Once in a Blue Moon

infusion chair

I’m changing my handle from “Queen of Side Effects” to “Blue Moon”. It seems every time my doctor talks about side effects that happen only once in a blue moon, they happen to me. And it works well with my last name (Blue Moon Knight). So, yesterday I experienced something that only happens once in a blue moon (in 2% of patients, to be precise).

After working through insurance delays, and lab test, and a surgery to insert a MedPort, I was set to start Taxol, the iv chemo that would be my 3rd line of treatment. 

I arrived at the clinic and went back to the lab area to have blood drawn. I was happy to be able to access the MedPort (more on that procedure in the next post) and give my veins a break from the constant pokes. This is where the day started to go wrong. They could flush saline into the port, but no blood was coming back out of the port. We tried all the tricks-raise one arm, raise both arms, look left and cough, look right and cough. After about 5 syringes of saline, I was sent back to the infusion room to see if the nurse would have any better luck. I ran through all the tricks again, but I drew the line at turning cartwheels. No blood. So, it was time to inject something to break up the clot. Unfortunately, we needed to give it 30 minutes to work, so it was decided to use my arm for the blood draw after all, preventing further delays in starting the IV. 

visit from a friend

At the end of the 30 minute wait, my friend stopped in and gave me some good luck to get the port flowing. It worked and we were back in business! I was hooked up to saline and a variety of pre-meds (Benadryl, steroids, etc) were given to help reduce the side effects of the Taxol. All was going well, and soon I could smell the chocolate chip cookies baking!! Yes, you heard right. Another friend was there volunteering in the clinic, and part of her duties include baking cookies! I got the first one hot out of the oven! I’ll take the silver lining wherever I find it.

A couple hours into the appointment, it was finally time to add the Taxol to my IV. Immediately, my day turned upside down. I felt the drug the instant it hit my bloodstream. Suddenly, everything felt wrong. Thankfully, Andy was there to get the nurse, because I couldn’t function. Within moments, I was having a severe allergic reaction to the new chemo. It’s almost impossible to put the experience into words. I felt heat and pain spread through my body. My heart rate skyrocketed and my blood pressure went out of control. My face turned hot and red and I broke out into a terrible sweat. I was in agony, throwing up, unable to breath, open my eyes or answer questions. I’ve never experienced anything like it before (and hope never to again!) I had three nurses adding stuff to the IV to counter the reaction. I was given oxygen. The doctor suddenly appeared by my side, rubbing my arm, reminding me to breath, asking me questions, and reassuring me that I was going to be okay. My mind was racing almost as fast as my heart. Now what? If I can’t tolerate this treatment, what options do I have left? All of it was completely horrifying. 

Gradually, the meds they gave me started to relieve the symptoms and I was feeling better. They mentioned that we could try the infusion again, at a slower pace, but we all agreed that it wasn’t worth the risk. The reaction the first time was dramatic enough and I wasn’t ready to experience that again. Ever! 

The doctor eased my fears about what we would do next when she explained that my reaction was to the other drugs mixed in with the Taxol. Luckily, there is another version of Taxol which does not contain the same mix. She would switch me to that. Of course, that means one more delay in treatment, pending insurance approval and a holiday weekend. I am now scheduled to start treatment next Tuesday, meaning I will have gone without treatment for over a month. It is frightening to think of what the cancer is doing without anything to fight it, but I am hopeful that the next infusion goes much more smoothly, and I can get back to kicking cancer’s ass. 

In the meantime, Andy’s company gave us two tickets to the Packer game tomorrow night. I am super excited. I’m a lifelong Packer fan who has never been to Lambeau Field. Nothing is going to make me miss this game! Bucket List item-Check!

Changing Course

It has been a summer full of adventure. Some ups and some downs, but overall, a pretty good summer. Amid doctor’s appointments and pills and side effects, we managed to squeeze in a big road trip West, State Fair, Ren Faire, Girls Rock and a couple camping trips. We also started a butterfly garden! This is life with metastatic cancer. You never know when, or where, disease progression will hit. Take every opportunity to take the trip, see the friends, tackle the bucket list. Live fully, in small increments (between naps). Things may change quickly, putting simple things out of reach. 

My first sign of metastasis was a year ago, when fluid filled around my lungs. Chest tubes and Ibrance took care of that for a few months, then the cancer moved to my pelvis. A second drug, Xeloda resolved those problems and I had a few healthy months. In May, I started having new issues in my abdomen. My appetite was terrible, complete with GI issues and a swelling belly. I told my oncologist before our big trip out west, but CT and pet scans showed stability, and she said “take the trip”. I knew in my gut, though, that something wasn’t right. I’m tuned into my body, now more than ever, and I always know something is wrong before any tests confirm it.

July 5th, we loaded up the camping gear, and aimed west with a loose plan. We saw the Bonneville salt flats, and ran fast over the crunchy surface. We went to Crater Lake, Andy’s favorite National Park, and dipped in the unworldly, pristine water. We made it all the way to the pacific coast, where the girls floated in salt water for the first time. We walked among the giant redwoods. Heading back east over twisty mountain passes, we stopped at “Borden State Park” to get to know Adventure Trio and share travel stories around the campfire. Kaylei was the bold one who jumped off the waterfall. We saw the Tetons. We lingered in Custer, SD, where Michelle’s hospitality at Chalet Motel was a warm and welcoming step back in time. We explored caves, roamed with bison and saw the badlands again. We covered a lot of miles. 5,200 miles, to be exact (no breakdowns-well, for the truck, anyway. The kids may have had a few…)

Back home, we had a few days to re-pack for a weekend of camping and the triathlon where a new batch of brave cancer surviving women (Hey Team Phoenix!) became triathletes. We were there to cheer and help take pictures for the team. That was how our July went. I was making the most of everything, even though I was feeling worse and worse. By the Sunday morning of the triathlon (July 28th), I was ready to go to the hospital. Our 5:00 alarm wasn’t going to get me moving. I sent everyone ahead, took some pain pills and caught up in time to watch the race start. Packing up camp was exhausting, but with help from the family, I made it home to unpack. I re-packed  again. This time, it was my hospital bag, an all too familiar process now. 

After several hours of tests, and waiting (mostly waiting) in the ER, I was told I could either leave and let my oncologist order a paracentesis (a procedure to drain fluid from around the abdomen), or be admitted and do the procedure the next day. I couldn’t have waited much longer, so I was admitted for a long, uncomfortable night in the hospital.  I did have a few lovely visitors brighten my mood.

img_5497

As the fluid started draining, I could feel instant relief. I could breath better, the nausea stopped, the pain in my spine faded, and I started to feel better. 4.2 Liters of fluid was taken. I’m not sure where I kept it, but I know why I felt like I swallowed a bowling ball and looked pregnant. It was nearly twelve pounds of fluid.

In the hospital, I stopped the oral chemo (it didn’t work…) I would meet with my oncologist to determine my third line of treatment. She went to tumor board with my case and settled on a hormone blocker with another oral chemo. In the meantime, to my shock, the fluid started building with days. Before I could start the new treatment, I was back at the hospital for another paracentesis. This time they drained 2.5 liters (just 2 weeks after the first procedure). 

Friday, Aug 16, I had a few more tests and a consult with the oncologist for the new meds. She entered the room with news that we were changing course. The pills she wanted me on would not work fast enough given that the fluid had came back so fast.  We needed a more aggressive treatment. She told me it was time for IV chemo again.  This was a day I was hoping would be years in the future. IV chemo is usually reserved for late in the game when more aggressive action is necessary. My oncologist assured me that I could go back to try the pill combo once I stabilize. We also discussed Foundation One testing, which could be helpful in tailoring treatments to my needs.

I left the appointment with a lot on my mind – side effects, hair loss, being tethered to weekly appointments. I packed the truck up and headed to the family lake house to relax and prepare for this next step. I missed lake time last year for the first time in my life, in exchange for 6 nights in the hospital with chest tubes, so I wasn’t missing lake time this year! It’s been nice taking a minute, but I’m ready to face the next treatment in hopes that it resolves the fluid and pain. 

img_5600

Thursday, I have a small surgery to place a port in my chest, so the chemo drugs don’t damage my veins. Then Friday, I have my first of the weekly Taxol infusions. Weekly treatments limit my wanderlust, so I’m happy we got another long trip in before starting this regime.  Let’s hope this one gives me (a lot) more time. 

Travel has taught me a lot about serendipity and changing course when needed. I trust that my doctor is guiding me in the right direction to get back on the road I want to follow. 

img_5915

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?)

Cancer-versary, Take 4

Cancer-versary, Take 4

CJ52cqOWwAA03in

Four years ago today, I heard the words “you have breast cancer” forever changing my life and challenging my limits. I’ll never forget that day. My time on this planet became more precious that day. My future became more fragile. Looking back brings a flood of emotion as I recall the experience of that moment in time, now altered by the lens of time and new perspective. I now count every year that passes as progress towards the goal of so many survivors – stay on the right side of the percentages to become a 5-year survivor, a 10-year survivor, and on and on.

Amongst cancer survivors, this date is known as a Cancerversary. There is some debate regarding which date truly represents a Cancerversary. Some choose the day they were diagnosed. Others choose the day surgery removed the tumor and they became cancer-free. Others count their anniversary as the day they complete all active treatment. For me, there are several dates that will forever stand as milestones on this journey. I mark January 31st as my Cancerversary, the day I learned of my diagnosis, a day I will never forget. I consider February 24th as my Cancer-Free Versary, the day I became cancer free with surgery. Other dates also are permanently etched into my mind; the first day of chemo, last day of chemo, end of radiation and active treatment, reconstruction surgery.

As much as I’d love to put it all behind me, being a cancer survivor has become a part of who I am. As time goes on, it tries to fall into the back recesses of my memory. Unfortunately, there are always reminders that pop into my day unexpectedly. My latest surgery is a big reminder. Pain is a reminder. Limitations on the things I am able to do is a reminder. The friendships I’ve made, the women who have touched my life in ways I never imagined, and, sadly, the friends I’ve lost serve to keep cancer’s ugly presence in my life.

January 31st never comes and goes without my thoughts turning to what cancer has taken from me, but also what it has given to me. Each year, when I reflect on the impact cancer had on my family, I’m thankful that I’ve been blessed with another year to watch my children grow. I’m thankful that my children have grown to be strong, amazing girls. I’m thankful for every year that I have with my husband. I’m thankful for each new adventure and the ability to plan new adventures for my future.

I honor this anniversary as a day that changed me deeply. I honor this day with respect and love for all of my fellow cancer survivors. Here’s to one more spin around on this amazing planet.

 

 

Perfect 10

Perfect 10

perfect 10

Okay, the image of Bo Derek from the movie “10” has nothing to do with this blog post, but it came to mind when I wrote the title, and I thought it was humorous, so there she is…. On a more serious note, this post is about re-defining what my own “perfect 10” means after the last few years and, of course, after turning 50 (loud and proud!!!) I’m also rounding out my surgery count at a perfect 10.

I didn’t learn from my last blog post, because the first big thing I’m tackling on my “50 after 50 List”, exactly one week after my 50th birthday, is surgery number TENcheck. I’m aiming for a perfect 10. I’m quietly hoping that the nice, round number 10 will symbolize my last time under the knife, but I’m not holding my breath. If I’ve learned anything in my 50 years on planet earth, it’s that life does not fit into the neat little, predictable boxes we may envision for ourselves. I won’t waste my energy worrying about how many more surgeries I might have in my future. I’m going to focus all my energy on the present surgery.

January 26th will be  surgery number ten. Guess what? It’s not the knee surgery you might have anticipated due to my recent accident, rather I’m back at it with the plastic surgeon in Chicago. A lot of people have asked me what this surgery involves. They say, “I thought you did that surgery last year.” It’s complicated, so let me try my best to clarify why I am traveling to Chicago once again for surgery – Andy and I are calling it a “destination surgery”. I know, it is exotic. We did the same thing last January, and Andy still doesn’t let me count it as a honeymoon.

I’ve had a year to recover from Phase One. I’m not gonna lie to you- I’m still not fully recovered. It was one of the tougher ones, and I’m a bit of a connoisseur. My recovery goal was to build my strength back up and get as close to “normal” as possible before Phase Two. My method for recovery was volunteering with Team Phoenix, and completing the Tri-Ing for Children’s Triathlon, and (almost) the J-Hawk Late Bird. As you know, I never made it to the Late Bird, thanks to my rendezvous with a Jeep.

By September, I was feeling strong and setting my sights on a late fall surgery, leaving time to come back in 2018 for the Madison IronMan. My surgeon in Chicago knew that I wanted to have surgery after the September 24th triathlon. Ironically, they called me just after my accident with an opening – October 13th…. With the Honor Flight on October 14th, there was no way I was going to take that date. Anyway, I needed more time to let my knee and bruising heal before going through more trauma (I’m guessing the fat grafting won’t be coming from my thigh with this bruising). It would have to wait. Next available date would be January 26th. I’m so good at hitting “new year, new deductible….

Photo Sep 20, 7 36 40 AM

ouch!

Now, I am more than ready to get on with it. So, back to what this surgery is all about. This is Phase Two DIEP Flap breast reconstruction. If you look back at my post called “Ninth One’s a Doozy”, you will get a little more background on Phase One of this process, which I completed a year ago. In a nutshell, Phase One is the major “relocating” of tissue from my abdomen to my chest to reconstruct a breast post-mastectomy. That surgery included a Lymph Node Transfer in an effort to control my Lymphedema. This is the reason I am traveling to Chicago for surgery. Very few surgeons do this surgery.

diep-flap

Phase Two involves sculpting and tweaking to try to make my DIEP flap match my other implant side. I’m not going for a perfect 10. I am hoping to be done with the awkward 4.5 I’ve been since the double mastectomy, though. People “in the know” will recognize terms such as “Ken Doll”, “Dog Ears”, and “Fat Necrosis”. These are some of the unsightly, and painful issues that can be fixed in phase two. For more on that, go ask Dr Google (actually, don’t! I just did a google images search, and it ain’t pretty). The fat necrosis is the worst. It causes me pain every day. The other stuff is just embarrassing in a locker room.

Phase 2 will also involve a lymphovenous bypass in my arm as a further attempt to alleviate the swelling caused by my lymphedema. It involves micro surgery in my arm to re-route the lymph vessels into the veins, so that the veins can carry the excess lymph fluid out of my arm. Sounds pretty cool, in theory. I’ll let you know how it feels next week.

1451510623789

I’ve said it before and I’ll say it again, “wish me luck….no….wish my surgeon luck-I’ll be sleeping.”

50 After 50

50 After 50

I’ve been working on a “50 after 50” list for over a year now. I suppose you could call it a bucket list, but I’m not planning to kick the bucket any time soon, so I prefer not to use that term. I’m keeping a list of fifty big things that I want to achieve after I turn 50 years old. My original idea was to do all fifty things in my 50th year on this planet, which would have been an amazing accomplishment, but what’s the fun in rushing. I’m here for the long haul. I am going to aim high and enjoy each and every experience on my list. Today I hit that 50 year milestone (hooray!!) That means it’s time to start checking things off my list.

My kids tease me, saying that I don’t understand what a bucket list is supposed to be. This is perhaps because I sometimes joke around, saying things like, “Cancer – I can check that one off my list”, “getting hit by a car-check”, and “one more surgery-check that off….” I know that a bucket list is supposed to be the things one wants to do during one’s life. I realize it should not contain “things that could have knocked me off”. Yet the way I look at it, all of the things we experience in this life add to who we are and what we are capable of. I’ve faced things that could have killed me, but didn’t. That’s a big deal. So, as much as I would prefer to not have to check these things off my list, they are the things that have made me strong. Moving forward, I’m certainly not going to intentionally put things on this list that might make me kick the bucket (though, I guess kite-surfing falls into that category). If they come up, I’ll check them off, nonetheless, and move on.

I thought of the idea for a 50 after 50 list after my first triathlon, back in 2015. Being a part of Team Phoenix taught me that I could re-define my life after some significant obstacles. Before that tri, I had feared that I would have to alter my goals, settle for less in life due to these setbacks. I know now that I can still aim high if I’m focused and work hard to reach my goals.

The first thing on my list is to complete an Ironman. I’m going to need to be in good shape to do some of the other things on my list, so why not start big. Ironically, the day I was riding my bike through Grant Park, I was thinking about the Madison Ironman. I was going to sign up for the 2018 race after my ride, until my ride ended unexpectedly. Then plans changed a bit. As it stands, it is uncertain if I will be able to do an Ironman, but I’m keeping it on the list for now. Maybe I’ll wait until I have a bionic knee.

In the name of keeping myself accountable, I’m going to share the first few things on my list:
◦ Complete an Ironman
◦ Show my daughters the beauty in this world
◦ Live in a warm climate
◦ Visit all of the National Parks
◦ Learn Spanish
◦ Hike the Inca trail to Machu Picchu
◦ Travel the World by Motorcycle
◦ Kite-surf
◦ Play Bass Guitar
◦ Scuba dive the Galapagos

That’s a glimpse of my list. Stay tuned to see the rest….

Honor Flight

Honor Flight

Dr Gordon had told me to call him if my knee still hurt after the swelling went down and he would order an MRI. After a couple of weeks, it was clear that my knee was not going to heal quickly. It was still swollen. I was wearing the brace, and struggling with pain, lost range of motion, and a limp. I was determined to be ready to walk all over D.C. with my dad for the Stars and Stripes Honor Flight on Oct 14th, but I wanted to know what was going on with my knee before the trip.
I had the MRI on Oct. 3rd and scheduled a follow up with the doctor on Oct 11th. Dr Gordon came in to the room and told me that my MRI “threw him for a loop.” He pushed and pulled on my knee again, just to make sure it still felt stable and that “he wasn’t an idiot” (his words). He said he never misses this type of injury upon physical examination. Yet, the MRI told him quite a different story from the physical exam. The MRI showed that I had a complete PCL (posterior cruciate ligament) tear in my knee. That can’t be good. I have experience with complete ligament tears (elbow and rotator cuff), and I know that they do not heal on their own. My first sinking though was, “one more surgery.” After all, the PCL is the strongest ligament in the knee. How can I get through life without a PCL? He did not suggest surgery, though. Instead, he said I should do six weeks of physical therapy to see if I can heal without surgery. That blew my mind a little.

While we were there, Andy took the opportunity to ask him about his foot. Right away, he told him that Andy had his least favorite injury. He said that if Andy was his patient, he would put him in a cast for 6 weeks. For now, he advised that Andy wear the boot 24/7. Andy decided to schedule his own appointment with Dr. Gordon.
Before we left, I asked him if my knee could handle a day of walking around D.C. He was fully supportive of the trip, and told me to thank my dad for his service.
By the 14th, I was feeling strong enough to go on the Honor Flight. I figured I would be able to keep up with 150 WWII Vets. I might have been wrong about that assumption, though. The day was very fast paced and we did a ton of walking. We saw all of these memorials in one day!


Arlington National Cemetery
Air Force Memorial
Pentagon Memorial
Korean War Memorial
Lincoln Memorial
Vietnam Memorial
WWII Memorial
FDR Memorial

SSHF_ALPHA_0717
I’m so glad I got the chance to go on the Honor Flight. It was one of the most memorable days I’ve had with my dad. We were pretty tired out by the end of the trip, but the homecoming at the airport gave us a boost of energy. I’ll always treasure that day.