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.
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.
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….
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.
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.
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.
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.
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.
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.
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.
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.
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?
Tuesday, July 1st was my last round of chemotherapy! A huge milestone, no doubt, and I am happy to be able to say that the experience of chemo is behind me. Never again (I pray) will I have to sit for hours with these chemicals coursing through my body. But, I’m not cracking the champagne yet. Realistically, it is merely the last hurdle in an event that is not yet finished, and there are additional events still looming on the horizon for me. As in track and field, the last hurdle needs to be taken cleanly and the runner still needs to land firmly on their feet and sprint across the finish line.
With the hurdles behind me, the final sprint is proving more difficult than I had imagined. I have cleared many hurdles and fought for my strength between them, seemingly just in time to clear the next hurdle. But the cumulative effect of the hurdles, chemo with its side effects, has left me weak. I was prepared, mentally, for the last round to end on July 1st, but that is just the first part of the last round – I still need to land and make it to the finish line. The drugs, along with their debilitating side effects will remain in my system for another four to six weeks, at least. I did not mentally prepare myself for that, and then, yesterday, that reality made me falter.
Going into the last round, I was already anemic, on the verge of needing a blood transfusion, and profoundly fatigued. I guess I had prepared myself to breathe a sigh of relief and move forward at this point, but the side effects hit me hard again this time, throwing me off balance.
Physically, I have never felt weaker. Small tasks sap any remaining energy I might have been able to summon. I have to stop to catch my breath halfway up a flight of stairs. The long list of things I want to do each day seems insurmountable. Digestive problems have made it difficult to eat properly. Nothing tastes right, and my appetite is off. If I chose to eat the wrong thing, I become extremely ill. I also find it really difficult to keep hydrated, which further weakens me. Body aches and bone pain make getting around a struggle, too. Lately, I have been sleeping, hard, for fifteen or so hours a day, and it’s still not enough. Unfortunately, each round requires steroids to lessen the side effects, and with that, disruptions to the sleep I crave. Without sleep, and nourishment and water, I am finding it hard to rebuild the strength I need to cross the finish line.
Emotionally, it is taking a toll on me, too. I was not prepared for the physical effects of the final round, nor their effect on me emotionally. Chemo throws the body into sudden menopause, with its accompanying emotional moments. This week, the sleeplessness, chemo-pause, dehydration and negative external forces have been more than I was ready to handle. This weekend has been particularly hard for me and a low point on this journey.
It is the Fourth of July weekend. It is perfectly beautiful summer weather, yet I feel like I’m in someone else’s surreal life. It feels like a haze is over me. Surely, I did not just go through chemotherapy. This can’t be my body struggling to do simple things. None of it seems real. I am sad to be missing the usual celebrations that I have always shared with my kids on this holiday. There will always be an empty gap where there should have been more. Andy, who has been there for me when my own strength waivers, reminded me that missing this year’s memories to focus on getting healthy will ensure many more years of memories to come. I have to keep that thought clear in my mind when I’m feeling down. My priority right now has to be on my recovery and health, so that I will be here for all of the happy memories to come in my future.
I have a month to get back on track, rebuild and recover from the hurdles of chemotherapy before tackling my next event – radiation. I’m confident that I will be ready. Today is a new day, and I feel like I am back in my own life again and ready to reach the finish line.
It may be a bit premature to declare victory over cancer. I am not quite four months post-diagnosis. I have one surgery behind me. I am half way through my six rounds of chemotherapy and am still facing six weeks of radiation after chemo, and, potentially, three more surgeries. That being said, from the very start, I only considered one possible outcome for this circumstance. It will be victory over cancer. When my doctors started showing me percentages for this and that, my only comment was that I intended to stay on the right side of these percentages, no matter what that takes. I am not finished with my life on this planet. I have so much to live for. I see it in the faces of my young daughters. I feel it when I plan future road trips and travel adventures with my boyfriend. I have nothing but excitement and happiness when I think about the rest of my life. Maybe the difficulties I have had in the last few years, culminating in the discovery of cancer in my body, were the wake-up call I needed to reset my life onto the right path. It certainly has made me re-evaluate my priorities. I am improving my eating habits, eliminating stress and negativity from my life. I am taking more time for important things, such as time with my kids, time for exercise, time for fun and lots of laughter!
So where does the garden come in, you may be thinking? Well, to celebrate the return of spring after this brutal winter, as well as a way of marking my halfway point in chemotherapy prior to tackling round 4 (yesterday), I called on a group of family and close friends to come help me tackle my neglected back yard. I bought a deteriorating duplex on the verge of foreclosure two and a half years ago, and have been working gradually to restore it to its glory. The backyard was so overgrown with weeds when I moved in that I nearly lost my children back there, yet that project always seemed to get set on the back burner. I knew I wanted to work on it this spring, yet, still weak from surgery and less than energetic from chemo, I also knew it was time to take my friends up on offers of assistance. I couldn’t have done it without them.
I am so grateful for the help. It was a beautiful, sunny Sunday afternoon. I spent the week buying native perennials, veggies for a nice healthy vegetable garden, and blueberries, blackberries and strawberries (because I took the girls to the garden center with me). Of course, I stocked up on beer, soda, water and food to take care of all those who put in hard work to get the back yard in shape. I’m amazed at how much we accomplished. In a few hours, we churned up a lot of dirt, pulled weeds, added topsoil and mulch, planted a whole veggie garden, as well as a great perennial garden with a perfect spot for my hammock. To borrow a lovely sentiment from a friend who expressed, “I thought of my chemo as roundup…a weed killer…so my garden could grow!”. My backyard will always remind me of the wonderful love and support I am blessed with in my life. That is what my victory garden represents to me.
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.
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!