The canvas

Sitting here at Tower getting my infusion…I had a scare today about an hour ago while getting the Abraxane that freaked me the f*ck out but more on that later… I opened up this blog and the editor told me that I had a post from last week that I never finished so I'll start with that first.

First of all, I want to give a special thank you and "shout out" to my beautiful friend Nandi. I haven't seen her in forever and out of the blue she asks me for my address….a few days later I got the special PEACE mug for my tea that I was so crazy about in Hawaii. I was so touched I started to cry. It was just so thoughtful and really made my day. I guess I'm not writing this blog for nothing! See, I get free gifts. Ca-ching!! Thank you Nandi.

So how are you? Everything good? Have you been watching Cosmos? Neil Degrasse Tyson is my hero. I love science. I forgot how much I love biology, physics, and chemistry; school was so much fun. So how am I? I am all over the place lately. Generally, I'm feeling run down. The fact that I fasted last week, got chemo, plus haven't been able to get back to a rigorous work out regimen don't help the overall picture. I need this ankle to heal so that I can get back to ballet and back to building muscle. I tried yoga last week the day AFTER I bumped up my melatonin to three tablets per night and it was a pointless session. I basically couldn't do much more than ujjayi breathing, stretching and lying down (emphasis on the lying down part). I was having terrible bone pain the past two weeks. I thought it was related to the ankle but since it was both legs it really couldn't have been. When I went for chemo last week my nurse practitioner Paige said is was related to the Abraxane. Apparently, bone pain can be a common side effect. This week, however, I am having less bone pain. I think the bone pain is related to the Xgeva shots. It's always very achy after I get that shot and then it dissipates over the month until I have to get another shot. I have been able to walk my neighborhood, starting out with shorter walks and building my way back up to the full distance with short stops along the way. Exercise is supposed to help the joint and bone aches so I'm trying to keep it up. I'm also trying to build up my stamina and endurance because I've signed up for the LOVE foundation annual walk!

Walk with Love 2014 for a Future Without Breast Cancer. May 18th at 10AM, right in my very own neighborhood in the Pacific Palisades. I hope we walk by my house. I did this walk two years ago and remember walking by our future house and admiring it. How fun it will be to walk by it now!!

I was trying to explain to someone the other day what being a cancer patient was like. Basically you just do what you have to do. I don't like it but I still do it because let's be frank - there isn't another option. Just like you feel when you know you're going to get a shot or the doctor is going to prod at an injury to check for sprains or breaks - you flinch, you feel dread, your fight or flight response kicks in and you hope there is some way to get out of it or away from the pain. When you realize you can't you just take a deep breath, suck it up and get it over with. That's how this feels. I still feel the way you would and do at the doctor's office. I still feel that absolute dread when I see the Chemo nurses taking out their packets with the huber needles, sterilization materials, dressings etc. I constantly take deep breaths, look away, try to trick my mind that the pain will be over soon. That soon I'll be back home and away from this place.

Fasting has become harder for me. This last one was really difficult. I think it was most difficult because it was emotionally hard. I kind of could care less about the food plus I was pretty nauseous last week too. I was losing faith that the fasting was having an impact. Looking at my blood work though it appears to be working. My blood work has remained stable despite how terrible I may feel at times. When I really think about what was bothering me the most, it is the balance of doing everything I can when I don't really know what is working. I'm trying so hard to be perfect all the time with supplements, fasting, exercise, diet, doctor appointments and follow ups. It's exhausting. Good thing I can remember that I am human. That I am NOT perfect. I am attempting to shift my type A personality. I know that I can take a beat. That I can slip up. Have an off day. Forget pills. Skip a work out. Miss an appointment. Take a nap instead. And feel OK about it. This is what I have been focusing on. Doing less. Doing only the things I feel I really want to or can do.

I had my Y-90 radio-embolization consultation for Dr. Marc Friedman at Cedars. He is very impressive and certainly put me at ease about this process. It will be a series of three procedures once they get done fighting it out with the insurance company for approval. They started two weeks ago with the authorization process. Once we get the go ahead I will have an angiogram to map out the path through my femoral artery to the hepatic artery where they will release the radiation to zap out of the liver tumors. They will start with the left side. Then they will take a four week break before they check out my blood counts, etc. etc. and then do the right side (which I'm curious about since the Abraxane is shrinking them)…

Today during my infusion I started feeling super cold on my right side and was having difficulty breathing. All of a sudden I felt super nauseous, couldn't take a deep breath and started having a panic attack. My nurse had to stop the Abraxane and take a break. 20 minutes later she started again with a slower rate and had to give me the steroids. Apparently, sudden on-set chest pain and issues are par for the course with Abraxane. It is likely that I will need the steroids again next week (which will be the last infusion for this cycle, yay).  It felt like someone was sitting on my chest, while sucking in liquid oxygen at a high altitude. I was very scared. I did not feel well and I did NOT like it. I'm going to get a chest x-ray next week. I want to make sure it was just the infusion and not an issue with my lungs.

Can I say it…FUCK cancer. OK, there I said it.

I saw my therapist Pam recently and communicated my emotional roller coaster and how very afraid I am of continuing treatment, how it has been increasingly difficult to recover after each infusion, and how the upcoming procedure scares me. I do my best to not let the feelings over take me but I still have to acknowledge that they are there and that they are very real. She explained that those dark feelings and emotions can be there and that they are a small part on a larger emotional canvas.
Our emotional canvas is a detailed and changing painting. There will be some dark spots but we can't let it over take the whole canvas. Recognize it is there and that it can grow and diminish depending on the day. Stay in the present moment. Like that lame movie I forced myself to finish watching with Will Smith and his kid, After Earth. The best part of that movie was the message that there is no fear in the very present moment. Fear is in the future or of not letting go of the past.

My fascination with death is becoming less of one with fear and one of acceptance. Yes, I know we are all going to die, blah blah blah. (I'm a little tired of hearing that from people who aren't dealing with a serious illness). And no I'm not saying I am anywhere near that point. I have faith that things are going to turn around for me. I'm saying that understanding and accepting death is a process. A true process that has to happen to achieve peace before you go. You start to see that when people who are close to you die, who may or may not be in similar circumstance to you. Were they ready? Were they scared? Were they in pain and ready to be free? This is a dark spot on my emotional canvas at the moment that I am working through. But I have 100 times more bright spots on my canvas to think about…

I took the kids to Disneyland on Wednesday kind of spur of the moment. Abby had a random day off and Leo is still on his spring break (their spring breaks don't overlap). It was a really fabulous day. Very exhausting but totally worth it. There was this one point after the dumbo ride and hat shopping at the Mad Hatter that Abby turned around in the busy plaza and took Leo's hand to walk with him over to the restaurant for lunch. I whipped out my phone and started snapping away because it was one of those moments that makes your heart swoon and fill with pride. I love them so much!!!

It's time for my last cold cap of the day for this infusion so I'm going to wrap it up. Fingers crossed that I hear from Dr. Freidman's office and can get started this week or next for the radio-embolization!!

Thank you for listening.
Love,
Jess