Taking It Easy

Home Life daddy and tuck
I’ve been home for over a week now and have settled into a routine.  Unfortunately that routine can be a bit monotonous at times, but at least it’s at home.  To prepare for my home coming Lindsey cleaned and sanitized everything in the house.  Our bedroom is a safe zone for me and the kids aren’t allowed to go in there.  When the kids come back from pre-school or anywhere out and about they have to wash their hands.  They’ve picked that habit up pretty well and will hold their hands up to my nose to smell the soap so I know they are clean.  Every now and then Sydney collapses to the floor with an “I’m too tired to wash my hands!” But eventually she gives in.

I’ve been a lot more tired at home than I thought I would be.  I think part of that is the stimulation of 3 kids plus stairs.  Those damn stairs.  You could set $1,000 at the top of the stairs and depending on how I was doing, I might just pass it by.  Slowly but surely though I’m gaining strength back.  I do feel better today than I did yesterday, and here’s to hoping that trend continues.

My Immune System
My counts are coming up nicely, but the problem is my new cells have never dealt with a virus or bacteria.  Remember, it’s just like being a newborn baby.  Because of this, I have to wear a special mask if I go out in public.  Right now the only public I go out into is the clinic for lab draws and checkups.  There’s too much risk in picking something up that my body doesn’t know how to fight off yet.  At my next appointment I’m going to ask about immunization schedules.  Not sure if I start immunizations at a specified day or if it just depends on how I’m doing.

How I’m Doing
Overall I’m doing good.  My stomach is the biggest issue.  It’s upset a lot and  while I’ve managed to keep things down on the north end, they flow out rather quickly on the south end.  Thankfully Imodium seems to control that issue.  I still take anti-nausea meds to try and help.  Sometimes they do help and sometimes I’m squirming on the couch to find a comfortable position.  I also seem to be colder than I used to be.  Previously I could walk around the house in shorts and a t-shirt and be just fine.   Now I wrap myself up in a blanket, have the fire going and even turned the heat up.  It will be interestng to see how long these differences last or if they become the new norm.  It will take months or more for my body to figure out how it wants to act.

What’s Up Doc
I saw Dr. Nelson on Monday.  This was my first time seeing him since before transplant.  Overall he was very pleased with my current state.  He said I’m probably in the top 5% of patients as far as how well I’m doing.  He asked me if I’m an exercise buff which drew an audible laugh from Lindsey.  I may not work out, but I guess my young body can bounce back better than some.  At this point I should be going to clinic twice a week.  Once to see Dr. Nelson and once for lab draw only.  However since my counts are up and everything but my magnesium is in range, Dr. Nelson said I could just see him next Monday.  That means only 1 visit this week!  As for my magnesium it was only slightly low.  I’m now taking an oral pill to help with that.

Be Careful What You Ask For
To recap, the stem cells that were put into me is the Graft.  I am the host.  The main complication with transplant is Graft vs Host Disease (GVH) where Dom’s cells recognize my cells as foreign and begin to attack them.  Some of the drugs I’m taking are to prevent GVH.  GVH will most likely occur in the skin, gut or liver.

Now here’s the kicker…there is also the Graft vs Leukemia effect (GVL).  Just like Dom’s cells may recognize my skin as foreign and attack it, the hope is Dom’s cells recognize any remaining leukemia cells and attack those.  The problem being, we are suppressing Dom’s cells so they aren’t as likely to attack.

So during my conversation with Dr. Nelson on all of this I asked why we don’t induce GVH.  His answer was quite simply “because people die from it”.  Of course people die from relapsed leukemia as well, just not as quickly.  So the balancing act that Dr. Nelson will carry out over the next few months is to decrease my meds that suppress Dom’s cells but not so much that it kills me. He thinks I will have some GVH.  It’s odd because I want GVH to wipe away any remaining cells, but at the same time I don’t want it to kill me.  As Dr. Nelson said, be careful what you ask for.

Next Steps
Right now life will look the same for the next few months.  Rest, drink plenty of water, eat the right foods, and increase activity as tolerated.  I’ll probably be a shut in for most of the winter.  Maybe that will change once I start to get immunizations.  And obviously, I’ll travel to clinic for checkups.  It’s a little weird to think of recovery in months instead of weeks.  Today I was reading a few stories where people were talking years and not months.  I do have my age on my side and I’m a stubborn SOB, so hopefully I can stay in the top 5% and be better sooner.

A Duck Dynasty Prayer
You give me each day as a gift.  What I do with it is my choice.  May the choices I make and how I spend my time honor you God.  It’s hard to get up and do things.  It’s hard to lay down and do nothing.  Help me to find a balance.  Something that will pass the time and enrich me.  I thank you God for getting me to this point.  Let’s continue on this journey together.  Thank you for another day.

12 thoughts on “Taking It Easy

  1. Thank you for posting throughout your journey. if I had the gift of words you have, I could find a way to say how much I appreciate you sharing your world and your positive outlook. You are a true inspiration.

    Liked by 1 person

  2. I remember reading in your blog when you described post stem-cell transplant that when you first would come home you would need care 24/7, and that we would have to wake you up to give you your meds. Look how good you are doing at day almost +28! Each day as you indicate will be better and in a few days you will have one month behind you!! I think you are definitely in that top 5% for sure!!!! I am just soooo proud of you! Love you so much!!!!

    Liked by 3 people

  3. I can see how waiting is the roughest part of the journey. When you were fighting and something new was happening every day, your spirits seemed to be higher. (Although I am still amazed at your positive attitude.) When you have strength, I think you should consider writing a book. You have months as you said and you can use your blog as a guide. Apparently getting a book published is easier than it used to be. At least looking into the possibility of writing your story might be a good way to fight the boredom once you have the energy to do so. As always, Best Wishes.

    Liked by 2 people

  4. Good to hear from you, we have been wondering about your progress. I like the idea of you writing a book. You definitely have a knack with words. Thanks to your mom for some of that. Prayers continue for your ongoing battle.

    Liked by 1 person

  5. As my older friends say, every day that you look at the green side of the grass is a good day. Glad to see you being so smart by being as cautious as you can be about infections. One key thing to take to heart is that everything is as it should be. No, we’re not saying that we like everything the way it is. We’re just saying that everything is in line. You’ve got all your Dynasty ducks are in a row. Everything is moving forward and on schedule. Many good things have already happened, and many more are coming down the pike, and will arrive soon. Meanwhile, you are with your family, the most healing place you could be.

    Love, Uncle Claude

    Liked by 1 person

  6. Praying that you find the balance between doing nothing and doing too much. And top 5% -Wow!! That is pretty amazing and must have been such a great feeling to hear Dr. Nelson say those words! I love what Dr. Nelson said too about wondering if you liked to exercise–maybe Dom is a runner!!😉 and you can do that marathon with me in 2020 to celebrate you being cured😊.
    Love you brother and stay strong– you are fighting this battle so well💜

    Liked by 1 person

  7. Hi Rob! So happy and thankful to hear that you are in the top 5%! Yay! I can only imagine though what it must be like to be stuck at home waiting for your strength to return and not having a lot of things to keep you occupied. Being a patient is hard stuff! Just know that if you really get to point where boredom is making you a bit crazy, I have about 50 pounds of wool and a bunch of rug patterns just waiting to be hooked! The learning curve is low. You can start hooking rugs and claim “hooker” status as part of your diverse skillset!! Just tell me when to bring you the supplies. 😄😜🙋👍

    Liked by 1 person

  8. Love the pist before mine. I can teach you to crochet too.

    You are amazing and God has great plans for you. You have been blessed as one of his soldiers and are marching on making good progress.

    So proud of your faithfulness, your perserverance and your Christ-like presence to others.

    Sending daily prayers up for you. Lots of hugs,and kisses for everyone.

    And that picture of you and Tucker is precious.

    Aunt Liz

    Liked by 1 person

  9. Just wanted to say HI. Hope all is progressing well…..keep on progressing…it is very exciting for those of us watching you and empowers us to live better, love more, and to persevere in our wisdom to find God in everything we do, waiting for HIS plan to be fulfilled and loving one another.

    Love you bunches
    Aunt Liz

    Liked by 1 person

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