Preparing for Trip to Cancer Treatment Centers of America in Phoenix

It has been a whirlwind of activity and emotions over the last two weeks and I’ve spent the weekend trying to mentally prepare myself for the journey ahead. Literally and figuratively. My suitcase is out and my packing list from the Cancer Treatment Center of America (CTCA) is beside me. I received a packet of information from them late last week and I’ll read it during the flight.

After taking some time away from researching sarcoma I resumed it again last week. It’s a coping mechanism for me. I have to educate myself. In my research, I’ve learned that only 1% of adult cancers are attributed to sarcomas. It's estimated that 15,000 people are diagnosed with sarcoma in the United States each year.

I've learned there is a difference between a carcinoma and sarcoma. According to CTCA’s website, “A carcinoma forms in the skin or tissue cells that line the body’s internal organs, such as the kidneys and liver. A sarcoma grows in the body’s connective tissue cells, which include fat, blood vessels, nerves, bones, muscles, deep skin tissues, and cartilage.” Sarcomas are categorized in two ways: soft tissue sarcoma which forms in tissues and bone sarcoma (osteosarcoma), which develops in bone tissue, cartilage, or bone marrow. My tumor is located in one of my quad muscles so it falls into the soft tissue sarcoma category.


Photo courtesy of the Eric D. Davis Foundation.


I was diagnosed with sarcoma July and it turns out it's Sarcoma Awareness Month. I’m certainly aware of what sarcoma is now. I won’t say that it’s always on my mind - but I do think about it several times a day. There’s hundreds, if not thousands, of medical journal articles about sarcoma and there are new treatment options identified through scientific research. That’s comforting to me.
I truly believe the worst part of being diagnosed with cancer is the WAITING. I am very type A with a major focus on being organized so I’m struggling with not knowing what type of sarcoma I have, what stage it is, and what the treatment will be. I’m not fearful of radiation or chemo - I’ve done it once before and I can do it again. I just need to have a plan of attack. I find a little comfort in knowing I’ll have more answers by the end of this week.

I am anxious about when we can schedule the surgery and what how they will perform the surgery to remove the tumor. I’ve read numerous times that it’s best to have a surgeon with experience removing sarcomas perform the surgery so I’m glad CTCA has a Sarcoma Team. I have a list questions for the team in Phoenix.

1. The tumor size is 2.92 x 1.92 x 2.82 centimeters. My understanding is that they’ll need to perform a wide excision with wide margins. What’s the estimate on how long the scar will be? What’s the overall plan for the surgery? 
2. What can I expect the recovery to be like? 
3. Will I need crutches? 
4. Will I be able to go up & down stairs? I live and work on a second floor so that could be a challenge. 
5. I’m guessing I’ll need physical therapy. How long? 
6. I realize I won’t be able to run the half-marathon on October 28th. Will they agree to let me at least walk or run the 5k that day? Maybe it’s too soon to really know for certain now - but it’s a personal goal!

I'm still hopeful we'll be able to get surgery scheduled the week after next. I've decided to pack as if I'll have surgery and am packing accordingly. The power of positive thinking - right?!

Today I finished reading the book North, by Scott Jurek. In 2015 he journeyed 2,189 miles on the Appalacian Trail (northbound route or NoBo) and set the Fastest Known Time (FTK). It was grueling and punishing the entire forty-six days, eight hours, and seven minutes. He beat the record by three hours and thirteen minutes. He had to DIG DEEP to finish. For me, cancer forces me to dig deep physically, mentally, emotionally, and spiritually, in order to brace for battle. It was quite an inspirational book for me to read. I bought it a few months ago without knowing I had cancer at the time. I'll keep his journey in mind as I start my own. He had an incredible team helping him the entire time. His wife Jenny, several close friends that ran with him during the 2,100+ mile trek, as well as complete strangers, who all supported him and cheered him on.

Similarly, I have a cheering section as well. I told my family members as soon as I found the mass and knew the diagnostic testing was to begin. I told my friends on Facebook a week ago and their support and posts about my diagnosis bolstered my spirits. One person said, "we'll beat this, and yes, I said WE, because we'll be with you along the way." I love that. I do draw strength from my family, friends, and work colleagues.

While I am optimistic and upbeat for the most part, occasionally fear creeps up and asks "what if" it's worse than I'm expecting? It's normal to have some fear. I think I'm doing a fairly good job of noticing it when it appears give it some thought and then move on. I'm keeping it in check.

The two things that are hardest for me right now are waiting - and insomnia. I have had trouble sleeping since the middle of June. I am averaging about 4 hours a night and I'm tired. My oncologist ordered Ambien for me during my battle with breast cancer. I've been using 5-HTP and melatonin to help me sleep but they really aren't helping. I'll talk to the CTCA staff to see what recommendations they have. I know that I need to get this addressed especially as I prep for surgery. No one wants to go into battle tired!

I'll end with a quote I found that I like, "Cancer may have started the fight but I will FINISH IT." -Unknown author. I will finish it - like a badass!!!

Typos and grammatical errors may be within the body of the text above - on account of sleep deprivation.