cindy0519

Ahhhhhh....yes Linda. You have hit the nail on the head. This is exactly what I am struggling with as well... "My unsettledness comes from wondering whether I will mix as strong a mortar as my foundation contains for the rest of me. " I too know that all he taught me throughout my life, all that I have learned through life experience ect will indeed help me to "find my way" --it was just nice to always have the additional comfort of his advice/support and I miss it immensely already! You have really helped me to clarify my thoughts and it really helps very much....a BIG THANKS to you!!

sap67, I just wanted to comment on your remark about remembering the good times because I can really relate in many ways to your comment. I know deep down in my gut (and hold tight to this gut feeling) that in time I will be able to recall more of the good times rather than the horror of what this disease had done to my Dad and the effects of it on his poor body - especially those last few precious days. I cried and cried while stroking my Dad's very thin and sunken face immediately after his death because I couldn't remember his face. Not his "cancer" face -- but the face of my Dad...full of light, love, and life with his half smirk smile... the face I knew and loved for so many years. It had been so long since I had seen it and at that very moment I really need to see it..if only in my minds eye and was not able to. Though my siblings and my SM tried and tried to comfort me and kept saying it would return in time, I was nearly inconsolable. I was SO scared that all my precious memories would be overshadowed by cancer related events/memories that had occured in his/my life in the last year and that I would not be able to recall that silly half smirk smile again. It's just a few days over two months since his death - but I can honestly say that there are brief moments when I am talking about him and I "see" the face of "my Dad" -- it always floods me with a warm feeling, brings a smile to my face and a light to my heart, even if it is just for those few brief moments. I pray that you will find more good memories in the days to come and that the emotional rawness of your Mom's passing will lessen with time. I understand and share many of the same feelings! Wishing you comfort and peace, Cindy

The advice and the little things I never really paid much attention to before are indeed the things that leaving me feeling a bit "unstable" now too Linda. If I could use an anology -- you know if you look at a brick foundation for a house ...you see the bricks and even if you can not see much or any of the cement between them you know it is there and you know it is holding everything together. Guess in ways I never before realized or recogonized.. my Dad was my cement - he helped me to build the foundation of the person that I am. So now I am feeling more and more like a large part of the cement has gone from the bricks and all the bricks are beginning to shift ever so slightly without the presence of the cement. The "thing" I am searching/longing for... is how to keep them all where the belong without the whole thing crumbling to the ground until I can allow myself to add/create new cement! While my Dad was so far away (him in Az and me in Oh) there was never a question that if I really needed anything - he was only a phone call away. There haven't been more than a couple times in my life when that "urgent" phone call has been necessary -- but now it isn't even an option...and that hurts!! Between this and the fact that Dad was just beginning to reconnect with his grandchildren who are now young adults and was really looking forward to sharing all the exciting events that happen in a young adults life with them - now both they and Dad are missing out on those shared times. I see all that is happening in their lives now and know how proud their Grandpa would be and how much he want to be a part of it all....just makes me sad to my core! The Explorer that my daughter drives had a brake cylinder lock up and a brake line break last night while she was on the way to a friends house - thank God she was able to control the thing and not hit anyone or anything... but my first instinct after making sure she was safe was to call Dad (who was a heavy duty mechanic)to see what he thought might be looking at for repairs. This was our normal routine when we had car repair issues... I was actually dialing the phone before I realized he is not there . Its just things like this ...the simple everyday life things really - that are compounded by missing him and leave me feeling weak and more than a tad unstable at times. Thank God he raised us to be strong, indepedent individuals... otherwise I think the crumpling could happen very easily at this point . Lori - thanks for you kind words, I really needed them-- made me teary reading your reply. Have to say that you as well as one of the people from this board that I have always looked up to as well. Your strength and determination to overcome despite all the challenges... is VERY admirable! So I am touch that you would say that you look up to me. THANKS! So thankful for everyone here (and for this board) - its nice to know that there is a place to just let my mind wander! Right now its seems that DH is so worried about how I am taking Dad's death, that every tear or sad moment seems to equal deep depression in his mind. So I find myself trying not minimize his exposure to my sadness at times and being able to come here and just say what is in my mind/heart really helps! God Bless, Cindy

I too keep returning to this post -- really feeling the need to reply. Your emotion and love always seems to jump from the page and touch my heart - making mere words seem so inadequate as a respone. Send you prayers and wishes for better days as you travel on this "road of grief". Cindy

Sunday marked two months now since my Dad died. In many ways it really isn't getting easier.. just clearer what his presence in my/our life really meant to me/my entire family. His passing has left such a remarkable hole in my heart and life. Funny how you never realize how much your parents are "part" of you even though they might not be active in your day to day life until they are gone. Feels like a huge part of my very foundation is gone and I find myself struggling with how to "recreate" the sense of stability that exsisted in just knowing he was always there. Some days it just hurts like hell and I want the whole world stop and just take a few minutes to acknowledge what a great man he was and how much the world (and especially his family) has lost now that he is gone. Life has begun to return to its normal random crazyness. My youngest daughter is off to college this week (moves into dorms on Friday), we have been in search of a new car for her to take to college (she currently drives our Explorer that is $$$$$ gas wise, so looking for something more economical gas wise). She is the first child in our family to go to a traditonal college right out of high school. Dad would have been SO proud of her..would have just made him beam with pride! I can't bring myself to tell her that because every time I think about it -- I sob. She is so excited that I cannot bring myself to bring her down with my sadness, so I just leave it unspoken. I have been so busy with all that is involved in getting her off to college, all that is going on at work and just everyday life that it seems there is no time to even briefly acknowledge that there are days where just gettting out of bed and not pulling the covers over my head and crying the day away - is an amazing accomplishment! I will fully admit however that I have not verbally told anyone that I need this acknowledgement either. Just needed to vent a bit and acknowledge what a big part of my life my Dad was and just how much "less" many aspects of my life seem without him. I love you Dad -- you will always be in my heart! I miss you more than I ever could have imagined!!

Lori, Not sure if the dosage you describe is "high" or not..my advice would be if it is not giving your mom the need pain relief then it is time to either try increasing it or try something else. I would talk to the doctor/hospice and not let them tell you that it all they can do... they can do more!!! One of our biggest battles with Dad was getting him to take his break through pain meds (oxycodone/percoset) as prescribed. He seemed to think that he only needed to take one a day. The problem with this is that the pain becomes so much that the medicine cannot keep up with it. It must be taken on the schedule prescribed to really have the desired/needed effect. We never could get Dad to understand this.. and it was a battle for us at times. Hopefully this is not the case with your mom. We also tried several different dosage combinations of oxycodone, percoset, and the fentanyl patch. Dad's dosages did need to increase as his disease progressed, so the correct dosage was somewhat of a moving target at times. His oncologist was wonderful about this however and we would just call and he would increase the dosage of Dads fentanyl patch as it is what seemed to give him the most constitant long term pain relief. Oxycontin come's in doses of 10mg, 20mgs. 40 mgs, 80mgs and 160mgs so you can see by this that there are more options for just the oxycotin. Also wanted to mention that if your mom is taking percoset and is experiencing any sort of naseau - the percoset also contains tylenol which can upset the stomach and has been found to cause liver issues as well. I know that the hopsice that Dad was in gave him the percoset in a liquid form wihtout the tylenol in it. It worked really well for Dad for break through pain control. Talk to the medical team Lori -- there is more than can do, they just have to be willing (or forcefully pushed ) to find the right medications in the right combinations/dosages! Hope they are able to do this SOON and your mom gets some pain relief.

Sorry to hear that things with your mom are not going well. I hope that they are able to get her pain under control quickly...whatever it takes! You are doing amazing things for your mom! You are both blessed to have each other! Prayers for peace for all of you, Cindy

(((Melinda))) I am SO sorry that your family has arrived at this heartbreaking point of the journey! It is indeed a scary, new and foreign part of the journey. Like your Mom, my Dad was not ready to "give up" or accept that death was the next logical step in his journey. In early May he was referred to hospice but refused it saying "I don't need hospice, when I do will will discuss it but until then don't bring it up again." I think he really felt that hopsice was giving up and he didn't want any of us (or himself) to do that! Unfortunatley by mid June it was clear that we were out of treatment alternatives and I told Dad that he/we needed to think of hospice not as giving up - but rather as an alternative way of continuing to hope and live. No more struggles with treatment complications, hospital stays that produced the same results time after time, no more doctors visits that he physically could not manage very well...hospice care would finally bring him (and us) some much needed peace and the ability to focus on "living" and not treatment. If he found that he was strong enough to go back to treatment or just didn't feel that hospice was the right choice we could always say "no thank you" and try something else. After this conversation, he agreed and he entered a hospice home which I honestly think did bring us all the sense of peace that we longed for. Once in the hopsice house - neither we nor the staff (who was remarkable!) ever discouraged or diminished Dad's amazing senses of hope. In fact, the day before he died one of the nurse spent over an hour with Dad and I "planning" Dad's return home. We discussed what would be different at home, how things might work or not work, what obsticles there would be and what SM might think of the idea of Dad being at home. But never once did anyone ever (even in a small way) do anything to take away his hope! As we had throughout his illness, Dad and I talked about death not from a imminent prespective, but rather from a in the future prespective. This seemed to allow Dad the comfort level that he needed while not make either of us feel like the other was giving up. It allowed us to have the discussions and plan the things that we needed to without it all feeling so overwhelming and emotionally raw. I found that I always had to start these discussions (and was the only one that he would talk to about death)and had to limit the length of the discussion to remain in Dad's comfort zone. We had many "small" discussions and only talked about one specific thing each time. When one or the other of us would become emotional Dad would quickly end the conversation so I had to make sure to keep my emotions in check during these talks...but it worked for us. The eating or lack there of issues was one of the hardest things for my family to accept! It seemed so counter intutative for anyone to be telling us not to "encourage" Dad to eat. He had gone from a tad over 170lbs to less than 110lbs in a little under a year and we thought that feeding him was the only way to keep him alive. We had several disucssions with the hospice staff (and they gave us some good printed material) on this subject. They were wonderful about helping us to find other things (changing his bed sheets, helping him shower, tiny spoons of ice cream, message, dipping his feet in the pool etc.)that we could do to "care" for Dad other than encouraging him to eat. The second day Dad was in the hospice home I had to take him to the surgeon's office to have staples removed and the surgeon was visibly shocked by how much wieght Dad had lost in the last couple weeks. He too "encouraged" Dad to eat as much as often as he could. On the way back to the hospice house, Dad turned to me and said, grinning ear to ear..."you know, they don't force me to eat at the hospice house. They offer but they don't force... I like it!" I smiled (holding back tears) and told him I was glad that he was enjoying his stay there and that he could have anything he wanted...he only needed to ask!! As bittersweet and short as our time in hospice was...we had some special moments there that I will always treasure. I hope that your family has the opportunity to make some wonderful and meaningful memories too! You and your family will be in my thoughts and prayers! Cindy

So sorry...may you find comfort and peace. You are so right about more than one way to beat cancer. Our loved ones no doubt fought hard and have at long last found a way to beat it! My heart aches with and for you Jen. Wishing you peace and love, Cindy

Oh how I recall how heart wrenching it was to hear these words and how amazingly unprepared I was for it. My heart breaks for your family, I wish no other family had to endure this pain. Please know that I am praying for your family - may God grant you all peace during this most difficult of times. Many of us have been where you are and we are all here anytime! (((Jen))) Praying that your Dad's transition to heaven is a peaceful one - I know it will be filled with love! May the peace be with you, Cindy

I almost posted something very similar a week or so ago but thought people would find me odd In March we went to a place in Yarnell Az called St Joesph of the Mountain (it is a stations of the cross in the desert - each station has a cross and/or a statute). While Dad was not religous from a church going perspective, he was very active in the Masonic Lodge which is bibically based so he very much believed in God, Jesus, the teachings of the Bible etc. I suppose in his own way he was very religious - he just never felt the need for to be in a church building to talk to God or feel his presence. I am Catholic so Dad thought I would really enjoy going since this was the beginning of the season of Lent. While here Dad tells me that he feels very much at peace here and that this is the only place that he has felt completely free from pain. He remarks that he truly feels the presence of God here and finds much comfort and peace in that. We took many pictures that day - some with Dad in them some without. Upon getting home and beginning to download the pictures, I notice that every picture with Dad in it has a beam of light that completely surrounds him. Upon beginning to edit a picture of Dad sitting across from a rock and near the statue of Mary holding Jesus after he is removed from the cross - I run the edit functions and look at the result ... and a face appears on the rock across from Dad - plain as day! I cannot at this point tell who the face is, just that it is a face (eyes, nose and mouth very clear at this point). I think it is my Grandmother (Dad's mom)and at this time I really think that these are all signs that someone was watching over Dad and things were going to be alright. Three days after Dad dies and the day before his memorial service, we (DH, my sister, my brother and myself) go back to Yarnell. It was where Dad had felt claimed to feel the most at peace and I really needed to go back. SM and one sister said that they could not go -- it would be too sad for them so they stayed behind. We really took our time and went through the each station on our way to the statue in the picture -- each of us secretly eager to see if the face would be visible to us on this visit. I reach the statue of Mary holding Jesus and turn to look at the rock and the face is there..but now it has a beard and is VERY much the image of my Dad! There is no longer any question in my mind, the face which previously was no very clear is now crystal clear and has very defined features, including a beard and a neck. I sit here for a long time before leaving and return twice as I certain that Dad is here and I really need to acknowledge and feel his presence. No matter where I looked at this area from I could very clearly see the face on the rock. We get home and SM ask how the trip was and if I could see the face. I tell her yes and in fact even DH could see it. She asks to look at pictures and we scan through them on the camera. We come to a picture of the risen Christ with his arms outstretched (the statue is copper and has a lot of green patina due to aging), and she says stop..can you zoom in on his face? Not understanding why... I of course zoom in ....and the face of the statute is very different in the picture than in person. The face is all white (no green at all) and is very much my Dad's face. Not his plump jolly face that we all knew prior to his becoming so ill..but his face thin, sunken cheeck face just days prior to his death. DH doesn't believe us as we begin to exclaim in surprize that Dad has given us a much needed sign that he arrived in heaven and is ok! He takes the camera and goes back to the picture and zooms in and immediately drops his $800 toy on the floor in shear shock and amazement! He often has a hard time "believing" in stuff like this but is overwhelmed by what he has just seen. I know in my heart that Dad was telling us that he was ok and with God. I find it odd and very comforting at the same time that we were there on the 3rd day after his death and he chose to the statue of the risen Christ to let us know he is ok. Makes me teary just thinking about it...

So sad to hear that many on this board seem to have less than stellar hospice experiences. We (very fortunately it seems) had a very good experience with hospice when Dad reached the point where there was no dening that he needed their services. He was in an inpatient facility and as missyk said "it was a Godsend" for our family. The amount of true caring that was provided by the entire hospice staff was positively amazing! Not to say that there were not times when I wished they could have or had done more ( I think we all wish that more could be done,especially at this point)...but overall simply amazing. I think the most important thing is to get some clear expectations from the hospice you choose. Make sure that they will be able to provide (and are able to do so in a timely manner)specific services that you find necessary for your Dad and your family in general. I pray that your family is blessed with a "god send" hospice experience and that you have some time and opportunity to make some last memories. Peace and God's blessings to you all! Cindy

I found this quote sometime ago and thought it quite appropriate: "An individual does not get cancer, a family does." ~Terry Tempest Williams I thought it was VERY appropriate and used it as an opening on a website that I created and we used to keep each other up to date during Dad's journey. I often remind Dad that he was not alone in his battle -- we (his entire family) were very much along for the ride. He was in the driver's seat but we were very much right by his side, no matter what! I too long for the days prior to his diagnosis - the old saying "ignorance is bliss" truly applies in many, many ways I suppose.....(sigh). I think the key to success and not letting cancer control your life is definately learning to "live with it". Its a hard battle - but one we all must conquer! God Bless, Cindy

So glad that your mom is home. Hopefully it is just what she needs to regain some strength and momentum for the battles ahead. Praying that the doctors will come up with a plan that will give the cancer a big WHAM and not leave Mom struggling! Cindy

Oh boy does this make my heart ache and the tears flow! I very easily could have written these very words myself less than 8 weeks ago - especially the "I just don't want my Daddy to die"! I am SO very sorry Jen that you have found this heartache. Indeed it is VERY VERY hard to see our parents suffer and cry. In fact I think it is one of the hardest things I have ever had to do!! I pray that hospice will be able to bring some strength, comfort and peace into this emotional situation for your family! This is such a hard, hard journey but each and every moment will eventually hold so mean meaning and treasure (even the painful ones believe it or not). I too will pray for a miracle for your family and strength for you Jen! Cindy

Just discovered that you can see the video on Yahoo music. Here is a link http://music.yahoo.com/ar-312923-videos--Diamond-Rio

Here are the lyrics. Don't know if you can attach a mp3 or not but if anyone wants to hear it and you don't have access to it..PM me. It is an awesome song. Its on the Greatest Hits, Volume 2 CD along with God Only Cries for the Living. You place your hand on His Bible, when you swear to tell the Truth His name is on our greatest Monuments, and all our money too, And when we Pledge allegiance, there's no doubt where we stand, There is no separation, we're one Nation under Him. Chorus: In God We Still Trust Here in America He's the one we turn to every time The goin' gets rough He is the source of all our Strength The One who watches over us Here in America In God We Still Trust Now there are those among us, who want to push Him out, And erase His name from everything, this country's all about, From the Schoolhouse to the Courthouse, they're Silencing His Word, Now it's time for all Believers, to make our Voices heard. In God We Still Trust, Here in America He's the one we turn to every time The goin' gets rough He is the source of all our Strength The One who watches over us Here in America In God We Still Trust Here in America Here in America Here in America, In God We Still Trust Here in America, In God We Still Trust Here in America

Just terrible news.. I cannot imagine how devistated you must be. Your sister IS definately in place where she is free from pain and all the limitations that cancer placed on her life. And I for one MUST believe that this freedom alone makes it a "better place". May God help you to find peace and comfort during the difficult and emotional days ahead. Cindy

No advice ...just wanted to send you a message to say that you are not alone. We do understand...missing our loved ones is something I think we all struggle with EVERYDAY. Wish there were "magical" answers for all of us! Wishing you peace, Cindy

(((Lori))).....sorry no words of advice. Thinking of your family and wishing you days filled with love, laughter and PEACE!!! You are in my thoughts and prayers, Cindy

WOO HOO!!! Wonderful news Kim. May God continue to bless your family with NED forever! Cindy

A boss wondered why one of his most valued employees had not phoned in sick one day. Having an urgent problem with one of the main computers, he dialed the employee's home phone number and was greeted with a child's whisper. "Hello." "Is your daddy home?" he asked. "Yes," whispered the small voice. "May I talk with him?" The child whispered, "No." Surprised and wanting to talk with an adult, the boss asked, "Is your Mommy there?" "Yes." "May I talk with her?" Again the small voice whispered, "No." Hoping there was somebody with whom he could leave a message, the boss asked, "Is anybody else there?" Yes," whispered the child, "a policeman" Wondering what a cop would be doing at his employee's home, the boss asked, "May I speak with the policeman?" "No, he's busy", whispered the child. "Busy doing what?" "Talking to Daddy and Mommy and the Fireman," came the whispered answer. Growing more worried as he heard what sounded like a helicopter through the earpiece on the phone, the boss asked, "What is that noise?" "A helicopter" answered the whispering voice. "What is going on there?" demanded the boss, now truly apprehensive. Again, whispering, the child answered, "The search team just landed the helicopter." Alarmed, concerned and a little frustrated the boss asked, "What are they searching for?" Still whispering, the young voice replied with a muffled giggle: "ME."

Many, many hugs to you! It is so very, very hard. Wishing you peace and comfort today and everyday. Cindy

LOVE IT!!!

Jen, This is such a hard place to suddenly find yourself. I know that God will indeed help you to find the right path for your Dad and your family. I hope that things work out with him getting Tarceva and that it does give you more time. Though there will be many very emotionally trying times ahead, try to cherish this time with your Dad for it will be worth more than words could ever describe. Your family is in my thoughts and prayers! May God keep and bless you all!! Cindy