Lobular Sucks!
Comments
-
Thinking of you SP!! We are all with you and holding you tight. Your perseverance is AWESOME!!
Lobular does SUCK.
Heather
0 -
Hello, my super duper supportive friends! I'm finally back to update. I was really at the end of my rope yesterday and feeling so trapped by the hospital and its system. What is it called when they keep you in a room and give you no food or water, ask you lots of questions, wake you up at will, and sometimes hurt you? And chain you to something you have to lug around?
To sum up the last four days at the hospital: I went in because of three days of vomiting and being unable to drink much at all. I knew I needed fluids and electrolytes. They did all the usual ER tests and an x-ray and CT. My right kidney was very large with poor function, from cancer in the peritoneum or retroperitoneum pressing on the ureter. We talked about a stent, but given the overarching goal of getting me on systemic treatment, we chose nephrostomy (tube and bag leading out of my back, yuck and not fun) as it was most likely to succeed. It is odd that a gastro problem sent me in, but the CT scan saw the hydronephrosis. One gastro doc today said something I had been thinking, that maybe the large kidney had been pressing on intestine.
Yesterday they did a fluoroscopy upper GI scan with me on a tilt table (difficult with the pain from the new nephrostomy) and found no GI blockage. After the test that day they kept me NPO (no food or drink) with no reason or explanation despite my pleas, and I was very unhappy about it. The vomiting had stopped well before that.
Today an endoscopy was proposed, but my onc intervened and pointed out that getting me eating and discharged so I could start treatment was more important than to keep investigating. Maybe there is some more ILC pressing on my stomach or small intestine but I agree with my onc. She also said today that I could resume eating and drinking, beginning with clear liquids.
I had to get very assertive to get my food and drink. Eventually I went to the nurse's station and firmly described how my needs and my oncologist's decisions were being ignored, and I asked for the charge nurse or to page the hospital doctor. My hospital nurse wanted communication from a doctor or NP who could actually change my order. I was not willing to keep hearing "I will ask" and then having her skip away. So when she came to my room about ten minutes later, I made her message every one of the people who had the power, and I made a phone call on speaker in her presence leaving a message for my onc's NP. Shortly after that, which was three hours after my onc said to let me eat and drink, the nurse heard personally from my onc. (The nurse would not accept the email my onc had sent me.) People were busy with holiday parties here at the cancer center today. Lucky them!
I finally got the best popsicles ever. Also broth and green tea. I had been fantasizing about this during four days of starving.
Friday I start the immune checkpoint inhibitor pembrolizumab/Keytruda. The tumor genomics board, looking at my 2019 tests, said the high TMB (tumor mutational burden) warranted it. We still do not have 2021 genomic test results. I did come across a poster about ILC that says "ICPI [immune checkpoint inhibitor] biomarkers [are seen with] highest frequency in gastrointestinal mets."
I've had fluids, electrolytes, TPN (nutrition through IV) antibiotics (remember the port infection?), a blood transfusion because of low iron, IV acetaminophen for pain from the nephrostomy. I have had my vital signs taken a zillion times, never allowed to sleep more than six hours max. Port needle completely changed. Awkward showers. Etc. Well, if you have been in the hospital, you know. I have one more day here it seems. Please send beautiful seasonal or Christmas photos if you are so inclined!
And thank you for looking in on me!
0 -
oh, ShetlandPony, that all sounds just miserable. What the hell is wrong with the nurses? I was thinking about you all day yesterday. Thank you for the update. Man, I hope you can leave soon. The poking and prodding and not getting normal sleep has got to be wearing you so thin. I probably would have been screaming to give me some F’ing food. I hope it gets better and they release you soon. Hugs and good thoughts coming your way.
0 -
Shetland- Big hug from here.
0 -
SP- Christmas cheer for you! Let us know if we need to break you out of there! We might look likethe three amigos but you know we would do it!!
0 -
Oh, Iwrite, how adorable. I absolutely love the hat and bow tie and those beautiful big eyes.
0 -
SP- so glad you got the fluid dinner at least- in the old days they let an advocate (family) get or bring food- In covid days- so much harder grr.
Home for the holidays I hope-
0 -
Shetland, those popsicles must've been so delicious! I'm so sorry you've been dealing with all this, and I hope you're home very soon. Also sending out prayers that the Keytruda works very well for you and is easy to deal with. ❤
I need to get my act together and do some holiday decorating! It's taken me by surprise how quickly the year has gone...
0 -
So good to read your note SP. I feel the worst is over. I'm sharing a picture of my Nutracker and I hope he will be your protector.
Iwrite, the picture of the baby is priceless.
0 -
SP- I don't have a holiday photo to share but I have a new senior rescue chihuahua who is adorable who will make you smile. She came with the name Tuesday, but I'm thinking of changing it to Tootsie. Unfortunately I continually call her by the name of my recently gone 16 year old, Cha-Cha. She brings items from around the house, including my shoes, to her bed. She snores louder than I do.
0 -
Nina, she’s so adorable. I’m sorry you lost your other puppy. The senior pups have a hard time being adopted. I’m sure Tuesday is so happy to be with you.
0 -
Hi, Shetland Pony. I am sorry to hear of this horrific ordeal. I pray you can get on the desired therapy fast, that it will be promising, and most of all, that you can get "home for the holidays". God Bless you. A big hug and lots of love.
0 -
SP, I hope you are home and heading to the recovery path.
Here is a picture of Boston tonight. Started as snow but it turned into rain.
0 -
Oh my goodness, Iwrite, what an absolutely adorable baby! KBL, beautiful tree. I love a lighted tree. SF-Cakes, help, I ought to recognize that gif but I don't. Lilly, thanks for loaning your valiant nutcracker, and for the pretty Boston scene. Nina, what a sweet sweet doggie. How good of you to rescue her. Thank you candy, Nkb, and grateful, for your good wishes. You guys have made this time less lonely.
I did escape the hospital on Thursday and had my infusion on Friday. It was uneventful.
0 -
ShetlandPony, I’m so happy you’re out in time for the holidays. Sometimes they’re lonely without being confined. I couldn’t imagine it in a hospital. I hope you start to feel better each day
0 -
How are you doing SP? Are you resting and feeling better?
0 -
Shetland, that gif is from It's A Wonderful Life, when Mary sees George at the dance...we watch that movie every year, it still resonates. Hope you are healing and doing well!
0 -
Oh, I never could get into that movie. It perplexes me, though I know many people really like it.
Guess where I am? Yup, I came back to the hospital on Christmas Day. I have intermittent strong pain from a bowel obstruction. Tomorrow they are planning endoscopy to get more info, possible stent placement. It could be infection or cancer, or it could be inflammation from "pseudoprogression" that can happen when immunotherapy is working.
0 -
Oh, ShetlandPony, I’m so sorry you’re back in the hospital. I have been busy all day and just came on to read posts. I am sending you more hugs. I hope it’s that the immunotherapy is working. Please keep us updated. Ugh!!
0 -
Oh no SP. I hope is the medication working and you will get a good result from endoscopy. Sending you hugs and I hope you get some good news soon.
0 -
ShetlandPony: &%^#^%@% This sucks. I have not been on the forum for a few days. Please post on the results of your last "go-around" I too hope it is because the immune therapy is working. Cyber hugs.
0 -
SP- thinking of you and hoping for good news and a happy return home.
0 -
Thanks for the good wishes and indignation, my friends. Here is the latest. The port infection never completely cleared up. It has been lurking in me. So today they removed the port that has been my friend for over seven years. Oddly, my abdominal pains have lessened greatly. Could the problem have been infection? That would be the most hopeful explanation. Only today did someone order a stool sample for the lab. I wish we had a "before". The GI folks don't think it is a blockage. It could be cancer pressing on nerves causing my intestines to malfunction. That would mean figuring out how to keep me nourished while waiting for treatment to work and hoping function returns. No endoscopy or colonoscopy (with biopsies) until blood cultures come back negative. I am very unhappy about losing the port and having painful arm pokes for every blood test. I only have one safe arm to use because of sentinel lymph node removal and radiation on the other side. Also unhappy about the delay this issue has caused. I'm still stuck in the hospital lugging an IV pole around.
0 -
ShetlandPony, I’m so glad the abdominal pain has lessened. I hope that goes away completely. I’m sorry they had to remove the port. Any chance they can put a new port in a different spot? This is coming from someone who has not had a port, so please forgive my ignorance. Thank you for the update. I am thinking about you all the time, so I hope you can feel better soon and get home. Hugs.
0 -
Yes, when they are sure the infection is gone from my body, I can get a new port.
0 -
SP- so happy the pain is better- I hope removing the port and therefore infection makes your body happy and you can go home.
I never had a port either- I don't have any "good" arms- bilateral nodes removed and have had chemo and tons of blood work and transfusions and vaccines and no problems. I don't let them use the automatic blood pressure cuffs- only manual.
0 -
ShetlandPony, that’s good. My right arm has been so good to me. The vein is wonderful, so as long as I don’t have to have too many blood draws, I’m grateful for that vein. When they try to do an infusion by putting the needle in my hand, I have to tell them it’s not going to work. I’ve had them try multiple times, and it’s not a very good place. I hope you’re feeling better day by day.
0 -
SP- Maybe the infection has been the culprit for at least part of this “Holiday in the Hospital” special. It’s no Hallmark movie I’m sure. Any way to tape a photo of something or someone you love to that IV pole? It could be your NYE date.
Seriously, I’m sending a big hug but not squeezing your middle. We all want you to feel better so you can continue living your best life again.
0 -
Happy New Year beautiful Ladies. I wish us all stable and all good news in 2022.
How are you doing SP? How is the new treatment going?
I'm sharing with you a picture I took yesterday in Boston
0 -
LillyIsHere, that’s so funny. Happy New Year.
ShetlandPony, I’m also thinking of you. I hope you’re doing okay
0
