Thursday, December 15, 2005

Grade 4 Glioblastoma

The pathology report was given to my by my sympthetic neurosurgeon as I made final preparations to leave the hospital yesterday. He patted my leg and apologetically lowered the boom: Glioblastoma. Grade 4. Statistical prognosis around 14 months. I am dying of brain cancer. Report in a while for radiation, chemo, and more MRI scans to help prolong the process as much as possible. The brain, which has always been the most fascinating part of the body, is now the one part that threatens my life.

I am still recovering fairly well from surgery, dealing with a lot of head pain, jaw pain, and visual hallucinations. But I've been seizure free as far as I can tell, my hair is combable over the "Frankenstein spot", I remember stuff, and I think I have left most of my personality intact (as in, no - I didn't turn into a b****). I was able to exercise a little with the help of the physical therapist, and it looks like most of my neurological functions are good.

The emotional reaction to this news is very difficult. I am obviously sad and distressed by the news. Family and friends have barraged me with everything from hugs and prayers to angry insistence that I must become one of those who "beats the odds". I hear stories all the time of people who did. I watch my husband bear the weight of this news with his tears and fears. I hold my children and wonder how they will handle this.

Okay, so I believe we all have a date. We all have "our time" - you know, when the big bus of mortality runs you over. None of us is guaranteed to be here in fourteen months, let alone fourteen days. Fourteen months is never long enough. We always want more time. But there is a gift in knowing that the big bus will be coming, so we can be prepared for it. I will make better use of the coming year than I would have if I had just squandered it away and then tragically got caught off guard by the bus.

So the control freak in me is busily occupied with thoughts of things I need to do right now. Things left unfinished in life. Things unwritten. Words unspoken. Plans unmade. I am grateful for this opportunity, although it is distracting and overwhelming to think about. I pray that I will have the physical and mental strength to do these things in between medical interventions.

My other overriding thought is that there is the doctor's time, based on his best estimate (although he did grant me some favorable allowance for my age, tumor location, and the presence of the chemo wafer still in my brain, possibly buying me a small amount of extra time), and then there is God's time. God's will. I pray that it will extend my life long enough to raise my children and do all other things planned for my life. But as in all things, I believe the Lord's will must be done. He will care not only for me in this life and the next, but he will also care for my family. All may still be safely rested in his arms. But for now there is still a time of digesting and grieving some difficult news, and setting our sights on what is left of our future.

24 comments:

Faith said...

Krista, you have been in my thoughts almost incessantly this week. I can only imagine how stunned you all must be by the news. My thoughts keep turning to all the people you have touched with your kind and loving service. I know that you will be blessed tenfold. Know that people all over the world are aware of you and your beautiful family, and are praying for you just as we are here.

Love,
Faith

Rachelle said...

Krista,

My prayers are with you. I have been a part of the 2ofus4now group for a few years, although a quiet member. You have been an example and an inspiration to me. Your group helped me through a most difficult time of my life. I will be praying for the best for you and your little family.

Teri said...

Hi Krista and Jared,

This is Teri from Oregon (originally P.G.). I just now heard about two things...your new daughter and your brain cancer. First of all CONGRATULATIONS on your new daughter! I am so happy for you! Secondly, I must admit that I'm writing this message while tears roll down my face, but I am inspired and in awe of your wonderful attitude and incredible faith! I do medical transcription and I type about people all the time who have survived cancer of many types, and I truly hope and pray that you are one of them! If your attitude and faith have anything to do with your outcome, I'm sure you will live to be a very old woman :o). I love you both!

Teri

Teri said...

P.S.

And of course we will be fasting and praying for you.

Love,
Teri

Anonymous said...

As I read your thoughts here on your blog my heart is saddend to think of the future possibilities, and I'm sure you have been bombarded with everything from cleaning service to 3 cheese lasagna. The one thing I offer to you is something to think about... after reading some of your blog, I see that God has blessed you with a lions share of one of his most precios gifts...humor. Now more than ever is a time to develop that talent and gift. There will be many challenges ahead and the Lord has given you this wonderful gift to help get you through it. Embrace it and he will bless you with some of the most choice times of your life. A day with out a laugh and a smile, just isn't a day worth living.

We are thinking of you and want you to know that knowing you has made our live better. You and your family are so wonderful and sweet. Know that you are in the prayers of hundreds of people who love you, and you can count the two of us as part of those hundreds!

We love you and look forward to seeing you again!

As I am sure you have heard these words so many times before, but...please let us know if we can do anything for you.

Greg and Kristin Richmond

Anonymous said...

bhfgqpuwMy friend has glioblastoma and has been alive 1 months from the first diagnisois. His if trying the Israili scorpian veniom trials to extend his life so he can see his two children as long as possible. His daughter graduated last month so he got to be there for one milestone. He is having partiale face numbness which I think is a bad sign. Just wantd to say he is in my prayers and all who have the same condition.

joeyjeannie said...

sorry to hear about your diagnosis, I found your website while searching info to help understand about my mother who was also diagnosed with this disease. We have found a lot of info, a lot of it to late for my mother but perhaps you may find some useful. My mothers website is here: www.caringbridge.org/visit/paulettecallahan
please dont let this site discourage you, as I said, a lot of info that may have helped came to late. Again I am so sorry about your diagnosis. Joseph Callahan

Anonymous said...

Just read your blog. I stumbled across it while searching for information on Glioblastoma. Our daughter Danni(age 19)was diagnosed in Feb with stage 4. I was pleased to know that you are trusting the Lord through this. His strength and peace is the only way we get through. We are not capable of this on our own strength! We continue to trust Him and realize Danni is in His hands and that's the safest place she can be. Thats true for all of us. We will pray for you and your family. Through this my wife has been inspired to keep a blog for our Danni. She writes some very encouraging thoughts that the Lord has used to encourage us all. Her web address is www.dannifrain.com thought maybe you might find some encouragement there as well. God Be With You. From Indiana.

Terri Gebo said...

Terri from South Burlington, Vermont said:

Krista,

I am so sorry for everything you are going through, everything you said is so true. My father in law, "I have been with my husband for 18 years now", so I consider him my father was just diagnosed with Grade 4 Glioblastoma, there was no real warning signs, they thought he was having a mini stroke because he just buried his brother a week before from a very rare tumor on his kidney. It wasn't a stroke it was the worst news possible Grade 4 Glioblastoma, as I am sure you understand better than anyone. I am so sorry for you and for Henry it's just not fair. How can there be no treatment to cure Grade 4 Glioblastoma with all the medical resources out there. Henry loves his family and life more then anyone I know, as I know you do. I hope we all have the strength and courage that you seem to have to get through this. Henry starts his treatment next week at Boston, MA. We are all so scared and know one knows quite what to do. As with you, he has had so many people tell him they Love him and will pray for him. I know both of you will be blessed tenfold in Heaven. I will pray for you and your family as I pray for Henry and our family ever minute of everyday. I hope the time you both have left will allow you to do the things you said you wanted to do but never got around to doing, because you both thought you had all the time in the world.

All My Love

Terri Gebo
South Burlington, Vermont 05403

Johanna said...

My talented husband of 23 year has been diagnose with GBM grade 4 and like all of us, it came as a shock as he only presented with a head ache. He's 4 months post op from a "complete" surgical by Dr. Friedman at Duke. He has gone through the radiation, chemo and is now participating in the vaccination studies that they have available at Duke should you qualify. He now take 5 days of temador once every month for an undetermined number of months. Fortunately, he had a total resection of two large tumors; one being parietal the other occipital.
The real kicker is that he, after 20 plus years of dedicated work, took his own MRI to the brain lab and mapped out his own treatment plan. My husband is a medical physicist trained at Harvard and has help so many other victims of cancer of every variety.
So when I ask why him, A man of 55 years, a devoted father to 4 children and faithful husband to me, he replies that this is Gods' will. I'm heart broken,scared,saddened and hopeful all at the same time. I think about all the people he has treated and all that will never benefit from his extraordinary talents. It truly make one believe that life's unfair. While he has all of his cognitive abilities still intact and has resumed work, there are some new "little" issues that sneaks up on him. Like for some reason his ADH (anti diuretic hormone) quit working. So he developed "DI". Now one has to wonder if the hypothalamus or the pituitary gland is involved. Is it tumor regrowth or edema? It's always something.
People have reached out to us both in the medical community and within our home town, all wanting to know what they can do......Nothing except pray.My job is to stay strong be positive, support him,and the children. It's a hard job. As the caregiver, I quickly learned that if you do not take care of yourself, you will eventually not be able to care for others. Support your family with sound nutrition, physical activity and offer a spiritual leaning post.Some will find that because of their loved ones affliction, God has abandon them. I thought so myself too.That's okay, because that part of the process.This is going to been one of the hardest roads I've traveled so far and I'm hopeful that between good thought,good karma, lots of prayer and strong advances in medicine. We will all have the opportunity to beat this.
God bless. My thought ,prayers, and hopes are with you all.

Anonymous said...

My prayers goes out to you and your family, My is in the hospital as we speak recovering from Grade 4Glioblastoma surgery. The Doctors did there best, God will do the rest.

God Bless!!

Laurence Taylor

Cherice said...

My sister was just diagnosed today with Grade 4 glioblastoma. She has 4 children, and 1 new grandson born monday. It's been one heck of a ride up until now, and I know the road ahead is going to be tough. I will keep you in my thoughts as well. God bless.

Cherice said...

My sister was diagnosed today with Grade 4 Glioblastoma. Tomorrow we find out about treatment and prognosis. I will keep you in my thoughts as well. God bless.

Daughter said...

My beautiful mom died last month from a gliobalstoma. We had 123 days from time of diagnosis. Her life and my dad's were dedicated to God. My prayers are with each and everyone as you face this giant. Face it with the courage of David and always remember that it is God's battle. Let Him use you and as with us-prayer will be answered daily and all your needs met. Miracles do happen-my mom's came in the resurrection.

Anonymous said...

krista...you are in my prayers...my dad was just diagnosed with 4th stage glioblastoma in july...he had surgery and they removed all of the tumor and he is completing his radiation in 5 days...he is currently on temador for chemo...he is being weined off decadron...the steroid makes him not himself...my heart goes out to you and your family in this most difficult time...we didnt tell my dad his prognosis which is grim...but it is difficult to know for us...i wish you well...sincerely, maria

Anonymous said...

Is Krista still alive?

Krista said...

Still alive and posting!

Anonymous said...

Today's date is April 13, 2011. Is Krista still alive?

Jared said...

Regrettably Krista passed away on December 10th 2010 due to a known side effect of the chemo she was on to treat a metastatic tumor on her spine. We understood the risks involved with the treatment but the potential benefits outweighed the risk. I'll miss her dearly until we're together again.

Anonymous said...

Jared:
Sorry to hear of you loss. Ran across your blog by accident this morning and couldn’t help but think of my similar experiences in the past. I am sure you have been told it gets easier with time, unfortunately that may not be completely accurate. After nearly 18 years I sit here in the wee hours of the morning wondering what it would have been like if all of that hadn’t happened, how the kids would have been different if she had lived to raise them, about all the good times we missed out on, about all the plans she had for her/our lives. I think about what I should have done, and what I could have done better. Life challenges continue to come but for the most part you face them alone. Stay strong in your faith, you will need strength and direction not only now but even more in the decades to come. May God bless you and give you strength and peace.

Anonymous said...

Krista you are an ispiration to many god blessyou. I know how difficult this maybe for you as my brother has got the exact same tumour with not long left to live and he is only 19years old. Ihope you get well soon and survive this awful tumour. My prayers are with you. x

Anonymous said...

Krista you are an ispiration to many god blessyou. I know how difficult this maybe for you as my brother has got the exact same tumour with not long left to live and he is only 19years old. Ihope you get well soon and survive this awful tumour. My prayers are with you. x

Anonymous said...

My uncle has been diagnosed with Grade 4 Glioblastoma a few days ago and the news has completely shattered our close-knit family.We have had our share of losses over the years and this year has been especially testing.We all know what the prognosis is.I came here to say what I refuse to say in real life.I'm not coping.I get up everyday,go to work and pretend that this is not happening.I pretend that if I dont talk about it ,its going to go away.My uncle has worked so hard all his life to build a future for his wife and kids.Only recently his marriage of 30 years all but fell apart.Now another blow.The saddest thing in all this is that in 55 years he never got to rest.Now when it was time for him to do something for himself and slow down,life has betrayed him.I'm here to ask for your prayers.We need a miracle.Please pray for a miracle for my beautiful uncle.

Anonymous said...

I have read all your stories so very touching and sad. My uncle was diagnosed a few days ago with stage four glioblastoma multiforme. Right now I'm in the process of encouraging her to try or to add young living products to his treatment plan. Not sure if its working but I pray she decides to try them. Radiation doesn't really work to rid the cancer itself on a cancer like this. Its aggressive. I'm a young living consumer for many years. These oils and products work. I know from personal experience. My job is to encourage ppl to try homeopathic holistic approach to medicine and for ppl to educate themselves on how to take care of themselves so they can make their own educated choices. If you have more questions or concerns please contact me at pink-1982@live.com I will be more than happy to help you. PS I encourage you to share with your physician your educational choices but to caution you some may not know anything about these products. Until then abundant blessings to all and my prayers be with each of you.