Thinking about Life - Struggles, Cancer & The Future

November 11th, 2017 

 

I find myself up, restless and unable to sleep with so much on my mind... But I am enjoying the relaxation time in my infrared sauna as I think and write.

I have come such a long way, faced more than I ever thought I would. I have lost in many ways... Life, friends.....

I have gained so much more. I don't know where I would have been without the amazing few people I have in my life, had I never had cancer, it's possible that I never would have met them.

Just like my father, had he not died when I was 2 of cancer, I probably wouldn't have been in California, perhaps I'd be in NY. If he hadn't died, I may not have had the awesome little brother that I have, the additional father that I have and the exceptional extended family that I have and that I grew up with. If he didn't have cancer and I had it, who knows where I would be. My dad, had he survived would have been 95 now. Yea, he's a lot older than my mom. I think she was 32 when she had me and she "Believe it or not" just turned 70. Not a day goes by that I don't think of him, Not a moment.

I write all this because my brain is going a mile a minute, especially since I slept all day and got nothing done... So I find myself circling and writing. I hope you like what I write so early in the morning..

When I think about the turmoil, the stress, the every single moment of what I experienced having cancer. No matter how difficult, how heart wrenching, how crazy. I did make it. I did persevere. I DID turn my experience into something greater than myself. #UCAAN

I think often of the ways that "The Cancer" Impacted my life; some good, some bad. But somehow I can say that they were meant for me, because God knew I would fight. God knew I was strong, God knew I would do ALL I can to help others, even before #UCAAN, even in the beginning, in the infusion room, in the hallways of the City of Hope, on the hospital floors, everywhere I went, I tried to bring more to others, more light, because I was not the only one fighting and we all needed it. We all needed that glimmer of Hope, that Strength, that Help, That Support. No matter what Stage we were at. no matter our stories, we were all in essence ONE.

So, as I watch the stories of my friends, family and others online unfold, I find myself emotional.... Someone I know loses a loved one and my heart freaks, Someone is getting married, someone is heart broken due to the death of a pet, someone is loved and in love (which is indeed magical), someone is pregnant, someone got an amazing job, someone just bought their first house, someone lost their job, someone just got diagnosed with cancer and their life is upside down, someone somewhere, feels like I do. I think at some point we all feel this way.

I'm not lost, I'm not thank-less, I'm not depressed (right now), I am however emotional. I am 37 and not married, approaching my 20th HS reunion next year, I sometimes look at my life and wonder if I have accomplished enough for my age and yes It took me a long time to see it but I HAVE.

I struggle with the battles I continue to have (many of which are because of the cancer experience).

Loss of my teeth, which although it's a horrible struggle has allowed to raise awareness about it through #UCAAN and programs we have had.

Getting Healthier, seems to be constant. Changing the way I was eating, it's very different from the way I ate before and during cancer, yet I still struggle with the weight loss (which I have COME a LONG WAY! From 350 at my heaviest on steroids during chemo to 220 now.) Long way! But I have More to go.

Dealing what most people don't know... Steroid induced Type 2 Diabetes, because who wants anyone to know they have that issue. But the entire time I had cancer, my mom told me "no sugar" my doctor told me "Eat what you want, we want you to eat". My blood sugar then (despite my shitty eating habits) was NORMAL. NORMAL ranges, no problems. And now, I eat healthier than I ever have and yep, Steroid induced Type 2 Diabetes, luckily not on insulin, but on plenty of DRUGS, which I HATE and I am working hard to get rid of. But it's a constant struggle. Being given one drug after another, none of which help.... enough.

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But something only a few people know is this.. I try to act as if I don't care, as if it doesn't affect me, but I will tell you a story., not that this one isn't long enough to be considered a novel.... but.....

There was nothing more I wanted than to have children. I wanted to be a teacher. As a child, I wrote and read books to school age kids. I taught a second grader to read when I was in 6th grade. When I was a teen, I always loved my time spent with kids younger than me. I was involved in anything and everything I could do. planning kids events at my apartment complex, Hanging with all the kids in the neighborhood, babysitting and just being as much of a kid as I could. As I grew up, I still enjoyed time with the kids, babysitting, volunteering where I kid. Even as I grew up, Like when I lived in Palmdale, before cancer. I was a "Pirate Art Teacher" and I volunteered my time and supplies to go to a local school in Palmdale (where I knew some teachers) and they would sneak me into school as a guest and we would create awesome backdrop-esc decorations with the students and fill their rooms with fun and color. I loved that stuff.

But it all changed. In 2006, I was diagnosed with Cancer. Everything changed. I was in a drug induced coma because my body couldn't handle the treatment with me being awake. When I woke up to find my "then best friend" in my room, because she often stayed the nights with me, while I slept in that coma (practically every day my mom couldn't). I remember the day, my doctor came in... and Julie asked him... "Rachel really wants kids, can she have them?" It was the answer I never wanted to hear. "No" he said. The chemo has prevented that, she will even go into menopause early. My heart sank.

But I learned to move on front that heart and gut wrenching moment. I was glad to be alive. But I was so devastated. And while people continued to tell me, I could possibly get pregnant or adopt, the more years that passed. I had changed. It was hard to be around kids. I was hard to hear those "little voices". I no longer wanted the same things.

Then there was uncertainty, menopause had struck and doctors were unsure if I could get pregnant. I was told to have a surgery to prevent it just in case, because "the cancer" and the defective chromosome I had could be passed to a child. So I did. I had a surgery to permanently block my Fallopian tubes.When I told my doctor, they said "At least you can reverse that....." The shock on my face and the devastation and realization had hit. The doctors only knew when they had been taught, not what my chances were. I had made an incomplete decision to cancel out any chances. Because I was NOT INFORMED.

After everything I have continued to have issues with my uterus and everything in between. Last year, polyps had filled my uterus and I needed to have surgery again. There was more than that going on and my option was a hysterectomy. So, they removed my Fallopian tubes, my uterus and my cervix. The good thing? No possibility of cervical cancer or uterine cancer. The sad part, no kids. But I knew that I was prepared for that realization. I had been told that for a long time.

So, when I see friends having babies or getting pregnant. I am so happy for them, because they are so lucky to have that chance. But at this point, I don't see that.... well I don't see myself even adopting. Not at this point at least. But it just makes me sad. Because so many people want to have kids, they don't want to adopt and I have been shut down so many times by people not wanting to be with me because of that. and I get it. they're not the right ones for me, but it doesn't hurt any less. It doesn't break my heart any less.. I am so happy that so many are so lucky to be able to get pregnant.

But I've known this for awhile.... I've prepared myself. And I know I'm not the ONLY ONE. But that doesn't make it hurt any less. I love being an auntie Rachel, I like being involved in their lives, but it's just hard to see what I don't have.

I can adopt, one day perhaps, But I know that for now, My life is UCAAN, and the future of this little "baby organization" depends on me. And honestly UCAAN is enough of a child for me. And starting a Social enterprise to help grow UCAAN is another baby. It's a lot. Thankfully I know I CAN, I know I Will and I know it's Possible. Because I Have Beaten the odds more than once.

And perhaps one day I will have a furry child. But UCAAN will always be my baby.

I hope this brings light to your life, understanding more of mine. I hope I have brought strength to you and courage for another day. I've told you Way more than I expected to. But I feel it's important.

Weird things, I don't love screaming kids, honestly I don't know who does. I like enjoying the park, when it's peaceful and not full of crazy.. lol. Kids are cool, but I don't have the same passion I did. I can't write the stories I wrote - loving children's stories, back then. I don't hang out with kids long if I do. Because I am emotional. But Maybe one day I will have more than UCAAN and ShurlyFabulousFoods.....

Life has a way of changing what we plan for ourselves. Backup plans are good, but we rarely know what to prepare for because.... wellll. life is certainly unexpected.

Never thought I'd have cancer, never wanted it, never thought I'd start a Non profit, never thought I'd want to start a food company... never thought I'd be where I am today.. And I am. Sooo WOW! I think that's enough writing for tonight!

UCAAN Change a Life Road Trip - Day #41 - July 26th, 2016

Day #41 – Tuesday July 26^th, 2016 – Leaving SD to head home

As our last day on this wonderful, inspiring journey comes to an end I feel blessed that we were able to impact the lives we did on this trip. Had we not ventured out across the country we wouldn’t have learned about what makes Avera Cancer Center in Idaho Falls, Idaho so amazing and different from other cancer centers, we wouldn’t have met Dr. Scot Ackerman of the Ackerman Cancer Institute in Jacksonville, Florida whose cancer center holds the first and largest proton therapy machine, one that required them to wait on putting the room on the building till the machine was inside. Our adventures meeting some of the youngest researchers at Moffit Cancer center and what they’re finding out in Melanoma and Breast Cancer research. My favorite parts of the trip included meeting patients we had helped through UCAAN, coming face to face to the voices of people who may have been lost without us. 

Meeting new cancer survivors in other states as well who were passionate about what we’ve been doing through UCAAN and what we hope to do in the future, that support means everything to us, it gives us the strength to persevere and move mountains for these amazing warriors of cancer. Meeting new friends in Idaho, South Dakota, Connecticut, Manhattan, Florida, Texas, Colorado & Nevada. Meeting clients we’ve helped in Tennessee, Kentucky, New Jersey & California were amazing experiences. We hope that as you continue to follow you will see what we’ve accomplished on this wonderful trip and will better understand what we hope to do in the future. We hope to raise more funds to help cancer patients NOW, funds for financial needs that are extremely un-funded or barely funded. Financial assistance for things that most people wouldn’t think about like child care, home care and in home nursing care. One of the things I hoped to do on this journey was cook a bunch of healthy meals daily, but I wasn’t able to accomplish this with our long and late arrivals at hotels – in most cases I was exhausted and my priority was getting the daily stories to you. So I hope to do this more often once I get home, so we will have some healthy food recipes out there to help those we work with! 

Thank you again for joining us. 

We hoped to visit 3 fabulous patients today but due to unforeseen circumstances including the horrible fires in Santa Clarita, we won’t be able to. However we will reschedule it for a future date. So, Doryn and I will leave wonderfully gorgeous San Diego to head back home. I can’t believe we’ve been gone for so long. I must admit that it will be wonderful to get back home to sleep in my comfy bed. 

UCAAN Change a Life Road Trip - Day #40 - July 25th, 2016

Day #40 - Monday July 25^{th, 2016  - Another wonderful day in San Diego!}

 

Got up a little later and made a small breakfast for myself. I let Doryn sleep in a bit, while I socialized with the family. I planned on meeting with my friend Doc, a cancer survivor and friend in San Diego to get my oil change done and spend some more time with him. I was excited when Doryn got up shortly after me and wanted to join me. So the two of us headed to Chevy to meet with Doc. When we arrived to drop off my car, which was in need of an oil change bad, Doc walked to my car to help me out. “I paid for your oil change and tire rotation, with my discount.” He said. I was so thankful for his support, such a blessing! I thanked him and gave him a huge hug. 

So from there the three of us hopped in Doc’s car and drove to the Harbor “I know a little coffee and tea shop over by the harbor.” He told us. We arrived to see the beautiful waters, the sail boats and people enjoying the harbor. We walked across the street to the coffee shop and put our orders in. Once again Doc was generous to cover us, which was so nice!! 

The 3 of us talked of many things. How he didn’t like how some organizations had taken advantage of their wealth, which I understood because I had seen it too. We talked about UCAAN and the future, things that I hope to accomplish, many of which were inspired by this trip. We talked about his life dealing with cancer and how easy it was for him and how he had countless family members who all had fought Prostate cancer, some had won and some lost the battle. After about an hour and a half, we headed back to the car and I interviewed Doc by the water before we left for the dealership. I enjoyed the drive back to the dealership as we passed the airport and saw the HUGE FedEx planes that Doc had mentioned earlier. We got to the dealership, where they had rotated my tires, checked my brakes, done an oil change and washed my car – such a beauty!! We hugged and thanked Doc and then we were off once again! We're always on the go throughout this trip... Adventures await us!!

We decided to go shopping for a few things we needed prior to leaving tomorrow including food for lunch, so we could cook once we got back to the house. Once we got back to the house, I made lunch and we watched part of the movie Outbreak, but couldn’t finish it right away, because the kids got home. So Doryn and I finished it in our room – great movie!! Around 7, Doryn and I opted to do some writing outside on the front porch with the sunset ahead of us. As we sat there I thought about the trip and all the milestones we had reached. (Before heading outside I had prepared some Zucchini pizza on slices of the HUGE home grown zucchini I got from my friend Nikki in Utah, they were in the oven while we wrote outside and they were delicious!!)

Doryn and I went inside shortly after going outside because our zucchini pizzas were done. We sat at the table talking to Kelly and the girls (my first cousins- Once removed). Before the girls headed to bed, I gave them some gifts – Kelly included for their hospitality and for the fact that they’re fabulous for hosting us. I gave the girls special necklaces that were also a belt and bracelet, some organic skin cream and natural nail polish. Kelly received a bracelet, clothing pins, lotion and a butterfly scarf, which she mentioned was significant to today since she had seen butterflies earlier in the day. Very Cool!! Before bed the girls enjoyed some of the frozen dessert bites in the freezer that I made. 

Doryn and I said goodnight and headed to our room to relax and write. It wasn’t long before we got sleepy and headed to bed. It was a wonderful day and we were exhausted.  

Tomorrow we head home from this wonderful journey. We are thankful that we were able to share it with all of you! Thank you for following us!