Tag Archives: gratitude

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!

Scanxiety

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!

Finding Equilibrium

“How do you do it?”  I hear it over and over again.  How do you live with a diagnosis of metastatic breast cancer and continue to live your life in a positive and productive way?   We all have hard things in our lives.  All of us.  No one has it easy all of the time, but some people do seem to be able to weather the rough water, bumps, obstacles and tough spots better then others.  What’s the difference?  Sometimes I look at having cancer as trying to learn Tree Pose. In yoga, Tree Pose is when you balance on one foot and lift your other foot and place it somewhere on your opposite leg.  As you get stronger and find your center of balance you’re able to place one leg higher, lift your arms higher over your head and find yourself feeling grounded and strong, just like a tree that’s been there forever.    The trick is to ground yourself and to not condemn yourself when you loose your balance.  If you start to fall you have to let the self-judgement go.  The more you talk down at yourself for not finding your balance, the less balanced you’ll be.  If you just let it happen, accept where you are that day then you’ll find your center again.  It’s curious how this pose can be easier or more difficult from one day to the next.  Some days it’s just hard to find that balance, that sense of calm and grounding. Living with a terminal, chronic illness is the same.  Some days it’s easy, others it’s hard.  There is no magic answer.  I have found that the more I choose to be grateful and ground myself in the present moment, the better the day will be.  If I’m in pain, I’m tired or I’m frustrated because I’m just not getting everything done that I thought I should be getting done or even wanted to, I need to let it go.  Refocus on where I am at and think about what’s good about that very moment.  Having gratitude and finding balance isn’t always pretty.  Sometimes you just do it because you’ve made a choice to.  Somedays I can’t do Tree Pose as well as I used to before cancer.  I let that go too. I do the best I can.  I forgive myself when I fall and I choose to try again.  Sometimes, I let myself stay on the floor for a bit and study where I’m at.  Sometimes I pull myself up, other times I have help and a friend reaches out.