Chemo 4- Recap

Getting ready to go...

Comfy clothes, a tote full of things I won't read, do, or look at but just in case, and a cowboy heart cookie for the road

Sunshine, smiles and Starbucks- we are ready to go.

As has become the norm, we arrived, valet parked the car and headed to level 2 for blood work and my infusion. 

As has also become the norm, after completing the blood work, I had to wait for the results and doctor approval to begin my 4th infusion. 

My counts seem to be holding their normal and after minimal waiting we were escorted back to my infusion room (same room as infusion #3 :) 

I am most comfortable in the recliner and quickly settled in to begin. 

The infusion went as planned and on schedule and we were heading home 4 hours after arriving.

What is also the norm is the Chemo Crash- the feeling of being hit by a bus, when the slightest movement sends a wave a nausea over me, when the only relief comes with sleep. 

For this meticulous planner this is one of the hardest aspects, not the Crash itself as by now we have a routine for managing meds and resting as much as possible, the hardest is the unpredictability of when I will Crash. 

Some weeks the Crash occurs day 3 or 4 and other times (like this infusion) the Crash happens almost immediately. 

Its the unexpected and unpredictability that brings the greatest shock. 

And when the Crash hits... it looks like this. 

Sleeping in the recliner, sleeping all the time,  moving as little as possible waiting for the blinding nausea to pass and for human days to re-appear. 

I feel like road kill- lying and suffering and waiting for it to be over 

(not that I know what road kill feels like :) 

Time slowly passes and its easy to get discouraged and when discouragement hits, its when Cancer Sucks the most. When the tears freely flow and anger bubbles at the surface and the unfairness to walk this journey hits me in the face. 

But after a good cry, or a few moments of "this is unfair", when the anger ebbs away, 

 I choose to find Joy and i don't have to look far. 

Thank you to each of you that is sharing my journey, for your support and your love and for holding me up in prayer.

Thank you for the tangible rem diners (cards, gifts, text messages and dates on the calendar to look forward to). 

And especially Thank you for never allowing me to feel like I am doing this alone. 

May you too be blessed with Joyful moments each day

Moments that encourage you and remind you that you are dearly and deeply Loved :)

Joy Full Mantles

During this journey, there are many things that are out of my control and for those that know me well can understand the added struggle and sometimes distress that this may cause.

On my healthy days, the lack of control and stress would result in the rearrangement of the furniture in my home (the number of rooms determined by the amount of stress). but during this season of healing my days of whole rearrangement are on hold or at least toned down.

This weekend I re-arranged the mantle- out with the snowmen (its February and the weekend temperatures were in the high 50's) and was determined to have a Valentine theme in its place.
This proved to be slightly challenging as I did not think I owned any Valentine decorations (at least not a specific box labeled Valentine decorations in the attic) and I was running on low energy and limited on exposure to germs.

So I hunted the house, day dreamed in my chair and slowly the mantle transformed.

There was just one thing missing.... and my mini adventure to Hobby Lobby resulted in the perfect piece- a sign (left edge) with the scripted words Live LOVE Sparkle

Upon arriving home I carefully arranged the pieces and stepped back to admire my display.

Another moment of Joy for my day and my journey

I will admit that mantle re-decoration does not quite give the same satisfaction and stress relief as furniture rearranging but for now it will have to do.

May you too find an alternative Joyful moment

Hair Loss No More

To date I think this is the hardest post I have had to write.

It marks the next largest step in my journey to healing and has also been the most emotional and hardest to accept.

Its the step you hope you don't have to take and deep down you know you might. It's the one that only those that have walked this road can understand.

Its a decision that I wrestled with, prayed about, cried over, and finally accepted.

And as much as I would like to think I have been open and honest in sharing I realize that I have strongly filtered and avoided this reality.

But the time has come to accept the past in order to embrace the present


This picture was taken December 23rd (a month after being diagnosed with Stage 2 Hodgkins)

That day I hated having my picture taken, afraid the world would know the journey I faced and would pity me. I hated that when I looked in the mirror I wasn't sure I recognized the face looking back at me and feared there was more to lose before it was over.

Quickly the journey to healing began with the implantation of my port a week later and my first infusion the week following that.

There were days of Headbands and Smiles

Mornings when all I could do was to face this new reality with the best tools and attitude I had

and mornings where this Ninja cancer warrior didn't want to face the battle ahead, when tears came before smiles, when I needed a moment before facing the mirror.

I had been warned that not all chemo patients lose their hair and while I knew there was a chance that I might not I chose instead to prepare myself for when not if. I was careful to respond to the Sparkles in the same manner and to make no promises of how long or when it would happen.

As previously blogged, my hair began to fall out several days after completing my second infusion and rapidly decreased the volume of my hair by 50% or more within that two week period. The next infusion continued with a steady though not as drastic decrease of my hair resulting in bare patches and significant thinning resulting in a state of anxiety and stress I had not anticipated. It became difficult to mask the bare spots and to cover up this new found insecurity.

And with many tears I knew it was time to take the next step.

So with the steady hand of a dear friend, a well charged clipper and an empty kitchen, I boldly stepped into this next season

Tonight as I prepared (and procrastinated) writing this post I noticed something between the first and the last picture... there is still a smile on my face that in the midst of all the scary and unknown, the maybes and could's, I can still find a reason to smile and all I can do is take the next step.

The toughest part was making the decision to boldly step forward and to allow my outward appearance reflect my inward battle.

And now that the decision has been made (and executed) I can now breathe a bit easier, there is no more guessing if it will happen or will I know when its time and I can focus my energy and attention on my next infusion.

Meal Time

Whether eating at home

Or eating out

I treasure the meals with my Sparkles

Its a time of laughter and chatting and moments to focus on something besides my illness, treatment and side effects.
Its set time each day to giggle and smile and sometimes whinge and always a time to be grateful

Lillian's Report

Recently Lillian completed a report and presentation on the Dominican Republic.

She spent several weeks and countless hours gathering her information and creating her display. 

We are so proud of her hard work

Job well done :)

Colors of Support

To end my last doctors appointment I saved my most pressing question for last...

What is the awareness color for Hodgkins Lymphoma?

My Doctor smiled and said-

Lymphoma is LIME GREEN
Hodgkins is VIOLET

When pressed further, which is the most "appropriate" color to wear he smiled and asked,
Which color would your Sparkles pick? Wear that :)

The perfect answer and the more I thought about it the more I found that yet again I have been blessed with Joy is journey

Both colors are easy to incorporate into wardrobes or accents and I had both a girl and boy color for my Sparkles.
Both colors are distinct and easy for others to wear in a show of support


That evening. when I shared with the Sparkles, they were not so keen to have two colors and getting to pick.
Lillian did not think that was official enough.

And then it came to me, the perfect explanation....
Lymphoma is like a last name (Sparkman) so Lime Green is for the whole family but if you want more specific you need to know a first name (Hodgkins) so thats violet.
The light bulb clicked and Lillian was animated as she found Joy in this new information.

As I tucked Lillian into bed, I saw the wheels turning as she began to think of ways to "wear" Momma.

And finally as  I typed "lime green violet turtles" into my google search this was the image that appeared...

Joy again
A lime green, violet wearing, Ninja (fighting), turtle
What a perfect imagine for me :)

May you too be blessed with unexpected Joyful moments :)

Cancer and Rubber Ducks

Recently when waiting for my infusion, I noticed a large display of Rubber duckies.

 Upon a closer examination of the collection, I read the story behind the collection and the woman who started it.

Jeanne Craig was diagnosed with breast cancer in 2011 and during her chemotherapy developed her "fear fighting" advice-‘Just keep ducking- Don’t live in the fear; let the fear and the worry go and just live.” The plaque further explained that this advice evolved from a concept she read in a WWI story that said terror can be endured so long as a man simply ducks, but it will kill you if you think about it.” 

“A lot of recruits in WWI were killed because they were so wrapped up in the fear, they forgot to duck when they should. If you were living in the moment and not wrapped up in the fear, then you would know when to duck and would continue to live.”

Fear goes hand in hand with a cancer diagnosis, and it is very easy to get caught up in the worry and fears of the disease and forget to live. 

The cheerful yellow duckies are a wonderful reminder to "duck' the fears and worry and focus on the Joy that is right in front of you. 

Buddy and I learned that Jeanne has sent and given over 3500 ducks to fellow cancer patients beginning or enduring thier journey. 

Upon further examination of the display, I mentioned that it was missing a Rubbery duckie nativity...

To which Buddy replied.. is there such a thing....

Thank goodness for Wifi and google... and I showed her that there was (and that we owned it). 

To further pass the time we discovered that there were over 15,000 hits on Amazon for typing in the search bar... rubber duckies. 

Some of our favorites included:

Harry Ponder 

Bride and Groom and Wedding party set

Medieval set (including ducks in armor)

and 

Fairy Tale Ducks 

We were so involved in our duck search that I missed my name being called (3 times) to go back for my infusion. 

Needless to say, this was definitely a joyful moment in our day and an opportunity to remember to "duck" the fear that looms.

Dr Approved

Another highlight of my doctors visit was our discussion on the health benefits of banana splits :)

We are in agreement that since its dairy, protein (nuts) and 2 fruits (banana and cherries) that it is definitely something that can stay in my diet :)

Another blessing and definitely a joyful moment of my days

Headbands, Hats and Hair Loss

First I must offer my apologies for any misunderstandings I may have caused with my initial hair loss post.

While I have lost a significant amount of my hair (at least 60%) I am not bald yet.

The loss of my hair has been extremely emotional for me and not something that I was truly prepared for. (I am not sure how anyone could actually prepare for losing their hair)

In the last few weeks, I have been experimenting with my new normal and trying to find what will work for me
I have tried...

Headbands

and Hats (of several varieties)

and I will be honest that my favorite so far has been the ones that I have received from loved ones as gifts or as a matching set (they have the same one as me).

Yet I haven't found "the One" yet. and I haven't taken the plunge to shave my head yet (though the time is fast approaching)

And as I ponder what is holding me back I know its because this is hard.

Because nothing is making this change easy. No hat or headband makes you feel as pretty or lovely as your long hair did.
No style or color accents an outfit or a mood the same as a hair style and nothing feels as permanent as the moment right now.

Its the last strands of normalcy before the world will know I am battling cancer.

But with battles come victory and with victory there is hope.

So I will hold to the Hope that is promised and seek joy each day in every moment.

May your days too be filled with joyful moments

My Buddy

Feel free to begin humming the 80's commercial jingle as your read along...

This woman on the right has been My Buddy for over 20's years.

We have sung in church choir together, attended church, built habitat houses, laughed, cried, shared the birth of the Sparkles, the death of loved ones, and everything in between and now we are sharing my latest journey together.

She is my cheerleader, my chauffeur, my door holder, my listening ear, my coffee getter, and my dear friend.

I am blessed to have My Buddy to share my journey and I don't know what I would do without her.

She is always there when I need (even last minute) and when I am with her I know everything is under control.

Love you Buddy and thank you

The beautiful woman on the left is her Momma- Martha. She makes the best green beans and has also blessed my life for the last 20 years :)

Chemo 3 Recap

This is how it started...

being chauffeured, drive thru Starbucks (Skinny Caramel Macchiato), and a sun shining day.

After valet parking the car (always an experience) I headed upstairs for blood work and another doctors appointment.

Every two infusions I will meet with my doctor to check in and see how I am doing, answer any questions and discuss any concerns.
Each time I meet with Dr. Azar I am affirmed that I with the right doctor for me and that I am in the best hands.

We agreed on a few minor adjustments to my meds and he encouraged me to be faithful and consistent in taking them as that will result in the best relief.
There were a few ah-ha moments and moments of relief that what I was feeling was typical or to be expected given my diagnosis and treatment plan.

Overall, I left reassured and ready to face chemo infusion #3.

For the first time, things were running on schedule and I was quickly settled into my infusion room (with a recliner :) and began eating my yummy Panera salad while waiting for the return of my blood work and the start of the infusion.

Overall things here went as planned. There was slow start to the infusion as return of my blood count identified a few concerns that needed doctor approval. My numbers are holding their own in all areas but the the creation of new white blood cells (absolute neutrophil). While this number significantly decreased from chemo 1-2 it dropped to 0 beginning chemo 3 thus indicating that my body is not making new white blood cells. While this can be a treatment stopper for other cancer patients, for a Hodgkins patient it just means I need doctor approval to continue with treatment (a quick phone call from the infusion department to the doctor down the hall). It does mean that I have a very high risk to contract infections and must be extremely cautious .
The delay gave me just enough time to finish my salad and it was time to begin.

The infusion took a little over 3 hours to complete and soon we were heading toward home.

It was during the drive home that something felt different.

Upon arriving home, this is what i was greeted by...

A very itchy and unexpected rash.
So instead of a nap, my afternoon was spent calling the doctor, managing the itch and a bit of worry and fear that I was having a reaction to the infusion drugs and there would need to be  a change to my treatment plan.

But a bit of Benadryl cream, a much needed nap and a reassuring follow up call with my doctor and the reaction was under control. Further investigation is under way to identify the cause of the reaction and hopefully avoiding it for the future.

The days post chemo were spent resting and taking advantage of spurts of energy and finding joyful moments to bless my days.