Tag Archives: balance

A Bad Day

It’s hard to start with that title because right away you are already thinking “oh no! What can I do to help and how can I fix it for you”. I always win on the scale of all Bad Day scales. It has been a bad day, a hard day, a down day. I wrote about this once before with my Colors blog post. I’ve gotta say though, bad days are getting harder. I hate writing about them because I do suffer so strongly with the “Good Patient” syndrome, the “I just don’t want to make it harder for anyone by venting” syndrome.

Today I’m going to practice venting. I don’t do it very often because I really do believe we can choose how to live each day, but I know that doesn’t always work. We all have crap days, and the more honest about those days we are, the more we can help others who have crap days.

It starts when I get out of bed to go the bathroom. Sometimes I dream about just getting up and moving freely. I’m sure people who are paralyzed must do this. I think I have my long hair back for a second and make a move to brush it off my face, I go to stand up and then I remember it all. My whole torso hurts with the strain of standing up. I can’t stand up straight, no matter how hard I try, and when I go to take a step my right hip gives just a bit, but then my left hip hurts as I shift weight. I hope this is not what feeling old feels like. But, then again, I have to love the dark humor. I’m living to 57, but I know what it feels like to be 115, so who’s saying I died before my time?These last few days have been tough. I reached out to pick up my full glass of water with my arm straight out and pulled a muscle somewhere in my shoulder. It honestly hurts so bad that I’m having trouble making certain movements with it. I can’t hold it out straight from my body or lift it straight out. I’m not sure if I tore it, or pulled it, but I did something to it. There is the realization I can no longer walk more then 20 feet without a walker, and I need a wheelchair for longer distances. Then shame of all shames, I step on my toe so hard with my walker that I’m pretty sure I’m going to loose a toenail out of it all. See, you squirted wine or beer, or something, out your nose after reading that one, I know.

I say, “I want to go into Town” to get out of the house and out of this damn bedroom and bed (which I honestly love very much). But, by the time I’ve washed my face, brushed my teeth and gotten dressed, I have to lay down on that damn bed once again, because it hurts too much to keep standing. Of course, the other downer here is that I’ve been using a walker to get from one place to another this whole time.

We go to a beautiful restaurant and we sit outside and soak up the sun and beautiful day, but then I start crying on the way home because suddenly I realize that what I really want, is to be sitting on the boat drinking margaritas and listening to Steve’s old country songs. I get mad later as he leaves to go fishing, I suddenly feel like a carton of milk being put in and out of the fridge and Steve is just dumping me back in the house and leaving to do fun things whenever he wants.

How stupid is this all! But, the feelings are real. I’m feeling so lonely, even though I’m surrounded by people who love me. We must need to do this as a part of dying. I’m starting to feel this weird separation, and sometimes while I’m sitting with others, I suddenly see the room without me in it. I have to, or I am, starting to let go. I’m starting to feel the separation of spirit and body. It’s hard to explain. But I can feel my cells have stopped growing normally and are slowing way down. My body is starting to choose to stop rejuvenating each day. Crazy to say I know, but it’s what I think about and what I’m feeling. My hair isn’t growing as fast and my nails have slowed way down. And don’t you dare tell me to keep fighting, or to try harder. I have tried my best, but this was always going to end one way, with me dying. The reality is this disease is terminal, not chronic and definitely not one of the “better” cancers to have. Especially with 114 people dying from it each and every day. This is one of the reasons funding research is so important. Thinking about research dollars just adds to my bad day. With only 2-7% of all breast cancer dollars going to metastatic breast cancer research. Calling metastatic breast cancer one of the easier cancers is just a side effect from the in your face pink washing days. Trust me, no cancer is an “easy” cancer to have. They all stink big time.

Admitting the time is getting close takes a little bit of bravery. Being brave doesn’t mean you aren’t scared to death, ( no pun intended) I’m just a person trying to figure this out as best as I can.

Tomorrow will be different. I’ll wake up hurting, but my attitude will be a little better. I am sleeping well and starting again in the morning is always a plus. I also have the help of some antidepressants. Another area we don’t talk about enough. We live in an unbelievably difficult world, most of us are going to need some help at some point. And if you don’t believe that is true, then you really do need the drugs.

I dig out my old friend, Gratitude, because I can be thankful for being a crabby jerk. Thankful, because I know feeling like a crabby jerk is real and those hard emotions have to be felt and endured. Grief is becoming more of a daily occurrence. The loses that I’m feeling are becoming bigger and harder. I’ve learned I have to let myself feel these crap emotions. I used to freeze and go into deep depressions during parts of my difficult childhood. The trauma was so real back then, the only way to survive was to not feel. But, I’ve learned through lots of practice and therapy, that you must lean back and float into all of these hard emotions. Let them pass through you, but, feel them all, you must. Otherwise, you risk becoming a hard shell of no emotion.

The other thing about dumping my feelings is that it’s harder when you’re dying. You are already hurting so many people by dying ( and geez! does it have to be taking so long!) that you don’t want them automatically racing to fix it all. I already feel so grateful and yes, overburdened, with the help I know I can never repay. I remind myself a hard earned lesson, how would you feel and behave if it was someone you loved and not yourself? Yea, right, check feelings of guilt. It usually takes me a few tries. But honestly, trying to find, yes, struggling to find, my reason to be grateful does the trick on everything else those handy drugs failed to manage.

I’ve started saying this meditation every night before I go to sleep, it’s from Where Healing Begins by Mishkan R’Fauh.

Meditation on Healing

When I panic, God, teach me patience, when I fear, teach me faith. When I doubt myself, teach me confidence. When I despair, teach me hope. When I lose perspective, show me the way- back to love, back to life, back to You.

I’ll meditate with this and say it many times tonight with the hope that tomorrow will be a better day. Today was just one of those bad days. Even writing this blog has helped me to start feeling more hopeful. Thank you for letting me vent. I’m so sorry it hurts you and makes you cry. As my friend Kelly Grosklags says “we experience grief because we feel love. And I do love you. That’s why leaving is going to be so hard. It’s grieving the loss of those I love and missing out on the wonderful future that’s to come. Damn I would have been an incredible grandma, and damn I miss my old self.

I’m not Dead Yet…,

Here I sit in hospice twiddling my thumbs, so to speak. It’s been an interesting few months. I’ve been dealing with this breast cancer for 13 years. And my number one way of “dealing” with it has been learning all I could about it and understanding what I needed to do to knock it back. I’d have scans, and blood work, and different scans and more blood work. I always knew where the cancer was and what it was doing.

It’s completely different in hospice. There is no blood work to let me know how fast the cancer is growing. There are very minimal scans to tell me where its at. I’m having to just lean back and float. I’ve always been very intuitive with my body, but I liked having the science to back up what I thought was happening. Now, I’m just having to trust my own intuition. And so here I sit. Waiting to die. And you know what? I’ve discovered it’s really not that much different then living each day. I get to do what makes me happy and then I nap. Then I make some plans for the near future and I nap again. Napping is great! If you aren’t taking Sunday afternoon naps you sure should be. There’s no better way to charge up for those Monday mornings.

Champagne on the daily.

Last month I made it to Kirksville to see Luke and Jacqueline receive some wonderful awards and graduate from medical school! I so vividly remember his white coat ceremony 4 years ago and wondering if I’d be there for graduation, and I made it!!

Hospice was a tremendous help. They contracted with a hospice in Kirksville and had a hospital bed moved into my hotel room. That made all the difference in terms of my comfort and my ability to participate. On the way home we stopped at Macdonald’s and I got a chocolate shake and French fries! And that’s it. The only thing I didn’t do was dip the fries in the shake. A small error, but I still have time to rectify things, I think.

I’ve been dealing with quite a bit of pain so we also scheduled some radiation treatments. I actually had just one treatment, but it was to my sternum, T4-T10 and my lumbar spine. It was absolute torture getting on and off of the radiation table, but it has made a huge difference in my pain. I’d go through it again if I knew the pain trade off would be the same. This is considered comfort care and not treatment. It;s not enough radiation to kill back the cancer cells, just enough to knock back the pain and make my time in hospice more comfortable.

It is a weird thing, sitting here in hospice, doing relatively well and wondering when the next shoe is going to drop. I’m trying to make the time useful. We have my Celebration of Life basically planned out, I’ve got some other projects I’m almost done with for friends and family. So now, I just try to enjoy each moment and soak in the love from everyone and give love back. I’m blown away by how many people have signed up to help me. No one really trusts me to be alone. If I fell, well, that would be a really bad thing, so I’m using a walker or a wheelchair almost all of the time now. I’ve gotten a little less sturdy, but not too bad. I can still go up and down the stairs and I make sure I do it a couple of times each day. I’m fighting a lack of appetite right now. Nothing is really sounding good. Not even my reliable ice cream. I’m not wasting away though, so there’s nothing to worry about there.

The next big adventure is to plan a trip to see Luke and Jacqueline and their new house in Dayton, Ohio. After that is Wine Night! I honestly did not think I was going to be here for that, but it sure looks like I am! I’m thrilled. We’ve had some great responses for the seed grants you have helped us fund and we can’t wait to tell you about them on Wine Night.

We hope to see you for this year’s Ladies Midsummer Wine Night. It’s our 9th year! That’s incredible. Here’s a link to more information, and if you wish to donate you can use this link. Thank you!

Here’s Steve having some summer fun.

Oh, I almost forgot, I bought more face lotion.

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.

Catching Up

I’ve been hiding. There were so many deaths from MBC of people I cared about. I needed to take a break. But, it’s time to catch everyone up. Last summer the CMF treatments did cause problems with my heart, so as many of you know I started “the Red Devil”, adriamycin. The good news is it really worked! The bad news is, it has affected my heart. It’s just minimal, but enough to put me on 3 heart meds. That’s taken a little bit of adjustment. When I started adriamycin my tumor makers where at an all time high. Almost 400, however the adriamycin knocked them down to 69! There is a lifetime max of how much of this drug I can have because of the cardio toxicity it can cause. I was almost at the max when we stopped treatment in September. Since I’d had such great results from on it we gave my body a break and I stopped IV treatments for a few months. Well, break time is over.

I was not surprised when I saw the doctor last week that my markers were up. They’d jumped from 70 to 124. I’d been having quit a bit more pain. We scheduled a PET last Thursday, and I started abraxane yesterday. I’ve been on this before. It was still working on my cancer when we stopped it two years ago. Here’s hoping it will do the trick again. Bad news is that hair loss number 4 is coming up. This stuff makes me a cueball. Eyelashes and brows will go too.

The PET scan confirmed that I’d had progression and the cancer is growing. It also showed a possible spread to my organs. There was some movement artifact in the films and this made it hard for the radiologist to see if the spot was in my liver, or the very bottom of my right lung. There is a slim possibility that this is not cancer and it’s just artifact looking like cancer. We’ll be scheduling a new scan in a few weeks to confirm. Even if I do have progression to my liver we’d still continue with the same treatment protocol.

I won’t lie, This is getting hard. I was surprised at how much I struggled with my emotions when I was on my chemo break. I had so much to be grateful for and, I was but, I couldn’t stop wondering when it was going to come tumbling down.

This is a hard time of year for many people. It’s been hard for me. Looking forward to Christmas and the holidays is wonderful. It’s the putting stuff away that’s tough. I can’t stop myself from wondering if I’ll be here next year. I obsess over how detailed of directions I should leave on what goes where. Will they know where to hang the Mistletoe Santa? Will they remember what I’ve shared about the special ornaments and the history they tell? If I am here, how sick will I be? If I can’t flame the house down with the Beef Wellington sauce who will? Traditions are important. They tell family stories and create family identity which is an important part of strong family units.

Some times you have to search long and hard for that blade of green grass when you’re laying in the mud.

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!

Waiting

Here I sit.  Waiting for scan results.  It’s not much fun.  Somedays I handle it better than others.  I keep trying to look inward and make a guess as to what’s going on in my body.  Has it spread?  Gotten better, stayed the same?  All the while trying to live a normal life and keep things in perspective.  I seem to live out my life in 30 day increments now.  If my markers are looking good I let out a sigh of relief and push things down for another 30 days until the next doctor’s appointment and treatment.  It’s a different way to live.  I’ve been making travel plans, but my markers are going up and I start to wonder how I’m going to feel in 2 or 3 months.  I don’t know for certain.  I bought travel insurance for the first time.  Seemed like a prudent thing to do.  Yep, for me having cancer is like doing Tree Pose.  Some days my balance is better then others.  When I’m wobbly I have to just accept it and feel what there is to feel.  Emotions are ok.  There are no good or bad ones.  I can be scared, angry, sad, and irritated and it’s all right.  There is no “right way” to do cancer.  There is only “my way” and I can’t get it wrong.  When I’m ready, I’ll push myself up off the floor and choose to be grateful for the little things.  I’ll try balancing again and it may be easier, it may not.  But I’ll accept myself where I am.Pet Scan

 

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.