Connections

This past weekend, I went to my 30 year high school reunion.  It's a little hard to believe that 30 years have already passed since I graduated from high school, but time has a funny way of whizzing by in the blink of an eye.  The passage of time was evident, however, as I sifted through memories to put names and faces together. I was thankful for the name tags that included our senior pictures as many of us had changed a lot.  I know that I, personally, looked a lot different from my high school photo.  Remember, this was 1986 and big, curly hair ruled the day.  It's quite a contrast from the sleek 1/4" long white downy hair that currently adorns my head. Although many of my classmates already knew about my cancer journey through Facebook, those that didn't quickly put two and two together based on my hair.

I was a bit surprised at just how excited I was to see all of my old classmates.  After all, many of them I haven't even thought of in thirty years. In fact, there were probably a good number of people that I never really talked to even when we were in high school together. I'm from a pretty small town of about 12,500 people with only one middle school and one high school. Our class was small enough that we all sort of knew who everybody was, but it was big enough that we weren't all good friends. We all had our own little tribes that we tended to stick with, and some of us may only have encountered each other in the hallways of our school.

Despite the fact that I had almost nothing to talk about with some people, aside from the obvious, "where do you live now" and "do you have any kids" questions, I discovered that it didn't matter at all. I was still really, really happy to see everyone, even if I didn't say a single word to them all night. Every person in my class is a part of my history. We all shared a common experience that binds us together in ways that are hard to articulate. I spent the most formative years of my life with these people. It dawned on me at one point, that there were many people that I had known since I was 6 or 7 years old. Life has taken us all down different pathways, but as we danced to all the old songs and laughed with each other, I still felt connected to everyone there. They all played a part in making me who I am.

Cancer has opened my eyes just a little bit wider than they were before.  I appreciate the connections even more. I see my own energy and the energy of those around me in a different light, and I am beginning to understand just how much everyone I interact with contributes to my sense of self and well-being.

Today, I had another infusion day and we had an appointment with my oncologist (who also happens to know one of my classmates - their kids go to school together - more connections). We received good news that I am still having a positive response to treatment with stable to shrinking tumors. Some have disappeared completely and everything continues to move in the right direction.  We expected, based on my tumor marker numbers, that this might be the case, but it is always a relief when the scans match our expectations. My Dr. is extremely pleased and intends to keep me on what is appearing to be a very successful treatment regimen.

I, of course, wanted to share this great news with everyone, and I thought again about all of the people I am connected to, many of whom I have never met personally, and how much they all contribute to my state of being. I hear people tell me that I am strong, but I am not strong enough to make this journey alone. I have the strength of so many people walking with me.

The connections we make in our daily lives may not seem very important at the time, but those community connections matter. We never quite know what impact we may have on somebody, even if it isn't obvious. We are all so much more connected than we realize. I was grateful to be reminded of that by my classmates, and I am grateful every day for those that walk with me and keep me strong. If you are reading this now, that means you.  I am grateful for you.

Forgetting

The human body and mind are pretty amazing.  We, thankfully, have the ability to forget physical pain and discomfort. We remember it on one level, but as long as we feel good now, we tend to forget how awful we may have felt previously.  It's why women are willing to go through childbirth more than once. It's why people who swore up and down on a Sunday morning that they would never drink that much ever again, end up drinking the same amount the next Saturday. It's why people who have been sick and then get better tend to fall back into the same old habits that may have gotten them there in the first place.

I'm trying not to forget.

As the cancer recedes and my body begins to recover from the cancer and from the treatment, I'm trying not to forget how much my chest hurt from coughing so much. I'm trying not to forget how much my heart sank and I tasted the fear in my mouth when the emergency room doctor asked me if I wanted my son to wait outside the room while she told us my x-ray results.  I need to remember the crushing fatigue that would hit me three days after every chemotherapy treatment. I need to remember that I would be out of breath from climbing the stairs.

I need to remember these things because I don't want to grow complacent. I don't ever want to take for granted how amazing it feels to breathe deeply. I don't ever want to take for granted the gift of seeing my son grow taller.  I do not want to take for granted the ability to sit in the sunshine and have enough hair on my head to keep from getting a sunburned scalp. I especially must never forget the tremendous kindness and love that has been directed to me and my family. I have been humbled to the ground by so much generosity, that I may never find a way to repay it all.

I need to remember every act of kindness so that I can remember to give that same help to others.

Everybody encounters suffering of some kind.  I have had people tell me they feel guilty complaining of small difficulties in their lives because "it's nothing compared to what you have been through."  But my answer is that a challenge is a challenge no matter how big or small. We need to share our challenges with each other because we need each other to overcome them.  None of us gets through this crazy world without facing some serious pain, both mental and physical.

I am grateful that I don't really have any physical pain now aside from a few minor chemotherapy related side-effects that are diminishing daily. But I don't want to forget that pain because I can learn from it. I can learn what to do to try to avoid more of that pain in the future. And I hope that I can use the memory of that pain to lighten somebody else's load, just as mine was lightened.

We often forget that we are more alike than we are different. We often forget that we are all just a part of one great big whole. We often forget that we are here to help each other.

I'm trying not to forget.

The Greatest Gift

Sometimes we are oblivious to how lucky we are.  We often don't realize how good we have it until something goes wrong. But every once in awhile, we have our eyes opened without having to go through fire and flame, and we can truly appreciate the good things in our lives and fully understand just how fortunate we are.

When I was a student at the University of Minnesota, there were a lot of requirements for graduation that I was totally annoyed over.  I just wanted to take classes that were part of my major and graduate, but the College of Liberal Arts expects you to be a well-rounded person, so there were lots of additional requirements.  I was always trying to find classes that would satisfy more than one requirement, so I was excited when I found a class called "Biology of Women."  Not only would it fulfill one of my science requirements but it also fulfilled a "minority studies" requirement or some such thing. I also figured it would be relatively easy because I liked biology and, hey, I was a woman, so it seemed like I wouldn't have too much new to learn, right?

Wrong. I was surprised at how much of the class discussion turned into how women in our society are treated, and I was unprepared for some of the difficult stories that some of them shared. I learned pretty quickly that my life had been easy compared to many of my classmates, and that my experience growing up was very different from most.  It really hit home when we had to write a paper for class about how our gender influenced our choices as we grew up.  I wrote about how I had never felt that my gender would keep me from doing anything.  My parents were wonderfully supportive of me and my sister all my life. We were never told we couldn't do something because we were girls.  We were always told from a very early age, by both of our parents, that we could be anything we wanted to be.

I wrote about my wonderful mother, and how she and my father were true partners who both spent time with us, who nurtured us, and who laughed with us.  My mom was usually the person who fixed things, who read the instructions and put things together. She was the one who planned out the vacations and always knew what to do when things went awry. She always found a way to see the positive, and still does to this day. She was always, always there for us. She showed me that great strength comes through great kindness. She was living proof that women were strong, capable, and able to make things happen.

When I got my paper back from my professor, I read through her comments.  She wrote "You are very lucky. You had the rare gift of a happy childhood."  I was a little dumbstruck by her comment. Was it really so rare? And then I started to recall some of the stories that had been shared by others; stories of abuse and rape, stories of abandonment, stories of such hardship that I had never encountered. I was overwhelmed with gratitude to my family for sheltering me from so much of the pain that this world can bring. I remember calling my parents that night just to say "thank you".

Our beliefs shape us. When you grow up believing that life is good, and that you were meant to be happy, you just don't accept other outcomes. If you wonder how I stay positive despite everything, if you wonder where I get my strength and my resilience, my answer is that I was given the gift of love with no strings attached. I was given the gift of confidence in my abilities. I was given the gift of believing that everything would always work out. I was given the rare gift of a happy childhood.

I wrote this song for my parents a few years ago. I'm sharing it now for those who would like to hear it.  The recording is very low quality as I did it on my Ipad in Garageband, and my voice isn't as strong as it used to be, but I hope you enjoy it anyway.

Getting Back to "Normal"

This week was the first week since the beginning of January that I did not have to go in for any kind of chemotherapy infusions.  I went to work every day. I didn't have any needles jabbed into me.  I didn't have to pack a bag full of snacks and reading material to while away the hours in the infusion chair.  I just had my usual routines.  It was refreshingly normal.  

My new version of normal includes a new treatment plan that should be a lot easier.  I will now only have to go in for infusions once every three weeks, and I will only get Herceptin and Perjeta each time. These drugs are much less hard on the body in almost every way. I should start to see my hair coming back and, hopefully, an end to the sensitive fingers and toes.  I can already tell a difference in my energy levels now that I'm no longer getting Taxol.

I will still get an Xgeva shot for the cancer in my bones as well, but I will only get that on every other visit.  I am also on a new hormone therapy pill called letrazole since my cancer is fueled by estrogen. Letrazole is known as an aromatase inhibitor and it works by reducing the amount of estrogen the body produces.  So far, I haven't had any side effects from the pills after taking them for a week, and I'm hoping it stays that way.

How long will I continue on this treatment plan?  Well, that's anybody's guess. We'll keep at it for as long as it seems to be keeping the cancer at bay and as long as my heart stays strong. At this point, things are looking good. My CA27.29 tumor markers are now down to 68 (from a high of 850, with normal being 0 to 37), and my CEA tumor markers are down to 3.5 (from a high of 48 with normal being 0-2.5).  Maybe next time those numbers will be even closer to normal range.

And there's that word "normal" popping up yet again. Normal is a bit of a loaded word, isn't it?  What, exactly, does normal mean?  We like normal because it is familiar. We like normal because it feels safe. It's a day where everything sort of turns out the way you expect it will. It's a day with no real surprises. But it's all relative, isn't it.  Our expectations for what is normal are going to vary from person to person and from day to day. To quote Morticia Adams, "Normal is an illusion. What is normal for the spider is chaos for the fly."

Of course, it's also normal for the fly to get caught in the web. That's what life is. Spiders eat flies. The fly just didn't expect it to happen to him. Maybe there's a lesson there for us all. We are all going to hit that spider web, but the more we struggle against it, the faster we get entangled, and the more stuck we feel.  Maybe if we are a little more calm and peaceful, the spider won't notice we are there.


 

Turning the Page

Today marked a major change in my treatment plan. My oncologist confirmed that I can now quit the beastly Taxol chemotherapy. Although I've tolerated the drug really well, the last few rounds have made me really feel the cumulative effects of all these weeks of treatment. It's harder to bounce back from the fatigue, some of my toes are now completely numb, and my fingernails are so sensitive that I have trouble opening a food container. I know lots of people have much worse scenarios with chemotherapy, so I feel pretty lucky all things considered. I can still work. I can still do push-ups (only three in a row, but hey, it's a push-up and they are hard), and I can still live a pretty normal life. I know it takes a big chemo beast to tackle the toughest monsters, but I wasn't relishing the idea of allowing the beast to continue it's weekly rampage of indiscriminate destruction.

I didn't get a chance to meet with my Dr myself, but my husband ran into her in the hallway and chatted for a few minutes. She told him she was very pleased with my scan results and said that, at this point, the last three Taxols, including the one today, probably had a very exponential effect, and if I were to get a scan today, I would see an even greater difference. I will continue to receive Herceptin and Perjeta once every three weeks for the foreseeable future, but maybe even someday I can stop that for awhile too. Although these drugs are a lot easier than Taxol, they are not totally without side effects, so this was also very encouraging to hear. She said that Perjeta, the newest drug, is really doing some amazing things for her patients, and she thinks it will do some amazing things for me too.

This was all wonderful news to hear, and it really feels today like I have now turned a page and have finished one chapter and am starting on a new one.  The whole previous chapter started out kind of scary, and I was feeling a little stuck there once in awhile. You see, metastatic breast cancer isn't known for happy endings. In fact, when I scanned the other books on the breast cancer shelf for clues as to what my story might turn out like, I wasn't too thrilled with what I was finding. So many plot changes, ups and downs, false starts and so much potential drama and horror. I don't really like drama. I could barely even stand to watch the Lucille Ball show when I was younger. Even though it was a comedy, I just knew she was going to make some terrible mistake and get into all kinds of trouble, and I couldn't take the tension! I don't like horror stories either. I still get shudders over movies like Silence of the Lambs. In fact I got chills just typing the name of the film.

But I now realize that every story is different, and here is the best part. I am in charge of writing my story, and I can make it be anything I want it to be. Isn't that fantastic? We get to make it up as we go along. Since I don't like scary stories or super dramatic stories,  I don't want to write one like that.  Of course I know that sometimes you can't control every aspect of the story, and a little drama is going to sneak in even if we don't want it too. But that's the way that stories go. I guess every story needs a little bit of drama to keep the story interesting. Sunshine and daisies are great, but the daisies can't come up without a bit of rain and those spring thunderstorms beforehand.

Still, I think a little drama goes a long way, so I'm going to try to keep writing a story that makes me happy. I'm going to try to keep writing stories and songs that make others happy too.  I'm excited to turn the pages to see what the next chapter brings.  

Suck Up and Take Your Medicine

 

My long-awaited scan results came back last Friday.  I tried not to be too attached to any outcomes.  I, of course, wanted the scans to be crystal clear, but based on the tumor markers from a few weeks ago, I knew it was highly unlikely. My husband and I waited for the nurse practitioner to join us in the exam room to give us the news, but neither one of us was quite certain what we were going to hear. I was pretty confident that everything had shrunk a lot, I just didn't know how much.

My nurse clearly has done this a lot because she didn't keep us guessing. She came in right away saying "I have really good news to share with you!"  My echocardiogram, as expected, came back totally normal, which is great. That means I can keep getting the Herceptin and Perjeta drugs without worrying about my heart function.  Although they can cause some cardiac toxicity, these are the key drugs for keeping the kind of cancer I have at bay, and it would have been a serious blow if I were not able to continue with them.

The real question, however, was what the PET scan showed. The PET scans show how much of the radioactive glucose (FDG) was absorbed by the tumors. They call this FDG Avidity and they measure it by a scale called Standard Uptake Value (SUV).  You didn't know you would get a PET scan lesson today, did you? Basically, the larger and more active the tumor is, the brighter it glows.

The scans no longer show uptake in the lymph node by my thyroid. They show that the lesions on the bones are almost gone. They show the liver lesions are almost gone, with only one liver lesion that is still somewhat active with an SUV of 10.6, but it was previously 16 and the lesion is half the size it was before. They show the lung tumors are almost gone, with only one that had any real FDG Avidity, but again, it is half the size it was and has reduced in activity by about 75% from an SUV of 15.4 down to 2.7.

This is all really good.  Really, really good.  The nurse called it a "wonderful" report. She thought I might even be able to quit the Taxol going forward. The nurse gave me a big hug and told me I was doing a great job. It was a very good day, and a very good weekend.  

I learned yesterday morning, as I was driving to work, that I don't get to quit the Taxol just yet. My doctor wants me to do at least two more infusions. I wasn't thrilled about that. This news happened to coincide with my low point post treatment and I was extremely tired, my fingers and toes were numb, and I was feeling pretty down. And then I heard the song in the video above.  I have a big playlist of songs on my phone that inspire me, that make me happy, or that just make me want to sing.  I hook it up to my car stereo and let it play at random. Just at that moment when I was starting to feel sorry for myself, Take Your Medicine began to play.    

You can take it in stride, or you can take it right between the eyes.
Suck up, suck up and take your medicine.
It's a good day, it's a good day to face the hard things.

Pulled my fist from my mouth.
I beat myself for a quarter century.
Remind, remind that it's bigger than me.
Dissolve, dissolve into evergreens.

It was just what I needed to hear at that moment. It's easy to be positive when I feel great. It's not as easy when I've been hit by the Taxol truck. It's awfully tempting to fall prey to the siren song of self-pity, but I know it doesn't do anybody any good, least of all me.  The song reminded me that it's all temporary. Everything dissolves away eventually, even the hard things. The Taxol truck may have hit me hard, but it is also making it possible for me to travel farther down the road to remission.  I just need to suck it up for just a little bit longer. Nobody likes the hard things. But I think the hard things make us stronger in the long run.

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.