All posts by Pink is Complicated

About Pink is Complicated

Sharing uplifting, thoughtful and humorous insights on parenting and the skill and art of living with cancer.

October Then and Now


Someone asked me once if it felt different when I was first diagnosed with breast cancer from when I was diagnosed with metastatic breast cancer. It did. When I was first diagnosed I felt terrified, but also strong and confident.  There were all of these pink images and smiling faces surrounding me and telling me I’d be fine.  I believed them.  I was uneducated about metastatic breast cancer when I was first diagnosed. After all, I was only stage 1 and had no lymph node involvement.  What did I need to know about metastatic breast cancer?  In my mind I’d sacrifice a breast, ( but get a boob job in return) lose my hair, which would grow back and then I’d pick up my life and move on. There was a finish line to run towards and I was going to cross that line and be done. Yep, NAIVE.

Looking back I’m not sure what would have helped me.  I believed that early detection had saved my life, because that was my reality at the time and I didn’t know better. I’d gotten mammograms every year since I turned 40.  In fact, I’d just had an all clear mammogram 3 months before I found the lump. It puzzles me when I think back.  I like knowing the facts about things.  I’m not comfortable with sugar coating.  I want to know what the percentages of success are from one treatment to another and I can live with uncertainty.  It’s one of the reasons I chose to have a single mastectomy. There was such a small chance that cancer would recur in my other breast with the treatment options I’d chosen that I knew I could live with the possible false positives that may come up in future imaging tests.   I kept hearing if I made it five years without a recurrence I’d be okay.  I didn’t know there was a 30% chance I’d develop metastatic breast cancer at any point in the future.  I thought women and men who died from breast cancer were dying because they didn’t catch it early.  No one said that once you are diagnosed with breast cancer you can never really be sure it won’t come back.  Who wants to live with that?

My stage 1 self would have liked to have known all of these facts.  I’d want to know what to look for in terms of recurrence.  I needed to know that breast cancer can spread to the bones, lungs, liver and brain and be aware of possible symptoms.  Not because I like to live in fear, but because knowledge keeps me strong.  I would have been shocked to learn the measly amount of  pink money that goes towards researching breast cancer metastasis.  Cancer kills almost 600,000 Americans every year. Many of those deaths are caused by metastatic cancer, or cancer that has spread to vital organs. We don’t know how or why cancer spreads.  Isn’t that crazy?  Research into cancer metastasis is not well funded.  Everyone looks at prevention, but in doing so we are abandoning the almost 600,000 Americans dying every year from this disease.  40,000 of those deaths are from metastatic breast cancer. My stage 1 self would have felt much safer knowing copious amounts of research was happening to stop the possible spread of my cancer and if I was one of the 30% who developed stage 4 cancer, there would be treatment available which would provide me with a long and high quality of life. Unfortunately, this isn’t happening. Yet. I’m hopeful things are starting to change.   The mbc community is lobbying Congress today for more funding for all metastatic cancers.  My hope is that by working together we can create meaningful change.  Because  losing almost 600,000 Americans each year is too many.  We can do better.


Want to help?  Donate to Metavivor.  100% of your donations go towards funding metastatic breast cancer research. Team Judy  also supports mbc research at the Masonic Cancer Center, University of Minnesota.  100% of the funds we raise goes towards mbc research.




When Will You be Done?

This is the question I hear most frequently from people.  They see my hair growing back and assume either I’m done with treatment, or must not be going through treatment at the moment.  The answer is, I will never be done treating for metastatic breast cancer.  If I am “done” with treatment, it will mean that I’ve decided the disease has progressed so far and fast that treatment will do nothing but further diminish the quality of my life.  At that point, I’ve decided I won’t put myself through the side effects and will spend the time I have left with my family.  I’m already considered an “exceptional responder” in that I’ve survived more than 5 years with mbc.  The odds of that are only 1 in 4.

I am still actively treating.  Currently, I’m on an IV drug called Gemzar or gemcitabane. The side effects include flu-like symptoms, fever, nausea, fatigue, and lowered platelet counts. Hair loss is minimal and mostly consists of hair thinning.  I have treatment once a week for 3 weeks and then have one week off.

Treatment starts

The off week happens because usually, after 3 rounds my blood counts have lowered to the point that it would be dangerous for me to have another treatment.  The off week gives my body a chance to recover and get ready to do it all over again.  My last scans showed that this treatment is holding things steady.  It doesn’t mean that the cancer is gone or has gotten less severe. It means that the chemo is keeping things in check and more or less, nothing new has grown.  I have a few new spots, but they are small and some other spots have gotten a bit better.  So, the fire wall is holding and we are keeping things at a nice, slow, contained burn.


In the meantime, I do what I can to support my body and me.  There is no magic or nutritional cure for cancer.  You can support your body and immune system, and I do. But eventually, the cancer will outsmart your immune system and spread.  This doesn’t mean I give up and don’t do what I can to help myself.  I like to say I’m a “realistic optimist” and I do all kinds of things nutritionally and otherwise to support my mind and body.

How I look a few hours later. Blaghh.

I’m fully aware of reality and what can happen.  I’m just hoping it doesn’t happen for a long time. That’s one of the scariest parts of living with the unpredictability of this disease. Things can happen so quickly.  Even though my scans look stable there is a tiny part of me still nervous.  This is because I have lobular breast cancer and my tumor markers are at one of their highest points ever. Usually, when a chemo is really working, my markers will go down. Lobular bc is notoriously hard to see on scans.  It grows in sheets, or fingers instead of compact tumors.  Which makes organ involvement harder to spot.  But for today, I’m good and I’ll stay with that!


Despite being on Gemzar I’ve been busy.  I’m not sure how chemo side effects and timing have worked out so well, but they have.  We’re gearing up for Ladies Midsummer Wine Night, our annual fundraiser for mbc research.  This year we hope to break the $100,000 mark!  I also gained a greater understanding for why supporting small research grants is so important.  In my enthused, energetic chemo break last winter I applied to be a consumer advocate for the DOD Breast Cancer Research Program.  I was accepted and served on a committee looking at incoming research grants.  I’ve never been in a room with so many MD/PhD labels! IMG_2492 Before research grants can apply for certain funding levels, they have to support their proposal with preliminary data.  Many researchers have fantastic ideas, but don’t have the funding to gather this preliminary data and take their ideas to the next funding level.  This is what Team Judy helps to support with our mbc grants.  We choose a researcher to support at the Masonic Cancer Center, University of Minnesota, so they can gather their preliminary data in order to apply for the larger DOD and NIH grants.  It’s disheartening when you realize how few research dollars goes towards metastatic research.  Over 1600 Americans die every day from metastatic cancer.  We must find a way to figure this out.  It’s also why I was happy to participate on a panel at the University of Minnesota Cancer Moonshot event on June 29.

IMG_2470Too many Americans are dying from cancer. We need to collaborate and share the data that comes out of publicly funded research grants.  Often times, large institutions delay in sharing their data.  That’s not cool, so to speak. We also need to look at all sides of the problem.  We can’t just focus on prevention and treatment of curable cancers.  If we don’t understand how cancer metastasizes then we are missing vital pieces of the puzzle and won’t have a clear picture on how to control metastatic disease.  If you’d like to help Team Judy support metastatic breast cancer research grants you can donate to our crowdfund page.  100% of what we raise goes directly to the labs of researchers at the Masonic Cancer Center, University of Minnesota.


Hello Chemo, My Old Friend

IMG_2010I last did IV chemo in January.  I was getting tired.  Tired in a way only someone on chemo gets. Worse even than those first few months of living with a new baby or soft puppy.  My body needed a break and so did my mind.  So, my onc and I talked and agreed I’d take a short hiatus.  I had places to go and people to see.  And it has been wonderful, truly wonderful and sad all at the same time.  Wonderful because I soaked up the sun and buried my toes in the sand with people I loved.  Wonderful because after a month I realized I could do two or three errands in a row instead of hoping I could get through 1 short errand.  Fantastic, because I started enjoying my independence again, driving myself places, staying up late enough to see the stars and the moon. But sad too, sad because it highlighted how fatigued and worn out I really was feeling.  Sad because even after two months I still wasn’t feeling “normal” whatever that is.  I went to pull all the greens out of the pots and found myself sitting down and crying after 3o minutes.  Nope, still can’t do that all at once.  I need to plan for short runs of physical activity.  Even with going to the gym and trying to keep up my endurance and strength.  It’s one of the hard parts about stage IV cancer. There is no end.  There is no real “getting better” and going back to “normal”.  It’s a constant cycle of scan, treat, repeat and sometimes grief sneaks in.  Sadness at the things you were once able to do and can’t. Sadness at the loss of a job, sadness at the loss of strength and stamina.

The wonderful vacay is about to end. It’s been sweet while I had it.  Long enough to grow back some eyebrows and eyelashes and a bit of hair. Do not underestimate the importance of eyebrows and eyelashes!  Love those two things! Monday will be a day of scans, bone scan, and CT scan of my abdomen and chest. Once again hunting down those cancer cells.   Lobular cancer is a sneaky thing.  Instead of growing in clumps it’s sends long branches out searching for organs and other essential body parts. It’s hard to find on scans sometimes.  I have had  more pain and that lets me know things are happening somewhere. My tumor markers are going up, but not horribly, considering I’ve been on a break. I’m glad I did it.  For me, this is about balancing quality of life with treatment.  Tuesday I’ll check in with The Wizard and knowing him, I’ll be back in my blue chair that very day.  Still not sure which chemo we’ll try this time.  We’ll wait to see if I’ve had significant progression and what that looks like.  I’ll let you know. I’ve also got more to say on my weekend at the LBBC conference and all the other things I signed up for during my respite.



I pulled up the blog and noticed a few stunted attempts to write, but the words have been trapped. I guess that’s as good a definition of writer’s block as any. It’s not that I don’t have things to say, it’s the fact that even I get sick of hearing about cancer. The reality is no matter how much I try to not make my life about cancer it takes up a major portion of it. Whether its scans, doctor appointments, labs, treatment days or recovery days cancer is running a lot of our family life right now. Sometimes it makes me feel guilty. So many cancer patients say “I’m not going to let cancer take over my life.” I don’t think I know what that means, not really. Does it mean I pretend I don’t have mbc?  Do I pretend this isn’t having an effect on my ability to function?  It was depressing me trying to figure it all out because no matter how hard I try cancer is slowly taking over a lot of my life. This is what I’ve decided, cancer and I have to try and live together. It takes too much energy for me to push it out entirely. I find myself fighting back valid emotions like fear, depression, anger and sadness. Cancer is here to stay. I’m going to have to adjust to the fact that it is taking up a bigger and bigger chunk of my life. I actually feel better acknowledging that. It doesn’t mean I’ve given up living. It does mean that when I have those moments of grief over the loss of something in my life I can acknowledge it, feel the emotions and then move on without fighting to hold them in. There are these small, poignant, so sad times when I realize that I’ve lost another inch in hanging on to the old me. There were times last August when even though I pulled it together and went on the boat there was more discomfort than joy. I missed a lot of beautiful sunsets. I was out late last week and realized it’s been a very long time since I’ve even seen the moon. I’m usually in my pajamas by 5 or 6.

The holidays have been hard. It’s been difficult to not compare where I was last year with where I am this year and then of course, wonder about next year.  Will I have the energy to cook and host next year? Should I label ornaments before I put them away? Take pictures of how I decorate and put them in the boxes before I pack the stuff?? I was worn out like crazy this Christmas, but I was grateful, grateful, grateful that I could do what I did. I learned that instead of a good nap helping me feel better, now it takes more like two days in my pjs. I’ve said this so many times, but it’s true; I have to keep finding my balance while my center of gravity keeps moving. It seems every month brings a “new normal” for me and I have to adjust my expectations once again. ” Live in the present, live in the present, live in the present.” That’s the only way I’ve found to have peace with stage IV cancer. Do what I can when I can and don’t beat myself up if I can’t do more. There are times when I have to acknowledge that my body is tired, oh so tired and I have to give in. Cancer fatigue stinks! You don’t get a good night’s sleep and wake up feeling better. You wake up still feeling tired. You take a shower and rest before you can get dressed. It takes you an hour to do something that once took 30 minutes and you consider doing laundry a good workout because there are stairs involved.

As 2015 leaves us and 2016 arrives I still have hope for the new year. I’m learning that hope means different things while living with mbc. This year I hope that I’ll have more good days than bad. I hope I have more time with the friends and family I love. I hope for more laughter, and more great memories. I hope I don’t get my inaugural hospital stay, that I won’t need a blood transfusion and that the cancer stays out of my internal organs. I hope Abraxane keeps working and that I can take a few months off from it and enjoy the break and regain some energy. I hope I can keep finding my balance when I fall and that I have the grace to lay down and rest when I need it. I hope for strength and courage and the ability to stay grateful for all the wonderful moments I still have in my life. I hope I’ll laugh more then I’ll cry. I hope I keep having hope.


I’ve been thinking a lot about the book ” My Many Colored Days” by Dr. Seuss.  It’s been an apt descriptor of what life has felt like recently.

“Some days are yellow, some are blue.  On Different days I’m different too. You’d be surprised how many ways I change on different colored days.”

My last scan showed some cancer growth, with new lesions on my spine and one of my left rib.  The pain in my spine has been tolerable and well controlled with pain meds and by managing what I do physically.  I have been surprised by how much I’ve felt my rib pain.  Last month after my scan results my doctor and I discussed what to do next.  Both of us felt that given the new lesions it was unlikely the Ibrance was working anymore. However, since my next treatment option was IV chemo I wanted to wait another month to see what would happen next.  Moving to the next drug would have a significant impact on my quality of life.  Unfortunately, during this last month the pain in my ribs has increased quite a bit.  I’ve learned that I really do have to stay on top of my pain meds and not try to martyr through it.

“Some days, of course feel sort of brown.  Then I feel slow and low, low down.”

I like to think I’m pretty tough, but this has taught me that sometimes I’m just not.  Pain is exhausting.  It makes me crabby and  lowers my patience.  Steve is much happier when I stay on top of the pain meds, and so am I.  I’ve learned that the importance of sleep continues to be underrated in this country and it’s tough to sleep when you can’t roll over without groaning and letting out an expletive;  tough for both of us.  I met with my doctor again last week and was truly surprised at how much the pain had increased.  This of course bought me another set of bone and CT scans to make sure nothing else has grown.  Bone and CT scans aren’t the best way to look at lobular breast cancer, but it was too soon for insurance to pay for another PET scan.  Based on these most recent scans it looks like my rib met has increased a little bit and so has one spot on my spine.  Nothing really huge, but enough to know that the treatment I’m on is no longer working.

“On purple days I’m sad.  I groan. I drag my tail.  I walk alone.”

Monday I went into Abbott and had a port placed.  I’ve been lucky and unlucky that I haven’t had this yet in 9 years of treatment.  A port is a device placed under your skin.  It is connected directly to your vein and makes it easier to have labs, chemo and contrasts for scans and other tests.  I have pretty terrible veins and sometimes it’s an event in itself to get an IV in me.  This will make things much easier, but on the not really important, but still kind of stinks side of things; it means I have another scar and another “thing” in my body that just shouldn’t be there.  Next Thursday I’ll start IV chemo.  There are no other oral chemo pills for me to take at this time.  Cancer will now get to run a little bit more of my life.  I’ll head down to the oncology office one day a week for three weeks and then have one week off.  Treatment should be fairly quick, about 2-2.5 hours.  I asked my doctor how long I’ll have to do this.  Here’s what he said ” Until this works like a charm and kicks back the active metastatic lesions, ( MY first choice), or until the cancer grows and we know it’s not working and have to switch to something else, (another IV chemo) or until we figure out you are not tolerating it well and we have to switch.”  In other words, welcome to the new reality.  It also means I’ll be “outed” as a cancer patient. I’m going to lose my hair again.  As annoying as it can be sometimes to feel really crappy and still have people say how great you look, I have enjoyed being able to be incognito as a cancer patient.  I can still wear a wig, but it won’t be the same as having hair no matter how great the wig is. So, how do I feel?  I’ve felt just like Dr. Seuss describes.  I’ve had all kinds of emotions.  Anger, fear, sadness, loneliness and then round about back to acceptance.

Green days. Deep deep in the sea.  Cool and quiet fish.  That’s me.”

People say they admire my bravery, courage and strength.  I want everyone to know that I don’t always feel that way.  Sometimes I’m not brave and I don’t have a lot of strength.  I cry, I get scared and I lose faith.  This cancer is not a gift.  It can teach me things, but I have to choose how and what I’m willing to learn.  I have to make a choice some days to get up off the floor and to act like I have faith even when I’m not feeling it.  There are nights I go to bed and will wake up with a panic attack; scared and wondering how I’m going to make it through this.  How much will it hurt?  How long will it go on?  How much can I really handle before I fall apart?  It’s then I have to remember to grab on to the tiniest of things to be grateful for and hold on for dear life.  I whisper to God that I’m losing it and need help.  I don’t always feel calm right away, but I keep remembering that I need to quit thrashing and start floating.  So I take long, slow deep breaths.  I keep telling myself it’s going to be ok until at least my heart and my body start believing the words and i can go back to sleep. And basically, that’s how I manage cancer.  One day at a time, one moment at a time.  I practice gratitude, because I know there is always someone out there going through something harder than I am.  I leap blindly with faith and hang on to the belief that somehow this will be manageable and I’ll make it through until the end.  I cry and despair and then I get up and live another day.  Some days with more grace then others.

“Then comes a Mixed-Up Day. And WHAM!  I don’t know who or what I am. But it all turns out all right you see. And I go back to being…me.”

Fitted Sheets

I was fortunate to have a grandmother who loved me unconditionally.  She was always there to spoil me and help me feel safe and loved throughout a tumultuous childhood. It was tough on my heart when she died, but I’ve always felt she stayed close. imageIt’s a part of life to learn about our faults and hopefully, improve on them. I tend towards procrastination and as I grew older and tried harder to remedy that fault I’d often hear her whisper to me “It’s a 1000 times worse thinking about doing something then it is to just do it.”  I started to apply her words to many things in life and found to no great surprise, that of course, she was right.  Sometimes you just need to take a small bit of action in the direction you need to go and things will start to fall into place.  I think some people might call that doing it one small step at a time.  I call it “folding the fitted sheets first.” Who loves to fold those suckers?  They never leave me with the same sense of control and satisfaction as well-behaved flat sheets with their right angles and smooth, precise finish.  Nope, no matter how many Martha Stewart clips you watch on YouTube, there is really no way to walk away with the same sense of control and smug self-satisfaction you can get from a calm flat sheet, or better yet a pillow case!  Now those babies are satisfying.  That’s why I fold the fitted sheets first.  I’ve trained myself to get the harder stuff out-of-the-way.  Ask me good news or bad news?  I want the bad news first.  Until this past week that is. I’m starting to rethink my “hard stuff first” philosophy.

“Dance like you’re Jimmy Fallon”

In Cancerland, my trip to the emergency room didn’t register. It was nada, so small in the scheme of things as to hardly constitute a roughness in the pavement. There are so many more of my fellow cancer friends who have it much worse right now. But it sobered me.  It was a reminder of how close to the edge I’m living and how quickly things can turn into a non-stop avalanche. One day you’re dancing and celebrating with friends and loved ones and the next you’re close to being admitted because your white blood cell count could be non-existent and you have nothing in you to fight back with.  Thankfully, my counts were low, but not dangerously low.  It was a reminder that I need to be more careful about what I expose myself to and what my immune system can handle.  It was a scary experience for Steve and me. I think we both were wondering if this was the start of a downhill slide. How many more trips like this will there be?  Just normal fears when you have cancer.  Sometimes they linger in your peripheral vision, hovering around like gnats on a spring night.  You know they’re there, but you don’t always take the time to stare them down, that is, until they fly up your nose.

To add to the stress, its my week for scanxiety.  I had my PET scan today to see if the cancer has spread, or if the Ibrance is working and holding things at bay.  Every time I lay in that machine and it scans up and down my body I’m thinking “find it, don’t let it hide, if it’s there I want it found.”  Because of course, I like to know what I’m dealing with.  Unfortunately, I’ll have to wait a few more days for those results. After the last couple of days I’m thinking I should throw caution to the wind and fold the flat sheets first.  Heck, I might even start wadding those unmanageable fitted sheets up into a ball and calling it good.

This picture is looking all too familiar.
Just another day in radiology

Disclaimer:  Chemo brain is in full effect, along with a bit of dizziness from my current drugs.  I guarantee there are punctuation and spelling errors.  I did try and proofread.  So be kind and ignore them.  🙂

108 Every Day

Yesterday I celebrated my 53rd birthday, my fourth birthday since being diagnosed with metastatic breast cancer (mbc). While I was able to celebrate another year of life, 108 others with mbc in the United States died. Today, another 108 people will be robbed of their next birthday and tomorrow 108 more.  Each and every day 108 mothers, sisters, friends, cousins, husbands, brothers and sons with metastatic breast cancer die. It has to stop.

This past weekend I attended the Living Beyond Breast Cancer conference in Philadelphia with over 300 others with mbc. The conference began by asking those in attendance to stand up according to the number of years they have been living with mbc.  First, those diagnosed 2 years and less stand, then those diagnosed 2-5 years ago and then 10 years or more.  The largest number stand for 2 years or less.  By the time we get to 10 or more years there are only a handful standing.  We clap and applaud these exceptional outliers, each of us secretly hoping that will be us some day, but knowing the reality is unlikely. From 2000-2013, 15 billion dollars was raised for breast cancer research,  but of that 15 billion less than 7% was spent on research for metastatic breast cancer.  You can read the study in its entirety on the MBC Alliance website. This year the LBBC conference trained its first group of Hear My Voice advocates, but advocacy takes time and time is one thing people with mbc don’t have, so out of frustration a die-in was organized, Why I Organized a Die-In, and Philadelphia Story.  108 of us gathered together and got down on the floor. We closed our eyes; some of us holding hands, and recognized our greatest fear. It was hard, really hard, lying there and knowing that one day I would most likely be one of the 108.  I lay there thinking about all of the things I was probably going to miss, my son’s graduation from med school, grandchildren, vacations, all of the milestones and memories that make life so precious. I thought of the increasing number of young women being diagnosed with mbc and what was going to be taken from them. The picture of us is dramatic, uncomfortable, but mbc is not pretty. It’s hard to visualize the reality of living and dying with mbc when others look at me. I don’t look sick.  There is a lack of congruence when you see me and think of the 108 who die each day.  But when I was on the floor with those other 107 the reality became evident.  My hope is that someday mbc will become a chronic illness, similar to what we’ve been able to do for AIDs.  People with mbc are starting to develop their voice, I hope the world starts listening.

One Week

It’s been a crazy week.  Last Wednesday we meet with my oncologist to go over my blood work and scans.  My scans didn’t show any major progression, but my tumor markers were almost as high as they’ve ever been.  There are many different kinds of breast cancer.  I have lobular breast cancer and one of the characteristics of lobular breast cancer is that it tends to grow in a more diffuse pattern and it can be much harder to detect its spread in ct/bone scans.  Tumor markers don’t tell the whole story either.  For some people they are totally unreliable.  However, in my case we have 9 years of data on my markers and know that they are a pretty good indicator of what’s happening in my body.  I’ve also been having some more pain in my back and other areas.  All of this information put together lead my oncologist to determine that the current drug I’m on is not working.  I agree. Problem is, the next course of action is IV chemo. There is one new drug that was just approved this month called Ibrance or pablociclib, but the chances of it being available and approved by insurance were very, very slim.   So, I was scheduled to have a port placed in my chest this morning and to begin my first round of Abraxane.  I’d receive an infusion once a week for 3 weeks and then have one week off.  This would continue indefinitely.  One of the major side effects of Abraxane is hair loss.  Darn!  I was ready for moving to IV chemo, I knew that was the next line of treatment,  but I hadn’t quite prepared myself for being bald again.  I didn’t wear a wig last time, but this time I went to the wig store on Saturday and was fitted for a wig, then I called my hair stylist and scheduled an appointment for this Friday to have my hair cut short.  You usually lose your hair within 3 weeks or so on Abraxane and having it cut short now would make it easier for me when it started to fall out.   On Monday my doctor called me back.  He had been talking about my case with other doctors in the oncology clinic and one of them had just been able to obtain Ibrance for a patient in the clinic.  Hold everything!  So, we decided to cancel the surgery for this morning and see if we could obtain the drug.  Ibrance is a new oral drug that works differently from other aromatase inhibitors I’ve been taking.   Most drugs currently available for er/pr+, Her2- breast cancer target the hormone receptor pathways and try to disrupt those pathways.  Ibrance takes a different approach and targets a family of cell proteins (CDK4/6)  that are responsible for cell growth and stops those cells from dividing.   Well, I just received the call today that insurance has approved my trying this drug.  Whew!!!  Talk about in the nick of time! Need I say more about the importance of additional research for metastatic breast cancer and treatments?  It’s unlikely that when this drug stops working there will be another newly approved drug to take its place and I will have to start IV chemo.  But for now I’ve been given a period of grace.  There will still be side effects and I’m hoping I handle them well.  I’m heading to Europe in April and for me this is all about quality of life and being able to have a great trip with my friends and my son.  We’ve talked about this trip for years.  We had always said that when he was accepted into med school we’d go to Europe together.  It was making me pretty sad to think that the pictures he would have for memories would be ones of me in a hat or scarf and looking like a cancer patient.  I’m pretty happy with flying under the radar sometimes.   It’s funny how having your hair allows you to look normal and healthy even though you are far from it.  So today I was grateful that I was at the club exercising instead of waking up in the recovery room and then heading over to oncology for my first infusion!


It’s scan day.  A day most everyone with cancer dreads.  We even have our own word for it “scanxiety”.  Normally I sail through these days.  But today feels different.  I think it’s because the last few scans have been pretty darn good, very little progression shown in terms of cancer growth, we’ve been holding things at bay.  But, I’ve had issues with my drugs lately, and even with the last one we’ve had to reduce the dosage because of side effects I’ve been having.  So I wonder “has it been enough?’  Each time I get in one of those tubes I think about where those cancer cells may be hiding.  I talk to my body and tell it to spill all.  No hiding those buggers anywhere.  I think about my immune cells and what they’ve been doing to help me.  I think about how well the rest of my body has been dealing with the rogue faction and say a little “thank you.”  I also experience a wave or two of  pure fear and worry.  It’s not a unique perspective, but I feel like I’m playing Russian Roulette.  Each time I have a clean scan I know the odds are higher that the next one won’t be that way.  There’s no place like the inside of a huge metal tube to have a little anxiety attack.  That’s when I probably have the best little talks with myself.  “Remember to breathe” I say.  “Remember to think of things to be grateful for” I quietly sigh.  And that’s when I bring you all into the tube with me.  I think about the many little things you’ve done to support me and my family and the kind words and cards.  It’s another reason I’ve been so grateful to have this time to travel with Steve.  I have a few of my favorite views in my head.  I’ll see something beautiful and think, “Now that’s a good one to remember during a scan.”  So wish me luck today. I’ll be thinking of all of you!




Can’t believe a month has flown by and we’ve gone from a beautiful fall into a hard, cold winter.  Boom!  After seeing the cardiologist and numerous tests on my heart we figured out a few things.  First, I have a strong, healthy heart.  Second, the Xeloda drug was causing the arteries of my heart to spasm and giving me angina.  I was also experiencing headaches and dizziness which I thought was going to win me a trip to the MRI and a brain scan, but fortunately all of the symptoms went away when I stopped the drug.  I also learned a lesson about my self.  I tend to minimize any symptoms I have and was forcing Becky to still go on walks with me despite the “heartburn”  Thankfully, she still loves me.

So the good news, bad news is I’m fine, but it also means I’ve blown through a treatment option.  Next up is the Afinitor/Aromasin combo.  Another oral chemo.  This one packs a heftier price tag however.  $12,000 a month.  Yep, $400 a pill.  Thank goodness for insurance. Did you see the 60 Minutes segment on the high cost of cancer drugs?  Hit home for me.   It does make me evaluate how much good I’m putting into the world each day.  I say that a little tongue in cheek.  I know I’m worth much more than my meds.

Which brings me to compassion.  It’s pretty easy to look at me and think everything is great in my world.  No one would know that I have a less than 25% chance of living 5 years, that my spine is covered in tumors and I have a few more in my leg.  I’m fortunate in that I have a high pain tolerance, and really, if I’m good in what I do I can manage my pain.  Fatigue is another invisible thing.  Sometimes I’m just wiped, lower than that actually,  but you wouldn’t really know it by looking at me.  I keep exercising because my doctor’s say that’s better than anything.  Even though some days I almost break down on the machines because that’s where I feel what I’ve lost more than most places.  I’m officially a wimp, but a stubborn one.  I realize how invisible what I’m going through can look to people who don’t know me. Even to people who do know me, really.   It got me to thinking about other people I see out and about everyday.  At school, at the grocery store, cutting in front of you on the freeway.  We know nothing about their stories and what they may be dealing with.  I’ve learned that whenever I give a talk about my story to always assume there is someone in the room who is dealing with more. We all have our stories.

It might not be as life threatening, or maybe as large, but to that person it’s everything.  We sometimes minimize our own worth and the value of our feelings and emotions.  We downplay them and say “we’re fine” when we are really too afraid to reach out.  So the next time you see that crabby person, or the dour looking one, or the tired one think about the story that might be there, invisible and in the background and offer a smile, or just a silent word of compassion.  We’re all human and it’s our connections that make us so. Remember, we all have hard things, together is what gets us through them.