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Fighting the battle for 7 years
My husband, John was diagnosed with high grade invasive Urothelial cell carcinoma of the bladder on April 8, 2008. He was 45 years old. I’ll never forget that day. Our world changed forever.
We have been through the physical and psychological fire of the decade. My husband went from stage 1 to stage 3 to stage 4 by 2011. He had a Neo-bladder made from his small intestine. It works beautifully by the grace of God and his wonderful surgeon at UAB Hospital.
Scans were clear for 3 full years and we were just starting to relax again. Then in May 2014, the nasty little demon poked her head out again, showing up in distant lymph nodes.
My husband and I have learned a lot in 8 years. We’ve learned how to love each other, care more for others, appreciate things others take for granted, live for Christ more than ever. We’ve also learned to fight for Mike to be cured and never give up. We are fighters, Warriors against cancer. We don’t just go along with what the doctors say. We go beyond that. I am my husband’s case manager. I take responsibility for his care, his treatment, his survival. I leave that to no one else. It is mine.
Mike now is N.E.D. That is a medical term that means No Evidence of Disease. It does not mean he is cured. It means after 6 rounds of chemo that ended in January, we live to fight another day. And when I say “we” anyone who is in a similar situation knows that it is WE, not just “he”. So we are very proactive to take measures to prevent a recurrence. We are all into natural methods to increase the immune system and give his body as much ammunition as we can practically manage to fight off the disease. We see two oncologists, a naturopath, and an Osteopathic Doctor. I keep a notebook with me at every appointment and never hesitate to ask tons of questions. I inform each doctor of what the others say and do, so that our team of doctors are kept up to speed. I do not fool with doctors who don’t have time to listen. They are useless.
I am hoping to find a place to share and learn and comfort others in this forum. I desperately want my husband to live but I am also learning that I cannot control everything.
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9 Replies
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Stephanie
I have just stepped into the same nightmare.
We have an appointment at Vanderbilt 8/2. My husband and I are into naturopaths and boosting the immune system naturally. I would love to know what supplements your husband is taking.
I’m still trying to wrap my head around all of this.
Any advice is greatly appreciated.
I’m so glad I found this group. -
Stephanie,
Loved your message, fellow care giver! I’ve got my notebook going too…since 2001.
Anita
Anita
Forum Moderator
Caregiver
Thank you Stephanie for your post. I haven’t checked in for awhile and, TADA, your beautiful post was there for me to read. What a spirit lifter.
George thanks for the turtle and squirrel analogy – that really puts things in perspective.
I really love this forum. It’s the best.
Back to the chemo cave!
Oh, I can assure you that my wife and I share EVERYTHING about this cancer. We never would have gotten this far if we kept anything from the other.
I was just referring to the patients fear of the cancer’s return. Each day I think about it a little. People on this site are very familiar with another Mike who was cancer free for five years, and then it was found suddenly to have metasticized in other places. He was my inspiration to be here. And every day, I think about him a little. But, if I awoke each day and said “Good Morning honey, I’m worried about this cancer thing today,” She would think I was nuts! Or she should.I am not looking back or being pessimistic …… I’m just being realistic. My Dr said there are two types of cancer… The turtle and the squirrel. Those of us with bc have the squirrel. It moves fast when it moves and it seems a constant threat.
But I really am planning on living a long, loooooonng time. So all of you will just have to put up with me.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]
George- thank you so much for your kind words and honesty. My husband, Mike would certainly understand your fear. He is very open with me about his fears and they are enormous. Mine are too. Mike has told me many times, especially when I’m trying to comfort him and fell him “everything will be okay” that I have no idea what it is like to be in his shoes. He only relates to the words spoken by other people battling cancer. I know you are trying to protect your wife but she may prefer to share your burden rather than have you suffer without her.
Thank you, Sara Anne. I appreciate your warm welcome. I am glad to find some people to talk to who have been in the fire with bladder cancer.
Stephanie,
Thanks for sharing! I find it encouraging and reminds us all of what is important!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Stephanie
WOW!!!
Your post was such a “Throwback” to 2008. That was my cancer year. Our cancer year.
My wife and I are, and were THE A TEAM of cancer fighting.
I have a neo and have now been almost 7 years c free. Audrey and I are in inseparable team, and this cancer thing has forged a lasting bond between us.But your husbands reappearance of cancer has always been my hidden fear that I never expressed to my wife. In fact, It was my very first question I asked on this site!
Over the past few years, most people look at me as CURED! I am always careful to see my Dr regularly and I go through all the tests and checkups.
But…. This is my fear and I don’t even express it to my wife. She does not need to know that I still have this fear. For all my family knows…. I am cured.Thank you for finding this site and welcome. We are glad to hear stories of courage and teamwork. You as a caregiver are as much a victim of this disease as the patient. I never, ever, ever forget that my wife suffered through this disease as much, or even more, than I did.
All of us here are glad to read your story and we are happy to hear of your success! Keep those cards and letters coming!
And, as for our being here for you, Well….. “We will be in the Copa room all week, for your dining and dancing pleasure” Just a bit of humor hereGeorge
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Welcome to our group, Stephanie. You and Mike are true fighters! And I was so pleased to read that you are fighting this TOGETHER. That makes your fight doubly effective. It is always so sad when someone says that their partner won’t share. Sharing does lighten the load.
Your story will help others on the same path.
We will be fighting with you!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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