OMG notes from the real world

I am trying to compose a post to recap this weekend and whatever I say just isn’t enough so I’m guessing it will get broken down over a few entries. After getting home last night, it’s amazing how quickly the “real world” comes back to get you. I miss the conference already. Here is a quick recap:

The Good:

I can’t even express what it is like to be around other survivors. Most of the people I know who are survivors are much older than me. I still feel a connection with them, but it’s just amazing to find people I have more in common with. I finally feel like I have support.

Being here makes me feel so empowered to go home and create something for those who are going through this now, or will in the future. It makes me want to have this feeling all the time, and help others get it. Before coming here, I felt like I was focused on breast cancer. That is what I have, so that’s where the support is needed. But now I feel like it’s about the age. Young adults are so underserved. I want a safe, supportive place for people this age to not just get support, but get treatment. It sucks going to the infusion center and being the only one under 70. That’s the way it was for me every time. I know that my surgeon and oncologist had patients my age, but I have never, ever seen one in the office let alone at any support groups. That needs to change. For everyone with cancer, not just my type.

The Bad:

I realized while I was here that I am having some symptoms that I had underestimated. I knew I had chemo brain, but meeting so many people in such a short amount of time made it really clear how bad it is. In my world, I see the same people and go the same places for the most part. I knew I had issues remembering words, but there were people here that I introduced myself to who told me we had talked for pretty long periods the previous day. I didn’t realize I was having lapses like that. I believe this is caused by chemo and there are doctors who work to identify these issues and improve them so I will be looking into that.

One of the sessions I took yesterday was creative writing. I found it so helpful (even if my writing is not immediately improved) and wanted to share one of the exercises. The exercise was to spend 10 minutes writing about the biggest blessing we have had during treatment and to use a verb from our previous lesson. I decided to write about my kids and the verb I selected was happy. Here we go:

My kids are always the biggest blessing in my life. They make me happy when everything else is falling apart. Somehow singing to them and rubbing their backs at the end of the day just brings me back to a safe, sweet place. A place where I remember laying on the couch and having my mom sing You Are My Sunshine while stroking my hair as I fell asleep. Or blowing warm breath into my ears when I was miserable with an ear infection. Those memories bring me back to a place where I knew I was safe and loved, a place where I was happy and I never had a doubt that everything would be okay. I hope that my kids feel that way. I hope that they grow up knowing how much they are loved. I think they have been my biggest blessing because not only do they make me happy with their love every day, but they bring me back to a place before cancer. A time when everything made sense and there were no dark places. Nothing that is so dark and scary that it hurts me to even think about. They are everything good in me and I can physically hold on to that goodness. That happiness. And keep it together one day at a time.

I am writing that down here because I want my kids to be able to read that when they are old enough to read this and understand how much they have helped me through this. Being strong for them and putting on a brave face has been the hardest thing I’ve done a lot of days but it’s kept me going. Thinking of leaving them is really the darkest place my mind goes and it is so hard for me to even process that thought.

Obviously I am still in treatment, but in a few more months I will be done. That does not however mean that I am done with cancer. I think that is an area that the general population has very little understanding about. You don’t just have surgery and get better. You don’t just finish treatment and go back to the person you were. That person is quite literally gone. Hopefully the person left in their place is better, but the treatments I’ve had will leave me with long term effects. These are not only emotional but physical. I’m sure I’ll get into that more in the future as I experience these.

This morning I had my dry run for radiation. I spent about 90 minutes getting lined up precisely, getting tattooed and being somewhat uncomfortable. But, it’s all done and tomorrow I start radiation. I know that most people don’t understand the difference between chemo and radiation so I will dedicate a post to the process and explain everything more in depth.

I also had my follow up appointment with my oncologist from my final chemo. Unfortunately my blood work was not good at all so instead of my three month follow up I will be seeing her again in 4 weeks and 8 weeks to have my blood rechecked. Hopefully everything will come back up. The chemo has a cumulative effect so the numbers are worse each round and the cocktail I’ve been on for the last six rounds is especially hard on the bone marrow. She needs to verify that the counts come back up as expected and my bone marrow is functioning properly.

I was also able to speak to several people at the hospital about the Stupid Cancer summit. I had some great responses and am encouraged that some people will be able to have help earlier than I did. I also called and spoke with the newly diagnosed patient I spoke with last week. She is of course still completely overwhelmed but I always think it helps to have someone in your corner. We have all of the same doctors and is scheduled for the same surgery I had in a couple weeks. I am hopeful I can at least help ease the transition she is facing. Cancer sucks.

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3 Responses to OMG notes from the real world

  1. Laura says:

    A great update. You have a lot to share and sometimes it’s hard to wrap it up in a pretty little blog post, isn’t it?! Looking forward to hearing more about the Stupid Cancer summit you attended in LV. Does sound interesting and like a positive experience for you – that’s wonderful! The younger population impacted by cancer does have quite a bit different set of expectations, worries, stuff to deal with, etc. and I’m glad you’re linking up with others in a closer age range. Doing the same has made a marked difference for me, too.

  2. I really liked your creative writing entry about happy – very moving. My mother had breast cancer and is a survivor of 4 years now.
    Healthiest blessings,
    Suzanne Andrews
    Host of Functional Fitness on Public Television

  3. Sue Joyce says:

    🙂 Love you!

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