Living With Intention

Here is what I learned this week: I am much better able to handle being the patient than the worried wife. We had a scare with my husband this week that forced him to take only his second sick day in the 12+ years we have been together. I do not want to go into details because that is his personal business, but we ended up spending most of Thursday at the doctor’s office and then waiting for testing. Early in the day, I was concerned by the sudden onset of his symptoms. I jumped into action, making phone calls and coming up with a plan of action. Throw a problem at me and I want to take charge and fix it. While I was almost certain the symptoms were brought about by something fairly benign, as I raced around to pick up kids and attend sports meetings, I thought, “well, what if it is something serious? What then?” That fear was so much worse than anything I have felt for myself over the last year. I can handle anything that happens to me, but I cannot bear the thought of my husband or children being sick or suffering. We do not have clear answers yet as to what happened. There will be follow up with a specialist, but is symptoms have improved over the last few days. 

I remember early on in the process of my diagnosis, Stephen saying that he would rather go through my surgery and treatment in my place. I had an instantaneous almost angry reaction of, “NO WAY! Don’t even say that!” Not that we had any choice in the matter, of course, but when you love someone deeply, you really would take pain on their behalf. On Thursday, I found myself in that same exact spot, but with our roles reversed. I found myself engaging in silent prayer and bargaining, “Please do not let anything be wrong with him. I could not face the world without him.” It is true, I would rather it be me. I can handle anything, except the thought of seeing him or the kids suffer or losing them. I am pretty confident he is fine and is going to be ok, but this was frightening and emotionally draining. Seeing my husband or children sick or hurt is my kryptonite.

On Friday, while still exhausted from the emotional upheaval of the previous day, I got up and ran long. I have a race I am training for after all. I also had an appointment with my oncologist in the afternoon and I needed to get out of my own head for a while. So I hit the trail for a therapeutic long run of 23+ miles. I would have liked to have run farther, but I ran out of time. I shared some miles with my husband, and ran some alone. Along the way, we saw this mama and her babies, who still had their spots. We had to stop and snap a picture. 

I squeezed in the most mileage I could before running home to shower and change. Without going into too many details, the appointment went well and I currently have “no evidence of disease”. Obviously, this is exactly what you want. It is really good news. But Stephen and I left the appointment still feeling a bit uneasy and not entirely reassured. I have been referring to what I feel as “cautiously optimistic”. I am not jumping up and down nor am I celebrating…yet. The doctor said it is completely normal to have emotional distress related to testing and follow up appointments, and that I may never feel completely confident again. He also said that with every hiccup I may fear the cancer has returned. I know so far, this has not been the case for me. Whenever I have a GI issue, I just assume it is my new body still trying to figure things out. I truly do not interpret every little twinge as something bad. I do wonder, though, is anything lurking in there that will not cause symptoms until it is too late? There is nothing I can do about that unease except go to my follow up appointments and hope for the best. I will not live in fear but I also will not take my health for granted.

I wish I felt like screaming from the rooftops that I am cancer free, but I just do not feel ready to do that. All I know is that for today, the radiologist did not see any signs of cancer. And so I will do the things I want to and am able to for today. I do not know at what point I will feel confident. In a year? Or two? Or five?  While on a run, I started thinking about what I would do if I knew I had one year to live. How would I spend my time? Who would I choose to be with? I do not think these things because I believe I only have a year, but because I used to assume my time was nearly infinite. Now I make no assumptions of that sort. Maybe if we all knew we only had a year left to live, our lives would look and feel exactly like they do now. Or maybe they would be entirely different. 

I am trying to make very conscious decisions about what I take on. I like to help and do things for others. But I read something recently that reminded me that every time we agree to take one thing on we will have to say no to something else. No matter what, our time is not infinite. Now I am trying to ask myself before I say “yes” to things, is this really how I want to spend my time? If I were going to die in a year, would I be happy that I chose to do this or would I be angry about having wasted my time? This is a constant exercise in learning not to be a people pleaser but in learning to do what is really important for me and my family. It is a daily challenge to make each decision very consciously, but I think it is really important for my own mental well being.

So I continue to run and train and spend time with people I love. This week, I ran with Jenny, Debby, Tracey and my husband. They are all people who I love dearly and I am grateful for every opportunity that I get to be with them. 

This is Tracey and I at Spruce Mountain Open space.

I ran back to back long runs Friday and Saturday. Friday was a 23 mile run and on Saturday, Stephen and I ran 18.5.

We have a couple more weeks of long runs and then we have to taper for our races. Spending time running together is our quiet way of celebrating the good news we received this week. Running has taken on the feeling of a sacred ritual that binds us together as we struggle against obstacles and challenges, both in life and on the trails. Every run is both ritual and celebration. This is how we choose to spend our time together, and I have never regretted a single run we have shared. 







Advertisements

How Do I Make Us Whole Again?

My week was marked by two big occasions. First, the kids started back to school. I now have a Junior and a sixth grader. Honestly, I was not ready for my kids to go back to school because I felt like I missed out on half of the summer while recovering from my final treatments. By the time I felt good and ready to really enjoy time off with the kids, we only had half of the summer left. So I was a little sad that it was time for school to commence.

The beginning of the school year is often met with a mixture of excitement, anticipation and some anxiety not only for the students but also for the parents. The start to this year was no different in our house. My older daughter is facing the increased demands in homework as she starts her IB Diploma program. My younger daughter was moving to a different middle school than most of her friends from elementary school. My daughters are both bright and highly capable, but there is a part of me that holds my breath a little that first day, until I know everything has gone well. Their first days were fine, of course. This year will be challenging for both of them, but I know that their intelligence and work ethic will serve them well.

The other major event of the week was my return for my first series of post treatment testing. I had CT scans on Wednesday and blood tests on Friday. Leading up to my tests, I told people that I expected them to be fine. In fact, I said I would fall over dead from a heart attack if the tests showed anything was wrong because I just expected all would be well. Still, as I thought back to the various tests I had in September and October prior to my surgery, I remembered feeling very confident then that there was nothing wrong with me. In fact, I almost blew off a recommended MRI because I really was completely unconcerned.

Thinking back to how I felt so sure I was perfectly fine, and how I turned out to be wrong, how could I be so sure everything was fine now? My confidence wavered a bit leading up to the tests. For the three days prior to my testing, I went back and forth thinking, “I am perfectly healthy” to “if they find something else, I am screwed!” As soon as the scans were over on Wednesday, that fear immediately dissipated. I think that the fact that I have been very busy with travel and back to school stuff really helped keep my mind focused elsewhere. For occasions like these, distraction is my coping mechanism and it honestly is very effective.

So the organized chaos associated with the beginning of the school year has been helpful. Also, signing up for a 50 mile race has given me motivation to get out and run a lot. I have just under five weeks left until my race. My husband is now officially signed up for the accompanying 50k. He suffers from stomach issues on long distance races and has gotten sick in three of his last four ultras. He throws up. In fact, he throws up a lot. Since I really love longer races, and I really enjoy running with my husband, I am hoping we can figure out how to prevent him from getting nauseous going forward. My husband is pretty amazing because he quits ultras almost every time he runs them but then keeps coming back for more.

In order to train for longer distances, it is common to do back to back long runs. On Friday, I set out early while he took the kids to school. Then he joined me for the remainder of my long run. I finished 24 miles and he ran 20. It was a mercifully overcast and cool day for August. With heat not being an issue for either of us, we finished and felt tired but otherwise good.

On Saturday, we met up with Vanessa who is also training for a 50k. Steve ran 12 miles with us, and Vanessa and I finished 15. On Sunday, I met up with Vanessa and Jaclyn at the Garden of the Gods. We ran just under 9 miles. It was my first time running with Jaclyn. The conversation flowed easily and made the time pass quickly. Vanessa took this picture of the three of us, and as I looked at it, I thought about how running has brought me the opportunity to meet so many interesting, intelligent and strong women. Our experiences as women, wives, mothers, daughters and athletes allow us to bridge the differences that results from our varying  ages and stages of our lives.

I am now ten weeks out from my final chemotherapy treatment. I feel pretty good. I am getting physically stronger and have more endurance each week. I still get tired, but I am able to keep a schedule that I could not keep previously. I feel like the mental fog is lifting. I am wanting to put the cancer experience behind me and move on with life.

I am reminded often that this experience is not just mine. My whole family has suffered and struggled. Whereas I want to move on, and act like everything is fine, I know my children are still processing things. Over the last year, I have been a witness to depression, panic attacks, fear, isolation and anger. My children have paid a heavy price for my illness. I have done everything in my power to keep their lives as normal as possible through everything, but then something happens and I am reminded that my kids are harboring fear in their hearts or anger at an illness that changed their normal “super mom” temporarily into someone else. I am wracked by guilt over the damage to their psyches and confidence and I wonder how to mitigate it and make our family whole again. One minute, everyone seems fine, and then the next, something happens that reminds me that I am responsible for bringing pain and fear into their lives. It breaks my heart to hear my child saying, “I don’t think my friends understand what I am going through.” All I can say is, “No, they don’t understand because they haven’t lived it themselves. It isn’t anyone’s fault. They just have not shared your experience.” That feeling of no one understanding is entirely valid, but not being able to protect my kids from feelings of isolation or alienation makes me feel like someone has ripped my heart out of my chest.

Part of me harbors guilt over my illness. I have missed some activities over the last ten months. I was constantly exhausted. I tried so hard to not have anyone else’s life disrupted logistically. But in all honesty, our lives were tossed into turmoil on an emotional level that I think I am just beginning to understand.

Part of me wants to shout, “I did this for you all, not for me! I put myself through everything so I could be here for you!” But, truthfully I did it for all of us, to maximize my chances of being around to see them grow up and to grow old with my husband. I am sorry that they feel fear, anger, sadness, isolation or loneliness. Even though I want to move on, when I see those emotions coming from my children, I experience them deeply, acutely and painfully, too. I do not yet know how to help them fully heal. I know I am doing my best to help them feel secure and strong and confident. I feel that in many ways, my experience with cancer has made me a better version of who I was before. I hope they can learn and grow from our experiences and become better and stronger versions of themselves, too.

 

Friends, Pikes Peak and returning to ultra distances

The girls had their last week of summer vacation this week. Since we had just returned from our trip 10 days before school started, the last week of summer was filled with appointments, check-ins at school and picking up last minute items in order to be prepared for the first day. Fortunately, the week was not all drudgery.

I had visits with friends both Tuesday and Friday. On Tuesday, my friend Bill and his girlfriend Saraleigh came to Colorado Springs. They were vacationing in the mountains from Iowa and I was so thrilled that they were willing to make the day trip to see me. We went to the Garden of the Gods.

My friend Mark came to town on Friday for his annual date with Pikes Peak. My husband, Peyton, Mark and I went to the race expo and then to Helen Hunt falls in Cheyenne canon.

Sometimes people I haven’t seen in a long time cry when they first see me. This has happened several times over the last few months. I used to feel very awkward about it. One of my friends this weekend said, “I thought I would never see you again.” That is when the lightbulb went off for me, and I learned to just accept the love with grace and humility. How fortunate I feel that there are people who care so much. I guess I have taken it for granted that people knew I would ultimately be ok. Or I assumed that my fears were mine alone. As the fog lifts, I am able to that my friends have helped me carry my burdens all along.

Months ago, my husband said he was not going to race this year. He said this year was about getting me healthy again. I really wanted him to have a race. I wanted him to have something to focus on for himself. So, I signed him up for Pikes Peak Ascent. Steve has wanted to do the double the year he turns fifty in two years, so he needs to keep his qualifier active. I figured by doing the ascent rather than the marathon, he could get away with minimal training and still get his wave 1 qualifier. My husband chose to do no training on the mountain at all and instead spent his time running with me. I was certainly not up for the elevation gain of the Peak this year, so we ran, jogged and walked mostly flat stuff. By the time race day rolled around, Steve’s last trip to Pikes Peak had been on ascent day in 2013.

 

Steve wore the Team Tonia pancreatic awareness shirt that Tim Barry designed. This was the first time either of us had seen it before in person. What an touching experience it was to read the various signatures from friends and strangers from around the country.

So, with no real altitude or hill training to speak of, my husband went out and broke his goal of under four hours with a 3:52. He amazes me. His selflessness over the last few months is what really astounds me, though. Steve could have gone out to run on his own whenever he wanted to, but he chose to stick with me instead. My husband is not one to lavish me with flowers or jewelry, but then again I am not one who needs or even wants those things. I know how much I must mean to him by the amount of time he has chosen to spend with me. Steve never missed a chemo appointment, and he sacrificed his own training to slog along with me at my pace. So while that 3:52 may not impress some fast people, it really impresses me for everything it signifies. It signifies his own selfless sacrifices over the last few months, because he is capable of running faster. It also demonstrates his strength and resolve to still get his wave one qualifier, even though he was suffering from lack of altitude training.

On Sunday, my friend JoAnne had asked to wear the shirt. Here she is at the start.

I remember when JoAnne did the ascent, she said it was the hardest race she had ever done. I am so proud of my friend for bettering her ascent time by almost 45 minutes and finishing in just under 8 hours! I know how hard it is to get to train on the mountain when you have young kids at home, but she made it happen and finished so strong! I am very proud of JoAnne. 

I want to extend a big congratulations to all of my friends who took on Pikes Peak and Leadville this weekend. I followed people’s progress online for the better part of two days. Whether you hit your goals or not, I was inspired by each and every one of you who chose to toe the line.

As for my own running, I have been eyeing a race for months now. I wanted to make it my official comeback race, but I was undecided about distance. Should I run the 50k, which is a much more realistic distance to train for given the time I have, or should I run the 50 mile, which is what my heart wanted to do? The Bear Chase is a race I have run twice. I was third woman in the 50 mile two years ago and won the 100k last year. The 100k was my final race before my surgery, so this race holds an emotional significance for me. As I have begun to feel better, I have decided it was time to get off the fence and make a decision and a commitment to a distance. The last couple of weeks, I have gotten in a couple of 18-22 mile runs. On Thursday, I made it official and signed up for the 50 miler. 

This was the finish line photo with my family last year. I love this picture, because we were so blissfully happy and unaware of what was about to happen to our family over the next few months.

I know I will suffer during the race this year, and I am sure I will not be a podium contender, but I am just happy to be able to return and make an attempt at the 50 mile distance. Going into surgery last year, I was so afraid that I would never run ultra distances again. I am under trained and underprepared right now, but I feel like this is my way of making a bold statement that I will always live my life on my own terms and not be afraid to take chances. 

This coming week is a big one. Monday, August 18 marks 9 months from my surgery. I have my first post treatment testing this week, with CT scans one day and blood tests another. August 22nd will make 9 months from the time I first heard the words pancreatic adenocarcinoma. I anticipate a mixture of emotions cropping up, even though I am not particularly worried about cancer showing up on my tests. This week sounds like the perfect week to start concentrating on 50 mile training.


 

Why We Go Home

Our trip to visit family in upstate NY and VT continued this week. We typically venture east to see family once per year. While I was going through chemotherapy, it became critically important to me to make the trip this year. I wanted to see my family and to physically be able to hug and touch the people I love. I wanted to get away from all of the distractions of our day to day lives so we could just focus on one another. I needed to take care of my soul.

We spent time at the beach on Lake Champlain.

We enjoyed spending time with Stephen’s family in Clifton Park. We saw his mom, most of his six siblings and their families. There is a special kind of party-like atmosphere when a large family gets together. I always love seeing the cousins on the Smith side running around together, even when they have not seen one another for a year or more.

This is Stephen and his mom, my Mother-in-law. She is really a great lady and I am fortunate to be a part of their family.

We ran along the Erie Canal. The east coast trails are so different from western trails, but they are beautiful in their own unique way.

We ran around some of the historic sights of Plattsburgh, NY. We ran through the now closed Plattsburgh Air Force base.

We ran by monuments and historic buildings that I had seen a million times growing up. For some reason, on this trip they seemed both fascinating and beautiful in a whole new way.

We gathered four generations of women from my family together.

We spent time with friends. We saw Bridget and Curtiss. Curtiss is a chef who became passionate about creating healthy and therapeutic recipes for his wife during her cancer treatments. He contacted me during my chemotherapy and shared his experiences and his knowledge with me because he truly cares about other people. I was so happy to be able to see him and Bridget so I could thank him in person. Most of our evening conversation had nothing to do with cancer. However, when we eventually got around to discussing that topic, it was such a comfort to talk with another couple who understands what Stephen and I have been through together this year. As we shared our experiences, it felt reaffirming to be able to say repeatedly, “Yes! I have thought those same exact things!”

Curtiss’s website is below. He has a cookbook and recipes available online. It is definitely worth checking out if you or someone you care about has cancer, or if you just love good food.

http://www.pinkribboncooking.com

We had drinks with Karin and Tim. Karin is a lady I have known since sixth grade. She is a fitness instructor who teaches classes at a gym where I once taught a million years ago. Karin inspires so many people to become better, healthier versions of themselves. Her love for teaching fitness is obvious and her desire to bring new classes to her pupils is admirable. We talked about all of the good things in our lives, but it was the conversation about our vulnerabilities that has stayed with me. Thank you, Karin, for sharing both your joys and your concerns with me, and for letting me share mine with you.

There is one last thing I want to address about reunions. When I see someone I have not seen in a long time, I guarantee that I am not thinking about whether that person has gained or lost weight, or whether he or she has aged well, or about any of the other things people tend to worry about. If I want to see someone, it is because I just want to be with that person. Spend time with people who care about you without worrying about superficial stuff that just does not matter. The day may come when there is suddenly no more time, and you will wish you had not been so concerned with things that no one else notices.

When we first arrived in NY, I felt somewhat overwhelmed. I tried hard to put into words what the experience was, but it was difficult. I had wanted for months to go home to my family, and then suddenly when I was there, I felt odd, different, and somehow like I was living in some strange parallel universe. My life over the last ten months has been so completely different than what it had ever been before. My little nuclear family has been consumed with cancer, chemotherapy, illness and cure. Yet coming home has made me realize that everyone else’s lives have gone on pretty much as they always have. We are separated by so much distance that there is no way anyone who lives across the country can truly understand our day to day experience. The only thing I could liken it to is when a soldier comes home from a long deployment. I imagine the soldier builds up the reunion in his mind, as does his family. He comes home and tries to communicate some of his experience to the people he loves. People can intellectually understand some of it, but on an emotional level, they just have no comprehension of what the soldier has experienced. There is a disconnect, and both parties know it.

It took me most of the trip to sort these feelings out. I had a conversation on the beach with my sister who told me how relieved she was that I was still me. I had not changed. I was still the same person. On some level, I do feel different. I feel like some things within me have changed. But by the end of my trip, I too realized that I was the same person I had been a year ago. I am still me. While my experiences have changed me in certain ways, I am still essentially the same human being. I needed to see to see myself through the eyes of people who know me well.

This is why we go home, after all. To rediscover who we are.

Expect the Unexpected

We visited family back east this week. The theme in my life most recently has been to expect the unexpected. The day before we flew out, I had planned to get up early and get in one last fairly long run on dirt before heading to the land of road running. The roads are not kind to my bones.

Monday morning I got up and took our ten year old bullmastiff out for a walk. She had seemed a little gimpy in the preceding days but was getting around ok, until Monday morning. We walked to the house at the end of our block and she just stopped. After a couple of minutes, she laid down and would not move. The dog weighs as much as I do. I could not pick her up and carry her.

 I was kicking myself because if I had had treats, she would have followed me home easily. Thankfully, I had my phone. I called the house and had Peyton bring treats so I could get Greta back to the house. We had someone coming to stay with Greta during our trip because she is just too old to send to a kennel. I needed to get Greta to the veterinarian that day. I also needed to finish packing, get the house in order and take one of my kids to a doctor’s appointment in the afternoon. Oh, and did I mention that I wanted to get in a long run?

So, I ended up breaking my run into three shorter runs and logged 20 miles for the day. It was not optimal and not how I wanted to do it but I really had no choice. At least I did not totally bail, which I thought about doing. Even more importantly, I got everything else finished that needed to be done. None of it was perfect, but then again, would it ever have been?

We were up before 3 am on Tuesday morning and left our house at four am. Here is a warning: I am to discuss something that may make some people squirm but I do not care. I promised myself when I started writing my blog that I would be honest about my experiences and this is an important one. My periods stopped in January with my very first round of chemo. Because I was 45, I was very uncertain as to whether or not they would come back.

When I have mentioned to people that I was not getting my period or that I no longer had to shave my legs, people usually responded that I was lucky. I did not feel “lucky”, though. It was not the end of the world but I wanted my body to function the way it was supposed to function. I find a sense of comfort in knowing my body is working properly even though it may be inconvenient at times.

Furthermore, I have known many female athletes who have told me that they slowed way down after menopause. I have never been one who has had to worry about making cut off times, but there is a reason why there are so few women competing in the older age groups. They just slow down. It is a reality, not for every woman, but for a lot of them. Beyond the speed and endurance factor, I look to my circulating hormones to protect me from osteoporosis, which runs in my family. 

Just as I was getting ready to board the plane on Tuesday, the unexpected happened again: my period started. I was thrilled beyond belief, but I had no supplies. I scrounged up 50 cents and bought a tampon in the airport bathroom. By the middle of our first flight, I had soaked through the tampon and all over my clothes. I was a complete mess. I had nothing else to wear. Did you know that airports sell tons of t shirts but not so many pairs of shorts? I went from feeling thrilled to feeling humiliated and sad. Hadn’t I experienced enough indignity? 

This is the thing with illness and bodily functions. People feel very uncomfortable discussing them. My running friend T and I have had many conversations about menopause. Whether it is chemo induced or occurs naturally, it makes others uncomfortable to think about it or talk about it. Every single woman will eventually go through menopause. By avoiding discussing it or pretending like it does not matter, we lose out in the chance to learn from one another. If no one talks about it then we feel alone in our experience. We can help each other get through these things by being brave enough to get them out in the open. Ask questions, learn from hide who have been through it and share what you learn with other women.

The truly lowest point for me during chemotherapy was when I had to go to the hospital because I was severely constipated. I was in so much pain that I had been unable to leave my house. The nurse was concerned that I had an obstruction. I was in excruciating pain and was absolutely humiliated. When we got to the hospital, I told my husband, “NOW I feel sorry for myself!” This was the ONLY time during treatment that I felt genuinely sorry for myself. This was one of those things I just had not expected and when it happened, I was completely thrown off guard. I came to find out later that it is one of the most common chemo side effects but people do not want to discuss their bowel movements publicly. Truthfully, neither do I, but I think it is important to do so. Illness is not pretty. Illness is hard for the patient and the caregiver. We always want to see ourselves as young and healthy and strong. In reality, we all hope to live long enough to be considered old. We hope we will continue to be strong and healthy in old age but it does not always work that way. There is a lot about growing older that is undignified, but it should not be a source of shame.

I hope other women will share their menopause experiences. What happened, how it was dealt with, etc. I also hope cancer patients will talk to other patients and care givers about all of their experiences, not just fatigue and hair loss. We have he ability to help others by sharing out own reality. If we are silent, we lose out on the opportunity to give the gift of knowledge and experience to others.

So far, in NY, my husband and I have run together. We have gone to Lake Placid. We have visited with friends and family. It feels good to be “home”. I am grateful for the opportunity to reconnect with so many people who I love. I do not feel particularly good about how I look these days but who cares? I feel tired, I am tired and I look tired. I am not as fit as I used to be. But I am not going to hide out and not live my life. I will take pictures with friends and family and I will be grateful that we all made it another day to spend time together.

It does feel a little weird to try to boil down my cancer experience to a five minute synopsis. It is almost a surreal feeling to know that there are people who know and love me who don’t really know what the last 10 months have been like. How can I ever really explain what has taken place? How I feel, how hard it has been for the children and my husband, how it feels to feel sick every day but to keep going because that is who you are. The emotional side is a whole other aspect that I just do not know if I will ever be able to fully put into words, but I will keep trying because I want people to understand and because I want other people facing their own demons to feel like they are not alone.

I will close with some pictures from upstate NY.

Lake Champlain

Lake Placid

One of my best friends from high school. We try to see eachc other every time I am back home and I am grateful for our enduring friendship.

Here is a lady I used to teach aerobics with in my previous life. We reconnected and faced some significant challenges at the same time. She is strong and tough and kind and I am so thankful that we could talk to one another about simply everything. While our circumstances were quite different, I find comfort in knowing we understand one another.

Scenes from our run