Tag Archives: friends

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.

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

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!