Tag Archives: faith

Early Evening

Most of you are aware by now that I entered hospice the beginning of February. I went to see the Wizard for my next dose of chemo and he walked in and said it was time to stop treatment. The chemo drugs, and every other form of deterrent we had tried had stopped working. My tumor markers kept going up, and not just in small increments, but by the 100’s. One week they were 700 and the next time they were over 900.

I stared at the Wizard for a moment, my heart beating and that pit of helplessness forming in my stomach, oddly enough, I began to feel a bit of relief. The Wizard had kept his promise. Way back in the beginning of this metastatic treatment plan, I had asked the Wizard to let me know when he thought I should stop treatment. I had seen too many others keep treating until they were frail and very sick. I didn’t;t want to do this. I would feel like I had missed time the time to say good bye. To talk to each other about what we really meant to one another. I wanted time at the end to say goodby. Many others make other choices, This is a horrific disease. It takes away so much and we should all honor each other’s decisions. I could not be more proud and happy, yes, happy, about the way my medical team had treated me for the last 13 years. They had become family. I knew they really cared about me and did their best to keep helping me achieve my goals while living with MBC we’ve made almost all of them, with one left to conquer this May.

This has been hard and scary. Thankfully I also have an amazing hospice team. They are phenomenal and I really mean that. I have the fierce and protective love of a friend who is determined to keep me safe, comfortable, and rested. Everyone should have someone going to bat for them like this. Beyond my friend, there is my wonderful husband and family, and a group of amazing friends and caring community.

I feel my medical care has been beyond exceptional. Did I get a second opinion? Yes I did. Did I try every nutty suggested cure out there? Well, within reason. I grasped at straws as much as the next person. I will say that I think exercise and nutrition did support me.

It’s a shocker to change your way of thinking from “what can I do to get better?” To one of finding peace with those I love and getting my soul ready for what comes next.

This has been extremely physically painful. When I came out of the hospital in January I had 6 compression fractures and at least 5 broken or cracked ribs. Since then I’ve had two more what I would call “crisis” incidents where the pain is so bad I wonder how God expects me to handle it. The hospice team and I are still learning about each other. Most of the problem is me, not trusting their expertise. I’m getting better at this. When I do, the pain is dealt with more quickly, but I have to balance the pain control with feeling loopy and sleepy.

I’ve been trying to write this for weeks, but I’d keep falling asleep while I was trying to type.

There are so many things to talk about and explain. It’s impossibly hard for me to watch how much pain I am placing my family and friends in as they watch me deteriorate. I’m even surprised by that. Most of the time it’s hard to imagine I’m in hospice (at least my vanity likes me to think so.) But as more and more medical equipment begins to fill my bedroom, I’m starting to think it might be true.

Wednesday it looked like I was ready to die in a week or so. I was hunched over and I was unstable when I walked. I was horrified as I realized I was starting to look like I belong here, on a road of transitions. Its heartbreaking. I manage more grief then anyone realizes. My loss is incredible and sometimes I let myself feel the burden of all of it so I maintain my sanity. We need to feel the intensity of our emotions sometimes, or we will loose site of our humanity.

Odd to be using face lotion and notice that its running out and think to myself, “should I buy a new one, or will this make it?

I feel overwhelmed when I try and think about what I should leave for the boys to remember me by. I freeze when I think of the enormity of the task. How can I put all of my love into some kind of momento? My heart breaks when I see my husband break down. My sons, 2 amazing human beings have been living within the all consuming grip of cancer since 8 and 5th grade. They are now 27 and almost 25.

But, as they have said, they appreciate how this has taught them to appreciate and make time for those they love and they like how hospice actually gives them time to say goodbye. They’ve taken turns in small ways of taking care of me. Luke and Jacqueline were phenomenal when they were here last week. Ranen does small things to show he cares and is noticing.

I think I still have a ways to go before I die. I plan to still be here for our May event. But if there is anything I’ve learned about this disease it’s how fast things change. I test my will and we’ll see how far my body will take me. Each week there are small changes I hate to see. But, I focus on the present as much as I can. I continue to advocate for mbc.

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.”

Faith

“I’ve learned that people will forget what you’ve said, people will forget what you did, but people will never forget how you made them feel.”  Maya Angelou

The past few weeks have been interesting, to say the least.  My last treatment protocol has stopped working so it’s on to the next option.  I’ve just finished my first two weeks of my new drug, Xeloda, which is an oral chemo pill.  I take it twice a day for two weeks and then get one week off.  I’ve had some nausea, and much more fatigue.  My walks have turned into “strolls.”  I’ve also had some chest pains which we are trying to figure out.  Lot’s of appointments scheduled with the cardiologist this week.  I’m hoping that my body is figuring out this new drug and that things will get easier.  I think they will.  I’m nothing, if not adaptable.

The last weeks have also been full of grief and memories.  My wonderful “Uncle Moose” passed away unexpectedly on October 10.  Every child should have an Uncle Moose in their life.  He was as big in personality as he was in stature.  ” 5 ft. 20 1/2  inches” as he’d say.  He believed in having fun, lots of crazy fun, but was also extremely safety conscious.  He made me feel safe.  Whether it was teaching me how to scuba dive, or rappel off a cliff.  Those are things I would have never tried without him.  I trusted him.   We are a family of swimmers, and one of my first memories of Uncle Moose is of him teaching me how to dive.  I remember standing, shivering on the end of the diving board.  A tall, skinny girl looking down and thinking the water looked a million miles away.  But Uncle Moose was there calling to me and letting me know that he would be there to keep me safe.  And so I dove.  He taught me how to float on my back too. I think of his words often in my current situation. Sometimes, the more we struggle the more we sink.  In order to float you have to let go of the fear and anxiety.  You have to let go of the unknown.  You have to trust that the water will hold you up.  You have to have faith.

Uncle Moose