lsaut

Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 
My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 
I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 
 

Thank you, Tom. We called 911 last night. He has post ERCP pancreatitis and infection and had been admitted to our local hospital. Just trying to keep him comfortable now and iv antibiotics.


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Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 
My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 
I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 
 

As follow up, he admitted to me Friday night that he has white stools and dark orange urine. He's had hiccups for days and is still very yellow. Something must be going on with his liver. Helps explain the increased confusion as well, about which he is very defensive. Blood work tomorrow and I'm certain Tuesday the family doctor will be pressing the liver issue. I'll call the oncologist tomorrow morning as well. I am looking at startinf compassionate leave after Easter but will see what the next few days bring. 

Thank you, everyone! It'll likely be me, my 3 yo and possibly my husband. No oxygen, no meds really. What do you do for insurance? I understand no pre-existing conditions (ie the cancer) but I worry about him falling and breaking something  and needing care. Going to talk with him more tonight about options. 

Cynde,
We know you are doing the right things.  Please remember to take care of yourself.  Try and get a break for an hour or so a day so you can refresh your mind and spirit.
I see very good news with the lung mass gone.  As you sort through the next best chemo recipe, ask about radiation for the C7 and T2 mets.  Perhaps stereotactic radiation could fry the spinal mets, reduce bone pain, and improve quality of life. 
Stay the course.
Tom

I have learned selflessness in these passing weeks. That all I can do is love her through it all. When things get hard, love harder. 
The truth about love 
It's more than romance. 
It's more than smiles. 
True love is about going through every motion of your day with pure love in your heart. 
It's about when things get rough, about not giving up. 
It's about when all else fails, love harder. 
Love, love is the greatest feeling. It hurts too. 
Love is what drives me each day. To wake up, to get through my day, to pull me through the moments when I want to give up. 
Love is about when the storm is overhead, that you let it be your shelter.  
Love is being there in the dark times. 
Love is pushing through it all and still seeing that person the same way no matter what.

AMay,
I am new to this forum, but I wanted to tell you that I think your and your mother's attitudes are the right one. Unfortunately this is a tough disease, but your mom's good health prior to her diagnosis is so crucial. My dad suffers from stage IV nsc, and his health was in bad shape before hand. Even still, he is around a whole year after his diagnosis, one that gave him about 8 months to live. People make it through this. They do. Take care of yourself. Make sure you're doing all you can to be mentally okay so that you can be there for her. Good luck on this journey.
Lily

Hi Lily, 
I'm so sorry you are going through this. Don't apologize for  your feelings - that is what this forum is for (IMHO). My stepdad, who lives with us, was diagnosed last December as well with Stage IV nsclc. He did five days of radiation after diagnosis, then chose to wait for progression before chemo since he felt well. He spent the summer golfing and still working full time. He is about to do his second day of IV chemo (he is doing four rounds, 21 days apart, with the last round on December 22). They call it "comfort chemo" I guess. Progression is really starting now. Honestly I'm overwhelmed and he hasn't even "really" started to experience what you and your dad are experiencing now. I know my work will start to suffer, parenting, everything, when all I really want to do is spend time with him. We talk a lot, at his pace, and I let him be angry or sad when he needs to be. We do normal activities to the greatest extent, and follow his cues. They say self care is important but like you, I don't know what that means or how to do it. Will your dad journal? I bought a "grandfathers'" journal that I gave to him a few weeks ago, I'm hoping he'll fill it out with some memories for my son. Is there a counselor or social worker you could talk to? Would journal-ling help you? I try to do as much as I can alone but we use volunteer drivers now and then and I have a cleaning lady coming in every two weeks just to take something off my plate. 
We are in Canada, so we have the option of compassionate leave from work for up to six months, at a 50% reduction in wages. I may do this in the new year. It's so hard. I guess just let him know you are there, and take solace in the fact that you ARE ENOUGH AND YOU ARE DOING THE BEST YOU CAN. 
I'm right where you are, although maybe a few weeks/months behind. Feel free to reach out if you think it would help. <3 

Hi Lily, 
I'm so sorry you are going through this. Don't apologize for  your feelings - that is what this forum is for (IMHO). My stepdad, who lives with us, was diagnosed last December as well with Stage IV nsclc. He did five days of radiation after diagnosis, then chose to wait for progression before chemo since he felt well. He spent the summer golfing and still working full time. He is about to do his second day of IV chemo (he is doing four rounds, 21 days apart, with the last round on December 22). They call it "comfort chemo" I guess. Progression is really starting now. Honestly I'm overwhelmed and he hasn't even "really" started to experience what you and your dad are experiencing now. I know my work will start to suffer, parenting, everything, when all I really want to do is spend time with him. We talk a lot, at his pace, and I let him be angry or sad when he needs to be. We do normal activities to the greatest extent, and follow his cues. They say self care is important but like you, I don't know what that means or how to do it. Will your dad journal? I bought a "grandfathers'" journal that I gave to him a few weeks ago, I'm hoping he'll fill it out with some memories for my son. Is there a counselor or social worker you could talk to? Would journal-ling help you? I try to do as much as I can alone but we use volunteer drivers now and then and I have a cleaning lady coming in every two weeks just to take something off my plate. 
We are in Canada, so we have the option of compassionate leave from work for up to six months, at a 50% reduction in wages. I may do this in the new year. It's so hard. I guess just let him know you are there, and take solace in the fact that you ARE ENOUGH AND YOU ARE DOING THE BEST YOU CAN. 
I'm right where you are, although maybe a few weeks/months behind. Feel free to reach out if you think it would help. <3 

Thank you everyone. I've started seeing a counselor on a monthly basis to work through some of the anxiety and guilt I'm feeling. Last week we had a great visit with the oncologist. Four new spots on the left lung since late November, but largest is 9mm. Another catscan scheduled for the end of August and next appointment after that. Dear step dad has decided not to pursue chemotherapy. His quality of life is really great right now and he doesn't want to spend the summer going through treatment. Will reassess in the fall. He was given 6-8 months in early December, and there has been almost no change in his health, so we are overjoyed! 
 
I have asked my family health team to take him on as a patient for his palliative care when we get to that stage - so waiting to hear about that. 
 
One day at a time! 

Christine - it sounds like your dad is very fortunate to have you visiting. Keep the pillow near by and maybe he'll eventually give in - just like with the market? For social media - how about a poster with a brief overview of whatever he is comfortable disclosing. This page has some great ideas... I love the ones about taking it one day at a time. 
All my best, 
Lianne