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 After the needle is withdrawn, a catheter remains in place and the tube is connected to a vacuum sealed bottle which draws the fluid out.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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Phoenix Rising

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In 2015, I did my first sprint triathlon shortly after completing cancer treatment. It was a clear, redefining moment in my life that I will always cherish. Next weekend, this year’s group of courageous women will complete a triathlon. As a Team Phoenix athlete, and now a volunteer for the team, I am inspired every day by the powerful changes that the women of Team Phoenix undergo as a result of this remarkable program. Please consider donating to show your support and help many more women experience this transformation. #phoenixrising #TeamPhoenixStrong

 

Livestrong

Livestrong

As of Tuesday, I am a graduate of the Livestrong program at the YMCA (I even have a certificate!). Livestrong is a 12 week program designed to help cancer survivors achieve their health goals. I would highly recommend the program to anyone just finishing cancer treatment, unsure about how to rebuild after the difficulties they’ve just faced.

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While I still have a ways to go to regain the strength and fitness level that I had prior to cancer treatment, I feel like it was an excellent way to start. Participants in the Livestrong program get a free Y membership for the duration of the program, too. My class met twice a week, and it was just the push I needed to get off the couch and hit the gym. It was extremely difficult to find the motivation, and the energy, to exercise during chemo and radiation, but having a class to look forward to was an excellent way to get me out of that mode.

I’ve always had a physical lifestyle. I love jogging, biking, swimming, hiking, playing sports, and on and on. But I’ve never been terribly interested in “classes”, or group exercise. I have to say, there was something invaluable about being part of this group exercise program, though. For me, it was less about the exercise, and more about the camaraderie I found in a group of women who had recently gone through the same treatments and challenges that I had. It was the opportunity to talk about our experiences that motivated me to go every week. My group was very small, only 3 of us came regularly, and we grew comfortable talking about some personal stuff. It became like an intimate support group ( another thing I’ve never really been interested in). We were there to encourage each other and cheer at our small successes.

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Over the 12 weeks, we tracked our progress and did a baseline and post-class assessment of our progress. I’m proud to say that I improved in the areas of endurance, strength and flexibility! I hope to keep working toward my goal this winter. One more hurdle to clear, with surgery imminent, but after that I’m on track to join Team Phoenix at Aurora next spring! (more on that in future blog posts…)

Now What?

I realize that it has been nearly two months since I updated my blog. Don’t worry. I am still here. I still have a lot on my mind, and have been meaning to write, but the urgency to write which I felt before has let up some. In the thick of things this past year, I felt a strong pull to put my thoughts to paper. Writing was the only way to sort out the complex jumble of thoughts and fears, and dig for some sense of peace with what I was going through. Now, as I continue to move forward, I don’t feel the same pressing sense of urgency to put my thoughts to paper, so maybe you’ll hear less from me. Maybe….

The completion of radiation in the end of September marked the end of active treatment against cancer for me. For 10 months, this vigorous battle dominated nearly every aspect of my life. The abrupt change from constant doctor’s appointments, major side effects, and a underlying, ever-present focus on whipping cancer, to a return to… “normal” life, left me thinking, “now what?” Where do I go from here? So much has changed.

The important things in life are that much more important now. The unimportant things in life are that much more unimportant now. Facing fears, and pain, and setbacks seems to be a regular part of every day, yet I have new goals. Some are previous goals that have been neglected. Some are new goals. Life is too precious, and there are no guarantees that I’ll be around long enough, to put off the hopes and dreams I have for my life. What all of this means, I am not sure. But I am excited to find out. Excited to move forward.

Though I sometimes feel manic excitement to jump head first into this new chapter, waste not a single moment, I also realize that it will take time. I don’t have the strength or the energy that I used to have. I see glimpses of my old strength at times, but only glimpses. It seems that I can’t complete the tasks that I set for myself in the time I think I should be able to complete them. It frustrates me. I don’t have time for the patience of my younger self. I know that I need to learn, for now, to take on less, slow down, do things at a reasonable pace. Balance.

I have one more major hurdle to clear on this journey. Two weeks from today, I will be undergoing reconstruction surgery, along with the removal of my chemo port. I look forward to getting it done, or, rather, to getting it over with. In fact, I pushed the doctor to let me do it before the end of the year because I want this chapter to close with the end of 2014.  I am not looking forward to another surgery, another recovery, another pause from the things I want to be able to do.  I can say one thing with certainty, though – look out 2015! This New Year has new meaning and I am going to come on strong!

Comedy of Broken Pieces

Enough already! The past week has been one problem after another as my body breaks down from the strain of cancer treatment. It’s like the classic example of the driver, breathing a sigh of relief as they near home after a long drive, and then, minutes from home, they get into a car accident.

I was breathing that sigh of relief near the end of radiation, ready to be at home with a new chance at life. I am more than ready to done with doctors and hospitals and all things cancer. My body tells me otherwise. The effects of treatment keep popping up to remind me that I can’t move forward as if nothing happened. It is going to take more time and effort than that.

Monday I met with a specialist to try to find a solution for recurrent UTIs, which are exacerbated by chemotherapy-induced menopause. Tuesday was my final day of radiation, a milestone worth celebrating, to be sure. I brought a dozen donuts to St. Luke’s radiation oncology department. It was a lovely day, and I was thrilled to be done with the 7 weeks of daily trips to St. Luke’s. There were plenty of hugs and high fives. My skin seemed to be over the worst of the burns, and I was starting to heal, feeling like I was nearing the end of the long road.  I received a wonderful bottle of wine from a friend, so there was further celebration that evening.

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Wednesday I had a follow-up with the medical oncologist. Everything was looking good. Fatigue was my only complaint, yet initial blood work was showing improvements over the dropping numbers caused by chemotherapy. There were more congratulations and hugs. I donated my hats and scarves further symbolizing the end of that chapter. On my way out the door, beaming and ready to ride my motorcycle home on a beautiful fall day, the nurse stopped me and said she needed to talk to me…

Back into an exam room I went. The nurse came in to inform me that my blood work showed an elevated level of troponin, an enzyme that is released when there is damage to the heart. It is found in people who are having heart attacks. It also can occur if radiation stresses or damages the heart. So, having told me this and asking if I had any chest pain or shortness of breath, they sent me on my way with instructions to rush to the ER if I experienced any symptoms of a heart attack. NOT a reassuring thought as I strapped on my helmet and climbed onto my motorcycle for the ride home. I felt every beat of my heart on that trip.

As everything else on this road, the “not knowing” period is the worst part. Left without details, my imagination takes over and fills in the knowledge gap with worst case scenarios. In my mind, I beat cancer but surely would need a heart transplant or other extreme measure to survive the effects of the cancer treatment. The cardiologist called and I was scheduled for a heart echo-cardiogram on Friday. I do not like Friday tests. They usually mean I get stuck, waiting with my imagination, until Monday to hear the results. Thankfully, I got the call Friday afternoon assuring me that my heart was stable. Phew.
NOW, certainly I was done with hospitals and doctors for awhile. I looked forward to the upcoming weekend and a visit from a dear friend, Rania, and her boyfriend. I also was anticipating a possible road trip with my boyfriend with excitement. But (since it wouldn’t be November with orthopedic surgery) on Thursday, I had a recurrence of a sharp pain in my knee. I had already seen the surgeon for the knee pain earlier in the month and had x-rays and an exam. The next step was to have an MRI. I scheduled it and went on with RICE (Rest, Ice, Compression and Elevation), and went forward with fun plans for the weekend.

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I spent a wonderful weekend with friends, reminiscing, riding motorcycles, eating out and toasting the end of cancer treatment. Then Sunday night, the neuropathy that was finally almost gone from my left foot, came back with a vengeance. By Monday morning, my left foot was terribly swollen and painful, making it difficult to walk. I scrambled around to try to see the orthopedic surgeon asap and attempted to move the MRI date up. The surgeon didn’t want to see me until he had the MRI results in, but I did eventually get the MRI rescheduled and a new appointment to see the doctor.

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Now it is Tuesday morning, the day of the MRI. I am able to put a little more weight on my foot, but I’m still limping quite a bit. I called around to make sure nothing implanted in my body contained metal (a no-no in MRI machines). The chemo port checked out MRI safe, the IUD also was okay. Then I spoke with the surgeon’s nurse about the tissue expanders (as I affectionately call them – boob placeholders). Tissue expanders have a metal port in them which the doctor uses a magnetic on to locate the port when injecting saline. NOT MRI safe…

The beautiful weather we had all weekend left with a drastic cold front yesterday, I struggle to walk without pain, I can’t have an MRI to determine the cause of my knee pain, I’m exhausted, disheartened, and my boyfriend is leaving tomorrow for a two week trip that I had hoped to accompany him on. I’ve had better days. I am ready to move forward, get my health back, get in shape, yet, here I sit, looking around at broken pieces.

Healing Henna

Healing Henna

I can’t go so far as to say that I am glad that cancer came into my life. What I can say is that I am fully embracing the healing journey that this life experience has plunged me into. I can also honestly say that some of my happiest moments have come to me as a result of this experience. I’ve made deeper connections with people with whom I may never have crossed paths with otherwise and they’ve brought so much to my life.

I face round five of six chemotherapy infusions today. Previous rounds have involved a pre-chemo margarita with friends to prepare myself for the rough patch that sometimes follows an infusion. However, this time, I decided to make use of the fresh mint proliferating in my garden to make mojitos with my friends. This was also my way of thanking those who helped me whip my backyard gardens into shape (see Victory Garden). I also invited a friend from the neighborhood to join us and do henna tattoos for everyone, with the finale being a full henna tattoo on my bald head.

We made our mojitos and enjoyed a cookout while we watched in amazement at Anita’s talent as she created her beautiful art on our bodies. Her true talent shines through in the flawlessly smooth strokes she uses to create her art. She started with the kids and, somehow, through her brief conversations with them, and nothing more than the images that she envisions in her mind for them, she created unique designs which seemed to perfectly suit each kid’s personality. I am absolutely amazed at this talent!  See more of her work at Hands of Henna by Anita.

Towards the end of the evening, as all the other tattoos were completed, Anita had a wonderful suggestion. It was nearing 10:30 (on a school night), and she mentioned that she did not want to rush my tattoo, but rather go to the beach the following day to work on mine. I love the beach, so this sounded perfect to me.

It couldn’t have worked out better and the experience of tattooing my head on the beach will always have a special place in my heart. We chose my favorite time of the day to go to the beach. It was a beautiful, clear, sunny morning and the sun was sparklingly beautifully off the water. We found a great spot in the warm sand to spread our blanket, close to the water so we could hear the soothing sound of the waves gently lapping on the shore. We set up Pandora to play world music, and I settled in comfortably on the blanket, feeling the sun on my skin, and perfectly relaxed in a kind of meditation. The feel of the henna going onto my head, with the backdrop of the music and the waves and the feel of the sun, was incredibly soothing, reminiscent of a scalp massage.

We spent the next two hours in relaxed conversation. I’ve know Anita for years, but only casually from living in the same neighborhood, and having some mutual friends. This was the first time we really spent a solid chunk of time getting to know one another. It was a really special moment. We spoke of our love of travel and passion for living fully. We also shared our experiences with life changing events. I attempted to express how cancer has changed my perspective on how one goes through life, and Anita shared her experiences recovering from a life changing accident. We talked about how to raise our daughters to be strong, independent people, and how to involve them in travel more to expose them to the variety of cultures on this planet. It was a really wonderful experience, and all the while, Anita created a beautiful work of art on my head. It’s one of those moments that I never would have enjoyed had cancer not entered my life, so for that I am grateful.

After finishing the tattoo, it would be the first time venturing out of the house without the concealing protection of a hat, though the tattoo was, in a sense, a beautiful head covering which allowed me to walk around with a feeling of confidence. I received a lot of compliments when I picked the kids up from school. The first question people asked was if it hurt until I explained that it was a temporary henna tattoo. My kids’ classmates were the best, because kids have that uninhibited way of wanting to see new things and learn. Some thought it was a wild haircut, others wondered what it was, but they all thought it was really cool. Adults asked questions too, but with a little more reservation.

All in all, it was a perfect way to get myself mentally prepared for another round of chemo. I need to make sure the positives of this experience outweigh the negatives. There are definitely moments when I just want to have all of this behind me. But since I can’t control that, the least I can do while I endure the treatments is to create wonderful memories that I will cherish as I put this experience behind me. So far, so good.

A Bicycle, a Motorcycle, and one Margarita

A Bicycle, a Motorcycle, and one Margarita

With the pain of shingles a fading memory, I was back. Feeling ambitious, I was looking for a few fun things to do over the weekend before “spa day” numero tres tomorrow. Friday saw decent temperatures and I was feeling strong, so I decided to see how it felt to get on my bicycle. It’s important for me to stay as active as possible throughout chemo, and since my indoor exercise bike is not all that exciting, especially after a winter like this, I was beyond ready for some outdoor exercise and fresh air!!

A bit uncertain about how my upper body strength would handle the bike, I started out cautiously. That didn’t last much beyond the alley, as I was feeling strong and confident. Comforted by Andy’s encouragement, I felt like I could ride without any problems. It felt wonderful pushing the pedals through Estabrook Park. I made my way comfortably to a favorite spot along the river, where the rapids were flowing with that soothing sound that rejuvenates me. We sat at the overlook by the beer garden (no, it’s not open yet, but I will be there as soon as it is… who’s in? Melissa? Marty, with your cold, spring birthday parties?), taking in the sunshine and the scenery. We got a nice walk along the river before getting back on the bikes to head home. These are the things in life that are the healing moments for me.

The bike ride felt so good, that I decided to skip the baby steps. On Saturday, I got the motorcycle out of the garage. Cautiously at first, again, until the end of the alley, and again, with Andy there in case I needed help, it felt remarkable to get back on the bike!! Andy was a little worried, and wanted me to go up and down the alley and leave it at that, but that didn’t sound fun at all, so we decided that a ride to the new Sprecher restaurant at Bayshore to meet his mom for lunch wouldn’t be too far for a first time out. I felt so good, that I couldn’t stop smiling and bouncing up and down every time we came to a stop light! After lunch, we headed to the lakefront for a cold photo-op near the water.

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Getting on my bike was a huge milestone for me. When I first heard my diagnosis and the dizzying array of surgeries and treatments which I would be enduring, I did not think I would ride my motorcycle until the fall, if at all in 2014. I had plans for weekend motorcycle trips with friends that would have to be postponed. This made me very sad, because being on the bike is my throttle therapy!! It always cures what ails me and provides me with such joy. The thought of leaving the bike in the garage all summer was even more depressing than a cancer diagnosis.

I am committed to getting stronger through this, continuing to do the things I love to do! Now I feel confident that my goals are not out of reach.

Oh yes, and I can’t forget the one margarita, which I had on Sunday.

Here’s to hoping that the third verse is not the same as the first!

one margarita

one margarita