Response to a metastatic cancer patient

1. Do I quit chemo and go the natural route and hope that my tumors are slow enough moving that ?

2. Do I keep doing the chemo that I hate, and push through and do all the natural goodness along with it?

3. Do I look into clinical trials, and do the chemo that way, and along with it do the acupuncture and juicing and diet like I have been doing.

Tough one. I'm going to tell you what I do, but not make a recommendation.

I've repeated chemotherapy three times, and expect to repeat it in the future. I've fought HARD for a chemo that doesn't cause side effects I don't want. I'm currently on paclitaxel-NAB, which I know I have a response to, AND doesn't cause much neuropathy. (BTW, I understand that it's not the taxol drugs that actually cause the neuropathy, but the solvent - ie petrochemical, that they are delivered WITH. LOVELY. Taxols don't cross the cell wall very easily.) I have a very aggressive cancer cell, and think that western medicine is part of the solution for me.

I don't follow any sort of strict version of juicing and cleansing. I'm firmly convinced that cancer is an autoimmune disease, and that all the western meds exacerbate that - whack the hell out of your immune system, and then hope that you can come back from half dead. It's amazing to me that our systems are strong enough that we can DO this - not just once, but repeatedly. So anything I can do to boost my immune system during and between times, I do.

I try to listen VERY carefully to my body and it's cravings. Right now I crave fish and shellfish - and I'm dealing with brain mets. Omega-3 fatty acids! Strange trace minerals in shellfish! I ordered shellfish the other day at a chinese restaurant...and I ATE THE SHELLS. Pretty soon I'm going to be eating ants off the benches in the park, or something even more completely random. Whatever. If I really need formic acid, well, so be it. Lots and lots of exercise. I started ballet about three years ago, and age 42, and a year later started dancing on pointe shoes. I'm heavy, tired, and I have crap knees, and there is nothing in the world that will get me out of bed like Thursday's class, when I get to wear those magic pink shoes. I swear I should cover them with sequins as well - drag queen pointe shoes. Find some kind of dance or exercise that you adore, and can get completely addicted to.

I was diagnosed when my daughter was six. She is now twelve, and I was just diagnosed for the fourth time - second brain met, which we refer to as Brain Squid. (The first one was bigger, this is just a baby squid.) So I'm having gamma knife radiation for the second time in November. A certain amount of my decision making is based on my daughter, and her age. I will throw anything and everything available to me at this cancer beastie until she is 18. And recently survivor statistics for metastatic babes like us have gone way up. Instead of 3% alive after 15 years, we are up to almost 19 percent! Go team! So now instead of gunning for another six years, I'm going for at LEAST 15.

I also recently got in touch with Stanford, to look into clinical trials. (I live outside of Sacramento, so I have many fancy cancer centers nearby - Sutter, Stanford, UCSF, etc.) Not so much because I'm running out of options, but because there are few enough of us that are longer term survivors of MBC that I make an excellent guinea pig.

If I stop responding to paclitaxel, next things in line are Gemzar and heavy metals, like cisplatinum. Yick. But any of us who have survived with mets for more than two years are ALREADY beating the odds. That means you ALREADY HAVE figured out something that you are doing that the DOCS haven't. So most of all, trust your own intuition about what you need, and what you want. I also believe in getting advice before I decide, but once you've made a decision, ask for pure support from those around you, even if they don't agree.

Wishing you all the best,
grundoon

This is an odd node title because I read it two ways.

Grundoon writes as if the title means "What advice would you give a metastatic cancer patient?"

I read it as "How would you respond to someone who has metastatic cancer?"

And then I have multiple answers, depending on what hat I am wearing.

The doctor hat. The professional demeanor. Doctors are really trained to not break down in to tears, to not fall apart. It was not really discussed when I went through medical school and residency, so much as modeled. In second year medical school we dissected a cadaver, a real person, and you don't find out their name until the service at the end of the year. Ours was male. Sixty or older. He had cancer, metastases to his liver. Every cadaver was stored in an elevated coffin/vat of preservative. When we opened the vat, the body rose and dripped. When we took exams, the bodies were all up and the professors would stick pin labels in parts. What is this vessel, this organ, this nerve? We were used to our own cadaver and others would make our eyes run. We did not speak of the smell or how frightening it was. I am sure that we all thought about our person. Who was he? What did he believe? Was it the cancer that killed him or something else? Why was he generous enough to leave his body to teach us.

My second medical school rotation was pediatrics. And it was a horror show in a tertiary care hospital with children with cancer, children with rare liver and kidney diseases, children abused and neglected, or mysterious and tired of tests and blood draws.

I suppose I could go on and on. A counselor said to me recently that some patients are horrified by the doctor's disengaged calm when they deliver a cancer diagnosis. I delivered one last week and hugged my patient at the end and her daughter. I was so tired and worried and sad, but a little bit hopeful that it would be the treatable cancer by biopsy: we don't know yet.

The friend hat. Currently I can count at least 5 doctor families that have a cancer patient in the family. More. Gosh, isn't all this healing supposed to protect me from something? Store up pennies in heaven? It is not looking like it from here. And friends in the community and distant friends. It's the dance of intimacy. Really I do the same dance with each patient. What do they know? Are they a medical person? Do they want to talk about it? Are they confused about medical terminology or want to know why they were transferred to a hospital to cool their heels for 12 hours until the MRI was done? Do they just want to be silly and play and forget about it for a little while? And then I am part of that too, how much energy do I have left. I can run myself in to the ground and get sick. I think we each need time to rest, to play, perhaps whining is necessary and should be worked in, time to grieve, to be angry, and then, surprise, happy sometimes.

Don't try to hold on to it. Happiness. Laugh, cry, sigh and what will come next? For you or your friend.

I think that the most important thing is to stay present. A friend told me that when his friend was dying of kidney cancer, "Some people stopped coming around. They couldn't be with him. He was really hurt that people that he thought were good friends, stopped coming. But he was angry and sometimes it was hard to be around him." The friends get together each year, giving money to his childrens' college fund. Wouldn't it be easy to judge the person who wasn't there? But Rumi's poems say no. The poems say that people are where they are: the poem about the adult telling the embryo about mountains and fields and stars. The embryo says "I don't believe you. I only know what I have experienced." Rumi says that there are different stages in our lives and that we have to pay attention to the people we speak to, to have respect and knowledge of that stage. If I truly want to connect with my patient I have to listen very hard to who they are, what they know, what they are afraid of, what their questions are. I can't offer any healing unless I do make that connection. Unless they feel that I have listened and heard and answered. When we have both been present it heals me too.