Chemo 3

Today is the day.
Chemo 3 and a doctors appointment- 1 chemo cycle finished (2 infusions) and a heading toward a quarter of the treatments complete (3 of 12)

A more detailed update to come... but in the meantime

May your day be filled with Joyful Moments and opportunities to Sparkle :)

Wii games and Ebay Stalking

Just a fun night at Casa de Sparkman

The Littles have been asking all week to play the Wii together and Friday night was the perfect opportunity for family night.

After a very healthy dinner of nachos we headed to the living room to play.

First up, Dance Dance Revolution

Cooper and I had the best seat in the house- cuddled together in the Momma chair and giggling at the silly sisters.

Next up was Super Smash Brothers with Daddy

And finally Mario Kart

Then with the Littles safely tucked into bed, and Madi enjoying some quiet time to read Rob and I indulged in a bit of adult activities.....

That's right, we spent 45 minutes stalking eBay auctions that were ending and waiting to see the final bids of the items sold :)

We were hunting for Nintendo Classic systems (retail $60) and watching prices soar on eBay for double the retail price.
The most humorous part is unlike most people who stalk eBay, anxiously awaiting the close of an auction to attempt to win the final bid, we already own the Nintendo Classic System (my sister bought it for me as a Christmas gift after stalking her local stores :)

Finally off to bed with a quick detour to play Mario Bros 3 on the Classic :)

I love Normal days
I love Family Nights
I love old school video games
and I especially love when my Sparkles are included in all 3.

Sparkling Sparkles

Even before my diagnosis I would occasionally ponder what my legacy would be.
While I know I am unique and special (Thanks Mom and Dad) I know that my life is ordinary... a Momma of 3, a wife of nearly 10 years, a part time admin in a small company, a member of a mega church, a participant in a life group, a friend to many.
I do ordinary things- grocery shop, run errands, homemaking, school volunteering, activities at church, an occasional missions trip.
Yet often when people think of a legacy (me included) I think of BIG- big donations, BIG projects, Life Changing experiences and Large groups of people impacted.

So how was ordinary going to translate to something like that.

And the other day, it all became clear.
My legacy was already happening, in an ordinary way with the help of my Sparkles and I was filled with tremendous JOY

Little did I realize so many years ago that a Momma nickname would turn into a way of living and blessing others.
My Sparkles.... My Legacy

Recently my uncle passed away and it was during the difficult conversation with the Sparkles that I realized our legacy was already being lived out.

Within in their grief of the unexpected passing of my uncle each Sparkle stated in their own way that they wished they had said Goodbye a little better, hugged a little tighter, played another game- if they had known it would be the last.
And as I held the three on my lap (quite the challenge these days) and snuggled them close the words just began to flow....

Did you Sparkle him?
Did you share your joy when you were together?
Did he leave better then he came?

(All in reference to our last visit together over Thanksgiving)

A tremendous joy filled my heart- our Legacy
Sparkling those that we encounter- spreading joy- and blessing others

As the tears turned to giggles of memories shared, as the snuggles turned to wrestling (it always does with three sparkles on one lap) a difficult conversation turned into a challenge for days to come.

And a Legacy was started...

Journey Together

For the most part, Sparkman Escapades is mine (a few rare entires from Rob) and has been since I began blogging in 2008 but a few years ago Rob started his own blogging (very different then the family and sunshine post of mine).

Recently his entires have been his perspective of our cancer journey and I hope you will take time to read it.

His blog (Pragmatist's Opinions) is on the left side bar of Sparkman Escapades or you can go from this link....
http://www.pragmolitics.com

I am reminded that this is not a solo adventure. That the hard days are not my own and that everything is better together.


May you be blessed by our journey and our stories- I know I am.

Hairloss and Banana Splits

This week has been tough....
2 infusions and this seems to be the pattern, the week after chemo almost being a greater struggle then the week of treatment.

Treatment week comes with its own list of toughness- when the symptoms are the worst and its about managing not relief, its about getting to the next day and the next and hoping that better days are coming

But week 2 is harder... its when your mind tells you should have more energy or appetite. When you feel like you should do more and can't. When the nausea is more tolerable and you debate whether to take the meds or tough it out.
Its also when the clock begins to tick that the next infusion is just around the corner, when sleepless nights begin to plague you as you ask yourself can I do it again, am I ready

And this week 2 included beginning (and fast) loss of my hair

I would be surprised if the first question that most people ask about chemo is if they will lose their hair (it seems to be the most known side effect of the drugs)
It certainly was one of mine. And while there is no guarantee that a person will or will not lose there hair, it was a discussion that my doctor and I had starting day one.
He was clear to make no promises but also gave the facts of what to expect...
Hair loss will occur 2-3 weeks after second chemo
Hair will typically come out in chunks or large bunches

I while these things were helpful to know "before" it happened it didn't really prepare me for the reality.

Because like all things Me, I don't follow the normal pattern or expected

My hair began to fall out 5 days after my second infusion.
When your hair falls out, it hurts.... your head just hurts
Yes it comes out in chucks but also in strands, constant shedding and large masses.

And I was certainly not prepared for the sadness that would go hand in hand with each strand.

Because facing this every morning is hard...
the first look in the mirror after a shower wondering if today will be the day someone notices
The pending questions of when to shave the remainder off...

Its just not something you can prepare for or think ahead about

Because losing your hair is not a out vanity or even beauty, its a bold statement that tells the world I am fighting a battle and the battle is hard
Its a reality that you can't easily ignore or pretend isn't there.
You can't escape the reminder

For me, losing my hair has been more shocking then hearing the cancer diagnosis. It has created a greater challenge to CHOOSE JOY each day instead of wallowing in the sadness or unfairness of my illness.
It means hugging my Sparkles a little tighter as they too cry for Momma's hair and reality of the months ahead.

And it means that through the tears and the sadness that there is joy to be seen and experienced but I have to choose to find it

So with each strand of hair lost, I have been blessed a joyful moment

• a text from a friend sharing her joyful moment of the day and asking for mine (received right at the moment when the tears are flowing and the sadness is strong)
• a farmhouse sign on clearance given by a friend from far away to add joy to another room in our home (may there be as much joy as their are Christmas trees during Christmas Palooza she said) 

• flowers from an aunt and uncle to brighten the room 
• extra snuggles with the sparkles 

And on the really tough days,

Banana Splits- guaranteed joy :)

Your days be filled with joyful moments too

Lists

It is highly encouraged throughout this process to keep a journal- to track your emotions, thoughts, symptoms and questions and while I would say that I most often am a Queen of List Making in this area I am failing... at first it was because I couldn't remember my thoughts long enough to write them down  (think Dory from Finding Nemo) but now I realize that its more about being stubborn and a bit wishful that if I don't write it down, it will go away. That the nausea really doesn't last nearly the entire two weeks between treatments, that my days will be more joyful then sick, that I really don't have THAT symptom that some people experience

And yet in the midst of being forgetful, stubborn and a bit wishful I was robbing myself of Joy

Because not writing it down doesn't make it less true or less sucky
Not writing it down doesn't decrease the frequency or increase the probability

Not writing it down only means that I am left riding the same merry go round of thoughts and symptoms and missing the opportunity to live in the JOY

So today I started writing it down and I was immediately blessed

Because the worst of the nausea is only the first 7 days after chemo (at most 10)
Because sometimes a shower and clean comfy clothes is enough of an accomplishment for one day
Because there are a few good hours each day where the symptoms are at bay and there is relief

It is so easy to get dishearten on this journey to healing but that was not the path I chose from the beginning.
I choose joy and I hope you will too

Be Prepared

Anyone else immediate think of Scars song from Lion King.... well I did :)

I love Disney.... and quite often I can relate most thoughts and conversations to something Disney and so it is not surprising that following my 2nd chemo infusion the song "Be Prepared" from Lion King has infiltrated my thoughts and quiet moments.

Because while the infusion itself went better then I had hoped (or at least better then the first) there was much to "prepare" for....

Be prepared that nausea will be a reality for the next 7-10 days 

Be prepared that fatigue will plague your days

Be prepared that the only thing you might accomplish today is a shower 

Be prepared that the risk of germs and infections is escalated in such a way that changes must happen

Be prepared that for every symptom the meds can alleviate the side effects might be worse 

Be prepared that my hair will fall out (its a matter of when not if) 

Be prepared that no matter how much I have thought about it or planned that there will still be surprises and unexpected things

Be prepared that while I am going to conquer this disease I will also hate the fight (most days)

And as easy as it is to make the list and say the words it is quite difficult to embrace this new reality 

Because knowing it and living it are two very different things 

Nothing prepares a person to have cancer and nothing prepares the cancer patients family for the journey. 

All you can do is walk through and find the Joyful Moments 

2nd Chemo

2 done- 10 to go.

I am so blessed that my fears were unfounded and the second chemo went better then the first. It is still a very steep learning curve and easily becomes overwhelming to take in all the information. The four plus hours is physically and emotional exhausting and leaves me with limited energy.
At this point please know that no update = going as planned and we will update as soon as I am able.

Since this was the second chemo of the first cycle I did not see my doctor before my infusion.
I checked directly into the infusion center (same building but down the hall from my doctor) an shortly after check had my port accessed, line put in and blood work drawn.

Then back to the waiting room to await results of the blood work and to wait for a room to to become open for my infusion.
We waited about an hour before being taken back. (probably pretty normal although on weeks I see the doctor I believe this will not be as long or filled with other things).
It gave me (and Rob) some time to chat, make a few lists and to be a bit more prepared for the day.

This time we were given a chemo room instead of the cubby.
It had a bed and jack and jill bathroom within. While it did have a door, it was not closed so it was still fairly open.
I learned I prefer the reclining chair instead of the bed so next time that will be my request.

Another reason for the delay was regarding my blood counts.
Most stayed the same but the two numbers that fight infection and suppress my immune system were way down (12. 5 at my first infusion and 1.5  for one and 8.9 for the first and 0.2). With my given numbers they are well below there acceptable range (3.6-10.6 for the first number and 1.7-7.5 for the second one). This is not uncommon for cancer patients and particularly for lymphoma patients as my cancer is directly related to my immune system.
The blessing is that even though the numbers are low it did not stop me from receiving my treatment :)

Every treatment and doctors appointment they draw my blood and do a full work up and carefully monitor my numbers.

The lower immune numbers means being a bit more cautious about exposure to germs- lots of hand washing and avoiding sick people

From arrival until departure we were at the 4.5 hours.  A lesson in patience and accepting this new normal.

During my infusion I chatted with rob and watched HGTV (Fixer upper :)
the time pasted quickly and we were soon on our way to eat (the hardest part of chemo being at 10 is that lunch is in the middle of my infusion).

I had decided before my infusion that I wanted Pad Thai for lunch from my favorite restaurant (Bangkok Kitchen). It tasted just as good and I had hoped and although my appetite was small I was a blessing to have food to eat :)

We have a good plan in place for this week to manage my medicine and hopefully make things as smooth as possible.

Your continued prayers are felt and greatly appreciated.

May your days be filled with joyful moments.

A.

Awana Mishap

Sometimes when it rains it pours...

Wednesday evening while at dinner I got a call from the Awana leader that Lillian had gotten hurt. She was bandaged up, brought home and we immediately left for the immediate care.

Waiting at the Immediate Care with an Ice pack

 First look at the cut and the explanation for what happened
Apparently they were playing at game time. Lillian was crawling on the floor (per the game) whenever another child tripped over her causing Lillian to smash her head into the ground. The force of impact broke her glasses which then stabbed her in the forehead.
Yes- her injury was caused from her own head and own glasses :)
Oh the talents of my Lilli-bird

 Although the cut was fairly deep it was not wide (deep puncture wood from the glasses) it was opted to use Dermabond liquid stitch to close the wound.
She was very glad to not have to get a shot or to have stitches.

 Waiting for the glue to die and smiling for the promised lollipop (she picked red)

 Bandaged up and reading to go home- in and out in less then an hour

 And the next day, time to shop for new glasses which were put on rush order and arrived less then week later :)

The storms may come but the blessings that follow are never far behind.

Here's to a less eventful Awana this week.

New Normal

I have faithfully been called stubborn throughout my life (mostly because it is true) and I have often tried the more difficult path- wanting to learn for myself and needing to know for certain not just making an assumption.

This journey is no different.

Each day I try to do something I have done before... and am quickly learning that a New Normal is my future.

Mondays adventure included driving myself (which I have rarely done since my diagnosis) Target.
It was a solo adventure that needed to happened and I learned a lot.

I learned that Normal is good and needed

In this case normal was my favorite handbag, Target and Starbucks

It was a blessing (and exhausting) to adventure out alone with a list in hand (I go no where without a list now days) and to slowly do for myself what others have so graciously stepped up to do for me. I had to be intentional with where  I walked, think ahead the shortest distance to the things I needed, and to even take a break to sit in the middle. As I walked the quiet aisle (I think it was me and 2 cashiers in the entire store) I felt peaceful that I had tried and learned that solo adventures are a thing of my past (for now), that doing it on my own, by myself just might not be the new reality. 

I learned that I can't do the same Normal any more and the great part... I am ok with it.

Because I tried, because I know it to be true and because I see the great potential for joyful moments with others.


May your day be filled with joyful moments

A.

Happy Birthday Papa

Happiest birthday to my dear Dad- I love you bunches and bunches.

Kindergarten Awards

Learning to celebrate the small victories... making it to the Littles Award ceremony at school

(Lillian was too quick to get a picture :)

Both Littles received Academic Excellence and Character Awards :)

Well Done Sparkles- Proud Momma 

First Chemo

Here is the set up for my infusions...

A semi private room with a  recliner, pillow and hot blankets on hand,  a place for a visitor to sit and a tv with cable :)

My first infusion went well (I don't really know any different). The staff were kind, attentive and very much patient focused. It was a long time to be seated (over 4 hours start to finish) and lots to learn but I have plenty of time.

A few lessons I have learned already.

1. Cancer is a life-altering diagnosis. Regardless of the stage of my cancer, the number of treatments or success rates. Cancer sucks.
2. I have heard often that I am strong, but the flip side to this is that on days when I feel un-strong (when getting out of bed seems like the greatest mountain to climb), being told I am strong makes me feel like a failure.  I feel like I am doing it all wrong if I am having a bad day (especially when its so early in the journey and I know even tougher days are ahead). 
3. When people ask if there is anything (generic) they can do... this gives me the homework of figuring out what they can do to help, then the burden of having to ask if they can.
4. Don't wear jeans (even if they do match your button shirt- they are not comfortable).
5. Get a different button shirt (or a hoodie that can access my port). 
6. Layers are not always a girls best friend. 
7. Communication is difficult, if even possible, on infusion da. All of my energy is needed to receive the treatment.
8. I am dearly and deeply loved both near and far.

I also learned that one of the reasons I feel so at ease with my doctor is that he reminds me of someone.

Many people do not remember the show Perfect Strangers (not sure I actually remember what it was really about), but it was a show I remember watching with my sister growing up.

In the show, Larry (left) finds himself roommates with Balki.

My dear hematologist Dr Azar (not pictured) reminds me of the actor that played Balki.
Balki was kind and patient and quick to care for others and that is how I have felt since I met Dr. Azar several weeks ago.

And I guess right now, in the midst of the uncertainty. In the midst of all the unknown or whats ahead a bit of kindness goes a long way.

Pizza Nights

Just an ordinary day.... Sparkles, Pizza, Movie and Snuggles

Quadruple moments of Joy for this Momma

Thoughts to ponder...

A dear family friend and fellow cancer fighter shared a series of articles and I wanted to include a few highlights that resonated with me that hopefully will be a blessing to others.

The first article talked about helpful tips for supporting a friend. I included 10 of the items listed (with a few personal updates).

•   Make plans. Don’t be afraid to make plans for the future. This gives your friend something to look forward to.
•   Be flexible. Make flexible plans that are easy to change in case something comes up.
•   Laugh together. Be humorous and fun when appropriate and when needed. A light conversation or a funny story can make a friend’s day.
•   Allow for sadness. Do not ignore uncomfortable topics or feelings.
•   Check in. Make time for a check-in phone call or text. Let your friend know that it is okay not to answer the phone.
•   Offer to help. Offer to help with specific tasks, such as taking care of children or preparing a meal. However, if your friend declines an offer, don’t take it personally.
•   Follow through. If you commit to help, it is important that you follow through on your promise.
•   Treat them the same. Try not to let your friend’s condition get in the way of your friendship. As much as possible, treat him or her the same way you always have.
•   Talk about topics other than cancer. Ask about interests, hobbies, and other topics not related to cancer. People going through treatment sometimes need a break from talking about the disease.
•   Read his or her blog, web page, or group emails. Often, people living with cancer blog about their experience to share with friends and family.
         Sparkmanescapades.blogspot.com
         Mycancercircle.lotsahelpinghands.com/c/738201/

The second article talked about the layers of people involved in the cancer journey and how they relate to one another.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. Repeat the process as many times as needed. 

In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. 

The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring. 

Everyone else can say those things too, but only to people in larger rings.

Comfort IN; Dump OUT

I liked most this idea….

It was extremely helpful for me (and a few family members who have also tried it) to draw my circles of support; another reminder that this is not a solo journey. It helped me to see how loved I am to be surrounded by so many people that care for me and Rob and the Sparkles. It reminded me it was ok to be in the center and that there will be feelings that of mine alone.

I liked the freedom to not have to carry everyone during this journey- caring and love them, making sure they were handling everything ok and trying to be Brave all the time.

And while I understand the idea of dumping out (i.e. not adding more to the center ring or rings), I would challenge others to Dump Up: lift your concerns to God in prayer, He can handle it. That when we speak out to the other circles, it is to seek encouragement to press on. 

Happy New Year

Love,