Thursday, February 11, 2016

Texas, Transplant, and Foreseen Triumph

(Enjoying the beating the Broncos gave the Panthers)

First off, for those that did not know- I just returned from an amazing trip to Texas! My friends, (pretty much like family now) the Tindells flew me down to Texas for a Super Bowl Party. My Ewing's Sarcoma Hero, Sarah Tindell, passed away this past December. She was my cancer coach and although we never met, we developed a special friendship through our common bond of cancer. Sarah's favorite NFL team was the Denver Broncos. She was diagnosed close to two weeks after the last Bronco's Super Bowl appearance in 2014. The fact that the Broncos made it to Super Bowl 50 made it so much more special when they went on to win. Sarah was truly the MVP, they just didn't know it. A special thank you to the Tindell Family for having me and for making the trip to Texas so awesome! :) 

Scans are complete, Consent / Consult meeting is done, and Transplant starts in six days.

To say I am nervous is an under-statement. As of my last blogpost, I was fairly confident that I knew what lay ahead. Last night, I found out that I didn't. Though I could probably write a very lengthy post on all that transplant will entail, I will try to summarize... We'll see how it goes.

First of all, the Stem Cell Transplant is a life-saving procedure to counteract the extremely powerful chemotherapy I will be receiving. (I had no idea about this) Though I truly wish I could reveal the names of the two chemo drugs I will be given, I am afraid I have no idea... I blame this on "Chemo Brain." What I do know is that the main chemo drug will target the Ewing's in a very aggressive manner. It is so aggressive that it will completely destroy my bone marrow, hence the need for transplant. The goal is that through this treatment, any remaining cells that may have not died from the past year of treatment will be destroyed. 

Secondly, the recovery from transplant is very strict and long. For six months post-transplant, I will not be allowed to be in public places such as school, church, or even stores. I will not be allowed to attend parties or social events. I won't be allowed to have direct contact with soil, plants, or lawn mowing - no working for my brother's landscaping business. :( I will have to be indoors with all windows shut. If I want to go outside, it will only be allowed if I am wearing a mask. 

Pretty much, my dreams of returning to work this summer are over, and I will be placed under house arrest. 

Finally, the Transplant is dangerous.
There are common side effects which are fairly treatable... and there are not so common side effects which can be fatal. 

For the common side effects, we are looking at Mucositis, low blood counts, and common chemotherapy side effects. 
Mucositis is caused by the chemotherapy and is seen in the breakdown in the linings of the mouth, throat, esophagus, and digestive tract. Usually these areas will become enflamed, extremely sore, and swollen. Last time I encountered this, my throat was so closed off that I couldn't even swallow my own saliva. In other words, it is extremely uncomfortable. Take Strep Throat and multiply it by 100. Trust me, I've had strep. ;) 
Low blood counts will obviously be treated by transfusions. Seeing I've had over 20 transfusions, there aren't too many concerns there . . .
Some other things they are a little worried about include fevers, infections, blood pressures, and oxygen levels. For most of these side effects, I will have to be admitted to the ICU because of the extreme fragility of my body. Any infection can pose a huge risk. If they cannot get an infection under control, the results are often deadly. I was told even a common cold can kill a transplant patient. Pleasant thoughts . . . 

And now for the deadly side effects! Haha, isn't that just wonderful? 
The first is called HSOS, or Hepatic Sinusoidal Obstructive Syndrome. This side effect occurs to some degree in 50% of transplant patients. In HSOS, the blood vessels in the liver swell and block the blood flow. This results in the liver being unable to remove waste products from the bloodstream. There will be drugs they will administer to counteract this. However, the best treatment is White Cell count recovery. 

They will also be watching for Lung Damage. This can be both mild or severe. In many cases, a patient is put on oxygen or a ventilator to help them breathe. In some cases, lung damage is long-term. 

The final serious side-effect is Cardiomyopathy. Heart damage from this is rare but life threatening. Pretty much, the crazy amounts of aggressive chemo I have already received pose a greater threat to me than the chemo I will be getting. They said if I get this, they will have no idea what drugs did it!

Now I could go into all the "long-term side effects," but I really don't care for them. The list of long-term side effects are so long already after a year of chemo, forty-one rounds of radiation, and now transplant - that I don't even care to know. Lets just say there is a large chance for organ failure, early death, secondary cancer, and many other pleasant problems. In my opinion, I'm taking a chance - but on the other hand at least I have a chance. I'm fighting incredible odds that say I won't be able to beat this. However, if this saves my life- it's all worth it! 

Well, looking back at all my rambling I guess that I didn't really shorten it. Oh well, if you want to skim read - I won't judge.

Transplant is this coming Wednesday. Your prayers would be appreciated. 

Much love!

(Ready to take on Transplant)

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!)