Sorry I haven't done a proper entry since John and I came back from Hershey Medical Center Cancer Clinic. I wanted to give you the latest news we learned in Hershey about John. But as you know, my husband also has a journal, and I wanted to let him go first with the news, as it is his story to tell. But now that John has done an entry in his journal, I'll come out with the news.
John doesn't have kidney cancer.
Dr. Claxton is sure. John has had several tests, and it's conclusive that John does NOT have kidney cancer. I told Dr. Claxton that I was perplexed, and wondered why the local doctor would imply that John could have it. He said he didn't know why his local doctor made such a wrong diagnosis. He also said that we should stop being concerned about it, and told John to "go home and enjoy life".
He also told John he could join the gym with me. That should really be fun.
This really surprised me because John once again, as of late, has almost no immune system. He is getting so much better in so many ways, but for some reason, his neutrophil count is not improving. He has to be careful in so many ways.
He can't eat fresh fruits and vegetables. Nor can he eat at buffets. He can't touch dirt. Technically, he is not supposed to go to the gym either, but I guess it is okay if he wears his mask, and washes his hands afterwards. When he is neutropenic (when his immune system is severely low) he has to wear his mask outside all the time.
Strangely enough, he almost never has caught anything while his immune system is compromised. His oncologist has no explanation for this.
So how am I feeling? Extremely relieved John doesn't have another cancer. And relieved that he doesn't easily catch things even though his immune system is compromised. How else am I feeling? I am still struggling with just "going home and enjoying life". It's hard. Especially after you have gone through a lot. Many don't understand this. It is not so easy to just switch gears. I know it will get easier with time. However, once you have gone through what John and I have gone through, you are never the same. You have to come to terms with what happened, what you saw, what you experienced. Nothing is ever the same again. You have to begin, what post bone marrow transplant survivors call, a "new normal".
You have to start all over again. You have new beliefs. You deal with your mortality and that of others. You think about those who have passed. You mourn for them. You wonder why you or your loved one made it and somebody else didn't.
You are tired enough to sleep for 50 years. You have so much in your mind to debrief from that you could talk for 50 years. You try to decide between sleeping and talking. If you had time you would choose sleeping, but constant doctor's appointments win out.
Fear of coming out of remission is constant.
You wonder who your real friends are. Many just want something from you. Many old friends are gone. Sometimes family is often not heard from again. On the other hand, new loyal friends suddenly come into your life.
Your life is an emotional roller coaster.
You wonder when you can hear the word Cancer again without crying.
You worry about the effects of chemo brain on you or your loved one.
You wish there was someone who was open enough to share with you, who has gone through what you have, if only to debrief to.
You wish you weren't so anxious and hyper vigilant.
Your relationship with God changes. Hopefully for the better. In my case for the better. I really do trust Him more.
Okay, I just took a break, and considered erasing this whole entry, except for a blurb that would read "John doesn't have kidney cancer, praise God!". And that's true, he doesn't. And I guess I should be grateful and that is it. But I still do have these things I am dealing with. Maybe I will be able to handle them better soon, as soon as I deal with them head on. I am tempted to delete this entry but I guess I will leave it in.
I just wanted to get some of this off of my chest, let you know how I am doing.
I truly AM thankful John's kidney cancer is gone. Praise God for that!
I'm so glad you left this entry as it is. Don't feel that you need to apologize at all for what you said. Life will never be the same again for either of you . So many ups and downs are like a roller coaster that never seems to stop. Now you are on the high, tomorrow you may be on a low. Just enjoy the ride ! Each day is a gift as you are well aware ! Make the most of it and thank the good Lord for it.
ReplyDelete'On Ya' - ma
Yes, I read that in John's journal. Was such wonderful news! PTL!
ReplyDeleteHave a blessed wkend & a lovely week ahead.
Hugs,
Sugar
(((((((((((((((KRISSY))))))))))))))))))))))))I dont have a link to Johns Journal.I am so glad he doesnt have it.Have a nice night.
ReplyDeleteWell then some prayers have been answered cause I know there were alot going up! Congrats Krissy and JOHN! Shelly
ReplyDeleteNo need to delete your thoughts, they are important to us too... we have all been through so much with you and John and want to rejoice in the wonderful and the every day....
ReplyDeleteHave a wonderfully Blessed Sunday with your husband!!
Linda :)
ReplyDeleteMy dear Krissy, The smile came on my face and the tears to my eyes as I read about John not having kidney cancer. I can only imagine how it must be for you to try to get back to normal. Like you said, "You have to start over". When I think of all you have been through it overwhelms me. But you made it just like you will make your new life. One day at time. If in any way I can help you
let me know. I can't believe John's tough immune system. Hopefully it will stay that way. And yes " Praise God" and I always keep you in my prayers.
Love Myke
I am so glad that John doesn't have kidney cancer. Maybe your local Dr did see something and maybe a lot of prayers went up for him and he was healed. I can understand how hard it is to switch gears from the way you have had to live. Thank God that you wil be able to live life differently. Helen
ReplyDeleteWe are too Krissy....so glad and praising God for what He's done in you & John's lives. You have both remained faithful and dedicated throughout this ordeal. You have both been a wonderful witness to the rest of us as you trusted God to direct the doctors and nurses in the journey who've taken. May God continue to bless you both...Linda in Washington state
ReplyDeleteAmen!
ReplyDeleteKrissy, I kind of have to ask, why would you consider deleting the entry? Your friends (and lurkers) have been here all this time and I'm pretty sure they plan on staying for the good stuff too ... even while you work through the bad.
Continued prayers for you and John as you try to figure out just what your 'new normal' is. :)
I can relate to all this and so can my husband. Having cancer myself and always afraid I will come out of remission, and my husband took over the housework, cooking, laundry, caring for rebecca and myself plus working a fulltime job, he was worn out. me i went back and forth to 9 different doctor's, tests and more tests, chemo, radiation, it drained me completely. Anyways I am very happy John is well, and I hope his immune system gets strong again. ((((((hugs))))))
ReplyDeleteLove,
Cindy
I'm glad you didn't delete it. It's honest and real. It shows that even with faith and trust, even with good news and praise reports the journey can be exhausting, the changes hard to adjust to. God won't leave you alone in the middle of the journey. Hang on. Rest. Regroup. - Barbara
ReplyDeleteI'm glad that you didn't delete the entry, writing is such a great stress reliever and good therapy!! And besides, this is why we're a community, we all care!!! I'm so glad that John is doing well. In time, you'll take that in and be able to relax some!!
ReplyDeleteTake Care,
Joann
Praise God for that ! I can't imagine all the other feelings and emotions you both must go through aall the time- you laid everything out pretty well for us here Krissy, but It's still nothing compared to actually going through it all. I do pray though that God will give you both peace and rest, and I hope that those around you will help you as you go through each thought as it comes. God Bless you both and I am glad for John being OK. Thanks for letting us know. Love Carolyn :)
ReplyDeleteWhat a load off your shoulders! You must feel relieved. It is always good to hear good news. Thank you for thinking. Hugs, Win =.)
ReplyDeleteThat sounds like the greatest news ever! Enjoy the rest of your weekend.
ReplyDeletePhil
I am so glad John doesn't have another cancer. Have him wear gloves at the gym and wipe the equipment before and after.
ReplyDeleteJulie
Thank God John doesn't have kidney cancer. We that we haven't been down your road can't really understand what the 2 of you have been through. Go on and vent. Let it out. It's your journal and it will help you get to your "new normal" sooner. We're here for you and are thankful John doesn't get sick often. That you are home together living your lives.
ReplyDeleteHave a good weekend.
Luv ya, Barb
that is good news...
ReplyDeleteGem :-)
Thats fantastic news Krissy.Prayers continuing you both enjoy yout time together now in your new home.God Is Good.Have a lovely Sunday.Take Care God Bless Kath
ReplyDeleteastoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES
That's very good news Krissy, but I do realise what a roller coaster your life has turned into. And you're right, major traumas in a persons life cannot just be erased. Time is the best healer and the friends and family who've stuck by you through thick and thin. Hope you count me as one of those friends - am always here if you need a shoulder. Love & hugs.
ReplyDeleteSylvia xx
That's really good news for the both of you, Krissy!
ReplyDeleteI think we should all celebrate Thanksgiving early this year! Tammy
ReplyDeletethank God!!!
ReplyDeleteNow Krissy, I am so glad you didn't erase this entry. It is raw and real and people need to know how your life has been, how you feel, what you are dealing with. It is fair for YOU. I am glad you wrote this. I needed it. I love you sooo much, my sweets. Thanks for being so open. It must have been hard. Praise God John is well!!! Love, Val xox
ReplyDeletehttp://journals.aol.com/valphish/ThereisaSeason
Your worries are very understandable hon....you've both been through so much. Heck I worry constantly about things that don't even come close to your worries. So give yourself a break....your allowed to worry. Just don't let it take over your everyday life. Take time to enjoy the blessings that you have been given. And never think you should delete your entry....it's your journal and your feelings...and more people can relate to it then you know....big huggs....June:)
ReplyDeleteGood news. But yes. There is a double edged sword. My neighbor's child battled neuroblastoma and is cancer free almost two years now. It is a waiting game for them though. Will it come back? God is the only one who knows. I'm so sorry your family has to go through this.
ReplyDeleteTraci
That is good news that John doesn't have kidney cancer.
ReplyDeleteI can understand some of what you are feeling. You can't go through what you have and not be changed. I am glad that you are able to trust God more.
Barbara
Dear Friend, I know exactly where you are at. Thank God John is better. Thank God he hasn't picked anything up. And, no, you can't sleep as much as you think you need. I would have really loved to try. You will never go through life again being un-viglient (sp? is that a word?). I can't look at my husband's feet where I'm not checking for diabetic ulcers, and I can't stop wondering about the next hospitalization. It's been quite a while since the last, but I know it's coming again. Still, you'll get some normalcy back and some really positive time with him. Take care of yourself, too, though. Hate like heck to get him back on his feet only to find out that you're sick.
ReplyDeleteYou guys are always in my prayers.
Jude
http://journals.aol.com/jmorancoyle/MyWay
Krissy,
ReplyDeleteSo glad you've decided not to delete this entry. Your very poignant description of your feelings provides a rare opportunity for those of us who have never had this experience to better understand what both the person facing cancer and his or her family members go through.
We'll never know how many other cancer patients and family members you may have helped by educating your readers about this subject. We truly appreciate your openness, honesty, and willingness to share this part of your heart and life with us.
Is there a cancer support group near you where you and your husband might be able to find a sympathetic ear, as well as some much-needed support from others who have faced and dealt with the same issues you're currently facing? That could prove such a help.
May the Lord bless and keep you both!
Jeanne Dininni