I, I Will Survive

This Should be Interesting
I’m hopped up on pain meds so we’ll see how this update goes.  I know some of you have seen updates from Lindsey on Facebook, but I’ll catch everyone up on what’s been going on since the last post.  This current stretch is about surviving, which reminded me of an animated video from 1999.  You remember 1999 right?  Al Gore’s internet was starting to take off.  Personal computers were in more and more homes.  My roommate Ron was stocking away Y2K water like there was no tomorrow.  And this video was produced.  By today’s standards it amateur, but back then this was cutting edge stuff.  My goal is to avoid the Disco Ball 🙂

Where We Left Off
We last left off on Day +2 where the nausea was bad and the leak in the backdoor was even worse.  The good news is the nausea is under control now.  I was getting nausea meds as needed (when I asked) but then we switched to automatically giving me the med every 6 hours.  That’s made a big difference.  As far as the diarrhea goes, that is better too.  Previously I had been getting up multiple times a day, heck, multiple times an hour.  Once the C Diff came back as negative, I was able to take Imodium to bring things under control.  The backdoor is still leaking a bit, but is much more manageable now.  Diarrhea is an expected side effect and will probably be ongoing, even when I go home.

The green light means Mr. Alaris PCA is ready to give me some pain meds.
The green light means Mr. Alaris PCA is ready to give me some pain meds.

Day +3, When I Lost the Ability to Pee (on command) 
The big event of Day +3 was getting my PCA pump.  PCA stands for patient controlled administration and is what I’m using to give myself pain meds.  Throughout the day, the pain in my mouth was getting worse and worse.  To the point when I’d try to drink I’d just grimace in pain as I swallowed.  I had been rating my pain as 1’s and 2’s to begin with but the mouth sores were creeping up to 5 and above.  We of course were expecting mouth sores, so it’s not a surprise.  But it’s also not fun.

I started out on 0.2 mg of Dilaudid every 15 minutes.  I’m currently on a dose of 0.4 mg now.  The good news is that I can drink without wincing.  The bad news is Urinary Retention is a side effect of Dilaudid.  I haven’t dealt with this before, even though I’ve had Dilaudid before.  Basically it means I feel like I have to pee, but I can’t go.  The Dilaudid is messing with the signals between my brain and Bernie the Bladder.  The good news is that once Bernie is full of it (and boy is Bernie full of it JenSim) then he’ll release the urine.  I’m not incontinent so it’s not like I’m peeing on myself.  But I do find myself standing for minutes at a time trying to go with no luck.

Day + 2^2 and Day +5
That pretty much catches us up to today, Day +5.  Main issues are mouth sores and being sleepy.  The pain meds make me sleepy so I spend a lot of quality time in my bed.  After losing about 10 pounds I’m holding steady on weight.  My mouth is dry most of the time, but that’s because I’m having trouble breathing through my nose.  Oh, nosebleeds.  I forgot about the nosebleeds.  My platelets got down to 8 on Day +4.  Normally they are 150-450 and anything below 10 requires a transfusion.  They gave me platelets in the morning, but I had a nosebleed in the afternoon.  There was a really big/cool clot I blew out, but unfortunately I didn’t get a picture.  After the nosebleed they did another platelet count and I was again back down to 8.  So this time they sent a double bag of platelets up and that did the trick.  I have to be careful blowing my nose though, thus it gets stuffed up and I become a mouth breather.

My Sweet Niece KaileyIMG_5307
Last week my niece Kailey’s school had “dress like your favorite Hero Day”.  As my sister Michelle tells it, “All on her own, Kailey came to us a few weeks ago and said she wanted her outfit to honor her Uncle Rob and that he is her hero because he is bravely battling (and winning!) against Leukemia for the second time.

It’s amazing what might seem a simple thing can lift the spirits.  So for hero day, Kailey went to school in a Robstrong T-shirt, an orange ribbon in her hair and an bracelet. Love you Kailey!

And the Powerball Numbers Are:
My whites bottomed out on Day +4.  I suppose they could dip down again, but there were up a bit on Day +5.  The official measurement was <0.2 simply because they can’t measure below .2.  My hemoglobin is holding steady, which is fine with me because it might mean I won’t have to get a transfusion for that.

10/19/15 (Day +3):  WBC 0.2, Hemoglobin 12.4, Platelet 24
10/20/15 (Day +4):  WBC <0.2, Hemoglobin 12.3, Platelet 8
10/21/15 (Day +5):  WBC 0.3, Hemoglobin 11.1, Platelets 24

A Duck Dynasty Prayer
Thank you God for getting me this far.  Thank you for helping me to weather the storm.  I strive to praise you in this storm for this won’t be the last trouble I face.  May I condition myself to rely on you.  To build my house on the rock and not the sand.  When faced with a choice, may I choose you over and over and over again.  Thank you for another day.

14 thoughts on “I, I Will Survive

  1. It is soooo good to receive your post!! Thank God you feel well enough to post, and good that you know to sleep when you need to sleep. Grateful you are able to take fluids, and grateful for the good care you are receiving. You have so many well-wishers and prayer warriors, and God is with you through the storm!!!! So am I!!!!! :). Love you, Mom

    Liked by 3 people

  2. Good to hear from you. Frank has been asking all day if there has been an update . I am sorry you have to have any of those side effects but we all know it is part of the process. With the cardiac problems Frank has had problems with swelling and has become quite fond of Lasix. He says for a man there is nothing like a good pee. So I know,it must be quite frustrating to feel like you need to go and can’t.
    You are truly a hero for alot of people Rob. Your outlook, your continued good humor and your strong faith inspires,many.

    Keep up the good fight.
    Love ya Aunt Liz and Frank

    Liked by 1 person

  3. Rob
    Good to see you post again! That says a lot to us who are watching your journey from the outside. Stay Strong! Prayers for your recovery and that you will be feeling great soon!

    Liked by 1 person

  4. So glad to hear your pain is being controlled. I enjoy reading Rob. I look forward to it everyday. You have a great way with words. I hope writing about your experiences, hopes, fears and faith is healing for you and that maybe you get a chuckle or two from sharing the wild adventures of Winky, Curly, Harry, Bernie and Bo Bo the booty. 🙂 In all seriousness, please know we all send prayers and well wishes for your continuing recovery and long, cancer-free happy life every day. Sending you all my best….Ang

    Liked by 1 person

  5. Great to read your post! This makes me happy knowing you are well enough to keep us out here updated. I HATE you have to go through the nasty side effects! Plow through them friend…you are a rockstar!
    🙏🏻

    Liked by 1 person

  6. Hi Rob! I was happy to read your post, because that tells me you are feeling a bit better today. Glad the meds are keeping your side effects at bay. I was even happier to learn that you neglected to take a picture of that big clot. Thank goodness! Yuck! I also noted that you included not one but TWO liberal references in your post! 🇺🇸 ✌️ I’m really beginning to believe that Dom is a liberal! Wonder if there is an ICD-10 code for “post transplant political party affiliation change.” 😜 Anyway, thanks for the shout out. I look forward to more Bernie references! 😆

    Liked by 1 person

  7. So glad they have you on something that is helping with the pain and that you can drink without wincing. We read your post to Kailey and showed her the pictures and she got a huge smile and said, “I’m famous!”
    Thinking of and praying for you so much these days and each morning when the kids wake me up to get ready for school my first thought is ‘Rob is one more day ahead of yesterday’. Praying you through these hardest days and on to the days when your body will feel strong and good again💙

    Liked by 1 person

  8. Rob,

    I’m sorry the bad stuff is happening, but I was relieved to see that you felt well enough to post.

    I remember those mouth sores. Yikes!

    I have a friend who recently went through radiation for tongue cancer. It caused serious mouth ulcers. She swished around coconut oil in her mouth, and it worked wonders! In fact, her doctor brought other doctors in to see the results. It might work for you. (Of course, you should check this out with your doctor first.)

    I continue to pray for you, Rob, and you are on the MUMC prayer chain. Hang tough! Know that you are in the hearts and prayers of many!

    ~Susan

    Liked by 1 person

  9. For just about any guy as they get up in years, and from experience, you become an expert on the urinary tract (bladder) and any unpredictable organs piped into it (prostate). What’s going on with your bladder is probably that the Dilaudid is relaxing your bladder muscles. So, your brain is saying c’mon, troops, fire away, and they’re just laying there. Not much a guy can do about it, unfortunately. But as you explained, eventually the tank gets full, and gravity takes over.

    Love, Uncle Claude

    Liked by 1 person

  10. I am so sorry for the pain of the mouth sores! BUT I am happy to see you are feeling up to writing about what is going on! I too look daily for your postings to keep up with your journey! I pray you can get through another day and soon the good days will be happening more than any bad ones! Sleep when you need to for once this is past you will have a lot of catching up to do! Take care Rob fight through this we are all praying and pulling for you! It is funny peeing and pooping is about all the “old” people we have encountered so far on our return to Florida have had to talk about to us! Just get to giggling recalling some of these conversations! Waiting for more news and praying daily!

    Liked by 1 person

  11. Thank you for posting this latest update. Rob it is wonderful you are wrapped in prayers by so many people (including the OLOL prayer chain). Keep pumping the drugs and all are praying that soon those mouth sores will heal and the DOM cells will completely take over and multiply.

    Liked by 1 person

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