Chemo Side Effects: Being Really Thankful Even When You're Bald and Sometimes Cranky

If you're just catching up with me you'll want to start here to learn about my discovery of lumpiness behaving badly which is also known as breast cancer to the every day person, as well as why I am writing about my journey of breast cancer and for the time being a breast cancer blog.

My prior post is here.  My next post is here.

One of my chemo side effects is gratitude which shows up in a variety of ways. 

I've noticed that I really want to reach out and connect with friends, and then there is the physical reality that some times kicks in.  The physical reality that I'm tired and even feeling cranky but not totally emotionally fulfilled for the day.  My introvert side loves being able to have some Michele time, and my bigger extrovert side enjoys and demands deep and meaningful connection with the outside world.

So, how does one balance wanting to reach out when your physical cancer journey has created some limitations?  Limitations of both physical and emotional energy. Limitations of time because you spend a significant portion of time going and coming from a variety of doctor visits.  Meanwhile you still have your life that includes a husband, a child, family, friends and meaningful work. 

Before cancer this "life" seemed to take 24/7, now it is shared with your cancer journey and isn't necessarily wanting to take the back seat.

What I'm learning is less really is more even when your monkey mind is beating you up to do more.  And most importantly to notice the love / gratitude in your life.  For many that same love was probably already in your life but not given a lot of focus aka it was unconscious and is now a conscious thing.  Now love and gratitude seem to be oozing from every where.

Signs of love and gratitude for myself and others are showing up all over the place. 

Sign #1:

A few weeks ago I had a conversation with Dr David Zucker of the Cancer Active Program at Swedish.  He shared the importance of exercise especially when you don't feel like it or your energy is low because it will shift your energy. 

He also said that I'm not the average kind of breast cancer patient in that I'm generally very active and fit.  I had complained that it was hard to get out (excuse) with a four year old.  He told me to count walking at the zoo for two plus hours and carrying Eli on my shoulders for about 30 minutes as exercise - that just because I wasn't in my "gym" clothes and focused on exercise didn't mean I wasn't exercising.  He said the same for yard and garden work - so yep I got to count edging the lawn by hand for 1.5 hours and 2 hours of digging dandelions and weeds. 

I noticed that other than one week of slacking right before chemo number three, I've been really good during chemo to get out and do some fast walking up and down a hilly route as well as continuing yoga, but I noticed that the week I did nada resulted in feeling exhausted, cranky and a bit bitchy (yep). 

I saw my notes from Dr Zucker during this cranky time and I have walked three days, done yoga twice, bought a kite and went kite flying with Eli and his friend Henry, have got out into my yard and done yard work twice (I'd like to report there are no more dandelions or weeds), took time to stretch and and do weights for my arm three times.

I feel significantly better - although I still have the "can I take a nap" feeling, but I'm not as cranky feeling.  For me the chemo tired feeling feels like when I used to travel between time zones - I'd get spacey, feel a bit out of it and want to sleep.  I often have this feeling every day.  It takes sheer will and determination to get out of bed which I do most mornings by 7 am, write my list of what is most important (3 items each for work and personal), participate fully in the day, be kind to myself, be a loving mom, and be a loving partner.  I am grateful to be (mostly as I'm not perfect) consciously choosing how I live and not reacting to every thing that shows up.

I am thankful for Dr. Zucker's kind words, amazing compassion, and passion for his work and patients.

Sign #2: 

I connected with a dear long time friend from Boston now in North Carolina.  I kept using the time zone thing (which can create a connection problem as my dinner and Eli time is their evening time - and an easy excuse) and not wanting to go into the whole breast cancer saga as the entry when we hadn't spoken for a while.  As soon as I heard her voice I knew it was perfect and it felt like we hadn't missed a beat. 

I told her I have often thought of her especially when I was out walking and going up  and down the never ending Seattle hills  saying the mantra "my legs are like pistons" with each breath.  We used to do a lot of biking around the Boston Hills and each time we hit a steep one I'd yell out with a big smile - "Susan just say, my legs are like pistons and you can do it."   Susan, well she'd often give me a dirty look or yell an explicative of course framed with her southern "girlfriend, #(*%*(# with your pistons."  I think just because of her drawl it which sounded wonderful I never took it personal or maybe it was the friendship with the glass or two of Chardonnay I knew we would often share later in the evening with our dinner was more important.  Now it is simply remembering to take my old advice.

I am grateful for friendship that has no boundaries and limits.  I am even more grateful for the number of friends that have stood up and offered kind words, help, and love with no boundaries or seeming limits.

At a kid's party a few weeks ago I ran into Skye who also has cancer, his is in remission.  We got into a conversation about asking for and receiving help.  How hard it feels to ask, yet how much harder it feels (before you begin to just allow it) allow it in with out judgment or thinking you owe some thing back.  (When I find the link to his blog I'll put it here.)

He told me that one of things he heard again and again is the number of people in his circle that said the best part of his cancer journey was being able to help - that it filled them with deep honor and gratitude.  Yes, I completely can understand. 

Sign #3:

I went to a small liberal arts college in upstate New York, called Hartwick. Today their quarterly magazine, The Wick came out.  Two people that I knew had long cancer stories.  One was about death and one was about survival. 

I checked out the website from George P Kansas, a class of Hartwick 1986 peer) who has written a few books.  One called, Jumper Cables for Your Healing Soul and a small book of meditations called Jumper Cables for Your Soul.  I bought the medications book online and love it. 

Here are some of his daily 8 word meditations:

I breathe.  My body and soul are renewed.

The Universe puts me where it needs me.

I am what I do something about every day.

I breathe in gratitude and I exhale forgiveness.

When a past frustration arises, I say "NEXT!"

Timing is every thing.  I fully believe, all that we want is already there - it's simply about being open and allowing - then we can see it and have it. 

George has turned his cancer journey into an amazing resource for others.  After doing a Google search on George (hope you don't mind George) I learned that we are on very similar journeys with our work - both of us use coaching and consulting as the modality and our work is supported by connection to values and a bigger world picture of:  what you think you say, what you say you do and what you do you become - and knowing that each of us has the choice to choose how we think.

I'm grateful for both the inspiration of his work as well as the inspiration that comes from connecting to a kindred spirit and soul.

Sign #4:

One of the bigger questions I've had for myself is....how "sick" do I really need to be before I ask for help? 

Truth be told I am so blessed and grateful for the ease that continues to show up on my cancer journey especially during chemo where I've really had few side effects.  Well, OK, I've had a bunch of side effects but I choose to look at them as more of an inconvenience then a set back.  Maybe that is what  my blessing is about, choosing how chemo side effects will affect me.

Back to how sick do I need to be to ask for help.  I can break my breast cancer journey into a few different stages so far:

Stage 1:  Oh My God and Oh Shit I've been diagnosed with cancer!

This stage is the most emotional...let's say on a scale of 1 to 10 it was a 12.  This is what has also made this the most difficult stage.  You need a lot of help and are simply trying to get your head above water.  People are so amazing and want to help and share stories.  Life is a bit of a blur.

Stage 2:  Surgery and initial recovery.

Yep, definitely need help with this one.  Physically you are not able to do it all, so you really do want to get out of your own way and allow help in. 

I was so appreciative of help.  I had asked for meals for the three days after surgery.  What was amazing was that food kept appearing at our door for over a week.  I was thankful that people ignored my initial request and did what they wanted to do.

I also asked for some help with Eli and driving.  Perfect.

Stage 3:  Chemo - You don't know what you don't know - anxiety raises is stinking head again

How does one get ready for chemo?  What do you ask for?  I wrote about all of the possible chemo effects and ended up having comments to my blog and my phone ringing with words of support.  I really think chemo anxiety is simply part of the journey.

Cancer and chemo are interesting is that so many people are diagnosed with it, but each of their journeys are unique.  Out of this bizarre partnering - many cases of breast cancer but wanting to approach each patient with their own plan - comes anxiety for the patient because you don't have any set rules or lists to count on.  As a gal that likes to know information, so I can make a decision (which is both data based and intuitive based) I found this very difficult.

When you look at worse case chemo scenario you will want a lot of help - because basically you're going to feel like shit, puke, and want to be horizontal for numerous days each round.  I have to say I think I got best case scenario - I'm vertical and haven't gotten sick once although I often feel like I have jet lag.

After experiencing my first 5 hour chemo day visit which includes blood draw, waiting to see your oncologist, an ocology appointment, then more waiting as they slowly send your chart downstairs which only took me three minutes to get down and them 45 minutes, I got over the anxiety and realized that chemo days could be a good thing. 

Imagine three hours of solitude - set up exactly how you want it.  Sure you have an IV hooked up, but really it's not that big of a deal once you've done it once.  You've just got to learn the IV shuffle when you go to the bathroom and how to transport the whole machine down the hallway without wrapping the cords all over the place.  Adorable Brian, the Thursday afternoon volunteer, that has been there each time stops by to bring snacks and light conversation.  The nurses are amazing women and very willing to be engaged if you want.  A good friend by your side (do bring one).  Lunch.  Magazines. Conversation. Hanging out.  I actually look forward to my chemo days because they are slow and enjoyable.  Kathy laughed and said, maybe that was the trick to no side effects - thinking it is enjoyable.

So what kind of help do you really need?

Think of some of the chemo side effects. 

Baldness. 

What kind of help do I need?  OK, emotional, and physical to help me shave and transition from falling out stringy hair to nubs.  Do I need dinner brought to me?  Do I need Eli picked up?  No, but the beautiful scarf that I made a turban from amazing.

Although my hair had stopped falling out, I'm noticing after this last round more nubs are coming out and I probably have 10% left.

Horrible constipation. 

What kind of help?  Well two girlfriends did bring me both stool softener and Miralax to increase bowel frequency.   The first round I religiously used the stool softener and after four days thought I would explode but couldn't.  The only explosion was the toxic explosion in the bathroom and it took a plunger and industrial use of the fan to clear it (yes a total over share), but for anyone that goes through chemo stool soften is not the trick for chemo...be sure to get some thing like miralax that tricks your bowels into taking a big dump each day for 3 to 4 days.

Metal Mouth and Burnt Tongue.

I've noticed some metal taste in my mouth, but what I've noticed more is the burnt feeling on my tongue.  Think about drinking coffee that is too hot, burning your tongue and then multiplying that throughout your mouth for weeks. That transforms my favorite dishes into bland nothingness or a dish that I don't really care to eat.  Most importantly wine doesn't taste good for a week or so at a time.

The first round of chemo was the worst.  My tongue was huge, cracked, and felt horrible (maybe because I couldn't have that daily BM).  Any thing green tasted like rotten compost.  On top of that the steroids made we want to eat.  All day I would sample a variety of things but not be able to find any thing really satisfying that comes from my normal menu.

I noticed that my mouth has wanted bland and sweet but I really don't taste much of any thing.  At one point I finished Eli's ice cream and I tasted nothing, I could just feel it's consistency in my mouth.  Imagine eating a turkey sandwich and all you can really do is feel it - truthfully it doesn't compel you to want more but due to the steroids you eat it and want more and can't tell when you are full. I noticed this after week two and have been very conscious about how I eat. 

I'm fit and want to keep it that way.  One of the side effects of chemo for breast cancer is weight gain.  I imagine it's due to some of what I've written.

Again, back to the question, how much help do you really need?

There is no answer to all of these side effects and necessary except for the one you create.

I realize that my Goggled Boob and Project Boob Management Sites have been quiet - because I've been quietly living and moving forward.  Other than my sister Corinne taking Eli two of my chemo weekends, which was a huge help, life has been relatively easy with the rhythm of school, daycare until 4 pm, work, dinner, etc.

Things I am grateful for in my "not thinking I need help" but "am open to what shows up."  In the past two weeks this is what has simply shown up. 

• a couple of dinner casseroles this past week from a girlfriend that doesn't even like to cook- it felt great not to cook, and I realized that it did help not to extend my energy here so I had more time for Eli and myself.
• recent cards and messages letting me know I'm being thought of
• a special potion of oil for my bald head - yes I rub it like a genie and make 3 wishes each time
• a check to put towards medical expenses
• wonderful smelling lotion
• a haiku at my doorstep
• dinner in a bucket (a full ready to cook dinner) Tim thinks the bucket is for my bedside
• a surprise gift for a massage from Alis Brown LMP, an amazing woman with a story, and one time use of her health club that has a wonderful steam room and to top it off babysitting Eli so it can happen without me needing to think about how to make it happen
• foot reflexology to keep my body flowing from a client that owns Return to Radiance
• dinner at my neighbors
• instead of going alone, a date with a girlfriend to the Dalai Lama in Seattle
• girlfriends at chemo
• stool softener
• Eli's overnight at my sisters after chemo
• an opportunity for me to make dinner for neighbors without a kitchen
• the opportunity for me to reach out and connect in thanks!

As I wrote this list I get that it is both asking for what I want, and simply allowing the space for love and gratitude to flow in and out.

Life is blessed!

Regards, Michele Corey, writing for Knee Deep Blog A dose on insight and a little crap from your not always average home based business and Internet mom and Money Wise Women: A Blog for Women that are ready to get their financial house in order

And of course I can't leave out the business:  Advanced Approach

PS. Now you can find me simply by typing in http://www.kneedeepblog.com

Financially

If you want to financially help us with out of pocket medical - I say thank you in advance because due to some other circumstances during the past year and a half this wasn't some thing we financially ready for and are open to help whether it be $10 or $100 which we say thank you or let me totally get out of my comfort zone $100+. (And believe me that it took a lot of courage on my side to drop my fears and ego and ask). 

Money (cash or visa) can be sent through a secure system - PalPay.   You can contribute either anonymously or not.  Offerings may be sent to michelec (at) unleashthemagic.com - obviously write it like an email address or by clicking on the Donate button below.

I am also committed to either - taking this off once we know we are covered and / or leaving it up and contributing to others that have cancer and need help - once we get there I will ask you.