5th Line of Treatment, but first…

Disney

WE’RE GOING TO DISNEY!!

At the beginning of the school year, when we saw that the kids had a long winter break, we decided to take a trip to Mexico. As fall went on, though, my cancer was not under control and I was uncertain about a trip out of the country. By December, my oncologist came right out and said no. She didn’t want me out of her reach in a foreign country. She did say I could travel within the US, where she would be able to help me, if needed. So, we decided on Disney. My kids are teens now, and it’s something I’ve always wanted to do with them. But not over winter break! So we are going in January!

It was a good choice to postpone, too. Winter break for me was mostly bed-ridden. I was very sick. My 4th line chemo was brutal. It was like having the worst flu imaginable for 5 out of every 7 days for two weeks, and then a week off to “recover”. My week off didn’t give me any relief, though, and I was beginning to realize that it was symptoms of the cancer that were effecting me, rather than side effects from the chemo. At this point, I had already booked the trip for my next week off chemo. I came close to canceling a number of times, but decided to wait for my next oncology appointment before I made any drastic decisions. 

My appointment was the 2nd day of 2020. The doctor told me the current chemo wasn’t working ( which I had already suspected) and I’d be taking a break while the next line treatment goes through the insurance approval process. At that point, I asked if I could take a break until after the trip. I need to let my body recover a bit and I need to gain weight. I’ve barely been able to eat, and when I do eat, I end up super sick. I’ve lost way too much weight. She agreed. I’m still uncertain about the trip. The chemo is out of my system, but I’m still suffering a lot of symptoms from the cancer. I can’t eat, my digestive system is a mess, and I’m very weak. The trip is fast approaching, and I want to make it happen. 

My doctor also referred me to a doctor at Froedert, who does a procedure that sounds very promising for me.  It is called HIPEC.  http://www.hipec.com  HIPEC is the surgical removal of all visible tumor in the abdomen followed by a “bath” of heated chemotherapy directly to the abdomen. In medical terms this is referred to as cytoreductive surgery (CRS) and hyperthermic intra-peritoneal chemotherapy (HIPEC). So far, this surgery has been used mostly for patients with mesothelioma, pseudomyxoma peritonei and patients with peritoneal cancer from a colorectal tumor. Some hospitals also offer HIPEC treatment for other indications, such as peritoneal metastasis from gastric or ovarian cancer. My oncologist does not know if it’s been used with Metastatic Breast Cancer yet, but my mets are to my peritoneum (lining around the stomach and intestines), so I’m hopeful that I will be considered as a candidate. I am worried that there may be a fight with insurance if I’m the first MBC patient to have HIPEC done. 

HIPEC

I have my consultation for the surgery this Wednesday. I’m very hopeful that the surgery could give me the relief that I need from the symptoms of the peritoneal mets. I will fight to have the procedure done, no matter what it takes! It sounds so promising. 

But first, 

WE’RE GOING TO DISNEY!!

Metastatic Breast Cancer Awareness Day

Metastatic Breast Cancer Awareness Day

mbc day
pink is not a curepink ribbonOct 13th is the one day during Breast Cancer Awareness month that acknowledges Metastatic Breast Cancer. It’s time to flip it the other way around. The awareness campaign has been a success. Everyone is aware. What comes to mind when you see this ribbon? My guess is that everyone knows that this pink ribbon is the breast cancer ribbon.

MBC ribbonNow let me ask you what comes to mind when you see this ribbon? Some of you may know that this ribbon symbolizes Metastatic Breast Cancer.  But how much do you really know about MBC? Here are some facts taken from The Metastatic Breast Cancer Network. For the full list of facts and to learn more, click HERE.

  1. What is Metastatic Breast Cancer?  (pronounced as Met-a-STA-tic) MBC also known as Stage IV is cancer that has spread outside of the breast to other organs such as bones, liver, lung or brain. This process is called metastasis. (pronounced as Me-TAS-ta-sis)
  2. What happens when breast cancer spreads?
    Breast cancer that spreads to another organ, such as bones, lung, or liver, is still breast cancer and does not become bone cancer or liver cancer or lung cancer.  Under a microscope, the tumor cells will still look and act like breast cancer and will be treated as breast cancer.
  3. Who gets metastatic breast cancer?                                                                                No one brings metastatic disease on themselves. The sad truth is that anyone who has had an earlier stage of breast cancer can experience a metastatic recurrence and some women have metastatic disease on their initial diagnosis of cancer–despite mammograms and early detection!
  4. Why does breast cancer metastasize? (pronounced as Me-TAS-ta-size)
    Researchers at this time can’t explain why metastatic disease occurs, but they’re working on finding answers. Early detection is a detection tool, but it does not a cure or prevent an early cancer from coming back in the future as metastatic disease.
  5. What are the statistics on incidence of metastatic breast cancer?
    There are estimates that 20-30% of patients with an early stage cancer will have their cancer return as metastatic, even if they were told their early stage cancer had been “cured.” Another 8% of new breast cancer cases are found to be metastatic at their initial diagnosis.
  6. What is the main difference between early stage breast cancer and metastatic breast cancer?
    Metastatic Breast Cancer (mbc) is treatable but no longer curable. Treatment is lifelong and focuses on preventing further spread of the disease and managing symptoms. The goal is for patients to live a good quality of life for as long as possible.
  7. How is metastatic breast cancer treated?
    Depending primarily on the kind or subtype of mbc, patients may be on either targeted therapies or systemic chemotherapy. Radiation and surgery are also sometimes used.
  8. What are the different kinds (subtypes) of metastatic breast cancer?
    Subtypes for early stage and metastatic breast cancer are the same: An estimated 65% of patients have Hormonal (estrogen or progesterone driven), also called ER+/PR+; 20% have Her2+(fueled by a protein identified as Her2 neu) and 15% have Triple Negative Breast Cancer (TNBC- which does not have any of the 3 above known biomarkers: ER. PR or HER2). These numbers are approximate, because some people have more than one subtype ( HER2+ and ER+) or their subtype may change over time.
  9. How many women and men die of breast cancer each year?
    Approximately 40,000 die of breast cancer each year—a number that essentially is unchanged over the last 20 years. All deaths from breast cancer are caused by metastatic breast cancer.
  10. How many people are living with mbc in the US?
    Although the National Cancer Institute collects statistics of patients who have an initial diagnosis of mbc, the NCI does not count metastatic breast cancer recurrences.  Studies estimate that there are over 155,000 women and men living with metastatic breast cancer in the US–and doing our best to live well!
  11. Is metastatic breast cancer a chronic disease?
    Not yet, but that is an important goal. As researchers identify more and better treatments, MBC could become a chronic disease like diabetes or HIV/AIDS, where patients can be stable on medications for 20 or more years.
  12. How much is spent on research funding for metastatic breast cancer?
    Several years ago, the Metastatic Breast Cancer Alliance did a study that found that of all research grants, funded by major public and private sources from 2006-2013, only 7% of funds studied metastatic breast cancer, even though metastasis is what causes breast cancer to become a deadly disease.
  13. What is National Metastatic Breast Cancer Awareness Day?
    October 13 was sent aside by unanimous House and Senate resolutions in 2009, establishing that one day in October should recognize and bring awareness to metastatic breast cancer. One day is not enough but it’s a start for year round awareness of what mbc is and why it’s important for all of us.

stats

So, what do I hope you gain from reading this post? My goal is to encourage you to look deeper.  Look beyond awareness of breast cancer to more research and education for Stage 4 breast cancer. It’s time to move beyond pink ribbons and awareness and the inaccurate information that early detection guarantees a lifelong cure for everyone. This is not the case for too many women that I know. It’s time to focus more funding on MBC. I have hope for a cure.

 

Five Year Cancerversary

fiveyearsToday marks the five year anniversary of the day I heard the words nobody wants to hear. “You have cancer”. The five year “cancerversary” is a big milestone for most cancer survivors because, statistically, after five years the chances of recurrence drop significantly. For me, that part no longer applies since my cancer has already metastasized. Despite that, I’m still going to celebrate my five year survivorship. I’m still surviving. Looking back, these five years have certainly had rough spots. I’d be lying if I didn’t admit that. 

These five years have also been packed with love, adventure and great experiences. Looking back, these have been some of the best years of my life. I married the love of my life. We bought a house together and built a home (We’re days away from finishing our kick-ass bathroom renovation!). We’ve become a tight family of four. I joined Team Phoenix and gained an entire family of amazing sisters. I completed two triathlons, and encouraged my kids to try it. We took an epic two month long trip (our “Familymoon”) in a vintage RV named Cliff. We camped and explored several National Parks, include some amazing places in the Canadian Rockies. We rode horses to a tea house high over Lake Louis. We’ve come face to face with a grizzly bear and her baby. We’ve ridden motorcycles through these breath-taking National Parks. We’ve slept under a meteor showers in the Badlands. We’ve hiked glaciers, stood on the edge of the Grand Canyon, sat in natural hot springs, jumped off a cliff into an icy Blue Hole, and hike to remote Cliff dwellings. I’ve been blessed. These five years with family and friends have brought me so much joy. 

Our plans for new adventures are always bubbling. We have a couple more trips planned for 2019 already and my bucket list is over-flowing with adventures I want to share with my family. I also have a few applications in for retreats that have been established for cancer patients. One includes the family and one is all about pampering little ole’ me. 

I can certainly say that cancer has changed my life in many ways. It has become cliche, but the diagnosis has made me more aware of the things that are important. It has helped me shed the things that were holding me down. It  has taught me to listen to my body and take care of my health. It has given me a sense of urgency to live fully and pack in the things I want to do and share with my family. It has taught me to say “yes” to the challenges, get-togethers, and activities, in case I don’t get another chance. (Well-except for the “Frosty 5K” race that my friends did in spite of negative 20 degree temperatures- That challenge was not for me…) It has also made me aware of my mortality (a condition all of us share). Not one of us knows how long we have to live, and nobody has an expiration date stamped on them. I now take each day as it comes and do what I can. Some are better than others, but I’m sure that’s not unique to me.

Life has become a tough balancing act, facing an incurable illness. The pains and fatigue and sickness are real. The fear of what the future holds is real. My goal is to not let that fear paralyze me. Fear won’t stop me from planning my future. Fear won’t stop me from pushing my limits. Fear won’t stop me from taking each day for what it is, good and bad. My goal is to stay strong (thank you Team Phoenix for making it a priority to be Strong, Proud, Alive and Re-Defined!!). My goal is to raise my daughters and give them the opportunities to learn and grow and explore the world. My goal is to thrive despite a cancer diagnosis. I’ll always have hope that the good days outweigh the rough days. I’ll always have hope for a cure. I’m taking it one step at a time. Today-I’m celebrating five years thriving with cancer. I hope there will be cake! (Honey-will there be cake?)