Thursday, January 26, 2006

John's hospital stay

Wow.  It's been awhile since I did an update.  Of course a lot of my time is consumed with being with John at the hospital, and I have not had time to do entries as much as I had wanted.  Here is a synopsis of how things have been since John entered the hospital.

Friday John was admitted to the hospital.  He was started on chemo.  Two different kinds.  And some immunosuppressant drugs.  If I understand correctly, these are to kill his diseased cells, so when the new stem cells are introduced (when he receives his transplant), eventually he will become disease free.  Something like that.

Saturday - John felt sick today.  Very nauseous.  Headaches.  But he was still a real trooper.  He sat up in his chair all day, and he also went for walks up and down the unit hall when he was stronger in the morning.  He insisted on wearing his jeans and shirt and stayed dressed instead of wearing a hospital gown or pjs.  He continued his chemo today.  

Sunday - John felt a lot better today.  So much so that he helped the nurse decorate the unit for Valentine's Day, lol.  She had him out of the room and up and decorating!  He hung red hearts and other decorations all around!  He was quite the creative one.  He continued his chemo today.

Monday - John looked pretty weak, but his attitude continued to be great.  He had chemo again.  I hated to see him so weak.  

Tuesday - John continued chemo today.  He was also attached to a pole.  He was hooked up from the pole to his chest.  The pole has a line (tubing) that runs down it and goes into the chest port in his chest.  He has about four bottles of liquids that are dripping into his chest.  He has saline solution (or some kind of salt substance, lol) and he has immunosuppresant drugs running through the tubing into his chest port.  On Tuesday they hooked him up to the pole 24 hours a day until he leaves the hospital.  

John's hair is growing back at an extremely quick rate!  We made a joke about how he could donate his hair to the Hair Club For Men!

John was 248 lbs. when he entered the hospital.  On Tuesday he weighed 231.  That is a loss of 17 lbs. if my math is correct.  Sheesh.  They told him eat like crazy for nourishment, or he will have to go without regular food, and get hooked up to a glucose IV.  He was starting to have trouble eating a lot of food, because he says the food tastes yucky and sometimes bitter (this is a common side effect of chemo).

John got an ulcer on his tongue and a sore throat.  Sores on your tongue and sore throats (and even sores in your throat) are common for high doses of chemotherapy.  Hopefully it won't get worse.

The psychiatrist came and said John is doing great mentally.  His attitude is so good.  I am so proud of him.

Today they put up a chart on John's labs.  It showed the labwork (blood counts) that they had drawn on him all week.  One of the counts was his white blood count.  I sat there shocked when I saw it.  Normal white blood count is something like 4.8.  His was 0.6.  That is almost 0.  They told him they wanted to get him down to 0.1 or 0 I think.  That is why they are giving him the chemo and suppressing his bone marrow.  It is killing his disease.  I knew it was going to happen, but it is a shocker when you see it happen to your loved one.  It will ultimately make himbetter, but they are making him SO weak.  

On Tuesday night after visiting John at the hospital I went back to the Hope Lodge and cried.  I feel like my body is breaking down some.  My muscles hurt.  It is so hard seeing him hooked up to that pole with the tubes going into his chest.  And with all those bottles of fluid hanging down.  I thought I was so strong, but I am not.  Crying was all I could do. 

Wednesday - Today John had general malaise.  He was finally very weakened by the chemo.  They did not make him have chemo today, and will not make him have it tomorrow (Thursday).  They are giving him two days off of chemo before the transplant on Friday.  Even though he was weak, he still showered, got dressed, sat up in his chair, watched TV, and chatted with me.  I am proud of him!  The doctor said he was still their star patient!  

I wish I could say I was the star caregiver today, but I was not.  I had to leave John early tonight, because I thought I was going to throw up.  I felt so nauseated while visiting him.  I also started to get a little down.  I was there in the hospital room, looking at him hooked up to the pole (and ill), and waves of nausea overcame me.  And waves of sadness.  I know this is the thing that will save his life, but it became too much for me to handle right then.  I asked him if he minded I go.  He said go ahead.  I feel extreme guilt about it but there is nothing else I could do.  I needed a change of scenery, and I couldn't get sick on their floor.  Yes, it was that bad.  Now, I must get a grip on myself, and fast.  Afterall, I need to be there for him for the next several months.  Am I normal, or am I insane?  

Bye, and sorry this was so long, all my love,



  1. You are insane that you think you are not normal!!  Please easier on yourself.  No need for guilt!  You are the best.   My heart is with you both...

  2. Krissy, please don't feel guilty.  You are dealing with this pain just as much as John is because the two of you are in it together.  When he hurts, you hurt.  Just remember to "Let Go and Let God"...It's become one of my favorite sayings.  I'm continuing my thoughts and prayers to John and yourself.

  3. Thinking good thoughts, Krissy.  Take care of yourself too.  John has staff of hosp people to care for him.  You just need to be there for him, but you can't be if you get worn down.  Prayers for both of you...Barb

  4. Thank you for inviting me into your journal-life.  I know it is so hard to be strong when you see someone you love so much go through so much.  It's hard; but you will get through this.  Hugs to you and John--I will keep you both in my thoughts.  Keep positive--crying is good though--get it all out.  You will get through this--both of you will :)  Julie

  5. Don't feel guilty, remember one day at a time :)

    Praying for you and john


  6. Don't feel guilty, Krissy. Strength & courage is something the both of you surely  have. Take care.

    All my love,

  7. Hi Krissy,

    Great job of updating his stay so far...and I think for all John is going through and you too, you both are fantastic.  Chemo does make you sick, you have good and bad days...but this is preparing him for what the next step is to come.  From what you said and the doctors his spirit is high. that is going to make the big difference...and for you, if you feel sick...take the break needed, if only for the short are the best nurse John has, plus you are the VERY BEST WIFE!!!  Love you both,

  8. Krissy,  I am sorry for what your going thru. Crying might help relieve some stress and help you feel better.  You are being strong, you just dont see it.
    May God give you the strength you need each day.


  9. Hi Krissy, thanks so much for the update, it can`t be easy for you at the moment.  I`m glad John`s treatment is going to plan, despite him feeling so poorly with the chemo.  He really sounds upbeat and you are so wonderful with all the support you are giving him.  PLease, Please don`t feel guilty, there is no need, you`re doing great!  Take care.
    love and hugs

    Sandra xxxxxx

  10. You are normal, Krissy. Thanks for the update. The stress is hard for you; I know. You have to be cheerleader and main supporter for John and there's probably no one there doing that for you. In my prayers, I pray that the Lord will give you someone that will hold your hand during this all and be your support. He is faithful; I know he will answer this prayer.

    Hugs to you both.....


  11. John is facing the physical aspect of his treatment, and you are dealing with the emotional aspect of watching his have to take breaks.  You should not feel guilty.  He has a lot of support from the staff; you have no one.  I think it is okay to go back to your little space when you feel the need, and it sure sounds like you needed to take a break.  You are certainly NOT insane.    I think you are both doing great.  Hang on, Krissy.  You've got a long road, but you can do it!!!  JaE

  12. Krissy,
    What you are feeling is very normal.  I don't know first hand, but how could it not be.  Like someone else commented, John has a lot of support and you have just you.  It's hard to be strong all the time.  John is doing a good job of it.  Is there any support group there or a member of the clergy that you can go to?

    Sending you gentle hugs, love and prayers, Lu

  13. He is a star Krissy and so are u, it's very hard to watch a loved one in are normal!!! and a brilliant carer.  Ice pops are good for the ulcers and a baby's teething ring placed in the cold fridge.  Always your in thoughts so take care both of you.(((( )))) Rache xx

  14. You are our star Krissy - never forget that.  Your reactions are very very normal.  Wish there was something more we could do to support you. Hugs to you both.
    Sylvia xxxxx

  15. Excellent update, Krissy, thank you.  I assure you that any emotion you have is normal.  From one caregiver to another, may I suggest you drink lots of water?  In addition to staying hydrated, it will force you to take several mini-breaks to relieve yourself.  Don't use the bathroom in John's room.  Nope.  Use the one down the hall.  This will gives you the opportunity to remove yourself (momentarily) from the situation, stretch your legs and clear your head.  Even the tiniest change of scenery will refresh you.
    Thinking of you,

  16. Look in the phone book for a Salvation Army as they have ways to get you out of there even for just a few hours. I know they have a womens group that meets for a few hours I'm not sure if theirs is in the day or night but you might be intersted in it. 'm just trying to think of something that would be nice and kind of fun to get you out for a while. But please if they have one cal the Salvation Army and ask about "Home Leauge!" You are both in my prayers and thoughts!!~Faye

  17. Hi my precious love!!  Please let what everyone wrote here sink in, honey!!  Read their comments as often as you need to to know that you have support and that you ARE normal!!  You did such a good job here updating!  If you feel a need for support again, or even just need someone to say hey or hello or need a hug, leave another entry, honey!  Let J-Land be one of your supports!!  I was curious about the Salvation Army comment.  Interesting!  I would look that up.  Also, is there a social worker there that you can talk to that perhaps can connect you with help to find someone to talk to?  Or can connect you with an agency that can help you when John gets out of the hospital.  Maybe Salvation Army is the ticket.  There MUST be an agency somewhere.  Anyway, know that WE ALL LOVE YOU!!!!!  YOU ROCK, KRISSY!!!  Give my love to John again and I hope I can talk to you tonight or maybe tomorrow if not tonight.  xoxoxoxoxoxoxoxoxox

  18. You are normal Krissey its a normal reaction to feel the way youve been feeling.Don't beat yourself up about it.I'm sure you will be ok when youve got used to seeing John with the pole.It's part of his treatment and is helping him.I am pleased that he is keeping his spirits up thats the only way to be.Good luck with the op on Friday.Keep your chin up and remain positive at all times.God bless you both.Thinking of you.

    John xx

  19. (((((((((( Krissy and John ))))))))))
    Starting with a hug :o)  My dear Krissy, I don't suppose there is a 'normal' way to deal with the things that you are having to deal with at the moment.  You will cope your way, and whatever that is will be just fine.  Tears are good hon, if you kept everything inside and didn't have that release that comes with a good cry you would go crazy!  You ARE strong, yes you are!!  Next time you look at yourself in the mirror you should tell yourself that - I am Krissy and I am one strong lady ;o)
    Please tell John that we are all thinking of him and wishing him well.  Take care my dear.
    Sara   xxx

  20. I'm so proud of John too and also of you!! Don't worry that you need some quiet time and I'm sure that John does too... Just being away from home and and all the support you are giving each other takes alot of energy on top of the transplant and chemo. So don't worry or feel guilty... And remember God never gives us more than we can handle, so just one day at a time.
    Lots of hugs and love!
    Linda :)

  21. Krissy-I always told my husband that I think it was easier for me to have the chemo than it was for him to watch me.  It sounds like John is doing great!  It's ok and very normal for you to feel the way you do.  It's so hard to watch someone we love go through such a hard thing.  Take the time to take care of yourself, then you will be able to be there for John
    Hugs & prayers going out to you!

  22. Krisy, it is hard to see the one you love sick. The Chemo totally changes them..tire easily. the texture and taste of the food will chenge what they will or will not eat...what they used to eat they don't like now...what they never liked they like can change from day to day....because the chemo also is killing the good cells along with the bad is very hard to go thru...but you also need to take some time for yourself.......doesn't mean you don't love him......but you will burn out.......take the help that is offered.........I am finding that out right now....prayers for you and John.........and dont forget to take care of you to !!

  23. Hugs to you and John