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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #81
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    Day +9. The bottomless source of mucus dried up last night. Did a mouth rinse and noticed that I had some healthy mouth sores. Mouth pain must have been masked by the pain of swallowing. They all seem to be healing nicely and are not concerning. None of them are ulcerated like the ones I encountered during CHOP.

    Counts are in and I am approaching a ticket home! WBC 0.97, HGB 7.4, Platelets 9. Platelet count triggered a transfusion this morning. Going off all pain meds shortly. Discharge plans are being reviewed, Perhaps as early as Sunday!

  2. #82
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    Seems like it's all good news! Very happy to read about such a speedy recovery. I hope you do get to sleep in your own bed by the end of the weekend.
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  3. #83
    Super Moderator Top User po18guy's Avatar
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    Good on ya'! The sooner the better.

  4. #84
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    Day +10. Thanks for all off the encouragement!

    Came off all pain meds yesterday. Had several bouts with the runs which they predicted would happen after coming off the meds. All IVs are now off and I have lost my dance partner.

    Counts came in this morning and the nurses are predicting that I will be going home tomorrow. Final Box Score; WBC 5.39, HGB 7.8, PLT 23.

    I am very weak. I can move around a little and then need to rest. Since Sunday I have had nothing to eat. The last several days I had several cups of Manuka Honey tea to help heal the throat sores and my wife brought in some strong, home made, roasted bison bone broth.

    This morning the throat sores have healed to two small spots. My body is telling me, "no more Manuka tea, it is time to eat something". Hope to have some breakfast, and then my wife should be here with more bison broth.

    One year ago I was coming home from finishing a backpacking hike with my two sons. Twelve miles into the Havasu Falls Canyon, several days there, and then back out. This has been a canyon of a different depth and not so scenic, but homecoming will be even more joyous!

    I am excitingly celebrating that I have regained the ability to flex my toes on both feet following CHOP. At this point, I notice no additional physical effects from the transplant other than muscular and skeletal weakness from time spent reclining.

    So, breakfast was one of the hospital omelets. Unfortunately they tend to be a little rubbery and are delivered at an uncertain temperature. So I also ordered a bowl of cream of mushroom soup. Yes, I finely diced the omelet into the soup! It restored some moisture and temperature and made everything easy to swallow. I even discovered that the soup was an excellent medium to coat and swallow the extra measure of potassium pills they gave me!

    Discharge coordinator just stopped by and, if they can get it scheduled, the triple port is coming out today and I will be going home today.
    Last edited by jwessel; 10-12-2019 at 01:50 PM.

  5. #85
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    Wow! Congratulations on making those are giant strides. Keep the good news coming.

    PBL

    PS: No wonder you took all those falls in the bathroom if you were dancing the waltz in there!
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  6. #86
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    Day +11. Extremely thankful to be continuing my healing at home!

    The Hickman Port came out yesterday. One of the disadvantages of it going in early is that my body had grafted in. It took 30 minutes of plyers and chisel work to finally get it out. Put finally, out it came and I was discharged.

    We made it home around 4pm. I was able to walk around our property a little. Most of the first few hours were spent in shock that I was actually home.

    Dinner was a wonderful bowl of lentil and roasted butternut stew. I am blessed. My wife is a wonderful cook. As a repeat cancer survivor her body has been subjected to a lot of caustic treatments. Over the past year she has been on a relentless quest to understand how she can use nutrition to heal some of the lingering digestive and health issues caused by these treatments. She as adopted; "The Living Kitchen - Healing recipes to support your body during cancer treatment and recovery" by Tamara Green and Sarah Grossman. I am well cared for.

    Lingering gastro issues from treatment and from coming off of pain meds. Minor throat pain when swallowing from lingering mouth sores. Up and walking around the house frequently. Walked around outside the property. It is a spectacular autumn day, leaves are starting to change color and fall.

    It is starting to settle in that I am actually home and that the journey onward is about to begin.

  7. #87
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    Nov 2017
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    Great news...and on a Sunday somehow makes it even better.
    Nothing beats home cooked food and the comfort of out home, hope your body recognizes that and improves your recovery.

    Take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

  8. #88
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    Reflections

    Jotey, thanks for your encouragement!

    This stage of the journey seems to be coming to an end. Outpatient follow-up called this morning and wanted to see me today for a follow up. Seemed annoyed that I had somehow managed to be discharged early!

    I am in debt to the multitude of people who have lifted me up and supported me through this process.

    I have been blessed by the deep sense of peace I was given to make this journey. Part of this was through acceptance that a wisdom far greater than mine had selected that this was the appropriate time and challenge for me to face at this point. It was not a result of something I had done, I was not a victim, it just was.

    When I was told that, untreated I had four to six months to live, and I realized with the "B" symptoms those would not be pleasant four to six months, I told my wife that I did not know how many good days I had left, but that I wanted as many of them as possible to be "happy days". Upon reflection, I realized that my happiest days were days of gratitude and thankfulness. I determined to try my best to wake up each morning, and lay down each night with a thankful spirit. I realized that I had spent too many days and years focused on what I was going to do or get next. These were not necessarily happy days. The percentage of "happy" days during this journey has far exceeded that of preceding years.

    To help focus at the start and end of each day I put together a play list of "Morning Meditation" and "Evening Vespers". These are an eclectic selection of old hymns which have sustained people along the way through far greater trials than I was facing. If you are a Spotify user you can find them under jw3950ev. My favorite of these is a song written by a lady during the time of Luther, "Be Still My Soul".

    "Be Still My Soul" is a song which connects to my childhood. Growing up in colonial Africa not many months would pass between times we would find ourselves standing graveside of someone who had passed due to illness, accident, or martyrdom. Or we would hear of troubles in the Congo or of the nearby Maw Maw uprising. At those times this song would be sung, so I have a deep connection to it. It helped sustain me.

    The next steps in this journey are to regain as much strength and capability as is allowed me. That will be an exciting exploration. And the wait to see what level of cure and how many years this treatment has provided. To best equip myself to face the next storm when it comes.

    I will be checking in frequently, but not posting as often. Hopefully the posts would only have become monotonous!

    I hope anyone, or those having a loved one, facing this same storm will find something of use in my chronicles.

    Very best all!

  9. #89
    Senior User
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    Lovely post! Thanks for sharing your reflections.

    Perhaps Outpatient follow-up were not so much annoyed, as surprised at your early discharge… Do be extra cautious while your immune system is re-establishing its functions.

    The journey continues. Looking forward to reading some periodic updates on your recovery.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  10. #90
    Senior User
    Join Date
    Jan 2015
    Posts
    272
    congrats on your homecoming!! And thank you for your lovely words and thoughts. One of the reasons I became an oncology chaplain was because I was profoundly interested in hearing people's life stories and during illness and health, what sustained them, gave them hope, and how they developed a "wisdom" during their trial they might never have known before. I love your story about your early days in Africa and singing Be Still My Soul - one of my favorites as well. I am a lifelong Episcopalian and while I don't have a playlist, I'm sure my list of hymns would be very similar to yours! Have you read the Poisonwood Bible by Barbara Kingsolver? One of my favorite books and I'm sure you probably have since it is about a Baptist family living in Africa, I think during the 1950's. Thank you also for the name of the cookbook your wonderful wife/chef uses! I'm going to get it for Christmas for my sister whose husband is dealing with multiple myeloma. I believe that all of your life experiences led you to find your strength, gratitude and thankfulness. Especially when you mentioned your hiking experience with your sons. Challenges such as this hike of this length in the great outdoors gave you an experience from which to draw on. And I'm sure you have many more. Good luck to you in your recovery. I pray for your health and strength to improve every day and for you to have many years of life. Please check in every now and then and let us know how you are doing. Even though my brother is doing extremely well after his allogenic transplant, I still check in because we need others to hear the good as well as the bad.

 

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