Update

Hospital…Yeah!

Do you hear what I hear?  The guy across the hall hacking and wheezing?  The steady beeping of a neglected Alaris PC 8015 series I.V. machine begging for a reset?  The impossibly loud door clicking open and shut just as you fall asleep?  Or the automatic shuffling of the mattress’ bed sore prevention system as it rises and falls through the day?  That’s right.  It’s hospital sounds!  And we’re enjoying a little well-deserved time off at the prestigious Miami Valley Hospital in Dayton.

Kidding aside, we’ve been here for a couple of days, but we have a plan to get out, and I’m optimistic about it.

Two days ago, the night of the 12th, Lori was up all night long with very bad pain up and down her legs and in her knees and lower back.  She rated it an 8-9, and there was no sleep for her that night.  Literally none.  She paced around the house and tried to lie down but no position provided relief.  We doubled up the frequency of oral pain medication but the pain persisted.  So, at 6 am we headed into the nearby ER.  She was admitted with a plan to control the pain spike and to start a blood transfusion to fix low hemoglobin levels.  They transferred her to the downtown hospital because the pain clinic is co-located, and that seemed to be the focus of her issues at the time.  She got another ambulance ride so she was thrilled with that of course.  The nerd is strong in that one.

She was assigned a room, and she’s been here at MVH since.  Yesterday, after the transfer they immediately began the blood transfusion.  In fact, by the time I arrived to her room, the first bag of blood was well underway.  The pain clinic nurse also arrived, and he upped her pump output by 10% which had little effect.  They aren’t willing to increase the output very much at a time because overshooting the need is apparently a really bad thing to do.  It’s understandable but still frustrating.  Her pain decreased a bit but hovered around a 4 or 5 all day.  I decided to sleep at home last night because there is no bed in the room.  In fact, there’s not even a reclining chair.  Also, we figured Lori’s pain was much better controlled and the spike of the previous night was unlikely to occur again.  We were wrong!

She had another bad night with ratings of 7-8 in both legs.  The next morning (today) she felt better but still had throbbing legs, knees, and back with a constant pain rating of 5.  Starting at 10 am , they took her for a series of 3 body scans.  The first was a lumbar/sacrum MRI, the second an abdominal MRI, and the third was a chest MRI.  After the MRIs, they delivered  her to PET scan. Those lasted for approx. 5 hours combined, but just before her last scan, she texted me to exclaim that her pain was down to a 2-3 all over!  Whew!  Relief.  Soon after she arrived back to her room, her radiation oncologist Dr. Hale called.

He wanted to discuss the results of her brain MRI from a few days ago (Wednesday).  Unfortunately, the results are that there is disease progression in her brain but the traces are still very small.  In fact, they are too small to target with precision radiation.  He wanted to discuss the possibility of whole brain radiation, but first he needed to more thoroughly examine the scans.  He drove over to MVH and met with us.  In fact, he pulled up the scans on the room’s computer to show us the images showing the tiny traces of the disease.  Lori’s inner nerd perked up again of course, so that was fun for her to see.  In the end, it was agreed upon by all that radiation is not needed at this time.  There is no immediate threat to life, and radiation would mean delaying chemo for the rest of her body.  He also showed us the results of the PET SCAN and the MRIs from today.  They showed disease in all the places that we already knew about, but they also revealed that the liver has expanded greatly in size.  We don’t know exactly why, but it’s safe to say it’s cancer-driven.  Lori can actually feel a bump forming below her ribs in her belly on her right side.  We didn’t know what it was, but apparently it’s her liver expanding below the rib line!  Also, there is fluid surrounding her left lung making it appear about half the size of her right lung on the scans.  The scan image was cool by the way.  It looked like a strange glowing transparent ghost person with organs floating inside.  Anyhow, for those who have been following Lori’s journey through the past year, you might recognize these symptoms which basically mirror her problems that we saw last May.  Check out the site’s Timeline feature with pictures of her having her lung drained.

Soon after Dr. Hale finished up, her oncologist Dr. Marinella arrived, and we discussed a plan for starting a new treatment.  He agreed with Dr S’s plan that Xeloda is the best chemo available for her now.  We’re also going to stay in the hospital one more night to be sure the pain is down for good.  Tomorrow, she will get one more scan of her upper spine, have the fluid around the left lung drained, and complete one last consult with the pain clinic bubbas.  We fully expect she’ll be discharged sometime in the afternoon.  Also, I’m staying with her tonight so she’ll have someone here in case she needs to work through pain problems.  It sucks to be alone and hurting, and I don’t want to mess that one up again.  Finally, she will start Xeloda chemo tomorrow.  It’s an oral medication this time so it’s nice she won’t have to go in for infusions.

I think the plan is good.  We’re moving forward with more confidence because we’ve been through this exact same thing before, and she recovered very well to live a great life for the following 8 months which brings us to present day.  I see no reason that can’t happen again.  In fact, this hospital stay so far has been a cinch compared to last May.  We have some good things planned for next week when I’m on leave.  All things considered, we’re doing pretty well.  Praise God.

23 Comments

  1. Thank you so much for providing us with so much information, Mark. I want to be there with y’all so very much. It’s hard being so far away. Allowing us to take this journey with you in a small way feels so much better. Y’all are in my heart all day, every day ? Please give my nugget a juicy kiss ?

  2. Praying for you and your family. Kristy and Phil Beauchamp

  3. Thankful for updates from your mom and you. Our prayers for “abundantly more than I know to ask or think” continue for each of you. Love you, Billy and Ruth

  4. Hugs and prayers every night sent your way from Wisconsin!

  5. Praying and praising! Love you guys!

  6. Robert & Teresa VanHoose

    January 14, 2016 at 9:51 PM

    You are both in our thoughts and prayers. Lots of love!

  7. Love you both

  8. Grace and peace to yo, Lori and Mark. Praying that God’s presence will fill Lori ‘s hospital room tonight.

  9. Jaimie Christian

    January 14, 2016 at 10:57 PM

    Mark and Lori,
    I will be at MVH at the Berry Breast Center with my mom for a Biopsy…I would love to stop and in and say hello. I realize the time might be less than ideal but I just wanted to let you know that I am thinking of your both and your family and pray for you both constantly. Her procedure is at 7:15 am and yes I know that is EXTREMELY early but if you are up for a brief visit and hello please call or text me at 937-684-2157.
    Many hugs and prayers,
    Jaimie – KWF Dayton

  10. Mark, thank you for these specific updates! I love your details and you Always make me smile reading them… Even in the midst of a serious matter. I’m so thankful for the peace and confidence you both have in this plan to move forward. I’m praying this is a pain free and restful night for you both. Sending my love to LJ….

  11. Prayers are with you all through these trying times!!! God bless you all and your amazing strength ????❤️

  12. I echo Sara in thanking you for such a detailed update. I’m so glad to hear that Lori’s pain is down. I’m praying for a peaceful night for both of you!

  13. Mark thanks for the detailed update you know I love all the details. Praying tonight for low pain and leaving the hospital. Love and prayers always !!

  14. John & Paulette Colson

    January 15, 2016 at 5:56 AM

    Just when we feel our own trials and concerns are enough to keep us from sleeping and worrying with concern, do we receive the message of God’s grace. Your strength is remarkable and your focus is admirable! With the joy of the Lord in your words and complete faith you are far beyond the rest of us in our own personal journey. Our prayers will be for God’s grace for the continual deliverance from pain and the peaceful rest your bodies need. With our love and concern. Uncle John and Aunt Paulette

    • Mark Jones

      January 15, 2016 at 7:22 AM

      We’re not far beyond. I think I should write more often about our failures. You’d be much less impressed!! Thanks tho guys

  15. Thanks, Mark! I’m really hoping last night was pain free! Lori is certainly a strong girl! Praying today’s procedure is quick and successful and you guys can go home!! 🙂

  16. Linda and David

    January 15, 2016 at 7:47 AM

    Continued prayers pain control and complete healing.

  17. Adrianne Tanner

    January 15, 2016 at 8:33 AM

    Thanks for the updates, guys! It’s been a long time since we were stationed together but the Tanners are praying with you.

  18. Keep staying strong. Love Lori’s inner nerd and all y’alls strength. Here’s to another 8 months + ! Prayers always!!! Thanks for update.

  19. Thinking of you all tonight. Love and prayers to you all.

  20. Well, if cancer has taught is anything, it is that you are both great writers with scarves of humor and a serious faith. That first paragraph especially deserves some literary accolades. In all seriousness, the fact she is in this much pain overwhelms me. I was sick recently and in an enormous amount of pain. I couldn’t function. I wanted it over immediately. I don’t even know what to say about the amount of pain she is in except I feel terrible and empathetic. I imagine it is exhausting for both of you. Keep up the great work and here is to the next 8 months!

  21. Oh my. So many mistakes. With great sense of humor not scarves

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