Cancer-versary, Take 4

Cancer-versary, Take 4

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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.

 

 

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….

Friday, the 15th

It was Friday, September 15th. I woke up feeling great. I drove the kids to school, and then back home to get ready for my morning bike ride through Grant Park. I smooched my husband a bit (we’re newlyweds) and tried to get him to come biking with me. He’d been struggling with foot pain all summer, so he didn’t want to join me. As I was getting ready to ride, I told him, “that’s it, I’m taking you to a clinic today to get your foot checked out….”

“AFTER my bike ride.”

Andy is the kind of guy who takes care of everybody else first, and doesn’t want to complicate things by imposing his own problems into the mix. He has taken such good care of me through so much, and I want to be able to do that for him, too. Sometimes, I have to force him to let me take care of him. I had to get him to the doctor. His foot pain had gone on too long. Nothing was going to prevent me from biking on a morning like this, though. It was an absolutely ideal morning for a bike ride. The temperature was in the 60s, there wasn’t a hint of wind, and the blue skies were perfectly clear. I’d get home before the clinics opened, anyway, and then I’d get him to a doctor.

I put on a long-sleeved shirt and biking pants, but decided not to wear my bicycling shoes that clip into the pedals, because they’ve been making my feet go numb when I ride. Instead, opting to wear my running shoes. And off I went. My favorite part about living here is the fact that we are right on the parkway off of Grant Park, which gives me over 20 miles of beautiful, off-road biking paths right at my doorstep. Being a part of Team Phoenix has re-ignited my love of bicycling, and my morning ride through Grant Park has become my favorite way to start my day strong. I ride early, so I often have beautiful Grant Park to myself. I get to enjoy the sun rising over Lake Michigan, fresh morning air, and I usually see wildlife. I use this time for morning meditation. It has become a rejuvenating part of my life.

It’s been a long recovery from my DIEP flap surgery in January. I’ve been in pain, and haven’t regained my full strength or mobility. I was getting stronger all the time, though, between my regular swimming and biking. In one week, I would be doing my second sprint triathlon of the year with my two daughters. The first triathlon was at the end of July, and I almost dropped out of it. I pulled a muscle in my back in early July pulling a weed out of the ground. Something had to give, and it wasn’t going to be the weed. The muscle in my back snapped so hard that my knees buckled and I fell to the ground. After an ER visit, rest, ice, and ibuprofen, I was back to swimming and biking, but not ready to run. I did not feel ready to do a triathlon, but my family and friends encouraged me to stick with it, and I did it!


That morning, I was feeling particularly good. For the first time since surgery, I felt ready for the upcoming triathlon. As I made my way through the park, I was reflecting on how far I’ve come since my cancer diagnosis. I felt strong and fully in sync with my bike as I sailed effortlessly across the winding path. It reminds me of a feeling I get as a motorcyclist, when I’m so in tune with my bike that it becomes an extension of me. It is a liberating feeling. My muscles control the bike subconsciously, leaving my mind and body and all senses free to fully immerse in the surroundings. That was the state of mind I was in and my thoughts turned to my up-coming goals. I’ve been keeping a “50After50” Bucket List of 50 big, high reaching goals that I want to achieve after my 50th year on this planet. Think Big. Aim High! I was feeling strong and had decided to sign up for the 2018 IronMan in Madison. I had watched my niece, Tamra, and some of my Tri-Faster and Team Phoenix friends do the IronMan this year, and I wanted to experience it. I’ll need to be strong to tackle some of the things on my bucket list (kite-surfing, hiking the Inca trail, hitting all of the National Parks, exploring the world on my motorcycle)! What better way to prepare?

My goal this summer was to have a strong recovery from DIEP surgery and go into the second phase of surgery strong. The plan was to do the triathlon on Sept 24th, accompany my dad on a Stars and Stripes Honor flight on October 14th, and then tackle the next surgery in November, so that by 2018 (and my 50th birthday!) I could hit the ground running and live big.

All of these reflections were in my mind as I came up out of the park, nearing Cudahy, where the bicycle path crosses the entrance to a parking lot. As I approached the driveway, a Jeep was coming out of the parking lot. I slowed way down as the Jeep came to a stop at the stop sign. I did what I always tell my kids to do. I say, “Never assume the driver is going to see you. Always make eye contact.” I paused and looked at the driver. I even said out loud, “Do you see me? Are you stopping? You are stopping, right?” And I proceeded to cross (at the marked crosswalk).

He did NOT see me. It seemed surreal, almost like he intended to scare me. He suddenly hit the gas, but surely he would stop again before he got to me. Then he hit the gas again and soon his big, white Jeep was riding over my bike, with my legs tangled under the bike frame. I was thrown to the concrete-Hard.

Book Launch Event

I am thrilled to announce that I have turned this blog into a printed book. In addition to my book, my husband, Andrew Pain, has written a book about his experiences as a “caregiver” on the sidelines during my cancer treatment. Both books are now available for pre-order, and there will be an event on May 6th at 7:00 at our favorite local coffee shop. Please join us for coffee, discussion and a chance to have your books signed.

Nip, Tuck

Nip, Tuck

The last words I ever expected to cross my lips were “I just had plastic surgery”. But there it is. I just had plastic surgery. I am not a vain person, I don’t wear make-up or fuss with my hair or clothes or my appearance in general. I had considered not doing reconstruction at all, but I am just self-conscious enough to want something there, so I can change clothes in the locker room without embarrassment. Yet, for me this surgery marks the end of this journey battling cancer, and somewhat of a return to normal.

I arrived at 11:00 on Monday for pre-surgery preparations. Surgery was scheduled for 12:30, but the surgeon was behind schedule so I had extra time to sit, hungry, craving my morning coffee, and worrying about the surgery. My boyfriend, always there to cheer me up, put adorable kitten videos on his phone to help pass the time. It worked, and before long, I was all ready to be rolled off to the operating room.

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Because I had lymph nodes removed on both sides, I am not supposed to have IVs or blood pressure cuffs on my arms. I convinced them to do the blood pressure on my leg, but they would not do the IV in my foot, so I had an IV on the left side, which had fewer nodes involved. It hurt like crazy going in because my chemo-weakened vein tried to run and hide. She eventually got the IV in place, and pre-surgery meds started flowing. As with every surgery, I begged the anesthesiologist not to make me sick. They always give me the works to prevent nausea. Antacids, motion sickness patches, anti-nausea meds, but it never seems to work. I always end up sick to my stomach. So that happened. Again.

The plastic surgeon checked in on me and drew lines all over my chest and stomach while I could still stand up. Apparently, they don’t want to make the lines after you are unconscious, flat on your back. Once that was done, they wheeled me off to the operating room right in my recliner. Entering the OR, I said, “I see the party has started without me, and just as I expected, brightly lit and cold”. There was some lighthearted joking around, then they wanted me to get as comfortable as I could on the operating table before they completely knocked me out. I felt relatively comfortable, with my arms straight out at my sides, airplane-like, so the oxygen mask was placed over my nose and mouth with instructions to take deep breaths. Nighty night….

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Next thing I remember, vaguely, was coming to gradually in the recovery room. I heard Andy’s voice and the nurse telling me something, though I don’t remember any of it. I noticed at that time that my left hand had fallen asleep and was tingly. Apparently, they got me up and dressed. It was late in the day and everyone was anxious to get home. I was the last one on the floor for the day. I was becoming more and more alert, and I wanted to go home. That’s when the nausea hit. I got sick, which made me feel better, but then they took away my crackers.

Feeling better, they got me up to walk to the bathroom. I felt weak and lightheaded, but managed ok. Until I had to try to pull my pants up. My sleeping left arm was not working. This made me panic. I feared the worst-they paralyzed my arm. I would never have traded use of my arm for new breasts. A future without the use of my arm horrified me. I have big plans for my future, and most of them involve physical labor (rehabbing houses) and motorcycles, and a generally active and adventurous lifestyle. What would I do with one arm? And that was my “good” arm, that hadn’t endured multiple surgeries.

This new problem delayed everyone’s departure for the day, but eventually, I was wheeled out to the car and sent on my way to recover at home. I managed to sleep fairly well that night and most of the next day. I did speak to the surgeon and the anesthesiologist about my arm, and they reassured me that it is temporary and I should expect to regain use of my arm over the next two weeks. The specialist they spoke with says it happens sometimes, when the arms are stretched out for an extended time. They think the nerve was over-extended or pinched due to swelling. Maybe the IV in my arm also caused the problem. So, I just have to wait and see. If it isn’t better in two weeks, I’ll have to see a specialist. Now, it is three days later and my arm is still numb and tingly, but I am regaining some movement, which is reassuring.

Besides the arm issue and the nausea, the surgery went well. There was a bit of skin that was so damaged from radiation that it had to be removed, though, so the scar may be bigger than I thought. I am tightly wrapped in gauze, with a tight girdle-like piece wrapped around my abdomen. I have to keep this all wrapped up until next Tuesday, when the plastic surgeon will remove the dressings, and expose the end result for me to see.

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.

Respite

Respite

I have spent the last month attempting to keep all things “cancer” out of my mind. Apparently, that included posting to this blog, as I realize it has been over a month since I’ve updated everyone who follows me here. Cancer treatment is a long road and can consume all of one’s time, energy and thoughts. Clearly, it is a road worth taking, but like any long journey, sometimes it is necessary to step back and gain a different perspective before continuing. This month long break between chemo and radiation was just the respite I needed in order to rebuild the strength and determination I need to finish stomping cancer out of my life.

The last round of chemotherapy brought some challenges, but my focus in July was to push through and enjoy as many fun summer activities as possible before the start of radiation, which will impose some limitations on me.

I think I did fairly well during this break in treatment. My returning energy levels and diminishing side effects allowed me to take a couple of camping trips (one by motorcycle), I did some hiking, spent a week at the family lake house, attended state fair (I even went on a couple of rides), and hit some outdoor music festivals. Sadly, I was unable to participate in the Riverwest24 (a great neighborhood 24 hour bike race), but I was able to observe the event as a spectator, which gave me an opportunity to see friends and share the event with my kids. All of this was punctuated by weekly doctor appointments which served to remind me that I’m not over this yet.

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By the end of July, I had a final appointment with the medical oncologist, during which she told me that I was doing great and my blood work proved that I was ready to move on to radiation. She passed me on to the Radiation Oncologist, with whom I met on Friday, July 29th. He seemed confident that I would tolerate radiation without problems. He assured me that it would be a breeze compared to chemotherapy. I was told to expect fatigue, and localized damage and burning to the skin at the site of the radiation. I was also told to stay out of the sun and no swimming. This was, perhaps, the hardest pill to swallow, as August is my favorite month specifically because I love hot weather, the feel of the sun and swimming (things that are cruelly limited in Wisconsin). After the meeting with the doctor, I went in for radiation mapping. The mapping involves a CT scan, lots of measurements and small tattoos to mark the precise location where the radiation will be targeted. After this appointment, I was scheduled to start radiation on August 6th, which allowed me one more weekend to escape.

I took the opportunity to combine two of my favorite things for the first time. Motorcycling and camping. Both are also a huge passion of my boyfriend’s – so much so, that he has several books on the topic (traveling250.com for more). We had a campsite reserved north of WI Dells, but a last minute change allowed us to meet up with some of Andy’s friends, an Australian couple traveling the world by motorcycle. Their travels brought them to the EAA fly-in in Oshkosh, so we left Milwaukee a day early so we could join them. It was my first time to the fly-in. I was completely blown away by the magnitude of the event.

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The ride took us through some significant storms and we arrived, late, to a soggy campground, where we had to set up the tent in the dark. It was worth it, as we got to share some wine and travel stories with some fascinating travelers well into the night. The following day, we walked all over the elaborate grounds of the EAA, attempting to squeeze way too much into too little time, as we wanted to leave early to beat the rain to our next campsite. We didn’t quite make it, and we arrived at Roche-a-Cri state park just as the hail hit. The ranger let us hang out in their shelter until we got a clearing in which to set up camp and cook dinner. The next two days were beautiful and we filled our time with hiking, relaxing and a couple of motorcycle meet ups with a group of friends, which took us through the dells, and a trip on the Merrimack ferry on the way home Sunday.

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Back to my current reality after the camping trip, I went back to the hospital (Andy wouldn’t let me run away and extend our trip indefinitely…). Wednesday, August 6th would be my first day of radiation, which actually involves simulating the treatment with x-rays and further measurements and fine tuning to make sure everything is correct before administering the radiation. It was torture! Still not properly healed from rotator cuff surgery, I found it extremely difficult to lay still with my arms up over my head for such a long time. First, my arm went numb. Then it progressed to pain, then my arm started to shake from the pain, at which time I was reprimanded for moving and told that if I wasn’t completely still we would have to start from square one again. That was enough to make me push through, but I was nearly in tears by the end and not sure I would be able to hold this position 33 more times (yes, 5 days a week for 6 and a half weeks). They told me that the simulation would be the longest one and that subsequent sessions would not be that bad, so I went back again on Thursday to start radiation. Again, there was some fine tuning and double checking, and my arm went numb again, but did not have time to progress to pain by the time it was over. Friday was shorter yet, and my kids were with me, so they got a chance to see what I would be going through, which removed some of the mystery for them. They got to see the machine that gives their mom super-powers. And they got chocolate. What more could you want?