I've Moved My Blog!

Hi everyone! I've moved my blog in order to expand on what I can do with it and also so I can include the upcoming projects I'm working on. Find it at www.fearisa4letterword.org! Thanks for following my adventures and I can't wait to start the next chapter of my life and share it with you all. :)

Saying Yes To The Roller Coaster

Life is a roller coaster. We hear that reference all of the time and I have to agree. I suppose if we choose to never leave the house or engage in activities and invest nothing in relationships with others it becomes more like riding the non-moving horse on the carousel, but generally life will find a way to knock us off of that horse and force us to interact whether we want to or not. I signed up for the roller coaster and as much as I've not enjoyed some of the scary moments or low points, I like the variety and have embraced the idea that the only control I have over the ups and downs is my reaction to them. Every bad patch has lead me to a new and better path that I feel I was supposed to be on. I believe in the saying, "When one door closes, another one opens".

I choose to react to bad/negative things as if I'm supposed to learn a lesson that I can apply to other situations. I try to ask questions and usually the answers help to make me a better person. Why did that happen? Did I do something to bring it about and how can I prevent it from happening again? What helped to make it better and can I apply that to other things I see around me? There are always more things to learn and I find that usually negative situations teach me valuable lessons. It just requires me taking a step backward and trying my best to be objective.

How does cancer fit into this scenario? Well, you won't hear me saying that cancer is a gift. Cancer is a jerk. It did force me off of the track I was on and made me slow down and take a good, hard look around. I find that when I have a lot of time to be alone with my thoughts it can either turn into a spiral down into depression or a time to find inspiration and ideas that will move me further down the path I want to be on. As I get closer to starting my last round of chemo, I'm finding myself focused on what is important to me and I have a number of new projects to work on once I am feeling better. I'm only looking at positives and am taking the first steps towards getting two of those projects off of the ground. I have to believe I'm on the right path because doors have been opening, people have been getting excited to help/participate, and there has been little or no struggle so far. It feels pretty good.

During treatment I've been allowed the opportunity to experience things I never would have otherwise. I have been privileged enough to hear others stories about life, loss, and triumph. The people in my life have shown me great kindness, love, and have helped me in ways I never imagined. There have been encounters with people I've never met that have touched my heart and I've been able to take the time to reflect on all of this and then give back what I can to hopefully help others. It really is about stopping and taking the time to look around and appreciate things we overlook every day. We are conditioned to keep moving and working in order to meet our day to day needs. That is what we have to do to survive and I am no different.

People say life is short, to stop and smell the roses and I can't disagree. Looking at things through a filter of possibly having my lifespan shortened has made me want to laugh, create, and love more. I find myself wanting to listen and act from my heart, from that place where I feel like I'm fulfilling my purpose for being alive. What would the world look like if we were all able to stop and listen to that little voice inside of us? The voice that says "I want to do _____, but have never been able to" or "Doing _____ would really make me happy"? I wish I could give that gift to everyone, the opportunity and means to try new things in order to find personal happiness. I'm barely able to do that for myself right now, but a lot of that has to do with having cancer and also having a pretty simple existence from a financial perspective.

Like I said, enduring chemo has given me a lot of time to think and to listen to my heart and the little voice in there that drives me forward. I'm not quite ready to announce the new project I'll be launching with the help of a few friends. As soon as I am, I will announce it here. I've come to the conclusion that I want to use my experience with cancer to try to make others happy. I feel like it's something I'm ready to do and everything has been falling into place with little effort. One door closed and now another one has opened. I sincerely wish that for all of you, to have that experience, without the serious illness part. I hope you are happy and able to follow your dreams. Even if you aren't right now, never stop dreaming and listening to your heart. For me it has taken trial and error, learning to accept my failures, and many life lessons to get to the point where I am now. I am a work in progress. We all are. I certainly don't know what tomorrow will bring, but I know I will never stop listening and learning and being in awe of what life has to offer.

p.s. - Humor is also a reoccurring theme in my life, in case it wasn't already obvious. Exhibit A - turning hanging out with one of our dogs into this ridiculousness.

Gumdrop and I

A Perfect Day

I know I've been writing about some of the ups and downs I've had lately. This blog entry is a response to that and to the wonderful adventures I had during a trip to the beach yesterday. A couple of weeks ago, when I was bummed about my original drop in white bloods cells, I asked my friend Anna if she wanted to make a day trip to the coast. We made a basic plan and then headed to the Oregon coast with the intention of taking some photos and seeing where the day took us.

We hit the road, windows down and sun shining, talking about many things along the way. It was that ideal day for feeling the wind blowing through your hair, or across my bald head. We first stopped off in Tillamook to enjoy some food and ice cream at the Tillamook Cheese Factory. A large bus full of high school football players pulled up right before us and a mass of young fellas lined up for food. We decided to head back up the road to eat at a little taco stand I had eaten at once before. No waiting and we sat and enjoyed our lunch in peace. We then headed back to the cheese factory for ice cream a couple of photographs together. If you don't document your food consumption, it didn't happen, right?

Anna and I

 It had been decided that we would head to Manzanita, north of Tillamook, for our beach adventure. We hit the road again and enjoyed the winding path of Highway 101 and the minimal traffic we encountered. Once to Manzanita, we parked and got out and headed down to the water. I brought my camera and we had both agreed that we would take photos of each other, topless, facing the water. This has kind of become the signature of many photographs I've been in lately and I thought it would be fun to continue documenting me like that, bald head and tattoos and all.

We made it

Photo by Anna

My feet

Anna

Anna

 There were people on the beach, but not so many that I felt like we were going to cause a scene. Honestly, I'm kind of over thinking like that, now that I have cancer and am learning to not care what others think of me. I took off my bra and shirt and faced the water. Click, click, click and I was done. Anna followed suit. It felt amazing, to be free like that, with the sun shining down and the ocean breeze blowing. It really isn't fair that guys get to experience that whenever and wherever they want to. I recommend trying it, just be aware of your surroundings and crazy people. After we finished and had spent some time with our feet in the chilly water, we decided to lay on the sand in the sun for a bit. I took more photos and tried to absorb how good it felt to be there, in that moment.

There's nothing like the Oregon coast <3

We were here

Fools enjoying the sun

My sandy arm

My sandy tattoo

Anna

Anna

We made our way back to the car and headed north again with the intention of driving through Astoria on our way home to avoid traffic in Portland. While we were chatting and enjoying the ride we saw a vintage black convertible ahead of us that said "back in black" on the back of it. The only thing we could tell about the driver was that he had a bald head and no shirt on. I said something about how I wanted to sit in the passenger seat with my shirt off for a photograph. Wouldn't that be cool? Well, we then ended up following him through traffic, trying to keep an eye on him and where he was heading. He made a right turn and we though we had lost him when we were cut off by another car. The only thing we could see was a Costco and sure enough, he was in line to get gas.

When we were following Jan I took a quick photo

We pulled up and I jumped out and approached him. I told him what I had in mind and he immediately introduced himself as Jan and shook my hand. We were a go! We pulled into the parking lot and when he was finished he drove over and was kind enough to move his surfboard from the passenger side so I could sit next to him. I took off my shirt and Anna took photographs. I wouldn't recommend doing this kind of thing with a stranger, but I immediately knew Jan was not a creeper. I felt completely comfortable and then we were done and ready to hit the road again. Jan gave us his email to send the photos to and as he re-secured his surfboard, he told us he was on his way to go surfing. He hugged me and said, "You now have a friend at the beach". It made our day.

Me, shirt on

Jan and I, shirts off

Just having a friendly conversation

Our last stop was in Astoria for Thai food and coffee and then we made the beautiful drive back home. It was a day for adventure and overcoming fear for both of us. Mission accomplished. Every day I'm challenging myself to think outside of the box. My life in a way has become my art and documenting moments with photographs and this blog are my outlet. As I said yesterday, "You don't know how things will turn out unless you ask." There was a 50/50 chance that Jan would have thought I was crazy, but he didn't. It was an adventure for all three of us and I'm so happy that it went the way it did. Nothing can take that away from me - not cancer, not everyday life and its ups and downs. Once again, I am grateful for life and all of its experiences.

A breathtaking stop before arriving in Astoria

Perfection, sigh

 

White Blood Cells And Life Lessons

Last Friday I had my chemo treatment. I was there for 5 hours and received three weeks of drugs in one shot. As I spoke about previously, I normally have chemo every week, so I was a bit concerned about how I would feel after having three weeks at once and then the white cell booster shot the next day. The answer is that I've done okay, no more nausea than usual, and I now know what they were talking about when they said most people experience bone pain when they have the Neulasta shot.

Receiving the shot was painless. I had the option of my belly or my arm, so I went with my belly because I know it tends to hurt less. I noticed by the next day I was having some bone pain. I mostly feel like I have low back and hip pain, much like I used to when I was pre-menstrual. It's more intense though and is accompanied by sharp/dull pains at random times in my leg bones. I also experienced pressure and some pain in my sternum and was informed that it is an area that produces white blood cells and that it is common to have sternum pain.

It's now 6 days since the shot and I'm doing okay. I still have some of the pains and symptoms, but it's tolerable. I keep telling myself that the pain means it's working, so I'm okay with it. I've had some hot flashes and headaches and it's hard to know which thing to blame that on. It's all lead me to spend most of the week hanging out at home, drinking plenty of water, and taking it easy. I've also spent the week experimenting with the various forms of marijuana, i.e. tincture, hash oil, edibles, in order to find out which ones help with my appetite and nausea. That is a conversation for another day, but it's been good to be home and taking it easy.

While I was in chemo last week an older woman came in and sat down right next to me. Usually if the room isn't full, people tend to sit further away from each other, so this was surprising to me. I was deciding what to watch on Netflix when she struck up a conversation with me. She immediately told me that she believes in God and is a Christian and her faith is helping her through. Next she told me she has stage 4 breast cancer that is all through out her body and that she comes in for maintenance treatment. In other words, she has a terminal diagnosis, but radiation and other things are keeping her cancer from growing. These are the moments when I feel like I've had the wind knocked out of me.

We talked about so many things including art, treatment, our outlook on life, and our prognosis. She told me that her mammograms had been clean and that there was no reason to suspect she had breast cancer. She began having pressure and pains in her sternum and when she spoke to her doctor she was told it was probably arthritis. As time went on and the symptoms didn't lessen, she insisted that something was going on. They performed a pet scan and discovered that she had two tumors growing behind her sternum. By then it had spread to her brain and then continued to spread through out her body.

Stories like this punch me in the face a bit, but then after I take a moment I realize how privileged I am to be there, hearing other people's stories so I can share them. She left for radiation treatment and I immediately put on Bob's Burgers, a show that always makes me giggle. I made it through an episode and then she returned. We continued our conversation and then when she was finished and ready to leave she said, "Take care. You're a beautiful lady". I smiled and said, "You too". And now I've shared some of her story with the world. If I can encourage women to be their own health advocates through things like this, I will feel like I've accomplished something.

We women tend to put others first and put off our own care and well-being. If you feel like you are having symptoms that don't add up, talk to your doctor. If your doctor doesn't listen to you, find one that does.  I chose my doctor because I'd had a lifetime of doctors who were obsessed with my weight. Even my pediatrician put me on a diet. I will not accept care from any doctor who doesn't see me as a person and that is what helped to save my life. Find your voice. Have a friend go with you for encouragement. Just remember that if you don't look out for yourself, who will? Early detection is the key to saving lives. Listen to your body and trust your instincts. I'm not saying show up at the ER every weekend, unless you have to, just take control and speak up for yourself. Let our stories push you to ask questions and insist on answers. xoxo

Disappointment, Setbacks, And A New Plan

Up until now, I have sailed through chemotherapy and remained reasonably healthy. I have given the credit to my regimen of supplements, good nutrition (when I can eat), hash oil, acupuncture, massage, and so on. I really do believe those things have supported my health along the way. Further proof of this is the knowledge that many start to experience complications by cycle 3 and I've made it to cycle 5 before experiencing a drop in white and red blood cells.

Last week when my labs came back I was sent home because my white blood cells were too low. I was given a week off in order to give my bone marrow enough time to generate new cells. I had my transfusion last Friday, which really helped with my red blood cell counts and my blood pressure. Side note - today my blood pressure was up to 116/72 - awesome! When my doctor walked in to the room today I was kind of taken aback when he told me my white blood cells were still just below the acceptable number. I had expected to get back on schedule today and this news really took the wind out of my sails, so to speak.

He told me that the new plan was to give me my 3 week cycle of chemo all at once, instead of spreading it out, and that I was going to have to have the white blood cell booster shot. Let's talk about this shot for a minute. It costs $5000 and jump starts your bone marrow to create more white blood cells. I had decided I wasn't going to have the shot unless absolutely necessary because the major side effect is that it makes your bones ache, like having the flu. It varies from person to person, but it was something I definitely didn't want to experience on top of being sick from the chemo drugs. I've heard it described as horrific, but I am willing to wait and see how my body handles it.

I was sent home again today, so they could order up enough Taxol for me (3 weeks worth). I will be returning tomorrow and will be sitting through approximately 5 hours of chemo in one shot. I will then return on Saturday for the booster shot. I have shed a few tears today because I'm frustrated and disappointed in losing the little bit of control I had over the decision-making process. I'm also sad and concerned about the unknown, now that my schedule has been disrupted and I don't know what all of this will do to my body. I'm hopeful that once we do this I will be able to stay on track for cycle 6 and will finish one week behind schedule, since I had to skip last week.

I want to add that I am aware every day how fortunate I am to have tolerated the drugs the way I have. I know I am close to the finish line and will not take my eyes off of the prize. It feels a bit like I'm being pouty in regard to all of this when I know how bad other people have it. I carry the knowledge with me every day that my aggressive cancer cells would have continued to destroy my body silently and I would have had a terminal diagnosis if not for the common cancer cells screwing up my reproductive system and prompting my doctor to do further testing. I know every day people are losing their battle with many different diseases and they don't get a second chance like I have. I am grateful and if I have to do what I'm told, I will. The side effects are a temporary blip and worth it in the end. Let's do this thing. xoxo

Blood Transfusions Don't Scare Me Anymore

After I had my hysterectomy I lost blood due to "weeping" wounds. This means that the lymph nodes that my doctor biopsied bled until they clotted. I kept having trouble staying awake after the anesthesia wore off and couldn't understand why. Once they explained this to me and told me I needed a couple of pints of blood via a transfusion it made sense. Hours later I awoke and felt much better and was able to function and stay awake.

This week, when I was told my blood cell count was low, I was given the option of a transfusion and I immediately said yes. I had been tired and listless, not wanting to leave my bed much, and I saw a transfusion as a positive step to getting myself back on my feet. I arrived at the center at 8am on Friday with snacks, ready to go. The nurses were wonderful and I was seated facing a wall of windows in a chair similar to the ones in the chemo room at my oncology clinic.

The nurse explained where everything was and that it would take about 4 hours to give me two pints of blood. She gave me Benadryl and Tylenol to help with any reaction I might have (I wasn't worried, since I'd had a transfusion before, but it's a necessary precaution) and then accessed my port. The security checks that nurses do when giving blood is thorough and reassuring. They match numbers and your name and double check everything with two nurses working together to make sure you receive the right bags of blood. Once that was done, I just had to sit and entertain myself while the blood dripped into my body.

This is pretty much what I did to keep myself busy - I took photographs with my cellphone to document my time there. I also plugged in my headphones and watched episodes of The Golden Girls and part of a Robin Williams film that happened to be on one of the television stations. Time flew by and soon I was finished and ready to go home. It's interesting that as time went on they rechecked my vitals and I could see my blood pressure going up from 100/60 to 120/68. The receptionist commented on the color in my cheeks as I said goodbye on the way out too. Hopefully this will help others to not be afraid if they're in need of a transfusion. Yes, things can go wrong, but normally it is a very safe and easy process.

Cautionary paperwork.

My view.

All hooked up and transfusing.

A therapy dog stopped by for a visit.

I appreciate the nurses, who always offer a pillow and blanket.

The Golden Girls!

Such a lovely color.

Checking my blood pressure, again.

Taking my blood into the bathroom with me.

Almost finished.

Afterward, my friend Anni took me out for a crepe and iced coffee. Yay!

I'm Only Human (And So Are You)

Yesterday was the first day when I've shown up for my chemo appointment and have been sent home because my white blood cell counts were too low. This is very common and I've been told that it usually happens around cycle 3. I'm at cycle 5, so I will take that as a good sign that my body is doing better than average. It's disappointing to know that I will now be unable to finish my chemo on September 25th, but you can't force these things.

So, what happens now? My red blood cells were low too, so today I visited the hospital for a blood transfusion (more about that in my next post). I had two when I was in the hospital after my surgery, so it isn't a scary thing for me. I also knew that I felt much better after the last transfusions and I was looking forward to having more energy. I've spent a few days this week napping and not wanting to do much. I blamed it on the hash oil I've been taking daily, but apparently I was just tired and had a low blood cell count.

Let's talk about hash oil for a minute. No, it isn't the same as smoking or eating marijuana. The oil is processed differently and I take a spoonful every night before bedtime. Hash oil has multiple positive properties for me, as a cancer patient. First, it helps me sleep at night. Second, it's rumored to help keep white blood cell counts up. There are other benefits to taking it, but right now, I'm focusing on the first two. I've also heard claims that it cures cancer, but I don't believe that. I believe it is a tool that helps with various issues associated with cancer. I've commented on multiple posts on Facebook that claim that yet another celebrity was cured using hash oil and have said that hash oil (and pot) are great when used in combination with other treatment, but should not be seen as an alternative to traditional medicine. That's my personal opinion, but I have not seen a study that proved that anyone cured cancer via using pot or hash oil.

Now, let's talk for a minute about the various treatments I'm using and why I chose to go through with chemotherapy. I have only had a couple of people try to talk me out of chemo. The mistrust of Western medicine is understandable when it functions as a profit machine and only offers certain treatments or solutions that don't work on every patient. I get that. I also hate having to be firm when talking to someone who thinks I shouldn't have gone through with chemo. Here are the facts - I not only have "regular" cancer, but I am fortunate enough (sarcasm) to have a second type of cancer cells present in my body and they are rare and aggressive. When faced with the knowledge that you have a ticking time bomb growing within your body, what is the right decision to make?

The right decision for me was to listen to my doctor and decide on a game plan that would include traditional treatment from the West while also incorporating alternative and Eastern medicine. Acupuncture, massage, vegetable juicing, supplements, smoothies, hash oil, and chemotherapy - all working together in the hope that we can kill off that which threatens to kill me, while minimizing the affects of chemo on my body. It primarily comes down to a battle against nausea, neuropathy (pain/numbness in the hands and feet), and fatigue, as well as the effects of having a complete hysterectomy (instant menopause symptoms).

I believe the combination of treatments I'm following are working. I've experienced minimal menopause symptoms and have shown no sign of neuropathy. The hash oil is supposed to help keep white blood cell counts up and considering I'm 2 cycles past when the average patient shows low cell counts, I'm ahead of the game. I've not lost weight, even when I have nauseous days. I've thrown up twice. Other than a decline in energy, which is perfectly normal, I'm thrilled with how things are going. I say we each need to be empowered with information and access to a variety of treatments in order to find what works for us.


Okay, back to talking about my current state. I guess, in a way, knowing what's going on with my cell count makes it easier to not feel guilty for staying in bed and resting. I'm the kind of person who likes to feel like I've accomplished at least one thing every day and with the summer days passing by so quickly, I know there will be rain in the near future and the time for working on certain projects will be past me. I try really hard to not beat myself up about it, because I know my health is more important than a to do list right now. That said, it's really difficult to not feel disappointed in myself anyway. I'll get over it and there are far more pressing issues for me to be upset about.

Yesterday I was talking with a friend who is facing losing their health insurance that has been paying for their monthly cancer treatment. He is now facing having to pay the $10,000/month tab on his own, through no fault of his own. Should being unable to continue working at the place providing your health insurance force a person out of life-saving treatment? That is where I have major problems with health care in the US. We want to claim to be number one, yet people fall through the cracks all of the time. How can we throw away people like that? The Affordable Care Act has helped us to take a giant leap forward in caring for those who have been considered expendable, but it does not go far enough. We are all equally deserving of whatever care is available out there.

At the end of the day, I do not understand a system that picks and chooses who is worthy of keeping alive. Why should certain people not matter just because they aren't wealthy?  I have to tell you that if not for the ACA, I would be in big trouble and possibly buried under medical bills right now. People say horrible stuff all of the time about not wanting to "pay for parasites" or something similarly offensive. Why are people in this country okay with picking and choosing who lives or dies? Other advanced countries have universal healthcare and we should too.

I appreciate what President Obama has achieved with the ACA and I know his original plan went much further and was hacked apart by the opposition. It's time for people to take a good hard look in the mirror and realize that they are being selfish when they say they don't want to help others. It's especially hard to see people who are supposed Christians say hateful things about helping everyone equally. We can do better. We need to turn things around for the kids who will inherit the mess that selfish adults have made. Yes, we need money to survive in this society, but at a certain point it becomes obscene and wrong.

I promise to step off of my soap box after I say one more thing. I'm a little bit frustrated that people in my life who love me have to keep using me and my story in order to defend the ACA. Don't get me wrong, I love that I have helped to give people a story about how important affordable heath care is. That said, no one should have to say, "My friend/wife/co-worker would have died without this simple lifesaving service" to try to counter people who rant and rave about not wanting to help others. It's appalling. I think we all need to take a step back and think about what it means to have compassion for others. It's not that hard and giving that little bit of yourself to help others means the world to many. It often means the difference between life or death as well. xoxo