The Last of the Bone Marrow Bucket List
I’ve been able to do a lot of things since my SCT was delayed. Now the life of my bone marrow is winding down and the bone marrow bucket list is shorter as well. Tomorrow (Thursday) is my last day of freedom before being admitted. At the end of this post are some pictures from the last few days of my Bone Marrow Bucket List and below are some pretty good “I love ice cream” photos.
It Won’t Be Long Now
Yesterday I found out the plan for my admission this Friday. I will report to first floor admissions at 7:30 am. After I check in, I’ll go to Interventional Radiology to get my central line placed. This is where I get some good drugs to keep me sedated while they place the line. After that is over, I’ll be taken to the Bone Marrow Transplant unit, which will be my home for around 4 weeks. I’ll be given chemo at some point on Friday and then I’ll start radiation on Monday.
Wake Me Up When It’s Over
I’m not one to wish I could fast forward through life, but I wouldn’t mind a skip the next 28 days button. The SCT is most definitely necessary, but also most definitely not enjoyable. My biggest concern going into this is mouth sores. I was lucky enough to only have to deal with them once before, and even then it was a mild case. Some viscous lidocaine and regular doses of Dilaudid kept the pain at bay so I could eat soft foods. However there’s a good chance the one two punch of chemo and radiation this time around will cause severe mouth sores. Like I can’t eat so I get a feeding tube down my nose kind of mouth sores. These are pretty typical during stem cell transplant and I’m not looking forward to them. I’m sure plenty of drugs are available to help with the pain, and obviously they can keep me nourished with a feeding tube or TPN. But all things being equal I’d like to be blessed with minimal mouth sores.
The Good and The Bad
There’s probably no good time to have an SCT. There are some reasons I’m glad my SCT was delayed from 9/22 to 10/9, but there are also some down sides to it:
- Good: I get to enjoy some fall weather. Being admitted on 9/22 and out of commission for a few months means I would have missed being outdoors and seeing all the beautiful fall colors. There aren’t to many colors yet, but it’s been good to enjoy some fall weather while I’ve waited for the new date.
- Bad: I’m going to be in the hospital for Halloween. It wasn’t guaranteed that I would have been out of the hospital for the earlier admission, but I definitely won’t be out now. That means I’ll miss getting to see the kids in their costumes as they trick or treat in the neighborhood. There are only so many years that the kids will love to dress up and let mom and dad go with them. I’m really bummed that I’m missing one of those years.
- Good: I mentioned a while back that the BMT Unit has smaller TVs. The good news is they were ordering bigger TVs. Now I don’t know if they’ve been installed yet, but I’d like to think that Kelly is hanging a TV in my room as we speak. Perhaps she has also strung some streamers and decorated the walls too 🙂
- Bad: I know I will have medical expenses in 2016, but I was hoping to get the major ones out of the way in 2015. It’s likely that the delay won’t have too big of an impact, but it’s also possible I could have an admission or some treatments in early 2016 that would have taken place in 2015 if things hadn’t been delayed.
- Good: You have to go to the dentist before an SCT and it had been a year since I had been to mine. They found a very small cavity and got it filled. If I wasn’t having an SCT, who knows how long I would have waited to go and how big that cavity might have become.
Goodbye Hair
Have you ever had a garden that you’ve painstakingly cared for? Or perhaps some flowers that you planted, watered and fertilized. Then one day a rabbit or some deer come along and destroy all your hard work? That’s kinda how I feel about my hair and my beard. For the last few weeks I finally had some good hair and a good beard going. I don’t exactly style it every morning, but I do keep it trimmed and looking good. Now the chemo is going to come and destroy my hair, just like a rabbit eats up your lovely garden. I know the hair will come back, and I do laugh a bit when I wash my hair and see it all coming out into my hands; but losing hair seems to be a big deal to a lot of cancer patients. On the plus side though my nose hair will fall out and I won’t have to trim it for awhile, so I got that going for me.
Should I Commit a Crime?
In a little over a week, I’ll have new bone marrow and new DNA in my blood. That kind of begs the question on whether or not I should commit a crime and leave some blood evidence behind. By the time they catch up to me, I’ll have new blood and they won’t be able to link me to the crime scene. Although I guess on the downside if my donor commits a crime I could be linked to the blood evidence there. This one seems to be a glass half empty or half full situation depending on how you look at it.
A Duck Dynasty Prayer
God, keep me sane through all of this. Through all the ups and downs, be my constant. I thank you for calm nerves and a willing attitude. Help me to enjoy my last day before admission and then many more days after that. Thank you for another day.
Thank You For Another Day 
Rob, prayers are sent your way and for your beautiful family. May the mouth sores be at a minimum. We also pray for the donor who came forward to give a a precious gift to a stranger. God bless you and keep you and shine his light upon you and give you perfect peace during the time ahead.
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Praying for you.
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Glad you have been able to enjoy some pleasant fall weather. It is my favorite time of the year. Thanks for the update, now I can add asking for a lack of mouth sores to my list of Culross requests. I do know that God knows what you need, but it makes me feel more useful when I can be specific in my prayers. I do believe that is a control issue on my part, but I know God is the one in control. I just keep trying to do my part. Praying the radiation goes well next week.
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Lifting you up in prayer now. My little boys pray every night for you Rob so I will have to read them your update tomorrow.
God Bless!
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Rob I am praying for you. Praying all goes well. Praying your line goes in easily and that it works without issues for the next several weeks. Praying for NO mouth sores and a decent appetite for proteins and fats…you know-ice cream sundaes with nuts on top. And I pray for you Lindsey and the kids that all will have the things they need over the next several weeks. I wish there was more I could do??!! So “put on your brave face and get out there son” you can do this. Robbing a bank may not be in your best interest in the way to he hospital, but feel free to daydream about all you “could” do. Good luck tomorrow. I’ll be thinking of you.
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Rob – There is a dental hygiene product called Smart Mouth. It’s two solutions that you mix together, twice a day. It’s the only thing I’ve ever tried that interrupts mouth sores in their life cycle, and gets them healed faster. Maybe that’s because one solution contains zinc chloride, and the other contains sodium chlorite, both of which kill germs. Used to get mouth sores on a regular basis, but not so much anymore, so maybe it’s preventative, too. Good luck and prayers for these next steps. Love, Uncle Claude
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Hmmm. You have the basis of a intriguing plot for a crime mystery. Better take out s copyright on that and start penning your first bestseller. May the mouth sores be minimal. As always, you are lifted in prayer.
Love, Uncle Jim
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It’s time! This is it! This is what you have been wanting, needing, fighting for, getting prepared for! Praying for you hard. Praying for no mouth sores. Praying for your caretakers. Praying for your family. Praying for the donor! Praying for God’s healing power and constant protection for you.
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Being stuck in one place for so long might tend to make one feel alone. I just wanted to remind you right now, that we are all with you in spirit. My RobStrong bracelet is on my turn signal in my van so I pray for you when I’m running kids to and from. And since I spent hours doing that yesterday, it was a lot of times I thought of you!
PS the little lion is ADORABLE!!!!! Roar!
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Ben was just asking me for an update on you. Love u guys. Looking forward to u being on the other side of all this.
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So happy the day is finally here! Praying for you and your beautiful family. Thanks for posting the awesome pictures of the kids, SO cute! Makes me remember the days when my twins where that age, and now they are 14….they grow so fast, enjoy every minute.
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Prayers for healing. Prayers for minimal mouth sores. Prayers for comfort. Prayers for Lindsey and those beautiful children. Prayers for your doctors and nurses. Best of luck, Rob.
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Praying for all of you. May God’s healing touch surround you throughout the coming months,
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Always good to hear from you~ I’ll be thinking about you and hoping for minimal mouth sores as well. Your kids could NOT be any cuter, and I usually prefer dogs to kids. The pictures of them sleeping next to each other are my faves…
I like that you always find a silver lining- like the nose hair trimming. Definitely a PLUS!
Positive thoughts coming your way Rob.
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I appreciate your positive perspective (and your sarcasm!). We continue to pray for you Robbie!
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Praying
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Hi Rob ~
Praying for you, Lindsey, and the kids. You’ve got this. Hang in there. And don’t commit any crime except killing this Leukemia once and for all.
Kari
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Our journey has been quite diverse in directions. At each fork in the road, praying all the way, God brought us to the correct path that led to the better outcome. My “thank you Lord” prayers are growing in number, as we enter this next phase of our “trip”. My prayer now is that throughout this next week you say to yourself, “I am preparing to heal,” and in a week’s time, your thoughts will be filled with “I am healing,” “I am getting better,” and “God is getting me through this leg of the journey”! I am thanking God for donor #2, and also praying that donor #1’s medical hold is removed so he can be healthy again. I am thanking God for Blinatumomab, and its timely release by the FDA. I am thanking God that our dates are here, and that you are ready for God to lay his hand on you and heal you from this nasty cancer. I thank God for your incredible strength that has helped us all reach this next step. I am thanking God for all our prayer warriors, and their extremely fantastic support. Here we go son, and soon we will be witnessing you come home from the hospital, and we will be there with you, celebrating God’s wonder, beauty, and Blessings for your good health! Love you always, Mom
The pictures are absolutely filled with joy!!!!
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Happy for you that the day is finally here. God will get you through this. May he bless you with a clear mouth and strength and patience. Blessings to your family, the donor and the doctors and nurses who will care for you. Hugs
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Rob and family, Thinking and praying for you all during this exciting time. Praying for comfort, strength and success in the SCT. God is with you.
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Rob, my thoughts and prayers are with you and your family. Hoping the next 28 days go well.
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Praying for you and yours. You keep such a positive attitude and I admire you for that. Stay strong, you will get through this!!
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Praying for you and your admission today. Praying for the donor and the doctors and nurses that will care for you. Praying for Lindsey and everything that is one her plate, that she is able to have an extra measure of energy and stamina to get her through. Praying for Sydney Natalie and Tucker, that they will be extra good at home with sleeping and eating and getting along with each other. Praying for you, Rob, that you would feel our Lords steadfast love during this time and that He would sustain you with the peace that you need to walk through these coming days. Praying for your body to receive the new stem cells correctly and for your healing to be quick. Love you and looking forward to celebrating with you when you are on the other side of this!
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Praying for you especially this day. May the Spirit indwell you and bring comfort as you enter this process. Thanks as always for the pictures of the little ones that are so dear to you and Lindsey.
Andy
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