I'm on the bike

Yesterday marked 8 weeks post surgery and 25 doctors appointments since February 1. As a celebration of how far I've come, I asked my husband to put my bike on my trainer and I road for the first time since March 14! I only road for 10 minutes but I missed it very much! I also realized how extremely out of shape I am. It will be a long road back to marathon/Ironman shape. I do have to be careful not to extend my reach too far and hurt my stitches but I enjoyed the experience. I can't quite put my hands on my handle bars completely but I can use my aerobar arm pads to keep me up a little higher. I liked the challenge of it so much, I got back on today and I would spend 30 seconds on the handle bars then up on the aerobar pads. No aero position for me yet. Maybe I can do more tomorrow and then add on 5 minutes next week! I can't wait for the pain associated with my first run which is coming soon! I know it will be difficult going through chemo and starting to run and bike again but I can't wait for that challenge.

One more week

The good news: I am healing. On the outside, everything is closed. He attempted to remove a stitch and said that they are too involved in the healing matrix to take them out and expect the incision to stay closed. So, in the stitches stay until...maybe next week? He also commented that although I am worried about my range of motion (I'm worried that I won't recover all of my motion completely and it will have a negative impact on my swimming), I am doing extremely well with my movement. The bad news: I am healing at sloth speed. I guess this isn't surprising. I did 2 Ironman Lake Placid's in 16 hrs 24 min and 16 hrs 9 min with only a 10 minute cushion between the when I finished the bike and the bike cutoff time. I always said it was because I was getting my money's worth out on the course! Now, I guess I'm getting my money's worth out of my surgeon. I need to convince my body that this isn't the way to do things anymore in both healing and Ironman. The good news: We have a new method of dealing with my stitches which is more involved but should speed healing. I have lots of gauze, betadine, and paper tape in my future. The bad news: I can't start chemo tomorrow. I need to show more progress in healing to start chemo which will stop or slow the healing process. The good news: I can go trap shooting this weekend without any concerns for feeling tired or getting sick! I can watch a couple more softball and t-ball games for my nieces and nephew. I can help celebrate J's birthday and go to a Clown's on Rounds event without worry of how I will feel. I think I will also be able to go to Lila, Kaelah, and Sierra's exploration fair at their school. Other news: I still cannot run but we discussed a not so far removed run start date. I just need to heal some more. My concern is that I have been not running for 8 weeks this Wednesday and I am going to start running again while I am starting chemo - this sounds like a recipe for disaster. I may attempt to get on my bike on the trainer this week and just keep my upper body as non-weight bearing on my handle bars as I possibly can - this was discussed with some acknowledgement that it isn't a horrible idea. My doctor didn't use the words yes or no so I'll take that as a "you can try". I better run or bike until the day I die 50 to 60 yrs from now because I will try my hardest to never go this long without a run or bike ride - I am going crazy without it. Based on my lack of running, I have to cancel my Lake Placid Marathon registration for June and Boilermaker is on the chopping block. Due to my lack of normal exercise and my increase in meat intake to help with healing, my ankylosing spondylitis is flaring up though so my toes, fingers, back, and hips are all really painful. This is making it harder for me to sit still/not run. I had a couple of difficult moments this week too. My niece Sierra finished her softball game and came running over toward me to give me a hug. She stopped mid-stride, turned to my mom and asked in a hushed tone "Can I hug Kelly?" I wanted to cry. It made me so sad. I don't want them to see me as broken and they do. She did come over and give me a gentle hug but it wasn't what she normally would have done and I would have picked her up normally too. Lila was so excited to ask me to go to her school and help with a cow eye dissection but it is next Tuesday and I had to say no. I would have loved to go, although the thought of 6th graders with scalpels is petrifying to me. I barely trust my 10th graders to use them appropriately. I have learned that I hate walking. It is not running which is what I really want to do. I realize that I am doing much more than most people would be doing just in my everyday movements/walking around to do things but I'm not like everyone else - I'm an Ironman. We don't get excitement out of just walking. I did decide that I will be back on my bike by June 2. I asked my doctor about this and he said he sees that being later than he would think which is uplifting. So, May 15 is my new chemo start date. Positive healing thoughts all week long and some light gardening - that should help me out too!

Sabbatical denied, back to the financial drawing board

My original plan for the next year of cancer treatments was to get a sabbatical from my school which would give me some money while I was at home doing research on cancer, increasing my scientific knowledge, and writing a book on my experiences so that I could maintain somewhat of our standard of living while still having work to do and having time to do it. Honestly, it would have allowed us to pay our bills and that is about it. I had planned on applying for a sabbatical at some point in the next few years but the situation I am in prompted me to apply earlier than I had planned. I was denied my sabbatical. So, now I'm back to square one and extremely stressed about this. I am not independently wealthy and although people are raising money in my name, I don't know if it will be enough. I need to make some money next year but due to my treatment plan I am unsure that I will be able to do my job. So, I am applying for social security disability which will most likely be denied because my cancer isn't advanced enough (crazy isn't it). But while I wait on SSDI, I am currently in the market for a part time job in the Schenectady area - I don't want to have to travel far and spend gas money to get to a part time position. I am also very interested in a work from home option. I would prefer not to work in teaching if I was to change jobs for a year because teaching is extremely stressful and developing new curriculum is really difficult - the first year of teaching or the first year of teaching in a new school district is always the hardest for a reason. After the last few weeks of complications and healing, I know I am limited in what I am capable of doing. The sabbatical situation would have been perfect. I could plan to have my treatments every Tuesday and then be able to schedule my scans and my follow-up appointments for the times I needed. Plus, I could have done work, take a nap which would help with healing, and then go for a walk (hopefully short runs, bike, or swim) when I felt up to it. Well, cancer sucks and the stresses associated with it are horrible as well. I am trying to stay positive and continue healing so I need to breath and have hope that all will work out.

Healing!

I have begun getting nervous about appointments again after the last 4 appointments. Today went really well though. I had my bandages taken off, I was told it looks like I am healing well again. There was no talk of more stitches because everything looks like it's healing correctly right now. Honestly, there aren't many more areas that I could have more stitches though. I cannot look at the stitches but I trust my doctor in saying it looks good. I know these stitches will make my scar a little bigger but I don't care. I just want to heal. Who is really going to look at my chest other than me and my husband ever anyway? We re-bandaged so that I could continue to take regular showers and they seem to heal better when they are covered. This also means less maintenance for me. He also said I need to use my arms and maintain my former posture because I haven't been doing that in order to protect my incisions. So, we keep thinking positive thoughts, visualizing my healing and appropriate mitosis, and maintaining my vitamin C and protein intake to keep healing. Because of my lack of healing over the past few weeks, we (both doctors and myself) decided to start chemo next week on Tuesday to give me a little more healing time. My year long countdown starts next Tuesday!

Being my parent/sibling/niece/nephew

There are many reasons I do not have children. Other than the fact that I have asthma and ankylosing spondylitis which, for me, are both genetic and that I could pass them on, I remember what it was like to be in second grade. I was diagnosed with severe asthma when I was 3 months old. For my parents, my second grade year was the worst when it came to asthma. I remember being in and out of the hospital (including being in the hospital for Halloween during that time). I remember having hundreds of needles all over my body when they did my first allergy testing session when I was 5 yrs old. I remember screaming every time they wanted to put an IV in to give me the steroids that would help me to breathe. I knew that I couldn't go through this as a parent and I would never wish those experiences on my children if they were unlucky enough to have inherited my poor genetic predispositions. During this time, I also couldn't have imagined being my sibling. I know that I required a lot of attention - I was getting treatments up to four times a day at some points. If I started having problems breathing, then we had to stop everything and start treatments that would help me. This could not have been easy. I believe that these experiences have made me even more independent as an adult and more motivated to prove that I can do anything as well. Now we are doing this again, just a different disease. A parent is not supposed to have to watch their child go through cancer surgery and treatment. On Tuesday my mom accompanied me to my horrible appointment. Although this appointment was long, there was less crying and no screaming this time so I guess I have progressed since I was 8 but it was very similar to all of the time I spend in a doctors office as a child. I have no idea how hard this is to go through as my parent. I went from being a very independent daughter who showed up when there were family events and who they watched have a fantastic wedding, have a successful career, complete two Ironmen, and successfully finish five marathons to the daughter that requires care and rides overnight. Prior to February 13th no one worried about me - I was ok. Now, they worry about me on a daily basis. I know that I think they can be a little overbearing at times but I also understand that this is one of the worst things a parent can watch a child go through and how do you deal with this. I don't know. You become overprotective again and unlike before when you were getting all of the information directly from the doctor, now you have to get the information from your child or her husband. This is a difference in the loss of control and very hard to deal with. Being my sister is difficult too. I was the person who was solid but not overly involved although I would try to be at every event that I was told about. I loved spending summer weekends around my nieces and my sister. I again was independent and involved in their lives. I loved having positive experiences including singing and dancing with my nieces. It's funny, last summer I realized that the girls would grow up soon and not want to sing and dance with me in the crazy way they would at 10, 7, and 5 would (imagine blasting Moves Like Jagger and dancing with three singing children around the house- ahhh so much fun). I actually remember telling them that I want them to remember this moment when they are older and remember the silly things their crazy aunt did with them - weird right? Sierra would actually walk around the house singing at the top of her lungs so I would leave her alone and not make her dance with me! Now, they are all afraid to touch me. I don't want to scare them when I lose my hair. My younger nieces and nephew don't understand any of this but it makes me sad when Sydney looks at me at my feet and I can't pick her up. I can't wait for the day when I am back to me in their eyes. Although Lorie was the one that I thought would take this news the best, I was surprised when she took it so hard. I long to never have to do that to her or any other family member again. How do I show them I am doing well or I will be cured? I work harder to make sure I get well quickly. I think positively all of the time to speed healing. Ultimately, how will they know I am ok? I will complete an Ironman again. I will get back to nagging them to eat their vegetables (yes, I do this, not my parents!) I will make my nieces dance and sing with me again this summer (if not sooner). I will be able to pick up my youngest niece SOON!!! Hell, I will be able to pick up Lila who is my height SOON (probably not as soon as Sydney)! I will continue to make fun of my sister and my parents on a daily basis. I will ask Lorie stupid questions through texts where her response is "Where are you getting this?" I will cuddle with my nieces and run after my nephew soon even when they don't want to cuddle (Cooper always wants to run so he will be fine with it). I will continue to ask how school is and what are they learning in science class (I feel that is always the best part of the day). I want to be that independent person they knew before February 13th again soon. I will get there soon, I promise. Then we go back to me being me just stronger and with a few more scars!