Tag Archives: hospice

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.