Friday, February 17, 2012

Breast Cancer: 10 Shared Wisdoms from the Other Side of the Mountain

Finally, I am just about at the end of the road of treatment for that little lump I found in my breast, ooooh, about two years ago.  After chemo, radiation, surgery, MRIs, biopsies, and more, I get to hang up my hats, unpack my survival kits, and breathe a huge sigh of relief.  So somehow, it seems I should have something to say about all of this, some wisdom distilled from all of that fear, suffering, and surviving business.

While I may never completely relax with the specter of "Might it come back?" lurking, I do hope I'm done with the beast of breast cancer.  After all, my amazing oncologist uses the word "cure" about me, and I'm to schedule a final surgery to remove the port catheter that is a physical reminder of all I went through. So here I am, just on the other side of the mountain,  a little disoriented here in normal-life land. Still, while it's fresh in my mind, before I've wrapped up those memories of nastiness in puffy clouds of gauze and "put it behind me," I'd like to offer some help and information to anyone who might be just beginning their own, similar epic journey.  While I can't guarantee that this is profound wisdom, I can say that these are things I discovered in the climb up and the hard scrabble down, things that helped me ultimately, and that I wish I'd known before I started.

#1 is to surrender to the suck. Don't expect too much from yourself, do let yourself off the hook in every way, and realize that kicking cancer in the teeth is the ONLY job you have for a while.

#2 is to ask for help and be open to receive without embarassment the love and care of family, friends, doctors, nurses, and whoever else is there to help you.  Take people with you to your appointments, especially the scariest ones in the uncertain beginning or when something new is happening.

#3 is to realize that it's going to suck, but it's going to pass. Take the drugs, take to your bed, watch movies all day and night, eat what makes you feel alright. (For me, cheddar cheese was a blessing, strong enough to taste good with fried taste buds and overcome that chemo taste in my mouth.) Realize that sometimes it is going to be frightening, painful, and depressing, but that you WILL get it behind you.

#4 is to treat all symptoms right away, before they get worse.  In fact, once you learn your pattern of after effects following chemo treatments, you can take steps to head them off.  It's a lot rougher if they get out of hand before you treat them, so don't try to tough it out.

#5 is to find and use the supportive drugs that work for you. Don't be shy about letting your oncologist know if the first symptom-relief medications are not working well, and do keep communicating until you find what works best for you and your symptoms. There are many options, and everyone is different, so sometimes it takes several tries. Don't worry that you're being a difficult patient (which I did, at first), but realize that your nurses and doctors want to help you and have the knowledge to help you manage the symptoms. You may need to look elsewhere if you decide to try medical marijuana, which many find works better than anything else for nausea, diarhea, heart burn, and appetite, without druggy side effects. (One of my antinausea meds put me into a heavy, dizzy, sleeping state that I didn't like.) There are no gold stars for suffering more than you need to, so do keep working until you find what works best for you.

#6 is to let your children help you, if you have them.  Of course you want to protect them, but try to strike an appropriate balance for their age and personality between over and under sharing.  Being able to do things for you is good for them in many ways. They can make you a cup of tea, rub your feet and legs (that helped me tremendously), put lotion on your dry skin, light a scented candle for you (I liked citrus), or bring you things.  When I was very sick, I asked my girls to come sit on the bed and talk about all that was going on with them, and even if I couldn't respond much, I loved to hear their voices and feel their presence, and I felt good that they knew how wonderful, important, and loved they are to me, even though I could not be as involved as usual in their activities.

#7 is to be patient with your partner, and support them as much as possible, as they support you in such crucial ways. With the stress, hormone-effecting therapies, steroids, drugs, chemo fog, and physical suffering, I experienced some serious crankiness and lack of clear thinking at times. I think that understanding this and externalizing it can help, and so can the knowledge that it is temporary, even though not short.  Try not to say every rotten thing you feel like saying, because you won't mean it.  I still cringe when I think of some of my outbursts.  Offload as much as you can to others, even though it's easiest to go to your default caregiver with everything, and you'll have to on the worst days, but the rest of the time do reach out and do accept help from your friends, even if it's just to talk. (I say just to talk, but the listening ears and heart of a friend are a wonderful gift.)  Encourage your caregiver to do things for him or herself during this time, they surely need it.

#8 is to forgive yourself when you're not as brave, sweet-natured, strong, or positive as you'd like to be.  Your super hero cape may be in the wash.  You're still a great person.

#9 is to be unrealistically optimistic.  I wrote about this in an earlier post.  That doesn't mean that being optimistic is unrealistic, but that being optimistic doesn't have to be only based on facts and statistics (which only apply to large groups, not to any one person).  It is powerful and helpful, when you are able to do it. The pendulum swings between worry and hope, and you can't be positive every day, but an optimismistic perspective will get you through the minutes, hours, days, weeks, and months, and help propel you over that often brutal peak.

#10 is to laugh; laugh loud and often; laugh with all the people who are going through this with you.  Cry, too, when you need to, express your fear and anger, but let it turn to laughter whenever you can  Laugh at the ridiculous horribleness of it, laugh at the awkward things people say and do (without meanness), laugh at every incongruous, surprising thing you encounter, and it is amazing how much better you feel.  My husband is a riot, and I took him and my hilarious (and warm and loving) friend with me to many appointments, especially in the early scariest days, and this turned unbearably terrible moments into (believe it or not) largely enjoyable ones.  I could do an entire post about this.  Like waiting to hear just how bad the cancer is, and everyone but the doctor kept walking into the exam room -- "This is it!" "Oh, no, it isn't."  It became funny after 5 minutes, and became an hour of silliness, until the doctor finally arrived; the hilarity really took the edge off the sharp anxiety.

In my next post, I'll share the results of the massive amount of research I did about other things you can do for yourself to augment your main medical treatment, such as light exercise and several supplements that appear to have helpful effects, supporting you through chemo and radiation, and also fighting cancer.

Until then, hang in there, be optimistic, and tune into the love and light that surround you even in the darkest of times.

Fellow warrior,

Finding a bright moment, even in the toughest part of the journey. Summer, 2011, halfway through