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hi melissa–i can really relate to what you’re going through w/your mom. how are things going? any improvement? i’m having the same struggle with my 55 year old husband. i think i care more about his health than he does. not a good place to be, i’m just praying for God’s wisdom!
Melissa, praying that you get a break too. Taking care of a loved one is a big and overwhelming job and it sounds like you are doing an amazing job. Maybe your Mom needs a few days to sort things out in her mind, it is so scary sometimes.
Peace, LisaHi Melissa. Yes this is tough. On the one hand it is good to see your mom getting out with her friends because you mentioned she was getting detached. I emphasize on how hard this is for you, but maybe your mom understands more than she is letting on. No matter how much we love them and want them to do anything to make themselves better the final decision is theirs. Ask your mom what she would like you to do in order to help her. Like Lainy said don’t forget about you and take care of yourself, too. Hugs. Nancy
Aw, Melissa, this is a tough one. I would have done everything you did and said what you said to your Mom. Sounds like she has some denial, going on here or if she ignores it, maybe it will go away. So hard to do our role reversals where you have to be the Mom and she the child. Very hard. I know first hand. Guess, if Mom is off everything for now perhaps you should use a couple of days for just you and by not hearing from you, she may get a message? You know, tough love so to speak. Not sure, wish I could help you more. Perhaps some wise members will come up with something more. Take care of yourself, you deserve a break too.
Thanks everyone. I think I will just emailed Dr Z, like you said Pam, because he responds better that way. And Helen, I totally agree with you that this is the perfect time to re-group and get strong again but today was another set back on that front. My brother found a really good oncologist nutritionist specialist and we’ve been waiting to see her for 2 months. Well this morning we got the call that she has an appointment open today at 4:45pm. Great news, right? Well, not exactly. My mom and dad had dinner plans and sad today is not a good day to go and since my brother is golfing, he can’t go either. I tried to tell my mom that her health is more important than seeing these friends tonight and that she should come first. I said that they will understand if she has to cancel. I said my dad could go to the restaurant and I’ll drop her off at 7pm after the appointment. I said that this is perfect timing because she has 2 weeks off any chemo where she can get stronger and healthier. It’s perfect timing also because I just took a chef over to meet her on Tuesday (is that just yesterday?) and for the chef and the nutritionist to work together while she is NOT on chemo is a great opportunity. She said no, not today. I started to cry and said that I am working so hard to help her but she is not taking herself seriously and all I want is for her to feel better and there’s an appointment today for her that could help her feel better and she won’t go and I don’t know when we can get back in again. Ugh! I feel very frustrated right now. I told my dad that I need to step back because I can’t care more about mom than she cares for herself. I can’t be more invested in her health than she is. I said these are all just choices we get to make and it is symbolically very significant that she is choosing dinner over going to this appointment today. I’m at a loss.
Hi,
I personally prefer asking your mom to see whether what choices she will choose after you explain of the chemotherapy treatments that doctor will prescribed for your mom in details. As you know,Chemotherapy is “evidence-based ” medical practice. Complimentary or alternative treatment (CAM) such as using dietary supplements are not.The third option is doing nothing ,just palliative care)for the purpose of quality of life for the patient,but I don’t think your mom is at that stage yet.
If your mom has a “case manager”,this will be the best time to ask for their help to manage the disease for your mom;they suppose to work solely for your mom and not the insurance company.
God bless.Melissa…
Contrary to what others might think, I believe that now is the time for your Mom to “dig-in” and allow her body to take up the fight. Now that she is no longer on chemo, she can begin to build her immune system back up with good/healthy foods and supplements. I am a firm believer that God gave us this major weapon in the battle of cancer and that if we allow our immune system to get healthy and strong, it can fight and win the battle!I stopped chemo 3 months ago and I have never felt better! The recent Cat Scan showed some cancer cells died off, others remained status quo and other new one’s popped up, but I chose to take the good news and throw away the bad. I know this thing is not bigger than the God I serve!
Maybe now would be a great time for the two of you to do a mini spa/vacation week-end. It would lift her spirits and give you both time to relax and enjoy each other’s company without the stress of dealing with or discussing her situation.
Much love to you and you Mom!
Melissa,
Try writing down all your questions and tell Dr. Z you have a list and would like answers. I know Mondays are super busy there. He seems to be running in all directions to get to see everyone. We have only felt rushed a few times, but we understand since he is so busy and I think getting busier. I kind of think the PA’s are a waste of time because he asks all the same questions and they can’t ever seem to answer my questions. We go on Wednesdays. It doesn’t seem as busy as Mondays. We would love to meet you. Take care and best wishes.
Love, -Pam
Hi Melissa
I totally get where you’re coming from. That kinda news just jolts you. I remember driving home in tears. Tears are good. My husband is quite depressed. I try to have friends and family over to keep his spirits up. You’re a great caregiver to mom. I will say a prayer.Hang in there and talk to you’re friends too. They’ll bee there for you!!
TeresaHi,
As a patient, I totally understand your mom’s feeling at this point when the news is not going your way.
Your mom had tried Xeloda and Gem/CIS I think for total of six cycles.
I am not a doctor; but if the doctor find any new lesion or the bio marker result not coresponding well with the treatment;or based on the doctor’ judgement ,Using functional criteria such as the EASLEY criteria or the RECIST may provide a more accurate reflection of the tumor burden and treatment benefit about the chemotherapy,then the doctor will make the final decision of the entire treatment plan. I think the doctor is more concern about the tumor burden that your mom had base on what I can understand about this cancer.
Sorafenib is a multiple tyrosine kinase EGFR inhibitor and it has been used for liver and cholangio CA like your mom had. It may work for months and the side effects are not that much; however, drug resistance is common after a short period of time ( ie: as in months).
Clinical trials most are involved newer targeted agents( ie: like sorafenib, the small molecules or the Monoclonal antibodies like Avastin etc.) . The chemotherapy agent that your mom has NOT on are irinotecan and the taxol family agents but they are tough to take .
God bless.Pam, thank you. I was looking at your blog and started getting teary eyed looking at your beautiful family and knowing what you are going through as well.
I was prepared for a long fight so Dr. Z’s recommendation to stop chemo today, that minute, was jolting. To not recommend some other chemo or treatment to actually fight the cancer was disheartening on top of that. And while my mom really likes Dr. Z a lot, I am always wanting to ask a lot of questions and feel rushed, like there’s no time to breathe or process or think or formulate another question before he’s gone. He is really good at responding to emails very promptly and I very much appreciate that. Today I am probably a little frustrated that it didn’t feel like he was fighting for my mom.
And yeah, I believe that tomorrow or the next day I will feel hopeful again but this is our first major blip since her diagnosis and I am just giving myself permission to feel crappy and scared for the moment.
Now I just need to figure out how to go to sleep. I think I’m a little afraid to go to bed because if I lay down with no distractions, I’ll start thinking and worrying and letting more fear enter the picture.
I often think about you and Lauren too and am sending healing energy your way.
Love, Melissa
Hi Melissa,
I read your blog all the time, so I already knew you did not get good news. I tried to write a comment but it didn’t work. I tried another time and it didn’t work either. I am really sorry to hear you did not get great news. We didn’t either, but you have to go on and have hope. Your Mom sounds like she may be a little depressed. Who wouldn’t be! I would talk to Dr. Z. and see what he thinks. I get the impression you don’t care for him that much. I felt kind of like that for a little bit, but now I just love him. He tries so hard to help Lauren and cares so much about her. He has to tell the truth and sometimes that is not what we want to hear. We think about your Mom often and pray for you both. I hope your Mom gets some rest and can start a new treatment that will help. By reading your blog I can tell you are very overwhelmed in trying to do it all yourself. You need a break or you are going to burn out. I hope some of your friends step up to the plate and help you. You find out who your true friends are in times like these. Take care Melissa, and I wish you all the best.
Love, -Pam
Melissa, there are so many reasons Mom’s attitude can change. She may just be plain tired, she could be a little depressed, she could be frightened from the latest news, but I would ask the ONC about it and see what he thinks can be done to give her a pick me up!
Today was a rough day. The oncologist at University of Michigan said that the chemo has not been working, meaning that the tumors have grown a very small amount and the blood markers for her cancer have gotten slightly worse over the last 3 months. So he stopped treatment immediately (my mom was supposed to have chemo today but it was cancelled and she got a blood transfusion to raise her hemoglobin instead). The plan will be to take 2 weeks off of any treatment and see how she is feeling to reassess what her baseline is. Then we can decide if we want to try chemo again (the goal of this is to reduce the size of the tumor enough that it can be operable) or her second option would be this chemo by pill called Sorafenib, or Nexavar and right under the name on the fact sheet the doctor gave us, it says, “Treats late-stage kidney cancer and liver cancer that cannot be treated with surgery”. So that is a treatment that is supposed to help prolong life but not shrink the tumors (I don’t like this option). The third choice is experimental treatments, new drugs, etc.
The news is not good and I am pretty freaked out and so is my mom, but what is more problematic right now is my mom’s attitude. She seems to be detaching from things she likes to do or being around people much, even family. She doesn’t garden much anymore, she doesn’t golf, see friends, go to sporting events, or even go out a whole lot. I am worried that she is not fired up or ready to fight this but rather, is letting it happen to her, like she is a passive bystander.Ugh.
Melissa
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