Thursday, January 30, 2014

Please be patient with me. I am still trying to figure this chemo thing out.

I have long prided myself on being a reliable person. If I say I am going to do something, I do it. Or rather that is how I always had been until cancer came along. I hope the people in my life can be patient with me over the remaining five months of chemo that lie ahead.
   I am now seeing how I really just have no idea what side effects will hit me or when the side effects will come on with a vengeance. I am more tired than I have ever been in my life. I feel changes in my body from day to day and sometimes from hour to hour, and even minute to minute. I may feel "good enough" in the morning, only to find that by lunch time I am too tired to function. Nausea and other side effects sneak up on me when I least expect it. 
  I hate canceling or rescheduling plans. I hate disappointing my family. It pains me greatly to say, "I can't because I don't feel well or I am too tired". I especially hate saying those words to my kids. I hate bailing on my friends. I don't normally do any of those things. Please know that when I am unable to do something that I have planned on, I am so terribly sorry and it bothers me more than you can imagine. I don't like being unreliable. I don't like feeling like a flake. I want to honor my commitments and obligations so badly that I feel constantly worried about letting people down.
    If I have to cancel or reschedule plans or say, "I am sorry but I just can't do X right now"...please hang in there and don't give up on me. I promise I will be back. I am trying hard to get better now so I can be the person I always have been. 

Wednesday, January 29, 2014

Week three and, finally, a run!

I had my third chemo infusion on Monday (1/27/14). Since my digestive tract was such a mess last week, I decided to try to not use any nausea medication that I had at home. I have been eating some ginger chews that I got for one of my ultramarathons, and they help but they aren't quite as helpful as the prescription medications. I woke up at around 1 am on Tuesday and was feeling pretty queasy. I was queasy all day yesterday and then again this morning after awakening at 3 am. My fatigue has increased noticeably. Peyton reminded me this morning that the nurse had said to expect increased side effects between days 15 and 20. I looked at the calendar and, sure enough, yesterday was day 15. So I guess I am right on schedule there. 
   The only thing I can compare the side effects to right now is pregnancy. I keep thinking that I feel vaguely like I did when I was pregnant: nauseous, tired, digestive problems, etc. Is it wrong that I keep thinking, "thank goodness I just have chemo side effects and I am not pregnant!"? Love my kids, but I am enjoying them at their current ages and stages, and I am too tired to start all over again :) 
    The past couple of days, I was stuck doing this, because running was too painful. The stair master is a device of torture, but it really gets my heart rate up and gives me a heck of a good workout. When I cannot run, this is a good substitute.

The exciting news is, for the first time in over a week, I got a real run in today. Yes, I still had to stop to go to the bathroom about every 1.5 miles, but at least I actually RAN in between my bathroom stops. Hallelujah! 
     I have always subscribed to the theory that when I am running socially with a partner or a group, the right thing to do is to go at the pace of the slowest runner. The sad thing is, right now, *I* am the slowest runner. I am really thankful that I have friends who have been willing to slow down for me. I am slow and stop to go to the bathroom a lot, but hopefully I still provide entertaining conversation.
    What seemed so easy to me before is very, very tiring. But, continuing to exercise through my chemo is very important and I plan on doing whatever I can through my treatment. Slow or not, I am ecstatic when I can get out and run these days!
    I am still trying to figure out how to manage side effects. By dinner time, I am completely exhausted and just want to sleep. I am not sure if it is better to take the nausea meds or not, because the combination of all of the meds seems to do unpleasant things to my system, but feeling like puking all day is not particularly fun, either. Maybe by the time July rolls and, I will have this all figured out. Or maybe not. Either way, I ran today and that makes me happy!

Monday, January 27, 2014

Heading into infusion #3

Last week was a definitely challenge. This past week's motto has been "run when you can. Walk when you can't run. Crawl if you must. Rest when necessary. Above all, never, ever give up!" There have been days of lying in bed this week. There was a day in the hospital. There have been days of walking because I was too sick or in too much pain to run. There have been days where I did a pretty pathetic combination of run/jog/shuffle/walk. I went from somewhere in the 65-70 mile week range the week before to 22 miles this week, and more than half of that was walking. I got out last Sunday, then did not even attempt to go out again until Friday. I walked after my blood draw on Friday. Saturday, I tried to run but did more walking than running. Thank goodness for friends who are willing to slow down for me right now because I am hard on myself for not being able to run.
   Sunday I got in 8 miles. Maybe three of that was running. It was physically not particularly pleasant, but at least the weather was nice. Here I am finishing my 8 mile run/shuffle/walk yesterday, wearing my Run or Die shirt.
   Today I am still having some digestive issues. My digestive tract is still angry and I feel slightly nauseous. I am tired. I have infusion #3 this afternoon. Hoping this week is a little more forgiving. After today, I will be 1/6th of the way through my chemo treatments.

Thursday, January 23, 2014

Week two of chemo

I have now completed two chemo treatments. Two down, sixteen to go. The thing I discovered quite quickly after my first treatment is that chemo really does effect every person individually. What I had mentally prepared myself for and then what actually happened were two very different things. I expected to be tired and slightly nauseous the first two to three days after treatment, which I was. I didn't expect that my digestive system would actually get worse as the week went on and into week two of treatment.
    Last weekend I woke up on Saturday and immediately started with digestive issues. I thought I should have been feeling better by the weekend, since my treatment was on Monday. This continued on into Sunday, and then by Monday I was feeling pretty miserable. On Monday, I had my second chemo treatment. The kids were out of school. The mom of one of Peyton's friends graciously invited Peyton over so that Peyton wouldn't have to come along to the cancer center. Riley wanted to come, so she, Steve and I went down together. Of course no trip to the cancer center with a teenager is complete without an infusion selfie! 

 Chemo went as planned and we were headed back home within two hours of getting to the cancer center. I had felt pretty uncomfortable going into the treatment, so when I got home, I laid down for a bit. 
    The thing with digestive issues is that once they happen, they tend to snowball. This was not what I had expected, so things quickly got out of hand. I will spare you all the details but I spent the better part of Tuesday and Wednesday morning in pain and honestly just feeling miserable. Since this had started on Saturday, I called my doctors and talked to a couple of friends who work in health care and decided it was time to go to the emergency room. Steve had to go in to work for a mandatory training Wednesday morning, but he left halfway through the day and took me to the ER. 
   In the ER, I got some much needed medication. I was still awake all last night, in and out of the bathroom, but hopefully today marks the turning of the corner. I will stay home in bed trying to rest and regain some energy today. The last time I ran was on Sunday. That turned into a run/walk because I felt so sick. I never take four days off in a row (the exception being after my surgery). I hope to get out and do a couple of easy miles tomorrow. Going into this, I said my goal was to run minimally twice per week. This week might mark that minimum goal. That's ok. Some weeks will be like that.
   I cannot close this out without mentioning how fortunate I am to have some truly amazing people in my life. I could not leave the house for a couple of days. My husband's job is not a flexible one, so when I am unavailable for any reason, it really becomes a challenge to coordinate kid drop off, pick up, practices, lessons, etc. This week, I had friends bringing me medication that I needed. I had one gracious couple bring both of my kids to their respective schools, and help out with Peyton after school when I was in the hospital. Another friend kept Peyton during my chemo treatment. I had friends checking in on me by text and email, offering to help out with the kids, offering to bring food, offering to take me to the hospital and guiding me into making decisions when I was unable to make a decision myself. I have friends who work in health care who have been so patient and helpful with my questions. Their compassion, concern and humor has helped give me some peace of mind and reassurance through this whole process. I would be remiss if I did not mention the counselors at both girls' schools who have taken time out of very busy schedules to check in on a routine basis with my daughters. This has been so exceptionally hard on my kids and knowing I have fabulous women reaching out to them makes me feel very fortunate. Of course, my husband Stephen, who always has my back. I do not think I could ever put into words what he means to me. It's easy to be a good partner when times are good. Being a good partner in times of difficulty takes true love and a depth of character. I married a really special guy.
    To say I feel indebted to everyone previously mentioned here is an understatement. There are certain debts of gratitude that I may never be able to repay. I hope everyone in my life knows how much I appreciate them. This has been a really challenging week. Hopefully I have turned the corner and can get the side effects under control going forward.

Tuesday, January 14, 2014

First chemotherapy treatment

Yesterday was my first chemotherapy infusion. My husband is off from work on Mondays for the next couple of months, so we scheduled my treatments for Monday so he could go with me. We went for a run after bringing the kids to school. After cleaning up, we ate some lunch and then headed to the cancer center. 
     We checked in and then were called back to the infusion room. The nurse told us to sit wherever we pleased and she would find us. The room is very large with rows of comfy reclining chairs. Steve and I found a corner of the room that was unoccupied and settled in. The nurse came and hooked my port up to the IV. I got a small dose of heparin, and then some anti nausea medicine. After about 15 minutes, she came over and hooked up the chemo. The actual chemo drip only takes about 35 minutes. So, altogether, my time hooked up was only about an hour. I was told to plan two hours per visit total.
    The nurse told me that I would probably feel worse a day or two after my infusion. She also told me that I may be surprised by how well I feel the first two weeks. Apparently, the side effects usually get worse about 15-20 days into treatment.
   The worst part yesterday was the headache I got after treatment. I took it easy last night. I was pleased that I was able to attend a scheduled meeting this morning. 
   This afternoon, I was feeling tired, with a headache a bit of nausea. I debated with myself over whether I should nap or run, and the run won out. I got a nice run in this afternoon, and my headache temporarily felt better. Fresh air and sunshine really are the best medicine! I don't know how I will feel over the coming weeks, but I plan on making the most of every day that I feel well. If all goes as planned, I am down one treatment and have 17 more to go over six months.

Monday, January 13, 2014

It's show time!

I woke up scared today. I am starting chemo this afternoon. I wonder what side effects I will experience, how it will impact my life, my husband, and most importantly my kids. I could sit here and dwell on things, and be afraid. Instead, I got up, cleaned the house, cooked breakfast for the family, and went for a run with my husband after school drop off. Ten miles done in crazy winds. As always, I am so grateful that I was able to get out for a run.

It isn't that I don't experience fear or negative thoughts. I respect my fears and give them time and space but I refuse to wallow in negativity or self pity. Thinking positive thoughts is not going to fix my problems. Allowing destructive thoughts to take over my head is not going to help me, either. We can allow our problems to turn us into bitter or angry people. Or we can choose to acknowledge our difficulties and try to take action to move beyond them. I consider myself to be neither optimist nor pessimist but rather a realist. It won't be easy, but I hope six months from now I can close this chapter of my life and move on. 

Friday, January 10, 2014

First blood draw

     When you go through chemotherapy treatments, one of the most common side effects is to have levels of blood cells (white blood cells, platelets, etc) get out of whack (in medical terms). Subsequently, the doctors require blood levels be checked often. If the blood test numbers come back out of a normal range, then treatment has to be delayed or adjusted accordingly. I will be going for blood labs on Fridays, and having chemo treatments on Mondays for three weeks out of the month, with a week off from treatment. If things don't go as planned, we will have to adjust that schedule, maybe to a two on and one off rotation. So for the next six months, I will be hanging out at the cancer center twice per week three weeks out of each month.
     I went in this morning bright and early for an 8 am lab. This was my first. They stuck the needle in my port. The tech tells me to turn my head to the left. Then she had me stand up and raise my arm. Then she has me go into another room and lie down on the bed. Nothing will come out of my port. First time trying to access it and it is being stubborn. So, I got a shot of heparin (blood thinner) to try to clean things out. After about 20 minutes, it was flowing enough to get the vials she needed. 

Here is what it looks like. I am wearing my lucky Vermont 100 shirt :)

Here is Steve waiting for me. Photo taken from my lying down position :) I just love that guy! He puts up with my nonsense. I have no idea why :)

We had a visit with my doctor who explained the schedule. Then we talked running for a couple of minutes, because we always do. I like doctors who are runners. They get me. I won't see the doc again for another month unless I have problems. 
     After seeing the doctor, we went out to the scheduler. It took us about 30 minutes to get the next two months of appointments set up. The entire staff is so nice and pleasant. I think it takes a special person to work in oncology day in and day out. I don't know that many people would be able to put aside their own daily problems to be a constant comfort to others. It really is a unique place. I noticed in the waiting room this morning that everyone knew each other a la Cheers. I guess after six months, I will be regular, too. 

Tuesday, January 7, 2014

"I am so sorry. That really sucks"

Throughout this whole process or testing, surgery, diagnosis, and now starting treatment, I have really been blown away by how kind and thoughtful people are. My friends have all rallied and done kind and helpful things both big and small. People sent flowers and candy and brought my family food. People helped out with my kids. People called me and sent me texts and emails to see how we are doing. When I couldn't run, people met me at my house to walk very slowly with me. They brought and sent me books. The kindness of my fellow human beings has enveloped me in love and friendship over the last couple of months. I can never express how grateful I feel for the support I have received. 
   This post really is not about my particular situation. It applies to anyone who is going through something traumatic. The subject has come up a number of times in conversations between my friends and I: What do you say to someone going through a really difficult time? Sometimes people don't say anything at all, often because they just don't know what to say. Or sometimes people worry they will say the wrong thing. If you don't know what to say, just say, "I am really sorry. That really sucks". If you know the person fairly well, you could always throw in a, "how can I help?" I can guarantee no one expects you to fix their problems, but I know that people will welcome those who reach out to them. People who are struggling with something want to feel like they are cared for and are not alone. Acknowledging the situation and admitting that it is crappy is good. We KNOW we are in a crappy situation, so do don't worry about exposing the elephant in the room. Acknowledging the elephant in the room validates the experience and the feelings of the person who lives with the elephant.   People in need will welcome the fact that you have taken time out of your life to reach out to them. Even if it seems like a small deal to you, it is a huge deal to your struggling friend. 
  We will all face adversity in life, whether it be an illness, death of a loved one, job loss, divorce, etc. If you know someone who is dealing with a great difficulty, take a moment to reach out to them. Don't worry about saying the wrong thing. Just let that person know you are aware of his or her struggles. The recipient of your concern will be very happy to hear from you. A kindness is never forgotten.

I still don't belong here

Yesterday my husband I ran ten miles in the snow to start off our day. We had a beautiful bright blue Colorado sky with plenty of sunshine. It was spectacular, and not too cold.
  In the afternoon, I had an appointment at the cancer center. Steve and I met with the nurse practitioner for an education appointment. We both really liked the NP. She has been working in oncology since the 1970s. She said their goal is to prevent side effects as much as possible. She went through the list of possible side effects with me. They include nausea, extreme fatigue, hair thinning, diarrhea and/or constipation, mouth sores, low platelets and very dry skin. Hopefully I won't experience all of those.  The NP said that the nausea is sometimes worse for women who had bad morning sickness when they were pregnant. I was someone who felt sick to my stomach all day through both pregnancies. So, to be prepared, the NP wrote prescriptions for a couple of anti nausea medications. I need to get them filled prior to starting chemo next week. 
  I will have to go in for twice per week appointments. The chemo requires weekly blood draws to make sure everything is within an acceptable range. They won't book the blood draw and the chemo back to back, so I would either need to go for most of one day per week or two shorter appointments twice per week. This week I am scheduled for a blood draw on Friday and first treatment Monday. I will see how that works and then adjust accordingly. If your blood counts get out of the acceptable range, treatment will be delayed. Right now the plan is three weeks of treatments, then the fourth week off, repeated for six cycles. The NP yesterday said that sometimes they have to adjust the schedule to two on and one off. 
  The NP talked at length about trying to avoid getting sick. I am to avoid crowded places and sick people, wash my hands often, etc. While she was giving this speech, my husband started coughing. He isn't sick, but his throat was dry. He coughed and coughed, and then reached over and took a drink of my water. The nurse eyeballed him as he did it. I found this hilarious :)
 I want to diverge for a just a moment. We cannot wrap ourselves in bubble wrap. People get minor illnesses and go on happily with their lives all of the time. That said, if you or your child become ill beyond a minor cold, please stay home or keep your sick child home. I know it is inconvenient, but what is inconvenient for your may put someone with a compromised immune system in the hospital. Or, at the very least, delay needed treatment.
  The NP did say that I could and should keep walking or running. She said people who exercise do better through their treatment. She said I will likely have to cut back, but I shouldn't have to stop.
  After discussing things for about 45 minutes, we went for a tour. She showed us the room where they access your port, and then the room where they do the actual chemo drip. It was a large room with many comfortable looking chairs. There is a family who lost a loved one who donates a sandwich tray every single day. This is their second year of doing so. What a lovely act of generosity towards strangers! 
  My infusions will take about an hour. I will receive an anti nausea medication first through a drip that will take about 30 minutes, and then the chemo, which will take another 30 minutes. This will give me plenty of time to start working through the stack of books I have accumulated in the last couple of months.
  As we walked out of the building, I had about ten seconds where I got a little teary. I stopped and hugged my husband, and that was enough to make it pass. I just can't help but feel every time I go to the cancer center that I do not belong there. Probably every single person in there thinks the same thing. 

Monday, January 6, 2014


When I got my cancer diagnosis, suddenly thoughts of cancer started to dominate every aspect of my life. The chemo port in my chest is a constant reminder that something is terribly wrong. My life is different in ways large and small right now. I crave to sense of normalcy from my pre diagnosis days. I want to be concerned with the mundane aspects of life.
 So, even thought it was -4 windchill with several inches of snow on the ground here yesterday, my husband and I went for a run. It is just what we do. We were both runners when we met, and we built our relationship over hours, days, weeks, months and years of running together. We are not a dinner and a movie kind of couple. We prefer to be out, pounding out miles together, discussing everything from the very run of the mill (what are we having for dinner) to much deeper topics. We have solved major problems in our life while out doing long runs together. 
  A month after we met, we ran the Wyoming marathon together. It was a small field, and I came in first female. Here we are at the finish. 
A week later, we ran the Taos marathon together. Soon afterwards, we ran the snow mountain ranch marathon together. We have run countless miles and races together since then.  Running is a very big part of our relationship. It is a special bond we have together. When I ran the Vermont 100 this past summer, it was my husband who ran with me for 30 miles through the night, and I wouldn't have wanted anyone else with me during my first 100 miler.
 So yesterday, we hit the trails despite the cold, windy, snowy weather. 
And after a frigid run, we took our youngest daughter to American girl. She has been saving up to buy Caroline.

And then we came home and watched the football playoffs and had dinner together as a family. Even though I am very much aware of what is to come in the next week, it felt as close to normal as it is going to be for a while. I am grateful for normal.

Thursday, January 2, 2014

A state of disbelief

I received my diagnosis of pancreatic cancer the day I left the hospital after my distal pancreatectomy and splenectomy. I do not fit the typical patient profile at all. I am young by standards for PC, as most people diagnosed are over 60. I do not smoke. I am not overweight. I have no known genetic risk factors, or lifestyle risk factors. Even my doctors were all very surprised by what the tumor pathology showed.
  Prior to my surgery, I knew I had a neoplasm in my pancreas but I had no real reason to believe it was cancer. The doctors felt that it needed to come out soon, but that it was probably benign or premalignant. As I went through the testing process prior to my surgery, I had days where I got very frightened, but I always convinced myself that I was very healthy and that I would be fine. I was more afraid of the surgery than of any potential diagnosis, truthfully. I really and truly felt the cyst would turn out to be of no consequence. When I got the news that there was invasive carcinoma, it took me some time to process it. I still don't think of myself as a sick person, or even as someone who had a cancer diagnosis. 
  The diagnosis of pancreatic adenocarcinoma is a very scary one. The mortality rate is extremely high, even for early stage PC. The five year survival rate for stage 1 PC is about 30%. I have several things in my favor. I am still relatively young. I am very healthy. My tumor was small. I have every reason to believe I will be in the group of survivors. 
  I know I am lucky that my cancer was discovered early, and yet I don't feel at all lucky that I had pancreatic cancer. I have tried to connect with other PC patients with a similar early stage diagnosis, but there are so few of us out there. The ones I have found were diagnosed and treated only a year or two ago. I want to find the stage 1 survivors who are still alive and thriving 20 and 40 years post treatment. I hope I am around long enough to provide someone in my position comfort and support years down the line. 

Wednesday, January 1, 2014

Happy New Year 2014

Today is January 1, 2014. I know I am facing six months of chemo treatments for pancreatic cancer. It is going to be a difficult road to travel at times. But, I love to start off the new year by doing something I feel is positive and hopeful. Thus, today I volunteered at and then ran the Rescue Run with my husband and daughter. I love volunteering for Pikes Peak Road Runners. I enjoy being at races and being with other runners, whether I am running the race or not. So, to set the mood for the year, here we are having fun together.

Happy New Year! May 2014 be filled with love and joy for all!