Don’t Play with Matches

Church!
I was able to go to church yesterday.  I’ve watched sermons online, but there’s nothing quite like actually being in church.  Singing along with 1,000 other people after being absent for over a month was awesome.  We like to sit close to the front, and did so yesterday.  I like to take Tucker up to the baptismal as people are getting baptized and did so yesterday.  Granted, I wasn’t standing for the songs, but I don’t think God minds.  And to my pleasant surprise, there were plenty of full communion cups to choose from 🙂

hc1 and AIM
I’ll forgive you if you missed the big news.  The Today show didn’t cover it, but it is important none the less.  I mention this press release for a couple of reasons (http://tinyurl.com/qa6cw74).  First, I worked on this account at hc1 and love the AIM team.  Second, AIM is leading the way to personalize cancer care via genomics.  Personalized Medicine is a relatively new field where a person’s cancer is sequenced to find the exact mutations they have at a genomic level.

Current treatment is kind of like shooting with a shotgun.  Typically you are given treatment based on the area of the body where the cancer exists.  You are shooting a broad spectrum of chemo that typically works.  Therapy based on genomics is like using a sniper rifle.  After sequencing the cancer, doctors can tell exactly what genes are mutated and prescribe medicine that targets those specific genes.  Furthermore, if multiple genes are mutated, doctors can try to target a gene that will have the least impact on normal tissue.

To see an example of the power of genomic medicine with Leukemia, look at this article: http://tinyurl.com/ayzhsre.  Now, notice this is from 3 years ago.  Think of all the advancements that have been made in those 3 years.  Personalized Medicine is quite an exciting field!

So what does this mean for my treatment?  Nothing right now.  Genomics is still typically considered an advanced treatment.  I’m progressing with standard treatment, which is the best course of action at the moment.  It’s nice to know genomic medicine is available if I need it.  But let’s pray that I don’t need it.

Work
If someone ever offers you a deal where they tell you you won’t have to work, you can sleep in and take naps, and you’ll still get part of your salary, don’t take it.  They are going to give you cancer.  Not working always sounded appealing, but in reality not working isn’t much fun.

I haven’t worked in a month.  That’s really odd to think about.  In some ways it seems like I was just there last week.  The mind boggling thing to me is that I won’t be working anytime soon.  As in months.  I’m not sure how I’m going to handle that.  I’m used to doing something.  I’m used to solving problems.  I’m used to trying to think of creative solutions.  Right now I’m focused on my treatment, and I imagine that will consume my mind for most of my time off.  Still, I miss the satisfaction of going to work.  I dearly miss all my coworkers.  I miss the leadership team I was on and the great things we were doing.  But things happen in life.  All things considered, I’m still alive and I have a path back to work.  I know I’ll be welcomed back, and that is a big relief to not have to worry about a job after all this is over.  I just wish I could be working now.

Hair B Gone
Left: After coming home from my first round of chemo, my hair was still intact. Right: After my hair became patchy, we shaved my head. My goatee fell out mostly on its own.

Bald is Beautiful 
Losing your hair is just another part of cancer.  While my hair has been falling out for some time now, I had been holding out on shaving it.  I’m not quite sure why.  Last time I shaved my head as soon as I got home from the hospital.  This time around, I’ve held out.  I guess I’m just used to me looking like me with hair.  Not me looking like me as a bald person.  Now, don’t get me wrong.  I rock the bald head.  And that is pretty much what I have now.  I didn’t shave my head with a razor (yet), but Lindsey took the clippers and a number 1 guard to my head last night.  I had already shaved my goatee, as most of that had fallen out.  The interesting thing is my goatee is gone, but some of my other facial hair remains.  It’s not growing, but the stubble is there.  So it looks  a little funny to have a bald chin and upper lip, with stubble on my cheeks.

Match.com
Before Lindsey and I met, I tried online dating for a bit.  It never progressed to anything in person or even a phone call.  I’m pretty sure I used eharmony, but that doesn’t fit the theme of this post.  On match.com, people search for their perfect love.  On bethematch.org, people search for their perfect stem cell match.  While I found my perfect love outside of online dating, I have now found my perfect stem cell match via bethematch.org.  Ok, perfect may be giving it a bit too much credit, but I do have a 10/10 match.  If you recall, they want to match 10 alleles to ensure the best possible transplant.  Some centers will transplant with an 8/10 match, but 10/10 is better.

Today I received word that I have a willing donor who is a 10/10 match!  I don’t know exactly what this means as far as timing at the moment.  I have my appointment with Dr. Cripe on Wednesday, where we will talk about next steps.  But the big milestone is having a match!  One less thing to think about and one more thing to be thankful for.

A Duck Dynasty Prayer
Thank you God for a match.  Thank you for someone who is willing to give me a chance at life.  Thank you for their sacrifice and love for a stranger.  I pray for others who are waiting on their match.  Please comfort them and provide a way forward.  Thank you God for the ability to go to church.  Not everyone has that ability.  Not everyone has that freedom.  I am thankful for both.  Thank you God that I am feeling better.  Thank you for all the support we have received.  Thank you for another day.

25 thoughts on “Don’t Play with Matches

  1. AMEN dear nephew……thank God there are still giving and generous people in our world. May God bless them richly and may their stem cells irradicate all the cancer cells in your body.

    And,as you reminded me….yes bald is beautiful..you are still as handsome as always

    Love to all
    Aunt Liz

    Liked by 3 people

  2. What answers to prayer!!!! To God be the glory for the great things He has done! So excited that God arranged a match for you and that you got to worship with your church family. You are dearly missed at work and I can only imagine how stir crazy you must be, but we all want you to kick this cancer so you can continue to be the amazing team member that you are; therefore, keep focusing on getting better and don’t overdo 🙂 Continuing to pray constantly for you.

    Liked by 3 people

  3. yay!!!! I’m so excited. Matching is hard work whether in marriage or in stem cells. We all find that perfect someone and you have found TWO!!!!! My heart feels so wonderful tonight. You can rock that bald head knowing that you have someone willing to donate their stem cells to you! Great news. Praying God keeps this path going strong and is there with you during the journey!

    Prayers. ROBSTRONG!!!!

    Liked by 3 people

  4. There is so much “Thank You Lord” info in this post! Thank you Lord for your 10/10 match for Rob! Thank you Lord for Rob’s time in church, his friendship with co-workers, his healthcare providers, for research at hc1, his ability to rest and strengthen! Thank you Lord for you, Rob, bald, hairy, whichever! Thank you Lord for Rob’s wonderful support group, our Culross/Hosselton families! Thank you Lord for carrying us through this journey! Thank you Lord for this awesome post of Your loving arms holding us up!

    Liked by 5 people

  5. Reading the part just now about how you have a willing donor gave me Godbumps! I am so very grateful to someone I have never met. Coincidentally I just mailed back my swabs to officially join bethematch.com a few days ago and Mark’s swab kit it on its way here (at age 44 and 3 months, he made it in 🙂 Braden will join in 3 years when he turns 18. The importance of this program is so amazingly important to us now that someone we love is relying on it. I’ll be praying for your donor in a special way, maybe he/she is the sibling of a cancer survivor who wasn’t a match for their own sibling like our situation, but can now save you, a total stranger. I hope to be able to do that for someone else someday, if God sees fit💙
    Love you!!
    Michelle

    Liked by 4 people

  6. What a great answer to prayer! God does answer our prayers and so thankful through His grace, the perfect match was found! Now we will continue to pray for complete healing as you go through this process in the coming months. It won’t be easy, but with God in your corner, you will win!

    Liked by 5 people

  7. We miss you at work too Rob! Awesome news about the match. Truly answered prayer.

    Father, thank you for Rob and Lindsey and their continued faith in these hard times. Give wisdom to Dr. Cripe and pour blessings on the willing donor. Above all, let Your Glory be revealed in these things. Amen.

    Liked by 3 people

  8. What wonderful news about the match. Praise the Lord! I am glad to hear that you are doing well. I’m sure God doesn’t care that you sit down during the songs…He knows your dancing in your heart!

    Liked by 3 people

  9. What wonderful news. All three of my daughters and myself are registered with Be the match…..I must say my prayer has always been God would use me in that way. I have yet to be a match to someone, but I sure am willing. Praise the Lord for your willing donor.

    Liked by 4 people

  10. Thank you Rob for sharing your story and faith in God with us. We will continue to pray for you and your family each day. Gods blessings on you and your family.

    Liked by 2 people

  11. My daughter had multiple myeloma and had a st cell transplant on April. She did not get full remission although she is doing terrific. I wish you the very best on your treatment. Hang in there, which is what I tell my daughter.

    Liked by 2 people

  12. Years ago a game show on television called the Match Game. Silly questions often brought sillier answers. Your matching “partner” certainly is silly, but the match does make us smile. So glad to hear the 10/10 number. Great match. God is good.

    Liked by 2 people

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