out at 2.2 g/dl at my diagnosis, and my latest test showed a level of 1.03 g/dl.  "Full remission" is if I get to 0, but I'm already showing at least a partial response to this intial treatment.  The doctor says that we're still planning for 6-8 months total of this initial treatment, so I still have 4-6 months to go.
  • Every time I come in, the nurses always seem surprised that I still feel pretty normal.  They seem shocked that I'm still at work.  One of them even said, "We call you superstar because your labs are always so good!"

    I guess it's a huge blessing that I haven't felt many side-effects from the chemo.  To date, the only noticeable things are that my taste buds seem affected (sweet things don't taste as sweet) and I have trouble sleeping Friday nights (after I take the chemo drugs and some steroids).  It's sobering to be reminded that things will probably be noticeable at some point.  For now though, I'm learning to be grateful for my good health and for each new day of being alive.
  • This morning while in the infusion center waiting for my shot, I started wondering how the other chemo patients viewed me.  Most of the patients in the infusion center are getting intensive IV chemo (which takes several hours and is more taxing on the body).  Most of them are older as well, and you can tell that they often aren't feeling well.

    Do these people view me with jealousy, wishing that they didn't experience any side effects from the treatment?  Do they look on me with pity for being young, knowing that they too probably started out similarly?  One thing I do know is that they're definitely empathetic.  I never would have been able to empathize with cancer patients prior to my diagnosis, but now that I have cancer myself, I can relate to other patients on a whole new level.
  • Tom Brokaw was on Dateline (you can watch the episode online here) talking about his battle with Multiple Myeloma.  I found it fascinating, but I'm sure my loved ones found it at least a little bit troubling hearing how challenging it's been for him.  There were several things about the episode that I found interesting:
    • Tom Brokaw had no warning before his doctors told him the diagnosis.  They kind of sprung it on him.  I am so grateful that I had several tests that caused me to start to suspect I had cancer before I got the confirming diagnosis.  I don't know how I would have handled that bomb dropped on me out of the blue from a doctor.
    • Brokaw did not want to tell people about his diagnosis.  I don't really understand that.  If anything, I struggle with not being able to wear a badge telling everyone I have cancer.  I don't want people to be surprised when I'm out for doctor's appointments or when I get sick because of my weakened immune system.  More than that, however, the prayers and encouragement from my friends and family have been invaluable to me.  To each his own though, I suppose.
    • Brokaw lost two inches due to myeloma.  NOOOOOOOO!  :'(
    • He kept stating that in spite of his diagnosis, he lived a lucky life (also part the title of his book that he was promoting).  I truly believe he feels that way.  However, I keep asking myself how he would respond if he got diagnosed at my age, before he was able to lead a distinguished and fulfilling career, before he was able to have the children and grandchildren that joined with him during his battle with cancer.

      The temptation is always there for me to look at someone like Tom Brokaw (or even more poignantly, people without cancer that have lived full and happy lives) and feel gypped.  However, every time I'm tempted to think that way, I also realize that there are so many others struggling with so much.  For as sappy and as trite as it sounds, God has unique, individual plans for each of us.

      I can relate to Tom Brokaw saying he's led a lucky life.  There's an important nuance that differentiates us though.  I don't believe luck has anything to do with my state in life.  I have lived a blessed life because God has given me more than I deserve.  My sin made me an enemy of God's, and no amount of my own good works could change that.  Through faith in Christ's death, burial, and resurrection, I am imparted Christ's righteousness and I can be at peace with God.  The fact that I can spend eternity with God instead of suffering eternal punishment is all the proof that I need that I am blessed no matter what other circumstances I may be in.
    • The Dateline special made me grateful for living in the Bay Area with access to doctors and specialists.  Tom Brokaw spends a lot of his time in rural Montana, and he had to travel hours to visit doctors.  I realized that countless others are in the same situation.  For me, I drive twenty minutes for my blood draws and shots.  I can go to Stanford to see myeloma specialists.  What a blessing.
    • Tom Brokaw mentioned that his cancer has been incredibly burdensome on his family.  I know firsthand that it's been hard for my family to come to terms with my diagnosis, and I can only imagine that it will only get harder.  Still, he mentioned that this has brought them closer together, and I'm seeing that too.  I never had any doubt how much my family (and friends!) loved and cared for me, but it's still great getting those constant reminders.
    • The special also showed KathyGiusti, founder of the Multiple Myeloma Research Foundation.  It's pretty crazy that she herself got cancer at a young age and seems to be possibly cured (she received a stem cell transplant from her twin sister).  How providential that God would give her a twin that would be healthy, and how great it is that she had a medical background (and her twin had a legal background) so they had the expertise to start a research foundation.  The MMRF is doing some really great work in finding a cure for myeloma, and I thank God for them and pray that He blesses their efforts.
  • My nurse today said, "No would who looks at you would know you have cancer!"  She meant that as a good thing, but something about that felt odd.  It feels surreal having regular conversations with people who don't know about my condition.  Do I bring it up when they ask what I've been up to or what I have planned for the summer?  Do I tell them when they ask why I have to leave work early Fridays when I go to the infusion center to get a shot?  It's all really weird.
  • I'm realizing that people also don't know how to ask me how I'm doing (and I can't blame them!)  Some people say that we don't have to talk about my condition when we get together because I must be sick of talking about it.  (For the record, I don't mind talking about it; I know that people genuinely care and want to know how I'm doing, and that's reason enough to talk about it.)  Others tell me that I'm totally going to beat cancer because of how healthy I appear.  Others will ask the same things and make the same small talk each week.  (Again, I still appreciate it because I know they care.)  The challenge in that case is - I could appear fine for a long time, but it doesn't change the fact that cancer is now a part of my life.  The doctors really don't know how my Myeloma will progress in me, so part of me feels bad that these people will probably always be asking the same things over and over.  As long as they don't get tired of it though, I won't either.
  • I spent this past weekend in Denver, getting to spend time with my buddy and his wife.  Sure, we made a lot of morbid jokes about cancer (but when you have cancer, you might as well laugh about it).  Aside from that though, those were probably the days I thought about my condition the least.  (We walked over 20 miles that weekend, some of it in heavy rain and even some snow).  I thank God for a bit of normalcy (and thanks to Shab and Kyle for the hospitality and for keeping me entertained).
Ok, hopefully that tides people over for a while.  :)  Thanks for your continued prayers and encouragement.  If there's ever another extended hiatus in my posting, you're more than welcomed to reach out to me via phone/email, or we can grab food or coffee if you're near me.  I'm more than happy to share what's going on; I just feel that if I posted daily, my posts would all start sounding the same.  ("I'm still feeling pretty healthy, but it's still hard mentally knowing that I have an incurable cancer ... etc.")

-b 

2 comments:

  1. Was thinking about you since a few days and came to this page and was glad to see your status update. Best wishes and hope to catch up soon.

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  2. Finally, an update! I guess Adil and I both learned to check less often...

    I'm glad to hear that my (really, our) sense of humor finally has some use in the world. It was awesome having you out here---and we'll have plenty of space for you in NC. Maybe we'll even shove back to the Yay Area at some point.

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