Sunday, November 29, 2015

You'll get a kick out of this

Ok I'm finally getting around to this update I promised. On November 17 I went to Moffitt for blood work, a CT scan and a bone scan. My blood work was excellent. Everything was within normal ranges including my tumor markers. Now tumor markers shouldn't be looked at as an indicator of whether or not you have cancer, but rather how much burden they are putting on your body. So for now I am a much bigger burden on my cancer that it is on me. 

I was told the CT scan looked good. Everything was stable, no new growth. The bone scan was the biggie which indicated that there was a "significant reduction in bone disease". They seemed pretty pumped about that. In fact, they were so excited about that news that they neglected to tell me that the tumor in my breast is half the size it was at my last scan. I read my reports myself or I would not have known. 

So even after being off chemo and without being put on any new cancer drugs, I am still having reduction I my disease. HA cancer, take that. (Strike a ninja pose.) 

So in short, lungs clear, lymph nodes clear, bones getting tremendously better and breast tumor down to about 1 cm from over 6cm. 

I am currently on 3 medications. One for my bones because the chemo can wreak havoc on them and two for hormone suppression because my particular cancer responded to estrogen. These two suck a little bit. The most common side effect is aching joints. I imagine it's very much like arthritis. My joints hurt for no real reason, I get sharp pains if I grab something the wrong way but it feels better the more I move around. 

So watching me get out of bed and come down the stairs in the morning is entertaining. Once I'm up and going I'm fine but once I sit down it doesn't take long to get stiff and ache again. I just do my best to keep busy without overdoing it and try not to sit around without getting up and taking a break from it. 

People keep asking me about my job. Yes I am still teaching...barely. I work less than 10 hours a week and am typically back home by 9AM, which allows me a very flexible schedule for other things. 

I have been doing short term jobs or gigs if you will. Currently I am doing interior design work for a woman who is moving to Cape Coral, repairing a gazebo that has extensive wood rot on the Orange River (tough environment to work in wink wink nod nod). I may be doing an animated video next. 

I also pick up small furniture or other items to repair, refinish or repurpose and have several art projects and jewelry projects going and teach classes about once a month. 

I am really enjoying my life right now. It gives me great flexibility and allows me to do a variety of creative type things which I love. And it keeps me from being bored which happens easily when doing the same old stuff day to day. And so far it is paying the bills. I may not have a lot of extra money right now but I have a lot of extra joy and that's more valuable. 

So if you've got a project that you just haven't gotten around to but would love to get done, call me (picture Leslie Winkle here).

Friday, November 6, 2015

Update

I can't believe how long it's been since I've written an update. I have been off chemo for about 2 months. I am currently only on one shot and a daily pill both for hormone suppression. I have responded so well that the oncologist wanted to hold off on any other meds. They like to try and keep everything they can in their Arsenal for later down the road if and when cancer comes back. I told my oncologist that would not be needing them as I intended on being a miracle. 

No really. That's what I told her. She just laughed and said if anyone will be it'll be you. 

So the first couple weeks my hormones were a little wonky. I was bitchy and then I would cry because I knew I was being an asshole. That has leveled out thankfully. So the only real side effect I'm having now is joint achiness and stiffness. I'm sure it's probably similar to what folks with arthritis feel. The more I move around the better I feel, so I just try to stay active. Even if I'm just watching tv I try to get up ever half hour or so. My feet are the worst. It's quite a sight watching me get out of bed and trying to get downstairs in the morning. Luckily it doesn't take too long to get moving. But it also doesn't take too long to get stiffened back up. It is slowly getting better and acupuncture helps a lot. It goes away after a few months for many people so I've decided to be one of those people. 

My next scans are on the 17th. I can feel the tumor and it seems to have gotten smaller as far as I can tell so I feel it will be good news. But of course it will because I'm a miracle and no tumor is going to take that away from me. 

Friday, July 10, 2015

Tuesday's chemo journey



I began in the usual way of thanking the chemo drug for and accepting it's healing properties while rejecting it's toxic ones. I acknowledged its relationship with the yew tree, a sacred tree associated with regeneration and transformation. I apologized to the spirit of the tree for mans corruption of its medicine, but asked it to hold, protect and renew me. I imagined myself lying under it with its long arms reaching over and around me like a large cocoon. I laid there for a while and then "awoke" in my usual place of beginning a journey. 

I stand in an open field which overlooks a large field of tall purple flowers. To the right is a forest. Walking straight through the field of flowers takes me to a large rock formation which can be climbed or has a cave which takes me down to a beach. Today I walked into the field of flowers past the forest, turned right a direction that has never occurred to me before and began walking. 

It's always amazing walking through this field because you can actually walk through it. In reality you would never be able to simply walk through flowers this thick and tall without great effort. Or my down among them as I often do, but that is what is so wonderful about alternate reality. 

I walked for some time and the landscape began to change. The flowers began to lower and eventually become cloud like at ground level which slowly turned into a rolling mist. The ground became water which was so clear and smooth it was like glass. It was just deep enough for my feet to move through and the softest sand lay below. The sky became crystal clear blue with hints of warm sunlight. The kind of sky you only see in movies and visions. I had a great sense of peace. 

The sand came to an end and dropped off at a clear 90 degree angle below me, where it became open water. There was no pause in my step, I simply walked into it. I began to swim around in the style of the old TV show, the man from Atlantis. Fluid and one with the water. Amazingly my hair was long and flowed behind me as I swam but whenever I came up to breath, it would become short, and then long as soon as I submerged myself again. It felt like power and freedom which for some may feel at odds with one another but really are just two different expressions of the same energy, when in their true form. 

I began swimming with a blue whale. I have dreamt of them most, if not all of my life. Dolphins typically follow, and they did again today. As I swam along the enormous body of the whale, I received a one word message, which my chemo brain will not allow me to remember right this moment. Then he moved effortlessly off into the vastness of the ocean. 

Soon the Dolphins followed and swam all around me. I held their dorsal fin and glided through the water in a way I could never do on my own. Their message was to play and have fun. And to not be afraid of the water. This was both literal and figurative. I am not afraid of water per se, but I get weirded out by our beaches and rivers, etc. knowing they are not clean. 

The thought of being out in the open ocean is very intimidating. I have had dreams about it again for most of my life. I would often be out in a very small boat. In the middle of nowhere. This is where the whale would visit and gently overturn my boat. When I fell in I would become disoriented and panic. Over the years when I would plunge in, I learned to remain calm, let my body totally relax and feel which way it began to move as it floated back to the surface. Then I would know which direction to go. 

I was told not to be afraid. That I have a special relationship with water. It wasn't a call to go off and live by the ocean or become a sailor. It was more subtle and much deeper than that and I both understand it and realize there will be more to discover within it. 

Then a seal came and told me to eat more fish. The smaller the better. And the picture of his fish eating grin is still in my head. I don't really love fish, but I'll try. 

I swam around for some time frolicking with my flowing hair, then went up to my beach. It was sunset and a fire was lit. There was fish ready to be cooked over it. I lay in the last rays of the evening sun, when black panther came. He is often around but not seen, and when seen, he rarely speaks. Today would be different. He came right up and lay down next to me. I petted and loved on him. We rolled around gently wrestling and in my head I kept asking who are you? Who are you? Words would pop into my head but were immediately rejected. Then ancestor? Yes and no. Past life? Not totally in the past. So a part of me that runs through my generations? Then he turned into a woman I have also had dreams of in the past. 

A young African woman who did something that saved her village, but there was always some feeling of negativity around it. It was never a clear dream. More like flashes and feelings. She explained she had gone off alone in the middle of the night. She did not give details as to why but that it was forbidden. While out, she discovered there was harm moving toward her village. Again, no details, but she was able to get back in time to warn her people, who fled and were saved. So I asked which part of me are you? She replied the part that doesn't follow the rules of others. 

She changed back to the black panther and we again played and petted and eventually fell asleep together. Then I was awakened back into the "real" world, laughing out loud from being licked on my head. 

Thursday, July 2, 2015

Unremarkable???

The report from the brain MRI said my brain was unremarkable. THE NERVE!! Okay, okay, that's supposed to be a good thing. So no brain tumors. Yippee!! And the CT scan showed the tumor in the breast has shrunk by almost 1/3. Everything else remains stable. I do not see the oncologist until Tuesday but the reports are available to me online, so I would assume we will continue with the chemo as least for a bit longer. I am relieved that my brain is tumor free. I wasn't very worried, but thoughts did jump in there now and again. My dad had a brain tumor and seeing what that did to him was a little scary. Plus, I just don't need something else on my plate right now. I am blessed that overall I am still feeling really good and have very few effects from the chemo. I am thankful to have the summer off. I had hoped to do a little camping which typically is a time of grounding and reflection, but it is just too hot. The heat does not usually bother me, but with the chemo, I get tired pretty easily and I am more sensitive to the sun, so I will hold off for cooler weather. Soaking up the AC at home while working on some life plans and travels. I am also glad to be back in my own house after house/dog sitting. The dogs were fun, but I was anxious to get back to my own space and my projects. So I should have some new jewelry, among other things, finished by the end of the week. And a friend of a friend wants to record me singing some songs. So lots of fun stuff on the way. Better go have a smoothie so I can keep my energy up. But mostly just because they are yummy! I'll update after seeing the oncologist. And in the mean time try and heal from the hurtful words about my ABSOLUTELY REMARKABLE brain.

Tuesday, May 26, 2015

Tumors are stable


So the scans showed that there was no reduction in any of the rumors but they are all stable which is still a win. I however can feel the tumor in the breast and it feels both smaller and has changed shape. 

Oncologist says if the scans show everything is stable on the next scan, we will look at stopping the chemo and putting me on a maintenance drug. 

As many of you know, we had been wondering if and when I would end up having surgery, but looks like that is out of the picture unless I have a problem with the tumor like is starts causing pain or something. At stage 4 there is no advantage to having it. So me and my tatas will finish out this journey together. 

So here is my own personal guess. I think because of I can actually feel changes in the tumor I may have more shrinkage next scan. And as much as I am ready to stop chemo, I want the tumors to completely go away or at least be as small as possible. So I'm going to be doing whatever I can to make that happen.  

If you had a year to live


Let me say right away, NO this is not some sort of prognosis about my own illness, so breath. I have chemo today and have to take a steroid which has had me up since 2 AM. I was listening to a podcast and without explaining the whole show which would take too long and really isn't relevant, it sparked the question how would you live your life if you only had one year to live. 

Now if you had received a prognosis due to illness you might just give up and give in, or you might run off to find a witch doctor in a foreign jungle in hopes of a cure. But let's take all that out of the equation. You are not sick. You can not be cured. You're not going to have a heart attack or some other preventable malady. One day next spring, you simple will not wake up. It can not be prevented or undone. 

So how would you choose to live your life? Take time to think about it. Sit with it until you connect with it on an honest emotional level. 

I invite you to respond. I will share my response in a couple days and we will see both how differently we may react, as well as what connects us all in this human experience. 

Thursday, May 21, 2015

On the road again...

Time for my next 6 week scan tomorrow. It's a bit of a hassle driving two hours up and two hours back from Tampa for what is literally a 5 minute or less scan, but I don't mind. This is how I get the good news that my cancer is shrinking and eventually......going, going, gone! So time for everybody to muster up all their good energy and help me send cancer on its way. I will head up again on Tuesday to get the results of the scan and my next round of chemo. Thanks for the love and support you have all given me. I will share another update on Tuesday.

Sunday, May 10, 2015

The Fog is Lifting

So typically the weekend after chemo is usually my "down" time. The time when I feel worst. The brain fog and metal mouth settle in and I just feel like vegging in front of the TV or with a good book. It's hard to concentrate for long periods of time on any one thing and I forget words mid-sentence. Everyone experiences this from time to time. So just imagine a very intensified version of this coupled with getting agitated for absolutely no reason and everything tasting like garbage and you might start to wrap your head around chemo a little. The good news is the fog and the metal mouth are starting to lessen already and I was lucky enough to have both a productive and relaxing weekend. After having such an awesome time last weekend with the henna crown party, henna artist Zachari VanDyne, party planner extraordinaire Jenn Blosser and myself met on Friday to explore how we could offer this empowering experience to those dealing with hair loss due to illness in our community. Check out our new Facebook page. https://www.facebook.com/hennaforhope Help us get the word out. Please don't just like us. Share the page. You may not live here locally, but someone you know, or someone your friends know, and so on, just might. Saturday started off with an acupuncture treatment at GoodMedicine. If you haven't been, you should definitely check it out. A great service provided by really great people. The rest of the day me and my couch got real cozy as I watched, mostly with one eye open, some tv and napped. Today I spent time with my blessed church community and then enjoyed lunch with good friends. Now I am off to cook dinner and spend time with my beloved.

Sunday, April 19, 2015

Do you want to feel my boob?

Well that got your attention, didn't it? So let me explain. I was in Starbucks hanging up a poster for my Choosing Life Fund Raiser when a gentleman made a comment that I didn't look sick. I said thank you. He made a joke. "How do I know you didn't just shave your head and are asking for money?" To which I replied, "Do you want to feel the lump in my boob?" He said, "If you hadn't have said lump I might have taken you up on it."

We started to chat a little and he confessed that although he was kind of joking there was some truth to his question.  He said he often felt like he wanted to give, but we unfortunately live in a world where some take advantage of situations and many just outright lie, so he found himself too often being overly skeptical. 

I said, "You know I read a post on Facebook this morning from a prior student which said, From what we get we can make a living, what we give, however, makes a life." He quietly shook his head. 

He started to reach for his wallet but I told him, "No, that's too easy. What I really would like for you to do is go home later and spend some time finding someone or something to donate your money or time to that moves you. Your not wrong in questioning the motivations of people or organizations but don't use it as an excuse to not become engaged with those who do need you. Just start somewhere, because giving is truly infectious. He agreed to so. 

So I would challenge all who read this to reach out and give to someone in some capacity. It doesn't matter who. Or how. Or how much. By touching someone else's life even in the smallest way, you will exponentially expand your own. 

Saturday, April 18, 2015

Hair it comes

After several months of chemo my hair is starting to fill back in and I even needed to shave my legs this morning. And this is exactly how it looked as I did, of course. 
I'm not finished with chemo yet, but most people don't get their hair back until several months after they have finished their treatments. So I am just taking my unusually early sprouts as yet another good sign that cancers ass is officially being kicked. 

Monday, April 13, 2015

Warm feelings

On Friday I had to get my CT scan to check my progress. Now if you've never had a CT scan with Iodine, then you are truly missing out. It goes in through IV so no nasty tasting cocktails. As soon as they inject it, you begin to get the taste of iodine in your mouth and within moments you get a lovely warm feeling all over your body, but that's not even the good part. Several seconds later you are swiftly taken back to your early childhood, when a sensation comes over you....what?....did I just?....no....did I....just....wet....myself?

Hahaha. Okay, they warn you first, but you still wonder for a minute.. Now this is my 5th CT scan and well, I have to be honest, at this point it's kinda fun. I know, I know, but don't judge me.

I will provide a full update about the results, but I have already seen the report from the radiologist. Everything is still shrinking and looking good. So I meet with the Oncologist and we will see what the game plan is from here.

Tuesday, March 3, 2015

Quick update

Just talked to the doctor and she says everything is looking good, "not just good, it's great." 

Bloodwork is excellent. Everything shrinking or stable. She was very happy with the progress of my lungs, and wants me to do exercise that with challenge them. 

So scheduling 3 more rounds of chemo, but will reduce the dosage. 

So good job on all the good thoughts, prayers and positive energy guys. You're healing me right up. See, the power of love can do anything. 


Wednesday, February 25, 2015

Uncovering and discovering

So I had intended to blog much sooner than this, but I am trying to work some things out emotionally and spiritually. I am uncovering and discovering things about myself on a daily basis and I get excited to share, but then it goes to a deeper level the next day, then I'm like I have to write about that but then wham its goes off in a new direction.

I wish we could record our thoughts although the reality of that is also terrifying. When I have these revelations I want to write everything down, but I also realize that if I am busy writing then I am, not truly present in the actual experience. So I will just have to write when I am moved to and try to recapture the spirit of the journey and you my beloved readers will have to understand that it is just that, a journey, and what I think and feel today, may or may not be what I think and feel tomorrow. But, of course, this is true of us all if we are growing as human beings.

So, I keep saying that this disease is a blessing. Let me clarify that I am not saying cancer itself is a blessing. It sucks. And it sucks a lot worse for many people out there that are truly suffering with it. However, I personally feel that we manifest the dis-ease that we experience in our lives. No one sits around thinking, I want to have cancer. But most of the people I know would readily agree that when we are negative, worrisome, push down our emotions, etc. it makes us sick. We know this to be true. Stress sends many to the hospital. But when we begin suffering from our ailments, we start looking at what is wrong with our diets or life styles, and do not turn inward and ask what am I feeling or not feeling that has manifested itself into this suffering in order to get my attention?

So this is were I am at. I have always been a very healthy person. When I have had any serious problems that required the attention of a doctor, it was due to injury, not illness. So what have I been ignoring for so long that it had to manifest itself in this way to get my attention and what the hell am I going to do about it? This is not something that can be resolved in one blog post, so I invite you to explore with me. I welcome your comments and your insight even if I may not always agree with you, understanding that those I react most negatively against probably hold some truth. The key to being courageous is being vulnerable.

It has been said that disease and ailment is the result of emotional wounds, and cancer is the result of long term resentment. You can even go so far as to associate specific types of ailments are areas of the body that are suffering to specific types of emotional suffering. This is backed up by years of ancient spiritual practices. Acupuncture pinpoints (pun intended) specific energy blockages and treats them by their associated areas of the body. The chakras are all associated with particular body parts and systems.

So let's start with some previous physical problems I have had.

Knee problems - I actually had a tumorous growth and plaque buildup in my left knee and still have some very minor issues with the right. I haven't actually found out what the emotional association for this is yet, so if anyone has any insight please feel free to share.

Gluten intolerance - the intestines are governed by the sacral chakra which govern sexuality, sense of abundance, well-being, pleasure, and the ability to feel creative. Its color is orange, a color I have been very drawn to over the last several years along with green.

Stomach - hiatal hernia and gerd - solar plexus chakra - self worth, self confidence, self esteem, ability to be  confident and in control of our lives. Its color is yellow which I avoid, especially in clothing saying I look terrible in it.

Breast cancer - heart chakra - love, joy, inner peace, ability to love, quality of love. Color green.

Throat, I've had issues since my neck surgery with hoarseness, but have also had an ongoing problem with always feeling like I need to clear my throat - throat chakra - self expression, truth, holding secrets, ability to communicate and express oneself. Color is blue which I have found myself very drawn to over the last several months.

So I will leave this for the moment so I can go home and eat, but will be back to get into more detail about each of these.


 

Tuesday, February 10, 2015

Bzzzzzz

So I just got back home from my fourth round of chemo, which flew by because I ended up getting texts from two very special friends which kept me occupied and entertained. On the ride home I felt very relaxed but not sleepy. Now that I am home I feel jacked up like I had too much coffee but without the shakes. So far anyway. We will see if I can focus this energy on something productive. Will I end up crashing or not being able to sleep tonight? Heehee. So much to look forward too.

Wednesday, February 4, 2015

Health update

This is way overdue but it is all good news. A couple weeks back I got the results of my scans and bloodwork. The tumor and lesions are all shrinking and my bloodwork is looking really good. 

I am having very little side effects from the chemo. I actually feel really good. There are some minor issues such as having a metallic taste in my mouth after the chemo, which is probably the worst thing because food taste weird and water taste really bad. It does not stop me from eating and drinking however. In fact, I have gained about 10 pounds, which is most of the weight I lost at the beginning of all this. 

I also have a bit of chemo brain. I tend to forget little things. I forget who I had conversations with sometimes after talking to several people in a row even though I remember the conversation. At least for the most part. I go to the store and forget what I needed. Mostly, I go blank for a word or name when I am talking. So pretty much the same thing everybody does on occasion, just more often. 

My energy level is good and I am back to pretty much living life as normal. I do make myself rest as I understand that just because I feel well I am still fighting off this disease. 

I have been doing a lot of spiritual work which I will write about in my next post. 

I have done 3 rounds of chemo and the doctor has scheduled me for 3 more since I am responding so well. My next treatment is next Tuesday and hopefully I will continue having positive results. All of your good thoughts and energy must be working so keep up the good work.