Topic: This sucks!!!

I haven't posted for a while, but I am so frustrated and overwhelmed feeling that I have to vent. SO it's been 5 weeks since my MIL was disgnosed with inoperable stage 4 CC. She just finished her 2nd round of oxi/5fu. She takes percocet every 4 hours and is on a fentanyl patch because her pain is so bad. She also hasn't eaten solid food for almost 5 weeks ( except for 1/2 a bowl of cereal 2 days ago) She says that she just can't eat...just sounds too awful to put food in her mouth.
This waiting game just sucks!!! I HATE IT!!! I just want some answers and I feel that the oncologists we have met  just sugar coat everything. I know that we have to be positive...I am trying, but I am a nurse and also realist and I just don't think things are looking good. I absolutely HATE being the "medical" person in this situation. Please don't think I am this dark cloud. I DO believe in miracles. I AM the "HALF-FULL" person!!!
I know that denial is the first stage of grief, but I feel like my husbands' family just needs to be a little more realistic.
They bought $500 tickets to see Barbra Streisand in a month from now, but didn't get her a box where she can possibly bring a wheelchair. She can't sit up longer than 5 minutes right now because of the pain, but they expect her to sit through an entire concert? When I mentioned getting her a reclining wheelchair for the concert- my father n law looked like he wanted to rip my eyeballs out. Once again- I'm the "negative one" in the family. I just want her to be able to enjoy herself. I told him that if I had a broken leg and wanted to go to a concert that I would go in a wheelchair too. What's the difference? She is sick! This is just so hard. SO HARD!
Do they wait until the 8 weeks is up to do another CT? Did anyone ever have a doctor say the chemo was working or not workng before the whole regime was over?  I am rambling and I am so sorry. I know there are no exact answers and I don't really expect them...just had to vent smile

Thanks for listening,
Lindsy

Re: This sucks!!!

Oh boy, Lindsy, you sure have your plate full. The first thought that comes to my mind is what does your husband say about his family? If MIL cannot go to the concert...it's their loss of 500.00! Perhaps you need a break from all of them. If MIL pain is under control and she is taking her chemo what else can you do? Even if just for a week or 2 put it in their hands and you can always step back in if needed. My other suggestion would be for the immediate family to all meet with the ONC and if he is not telling all that needs to be told then you prompt him with your questions in front of them so they have to listen. I was lucky as I was able to call the shots for my husband and no one questioned me although they did know how bad the situation was. Do you think that by not eating she is giving up? I feel bad that you have to put up with all this besides tring to help your MIL. Pleae let us know what happens. P.S.  Not sure about the Scan question, I think the ONC orders it when he feels it is needed whether she is done or not with the chemo. Not sure, my husband did not have chemo.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: This sucks!!!

Hi Lindsy,

I am sorry you are having such a rough time. I understand how you hate being the medical person in this whole thing. I remember reading the CT report to my daughter Kristen, who is a physician, when my daughter Lauren was being diagnosed with CC. She had to explain everything to us while dealing with the grief of it all herself. She also has access to Lauren's scan reports now before we hear them from the oncologist. It is so difficult for her to tell us anything bad. It hasn't been that long since your MIL was diagnosed. I am sure your family will come around and realize just how sick she is. It is really awful that she can't eat. Can someone talk to her doctor to see if there is anything that can be done about lack of appetite and her constant pain? I don't think a doctor can tell if chemo is working or not unless scans are done. In our experience, Lauren has had scans every three months. Don't ever say you are sorry for venting. That is what we are here for. I hope things turn around and the chemo starts making your MIL feel better. She is lucky to have you.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: This sucks!!!

Lindsey…. I have learned that some people escape the reality and stay in denial because, the reality is too painful.  This reminds me of a quote by Bill Watterson: It's not denial. I'm just selective about the reality I accept.
I feel for you – this is not an easy position to be in. 
Is your MIL drinking a protein shake or something similar in order to sustain herself?  Although food does not appeal to her is there someone specific she could be enticed with?  Do you know of a particular food she likes? 
What I also don’t understand is the pain she is experiencing. Often times medications have to be switched for effectiveness.  But then you know that already.  Has this been brought to the attention of the physician or is your MIL not taking her medication?  I can see your frustration – the ongoing pain and the lack of food intake should be concerning to all. 
Is it possible for you to speak with the physician explaining the situation in private?
Just some thoughts.
Hang in there, Lindsey.  These critical illnesses are stress inducing for all; remarkable is how differently we deal with it.   
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: This sucks!!!

Lindsy,
I'm so sorry to hear about all you are going through with your mil and in-laws in general.  I think some may be just due to different personality types.  I found its been better for my family if I wait for them to ask about the different aspects of my sons disease then I tell them the harsh truths and finish with how we are fighting.  My son, who is 30, is not a candidate for surgery, according to three highly regarded surgeons. 
We arrived at the Cancer Treatment Centers of America in Phoenix with him in a wheelchair and very very ill.  He is now lifting light weights, working on an old truck, and engaged in his life.  A lot is due to his youth, physical therapy, etc.  but the biggest turn around was when we stopped the weight loss with a medical marijuana vaporizer.  He is on the same regimen of chemo as your mil, we tried everything and finally a friend brought a vaporizer over and begged him to try it. 
It works.  There truly is a valid use for medical marijuana.  As you are in California also please attempt to have your in laws avail themselves to this.  As my son put on weight he became stronger and a cycle of healing started.  We do not know what the future holds but we are all enjoying every moment together and he is eating full meals with the family!  His tumors are shrinking but the Onc has stated when he stops chemo they will return.  We will see.  It's a horrible heartbreaking disease.  He is also taking methadone for pain and has been able to cut it back to a third of what it was.  When we arrived his Ca-19 was 110,000 it is now 1030.  That was June 1 of this year.

Re: This sucks!!!

Dear Notdoneyet, thank you for the great update on your son. A good news post indeed. I wish I had known you were here in Phoenix we could have met for a little visit. Wishing for your son to keep up all the good progress!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.