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!!

Three Act Plot

Screen Shot 2019-11-21 at 8.08.13 AMWhen I wrote the last two blog posts my husband, Andy, kept telling me to write the third act to give hope to my readers. He is a writer and a theater buff, so he frequently talks about Three Act Structure. Really, he actually does… He says that everything always goes terribly wrong in the second act and that things resolve in the third act. He wants me to hurry up and write part three since the last two posts felt rather tragic and hopeless. I know we’ll get to the third act but, unfortunately, we have a few more obstacles to deal with in act two. 

So let’s recap where we left off. I was on a chemo regiment that worked wonders-briefly. I had a couple of weeks where I felt great, but then the cancer found a way to progress. The result was fluid build-up in my abdomen. So we spent a couple of weeks controlling the symptoms while we worked to chose the best next line of treatment (my fourth). This involved placing the PleurX catheter back in my abdomen so I can get relief at home. Thank goodness, because when they placed the catheter, they removed a whooping 5.1 LITERS from my abdomen. Now that I can control the fluid, it was time to start a new chemo combo, in hopes that the chemo knocks back the cancer again. 

I met with my oncologist, who had a list of three potential treatments. She wanted to research further and consult a colleague before choosing. On Thursday, November 14th, she had decided on Abraxane/Carboplatin, and I was scheduled to start on Tuesday, November 19th. On November 18th, I received phone calls from the hospital’s pre-auth department, our insurance liaison, and my cancer clinic. Since this chemo combo is not part of the standard of care, my insurance company would not approve the drug combination until their medical review board had a chance to review it. On November 20th, the review board came back with their decision. They would not approve the Abraxane/Carboplin combo but recommended a Carboplatin/Gemitadine drug combo. My oncologist now has the option to request a peer-to-peer review with the medical board to fight for her preferred combo or she can accept their choice. She has decided to fight for Abraxane/Carboplatin. 

We are awaiting the decision now. Waiting, in cancer treatment, is the worst part. Waiting for test results, waiting for decisions, waiting for treatment, waiting for relief. Time is precious to a cancer patient. Time off treatment is terrifying. Fear sets in. Is the cancer running rampant while we delay? That’s what it feels like to me. I’m  uncomfortable now and in pain. Will the new treatment turn that around? I have complete trust in my oncologist, and I’m confident that we’ll get on track with a treatment plan again. It’s just that the waiting stinks!! I’d like to get out of act 2 and get on to a resolution! I know my friends and family can’t wait to read Act Three. 

PleurX and a T-Rex

Rewind one year. Last fall, I started feeling like I had a bowling ball in my gut. My appetite was poor and I was generally uncomfortable. An ultrasound back in January of 2019 showed ascites (fluid in the peritoneal space or the sac around the digestive tract), but it was inaccessible to drain by paracentesis. So, I waited and hoped for relief from treatment. Last spring, the problem kept getting worse. I was starting to look pregnant and suffered heartburn, pain, digestive issues, and a major loss of appetite.  Scans showed some fluid, but nothing too concerning. In June, I managed to have an amazing trip to Seattle with good friends. In July, I took a family vacation to the west coast, but I was not well. I pushed through. The memories with my family will always come ahead of anything else. 

At the end of July, I was on another camping trip with my family and friends for the Team Phoenix annual triathlon. I was miserable. I had to tell everyone to go ahead without me while I let the pain pills kick in. If this triathlon hadn’t been such an important event in my life, I would have gone to the ER right then. But the pain pills helped and I made it through the triathlon to cheered this year’s athletes to the finish line. Somehow, I packed up camp (with a lot of help) and headed home. The next day, I was packed and ready to go to the ER. CT scans clearly showed a lot of fluid had accumulated, confirming what I knew all along. The ER doc gave me the choice to leave and arrange a paracentesis with my oncologist, or to be admitted and have the procedure the next day. I couldn’t stand it anymore, so I was admitted. I made the right choice, because by bedtime, I couldn’t eat, I was throwing up, and I couldn’t get comfortable sitting, laying down, standing or anything. 

What is a paracentesis? Well, it starts with a “Little pinch and a burn,” something every doctor says (I swear there must be a course in medical school entitled “a little pinch and a burn…) as they push the needle gradually deeper into the abdomen with a numbing agent. It hurts. After the needle is withdrawn, a catheter remains in place and the tube is connected to a vacuum sealed bottle which draws the fluid out. They were able to draw 4.2 Liters of fluid, and the relief was immediate. It did not last, though. Less than two weeks later, I had to have another 3.8 Liters removed. The doctor told me that each liter of fluid weighs 2.3 pounds. And, interestingly, it is spot on. I’ve weighed myself before and after each procedure and the weight loss confirmed the amounts. 

The fluid build up signals cancer’s progression. It was time to switch to a new line of treatment. This time we decided to go with a more aggressive IV chemo, and I was scheduled to have a MedPort inserted to make the chemo infusions easier. At the same time, I could feel the fluid building up again, so I called my oncologist to ask if I could have another paracentesis while I was in surgery for the Port. It had been less than a week since my last paracentesis and the fluid was accumulating faster that any of us anticipated. My doctor decided to put in an order for me to have a PleurX Catheter (a tube that remains in place to make draining easier) placed into my abdomen during Thursday’s surgery. My understanding was that they could drain it during surgery, and then I would be able to better control when to drain it at home, instead of waiting for appointment after the symptoms have gotten so bad.

The PleurX turned out to be a good idea, and I was draining 2 Liters every other day for several weeks while the chemo took time to build up in my system. Then a welcome thing happened. Around the 3rd week into chemo, I started getting less fluid when I drained, until there was barely a trickle. My symptoms resolved as my stomach flattened back out. The chemo was working! After nearly a month without any sign of fluid accumulation, it was determined that the PleurX could come out. 

Now they say hindsight is 20/20 and it’s never worth second guessing past decisions, but it soon became clear that we shouldn’t have been so quick to take the catheter out. My relief from symptoms only lasted a couple of weeks and then the fluid started to build with a vengeance. I knew this was bad news. My oncologist does not have a good poker face, and as soon as I saw her I knew it was bad. The cancer had stopped responding to the chemo. She ordered an ultrasound and confirmed that I needed a paracentesis. This was a difficult blow for me. I had just started feeling good for the first time in months. And I had grown accustom to the ease (and painlessness) of draining with the PleurX. I was devastated when they told me to schedule the procedure immediately. 

I was scheduled for the procedure on Halloween. I was dreading it and spent the day prior in tears, fearing the painful procedure. Andy did his best to comfort me, but he too knew the implications of having the fluid come back so fast. The mood was dark. The day started to turn around for me when I got to the hospital. The mood was festive for Halloween and the talk was all about the unusual Halloween snow storm, trick or treating and candy. By the time I got into the procedure room, I was feeling less anxious, almost relaxed. The nurses were amazing and we had great conversations about travel and life and kicking cancer’s ass! After the “little pinch and the burn”, the procedure went smoothly and I felt much better. After it was done, they asked if I wanted a dinosaur escort to back to the waiting room and my loving husband. I immediately jumped on that and said, “heck yeah, who wouldn’t want a dinosaur escort?!” The nurse struggled and squirmed back into her T-Rex costume and we made our way through the halls. It was the best walk down a hospital corridor I’ve ever had. People smiled. Heads turned. High fives were given (which is funnier than you would imagine with short little T-Rex arms). It’s amazing how the little things can do so much to turn a mood around. I ended up having a good Halloween after all. 

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I am Not my Hair- Take 2

I am Not my Hair- Take 2

Everything I read about Abraxane, my current IV chemo, says that hair loss starts around the third dose. Last Tuesday was my third treatment and, sure enough, a couple of days after the infusion, I started shedding. It’s hard to describe the sensation. It’s a tingly, itchy feeling. It feels similar to the way your scalp feels if you part your hair in a new place, or leave a ponytail in too long. If you know this feeling, it just feels wrong. 

  Photo Sep 17, 8 40 15 AM   Photo Sep 22, 4 01 40 PM   Photo Sep 22, 4 25 37 PM

 

We started with an undercut, just in case it wasn’t all actually going to fall out. I let Alyssa make a heart with the electric shaver. I kept it like this for about a week.

After the 4th treatment, the shedding and odd sensations became even more pronounced, so I knew it was time to do something more drastic. That something, this time around, would be a purple mohawk. I guess it’s tradition. In 2014, when my hair started coming out in clumps from my first run through chemo, I decided to put the electric shaver in the kids hands and have some fun with it. That time, I was determined to hit cancer hard and never look back. I dealt with the hair loss as a temporary situation to reclaim my health. 

This time around, it has a different meaning to me. The hair loss is insignificant compared to the improvement I sense in cancer’s symptoms in my abdomen. The first time around, I never had any symptoms to indicate cancer was developing. I was strong and healthy before my diagnosis. This time, I have been suffering from various pains, and the accumulation of fluid in the peritoneal lining (the lining surrounding the digestive tract). The chemo has significantly reduced the amount of fluid, my appetite is coming back and I’m starting to feel better. So I don’t care so much about the balding head (except that it’s cold!). 

Thursday night, I decided it was time to dig out the shaver again. I got some pizza and put on the Packer game and we proceeded to shave it off. Ironically, it took me a couple of years after the first chemo to leave my hair alone and let it grow out. I was just beginning to like the length.

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But that isn’t really relevant. The girls decided that Kaylei would do the rest of the cutting and Alyssa would dye it purple.

Friday, my buddy Crystal brought over lunch and we spiked up the mohawk and then cut it down to a more manageable height. My brother and sis-in-law dropped in to witness the beginning of the mohawk! We’ll see how long I can stand the tingly, itchy feeling. I’m thinking pretty soon it will be time to buzz it all off. I’m collecting warm, fuzzy hats now. Winter in WI is not the best time to be bald…

sue n cathy

If I’m going to sport a purple mohawk, I better go bold.

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Soon, I’ll be able to make a new “hair raising” video!!

 

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.

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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. 

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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. 

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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?)