Remaining hopeful during difficult times
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dear danielle,
i cannot tell you how heavy my heart feels for your husband and you, after reading your post i felt like there has to be something, anything, that we could do to help. i hate this feeling of being helpless(we all do) it makes me want to scream, but all we can do is sit back and listen to what the medical world is telling us. you are a strong women and your husband knows that you are doing your very best for him, keep positive and going forward. this is a hell of a road we travel there are many ups and downs so im praying that this is just a set back and that just around the corner there is good news for you and your husband. so i send nothing but good wishes and lots of prayers out to you and your husband………..ron
Dear friends,
Thanks so much again, this site is such a comfort to me. It’s 400am, I am at the hospital and can’t sleep. Mamy of the doctors/social workers are telling us Jim can be discharged, “rehab is possible”, “go home” (very nicely) while the nurses won’t even let him stand to move from the bed to the comode because his heart and respiratory functions are so weak. They are telling me to get home health but I don’t know how I can manage when he can’t even sit up in bed on his own (and he can’t lie flat). As background we have family in Tucson but actually live in Australia. The Mayo team wanted us to go back to Aus but explicitly stated that a commerical flight would kill him and to medievac him (at a cost of 300,000 USD, a cost our insurance won’t bear as it is humanitarian repatriation as opposed to a transfer stemming from a need for urgent medical care). i don’t think i can ask our family (my family, his inlaws) to completely remodel their house (i.e. wheel chair lifts).I don’t know what to do. He is so sick. He doesn’t understand (and neither do the family or myself…) whether he is dying or just had a horrible setback. All of his family from Australia is here now and everyone is looking to me for leadership. Of course I know that CC will eventually take him but I don’t know if this is a few weeks or a few months or longer…He is usually astute to his body’s messages but he is also uncertain.
I think our the only feasible option in the short term is to go to a care facility focused upon rehab as I don’t think I can bring him to a palliative care institution when some doctors are still telling us rehab.
It feels like the storm I wrote about last week has passed. The doctors had told me that he had been going down quickly but now he is doing much better. His blood is normal, infection controlled (gone), his fevers are gone and is heartbeat is much reduced (almost normal). However, he is draining approx 600 from his chest cavity each day (has a lung catheter) and as i said above he is bedridden (and dear God in heaven he has bed sores which hurt me so much my stomach bleed).
I am genuinely happy that so many of you are doing so well and I hope it continues. Nonetheless, it breaks my heart that my husband whose CC was sufficiently “non-progressed” (not sure if that’s a word) to be listed for transplant in March is now to sick for chemo.
My apologies for the long winded vent…my heart is breaking for this beautiful, decent man who is suffering so much.
Danielle
Dear Danielle, I have been reading your posts here and am inspired by your positive energy and optimism. You’re a reminder of the value of holding onto goals, faith, and the belief in miracles, even in the face of fear. Keep snuggling close to your hubby and know that you continue to be in our hearts and prayers.
Tess
I am sorry to hear the ‘new’ news about your husband. It sounds like you have a nice team of people working with him- amazing what a huge difference that makes. My dad is finally in a really nice hospital and everyone seems sweet and caring (as opposed to the last hospital he was in where you got a bad feeling just driving up to the place and hardly anybody smiled). You both are in my thoughts and prayers.
Danielle,
I am glad things are looking up. Hans squishes in my bed when I am in the hospital too. It does make things better just to be so close.Still sending you warm thoughts and prayers.
Kris
My dear friends,
Thank you so much for the continued love and prayers. YES, we did have a better day. Your energy, prayers and angels reached us today. Thank you.
Today, the team drained his ascites (?) and also took 900 ccs from the chest cavity (another pleural effusion). Now…this is a good thing. Last week’s pleural effusion left him intubated and in horrible shape. The infection is under control. Spirits are down but we’re regrouping and gearing up for the next fight.
The ICU team are fantastic: not only do they let me sleep in the room every night, last night no one batted an eye when I slept squashed up in Jim’s bed!!! He slept like a baby with improved breathing and heart function. One of the doctors brought him Hagan Das…family, friends giving us love and support.
I wish all of you a good day tomorrow. I send you strength and peace.
With love,
DanielleDanielle,
More positive thoughts and prayers coming for you both. I hope you both have a better day today.
Best wishes
Gavin
Danielle,
I’ve continued to pray for you and Jim. I am sending prayers and good thoughts your way. Don’t forget to take care of yourself during ths time also. Make sure you are getting somthing to eat to keep up your strength. Keep us posted on Jim and you both will be in my prayers. God Bless,
JamiePeace, strength, and healing for you and for Jim – prayers are going straight up. I believe in angels, and felt them hold my husband and I up when we needed their help most – I pray they will be with you and surround you both.
Joyce C.
Danielle,
Warm thoughts and good wishes for a better day. Sometimes I feel like Scarlett O’Hara with this cancer because in my head I say “I will think about that tommorrow. After all tommorrow is another day” Silly I know, but with this cancer, sometimes you just have to accept crap days knowing the next one can be better.Kris
Dear Friends,
Thank you so much from both of us for your love, prayers, thoughts and positive energy!! It warms the heart and provides fuel for healing. We received some more bad news today (lots of complications, bleeding, gushing wounds, more clots and other difficulties) and actually had a bit of a crap day. It’s 930pm and he’s only now returned to the room after a CT scan…Nonetheless, life is still good. Thank God our kids (in Australia right now…) are en route to Phoenix and we are full of hope, peace and feel surrounded by love. It’s good. Deep breath. Peace within and we’ll tackle tomorrow with a vengenance. Watch out cc.
With love and prayers to all of you,
Danielle and Jim
Danielle,
My thoughts and prayers are with you both. Read my signature line and then continue to live it!
Much love, hugs and prayers.
PamDanielle,
I am sending my most postive thoughts, warm wishes and prayers to you. Listen to the doctors, but only to prove them wrong. Concentrate on your family and getting things in order, but only as a precaution…As I like to say, nobody has an expiration date stamped on their foot.I was in the hospital for a week..infections, hooked up to food and fluids and now I am out and doing well. The body just sometimes needs extra attention.
Thinking of you,
Kris
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