Thursday, July 30, 2009

Email from a Cancer "Survivor"

The following is an email that I received from a cancer patient named Georgiana. I am publishing it with her permission, although I tried to remove identifying characteristics, I am leaving the remainder of the email unedited. Georgiana, my apologies for taking so long to get this up on the blog. 

I hope you find her words as valuable as I do. Georgiana mentioned to me that she is considering starting her own blog, and I really wish she would because she definitely has a perspective and a story to share. 

"I am Georgiana McAdams, a 67 year old mother of 4 widely scattered children and a supportive,loving husband of 45 years. In 9-05 I was diagnosed with stage 1V rectal cancer - pathology from resection surgery showed progression to the liver. After a visit to -- Cancer Center and literally hundreds of hours of research into my particular cancer, I opted for nothing more than palliative care with an oncologist. No chemo - no radiation - nothing. I should mention I am not a professional, but have studied medicine passionately for many years. Currently I am entering "the big adventure" and uncharted territory as my liver functions are deteriorating and I have ascites and ankle swelling (being managed). I fully know what to expect right down to the very end and am in total acceptance. It's the little things that get you down - not fitting into your favorite jeans - or finding your favorite shoes are too small due to fluid accumulation, pain when bending due to tumor pressure, etc. I also have a small tumor in my left lung now. However, -- (Cancer Center) gave me 6-9 months in Jan. of '06 and my oncologist, based on current labs, says about 6 months now - that was in March. I think I will make it a little longer. Main point is my surgeon, oncologist and PCP will
tell you I gave myself a better QOL than they could have. I should also mention I broke my shoulder 2 years ago
and last June broke my hip (pinned). While I am slower I still manage to get out most days. I am ready for hospice
whenever it comes and have my family fully educated on what to expect so that there will be no undue hysteria
over what will be the normal process of dying. Please understand I am not advocating my choices for anyone else - it simply was the right one for me despite medical pressure in the beginning to do otherwise. My dilemma is communication with other people who see me as giving up the fight (although any doctor I talk to says they would do it my way) or simply not discussing the horrid, big "C" word. We really do need to change our views about death and the dying process. It is a normal and totally natural conclusion. I  currently know several people who have lost a loved one and in each case, there were last ditch, invasive procedures, costly moves to yet another trial center, etc.  These poor people should have simply been brought home and left to die in peace surrounded by supportive family. I am actually looking forward to hospice as then there will be the opportunity to talk it all out with someone who understands from a medical viewpoint. Lord knows, my poor husband has willing suffered
through too many hours of this and I just refuse to burden him further. He has heavy cardiac problems and is a doll nevertheless. Our local Cancer Support Group is a joke and again no one seems to understand my position of "do nothing". They say once you have cancer, a day will not go by without you thinking about it. Well, I can actually forget it for a week or two, although daily I have pain issues in various places, but I don't think cancer pain, I think shoulder pain (tumors pressing on the diaphragm) or abdominal pain or leg pain, etc.  I am absolutely sure that if
I had opted for chemo, followed by liver resection (Not even sure I was a candidate due to location of tumors) and then hepatic artery infusion, I would have been long gone.  Instead I have had over 3 and 1/2 years of decent QOL, if not prime.  There are always "new normals".  There was a time when you were considered a survivor if there was NED after 5 years. I understand that now you are a survivor if you have cancer and are still alive. How can I possibly
consider myself a survivor? It simply isn't to be and that's really O.K. ... I am doing my
best to educate people, where I can."


Christian Sinclair, MD said...

Georgiana and Jessica,

Thanks to you both for sharing this. I expect that this may become a less 'strange' sounding story in the next few decades. I have had similar conversations with patients and families more frequently in the past year compared to 5 years ago when I started doing exclusively hospice and palliative medicine. These are intense personal decisions to pursue treatment. You are lucky to have a supportive medical team as well.

Jessica Knapp said...

Thanks for your comment. I know if Georgiana reads it, she will appreciate it. She expressed to me that she was worried people would react negatively to her decision to refuse to actively fight her cancer.

I think you're right, Christian, that there is a sense of people becoming more aware of how personal these decisions are and how many options are out there. You don't just have to do everything you can to attack the disease. You can decide to do what works best for your life.