As is the normal after an infusion, there is no normal.
There is a bit of a routine... wake up, get ready, Starbucks, Blood Work, Doctor Appointment, Infusion, Home and then rest but a lot can happen in the in-betweens.
Not only am I physically weary but an emotional weariness has settled in.
Half way has been a greater emotional struggle then I was prepared for and knowing that although I am half done there is also still half way to go.
There is also a heightened level of anticipation as the treatment cycle nears its end (12 infusions) and I prepare for the results and next steps of this journey.
I am neither hopeful nor hopeless
And I am finding comfort and joy wherever I can
like enjoying some post infusion snuggles with my Cooper.
a new hat
a cup of warm tea
and surrounding myself with reminders of joy and the circle that is holding me up.
I am blessed to by all of you, who share this journey, who say "we've got you" when I need to hear it most.
Thank you
Friday, March 31, 2017
Sunday, March 26, 2017
Twas the night before chemo
and all through the house, not a Sparkle was stirring not even an ounce
Good night my dear friends
May you dreams be Joy filled and your days be blessed
Good night my dear friends
May you dreams be Joy filled and your days be blessed
Saturday, March 25, 2017
Living in a Haze
Until the chemo fog lifts is challenging.
I have realized this go around the new "norms"of my journey and have been faced with the challenge of half way done and half way to go.
To borrow the words from my Dad, the following pretty much sums up a typical day on this road to healing.
The familiar characters (nausea, fogginess, loss of appetite, exhaustion, mouth sores, anxiousness, tears, frustration, good intentions gone awry, etc.) continue to insist on taking their turns playing their roles.
Thankfully, there aren't too many crowd scenes and none has become the star of this show. And still, joy finds a way to make an appearance and gracefully moves to center stage.
Yup- that pretty much says it all. And its hard. Yet when I get quiet and it would be easy to think of what is "lost" or on hold its your tangible expressions of love and support that overwhelm my thoughts and
Your whispered prayers that blessing me with Joy and the motivation to take the next right step.
As I head into the weekend before infusion #7 the anxiety is high (as I am learning to expect and accept) and I am faced with the a choice of how to spend my time, my energy and where to direct my thoughts.
And this is what I choose...
An accessory of beauty, liquid joy in a cup, hanging on and holding tight, embracing my new Sloth like movements, Choosing Joy and remembering the ninja fighting skills just with in reach.
Monday is coming but its not here yet!
Friday, March 24, 2017
Spring Break Shenanigans
Not our normal sunshine southern adventures but just as much joy.
Trips to Target
the discovery of Llama heads for decor (much more joyful then a Lamp :)
Gourmet peanut butter and jelly sandwiches
And opening the pool (the earliest we have ever done it)
Still a few weeks from swimming but the promise of joy just around the corner and the blessing of "blue" out my kitchen window.
I am sure the neighbors appreciate the annual appearance our winter pool cover in our front yard :)
(good thing I have an "in" with the Mayor)
But this Momma is happy to have a room with view-- the promise of the summer and my four favorite people.
Trips to Target
the discovery of Llama heads for decor (much more joyful then a Lamp :)
Gourmet peanut butter and jelly sandwiches
And opening the pool (the earliest we have ever done it)
Still a few weeks from swimming but the promise of joy just around the corner and the blessing of "blue" out my kitchen window.
I am sure the neighbors appreciate the annual appearance our winter pool cover in our front yard :)
(good thing I have an "in" with the Mayor)
But this Momma is happy to have a room with view-- the promise of the summer and my four favorite people.
Wednesday, March 22, 2017
Hump Day
Dark is Dark
Suck Sucks
and having Cancer is Hard
Each day I am faced with new obstacles sometimes new symptoms and always new realities.
What I can eat today, I may or may not be able to eat tomorrow
Activities that were once easy now pose new challenges
and I am reminded often of my journey and this season of my life
It is easy to sink into the Dark, to feel the weight of my diagnosis.
It is easy to feel discouraged and burdened
and too often it feels like that its only hard days and can'ts
Unintentionally (or sub consciously) as the anxiety has increased, as the journey has progressed, and as time passes I have started bracing myself for what was coming next, tensing at the anticipated and slowly sinking into my present reality.
I have come to expect (though am never prepared) an increase in these thoughts and feelings as I draw closer to the next infusion. Each round a little sooner and a lot stronger.
Last weekend was no different, just days before my 6th infusion
My anxiety was high, my body was weary and I was feeling my reality deeply when a dear friend blessed me with her culinary skills and creativity.
This is what she made...
Camel Cookies
To celebrate Half Way (Hump Day) of my Infusions
It was just the bit of encouragement (or bribing) that I needed
These silly little cookies were just the reminder I needed
They reminded me that there is
always something to celebrate
sweet moments can be found in the midst of every day
Joy comes in all shapes and sizes
and blessings await
Dark will still be Dark
Suck will still suck
Cancer is still hard but I am half way,
Tuesday, March 21, 2017
Sunday, March 19, 2017
Chemo #6
To quote my better half...
"its really annoying to have to say that my bi-weekly chemo infusions have become "normal"
But... well it has"
So have the bi-weekly Starbucks :)
before we head to the hospital for my infusion
Another annoying "normal" is the fact that no two infusions are alike.
Infusion #6 was chemo only (no doctor appointment) and from the start it was clear this one would follow the "normal" pattern.
My port was being less then cooperative (though still a blessing) and the normal routine blood draw took 3x times as long.
Nearly an hour after arriving, I was settled into "my room" for treatment
The "normals" continued with:
Chewing Ice for an hour
(we tried a substitution of frozen fruit instead of ice chips which proved to be a bit more cumbersome then anticipated and changes for next time were quickly noted.)
HGTV
(Love it or List is not as distracting or appealing as Fixer Upper)
And the constant commotion of nurses and med techs making it difficult to focus on anything for longer then a moment
But this is the normal of our now and I find comfort in the familiarness of it
One more done, 6 more to go
"its really annoying to have to say that my bi-weekly chemo infusions have become "normal"
But... well it has"
So have the bi-weekly Starbucks :)
before we head to the hospital for my infusion
Another annoying "normal" is the fact that no two infusions are alike.
Infusion #6 was chemo only (no doctor appointment) and from the start it was clear this one would follow the "normal" pattern.
My port was being less then cooperative (though still a blessing) and the normal routine blood draw took 3x times as long.
Nearly an hour after arriving, I was settled into "my room" for treatment
The "normals" continued with:
Chewing Ice for an hour
(we tried a substitution of frozen fruit instead of ice chips which proved to be a bit more cumbersome then anticipated and changes for next time were quickly noted.)
HGTV
(Love it or List is not as distracting or appealing as Fixer Upper)
And the constant commotion of nurses and med techs making it difficult to focus on anything for longer then a moment
But this is the normal of our now and I find comfort in the familiarness of it
One more done, 6 more to go
Saturday, March 11, 2017
Llama Lamps and Lattes
Joy comes in all different ways and while I might regret this post later I wanted to share an on going joy of my life.
As previously posted, excursions to Target are a wonderful distraction and often a highlight of my non-chemo weeks. If that same trip includes a Starbucks my joy tank is nearly full. And if I see the Llama Lamp (which I so dearly love) my Joy tank overflows.
I have no idea why I am attached to this silly little lamp (zoom in closer to see the Llama head stand and pom pom dazzled shade) or why just seeing it makes me smile but it does. And the one trip that it was not there (snatched up by another Llama lover I'm sure) I was nearly in tears.
But if I had to guess, I think it brings me joy because its unexpected and a bit of silliness mixed in with the normals of every day (pillows and sheets).
Don't we all need moments like that? Daily reminders amidst the ordinary things.
And just for clarification to my initial statement.... I do NOT want to owe a Llama lamp :)
I prefer it to stay where its joy can bless others.
May you too find hidden Joy filled moments in the ordinary parts of your days.
As previously posted, excursions to Target are a wonderful distraction and often a highlight of my non-chemo weeks. If that same trip includes a Starbucks my joy tank is nearly full. And if I see the Llama Lamp (which I so dearly love) my Joy tank overflows.
I have no idea why I am attached to this silly little lamp (zoom in closer to see the Llama head stand and pom pom dazzled shade) or why just seeing it makes me smile but it does. And the one trip that it was not there (snatched up by another Llama lover I'm sure) I was nearly in tears.
But if I had to guess, I think it brings me joy because its unexpected and a bit of silliness mixed in with the normals of every day (pillows and sheets).
Don't we all need moments like that? Daily reminders amidst the ordinary things.
And just for clarification to my initial statement.... I do NOT want to owe a Llama lamp :)
I prefer it to stay where its joy can bless others.
May you too find hidden Joy filled moments in the ordinary parts of your days.
Thursday, March 9, 2017
The Fog has Lifted
The symptoms of Chemo #5 are slowing receding and the good moments are starting to dominate my days. I am thankful for the blessing of sunshine (a natural joy booster) and moments that make me smile.
This infusion has been a bit more of a roller coaster of a recovery (ups and downs and everything in between and no predictability) and another reminder of the lesson to Hold On.
I appreciate all that I am learning during this journey and am particularly thankful for the gift of Time.
Time to rest, pray, and most importantly focus. My life at the moment requires a tremendous amount of intentionality and all tasks require more focus then in the past.
The gift of Time is a hidden blessing amidst this storm.
May you also be blessed with hidden blessings and Joy filled moments
Monday, March 6, 2017
Leaving Wet
The most difficult part of receiving my diagnosis was telling people of my journey ahead. In one particular conversation with our campus pastor Matt I realized my greatest fear of this journey.
It wasn't hair loss, or throwing up
It wasn't even about dying.
My greatest fear was that my Sparkles would blame God for my illness. That they would be angry at Him for making Momma sick or not healing me when they asked. I was reminded again that I cannot save my children, I cannot choose for them and I can't make them believe.
All I can do is to take the next right step myself.
I began praying that day that the Sparkles would experience God and his Goodness in the midst of this trial. That they would see something greater then the present situation. I prayed that they would be filled with joy- seeking it in the toughest situations.
And last weekend, God answered my prayer and Madison went All In For Jesus.
My heart was overflowing with joy as I watched her take the plunge.
It was exactly as I would expect it to be for Madison- responding to a nudge, taking her Dad with her and having no previous plan or schedule. I knew she was on the cusp of her decision and the greatest gift I could give her was to be praying for her and to celebrate with her when she was ready...
I am so proud of Madison and for her decision. I am thankful that her Dad could share this special moment with her and that I was there surrounded by our friends in celebration of an answer to prayer.
God is good!
Saturday, March 4, 2017
Chemo #5- Unfiltered
Having Cancer is hard...
Then, I get hooked up... First is a saline drip that everything mixes with. Then, the nurse starts me on a cocktail of nausea medication. For this trip, we were brought some food for lunch as we have found that receiving chemo on an empty belly causes me to feel really sick by the end of the treatment. This is actually a challenging process as the food has to be timed just right because Rob makes me start chewing ice 10 minutes before the first chemo medication... and he makes me keep chewing the ice the during the course of the first medication (the red devil) and the second medication and then for as long as I can stand afterward, which is about another 5 minutes. In total, I'm chewing ice for 40 - 50 minutes. The chemo causes this nasty copper penny metal taste in my mouth and the cold ice makes this worse... and it makes me become really cold and uncomfortable. I hate this part because I get cold and fight to not shiver the whole time. I can't get warm again and can't get rid of the nasty taste. I'll often fight Rob during this time, even though I know it's for the best. If I don't keep my mouth cold, these first two chemos will cause my mouth to break out in ulcers that line either side of my tongue and my cheeks. the final two chemo drugs pass without much issue
6 hours after arriving at the hospital, it is time to leave. As I shuffle along and try to catch my breath, we stop in at the cancer gift shop and look at scarves or hats that I can use to cover my head... unfortunately, even the cute hats hurt too much to wear... eventually, discussion turns to what treat I would like for finishing this treatment (and being 42% finished). The last two infusions I have asked for ice cream (last time, I fell asleep before we could stop!) but this time all I could think about was a certain cupcake from a specific bakery- only a slight detour on our way home.
I get home and get out of the hospital clothes to settle comfortably to rest and indulge in a sugar coma. The best part about this cup cake is that the taste stays in my mouth for a long time and I don't really taste the nasty penny for a brief while.
And as much as I try to to be authentic and real on this blog I have found that on the hard days I often do not write thus leaving out a whole section of the journey.
So this time, I am sharing the unfiltered chemo recap....
This is how the morning started- tears, many many tears.
Tears for the unfairness of this journey. Tears for feeling awful, Tears (and a bit of begging) to not go. Tears that its another step but not the end.
And just like a child, I can often be distracted (and bribed).
Starbucks has been a comfort and something that makes me smile - it gives my day something normal and gives me the extra courage to press on.
When I first check in at the hospital, a nurse takes me back to access my port. Even with pain killer over the port, it is still a sharp stabbing pain and a reminder of what the day holds. Today, I also had an appointment with my doctor and am taken to a waiting room where we... wait... and wait... This time, we spoke with an intern first before the doctor came in. We discuss the progress, talk about some of on going issues (random bruising on my skin that might not go away, pain in my hands and feet that isn't usually expected until cycle 4 or 5, if medication is helping with constipation, the horrible metallic taste in my mouth, appetite and nausea that just never seems to go away...) then he confirms that things are going to plan. We then asked about alternative medication for the nausea and he agreed to give me a prescription for this. Eventually, following the lengthy doctor appointment and blood work, we head over to the infusion area and get settled into a room (this is my 3rd treatment in this same room).
Having tried the recliner in the common area, a bed in a private room, and a recliner in a private room, the best combination is definitely the recliner in the room. I get tucked in with my warm blanket (I will end up with 4 by the end of my infusion) and of course my matching socks to my hoodie (Its the little things that keep the smile on my face :).
Then, I get hooked up... First is a saline drip that everything mixes with. Then, the nurse starts me on a cocktail of nausea medication. For this trip, we were brought some food for lunch as we have found that receiving chemo on an empty belly causes me to feel really sick by the end of the treatment. This is actually a challenging process as the food has to be timed just right because Rob makes me start chewing ice 10 minutes before the first chemo medication... and he makes me keep chewing the ice the during the course of the first medication (the red devil) and the second medication and then for as long as I can stand afterward, which is about another 5 minutes. In total, I'm chewing ice for 40 - 50 minutes. The chemo causes this nasty copper penny metal taste in my mouth and the cold ice makes this worse... and it makes me become really cold and uncomfortable. I hate this part because I get cold and fight to not shiver the whole time. I can't get warm again and can't get rid of the nasty taste. I'll often fight Rob during this time, even though I know it's for the best. If I don't keep my mouth cold, these first two chemos will cause my mouth to break out in ulcers that line either side of my tongue and my cheeks. the final two chemo drugs pass without much issue
6 hours after arriving at the hospital, it is time to leave. As I shuffle along and try to catch my breath, we stop in at the cancer gift shop and look at scarves or hats that I can use to cover my head... unfortunately, even the cute hats hurt too much to wear... eventually, discussion turns to what treat I would like for finishing this treatment (and being 42% finished). The last two infusions I have asked for ice cream (last time, I fell asleep before we could stop!) but this time all I could think about was a certain cupcake from a specific bakery- only a slight detour on our way home.
I get home and get out of the hospital clothes to settle comfortably to rest and indulge in a sugar coma. The best part about this cup cake is that the taste stays in my mouth for a long time and I don't really taste the nasty penny for a brief while.
The rest of the day and evening passes in a bit of a blur... Lots of napping... (in bed for a change, my recliner had broken and was flipped upside down while Rob fixed it)
Back in the recliner and watching game shows...
...lots of meds to try to stay on top of my pain and nausea... including trying the new one... tonight dinner surprisingly tasted good. We still don't know if this new medicine will work, but getting to eat a meal that doesn't taste like metal is a big deal.
Later that night, Rob came up and with a surprise for me... after a quick search for a comfortable place to sit and... I got to watch Fixer Upper before bed time.
While the day may have started with tears, it ended with some joy
- the kindness of a brother in law to be able to watch my favorite show
- having an appetite
- many seats and places to lay in comfort
- satisfaction that another infusion is done and the healing continues
Its not always easy, but I choose joy.
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