Life is short, you don’t know what might happen tomorrow, so LIVE it, LIVE ALL OF IT!

Life is short, you don’t know what might happen so look up. Don’t want to miss out on ANYTHING, Day or Night, like this beautiful dragon fly that was riding the thermals generated by my skylight.

So true. I really don’t want to sleep now. It’s been 14 years since I was diagnosed and I still don’t like sleeping. Don’t get me wrong… I LOVE to sleep. I don’t like missing out on anything. I love seeing the silver moonlight light up the live oaks in our yard and seeing the cattle moving. I like looking up and seeing the International Space Station whizzing around the earth. In the morning, I like seeing my dogs stalk squirrels and chasing birds. I like seeing the sun come up. I like being alive. Sleeping is one of my favorite pastimes but going to sleep and voluntarily being in a mock coma for 5-8 eight hours.. I don’t like that. Ever since cancer got so personal with me. I just don’t want to miss out on ANYTHING, Day or Night, like this beautiful dragon fly that was riding the thermals generated by my skylight.

I am not a “Survivor”, don’t you dare label me!

I really do and always have detested the label “survivor”. Yes, I survived cancer. But, I am not a survivor, I am a more than just a survivor. Cancer was God’s gift to me. I look at it as if He smacked me upside the head with a hardwood 4×4. Cancer made relationships clearer, taught me that it is necessary to love for and care about myself, to sometimes put myself first, taught me to get toxic people out of my life, to have some fun, to laugh, cry, to share. Cancer got my life back on track and straightened me out about what should be priorities in life. Since I “survived” being remolded by the trial by fire that is cancer, life has become much more vibrant and precious.

I am more than a survivor. The survivor label is so limiting. It sounds like such an accomplishment. Yes, it is an goal to accomplish, but it isn’t and should not be a cancer victims end goal. Life can end at any moment. Maybe cancer, maybe a bus, maybe a random stoke of lightening. It would be really sad to only be remembered as a survivor and also ironic. None if us will survive in the end that is one sure thing in life. What matters is how you choose to spend the time you have on earth. Surviving cancer is a rebirth, it is the beginning of the rest of your life, and it means you might have more time left than you thought. Use every moment of it.

I am a vibrant being who moves forward in life, I seize the day! I am not just a survivor. I’m more!

This post was inspired by a quote I saw on an American Cancer Society image from a cancer survivor named Sarah. Sarah also doesn’t like the label survivor. I have felt this way since day 1 of finding out I had cancer, I didn’t want to just survive, I wanted to live.

I have cancer, I’m not dead yet!

“I have cancer. I’m not dead yet!” was a statement I made many times before, during and even after my hospital stay at MD Anderson.

I am talking about it now because some of my friends are experiencing major illnesses including cancer and it is difficult for them and their families. I hope by sharing my experience, I may help them and their families avoid some of the unnecessary stresses that we went through.

One of my family members would answer questions for me when my friends or doctors would ask questions to me. It was so bad that I couldn’t choose my food, apparently having cancer meant to some people who I couldn’t make any of my own decisions. I couldn’t talk to my doctor and nurses without being cutoff and interrupted, answers that were not mine nor accurate were given to the doctors. I felt like that family member thought I was helpless and like I was already dead. I was exhausted from the cancer and from the surgery and healing processes going on in my body, and it was even more exhausting trying to overcome the family member to communicate to my nurses, doctors, orderlies. I had my speech, I had my brain and I felt like I was being totally dismissed and disempowered. It was disrespectful of me, it was a horrible feeling. I tried to convey my feelings to that person, and it seemed as if I was heard, but it kept happening. At first I questioned myself… was I sicker that I thought?

Cancer is pretty icky, but seriously my cancer was not infecting my brain speech center and I could talk. So… Nope, I wasn’t incapable of communicating… I was just slow at it because I was tired. I got frustrated of being prevented from communicating. That frustration grew and I got angry. I was not a nice person at times. Then, finally I cried for real, out of the frustration and anger. But anger didn’t help solve anything. If anything it made things worse because I appeared to be “losing it”. That just made my family try harder. It was a vicious cycle.

Finally one day, when that family member was in the bathroom, I called the nurse into my room and asked her to ban that family member. She was a bit incredulous. I asked her to get a social worker or family psychologist and have them come, I wanted to speak to the shrink before that family member could come back into my room. I felt horrible, but I had to so something.

Finally, I was able to explain my feelings and the counselor was able to talk to my family. That family member expressed that they were only trying to care for me, to help me rest, to take the burden off. The counselor tried to help that person realize that even though, Yes, I was tired, and Yes, it took me a little longer to answer the questions, that they were not helping me and that they were not respecting me, they were making me feel totally helpless and frustrated and thus angry. My family felt totally helpless too. They were just trying to help.

Disempowering a patient who wants to take part in their own care can be very harmful for their healing process. You may not know you are doing it.

The counselor explained that behavior was actually making me feel sicker and more helpless than I was. The counselor explained that my family needed to pay attention to me when I told them, “I can answer”, “stop talking for me”, “I have a brain, stop talking. I want to make these decisions”, or “please go away, I want some quiet and privacy”. The counselor helped me realize, I was the one sick and I was the one that needed rest and respect and that it is OKAY to want alone time. And, I could nicely ask for the space, that I shouldn’t feel like I was a bad person because I needed it and finally that it was definitely ok to demand that and get the nurse to help me reinforce it.

This situation really is about you, the patient, and what you need.

The situation got a little better and in the future when I got tired of it all, I politely asked my family to leave my hospital room and they listened more often. Sometimes I asked them to get me a drink, or some food, or something else. Sometimes I simply asked them to go take a break for a while. Usually they respected those requests. But sometimes they ignored my polite verbal indicators that I wanted some space and so once in a while I called the nurse. We got through it.

I believe, we actually built more respect for each other because of it. I don’t doubt they love me. I also believe they finally saw me as an adult for the first time (I was in my late 30’s when this happened). I learned it’s okay to need people and it is also sometimes necessary to get a third-party (like a counselor) involved, when communication breaks down. It can really improve situations. Hospitals have specialists just for these situations. Use them, that is what they are there for. This situation really is not uncommon at all.

What radiation treatment did to my eating

I think my family and friends thought I went cuckoo when I was undergoing radiation treatment. I’m normally having, as Jimmy Buffett put it, a carnivorous feeling. I like good meat, beef, pork, chicken, alligator, squirrel, frog legs and other savory delectable muscle type things. I’ve tried some pretty weird stuff and if it’s mammalian, avian or reptile, I pretty much like it. However, radiation treatment does some major mojo on your body and I have a theory about it. I’ll tell you frankly about both.

Seriously if you have ever undergone radiation treatment, you would know that certain foods just taste like rotten crap. The docs are glad if you just eat anything at all. My treatment team warned me that my tastes would change for a while. That I just needed to keep eating. They basically didn’t care what I ate so long as I got protein, fiber, carbs, etc. They didn’t want me to get weak from not eating at all. They said even if I couldn’t eat balanced to just eat if I found something that was palatable. Palatable meant that you could force yourself to swallow it.

Turns out I didn’t have that carnivorous feeling at all. I wanted green veggies and lots of them. Meat though… ewww… it tasted three weeks spoiled and smelled worse. I craved dark green vegetables. Spinach, broccoli, kale, green beans, that weird stuff decorating your plate in restaurant, you name it, if it was green, I salivated. Nuts I could eat ok sort of, but not too many at a time. Milk tasted days old and about to expire, yogurt was okay, meat was icky icky icky (three times to make sure you know how icky it really was). Ensure and Protein shakes could be forced down without the desire to vomit. Basically anything in a more natural form that was primarily protein didn’t taste good.

My theory… Radiation kills new growing tissue. What is cancer? Cancer is run away growth of tissue that isn’t supposed to be growing and replicating itself. Radiation therapy kills off these new growing cells. There is good and bad that comes from radiation therapy. You can’t just have dead stuff building up in your body as that is going to cause problems too. What happens to dead cells in your body? Your body has to break them up and process them and then excrete them. Basically your body has to go through the same process as if you’d eaten a huge steak dinner. You just get to skip the stomach and digestion part of the deal. All the tissue being destroyed by the radiation treatments was dumping all kinds of protein by-products and toxins in my blood, so basically my body via my taste buds and nose were telling my mouth, “Enough of that stuff! We got plenty to deal with, We don’t want anymore coming in”. While my stomach was empty and telling my mouth, “I’m hungry”.

I really did eat a lot of vegetables. I do like vegetables. But not as much as I did while I was undergoing radiation treatment. I developed cravings for things my body needed to help rid itself of the extra destroyed proteins floating around. I craved things with antioxidants like dark green leafy vegetables especially fresh ones. I even liked (drum roll please) baby vegetable food. Those snack jars are perfect quickie snacks on the go. I have to admit, the baby creamed peas that were disgusting and made me spit up when I was a baby are still damn disgusting. Fruit was great too, fresh fruit even better. I did learn that apple sauce and juice in large quantities are laxatives. So variety in moderation was the spice of life.

Have you ever eaten a Cherimoya? You should try it if you can, kinda a peachy pineapple flavor in a creamy fruit. Funky looking thing though. I haunted the Whole Foods and Central Market grocery stores looking for things that were palatable for me. I found stuff that I really like to this day. Cancer will give you gifts if you are open to seeing and experiencing them. Cherimoya is one of the gems.

Words to live by…

When I diagnosed with Stage 4 Liposarcoma, my world literally turned upside down. My family completely freaked out. I don’t think a lot of people talk about their experiences as the person who has cancer. But I will if you ask. It isn’t easy. But the outcome on the other side can be better stronger relationships and a lot more respect for each other.

I think cancer is harder on the family than on the person hosting it. And their difficulties handling it make them want to lean on you, when all you are trying to do is survive and understand. My personal daily measure of “support” (I called it my bucket) got really empty at times.

When you are first diagnosed, everyone seems to know what you “should do” and they do not listen to what you want to do. It’s like you are either already dead or suddenly incapable of any thought or action. Let me tell you, that just because you have invading cells puddled up and hiding in your body, you are NOT dead yet. You are NOT incapable, You are YOU! You need to stand up and have a voice and take care of yourself EVEN IF you family disagrees with your choices, and ESPECIALLY IF they won’t listen to you. It’s your body, you are hosting the invader and you can feel it’s effect. They can’t. This is one time in your life when it really is ALL ABOUT YOU.

Some of the most horrible things to deal with for me were:

  1. Some family members treated me like I was already dead
  2. Some family members would speak for me like I wasn’t even in the room, even though the conversation didn’t include them
  3. Some family members were so wrapped up in the idea of creating memories with me for when I died, that they didn’t consider my wishes or limitations
  4. Some family members who didn’t do the research on my disease thought they were experts and knew better than myself and my doctors about how to cure me
  5. Finding out who my real friends were
  6. Finding out that non glamorous cancers do not get much research funding, while others glamour types are over funded

Some of the most awesome things to happen to me

  1. Building a stronger relationship with my family
  2. Gaining respect from my family
  3. Finding out who my real friends were
  4. Meeting some of the most awesome medical personal in the world
  5. Being able to use my knowledge learned during 14 years of undergrad work in my multiple majors (I did a lot of pre-med biology classes)
  6. Cancer got me out of my shell and now watch out world!
  7. Life is short, you don’t know what might happen tomorrow, so LIVE it, LIVE ALL OF IT!

I once heard a fabulous blues song in smokey little blues bar owned by a dentist in Oklahoma city. I  learned that it was by John Coltrane and the chorus goes like this.

Sing hard, laugh hard
Give love a try
Work hard, play hard
I’ll sleep when I die

Shortly after my diagnosis, that chorus came across my view again. It’s been my motto ever since. Through cancer treatment and ever since, they have been some of the words I live by.

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