One year ago today, I was told that I had cancer. In true Chris Carlsson fashion, I had to get an incurable, rare blood cancer, that you can't surgically remove. At the time, I was told I had 3 to 5 years left, as per average. This number still haunts me.
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That is how much of my life was used up in this cancer-versary. I look back and all I see is a year of pain and doctor visits. That is, until I look deeper. I was able to spend a lot of time with my sweetheart, my bride. Thanks to a few miracles and miracle workers, she was able to be there with me, for every poke, stab, draw, cut and drill.
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One great part is being able to still work. My work has been very understanding and very cool. I have also made a few great friends and have learned to let people in. I am a pretty private person, but I feel it is good all around to open up, let people in a bit. If people ask, answer them and be honest. It is not easy being in this predicament, but if you let people who are will to help shoulder the load, it actually can become a little manageable!
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The hardest part, in reality, is the pain. I cannot take ibuprofen, and that is my go to. I am sure if I pushed, I could get a stronger med, but with the recent "crisis" in the news, doctors are VERY hesitant to grant the wishes of a pain medicine, so I pass on it just so that it doesn't cause problems. My theory is, if the pain is there, there is a problem and it needs to be fixed, not covered up. So I deal with it. Every single day. And it is always moving. See the picture, I love this.
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The victories! Oh man, the victories. So if you follow me at all, you would know the best current victory was getting the artificial trachea out. It was a surprise move and came out of no where. We went in looking at surgeries, and left with how to deal with a hole in my throat. It healed quickly and I just went in to a follow up appointment, and this is his words. "Well, everything looks great. Maybe I will see you around the halls sometime?" and with that, I learned I do not have to see him for my throat again. Obviously, if something goes horribly wrong, but, I am all about graduating away from doctors. This week at another appointment,which was an iron infusion. Because my port had to be accessed, they drew labs for my calcium infusion. While waiting, my doctor's nurse came running in and was all, "Did you see the numbers?" and out of breath. I said no, but I am hoping they were good. My calcium was actually normal. His words, not mine. If you have been following, you would know my calcium has been bad since they gave me a nasty infusion in July. I finally recovered. Sweet victory!
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Having realized I may have spent a third of my remaining life fighting this, and running from appointment to appointment, and shot to shot, and infusion to infusion, and.... well, you get the idea, I have decided I need a bit more balance in my life. Getting my trachea out has been huge. Having energy again because my calcium is normal has been very good. Now, I think I want to have a little fun. Some shenanigans. Some adventures.
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So, if you realized you had 80%, or 75% or 66% of your life left, what would you do different? Travel? Have fun? Experience new things? Well, there is the challenge. Before 2020, how many new experiences can you get done? As hard as it is to travel and get around, I really want to have a bit of fun before I move on. Who's with me?
It's great that you feel like adventuring again!! We'd love to have you guys over for food and games. Or we could go Christmas light watching again. Maybe we could try the one caves in midday or zooo lights... 😃
ReplyDeleteSo glad you are feeling like having fun again.
Hi there. Appreciate this was messaging for your family and friends but hope you don't mind I've read it. Diagnosed with myeloma similarly young, but without Chris ' other health complexities I've found it very interesting. I'm impressed how your faith and love for one another shines through in the blog; also easy to tell who is writing - Chris's wry sense of humor or Michelle's well practised hand :-). I might say you have made me appreciate even more not having to deal with insurers - we might not have all your fancy drugs here but never getting a bill is great, and I appreciated my oral cyclophosphamide this week (couldn't believe you had to get it IV). With very best wishes and appreciation of your generous sharing
ReplyDeleteA fellow multiple myeloma warrior! Welcome! And thank-you for your kind words. Where are you from?
ReplyDeleteWhile we started the blog to keep family and friends up to date, we've both been uplifted from others and their journey. I also hope in someway that it's been a comfort or brought knowledge to those fighting the same rare condition and helps bring awareness to those fighting similar battles.
The financial implications of myeloma are astounding. We consider ourselves fortunate to have great insurance, that has covered most everything, but it's a tangled mess that we often are battling. Others have it much worse, so we count our blessings that he's able to get the treatment he needs.