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!

The Journey Continues...

Yes, it has been years since I sat down and wrote on this blog. But, I've decided it's time to get back on and express a few thoughts here and there. The biggest realization is that being a cancer survivor is wonderful! I cherish EVERY day. It was at this time four years ago (June 17) that I was diagnosed with cancer. By this time I'd had the initial surgery where the doctor could visually tell it was cancer she removed from my breast. I'd also had the axilliary node dissection that found three cancerous lymph nodes. I started chemotherapy on August 2nd. So, the summer time will forever remind me of the benchmarks I made in 2011 as I began this journey.

Now, four years later, I have to say that it's not easy being a survivor. The fight will never be over. I tried to believe that I was "done" and I could move on with my life. In reality, I think of cancer every day. Life before cancer. Life during treatment. And now, life after treatment has concluded, but cancer is still lurking in the background. I see my scars every day - a very blunt reminder that I had to have both breasts removed to save my life. I still hate to look in a mirror...I guess I'll attempt to work through that now that I've realized my cancer journey is not over.

And, right now I'm back to where I was four years ago. I am undergoing tests to determine if the cancer has returned in my sternum. That would mean I have metastatic breast cancer. Stage IV. A terrifying thought.

On July 12th I went for a lovely walk/hike in my neighborhood (I now live in Boise, Idaho, I'll go into that at a later time) and I was so grateful for my life. I looked at the world through a beautiful lens happy to take in the morning fresh air, hearing quail in the distance and hoping to see a little covey of quail toddling across my path, and hiking to Castle Rock. Upon returning home I stretched and started to putter around the house. Suddenly I began to have chest pains. The kind of chest pain that scares you and makes you wonder if you're having the dreaded heart attack that strikes many women. After about 15 minutes I decided it was serious enough that it warranted a trip to one of the local hospitals. Numerous tests and hours later I was in a taxi on my home. No heart attack or blood clot was found. The reason for my chest pain was determined to be costochondritis. It's inflammation in the chest and the best definition I was given is that it's like arthritis in between the sternum and ribs between the cartilage. It is painful. Sharp and stabbing pain.

As I Googled and researched it that evening, unable to sleep because of the pain, I came across several articles about women that had a "costo" diagnosis and breast cancer. Their chest wall was radiated during treatment, just like mine, and then had costo start during their treatment, or years later. This appeared to be the case. Ok, I can handle this. Then, I saw a forum where several women were diagnosed with costochondritis mistakenly. Their cancer had returned in their sternum. Metastatic breast cancer. My pulse quickened. Could this be me as well?

I asked this very question hours later of my new cancer physician. A petite woman who I've come to know in the past 12 months. I had a scare last year and had to have a biopsy. Negative. Now, I explained what happened and the costo diagnosis and my subsequent research. I asked if we should look into this further. She immediately said, "yes, and I'll order a CT scan and a bone scan." Then she looked at my chest and checked for lumps and enlarged lymph nodes, and as she did so she asked me about a red rashy spot on the right side of my chest. I told her it had started itching while I was at the hospital. I was on so many pain meds the nurses had explained it was a side effect from the meds. I thought they were probably right and continued to scratch like crazy. Well, Dr. H said, "Denise, I think that looks like shingles. We need to get a swab of that." I was so shocked! Shingles was one of the furthest things from my mind. But, she was right. The next day I got a call from her nurse and she said the swab tested positive. Anyone that has had chicken pox can later have a flare up of shingles. So, we hypothesized that perhaps the intense chest pain was from shingles and/or costo? I could only hope it was one or both of these combined - and not cancer. Anything but cancer.

Now, a week later, I have the CT and bone scan results. The CT didn't reveal anything. The bone scan did. A small/tiny area on my sternum showed tracer activity. The radiology report was posted on my personalized medical file two days ago. It was one thing to hear Dr. H tell me the news, but to read through it made me fearful. "A small metastatic ossesous lesion or insufficiency fracture occult on CT are not entirely excluded." If symptoms continue follow-up with MRI. Yes, it said small, but all I see is metastatic. Osseous means bone. Cancer in the bone. Dread and fear wrap their arms around me and squeeze.

I try to calm myself. I know positive energy is just as powerful as prayer. Both were important to me as I went through this four years ago. And with each subsequent scare. But this one really has me rattled. I have very good intuition. I knew it was cancer 4 years ago. I had to argue with the surgeon to do the surgery. She and the radiologist thought it was only a cyst. If I had not insisted upon the surgery I would not be here writing on my blog today. Of that I'm certain. So, I can't help but be scared. I have pain in my chest. Significant pain. I have a history of a the most aggressive form of breast cancer. Triple negative breast cancer. And now, a spot on a bone scan with tracer activity on my sternum. In my logic, you put the two together and the result could be a recurrence. The devil's advocate says it could be inflammation from shingles or costochondritis. Actually, it's probably the angelic advocate that's saying it's one or both of those and the devil's advocate hoping for cancer.

I'll have an MRI tomorrow. One day seems like a month when you're waiting to find out if you have cancer again. It's a terrible torture. I do keep myself distracted by cleaning, shopping, and yesterday I had a highly productive day at work. It was fantastic. And, when my thoughts turned to "what if?" I would remind myself about that power of positive thinking and to live in the moment. As I left my office, my internal dialogue was "live in the moment, live in the moment, live in the....what if it's cancer again?" And so...the journey continues.

Surgery Postponed for a Week

Hello family, friends, and followers!

Yes, I met with the surgeon at the Huntsman Cancer Institute on Thursday and he said the bottom line is that he wants to meet with the Huntsman Tumor Board this coming Thursday and talk with them about my complex case. I was quite upset with the news because I finally had accepted I was going to have the surgery and now it will be another week.

A few things did take place Wedesday/Thursday. I read through some paperwork the Cancer Center gave to me for the D.C. Trip in case I got sick and had to go to the hospital for some reason. My CT scan that was done at the beginning of November said there is a nodule in my lung. It said it may be a cyst....but I've heard that before and it was CANCER. I pointed it out to the Huntsman team I met with.

Secondly, the resident that performed a breast exam on me was concerned about a lump he found in my right breast and there was an indentation of my breast which is another warning sign of cancer. My initial cancer was in the left breast and 3 lymph nodes.

Then, Dr. N. felt the lumps in my axilla and said that he wanted an ultrasound and biopsies of them that day. He also wants me back down there next Wedneday for another MRI. He said radiologists have their own way of ordering MRI's and reading them. I'm guessing they'll review them with the tumor board in Thursday morning.

There were two radiologists that performed the ultrasound and the lead radiologist thinks the lumps are both cysts. Again, with the damn cyst diagnosis, when I almost accepted that diagnosis. If I hadn't, I would be looking at a stage III or IV cancer right nowl It's alreqdy highly aggrssive enough as it is. So, I insisted on the biopsies. Another radiologist performed three biopsies and he had an extremely difficult time getting into the lymph node/tumor/scar tissue because it was so hard. He said he was glad we were doing it and it was not a cyst or it would have popped easily with the biopsy needle and the clip which makes a poppong sound as it takes the tissue sample. I will be called on Monday or Tuesday with the biopsy results.

Then, we have to make another trip down there for the MRI on Wednesday. It's about a two and a half hour trip for those of you from other parts of the country, or the world. As long as we don't have snow on the roads it's a good drive. Snow is another matter altogether!

I did some Christmas shopping yesterday and almost dropped after the second store. Once home I was very out of breath and exhausted. At the Huntsmand my blood pressure was 149/98, which is very high for me but I attributed it to nerves. Today I went to a church service and was exhausted by the time I was dressed and ready to go. I again and extremely fatigued and short of breath. So, now I'm in bed ready for a nap. I may call the cancer center and let them know I'm not bouncing back the way I thought I would. I'm just about a month out of my last chemo session and maybe I'm expecting too much too soon, or something else is going on. I just know I again, can barely stay awake or walk a flight of stairs, or shop!! And I love Christmas shopping so that was a big bummer!!!

Oh, I just remembered one more thing. Michael and I met with an OB/GYN to her opinion on just having my ovaries and Fallopian tubes removed versus a complete hysterectomy because I am BRCA2+ and she without a doubt I need a full hysterectomy. She is concerned about other peritoneal cancers such as liver, stomach, and gall bladder cancer, even though triple-negative breast cancer typically recurs in the lungs, liver, or brain first. THAT'S why I was so upset to see the finding that there is something in my lung. She thought it would be GREAT is if they could do the double mastectomy and the hysterectomy at the same time, and I've made several phone calls and that just want haappen at this point. Maybe that can be done at the same time as my breast reconstruction. Michael asked her again, why it's so imperative I have her double mastectomy before radiation and she said, "because we want you wife to be here in five years." That made my heart skip a beat and reminded me of how aggressive this cancer is.

Thanks to all of you for your support from near and afar. I can see statistics of visits to the site and I've been excited to see viewers have looked at the site from Canada, Russis, Germany, Indonesia, and many more countries.

While I said I was ready mentally for the surgery to happen tomorrow, I have to admit the surgery scares me....I won't say to death...but I'm extremely anxious to wake with no breasts and from the photos I've seen of other women, incisions are very long. So, the postponement give me a few more days to adjust to he thought of surgery...and get additional
Christmas shopping done.

I'll post again once I know what the biopsy results are and when surgery is scheduled.

Ciao!
P.S. I found a few typos and corrected them...the others I hope can be excused because of my fatigue. Thanks!

Happy Halloween

Happy Halloween!  I decided to take advantage of my lack of hair and I went shopping for tattoos to plaster on my slick bald head and saw the fake snake tattoos.  I thought they were perfect to be Bald Medusa for Halloween!  I had another funny moment when I was buying them.  I was wearing a nice hot pink suede jacket and the woman asked me if I'm a survivor and if I shaved my head for Halloween.  I was more ready for a strange comment (this time) and told her I'm currently a chemo patient!  I told her I don't plan on having this look again and told her about my Medusa idea.  She loved that idea.

I'm a bald Medusa!  Happy Halloween!

Slithering snakes!  

I sported my new look at a great Halloween party on Saturday night, to work today, and went to dinner tonight with family.  It was fun and created some great memories for me while being bald!  I made the most of it today!

I haven't always been a big fan of Halloween. When I was in kindergarten, an older student at my school (this was in Wisconsin) was kidnapped and murdered on Halloween.  The state of Wisconsin changed legislation and children weren't allowed to trick-or-treat in the dark after that for quite some time.  After that I also had dog-tag with my name and address on it.  I had tucked those memories deeply away until a few years ago and a criminal investigation show brought it all back.  I called my Mom and talked with her about Lisa's death. My Mom confirmed some of my memories and also shared with me that she and my father knew the man.  I Googled it and found the man didn't spend much time in jail.  Such a tragedy.  

Today put new and more happy memories as I walked around work and showed people my "costume." 

But, I also have had deeper thoughts about fear today as well.  Cancer is scary.  I've written about my thoughts and feelings to this point, and again, I strive to be honest with my feelings.  Just after my last chemo session I went to my accupuncturist for a session, and for some reason, I was feeling quite emotional and in turmoil.  When he asked me how I am doing - I broke down in tears.  I haven't shed many tears since my diagnosis.  I told him that I am very afraid that I'm not going to make it through this.  And maybe that's why I've been alluding to having such a hard time in my last posts and for some reason I was able to voice those feelings to him.  He said he's treated many cancer patients and they have voiced the same fears.  

I shared my feelings with my husband, my sister, and a great friend over the weekend.  They were supportive and understanding.  They didn't dismiss me and say it's all going to be "fine."  That meant a lot to me.  Some days I'm not sure it's going to be fine.

You know how something feels better after you get it off your chest (pun intended, ha ha)?  Well, I want to be completely honest about my feelings so here goes...

• Triple-Negative Breast Cancer is aggressive.  My oncologist said TBNC is the most aggressive form of breast cancer.  
• The tumor removed from my breast was not found to have breast cancer cells. This is typically also called "Cancer of Unknown Primary Source."  Or CUP for short.  So, it could be the cancer is somewhere else and wasn't found on the PET scan.
• What was found in the PET scan - three of the lymph nodes in my armpit were cancerous, showing that it is aggressive and had spread quickly.  
• I have the genetic mutation for BRCA2.  That increases the risk for other types of cancer.  Bummer.
• The risk of recurrence is up to 30% and that's just to high for my liking.  And if it does show up it typically does so in the brain, liver, or lungs.  Bigger bummer. 

So, those are my biggest fears at the moment.  I'm not thrilled about my chemo session tomorrow either, but after tomorrow I only have ONE chemo session left. That is good and happy news!  

I shared these thoughts with a 16-year breast cancer survivor today and she told me to "cancel" and "delete" those thoughts.  I like that concept and plan to use it.  Maybe, "cut, paste, and delete" those thoughts into another universe.  I'm just venting about my fears.  I pray all of the treatments I'm enduring are successful.  I just have these occasional thoughts.  I'm sure it's normal.  

____________________________

One more final note.

Last Friday at work we had a meeting with the staff from the entire health department.  That encompasses an eight county region in southeastern Idaho.  GREAT people.  Well, I've mentioned, they have been wearing pink for the last few months to support me and to raise awareness about breast cancer.  On Friday we were together for teambuilding, and at one point the Director asked everyone wearing pink to stand up.  I was in the very back of the room and was surprised when almost the entire room stood!  The Director asked, "and why are we wearing pink today?"  Someone yelled, "because we love Denise!"  At that point my tears freely fell again.  

I said thank you then, but I'm not sure everyone heard me during that moment.  So, for my co-workers that follow my ramblings...I want to send you a heartfelt THANK YOU.  I am blessed to know each of you.  I'm beyond grateful to you for your support.