Things "WE" Don't Talk About With Most

mojogirl67

I am posting this because I have had several members contact me about "no chemo for life" stance thru email. I am very open and straight-forward and in no way want to impose my own decisions into someone else's. I respect each of you and the turns you have to make to navigate this crazy beautiful thing called "life". This is just about my own "driving" down the path and choosing which way to turn. When I was gathering my progress notes to send to MUSC with my CT results, I read the last one. My oncologist has never discussed "time left" with me. Rightfully so because I think no one knows that answer. I have accepted that this cancer will most likely be my ticket to the other side. In the progress notes he gave me 1-3 years with treatment. It is weird to see that in print..my own expiration date so to speak. I thought I would panic or freak out when those numbers were laid on the table but I didn't. In my cover letter to my doctor in Charleston, I told him I would rather die on an operating table taking a chance than dying on chemo in my chair. I still stand firm on that. If my doctors in Charleston require I do some rounds to be eligible for surgery, I would consider that but not life time chemo until my number is pulled. I know we are all different and have different drives behind our choices. I have had a wonderful life with my husband, children and grandchildren..blessed beyond expectations. Of course, I want all of the quality time I can have here. Chemo for life is not quality at all for me. The port and infusions make me feel like someone in the movie "Alien" where the being takes over the body. On treatment it felt like I was in a smoky haze. The uncertainty of not knowing what the chemicals were doing inside my body besides the "known" effects just didn't outweight clarity and being in full possession of my thoughts and body, even if my body was missing pieces or not operating on a full tank, lol. I know if surgery does not come for these mets that eventually they will grow and take over my lungs, decreasing my oxygen and all that comes. I have made peace with being in my bed or chair at home on an oxygen machine at the last and hopefully taking a somewhat peaceful last breath. Sitting in the chemo infusion chair with that damn port sticking out of my chest made me feel like a car at the gas tank instead of a human being. Taking the pump home and listening to it while a million what if's danced in my thoughts oncerning the side effects waiting on disconnect days drove me MAD. That was NOT living to me. I felt sick and foggy not matter what meds they adjusted for the side effects. My hair fell out..my nails got brittle...my joints ached...I could not sleep peacefully. NO ONE could give me any certainty about the odds. No matter how many medical articles, latest research, patient accounts..etc that I read, there were no guarantees or certainties from the doctors guiding my care. They are learning as they go, same as we unfortunately have to. I did have the very real experience of being with my husband 24/7 while he went thru the same exact diagnosis and treatment. I spent over a year from the moment of diagnosis to the last breath that he took with a front row seat to all of it. I was there for every infusion, every moment of hope and disappointment. I rode the rollercoaster with him. I watched him wittle away pound by pound. He consented to the insertion of a feeding tube pointlessly at the sugestion of the "good doctor". It was his choice and I could only watch and hope he would soon say enough is enough. So, I don't' make my choices blindly...They are made with absolute clarity.  Add in to the mix, the astronomical cost of health insurance related to chemo and "treatment"  that is nothing more than a Ponzi scheme at the expense of of a patient's will to live, and that becomes the icing on the cake for me. I will NOT be a guinea pig and have long realized I am not my doctor's loved one or family member that they would move mountains for. I also know that we pay for their sports cars, country club estates and more ,that is more oft than not, not deservingly earned for the oath they take to preserve life. I have respect for them same as I do for any profession but they are simply human as we all are, not Gods who are going to make the call on my life or death.  Please understand, these are MY feelings I am sharing and I respect that each of us are uni,que in thoughts, choices and being. I only share this because I have had so many reach outs from others. We are all "terminal" from the moment we take our first breath. This just happens to be the ticket I have out. I'm OK with that. I still have faith, believe in fate and faith in this beautiful life, and hold the belief that miracles happen every second for all of us. I appreciated the reach outs and suggestons as well as sharing your thoughts on life-time chemo. It simply is not for me. Much love and huge hug to all of you ...M

SnapDragon2

You write from the heart as

You write from the heart as if I can hear you say the words outloud.  I admire you and your strength over cancer.  I pray for you every day and did cry yesterday (I aint gonna lie).  So much love to you!

SandiaBuddy

Chemo

I am with you.  These are all very individual choices.  Death is inevitable, and how you live between now and then is strictly up to you. I think everyone here is operating in good faith, and your clarification of your values in this area will help us all to understand and respect your decisions better.

Trubrit

Nothing should be taboo here on the forum

I have had a few complaints in my time, and thats fine. I speak my mind, hopefully with kindness but firmness. 

You speak your mind, and I appreciate that.  

I am still heartsick that you have to suffer so. After watching your husband fight and pass, it just doesn't seem fair. It isn't fair. But we all know, life isn't fair. 

You have my support whatever your decision. 

Tru

airborne72

Drive on young lady.  You

Drive on young lady.  You express clarity of thought and purpose.  I respect and admire your assessment of the situation and your courage.

We only have the moment in which to live.  You underscore that in your activities (with loved ones) and your desire for quality of remaining life. 

All forms of cancer are insidious, but CRC is such a thief, attempting to rob us of both our health and dignity.  Thank you for sharing your decision.

Jim

mojogirl67

SnapDragon2 said:

You write from the heart as

You write from the heart as if I can hear you say the words outloud.  I admire you and your strength over cancer.  I pray for you every day and did cry yesterday (I aint gonna lie).  So much love to you!

Coming Straight From The Heart

I have cried a million tears and wonder where they all come from..endless supply, lol..Crying is a good soul release. I grew up with brothers as the only girl so my young years with them taught me to hold them in and "never let them see you cry"..lol..I wanted to be as tough as them. That sure changed with cancer coming into my world. When my husband was going thru his fight, I still trained myself to hold those tears in for him...for a while anyway. I used to go into the bathrooms, hospital storage rooms...whereever I could find a space to let it out alone. I didn't want to feel the emapthy of another human..that made it all too real and I was still in the stage of hoping if I held tough, it would go away. Didn't happen with my husband, and it isn't going to happen with me. Cancer has forced me to look at so many things differently. It is funny how our human traits and learned behavior have us sometimes trapped in a bubble or on a hamster wheel. Faced with my own mortality has stopped that wheel and busted that bubble bringing every emotion to the forefront..ready or not. Forum buddy Dave mentioned stoicism...I don't think I'll ever master that practice, lol, but I am more aware of living in the moment and being present for what that holds...Thank you for the love and light which I am sending right back to you...hugs, M

mojogirl67

SandiaBuddy said:

Chemo

I am with you.  These are all very individual choices.  Death is inevitable, and how you live between now and then is strictly up to you. I think everyone here is operating in good faith, and your clarification of your values in this area will help us all to understand and respect your decisions better.

"Individual"

Thank you for the support ..We all come from different backgrounds and life circumstances that come into play in some form in guiding our choices and beliefs. The gift of life also comes with the gift of free will ,even if for some it is only in their thoughts. I respect every source of life and it's purpose in the balance of this sometimes crazy world.  Hike that canyon until' you can hike no more my friend...hugs, M

mojogirl67

Trubrit said:

Nothing should be taboo here on the forum

I have had a few complaints in my time, and thats fine. I speak my mind, hopefully with kindness but firmness. 

You speak your mind, and I appreciate that.  

I am still heartsick that you have to suffer so. After watching your husband fight and pass, it just doesn't seem fair. It isn't fair. But we all know, life isn't fair. 

You have my support whatever your decision. 

Tru

Nope, It's Not Fair

I keep referring to growing up as an only girl with brothers. I can remember saying "but that's not fair" when they got to do something and I didn't because they were "boys"..lol...No, my dear Tru, life is anything but fair. But it can be good, sweet, wonderful, crazy, scary, sad, funny, UNPREDICTABLE, and so much more...It is just life doing it's thing. The sun will come up and set no matter the tears, sadness or loss we experience. On one side of this crazy world, someone will pass and the tears and sadness will come while on the other a beautiful child will enter this crazy world to the tears of joy and thankfullness full of possibilities of who they could become and be. Yet, at some point, that sweet precious life will come to the end of life in that cycle. How that happens and what comes along the way is the wonderful gift we are given if we can only step aside and see it. That is what I have tried to do everday but fail sometimes. I am human but sometimes, the last person to realize that is me. Cancer has helped me with that lesson so for that I am grateful. Oh, how I could mull over a million thoughts here with my pot of coffee but I won't ramble anymore. You are a "rock" star in so many ways dear True. Solid and never failing to lift up. Much love and huge hug to you always...M

mojogirl67

airborne72 said:

Drive on young lady.  You

Drive on young lady.  You express clarity of thought and purpose.  I respect and admire your assessment of the situation and your courage.

We only have the moment in which to live.  You underscore that in your activities (with loved ones) and your desire for quality of remaining life. 

All forms of cancer are insidious, but CRC is such a thief, attempting to rob us of both our health and dignity.  Thank you for sharing your decision.

Jim

Sliding Around The Curves

Thank you for taking the time to send a note. I inted to live this life "running like I stole it"..lol.  Courage?  I feel like the whimpy lion in the Wizard of Oz who jumped at everything and cried all the time..lol...I sure wish I had Dorothy's magical slippers. I'd click my heels three times and make cancer disappear for all of here. Huge hug your way...M

zx10guy

I fully understand where you

I fully understand where you're coming from.  When my CEA spiked to 52.6 in October, I started going through the decision process of whether I would go back on chemo if something was found.  I know it was premature to think down that path even though I haven't gone through the extra scans.  I was leaning on to the decision not to go back on chemo.  As you said, this is a very individual decision.  And no one should be passing judgement on what a particular person decides.  There are the fortunate ones who sail through chemo with no side effects.  And there are those that are not fortunate where they have severe side effects or even worse an allergic reaction.  I fell into the spot beyond average towards having more severe side effects.  The memory of how horrible I was feeling is enough for me not to want to go back on it again.  And this time around, I don't really have anyone that is an SO to help me through this.

This topic is also why I hate with a passion the description of us being cancer warriors or there is a battle.  Because the connotation of someone who has just had enough and doesn't want poor quality of life as being a loser or lost the battle, is not fair.

SandiaBuddy

mojogirl67 said:

"Individual"

Thank you for the support ..We all come from different backgrounds and life circumstances that come into play in some form in guiding our choices and beliefs. The gift of life also comes with the gift of free will ,even if for some it is only in their thoughts. I respect every source of life and it's purpose in the balance of this sometimes crazy world.  Hike that canyon until' you can hike no more my friend...hugs, M

Hiking

I tell people that I am going to hike as often as I can for as long as I can.  Some understand, some shake their heads.  I will be heading out again next weekend for hopefully a less snowy hike!  To me, life is for living!

PhillieG

The Choice

Talking about our deaths has never been very popular here. I can understand why to an extent, but everyone dies. We just happen to have had a wakeup call which is something I feel wasn't all bad. 

It's a personal decision many of us will face sooner or later. I'll probably succumb to it at some point as well. That being said, I'm not sure if I am taking your comment out of context. "NO ONE could give me any certainty about the odds. No matter how many medical articles, latest research, patient accounts..etc that I read, there were no guarantees or certainties from the doctors guiding my care. They are learning as they go, same as we unfortunately have to." 
Did you expect to have certainty or a guarantee? Personally I'd be very cautious of any doctor who did give me a guarantee unless they said that someday I will die. 

The only time I was given a time limit or expiration date was when I was first dx'd in Feb 2004. My onc at the time gave me less than 1 year. I immediately got a second opinion and was told by a doctor at MSKCC that "we can work with this" which is all I needed to hear. So in Feb 2020, it will be 16 years that I've been taking chemo. No NED, No DEAD. While I'm not as active as I used to be, I am 62 and the disease takes a lot out of me. Still, I manage to kayak in the nice weather. 

IF I had to start all over with the surgeries etc right now, I'd have a tough time deciding if I would go through all of it again. Time will tell, I don't care for projecting far into the future.

Only we know when we've had enough. I just wanted to share my experience with others on here because I think it's important to get various views.
Be well,
phil

 

mojogirl67

PhillieG said:

The Choice

Talking about our deaths has never been very popular here. I can understand why to an extent, but everyone dies. We just happen to have had a wakeup call which is something I feel wasn't all bad. 

It's a personal decision many of us will face sooner or later. I'll probably succumb to it at some point as well. That being said, I'm not sure if I am taking your comment out of context. "NO ONE could give me any certainty about the odds. No matter how many medical articles, latest research, patient accounts..etc that I read, there were no guarantees or certainties from the doctors guiding my care. They are learning as they go, same as we unfortunately have to." 
Did you expect to have certainty or a guarantee? Personally I'd be very cautious of any doctor who did give me a guarantee unless they said that someday I will die. 

The only time I was given a time limit or expiration date was when I was first dx'd in Feb 2004. My onc at the time gave me less than 1 year. I immediately got a second opinion and was told by a doctor at MSKCC that "we can work with this" which is all I needed to hear. So in Feb 2020, it will be 16 years that I've been taking chemo. No NED, No DEAD. While I'm not as active as I used to be, I am 62 and the disease takes a lot out of me. Still, I manage to kayak in the nice weather. 

IF I had to start all over with the surgeries etc right now, I'd have a tough time deciding if I would go through all of it again. Time will tell, I don't care for projecting far into the future.

Only we know when we've had enough. I just wanted to share my experience with others on here because I think it's important to get various views.
Be well,
phil

 

Not Out Of Context At All

You understood exactly what I wrote. NO ONE could give me my expiration date and no one ever will. Seeing 1-3 years with treatment in my progress notes was something my oncologist never stated to me. He does not know. By no guarantees, I refer to treatment. It is a crap shoot at best. However, many of the physcians I have dealt with on this path for both myself and my husband will stand behind chemo when asked what they would do or try. It seems there is little consideration for much else in terms of treatment regardless of the numerous accounts of patient complaints and misery in regards to chemo. It is what is pushed by the medical arena even as a "pallative" treament. You make an interesting point I have read and heard repeatedly..."If I had to start over, I would have a tough time deciding if I would go thru it all of it over again"..The will to live is a stong motivator for many things we think we could never do or get thru. I respect each individual's decison and right to choose what is right for them. My own personal choice is not to spend the quality time I have left on infusions that (for ME), may keep my physical body alive a bit longer but destroy my spirit, heart and soul from the inside out. It is a hard call to say no to something being offered when your life is in the balance and you just don't know where to turn. All you want is someone to "fix it" or give you hope and more oft than not, most patients don't advocate for themselves and put total trust in a white coat. There is a balance in trying to "fix it" and arming yourself with as much knowledge and insight as you can on your own. I just don't choose to leave my life choice in the hands of someone else. Life was given to me as a precious gift and I intend to treat it that way right down to my last second and my last breath...hoping you find peace and strength to continue your fight on your terms...M

Lovekitties

Choices

I was diagnosed just about 10 years ago with a rectal tumor.  I was offered radiation and chemo to shrink it before surgery to try to save from having a colostomy.  I chose surgery.  My doctor really wanted me to consider chemo after surgery, but I opted not to...after all I was 62 years old and my life situation was such that I didn't want to become dependent on others to help me long term, plus I had no health insurance at the time.  Now, 10 years later I am still here.

3 years after my diagnosis my sister was diagnosed with cancer of the uterus, which had spread to her lungs.  She had surgery to remove uterus, but there was no surgery for the lungs.  She was uncertain about chemo but without it there was not much time left.  I told her she could give it a try and if it proved too much for her she could stop.  That was what she opted for.  About 18 months later she died.  While those 18 months were not always easy, she got to see her last grandchild born and have a nice vacation at the beach.

The adage about not judging others until you walk a mile in their shoes is so apt here.  Each of us has life circumstances that impact our decisions.  All we can hope for is that each of us makes the best possible choice for our own self, without regret.

May each of us make the best of our time here on earth, regardless of how long that is.

Hugs,

Marie who loves kitties

Butt

I am not going to judge your deduction in anyway how to persue. Please forgive me for my typos Because I do it from my phone. There are a few comments I would like to make. I do not believe in big pharma because other countries gave a different meducal system and as a dual citizen I could go to EU for my treatments but they don t have much for me. Yes, docs not always promptly return phone calls. They need need to have some balance in their lives and there is such a thing as physical exhaustion. It has nothing to do with chemo. A lot of paper work and demands from administration that has nothing to do with medicine in a direct way. Possibly family who wants more attention. A bagging feeling of a law suit that is a must to have constantly in your background. Periods of an extensive lack of a sleep when you have to make a fast desicion in sometimes in odd hours. If you start do it wrong you will not only have to explain it to a patient or a lively board when you deal with another set of doctors who have a direct expertise in your area. Not pleasant you better not mass anything up. There is a standard of care and if there us a need for a follow up point meant there is a standard of care. It must be followed with deviations that you brutally taught about and trained in. Again, you need to avoid a legal matter. No need to go into details. Has nothing to do with a house or sport cars. Do docs write fake reports? hardly ever happens. A nurse can overhear something and report you and a matter of fact they in a very strong majority took the Oath. It is a very big deal after all that brutal education.  They went into this profession not because they want to screw patients. Over a course of many years I never lost it at work. I did about a month ago. A rather problematic doctoral student who had issues in several departments asked about her study plan in 2 years. I told her I will be retired by that time. They don t know about my health issues. She told me that know I know you why you don t care (according to her). I stood up, opened the door and asked to leave. I cried hysterically for 20 min. Things were put on hold. It is something that very deep in my heart I took as an insult. It was a hit below my belt. Butt. 

mojogirl67

Butt said:

I am not going to judge your deduction in anyway how to persue. Please forgive me for my typos Because I do it from my phone. There are a few comments I would like to make. I do not believe in big pharma because other countries gave a different meducal system and as a dual citizen I could go to EU for my treatments but they don t have much for me. Yes, docs not always promptly return phone calls. They need need to have some balance in their lives and there is such a thing as physical exhaustion. It has nothing to do with chemo. A lot of paper work and demands from administration that has nothing to do with medicine in a direct way. Possibly family who wants more attention. A bagging feeling of a law suit that is a must to have constantly in your background. Periods of an extensive lack of a sleep when you have to make a fast desicion in sometimes in odd hours. If you start do it wrong you will not only have to explain it to a patient or a lively board when you deal with another set of doctors who have a direct expertise in your area. Not pleasant you better not mass anything up. There is a standard of care and if there us a need for a follow up point meant there is a standard of care. It must be followed with deviations that you brutally taught about and trained in. Again, you need to avoid a legal matter. No need to go into details. Has nothing to do with a house or sport cars. Do docs write fake reports? hardly ever happens. A nurse can overhear something and report you and a matter of fact they in a very strong majority took the Oath. It is a very big deal after all that brutal education.  They went into this profession not because they want to screw patients. Over a course of many years I never lost it at work. I did about a month ago. A rather problematic doctoral student who had issues in several departments asked about her study plan in 2 years. I told her I will be retired by that time. They don t know about my health issues. She told me that know I know you why you don t care (according to her). I stood up, opened the door and asked to leave. I cried hysterically for 20 min. Things were put on hold. It is something that very deep in my heart I took as an insult. It was a hit below my belt. Butt. 

Exceptions To Every Rule

Butt, my disappointment with the medical arena isn't targeted against physcians specifically but on our system as a whole. Is it better than most? Sadly, yes but that still is no excuse for what transpires everyday. Human life should not be held in the balance of the almight dollar. Cancer treatment and cancer patients are a gravy trail for insurance/pharmecutical companies and it is milked for every red cent. With all due respect but also with eyes wide open inclusive of being a care giver, a patient, and a former employee of our healthcare system in the US as well as just bein a compassionate human being full of empathy for others and the utmost respect for the gift of life who will always call it like I see it......just MY own beliefs and personal opinions which I am fully entitled to express and will until the day I draw my last breath on this earth...

 Peter Glidden, BS, ND, brings up the relationship between cancer and monetary profit. Glidden, author of The MD Emperor Has No Clothes, cites a study published in the Journal of Clinical Oncology, which found that over a 12-year period, chemotherapy did not cure adult cancer 97 percent of the time. “Why is it still used? There’s one reason, and one reason only, “Money.”He points out that while doctors don’t get direct kickbacks for prescribing most medications, chemo drugs are unique in that the doctors purchase them from the pharmaceutical company and then sell them to patients at a profit.

“Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of,” Glidden says. “The only reason chemotherapy is used is because doctors make money from it — period. It doesn’t work 97 percent of the time. An Australian study looking at the contribution of cytotoxic chemotherapy to 5-year survival rates in adults with malignancies found that the “overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA.” In their conclusion, the researchers stated: “it is clear that cytotoxic chemotherapy only makes a minor contribution to cancer survival.”

He cites this issue as just one example of a so-called healthcare system that prioritizes profits over human wellness.“This is the tip of the iceberg of the control that the pharmaceutical industry has on us,” says Glidden. “Medicine in the United States is a for-profit industry. 

Dr. Leonard Coldwell shares a similar perspective, calling chemotherapy “the Agent Orange of the medical profession.” “If you have a garden with flowers and bushes and trees and grass, and some weeds, you come with Agent Orange and kill it all off, and now it’s all dead, and you hope only the good stuff is coming back,” Coldwell says. “They bombard the entire system and then they say the cancer is in remission.”

He notes that statistics on the effectiveness of cancer cures refer to survival rates after five years. “You killed basically every bioelectrical and biochemical function in the body,” he says. “Since nothing works anymore, for three years, you have no cancer, you’re cured. You’re just dead in five years.”

Annabelle41415

Choice

That is one thing we all have is "choice."  No one can feel exactly as you as we are all different and our circumstances are different.  You experiencing the same disease that your husband had is unbelievable.  You are the only one that has the decision to move forward with the rest of your life.  Wishing you the best in your decision moving forward.  It sounds like you have had much thought about it already and I'm sure that you will make the right decision for you.

Kim

zx10guy

The sub topic of the medical

The sub topic of the medical system is a very heated, emotional, and controversial topic.  I won't go too much into this as I don't want to derail this thread for mojo as this is her thread.

I've always maintained that it is absolutely criminal for health insurance companies to be publically traded on the stock market.  To think there is any clear separation between coverage decisions and stock holder profits is foolish.  What this means is coverage decisions are often made based on what will maximize profits and not what is best for the patient even factoring in managing costs.

At one point, I was considering going into med school.  I've taken a class required by pre med students.  From my own myopic view of how doctors are groomed in the beginning, there is a lot to be desired.  This also fuels my disdain for many doctors along with my time being a first responder dropping patients off at the ER.

With all that said, there are some geniunely good doctors out there.  My primary care physician did not screw around when I presented with problems and a positive FOBT.  He immeidately ordered a GI specialist follow up.  My GI doctor didn't screwe around and I had a colonoscopy at the age of 42.  When a 3cm mass was found, he didn't screw around and immediately ordered a STAT CT scan which I had the next day along with locating a CRC surgeon who would see me immediately.  The CRC surgeon I saw two days after my colonoscopy didn't screw around and scheduled me in for surgery 7 days after my colonoscopy.  It would have been sooner had Christmas and the weekend didn't fall in between.  He also put sent me to a colleague of his who is a liver specialist due to two lesions found from the CT scan.  I saw this doctor the day before my surgery and he postponed his vacation trip of which he was going to leave the day of my surgery to be in the OR to biopsy the lesions and if necessary do a liver resection.  Other than my general practitioner, none of the other doctors have had any history with me yet moved mountains to make sure I was taken care of.  My current oncologist has been great.  When I went to him for a second opinion, he gave me his cell number to contact him if I had any questions or concerns.  This was at our first consultation and again no prior history with him.

As to the big pharma and all the negative feelings towards them, much of this needs to be tempered and taken into context.  There is a member on another colon cancer forum who was working in the pharma industry.  His wife died from colon cancer.  He was on the boards providing both his expertise as a drug professional and also needing support from all of us who know all too well his situation.

And I bring this person up as a distinct talking point related to big pharma.  Tom Marsilje.  Here is a man who worked as a cancer drug researcher/developer for Novartis.  On the day the drug he was developing for lung cancer was approved by the FDA, he went in for a colonoscopy and was diagnosed with colon cancer.  He started off as stage 3 and ended up having a recurrence.  He moved to being an activist for us and put up a blog about his cancer journey along with providing information about current treatments and the promise of future treatments such as immunotherarpy.  He was able to put complex information into a way even a layperson could understand.  He helped develop a clinical trial tool with another person who is active in two colon cancer support forums so people can more easily locate trials that could be beneficial for their situation.  He did this because he said even with his expertise he found sifting through the current trials website to be daunting.  When he passed, it was a huge punch in the gut for all of us.  He was optimistic to the end and never let up in presenting himself as a strong advocate figure for all of us in this community.  Those of us on Colontown mourned his loss for days/weeks/months.  Even to this day he is commemorated on Colontown.  I bring Tom up as an example of someone who worked in big pharma, who suffered from the same disease we all have, and still found the strength to continue to help contribute to the greater good.  I suspect there are other Toms out there in the big pharma world; although there will never be another Tom.

Here is his blog if anyone is interested in reading his legacy:

https://adventuresinlivingterminallyoptimistic.com/

 ETA: Tom was also interviewed for the PBS documentary on cancer called the Emperor of All Maladies.

abrub

Lots of good points here

And the decisions are very individual.  After my Folfox+Avastin chemo in 2008, I swore I'd never do chemo again. My family knew that quality over quantity was how I wanted to live (and still do.)  However, a few months ago, my cancer came back with a vengeance and I agreed to try Folfiri+Avastin, which I am tolerating extremely well.  And it looks like I'll be on chemo for life; shortly dropping the irnintocan, but staying on 5FU + Avastin after that.  Breaks will allow me to continue to travel, and at the moment, my life is pretty normal, and I have no limits on activities (except when hooked up to the pump).  At this point, it's an inconvenience.

However, if quality of life is diminishing because of chemo, I'll reconsider.  I want to live, not merely exist.  My doctors are all on board with me.

Others choose living as long as possible.  You have to make the decision that is right for you and your family.

Thanks for bringing this to the table.

Alice

abita

abrub said:

Lots of good points here

And the decisions are very individual.  After my Folfox+Avastin chemo in 2008, I swore I'd never do chemo again. My family knew that quality over quantity was how I wanted to live (and still do.)  However, a few months ago, my cancer came back with a vengeance and I agreed to try Folfiri+Avastin, which I am tolerating extremely well.  And it looks like I'll be on chemo for life; shortly dropping the irnintocan, but staying on 5FU + Avastin after that.  Breaks will allow me to continue to travel, and at the moment, my life is pretty normal, and I have no limits on activities (except when hooked up to the pump).  At this point, it's an inconvenience.

However, if quality of life is diminishing because of chemo, I'll reconsider.  I want to live, not merely exist.  My doctors are all on board with me.

Others choose living as long as possible.  You have to make the decision that is right for you and your family.

Thanks for bringing this to the table.

Alice

You got a recurrence 11 years

You got a recurrence 11 years later? I am so sorry. 

abrub

abita said:

You got a recurrence 11 years

You got a recurrence 11 years later? I am so sorry. 

Actually, first recurrence was 9 years later

But I didn't need systemic chemo until it came back for the 3rd time in a short period.