Sunday, April 23, 2017

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 :)

Friday, April 21, 2017

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.

Thursday, April 20, 2017

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.

Tuesday, April 18, 2017

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 :)

Monday, April 17, 2017

Sparkle Play Time

Star Wars Legos 
                                                                Lego time with Daddy
                                                           Super Smash Brothers :)
                                                      Time together making memories

Sunday, April 16, 2017

Wednesday, April 12, 2017

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 :)

Tuesday, April 11, 2017

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.

Monday, April 10, 2017

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

Saturday, April 8, 2017

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.

 Slurpees (and Movies)
 and Smiles
Time with a friend is always the best medicine and greatest blessing. 

Monday, April 3, 2017

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 :)