Wednesday, July 17, 2013

Update

It has been a long and trying couple of weeks here at the Lily Pad.  It started with the death of my grandmother last week, who at 94 was a wonderful source of strength and comfort for me.  She was close to my children, an integral part of our family and we are already feeling the void left by her departure.  We decided to have her wake and funeral at the end of this week because Monday and Tuesday I was already scheduled for my first set of scans since beginning treatment for lymphoma. There was also lab work, doctors appointments and chemotherapy which couldn't be rescheduled. For at least a day following the PET scan I was not to be around small children because of all the radioactive material in my body which could potentially cause harm, so Jim brought the four younger kids down to my in-laws where they would stay for most of the week.  Jameson stayed home to attend a Video Production and Animation camp and I was so glad to have had at least one of my kiddos with me this week. For the PET scan I was to have nothing to eat or drink after dinner on Sunday.  I tossed and turned all night worrying about the tests and realizing the implications of the results. The fast was to continue until after the scan which was scheduled for 1:30 Monday afternoon. Shortly before we headed into the city we got a call saying that the PET machine went down, that they had an engineer working on it and hoped to have it up and running by the next day.  I was rescheduled for 8:00 Tuesday morning before my full day of appointments and chemo.  I was able to eat and drink again until dinner time when the fasting was to begin again.  Jim, Jameson and I went out to an early dinner and then to a movie, "The Way, Way Back" which proved to be the perfect distraction. Again that night I was up worrying and slept very little, if at all. The scan on Tuesday was a go. I had an IV placed then laid in a hospital bed while a machine injected me with the radioactive material. I was then instructed to lie still and let the tracer work its way through my body.  The scan itself which takes place in a machine similar to CT or MRI machine, seemed to take forever. I prayed the entire time and thought of my family, and my children's sweet faces and tried to hear their little voices. I prayed for the disease to be gone from my body and for a clean scan.

I fully expected a negative scan and my doctors had hoped and expected this as well. After 3 ABVD cycles this is the norm and around 90% of Hodgkins patients reach that by this point. A negative scan at the halfway point is the greatest predictor of a favorable long term outcome, however an additional 3 cycles of chemo would have still been necessary to clean up any lingering cancerous cells. The good news was my scan showed significantly less size, mass and avidity of the cancer. The bad news was there was still evidence of the disease. It was not the clean scan I was hoping for, praying for and expecting and for this I was devastated. I just wanted the cancer to be gone, out of my body. I wondered why my cancer was more stubborn and hadn't cooperated or responded fully as it should. I wondered if I had done something wrong, had I been doing too much, not enough, not drinking enough green smoothies, too much exercise, too little? There was also some inflammation revealed in my lungs and armpit which they were concerned about. It could have been due to an infection, it could have been due to the pulmonary toxicity of the Bleomycin which can cause fibrosis or worse case, it could have been new growth.  My Oncologist was away on vacation so it was my Nurse Practitioner who had the responsibility of relaying this news to me and the rest of my team (husband, mother, father and sister).  While she was optimistic about the general direction of the cancer and pleased with the response in terms of shrinkage she also said that there was no denying the results of many studies and recognized how anxiety inducing this new information was. It would likely mean a longer course of chemo than planned and perhaps pulling the Bleomycin out of my chemotherapy cocktail, if it was the source of the inflammation and responsible for my new cough. She explained they were still waiting on the final read from the radiologist and she would talk to my doctor and give me his thoughts as well.  From there it was time for my chemotherapy session. Jim, My father and sister headed back to work but one of my best friends, Emily, came to keep my mom and me company and it was a great relief to have her there.
My chemotherapy session wasn't with out its own complications. At one point as my nurse was injecting one of the drugs and it began leaking onto the blanket. Three other nurses in hazmat suits immediate rushed in to clear out the contaminated bedding; a poignant reminder of just how toxic and potent these drugs which are entering into my bloodstream really are.  

I returned home feeling defeated with the results and still in disbelief that the cancer was still inside me. I missed my babies and just wanted to lie in bed and cry. I made the mistake of going on-line to conduct my own research, something I will Never do again, and became more worried and anxiety stricken. I forwarded articles to my team in order to share my burden and was near my breaking point. My Ya-Yas (best friends from college) could sense my anxiety through a series of texts and immediately conference-called me and I am so thankful they did. They were able to talk me out of my panic, crying with me, consulting their own medical text books, praying with me and reminding me that this is a marathon not a sprint and to focus on the fact that the chemo is working, not exactly as quickly as we had all hoped but is working nonetheless.  I got off the phone feeling more hopeful, and was happy when Jameson and Jim brought me up dinner and we all enjoyed a delicious meal which had been dropped off (Thanks Megan)! Jameson then made us all mocha almond ice-cream frappes and we all layed in my bed, snuggled close as we watched the All-Star game. I received a text from my friend Brigid which read, "Go to sleep in peace, my friend, God is wide awake." I gave my problems over to Him and went off to sleep.
 I woke today with the promise of a new day, more determined than ever to defeat this disease and rid it from my body. My nurse practitioner called with some reassuring news that they had a CT expert radiologist review my scans and he felt that the inflammation is from post-operative damage and not new growth which is good news. She said that she hasn't talked to my Oncologist about any other patient since he left for vacation but they had already had 6 conversations about me because they wanted to be able to give me the most reassurance possible. I am thankful for the thorough attentiveness of my doctors and nurses.

I received this Prayer in the form of an email from my friend Megan ( an inspirational cancer survivor herself) and it couldn't have come at a better time:


Preparing for
the Promise
TODAY’S SCRIPTURE
“LORD, You have heard the desire of the humble; You will prepare their heart; You will cause Your ear to hear.”
(Psalm 10:17, NKJV)

TODAY’S WORD from Joel and Victoria
In the scripture, it says that God didn’t lead the Israelites by the shortest route to the Promised Land; He took them the long way on purpose because they were not prepared for war. God knew that if He would have taken them into the land too quickly, they would have been easily defeated. Their enemies were much bigger and much more experienced. I’m sure they prayed many times, “God, we’re uncomfortable out here in the desert. We’re hot. We’re tired. Where’s our Promised Land?”
But God didn’t answer that prayer, not because He was trying to make their lives miserable, but because He knew what was up in front of them. He had to prepare them to step into the fullness of their destiny.
In the same way, God has already laid out the plan for your life. He knows exactly what you need and when you need it. If you are in a difficult situation that’s taking longer than you had hoped, know that God is preparing you. He is strengthening you. Stay in faith and keep praising Him as you move forward into the Promised Land He has for you!
Perhaps my journey to the Promise Land, where I will be cancer-free will take longer than planned, but I will be better and stronger because of it.


8 comments:

  1. Beautifully written mands. Your Promised Land is cancer free and not too far away. You are doing so awesome kicking C's butt--keep doing what you are doing. Love you!

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  2. That is a gorgeous prayer, and I love the text your friend sent as well. "Give it to God" has long been a chant of mine when I'm faced with something that seems to be too much. I'm so glad that the inflammation seems to be a byproduct of treatment (albeit an unpleasant one). Sending love to you as always and steadfastly praying.

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  3. Keeping you and your beautiful family in my prayers! You are an true warrior woman, and an inspiration to us all! Thank you for sharing your journey with us! Stay strong!!!

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    1. Love this, Nina! So very well said! Love and prayers, Amanda!

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  4. I will keep sending prayers your way, Amanda!

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  5. Thank You Everyone! I appreciate the kind words and prayers! xoxo

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  6. I'm a good friend of Kellys and found you through her prayer request blog post. Just wanted you to know I'm praying for you! And while we do not know why your road looks different than you were hoping, we do know there is purpose in it and that He loves you and is near to you in this difficult time. Praying healing for you!

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  7. I found your blog thru Kelly's I hate cancer post. My husband has just started chemo for Hodgkin's and I wanted to say I will be praying for you and your family. God Bless You!
    Beth

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