CancerCompass message board discussion started by Mazzo on 4/23/2008 http://www.cancercompass.com/message-board/message/all,23335,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ It could not be painless.Last Thursday, my girl left the house, for the very last time.It was a cloudy and cold afternoon. I remember singing in the back of my head “Mr. Ambulance Driver” from Flaming Lips while we crossed town in the usual heavy traffic at the end of the day. I just asked to keep the sirens off. I finally felt the pain. I had been struggling so hard, so involved in the turmoil of an overflow of information to manage, that I probably purposely left very small room for grief and sorrow. Now it is coming, slowly and steady.I tried to the very end to keep things going in at home. However, her status declined so fast that every day a new measure should be taken to avoid major complications. In a matter of days she became bedridden, lost her ability to chew and one day later to swallow deliberated. I was using a syringe to feed her.Her family was begging me to hospitalize her from the beginning. I refused to consider this option while she was obviously aware of her surroundings, and mainly while we could do every comfort measure equally or better than a medical facility.However I could not ignore that despite being the primary caregiver, I share this task with her mother which is obviously devastated by the process. Things sounded eminent, and I was not naïve to suppose it should end peacefully. Despite this is the thing we would like most, I know it could be way more intense than some people experience. I think I can manage it, but I am certain it would be asking too much for a mother to watch an endless seizure or any other of the possible complications we are exposed at this point.So it is. She checked in at the same hospital we had been ten months ago. You know you are really in trouble when every nurse knows your name and your story.We are taking shifts by her side.She is not very different from what we had being seeing at home. Only news is that ironically Avastin+CPT11 seemed to work at least partially. The tumor is probably smaller or at least stable compared to one month ago when her clinical decline began. We though her screaming and moaning could be a reflex of intense pain caused by intracranial pressure. It does not seem the case now. There is little edema, but her tumor is highly infiltrated at the structures that connect both hemispheres, and it is moving toward the other side. So her symptoms are probably due the healthy tissue destruction promoted by tumor progression.We stopped chemotherapy and slowed down corticoids. Tons of sedatives and pain relief are at least given her a chance to rest. Every moment of awareness is fulfilled with moaning.I feel terrible doing the math based on other experiences and references like brainhospice.com. She presented probably every little symptom of the scale less coma.Two days ago was the last time she opened her eyes and looked at me. She was pretty scared due to a last time small surgery to rescue her port cat – damage by a dumb nurse at her first attempt to use it.She said: “Motherf****s! Motherf****s! I almost died!” – grab my hand and felt asleep for hours. Sorry for the long post – as always – I usually do not vent. But in this new scenario I am gaining too much time to think and feel, something I was getting used to avoid.  Mazzo Wed, 23 Apr 2008 00:00:00 GMT Thank you for the details of your journey.  We are in a place of helplessness, full of shame if we pity ourselves for our pain, for our loss while it is our love ones that are truly suffering, waiting for the ultimate relief.  I believe you are speaking of your wife.  I am sure you love her very dearly.  I would think if waiting for the inevitable it would be natural to want it to come quickly and painlessly.My wife and I are making last vacation plans.  She may be, god willing, months behind you, but not many.  Hers are  different brain tumors but the prognosis is the same:  She was diagnosed 3-07, it's incurable and it is taking her life right in front of our eyes.I am very sorry for the pain you are feeling and hope you are able to say one last goodbye before she passes.  ohimick Wed, 23 Apr 2008 00:00:00 GMT  On 4/23/2008 Mazzo wrote:It could not be painless.Last Thursday, my girl left the house, for the very last time.It was a cloudy and cold afternoon. I remember singing in the back of my head “Mr. Ambulance Driver” from Flaming Lips while we crossed town in the usual heavy traffic at the end of the day. I just asked to keep the sirens off. I finally felt the pain. I had been struggling so hard, so involved in the turmoil of an overflow of information to manage, that I probably purposely left very small room for grief and sorrow. Now it is coming, slowly and steady.I tried to the very end to keep things going in at home. However, her status declined so fast that every day a new measure should be taken to avoid major complications. In a matter of days she became bedridden, lost her ability to chew and one day later to swallow deliberated. I was using a syringe to feed her.Her family was begging me to hospitalize her from the beginning. I refused to consider this option while she was obviously aware of her surroundings, and mainly while we could do every comfort measure equally or better than a medical facility.However I could not ignore that despite being the primary caregiver, I share this task with her mother which is obviously devastated by the process. Things sounded eminent, and I was not naïve to suppose it should end peacefully. Despite this is the thing we would like most, I know it could be way more intense than some people experience. I think I can manage it, but I am certain it would be asking too much for a mother to watch an endless seizure or any other of the possible complications we are exposed at this point.So it is. She checked in at the same hospital we had been ten months ago. You know you are really in trouble when every nurse knows your name and your story.We are taking shifts by her side.She is not very different from what we had being seeing at home. Only news is that ironically Avastin+CPT11 seemed to work at least partially. The tumor is probably smaller or at least stable compared to one month ago when her clinical decline began. We though her screaming and moaning could be a reflex of intense pain caused by intracranial pressure. It does not seem the case now. There is little edema, but her tumor is highly infiltrated at the structures that connect both hemispheres, and it is moving toward the other side. So her symptoms are probably due the healthy tissue destruction promoted by tumor progression.We stopped chemotherapy and slowed down corticoids. Tons of sedatives and pain relief are at least given her a chance to rest. Every moment of awareness is fulfilled with moaning.I feel terrible doing the math based on other experiences and references like brainhospice.com. She presented probably every little symptom of the scale less coma.Two days ago was the last time she opened her eyes and looked at me. She was pretty scared due to a last time small surgery to rescue her port cat – damage by a dumb nurse at her first attempt to use it.She said: “Motherf****s! Motherf****s! I almost died!” – grab my hand and felt asleep for hours. Sorry for the long post – as always – I usually do not vent. But in this new scenario I am gaining too much time to think and feel, something I was getting used to avoid.  Mazzo, I'm so sorry to hear of her quick decline. Know that many here are praying for her peacful and painless passing . You and your family are in my prayers as you go through this time of uncertainty and grief. Laura Laura412 Wed, 23 Apr 2008 00:00:00 GMT Mazzo:I've been a caregiver for almost three years.  You're post made me very sad, but I think that you are doing the best that can be done.  I hope that your wife finds peace from her discomfort and that you find the strength you need.  Thank you for sharing your experiences. Ken s Wed, 23 Apr 2008 00:00:00 GMT Mazzo, I'm been keeping track of you and your wifes journey with this horrible disease and I have to say how deeply sorry I am that it is reaching its end. You have had her 5 years that originally you probably didn't think you would. Remember that God gave you a big piece of her here with you on earth. Cherish that little girl and always let her know what a warrior her mother was. I pray that you and your family have strength to get through this and that she has the peace she and you so desperately have wanted for her. May God be with you and help you in your time of need. God bless~ gr8ful4itall Wed, 23 Apr 2008 00:00:00 GMT Oh Mazzo, I am so very sorry for you and your dear wife.  I am sorry that your baby girl is going to soon lose her mother.   I wish for a peaceful ending to the suffering.  Take comfort in the fact that you provided your wife with the very best care you could.Please let us know.  Peace and strength to you and your whole family.Barb bpanc Wed, 23 Apr 2008 00:00:00 GMT I deeply thank all of you.I just checked with my mother-in-law how she is doing this afternoon, and heard that she continue to sleep after I left this morning. It is the first time she slept more than twenty hours in a row. She slept so profoundly during this night that does not complain even when nurses came by to empty her bladder. I called the neurologist who checked her while I was out, and he pointed two predictable ways: progression to coma or sleep induced by medication. Once she is taking the same amount of drugs for quite a while I know what he means.We had a full life. This stage is just a fraction of a marvelous story.I really do not intend to discourage those who are fighting hard right now. Even when I came by to vent here, telling our victories and losses, I always keep in mind that all those days were conquered, lived completely. And that is my message to everyone.We lived with grace and right now it makes all the difference for me. I already miss her immensely, and this will probably get worst. If anything could ease my sadness it is the certainty of how we live up to this point.It may sound foolish and even detached from reality, but during all our life GBM and his life threatening consequences was one of the issues that we had to deal. But it had never been the sole reason to wake up every day. We coped with this, and carry on investing the bold part of our energy and time on living. We crossed the Mojave Desert with music blasting our ears.We climbed the Sentinel Dome, and napped by the Jeffrey Pine.We had an apartment in Barcelona for a week.We saw snow in Venice.We danced. Everywhere.We performed our version of “Candy” drunk in every wedding party. (She did a hell of Kate Pierson)We ran away on Friday afternoons more than one time without knowing to where we were heading.We had the most beautiful daughter ever.We spent a New Year’s Eve at the Orlando Airport Parking Lot.We freeze in Disneyworld during the coldest days of Florida winter since 1979. All this, and so much more, happened after surgeries, chemo, MRIs.I had a passionate relationship with music, and one lyricist in particular caught my attention with these lines that I took as a personal mantra years ago. I know it is someone else quote but it fits perfectly:"From the point of ignition,to the final drive.The point of the journey is not to arrive." Mazzo Thu, 24 Apr 2008 00:00:00 GMT I am very sad to hear of what is happening.My thoughts are prayes are with you and your family.May God grant you peace.Jockey Jockey Thu, 24 Apr 2008 00:00:00 GMT God Bless You!  I have been told by friends that my husband and I are a "love story" because of everything that we are going through.  You have cared for your wife with so much love.  If she understood what you have done for her, she wouldn't know how to even begin to thank you.  How difficult it is to care for our loved one towards the end.  They are not the same people we have always known.  GBM makes them so different or may I should say special.  My husband has shown a great deal of anger in the past, but it had gotten better.  Recently it has become much worse and I have told my children that I will care for him at home as long as I am able to mentally and physically.  At one point during this journey I was so scared to be in the same room as he was in because he didn't know where he was at or who I was.  How frightening it was for him.  He is close to that point again.  The last thing I want is for him to be in a nursing home.  I am keeping you and your wife in my prayers.  One thing I have not been able to do is have time to "think" about what really is going on because of the constant caring.  As you know, I would do it again for my spouse.  One day, I like you, will have time to sit and think about what my family have endured.  As of now, we live for the present.  You are a wonderful person to have cared for your wife. Aacddd3 Sun, 27 Apr 2008 00:00:00 GMT