Cancer is evil and a lot of the time I feel like the choices I have to make are not really choices. They are picking the one that I feel is better at the time, or picking the one that makes me feel better mentally, but not necessarily physically. For example:
-Chemo. To imporve the odds of 10 year survival it was recommended that I undergo chemo and radiation. Seems like a nobrainer right? Pick the chemo and radiation. But then you get this super long list of side effects and they are pretty scary. Then you get the lesson about what chemo does. It's posion that is pumped into your body to destroy any free cancer cells that are roaming your body. But it destroys them along with the good cells in your body. It's like turning the light off in a room by blowing the room up. You are destroying a whole lot of good stuff too.
-What kind of chemo? So now I have decided that I will do the chemo, regardless of the side effects, and then they ask me if I want to participate in a research study. My first reaction is no, I want standard drug care that others with my type of breast cancer get, but then they share the study with me. It is nothing new drug-wise, the drugs are standard, proven cancer drugs, but the way they deliver them is what is different. There are 4 arms of the study and I would be randomized into one of those four arms. So instead of doing 6 weeks of standard chemo, I could end up being randomized into a group that takes up to 29 weeks to complete. I decide to do the research study as it is drugs given over a longer time that will increase my odds of survival, and of course I get randomized into the longest study. Good in that I get the longest treatment possible, bad in that it will take me so long to complete treatment.
-Reconstruction. At the time of my double mastectomy the doctors did not recommend doing reconstruction since I needed to undergo radiation, so I got expanders put in. Good in that it gives me the ability to stetch my skin and get the surgeon skin to perform the reconstruction, especially if radiation destroys some of the skin, but bad in that these things are uncomfortable. They are not me so they do not move and stretch with me very well. They make sleeping on my side difficult, and they make laying with my children difficult. It hurts when they rest their heads on me, but it is a hurt that I endur as it hurts too much mentally to not cuddle with my children. It's also hard knowing that when the reconstruction surgery is done, I will have another 6 weeks of not being able to pick up anything heavier than a gallon on milk, and again relying on people to do a lot for me.
-Ports. I got a port put in so that I wouldn't destroy the veins in my left arm, the only arm that blood can ever be drawn from, or blood pressure taken from, because of the number of lymph nodes taken from my right side. Seems again, a no brainer to have this thing inserted into you so that blood draws and chemo infusions are easy, but no. It is a bumpy thing that sticks out of my upper chest and itches and causes pain at times. It shows with most of my shirts, it made me sick when it was put it, will probably make me sick when it is taken out, and when my kids accidently elbow me in it, it hurts. It is also on the side that I hold my kids when I carry them, so it gets bumped and elbowed a lot.
-Hair. I miss my hair. I knew my hair would fall out and I thought I will be ok with it. In the grand scheme of things, this is not the worst thing that is happening to me and it will grow back. Plus, not shaving my legs will be kind of a nice break. Well, as is the norm, nothing is normal or pedicatable. While all the hair on my head fell out, I do have a little stubble on my head, just enough creep me out when rub my head. My eyelashes have just about all fallen out, my eyebrows are very thin, but still hanging in there, and the hair on my legs, it's still growing, slowed down considerbly, but I still have to shave.
-Expense. Cancer is expensive and I am fortunate in that I have a lot of very generous friends and family that have organized fundraisers in my honor. As much as I appreciate and need this kind of help, it is very hard to accept. It is hard to accept help when I have always been able to provide for myself and now I can't. I can't work with the treatments and the side effects, and I regret stopping teaching sometimes because now I would have insurance and a job to go back to when I felt better. However, I would not have had the experiences with my children that I have had the last 5 years staying at home with them. Plus, who is going to hire a bald person that looks sick?
-Help. People have not only been kind in donating and fundraising for me, but they have also been so kind in making meals for my family, taking my kids on playdates, taking me out and cheering me up. It's so wonderful that everyone is so generous with their time, treasure, and talent, but sometimes it is so hard for me to accept- especially when I am the one who is used to giving and not recieving. Sometimes people drop dinners off and I feel so guilty, like I really could cook a meal, and then a break happens and I realize just how bad I have been feeling and just how much I really did need those meals as it would have been very hard for me to shop and prepare that food for my family. It's also hard since I know that I will never be able to repay everyone for all thier kindness, but as I have said in the past, I will continue to pay it forward whenever I can.
But having cancer has taught me a lot of things, and has given me a lot of gifts. Weird sounding huh? But other than your wedding, have you ever stood in a room full of people who were there because they truly cared about you and are ready to support you? I have. And it was wonderful to know that I have so many people that are there for me, not only when times are good, but there to pick me up and carry me through the bad times. It's wonderful that when I go somewhere, I usually see someone I know and they are asking me how I am doing, how my family is doing and telling me they are praying for me and thinking about me. When I first was diagnosed I would dread running into people I knew. Worried they may be thinking that if I was well enough to be out and about, I was well enough to make meals, take my kids places and do the things they were helping me do. Then I realized that was not what people were thinking and that they truly realized I needed help and wanted to help me. I also realized I needed to try to continue my every day life as normal as possible for many reasons. First I told myself I needed to do this for my kids, then it was for me, to keep my spirits up and now it is for everyone. I want to show myself, my kids and the world that I value the things that I do, how I spend my time is a choice. Yes, I get the things I need to get done done, the errands, the things around the house, but I also make better choices about what I spend my time doing. I do things I enjoy along with the things I have to do. I make the choice to go to activities that are important to me, to see the people that are important to me, as well as to do the things I know I need to do. Yes, there are things I that I'd like to do, that I just can't. I am too tired, or too sick, or too busy with treatments to do everything I did before, but I am learning to be ok with that. I am learning to say no, and not feel guilty about it. I am learning to not take on so much, to schedule down time with my family, spend time with my friends, and find a way to participate in things that I value, but in a way that I can make sure I am not taking on too much. When I make a committment to do something, I have to follow through, so I am learning to not over commit myself, something I tended to do before cancer.
I am also trying to enjoy myself more, and live more in the moment. I always loved spending time, as well as going places, with my Grandma Kutlzer for whatever we did, we always had a good time. I was thinking about her recently and wondering why I have all these good memories of things that were really not that exciting growing up. I mean, my grandparents took me on a lot of exciting trips, and did a lot of special things for me, but they also did a lot of every day things with us. I realized that no matter what it was that I did with my grandma, a special occassion or just an every day activity, she always had this smile on her face and this twinkle in her eye. We could go out to the fanciest dinner, or she could come over for take out chinese on a Sunday afteernoon, and she would have the same smile on her face. I realize now that she was enjoying herself, truly enjoying herself and that is why she was so happy. She was in the moment, living, caring and being who she was. She wasn't distracted with what she needed to do at home, what else she could be doing, or what other people were thinking. She lived honestly, did what her heart told her was right and cared about people. She valued her family and her friends. Had a soft spot for animals, especially strays. Loved the beach and the water. Cared about people and found happiness in every day activities. Maybe that is what cancer taught her, and maybe that is what cancer is teaching me too.
1 comment:
Beautifully written, Kari. You should think about writing a book about your journey.
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