Wow! That's a lot going on. Sometimes I just wanted to go outside and scream at the top of my lungs!! Her pain is coming from the tumors and the swollen lymph nodes would be my guess. Jeff complained of his right side constantly, which is where all the liver tumors were and then his left rib area because of the cancer that was in that rib bone. He could hardly stand to lie flat because it just caused him to hurt worse. On his scans it would show the adrenal gland tumor had shrunk a little but the liver would new ones and the previous one and grown too and on and on. This pain is NOT in her head, give me a break. Geesh, they should trade places with her and feel what she feels. Even though Jeff had his eyes closed I would still just try and feed him applesauce or pudding or even just ice chips (which he liked a lot). He would open his mouth and usually take a few bites for me. Figured it was better than nothing. I wish there was more I could do to help you, I feel so bad for what you are going through.
This is the hardest thing I think I have ever endured since the passing of my own Mother 7 yrs ago. She died from a brain aneurysm at he age of 80, 9 mos after a mastectomy because of breast cancer.
I really hope things start to turn around after she starts the immunotherapy. They told us it usually takes a couple treatments before they start to see if it's working or not. Let's pray it works!!!
We got the results and the tumors grew "mildly" as they put it. Originally they doubled in size in 10 days so I was nervous about the results. Two of them grew larger, two stayed the same. And she has some swollen lymph nodes in the abdomen and one on top of the blood supply to the colon. She's been complaining of pain since her surgery and they said it was normal...at one point they wanted us to think it was mental. Or that she had some sort of a mental block. Or that she was so used to pain meds, her body was still under the impression she had pain. Just makes me so mad that they didn't do more sooner. I know it wouldn't have changed the outcome but her pain levels have weakened her more and didn't allow her to focus on physical therapy. Pain meds make her tired and she sleeps a ton. So that means she misses meals, physical therapy, etc. I wrote a letter to her doctor and it was kind and respectful, but to the point. He called and expressed his sincere apology. I think he feels bad about what is happening and has happened. Nothing about her case has been normal. The fistula really threw all of us for a curve, which really started her decline. Then the surgery, another hit. Now more tumors. She tried to walk with the walker last night to the hospital door and no luck. She has zero stamina. She isn't constipated either...she has the opposite problem and doesn't even feel it coming. It can be humiliating for her. Just a waiting game now...her white blood count keeps rising, even on antibiotics. They say it can be the tumors....and since she shows no sign of infection (fevers, etc), they aren't sure what to do. Today I feel like I could just yell at anyone and everyone for no reason at all. I'm trying to keep that in check.
I think any pain meds they put her on will make her that way unfortunately. It's the only way to control the intense pain she is experiencing. Jeff, my husband, was tried on morphine but vomited continuously on that so they switched him to a Fentanyl patch which they had to keep increasing almost weekly til finally when in the hospital they decided to switch him to the delaudid. All of them made him severely constipated on top of everything else. Just a constant battle. I hope you will get some word on the scan results. Can' t believe it is taking so long. Keep me posted.
I don't know that my dad can help a lot at home...he isn't very strong and on top of bladder cancer, has COPD. So he would need lots of help. I've thought about taking FMLA and helping but wanted to save that for end days. Rehab is probably our best option. She is on morphine and makes her tired. She was on the meds your husband was but it wasn't helping the pain levels. I just wish she didn't have to be on that ...makes her so tired and not interested in much. Still waiting on scan results...ugh.
I will pray for good results on scan and that she begins to improve. It's a very slow process. Nothing seems to move at the speed we want it to. Give the Keytruda time. My husband had I think 5 rounds before he stopped. They did his every 3 weeks. I know how tough this is and telling you to stay positive is hard. If it's not possible to get her home without some kind of home healthcare then rehab probably is the right thing to do. If she is like my Mother she won't be happy about it but have to do what's best and hopefully temporary. Feel free to vent, it's good to get it off your chest. Keep your chin up!!
Thank you again. It all makes sense. I am so sorry you had to go through all of this. It's heartbreaking. I have no new updates on my end...waiting for them to tell me the scan results from yesterday. I think it's a waiting game at this point. And I hate waiting but I know that will be my reality now. I am trying to stay positive but today I feel sad and hopeless. I hate that she isn't able to walk without assistance or be at home with us now. I hate that she has to go to rehab to maybe get better. I hate all the unknowns. I'm venting now. I'm sorry.