Thursday, February 12, 2009

looking a gift horse in the mouth

Lately, I feel like I have been looking a gift horse in the mouth.

I can't make sense of the origin of that phrase and I have no idea if I used it correctly or not. Brian loves to tease me regarding my incorrect use of my limited vocabulary or my mispronunciation of a word or my confusion of a commonly used cliche. So, if nothing else, it is good for a laugh.

Seriously, though, I feel as though lately, with as good as Brian is feeling (Does one feel good or does one feel well? For the purposes of this blog post, Brian is going to feel good, but if someone corrects me in the comments next time he may feel well.) we are not spending our time just enjoying it as we should be. You see, just three weeks ago, Brian was showing all the signs of someone succumbing to the progression of this disease - the memory issues, the balance, the speech, the vomiting - all are signs of the disease taking over the brain. Then, we quit chemo. A week later, Brian's memory was restored, his balance and speech improved and his vomiting subsided.

And for the last two and a half weeks, Brian has maintained a very promising quality of life. So much so, that it raises much question amongst myself and many others as to whether or not Brian could be showing signs of improvement in the areas of the tumor progression. Was it the chemo that helped that? Or was it getting off chemo that helped with his current condition? How could we tell for sure?

One way to tell would be to have another MRI performed. But then what? The doctors would never say that Brian is cancer free again. I know my God is capable of healing Brian, but my heart and my mind are colliding here. While Brian is showing signs of improvement in the memory and balance categories, in the last two weeks his right hand has lost a little more function and his speech is hit or miss. His speech is markedly worse than it was in October when we found out the cancer was growing again, but only marginally worse than it was in December. He has been having some issues with vomiting here and there. He vomits in the morning about two to four times a week. Also, his memory, while better than it was two weeks ago, is not up to the status it was a month ago.

So it continues to beg the question - if we did another test, THEN WHAT? Based on Brian's current condition, logic tells us that the tumor is still progressing some or he would have the function in his right hand and leg returned. He would be speaking clearly. He would have energy and endurance. He does not. So, if an MRI shows that the cancer did shrink some in the cerebellum and brain stem, etc causing some improvements in his memory as a result of the chemo, does it matter? Brian remembers almost NOTHING from the week and a half in early January when he started to take a sudden turn for the worse. He doesn't remember the good or bad moments - not the doctor's visit, not Spamalot, not the vomiting, not the falling, etc. If the chemo did shrink things, having Brian in the condition he was to get to the point where we are today is so not worth it. It was not quality time. I would even go so far as to call it terrible.

Does this make sense?

And why do I write this? Why am I unloading all of this and writing out these thoughts and the conversations Brian and I have had over and over the last three weeks?

A few weeks ago Brian was so bad that the doctors and I thought Brian had, at best, a few weeks remaining. We made a decision to get under hospice care and move forward from there. Our assumption was that Brian would continue to decline. That has not been the case, so it makes the decision to go under hospice care and cease treatments confusing for many. Many people assume hospice means that the very end is imminent. I am getting many questions from friends and family as to why we aren't considering more. It makes it very difficult to accept our decision and carry on right now. Brian and I have talked the issue into the ground. We have thought it through and prayed about it. What we are experiencing with Brian right now with respect to how good he feels, is a gift. It is a gift of time and life we didn't think we would have. Why is it that is not enough?

I spoke with the hospice nurse yesterday regarding Brian's condition and progress. I explained that it is confusing how he has improved so much. It is difficult to accept the decision and live out our days right now. She explained that Brian is young. He has this shunt which is probably helping. There is no formula for what to expect from here. But, Brian does show slight signs of worsening - the vomiting, the weakening of the hand, etc. They are slight and slow and that is good. Hospice has a sometime unfair black cloud that follows its name. We wouldn't be under hospice care if this was not what was best for Brian and our family.


Brian's doctor knew the last chemotherapy would probably not do much for Brian based on how his last two scans had looked. Yet, he took a risk and gave us hope for one more shot. It was not overly surprising to him that Brian's disease progressed anyway. It was devastating to him. He cried with me in his office as he wrote the order for hospice. He did not want Brian to be in this situation any more than we did. We have done all there is to do. He was there with us every step of the way - believing, hoping, laughing and crying.

So, being under hospice care doesn't mean we have all given up. It simply means we have moved on.

And I want to enjoy this time. I feel like I am not enjoying this time because of the pressure coming from myself, friends and family to consider Brian's condition and what to do from here. I feel like we haven't come to peace with our decision and I want to come to peace with the decision. I want to live what time we have remaining in peace. I CRAVE and BEG for PEACE!

Please pray for peace in this decision and this time. The boys included. It is confusing to be told Daddy is dying and to spend our time with him and then to see him improve. It is encouraging to see him at one of their soccer games, then it is scary to see him unexpectedly vomit in the morning. Gavin thinks he should go to the children's hospital where he went because they are good at making people better. He has told me there are other doctors that can still help. Why won't we try them? Why won't God heal Daddy? Doesn't He love us enough?

He does love us enough. He has given us this amazing quality of life and some time to enjoy it. Please pray we maximize it.

KEEP BELIEVING

39 comments:

  1. Hugs, hugs, hugs during this good/bad time...

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  2. It is hard to be resigned when that darn old thing called hope keeps cropping up. Your instincts to live in the moment and enjoy whatever time you have left together are right on. You know what you witnessed before you "gave up." Others don't. You might need to ask them (gently) to back off.

    Did you follow what happened with Art Buchwald (famous humorist) a couple of years ago? He was old and a variety of things were wrong with him (diabetes, primarily, affecting his kidneys, circulation, etc). His doctors told him he would have to go on dialysis or he would be dead within weeks and he said, "I'm done." He moved into the DC hospice and spent the next 6 months holding court, as it were, with all the friends and admirers who came to say good-bye. He had a grand old time, and so did everyone else (including the nurses at hospice). Then they kicked him out because he wasn't dead. I think he spent the summer with his family on Martha's Vineyard and passed away (peacefully) some months after that.

    And I can't believe I know this, but -

    When horse dealers (my great-grandfather was one) bought a horse, they would always look at its teeth to determine its age (sellers would often lie). So the idea behind the saying was, "If someone wants to give you a horse, don't be getting all picky about how old it is. Just take it!" Get it?

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  3. Signing up with Hospice is not admitting defeat or even saying that the end is near. It is a step to help family, friends and indeed the patient walk a path of unknown length and to enjoy as many of the steps as possible. Playing cards, having a contest to see who can stand on their head longest is the enjoyment. See minor symptoms change is a step that may bring tears. Having Gavin offer his doctors to help Daddy is a joy for he is doing just what you and Brian have done. He is looking for the gold lining. He is believing in a miracle.
    Sometimes the miracle is only the happiness of a moment that you will remember for your lifetime. Sometimes it is a longer step on the road of life that you didn't expect and then get to enjoy.
    Love is a many sided object that you and your family will treasure always. Be blessed in the days you are having and don't let others tell you their expectations. Live your life with your expectations one day at a time and let our Saviour show you the wonder in each day.

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  4. As the one person on earth who knows Brian best, loves him the most, you deserve to be released from the pressures you are feeling. You should enjoy this time together. Speculation by others now only serves to hurt you all. Hind sight later will do the same. No one should be doing that to you. (It will take everything you have to not do it to yourself).

    Sounds like the medical remedies have been exhausted. Regardless of what happens next, miraculous healing or freedom from this human world, your family is a testimony to your faith in God. You all have been given a certain credibility that this disease brings and you have used it well and I am sure you will continue to no matter what happens in the future.

    You all deserve peace and I pray you receive it.

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  5. Angie - one of my best friends died from cancer at the age of 33 years old. I helped his wife with this type of issue - and served as the liason between her and family..her and doctors..her and just about anybody and anything that would increase this pressure you are feeling. If you have someone who could do that for you...use them...they too are a gift from God..given to you in your time of need. My role was simple - I just made sure that everyone knew the decision was made and that calling it into question was unacceptable. I suggested they pray rather than spend their time looking up treatment options from Africa. I didn't care if it made people upset - or angry. I did deal with family with kid gloves - knowing they were suffering too - but the Spirit gave me the words and this significantly helped my friends family.

    You, and your family, are children of God, blessed and dearly loved. Our inheritance is assured. Our hope is in Him. (Can you tell I've been reading Romans?)

    My God's peace invade your life - and drive out all of the joy-robbing-doubt.

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  6. Angie,

    I pray for you to have peace and clarity and discernment. I personally believe that you have made wise and well-informed decisions all along, based upon all of the information and expert opinions you could possibly gather. There is a difference between friends and family wishing to support and help you, and second-guessing your decisions and chosen path. I will pray that your friends and family will help you and support your decisions and decision-making. Finally, I will pray that you will see as clearly as I that your love, care, faith, heart, and mind have guided you and Brian to the place God intended for your family each step of the way.

    XO

    Still believing.

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  7. I think your instinct is ultimately driven by your heart and I, too, continue to pray for your entire family along with lots of clarity and strength.

    xoxo.

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  8. Angie
    I have read your blog today and in fact, I have always read them Your are a strong individual and have a good insight. I can relate in many ways and let me assure you that there is no right or wrong. It is a personal thing and I mean what can be right for one is not the answer for another. You both are special people and are in my thoughts and prayers. May God be with both of you.

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  9. Angie -
    I pray the pressure will stop from others. I so appreciate your honesty with this post. I think it takes a lot of guts to say what you said, but I also think you needed to say it. I don't think anyone can second-guess the decisions that Brian and you have carefully made. Even if someone else might choose a different path, that doesn't make that path right for you. At some point, you must say, "Enough is enough!" and choose to enjoy the time you have left. I am so glad Brian is feeling well/good enough for you all to do that! What a miracle!! Certainly makes me Keep Believing!
    Love,
    Marcie

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  10. Angie, take one day at a time and be thankful for that day/particular moment.

    I'm sure God has much in store for you, and will give you strength and understanding as needed.

    I'm not sure I could keep such a positive outlook on life if I was faced with all you have faced in the past number of years.
    You are a very strong woman, and I know God has given you this strength.

    So accept help from others, whichever way you can get it and live life to the fullest, one day, one moment at a time.
    God Bless you and your family.
    Will continue to pray for you.

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  11. You deserve peace. I'm praying you find it and I'm rejoicing in this time you have together as a family to enjoy each other.

    If the hospice helps you, then get it, use it and embrace it. To heck with everyone else and try to tell yourself to treat YOU like YOU'RE a friend, maybe that'll help take some of the pressure off you're putting on yourself. Don't be too hard on yourself.

    I have no idea about horses or feeling good or feeling well. Just let it all pour out however it comes out here, if it's cathartic it's all good. er, well.

    Hugs, prayers and still believing up here too. XOXO

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  12. I've never been in your shoes, so what do I know? Except that I think you are doing the right thing. Life is quality, not quantity, and if definitely sounds like your days are better with him off chemo than on. I hope you find the peace you need, because I am a stranger who feels you are doing the right thing.

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  13. Angie,
    God has given you a special gift and I firmly believe He wants you to spend this precious time with Brian and the boys doing what all of you feel is most valuable and enjoyable. As much as others want what is best, only you and your family can determine what is right for you. Take this time and live life to its fullest-enjoy each day you are blessed with and don't let any comments from others make you and Brian second guess your decisions. You have been a wonderful wife, loving in every way and Brian wants to spend this time with the people he loves the most. Wrap your family in God's loving arms and praise Him for the time you have. Continued prayers and peace to all.

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  14. I am praying for the kind of peace that only God can bring you and I am praying that well-intentioned friends and family will know when to keep their mouths closed! :)

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  15. God Bless you all, Angie.

    I also know the "gift horse" reasoning...glad you got the "answer"...go ahead and use that saying anytime!
    Pax.

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  16. This is a gift...to be able to have "Brian" back right now is truly a miracle all by itself. He wasn't "here" in January...and it was breaking your heart to see him like that. You both deserve to have the time together be good time...however long this may be...enjoy it...and don't let satan steal your treasured time together with the second guessing and the often "good" intentions of friend's and family's questions. I truly believe that you are being attacked by the enemy because you both know without a doubt where Brian is headed...and that it brings Brian no fear...satan wants you both to fear and be uneasy, and to rob you both of your joy right now. I LOVE the fact that you are aware...and are not going to let him win! You go girl!!!!!!

    Love ya'
    Kris

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  17. Angie and Brian and family, you have no idea how many prayers are being said for you all. The extended Fennell family are all sending prayers. We all love you and are keeping you in our thoughts all the time.
    Love, Pete and family

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  18. Continuing to pray for peace for you and your sweet family...

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  19. I have worked as a hospice nurse too. I understand what you are saying. Have you thought of trying any alternative therapies? Some cancers respond to intensive vegetable juicing like the Hallelujah diet. George Malkmus It's not toxic or difficult to do and sometimes it makes people feel they are doing something, instead of nothing. Some people do get better. Some people do get healed by God. And many die of cancer. Hospice is about palliative care not cure. But our cancer cures are still not cures, they can be more like crap shoots. If the chemo was destroying his quality of life and not being beneficial then you have done the right thing.
    People also rally before they go, it could also be that; not to rain on your happy time.

    A lot of people are praying for you. As long as there is life there is hope!

    You have signs of tumor progression you see them. Much of his relief is probably getting away from the chemo and good symptom management by the hospice nurses. Enjoy every minute. Pray about any alternative treatments that could maybe help but not harm.

    Be gentle with yourself. Hopsice is a wonderful gift to the patient and the family. When you really come to grips with this, and it is a 3 steps forward 2 steps back deal, concentrate on making Brian's life and home going as beautiful as it can be. Just love.

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  20. Still following along on your family's journey and so thrilled that you're able to have continued quality time together.

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  21. I try to educate people about hospice care whenever I can. You can have hospice if you have 18 months to live. The point of hospice is to support the family so that they can enjoy the time they have left. I have heard your frustration with wasting precious days away from your loved ones sitting in medical offices. Hospice is the answer to that. If Brian is to benefit from a miracle, it will happen with or without hospice.

    It breaks my heart to think that you have guilt over any of this. I have "seen" your fight and your work toward finding peace. I have seen others in real life go through this same struggle. From my vantage point you and Brian are making exactly the right choices and the ones I would hope to make for myself if I find myself in a similar situation.

    You KNOW in your heart what you're doing is right for your family. Please try to let go of the guilt and enjoy each day. You are never far from my thoughts.

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  22. I just want to tell you that whatever you and Brian decide IS the best decision you can make. My thoughts and prayers are with you.... I can't imagine what you're going through, but it is quite evident that you have faith in God. I know He will be there for you every step of the way.

    believing and praying and sending hugs your way...
    Roban

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  23. So many people worry that hope can be "false hope". I say hope is hope, it gets us through the day and gives us peace. If the hope that Brian's cancer might not be progressing gives you peace for today, let it.

    Peace and prayers...

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  24. Hospice is amazing . . . they are there for you as much as they are there for him.

    As for Brian, just keep surrounding him with joy and peace, like you have been. Be happy. Be deliriously happy.

    And just remember . . . Keep Believing. Lots of love your way. L

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  25. Hi ang,
    People are idiots. I knew this one guy who asked a fat woman ‘when are you due?’. no, it wasn’t me ,it was my dad. I think people don’t want to have to grasp that Brian and you have been dealing with this for over a decade. I know I don’t. But something I have learned and your alls life story has reinforced is we cant go back . We can only go forward and know our decisions of how we live today will guide us down the path of where we will be tomorrow, next week, next year and so on. My wife always says ‘why didn’t we get together sooner?’ and I always say ‘because you wouldn’t have liked me if you had met me sooner’.

    I don’t think Brian is superman and you are superwoman. I just think you are super people and this opinion has not changed in 18 years. It has only been confirmed. Your decisions and the way you all choose to live life have influenced my path and many others for the better. I cant change anything or help. The only thing I can do is give you a hug and maybe play cards again and drink beer. I hope I have not offended you with anything I have written. If so, you can call me an idiot. My wife would not argue.
    ben

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  26. Angie, as a total stranger, on the outside looking in, I get it. I can understand how you would be second guessing your decisions, and feeling guilt/pressure/remorse every time a loved one presses you for an explanation. But you, Brian, and his doctors have reached a difficult decision to stop treatments. Remember why? Because the chemo was so hard on Brian, and it was interferring with is quality of life while not helping rid his cancer or symptoms. You chose a quality of life, and God listened. He's giving you guys this gift of time, a slow progression, days of feeling good and spending life together, time to make memories with his sons. It's all a gift, it's all a blessing. If there is no cure, why prolong the treatments and the awful side effects? Live each day to the fullest, accept the support of hospice as you need it, and encourage questioning family and friends to join in your celebration of Brian's life.
    Most of all, know your family is loved and prayed for, even by total strangers : )

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  27. Dear Angie, Thanks for sharing this. Your blogs make me grow every time you post one. KEEP BELIEVING rocks! Always in our prayers. Monika.

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  28. Anyone who questions the decisions that you and Brian have prayed over you can refer to me. I will set 'em straight. I'll kinda be your body guard - long distance - since if I was close people would be able to see that they could probably blow me over. But I have a mean mommy stare that might scare them a bit.

    Oh, and the propensity to mess with common phrases and get them all messed up and intertwined with each other is an endearing characteristic that we share. My husband is driven CRAZY by it as well...

    Enjoy today.

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  29. Just Chicken Feed posted this almost a year ago. It's amazing and brought me peace even/especially when my dad died. I just love the simple prayer of it.

    http://justchickenfeed.com/2008/03/fathers-love.html

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  30. I am so thankful to hear that he is doing "better" and truly enjoying this time with you and your families. Definitely makes me smile :-) Happy V-Day tomorrow!

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  31. In my very short exposure to hospice nursing, I worked alongside a family who struggled with similar issues regarding their loved ones progress. They also had family members questioning their decisions. I pray that others will understand and respect your decisions. You deserve peace. You all deserve peace.

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  32. There is no "right" way to walk a path like this. But you have good doctors and good people who are helping you make the best decisions for you and Brian and your family. I know that when my brother was diagnosed with terminal cancer I just felt helpless.

    People always want to "do" something or just making sure someone is "doing" something about it. Sometimes the only thing to do is just accept the unacceptable and move on. You are in my prayers.

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  33. Angie,

    Hospice is a hard decision...you feel like you have been fighting and fighting, and then you just stop. It can feel like you have lost your direction. But hospice is a wonderfull thing, if you take advantage of it... it's not just about pain meds...its about acceptance and respect for whatever your decisions are... its a great support system for the kids... its knowing someone is there if you need them in the middle of the night but that they will respect your need for space if you ask for it.

    I know for us, chemo and fighting for life became our way of life. I didn't know anything else. It was all we had done for an entire year. I was living at the hospital, and the neuro -oncology team was like my second family. Especially when you are a driven person by nature, it can be hard to let go of what has been your focus for so long. During the "fight", you don't have time to think, just react (this can be also be a kind of shelter from your emotions). When you stop, you have too much time to think and face emotions(would have, could have, should haves all come to mind)

    Ultimately, our decision to stop treatment was not an admission of defeat, but really a battle won. We chose to enjoy life (however short)... "Quality over Quantity". And no, by wanting more time your not "looking a gift horse in the mouth", thats love, and that feeling will never go away.

    You guy's look so happy in all your pic's... that is something that would be hard to do if Brian was neutropenic and vomitting. Whatever choice you make with Brian is the right one. Don't second guess yourself, and don't listen to others... they mean well, but are dealing with their own grief (the first phase is denial) and unless they have lived it, can only try to understand.

    I know, its hard to explain when people see Brian getting better. Brain tumors are alot less predictable than other cancers... you never know how someone will respond or how long they will survive... not to mention that their bodies do not physically deteriorate, like with most cancers... Which can be a blessing... because Brian is "healthy" enough to spend quality time together.

    Enjoy your time, be content with your decisions, your heart will tell you what to do... don't let your head overthink things. I am praying for you all :)

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  34. the way that you believe. make an active choice to believe. it is inspiring. i will keep praying.

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  35. New here... I love how God stumbles people together, I don't usually have time to visit new blogs. I just wanted to say I was here, and to say that I am praying that you can find that supernatural peace. I've had it too many times, and I know you will get it. Praying for you in Indiana.

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  36. Just thinking of you, and being grateful that you've been granted more good time with Brian.

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  37. Angie, I am so thankful that your family is having so much quality time. It is a gift from God. Enjoy every minute of it.

    Noelle

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  38. Moments. That's what life is truly made up of. Just moments. Moments that sometimes take our breath away - some with laughter; others with sobs; yet others with wonder. You have been given the gift of this moment in time in which, by some miracle, you are so often experiencing all three at once. And in that experience you are gaining strength and wisdom, and teaching your children how to live and love and thrive through the worst possible event of any child's life. If others cannot see your need to grab this moment and hang on by whatever means necessary, then those others have probably never had to live in the shadow of death. I am happy for them, but at the same time I sort of pity them because they have no idea what is coming. Maybe in THEIR next moment.

    Angie, don't you let one person make you doubt your decision to live in the moments you have. Don't you let anyone or anything shake your confidence that God is there with you. And don't ever doubt for a second that you are loved and are being held up in our prayers.

    Praying for peaceful moments for you and your guys - even through the hardest times. xoxoxo

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