Tag Archives: treatment

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.

Moving On

 

The last 5 months I’ve been busy enjoying a break in harsher treatments.  I didn’t say I wasn’t treating, just doing a course of treatment that for my body, is fairly easy.  I went back on Ibrance, along with a side of my favorite buttocks enhancer, Faslodex.  I’m also still on Letrozole, which is an aromatase inhibitor.

My tumor markers have been slowly climbing since last September. Scans last November also showed mild progression in my bone mets. Since I wasn’t having more pain and still felt pretty good, I decided to keep going with the current meds.

April’s scan told a different story. A fair number of my bone mets had almost doubled in metabolic activity since November.  Time for a change in treatment.

Two weeks ago I started my new treatment protocol.  I’m taking 3 different drugs. CMF for short, or to be technical, cytoxan, methotrexate and 5 FU. ( I truly do love that FU.) It’s an “oldie but goody” treatment protocol.   One of the meds is an oral chemo.  I take 7 pills once a day for 14 days.  On day 1 and day 8 of my treatment cycle I go into the clinic for two chemo “pushes”.  It’s not really an IV.  Just a syringe of the meds that are pushed into my veins through my port.  I receive a nice dose of steroids and anti-nausea meds to counter side effects.   Day 15 thru 28 I have off and then it all starts again.

I was hoping side effects would be minimal.  It is daunting however, when the handout of possible side effects  is 4 plus pages.  Really.  Turns out nausea is the number one side effect for me right now despite all of the additional meds they give me to try and counteract it.  I’ve been having the dry heaves once or twice a day.  Not fun. I have anti-nausea meds I can take, but they make me sleepy and prevent me from driving and trying to get a few things done.  So, I’ve been making it work until later in the day when take them.

The last week or so before changing treatments was tough.  I’ve know for a month or more that I’d need to change treatments. The closer it got to May 1,  the harder it was.  I hate not knowing how I’m going to feel or react to a new treatment.  It messes with my business of living in a big way.   Anxiety and fear ran the show the week before my appointment date though I tried to reign it all in and stay focused in the present. I searched hard and kept missing the balance point of peace known as Now.  I fell on my face often, with some face plants lasting longer than others.  Anyway, I’ve started now and am figuring out how to live with this new one.  Because treatment is forever.

I’m still amazed and frustrated with how many people there are who don’t understand that I will continually be in treatment for my terminal illness until I die.   Yes, I look pretty good ~ usually. I’m still going to the gym twice a week and still trying to walk and get out and about. But that’s just what I let you see. You don’t see the diarrhea, the constipation, the mouth sores, the hair thinning, the low blood counts and weakened immune system. The dry heaves in the bathroom, the bruises from low platelets and the never ending fatigue.  Honestly, the fatigue.  This past “easy” stretch of treatment enabled me to run maybe three errands at once. (Yea me!!)  What you wouldn’t  hear or see while I’m out is my mental dialogue  “Ok, you can do it. Don’t fall over, just 10 more minutes and you’ll make it home.”  4 pm has become the new pajama time.  Every time I do something out at night I regret it.  Why, why, why did I say yes?  Oh yea, because I do love you all and cherish you and want to be nocturnal, but dang, I’m a wuss.  On the other hand, THANK YOU for still asking me!  For not forgetting me, for after 6 years of this crap, still asking me what you can do to help.  I am so fortunate to have the people I have in my life.  I appreciate you!

IMG_0672