Friday, March 30, 2012
A normal lunch
Mike went out to lunch with his roadwife, Jon. ; ) The first normal feeling day we've had in a month. I am so very grateful, thank you Jon Alden you're the BEST! Mike and I are both so blessed to have you in our lives.
What is
When Mike first started having pain and before we knew what the cause was, I comforted myself by constantly repeating "focus on what is, not what if's". What is...he's here, he's okay, he's still smiling and still laughing, he's just uncomfortable but he's okay. Then as we received information the "what is" changed but I still managed to keep the "what if's' at bay. Now I don't want to face the "what is"...I want to turn back the clock to a time when Mike had his health and I'll say "why don't you get a scan" and he will, because that's him. He has always been the most health conscious person I've ever met. So he will have the scan and they will see a seed of cancer and they'll remove it and it will never get the chance to spread or to grow into a tree.
This is a first for us, a reality we can't comprehend. It feels as if we've been scripted for someone else's roles in a movie we don't want to be in. I remember when Mike's dad, Paul past away last year we talked about how you think you have empathy for others and realize you never understood at all until you live through it. It's impossible to grasp the depth of despair I feel at the news of my Mitt's cancer unless you've lived through it. I hope this makes you all love and appreciate each other more. I hope you take care of your health and realize that taking the very best care of you is the best gift to give those who love you. That's one of the many reasons this is so hard for me to accept; Mike did everything in his power to ensure his health. I pray that his efforts and all his work towards his health will somehow benefit him now.
He slept well last night, he still had the effects of the anesthesia so he didn't even need a morphine. He continues to make me laugh and smile and he holds me when I cry. I'm so very grateful to be his wife.
Thank you all for your love and encouragement.
This is a first for us, a reality we can't comprehend. It feels as if we've been scripted for someone else's roles in a movie we don't want to be in. I remember when Mike's dad, Paul past away last year we talked about how you think you have empathy for others and realize you never understood at all until you live through it. It's impossible to grasp the depth of despair I feel at the news of my Mitt's cancer unless you've lived through it. I hope this makes you all love and appreciate each other more. I hope you take care of your health and realize that taking the very best care of you is the best gift to give those who love you. That's one of the many reasons this is so hard for me to accept; Mike did everything in his power to ensure his health. I pray that his efforts and all his work towards his health will somehow benefit him now.
He slept well last night, he still had the effects of the anesthesia so he didn't even need a morphine. He continues to make me laugh and smile and he holds me when I cry. I'm so very grateful to be his wife.
Thank you all for your love and encouragement.
Thursday, March 29, 2012
Why?
Today was the hardest day of our lives. It went from bad to worse at Mike's scope appt. They had me come in to try to wake him and just seeing him unconscious was too much for me and I broke down. They called a counselor up to comfort me. I cried uncontrollably the entire time he was asleep. All the RN's were compassionate and I will forever be grateful for the care they showed me. I somehow knew they had very bad news for us; and I couldn't do anything but cry. There were three nurses who went on about what a great guy Mike was and how he had them all laughing before he went in and they all helped me cry.
When Mike woke up the doctor came in to show us pictures; they found a very large mass growing from his stomach all the way up into his esophagus. The doctor called it a tree, in the photos it looked like a head of cauliflower it was white and at the base of the mass it's ulcerated meaning it's bleeding. The doctor said he was surprised Mike could swallow and eat. It's inoperable.
They called oncology and moved his next appt. from the 9th to April 2nd. At that appt. they will most likely tell us it's stomach/esophageal cancer metastasis to the liver. They basically told us that at this scope appt. but said officially the oncologist will tell us.They said eventually he may have to have a feeding tube in his stomach. The doctor told him due to the large tumors on his liver he's likely to die of liver failure. My heart is sick with grief and the small hope I had is gone. My biggest fear became real and I am so very afraid I am losing my best friend, my Mitt. Why, my Mitt, why?
When Mike woke up the doctor came in to show us pictures; they found a very large mass growing from his stomach all the way up into his esophagus. The doctor called it a tree, in the photos it looked like a head of cauliflower it was white and at the base of the mass it's ulcerated meaning it's bleeding. The doctor said he was surprised Mike could swallow and eat. It's inoperable.
They called oncology and moved his next appt. from the 9th to April 2nd. At that appt. they will most likely tell us it's stomach/esophageal cancer metastasis to the liver. They basically told us that at this scope appt. but said officially the oncologist will tell us.They said eventually he may have to have a feeding tube in his stomach. The doctor told him due to the large tumors on his liver he's likely to die of liver failure. My heart is sick with grief and the small hope I had is gone. My biggest fear became real and I am so very afraid I am losing my best friend, my Mitt. Why, my Mitt, why?
No Coincidence
So many of you are contacting us and asking what you can do, I ask that you please pray for Mike. I know the helpless feeling first hand and I've developed several ways of coping and one made me smile last night so I would like to share it with you.
Before Mike was put on morphine he had rough nights where he would quietly moan in his sleep and his breathing would sound irratic. I got in to the habit of laying very still beside him and imagining that tubes were connected from his liver to mine and I could help his liver filter all the excess it could not and send back through the tubes the needed fresh supply of the "good stuff".
Friends, I am very detailed in this process because as soon as I read the first scan from LA, I educated myself. The liver has over 300 functions and we need it to live, that's why it's called the "liver". Every night I visualize hooking our livers up and I go through my mental check list; help him process any food, help with his bile production, help him control acids, glucose and fats, help him fight infection, help clean his blood, help make enzymes and proteins needed. I lay still next to him and visualize this process. This became my middle of the night ritual. Last night in the middle of the night as I did this I got a muscle spasm on my right side, right where my liver is (you know the kind you get in your eyelid, arm or leg; the kind that has it's own rhythmic beat) and in my state of sleep deprivation I actually thought the vibration I was feeling was from my imaginary tubes. I continued to feel like I was in the middle of our liver transfusion all the while holding very still. This made me smile and I like to think that's it's no coincidence. That I can help Mitt's liver and that the very long lasting, rhythmatic muscle spasm during our "procedure" is proof that I am.
Before Mike was put on morphine he had rough nights where he would quietly moan in his sleep and his breathing would sound irratic. I got in to the habit of laying very still beside him and imagining that tubes were connected from his liver to mine and I could help his liver filter all the excess it could not and send back through the tubes the needed fresh supply of the "good stuff".
Friends, I am very detailed in this process because as soon as I read the first scan from LA, I educated myself. The liver has over 300 functions and we need it to live, that's why it's called the "liver". Every night I visualize hooking our livers up and I go through my mental check list; help him process any food, help with his bile production, help him control acids, glucose and fats, help him fight infection, help clean his blood, help make enzymes and proteins needed. I lay still next to him and visualize this process. This became my middle of the night ritual. Last night in the middle of the night as I did this I got a muscle spasm on my right side, right where my liver is (you know the kind you get in your eyelid, arm or leg; the kind that has it's own rhythmic beat) and in my state of sleep deprivation I actually thought the vibration I was feeling was from my imaginary tubes. I continued to feel like I was in the middle of our liver transfusion all the while holding very still. This made me smile and I like to think that's it's no coincidence. That I can help Mitt's liver and that the very long lasting, rhythmatic muscle spasm during our "procedure" is proof that I am.
Wednesday, March 28, 2012
First Oncology Visit
Hello all, yesterday was a very grueling day for us. It started out rough for Mitt with pain and vomiting so I called Kaiser. They had told us we would have to wait for all the result to see an oncologist. I called them because we needed help now for pain and nausea management. We ended up with a same day oncology visit... I don't know why I looked forward to this visit; I felt no one but the ER doctor had listened to our long list of symptoms and I wanted someone to know...she did listen and I was grateful for that but the appt. was very emotional; she showed us the scans and pointed out how very large this aggressive cancer is. She said it is currently listed as Stage IV metastasized liver cancer from an unknown primary source. She said it's very important to get all the results in from the colonoscopy and endoscopy into Mike's stomach to see if they can locate the primary source as it will change his course of treatment. She said without treatment he has 6-9 months. With treatment maybe 1 or 2 years. She also said chemo has a 40-50% chance of working at all and told us several times that this was an aggressive form of cancer.
If Mike chooses chemo he will be on it for the rest of his life. (it is the only treatment she recommends; she said chemotherapy is the standard of care and the only proven method) We have not given up. We are anxious to have all the results back from the scopes that he will have done tomorrow. His next appt. with the oncologist is April 9th he will decide then if he will be going with chemo or an alternative treatment as it will most likely be then that we are informed of all of the test results. He is now on morphine and norco for pain and has three different perscriptions for his nausea. We are very grateful that his pain is under control.
I want to thank everyone for your prayers thoughtfulness and love as we feel you all with us. I am so incredibly proud of my Mitt! He faces this with bravery and continues to make all of those we meet on this medical journey, laugh and smile. Even in pain he continues to inspire me, his sense of humor reminds me many times a day why I fell instantly in love with him. I want to say special thanks to Jon Alden, Darcy Smith, Bev Zumpano and Sandra Hymowitz and to ALL our family and friends without your love we would be lost.
If Mike chooses chemo he will be on it for the rest of his life. (it is the only treatment she recommends; she said chemotherapy is the standard of care and the only proven method) We have not given up. We are anxious to have all the results back from the scopes that he will have done tomorrow. His next appt. with the oncologist is April 9th he will decide then if he will be going with chemo or an alternative treatment as it will most likely be then that we are informed of all of the test results. He is now on morphine and norco for pain and has three different perscriptions for his nausea. We are very grateful that his pain is under control.
I want to thank everyone for your prayers thoughtfulness and love as we feel you all with us. I am so incredibly proud of my Mitt! He faces this with bravery and continues to make all of those we meet on this medical journey, laugh and smile. Even in pain he continues to inspire me, his sense of humor reminds me many times a day why I fell instantly in love with him. I want to say special thanks to Jon Alden, Darcy Smith, Bev Zumpano and Sandra Hymowitz and to ALL our family and friends without your love we would be lost.
Monday, March 26, 2012
My Mitt
Thank you all for your support. We both are very grateful as your love, thoughts and prayers keep us uplifted and reminds us that we are not alone. This blog is named PapaMitt because Mike has two alias; Papa to his grand kids & kids and Mitt to me and friends.
We've known for quite sometime that Mitt was sick, the hard part was convincing his doctor. Over the past two years Mike has had many doctor appts. The symptom that bothered him the most was his loss of muscle with other symptoms; weight loss, pain, heartburn, a cough. On Feb 28 after being told no to getting a body scan at Kaiser, Mike went to LA out of network and had a body scan. We knew it would find something we just didn't know what. He was experiencing severe heartburn at the time so after researching online I thought it was pancreatic cancer. We were called on March 2 and told that a spot was found on his liver and I remember thinking "oh it's his liver that one little spot is sure causing a lot of problems". But the nurse that called us had a bit of a shaky voice so I was a little apprehensive. Then they faxed us the report and our hearts sank...4 liver lesions, we converted them to inches to fully understand... one 5 inch, one 3 inch and two 1 inch ones, we both felt like throwing up. We quickly looked up how big the liver is; it's a 6" x 8" organ in a football shape. We cut out pieces of paper and laid them out to get an idea of how much of his liver was involved. We were devastated it answered all our questions as to what was causing all his symptoms and the lesions along with symptoms told us it was cancer.
Kaiser then agreed to do a scan after seeing the results from LA. He had a scan at Kaiser March 9 which showed the same results and it was frustrating as we had to stay on them just to schedule the biopsy. The biopsy was done March 21 and on March 22 Mike was in such severe pain I rushed him to the ER and he was admitted to the hospital for internal bleeding. It was actually the ER doc who came in and told us it was cancer and of course by this point we already knew but it was still so hard to hear it. He stayed in the hospital Thursday through Saturday and while there his pain went from the pain from the internal bleeding which was in the middle of his abdomen to pain on his lower left side. The surgeon told us it was his colon. They believe his liver cancer is secondary and that they will find the primary cancer in his colon. We've had to wait for him to recover from biopsy to have the colonoscopy and a endoscopy of his esophagus and stomach it is scheduled Thurs. March 29. So next week sometime we should have all the results in and have a detailed diagnosis. As for his current condition he has had a rough morning, dry heaves and pain. Tomorrow he has a preop appt for Thursday's appt.
I will try to post all updates here as we have anything new to post.
Love to you. Chris
We've known for quite sometime that Mitt was sick, the hard part was convincing his doctor. Over the past two years Mike has had many doctor appts. The symptom that bothered him the most was his loss of muscle with other symptoms; weight loss, pain, heartburn, a cough. On Feb 28 after being told no to getting a body scan at Kaiser, Mike went to LA out of network and had a body scan. We knew it would find something we just didn't know what. He was experiencing severe heartburn at the time so after researching online I thought it was pancreatic cancer. We were called on March 2 and told that a spot was found on his liver and I remember thinking "oh it's his liver that one little spot is sure causing a lot of problems". But the nurse that called us had a bit of a shaky voice so I was a little apprehensive. Then they faxed us the report and our hearts sank...4 liver lesions, we converted them to inches to fully understand... one 5 inch, one 3 inch and two 1 inch ones, we both felt like throwing up. We quickly looked up how big the liver is; it's a 6" x 8" organ in a football shape. We cut out pieces of paper and laid them out to get an idea of how much of his liver was involved. We were devastated it answered all our questions as to what was causing all his symptoms and the lesions along with symptoms told us it was cancer.
Kaiser then agreed to do a scan after seeing the results from LA. He had a scan at Kaiser March 9 which showed the same results and it was frustrating as we had to stay on them just to schedule the biopsy. The biopsy was done March 21 and on March 22 Mike was in such severe pain I rushed him to the ER and he was admitted to the hospital for internal bleeding. It was actually the ER doc who came in and told us it was cancer and of course by this point we already knew but it was still so hard to hear it. He stayed in the hospital Thursday through Saturday and while there his pain went from the pain from the internal bleeding which was in the middle of his abdomen to pain on his lower left side. The surgeon told us it was his colon. They believe his liver cancer is secondary and that they will find the primary cancer in his colon. We've had to wait for him to recover from biopsy to have the colonoscopy and a endoscopy of his esophagus and stomach it is scheduled Thurs. March 29. So next week sometime we should have all the results in and have a detailed diagnosis. As for his current condition he has had a rough morning, dry heaves and pain. Tomorrow he has a preop appt for Thursday's appt.
I will try to post all updates here as we have anything new to post.
Love to you. Chris
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