2 years already…

11872162_1860341457525079_4400634516886261131_oThis post has been long overdue! I have started many posts since my last one but I never finished any of them. I have been so busy and not to sound too cliche,  I have just been busy “living life”. This is the first summer where the boys weren’t in back to back summer camps so we got to hang out with each other more. We had a really nice summer, enjoying a fun and relaxing vacation with my parents on the west coast of Florida and just hanging out. My parents who spent 3 months with us, helping in every way imaginable, went home at the beginning of July and now my dad is dealing with health issues of his own. I wish I could be there for him and my mom like they have been here for me, but right now I need to be here and staying the course of my treatments.

I can’t believe it has been 2 years already. Reflecting back on the last year, things have been quite hectic but I think I have been pretty good at trying to keep things as normal as possible. Having either set of grandparents with us in the most challenging times has been so precious. Between radiation beads to my liver, a surgery to remove my gallbladder and 1/3 of my colon, and restarting chemo it has been a challenging year medically. At the same time though, I had the chance to travel to DC for a colon conference and be part of a panel on the emotional aspects of colon cancer, our family had an amazing spring break skiing in West Virginia, and an amazing week in Sarasota this summer.

The past few months have been interesting to say the least. Stepping into the world of “energy work” and doing all kinds of things I never thought I would be really open to has opened up my eyes and my heart to things that are hard to describe into words. The more I delve into this world, the more I learn, and the more I understand and get to see things I wasn’t seeing and realizing before. I really need to thank my chiropractor for that. Ever since I started this work, I am feeling more at peace and am able more and more to be in the moment. I have always preached the benefits of “mindfulness” but being able to live in the moment is much easier said than done. I also “got this” on a much deeper level during a Rapid Resolution Therapy session with Dr. Connelly who I continue to see from time to time. I also met an amazing healer from California and through him, I got to meet other healers from all over the world who have been very kind and generous. I would say that reflecting back on the last year, I now realize how amazing, giving, generous, and caring people can be. I have always been ultra independent and never really asked for help. I would take things on, let them build up, and often ended up being overwhelmed just to prove that I was capable of doing it all by myself. This year I have opened up a lot, I have let myself be more vulnerable and accepted help from people. I have experienced the incredible generosity and love all around me.

We are just coming back from camp Kesem where I got to be “Lululemon” the mental health professional again and we had an amazing week. I am so lucky to experience camp from my perspective, as a professional, as a mom, and as a cancer fighter. This year I got to bunk with the admin staff, all students of UF. They were so nice not to make me feel too old and it was really nice to get to know them more and see all the work that goes on behind the scenes to make camp such a success. Once again I was so amazed to see these extremely caring young adults wanting to make sure the kids had the best week of their year. It always melted my heart to see the tough guys bend down to tie a kid’s shoe, give a piggy back ride in the extreme heat to a little one so they could keep up, and just being sooo patient with kids being all over them alllll the time! I was also impressed by the kids at camp. I was talking with a 16 year-old boy who loved baseball and I told him that my son “somebody” (that was Sebas’ camp name this year lol!) also loved baseball and I introduced them. Sebas was so psyched that this other camper sent him a letter through camp mail. The fact that this 16 year-old boy would care and take the time to write a note to this 9 year-old kid he barely knew was very touching. He even sat with me to give me “tips” for my son if he is serious about baseball. He shared things like, he can’t party, play video games all night, and needs to exercise and eat healthy foods. I was a camp counselor for many years growing up and I know how kids that age are and behave. These kids were different, they were not the typical more self-absorbed kids. They were so caring and understanding of each other and I can’t help thinking that it may be a result of having a parent who has or had cancer. They have to mature faster, learn at a young age that life is fragile and precious and the importance of enjoying each and every day. I am very grateful for this experience and feel that the bonds with our Kesem family grew tremendously.

I am not sure what to expect this coming year. I am learning to not expect anything and to be ok with not being able to plan anything ahead of time. There is so much I want to do, chemo gets in the way of me being able to do everything I want to do! I am getting involved with a paper on the psychological implications of living with stage 4 cancer, I will be again on a panel at a colon cancer conference in Arizona at the end of October and I am trying to be a presenter at another conference in December in DC. I became a level I Qi-Gong instructor in June and I want to start a class for people dealing with cancer. I also want to get back to writing my book… so much I want to do! and of course continue to enjoy being with my kids and husband who have been so supportive throughout the past 2 years. My kids and husband are incredibly strong and I do draw my strength from them.

Medically I am not sure where I stand. My last scan ended up being a total fiasco. I find the world of radiology quite frustrating. When my doctor finally called  me to give me the results, he informed me that the radiologist had compared my scan to a scan done one year ago!!! I have no idea how this can even be justified when I had a scan done just 3 months earlier. I understand that I have scans done both locally and in Gainesville and it can make it hard for the radiologist to accurately compare the images, but still, really?! I had reluctantly decided to get my scan done locally as I did not feel like driving a total of 6 hours just for a scan but I ended up regretting it. I really like my new oncologist and he had his “favorite” radiologist review the scan again. The weird thing is that the spots on my lungs are not detected with a regular CT scan, they have to use “MIP” images   (maximum intensity projection images) to see them. I just don’t understand why we have to beg the radiologist to use the MIP imaging in my case as we have already established that the nodules are too small to be picked up by a regular CT scan. Well the good news is that the nodules in my lungs have remained stable since the last scan. I had to wait for my beloved oncologist at Shands to get a “real” update on my liver. Bottom line is that my GI oncologist wasn’t sure what he was seeing on my liver and presented my case at the tumor board and they decided to send me for a PET scan. I had it done yesterday while up in Gainesville and hope to get some results soon. I also reconnected with the local interventional radiologist who performed my initial liver biopsy and he has been an angel, extremely compassionate and generous of this time. He offered to review my past couple of scans and explained that they were probably wanting a PET scan to look at one specific spot on the liver and he explained that if it is only a couple of spots that are active that he could do “microwave ablation” to zap those spots. We are waiting for the results of the PET to decide what to do next. I feel that I have a really good team now and feel confident that they will keep me healthy for many many many more years….

Until then, thank you all for the love and support. I feel you all with me. Cheers to many more years!

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4 thoughts on “2 years already…

  1. My hero! I stalk Facebook and your blog! Was getting ready to do the old fashioned text and I read this! Always here for you. Please let me know if you have time to catch up over breakfast or lunch!

  2. Dear Rachel, It might not be much , but I’m still keeping you , Freddy and the kids in my prayers morning and night. Louise and I are positive that you will pull through very…very soon. Our warmest regards.

    Sent from my iPad

    >

  3. Good to hear from you. I am thinking of you also when you don’t blog 🙂 … good to read that you feel us with you bc we are XOXO

  4. so wonderful to know that you’re feeling so good Rachel – both emotionally and physically! you, fred and the boys are always in our thoughts and prayers!

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