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My husband just spent 6 days in the hospital

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

again from those stupid biliary stents. However it does seem that there are no tumors in his bile ducts and the big one did get zapped by the radiation. Not 100% sure on this yet. however further up in his bile ducts is a narrowing called primary sclerosing Cholangitis. it’s not a good thing and the hai pump he has is known to do this, but it seems awfully quick. No matter what he has to stop using it we can’t take a chance for anymore damage in there. The stent Sloan placed 3 weeks ago was not in the right place and became horribly infected, he had pus in his ducts and his liver. He is on antibiotics still and will be for a while longer. It took two ERCP procedures to finally get it right, and we are hoping his numbers come down. His bilirubin has only dropped .5 he is terribly jaundiced right now. He did not go to Sloan he went here to Yale he was too sick to get there.  He isn’t eating well and we have already had two major screaming fights about it. 

We are dealing with a few medical issues our Autistic son had a grand mal seizure 3 weeks ago today, nothing has ever terrified me so much. never had one before and we are still waiting for our appointment with the neurologist, it’s in March. He can’t ever be left alone now ever, not that I really did but even a quick trip up to the store is out of the question. Also his kidney stone lithotripsy in December worked but the fragnents formed into a smaller stone so we have to do it again. Thankfully he said we can wait a bit. 

I am tired, sad, and scared out of my mind all the time. It seems everyone is just ticking clock waiting to go off with issues my husbands just took him down and he was septic in hours. This is no way to live life, i miss our  life. It’s 9 years in March since he was diagnosed at stage 3, 5 years since stage 4  and the last 3 have been hell. I am happy though he won’t be going back to Sloan I loved the oncologist at Yale and without the pump in the picture he will go back to her. The hour to the oncologist in westchester, the 6 hours it took to get through an appointment INFURIATED me, and she always had to ask someone else what to do. I refer to her as dr useless. On the other hand I adored the surgeon, his team, and the radiologist and his team. I am not bashing Sloan just was not impressed with the oncology portion is all.

 

Butt's picture
Butt
Posts: 299
Joined: May 2018

It is exactly what many people who are diagnosed with advanced cancer and specifically stage 4 don t get. It is one problem after another when you don t know what the next one will be and when. They just don t get it. I suggest to talk with another doc who does pumps. Butt with the pump.

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

it annoys the crap out of him, and he can’t ever have chemo put in it again, period. There is no maybe on this he cant use it because of his liver damage.

he currently has no cancer in his liver, not even microscopic it was resected and it seems to be gone his CEA is 2.0 and it is a good indicator for him.

Kazenmax's picture
Kazenmax
Posts: 350
Joined: Feb 2016

I don’t hink theres anything more stressful than watching helplessly while your loved ones are ill. You have really been through it. I hope things settled down for you soon. Spring is coming. Maybe a change in season will lift you. Take care.

k

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

its so nice to ”see” you!!! What a lovely picture!

thank you for your well wishes!

Christy76's picture
Christy76
Posts: 27
Joined: Feb 2019

The fact that you can deal with both your son's seizure and your husbands cancer proves you are strong person and I'm sure your husband and son appreiciate that. I admire your ability to cope in this situation. Please try to set some time aside to rest if you can though. You don't want to get worn out and you deserve some R and R too.

Christy

Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

Thank you, I am not that strong lately but I appreciate your kindness.

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Leave us feeling overwhelmed and so deeply hurt, it clouds everything. It makes for the longest of days and even longer nights. Since Harley's death it's been difficult for me to write or express myself at all, especially to those like you who I love and admire. Usually when words fail me I can fall back on my natural gift, you guessed it - my infamous,  always in demand "Semi nude interpretive dance" but just the thought of squeezing into my leotard with selective cut outs feels like too much of an effort - not to mention I don't exactly see you coughing up the cash.

So settle for this: you're a strong woman with a heart as huge and deep as the sea. You carry a lot, more than you let on. But as always, despite your own struggle you never hold back when it comes to comforting others. You're that rare breed who does things , beautiful and wonderful things like bringing Abby into your life when it couldn't be less convenient because you know love is never convenient nor is it effortless, there's always sacrifice, it breaks us, we mend and we continue on. I have no doubt these difficult times will fade and that you'll catch the wave of the next good moment and ride it all the way to shore. More hard times, more pain, more love - we repeat this cycle because we're human, I think it's how the best of us are wired. I wish you both all the joyful times yet to be had. It's my hope peace can fill your hearts with the gentle calm you both so deserve, you're in my thoughts.  Peter  
Ruthmomto4's picture
Ruthmomto4
Posts: 636
Joined: May 2013

Peter, you are just the kindest person. I hate that cancer brought you here, but I am happy you are here and you are ok.. My poor little Abby is also not feeling well with a second bladder infection in her short 11 weeks of life, off to the vet today. I hope you are having a good day today and you are finding a small bit of peace with Harley be8ng gone.

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

They sure are hell when you are going thru them tho'. Bless your soul. As the caregiver for both your son and husband, the mental and physical drain can build up with no where to go. I hope you have someone or somewhere to vent to. This board is priceless. As the caregiver for my husband, I have felt those emotions that are tumbling around in your head and heart. You are human so allow yourself to be. Your husband and child both know now, and have known the unstoppable love and drive you have to help and protect them. You can only do what you can do. I had days where I wanted to cuss out every doctor that would walk thru the hospital door..some days I did. Make sure you take care of at least the basics for yourself. People told me to take advantage of the offers for help from others. I know what it's like to want to but then let guilt tell you that it is once less moment you have. My heart aches for you because I have been where you are but I didn't have a child to care for as well. From what you have posted, you have great love and strength that I pray will get you thru those hardest days and moments. The pain of watching others you love suffer and not being able to fix it all is a pain I wouldn't wish on my worst enemy. Just know that you will get thru this ..You were given this journey because you have the strength and will to keep putting one foot in front of the other for yourself and them.  I will keep you in my prayers and thoughts hoping that the loads you are carrying do not drag you under...much love and huge hug...

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

Your family has been through so much with not only your husband but your child too.  I'm hoping that your husband gets some relief from all he's been going through along with your son.  It's too bad you couldn't get an earlier appointment for him.  You are in my thoughts and prayers.

Kim

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

Ruth,

I wish our little online community all lived in the same city.  It would be nice to be able to physically help one another.  Do you have family near by?  You are so strong and doing a great job caring for your family.  Make sure to care for yourself also.

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Diane's right that proximity would help alot, sometimes a hug would be worth more than pages of words, but it is what it is. In 2015 I was in " the eye of the storm" most of the year, and the trauma of all of it [legal, and work issues to boot] left me both wounded and numb. It is no way to live, but it subsides or we adapt, or both. Hang in there and treat yourself when and where you can.......................................................Dave

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