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. 

Positive Emotions

Today, I was reading about what science is learning regarding the benefits of yoga, mediation and prayer on the human body, and I was struck by the following paragraph:

Scientists over at the HeartMath Institute have demonstrated that when a person is feeling really good, and is full of positive emotions like love, gratitude, and appreciation, their heart beats out a different message that’s encoded in its electromagnetic field, which in turn has positive health effects on their body overall. You can read more about that here.

As a practicing yogi, I've long been aware of the deep connection between our mental state and our physical state.  Yoga philosophy is all about integrating mind, body, and spirit, but it's easy to forget. When I don't feel especially good, or I am feeling a bit tired, it's tempting to just say "No, I don't think I'll get on my mat today. I'll just sit here and browse the web or read a book."  But, it seems that's exactly the wrong impulse. It never makes me more energetic. It never makes me feel better. 

Do you want to hear something interesting?  I've had a cough for about three months now due to the nodes in my lungs.  It becomes worse when I've been talking a lot or I walk out into the cold air.  Do you want to know when I never, ever cough? It just so happens, that the only time I never cough at all is when I'm teaching a yoga class.  

Isn't that curious that, even though I am exerting myself, even though I am talking nonstop all the while, I never cough, and I always feel good.  I sometimes will cough a little right afterwards, but during the class, I just don't have the impulse. It's almost as though I forget that I have a chronic cough.  Perhaps I am so very much in the moment when guiding a class, that there is no room for anything else.  Perhaps the guided breathing I offer calms my nervous system.  Or maybe, the love and gratitude and appreciation I have for the energy of my students makes my heart beat out a different message to my lungs. 

I am so overwhelmed each day with love and gratitude for all the wonderful human beings in my life. Your generosity and kindness fills up my heart. If love and gratitude can make a difference in curing illness, if those emotions make my heart send out healing messages to my body, then those cancer cells simply do not stand a chance. They are going to collapse from the vibrations.  Thank you, for making my heart beat so strongly. 

We Can Be Heroes

This week, my Facebook feed has been filled with tributes to David Bowie as the world mourns the passing of this talented man.  He was an icon of music and style, and his work transcended generations. He leaves an amazing body of art, music and film that he shared with the world. His lyrics encouraged us all to turn and face the strange, and it was reassuring to be told that we could all be heroes, even if just for one day.

It was not lost on me that cancer was the culprit.  Of course, we don't know just what kind he was battling as he chose to keep the news of his illness very private.  I imagine, if I were in the public eye as he was, it might be more appealing to keep this news to one's closest inner circle. As an artist, he may have wanted his most recent work to stand on it's own merits, without the soft whisper of melancholy coloring people's view of his music. I do not really know why he may have chosen the path that he did.  I just know that I could not follow that path.

I have been thanked by many people for sharing my journey so openly, but here's the thing.  I could not do this by myself.  I simply couldn't.  Do you know how much you all help me? Every kind word, every text, email or card, every comment of encouragement, and every hug is so profoundly helpful.  Every phone call or gift reminds me that I have so many people in my corner. Every invitation to spend time with you reminds me that life can and must continue as usual. Every meal offered provides sustenance to both body and spirit, not just for me, but for my family as well.

As we head in for my next treatment tomorrow, I am buoyed up by the knowledge that we are not alone. We do not heal in isolation, but in community.  Thanks to all the everyday heroes out there for having our backs.  Much love to you all.

https://www.youtube.com/watch?v=bsYp9q3QNaQ

The Healing Journey Begins

And so it begins. I had my first chemo infusions yesterday. This was a day for all four drugs I'm getting, so Lanny and I showed up at the U of M Masonic Center at 8 AM and ready for action accompanied by every manner of electronic device possible to while away the hours.  This first visit was a temporary location for us, and we were there only because they did not have room for me at the oncology clinic I will normally go to.  They didn't want to waste a single day before getting me started.

The first day always takes longer than normal because they have to allow slower infusions and watch periods in between drugs to make sure that you do not have an adverse reaction.  They also do premeds before each infusion to help you tolerate the drugs better such as Benadryl and steroids.  I am happy to report I did not have any adverse reactions, except for about 10 minutes where my mouth felt like I had been walking through the Sahara desert for hours with no water.

Lanny kept me company all the while and brought in Chinese food so that I did not have to eat the hospital grade "turkey" sandwich that was offered.  I kept up on work emails, texted with a few friends, and napped a fair bit (I defy you to stay awake when you've had IV Benadryl).  We finally finished about 3:00 still feeling good.  I felt well enough to go our for a walk with Jasper when he got home, and I even did a bunch of laundry. Steroids are amazing things.

I, of course, am not leaving things up to just the chemo. Cancer cells can't proliferate in healthy terrain, and they can't thrive in the midst of Killer T-Cells. So, I'm eating all manner of vegetables and exercising as much as I can. I felt fine this morning so I went to a yoga class, and I'm now drinking an awesome juice concoction made with the ingredients below (romaine, kale, carrots, beets, ginger, half apple, tangerine, lemon):

I do feel a palpable presence in my lungs, and the nodes and spots seem to be pressing on certain areas.  I'm hopeful that, as the chemo begins to work it's terrible magic, it will be something I can feel changing.  At the very least, I seem to be coughing less than I was previously, so maybe it is already starting.

The results from round one:  DeAnn: 1   Monster: 0

The Next Steps

We are so deeply grateful for the outpouring of love and support that we have experienced in the past few days.  I wish I had the time and energy to respond to each one of you individually, but I hope you know that we read and appreciate every message.  I am beyond fortunate to have so many wonderful souls in my life.  Thank you.

I forget that most people have never been in cancer treatment world, and I have been asked a lot of questions as to what this treatment might include and how in the world can I have breast cancer in my lungs? I admit it is highly ironic that I do not have any sign of cancer in my remaining left breast, but I do have breast cancer in a whole bunch of other places. Here's how it works for those of you who like details.

In my first go-round, I was Stage III because there was not evidence that it had spread beyond the lymph nodes. However, cancer cells that break off from the primary tumor may be microscopic and can travel through the lymph system of the body. For breast cancers, it is very common for them to move (metastasize) to the lungs, liver, and bones.  Any time a primary cancer has moved to a different part of the body, this is considered Stage IV cancer. It is considered incurable, but that doesn't mean it is not possible to go into remission and achieve NED status (No Evidence of Disease).  This is the goal, and we have a new drug weapon now that we did not have the last time I went through treatment.

The arsenal of monster-fighting weapons will include the following treatment regimen.

Starting on Friday, and then moving to Thursdays, I will get 12 weekly infusions of Taxol (a chemo drug I had last time and tolerated very well). Doing it once a week means I can get a smaller dose and it's a lot easier to handle.  All the usual chemo side effects apply.  Hats and scarves will likely be in my future.

On week 1, 4, 7 and 10 I will also get two additional drugs, Herceptin and Perjeta. My cancer is HER2 positive which means that it tests positive for a protein called human epidermal growth factor receptor 2. HER2 promotes the growth of cancer cells and about 20% of breast cancers have this gene mutation that makes an excess of the HER2 protein.  While having lots of these HER2 proteins means cancer spreads fast, it also creates an Achilles heel that Herceptin and Perjeta can target.  These two drugs are monoclonal antibodies that target that specific protein and block its growth.  I had Herceptin last time and now we have this new drug called Perjeta to add in to the mix.  I wish I could share with you just how confident my doctors are about this treatment. I've talked to a lot of cancer doctors in my life, and I've certainly never heard them be so excited about something.

Once those first 12 weeks are up, I will continue to get the Herceptin and Perjeta every three weeks for another three months.  The side effects from these two drugs are much less than from the Taxol, and I had no issues when I was on Herceptin last time. I will also be getting a once a month injection of a drug called Xgiva which will help my bones to stay strong and will deal with the cancer in the bones more effectively.

Once those three months are done, we will assess the results through more scans with the goal being NED! Hopefully, I will be able to just go on a hormone therapy at that point and take a pill every day to keep it in check. I may never fully be rid of my monster, but we can turn it into a little tiny mouse that I just have to get after once in awhile.

Caught by the Monster

Well.

I'm pretty sure that starting a post with the word "well" is not considered to be stellar prose, but sometimes, words fail us.  Sometimes we discover that we are not nearly as strong as we think we are. Sometimes we are reminded that life isn't as fair as we want it to be. Sometimes, we can feel the monster that has been chasing us getting ever so close.  Sometimes, the monster catches us.

The monster caught me.

The Tuesday before Christmas the nagging cough that had been plaguing me for weeks escalated into difficulty breathing.  A trip to the ER confirmed that the asthma diagnosis I had been given just 10 days earlier was definitely not asthma.  A chest x-ray quickly revealed the truth.  I had enlarged nodes in my lungs and spots in both lungs of various sizes - spots that were consistent with metastatic breast cancer.  The monster was back, and it had colonized new territory.

A whirlwind of tests and scans followed including two CT scans which also showed lesions on my liver. Additional PET Scans and a liver biopsy confirmed what we had all fully come to expect. It's the very same cancer I started out with eight years ago. It just found some new terrain it liked, including a spot on my hip bone and a spot on one of my lumbar vertebrae, and my immune system just couldn't keep up. I'm pretty proud of my white blood cells for doing so well for so many years. But even the best defenses can get overwhelmed by the monster.  So, it's time to call in the big guns again. Chemotherapy.

Those of you who know me well are aware that this is the part where I attempt to find the positive side of things.  But, the thing is, I do have an awful lot of positives.  I have an amazing network of support - Lanny and Jasper, my Mom, and so many of you who have stepped up and said, "Just let us know what you need."  I have a totally supportive work environment. I am, in all other respects, very healthy. My breathing is strong again. I have good insurance. I have a yoga and meditation practice that keeps me clear headed and grateful for each day. And I have the advances of medical science in my corner with, what my fabulous oncologist calls, "some amazing new drugs."

I had a port installed today, and I have my first infusion on Friday.  I used to have a Caring Bridge site, but since I can't quite remember how to access it to make more posts, I've decided to resurrect my blog.  It feels like the right place to share the journey anyway, because, as awesome as Caring Bridge is, it's meant to be a place to share health information. And I am so much more than my cancer.  My cancer is simply a part of me. I have a lot more to talk about than cancer. Granted, it may dominate the conversation for awhile, and I won't pretend that I'm not concerned, and I still wish I didn't have to do this, but I don't plan to go anywhere anytime soon.

So, I guess sometimes we do find the words.  Sometimes we discover that we are a lot stronger than we thought.  Sometimes, we discover that life is unfair and messy, but also beautiful and generous.  Sometimes, we turn around and face the monster, and when we step out of the shadows into the full light of day, we discover that the monster loses its fangs and claws.  Sometimes we grab hold of the monster and decide to tame it. I think we can do it.