Monday, February 1, 2016

Taking on Transplant

(Food for thought, I have loved this saying since the beginning of my journey)

Yet again I have a lovely sleepless night. 
As I sit here, my mind races through both my recent past experiences and the final stages of my cancer treatment. 

These past few weeks I have had the opportunity to socialize- finally breaking the monotony of constant hospitalizations and house arrest. Through this, I have noticed a common response to my upcoming Stem Cell Transplant. Understandably, very few know what it is. That being said, I thought I would take a few minutes to explain.

First off, there are several different types of transplants. The one that I will be undergoing is called an Autologous Stem Cell Transplant. Simply put, I will be receiving my own Stem Cells through this transplant (opposed to receiving a foreign bone marrow transplant- somebody else's). The blessing of the Stem Cell Transplant is that I will not be facing the high risk of my body rejecting a foreign host. Due to the fact they are my very own stem cells, there will be no problem with acceptance.

Now for the main question . . . How does it work?
This past June I had the pleasure of getting my stem cells harvested. The process only took 7 hours of my blood being constantly recycled through a harvester. 

(The ever so lovely Stem Cell Harvesting)

After this process, they froze the stem cells until they are re-injected at my transplant. 
For now the plan is this . . .

On February 10th, I will have the results of all my scans (there are quite a few) along with the consult and consent to have the transplant done.

On February 17th, I will be admitted to the Bone Marrow Transplant Wing on P4 (where I have lived for the past year ;). That morning, they will place a Double Lumen (dual headed) PICC Line in my left arm to provide a total of three access points to my heart (don't forget my main Port in my chest). A PICC line is inserted into the vein at the bend of one's elbow. The line is pushed until the catheter reaches the heart. 

On February 18th, they will begin the five days of high-dose, intense chemotherapy. How intense is intense, you may ask. In transplant cases, it will completely destroy the blood-producing cells in the bone marrow. At this point, the body will be in an extremely vulnerable position. Even a common cold can place the patient in a critical-even fatal place. For safety precautions, I will already be placed in complete isolation.

On February 24th, they will finally administer my very own frozen stem cells! It will take 2-3 weeks for the stem cells to make their way to the bone marrow and begin reconstruction. Once this process is complete, they expect me to have been in the hospital for a month. 

In the end, the transplant will truly be an interesting, adventurous, and painful process. However, this is bringing me one step closer to kicking cancer! I look back at what I have come through and can only stop to thank God for His love and protection this far. I am truly blessed to have such an amazing support and prayer group! You all are part of Caleb's Crew, and I am humbled by your love.

In conclusion, please remember that though we have come this far over these past 10 months- I still have 5 years of dreadful scans ahead. Though I try to stay optimistic- the common scanxiety is already sinking in. I've watched so many fellow Ewing's fighters be taken Home after they thought the fight was won. Ewing's is notorious for making a return, and when it does- the chances of beating it quickly fade out of reality. Please pray that this is it . . .
that my chemotherapy, radiation, and Stem Cell Transplant do their job! 

In all honesty, my life is in God's hands. We have done all we can physically do- now it is a matter of trusting Him to perform His plan. 
His ways are higher than mine. 

So much love to you all!

(Legolas has been growing like crazy. I've loved having time to hang out with my baby!)

Sunday, January 10, 2016

Caleb's Cancer Fact Check

I find it interesting how little something matters until it invades your world. 
After being abruptly thrown into a world of hazardous drugs, infinite transfusions, endless needles, and a sincere case of sickness, I find it a bit amazing that so many people can live in their own blissful ignorance. 

This isn't another rant about Childhood Cancer Awareness. Rather, I'm trying to help open our eyes to the reality that every single day, 43 children are diagnosed with cancer. I'm really happy for all of the great awareness for Breast Cancer - I'm not against pink. However, where is the voice for the thousands of children that die every year? 
Where is the voice for the next generation of children?

Before Ewing's Sarcoma, I was totally ignorant to the realities of cancer world. Even though I planned to enter into pediatric nursing, I didn't have the faintest idea of the pain that cancer inflicts. 

Through this past year, I have talked to, played with, and cried and prayed for so many fellow cancer fighters that I have met. Together we are bonded by a reality that every human dreads. In 10 months I have watched so many incredibly strong warriors finally beat their cancer. Though I would wish them a long and healthy life, God has seen fit to take them out of this world.

Again, please remember that before cancer I didn't know more than most of you reading this post. But that is why I am writing. 

I am here to give a straight-forward, brutally-honest, candid presentation of what cancer entails. 

I've found that though people want to help, many times the things that they say only make our fight with cancer much harder.

For example, please do not tell me that I am doubting that God has the ability to heal my cancer . . . that really doesn't help me, and it isn't true.

I completely understand the incredible healing powers of God. He has healed people when Jesus walked the earth, and He has spared the lives of people throughout history even when their prognosis was grim. Yet on the other hand, God chooses to eternally free cancer fighters from their battles- whether we are ready for it or not. God's ability to heal cannot be a cop-out to help those who aren't even involved in the fight.

When you are with a cancer fighter, learn to love them and cherish the moments with them. Learn that though you can never understand what they are going through, you can at least give them what they need most - unconditional love and unwavering support. 

Anyways, that was my public rant / awareness post / wake-up call.

In no ways does the end of this blogpost apply to all of my readers! In fact, it may not apply to any of you. However, you would be surprised to hear the thoughts of those whom I have interacted.

So with that, this is the end of my coping with their thoughts.

Thank you for listening and learning from my journey!

Love to all my Caleb's Crew Supporters. You are all the best!

(Night out with my plowing partner, Lego)

Saturday, January 9, 2016

Finally Meeting My Milestones

(Super excited to be surprised by my best friend, Will, up for a weekend!)

In the past week it has come to my attention that a lot of you are wondering, "How am I doing?". So for this post I decided I would go ahead and update on the happenings of my treatment.

As of last week, I received my final 5day inpatient chemotherapy. Due to the fact that scans are looking good, my "Tumor Board" and Oncology team decided to eliminate two entire months of chemotherapy- Totaling six treatments!

To me, I approach this with both excitement and concerns. 
On one half, this is amazing- the cancer is getting kicked and we are more concerned with the long-term side effects. (Notice "long term" here, that's a good sign!)
On the other half, I'm quietly remembering the not-so-beautiful odds that this cancer will return. Though my friends tell me to not let these ugly (and they are ugly) statistics haunt me- how do I not? They represent the enormity of my fight against cancer.
That being said- I'm nervously excited! 

This coming Wednesday I will be headed into the hospital for my last inpatient stay (2 days)!!! This is a huge milestone. In the last ten months of treatment, I have been inpatient at the hospital 130+ days. I am shocked that this day has finally come, yet way more excited to finally let my mind wander to the glorious days of normality that await me on the other side of treatment. After finishing my chemo, I will begin a few weeks of testing to see if I will make the cut for my Stem Cell Transplant. If I do, I will begin the second week of February. This grueling procedure will have me inpatient at the hospital for 3-4 weeks. Definitely won't be fun, but is very necessary. 

Overall, we can see that a lot is happening in Cancer-land. Milestones are being reached, cancer is being kicked, and normality looks almost within kissing distance. 

Yet, I find myself torn.

Now I am facing a different kind of battle. 

My main source of cancer-killing awesomeness is about to end.

What then?
How do I resume normal life knowing that my cancer could so easily return?
Has the chemo actually destroyed all of the cancer?
Will I suffer from a lot of chemo side effects?
Will I be joining the less than 30% that have beaten their Ewing's?

Which brings me back to the point of questions and concerns. One side of me wants to go absolutely nuts with the "Nursing Perspective" inside of me. The honest, statistical, fact-driven side of me. Yet I'm learning that with Stage 4 Bone Cancer- maybe that's just not good for my morale or mental state. Maybe it's better to leave my survival statistics to the One who allowed this cancer into my life. 

Quite honestly, I'm looking at just making the absolute most of these next five years. I want to be able to live life like a normal 20 year old. I want to accomplish my dreams of finishing Nursing school and take those trips around the world that I used to think were out of reach.

I want to live like my cancer will never return.

Honestly, the chances it will return far outweigh my chances of winning.

However, this is cancer-kicking Caleb, I have almost finished treatment . . .  

and I have an awesome life to live!!

(At 12:00 AM on New Years Day, the first thing I did was receive my last 5day dose! Way to celebrate, eh? )

Sunday, December 27, 2015

This Too Shall Pass

(An awesome night of ice-skating with best friends. Thankful for great Christmas memories!)

I cannot be more thankful for the past two weeks of chemo-free bliss. Though you wouldn't think two weeks would make much difference, it has actually been a relief from the constant droll of the normal chemo schedule.

I would say this past holiday has been harder than I expected. When you face a disease that constantly overshadows your life, it seems extremely easy to let your mind reminisce on the past. Days that seemed hard then now look heavenly. As I have talked to fellow cancer-fighters, I have found that Christmas can be two-faced. On one side, you enjoy the incredible time with your loved ones. Yet in the back of your mind, you dread the thought that next year could easily be far worse.

With that in mind, I find that my best option is to press on. The end is drawing closer with every round of chemotherapy. My Stem Cell Transplant is quickly arriving, and I can finally let my mind dwell on the reality that I will soon be able to return to a "normal life." I don't think anyone that has not had a true relationship with cancer really understands how much cancer really takes away. It seems the general conception of chemotherapy is that it stinks - but you will get through it. 

I truly wish it was that easy . . .

(My ever so faithful pump, kindly filling me with cancer-killing drugs)

Seeing that it is now Monday, I will be heading to the hospital at 8:00 for the first day of a five-day stay.  After doing this every three weeks for the past nine months, I have actually mastered the art of surviving five days of chemo terror. 

Benadryl (25 mLs) = knock myself out . . .

When dealing with these drugs for so long, I have learned it is better to sleep through the nausea rather than brave it out. Being tough just leads to vomiting and extreme discomfort. (I feel sick just thinking about it!)

As I stated above, thankfully this too shall pass. 

For now, I have an amazingly strong and supportive family, a mind-blowing Oncology Team of doctors and favorite nurses, and faith in a God that never leaves my side.

Many people assume cancer-fighters would have reason to pull away from God. Yet the ones I have talked with all seem to have drawn closer to Him. When your only life-line is the One who entrusted you with such a disease, what else can you do but trust Him? He holds the the true hope and reason for our very existence. (If you want to know what this hope looks like- read my other post here!)

Though I may never understand the reason God gave this cancer to myself, fellow-cancer fighting friends, and those I don't even know- may never be revealed here on earth. However, I cannot imagine how much sweeter Heaven will be when we all reach our final destination . . . cancer-free, worry-free, and completely healed.

Thank you all for your constant prayers. I know that so many of you are upholding us through this journey. You are an incredible blessing!

(Meet the newest addition to our Crew! This is "Lego." He is my seven week old yellow lab that shows true potential as my cancer therapy pup. He could not have come at a better time.)

Tuesday, December 22, 2015

Lessons of Love from Cancer

I am so thankful to have a family that has loved, supported, and carried me these past eight months! Below is a guest post by Mom. Her words reflect our lessons we have learned from cancer. Enjoy! 

Dearest members of Caleb's Crew,

As we reflect on this past year of 2015, it has been the worst year of our lives- and yet the most life-changing. God has taught us many sacred lessons, that could only be learned in this dark valley. 

First of all, we have learned that we are never alone. In the most terrifying moments, God is there. When you are in the "cannot-breathe" moments, God will make Himself known. He shows up in such unexpected ways. The words of a hymn will come to mind, 
"Every joy or trial fallen from above- Traced upon our dial by the Son of love. We may trust Him fully all for us to do. They who trust him wholly, find him wholly true."
The words of a friend, a smile from a stranger, a letter in the mail- are all gifts. As you pray for us, there is a sense of relief. Like we can exhale deeply. Your prayers breathe life back into us.
One of my favorite memories from this past year is when one of Caleb's resident doctors came and prayed with us before Caleb's first chemotherapy treatment. One of our greatest fears was met with the faith of a friend. God's confirmations are all around us.

Secondly, we are learning to be thankful for every moment of breath we have. Every day, hour, minute, second . . . is a gift. That is why it is called the "present". (Not very original, but I loved it) Treasure the precious "snapshots" of life. Be on the lookout for them, they are everywhere. Caleb is leading us in this. He is teaching us how to be thankful by example. Thankfulness changes your perspective. 

Last of all, love looks so different now. It is so beautiful in its unrehearsed, spontaneous in a life-giving way. Did you know that love gives life? It's like water to a dry plant. Children blossom under the care of love, we as adults flourish and grow. Unconditional love has no motive except the best for the other person. Love dies to itself to help others. In our darkest moments, love shines so bright- it is breath-taking. There are no politics in love- it cannot be silent or neutral. Love has to act, to bridge gaps. You have to smile when love shows up in a spontaneous meal, or a Starbucks gift card, or Caleb making us laugh so hard that we are crying and begging him not to say another word . . . which he of course does. :) 

And that is what brings me to all of you. You have shown us “what love looks like”. You have carried our heartaches as your own. You have given and sacrificed to bring the relief we have been comforted by. Many have given out of your own need, you have prayed for Caleb as if he was your own child. You have showered us with love. Our children’s faith in God has been strengthened- because of you. We will be forever indebted to each of you. You have taught us that in our darkest moments, love will show up.

Merry Christmas, Caleb’s Crew!

It is an honor and privilege to be on this journey with each of you.


(My incredible parents, Scott and Tina)

Tuesday, December 15, 2015

Candid Cancer Conversation with Caleb

As I sit and reflect on the recent happenings since my last blog, I can't help being overwhelmed by the darkness of cancer. As many of you have been following my story, you may remember a post this past summer, "Dealing in Death." Back in June I was facing the realities of what this cancer is capable of doing. Now I have experienced those realities on a more personal level. 

Since June, I have lost six fellow Ewing's fighters that I followed and with whom I communicated. Though I may not have known them personally, I travelled their journey from afar. Connected to each other through our similar cancer, I grew to love and pray for them. Now they are gone. So what does this mean? Why even mention this?

Cancer is more than just chemotherapy, radiation, and surgery. Cancer extends beyond the physical. 

I find myself in a difficult position. Part of me wants to explode with excitement as I finally see the tiny light at the end of my "treatment tunnel." Yet the overshadowing realities of what still lies ahead continue to bear down on my spirits.

I don't know if I can easily explain this, but it's like a roller-coaster. One moment you are riding high with the excitement of normal life in view, and the next moment you are crushed with the pain and suffering of both your fellow cancer fighters and yourself. The ability to process the pain of so many difficulties seems out of reach.

Although my doctors have cut two entire months off of treatment, I struggle with the realities that at very best my cancer has an extremely good chance of returning. I see a glimpse of normality ahead, yet still must process the fact that as I sit typing one of my favorite Ewing's Sarcoma fighters lays in the ICU as her cancer continues to spread. (Link to follow her story and pray)

Maybe I'm rambling. Maybe this doesn't make a lot of sense to you. However, in the past few weeks I have had to process others' comments about my cancer and this is sort of my response. 

So in conclusion, here's the ending to my rather blunt and straight-forward post.

I write this blog so you can truly see what cancer is like. All of the raw and real posts are to display the true realities of life with Stage 4 bone cancer. If these bother you, please stop reading. I don't want to offend or hurt anyone. However, I'm not going to beat around the bush when it comes to my cancer.

As for a brief update, my scans have continued to show that the cancer in my shoulder is dying. Because of the tumor's large size, we have decided on an alternate route to surgical removal. The "Tumor Board" decided that we will not do a de-bulking surgery, but rather leave my tumor in my shoulder where it now acts as a joint between my arm and shoulder blade. Though this may seem like a free home for the cancer to return, my oncologist said that if the cancer is going to return, it will do so whether there is a tumor or not. 

Please pray for me as my upcoming Stem Cell Transplant will take place some time in February or March. The procedure will be rather difficult, but very necessary! ;) 

Also pray most of all that the cancer stays in remission for the full five years. Due to the very aggressive treatment, once you finish there isn't much more your body can handle. The true fight with Ewing's begins once my body is in remission. The statistics for staying cancer free are rather depressing. Once  I finally finish my chemotherapy, the true battle to be cancer-free will begin. 

I've been fighting this terrible beast for 9 months now. Thanks to your constant prayers and support I am happy to say that there is no chance of me quitting! (Never was optional) 

Love to all! Have a blessed Christmas with your families. Cherish every moment!

(Hannah and I after our Chemotherapy/EchoCardiogram visit)

Sunday, November 22, 2015

Just Imagine

When I stop and listen to all of the questions and concerns asked about my cancer, I have to wonder how much everyone really knows about cancer. Obviously, there are millions of people directly in contact with cancer fighters across the world. My goal through this blog is to share some of my journey- my interaction with this nightmarish disease. 

Today I'd like to take your mind on a tour. I know that there are thousands of readers spread out across the planet- so a real-life tour is a bit far fetched! ;) On this tour, you will have to dig deep in your busy mind and just imagine. 

Imagine if you had cancer. Imagine if all normality in your life immediately ceased and a new lifestyle was forced upon you. Imagine if your life goals were paused and your dreams stripped away. Imagine the amount of grief that is quickly instilled on all those that know you- the pain of possibly of losing you. Imagine if everyone you love and care for tries helplessly to aid you on your new journey.

(Sleep- the one escape from the onslaught of nausea)

Imagine if you had to start treatment: unknowns from every angle. Imagine the fear of subjecting your body to hazardous drugs that are now your lifeline. Imagine traveling to the hospital, knowing that for days your body will continually be fighting not only cancer but also the life-saving drugs. Imagine laying in a hospital for an entire week with constant waves of sickness flooding your body. Imagine being so sick to the point that knocking yourself out is the best option. Imagine the heaviness of these treatments for months on end. 

Imagine yearning for normality: a simple breath of relief. Imagine the waves of sadness as you watch your fellow cancer fighters fall victim to their disease. Imagine the weight of death that is present in every day. Imagine being submerged in a world with the statistical odds always stacked against you. Imagine your future looking so bright, yet so clouded by uncertainty. 

(P4's Tree of hope for all the cancer fighting heros!)

Imagine life and family being all you fight for. Where every day is a battle against your body and mind. Imagine watching the world go on while you fight a battle so few can truly understand. 

Though many try, few can truly grasp the enormity of cancer. Those who fight this battle realize that the most precious thing in life is not made of a certain material, but rather is the time we are given.

It seems that the greatest gift one could truly give is acknowledging that you cannot truly grasp where a cancer-fighter is. Knowing that it's not about saying the perfect words, but rather investing the gift that God only gives- our time together.

Throughout this holiday season, I am looking forward to making that investment - our time together. Though the past is constructed of happy memories, I find it important that we create only happier memories now. In all honesty, none of us are guaranteed a tomorrow! The smartest investment we can make is in each other.

Try and give the gift of being together! That is one gift that you can't mess up. :) 

(Rolling with the family, getting out of the house is an incredible break from the monotony of treatment!)