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JustMe

Just checking in...

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I hope everyone had a nice, peaceful Thanksgiving. Ours was quiet and nice.  A dear friend of ours brought up the turkey and all the fixings to our house.

Husband is okay overall, not too many side effects from the trial.  He's had ongoing issues with pain in his belly, needing senecot type remedies.  He sleeps all the time.  Two large nodes are painful. And an old back injury has been bothering him again.  MRI on spine was clear. 

Was worried about weight loss, still am, but he gained a couple pounds at last appointment.  Lots of smoothies and milk shakes.  In May he was 198, now 169...was down to 164.   

I'm worried about my own health too, nothing serious, but I don't take care of myself at all and I know I need to get my act together and change some habits.  I work full time...tired a lot, worry too much sometimes...

Next treatment is Wednesday.

Trying to get ready for Christmas...it's fun with our 11 year old daughter and two grandbabies, ages 1 and 2...

I hope everyone and their loved ones are doing okay at the moment.

 

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Updating again.

Things haven't been going well.  He was hospitalized twice in December...malignant pleural and pericardial effusions.  He has bilateral pleurex catheters for drainage.  Visiting nurse comes daily to drain him.

In the meantime, his oncologist at Dana-Farber decided to move up his scans, she's very concerned about the fluid...the fact that it's malignant and how quickly it builds back up after drainage.

New scans showed 16.5% growth since the scans in November...but the cut off for the trial is 20%...so they gave my husband the option of having another dose of treatment...which he did and was grateful for. 

We have also discussed hospice with our team...if treatment does kick in...it has to be fast...prognosis is "certainly not years...months, possibly weeks" and "It is very, very, very important that friends and family spend time with him, now."

Also, atrial fibrillation, which he now takes meds for...

Very little appetite, sleeps all the time...we have a hospital bed at home now as well as oxygen.

:( 

 

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I'm so sorry, JM,

This has to be so difficult for you both.  Please do your best to remember to take care of you, too.  I've heard wonderful things about hospice, when that becomes appropriate.  

Just sending hugs and positive vibes.

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