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!

Post-op Update

It has been 11 days since my double mastectomy.  It seems like a year.  I am still in pain and groggy.  I have to sleep hours a day as my body tries to heal.

The morning of the surgery, Michael and I went to the University of Utah to check in at 9:30 a.m. My Dad and Ellen met us there as well as Michael's sister, Maureen. Maureen is stationed in Germany for the Air Force and had planned to come to Pocatello for Christmas. She happened to come into the SLC airport at a time that coincided with the surgery so I was able to see her before surgery, which meant a lot to me.

In pre-op a nurse walking by our room saw so many camera flashes he walked by twice to make sure there wasn't a VIP in the room. I said, "I'm not a VIP, it's my Dad taking pictures." I told the kids this story later and they said, to your Dad, you are a VIP.

The anesthesiologist came in to say hello and ask about previous surgeries and the surgeon came in. I introduced him to the members of my family. Dr. N is a very pleasant man. I appreciate it that he's talked to me personally on the phone after he spoke with the tumor board and that they all agreed surgery was required for my "elusive cancer." They allowed me a chance to say goodbye to my family, which went by so quickly, and then whisked me away to the surgery room.

I remember the oxygen mask over my face and Dr. O, the anesthesiologist, telling me to breathe deeply and then he told me they were going to give me medication to put me to sleep for the surgery. I remember waking up in post-op. I was in a lot of pain. I cried. I knew my breasts were gone. I cannot say my pain, or my loss, were the reason for the tears.

Once I was more stable, I was moved from the University of Utah to the Huntsman Cancer Institute. Mark A., it was my first ambulance ride! I told the crew that and asked if we could make an adjustment and I could be transported in the helicopter instead. At least my humor was still intact! Upon arrival at my room, my nurse and the EMT crew said there was no bed in the room. Then, they took me to another room, and that room didn't have the appropriate electrical outlets, so we were off to look for a room for me. I could hear Michael, my Dad, and Ellie around us as we tried to fine a spot for me.

Finally, tucked in my spot, I could relax. As much as you can in a hospital. I met the night nurses. They checked the two drain tubes in my chest, set up a PCA pump that I could hit every 10 minutes, or longer if I could wait. They asked if they could look at my dressings. In my research of mastectomies, I saw women after surgery and their chests were very tightly bound with dressings, so I said yes, expecting to see the same dressings they had. I had something completely different. I had two gauze strips and I could actually see the incisions on my chest. I'd informed the surgeon and team I'm allergic to steri-strips and have had issues with stitches in the past, so they used a special glue to close the incisions. The nurses said the incisions look very good. I wasn't so sure about it. To me, the left side is very concave almost as if he'd done a radical mastectomy, and on the right side it is very puckered and doesn't look good at all. Some areas are very swollen and will even out and smooth out, according to the nurses.

After this, my pain was not controlled with the PCA pump. It actually took us days to get the right combination for me to get my pain controlled. I spent three nights in the hospital. Every member of the staff at the Huntsman was very good to me and my family. I had a gorgeous view of the city from my room.

During my stay I had visits from three friends I went to Highland High School with. Lynn Kilpatrick, Penny Tippets Coleman, and Mike Taylor. It brings tears to my eyes now, tears of love and thankfulness. It amazes me friendships we started 25 years ago are still strong. I had a beautiful view of Salt Lake City from my room.

I was discharged in time to be home for Christmas. My entire family came to our house on Christmas and it was AMAZING. I am so blessed to have a supportive and loving family. I was so excited to watch the Packers play the Bears, but I couldn't stay awake. Conor kept waking me up to make sure I was okay, but I think he also wanted someone to watch the game with him.  He'd gotten me an Aaron Rodgers jersey for Christmas and I was to tired to stay awake for the game.

I had to go back to the Hunstman on December 28th to have the drain tubes removed. It hurt having them taken out, but it's great to have them out. I always had to drain them myself because Michael didn't have the stomach for it.  I threw up a few times at the hospital and even since we've been home I've thrown up a few times. When we got home from the trip to Utah on the 28th, I was a little tired and my depth perception was off, and I fell down our stairs to the basement, not once, but twice. I have to have help going up and down the stair down. And, Michael has to help me in and out of bed.

 I go back to see Dr. N next week to find out the path reports and have him take a look at the incisions. Next week I also need to contact the Portneuf Cancer Center and let them know the surgery has been done, so they can get me onto the schedule to start radiation, probably in 2 weeks or a little longer.

So, on this final day of 2011, I want to talk about resolutions. It is my MAIN New Year's Resolution to be CANCER FREE in 2012! I still have to undergo radiation, a hysterectomy, and reconstruction. After that it's my goal to regain better health, mentally and physically. I want to start slow, with walking, then move to running (5k with Pam and anyone else who wants to join us). I can't wait to start hiking up City Creek and doing yoga again. Enjoying the outdoors again.

 I will enjoy more time with my family and friends. I'll become a grandmother in 2012. Conor and Bonnie are expecting in June. A new little life for our family will be good. I will become a better cook and eat a more wholesome diet. I've received several cancer-fighting cookbooks and I fully intend to use them.  Fighting cancer is a full-time job in itself but I want to go back to my favorite full-time job - public health.

Happy New Year's to all of you! I feel like this coming year is going to be better for me and it's my hope it will be GREAT for all of us.  Remain positive.  Be Happy. Be Joyful.