Tag Archives: cancer

October Then and Now

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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.

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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.

 

 

 

Colors

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.”

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!

Gotta Start Somewhere….

I’m going to break the rules right off the bat and admit that this blog isn’t going to be about cancer all of the time.  I like to cook, so I might share some food porn and a recipe here and there.  I’m also a licensed Parent Educator and I may feel the need to occasionally hop on that soap box  and talk about early childhood development.  I’ve followed the rules most of my life and I’m spending the last of them trying to be much less compliant.  Guess I’m a rebel with a blog.

A Rebel with a Blog
A Rebel with a Blog

Here’s the shortened back story.  8 years ago I had a mammogram in December.  I was 43 years old.  All was clear.  About a month later I started having the same  dream repeatedly.  I’d awaken each night at the same time,  agitated and afraid. I would tell myself to remember the dream in the morning.  The next day, I’d remember that I’d had a dream, but could never recall any of the details.  A few months later in March of 2006,  I found a lump in my right breast.  Turns out I had invasive, lobular carcinoma.  The night after the nurse called with my biopsy results I had the dream one last time and finally remembered it the next morning.  I haven’t had the dream since.  I dreamt that I was lying in my bed looking up at the ceiling.  There was a large, swirling black cloud that was gaining speed and intensity.  With a force I could feel, it swooped down and hit me right in the chest.  Actually, it hit me right where I found my lump.  How weird is that?  I’ve learned to trust my intuition and I’ve come to believe that somehow I knew something was going on with my body, but I just wasn’t paying close enough attention.  My dog also knew something was up.  He started following me everywhere.  Like glue.  I just couldn’t shake him.  It felt like I had a stalker with four paws.

I started out by having a lumpectomy, and then a mastectomy when the doctors had a hard time getting clean margins.  I decided on a single mastectomy.  There was no lymph node involvement.  I was a stage 1 and felt very lucky to have caught things early.  I had 4 rounds of A/C chemo and then went on Tamoxifen for 5 years.  The hot flashes were hell! A month or two before my 5 year check up I remember noticing that my dog was stalking me again. A little warning bell went off in my head, but I ignored it.  I saw my doctor for my five year check up.  We did the normal labs, he gave me the all clear and I floated out of the office.  I was so HAPPY to think I would never have to see that place again.  Two days later the nurse called to let me know that labs were back and my tumor markers were elevated.  Que the tragic movie score. Rounds of needles, scans, and phone calls later I learned that the breast cancer had metastasized, or spread to the bones in my spine. I’d gone from a simple stage 1 to stage IV just like that.

This is where you learn that Pink is Complicated.  It’s been 3.5 years and I’m still learning. It’s just not as simple, easy and happy as the color sounds.  There are many different kinds of breast cancer and all of them have different treatment options.  30% of all women ( and men get breast cancer too) who are diagnosed with breast cancer will go on to develop metastatic breast cancer.  Cancer that stays in your breast doesn’t kill you.  It’s when the cancer travels to other areas of your body that you’ve pretty much lost the war.  You’ll win battles for awhile, but the reality is that metastatic breast cancer is stage IV and there is no stage V.