Sunday, September 4, 2016

Feeling Gipped....

For the past few days/weeks, I have been really feeling like cancer has stolen my life. I had my scan on the 29th, and my dr. appointment on the 30th to go over the results. I was feeling pretty confident - based on what I was feeling in my body, and the things that I could feel from the outside. Sadly, my oncologist was not quite as happy about the scan results. While I have made some great progress physically, and in most of my body, there were just a couple places that were worse than my scan in June before I started treatment. However, I know that those places have gotten smaller in the past few weeks, so in my mind, it wasn't really as bad. Still, it's hard to go in and think that you are going to get a happy face from your doctor, and then she's all Debbie Downer about everything - even though there were some major positives (which she pointed out later and agreed with me). It's sometimes hard to have hope when no one else around you seems to share in that. 

With the end of the summer hitting us right in the face, I've really noticed how much I have missed this year. Not once have I gotten in the ocean, not once did I get to make a sand castle with Lochlan or bury him in the sand, not once did I get to sit in the backyard with a fire and roast marshmallows, and not once did I go camping. I have spent so much time sitting, or in bed, or feeling gross, or in pain and I'm just hating that I'm missing out on so much. I love summer and doing things that are outdoors, and relaxing and calm, and I missed all that this year. I also feel like this summer Lochlan really came into his own being a "big kid," and I missed so many opportunities to help him grow and learn and have fun. I didn't get to play at the playground or take him to the zoo. We didn't get to go canoeing or hiking or splash in a waterfall. There are so many places I want to explore with him, and I just feel like that has been stolen from me. 

This summer has also been really hard because I have started to come to the realization that having more children is not going to be possible for me. My cancer has been exacerbated by both of my pregnancies, and - after the battle I'm forging now - I have to do everything to avoid another relapse. It breaks my heart that Lochlan is going to grow up without a living sibling. And even more, it hurts that he has had to play mostly by himself this summer because of it. Saoirse's absence is being felt majorly as I watch him sit in a kiddie pool full of dirt digging by himself rather than chasing his big sister around the yard. His face seems so sad, and I wonder if he feels like he is missing out, even though he doesn't really know any better. 

Parenting Lochlan has been a real struggle for me since he was born. I haven't been able to connect with him in the way I feel like I connected with Saoirse. I feel like I'm " blaming" him for my cancer, and at the same time distancing myself so that if something happens, the heart break won't be so bad. It's crazy - and unfair - and I HATE myself for it. I spent my whole life growing up just WAITING to be a mom - it was my career goal, and my life goal. And now that I have gotten my wish, it is trying to kill me - literally. It is such a surreal feeling for me to want to send him off all the time, and spend my time doing "nothing" or doing something that doesn't involve parenting. I wish that I could separate his existence from my cancer in my mind, but so far, I just haven't been able to force myself to do it. 

Round 4 is in the books. I was hoping that by this time I would be in remission and that we would be doing a couple rounds to just make sure it was all gone. It's not the case, and I'm stuck in a holding pattern still until we see more results. Luckily, many of the major physical issues I had for the first two and a half cycles have subsided, and I am feeling like I can be more like myself and am more able to do some normal things. I am hoping that things keep reducing, and I keep feeling well, and I can start to do some of my normal activities. I need to feel like a person again - not just a patient - and I hope that maybe I can draw myself back to life. 

7 comments:

  1. Kezia, I don't know you personally, but I read your story on CNN a few years ago and have been checking in on your blog ever since. I'm so in awe of your courage, strength, honesty, and realness. I had tears in my eyes when I read your experience as Saoirse and Lochlan's mom. My prayer for you is that you can let go of the unnecessary guilt you carry. We moms are very good at feeling guilty about the slightest things. You have been dealt very difficult cards. And despite all of that, it's obvious to a total stranger how committed you are to your family, your children in particular, and how fiercely you love both of them. Lochlan may never get to meet Saoirse in this life time, but you're doing everything you can to make sure he knows his sister. What a lovely way to honor her life and her memory! You're doing what you can. It's not what you had planned or wished for, but it is what you can do for now. It won't always be like this and when you can do more for and with Lochlan, you will. You're doing what you can and that's nothing to feel guilty about. You may not be able to play with Lochlan the way you both want to, but that little boy knows his mommy loves him. There is no greater gift you can give your children than to send them into the world knowing they're loved unconditionally. You are doing just that, I can read it and feel it in your words. You're an excellent mother. Not the kind of mom you had pictured, but an excellent one nonetheless. Please take that to heart and let go of the guilt because it's not yours to carry.

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  2. I read your blog occasionally, this latest post makes me concerned for your son. You're showing him that a mothers love means holding him responsible for your illness and never measuring up to his deceased sister. Also you say you withhold love to help lessen heartbreak in a worse case scenario. I dont know what services are available to your son, but whatever they are I hope you're taking advantage of them.
    Your situation is HORRIBLE. But NONE of it is the fault of your son, who you and your husband made the choice to bring into this world.

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    1. Your comment is very hurtful. What you are saying is the opposite of the truth. You really need to put yourself in this beautiful ladies shoes and show compassion. Her son is loved and although she may be feeling these things, she is being honest and real. Her son, I know feels loved. She is in a situation that is very complex. Her emotions are something that most would feel in her situation. All her son needs is to know that his mom is there and loves him. She is expressing her struggles and emotions which is very hard and very brave. She needs all the support she can get and your comment should simply be deleted.

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  3. Please DISREGARD the above statement from someone who probably has not dealt with or knows much about dealing with a chronic illness. What you are experiencing is unfortunately normal for your situation. It's apparent you are a great mom and doing the best you can.

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  4. Yes, disregard that awful statement from the second "Anonymous". It is clear in the way you are writing that you are aware of your struggles, all of which are TOTALLY NORMAL under the circumstances. Parents who have lost a child and/or live with a life threatening illness often struggle with these issues. The fact that you are aware and open about things makes you stronger. Please don't let the trolls get to you; it says so much more about this person that s/he would attack you and minconstrue your open and honest accounting of what are entirely normal feelings. I am wishing you the best, as are the majority of people reading your blog.

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  5. Kezia I think that you're doing an amazing job as a parent. It takes courage to be able to examine how and why you feel a certain way and by you writing about it you've already done more than most people ever would. What you said makes perfect sense to me and I can't say that I wouldn't feel the same way. I just want to remind you that spending your time being angry or sad or even scared isn't really living and from all I've ever read in your blog posts that isn't at all who you are. You love living, being part of everything, trying everything, and more than anything I want you to be you and find joy where you can just like each of us tries to do everyday.

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  6. Kezia, I stumbled across your blog and I felt an overwhelming sense of grief for you. I honestly can relate to your struggles in regards to your son. I have 2 children. With each birth I have suffered with post partum depression. The birth of my second child changed me completely. I often wonder why I have a hard time connecting with him on certain levels. His father and I are divorced and I often see myself sending him to his dads house instead of being the mom I wish I could be to him. It is a hard cycle that I am stuck in. I do not have cancer but I suffer mentally. I tell my son I love him everyday, I know that I am not really in the right condition to care for him the way I want to or how I imagined I would be as his mom. If I would have known that having another child would mean that my depression, axniety would be almost intolerable I am not should I would have made the decision to have another child. I HATE it. I simply do not have the energy to give him all that he needs. He is now old enough to play sports and be active but I cannot physically do it alone. So I understand the pain that you feel when you look at your child and realize that you are missing out on precious time you can never get back. You are doing all you can do. Your son, knows that you love him. As he gets older he will understand the reasons why you have not been able to do what most other mothers are doing. Cancer sucks and losing a child to cancer as well simply has you grieving and fighting your own health battle. Do not for a second feel that your son does not know that you love him. He does know. Please do not blame yourself, you have so much fight in you and you are a wonderful mother. Please remember that you did not choose this. You are doing the best you can with what you have been dealt. Try to stay positive so that your body can have the energy it needs. Stress and being angry is taking a toll on your body. Keep up the fight. At this time, your son is getting what he needs. Your presence and love is what matters most. I am praying for you and your family. I am not religious but I do believe in the gospel and god has is arms wrapped around your family. Much love!!

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