Time to Pause...

I noticed in the early days of my diagnosis that there was a common theme of cancer blogs trickling off mid treatment. I was quick to assume that when the going got tough often corresponded a drop in updates and posts. Mid treatment is when the pictures are less flattering, when the side effects are no longer easy to hide and the reality sets. I don't blame them for not wanting to sharing those parts yet I felt a stirring in my heart I committed in those moments to pray for those on this journey and that I would be press on- maintaining my promise to share the good, the bad and the ugly of this journey and write authentic posts even when it was hard.

But that was an easy promise to make in those early days and I was too naive to understand the Bigger picture or the other side of the coin.

In those early days I tired quickly but I also rallied
My mind was cloudy but there were clear days
I often laughed and sometimes cried
And it was easy to seek Joy when the moments got tough.

But the early days are gone, and half way is past, and as I crest toward 75% treatment completion I must admit that I am struggling.

I am still quick to tire but even slower to rally
My limitations are daily not weekly
My mind is perpetually cloudy
I cry more then I laugh
and Fear and Anxiety lurk just around every the corner

I am deeply entrenched in the "chemo trough" as my correspondent doctor from afar so eloquently phrased it. And in the darkness of the trough its easy to feel the I Can't and the No More. Its easy to feel the pressure to continue what I have or think I should be doing at this point. Its discouraging to admit that the closer to healing the more that is taken away. Even if for only a season, the season feels  long.

As I have battled the reality and the changes I need to make, I have cried over the loss of more and the loneliness of the journey and for a moment believe that no one could understand

But leave it to Hallmark and my ever growing and loving circle of support to know what I need to hear:



I have read these words over and over this week
I have prayed and cried and maybe even begged a little
and then I have rested... and accepted... and Leaned In to this next step.

And let me say, its really hard.
Its hard to let go of more.
Its hard to break habits (especially good ones).
Its hard to not do what I have always done
Its hard to not make lists or cross things off
Its hard to say No to good things
Its hard to choose and prioritize
Its hard to have limits
and its really hard to have cancer.

So my dear friends, please know that my silence does not mean I am not fighting or that bad news has come. My silence does not mean that I don't need you or that I don't read your messages, cards, emails and text.
My silence is only a reflection of my weariness and that all of my energy is being spent to heal and to love my husband and Sparkles.

Please keep praying, keep encouraging, keep holding me up.
Stand in the Gap for me in the moments that I can't stand for myself.

I love you all :)

Blog Updates

After several comments and a bit of constructive feedback I thought I should write a brief disclaimer regarding my blog updates.

As you may have noticed, there is often a lull between post (and yes I do go back and post date updates to correspond with when the event actually happened and not when I finally posted the pictures). This lull is due entirely to the effects of chemo and when the "haze" lifts.
It is very difficult to post with a foggy mind and while in the beginning the fog usually lifted around days 8-10 post infusion the residue of the haze is staying longer and longer.

 I refer to this new phase as Dory (hence my new amazing coffee mug). These Dory moments are a part of my daily life and become more frequent especially when I am tired,anxious, afraid, over stimulated, fearful, and before or after an infusion.

A blog post can take me anywhere from 1-3 hours to type and post. This is not me seeking perfection but is just me trying to find clarity in my thoughts and to correct my typos and auto corrections (some times quite exciting as I am not sure if the auto correct is an error or what I really meant).

Please know that I want to blog and I am open to sharing any and all of my journey.
Be patient and forgiving of my typos, sudden shifts in formatting, and my misuse of then and than (yup still can't always get that one right).

I am trying but its getting harder.

I so appreciate all of you for checking in and wanting to know how I am doing and where we are in the journey and please know that no news is good news and silence is always an opportunity for encouragement and prayer.

A loved ones view

It is easy to forget that I am not the only one weathering this storm. 

Here is a email update sent by a loved one to their circle of support. May it offer you more insight then I might or a different view of the road to healing. 

• Aliza had her 8th infusion on Monday, April 10th.  Her 9th is scheduled for this Monday, April 24th.
• This was a bit different for me as I was home and able to be closer to the action.  This is what I saw...
• Monday (infusion day)... everything goes as usual in terms of the drugs and the process... Aliza comes home exhausted and looking very pale.
• Tuesday... she is still very tired but unable to get much rest... her cheeks are flushed...
• Wednesday... Aliza sleeps most of the day on top of a good night's sleep.
• Thursday... Aliza forces herself to eat though the constipation gives her a rising sense of fullness... she waits for the mouth sores to erupt as they usually do at this point... 
• Friday... she discovers and reports to me that it is possible to be constipated and have diarrhea at the same time...
• (I'm out of town for Saturday and Sunday morning.)
• Sunday afternoon... we have a wonderful Easter / birthday lunch (we celebrated Jan's -  April 13th, Lillian's - April 18th, and my mom's - April 20th birthdays)... the mental fog has lifted somewhat but Aliza is easily overwhelmed if two people talk at the same time or change topics too rapidly.
• Monday and Tuesday... I am out of town once again.
• Wednesday... Aliza is very teary-eyed... she is sitting on the floor of her bedroom surrounded by paperwork and her laptop, crying... she is trying to finish a few work projects that would have been quite easy and routine before the chemotherapy... she is having trouble focusing and connecting her words to her actions... she is very discouraged and her anxiety / grief are palpable... being the trooper that she is, we chunk her focus down, she keeps plugging along, and with help from Rob, gets what needs to be done, done.
• Thursday was a better day... she went to Lillian's music program at school, had coffee with a neighbor, and went to lunch with Jan and my mom.
• Later that night... Aliza shared more of her internal struggle in an email... she wrote... "Monday is coming and I am trying to mark a few things off my list.... my head is a bit clearer tonight so I am attempting to answer a few messages though I recognize that this might be my last response for a season.  Its is getting harder and harder to respond- the physical task of typing (fumbling fingers) and the mental task of gathering thoughts and ideas plus the struggle of auto correct and poor spelling mean that it takes longer and longer to respond. Its hard for me to have messages in my inbox and not answer back (just like receiving a letter or gift in the mail).  I know its not forever but its still another thing that probably needs to be shelved... and that's hard."  
• Further down she added... "chemo 8 has been a lot of focus on what I can't do or can no longer do and that has been hard. And I think by having a few "see you later" messages and blogs will help it to not feel like a pending To Do thing and something that is not right now.  I want to change my 'have to' into 'want to's' and I want to use what energy I have in time with my Sparkles and the joy in the moment (not the have to or the should do's)...  The hardest part is changing my mindset of things I think I should do to things I want to do and CHOOSE...  Its the loss of choice I grieve the most."

• Breathing test and CT scan results... according to Aliza, she passed the breathing test... the doctor replied to her follow-up email with something like, "It looks like we are on track."  Later when I asked Aliza about it she told me that the CT scan was more for the doctor than it was for her.  She seemed comfortable with him knowing more about what is going on with her body than she does at this point.  The only changes that were imagined is that one of the chemo drugs would be stopped, but that was not the case.  Rob and Aliza meet with Dr. Azar this Monday before her infusion.  We anticipate a fuller report and conversation.
• Added to all of this, Aliza has shared with me another aspect of her emotional, intellectual, and spiritual preparation.
• She is hoping that she falls in the 70% group that reaches a point of remission after the 12 infusions.
• At the same time she acknowledges that she could require more infusions, different drugs, and perhaps some stem cell treatment.
• In other words, at this point she is hoping for the best and preparing for more difficulty and trouble.
• She has also realized that even with the best case scenario, her full recovery will be extensive.
• If everything stays on track, the 12th infusion will fall on Monday, June 5th. 
• Three to four weeks after that, she will have a full body PET scan to confirm that the cancer is in remission.
• If the PET scan results are negative, meaning no cancer, and the remission is confirmed, she will have her port removed a week or two after those results are in.  (She was hoping that it would be done before her 10th anniversary, which is July 7th, but that won't be the case.)
• She will be dealing with the side effects of the chemo (it will still be in her system) for several weeks, if not 4-6 months.
• After all of this, she will begin slowly getting back into shape, resuming more of her routine, and taking on her responsibilities at home and at work. 

This is possibly more information than you wanted.  I thought it would be best to err on the side of more being more than my usual approach of less is more.  Thanks for your patience and understanding.

Lillian turns 9!!!!!

There is a whole lot of "not normal" in our lives right now.

But when I can, I try to maintain as many traditions as I can for my Sparkles.

To celebrate Lillian's birthday she and I get our morning Starbucks before heading to her "official" doctors appointment.

Lillian likes the Vanilla Frappichino with a little drizzle of caramel on top.

For those that are newer to the blog and the Sparkle escapades, each Sparkle goes to see the Dr. on their birthday to turn their new age. At the end of their appointment our Dr announces that they are officially a year older and presents them with a birthday sticker. This has been a tradition since Madison was born and I have continued for each Sparkle.

 Practicing her math facts while we wait (can you tell she's not thrilled ;)

 Officially 9 and headed back to school :)

After a birthday shopping trip with Nana, dinner with our favorite cowboys it was time for a few family gifts before bed.

On Friday, Daddy picked her up from school for a special adventure.

And then dinner with just Momma and Daddy

A simple but lovely birthday celebration for the middle Sparkle.
May this year be another year of blessings with our favorite Lillian Nicole :)

Sparkle Play Time

Star Wars Legos 

                                                                Lego time with Daddy

                                                           Super Smash Brothers :)

                                                      Time together making memories

Easter

Braces off

I can hardly believe that 2 years has nearly passed since this beauty got her braces. 

May 2015 

April 2017 (yes I know is just shy of 2 years but close enough ;)

Just in time for her 15 birthday next month. 

Love my eldest Sparkle and her smile :)

Chemo #8

In honor of opening day at Wrigley (go Cubbies) I sported my team colors and decided that my "last" meal before my infusion would follow the same theme.

 I love my husband and the small indulgences he blesses me with-  like stopping at 4 different places for lunch
 (Starbucks for coffee, DJs for a Chicago dog, Primati brothers for my fries, and Five Guys for his burger fries and peanuts :)

 Then is off to downtown for my infusion. Blood work was routine and there were no changes to my treatment.
This was the first infusion that I asked to sleep and was blessed with a wonderful and compassionate nurse who did everything she could to grant my wish.
I still had to keep my mouth cold (frozen grapes and bananas) during the first chemo drug but was able to rest under warm blankets the remainder of the time.

 My end of infusion treat was to share a Peanut Buster Parfait from Dairy Queen on the ride home.

8 done, 4 to go.

I'm Still Here

Infusion #7 was kinder then the others with its own set of new. There was no extreme or immediate crash but a lot of fatigue that wasn't eased with rest (sleeping only to awaken as unrested and  weary as when I laid down hours before). Food has become more of an enemy then a friend thus adding another set of issues to be managed, tracked and accepted.

This past Thursday I returned to the hospital (on a non-chemo week) for my breathing test and a CT scan. I knew from my first meeting with my doctor that this check point would come and its purpose is to see the effect the chemotherapy is having on the cancer and to evaluate if minor adjustments need to be made immediately, as well as, to begin to plan the next steps.
Obviously the big fear is that the chemotherapy has not shrunk the cancer and worse that the disease has spread. Some might ask (and have) the stats for these scenarios but in reality the numbers don't matter to me- It is what is and until we know and we wait in anticipation.

As the fear and anticipation build, I feel as if I have been trying to out run my illness... pushing too hard, doing too much, striving for a normal of the past that is not reasonable or feasible for the present.
I have battled the demons that remind me of my  symptoms that began my journey that are ever present and or returning.

I have smiled when I have wanted to cry,
Snapped when I should have been kind
and Pushed when I should have rested.

Fear creeps around every corner and is quick to try to steal my joy.

While I can rejoice that I have reached this stage in my journey to healing, I would be lying if I did not acknowledge that I am weary to continue and fear the end is not as close as it seems.

As I prepare for another infusion (#8) the normal list of things to do is sitting beside me waiting to be completed and to be honest I am struggling to even look at the list let alone begin or even try to complete it. I am more aware of the obstacles that are common to my life now and how they create barriers to complete tasks.
Everything is harder and takes longer.

I am battling the pressures of my own expectations

I am wrestling with my emotions desperately trying to stay grounded in Truth

I cling to the hope that no news is good news and keep taking the next right step.

And I rest in the blessings and joy that faithfully appear

Longest Friends Visit

I was blessed to be surprised with a visit from my childhood friend (we are celebrating 25 years of friendship this year). 

We spent 4 days and 3 nights laughing, crying and living life together. 

Here are the highlights of our visit.

Starbucks

 Selfies

 Slurpees (and Movies)

 Shopping

 Snacking

 Starbucks

 and Smiles

Time with a friend is always the best medicine and greatest blessing. 

Sparkle Joy Minus 1

Just the reminder, pick me up, joy this Momma needed.

Posing with my Littles, wearing our super hero shirts and stopping to giggle together.

Just missing the eldest Sparkle :)

Even the toughest days can be brightened by adding a bit of Sparkle :)

Chemo #7

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

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

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!

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.

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, 

JOY

Peanut Butter and Jelly Sandwiches

 Painted Toes

and Pretty Scarves

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

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.