My off week and you are only as happy as your unhappiest child

This past week was my week off from chemo. I really love having a week away from chemo and my twice weekly trips to the cancer center. As nice as all of the employees are, I prefer not having to go to the cancer center! I won't miss it when I am done.  I have now completed two cycles, with six treatments. I have 12 left to go. I admit that the 12 still seems like a daunting number at this point. I know, I have made progress. But, it still seems like a long way to go. I am ready to start feeling more like myself. I miss the energy I typically have and wonder if I will ever get back to feeling like me.

    There is a saying that "you are only as happy as your unhappiest child". The past couple of weeks have really hammered home the meaning of this saying. Having a sick parent turns a kid's world completely upside down. Being sick is not my fault, I know. But, I cannot escape the fact that my illness has caused stress and fear in the lives of my children.

    Much of my time and energy has been spent trying to mitigate the effects of the stress on my kids. This is the hardest part of my cancer diagnosis by far. It is not the lingering effects of surgery, or the fatigue or nausea from the chemo. The worst feeling in the word is seeing the pain, stress and fear that my illness has caused for my children. I am trying to find ways to help them through all of this and make the world seem normal, but I admit that I feel helpless at times. Their pain is my pain and I feel it deeply and acutely. As a parent, I have known that I could not protect my kids from all of the painful events they would experience in life. Nor would I want to protect them from every source of pain. A big part of being a successful adult is learning to bounce back from difficult experiences, and my goal as a parent has been to help my kids learn to be resilient adults. That being said, I never expected to be the cause of one of the most traumatic experiences of their childhoods. It is a challenge to help them get through this really difficult experience, particularly while I am living it. I am a resilient person, though. I hope that leading by example through this will somehow help my kids see that this may take us down, but it won't knock us out.

     I am forever grateful to a couple of teachers who will remain nameless. They are teachers or former teachers who my kids have bonded with over the years. These professionals have taken time out of their already over scheduled lives to connect with my kids. They let them know that while times are tough, they are not alone. I can never express how much these acts of selfless humanity mean to me. I know it is not their job to emotionally prop my kids up during my illness, but I am so thankful they have reached out to my kids. The greatest impact we can make on the future of our the human race is to help children become better human beings. These teachers can rest assured knowing that my kids will become better people because of their caring and compassionate interactions. I am so thankful for their assistance in helping my family get through my illness.

    In lighter news, for fun this past week, I got in some running. This wiped me out for several days afterwards, but it was SO worth it.

Friends came to visit me from Boulder. This afternoon of conversation just left me feeling happy. There is no other way to sum it up.

On Friday, I had to go back to the cancer center for a blood draw and a doctor's appointment. It always seems harder to go back after a break. My husband has been going with me to my chemo appointments, but he cannot make it to the blood draw and doctor's appointments. I think the fact that I have been away for a little while and then I go back by myself after a break contributes to the sadness I feel. This past Friday, there were a lot of very sick people at the cancer center, and I heard about two who were relapses and who did not have a very good prognosis. We never know what the future holds for us. I am keeping these ladies in my thoughts and hoping for a miracle.

   Today will be a day of a run, housework and errands in preparation for chemo treatment #7.

Week 5 fatigue and life's essentials

I had chemo treatment number 5 this past Monday. I have still been trying to kick the respiratory bug I got a couple of weeks ago. The cough has slowly gone away, but I have been left with some lingering fatigue, stuffiness and a general sensation of my chest and lungs not being 100%. At this point, it is hard to figure out what is chemo related and what is illness related.

     I knew I was going to feel crappy after chemo anyway, so Steve and I went for a run in the morning. It would end up being the longest run of the week. The kids were out of school again, so Peyton went to a friend's house and Riley came along to the cancer center with us. The infusion went as anticipated. The chemo nurse asked the doctor about my chemo induced amenorrhea. I guess he was surprised that it had happened, but I can vouch for the fact that it has. He seemed to think my cycles would start again once chemo is over. I hope so. 

    I am not sure if it is the chemo or the anti nausea medication, but I am always very tired after chemo treatments. I look forward to getting home, putting on my pajamas and crawling in bed. I was not as sick this time as I had been the previous week. I laid down for a while, and when I got up, I found that the friend who had watched Peyton that afternoon had made me some "chemo moonshine" to help with the nausea. I do think sipping a little of this helps with nausea. No, there is no alcohol in it :)

     On Tuesday, I had to take Greta in to the vet. She has had a growth on her leg for a while now that we have just been observing for changes. The previous Friday afternoon, she had jumped up on the bed with me, and I noticed a big red spot that alarmed me greatly. You can't tell from this photo, but it is raised. 

I took her to our long time vet, Dr Mohr, at the Black Forest Veterinary Clinic. Last summer, the BFVC burned to the ground during the Black Forest fire. I was devastated for our vet. I also selfishly was sad for myself because I did not want to take Greta anywhere else. The good news is, Dr. Mohr found space directly across from where his clinic had been, and he is back in business. He did a fine needle aspiration of Greta's leg and said he had been concerned about it being a mast cell tumor, but he did not see any cancer cells in the FNA fluid. We have enough cancer in our house right now. Greta is nearly 10, but she seems to still be a very healthy dog. I am looking forward to sharing a few more years with my girl.

   To celebrate, we came home and snuggled in my bed together. 

     The theme of this week has been fatigue and taking care of the essentials. Tuesday, Wednesday and Thursday, I crashed and slept during the day. I am not and never have been one to take naps. So, if I fall asleep during the day, I am truly exhausted. I think the previous week of not sleeping due to my cough just caught up with me. I really felt like life has just kicked my behind the past couple of weeks. Some days, it has been all I could handle to get my kids ferried around to school and activities. What I did appreciate from catching a few daytime Zs was that napping enabled me to stay up past 7 pm to spend some time with my family in the evening. There is nothing more important to me right now than supporting my kids to the best of my ability. My having cancer has been obviously very distressful for both girls. The fact that I have had to go to bed so early many nights has been a constant reminder of illness and of life being turned upside down. Being able to hang out with the family after school and practices and activities and homework is a gift. I don't want to sleep through six months of their lives. I am all too aware of how fast the clock is ticking for all of us right now. Being ill is robbing me of precious time with my children who are growing up much faster than I would like.

    Going through surgery and chemo has taught me that sometimes you have to pare down to only the essentials in your life in order to survive. I have had to really set limits and prioritize how I spend my time right now, since my energy is so limited. My family, my friends and taking care of my body through rest, exercise and nutrition are the most important things right now. If that means I only have the energy to get my kids to school, go for a short run or walk and then come home and nap so that I have the ability to see my kids and husband in the evening, then so be it. Maybe I will feel better after I am completely over this illness and I am just dealing with chemo side effects, but maybe not. Maybe this is the new normal for the next few months. Either way, I am learning that life is very short and precious. I have no idea how long I have left on this planet but I plan to spend my time with people I really love, doing things that I consider essential and joyful. Maybe it shouldn't have taken me 45 years and a cancer diagnosis to figure these things out. We spend too much time thinking about all of the "shoulds" instead of what is really crucial to our own well being. Think about what and who you consider essential in your life. Spend your time with those essential people doing those things that give your life meaning. 

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!

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.

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.