Friday, March 27, 2009

John's Battle with Zoster

John and I have been in Hershey for the past several days. From Sunday through last night. That's the reason you haven't heard from me. I didn't have time to post because John had six medical appointments, and I of course accompanied him.

Overall, during his appointments this time at his bone marrow transplant center, John fared pretty well. He received better news than we both thought he would. John does have fungal pneumonia, as we suspected, but it has greatly improved according to the report given to us by one of his oncologists. The report was a result of a CT scan John had this visit to his oncologists. It was very reassuring to know he has greatly improved, as fungal pneumonia can be serious.

John has had viral and fungal pneumonia since September 2008.

John contracted the viral pneumonia in Sept 2008 when he was taken off Valtrex, a medication he takes to prevent viral infections. I remember sitting in Dr. Claxton's office last year, as he stated, "You can stop your Valtrex now. I'm sure you won't catch shingles at this point, this far out from your transplant."

So John went off the Valtrex, then promptly turned around and caught shingles! I don't know if participating in the Light The Night Walk, to raise money against blood cancers -- such as Leukemia -- had anything to do with John catching shingles. We were around thousands of people that night. Who knows? He may have gotten shingles anyway, because he was no longer taking the Valtrex.

John at Light The Night
Walk in Sept 2008

A few days after the Shingles started, John noticed Chicken Pox. Yep, Chicken Pox. His immunities had been wiped out by the bone marrow transplant he had had over two years earlier. Those who have a bone marrow transplant literally have their immune system wiped out, and they have to get their baby and childhood vaccinations allover again.

John with Shingles in Oct 2008

So on the last day of September, off John and I went to Hershey Medical Center, because he had very severe Shingles and Chicken pox. We went by ambulance, as I have narcolepsy, and I just can't drive. John was admitted, and we ended up having to stay in Hershey most of October. By the end of the visit in October, before leaving the hospital, Dr. Claxton told John that if he had waited another couple of days to come in he wouldn't have made it...

John said shingles pain was a 9.5
on a scale of 1 - 10.

John was admitted again to the hospital in November for Zoster Pneumonia. The Zoster (Shingles Virus) just wouldn't quit.

John with Zoster
Pneumonia in Nov 2008

John was discharged from the hospital and we got home the last week in November. I spent Thanksgiving and its surrounding days giving John IV infusions of viral medications -- through a port (PICC line) that had been inserted at the hospital -- to try to end the pneumonia caused by the shingles and chicken pox. The IVs were around the clock. There was no time to make anything for Thanksgiving, but we were just grateful to be in our own home...

John getting IV antiviral at home

I'm not real sure why the oncologist (I'm not referring to Dr. Claxton, but an oncologist subbing for him) let John out of the hospital before the pneumonia was cleared up, in the first place. I remember John feeling pretty poorly when he left. On second thought, I do know the reason, I believe, that John was discharged early by Dr. E., but that's a post for another day... I'll tell it later.

During the months of hospitalizations and home treatments, John just couldn't seem to get completely better, and just couldn't seem to get over his fevers and pneumonia. The viral medications he was given orally and by IV weren't improving his health completely. As a matter of fact, John hasn't felt significantly better until this month -- March 2009...

This is because, it was discovered, John also had contracted fungal pneumonia. The doctors were able to ascertain this by the pattern the pneumonia formed in his lungs. John had x-rays and CT scans which showed "multi-focal pneumonia."

Anyway, as I stated, we're thankful that per the report we received, John is doing so much better now. He will have to live with some permanent damage to his lungs on both sides. One issue is scarring. He has had some difficulty breathing, tires easily, and can't take in full breaths at times.

But I'm very thankful John's making great improvements, and it appears that things are looking up from here. I'm glad he's out of the woods!

I finally feel that we are out of a long, long Winter, and Spring has finally arrived.

Love you all, Krissy :)


  1. thanks for the update, give john a hug for me, and one for you! Its good to know he is starting to feel a bit better and that their seems to be an upturn in his health. In the last photo where he is alseep on the couch sitting up he somehow looks child like and cute lol... its a sweet photo. When I was in the hospital getting my chemo there was a boy that was probably four or older but he was bald, in a stroller and going to get treatment. My friend with me saw his face and we were struck sadly that this little kid not a baby anymore was totally a little helpless baby still as a result of his invasive treatment. My friend said god I want to pick him up and just hold him so he doesnt hurt anymore. The picture of John there reminds me of the kid/baby and how people are so struck by cancer... it was somehow both beautiful and so very tragic... its nice when its NOT just tragic as is Johns case with some hope but it still inspires in me the desire to hold the person and give them comfort.

    Deirdre the sister of ...

  2. (((Krissy))) thanks for the update about John; both of you have been through the ringer these past 6 months. I'm glad though that the doctors have answers at least with what is going on with John; thanking the Lord for that; I've been praying that the doctors will find out what's been going on with John, so thank you Lord. I'm sorry though that he's had such a rough time and will continue to have a rough time in the days ahead. You are both such troopers to put up with all that you have to do; I know it is so wearing on both of you; you are both in my prayers


  3. You really have had a long winter. It makes my whines about winter so very insignificant for sure. I'm praying for both your sakes that John is truly out of the woods now and that you can enjoy Spring. Easter this year will have new meaning. You are in my prayers ! 'On Ya'-ma

  4. I just read what Deirdre wrote. It was beautiful. So it does seem like some Spring may be around the corner in your lives. I can feel it =). Thanks for the post, my sissy... I love you two more than you know... Hug John for me today. Bunches of smooches, Val xox

  5. (((((((Krissy))))))))))))))

    My prayers are with you both


  6. Can't think of anyone more than you both that I hope have a truly, beautiful spring season. You both are always in my pecial thoughts and prayers.

  7. Best wishes to you both. You certainly deserve better things to start happening for you. Be well.

  8. Thanks for the update, my friend. We are just so grateful that John has you to hekp him thru this ordeal. I know you both must be very tired of doctor & hospital visits. Hopefully, his health will improve to 100% soon and you can take time to just enjoy life. Hugs to you both...Linda in snowy & cold western Washington

  9. oh krissy,im so sorry.glad he is improving.i caught chicken pox 3 years ago,damn nigh killed me.never,ever felt so ill in my life.oh,ok heart attack my thoughts,love mort xx

  10. Those 'opportunistic' infections are a major headache if nothing worse for anybody in John's position, Krissy. He has done extremely well in recent times, but it's not been an easy ride by any stretch of the imagination.

  11. I found your blog on After Cancer, Now What. I'm a cancer patient who has traveled around the U.S. interviewing other patients for my new book Everything Changes: The Insider's Guide To Cancer in Your 20s and 30s. I met so many patients who were single and aching for the love and care of a spouse. It is incredible reading your blog and seeing how much love and devotion you've got going on here. Cancer is so stressful and taxing both on patient and caregiver. You guys are clearly lucky to have each other!

    blog -

  12. I don't think there will ever be anything you guys can't handle.... :)
    Have the most blessed Spring!!!

  13. You guys have really had a rough time, I'll keep you both in my prayers. Been doing a lot of commuting back and forth to philly with my husband, who has throat cancer...gets to be like a blur after a while
    take care

  14. I'm Brittany, You left a comment on my blog Wind Chimes At Midnight today...

    I'm sorry by I don't have any music Playing on my blog!!!!

    Not really sure what you are talking about!
    Are you just going around leaving the same comment on everyone's blog so that you will get more readers? LOL.

  15. hey krissy
    i found a link to your journal and wanted to come say hi
    its been some time since ive seen you around. prob since the aol days
    thinking of you and john

  16. I was gonna have like 94 followers, isn't that enough??

    It just looked to me that you didn't really read my blog you just left a comment with a whole bunch of your links and a comment about music that made no sense. LOL....I was like what in the hell??

    Have a nice day.

  17. In response to Brittany above -- I did read two of the posts on your blog (the first two) before I commented, left what I thought was a good comment, and left the links I always leave -- they're auto links. You implied I was commenting in your blog to get "followers." I don't do such a thing! But thanks for inquiring, Brittany, and allowing me to clear that up!

    krissy knox
    author of this blog -- Sometimes I Think

  18. You've had a hard winter... I was glad to see a post from you, I've missed you guys! I'm following both you and John on Twitter, so maybe even if you don't have time for a blog post I'll still know what's going on with you guys!

  19. Thanks for the email link to your journal. I am glad that John is better, sorry to hear he had such a hard time. I know from personal experience how hard being the spouse of an ill person is.
    I disagree with whoever said you should keep quiet about painful things in your journal. first it's your journal, second those of us who pray can be more specific in our prayers. Besides you need the emotional support in those very hard times and you need a place to let those feelings go. Anyway, I am glad I have your link again and will be praying for both of you.
    Here is the link to my journal.


  20. Hi Krissy, I got your email... I came right over as soon as I read it. It's been a difficult year indeed, and John has had several close calls... I am so glad he is improving. I agree with Barbara... it's your journal, and you can write whatever you need and want to write. It is good that you can find emotional support through your blog... I've been away, too, but not for reasons as serious as yours. Since I don't post regularly at A New Bridge, it takes me too long to get a post out. Not like when I was at aoljournals... I could whip those entries out pretty quickly, even the ones with photos. But now everything is so new and strange. I know if I posted daily, I'd be quicker, but I really don't have time right now. I just wanted to let you know I am praying for John and for you. There is a sign down the road. I see it on my way home every day. "If all you have is God, you have all you need." You are never alone! bea

  21. I knew some of what John was going thru the past months and have had him in my prayers. I loved reading about John's treatments. Never stop writing. I'm glad to hear you're going to blog again!

    I've changed the title of my blog. I'm still writing on a regular basis. Come and visit me.

    Or just click on my picture and follow the link! LOL

  22. I am glad that at last things seem to have turned the corner and that John is on the up and that all the prayer seems to have helped. Hugs.

  23. sending you & john some love & prayers from mo.
    sorry to hear it conts to be so rough, at times, for you guys. poor john, he never gives up, & neither do you...God bless you both.

  24. Keeping John and you in our thoughts and prayers.

  25. Hi Krissy, You and John have been through so much, I admire your strength. Please know that I will continue to keep you both in my prayers.
    I have not kept up my journal since J-Land either. Maybe one of these days ,I'll get back to iot. Can't find most anymore. Love to you both. Dawn

  26. It looks like you and John have a lot of people who love and care about you. I know how important that is when we a faced with the tough times in life.
    Know that I am thinking about you

  27. Hi, Krissy! I read your email and wanted to send you a reassuring note. I'm sure that John is so grateful for having you as his Angel. And you are an Angel, you know! I think your post is fine and the photos are ok. I find it helps to write about things that are going on which are challenging to us. I think you are very brave, courageous and kind. I loved one of the comments which had the hugs around your I'm sending you both hugs and good thoughts and prayers: (((((Krissy))))) and (((((John))))))......Maria

  28. Hi, Krissy! I stop by your blog now and again to see if you’ve posted, though I don’t always have time to leave a comment. :-) Glad to see you posting again, and very glad that John is doing better now. So sorry you’ve had so many struggles to face these past 6 months. You have been in my prayers. Please don’t feel you need to face these things alone--if you and John need prayers, even if you don’t want to say why, please drop me an email. Sending hugs and prayers to both of you!

  29. I have never heard of anyone surviving all John has, it must be because you seem to love him so much and so he gets better. Good to hear from you. Gerry

  30. Gosh, I am so sorry that John has had so much trouble. I hope he continues on the road to recovery... Linda

  31. Krissy, I am so sorry. You two have had a rough time of it. I am sending prayers and good thoughts for you to have a little break. take care.
    Lisa (lisita15)

  32. ((((((Krissy,John))))))) I was so glad to get this email about your blog. I had lost touch with you guys after aol booted us all from jland. I am sorry to hear John has been so ill. I will put him in my prayers. I'll add myself to your list of followers so I can keep up with you and you me. God Bless you both.

  33. I hope y'all are past the worst of it now!
    God Bless

    (Though I haven't updated in about a month!)

  34. I am so sorry that John has had to go through all of this. And you poor thing, it is so tiring taking care of someone that is sick and being at the hospital all the time. I pray that you will get some rest and that John will start having days where he feels like a kid again (well, close to that anyway)

    I too feel that I have lost touch with so many, I just haven't had the time to leave comments everywhere or read tons of journals like I used to. Too much has been going on this past year and presently for me to be around much.

  35. Hi Krissy, I often think of you and John and how things are going with you both. I`m sorry to hear that John has been going through so much lately. Shingles is dreadful I know as my daughter and hubby had it and suffered a lot of pain. Poor John has to deal with so many other things as well and it seems so unfair, Take care both of you and I pray that John will get over his pneumonias soon and enjoy a much healthier Summer.

    Love and Hugs

    Sandra xxxx

  36. Hi John,
    My own wife, Sharon L. Schuckman is barely hanging on after open heart surgery in WI 10 days ago when her lungs were only putting out about 37% of the normal rate of air displacement. She is in constant pain and discomfort-- and all that weighs heavily on my heart too.
    Hi Krissy,
    Thank you for all your prayers and warm wishes. We still need tons of prayers for my dear wife, Sharon.
    God Bless you and your family.

    Tom Schuckman
    Union Grove, WI
    Disabled Vietnam Veteran: 68-70.

  37. Dearest Krissy. I cannot tell you how sad your email made me. Not because you sent it, honey, but because you've been through so much and were feeling so alone. I know how that feels. Lonely grows might heavy, I know. I am so sorry John is having so many problems, is so sick, but know the LORD sees all, and is with Him as He is with you, with us all. I love Genesis 28:15, "And behold, I am with thee, and will keep thee in all places whither thou goest, and will bring thee again into this land; for I will not leave thee, until I have done that which I have spoken to thee of."
    And Isaiah 41:13 says, "I the Lord thy God will hold thy right hand, saying unto thee, Fear not: I will help thee."
    Be encouraged, my sweet Krissy, knowing how much you mean to God, how much HE loves John as well. He has brought you and John through many dark, stormy night, has wiped your tears when your hearts were low upon the ground, has strengthened you, kept you ever at His side. He is as near as your breath. Nobody loves you more, my friend. I do not know who told you it is best to not be so honest in your journal, to soften your words rather than be honest and open. I would encourage you to express yourself more, to be as honest as you need to be (regarding pictures and such). Do what is best for YOU, Krissy, what YOU feel helps you the most. Please email your home address so I can keep in touch, if you don't mind.
    I am going to put you and your sweet John on my prayer list and ask others to do the same. God bless you, honey.
    Love you so much.

  38. That poor man, Kissy! I feel for him greatly. It has been some coaster ride you two have been on all these months. May his lungs get stronger in Jesus name. I haven't blogged forever either. I just feel so humdrum about it. Have lost all connections too. Maybe I will get back into it. I don't know. Thanks for contacting me.

  39. Hi,Krissy. I was wondering how you've been and if you ever came over from AOL. I just visited Gunner's post and saw your comment there.

    I was wondering about John, too, since the last time we commented he was sick. I'm so sorry this is a long, dragged out thing for you two.

    My prayers are with you both.
    Cliff (River)

  40. Hi Krissy,

    I finally got to catch up and so very happy to hear that John seeems to be out of the wooods now. Dutch had Shingles so I know how bad that can be, but with C POX at same time sounds awfully hard.
    Hope you are both able to enjoy some of the buds popping out and blossoming trees!

    Love and prayers for health,

    PS. since Easter is a time of such Hope and renewal in Christ, I hope you are both able to feel some of that too. xox

  41. Happy Easter to you and John.Easter is a wonderful time to renew our faith in the Lord. I pray The Lord our God is looking down on you two. Oh Krissy, when you speak to the Lord ask him to put your number to the back. You guys had enough for awhile. ]
    Love You both You 2 are always in my prayers....

  42. Krissy,
    B L O G O N.......
    My prayers go out to John for a complete healing and for you for strength and peace.

  43. i haven't stopped by in a while. i hope your both doing well.



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