Saturday, August 30, 2014

New York Trial Treatment #1

So I originally wrote this post while flying home yesterday, but for some reason it didn't save, so I'll have to remember as much as I can!

The first thing I want to say is....


Thank you to Brad and Julie Raby for being such amazing friends to us. Not only did they help tremendously with David's birthday party last weekend (BTW my husband is 30!!! Wow!!!) Not only do they watch our dogs for us whenever we travel. Not only are they super fun and supportive friends. But now they have set up a website for me and my cancer journey at You can get updates, access this blog, and donate money to help us with the financial burden of traveling to New York every two weeks over the next two years. Thank you Brad and Julie!

Now I want to say a big...


To all of you that have donated money. I can't tell you how truly humbled I am that so many people would be so generous. We have almost reached our goal of $10,000 in just one week. It blows my mind!!! You all are amazing!

And now for an update...

This week I traveled to New York to receive my first treatment on this Immunotherapy trial. I wasn't anticipating a lot of side effects because this is not chemo, but I did face a lot of anxiety. There are always unknowns when you put a new drug in your system, and seeing the infusion rooms and IV bags brought up a lot of emotions in me that I wasn't expecting. Almost exactly a year ago on David's birthday, we heard the word "remission" and thought this cancer journey was on its way to being over. Almost a year ago is when I got what I hoped would be my last chemo treatment ever for my transplant. Starting a brand new treatment that could last for two years is overwhelming.

But I got over it and began the first infusion...and then I started sneezing. I can't make this up people. For some reason, my body reacted to this drug by sneezing uncontrollably. The nurses were all laughing about it and we continued the infusion, sneezes and all. When the infusion stopped, the sneezes stopped.

Then we did the second infusion and it went fine...until we left the clinic. Then I had intense lower back pain and the chills. Apparently this is what my body decided to do with the second drug. Some Tylenol and a nap later and I was fine, and I feel great now!

Please pray that these reactions don't continue and more importantly that this medicine WORKS!! I believe that this treatment could be what the Lord uses to heal me and I won't let go of that.

Also please pray for strength for me as we continue. Traveling to and from New York is going to be a challenge. Once again cancer is taking over my life and stopping me from fulfilling the dreams in my heart. The traveling is already starting to wear on me and we have just begun!

This was my week.

Drive 2.5 hours to Nashville
Wake up at 4:30 and drive to the airport
Fly to the New York
Take a bus to the Subway station
Take the subway to the city
Get treatment and stay two nights in New York
Take the subway to the bus station
Take the bus to the airport
Fly to Nashville
Drive 2.5 hours to Knoxville

Phew! I have to do this every week for the first month and then in the long term we will go every two weeks. The schedule is very specific as we go through different phases of the trial, so I will keep everyone posted.

Thank you for your prayers and support. It's so hard to keep going sometimes and keep a positive attitude. Please help me still believe that God is for me and has good things for my life and wants to see my dreams come true.

Thursday, August 21, 2014

To be a burden

So I haven't updated the blog in a long time for a few reasons.

1. Things have been up in the air for a while now. Watching and waiting for 6 months has been a nice break from treatment, but when you get to this point of cancer, you truly don't know what's coming next.

2. It's been an emotional roller coaster and I haven't wanted to make myself vulnerable all the time.

So here's the scoop. After radiation there was a very small spot that showed up in my abdomen proving that yet again, the treatments we tried just were no match for this ridiculous cancer. At that point we went to Memorial Sloan Kettering in New York to see one of the top Lymphoma specialists in the world. He said it was too small to do anything about and we needed to wait for it to grow large enough to biopsy. The next scan showed that it had grown and spread, but it was still too small.

While we were on vacation in New Jersey, we hopped on a train and headed over to New York for another scan. At this point it had grown large enough and our doctor recommended a trial for a new drug. We had a month to complete a biopsy, bone marrow biopsy, pulmonary function test, and bloodwork and were to come back last week and start the trial.

A week before we were set to come back and had completed all of the arduous tests, we get an email from our trial nurse that I had been disqualified from the trial due to the order in which I had received some of my treatment over the past two years. It was something they overlooked. They thought I could get into another similar trial though and said to come to New York anyways.

The scans and tests that I had done have expiration dates for trials so we knew time wasn't on our side. We got to NYC last Monday and saw a new doctor and heard about a new trial. This one combines the previous drug with another one. It's immunotherapy and had been very successful with other cancers. Basically they take down the defense system of the tumors and then amp up my immune system so it will learn how to kill the cancer. We were excited about this, the only catch was that my scan was expiring a day before we could start the drug.

We scheduled a new scan and extended our trip to Friday and planned to start the trial on Thursday. The only thing we were waiting on was my biopsy results from Vanderbilt. They were supposed to come in the next day.

While we are waiting for the scan, the clinic calls us and says they recieved results from Vanderbilt but they were for a fine needle aspiration biopsy, not a core biopsy which is what they needed. We knew I had had a core biopsy done so we were very confused. My amazing husband fought for several hours calling back and forth between New York and Vanderbilt. It just didn't make sense. Why were they withholding the correct results?

We could not get the core biopsy results so we had to change plans once again. We had to schedule a new biopsy in New York and push back starting the trial until after that was done. They could not schedule me until this week, so we had to go home and plan another trip for the very next week.
We got a phone call later from Vanderbilt, and it turns out they did do a core biopsy but they performed the wrong test on it and it became unusable. It was their mistake.

So here I sit in a hotel room in New York about to go get another horrendous biopsy done. I'm set to come back next Wednesday and begin the trial that will require many, many flights to New York and time away from my family.

I don't know what to think after this roller coaster. I'm trying so hard to hold firm to the truth in God's word but I'll be honest, it is difficult!

I want to live. I want to have babies. I want to do ministry. I am SO TIRED of fighting this disease. More than that, I am SO TIRED of being a burden.

I am a burden on my husband, my family, my friends, my church family, and anyone who hears my story and feels sorry for me. I hate being a burden! I hate knowing that this stupid thing that I can't control is causing pain and heartache to the people that love me.

Every scan, every treatment makes me so vulnerable. And every time it fails, I fail. I can't help but think that if my faith was stronger somehow. If I was worthy of God's favor somehow. Then He would save me!

I know I can't earn God's grace or mercy. I know I don't deserve healing and can't do the right things to earn it somewhow. I know I can't manufacture faith. But then why are these things being withheld from me when I ask for them...when my husband asks for them...when my friends and family ask for them....

It is such a frustrating and confusing thing, however....

I will continue to praise the Lord for His ability to heal, even if He chooses not to heal me.
I will continue to praise the Lord for His mercy, even if He chooses to withhold it from me.
I will continue to praise the Lord for working all things together for good, even though I can't see that happening in my life right now.
I will watch my friends have children and accomplish goals and live out their dreams and rejoice with them, even though I'm stuck in this awful place with dreams crushed.

I will do these things because I have seen God do many mighty things. I have seen him provide and heal and speak to His children. I know there's still hope, even if it doesn't happen for me.

I'm tired of being a burden. I'm frustrated and confused. But I know the Lord is the carrier of all burdens and I pray that those around me can turn to Him.

"Come to me all of you who are weary and burdened, and I will give you rest."