More Stitches

If you are looking to have a mastectomy or have had one, please note that what I write that has happened to me is extremely unusual. I have always been a slow healer so this may have happened to me because of that. So, please do not read this as it is what will happen to you, it is just what happened to me and I am a very special person! Last Tuesday I had stitches to rejoin parts of my incision back together, I left that appointment disappointed that I seemed to be all of a sudden breaking down. On Saturday morning, another part of my incision opened up. I was convinced it was enormous - my perspective is very skewed on my own body. I was also convinced on Sunday that it was infected - no it wasn't, it was just fighting against those internal stitches again. Bright and early Monday morning, I had an appointment with my surgeon. He cleaned the area and checked my stitches from last week, which looked great. I had two areas down from the external sutured areas that needed a stitch or two but the places where the external stitches had been put in looked like it was healing. He sent me home with an antibiotic just in case since I had a few open wounds and he still wanted me to start chemo as soon as possible and an infection would set back chemo for more time. On Tuesday, I went back to have more sutures put in to close the most recent incision problem. We removed the bandages around my external sutures and found my skin had pulled back from them overnight. We have no idea why. So I was given choices. 1. I could have them all resutured moving outward to use more viable tissue and using thicker sutures would ensure that the area would remain together. 2. I could leave the wounds open and allow them to hopefully heal but that could take months and my risk of infection would be extremely high and most likely chemo would be compromised. 3. Or I could go into the operating room and have them redone there under anesthesia but I would have to wait until at least a couple of days for an OR spot to be opened and I would have to go through pre-op testing again. This would definitely move chemo back even further. #3 was extremely tempting but I knew I needed to do #1 just to get moving forward. I was in the office for 4 1/2 hrs with about 3 hrs of suturing happening to me. No person should have to hear or go through the procedure that I went through happening to themselves. It was not fun. I felt like a trooper though. No tears this time around but a lot of hand holding from the nurse. So, now I just keep putting out into the universe the following words: "Please let me heal correctly this time! Please!" I told my doctor I would do anything to make this work - I would eat crickets if he told me to. I have upped my Vitamin C intake because I read that if Vitamin C intake is low it can delay healing and surgical patients without enough vitamin C don't make collagen appropriately - maybe that is my problem since I don't appear to be making collagen appropriately. I am eating chicken or turkey even venison, or high protein foods at all meals to increase the amt of protein in my diet to help with healing too. Today, I am sore. Very sore. As I heal slightly, my nerve endings are being awoken so the further away from surgery I am I get more feeling. Thus, having tugging and pulling and having my arms in different positions than I have had them for the past 5 weeks was difficult. I am sure I am bruised but I am under so many bandages that I can't tell. It is getting better though. I am sure it will be much better tomorrow. I'm visualizing daily my cells healing and my body fighting infection. I know it will happen. I need it to happen now please!

Set back #1

I knew before going into surgery that my body doesn't exactly recover well from illnesses or long runs/rides but I was optimistic that this surgical recovery would be great. I was even using my visualization techniques I use for marathons and triathlons to envision my healing and encourage my white blood cells and skin cells to do their jobs well. I was envisioning my cells going through mitosis and healing! After a weekend of increased pain (thought it was just me getting feeling back into certain areas) and seeing some not so nice areas on my incision site, I decided to go into my surgeons office. He looked at it and said that my body didn't react to the internal stitches well and was getting rid of them and my skin was pulling away which is what felt sore and tight. He also said that armpits are just hard places to heal because of wetness factors and movement. Plus, in some areas my body reacted poorly to the adhesive in the steri strips and was blistering thus giving me pain. (My dad asked what percentage of patients have these issues, am I just an anomaly?) This was also giving me the "raw" feeling. I asked why this happened as I have been not using my arms much at all. The response "There was nothing you did or could have done to prevent this. Your body just responded this way." Well, that sucks. My body is obviously broken, I'm becoming more and more aware of this. The solution was to re-suture the areas under my armpits. I had honestly gone into the appointment thinking they would give me antibiotic ointment or something and tell me to be careful using my arms but this was crazy to me. I didn't know it was that severe. Having never had stitches before in my life while I was awake and alert, I was really freaked out. I HATE needles! Ever since my life as a child with severe asthma when I was poked with a needle at least once a month if not more, I have had a fear of them. I handle them better now but stitches required multiple needles and was extremely scary to me. Yes, I am an Ironman and know what pain is when it is brought on by myself over the course of 140.6 miles of which I did train for. This is different. I told my doctor what a wimp I really am and then we moved forward. I'll spare you the yucky details but I cried a little because it was painful on the one side even with the numbing agent. The second side was much better because he gave me a lot of numbing agent because I am so jumpy and sensitive to the needles. I tried so hard to put my yoga breathing into good use (I've been reverting to this a lot lately to deal with needles and painful procedures) but even that helps me deal with only so much pain. Isn't it bad enough I have cancer, why do I have to go through painful procedures just to get rid of said cancer? The worst part of the day was realizing three things: 1. I can't start running next week - I'm looking at a full 2 month hiatus from running (this really sucks). My last run was March 14 and my next chance is probably May 3 or May 8. 2. I can't start my range of motion exercises this Thursday but was told he would give me controlled exercises next week. 3. Chemo is on hold until my body starts behaving and healing correctly. Although the stitches are sore, the pain and tightness is gone today so that is better. Hopefully this time around I will be able to heal correctly! I'm thinking positive thoughts!

Funny parts of the appointment while he was stitching me up:
1. He said "A little birdie told me you wanted to start running at 12:01 am on the day you have been given permission to run." Of course I was going running as soon as I was told I could! Who wouldn't! For the second time in two days I was told I was addicted to running and going through withdrawal.
2. I asked "So does this mean I can't start running next Thursday?" His response "Really, you need to ask that question?" My response, "Yes, because if you don't say yes or no, I will go home saying, well, he didn't explicitly say no so maybe if I just do a little it will be ok." He laughed and said "NO running yet!" He later came back to this and included no biking on the road bike or swimming either - I guess he realized he needed to cover his bases.
3. I then asked "So does this mean I can't start doing my range of motion exercises this Thursday which is 10 days after our last appointment?" His response: "Really, Kelly! NO!!!" He realized he needs to be explicit with me from now on with what he wants me to do.

A Waiting Game, Showering, and Being Me in a New Form

I was able to be "normal" last week with my wonderful husband. He was on vacation so we were able to do the things that we would normally do when we are both on vacation - except for the fact that I still can't run or bike. We took our last trip to the Lake Placid Pub and Brewery before my year of being beer and wine free. The Maple Sap Ale was worth the trip! I also was able to walk around the lake twice which was great but at the same time reminded me of what I am not capable of doing.

I had my 4th post surgical appointment and the drains came out! Thank goodness! I hated them very, very much. It was like I lost 5 inches around my waist too since they are no longer adding bulk to my midsection. This also meant that I was able to shower! Oh, how wonderful showering is! I hated showering before but now it is like a little piece of heaven! I can tell that my healing is getting faster but I feel like we are getting me stronger just to pull the rug out from under me when chemo starts.

I met with a dietician as well. She was very nice but didn't exactly give me any information that I didn't already know. She actually told me to eat a high calorie diet in order to make sure I am ready with stores for chemo. She was great at listening and expressed excitement at my "great" diet which made me realize that other people eat really poorly. Of course we eat things that aren't great for us from time to time, but we try to eat well most of the time and she was shocked to see so little chicken, turkey, or red meat in our diet. She listened to my questions, was shocked by the amount of information I already knew and then told me she thought I needed to start running again soon for my own mental health! She then listened to me more and told me to stop thinking so much and expecting the worst and then suggested I need to go back to yoga again soon too! Joe asked if I saw a female version of him as she said the exact same things as he has been saying.

I still do not have a date for chemo to begin. This irks me. Without a start date, I still have 52 weeks of treatment ahead of me. This means, no matter what, I still have a year of treatments to plan for until I start and then I can count down. This is annoying. I know it will be either next week or the week after but then we are talking about me having treatments into May of next year and thus having had cancer treatments from February of 2012 to June of 2013 - far more than the year of my life I allowed cancer to occupy. People say that I will be back to training and competing soon. What is soon about 52 weeks plus another surgery to have the port taken out 4 weeks later? Nothing. I do not go back to my normal until well into June of 2013 this means. Oh, and because I am going to be on some pretty nasty drugs and steroids, I will probably gain weight during this next year which I will have to work hard to lose to get back into racing shape too. I am actually looking forward to the bus called chemo to hit me. I want this to happen so we can move forward. I am really hopeful that it is going to be sooner rather than later! On a positive side, my MUGA scan which was done to see my left ventricle efficiency was excellent! I was happy to see my running at least made my heart really strong!!! Plus, my initial blood work was fantastic which is great too. Yippie for my running/biking/swimming benefits!

I am trying to find my normal. Although it was nice to have people bring us dinner for the first three weeks, I missed making food for myself and this past week and this week, I am doing it for myself except for one night which is perfect. I am super excited to get this part of my life back. I know I may be being mean (some would have a more explicit word for me) but I can't keep having the same conversation over and over again about how I am feeling. The question "How are you doing?" sucks. I am tired of discussing my cancer and my recovery. I want to get up and go for a run with my running partners and have our random life discussions. I want to talk about something fun and interesting like my new clothes - or the clothing choices that I should try on. I want people to realize I am still Kelly, the same independent Kelly I was prior to February 1, 2012. I want to be treated as I was then. I do not want help in my situation unless I ask for it. I may need someone to listen to me but I do not want to have you fix my situation. I need to be treated as I normally would be treated not with kid gloves. I don't want to be told what other people think I should or should not do, I am still an adult and am intelligent and informed enough to make good life decisions. I am still me! If you made fun of me before, continue to do so. If we laughed together over the stupid things we did or what your kids did, we will continue to do so. If we spoke on the phone for hours before (which is with no one), we can't do this as much as I am running low on voice minutes but know I still do want to talk, we just may need to text!!! If we went for coffee before, let's continue to do so. I value when my sister makes fun of me since I know she isn't treating me any differently even with the current situation. She even asked when I could start shaving my armpits again because it was gross - this is a perfect comment from her! Don't get me wrong, there will be times we will talk about cancer but I don't need help getting myself water and I can move from my chair and really want to. Yes, we will have conversations about how I feel but if you didn't text me "How are you feeling?" before, don't do it now. You can ask me what new book I am reading or how my last run was but unless I tell you I'm not feeling well, I'm feeling great! I went to the Delmar dash yesterday and had my first experience at a race that I wasn't running and had planned on running. This meant I also got the question "Why aren't you in your running clothes?" This is the worst part of the experience. They all get to keep training and I don't. It is difficult to tell my athlete friends about why I am not running. It is tough going from training between 15 to 20 hrs a week to walking 45 min a day and then sitting around. My hobby was ripped away from me and that is not OK and people want to make me feel better by saying things to help me but if you say something, you probably don't understand how this feels. My Ironman friends tend to get it because they have poured many hours into it and do not ever want to have it taken away. I am working on finding new hobbies to take up some of the time that was formerly dedicated to training which will contribute to me finding my own new rhythm. I want my friends to still be my friends. I just need to be seen as me and not as someone to feel sorry for. Please take this as a sign that I am doing great and indulge me. I want to be a part of your lives but I want to be there as me not as a cancer patient. AND.. Cancer can be really funny sometimes. Honestly, I have funny moments at each and every appointment and I want to tell you about them. We can laugh about these things and I want to!!!!

On a positive side, I get to run next week (ever so slowly but I get to run). I have been told that once I am up to it, I can also go back to hot yoga as long as I am hydrated enough to do so. I am healing well. I am looking into healing touch treatments, acupuncture, and other non-Western medicine solutions to help me deal with fatigue, healing, and nausea which is exciting to me. Up ahead, I am going to a fund raiser for CRAAB where I get to go trap shooting - I'm super excited! Things are improving daily and I am finding myself in all of this!

Walking with a purpose

During Ironman, if I am forced to walk, I "walk with a purpose". This has taken on a different meaning to me now. Although this week I have had to slow down and go shorter distances in order to get the drains to slow down, I go out daily. This is the time that I use to feel mentally better. I can only sit and watch daytime TV for so long. I can only read books on cancer for so many minutes of the day. I can only look for work from home jobs for so many hours of each day. All of these things make me emotionally drained (yes, daytime TV makes me emotionally upset, it's that bad, I have to stop watching it). I have finally given myself permission to take time to just read instead of looking for financial assistance for next school year. The only problem with walking is that I get sad when I walk the routes I used to run. I miss running so much that I recall how it felt to run this route the last time I ran it. I have started to explore my neighborhood to find new routes that I haven't run. The entire time I am walking these new routes I am thinking about how I can add them into my running repertoire. The only problem I have with this slower pace is that it isn't invigorating anymore so I don't feel like I did something today. I walk with the idea that I am walking my way into my new life. I just need to figure out how that new life is going to be structured. I walk to get rid of the fear that accompanies me about the unknown - yes, I am admitting that on a daily basis there is fear about how I will handle the big chemo drugs, how I will handle 52 weeks of herceptin treatments, how am I affecting my family especially my husband, how am I affecting my friends, will I be able to run like I did before, and will I ever feel "normal" again. But when I walk, I let go. I'm walking with a different purpose now. I'm not exactly getting comfortable with it as I know that in 1 to 2 weeks, I should be allowed to run again!

Weekly appointment #3 post surgery

I wanted to get the drains out badly on Monday so I stayed in my recliner all day Sunday. I knew that if I didn't move much my draining would go down. And it did but not enough. The drains didn't come out. I was told that if it continues to drop this week, I can call and have them taken out on Friday!! I am not using my arms as much as possible to make sure they continue to stop draining. We also found out that some of my pains/irritations that are coming around are just from the nerves around my incision site starting to fire again. It feels good though, I'm coming back around to "normal". We also learned that my tumor was a stage 1/grade 3 tumor which means it was small but aggressive which we knew as it was HER2NEU +. My doctor was happy with my progress though.

My least favorite part of this process now is the little white vest shirt they gave me at the hospital. It is convenient as it has pockets for my drains, it's nice and soft, and it doesn't need to go over my head. It is too big for me though so it is rubbing on my armpits. The millions of snaps are annoying and now that I can feel areas around my incision site, they are irritating the area in between the two incision sites. Plus, I have worn the two that I was given for 18 days now (washing and rotating - I'm not that disgusting) so I am ready to branch out into the fashion world again soon. Only people who have worn this vest will understand my irritations so I appreciate the rest of you who are wondering what the hell I am talking about.

I am sharing this now because I have talked to my school about my options and am looking at possibilities. I will be taking off the rest of the school year due to my surgery and my start of chemotherapy. I am also trying to find a way to take off next school year since my treatments will be weekly and I would have to be absent from school at least once per week for almost the entire school year plus take off a day or two to have my port removed. I also understand the risks of working with children with a compromised immune system. I am petrified of getting sick from the students and derailing my treatment or worse having to be hospitalized from an infection. My oncologist is not happy with the idea of me being around "germy children" either. I have been exploring options (grants, financial assistance, and even work-from home options) and am finding this to be the most emotionally draining part of my recovery. I can't help but think that there have to be ways to do this but I am missing something. I feel exhausted each day by the effort I put into finding a way to make sure we are able to survive this experience financially and getting nowhere. I am hopeful that I will have some luck this week.