Never, Never, Never Quit

Thank you, Craig. I know that was a difficult post to make.
When I read it to my wife tomorrow, she will cry...
because she will know that you understand her decision.

For the benefit of the viewing audience, my wife Lyn was diagnosed almost two years ago with a very rare form of bone cancer. The only treatment option was a complete resection of her C2 vertebra, accomplished by removing it intact(and the cancer within) through the back of her throat. Untreated the diagnosis was death within a year from cervical collapse.

14 months ago the surgeries began, she had over 30 hours of surgery in a three week period. After the last surgery, an aortal stroke led to the loss of the use of the left side of her body. Other complications eventually led to the loss of her colon. Lyn then spent 12 weeks in the neurosurgical ICU, 10 weeks in post operative care, and 4 months at a great rehab hospital.

She's been home now for months, and still needs a feeding tube for meds and nutrition. During the surgeries, they had to split her jaw open amd move her tongue to remove the vertebra. Some nerves got stretched, her soft pallate has shifted and her tongue has atrophied on one side. Despite the opinions of a few ENTs who said she'd never speak or swallow, she now talks clearly and eats limited amounts of her favorite foods.

So OK now, I've explained enough (and hopefully not too much) that you'll get my point. Lyn continues to improve, slowly recovering what function she can while coming to terms with how much she lost. She'll never walk again, and her dead limbs cause constant pain despite ever increasing dosages of pain patches. Her career as a Youth Counselor is gone. Only a few friends have kept in touch, even fewer visit.

But last week she sat unnassisted on the edge of her bed for 23 minutes. And yesterday she ate a few bites of chinese take out. And next week she'll be getting her first shower in 14 months, in our newly remodelled barrier free shower.

She doesn't quit. She lives by the mantra 'small steps equal big progress'. I am honored to be her round the clock care provider, and with a small group of state and HMO funded care providers we take care of her here, at home. But my point is still to come...

You see her cancer will be back. The average after a completely successful suregery like hers is about 3.8 years to recurrence. It's a genetic thing...And not only does she not want treatment, she refuses to even find out.
So at some point down the road home care will become hospice care, and Christian's views on nobility in the face of death will come to bear.

They are both right, of course. That's my point.

So Lyn will cry tomorrow when I read her this tomorrow, but it will be tears of happiness knowing that there are people like Craig and Chrisitan out there who do truly understand.

She is going through her own hell, and continues to go forward. I'm along for the ride, documentarian careus providicus.

Peace,
Gary Votour
gvotour@netscape.com

TCO,

I think your post is a very inspiring one, especially to someone who may have cancer and has a good potential to respond to treatment, but it also continues to neglect the issue of when cancer cannot be beat, as it is is in so many cases. I have read your blog for a while, and I agree with you on many points.

But in addition to courage to continue therapy, we must reinforce in our patients the ability to find wisdom and acceptance which contain as much nobility as courage. Patients with life-threatening illness must be supported in a way consistent with their values, and that deciding to stop aggressive curative treatments and the medical milieu that engulfs them, does not mean the patient lacks courage, has "given up," or to use your analogy built a house without a roof. When I work with patients and families going through the agonizing decision to change course in therapy, I let them know that it takes just as much courage to find the acceptance that more chemotherapy, radiation, etc, may not be what works for them. This acceptance of the harsh realities of life takes wisdom and courage as well.

(Disclaimer: As a hospice and palliative medicine doc, I realize that oncologists are not the enemy of hospice, or that they do not get that a patient is dying, etc, etc. I work very closely with a lot of oncologists and realize the patient-physician dynamic is so complex that I aim to work cooperatively and not antagonistically with oncologists. Some of my best friends are oncologists!)

Cheers and keep up the good blog!

Christian - www.pallimed.org

The idea that Dr. Sinclair suggested above that my oncologist ;ight also be in denial is to terrifying to think about. TCO, you speak in parables. It is fine when I need to hear you, but I need to be able to understand what I need to do and why. That is an almost insurmountable task, so when the chemo fog and denial only let me understand the sickness and the pain, tell me again and again

TCO -- I was most excited to see the title of today's post! Mr. Churchill�s quote is on a magnet that graces my refrigerator door (all the better for daily reinforcement). I've been on chemo for seven years for metastatic breast cancer. Although I usually feel really well, there is no question that I am going through an unending hell. But I decided a long time ago to take Mr. Churchill's advice. I will keep going.

Dr. Sinclair, I am unclear about what you are driving at. I have certainly accepted that my cancer will likely never be cured. However, through ongoing treatment, I've achieved remissions lasting over two years before progression begins again. Since my fate appears to be a foregone conclusion, are you suggesting that I just bag it now and quit wasting everybody's time and resources?

I don't think TCO is talking about patients who no longer respond to treatment, or are enduring an unbearably reduced quality of life. I think he is referring to the newly diagnosed and those veterans of personal wars against cancer that are physically capable and demonstrate a psychological determination to face the hell of what passes for medical treatment for cancer. TCO -- am I wrong?

Sorry if I've made this about me. I just tend get riled when I hear implications that those who are likely to have poor outcomes should reassess the benefit of continued treatment. I know where I stand. And I'm still standing.

I feel that I understand what Dr. Sinclair is saying. My dad died of lung cancer six months ago. While I am grateful that chemo gave him 2 years past his diagnosis, there was never any chance that it would be a cure. After trying 4 different regimens of chemo, each less successful than the last, Dad got sicker and sicker and died. His last chemo treatment was about 5 weeks before his death.

I was the doom and gloom gal in my family in that I was ready to discuss hospice before any other family members. As it turned out, I walked with my Dad up to that oncology office for the last time on a Tuesday, with him barely able to make it. I asked the doc point blank about hospice that day, in front of my shocked parents. We met with hospice on Wednesday morning, and just before midnight Thursday night, Dad was dead.

I don't blame the onc for continuing tests, chemo, and treatment for as long as he did. But after seeing it firsthand, I would not have that last regimen of chemo if it were me. It prolonged a very difficult period full of suffering.

Tracy, I am proud of your 7 years of survival. The fact is that many breast cancers have a FANTASTIC response to chemo compared to lung cancer. Nobody wants to deny you the treatment you deserve. The doc has more experience than the patient and may at times be better able to tell when it's time to throw in the towel rather than continue to receive the beating. Churchill's quote is great, but to "keep going" through treatment as you're literally suffocating is unneccessary suffering.

Just to clarify, this post is directed toward those patients who are forced to take rigorous (i.e. miserable) chemotherapy in an attempt to cure them of their cancer (as seen in lymphoma, adjuvant treatment for lung, colon or breast cancer, etc). I agree that palliative chemotherapy should not be given in excess.

Thanks for your perspective, Laura. I do appreciate it. My deepest sympathies for your father's and your family's suffering.

Sorry for the late reply everyone, I forgot I had posted a comment here.

Tracy, the point I was trying to make is basically when we always support one position (Go!Fight!Win!Be Aggressive!) the natural tendency is to view the other option in a negative sense (You lost!You didn't fight hard enough! You quit!) (The Iraq war would be one non-medical example). The words you choose ("...just bag it now and quit wasting everybody's time and resources") demonstrate my point. It should never feel like quitting when someone makes a thoughtful decision to change from aggressive curative treatments to palliative ones. There can be hope and relief in not focusing solely on disease on treatments. I encourage you to keep being aggressive and resilient as long as that is what you feel is in your best interests. My friend (an oncologist) makes a good point when he notes that all the survivors he sees in his onc clinic are 'fighters.' He doesn't have anyone still amazingly alive, who kind of just said 'whatever.'

TCO, thanks for clarifying the point of your post. I kinda had that feeling that this was for how to psychologically tolerate chemo even when the symptoms are rough and the outlook is favorable.