Got my mojo working, but it just won’t work on you / Got my mojo working, but it just won’t work on you – Muddy Waters
Having finished my major treatments for Stage IV ovarian cancer and Stage III breast cancer, I’ve been poisoned, chopped up and burned. And here to tell the tale. Based upon my experiences with two very specific cancers, here’s what I offer to anyone interested or who might be facing a diagnosis.
State of Mind
For my cancers, I have an illness, I’m not sick, although I was very sick at the point of diagnosis. So I had to make a decision about whether or not I wanted to live, because for me, living meant I had to go into treatment. Not living like bag it all and go to Italy. Too sick for that.
So I had to consciously think about what was facing me and how I was going to deal with it. You do have choices here. However, even with forethought, you really have no idea what lies ahead, what treatments will be like for you, so you really don’t know anything until you start doing something about having the cancer. But for me, sick as I was, it was too late, I’d made a decision and the life force took over and I was doin’ it. And after 3 chemo treatments and a lot of fluid draining, lots of vomiting, weakness, dizziness, weakness, did I say weakness?, I started to feel better.
Cancer is not for sissies, it takes strength of mind and spirit, trust, belief, faith, and humor, mostly all at once, all the time. Some days will be better than others, but that’s how life is. You have to keep remembering that and this too shall pass (please, hurry up), and other people have it worse (true, but who cares?) and I really, really don’t hate my life and want to die even though I do, so stop telling me I have to eat. I. am. not. hungry. Like that.
If you feel all those things and still want to dress up for chemo, that’s a good indicator that you’re really doing okay. You might be able to rock the bald but hate your life because you can’t wear your platform wedges (that was me). These are all good problems to have, relatively speaking, and shows your mojo’s okay.
If you find you just can’t cope with having cancer, there are doctors and medications to help you get over depression and anxiety. There are social workers and advocates to help you with almost any issue, physical, emotional, or financial. Unless the reality is totally against you, and you are too ill and too sick, choose life. That doesn’t necessarily mean choose treatments. It just means choose to live. You might be very ill, but not sick and would rather not be chopped up, poisoned and burned. Time for bungee jumping then. What have you got to lose?
If you’re on Medicare and have cancer, if you don’t have a good Medigap policy, get one. At least in NY where I live, you can switch over even if you’ve had an Advantage plan for a year or two. The money you spend on monthly premiums will more than offset the out-of-pocket expenses of co-pays, deductibles and co-insurances you have to pay if you go to the doctor often as one tends to do with active, or even inactive cancer.
If you’re not old enough for Medicare, but can’t work due to your illness, look into Social Security Disability. Social Security Disability comes with Medicare (after a two-year waiting period) or Medicaid depending upon your financial circumstances.
Make sure you love your doctor, that s/he is committed to your survival, as this is crucial to it, but love yourself more and be prepared to move on if something changes in your relationship.
If the first words out of his/her mouth are, “You have an X% of living,” even if you’ve asked the question, find another doctor. The answer should be something more like, “While you’re very ill, we have many treatment options available. The statistics say, if you did nothing, you could have xxxx to xxxx time available, but you’re not a statistic and your outcome could be very different.” Your doctor should be on your side, rooting for you to survive as long as possible, willing to work with you, your goals and belief systems within reason.
And no, your doctor isn’t just in it for the money and doesn’t want cures to be found. His mother, father, aunt, uncle, wife, sister, whoever is most likely touched by cancer too. Yes, being a doctor is his or her job, but they’re in it to win it for you, trust me.
And if you feel that’s not the case, this is America, go find another doctor, stop whining. If you just want to be cynical, that’s okay, but I’ve found while fighting for my life that it isn’t the time to cop an attitude and believe me, I’ve got p.l.e.n.t.y of attitude. As a patient, you’re not dealing with an establishment, you’re dealing with people–doctors, nurses, technicians, social workers, etc.–who are as frustrated as you are with the limitations of medicine. Maybe more so as they see it every single day with stories sadder than yours and mine.
Once you find a doctor, chances are you’re going to spend less time than you like with him or her at each visit. So don’t waste his and your time discussing treatments that involve mice or petri dishes. S/he wants to help you now. Most rumors you hear about the latest “cure,” even if they turn out to be true (most don’t), are years away from being approved. Also, most conventional doctors’ eyes will glaze over at the mere mention of anything other than pharmacological therapies. Understand that, don’t hate them for it, that’s what they do, and it has its place, but if you want something else, be prepared to do your own research.
This will depend upon the type of cancer you have, but for ovarian cancer, I would say this about choosing doctors/hospitals:
- If you’re young, have a lot of resources and support, I would urge you to go to the very best facility to have yourself treated. What you get in major cancer centers is access to clinical trials. While the jury’s out on whether or not they actually improve outcomes, many people live for clinical trials. If that’s you, go a major cancer center. And for younger people who have both more to lose and gain in terms of survival, access to a clinical trial could be life changing for them.
- Every woman suspected of having a gynecological cancer should have a gynecologist/oncologist. This will probably involve going to major cancer center or a teaching hospital. They will typically do the debulking surgery required in almost every kind of ovarian cancer to reduce the tumor burden either before or during chemo therapy. This is a relatively rare type of cancer, you need a doctor who sees it frequently, can react to it with knowledge and experience and just as importantly, isn’t intimidated by it. They can see an abdominal cavity filled with cancer nodules and be optimistic, unlike another surgeon or gynecologist who has limited experience and will tell you to go home and put your affairs in order. There’s a time and place for that but not usually right around diagnosis, even an advanced one.
- If you’re older with less stamina and money, hate to be blunt, but this is a reality with cancer, you might want to stay local as much as possible, as going to as many doctors as I’ve had to, is exhausting in and of itself. I see a gynecological/oncologist in NYC for surgeries and checkups, everything else is done locally. I can’t even imagine having to schlep into the city the easily 75-100 times I’ve been to my oncologist the past 17 months for most of what is just routine. And I LOVE the city, going to the city, driving in the city, and I still can’t imagine having to go weekly just to have someone draw blood or give me an infusion. My doctor works with my gynecological/oncologist in the city, so I’ve got the best of both worlds.
- With my cancer (low grade serous), there’s no treatment anyway, which isn’t to say it isn’t treatable, but it’s more of a crap shoot than dependent upon the world’s leading expert. I haven’t yet heard that 15,000 women a year die from ovarian cancer except those who go to Dr. So and So.
- Cancer is a balancing act. You have to weigh everything, including not only how to fight it, but when, where and with whom. If you can’t keep up with treatments because you can’t afford them or are too tired to travel, what good is going to a major cancer center? You can usually get the same treatment at home. Just make sure your doctor follows the major protocols. Having said that, though, treatment protocols for my disease change like Kim Kardashian changes her clothes. Be aware of what’s going on in your cancer world, but every doctor will have his or her opinion, and who’s to say who’s right or wrong when there’s no definitive treatment. My chemo wasn’t supposed to work (4% chance). It did. See next sentence about statistics.
Repeat after me, every morning: “Statistics are based on large groups of people and are not intended to predict individual outcomes.” Don’t rely upon statistics. They have no place in your cancer life. Everyone reacts differently.
No one, unless they have your disease, knows what you are going through. No one. Make some friends with cancer. It helps. Also teaches you not to isolate yourself and if you’re older, expands your network of acquaintances who could become friends.
Speaking of friends (family). You need support, not sympathy. Forget the pity parties, decide what you need from people and ask. Help with cooking, rides, company, whatever. I’m very independent, have a roommate, so I’m covered for the basics, but definitely need my friends/family to provide entertainment for me. This is what I need, so I ask and it is given.
The treatments may make you sick, but they are temporary. Some side effects are worse than others and could be permanent and disabling, but I would say most people don’t experience that. You will get better, regain your strength, grow your hair, improve your immune system. There are also things to help you with side effects. Your doctor knows some of them but other cancer patients have even more tricks up their sleeves. This is why having cancer friends, whether real or virtual is invaluable.
Don’t refuse treatment because it’s toxic and you’ve heard the myth that more people die from treatments than from cancer. Not true. More people have been helped by being poisoned, burned and chopped up than from spinach smoothies. But it doesn’t hurt to do both, and to always question whether the payoff from a specific treatment is worth going through it. Most oncologists are aware of the balance but need to know how you feel in order to know what to do for you.
Everyone else who’s doing conventional treatments, reduce your sugar, lose weight if the cancer and treatment isn’t doing that for you, start moving, and start with eating 1 fruit and 1 vegetable a day and keep notching it up. The alternate treatment people are doing this stuff already, in spades. You’ll feel better, be better, and it will never hurt you.
If you want to live but absolutely do not want to do conventional treatments for all the right reasons, not just because you’re scared, do realize that conventional treatments are the cancer world’s answer to popping a pill. This is MUCH easier than diet, supplementation, Budwig protocols, etc., etc. I say this not to discourage you, but to make you aware that bucking big pharma requires much more stamina, discipline, finding professionals to help you, out of pocket expense, everything. Just be sure you’re really knowledgeable about what you’re in for and very committed. This ain’t easy and there are no guarantees either.
I don’t NOT believe in alternative therapies. There’s a lot of anecdotal evidence to support that many people have benefited from them. The body is too wondrous a machine not to be capable of spontaneous healing under the right circumstances. I just don’t want to count on that. And I’m more of the belief that in order for any treatment to work, whether it’s alternative or conventional, it’s got to be right for the task at hand, and I think THAT’s the crap shoot. It’s finding the right one. I think you have to go BIG with either. Not just change your diet, you’ve got to change your life. Profoundly. So big that it actually alters your biochemistry. Not just by not eating sugar. That’s where I’m skeptical. To me it’s no mystery that seeing John of God, for instance, can help people. But I don’t think it’s John of God per se, it’s the spiritual, physical, emotional, and psychological transformation it takes to travel there, believe that, do whatever you do that alters you so profoundly that it could possibly eliminate your disease.
Be kind to people, and nice to those who help you. Don’t whine or act like a victim. You have an illness, there’s most likely a great deal of help for it, you still have your family, friends, a roof over your head, heat in the winter, a/c in the summer, etc. In other words, while it feels like a tsunami hit you, it really didn’t. Those take away everything, including loved ones.
Our society, in order to sell things, makes cancer out to be a death sentence. While cancer in the aggregate is deadly, many specific cancers aren’t and the truth is heart disease still kills more people and we hear virtually nothing about that. Nor it is exactly a lifestyle choice as the PR machines for the major cancer centers would have you believe either.
Somewhere between death sentence and lifestyle choice, there are a growing number of people living with and despite cancer now more than ever before due to earlier diagnoses and better treatments. They work, raise their kids to see them graduate or marry, or have their own children, they go on trips, do the carpool. They have fun, sometimes forget they have cancer, go shopping, have sex, divorce, marry and remarry, move, obsess over the Iphone, scuba dive, run 10K races, paint, write, continue to spend too much money and yell at their kids. Life goes on.
Just “Fight like a girl!”