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ilovemybear's Recent CancerCompass Activity

  • ilovemybear has replied to a post on the message board

    Karyn, What an awesome site that would be, our two brave warriors riding out of BT land grinning from ear to ear.  I think Kevin probably has his T-shirt on that says, "If its too loud, then your too old," : )  

    November 22, 2012 view post
    • ilovemybear has replied to a post on the message board

      Oh dear, sweet Karyn....xoxoxo back to you.   I absolutely get it when you describe Tom taking off on his Harley, cause I can't imagine Kevin heading out any other way than on his beloved motorcycle!  He always said riding renewed his soul and cleared his mind of clutter....he said it was his therapy. Find that island soon...soak up some rays....celebrate life!  Going to be right behin...

      November 21, 2012 view post
      • ilovemybear has created a new message board discussion

        Dear CC friends, Through tears and with a heavy heart I would like to share with all of you that after 3 years and 2-plus months, Kevin passed away Thursday night at 7pm. He did not seem to be in any pain, and he passed as peacefully as possibe.  I would like to go the rest of my life believing that he did not know what was happening to him at that point.  He was so very brave and fought as hard...

        November 17, 2012 view discussion
        • ilovemybear has replied to a post on the message board

          Awesome way to start the day!  Just what the doctor ordered! ((((BIG HUGS TO ALL))))) Melissa : )

          November 09, 2012 view post
          • ilovemybear has replied to a post on the message board

            Matt....so glad dosage issue resolved : ) My husband had no problems at all with the Temodar, except a little bit of nausea, but the Zofran was awesome for taking care of that issue.  I hope the same for your son! Melissa

            November 08, 2012 view post
            • ilovemybear has replied to a post on the message board

              Hi Matt.....ditto to what Randy1958 said.  However, through trial and error and my husband's work schedule at that time, he had to have something in his stomach after the Temodar, and it wasnt anything light.  He had terrible cravings for Taco Bell while he was on Temodar, so on his way home from work at 11:30 pm, he would text me and say, "Feel like it's time to make a run for the border." Most people...

              November 07, 2012 view post
              • ilovemybear has replied to a post on the message board

                Everyone....thank you so much for your kind and thoughtful words.  Still hanging in there.  As bitter sweet as it is, it makes me feel so much better knowing you all get me and understand this place called GBM world. Warm thoughts and many blessings to all.....stay strong no matter where you are in your journey! Melissa

                November 07, 2012 view post
                • ilovemybear has replied to a post on the message board

                  This may all be a shot in the dark, but I wonder if there is any chance Mayo would treat your husband's case as if they are a network provider?  I had to have surgery about 6 years ago, but the surgeon only did surgery at a hospital that was out of our network, so the hospital agreed to accept me as if they were an in network provider. I honestly don't know how they were able to do that, but they did. ...

                  November 07, 2012 view post
                  • ilovemybear has replied to a post on the message board

                    Hi there NINA78.  I am so sorry to hear about your mom.  Sounds like you are a wonderful daughter and caregiver to her : ) My husband barely eats at this point, and it has been challenging to find something that taste good and easy for him to swallow when he is hungry.  He is under hospice care at home.  He is near the end as well and no longer able to get out of his hospital bed, and he has...

                    November 07, 2012 view post
                    • ilovemybear has created a new message board discussion

                      Hello to everyone here at CC.  Just an update to recent post I did regarding my husband Kevin and hospice care. He is still under hospice care at home, but he no longer has good days where he smiles, tries to talk just a little or joke around.  He sleeps most of the time now.  Even though he is here physically, I miss hearing his voice...hearing him say he loves me...I miss everything about him. ...

                      November 05, 2012 view discussion
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                      About ilovemybear

                      Caregiver
                      Brain Cancer
                      Support

                      My 52-year-old husband, love of my life, Kevin or "Bear" as he is known to his family and close friends, was dx with GBM at the end of August 2009 after suffering a seizure while out of town helping our son and D-I-L move to the state where we live. He was taken to two different hospitals in Kentucky. MRI showed lesion on right side of his brain. Docs didn't want to release him, but Kevin insisted, telling them he just wanted to get home. They let him go makng him promise to get to a hospital as soon as he got home.Unsure of where to take him, we ended up at a small hospital with no neurologists or neurosurgeons. Not even sure how I picked that one..it wasn't even in our town. It was so late and Kevin hadn't eaten or slept for more than 24 hours, and we just drove. It felt like we were in a nightmare. The emergency room doctor said we needed a neurosurgeon and he knew of a great one at UT Medical Center. He made a call, a call that led us to that wonderful neurosurgeon. An ambulance took Kevin to UT. He was scheduled for surgery, a successful surgery with the newest of equipment. We were given the devasting news, he had a small GBM in the right frontal area. His neurosurgeon told us that they were able to get all of the tumor, as it was small and was just barely sitting on the surface of the brain. I am told this is considered an ideal situation for a neurosurgeon. I felt my knees buckle and could only think, what would I do without Kevin. I finally got to see Kevin after surgery. He was awake...happy to see me...happy to be alive, but he was so hungry! It took an act of congress to get him something to eat..but finally, the bear got fed! All was right with the world at that moment. We were then led to the best radiation oncologist on this earth, a true angel of God. When you thank him for the care he has given you, he is very gracious, but he says to give all the thanks and credit to God. At the end of every visit, he would say, "you are in my prayers, my friend." He was honest, but he also left you with hope in what seemed like such a hopeless situation. As Kevin was going through radiation, and you start to meet other people going through radiation, we found out Kevin's radiologist-oncologist was in high demand. He was booked 4 months out! How did we get so lucky? Devine intervention is my guess. We then were led to an oncologist, who also made it is so very clear how devasting this disease is and that there is no cure as of yet, only treatment, but never once did any of these doctors put a timeline on Kevin's life. We aren't kidding ourselves, we know the possibilities, but we choose to live our lives the best that we can...one day...one minute...one second at a time. Kevin made it through radiation/chemo. There was a time in the beginning where he thought he couldn't do the Temodar, but he made it through that time and his body eventually adjusted to the Temodar. His main question to all the doctors from the time he woke up from surgery, "when can I go back to work?" He got to rest a little bit before starting back on the Temodar, 5 days on/23 days off regimen. He got pretty sick a couple of times in the very beginning and he was so fatigued. Now, he just feels kind of nauseous, but nothing that Zofran can't cure. I still have terrible anxiety each time he is due for an MRI and especially when we go to get the results...he just pats my hand and tells me not to be afraid and that everything will be okay. He says to trust him. I pray constantly for continued good health for Kevin and comfort for us both. I know God led us to that little hospital, that I most likely would never be able to find again, and that ER doctor who made that call which led us to a wonderful group of dotors and medical staff that made this very scary situation a little less scary. There was a prayer chain that seemed to go on forever and it still does to this day. When Kevin got home, a gentleman he used to work with, and who is also a minister, came over to see Kevin and to pray with us. I have never felt so blessed to where it was overwhelming, but in a good way! My husband and I pray together every night. He says he has felt God with him from the beginning. They said that Kevin had the seizure because he was sleep deprived. He had gotten off work at 11 pm and then drove 3 hours to his son's house...still no sleep, he started loading the truck, that's when the seizure hit. Otherwise,because the tumor was so small, he could have gone a little longer before the tumor was found. Thank God for our son and daughter-in-law's "5-year plan" to move here were we live, otherwise Kevin wouldn't have drove through the night with no sleep. God does work in mysterious ways. Blessings to all! After 18 months, Kevin is still on Temodar 560 mg 5 days on/23 days off. It's felt that this is keeping tumor recurrence at bay. He gets his MRI again on March 15. I pray the Temodar is still doing it's job! March MRI still clear!
                      May 24, 2011, Well, Kevin's first scan to show "something" per oncologist, and "two very, very tiny dots" per neurosurgeon. : ( I am so sad and so afraid that we are moving to the next phase of this journey. Kevin says he doesn't feel any different and isn't going to worry until they tell him there's something to worry about. He just wants to live his life as normal as possible for as long as possible. I want that for him too...I want that for us!
                      July 8, 2011: Area of interest a little larger. Oncologist feels this is tumor trying to get started. No more Temodar. Start Avastin and CPT-11 on 7/22. We are still in the fight! Avastin went well, but no CPT-11 due to low blood count. Going to try it next time, if blood count up. He did have spike in BP and terrible headache 2nd day after Avastin. Ended up in ER due to head pain. CT revealed no problems. Vist with family doc next day. Increased BP med and a further increase day before, day of, and day after treatment. BP back to normal and he is feeling pretty darn good! Back to work and ready to keep fighting! Next treatment date, Aug. 5. In this fight 2 years at end of this month! God is still great! August 5, 2011: Avastin again, but no CPT-11. White count still too low. Will try again on 8/19! Aug 9: Had a port put in to make it easier on everyone to get the infusion. Kevin is a tough stick! 8/15: Saw neurosurgeon. He went over scan from July 5 with us. He told us that there are now 4 to 5 tiny white dots deep in the brain below where original tumor had been. Spots have not enlarged and still too tiny for surgery. He is happy oncologist started Kevin on Avastin. Another scan scheduled for Sept 23. Kevin put on Avastin and then finally the additon of CPT-11. Had port placemnt in August of 2011, but unfortuantely incision did not heal well at first. I am happy to say that the incision is starting to heal quite nicely. No more infection! Oct 21, 2011: Last MRI (Sept 2001) showed some improvement, so off the CPT-11 for now. He did have some awful muscle spasms, but once CPT-11 discontinued, muscle spasms competely disappeared! He was also put on dex for a short while over the summer, but eventually tapered off with no difficulty. He is doing so much better since stopping dex and CPT-11. Energy coming back. He actually just started feeling up to doing some overtime! Kevin is Kevin again! Next MRI is Nov. 7, 2011.

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