Day One at CTCA

Let me start by saying that it has been a busy day and I’m feeling very optimistic overall! I had 8 appointments today and will have a total of 19 appointments over 3 days. From the moment we walked into the Cancer Treatment Centers of America we felt a positive energy and a level of professionalism and care that was impressive. I walked towards the desk upon walking into the facility and a gentlemen (Tim) asked if it was my first time at CTCA, and when I said, "yes," he asked if I was Denise. He was waiting for us! He explained the origins of CTCA and gave us a quick tour before my first appointment. It feels more like a boutique mall than it does a cancer center and hospital.

I have to laugh because they took my height and weight and I have always thought that I am 5’8” tall and they said I’ve been wrong all this time. I’m 5’10”! How funny is that? My first thought was about my BMI - and when the doctor stepped out of the room I checked my BMI with my new height calculation and it puts me in the healthy range! Bonus! 😃

My main questions were:

1. What form of sarcoma do I have? 
2. Will I need radiation?
3. Will I need chemo?
4. When can we schedule surgery? 

The answers I received today:

1. Sarcoma type? We won’t know what form of sarcoma it is until we get the pathology report after the tumor has been removed. 
2. Radiation? Some people need radiation prior to surgery to shrink the tumor. I don’t need radiation prior to surgery, and I may not need it at all, but we won’t know for sure until after we have the pathology report back. I’m hopeful I won’t need any radiation!
3. Chemo? Probably not! 
4. Surgery? Has been scheduled for Monday, July 30th! 

I am so excited that we can get surgery scheduled for Monday! We met with the surgeon this afternoon and he said he believes the surgery will take about 3 hours. It's going to be a little more complex than I'd envisioned it to be. The tumor is located in my vastus intermedialis muscle and he said they'll have to take the entire muscle. The widest part of the tumor is 3 centimeters but there is more area inflamed which makes it about 9 centimeters so they'll take the entire area. It's also located up against my femur so he said he will scrape the periosteum off of the femur to ensure it doesn't spread into the bone. He said that part of the surgery will increase my pain quite a bit but they'll do what they can to manage my pain.  I'll be hospitalized a day or two. I'll have drainage tubes for 3-4 days and I'll have to stay in Phoenix a week or two after the surgery. I'll be fitted for a compression legging in the next couple of days and elevate my leg for quite some time following surgery. I'll start physical therapy in Phoenix and continue it when I return to Boise.




The surgeon said the other muscles in my thigh (quad muscles minus one) will take over to compensate for the removal of the vastus intermedialis muscle. I will not need crutches and I will be able to walk stairs - both were concerns of mine. He did say that I won't be able to run in the Onward Shay half-marathon on October 28th. I already knew that would not be possible. I asked if I could walk the 5k that day and he said he wasn't sure but it seemed like it may not be possible. My aunt and uncle said they'll come to Boise to walk it with me if I can give it a shot. I shared with the surgeon that I'm a little Type A. My uncle said I'm "Type A+++." The surgeon did say that I'll be able to run a half-marathon in the future. That made me happy! I now have a personal goal to also run a full marathon!


I'm thrilled that I won't need chemo! It was grueling when I was battling triple-negative breast cancer (TNBC). I had significant "chemo brain" and I didn't want to face that again. I also started growing my hair out when I hit the five year cancer-free mark and I have grown fond of it! Of course, if something changes and they indicate it's needed, I would do it, but I hope that their current assessment is correct and that chemo won't be needed. Same with radiation. I hope it's not needed.


They did say that I've had two rare forms of cancer and I'm always going to have to be diligent - especially since I'm BRCA2+. I can deal with that. The first doctor we met with indicated that I'm a very lucky woman. He reviewed all of my medical history for the first cancer diagnosis and treatment. One thing that gave me pause is that the tumor I found wasn't really a tumor at all, it was a "lymph node of metastatic carcinoma." And I had three other lymph nodes that were positive. But, and this is the part that gets me, the original source was never found. I recall wondering seven years ago where the original tumor was located. He indicated that my body may have rid itself of the original tumor. No one put it in those terms before. Both doctors today indicated this sarcoma is in no way associated with my first cancer diagnosis.


I'm grateful for the support network I have across the country! I posted a quick update last night on FB and Instagram and the support I received uplifted me and reduced my anxiety quite a bit. As soon as I woke up this morning I had messages from co-workers, friends, and family. Each one is like a hug and a prayer from afar! Thanks to each and every one of you!


My dad sent me messages every 20 minutes while I was at CTCA asking for updates and letting me know he was praying for me. He's with me in spirit! I had my aunt and uncle by my side all day and they'll be with me at each appointment over  the next two days. I'll check out of the hotel on Friday morning and move in with them on Friday afternoon and stay with them after the surgery. They are amazing. They call me "Deanie," a childhood nickname that I adore. We  don't know where it originated - but I love it. I am also known as "DC." My sister is "AC." Together we make AC/DC. It's a nickname we received as children by our neighbors (the O'Brien's). It was said we were like two little batteries of non-stop energy. And, on Monday, I received a message from a high school friend who referred to me as "Danger Mouse". I'd forgotten about that nickname. I laughed out loud when I got that message. Danger Mouse was a cartoon we watched in high school. Those are a few little factoids you may not have known about me!


I feel like a weight has been lifted today. I went into today a little anxious, but in "badass mode," ready for the fight! I don't have all of the answers but I do have a good feeling about where things stand right now.


Again, thanks for the support and hugs to everyone! Let's keep up the positive thoughts and prayers - they're working!

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.





 

Diagnosed with Sarcoma

Photo of ultrasound.

I was diagnosed with cancer for the second time in my life on July 7, 2018. I have a sarcoma in my left leg. It is 7 years and two days after my triple-negative breast cancer diagnosis.

I found a mass in my left thigh on June 16th. I have been training for a half-marathon and danced my butt off at a MarchFourth concert on June 15th so my legs were sore an in need of massage. It seemed pretty large to me. I immediately sent my sis a text message with an expletive. On Monday I called my primary care provider to schedule an appointment. During the appointment, she agreed the mass is deep in my leg, and is 2 or 3 centimeters. She ordered an ultrasound. That was done on June 20th. An MRI done on June 26th. I think the report indicated the tumor is in my vastus medialis muscle. They couldn’t tell whether it was or was not cancer so an ultrasound-guided biopsy was ordered for July 2nd.

As I've gone through the various diagnostic tests my coping skills to deal with the stress has been to hike in the mountains or go running. I can't sit still! There's nothing better than being in nature to try to make sense of what's going on and process the possibilities. I hiked Cervidae Peak and Around the Mountain at Bogus Basin for the first time while I was going through the testing process. I think this is a better option than curling up in a ball with the covers over my head. On that note, I am NOT sleeping well at all. For some reason, I now wake up at 4:00AM every day. Stress-related insomnia. It's not fun. 😩 (Note: Emoji options didn't exist when I blogged about my TNBC diagnosis. This is a fun development! Gotta find the good in everything!)

I received a call from the PA on July 7th. She said the words “low grade” and “spindle cell” and indicated myxomas were typically benign so the words she used were confusing to me. Low grade is a term associated with cancer. She also said she was referring me to my oncology because “we need to get it the hell out as soon as possible.” As soon as we hung up I Googled “spindle cell” and spindle cell sarcoma was the first thing that appeared in the results. My heart dropped. I suspected it was a sarcoma and this news confirmed my suspicion. I was with my daughter, Olivia, at the time and we’d planned on walking on the Greenbelt so I quickly sent a text to my family that it wasn’t looking good, and went on a walk with Olivia.

 I received a call from the cancer center on my way home and they indicated my oncologist was going to be on vacation and the earliest they could get me in was July 31st. I gave it some thought and knew that it would be a major challenge to wait that long so called back and asked if I could see a different oncologist in order get in sooner, and they weren't willing to do that, but they changed the date to July 25th. It is still too long and heightens my anxiety a few notches.

My experience has been that waiting is the worst part of the journey. I want to know what kind of cancer it is, when surgery can be scheduled, what stage the cancer is, and whether I’ll need radiation and/or chemotherapy. During my first battle, learning I had to go through chemo and radiation was hard, but I actually looked forward to those treatments because it was doing something! The goal is always to get the cancer out and kill it in any way possible. It's part of my type A personality, I guess.

After returning home I started doing additional research about sarcomas and spindle cells and I called the medical office and asked for a copy of the pathology report. It said, “low grade myxomatous spindle cell neoplasm”. My heart dropped yet again. I spent hours reviewing case studies, learning about the 50 different forms of sarcomas, and struggled to accept the fact that I had cancer for the second time in my life. It finally started to sink in around 11 o'clock that evening....I have cancer again. It's surreal.

The next day someone suggested I contact the Cancer Treatment Centers of America (CTCA) to ask if they might be able to shed some light on the pathology report and I called them on Sunday, July 9th. A representative called me on Monday morning at 6:30AM MST! By the end of the call I decided that I wanted to go to their Phoenix cancer center for an evaluation and treatment. They indicated that sarcoma is a rare form of cancer (I’d already come to that conclusion) and they have a Sarcoma Team of specialists with experience treating this cancer. They will do genomic testing on the tumor to determine the right course of treatment, albeit radiation and pinpoint exactly what type of chemo will fight the cancer. Those two facts alone were big selling points. They will also pay for my airfare to the cancer center. i have an Aunt and Uncle that live in the Phoenix area so housing could be covered. They contract with two hospitals near the cancer center and while I’m there for the evaluation the lodging will cost $25 and while I’m undergoing treatment it will be $50 per night. I said I could stay with my relatives and they said they like their patients to stay at the hotel so they have time to decompress and relax. CTCA couldn’t get me in any earlier (they did put me on a waiting list) than the Boise St. Al’s cancer center but I’ll be there July 25-27th.

I’ll meet with members of my team on day one, undergo additional testing on day two, and receive my treatment plan on day three. I had a 30 minute call with an oncology nurse on July 11th and we talked about my previous cancer and treatment as well as the new mass in my leg. She said she was adding a surgical consult to my orders. I asked her if she can let the surgeon(s) know that I want the surgery done ASAP and I will stay in Phoenix if they can schedule the surgery the next week. I’m going to pack as if that’s going to happen and I’ll stay in Phoenix if we can make that happen. I want the tumor out and tested!

I also told the nurse I've been training for the Onward Shay half-marathon and that I'm still planning to participate in at least one of the races on October 28th - even if I have to walk the 5K. It's a major personal goal to get this taken care of and take part in that race! The marathon is named after a woman named Shay Hirsh that lost her battle with multiple myeloma, a form of blood cancer. She battled it valiantly for 11 years. I want to honor her memory by doing that race.

I am feeling confident that I found the mass early and all will go well. My new mantra is "I'm a badass and I'll kick cancer's ass again." I'm creating a Kick Sarcoma's Ass Playlist  - if anyone has recommendations for the playlist let me know!

I've got this!