Tag Archives: gratitude

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.

Changes

The last two months in Cancerland have been challenging. The week before Thanksgiving my pain levels increased dramatically. It is still hard for me to process how quickly I experienced such a dramatic change in my quality of life. My back started to hurt a lot. I experienced spasms every time I tried to stand or get up out of a chair. I couldn’t sit very comfortably either. I was able to get somewhat comfortable if I was in bed with my back elevated and had pillows under my knees. There was no real injury. I think that the levels of cancer in my bones and spine grew to such an amount that nerves started to become involved and I started to hurt more.

Currently, my whole torso is painful and I’m still in pretty much the same place pain wise. Both sides of my rib cage are extremely tender and it hurts to take a deep breath. My back is hurting everywhere and I have issues with trying to stand. If I stand for more then 15 minutes it feels like my spine has disappeared and the muscles in my torso are straining to hold me up. Thankfully, I see the Nurse Practitioner who handles pain management and palliative care in our clinic tomorrow. I’m hopeful we can come up with a pain management plan that will work. I know I’m also going to have to get better at taking pain meds and being honest about how much pain I am in. We have such a problem with opioids and addiction right now in our society. I think that once again, we keep trying to treat it one way or the other when there are lots of gray issues in between. There’s a whole other blog post on the number of times I’ve almost been denied pain meds. It makes me laugh a little because part of my problem is I try so hard to not take too many. I’ve also been trying CBD in different forms. I’m hoping to find a way to have that be helpful also.

I had scans the end of November which showed innumerable mets in my spine, pelvis and hip area. The cancer has grown quite a bit more from my scans just a month before.

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A little Er visit this month

I did see the High Wizard and he consulted with my Wizard. They both reviewed the results of my Foundtion One testing. I don’t have any mutations that are unusual. The course of treatments we’ve been doing have been the best treatments to use with my cancer. It’s a little disappointing to not have found a magic bullet to use, but I didn’t expect to find one either. We decided to circle back and try the CDK4/6 drugs again. CDK 4 and 6 are proteins which help to control how fast cells grow and divide. They work for both healthy cells and cancer cells. In metastatic breast cancer they aren’t working right which is what is causing the cancer cells to grow, divide and spread. CDK4/6 drugs inhibit the growth of these proteins and try to slow down the spread of the cancer cells. I’ve been on this type of drug twice before (Ibrance). You see many commercials about these drugs on TV. The women are always smiling and going about living with mbc like it’s no big deal. I really hate these commercials. They are so misleading.

This time instead of Ibrance I’m trying Verzenio. It’s a cdk4/6 inhibitor, just made by a different drug manufacturer from Ibrance. The High Wizard has had some success with people reacting favorably with one of these drugs when another one didn’t work. I’m also getting the aromatase inhibitor shots again, or Faslodex. You’ll remember the big, honking needles. So fun. Interesting fact, Verzenio is a mere $11,372.00 a month. Combine that with the shots which are about $4500 a pop and I’m an expensive cancer patient. Don’t get me started on insurance. I believe it is a basic human right. I know women who have to choose every month to keep a roof over their head for their children or take their meds.

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These babies hurt

Last month my tumor markers had increased to an all time high. If the med switch doesn’t work we will probably swing back to adriamycin. My heart has recovered from the damage that occurred previously while on it and my cardiologist feels very comfortable with me taking more then the recommended life time amounts. Once again we’ll be balancing heart damage with beating back crazy, fast growing cancer cells.

On the good news side of things, whatever spot was in my liver before doesn’t appear to be actively growing right now. It’s just the cancer in my bones which seems to be growing crazy fast.

I’m due to get tumor markers tomorrow to see if this course of treatment has helped at all. I don’t want to be discouraging, but based on my pain levels I’m going to guess it’s not working. I’ll let you know.

It’s been a discouragingly hard and wonderful last few weeks. Hard because the side effects and pain haven’t been fun. I’m throwing up more then I ever have since having cancer. The most common side effect with Verzenio is diarrhea. Yep, they don’t show Alice smiling through that one in the commercials. Couple that with constipation from increasing pain med dosages and my poor colon is wishing for a break. Also, at times the pain has been almost unbearable and I’ve had to fight back the fear that I won’t be able to do this. I’ll get help with that tomorrow. I have faith in my med team and know that they’ll do whatever they can to help manage my pain. I just have’t had a chance to get in there and talk through a plan yet.

I wasn’t able to cook any of our holiday meals. But it was absolutely wonderful to have my families help in doing it all. They did a great job of suffering through me barking commands and they did ALL of the dishes! I did still manage to “flame the sauce” for our Christmas Beef Wellington. It made me happy to know it all was fantastic and they did a great job. It means traditions can carry on without me.

 

I’m not able to drive anymore. I’m on way too many pain meds, and I’m in so much pain that it’s pretty difficult. Once in awhile I’ll hold off on pain meds to drive one mile up to the corner, but I can’t and don’t do that very often. It’s really difficult to loose that freedom.

It was heartwarming to have all of the kids and other family home for Christmas. But, it also was heartbreaking knowing how much heartache I was causing the people who love me when they saw how much pain I was in and how difficult it’s getting for me to move. I wish I could hide that one better and protect them more.

I say the last weeks have been wonderful, because once again I’m overwhelmed with gratitude at the amazing and loving friends and family I have in my life. People have been driving me to PT appointments, they take me to run errands, they’ve been bringing us meals and put up Christmas decorations for me. They take me to the doctor and lab appointments. It’s been wonderful. But it’s hard too. I just keep reminding myself that I would be doing the same for them if things were reversed. Being able to accept help is a lesson all of us need to learn. It makes us vulnerable, but also teaches us to trust the people who care about us. It teaches us humility and gratitude. Both qualities that I’ve found are important.

This is going to be a challenging year. It may well be my last. In fact I’ll be totally surprised if it isn’t. We don’t talk about death enough. It’s funny how afraid we can be of something that is going to happen to every single one of us. I’m going to talk about it. I’ve already started talking about it with the people who love me. I don’t want to be unprepared and I don’t want the people I care about to have to be worrying about what I want or don’t want because I didn’t talk to them about it. Just because I’m going to talk about dying doesn’t mean that I’m not going to do everything I can to not die. I want to find that balance. The realistic optimist in me needs to plan and acknowledge whats likely to happen. But, the optimist in me will keep hoping that the treatments will work and I’ll have some more time to spend with those I love.

Do me a favor this week and go move your body and enjoy being able to to it. Take a long walk and be proud of your body for moving and getting you around every day. Relish the fact that you can get out of bed pretty easily and make it to the bathroom when you need too. Enjoy a glass of wine for me and a night out with people you love. (I’m so sad that wine is just not tasting good.) Have a donut in moderation and then eat healthy too. Be happy this week and be kind. Buy someone’s coffee in line behind you or help a stranger. Give something useful to a homeless person. Grab some socks at the dollar store or some good protein bars and keep them in your car to hand out. If you feel like donating then donate to a cause that means something to you. Make a positive difference in the world this week!

 

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.

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.