May the Odds Be Ever In Your Favor

The odds are not always in our favor.  Back in 2007 when I was first diagnosed with breast cancer, my oncologist went over my pathology report with me and told me that, if I did surgery, chemotherapy, radiation, and hormone therapy, I had a 40% chance of surviving, disease-free, for 10 years.  While those are not the absolute worst odds, they certainly are not the best.  Still, I fully intended to be one of those 4 in 10 who beat the odds, so I followed every recommendation and was totally optimistic that I would be throwing a party on my ten-year anniversary of being cancer free. I only made it eight years.

Sometimes optimism is not rewarded, but is that really a problem?  Would my life have been any better had I been anxious and nervous about a recurrence over the last eight years? What good would the worry have done?  What possible benefit would it have given to my life? I can't really think of any, so optimism tends to be my default position.  I always assume things are going to work out, until they don't work out.  And even when they don't work out, I still somehow assume that they will, eventually, work out.

I have to be honest and tell you that the odds are, once again, not in my favor. If you had seen the first PET scan I had at the beginning of the year, you could be forgiven for thinking some dark thoughts about my prognosis. A PET scan works by having the patient drink a bunch of glucose solution. Cancer cells love glucose, and they draw it in quickly.  Then the patient is injected with a special dye that has radioactive tracers in it.  Those areas that absorbed a lot of glucose, mainly the cancer cells, will glow brightly in the imaging result from the tracers. I had an awful lot of very bright spots. Too many to count. My scans looked a bit like a Christmas tree.

I had another PET scan on Tuesday to assess the effectiveness of my treatment so far.  I don't know what the scans will say. Although my tumor marker numbers have been going down rapidly, the odds are still stacked against me. I don't know too many other people who have had a total response after just 12 chemo treatments.  My oncologist has already hedged her bets by scheduling me for a Taxol infusion this week when I go in for my Herceptin and Perjeta infusions. She can always cancel it but she knows that the odds are that I will probably have to go a few more rounds of the weekly Taxol. I know of some women who have had weekly Taxol infusions for 5 to 6 months or more. I know that some women never reach remission.

I can't say that I haven't had some "scanxiety", but I also believe that our bodies listen to what we tell them. I think our minds are more powerful than our bodies. So I've been telling my body that I am strong, I am healthy, and that I feel great!  And you know what? It mostly works! Just try yelling it out to yourself right now with gusto and sincerity! Don't you feel just a little better? Personally, I find a good fist pump to be an especially convincing addition.

I'm ignoring the odds. I'm going to keep telling myself that everything is going to be OK. Because no matter what happens, it usually is.

Numbers are just Numbers

I got my CA27.29 tumor marker numbers last Friday, and I was pleased to learn that they went down further to 141.  That's down from a high of 850 when I started. I also had another tumor marker called CEA that was tested. The normal range for this marker is 2.5 or less, but I started at 48.1, and now the number has dropped to 7.6.  It's all very good news with both numbers dropping by about 85% from the beginning.  But I guess I'm getting greedy as I really wanted to see my numbers even closer to normal. Isn't it funny that just a few weeks ago, I was thrilled to have seen my CA27.29 numbers drop to 408.  But now I'm sort of disappointed with 141. We always want just a little more, don't we?

There are lots of possibilities for why the numbers aren't yet in normal range, and that's why the markers alone are not used for diagnosis or treatment decisions. What I need to focus on are all the obvious signs that cancer is retreating. I need to remember where I was just 11 weeks ago.

In those early days just after my diagnosis, I was feeling pretty weak as the tumors in my lungs must have been growing pretty quickly. They caused me to be seriously short of breath and susceptible to terrible coughing jags. We were up at a friend's cabin near Lake Superior over New Year's Day, and I took a walk up to a scenic ridge that has always been a favorite spot for me. I had to stop several times on the way up to catch my breath and let my energy rebuild. It took me twice as long to reach the ridge as it normally would, but I needed to get there just to prove to myself that I could still do it. Standing on top of that ridge, looking out over the deep dark blue of Lake Superior, I tried to be positive, but I felt a bit apprehensive over what the year would have in store for me. I knew I would be starting chemotherapy soon, and I knew from past experience that it probably wouldn't be easy. I already felt pretty lousy, and I wondered if I would ever feel really good and really strong again.  

I was reminded of that moment this past weekend. We were at our friend's cabin once again, and I found myself climbing that very same ridge. Even though it was a Saturday afternoon, which is usually my point of lowest energy during my chemo cycle, I didn't have to stop once. I reached the top with a smile on my face as the sun shone down on me through the pine trees, and I felt an enormous up-swelling of joy and gratitude as I gazed out at the sparkling blue lake. I realized that it didn't really matter what the numbers were, because what really matters is how I feel. I'm still not in perfect shape. I still have some weird tightness in a couple of spots in my lungs, and I still have a bit of pain where my liver was biopsied. I still have a bunch of scraggly fuzz for hair, and I still have a weird metallic taste in my mouth from chemo. But here's the truth. Even though I'm still in chemotherapy, even though my numbers aren't "normal" yet, I feel good again. I feel strong again. I feel like me again. I'm glad to be back.

The Weight of Attachments

When I was in yoga teacher training, I learned a meditation and visualization technique for overcoming obstacles.  I found it tremendously helpful in helping me to find my teaching voice and to be more confident in my ability to communicate.  I have been using this same practice at each of my chemotherapy sessions to aid me in climbing over the obstacle of my cancer. The technique is nothing complicated, yet I am always amazed at the insights I glean from this simple practice, and I am often surprised at the direction the meditation takes me.

I always have one full uninterrupted hour during chemotherapy when I am getting my Taxol infusion, so I put on some headphones, lean back in my chair, close my eyes, and start with a simple survey of the body, systematically relaxing everything from head down to toes. I then follow my breath, letting it become even and relaxed.

The meditation begins as I visualize a garden gate.  This gate will open only for me. Nobody else is allowed in my garden, and the gate is sealed behind me. I follow the pathways of the garden that lead me to a set of stairs that brings me to the door of a room. Sometimes the stairs go up, sometimes they go down. Again, the door to this room can only be opened with a key that I possess or with the touch of my hand. Most of the time when I do this meditation the room is not very fleshed out. It's usually a little bit like the scene in Harry Potter and the Deathly Hallows, when Harry momentarily dies and is in a very white soft looking version of Kings Cross Station.  There is always a set of french doors in my room that open to the world. At this point, I visualize whatever my obstacle is and hold it in my hands. I then throw the obstacle out the window and watch it fall away.

When I first started doing this meditation at my initial chemotherapy sessions, my cancer manifested itself as a black, gooey, tar-like substance that covered my hands and was so sticky, that there was no way I could simply throw it out the window. I had to enlist the help of a brilliant and cleansing stream of liquid light that helped to take it away and wash my hands clean.

Each week, the visualization of the cancer in my hands has changed. It has become less sticky over time, and just a little easier to release out into the world. This week, however, was different. This week, the cancer was not black or sticky. It was relatively easy to handle, more like a smooth, malleable clay that I formed into small balls. This time I didn't throw them all out the window but I instead put them in a woven basket.  As I placed them in the basket, I had a startling realization.  I knew at that moment, that the real obstacle at this point was not my cancer. There was something else that needed to be released.

I have been, without fully realizing it, mourning the loss of the me that was "before metastatic cancer". I am no longer that person who can just eat or drink something without thinking too much about how it will impact cancer growth.  I am no longer that person who can confidently put age 92 in her retirement planning calculator. I am no longer that person who beat cancer. All the plans I had for that person are now shrouded in uncertainty. I was pretty attached to that person and the plans I had made for her.

I recognized in that moment that I was suffering because of the attachments and the expectations that I had for myself. I had to allow myself to let go of my attachment to those plans, and I had to embrace the idea of simply walking the path each day as it unfolds. I was reminded that none of us is guaranteed a thing. We suffer because we try to hold onto that which has no permanence, that which has no guarantees.

So, I held in my hands the hurt, the pain, and the sorrow of lost expectations, and I rolled them into little heavy balls and put them into my basket. There was the cancer, the sorrow, and the expectations, all nestled in the basket, waiting for me to figure out how to release them out the window. I didn't quite know how to let them go, so I walked to the window and held the basket in my arms, contemplating what to do.

At that moment, an elderly grandmother of sorts came to my window. She was a beautiful old woman with long gray hair framing her face and kind eyes full of wisdom.  She took my basket from me. She gave me a hug, smiled at me and touched my cheek, and then disappeared with my basket in hand. I don't know who she was, or what she represents, but I felt the weight of those attachments disappear. I walked out of my garden feeling the sun shine on me, and a deep peace within me. I even found myself with a little spring in my step all afternoon.

It is entirely possible that I may beat cancer again.  It is entirely possible that I will live to age 92 or beyond. I am still making plans for the future even though I don't have, and have never had, any guarantees. None of us do. But what we do have is today. We do have this moment right here, right now. We do have the sweet ability to breathe in and breathe out. Whatever happens, we can live our lives as well as we possibly can today.  We don't have to be so intent on a destination. We can just travel lightly and enjoy the view on the journey. Maybe we'll arrive at a place that is better than what we had expected.

Climbing Back up the Mountain with Good News

Last week was a difficult week for me. I woke up the day after my chemotherapy treatment feeling much more tired than usual.  I began to experience some severe lower GI issues that lasted multiple days and resulted in me becoming dangerously dehydrated and lacking any real desire to eat. I gradually improved through the week, but I still felt tired every day.  Just getting up the stairs at my office to get to my desk was enough to have me out of breath, and I wondered how on earth I could keep climbing this mountain with so little strength.

I was worried that chemotherapy this week would be all the more challenging if I was starting from several paces back.  My doctor was worried that one of the drugs I'm getting may have been the culprit for my intestinal distress, but the more we discussed it, the more we realized that, perhaps this didn't have anything to do with my treatment. As we talked about when the onset of symptoms started, it dawned on us that we may have made a rookie mistake. Perhaps, the Chinese Buffet where we had lunch at after chemotherapy last week was a very poor choice for an immune compromised person to have lunch. Perhaps that shrimp had been sitting out just a wee bit longer than it should have been.  The lesson has been learned. We will forevermore avoid the Chinese Buffet.

It's truly amazing what IV fluid replacement will do for a person. We added fluids to my treatment regimen this week, and I left chemotherapy yesterday feeling worlds better than when I walked in. In fact, I feel like I'm back to my normal self again. Well, the new normal, anyway.

Truthfully, nothing ever stays normal for long.  If there's one thing we can always count on it's that things are bound to change.  What's normal one day is totally abnormal another day.  For example, I never thought it would be a normal occurrence for me and my husband to own matching superhero socks. But now we have several pairs.

Change can be a very good thing. It's a very good thing when your doctor calls you early on a Friday morning to tell you that your tumor markers have changed again.  It's an extremely good thing when she tells you that they have gone from 408 down to 218.  That's a drop of 640 points from before I started treatment, and I'm only halfway through. We like this kind of change.

Last week at this time, I was feeling like I had fallen down the mountain. This week, I'm feeling strong enough to climb back up towards the top.  Thank you to everyone who keeps throwing me ropes and helping to pull me up. I'll get there as soon as I can.

Halfway There

Today marked something of a milestone for me. I am now halfway done with my weekly Taxol infusions.  I've got six under my belt, and only six more to go.  So far, I've tolerated it very well. I get a little tired on Saturday nights and Sunday mornings, but, usually by Sunday evening I've perked back up and am ready for another week.  My white blood cell and red blood cell counts have remained in, or very close, to normal range each week.  If it stays that way, I have high hopes that I can maintain my energy and get through the last half without too much drama.  Treatment will not end at that point, but at least the most toxic drug will be over.

Of course, chemo is not a picnic for me or my family. It's killing healthy cells in my body right and left even as I write this. I anticipate that, by the end of these 12 weeks, I will be experiencing some of the more difficult side effects. I've already lost the hair on my head, for the most part, and I'm OK with just wearing hats, scarves, and wigs. Although I confess that I had forgotten how truly miserable it is to wear a wig, so you won't see me in one much. I am not terribly vexed about being bald other than it's pretty darned cold in Minnesota in February. Much harder is losing eyebrows, and eyelashes.  It's amazing how much they help to keep your eyes clear.  And you really don't realize just how much your nose hair is of benefit to you until you don't have any.

The hair loss is really one of the more minimal side effects. I will also, likely, have tingling in my fingers by the end (neuropathy), and very sensitive fingernail beds.  Taxol, and the Perjeta I get every three weeks are pretty rough on the GI tract as well.  I have lost four pounds since diagnosis, which is pretty noticeable for a person of my small stature.

Still, there are some good things about chemotherapy days.  First, I have some solid evidence with my tumor markers that the treatment is doing what it is supposed to do.  I also feel quite a difference in my lungs and have found that my cough is tremendously diminished.

Another good thing is that one of my premeds is a steroid called Decadron.  There is most definitely a reason why athletes try to cheat and use steroids to enhance performance. They really do provide a tremendous boost of energy. I generally feel great on chemo days because of my nice little packet of Decadron.

But probably the best good thing is that it gives me a little extra time each week with my husband. Just the simple pleasure of being able to have lunch together once a week is a welcome event, and I'm grateful for this as a side benefit of chemo days.

It is hard to be the person going through cancer treatment, but it is just as hard, if not harder, for the person who has to watch someone they love going through it. You wonder what you can do to help, but feel powerless. But perhaps you don't know that your presence is enough. Your expressed concern is enough. Your love is enough.

I am so fortunate to have so many supporters in my life.  While I would never wish cancer on anyone, I would wish for everyone to experience even a small fraction of the love and kindness that I receive daily. Every simple kindness creates a ripple effect that extends out so much farther than we may ever realize. I may never be able to give back as much as I've been given, but I will do my very best to let all the ripples of kindness I have experienced continue to expand their reach.  Clearly, I need to stick around for a long time.  I've got a lot of ripples to make.

Headed in the Right Direction

The last time I went through treatment for cancer, I vowed that I would never do chemotherapy again. I had one of the most aggressive chemo regimens that existed at the time, and it was very challenging.  I tried to stay as positive as I could, but I have to admit that there were days that I felt like the bottom of the garbage pail. I wondered the whole while if I was doing the right thing. I had no active cancer as far as we could tell, so there was no way to measure what the benefit of the treatment might be.  I still have no idea what the actual benefit may have been. Perhaps it kept me cancer free for longer than expected. Perhaps not.

Of course, when faced with metastatic cancer, I had to accept that chemotherapy was going to be part of my life once more, but this time it is a bit different. Not only are there some different drugs and an approach that seeks to be a bit more gentle, but this time I do have active cancer. This time we can see just what the benefits of treatment might be.

Cat scans are expensive and they expose you to additional radiation, so you can't have scans every few weeks. Instead, they measure tumor markers. A tumor marker is an antigen that is produced by the body in response to cancer, or is produced by the cancer itself. These markers can be used to evaluate a person's response to treatment. Normal levels of this specific antigen for breast cancer are usually between 0 to 39. We tested my blood for these markers at the beginning of treatment, and the numbers came back at a jaw-dropping 857. My doctor told me not to be scared by that number, but it's hard not to be a little concerned over a number that is more than 800 points bigger than it should be.

My oncologist did another blood draw just before treatment on Thursday. She wanted to see if my numbers had dropped at all.  Ideally, if treatment is effective, the numbers will begin to drop. She warned that it can take two full cycles before it happens, and, at that point, I had only finished one cycle (each full cycle is 3 weeks long).  She also warned me that they can even go up before they start to go down, but I was really hoping to see a nice drop in the numbers just to give me a sign that the therapy was beginning to work.

First, can I just say that my oncologist is a wonderful woman. She promised me that she would call me personally with the numbers when the test results came back.  I got a call from her at 6:58 PM on a Friday night.  How many doctors do you know that are willing to do that?  Of course, she was probably excited to share some good news with me, just as I am excited to share some good news with you! My tumor markers did go down. In fact, they dropped all the way to 408!  That's a drop of more than half, and that was after just one cycle of treatment. While that number is still high, it is most definitely headed in the right direction!

It is a tremendous relief to know that the treatment is working. I may be shedding my hair faster than a golden retriever in the springtime, but that's OK. I don't really mind right now. 

When Did I Stop Singing?

“In many shamanic societies, if you came to a medicine person complaining of being disheartened, dispirited, or depressed, they would ask one of four questions. When did you stop dancing? When did you stop singing? When did you stop being enchanted by stories? When did you stop finding comfort in the sweet territory of silence?

—Gabrielle Rotho 

I've seen the above quote before, but it really resonated with me this week. When did I stop singing? Somehow, at some point in the last few months, I had fallen out of listening to music on my drive to work and had been focused on news and talk radio. Instead of starting my day by raising my voice in song, I let my voice grow quiet, and I let the dark misery of the world news and political arena fill my car with their sad vibrations as I heard people fight each other and tear each other down.  

I used to write songs during my drive as well, but I haven't written a song for a long time. The last song I wrote was about my father-in-law which I shared at his funeral in September. It was the only song I wrote all year.  I haven't really felt like writing, or playing my guitar for a long while. I guess it should have been a big, bold, brightly-colored clue that something was amiss. I wasn't singing, I was allowing sad stories to dominate the airwaves, and I wasn't feeling terrific.  In fact, I couldn't really sing even when I wanted to, because my cough would interfere. 

Before last Thursday, I had almost forgotten what it felt like to feel fantastic.  But I got a good reminder on, ironically, a day that I was being pumped full of chemo poison. My treatment day this week started like usual, but something different happened this time.  Maybe it was the Wonder Woman socks I was wearing, maybe it was the steroids, or maybe it was the good energy of the nursing team and volunteer staff at the infusion center, but something inside of me changed. 

I realized that everything is connected, and I didn't want to see my own cells as the enemy.  As much as I might hate to admit it, my cancer cells are my own cells that have just lost their way.  They've tried, but they are just damaged.  Isn't that why people lash out and do awful things to one another? It's because they've been damaged in some way through hurt, pain, and loss. People can't be healed by being treated as an enemy.  A body can't be healed by being treated as an enemy either.  

So, I did the only thing I could think to do at that point. I channeled all the amazing love I've received from every one of you and I poured it into my body. I sent it down into every cell. I told the damaged ones that they did their best, but it was OK for them to let go now. And I felt fantastic. All day. 

I won't pretend that I feel fabulous all the time, because I don't.  I won't deny that I still feel scared sometimes, because I do.  I don't know what the future may hold, but here's what I do know.  I am singing again.