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Thank you all so much for such kind words. I am so touched by the responses from everyone, truly.
Lainy, what a beautifully appropriate poem, I agree with your words wholeheartedly. Celebrating his life would certainly be his preference, versus mourning his death. Grief brings both, but the former has won more times than not… which is largely due to his influence on all of us, certainly.
Marion, thank you. For the tireless work you do, for your insightful words of support and encouragement, and for your response to me specifically. It puts a smile on my face to know that my dad would have adored your response, and likely read it out loud to all of us on a regular basis.
Darla and Kris, I agree with your thoughts regarding grieving, how different it seems to be for everyone, as well as the comfort in knowing that he was never in pain, and if he’d had a choice as to how his life would end, this would’ve most definitely been it. Quick, painless, not a burden to anyone, and surrounded by the ones who loved him most.
Julie, it meant so much to read your response. I do hope my dad would appreciate the fact that I went out of my way to keep his obit in tune with the way he lived his life and would likely want to be remembered; quick, to the point, infused with a touch of humor and showing of his true character.December 9, 2013 at 4:34 am in reply to: Received bad news yesterday and looking for advice #77740
I too am the daughter of a father who is dealing with the same cancer. Different situations, but similar feelings of helplessness. As his advocate/researcher/daughter/supporter, start at the beginning. It’s overwhelming to know which avenue to explore/which doctor to contact/which resource to tap into for research. Just do one thing at a time. It worked for me. Make lists. Contact anyone and everyone until you get answers. Search through the forums on here for names of specialists. Call hospitals, ask for names, numbers, email addresses of doctors, nurses, and specialists. It’s stunning and humbling how helpful and informative people (on here, in hospitals, etc)have been and continue to be. Mostly though, take care of yourself. And by that I mean try to sleep. Go outside and take a walk when you can. Just my opinion, but those two things usually keep me from totally losing my stuff! You don’t realize it right now I’m sure, but having his daughter by his side to give him perspective and hope is your dad’s fuel to fight this fire. If there’s anything I can do, please let me know.
I haven’t written in a while, but I went home to Cincy for Thanksgiving as did the rest of my family and it was great to see everyone and hang out together. My dad did well, he seems to tire out a bit easier but that’s to be expected. We all spend lots of time together, and sat around the dining room table after dinner one night, laughing and joking around for hours. It was exactly where everyone wanted to be at that moment and I’m so grateful that I was a part of it.
My dad is still tolerating chemo quite well, all things considered. He’s lost some weight, and looks a bit more fatigued than he did before, but otherwise he still seems to feel pretty decent. He had a kidney infection that he took meds to treat, and as far as I know it is under control at this point.
The onc seems to feel strongly that my dad’s tumor has shrunk (just by feel and touch to my dad’s abdomen) and has ordered another scan to confirm/deny this.
I also sent his history and scans to a few other doctors/specialists/hospitals after reading all of your helpful responses. Karen Marshall, the nurse I have been speaking to at Northwestern’s IR dept has been WONDERFUL. I have never come across someone as informative and accessible. She gave me her cell phone number, called me after hours just to make sure my call was returned, and explained all of the possibilities regarding treatment for my dad in depth and in a language I could understand. She was surprised at how much I knew about IR, which in turn surprised me, but hey, I’ll take it! If only I had put forth this much effort into studying when I was in school! She and I have been playing phone tag but I plan to speak with her tomorrow and have a more in depth conversation as to their findings. From what she left on the voicemail, she (and the Radiologists that viewed my dad’s case) is of the opinion that performing the treatment where they go in and surround his liver tumor with small beads filled with radiation would indeed be beneficial to his situation. She had a sense of urgency on the phone and mentioned him coming up to Chicago as soon as next week to do the initial mapping of the liver in order to figure out the dosing, etc. I tried to call her back, but it was too late in the day to reach her so I sent an email letting her know that at this point she needs to speak with my dad directly, as this is his decision. I am not exactly sure if he understands exactly what the procedure entails, the benefits, drawbacks, etc. and I think it would be much easier for him to get the answers he’s looking for if it comes from someone who deals with this on a regular basis, as opposed to me trying to relay the info from the docs and nurses.
Until now, my mom has been a mostly silent player in the information game. It’s somewhat surprising to me, since she is in the medical world and has been for 20+ years (on the medical records side of things). When I initally broached the idea of securing more opinions, she immediately became defensive and insinuated that I didn’t trust the ONC in Cincy or his opinion on my dad’s current treatment. On the contrary, I think Dr. Crane is a fantastic oncologist. But he is just that…an oncologist. He is not a radiologist nor is he god. I tried to reiterate this a few times, calmly, to no avail. My dad sent me an email shortly after requesting that I continue to move forward with opinions, and that we keep things between us (us meaning he and I) until something worth discussing came to be. Well, after learning of the IR side of treatment regarding ICC, I think that time has come. It seems to me that in a way she is doing exactly what she feels her role is in this scenario…to be my dad’s caretaker and support system. She’s doing an excellent job, and frankly I think she’s too scared and too exhausted to look beyond what’s right in front of her. Her best friend lost her spouse to cancer some years ago, and he tried all kinds of trials when he ran out of approved treatment options. I think she’s fearful that agreeing to something that is not part of the initial “plan” will put my dad into a similar situation and that he will be in pain, or subjected to something that will make his situation worse, given the fact that he is tolerating chemo so well. My hope is that after presenting this info to both of them, that she will open her mind to other avenues and advice regarding possible treatment options and resist new information a bit less. I continue to tell her that we are all on the same team. If he decides to pursue IR, then I will do whatever is necessary to help. If he doesn’t I will be completely ok with that too, as it has been and will continue to be his decision, and his alone.
Thanks for letting me vent! I love both of my parents and am offering whatever support I can to each of them. Some are just a bit more stubborn than others.
I will update everyone when I have a better idea of how this is all going to shake out.
Thanks for the link. I found that same page yesterday right before I read your
Response and contacted one of the nurses within IR via email. She called me this morning and said they are more than happy to review his case and to send them over his info ASAP. So, that’s what I will do.
Lisa, thanks for the message! Cleveland clinic was on my short list as to who to track down next in the way of consults!
Also, sending his stuff to an IR at the univ of cincy that was recommended to me by a good friend/nurse anesthetist at the hosp. She asked around and this seems to be the guy to go to. Dr. Ristagno… And also to Dr. Chapman in St. Louis.. We shall see what happens!
Thanks so much for the advice! My brother said that they met with the nurse practitioner at the last treatment, and from my understanding she essentially told them that they needed to discuss other treatment options with Dr. Crane himself. My dad has the next two weeks off (one because it’s his usual 3rd week off of treatment, and the following Friday due to the Thanksgiving holiday) so he will meet with the oncologist again at the beginning of December when he returns to begin the next round of treatment.
My dad sent me all of his scans, etc. so I will be receiving them tomorrow in the mail and plan to send them to Dr. Chapman, in St. Louis, based on the research I’ve done and also based on the wonderful reviews of him on this site. I’ve also sent preliminary info via email to my contact at the University of Chicago, and she is sending it to the GI oncologist, so once he receives my email, we will go from there. I will contact Northwestern tomorrow and find out how and to whom to send his records in order to receive an opinion/consult, etc.
I will let you know what I hear back from them! Will they offer an opinion based on his records or does he have to physically go in, in order to obtain a consult? Not entirely sure as to the protocol for all of this. I know people on here have said that the doc in St. Louis (Chapman) is willing to look at his stuff without requiring a visit, was just wondering if you know how any of that works at Northwestern, Rush, etc.
I appreciate your help and advice regarding all of this, it’s been hugely helpful. I also appreciate everyone else chiming in with positive thoughts and useful information. This website has been a godsend. My dad is still in positive, great spirits and still continues to be his old self. Chemo this past round knocked him down a bit for a day or two after, but his energy level bounced back to normal after taking it easy for a few days.
I’m a little late to this post, but wanted to let you know that Sunwarrior, is an excellent protein powder. It’s vegan, and comes in both vanilla and chocolate. I’ve done a lot of research on this as I was trying to find the most “pure” version of protein powder out there for myself, as well as for my dad. It tastes really great, and you can add a bit of it to almost anything.
Also, since a lot of the adult pre made shakes don’t taste great, on the advice of a nurse friend of mine I tried Pediasure, in vanilla, as a possible alternative. Same nutrients, but much better taste. I buy the mini bottles of them from Costco and my mom adds a mini bottle of that as well as the powder to a shake she makes for my dad each night with ice, almond milk, frozen yogurt, and occasionally pumpkin puree. Hope this helps, good luck!
Hi! PCL, so glad to hear you live in the Chicago area, I have so many questions! My dad sent all of his scans, records, doc notes etc to me in the mail today, to give to other physicians here in the surrounding areas in regards to additional opinions, etc. Any suggestions as to where to start? I’m not sure how to go about contacting some of these doctors to check and see if they will even take a look at his records, etc. I have a few connections at the Univ of Chicago, but am trying to find a doc who treats this cancer somewhat regularly and who will also be willing to give an opinion regarding his diagnosis/treatment plan/options. I know you’re well versed in all of this so any thoughts or suggestions would be wonderful! Thank you!
Makes perfect sense to me. I have sought out a few different interventional radiologists as well as another oncologist here in Chicago who have agreed to take a look at his scans. I figure at this point the more resources I tap into, the better. My brother will also bring up this info and a few other questions to my dads current oncologist at his appt tomorrow morning…
Thanks everyone for the warm welcome. The helpful
Suggestions and positive words go such a long way. In regards to the suggestions made by PCL yesterday, I have forwarded them on to my brother, who will be taking my dad to his treatment tomorrow. He also happens to work in the medical world, radiology in fact, so I asked him to talk to one of the docs at University Hospital, where he works in Cleveland, as well as to the oncologist or nurse practitioner (it switches back in forth as to who they meet with each week) in Cincinnati. I am eager to hear what is said as far as feasible options are concerned. Thank you again to everyone for their responses!