Tag Archives: support

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!

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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!