Talking Frankly about Living with Advanced Cancer

I have complete blood work and a CT. That is until this last visit when I was only seeing my pulminalogist and I ASKED what the blood work was checking for. They didn't schedule a blood work-up. I know my cancer does not have markers and the blood work was necessary while on chemo but I will have to check with oncologist on who is ordering and why? I just like to know what they are looking at, I know there is a lot that needs to be monitored at this time but it is never discussed during my meeting with Dr. unless I bring it up.
One of the great things about most Mayo Dr.s' is that they will take as much time as you need for questions. I had growth during chemo so we stopped that in Jan. and had more growth in April, not much but enough to be considered growth … more than the 10% rule my Dr. goes by...he says anything less than 10% is considered stable. That's what he thinks LOL to me growth is growth!! and all those littles add up to a lot ! If I may add a comment for @ventibug anxiety can suck the joy out of living if you let it. It sounds like you have a strong faith so all I can offer you is trust and be thankful. Trust that God will give voice to the questions you have and be thankful everyday. People would look at me as though I was crazy when I said Cancer was something I could be thankful for in that it has made me a better person. More understanding, more giving more generous of my time and so much more. Thankful for the 100% joy I take in 5 grandsons 2 of whom were born after the cancer. I just turned 60 which in itself is a gift, I was given weeks to months to live when diagnosed that was 9 years ago.
Of course I still have the pre-visit anxiety but not as drawn out as it used to be. I don't believe that will ever go away. Holidays bring so much Joy and sadness accept that as your new normal, don't try so hard to not be anxious or sad or angry It is all part of the journey.
He knows the plans he has for me. If any of this helps I am glad.
allison

Hi @allisonsnow
You wrote about one oncologist ordering a PET scan every 3 months and now you have an oncologist who doesn't monitor with PET scans. And you asked, "Who's right?"

Naturally, it is a great and valid question to ask your current oncologist why s/he doesn't order quarterly PET scans. I encourage you to ask.

Not knowing all the details of your case and I'm not a medical professional, I can only tell you that there are many factors that go into deciding when to do imaging studies and when not to. Sometimes, more is not necessarily better. Scans can be trying and may even cause side effects themselves. When cancer is very slow progressing or in remission, it may not be necessary to be monitored as frequently.

Perhaps you are having other tests to replace the PET scans. What tests do you now have with your 3-month visits?

Thanks @windwalker Hugs back!

@IndianaScott Hi Scott. Your wife sounds like someone I would have loved to have had as a friend. We have interior design in common (and wine). Life can be so unfair when disease comes along and snatches away your dreams. Big Hug to you, Scott.

@ventibug

You are sooo right! Simplistic responses to complex problems are not at all helpful. They reflect a lack of understanding. I have learned to soften my irritation to simplistic responses by realizing that they simply don't understand my situation and chalk off their response to ignorance and lack of experience in the tough stuff of life.

Groups like Connect give us a place to share with others who understand. That is probably why we are all here.

Teresa

@shortshot80 Hi Nancy. Can you at least tell us what kind of book you are writing?

@kateia. Thank you for persisting in relationship with your friend. Many herein have mentioned their loss when friends/relatives dissapear from their lives when they have cancer. Please do not underestimate the value to her of "being with", just adapting the pace and pattern of the last 2 years of your friendship, and staying in relationship. When I have done that, I have always been so blessed; I am certain I received more than I gave to my dieing friends. Now, to learn the corresponding role as i am the patient. Ah, gee, another Dang learning experience!

@nogginquest. Thanks for your honesty. I am already tired of being told not to be negative. I am human. Some of my emotions in response to loss & grief are negative. I dont want to stop being fully human. Silly people. I have never liked simplistic responses to complex human experiences.

I bet you would have @ventibug She was a pistol for sure! 100% full Italian, driven, loving, and an amazing partner who always had my back. She and I were about polar opposites. She was creative, an artist, and an entrepreneur who created a chain of five children's clothing stores and then reinvented herself as an accomplished interior designer. I don't have a creative bone in my body, can't draw in a coloring book, and always worked for large firms.

At the end of her life, when she was designing her Celebration of Life, she asked me to get a second sheet of paper. I did and asked why. She said it would be for the list of those folks she wanted me to invite to her Celebration. I said 'honey, these things are not usually done 'by invitation only' you know!' She responded with (pardon the language) 'Scott, I don't want someone in our living room blowing smoke up your a*s telling you how much they cared about me after I'm dead, when they didn't give a sh*t about me when I was alive'.

56 names. 54 attended (the only two who missed were overseas). She even picked the wine to be served. We drained 62 bottles that night!

Yes, I think you might have enjoyed her!

Strength, courage, and peace!

@jamienolson oh I have plenty of anxiety to share but, yes, I need help navigating. I dont know how to start a thread. Where is the "start a thread" button? We all know life is not fair, but my Iphone croaked the week I started chemo. I was so mad that Apple wouldnt do anything to help me with a 23 m/o Iphone on recall that i refused to buy another one! Now Im trying to learn a new Samsung phone! Joke is on me!