Wednesday, November 17, 2010
You Win Some, You Lose Some...More Like You Lose Some and Then You Lose Some More!
Today marks 4 weeks and 1 day that B has been in the hospital, but who's counting right? At this point I don't really know what to say. B's condition is much the same. Unfortuantley the Dr.'s have yet to hit the sweet spot with B's pain meds. It was early Monday morning when Dr. # 4 came into B's room and was very disturbed. B's pain was so bad that he was yelping like a wounded seal. His face was so twisted, and I think he said the "F" word over 30 times. Dr. # 4 said that he was going to consult with Dr. # 12 about a new course of treatment.
Dr. # 4 felt it might be time to try samarium. This drug is actually a radioactive isotope. It is given as an infusion and is used to treat bone pain in patients with serious metastatic bone involvement. It has proven to be very effective and very fast acting in treating bone pain. It is usually used to treat patients with prostate cancer, however at this point, Dr. # 4 thought that it would be valuable to give it a whirl. The only problem with samarium is that is can really lower the blood counts, and could effect B's chemotherapy treatments. But at this point getting the pain in check is everyone's primary goal.
Dr. # 4 consulted with Dr. # 12 and they both decided it was a go. So yesterday B had to have a bone scan and actually had to be moved to a lead insulated room. This is standard hospital protocol for someone who is receiving radiation treatment, and who effectively glows in the dark. I often times flashed to the opening scenes of the Simpson's where Homer is holding radioactive bar just before if flies into his protective suit....you all know what I'm talking about. Last night around 6, B was taken to the basement and the bone scan was set in motion. It was absolutely the most horrify experience both D Bone and I have had to date. B was screaming so loud that my heart was racing, and I actually had to tell myself to calm down. He was crying for them to stop to the test, and he invented new swear words. He was blending shit and damn and it came out shadamn. I all but wanted to cry....all I can say is disturbing.
So now it is 7 or so and we are back in his new room, trying to calm him down. Finally after a few hours he was back to resting comfortably....phew. By this time Dr. # 12 stopped in to see how things were going. We spent some time together and I had a few questions including the purpose of the bone scan. He said that he needed the bone scan as a baseline to chart any progress and that we were definitely a go for tomorrow with the samarium. B, D Bone, Auntie R, and I were all looking forward to the shot and to the possible benefit it could provide.
I had visions of B feeling better and being able to enjoy Thanksgiving with his loving family. I dreamed of us walking together on the beach, holding hands, watching Bear splash around in the water. All I want is for B and I getting some normalcy back. It pains me to go home and see pictures from our wedding. I want to throw them out the window. I still can't believe this is happening to B. But as I said I had hopes that God would come to the rescue with this shot. I knew it was going to be the answer we had been waiting for.
Now it is Wednesday, and I have come over to the hosptial on my lunch to spend time with B and check in. Coincidentally Dr. # 12 showed up and informed us that B didn't qualify for the shot. It just figures. He said that he didn't know there was a prerequisite to getting the injection and only after reviewing the scan and talking to the radiologists did he learn that B couldn't get the shot. I about died. D Bone had tears in her eyes. I was able to hold it together to get the information from Dr. # 12, but burst into tears the minute I got back to work. You just can't image our disappointment. I guess there two types of metastatic bone cancers, and B has osteolytic bone disease, eliminating him from this treatment. Dr. # 12 explained that B's bone disease is an erosive bone disease and the shot would be useless for treating pain. Again, I still can't believe it, and I'm crying now as i relive this experience again through the blog. This picture says it all!
So what does this mean for B? Not sure. Not sure how they next plan to treat the pain. And just imagine how hard it was to tell B. He almost cried too. Everyone keeps saying we are going to catch a break, but when? When is this break coming? I'd sure like to know!
There also has been talks of inducing B into a coma for 72 hours, but this would be a last resort. Dr. # 12 said that it might help to reset B's pain receptors, but B would have to go on a feeding tube, and most likely a ventilator with the possibility of intubation. I don't know about you all, but that sounds like a load of shit to me. Again the Dr.'s plan to adjust the meds and to try new things so we have hope that something will work. I am a small person, with a small heart, and it has been broken time and time again. I am not giving up hope and I am not quitting the fight, nor is D Bone or B, but this fight is kicking our butts. I will never quit fighting for B, I love him with my small heart. It would be a gross understatement to say that we're tired, we are beyond tired.
We hope for better days ahead, for B's pain to go away, and for a cure for his disease. Thanks again for the prayers, support, and gifts.
Love always,
L
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I love both of you so much. Please keep fighting. I know you both are exhausted and at a loss for why this has happened, but you must keep going. We'll pull together so you two can find the strength to keep going. I hate reading about the pain you both are suffering, but eventually something good will happen. I won't stop saying it because I believe. We'll keep praying for both of you.
ReplyDeleteWe. Got. This.
L, you might be small in stature but your love for B and strength through these ordeals, which no one reading this blog could imagine is larger then words could ever convey. Hang in there everyone is pulling for you guys.
ReplyDelete-Dave
L, your heart is anything but little. It's so big we can hear it over here in Vegas, loud and clear.
ReplyDeleteI can't believe they screwed up on that test. How could they not make sure of these things before going forward with a test they know causes so much pain?!
I'm so sorry B, you and D Bone are going through this BS. Our hearts are breaking, too.
Like you said, no one's giving up the fight. Thanksgiving can still happen. Try and keep your head up, L. We're praying every chance we get.
Your heart, my dear friend, is anything but small. Love you both so much.
ReplyDeleteI'm sorry to hear that Ben doesn't qualify for the shot. That is tough to swallow, but we're gonna get through this! I agree we need a victory in this battle and we will get one. I don't know when either, but we're gonna pray for a victory every day. There is not a moment that goes by where you both are not in our thoughts.
ReplyDeleteLindz,
You are a strong person. You are a rock. Stay strong and we'll all get through this! You're not alone in this battle. You and Ben have our full support in this fight.
Pat and Mel
L...,
ReplyDeleteI am speechless, and feel at a loss for appropriate words. And that's because there AREN'T any!!! The horror of this is beyond comprehension. And, um... not only do you NOT have a "small heart", but you have the biggest heart known to humankind! And you deserve a Purple Heart for bravery and whatever else they give them to heroes for!!! D-Bone too. God Bless both of you (and help B!!!).. that's all I can say.
Ok, I get the prize in advance for the dumbest question of the month: What about giving B that 'Michael Jackson' sleep medication? Would that knock him out enough to put him out of pain but not enough to be in an intubation-requiring coma? What is the name of it? oh yeah, Propofol. ok.. looked it up. Here is what Wiki says re: using it for pain control... "Propofol is not considered an analgesic, so opioids such as fentanyl may be combined with propofol to alleviate pain." ... Is this something that has been considered, or might be at all appropriate??? Obviously I am clueless, but B's pain level is inconceivably high, and it just shocks me that it cannot be controlled in ANY manner.
I am thinking of all of you constantly, never losing faith.. and thanking God that B has the wife, mother, friends, and family he has. At this stage in everything, it is the only relief he has. Bless you all.
~ Kristin in Chicago
No one can possibly know what we have all gone through these past 10 months(!!) especially Ben. What would he do without Lindsay who has the biggest heart in the whole entire world! She is Ben's strength and lifeline for sure. We will never ever give up and I know all of you out there say your prayers for Ben every night and day.
ReplyDeleteOne interesting comment from Dr Lineberger (Ben's 40th or 50th Doctor who is one of his anestheologists) who said that a good friend of his was recently diagnosed with metastatic lung cancer who never smoked. He told me that he hasn't given up on his friend and that are thousands of people everyday that defy the odds. Everyone that knows Ben hopes with all of our hearts and souls that Ben will be one of these people.
God bless Ben, Lindsay and all of us. WE GOT THIS!!!!!!
B,L&D,
ReplyDeleteI have seen B& D tested before, and you have always coped with whatever came your way. I don't know you personally Lindsay but, from what I have observed you not only have the largest heart, but it is filled with so much love. Ben's extremely lucky to have you. Please except my heartfelt prayers for Ben, and the rest your special families. Cousin Anita
All I can say is what luck that it is you all going through this because I can't imagine anyone else having the love, fight and perseverance that you have.
ReplyDeleteI wish I could say that I know you personally because crying for people you have never met sounds ridiculous.
I can say that I am standing here with you for as long as you need. If there were a way for me or any of your family or friends to make this better, I am sure that we would.
Love and strength to you both. There is a break and it is right around the corner. Hang on!
L-Bomb,
ReplyDeleteYour heart is bigger than there are words to express. Hang in there, and continue to be the love and support that Benny needs. I'm with you two from afar. Keep up the good fight!
Much love,
slammer
L-
ReplyDeleteCharles Spurgeon once said, " Faith looks back upon the past and remember that God has never once failed any of His children. It recollects times of great peril when deliverance came, hours of awful need when strength was received, and cries, 'Always before, the Lord has helped me, and He will help me now."
Lindsay your heart, your drive, your strength, your faith, and dedication have been in abundance all year. Its been seen and felt by your friends, family, and co-workers. What a blessing you have been for Ben and also what an inspiration you have been for all of us.
I can not imagine what you both are going through and want you to know that we are all here to surround you with the love and support that you both need.
You CAN beat this!
MDale
Tomorrow is D-Bones birthday, what a wonderful present it would be for the relief that you all need. I feel that I have lived this with you all on every level, and NEVER HAVE I WITNESSED SUCH LOVE AND ENDURANCE IN MY LIFETIME...I love you all with tears running down my face I wish for all of you Peace and Comfort. I know all your family and friends back you 100% so that I hope is some comfort in this mamoth Fight. Stand up to this and all will prevail. Love you with every fiber of my being. Love Jan
ReplyDeleteDear Ben and Lindsay,
ReplyDeleteWe can hardly believe all that you have had to endure without any relief.
What lies behind us, and what lies before us are tiny matters compared to what lies within us.
~ by Ralph Waldo Emerson ~
What lies within you, is immeasurable. We love you both, Uncle Steve and Aunt Julie
Dear Ben and Lindsay,
ReplyDeleteWe think about you guys every day. We are hoping and praying for you always..Love Uncle Paul, Robin, Brett, Daniel and Zach.
You don't know me, but I am a friend of the family. I have followed your blog since the beginning. I can't imagine how hard this must be for you. I am so sorry to hear that you're going through this. I want you to know I care about you and think of you every day. I hope there is some way to decrease the pain for Ben and the pain for Lindsay and Ben's mom and family.
ReplyDelete