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?)

Health Insurance Blues

photo dec 16, 8 19 40 am

I have a love/hate relationship with my health insurance company. It is a necessary evil. Without it, I would be way beyond medical bankruptcy. With it, insurance providers control aspects of my health care that should be between me and my doctors. There’s not much I can do about it. In my invincible 20’s, I thought I didn’t need health insurance. I was living a very healthy lifestyle. I ate well and got plenty of exercise and sleep. I was healthy. I still am healthy, actually, except for this one thing….

As I got older, I realized I needed insurance. Now I know how lucky I am to have good health insurance. I also know the frustrations. Insurance issues are a common problem in my network of cancer patient friends. Chemo and surgery are being delay, or worse, denied by insurance companies. I understand that medical costs dictate some things, but it hurts to see women who can’t get the life-saving treatments they need because insurance companies won’t pay. The added stress dealing with insurance issues and finances is the last thing a cancer patient needs. Stress kills.

Medical costs with a life-long illness are mind boggling. I stopped adding up expenses after my first year of treatment. I left off around $600,000. Since then, I’ve had 4 more surgeries, several scans, tests, and shockingly costly chemo meds. I’m guessing that by now I’m a million dollar baby. Luckily, My insurance has covered most of my medical bills without too many headaches. This makes my current argument more frustrating. 

Last night, I tossed and turned. I was hit with a panic attack. I don’t know who dropped the ball. Somewhere between my cancer center, the pharmacy, and the insurance company, my chemo meds did not arrive on my doorstep in time for me to start my current cycle. My loving husband is much more calm and cool than I am.  He’s better at handling long waits on hold and repeated conversations that go nowhere. He has spent hours on the phone every day this week trying to get my pills for me. For some unexplained reason, the pharmacy claims we had a change of insurance and did not approve my meds. Our insurance company did not change. We did upgrade our plan as of the first of the year with a lower deductible and co-pay (still trying to avoid medical bankruptcy). The pharmacy already sent one round of pills in January, so I don’t know what the issue is. I’m angry because nobody informed me that there may be an issue with my pills. It’s my third cycle of pills, nothing new or unforeseen. 

I was supposed to start taking them on Sunday. Now it’s Wednesday, and I’m still waiting for the hospital to get a pre-authorization for the insurance company. (And my cancer clinic is closed today due to weather). In the overall scheme of things, missing a week of pills should not have a profound effect my health, I’ve been told. That’s hard to wrap my head around, though. I’ve had a rapid, positive response to this new med after only two cycles, and the delay is messing with my head. Friends have said that I’m lucky to get a nice break from side effects. True enough. Side effects suck. But I can’t help but fear that the delay is giving cancer a chance to regain a foothold. This is not something I should have to stress about. If everyone had done their jobs and got my cancer meds to me on time, or at least informed me early enough that there may be a problem so we could have started leaning on them sooner, I wouldn’t have a problem. 

I’ve had a rough seven months dealing with the effects of cancer metastasizing around my lungs and abdomen. The first line of treatment did not work and my symptoms were coming back. By fall my shortness of breath and cough started up again. The fluid around my abdomen worsened, and I had pain and a loss of appetite. Over the holidays, I lost weight that I didn’t want to lose. I was exhausted, and generally feeling ill, weak, and frail. After two rounds with my second line of treatment (the pill I’m currently waiting on), these symptoms started to improve. The cough went away. My gut no longer felt like I had a bowling ball in it. My appetite improved. The meds are working. I want my meds. I want my health.

Maybe I’m just cranky because the windchill is 55 BELOW zero.  

This Phoenix Will Rise Again

This Phoenix Will Rise Again

The fire and ashes are building all around me. I’ve been through this cycle of burning down and rising up from the ashes before, and I will do it again. Metastatic Breast Cancer. My current set-back.  As a breast cancer survivor, it’s not an unexpected hurdle. Sadly, I’ve witnessed my peers going through similar difficulties. All I can do is take it day by day, trust my treatment plan, and do my best to redefine myself once more.

I haven’t been feeling well for some time. I wrote it off to my slow recovery from the knee injury, and the fact that I have not been able to get back into a regular exercise routine. This spring, I generally felt weak and out of shape. About a month ago, my symptoms were getting noticeably worse. I had shortness of breath, and I developed wheezing and a cough. I have to say, this is the worst cough I’ve ever had. And I’ve had all forms of bronchitis, pneumonia, etc. This is definitely worse.

On July 23rd, I went to the ER with sharp pain in my ribs along with the severe cough and shortness of breath. I knew something was not right with my lungs. After a number of tests, I ended up being hospitalized overnight. They found that I have pleural effusion (fluid in the lining around both my lungs). They did a thoracentesis (stuck a catheter into the pleural cavity via my back- yes, I was awake…) on the right side to drain the fluid and sent it for analysis. The left side was more complicated. The fluid was loculated, hardened into multiple, fibrotic pockets, therefore, not free flowing nor able to drain. I was told at this time that surgery would be the only way to clear the gunk from my left side.

Over the next week or so, I did several other tests, X-rays, CT scan and blood work. And coughed and coughed. 

On August 1st, I saw my oncologist to try to make sense of the results and develop a treatment plan. The fluid in my pleural cavity (space around my lungs) contains cancer cells that had spread from my original breast tumor. All of the other scans are clear, though, and the cells have not formed any tumors that could be detected. Of course, ILC, Invasive Lobular Carcinoma is known for being extremely difficult to detect via scan, so there’s that grain of salt. 

The cells have changed slightly from the original tumor (ER/PR+HER2- to ER+PR/HER2-), but not enough for me to need to go through chemo again. My doctor will put me on hormone therapies (Ibrance and Faslodex) which attack the cells directly. In her experience with other patients, the cells are quite responsive to this therapy. 

Originally, my oncologist felt that the surgery would be too invasive, and that the treatment would clear up the fluid. However, at my next appointment, on August 9th, when I told her that the cough was becoming unbearable, she called the lung specialist. He advised that since the left side is loculated, it will be difficult for the hormones to get into the fluid to do their thing, and he recommended the surgery. With that, he and my oncologist called a lung surgeon immediately and I got in for an appointment the next day. Yay, the perks of having a dream team of connected super-doctors.

Yesterday, August 10th, I met with the lung surgeon to discuss a robotic surgery, called thorascopy (no, I will NOT be awake this time). He will make a small incision and insert a camera, and several other incisions for the surgical instruments that will be used to “break up” the pockets and scrape out the goo. After that, there are two possible outcomes. Either my lung will re-inflate and he will put talc in the cavity to make the lung stick to the pleural lining so that fluid can’t re-fill the cavity. Or, my lung won’t re-inflate, due to damage or tumors or other bad stuff, and he will need to leave a catheter (chest tube) in so that the fluid can continue to drain. This could be for a matter of weeks or months. I’m pulling for option one! But, at this point, I’ll do whatever it takes to relieve the cough and get the cancer cells out. If that means a chest tube, then that means a chest tube. Depending on the outcome, I could be in the hospital for one night or for several nights.

Wasting no time, surgery is scheduled for this Monday, August 13th. This is the least amount of time I’ve ever had to prepare for surgery. My pre-surgery nesting mode is kicking in to high gear, but I don’t really have the energy to do the things on my “to-do” list, so I’m just going to have to accept that stuff isn’t going to get done before surgery. Surgery and healing are my number one priority right now.

This is not a hurdle I wanted to face, but it is the hurdle in front of me, so I have no choice but to charge at it and jump it. Overall, I am very positive about fully recovering from this. Right now, I am laying low and resting as much as I can (and did I mention, coughing…). I look forward to getting some relief soon with the surgery. I will keep everyone updated as new info comes in.