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An update

Ruthmomto4's picture
Ruthmomto4
Posts: 683
Joined: May 2013

My husband started a probiotic which strangley enough has made a huge difference in his constant time in the bathroom. He was even able to leave the house a bit. His appetite is fabulous he is eating his goal of 2800-3000 calories a day. It doesn't seem he is gaining any weight at all though. That's very concerning. His blood work all looked good except his alkaline Phosphatase which is so high the dr thought it was a mistake. She had him do it today but it went up 60 more points, but no one bothered to call. Not sure why it's so incredibly high but all other numbers are in range. They put a bigger tube in his drain and it's only internal now i am worried it's that. he does have a phone consult with interventional radiology monday. Honestly I find them all useless and I am so angry with the gastroenterology department I am considering a malpractice attorney. They claim to have put in stents that can't be removed and those are the ones causing his issues. The problem is most hospitals are tied to Yale and other than Sloan we don't know where to go. When he gets sick he gets very sick and getting 60-90 min to nyc is not convienient. It's all very frustrating. I think he knows his time is getting closer but I am not giving up until I have to and neither is he. We argue a lot because I must ask how he is a million times a day. Yesterday he did not have a good day a lot of bathroom problems and he thought he was going back to the way he was before. It wasn't a good day here at all, but then today he was better. It still presents like a pancreas problem and I know they screwed something up but they won't admit it but by doing that they won't help him either. I am just so very worried all the time and tired. Funny my homeschooling my autistic son daily is the brightest spot in my life. Google meets with 5 special needs boys is the best. They are so funny, excited, and happy to see each other. it brings me a lot of happiness, I know it's hard for some but I love it. Anyway thank you everyone for all your kind words and prayers it means a lot to me.

abita's picture
abita
Posts: 978
Joined: Dec 2017

There is a MSK in Westchester. Is that close enough to y'all? 

I am so sorry for y'all. Bad health is a horrible thing to deal with, and not knowing what is going on must make it multiple times worse.

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Other people have talked about going there when they feel that there is no option, or no one is helping them.  Try calling up Cancer Treatment Center of America and see if they are willing to take him.  They claim to have same day appointments, or next day.  I'm sorry your husband is going through all this.  They might be able to see exactly what mistakes or changes they could make to his previous surgeries as well. 

Kim

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

It all sounds like a horror story. 

I am glad that you find some joy with the homeschooling. You need to take the joy where you can find it. 

And, you've got to know that arguing with hubs at this time, just adds to the stress. Set a goal to only ask him a certain number of times, or only if he is showing distress in some way.  At least this is one thing that you DO have control over, so do it. 

You're in my thoughts and as always, sending the best of them your way. 

Tru

 

Ruthmomto4's picture
Ruthmomto4
Posts: 683
Joined: May 2013

MSK is 45 min away without traffic, which is fine for appointments that us where he went for his oncology appointments.. However, when you are a patient of MSK when you get sick the only place to go is the main one in the city. CTC the closest is Philadelphia, so again when he gets sick it an almost 2 hr drive. 

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

I started in NYC when I was diagnosed.

When MSK Westchester opened up, I moved there.  Had chemo there.  Had my port put in there.  Went there for an emergency (kidney stone) when it flaired up. They have opened a mini-ER that will eventually be 24/7.  I have not checked since the summer of 2019 about the hours - then it was something like 8AM to midnight.  At the time they did a CT scan of my abdoman, read results within 45 minutes, gave me morphine when I went in even before that scan etc.  I have also had two biopsies there.  

Once I transferred outside the City, I have only been back to meet with an nutritionist.  Everything else has been in Westchester or Bergan.  I would guess surgeries and certain other procedures would be in NYC.  And it may be a situation where your husband's case would otherwise require the city (sounds like it?) but figured I would let you know my experience.

 

 

Ruthmomto4's picture
Ruthmomto4
Posts: 683
Joined: May 2013

When he gets really sick he has to be admitted and that's only at what they call urgent care. It's in the city, I think it's connected to the main hospital. they would transfer him very easily through there to the main hospital. He has had scans done at Westchester but when he got sick while there he had to come home so I could get him into the city. 

syed244
Posts: 1
Joined: Feb 2021

This was very helpful

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

The website mentions urgent care in the city. But (and I could be wrong) I think that is what they called where I went in Westchester.  Thought the result would wind up being the same.  If he has to be admitted, it will in all likelihood be in the city.  Worth checking out though for future reference in case it helps at all.  I spoke with my doctor the other day and not scheduled to speak/go for a bit.  I can ask.  (I need to speak to someone else Weds, I can ask them.)  

If there is anything else I can think of, I will let you know.  (Sounds like you do not like Yale?  I may be going for a trial there.)

Thoughts with you and your family.  

Ruthmomto4's picture
Ruthmomto4
Posts: 683
Joined: May 2013

In the endoscopy/gastroenterology center. At first they were amazing, then they became impossible to get in touch with and they just had zero follow up. at one point they screwed up a stent which allowed his billirubin to rise to over 17 (1.2 is the highest it should ever get before they finally acted. He was horribly sick. However his oncologist is very nice, knows her stuff but is very overworked. I do like her though, and if your trial is trough oncology you will be happy. If you went to Sloan waiting 2-3 hours for the doctor to come in shouldn't shock you lol I hope the trial can help you and if I can help in any way with getting around or anything like that, please no matter what I am going through do not hestitste to ask. I have lived here my whole life I woukd be happy to help!!

 

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

I aprreciate it. Also thank you for the information.  The person I am dealing with up there (once I got through the things to be part of it) has been great.  But they are research/oncology.  He has been keeping in touch with me, calling every 6-8 weeks to see the status of my scans, how chemo is going.  Even has done it on the weekends.  It really is disappointing to hear about what you have been through.  That is crazy about the count being that high.

Sloan in the city had a tendency to be backed up a bit more.  Most of the time it was not too bad.  But a couple of times i almost left.  It is not that chemotherapy is THAT much fun that I will wait for hours Foot in Mouth   Outside the City there have been only a couple of bad days with long waits.  I have been lucky that way.  Sounds like you know your way around MSK.  But if there is anyting I can answer or help with from my end, please let me know.   You can also message me through the board if it is something you do not want to post.

 

 

abita's picture
abita
Posts: 978
Joined: Dec 2017

The waits at the E53rd St MSK location is getting so long. There was a couple months, where just waiting for vitals was 90 minutes. I usually start crying because it ends up being that I would leave, but I can't because it is chemo, and it just is so frustrating.

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

When I was in the city. Most of my FOLFOX was done at 53rd street.

 It seems to also have gotten a bit worse with Covid.  There was a couple of times four or five hours in the city.  My wife drives me to chemo, and she convinced me to stay the couple of times I wanted to leave.  Happened at Westchester also.  I do not recall what I was told, but there were things going on that kept on escalating and backing things up.  And this was with having an iPad to keep myself occupied.

abrub's picture
abrub
Posts: 2153
Joined: Mar 2010

Waits at 53rd St, whether for my dr or for chemo were always long, commonly hours long.  It's just a matter of dealing with it, and knowing that ultimately, you are getting superb care.  At least the waiting areas are pleasant.  You can also go off, and they'll phone your cell to come back if you want to wander (in a pre-pandemic world!)

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

The website mentions urgent care in the city. But (and I could be wrong) I think that is what they called where I went in Westchester.  Thought the result would wind up being the same.  If he has to be admitted, it will in all likelihood be in the city.  Worth checking out though for future reference in case it helps at all.  I spoke with my doctor the other day and not scheduled to speak/go for a bit.  I can ask.  (I need to speak to someone else Weds, I can ask them.)  

If there is anything else I can think of, I will let you know.  (Sounds like you do not like Yale?  I may be going for a trial there.)

Thoughts with you and your family.  

Canadian Sandy's picture
Canadian Sandy
Posts: 689
Joined: Jul 2016

Your in my thoughts Ruth. I hope your hubby can get some relief. Prayers For you both.

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