Posted 8/15/2014 2:24 PM (GMT -5)
Ms. WW:
Thank you for the excellent suggestion. Krissy posted this on one of Purg's threads and it's a good idea to include it here. Krissy we are praying for you and Paul.
Jim
Hi Purgatory, I am just back from seeing Paul at the hospital and I am reading this and it sounds so much what may be happening to Paul too. Its scary to see.... He seems to be slowly getting worse... despite them doing all they can and at the same time insisting that all looks good... I know in my heart, and in my eyes that things aren't good with him...
I had to return to work yesterday as the bills need to be paid somehow. It kills me, but at same time a diversion and I truly love my job so much and the people I work with are great. BUT.... I get crappy calls like today (more on that later).
I have had to advocate and fight for a lot with Paul on this as so much has gone wrong, been missed, overlooked, etc. I feel sometimes maybe I am just being paranoid that they are missing things and its all good and well but then I KNOW that is not the case. I talk to other docs every day, I fill them in, get their input etc. Something is so wrong still but we don't know what.
You see- Paul is just deteriorating before our eyes. Instead of improving he now has severe nausea, his pain is worse and comes on faster and stronger than every before. Through this whole thing he has never had nausea at all, except in the last week- and keeps getting worse..... And his weakness and strength are being sucked right out of him. Even in bad shape right out of ICU he was walking at least 4 times a day all over the hospital, Now he needs a wheelchair to get off the hall he is on. He said yesterday he went downstairs to have a smoke (in the wheelchair mind you), and had to stop at least three times to take a long break just to get back to his room! this same walk he could do with ease several times a day even a week ago.....
He hasn't eaten. They have him on TPN. IV nutrition and have upped his intake (more than double now) to something like over 190 grans of protein a day among the other lipids, vitamins, etc.. yet he gains no weight, gains no strength, its not helping much.
He can't eat much- so far he has had a pudding cup yesterday he said he had to force down. A few days ago he had a few bites of Jello.... Today he ate a pack of Reeses which seemed to me like a HUGE feat- what a victory for something so trivial, eh??
I spoke with the nutritionist late last week about his intake, etc as they assumed he would be eating more now (He says he has to force himself to eat and he gets so nauseated, hates the taste of everything and has diarrhea, too).... Well we discussed the protein drinks. Apparently there are others like Boost that are prescription- ones that are non dairy and suitable for a clear liquid diet, as well as others with a much higher protein content than Boost has and supposedly more tolerable and easier to digest. WE discussed he would need this soon due to the cancer, the healing, the wasting, etc.... But this was before his decline since then.
His decline is strange- his vitals are good save for some high BP readings when his pain and nausea is really bad (he says its nearly constantly intolerable). His labs seem okay- some things are out of range but not by much to be concerned and some expected given condition, meds, etc. would be normal in this case. His infection is clearing with the antibiotics, his wound is healing slowly but as expected. All looks good. EXCEPT his intractable nausea, weakness and fatigue and his pain- all getting worse and worse as the days go by.
I mention all this because it seems to be where you are, or where you were, or where you are heading. Paul still has a lot of pounds to go on his big frame but his face is gaunt. Not to disrespect anyone but the way he can't tolerate foods after a month without and all this surgery and invasion (and still a partial blockage!) I halfheatedly compared him to a person liberated from a concentration camp or starving- they hadn't had food in so long they no longer can digest or tolerate it anymore..... I think now my offhanded remark may be more on the money than I realized at the time.....
The call I got today- the case manager. Telling me that even though I needed to return to work and had, that maybe I want to rethink this decision. She said that Paul may be as good as he is getting and that maybe this is the end, and that things would just go fast from here, and I needed to prepare as it could go very very fast from here on out. I was so shocked I am still processing what she said... I think I didn't understand until reading this thread and your other that was closed that this may be the same thing.....
Seems to me that it starts to snowball and comes to a point where it can't be stopped or to a point of no return. They think Paul may be there.... Not really sure yet but saying I need to be prepared and him and I need to start having some conversations and that maybe in hospital palliative care team (hospice) should be involved... There was more to this conversation but we will have another tomorrow....Not looking forward to it..... I HAVE to work- rent is coming due- my daughter may have to drop out of college because we can't pay the last semester bills which just consist of her taking her semester teaching practicum at a local school.... She already walked the ceremony in May and this is all she needs for her Bachelors (and was beginning her Masters). So yeah, I can't take off any more time as it is unpaid. My job would be secure, but my home and car and everything else wouldn't be.... Its killing me....
But hey, back on track.... Please please please don't wait until this gets to the point of no return. Don't hesitate. Pester for those lab results NOW... as soon as they come back you should have them.... See if they can get you on some of this liquid nutrition high protein stuff that is different than Boost.... Do all you can....
Jeez, I have gone and wrote a novel now. Sorry for all who have stuck through it and for those that it put to sleep, I am glad I could be of help in that, too!
Purgatory- you take care. Fight. Look into this. Talk to me.... I think you can understand what I am saying and how I am feeling as his wife....Let's get through this together- you, Paul and me.... Please?
kukukajoo
Paul's 2014:
PSA 4/4 484.61 5/27 115.07
BX 5/8- 12/13 cores nearly 100% 3+4 & 4+4 PNI
CT abd/pelvis: 5/28- several lymph nodes and innumerable nodules in both lungs
Bone scan 5/27- no mets
CT Chest 5/29- innumerable mets both lungs
Bostwick adds 5% pattern 5 in all samples
Stage T2cN1M1c
lymph mets neck, other
Late June Lupron depot 3 month with 2 wks casodex
7/3 Taxotere began w/ decadron