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!

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.

Breast Cancer Awareness Month - My Thoughts in Words

As a breast cancer survivor, I have found myself surprisingly emotional about Breast Cancer Awareness Month this year. At this time last year I was in the middle of my chemotherapy treatments and sick, bald, and tired. Life IS much better this October than it was last year. I've been in remission since I completed radiation in February, however I've been told I will never be "cured," and that weighs on my heart. However, I am living under the premise that cancer will not make its way into my body again! I am eating healthy, exercising, and taking steps to ensure positivity is the rule and not the exception in my life.

I am returning once again to my creative side in order to create joy and happiness for myself and others. I created this "wordle" above with words that were woven into my life story in the past 16 months.

Hope, Courage, and Faith to ALL cancer survivors,
Denise

Triple Negative Breast Cancer in the News

Here are two stories in the news this week. Both stories talk about the how aggressive TBNC is. I'll have a post about that topic in the coming days.

Smallpox Virus May Help Treat Deadly Form of Breast Cancer

Breast Cancer Study Reveals Cancer Types

LIVESTRONG Day and an Update

Hello! I'm jumping back into my blog on LIVESTRONG Day. It has been a day of reflection for me. Let's see if I can quickly update everyone.

I feel like this is almost a confessional..."it has been three months since my last post." I apologize for my absence! My last post referred to life changes and my happiness. I took some time away from the blog to get more grounded and to focus on my survivorship. I was happily walking on my new path when I hit a small detour...

About a month ago I had quite a scare. As I got ready for work on a Monday morning I began to cough up blood. It was enough to really startle me. I thought I would drop my daughter off at school and just call the cancer center to make an appointment and then had the realization that based on my history I should go to the emergency department (ED). And, triple negative breast cancer (TNBC) typically comes back in the lungs, liver, or brain. Based on that, I was more than concerned, I was worried I had lung cancer. In the ED I was initially tested for a pulmonary embolism based on my history of chemo, radiation, and the six surgeries I've had in the past year. The test was a CT angiogram and the test came back negative, but the nodule on my rib that we've been watching was detected. My surgeon was immediately called and I was instructed to call her when I went home. I did. When I saw her two days later she referred me to have a biopsy. She wanted me to see my oncologist immediately about the bloody cough. My oncologist referred me to a pulmonologist and they agreed I should be on an antibiotic because we have had severe wildfires and the smoke in our valley had made air quality bad.

I did not have a biopsy because the doctor who was to do the biopsy said he couldn't see what the ED and the surgeon saw. He did agree to drain a seroma that was also detected using the CT angiogram done in the ED on the previous Monday. The CT machine was used to find the exact location of the seroma. A catheter (yes, another darn catheter...I severely dislike them!) was inserted into the area and it was drained. Starting to me, and slightly to the doctor, it was solid blood. Typically, seromas are clear lymph fluid, I believe. He said it is likely trauma from the mastectomy that I had traumatized by running. Hmmph. His recommendation is to compress the area when I do run but now I'm nervous to run again! The fluid was tested for malignant cancer cells becaue it was the side my cancer was on and no cancer was found in cytology. Thank goodness!

Back to the biospy...after he drained the seroma he told me he didn't want to biopsy the nodule on the right side becaue he couldn't see anything. I immediately began to cry. I was extremely embarrassed because there were two additional people in the room and they could see how upset I was. I explained that my cancer was intially dismissed as a cyst last year, but I insisted on it being removed, and it was found to be cancer that had already spread to my lymph nodes. At that point, the doctor had me get off the CT table and showed me the CT, and he explained his vantagepoint. He said based on the CT he looked at he thought that the pain and the nodule I feel may be cartilage between my sternum and the rib. There is a risk of puncturing a lung and he didn't want to take that chance.

Because of my fear, I was willing and wanted him to risk it. He wouldn't. I cried in the recovery room and for hours after that. I'd even walked to the hospital for the procedure and made an arrangement to get a ride home, and just walked home in tears, trying to make sense of the situation. Why did the PA from the ED and the surgeon see something that the doctor didn't see?

I have to come to terms with being a survivor of TNBC. Thinking I was being overly concerned and maybe too "paranoid" my oncologist told me that I must actually be diligent and he himself said "paranoid" about any little changes I may detect. He said there will be a time in three years when I can relax a little bit and then he'll tell me not to be so paranoid, but for now I must be.

I underwent additional testing last week and the pulmonologist firmly believes bloody coughing episode was brought on my bronchitis from inhaling the smoke from the wildfires. If at any point it happens again a bronchoscopy can be performed to investigate further. In all the testing, one health issue was detected and we are making some changes for a better outcome for my health.

It makes cancer survivorship a bit challenging when you have be looking around the proverbial corner to see if cancer is standing there in the shadows. I was happily going about my life when I got a bit of a wakeup call that I cannot dismiss cancer quite yet. Quite honestly, it put me into a bit of a tailspin. But, I am determined to be happy and not let the thought of a recurrence consume me. I will not!

On a different note, I am participating in a breast cancer support group. The name we agreed upon is "Breast of Friends." I am so thankful for their support. They understood my anguish and stress over the past month because they have been there. Each of us as a very unique and different experience. And that is a major point to bring up - for anyone reading my blog with TNBC or another form of breast cancer - please remember that this is my journey and that your journey will be very different from mine.

Happy

I must say it is nice not to have any new medical concerns to blog about! The blog is always in the back of my mind as a way to reach out and provide education about Triple Negative Breast Cancer.

In the past year I have blogged as I battled TNBC. Now, I'm in remission (I've been told I will never be "cured"). My new mission with this blog will be to provide you occassional updates on my health, but moreso, I want to continue to use this resource as a way to provide edcation about TNBC and breast cancer prevention. I have a great role model in Patricia Prijatel, who blogs on "Positives about Negative." Her blog is exceptional!

Anyone currently battling TNBC, and survivors of TNBC, are waiting for new research to reveal a breakthrough. TNBC is the second most aggressive form of breast cancer. A major complication in treating this type of breast cancer is that because there are no proteins receptors, estrogen, progesterone, or HER2-NEU to bind to, medications cannot be used after traditional cancer treatments to stop the cancer from recurring and/or growing. The only for treatment for "us" is chemotherapy and radiation. Whereas, estrogen and progesterone positive breast cancers can be treated with medications such as Herceptin and Tamoxifen after completing chemotherapy and radiation treatment. I will monitor news related to TNBC and post it here. Information is knowledge and knowledge is power. And, to me, it's a comfort to know researchers are doing their best to find a cure.

Me? I recently had a bone scan to again try to determine if the mass on a rib is cancer. A PET scan did not reveal cancer. The bone scan did not see cancer either.  Wa hooo! The oncologist and I are monitoring it closely. It continues to remain painful. I've been assured I can contact the cancer center at any time if there is a change in the mass.

Last year at this time, I had undergone my first chemotherapy session. I was bald, of my own accord, because I had a "head shaving party" and family and close friends took turns at removing each hair from my head, on MY terms, rather than it falling out after I started chemotherapy. I thought of cancer at least once every minute. I'm happy to report I can go very extended lengths of time without thinking about it! In fact, there are days I only think about it once or twice. I never thought that would be possible. It was consuming. It is not any longer.

I am LIVING life! I am STRONGER. Cancer does not control me. I am in control of my life. And I am happy!

Results and Realizations on July 4th

Let me start where this blog ends. I've been writing this latest blog entry as people are out celebrating Independence Day. It has taken me a few hours to put my thoughts down...hopefully I did a decent job trying to convey those thoughts...

I began this day taking my daughter to participate in the July 4th parade. I later went to a park to watch the parade. I didn't get a single glimpse of my daughter along the parade route (so many people!) but I am so proud of her. She handed out candy and water to spectators and has the blisters to show for it. I thought of my first grandson, Donnie, who was just born last week. My son was here for 10 days to surprise his wife and be here when his son was born! It was such a wonderful week. And at the end of last week I got my results.

I called last Friday to let them know I was anxious (an understatement) to get the results. The receptionist said they were going to call me to schedule an appointment. I immediately thought it was bad news. I explained how crazy my week had been and that I needed to know THEN what the results were. She scheduled me for a few hours later (thank you). I was prepared for bad news again. It wasn't! 

The oncologist had heard how anxious I was and came to get me, Michael, and Jennifer (I was so worried I took my major support system with me) from the waiting room. Before we even got out of the waiting room he told me it was good news! Once behind the closed door of the exam room he told me no cancer was detected when the PET scan was done. I felt such a wave of relief. I have received so much bad news on the cancer war that I expected it again. Finally, good news! He cautioned that occasionally the PET scan can miss something. He encouraged me to keep track of the mass on my rib. That won't be hard... it is quite painful. We discussed it further, and I will go back in four weeks. I can call at any time if I have fears that the area is still growing larger. I am now moving forward with the thought that I'm cancer free and in remission. 

Lately, I have done serious soul searching about the past year - and the future. It's not easy to find the right words to explain what I'm trying to convey. Our family has been through so many challenges, I took my triple-negative breast cancer diagnosis as just another blow, and instinctively I knew I had to persevere and fight. Let me try to explain myself a little better.

In the beginning of June I met with a breast cancer survivor who has been encouraging me from afar during the past year. She is the friend of a dear friend. I finally had a chance to spend time with her and she was so knowledgeable and helpful to me! She received her diagnosis four years ago and is incredibly insightful. She put words to many thoughts in the back of my mind...WAY back in my mind...in the chemo fog. As the fog is slowly lifting I am processing what has happened in the last year.

I believe I was so stressed out after my diagnosis I went into somewhat of a self-preservation mode and charged through it with a brave face and "I can do it attitude," and I didn't process what was really going on. Yes, I researched every little piece of information about TNBC, BRCA2 genetic mutations, chemotherapy side effects, radiation, diet, and made educated decisions about my treatment and surgeries, but I distanced my own emotions in order to get through everything. I used one part of my brain for important decisions and set another side silently upon a shelf. It may sound strange to people who know me well. I wear my heart on my sleeve, so to speak, and often blurt out to anyone listening what is going on in my life. This is no surprise to my friends and family. However, I have now come to some pretty big realizations about how I got through the last year and I have decided to rescue the other part of my brain and myself.

I'm no longer in crisis mode. I'm recovering and in remission. And yet, when I found myself soul searching, I was not truly happy with my life. I was moving through each day in a mechanical manner. Going to back to work and resuming activities I hadn't participated in for a long time. I forced myself to leave the house and venture out a little more. I had been emotionally and physically  hibernating. Then, I crawled out of the fog, just a little at a time. I found myself laying in the warm sunshine at a community concert. I walked along a beautiful and sparkling lake with our typical 15mph southeastern Idaho wind right along with me. I went back to church. I was overjoyed listening to the pastor and Praise Team once again. I was awakening and beginning to touch upon ways in which my world had changed while I went through chemotherapy, radiation, and six surgeries. 

During this time, there were other occasions where I sat back and took a deep breath and thought about my life -  and asked myself what I needed to do in order to be happier? Life changing thoughts took place. Some hard decisions were made versus difficult choices. I made a few choices in order to set myself on a new "marathon" course.

I've had several more realizations as I've struggled to write down my thoughts this evening. I have used the word "I" so much I'm reminiscing about Stuart Smalley in the Saturday Night Live skit where he famously said, "I'm good enough. I'm smart enough. And doggone it, people like me." 

It has made me uncomfortable to share how detached I was. But, I wanted to share in case there are other cancer marathoners out there following my blog. You can learn through my observations. Being scheduled to get results isn't always a bad thing and you can get through the journey in ways you didn't know were possible. 

I thought I was doing so well battling cancer. I had the most fantastic support system anyone could wish for. I was in awe of their support for me and thought I was brave as I went through the year without shedding many tears. But I wasn't really supporting me. Now...I am. Now...is when the bravery begins. Living life now. On this Independence Day. After cancer. 

I can hear the fireworks now. And I am son grateful for this day.

PET scan tomorrow

NOTE: I WROTE THIS NOTE WITH LOVELY PARAGRAPH BREAKS AND THEY ARE NOT SHOWING UP. ARGH. June 17th, 2012. The first time I had surgery to remove the lump I found in my breast. The surgeon told me in the recovery room it looked like cancer. I really trust her judgement and knew in my hear it was cancer. That starteds a long year. Six surgeries in 10 months, 4 months of chemo, six weeks of radiation which were five days a week. I've had some complications along the way. Unfortunately, I haven't really had time to really reflect and be excited about being a cancer champion. I have two abnormalities showing up on a recent chest CT and I'm having a PET scan tomorrow. One mass I can see and it has grown quickly over the last month. I went to see my surgeon about it and she reviewed the CT and can see the TWO abnormalities. The waiting game is hard. Tortuous, in fact. Is "it" back? the larger of the two is over two inches long and 1.5 inches wide. It hurts, as did my first tumor. I don't think I'm regrowing a new breast. Or a new rib. As soon as I know I'll post about it.

Ultra Marathon in April-May

Okay, I begin this blog with my heart on my sleeve and Catherina on my leg....STILL.

As I said in my last post, I was admitted to the hospital on my 44th birthday because I was hemorrhaging and had a severe infection in my bladder. I honestly don't remember must about those first days in the hospital. Actually the entire month of April and part of May is a little foggy. I have now come out of the fog. I'm vry grateful the fog has lifted.

As I said, the cultures they performed indicated I had E. Coli in my bladder. I was cognizant enough, with my job in public health, to know certain strains are worse than others. I lost five units of blood from the infection. Levaquin was the drug that did it's work and enabled the doctor to perform surgery on May 7th.

The urologist planned to perform the surgery without opening my abdomen. That did not work out. I had an incision from my pubic bone to my belly button. The incision was stapled together after surgery.
What a site to see all of the staples for the first time! And the tubes coming out of my body. I had THREE! One from the urethra, a JP drain tube (similar to what I had when I had my node dissection and mastectomy), and a supra-pubic drain tube. That was a new one to me. It was inserted into my bladder during the surgery, runs out from my incision to Catherina the 5th or 6th on my right leg...I lost track amidst the fog. TOO many. Along with Catherina, I had to wear diapers because of my incontinence. I only left our house twice in April because I was embarrased. I just called them diapers at first, then a friend of mine informed me they were to be called "adult briefs." In the end, I just called them my "big girl pull-ups." I am now rid of them. Hopefully I won't see them until my 90's!

The surgeon took four square vaginal tissue, for the lack of a better word, "swatches," from my vagina and sutured them over the holes in my bladder. As I said, it took him 5 hours. I wish I could have seen it. As it was, afterwards, I remember a bright light in my face and Michael in my face telling me the surgery took "FIVE HOURS." He said he was actually resting in my hospital room and wasn't near me as I got out of the operating room. It begs the question...what was that light?! I think this last year has been hard and I had a "moment." I'm not sure if it was "the light." A part of me likes the idea and emphasizes that I'm really here to DO SOMETHING BIG with my life. I have known that all along!

So, then the recovery began. The nurses were all FANTASTIC. So supportive. Listening to my rants. Honestly, several of the nurses and my family/visitors all had to deal with my hallucinations. It will make you laugh. It certainly makes me laugh now. Then, not so much.

I hallucinated I heard people out on the floor trying to be quiet so I didn't hear them....and I just knew Matt Shriver and Lance Armstrong were coming to see me. I mean I was SURE they were there. And I thought there was a phone bank marathon to raise money for non-profit agencies in Pocatello. Most people were donating money (I could hear the phone band and my colleagues on the phones, as well as my Mom and my Sissy) but, others were bringing in things they wanted to trade or sell and then donate the money to the fundraiser. I would beg my visitors to let me know what was going on and they would say, "um, nothing Denise." Their response made me think they were hiding something. Oh, what effects are caused my medications for pain! By the end of the 9th day, I realized I was just hallucinating. I also hallucinating there were ants in the bathroom and of other people coming to see me - that didn't. It's still on my bucket list to meet Lance. I would love to be involved with starting a LIVESTRONG chapter in Pocatello. I've heard from a close friend the Boise Chapter is awesome. We need one in Pocatello as well!!!

That being said, I stayed home for a week after being discharged from the hospital and started back at work this Tuesday. Of course, I did too much the first day and worked less hours the following two days. I'm having bladder spasms today so I've been staying down because, #1) they HURT, and #2) I want to make sure I don't do anything to impede the healing process. I will have another cystoscopy on Tuesday morning (5/29), which is when they insert a camera into the bladder. NOT the most pleasant of procedures and NO pain meds or hallucinogens. I'll have to think of my favorite things and pray that everything has healed suffieciently. If so, the next day, the urologist will remove the tubing coming out of my bladder and thus Catherina the 5th or 6th will have served her purpose and her demise will be ending up in a biohazard red bag. I am hopeful I have healed and this part of my experience will be FINITO!

A Few Other Things to Share

I was discharged from the hospital 22 hours before my son and daughter-in-law got married!! My Sissy took me shopping the morning of the wedding to find a dress I would be comfortable in (i.e., did not put any kind of weight or pushing on the tubing and my staples.) The wedding was fabulous. The weather was PERFECT. Conor and Bonnie were glowing.

They went to Yellowstone for a few days and then reality came crashing back to all of us. Conor packed up his room and left five days after the wedding with Bonnie to go to SLC for his mobilization to Ft. Hood, Texas. Bonnie, Olivia, and I watched with tears as he walked up the steps of the plane and turned to wave goodbye. This was the third time I've had to say good-bye to my guys for a deployment. The one consolation is their little baby is due in a month and Conor will be able to come home for 4-5 days to see his son. Then, he will serve out the rest of his deployment and he will be in Kuwait for 9 months. Heartwrenching to a Mother and his wife.

Next Up

Now that I'm not completely absorbed with my bladder issue - pun intended - do you get it? I am back to reality that I'm a cancer survivor of an agressive cancer. I will see the chemo oncologist soon and then change between the two oncologists for appointments every three months. We talked at length about it at my last appointment at the Cancer Center and the radiation oncologist said it will be "vigilant monitoring" with the hopes nothing like a lump develops for the next three to five years. That is the timeframe this type of cancer comes back. Once I'm at 5 years I'll be good to go as far as TNBC. But we also need to be vigilant of other types of cancer because I am BRCA2+. This is a lesson for me to stop being a stressed out Energizer Worry Wart and live in the current moment. Since I found my first cancerous myself one year ago now, I'll still be checking every now and then for a lump. Certainly not daily. I'm ready to move on and, as I said, live in the moment.

Daily Reality

Reality really hit me today. Yes, I was resting, but I needed more water, and I happened to walk by our laundry room. I noticed the cat boxes were full. That was something I wasn't supposed to do while being treated for cancer. No doo-duty! I loved it. But, I cleaned them today. I didn't enjoy it at all...but is a sign that life is getting back to normal.

Signing off for now. I'm really reflecting on Memorial Day Weekend and its meaning. It makes me mournful and thinking about what this world would be like with no war.

With that...I'll say a little prayer for PEACE.
~Denise

Major Complications

Yes, I had a major complication last week. On my birthday,I began to hemmorage. Michael took me to the hospital and the said I had a raging infection. I don't remember anything in regards to being admitted to the surgical floor. I've been in the hospital for four days now, and tomorrow I am scheduled to have surgery to repair two vesicovaginal fistla's. I hope the surgeon looks at my chart and sees that the infection has taken care of the infection so well. The cultures grew E. coli! And, it has been very difficult to overcome. In fact, one of the nurses last night said I had a near death experience. Okay, off to sleep I go. I just wanted to write a quick post about what has gone on in this last week. LiveSTRONG.

Challenges Continue

My last post to the blog was just after my hysterectomy. I had hoped I would be back at work now and beginning to walk/run again. Not so. Right now I'm sitting on the couch with a baseball hat on, haven't showered since yesterday, and in general wondering why do I continue to have complications? My breast cancer was not typical and stumped the doctors, and now another bump in the long marathon I've been on.

There are portions of this blog that make me a little uncomfortable to share, but my mail goal in this was to be completely honest about my journey. Here goes...

After I wore a catheter, AKA "Catherina," for the two weeks recommended by my doctor, I went in to have it removed. I was so thrilled to be detached from it. Walking out of her office I was ecstatic and felt like most of my journey was done!

About 45 minutes later, Michael and I were at a strore, buying a treat for me for having completing my final surgery (or so I thought) and all of the sudden, you guessed it, I was incontinent (wet my pants). We left and went home quickly so I could shower and call the doctor. The told me it woud take a short while for my bladder muscles to work and to do "kegel muscles." Most women are familiar with them.

It didn't work. In the middle of the night Michael had to go get me adult diapers. After having a surgery to remove both breasts, I must say, wearing an adult diaper has been almost worse than that. I called the doctor's office again the next day and said "something just isn't right." They told me to come in right away and they worked me into the schedule. Dr. S did some tests and said she could see where I was leaking urine and I would have to have another catheter. Only 24 hours of freedom. She wanted me to see the urologist that assisted in repairing my bladder after it was nicked and created a tiny hole, during the hysterectomy. I was to see him in another 2 weeks.

Next problem, even with Catherina, who I would rather name something like "Bocephus," I was STILL leaking and had to wear the lovely undergarment.  By back hurt extremely bad and I just didn't think it was right that I had continual incontinence even with Catherina. We went to the emergency room and testing was done. Catherina was taken out because they thought it may have been a faulty catheter. Catherina #3 installed. My gynecologist thought I could have surgery the next week to repair the leak. Can I say that she is awesome. She calls me once or twice a week to check on me. I don't think I've ever had a physician call me to check on me.

Next, I saw the urologist a few days later and he performed what is called a cystoscopy. When you say it correctly it's - cyst-os-co-pee.  Yes, PEE at the end of the procedure. Nice. They removed Catherina #3 and then used a scope to look at my bladder. Under no sedation I was able to say hello to my troublesome bladder. It said nothing back. Yes, I may be a wimp on pain issues, but it was awful. We could see the stitches he'd sutured and other areas that looked like they needed additional time to heal. Catherina #4. Two more weeks until I was to visit him again. Now, those two weeks are almost done.

I still have leakage and when I see him on Thursday, my gynecologist said she suspects he will have to do a surgery through my stomach to see where the fistula is. There are different types of fistulas, but they think there is a hole where he stitched my bladder to my vaginal wall. Without being treated it can be very dangerous and life threatening.

I am extremely tired and sleep about 16 hours per day. Dr. S said it is probably associated to the hysterectomy and lack of ovaries. And she also reminded me I've been through a lot in the last 11 months and my body is trying to adjust.

I am trying to adjust. (And after this section I will lighten it up a bit.)

• Adjust my undergarmet (Depends) IS the best, by the way.
• Adjusting to the humiliation of it all, and then realizing it is a dangerous medical situation that cannot be taken lightly.
• Adjusting to the happiness I'll have when I change my grandson's diaper when he arrives in June, and hopefully not my own too.
• Adjusting to dry hands from washing them constantly.
• Trying to adjust to having worn the catheter's for over a month now. I feel like my dignity is completely gone, as if having no breasts wasn't enough.
• Adjusting to no activity. I'm too tired. I thought I could try to get some work done from home and so far that hasn't happened. But, I will concede that it's finally making me rest and I pray the fistula will magically fix itself in the next 4 days.

Here are funny things I've thought of...kind of Denise O'Farrell's Top Ten List:
10) Lisa Rinna, the actress, was at some red carpet gig and she announced she was wearing Depends. It was hilarious to me. Her husband, Harry Hamlin was with her and he said "they poured her into that dress and you cannot tell she has it on." 10a) She was wearing black so of course you couldn't see anything. 10b) She probably had Spanx over the diaper so it could not be seen.

9) I have some unopened packages of a rival brand to Depends. I don't want Michael to go back and ask for a refund - maybe I could donate them to an Assisted Living Center. Or, I could think of other fun things to do with them. Maybe I can be "diaper girl" for Halloween. Uh, just wearing them on my head with sweats...again never going out in public like that.

 8) I've seen one of the Walmart People videos and a woman has on shorts and a catheter on her leg. I thought it was SO gross. That was not, and will never be, me in public.

7)  I will be a pro at this when I'm 80 or 90 and have to resort to diapers once again! Perhaps then it won't be so horrible. 

 6) On those nights I sleep 16 hours in a row, it's actually convenient, I don't have to get out of bed to pee.

5) Remember when we had small children still in their diapers and we would sniff the general diaper to see what was lurking inside, I haven't asked anyone to do that, and I can be honest and tell you after being in the catheter bag for a time, pee stinks.

4) On that same note, I will not be eating asparagus while I still have the cather bag.

3) I love Lance and am strill thrilled to receive his video and a tweet from him, and I love my yellow LiveSTRONG bracelet, but not yellow pee.

2) I had a solicitor come to the door last weekend and he was quite persistent. I had wrapped up in a blanket because I was wearing shorts and I didn't want to see Catherina. The non-public health thought that went through my mind was to whip out Catherina and spray pee on him. I know, NOT appropriate, but I thought funny nonetheless.

1) If I have to wear Catherina much longer I'm going to "bling" her out so she looks prettier. Pink ribbons, rhinestones, CZ. She'll be the best looking Catherina #4 ever.

BONUS: I now can say I've peed standing up and don't see what the big deal is. 

Thanks everyone for your kindness and support.

Surgery Update and INSPIRING Message

It has been just a little over one week since my hysterectomy. It was quite an adventure! I must have jinxed myself because I told my husband Michael over and over again that I was nervous about the surgery and that one of my biggest fears was having a catheter.

On Monday, March 19th, I checked into the hospital at 11 a.m. and then went into surgery promptly at 1 p.m. It was done laparoscopically (which I'm very thankful for), so I have only three incisions. During the surgery, she found my bladder was in a very odd place and adhered to my abdominal wall. She needed to move it to get to the other area to remove my ovaries and uterus, etc., and when doing so, she noticed a small hole in my bladder. Not a good thing. She called a urologist to assist her and he sutured it closed. The bad news is that I have to have a catheter in place for two weeks! I've had one week with it. I call it/her "Cath-erina." Now one week to go.

For people who are wondering why I had this surgery, it was because I have the BRCA2 genetic mutation which puts me at great risk to get ovarian cancer.

I was in the hospital for two nights and am resting and recovering well. I am sleeping SO much! I've had two days where I've slept for about 19 hours without waking...the beauty of having "Cath-erina." The pain is still present, but lessons a little every day. I find just sitting up and chatting with visitors is painful and my pain increases significantly.

Another thing about this surgery, it put me into what is known as "surgical menopause." And, because of the BRCA2 mutation I cannot go on hormone replacement therapy. I am on a medication to lessen hot flashes, but I still have several a day. No fun.

Now, on to the message. I'll insert it now and comment on it later!

My closest family, friends, and co-workers know I am a HUGE Lance Armstrong fan. I've read his book, "It's Not About the Bike" several times, and most recently when I was diagnosed with cancer myself. My husband and I have been watching the Tour de France for 22 years and were immediate fans when he started racing in "The Tour."

I have a friend who works for Lance and he told Lance about my journey through cancer and some of the difficulties I've had recently. Getting the message from Lance ranks up there with my wedding day and the birth of my children.

Thank you Matt and Lance!!

Another Surgery Tomorrow

Hello family, friends, and blog family,

Yes, I'm having my fifth surgery since June of 2011, when a lumpectomy was performed, and cancer was found. The physician knew by looking at it that it was cancer. I think I saw tears in her eyes as she told me. That was our 22nd wedding anniversary. It's one we won't forget.

Tomorrow I will be having a total hysterectomy. It's being done because I'm BRCA2+, a genetic mutation greatly increasing my chances of getting ovarian cancer. It increases many other types of cancer as well, but my oncologists wanted this surgery done ASAP. I'm nervous about it. And, I'm hungry because I can only have clear liquids today! And I have to do the lovely "bowel prep" so my colon is collapsed, making it easier to perform the laparoscopic hysterectomy. My doctor said she'll look to see if I have adhesions from my c-section (1992, Conor), and I have too much scar tissue she might have to skip the laparoscope and open me up to get to everything. I also asked her to take a look at my appendix while she's in there. My mother had cancer in her appendix when I was in high school, and then 15 years ago she was diagnosed with breast cancer.

She is a survivor as well. I'm now saying I'm in "remission" and a "cancer survivor." The radiation oncologist said I will never be "cured." He said we both need to be vigilant to catch a recurrent cancer when and IF it try to take another go with me. That was not what I wanted to hear. I wanted to hear I would be "in the clear" once I was at the five year mark. It is said to be the best time for a woman with Triple Negative Breast Cancer to have cancer recur. Really, the first 3 years are crucial, to watch for cancer with TNBC. That being said, because I'm BRCA2+, I'll always have to be vigilant about anything that seems to aggravate me for more than 10 days. If "said aggravation" lasts 10 days, I have to call the cancer center immediately.

I am going to have a chest scan on March 26th to see if the nodule in my lung has changed since it was performed in November. Maybe radiation blew it to smithereens. Two days later I get the results from the oncologists. I'm praying it's not cancer.

 For now, I just need to get through tomorrow successfully, and go through recovery, and get back to work. The reason I haven't written as much lately is when I'm done working 3-5 I'm exhausted and I go to sleep. I'll hopefully start to get my energy back and write more about recovery and beginning life anew "post-cancer." I can't wait to walk and run again! I can't wait for spring. We've had a few glimpses of spring here in Idaho, but as of right now, it has been raining for about 24 hours, and it is sleeting in our backyard. It's nearly 8 pm and I'll be heading to bed soon. Nothing to eat or drink after midnight.

We head to the hospital at 11am and the surgery is at 1 pm. I've left packing for tomorrow morning so I can use my nervousness to good use. I'll be back in the blogosphere once I'm feeling a bit better!
------------------------
Ok....I'm adding on to yesterday's post. I am SO HUNGRY. My last meal was at Buddy's on St. Patrick's Day! Hopefully it was good luck! 


Now, off to pack. 

Feeling Hopeful! With a Few Minor Hitches.

Hello blog followers! Let me begin by showing my HAIR! It's growing pretty fast!

Hair. Wonderful Hair!

Today is President's Day Holiday. I cherished sleeping in and not having to make my radiation appointment at 11:15 am. That time will be ingrained in my memory forever. Good news though! I only have SIX radiotherapy treatments left. I will be done next Tuesday, February 28th. Yea! I'm surprised at how well my skin is tolerating it and I've lucked out with only a slight radiation rash. The area is itchy, my skin is pink, and have new freckles where they are targeting my radiation. I am struggling with diminished range of motion and have started a better routine to break the adhesions forming in scar tissue from the mastectomy. Overall, the hardest part has been fatigue. I typically work a few hours in the morning, go to radiation, and go home to take a nap. 

I am happy to report my depression has lifted! Yes, a few changes to medications and my diet and I am feeling HAPPY and HOPEFUL. When I meet with the Radiation Oncologist tomorrow I'm going to ask him how I can refer to my status: 1) I had cancer; or 2) I am in remission. There is still the question of the nodule in my lung. They will do a CT scan in the next month or so to see if it has grown. The important thing is that I'm ready to move from being treated for cancer to being a survivor. 

That being said, I must have a hysterectomy as soon as possible. It will likely be the second or third week of March. While it's not something I'm looking forward to, it is something they insist must be done soon because of my BRCA2+ status. It puts me at greater risk for ovarian cancer.  Other cancers as well, but I'm not dwelling on them at this time.

Here's a small update about my mastectomy recovery. I still have pain from the double mastectomy and am adjusting to my new look. I am putting off reconstruction surgery for a while. The reasons? I still have pain. I finally had a realization about the pain. I read about many women who reported having phantom pain after a mastectomy. I believe that is likely what is happening to me. It is hard to describe the feeling. It feels like a burning pain. I think they also refer to it as Post-Mastectomy Pain Syndrome. I will talk with the doctor further about it tomorrow. It's quite uncomfortable. 

The "hitches" I'm refer to in the title of the blog are related to vision changes, tinnitis, dizziness, and psoriatic arthritis. The radiation oncologist said to give myself a few months to see if the changes in my vision, tinnitis (ringing in the ears), and dizziness diminish after my treatments. He said he cannot necessarily say these issues are related to chemotherapy, but they could be. I'm frustrated with my vision changes because I have to take my glasses (I'm nearsighted) off to read small print now. 

I was diagnosed with psoriatic arthritis about five years ago. I was nearly crippling at the time. I gave myself injections of Enbrel and it went into remission in 2008. Because I went through chemotherapy my immune system was non-existent. Because my immune system is starting to wake up - the psoriatic arthritis is waking up too. A few weeks ago, I saw an arthritis specialist and an ultrasound was performed on my left hand and foot and I have erosion and effusion between many joints. Psoriatic arthritis also affects the ends of tendons and ligaments. I've had pain in my left achilles heel for sometime. Now I know why. It is affecting my hands, elbows, knees, and feet. The specialist did some labwork and I'll receive those results in two days. I tested positive for HLA-B27 (a marker for auto-immune diseases) five years ago. He cannot start to treat it until after I have completed radiation. As I said earlier, I've made some changes to my diet, which I'm hoping will alleviate the pain and maybe I won't have to go on arthritis medication.

I've been watching documentaries about nutrition over the last month.  Forks Over Knives, Food Matters, and Fat, Sick, and Nearly Dead.  I also highly recommend Crazy Sexy Cancer. Each one had the same theme. Eating fresh fruits and vegetables is extremely healthy for you. Of course, I knew this already. It's recommended that we eat fruits and vegetables in our daily diet. I just read the American Cancer Society's recommendation is at least 2 and 1/2 cups per day. The documentaries highlight the benefits of a raw food diet. My friends and family have heard about my new diet approach for the past two weeks. The most inspirational movies to me were Crazy Sexy Cancer and Fat, Sick, and Nearly Dead.

Chris Carr, from Crazy Sexy Cancer, has inoperable and untreatable sarcoma in her lungs. She has kept it at bay by juicing raw fruits and vegetables, among other lifestyle changes that have been beneficial for her. Joe Cross, from Fat, Sick, and Nearly Dead, flew from Australia to New York for a 60 day juice fast. He stayed in New York for the first 30 days and traveled from New York to San Diego the remaining 30 days. His starting weight was over 300 pounds and he lost around 100 pounds in the 60 days...just drinking juiced fresh vegetables and fruits. I was so inspired by him I bought a juicer and stocked up on fruits and veggies two days later and have been drinking at least two large glasses of juice a day. I am a little OCD at times and have held myself back from the 60 day juice fast while I'm recovering from my cancer treatments. I spoke to one of my oncologists about it and he had the nutritionist at the cancer center pull together reading materials for me to read, but he said, "I'm not going to tell you that you can't eat a diet with fruits and vegetables!" 

Each movie talks about the increased energy one gains from eating a raw foods diet and I can attest to that myself. I think it's another reason why my spirits have been so much better of late. I also think it's because I'm being proactive and doing this for myself, in order to minimize the risk of a cancer recurrence. Forks Over Knives showed how several people were able to eliminate heart disease by a raw foods diet.  I wrote to Joe Cross about how much I enjoyed the documentary and how inspired I was and he wrote me back! He responded by saying he just read about how this type of diet reduces cancer risk. I am all for that! Of course, this should also be accompanied by exercise! I started walking a few weeks ago and did too much too soon. I need to start again with a modified approach! 

As I reach the milestone of completing my cancer treatments, I want to THANK my family, friends, co-workers, Chemo Angels, and anonymous people who have posted on my blog.  You have all have given me such incredible support! I have no doubt doing something like this alone would be nearly impossible. THANK YOU to each of you!!!  :) 

Soon, I'll start into the next phase of life. Whether it's in remission or as someone who "had" cancer. I will have to go to the cancer center every three months, for three years, to catch a recurrence early. There is a 30% chance it will come back. I'm focused on the 70% chance that it won't. 

From now on my life will be about eating well, exercising, spending time with family and friends, making a difference, laughing, being grateful for the little things in life, staying positive in spite of obstacles, spending time in nature, incorporating more yoga & meditation into my life, ensuring I am living in the moment, and LIVING LIFE TO THE FULLEST!

Radiation Treatments and Battling Depression

Note:  I started this blog last week and haven't been able to sum up the energy to finish it until now.  It will be a little long because a lot has happened.

On Tuesday, January 17, 2012, I had my first radiation treatment. I was not quite one month out from my double mastectomy. I thought radiation was going to be the easiest part of my journey. I met with the radiation oncologist and the staff made a "form" that I lay in so the radiation is directed where the cancer was found in my breast, in the area the cancerous lymph nodes were found, and to go up into my neck just past my collar bone.

I arrived on Tuesday at the scheduled time and the radiation (rad) tech met me at the front desk and escorted me to the radiation suite. Another tech was there and showed me the desk area where they would be watching me on monitors during my treatment. At that moment, I felt a lump in my throat and just nodded that I understood. Then they took me into a room that said "Linear Accelerator." It was the same room I'd been in days before to make the mold, but this time was different. This time I knew I would be receiving my first of 30 radiation treatments. Every day for the six weeks I have to say my name and date of birth and lay down on a table that is akin to the table one would lay on for a CT or MRI. Before the first rad treatment they needed to take some chest x-rays to make sure my heart wasn't located in a strange spot (so it doesn't get zapped). On the table, in the dark, I looked up at the machine, staying still, and I could see the reflection of my chest in the glass. I could see the six inch scar on my left side. It is still shocking and hard to look at so I focused instead on the Matrix-like green lasers that were shooting down at me from the ceiling. Again, the lump started in my throat and this time tears trickled down the sides of my face. I was surprised and embarrassedd to be so emotional at that point. Next, the rad tech came in and said the x-rays were fine and I was ready for my first treatment. It takes about five minutes.

Oh.....Last Friday, the radiation oncology nurse gave me three bottles of aloe vera gel and explained where I needed to apply the gel. She said by the end of this week I the areas being radiated will be pinkish and by the end of the 30 treatments I could have burns, blisters, and I hope not to go down that road...but I have extremely sensitive skin so it wouldn't surprise me if I did have problems with it. She asked me how I'm doing with all of this and I said my chief concern is fatigue and I just can't seem to get over it. She said "honey, it's going to take about a year, mainly because of the chemotherapy." That took my by surprise. A year. I hope not.

Mentally and physically I'm finding radiotherapy is not as easy as I thought it would be. I meet with the radiation oncologist every Monday. I was very thankful to have the opportunity to speak with him about my struggles. First off, I've lost five pounds, which normally would be a good thing, but they really don't want me losing weight right now. I can tell on the days I don't have any appetite I feel very sluggish so I'm doing my best to eat. Then, I told Dr. C of my fatigue and ultimately that I'm finding it hard to do anything at all. I sleep 12 hours a night and then as soon as I've had something to eat I want more sleep. I don't find much joy in anything.  I have dealt with depression for 20 years and this is much worse. He said he knew my Type AAA personality might have a problem with all of this the first time he met me. I am organized and I've been thrown a few surprises along the way I didn't anticipated.

I also asked him how much radiation I am receiving. He said a typical dental x-ray is about 60 rads (a dose) and the dose I'm receiving: 200 rads 5 days a week for 6 weeks.  That's a LOT!  No wonder my skin is pinking up. It helped me to understand that this is a bigger deal than I thought it would be. He also said he has seen other patients have a struggle during radiotherapy as well. People are more apt to be helpful and "there for you" when you've had surgery or are going through chemo and then stand back during radiotherapy "because it's not a big deal." He says that bothers him. It is a big deal and very hard on the body. But, the radiotherapy takes about 15 times in total and I wouldn't want to drag someone to a treatment session.  Michael has gone with me most days and has been very supportive.

Another thing I wasn't aware of is that it can take a toll on your bones. My sternum and ribs hurt terribly.  The sternum is a combination of recovering from the double mastectomy and radiation, but my lower ribs are probably just from radiation.  Ibuprofen just doesn't cut it some days. In some cases bones can crack or break.  Wow.

I have 21 treatment sessions to go.  Four weeks. I know I'll be looking back on it sooner than I expect. For now, I am trying to ensure better health by taking a better multi-vitamin, taking vitamin C, Fish Oil tablets with Omega 3's, Calcium, Vitamin D3, and my anti-depressant medication. I'm using a full-spectrum lamp because I'm not outside often and either is the sun. I did go on one walk this week to get some sun.  I walked around two blocks and it really hurt my sternum.  But I did it.  If I go to work for a few hours or to a couple of stores shopping, I am exhausted for the next 2-3 days.  I never expected that to be how this would work out!

As hard as it is to admit I am dealing with severe depression, I feel like I should be honest about it because there might be someone in a similar situation. I know I've been looking up information related to depression and breast cancer. And more information on radiotherapy. Tomorrow, I am going to meet another doctor to see if any adjustments can be made to my medications to get me through this very difficult time. And just talk about what I'm dealing with...and the other things that are affecting our family. Michael's bomb blast injuries, Conor leaving for Kuwait in May, Conor and Bonnie's baby on the way in June, and Olivia's struggles because our life has been so chaotic now since Michael's first deployment in 2005.  Ultimately, my counselor says I'm in survival mode and need to shift to self-care mode.  I'm working on that.

Teachable Moment
Here is information on depression from Fact Sheet on Depression Women's Health.Gov:
Not all people with depression have the same symptoms.  Some people might only have a few, others a lot.  How often the symptoms occur, and how long they last, is different for each person. Symptoms include:

• Feeling sad, anxious, or "empty"
• Feeling hopeless
• Loss of interest in hobbies and activities that you once enjoyed
• Decreased energy
• Difficulty staying focused, remembering, making decisions
• Sleeplessness, early morning awakening, or oversleeping and not wanting to get up
• No desire to eat and weight loss or eating to "feel better" and weight gain
• Thoughts of hurting yourself
• Thoughts of death or suicide
• Easily annoyed, bothered, or angered
• Constant physical symptoms that do not get better with treatment, such as headaches, upset stomach and pain that doesn't go away

You can get help from:  

• Family doctor
• Counselor or social worker
• Family services, social service agencies, or clergy
• Employee Assistance Programs (EAP)
• Psychologists and Physicians

There you have it.  Another bump in the marathon.  It's actually more like I've stopped running and am sleeping in a tent during the marathon while runners pass me by.  I'll get back on track and get running again, very soon.  

If Tears Could be Turned into Snow...

This past week has been quite difficult and my tears flowed freely.  Unbelievably, it's January 11th and we have very little snow in southeastern Idaho.  The other day it occurred to me if my tears could be converted to snowflakes the ski resorts in the area would be in great shape.  I'm not a skier (I've tried and am typically injured in some fashion, but I LOVE to drive in the snow and marvel at its beauty).  

My double mastectomy was three weeks ago.  I still have pain, which is normal.  I have been told it takes two months to completely heal.  No one told me how long it takes to heal emotionally from the surgery.  I still struggle with how I look.  Each incision is about 6 inches long.  Ghastly.  But, I remind myself continually it was to help save my life.  It didn't help when I took another fall last week at the Huntsman in SLC at my final post-op check up.  A nurse weighed me, took my vitals, and when I stood up, I just started to tip over and caught myself on the arms of the scale before I completely hit the ground.  I was mortified.  They wanted to put me into a wheelchair but I refused.  The next day I realized I caught myself with my ribs - and they are still sore as well.  

There are two lines of thought about my four falls.  One is the pain medication and the second is my balance has been significantly shifted because of the mastectomy.  Hmmm.  Thoughts to ponder while I am more careful walking stairs and stay away from scales.  

The final appointment brought good news.  There was NO CANCER found in the pathology done on the breast tissue.  The chemotherapy did its job!  I'm very happy with this news.  VERY!  

The surgeon did have to drain fluid (called a seroma) from under my right incision.  If not drained it can cause complications so I agreed to have it done.  Before I knew it he had a large needle with one end inserted into a bottle and the other end under my incision and I looked at my dear friend Jen and told her to breathe after seeing the look on her face!  She asked quickly, "what about something to numb the area?" and the surgeon said they had cut through all of my nerve endings so there shouldn't be any pain.  There really wasn't, until we were on our trip home and it was a little sore.  However, because of the fall and draining the seroma, it was very sore the next day.  I'm amazed at how concave the area is. For a time, I thought he had done a radical mastectomy on each side because my sternum sticks out so far now, but I can flex my pectoral muscles on each side.  Now, I know why I could never really see progress while weight lifting for my pecs, too much breast tissue covering them up.  Now is a different story, but I won't be weight lifting anytime soon.  I did walk a bit the other day and it was glorious. I cried the entire time, but it was a good cry.  

Yesterday I met with a counselor at the Cancer Center and hours later went back to met with the radiation oncologist.  I made the appointment with the counselor because I am overwhelmed with my emotions.  As I said, I still am in pain, I'm having a bit of insomnia because it is hard to get comfortable, forced early menopause is wreaking havoc on my system, and I'm still fearful of the unknown.  I spoke with the radiation oncologist in the afternoon about the paperwork that indicates there is a nodule in my lung.  He is going to speak to the chemotherapy oncologist about it and we'll keep an eye on that for a change in size.  So, while I'm thrilled there was no cancer found in the pathology following my mastectomy, I'm fearful it's still lurking around.  

These are all normal feelings.  The counselor and I also talked about EXPECTATIONS I have for myself and because it's the New Year, I made goals for myself.  He said I need to lower my expectations right now.  Not in an adverse way, but I've gone through so much in the past six months it's catching up to me mentally and emotionally and I'm not going to heal and recover if I don't learn how to relax and no expect so much out of myself.  Ugh.  I understand that and know I have to in order to recover - especially because I will be starting radiation next week.  

I have another appointment this morning to have a CAT scan of my chest and upper body so they can exactly determine where the targeted radiation will go.  They will also make a form for my body to lay on so I don't move at all during radiation and cause damage to my lung or heart.  And I'll  get a couple of skin markers (he doesn't like the word tattoo) to be the pinpoint area for the radiation.  He indicated it will of course be targeted to the area of my breast where I found the original cancer, the area where the cancerous lymph nodes were found, and then near my collarbone where the subclavicular lymph nodes are found.  I will go through 30 sessions over six weeks.  I will start on next Tuesday or Wednesday.  I'm not nervous about radiation at all.  After chemo and the double mastectomy it should be a breeze. 

Below is a song by Kerrie Roberts called "Keep Breathing," and I have listened to it non-stop over the last few days.  I think it's beautiful so I wanted to share it.  

One final note, I am heading back to work after my appointment at the Cancer Center.  I'm anxious and excited all at the same time.  I'm nervous about it because I'm so tired and sore, but it's time.  There is work to be done!  I'll do the best I can and build up over time and when I'm tired I'll head home to sleep.

Here is a quote from a book I purchased called "Be Happy."  It contains quotes from numerous authors.  Today, I like this one.  "How simple it is to see all the worry in the world cannot control the future. How simple it is to see that we can only be happy now, and that there will never be a time when it is not now."  ~Gerald Jampolsky  

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.