Tag Archives: grief

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.”

108 Every Day

Yesterday I celebrated my 53rd birthday, my fourth birthday since being diagnosed with metastatic breast cancer (mbc). While I was able to celebrate another year of life, 108 others with mbc in the United States died. Today, another 108 people will be robbed of their next birthday and tomorrow 108 more.  Each and every day 108 mothers, sisters, friends, cousins, husbands, brothers and sons with metastatic breast cancer die. It has to stop.

This past weekend I attended the Living Beyond Breast Cancer conference in Philadelphia with over 300 others with mbc. The conference began by asking those in attendance to stand up according to the number of years they have been living with mbc.  First, those diagnosed 2 years and less stand, then those diagnosed 2-5 years ago and then 10 years or more.  The largest number stand for 2 years or less.  By the time we get to 10 or more years there are only a handful standing.  We clap and applaud these exceptional outliers, each of us secretly hoping that will be us some day, but knowing the reality is unlikely. From 2000-2013, 15 billion dollars was raised for breast cancer research,  but of that 15 billion less than 7% was spent on research for metastatic breast cancer.  You can read the study in its entirety on the MBC Alliance website. This year the LBBC conference trained its first group of Hear My Voice advocates, but advocacy takes time and time is one thing people with mbc don’t have, so out of frustration a die-in was organized, Why I Organized a Die-In, and Philadelphia Story.  108 of us gathered together and got down on the floor. We closed our eyes; some of us holding hands, and recognized our greatest fear. It was hard, really hard, lying there and knowing that one day I would most likely be one of the 108.  I lay there thinking about all of the things I was probably going to miss, my son’s graduation from med school, grandchildren, vacations, all of the milestones and memories that make life so precious. I thought of the increasing number of young women being diagnosed with mbc and what was going to be taken from them. The picture of us is dramatic, uncomfortable, but mbc is not pretty. It’s hard to visualize the reality of living and dying with mbc when others look at me. I don’t look sick.  There is a lack of congruence when you see me and think of the 108 who die each day.  But when I was on the floor with those other 107 the reality became evident.  My hope is that someday mbc will become a chronic illness, similar to what we’ve been able to do for AIDs.  People with mbc are starting to develop their voice, I hope the world starts listening.

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